tag:blogger.com,1999:blog-41981819213541173722024-03-12T17:10:02.546-07:00autism warsUnknownnoreply@blogger.comBlogger119125tag:blogger.com,1999:blog-4198181921354117372.post-31670939910153281622023-02-02T19:54:00.015-08:002023-02-03T14:13:13.569-08:00Drapetomania, Legalizing Harm, And Pushing Segregated Autism<p><br /></p><blockquote style="border: none; margin: 0px 0px 0px 40px; padding: 0px; text-align: left;"><p></p><div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMdWpAJuZKcy2-0NEG8WJcZwJpdAudqZFmykMADQxdxx3emyDeqsFpVlZHQm9veT6cGc5AKt-qLrPa5DyNhvyFO2-lGdO0jgGfpgNGCGAkBY4g-wJgeb0kU8-KQb3TU2yBJCmHrTjU2AVUQ9HsHZU64u6O2FGUD2622N_5uEVcV_T9nPZL2dvRrPTkSw/s2345/Screenshot_20221028-190124_Twitter~2.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2345" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMdWpAJuZKcy2-0NEG8WJcZwJpdAudqZFmykMADQxdxx3emyDeqsFpVlZHQm9veT6cGc5AKt-qLrPa5DyNhvyFO2-lGdO0jgGfpgNGCGAkBY4g-wJgeb0kU8-KQb3TU2yBJCmHrTjU2AVUQ9HsHZU64u6O2FGUD2622N_5uEVcV_T9nPZL2dvRrPTkSw/w246-h400/Screenshot_20221028-190124_Twitter~2.jpg" width="246" /></a></div><p></p></blockquote><p></p><div class="read-aloud" style="text-align: left;">The image on the left captures a Tweet promoting an opinion piece by Alison Singer. It reads:</div><div class="read-aloud" style="text-align: left;"> "Spectrum (Autism Research News) @Spectrum "Pretending people with profound autism don't exist by eliminating language to describe their symptoms is itself ableist," writes @alisonsinger in this Viewpoint. @AutismScienceFd</div><div class="read-aloud">spectrumnews.org Opinion: It's time to embrace 'profound autism' | Spectrum | Autism Research News</div> <div class="read-aloud">Ms. Singer's OpEd brought to mind the published opinions of <a href="http://pennandslaveryproject.org/exhibits/show/medschool/southerndoctors/benjaminrush" target="_blank">Dr. Benjamin Rush</a>, who believed that Black skin was the result of a mild form of Hansen's disease, and his pupil, Samuel Cartwright, who imposed the terms <a href="https://en.wikipedia.org/wiki/Drapetomania">Drapetomania</a> and <a href="https://en.wikipedia.org/wiki/Dysaesthesia_aethiopica">Dysaesthesia aethiopica</a> for the singular purpose of manipulating public policy in the slaveholding South. </div><div class="read-aloud"> <a href="https://www.phillytrib.com/commentary/drapetomania-compliant-blacks-sane-resisting-blacks-insane/article_0087a2d0-1acb-5364-870c-1205212e0a13.html">Cartwright's abuse of science to preserve the inhumane enslavement of those who share my race (because he deemed it convenient to the comfort of himself and his southern white peers</a>) is called scientific racism. So is what Singer and her small but influential group of frustrated autism parents and guardians doing by promoting this label as a means to a segregated end, <a href="https://www.ohchr.org/en/calls-for-input/report-impact-ableism-medical-and-scientific-practice" target="_blank">scientific ableism</a>? </div><div class="read-aloud"><br /></div><div class="read-aloud">During this moment, when <a href="https://www.nytimes.com/2021/04/30/health/psychiatry-racism-black-americans.html" target="_blank">the American Psychiatric Association is just beginning to confront and acknowledge the harm done by its racist past,</a> witnessing these disingenuous attempts to bombard opinion pieces to force an unneeded label that centers the worst moments of high-support-needs autistics is extremely disturbing. This driving of the parent-created 'profound autism' label is too akin to that ghastly habit of legalizing harm through pathologizing difference. In other words, it seems like the ableist equivalent of scientific racism.</div><div class="read-aloud"><br /></div><div class="read-aloud">The long and intentional effort to diminish my nonspeaking autistic son's civil rights and personhood by the constant piling on of dehumanizing labels in the name of justifying their desired shift towards mandated increases in institutionalized methods of care and research that are to this day harming those meant to be helped should not be happening in this millennium. The ongoing horrors in <a href="https://revealnews.org/podcast/trapped-abuse-and-neglect-in-private-care/" target="_blank">institutional care settings </a>should concern us more than adding a label to wrest control of where and how autism public policy and funds are distributed and managed. The autism conversation has wrongly followed the path of enforcing behavioral compliance. It is too much like the enforced compliance codified into laws and imposed upon my enslaved ancestors. It must find a new, humane direction.</div><div class="read-aloud"><br /></div><div class="read-aloud">The history of harm visited on my ancestors informs my worry. I am disturbed by individuals like Ms. Singer using crushing power to try and dictate public policy decisions based on their own intolerance for nonspeaking high support needs adults. BIPOC parents and our nonspeaking autistic offspring are powerless witnesses in a world where parents and guardians with financial power and racial privilege are the primary voices heard in public policy spaces. The money, networks of power, and platforms given to these adults cannot be matched by voices like ours.</div><div class="read-aloud"><br /></div><div class="read-aloud">How can my son and I fight for his right to exist as an autistic nonspeaking adult free from the conscription to the faux 'profound autism' label? The current definition of Autism Spectrum Disorder in the DSM V is all-inclusive and enough. And yet, a concerted effort to drive the term 'profound autism' into existence to segregate my son from his peers who use verbal speech is popping up in OpEds anywhere these influential parents' networks reach. </div><div class="read-aloud"><br /></div><div class="read-aloud">My distress won't ever be heard in white-dominant media spaces. But I keep coming back to Samuel Cartwright and how his invention of the term Drapetomania codified the pretext for slave catchers to use mental health as an excuse to harm ancestors who wished to be free and live in the same society as any other person. Scientific racism in research, medicine, and psychiatry has done irreparable harm to BIPOC Americans for years. There has not been a complete reckoning of the damage done to disabled Americans for decades, either. To see this continuing war for control of public policy through the creation of labels meant to push for reductions in community-based, humane treatments of nonspeaking autistics is heartbreaking.<p>Each time one of these OpEds appears, remember the scientific racism of Benjamin Rush and his student Samuel Cartwright. Labels matter; the wrong label, used as leverage to strip nonspeaking autistics of autonomy and humane approaches to living, only drags autism public policy back into the abusive world of institutionalization, seclusion, and harm. Don't just look at the attempts to increasingly impose the term profound autism. Ask yourselves why these attempts are happening. Save your offspring and mine. And help all their communication to be accessible, autonomous, and heard.</p></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-16127552268489932542023-01-13T00:59:00.000-08:002023-01-13T00:59:08.653-08:00The Acceptance Letter<p> </p><h2 style="background-color: white; color: #ec6e20; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 23.296px; font-style: italic; line-height: 1em; margin: 0px 3px 6px 0px; padding: 0px; text-rendering: optimizelegibility;">The Acceptance Letter</h2><p class="introP" style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;"><em style="font-weight: inherit; text-rendering: optimizelegibility;">By Kerima Cevik</em><br /><em style="font-weight: inherit; text-rendering: optimizelegibility;">Autistic Self Advocacy Network</em></p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">Dear Mumu,</p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">One day, in case you ever feel like knowing more about how you light up our world, I am building a digital hope chest of words for you to read or hear. People say it doesn’t matter what I write. You won’t understand. Ever. But I believe in my heart that you will when it is time to read or hear this.</p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">I know you are always here. I once watched a Youtube video named “Autism Took Mikey.” I never understood that</p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2aKI1y1O2tlWPePB-GYqqF4NaWGBn9N07JCbTgP2P_G9u4lPwJjWVKXLgDQd8PmfXnm2MhP8hJtijRARtmou6SR14OskDYHBfggJ6ZyPO8kp2ErzYU2eK0s8dTjDyb2tsyc-3Ba4fdG5B-01GE4yjBYmK7l9FFCAG1YvP86HW8T4tpef8y-Nhtf0S2w/s482/MuBlue.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="412" data-original-width="482" height="274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2aKI1y1O2tlWPePB-GYqqF4NaWGBn9N07JCbTgP2P_G9u4lPwJjWVKXLgDQd8PmfXnm2MhP8hJtijRARtmou6SR14OskDYHBfggJ6ZyPO8kp2ErzYU2eK0s8dTjDyb2tsyc-3Ba4fdG5B-01GE4yjBYmK7l9FFCAG1YvP86HW8T4tpef8y-Nhtf0S2w/s320/MuBlue.jpg" width="320" /></a></div><br /> video. Autism didn’t take you any more than my dark skin made me something awful. It makes me different. Autism makes you different. Not less than anyone. Not more. Just different. I knew you were still with me. You just weren’t being acknowledged anymore. If you flapped your arms, it bothered people. When I said, “My toddler is autistic,” and people responded as if I just said that autism was a car that ran you over, I wanted to slap them. They may think what they like. I see you. You are perfect to us. As you grow and your differences become more apparent, so does the fact that you are still the same exuberant, adventurous and happy person you were before the name autism came into our lives.<p></p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">I never wanted to cure you. I understood you were different. I feel this difference that makes you unique will somehow also make you successful. The things you did that others found strange or quirky didn’t bother me. They endeared you to us. What drove us to seek answers was you couldn’t speak anymore. And you had no idea when you were in danger. That terrified me. I wanted to know what was causing you to not to speak. And why you stopped understanding when we called your name.</p><blockquote class="pull alignleft" style="background-color: white; color: #444444; float: left; font-family: Georgia, "Bitstream Charter", serif; font-size: 1.3em; font-style: italic; font-weight: bold; line-height: 1.5em; margin: 0px 12px 0px 0px; padding: 0px; text-align: right; text-rendering: optimizelegibility; width: 250.797px;"><p style="margin: 0px; padding: 0px 0px 15px;">“I see you. You are perfect to us. As you grow and your differences become more apparent, so does the fact that you are still the same exuberant, adventurous and happy person you were before the name autism came into our lives.”</p></blockquote><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">I was relieved when I learned you were autistic. We needed to understand what was going on. And the relief of hanging a label on all these challenges was great. I was still terrified that you wanted to walk toward moving buses. That you stopped answering to your name and your jaw didn’t seem strong enough for you to drink from a straw. But what mattered was that you were still here with us.You can overcome any challenge. You already have. <strong style="font-style: inherit;">I’m right here in your corner, son. Always</strong>. We will fight for what you need to live a full life; as full a life as you can. And autism will not be an excuse. It will be a part of your identity.</p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">I am proud of you. You are one of the bravest people I know. You will continue working tirelessly on any skill you want to master until you prevail. You are extremely patient with those who care for you. When you get frustrated, it is because you’ve tried all avenues to communicate and are not getting through to us. I understand you enough to know I have a good son. A loving son. No mother could ask for more. Thank you for choosing me to help you overcome these challenges. It’s been an incredible adventure so far.</p><p style="background-color: white; color: #444444; font-family: "Trebuchet MS", arial, clean, sans-serif; font-size: 12.8px; margin: 0px; padding: 0px 0px 15px;">All my love,<br />Mom</p><div><br /></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-46039013759600083772022-09-24T16:43:00.001-07:002022-10-04T11:24:43.818-07:00#AutisticWhileBlack: The Case of Aisha X<p>
</p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNVZV9zqmcTILMAqO0dsssSFLgj1HyHJtarsVGVljy-gkkofafl7m-yCgpgarYbvKvYeHsNjzTs-Q-tiZO86wzjz5e-oE5KpVylo0IPlrhAU47IWdBzcfSI0NtwvzaKl7EHCmcK2a_5ClbrNdAfVmPbvJhrQ6pvsszP2Xn0byxviyAHNFvKCo5ORdH0Q/s1732/IMG_20220924_153214294_Gothic.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><span style="font-size: x-small;"><img border="0" data-original-height="1732" data-original-width="1154" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNVZV9zqmcTILMAqO0dsssSFLgj1HyHJtarsVGVljy-gkkofafl7m-yCgpgarYbvKvYeHsNjzTs-Q-tiZO86wzjz5e-oE5KpVylo0IPlrhAU47IWdBzcfSI0NtwvzaKl7EHCmcK2a_5ClbrNdAfVmPbvJhrQ6pvsszP2Xn0byxviyAHNFvKCo5ORdH0Q/w214-h320/IMG_20220924_153214294_Gothic.jpg" width="214" /></span></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">Stock image of a mother and<br />Infant son.</span></td></tr></tbody></table><span style="font-size: large;">W</span>hat does an African American Muslim woman do when several years into a legal battle against an abusive ex with documented deep seeded rage issues for custody of her firstborn son, she learns her younger son is autistic, she is autistic, and she lives in a county where the Family Courts have a researched and documented bias against women in family court cases?<p></p>
<p>The relief of finally understanding who
she is is crushed with fear of yet another layer of retaliation from both the devout Christian family of her ex, who never approved of her and a court that now has ableism to add to their bias against her.</p>
<p>This is Aisha X's dilemma.</p>
<div>
Aisha X, given an alias here to protect her from further retaliation, is alone at the intersection of public policy, racialized ableism, structural misogyny, and Islamophobia.
</div>
<p>
Aisha is one of the many Maryland women who have lived the reality of a system in which family court has favored her son's abusive father over her, as DCist/WAMU reported in research here: <a href="https://wamu.org/story/19/08/19/fathers-are-favored-in-child-custody-battles-even-when-abuse-is-alleged/">https://wamu.org/story/19/08/19/fathers-are-favored-in-child-custody-battles-even-when-abuse-is-alleged/</a> and NPR reported here:<a href="https://www.npr.org/local/305/2020/07/29/896692057/lawmakers-and-experts-recommend-changes-to-maryland-s-child-custody-court">https://www.npr.org/local/305/2020/07/29/896692057/lawmakers-and-experts-recommend-changes-to-maryland-s-child-custody-court</a>. All of which led Maryland State Senator Susan Lee to draft Senate Bill 594 in 2020 <a href="https://mgaleg.maryland.gov/2020RS/bills/sb/sb0594f.pdf" target="_blank">here</a>.</p>
<p>
In July of 2020, NPR published a DCist/WAMU report of research that showed Aisha X's case of a judge favoring her son's abusive father over her in her custody battle was not unusual. The study found that judges favored fathers over mothers in custody battles over children in Maryland–even when fathers were accused of or found guilty of abuse. Quoting NPR:
</p>
<blockquote>
Professor <a href="https://xyonline.net/sites/xyonline.net/files/2020-05/Meier%2C%20U.S%20child%20custody%20outcomes%20in%20cases%20involving%20parental%20alienation%20and%20abuse%20allegations%202020.pdf">Joan Meier at George Washington University Law School, and other researchers</a>, provided data supporting the group's recommendations. Meier's research shows that when a mother is accused of alienation, she is twice as likely to lose custody compared to when she is not. But in cases where a father claimed a mother was pitting a child against him to disparage his character, Meier found a judge ruled that the mother's claims of child abuse were unsubstantiated. The study looked at more than 2,000 custody cases involving child abuse, domestic violence, and alienation nationwide.
</blockquote>
<p>In Aisha X's case, her diagnosis and faith differences were weaponized to push things in her abusive ex's favor. Her fight for custody of her son is an uphill battle that continues as I write this.
</p>
<p>
Ironically, in 2016 <b>Maryland Bill SB 765, CINA,</b><b> Guardianship, Adoption, Custody, and Visitation - Disability of Parent, Guardian, Custodian, or Party,</b> was signed into law.
</p>
<p>
On paper, the law is supposed to protect disabled parents from discrimination in child custody disputes. <a href="https://disabilityrightsmd.org/sb-765-signed-into-law-protects-against-child-custody-discrimi nation/">Disability Rights Maryland</a> praised the bill's passage as follows:
</p>
<blockquote>
SB 765 will protect people with disabilities and their families from discrimination in private custody, visitation, adoption and guardianship proceedings by requiring any findings that a person’s disability affects the best interest of a child to be recorded in writing; allowing the party with a disability to show that supportive parenting services would prevent such finding; placing the burden of proof on the party alleging that the disability affects the child’s best interest; and conforming the Family Code definition of “disability” to federal law. DRM was pleased to work with National Federation of the Blind, People on the Go, The Arc Maryland, Maryland Association of Centers for Independent Living, other members of the Maryland Disability Rights Coalition, the National Council on Disability, and bill sponsors Senator Jamie Raskin & Delegate Sandy Rosenberg on this groundbreaking legislation.
</blockquote>
<p>
This bill was created and initially championed by the physical disability community. Despite being meant to protect all disabled parents and preserve their families, its promise in practice does not seem to be helping those with invisible or intellectual disabilities like Aisha X. Her decade long fight was further complicated by her late autism diagnosis. No organization in the autism or disability justice community has stepped up to help her fight for her right to be the custodial parent of her firstborn son. </p>
<p>
One of the unspoken realities in the autism conversation is that many parents of autistic children are diagnosed late. Especially BIPOC women, who are too frequently overlooked or misdiagnosed, can live for years not understanding their disability is ASD. Some African American parents <span style="font-size: 14.6667px; white-space: pre-wrap;">go undiagnosed until one of their kids is diagnosed or they recognize certain traits in themselves that leads them to an eventual diagnosis. Yet neither disability justice groups nor any stakeholder in the autism conversation has expanded their circles of support to include adults like Aisha X and their families. Like many autism-related service systems, legal services are early intervention and childhood centric. Proper legal representation from a team that understands autistic adults can mean the difference between losing one's custodial rights and keeping them. </span>A judge not having any clue about what autism is and how it impacts a plaintiff can see direct responses as brusque or rude. This escalates bias against autistic parents in court.</p>
<p>
But here's the critical point of Aisha X's late diagnosis. A competent parent doesn't suddenly become incompetent when they are told they have always been autistic. Systemic ableism drives systemic presumptions of incompetence, and that injustice can lead to courts missing the obvious red flags of abusive nondisabled spouses/ex-partners wanting sole custody of children and ruling against disabled parents.
</p>
<p>
<a href="https://www.washingtontimes.com/news/2003/mar/18/20030318-090057-4236r/">Ernestine Bunn Dyson</a>, <a href="https://www.washingtonpost.com/archive/local/2004/12/04/boyfriend-arrested-in-greenbelt-killing/f7684af5-e461-470e-8f20-2a56fa483469/">Doreen M. McClendon</a>, <a href="https://www.wusa9.com/article/news/local/maryland/maryland-woman-set-on-fire-yvette-cade-17-years-later/65-11f1a8b9-7371-4cb9-9b08-32437a1ba9f4">Yvette Cade</a>, <a href="https://www.nbcwashington.com/news/local/maryland-woman-hopes-her-survival-story-inspires-others-to-escape-domestic-violence/2049623/">Freda Edwards</a>, and <a href="https://www.washingtonpost.com/archive/opinions/2006/10/08/not-the-judges-fault-span-classbankheadbut-the-system-didnt-work-for-jackie-lewisspan/c812eb89-25a8-41c9-b94a-1a372f8b84eb/">Jackie M. Lewis</a> were victims of domestic violence who were failed by Prince George's (PG) County's court system despite laws supposedly put in place to protect them and their children. Yvette and Freda were burned alive by their abusers but survived. Ernestine, Doreen, and Jackie were murdered. All reported physical and emotional abuse to <a href="https://www.washingtonpost.com/archive/local/2005/10/27/pr-georges-judge-taken-off-bench/85693f7b-9b9b-4c58-9733-ddf1d8458e98/">authorities</a>, some of whom either dismissed the signs of abuse or claimed they didn't have sufficient cause to justify restraining orders.</p><h3><span style="font-size: small;">Possible Faith-Based Causes of PG County's High Domestic Violence Rates</span></h3>
<p><msreadoutspan class="msreadout-line-highlight msreadout-inactive-highlight">Aisha X's case was initially being tried in PG County. One cause of this ongoing issue of high rates of domestic violence <msreadoutspan class="msreadout-word-highlight">put</msreadoutspan> forward by Christian community </msreadoutspan>activists in PG County was that biblical scriptures were weaponized to justify the demand that women must be submissive to men. <a href="https://www.washingtonpost.com/archive/local/2006/10/09/activists-take-to-prince-georges-pulpits-to-break-a-pattern-of-domestic-violence/44f3d706-4b02-4b6b-aa4c-851da4817633/">This<msreadoutspan class="msreadout-line-highlight msreadout-inactive-highlight"> concern led to local <msreadoutspan class="msreadout-word-highlight">clergy</msreadoutspan> deciding to work within church congregations to clarify the scripture to </msreadoutspan>reduce the amount of faith-based domestic violence in the County</a>. But this approach to the County's systemic domestic violence issue is exclusionary and limits the scope of outreach to one faith-based congregation. I am saddened that these activists didn't reach out to all other faith communities and humanist organizations, meet with domestic violence victims and make transformative change an inclusive, county-wide process. Notably absent in these efforts was any mention of disabled women like Aisha X, <a href="https://ncadv.org/blog/posts/domestic-violence-and-people-with-disabilities">who experience domestic violence by an intimate partner</a> at higher rates than their nondisabled peers.</p><p>Activists, by definition, should be at the vanguard of informing and training members of the Family Court system about the high rate of domestic abuse of disabled women. But if faith-based bias is already in the decision-making process of a judicial system, what hope do Aisha X and others have of being believed, much less arguing their cases?</p><p> A recent judgment by <a href="https://www.npr.org/2022/09/08/1121690478/a-texas-judge-rules-coverage-of-anti-hiv-medicine-violates-religious-freedom#:~:text=Transcript-,The%20judge%20in%20Texas%20ruled%20that%20a%20requirement%20for%20businesses,medication%20that%20prevents%20HIV%20infection.">A Texas judge who ruled coverage of anti-HIV medicine violates religious freedom</a> is a grim reminder that far-right groups have negatively influenced our justice system. This shift in the bias towards cases arguing for religious freedom superseding the human rights to healthcare and a safe family environment for women and children defy secularism as the law of the land. These increasingly extreme and unpopular court decisions debunk the myth that family preservation is an excuse to deny women in PG County restraining orders and the right to be custodial parents of their children. </p><p>In cases like Aisha X's, where two parents fighting for custody don't share the same faith, but an abusive parent and their family may share the same faith as people who play critical roles in the Family Court system, bias can destroy the case before any judicial decision. Little things, like deliberately sending a court summons to the Muslim parent's old address, can cause that parent to look as if they are irresponsible. Religious freedom, one of our Constitution's founding principles, was meant to allow all religions or nonbelief to exist without the persecution religious groups fled from in the first place. If those who drafted the Constitution wanted to declare the United States of America a Christian nation, they would have stated that in the document. </p><p>The right to practice one's religion or no religion isn't meant to be used as a misogynistic cudgel. And yet Aisha X's situation is another example that the weaponizing of any belief towards a bias against marginalized people is a violation of the human rights that were supposed to make the American experiment singular in its humane approach to its citizens. </p><p>Aisha X and many others are caught at the intersections of public policy, religious misogyny, the hierarchy of disability bias in public policy practice, and systemic ableism. Aisha X's case is so shocking that I am considering supporting a mutual aid drive to raise funds for her continued fight to gain her custodial rights. </p><p>Update:</p><p>Here is the link : </p><p><a href="https://www.gofundme.com/f/9q3wq-please-help-me-reunite-with-my-child?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1">https://www.gofundme.com/f/9q3wq-please-help-me-reunite-with-my-child?utm_source=customer&utm_medium=copy_link&utm_campaign=p_cf+share-flow-1</a></p>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-69138370239050371342022-06-02T07:56:00.005-07:002022-06-02T08:00:41.456-07:00Curiosity <p> </p><p>Written on this day in 2017:</p><p></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqQjJdlZQ9LLyYG2HPnZg0kFSbvwp4cDMJYcAQ9qqO6dwGQI4vo5qlJO-wKzKZlqdoU2A88jDLf92FViqdnodnMaGp3-DYRUG4FKXWcK_PXD8XXMdDPra2TYfL8aFrf30xw0JbpkgtevHQMtCYqOfyOLomiSNZQG9GXcxAms-eMFTzeLPclq8NaKjIbg/s1750/IMG_20220602_104230250.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1142" data-original-width="1750" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqQjJdlZQ9LLyYG2HPnZg0kFSbvwp4cDMJYcAQ9qqO6dwGQI4vo5qlJO-wKzKZlqdoU2A88jDLf92FViqdnodnMaGp3-DYRUG4FKXWcK_PXD8XXMdDPra2TYfL8aFrf30xw0JbpkgtevHQMtCYqOfyOLomiSNZQG9GXcxAms-eMFTzeLPclq8NaKjIbg/s320/IMG_20220602_104230250.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Image of my son's thumb on his AAC device and my right hand holding sunglasses while my left seems to be reaching from our deck and petting a Goose in the yard. </span></td></tr></tbody></table><p></p><p><br /></p><p>You know why I get into so much trouble in life? Curiosity. </p><p><b>Example 1</b>. Despite having a wicked sore throat, I am curious about similarities between nonspeaking autistic vocalizations and throat singing. So I am seriously avoiding work by making weird sounds with Mu to see if we can approximate throat singing.</p><p> <b>Example 2</b>. I am also curious about whether Mu would be willing to listen to someone giving him directions on how to avoid driving into our backyard pond if I sat him on a riding lawn mower and taught him how to use it to mow the lawn. </p><p>Seriously ignorant, ablest people look at him and tell me to grieve. I look at him and say, "I'm curious, son. How do you feel about putting on noise canceling headphones and trying out driving a riding lawn mower?" </p><p>Me increasingly curious about whether I should rent or buy a riding lawn mower and put it in the hands of my willful teenage nonspeaking autistic son? Beautiful day outside. Fat loud geese flapping everywhere. Do you all see where this is going? </p><p>The reason I believe in Divine intervention is that Mu and I have his dad, my husband Nuri, and as a result, Mu and I aren't sitting in the middle of that pond on a riding lawnmower covered in goose down.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-49531825249677376742022-04-04T11:29:00.010-07:002022-05-23T16:39:02.398-07:00#SurvivingPolicing: People of the State of California v. Isaias Cervantes, Case No. BA499677<p><span style="font-family: trebuchet;"></span></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVJrWaMFIYqkCTNYYthfbDEwJDYvXWSezDaAdTsoNzV_A02VxtCOl4NCnrwNXFIKm6jwRubUKouHs-SWzNTkRh14H0DFFiDuUI5b048Vv2YgpBSMrW76H8xPAmyxolp7OeXna_AifZHFDZDLy_Kv9AlfDcS3116mSfUUZC9kfWeep2UwmkPSiP61Saxw/s700/Isasias.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="681" data-original-width="700" height="311" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVJrWaMFIYqkCTNYYthfbDEwJDYvXWSezDaAdTsoNzV_A02VxtCOl4NCnrwNXFIKm6jwRubUKouHs-SWzNTkRh14H0DFFiDuUI5b048Vv2YgpBSMrW76H8xPAmyxolp7OeXna_AifZHFDZDLy_Kv9AlfDcS3116mSfUUZC9kfWeep2UwmkPSiP61Saxw/s320/Isasias.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Image of Disability Voices United Poster Calling<br />For a Justice for Isaias Cervantes protest on January<br />12th.</td></tr></tbody></table><span style="font-family: trebuchet;">During #AutismAcceptanceMonth, I want to highlight what happens during and after autistic children, teens, and adults experience catastrophic encounters with law enforcement. I'm hoping that spotlighting what goes wrong will guide all of us to work for better public policies that save autistic lives and end these encounters altogether.</span><p></p><p><span style="font-family: times;">Let's start by discussing <i><b>The People of the State of California v. Isaias Cervantes, Case No. BA499677.</b></i></span></p><p><span style="font-family: times;">On March 31, 2021, Isaias, autistic and Deaf, was in a state of meltdown at his home when his <a href="https://www.latimes.com/california/story/2021-04-07/l-a-sheriff-deputy-shooting-mental-disability" target="_blank">sister called 911</a> for mental health support. Mr. Cervantes' <a href="https://www.latimes.com/opinion/story/2022-01-09/sheriff-shooting-isaias-cervantes" target="_blank">therapist and the family</a> were present at these events, waited outside, and explained to the responding police officers that he was calm, nonviolent, and simply needed to be taken to the hospital. The rest of the story, per LAist is as follows:</span></p><p><span style="font-family: times;"></span></p><blockquote><p><span style="background-color: white;"><span style="font-family: times;"></span></span></p><blockquote><p><span style="background-color: white;"><span style="font-family: times;"></span></span></p><blockquote><p><span style="background-color: white; font-family: times;">In March of 2021, Cervantes was <a href="https://laist.com/news/criminal-justice/la-sheriff-releases-isaias-cervantes-shooting-video-but-questions-remain" target="_blank">shot and paralyzed</a> by an L.A. County Sheriff’s deputy who was responding to an emergency call from the family.</span></p><p><span style="background-color: white; font-family: times;">Deputies say Cervantes reached for one of their guns, but <a href="https://laist.com/news/criminal-justice/la-sheriff-releases-isaias-cervantes-shooting-video-but-questions-remain" target="_blank">body-cam video</a> released by the department doesn’t clearly show that.</span></p><p><span style="background-color: white; font-family: times;">More than six months later, <a href="https://laist.com/news/criminal-justice/cudahy-man-with-autism-who-was-shot-by-sheriffs-deputy-now-faces-criminal-charges" target="_blank">the district attorney’s office charged Cervantes with assault </a>with a deadly weapon on a peace officer.</span></p><p><span style="background-color: white; font-family: times;">More than a dozen advocacy groups — including the Autism Society of L.A. — were shocked by the move and <a href="https://www.disabilityrightsca.org/latest-news/disability-rights-groups-submit-letter-to-la-county-district-attorney-urging-dismissal" target="_blank">sent a letter</a> to DA George Gascón’s office.</span></p></blockquote></blockquote></blockquote><p> Isaias is paralyzed <a href="https://www.latimes.com/opinion/story/2022-01-09/sheriff-shooting-isaias-cervantes" target="_blank">from the bullet</a> that damaged his spine and one of his lungs. The unusual thing about Isaias' encounter is that he survived it. So many others (<a href="https://homicide.latimes.com/post/steven-washington/" target="_blank">Steven Eugene Washington</a>, <a href="https://news.usc.edu/63983/setting-a-civil-rights-precedent/" target="_blank">Mohammad Usman Chaudhry</a>, <a href="https://www.chicagotribune.com/news/ct-xpm-2012-02-02-ct-met-calumet-city-shooting-20120202-story.html" target="_blank">Stephon Watts</a>, <a href="https://www.nbcnews.com/news/us-news/new-orleans-apologizes-settles-police-shooting-suits-13-3m-n698016" target="_blank">Ronald Madison</a>) do not. </p><p>I have often stated that police are not mental health professionals and that mental health crises should not be part of law enforcement activities. </p><p>Despite the Los Angeles Sheriff’s Department having <a href="https://lasd.org/transparency/met/">Mental Evaluation Teams</a> (MET) meant to have health clinicians ride along with sheriff’s deputies since 1993, no MET responded to the Cervantes call.</p><p>I believe there are safer ways to handle mental health emergencies, guide individuals and families to humane resources and thereby reduce these catastrophic encounters with police. One of those ways begins with who we call to respond to mental health crises.</p><p>Beginning this July, a nationwide mental health crisis number — 988 — is supposed to provide an alternative to 911 and provide more appropriate responses. This is an imperfect start, but it is a start.</p><p>In Maryland, no funding has been provided to support the well-resourced systems needed to transition away from the present crisis. If state 988 services go live without funding to manage the spike in crisis call volume, wait times will overwhelm the national suicide hotline meant to take the overflow of calls. </p><p>The risk of being killed by law is <a href="https://www.treatmentadvocacycenter.org/overlooked-in-the-undercounted" target="_blank">16 times higher</a> for neurodivergent individuals with untreated high support need mental health concerns. So reducing calls to 911 and giving immediate support to those calling 988 is potentially a matter of life and death.</p><p>I'm not certain why, if the federal government has seen fit to create the 988 health crisis number, they are not providing state and local governments with funding to bolster resource centers across the nation. Could states begin transferring some funding formerly allotted to law enforcement for mental health crisis response into the resources and services that will be shouldering the responsibility for supporting mental health crisis needs going forward?</p><p>Maryland lawmakers are proposing a trust to fund our call centers, and California has a bill working its way through its legislature.</p><div>This is California's bill: <a href="https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220AB988" style="color: #1155cc;">https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220AB988</a></div><div>This is Maryland's effort: <a href="https://www.fundmd988.org/about-md-988" style="color: #1155cc;">https://www.fundmd988.org/about-md-988</a></div><div>and Maryland's bill: <a href="https://mgaleg.maryland.gov/2022RS/bills/hb/hb0293T.pdf" style="color: #1155cc;">https://mgaleg.maryland.gov/2022RS/bills/hb/hb0293T.pdf</a></div><div><br /></div><div>This is a life and death question for marginalized autistic and other neurodivergent folx. Like <span style="font-family: times;">Isaias Cervantes, one phone call can be the difference between receiving help in a crisis, getting permanently injured, unjustly entering the criminal justice system, or dying. </span></div><div><span style="font-family: times;"><br /></span></div><div><span style="font-family: times;">Help make a difference. Check with your state and ask questions about what non-police resources will be available for your loved ones should they call 988 when it goes live in July. Your actions could help save so many lives.</span></div><div><span style="font-family: times;"><br /></span></div><div><span style="font-family: times;"> </span></div><div><span style="font-family: times;"><br /></span></div><div><span style="font-family: times;">In memory of Ryan LeRoux</span></div><div><span style="font-family: times;"><br /></span></div><div>------------</div><div><span style="font-family: inherit;"> <span class="css-901oao css-16my406 r-poiln3 r-bcqeeo r-qvutc0" style="background-color: white; border: 0px solid black; box-sizing: border-box; color: #0f1419; display: inline; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; white-space: pre-wrap;">This </span><span class="r-18u37iz" style="-webkit-box-direction: normal; -webkit-box-orient: horizontal; background-color: white; color: #0f1419; flex-direction: row; white-space: pre-wrap;"><a class="css-4rbku5 css-18t94o4 css-901oao css-16my406 r-1cvl2hr r-1loqt21 r-poiln3 r-bcqeeo r-3s2u2q r-qvutc0" dir="ltr" href="https://twitter.com/hashtag/AutismAcceptanceMonth?src=hashtag_click" role="link" style="background-color: rgba(0, 0, 0, 0); border: 0px solid black; box-sizing: border-box; color: #1d9bf0; cursor: pointer; display: inline; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; list-style: none; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; text-align: inherit; text-decoration-line: none; white-space: nowrap;">#AutismAcceptanceMonth<img alt="" class="r-4qtqp9 r-dflpy8 r-9cviqr r-zw8f10 r-10akycc r-h9hxbl" draggable="false" src="https://abs.twimg.com/hashflags/Autism_Acceptance_Month_2022/Autism_Acceptance_Month_2022.png" style="display: inline-block; height: 1.2em; margin-left: 2px; margin-right: 0.075em; vertical-align: -20%; width: 1.2em;" /></a></span><span class="css-901oao css-16my406 r-poiln3 r-bcqeeo r-qvutc0" style="background-color: white; border: 0px solid black; box-sizing: border-box; color: #0f1419; display: inline; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; white-space: pre-wrap;"> and </span><span class="r-18u37iz" style="-webkit-box-direction: normal; -webkit-box-orient: horizontal; background-color: white; color: #0f1419; flex-direction: row; white-space: pre-wrap;"><a class="css-4rbku5 css-18t94o4 css-901oao css-16my406 r-1cvl2hr r-1loqt21 r-poiln3 r-bcqeeo r-qvutc0" dir="ltr" href="https://twitter.com/hashtag/SAAM2022?src=hashtag_click" role="link" style="background-color: rgba(0, 0, 0, 0); border: 0px solid black; box-sizing: border-box; color: #1d9bf0; cursor: pointer; display: inline; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; list-style: none; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; text-align: inherit; text-decoration-line: none; white-space: inherit;">#SAAM2022</a>,</span><span class="css-901oao css-16my406 r-poiln3 r-bcqeeo r-qvutc0" style="background-color: white; border: 0px solid black; box-sizing: border-box; color: #0f1419; display: inline; font-stretch: inherit; font-variant-east-asian: inherit; font-variant-numeric: inherit; line-height: inherit; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; white-space: pre-wrap;"> all my essays are being written to encourage your support for </span><a class="css-4rbku5 css-18t94o4 css-901oao css-16my406 r-1cvl2hr r-1loqt21 r-poiln3 r-bcqeeo r-qvutc0" dir="ltr" href="https://twitter.com/behearddc" role="link" style="border: 0px solid black; box-sizing: border-box; color: #1d9bf0; cursor: pointer; display: inline; font-stretch: inherit; font-style: inherit; font-variant: inherit; font-weight: inherit; line-height: inherit; list-style: none; margin: 0px; min-width: 0px; overflow-wrap: break-word; padding: 0px; text-align: inherit; text-decoration-line: none; white-space: inherit;">@behearddc</a><span style="background-color: white; color: #0f1419; white-space: pre-wrap;">, a cross-disability abolitionist organization supporting and advocating for Deaf, autistic, and other disabled people in prison or who returned home from prison. </span></span></div><div><span style="font-family: times;">Please share and consider donating by clicking the link below:</span></div><div><span style="font-family: times;"><a href="https://behearddc.org/donate/">https://behearddc.org/donate/</a></span></div><p><br /></p><p><span style="font-family: times;"></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-36577219309098892062021-12-10T08:15:00.015-08:002021-12-13T06:49:35.971-08:00#AutisticWhileBlack: At The Intersection of Deaf Culture and Nonspeaking Autism<p> </p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwTcSd0SbDoActNvvXgq2IWB-0CyGKZv9OJV7bGjONehWnf0T047fEmrLHNfFyDrXbx2XkT09sTQKTkWlevwCMBOxgiwKhjtLDu-72U8LnMfUqOeelK_OPqEvPer8Pnp0_SBlFVkDQjpvJ/s640/mucevikasl.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwTcSd0SbDoActNvvXgq2IWB-0CyGKZv9OJV7bGjONehWnf0T047fEmrLHNfFyDrXbx2XkT09sTQKTkWlevwCMBOxgiwKhjtLDu-72U8LnMfUqOeelK_OPqEvPer8Pnp0_SBlFVkDQjpvJ/w400-h300/mucevikasl.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Image of Mustafa, age five, signing to his sister in a gray <br />long-sleeved shirt and black slacks. He is a brown Latine <br />presenting boy with short black curly hair. Image credit<br />Kerima Cevik</td></tr></tbody></table><span style="font-size: x-large;">W</span>hen Mustafa was three years old, he began to miss speech milestones. At first, when I spoke to him in English, he responded in English. When one of us spoke to him in Turkish, he responded in Turkish. When a kid at the playground, or I, spoke to him in Spanish, he responded. But one day, when he was spoken to, he ceased responding verbally.<p></p><p>After we got his diagnosis, his sister began teaching him baby sign language. Simple things, to help him communicate his needs. About the time we were struggling to learn these signs with him, both his father and I were working and Musti's sister was going to college. So baby signs began to lag.</p><p>One Friday night, we were all exhausted and decided to order a pizza. When the pizza arrived Mustafa rushed to the door and peeked up at the pretty delivery person, a young woman who was working her way through college. Without speaking she looked at him and began signing at him. Mustafa signed and jumped excitedly in response. It took us a moment to realize our delivery person was deaf. She was reading our son's baby signs and body language and totally understood him.</p><p>She understood him completely. It was a monumental event for us.</p><p>This kind of interaction happened whenever we met deaf people until he entered Kindergarten. Whenever we were in a public space, deaf people simply presumed he was deaf and would immediately sign back, so joyfully and rapidly that it took us moments of standing before them confused before they realized that we didn't know enough sign language to communicate at that pace, and neither did Mustafa. </p><p>They didn't just presume he signed. Those who responded so quickly were mostly African American deaf community members. They observed his body language as well as his attempts to sign. We, verbal speech-centric folks, have somehow forgotten how critical gestural language is to communication. But deaf community members have not.</p><p>What does a family do when the school system refuses to implement communication as an IEP priority, teachers and staff who sign refuse to respond to their son's efforts to sign his needs, and that family encounters lateral ableism that bars them and their nonspeaking son from learning sign language? Here's one example of what happened to us. His first thanksgiving event at his school resulted in a series of holiday photos posted to the school's webpage which inadvertently showed our son trying to sign to his teacher. The parent who took the photos, upon realizing that they showed our son signing to the teacher and the teacher who was trained in sign language deliberately turning her back on him, warned the school, who took down the photos before I could capture them and bring them as proof to the upcoming IEP meeting that our son was capable of learning sign language. That parent's reward was the school providing her child with a much wished-for item on the child's IEP. Because somehow it was her belief that stepping on my son's right to communicate was necessary to help her child.</p><p>His teacher insisted that our son did not have the fine motor skills to learn sign language.</p><p>I tried using programs and online resources. It is difficult going and I find that nuance is lost, meaning one might believe they are signing one thing when they are actually signing something else entirely. Then there is the cultural specificity of Black sign language. For our son, the sign language he learns needs to make him a part of his community. Like African American Vernacular English(AAVE), Black sign language should include him. But those who might teach him are not put in a position to be paid for their labor. In our former school district, where the non-speaking student body is disproportionately Black and Brown, no African American sign language teachers were employed. Why does this disparity exist?</p><p>In 2014, I watched a documentary of a class in rural Uganda being taught sign language. The ages of the students ranged from 9 to 80. They were taught by a teacher who was given intense sign language training in order to return him to rural areas and teach people of all ages born deaf or deaf as a result of illness how to communicate through sign language. <br /></p><p>We are the supposedly developed nation, yet we do not do as much for our own nonspeaking adults and children. Despite the challenges of the Ugandan program and the ableism displayed in the documentary, deaf rights activists are fighting to give their community the gift of communication. It is that important. </p><p>Meanwhile, Mu, my husband, and I are back to the task of trying to find a way we can all learn to sign properly in order to help our son communicate beyond baby-sign. There is a universal sign language. Perhaps we will try that. But the reality of our sign language story is that sign language learning should be free and open to everyone who is nonspeaking, in the same way, it is being offered to the deaf rural citizens of Uganda. The basic sign language lessons featured in the documentary above were life-changing for the people who walked miles to get them. The lessons lasted three months. In three months, these people went from isolation to community. The idea that people with ID/DD are not worthy or able to learn sign language is a crock. Lateral ableism as a barrier to access to anything that might help another disabled human is intolerable. Sign language is affordable, can be learned at any age, and can be life-changing. </p><p>So why is something so affordable, basic, and scalable not part of language support for our nonspeaking loved ones and their families? We are such a technology-centric society that we tend to forget that sign language is a communication method that can be gained by all nonspeaking autistics who don't have OT challenges regardless of class and income level. When we say communication first, that needs to mean that all available methods of communication should be considered for AAC.</p><p><br /></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-43772182217374604802021-12-02T01:03:00.002-08:002021-12-03T12:17:15.974-08:00#AutisticWhileBlack #SaveDarius II The MTA, In Black And White<p> </p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaES5yfvHpADLxg9rutyiKVSYn6U9lO1EHyHsJpNKyiw7KOEzWca_WP1WEcHhmWHzBHwijibjJTl16cSx55O60f1hsRquDAGMeoKFnHuf0XfFY9pKu7EjyhaO39qIKUTtZo72YAOLqMiE/s1600/Darius_McCollum_3Off_The_Rails.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="667" data-original-width="1000" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaES5yfvHpADLxg9rutyiKVSYn6U9lO1EHyHsJpNKyiw7KOEzWca_WP1WEcHhmWHzBHwijibjJTl16cSx55O60f1hsRquDAGMeoKFnHuf0XfFY9pKu7EjyhaO39qIKUTtZo72YAOLqMiE/s320/Darius_McCollum_3Off_The_Rails.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Darius McCollum image of an older African American Male<br />with a short full beard. A blurred rail car behind him.<br />He is wearing a black ski cap, black coat with a dark blue<br />zipped up inner-lining. Image credit Adam Irving</td></tr></tbody></table><br /><b>“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”</b><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;">― </span><span class="authorOrTitle" face=""lato" , "helvetica neue" , "helvetica" , sans-serif" style="background-color: white; color: #333333; font-size: 14px; font-weight: bold;">Ta-Nehisi Coates, </span><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;"></span><span id="quote_book_link_25360188" style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;"><a class="authorOrTitle" href="https://www.goodreads.com/work/quotes/44848425" style="color: #333333; font-family: Lato, "Helvetica Neue", Helvetica, sans-serif; font-weight: bold; text-decoration-line: none;">Between the World and Me</a></span><br /><br />Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.<br /><br />I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.<br /><br />Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.<br /><br />But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut-punched in the truth that <b>everything</b> lands with great violence upon the black body.<br /><br />Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human-interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every <a href="http://intersecteddisability.blogspot.com/2014/11/making-neli-latson-matter-invisible.html">Neili</a>, <a href="https://www.wnycstudios.org/shows/aftereffect">Arnaldo</a>, and Darius' path?<br /><br />At age 53, the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.<br /><br />I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.<br /><br />What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?<br /><br />Sometimes it is easier to see the reality of this when black lives are compared with white ones..<div><br /></div><div>So let's look at someone else from New York, with the same love of the New York transit system, and how his life turned out. Jonathan Mahler's The New York Times Magazine essay, <a href="https://www.nytimes.com/2018/01/03/magazine/subway-new-york-city-public-transportation-wealth-inequality.html" target="_blank">The Case for the Subway</a>, includes a brief history of a man named Max Diamond. He lived in Park Slope, not Jamaica, Queens. Max displayed the same hyper interest in trains and the subway system. Like Darius, Max had a prodigious knowledge of detailed information related to trains, subways, track layouts, signals, and switches. While Darius was trained by employees to such a degree that he could cover their shifts, Max had the resources to start his own YouTube channel under the handle Dj Hammers at age 14. </div><div><br /></div><div>Max became a celebrity and gathered a following of fellow subway lovers. Per Jonathan Mahler: "In 2016, Diamond was hired by the M.T.A. as a paid intern, and at 21, he now crunches numbers in its performance-analysis unit while he works toward an economics degree at the City College of New York. " Darius McCollum repeatedly applied for employment with the M.T.A. but was repeatedly rejected. The M.T.A. staff who trained him and were complicit in his impersonating staff by teaching him to do their jobs and cover their shifts have not been held accountable for leading him into his present predicament. Darius' family had set up a job for him driving a bus route in the Carolinas, but because Darius had a parole hearing in NYC, he fell back into seeking out his 'friends' in the M.T.A. and back to the pattern of indulging in his singular focus, the city's transit system. </div><div><br /></div><div>Max Diamond filming and sharing details about the NY transit system was never considered a security risk. Darius McCollum, trained by M.T.A. employees and knowledgeable enough to correct issues when they occurred in the same transit system was considered dangerous. Max Diamond is now a conductor for the New York City Transit system. Darius McCollum has been rewarded for the same interest and hyperfocus on the same transit system by a lifetime in prison. </div><div><br /></div><div>Within the autism conversation, the violence visited upon the Black autistic body is never felt as we who are African American, feel it. Yet we have been denied the platforms and resources needed to counter the harm done to our people. The number of late-diagnosed Black autistics in the carceral system is a statement of the difference between being disabled and Black, or white. The question is, is our community going to act to solve the inherent injustice of structural ableist racism and how it impacts autistics like Darius? </div><div><br /></div><div>This is the second time I've asked that our community act to build a bridge to a better life for Darius and others who should never have been behind bars in the first place. </div><div><br /></div><div>Either our entire community acts to aide Darius or accepts their complicity in the harm done to him.</div><div><br /></div><div>Want to help?</div><div>Start here: https://www.change.org/p/new-york-state-attorney-general-darius-mccollum-is-not-dangerously-mentally-ill</div><div><br /></div><span id="docs-internal-guid-668e199b-7fff-7a60-05cc-9d79085abb07"><div><span style="background-color: white; color: #333333; font-family: Georgia; font-size: 12pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></div></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-31288558807736943662021-07-27T11:39:00.001-07:002021-07-27T11:50:52.498-07:00#ADA 2016 While Black Revisited: In Memory of Elsie Lacks<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3tXxBS-PYeKqi3KtI66_S95moL_efEmAxK2_KB50tpHAZjD7UiLVh63f1LDBy_4fHL6Y2dhBaNTsb-OMX7uk8ZxKub1G0oXOLfy9lKsUWqDHH-LIIFVJ5x9_IfMgQf97IlwwiAlqj8f9O/s1000/Elsie_Lacks2.jpeg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1000" data-original-width="812" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3tXxBS-PYeKqi3KtI66_S95moL_efEmAxK2_KB50tpHAZjD7UiLVh63f1LDBy_4fHL6Y2dhBaNTsb-OMX7uk8ZxKub1G0oXOLfy9lKsUWqDHH-LIIFVJ5x9_IfMgQf97IlwwiAlqj8f9O/s320/Elsie_Lacks2.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Image of Elsie Lacks, a small Black girl in a <br />plaid dress, white shirt. socks, and shoes. <br />Her hair is straightened. <br />Credit: Lacks Family</td></tr></tbody></table><span style="font-size: large;">I</span> read the story of Henrietta Lacks that made Rebecca Skloot famous. The family descriptions of Elise Lacks, Henrietta’s immaculately cared for, nonspeaking daughter (in the header photograph) who had epilepsy and cerebral palsy, show what Skloot and the Lacks family didn’t know but anyone familiar with autism would have guessed. There was a possibility that Elsie Lacks may have also been autistic. <br /><br /> Her sister Debbie did not know where Henrietta placed Elsie when Henrietta’s cancer became too advanced to care for her, and she spent years trying to find out what happened to Elsie, hoping she was still alive and Debbie could bring her home and care for her as her mother had. The horror of discovering what Hopkins medical researchers had done to Elsie and all those Black men, women, and children diagnosed with epilepsy at the Crownsville State Hospital, the only mental institution in Maryland for Black patients, traumatized Debbie. She never fully recovered from the shock of what she learned that day. <br /><br />A final, heartbreaking photograph of a much older Elsie taken after she was experimented on and mistreated is so distressing that I can’t post it here. Debbie Lacks later died of a heart attack. Before her fatal heart attack, Debbie Lacks made certain that a grave was made and a funeral held for her beloved sister Elsie. Her body, like many of the black bodies of those who suffered and died at Crownsville, was most likely given over to University of Maryland medical school. Even in death, the black body was not allowed to rest in peace. <br /><br />So now I am going to say the unpopular thing, the incorrect thing. For the memory of Elsie and all those Black people with psychiatric disabilities who suffered and died in places like Crownsville before and since. <br /><br /><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_1NhmaPkfaf3U3Ki_nj1OZ2DnnfCKjN41NwpNL4-lUh3ya80zNoJR1f5dXDGsnL8fGCVIFDQFvwJ2ysnTidqfemOnZwYYOtq5G0MaE3C8pvOBYx57-gzmgXgM81vVhw8djX4c_gDu409t/s250/Elsie_Lacks3.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="183" data-original-width="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_1NhmaPkfaf3U3Ki_nj1OZ2DnnfCKjN41NwpNL4-lUh3ya80zNoJR1f5dXDGsnL8fGCVIFDQFvwJ2ysnTidqfemOnZwYYOtq5G0MaE3C8pvOBYx57-gzmgXgM81vVhw8djX4c_gDu409t/s16000/Elsie_Lacks3.jpeg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The grave Debbie Lacks had made <br />in Memory of Elsie Lacks </td></tr></tbody></table>The biggest myth in the conversation about mental health and African Americans is that we are ignorant of psychiatric disability, that we believe our myths, and that families don’t speak of mental health or reach out when we need it. My stepfather’s family was open and upfront about the larger family’s mental health challenges, traumas, and worked together to keep members with psychiatric disabilities active parts of the family and protected them from police, self-harm, and harm from others. When it became clear that some family members needed professional help, the family sought help. <br /><br />Generalizing all African American family mental health experiences across socioeconomic and cultural subgroup constellations is wrong and sends the wrong message to us at a time when we have had enough of being gaslit into accepting outside views of what our people and our culture of mental health is by a government that allows systemic racism to continue without accountability and harm to rain down on our people while we watch. Following this lack of action with demands to our people that they seek mental health support is horror story irony. <br /><br />Having a national conversation about African American psychiatric disability, in this moment of extreme racism, while blithely brushing aside the fact that our government is not protecting those who are poor and Black from systemic racism is beyond inappropriate. <br /><br />Believe me, we are all aware of psychiatric disability. This is not the time to deconstruct the resilience of our people to serve any purpose, regardless of the good intentions behind such efforts. The underlying message being sent to those who are poor and Black is that they are being told to out themselves as also having a psychiatric disability, without having established any protection for said individuals to retain their parental custody rights, protection from involuntary incarceration in psych holds, and mental institutions, or protection from further redlining based upon the additional label of psychiatric disability. <br /><br />We live in the age of policing for profit, blatant racism, blatant ableism, a resurgence of legalized euthanasia calls for increasing institutions with researchers lobbying for the right to experiment on institutionalized people without their consent and loss of civil rights. African Americans in poverty are already in precarious positions. This approach to psychiatric disability is the wrong one at the wrong time, particularly since the federal government has been unable to demonstrate any ability to protect African Americans who have died from racist attacks or excessive use of force. <br /><br />The DOJ has failed to try a single case in which unarmed black people have died, both during police engagement and when walking down the street since Trayvon Martin’s murder. Now I'm supposed to believe that our people, particularly our young men living in poverty, should declare they have psychiatric disabilities and the historic horrors and abuses that occurred in places like Crownsville State Hospital, for which to this day, neither the state of Maryland nor Johns Hopkins School of Medicine have apologized, will not be repeated? <br /><br />There can be no going forward without establishing enforceable protections for all people with psychiatric disabilities. There can be no going forward without apologizing and taking responsibility for the past. <br /><br />There has been no justice for our people. But they are now being asked to risk themselves further and trust those who oppressed them in the past again with no apologies and no guarantees of justice if such abuses recur? <br /><br />Trust them? <br /><br />Really? <br /><div class="buofh1pr j83agx80 cbu4d94t gs1a9yip k4urcfbm qv66sw1b" style="align-items: stretch; display: flex; flex-direction: column; flex-grow: 1; width: 700px; word-break: break-word;"><div><span class="d2edcug0 hpfvmrgz qv66sw1b c1et5uql lr9zc1uh a8c37x1j keod5gw0 nxhoafnm aigsh9s9 d3f4x2em fe6kdd0r mau55g9w c8b282yb mdeji52x a5q79mjw g1cxx5fr knj5qynh oo9gr5id" dir="auto" style="display: block; line-height: 1.1765; max-width: 100%; min-width: 0px; overflow-wrap: break-word; word-break: break-word;"><div class="_8emu"><p dir="auto" style="color: var(--primary-text); font-family: inherit; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px;"><span style="font-family: inherit;">----------------------------- </span></p><p style="background-color: white; color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"> <span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"> </span><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; font-weight: 600; letter-spacing: -0.41px;"><span style="font-family: inherit;">References:</span></span><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"> </span></p><p style="background-color: white; color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"> <span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;">Rebecca Skloot’s ticket to fame: The suffering, death, and </span><i style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"><span style="font-family: inherit;">Immortal Life of Henrietta Lacks</span></i><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;">: </span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8" href="https://l.facebook.com/l.php?u=http%3A%2F%2Frebeccaskloot.com%2Fthe-immortal-life%2F%3Ffbclid%3DIwAR0rUDuHnKUXO80v966yGEVYOOziQl1-qjIOacHePzGZqlA-NPrrlsDrQxk&h=AT3_18VmK8TTLnNVyg24dbciS9-1HoHeeSdTqj4jqxOzAaO3hB7RRtOdyRJ2AE_dlpn4nOxxcKqgpUtE1yGI6ylcvwGZGN-LplBHRJO5iEucqhJ9ZpXsEtATIfsJnVJRgMs1cA" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank"><span style="font-family: inherit;">http://rebeccaskloot.com/the-immortal-life/</span></a><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"> </span></p><p style="background-color: white; color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"> <span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;">The institutionalization, suffering, and death of Elsie Lacks as part of the history of Crownsville State Hospital: </span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.capitalgazette.com%2Fcg-tragic-chapter-of-crownsville-state-hospitals-legacy-20140730-story.html%3Ffbclid%3DIwAR1OIGbjMxNogrkbX6rNPh-www88-16wqwvHJr6sZcexZFi2ELYaFMXTHeo&h=AT3_18VmK8TTLnNVyg24dbciS9-1HoHeeSdTqj4jqxOzAaO3hB7RRtOdyRJ2AE_dlpn4nOxxcKqgpUtE1yGI6ylcvwGZGN-LplBHRJO5iEucqhJ9ZpXsEtATIfsJnVJRgMs1cA" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank"><span style="font-family: inherit;">http://www.capitalgazette.com/cg-tragic-chapter-of-crownsville-state-hospitals-legacy-20140730-story.html</span></a><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"> </span></p><p style="background-color: white; color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"> <span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;">The formal request led by the ACLU from multiple organizations to then Maryland Governor Martin O'Malley "</span><i style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;"><span style="font-family: inherit;">to investigate and publicly acknowledge the historical mistreatment of African-Americans in the state’s mental health system, particularly at Crownsville State Hospital, which, for half a century, was the only state hospital to admit significant numbers of African-Americans</span></i><span style="color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px;">." </span><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8" href="http://www.aclu-md.org/uploaded_files/0000/0453/crownsville_8_2_13_finalwsigs.pdf?fbclid=IwAR204nWpPPNH-bUOuSryZgPsgviGK5mimrRFxgzXX66AIkFk4OwqjeKvlTM" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank"><span style="font-family: inherit;">http://www.aclu-md.org/uploaded_files/0000/0453/crownsville_8_2_13_finalwsigs.pdf</span></a></p><p style="background-color: white; color: var(--primary-text); font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; line-height: 24px; margin: 16px 0px 0px; padding: 0px; white-space: pre-wrap;"> <a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl q66pz984 gpro0wi8" href="http://www.baltimoresun.com/news/maryland/anne-arundel/annapolis/bs-md-ar-crownsville-black-caucus-20130918-story.html?fbclid=IwAR22MEWhUx_hcRb0wMIEKZXMdQ6fDmTxGHgq1BuS1RDgqRa2vlyH9x46TNo" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; font-size: 1.0625rem; letter-spacing: -0.41px; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank"><span style="font-family: inherit;">http://www.baltimoresun.com/news/maryland/anne-arundel/annapolis/bs-md-ar-crownsville-black-caucus-20130918-story.html</span></a></p></div></span></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-44650307479378609372021-06-17T23:48:00.002-07:002021-06-18T04:21:02.792-07:00#AutisticWhileBlack: Against The Erasure of Ron'Niveya O'Neal<p> </p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ3KF30DPi6oXfC4deAowgVMMI6QUTyBPjOW1eEh2tzzFD0Hjtn5UCvXtMbt0EzmbOEF2X52wJQpJIX0CMqXacbqB-4071Xi-3_TBJDt2MQr1ATgJyKPHFq6LMe3b4SKxgv353JovA4PkQ/s386/Ronniveyatwo.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="386" data-original-width="306" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZ3KF30DPi6oXfC4deAowgVMMI6QUTyBPjOW1eEh2tzzFD0Hjtn5UCvXtMbt0EzmbOEF2X52wJQpJIX0CMqXacbqB-4071Xi-3_TBJDt2MQr1ATgJyKPHFq6LMe3b4SKxgv353JovA4PkQ/s320/Ronniveyatwo.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ron'Niveya O'Neal, a beautiful <br />Nonspeaking Autistic Girl wearing<br />a filter crown of flowers that <br />match her pattern pink and white <br />sweater.</td></tr></tbody></table><br />On April 7, 2018, the body of 9-year-old Ron'Niveya O'Neal was laid to rest in Tampa, Florida. Ron'Niveya was a beautiful, nonspeaking autistic African American little girl who was brutally murdered by her own father, Ronnie O'Neal III. <p></p><p>I have been following the case. The press had a feeding frenzy with O'Neal III defending himself, shrieking at the jury, and being allowed to cross-examine his now 11-year-old son Ronnie O'Neal IV. Young Ronnie is the only surviving member of that night of familicidal violence. </p><p>Neither the press nor the autism community gave a damn about Ron'Niveya. The media rarely mentions her by name. She is called Ronnie IV's disabled sister, or Kenyatta 'Keke' Barron's daughter. She is the evidence of a double murder. But that is all. Her humanity has been stripped from her.</p><p>I have seen no cries for justice for Ron'Niveya. Was she mentioned in the day of mourning rolls? I honestly don't know. But what I do know is that Ron'Niveya mattered so little to all stakeholders in the autism conversation that no one mentioned her. No one cared. And that, after the entire world view of Black suffering shifted in that wake of witnessing the murder of George Floyd and learning about the shooting death of Breonna Taylor is inexcusable.</p><p> I am posting Ron'Niveya's obituary below. Read it. Remember her not because she is a symbol of violence against nonspeaking disabled youth but because she should matter as much as Alex Spourdalakis mattered. She should matter more than those in our community who sat silently while<a href="https://www.postandcourier.com/john-elder-robison-evaluation-of-dylann-roof/pdf_77ef2c62-370d-11e7-82e9-afde4330bace.html"> John Elder Robison happily provided autism as an excuse for Dylann Roof</a>, someone who premeditated and murdered innocent African American parishioners at Mother Emmanuel AME Church in the hopes of beginning a race war. </p><p>The erasure of Ron'Niveya and so many other nonspeaking autistic children and adults of color like my son made me so angry that years ago I began writing about them. Trying to keep them visible. But now I am much angrier. Because this did nothing to stop the horror of what a high profile autistic white cis male like Robison did while everyone else except <a href="https://autistichoya.net/">Lydia X. Z. Brown</a> and <a href="http://disabilityrights-law.org/user/744">Sam Crane</a> was silent. </p><p>Everything about how Autistic Black people, especially nonspeakers, are treated in this community needs to change. To those who put themselves at risk to demand change happen, to the true allies against ableist racism in our community, thank you for your tireless efforts. You all have my deepest respect. </p><p><b>Obituary (via Integrity Funeral Services) </b>:</p><p>Miss Ron’niveya O’Neil</p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX-D49x23ZYqUT9kjortfDG-5D2h2IGRwX-XCPhRZevkLJKkM-5N5rlpNWKrNCsrDju4Ag3zuAgYCg6fhiQ1AV3hF2n2MG4TyLXEPTkmWvcDghyINsbJOcx02tnukeLhb9BldU85h1BuAg/s1584/Ronniveya.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1584" data-original-width="900" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX-D49x23ZYqUT9kjortfDG-5D2h2IGRwX-XCPhRZevkLJKkM-5N5rlpNWKrNCsrDju4Ag3zuAgYCg6fhiQ1AV3hF2n2MG4TyLXEPTkmWvcDghyINsbJOcx02tnukeLhb9BldU85h1BuAg/s320/Ronniveya.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Ron'Niveya O'Neal, a<br />beautiful brown-skinned girl <br />wearing her natural hair into <br />two high puffs, and huge tulle<br /> pale pink bow and a pink T-shirt<br />with a big white heart at its<br />center with the words 'boy, bye'<br />written in the middle of the heart. </td></tr></tbody></table><br />A Celebration of Life for Miss Ron’niveya O’Neil will be held on Saturday, April 7, 2018 at 11:00 a.m. at Greater New Salem PB Church located at 1605 N. Nebraska Avenue, Tampa, 33602 with Elder Dr. Benjamin Curry, Pastor officiating. Interment will follow at Rest Haven Memorial Park.<p></p><p>Ron’niveya O’Neil was born July 29, 2008 in Hillsborough County to Kenyatta Barron and Ronnie O’Neil. Ron’niveya attended school in Hillsborough County. She attended Foster Elementary and continued on to Corr Elementary. She loved getting up and seeing her Mommy and brother. She loved dressing in pretty clothes and wearing earrings. She loved eating Oreos. She loved seeing her bus driver Terry Wallace and her teachers and Corr Elementary. Ron’niveya is preceded in death by her mother Kenyatta Barron. She leaves her cherished memories to her loving brother Little Ronnie, grandparents Booker Ray and C. Barron. Alonzo McNair and Lisa Smith. Her aunts and uncles Jonathan Barron, Alisha Barron, Javario Barron, Daisatta Baldwin, Sasha Eliza, and Tabario Cobbs. Her great grandparents Samuel and Pamela Barron, and Alvin McNair Sr. </p><p>Her great aunts and uncles Latonya Barron, Teresa Barron, Claire Barron, Inez Foxworth, Sabrina Foxworth, Aretha Foxworth, Josephine Holmes, Carolyn McNeal, Jacqueline Monge, Tony Barron, Simmley Barron, Jimmy Foxworth, Eddie Holmes, Rodney Baldwin. Her cousins, Carrieonna Baldwin, Roslyn Baldwin, Rodneya Baldwin, Destiny Baldwin, Rodney Baldwin Jr., Herashiona Crum, Deontae Barron, Tony Barron Jr. , Randy Barron, Tyler Barron, Olivia Barron, Cynthia Green, Chianita Austin, Tavaris, Cammi, Marcus Nesbitt, Lisa and Elaine McCormick, Joyce Ray, Romaine Wint, and a host of other relatives and friends. A special thanks to the men and women of the Hillsborough County Fire Department, the Hillsborough County Sherriff's Department, and to the various staff at Tampa General Hospital.</p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-44095279638144297222021-02-06T12:30:00.009-08:002021-02-06T23:45:50.629-08:00#AutisticWhileBlack #BlackHistory2021: Vaccination While Black<p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1vaeqzudW8EvvI2jtLLR0MDTrq5KKwuhTl7kxleXj-ldHB5Dy1YgKp_OKwic484sDpp_cdg4sblfpp7IqWhLnNAvtUiHC8LHRmHeZnlzRj8qtpXT7KiaupjaQJNn8MwrRQUPzZdlc9IE/s1885/IMG_Notes_20210207_003740_processed.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1885" data-original-width="1060" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjx1vaeqzudW8EvvI2jtLLR0MDTrq5KKwuhTl7kxleXj-ldHB5Dy1YgKp_OKwic484sDpp_cdg4sblfpp7IqWhLnNAvtUiHC8LHRmHeZnlzRj8qtpXT7KiaupjaQJNn8MwrRQUPzZdlc9IE/s320/IMG_Notes_20210207_003740_processed.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The author, owning<br />The angry Black woman <br />look. Image of a gray haired <br />Black woman with glasses. <br /></td></tr></tbody></table><br />The huge disparities between the agendas of those individuals with the largest platforms who are presented as allies to autism advocacy and the realities of what African American autistic families need to survive have continued for all the years since my son's diagnosis. I try to highlight and speak out, but my voice is tiny. But I am fed up and I'm going to vent now.<p></p><p>Steve Silberman, the author of NeuroTribes, posted this on social media:</p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTKFtLLgjZXxCk12rE-dUyoIKXBb5rWEmSq3qaXYW56l3R5Y9ljozaUFykZNDuEi485xpEXakpk6aCQ0MM2LswNiDdwLFTKhj_0Qrl7VMOfCIBZMMUGyk6A5Clw4sgmjJpxk8qyQoXH3MT/s366/Silberman.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="165" data-original-width="366" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTKFtLLgjZXxCk12rE-dUyoIKXBb5rWEmSq3qaXYW56l3R5Y9ljozaUFykZNDuEi485xpEXakpk6aCQ0MM2LswNiDdwLFTKhj_0Qrl7VMOfCIBZMMUGyk6A5Clw4sgmjJpxk8qyQoXH3MT/w400-h180/Silberman.jpg" width="400" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Steve Silberman: Vaccine envy is a thing.</td></tr></tbody></table><br /><div>I have been trying for months to emphasize the struggles and barriers to our communities of color, particularly my racial peers, having access to vaccination. I have been trying to show the incredible irony between the near gaslighting being done to push vaccination on our people when there is no supply of vaccines to give us. The cruelty of advertising mass vaccination events as "open to the public" at sites that require individuals to have cars when those most vulnerable don't own cars and no public transportation is provided to those sites. In truth, only those who have managed to gain appointments, which require access to the Internet (needs class privilege and access to technology) are allowed at mass vaccination sites, and there can be no mass vaccination without vaccine supply.<div><br /></div><div>Being Black in America during a pandemic means the quality of healthcare given is limited because the staff, equipment, and treatment options that those with race and class privilege have are not available in their <a href="https://www.nbcwashington.com/news/local/prince-georges-county/many-vaccines-given-in-prince-georges-going-to-people-who-live-outside-the-county/2548775/">zip codes</a>. Add racialized autism to these obstacles, and the idea of achieving vaccination becomes a nearly impossible mountain of barriers to climb.</div><div><br /></div><div>Black vaccine hesitancy is discussed in the press and narrowed to one incident when the history of disparity in health services and maltreatment of African Americans continues to this day. Only <a href="https://www.msnbc.com/rachel-maddow-show">Rachel Maddow </a>has spoken to <a href="https://youtu.be/GRiBcuwBeFc">our own people trying to breach barriers to vaccinate us. </a></div><div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/GRiBcuwBeFc" width="320" youtube-src-id="GRiBcuwBeFc"></iframe></div><br /><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: left;">I tweeted about <a href="https://www.wbrz.com/news/virginia-woman-dies-within-hours-of-receiving-pfizer-vaccine/" target="_blank">Drene Keyes</a> going into anaphylaxis minutes after being given the first Pfizer vaccine dose. I am angry that the same excuses for why more of our people are dying from COVID 19 are being used to excuse her death. Her preexisting conditions. This is not the first anaphylaxis reaction to this vaccine. Others have had this reaction so this was a known issue. Why then, was this not thought through before giving the okay for a disabled woman to receive this vaccine? Why is our community not asking these questions? Because the quality of healthcare for the non-racialized disabled population is better than for us.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">My son and I are disabled. No one has bothered to care whether disabled people might die from anaphylaxis after a dose of a vaccine. No authorities have taken the time and care to warn African American patients, a majority of whom have preexisting conditions and low access to quality healthcare services, to wait before getting vaccinated. Instead what we hear, from supposed allies, is pressure to forget the disparities in healthcare that are driving up the numbers of us who die from this coronavirus. We hear that it is a lack of education causing vaccine hesitancy, while hospitals that serve our most impoverished communities demand equipment, medical supplies, and staff to fight the surge in infected patients. Entire families are dying. Our people are pressured to sign up for vaccination appointments when they have no access to the means of signing up. We are told to drive to vaccination sites without a car. We are told to stay at home when our jobs require delivering food, medication, and care to those who can stay in homes without risking eviction for not being able to pay rent. We are told to go to mass vaccination events when there is no vaccine supply. </div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">I want everyone claiming to advocate for autistics and their families to do better. It's time to advocate now by giving us the damn mike since mainstream autism advocacy is clearly ignorant of what has been happening to our community since the beginning of this pandemic. Reach out to your communities and do something to save lives and make this vaccination effort equitable for everyone. We are dying while our supposed allies are posting quips on social media.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">When will those who are supposed to be our allies cease making thoughtless, clueless, cruel statements like "vaccine envy is a thing?"</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">If this is the mainstream idea of allies, miss me with that.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><div class="separator" style="clear: both; text-align: left;">Rant, done.</div><div class="separator" style="clear: both; text-align: left;"><br /></div><br /><div><br /></div><div><br /></div><div><br /></div><div><br /><br /><p><br /></p></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-6380600689170508902020-10-29T13:51:00.016-07:002020-10-31T23:31:47.195-07:00#AutisticWhileBlack: I've Got This<p><br /></p><div class="separator" style="clear: both;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuUc-NIGsAk1-rgKviT9alQPa4nOLQ6yBUSJ9EDdwbIvN2b1pOqVSuBXBMmGiSRX-ttpVesA4auqET5YUl8M1GWJGcNcRqfWttBu3STK7rT2IZ-hG5TYEQtW7nz7KUstQ_HtorXt3DNhF/s1417/IMG_Dragon_20201029_163947_processed.jpg" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: left;"><img alt="Image of a Latinx presenting teen wearing a red tshirt" border="0" data-original-height="1417" data-original-width="1410" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtuUc-NIGsAk1-rgKviT9alQPa4nOLQ6yBUSJ9EDdwbIvN2b1pOqVSuBXBMmGiSRX-ttpVesA4auqET5YUl8M1GWJGcNcRqfWttBu3STK7rT2IZ-hG5TYEQtW7nz7KUstQ_HtorXt3DNhF/w398-h400/IMG_Dragon_20201029_163947_processed.jpg" title="Mu on the keyboard" width="398" /></a></div><span style="font-size: x-small;"><span color="var(--primary-text)" style="background-color: white; font-family: helvetica; text-align: left;"><b><i class="read-aloud">Note, this happened last year. Our school system is closed and virtual this year due to the pandemic. kc</i></b></span><span color="var(--primary-text)" style="background-color: white; font-family: inherit; text-align: left;"> </span></span><span class="read-aloud" style="font-family: helvetica; font-size: medium;">It happens every few homeschool reviews, but each time it happens, especially when I’ve been up all night with an under the weather disabled teenager, my heart sinks. When I reached my table and greeted the reviewing officer, I say “my son has complex support needs and is a nonspeaking autistic teen.” “My daughter’s a BCBA!” she answered. “We have an Asperger’s program at our school.” “I’ve got this.”<br /> I grit my teeth and wait. I know what’s coming and I’m so sleepless! I just can’t today. Not today. And away she goes. </span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />What follows is a long lecture about how incompetent I am to educate my own son. She barely flips through the binder in front of her. I wait for her to pause. “This is his curriculum,” I say instead of responding to something that is actually not legal for her to say to me. I begin flipping through the binder, showing her recent photographs of Mu doing activities, the comprehensive grade report from his online school complete with time spent on each subject lesson, dated, and accompanying worksheets. I start showing his microscope, science lab equipment, apps, books, music and art curriculum, language reports. She finally starts looking at the books and comparing the worksheets to the lesson reports. “Um, well.” “His name should be on the grade report.” “I can’t print anyone else’s grade report out but his, that is the way the online reporting system works.” “Would you like to see the grade report from the online site directly?” (I begin searching for the website on my cell phone. I have only slept two hours. I am trying to hang on to my patience.)</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />“How old will he be again this coming year?” she asks. “He’ll be 18,” I answer, knowing she knows when he will turn 18 from his portfolio in front of her. I know what’s coming. She answers “18 is a big year.” “We can do a lot more for him you know. He can attend school until he is 21.”</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />I wanted to shout “Let’s go over what public special education has done for him until the moment it nearly killed him!” Instead I patiently, painfully, again, repeat the story of how I, a staunch believer in public schools, a product of the public school and DoDDs school systems, decided to give up my job, stay home, and home-educate my disabled Black son.</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />Her smug expression paled, then blanched, then she gasped. Tears came unintended to my face, but I went on, discussing all the harm that led up to the day they “lost” him at school, in the most restricted education environment. How he was “found” by a stranger, an anonymous “member of the local community” who caught him wandering in traffic, a seven-year-old boy who used a wheelchair because of his unsteady gait, who supposedly did not have the OT skills to open a child safety gate, who at the time he went “missing” was in a classroom with a special education teacher, two paraprofessionals, one paraprofessional directly responsible for only him, two classroom aides, and a speech pathologist. A non-speaking autistic little boy who was impossible to miss because he was then in the 98th percentile in height and weight compared to his peers. The school’s story that changed from the telling to retelling, of how long he was missing before they notified us, of why the police weren’t called to search for him, of who found him, of where he had been found [he was found at a nearby pond/ no wandering in traffic] of why he had been washed and redressed and fed grape juice before calling us, of why he was wandering outside on a rainy and windy February day with no shoes or coat, of why he had no shoes or socks on in his classroom in the first place.</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />I had to repeat to this thoughtless, horrible, ableist woman who decided she knew the story of my son’s life, what it feels like when you are a mother with a heart condition who gets a call that your only son is missing and has been missing for an undetermined length of time and your daughter hears a sound come from your mouth that cannot possibly be human, and you don’t remember but suddenly you have called your husband and told him they have lost your baby and your husband grabs his coat and begins running, he runs out the door of his office at Johns Hopkins, runs to Camden Yards station, runs for the train and calls the head of PGCPS and roars that if a hair on his disabled son’s head is out of place, if they don’t find our boy, he would ensure that he won’t be qualified to be so much as a janitor of PGCPS, he will haunt the man the rest of his miserable life and they had better find our boy now and tell us why we weren’t told when this happened.</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />And I tell this arrogant woman how my daughter picked me up from the floor and we grabbed our coats and ran, ran for a taxi and told the man driving hurry, hurry our boy they had lost our boy, and how the police shuffled us from one phone to another and hung up on us and then I asked her if she knew what it felt like to call your son’s pediatrician crying and have the man tell you that it was best if he did an exam for signs of rape, and when he says your son is okay you hug your daughter and son and cry and cry and now the nurses and staff who stayed late to wait for the outcome are crying and saying “no copay today” and now the woman has blanched chalk white and remains quiet.</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />She finally begins really reviewing his portfolio. “You've done an amazing job here, “ she says, her voice breaking. “How..” “My daughter,” I reply. “After the final school incident, she changed her major.” “Went back to school and got a master's in special education specializing in complex support needs and low incidence disability.” “She helps with curriculum and supports my instruction.” “My husband provides the technology and finds things like the microscope that displays on his computer screen. “ He is also the support for my son’s adaptive P.E. work. “<br />She writes approval for the portfolio silently. She says, “we aren’t that county.” “This would never have happened in our school system.“ “I have been told this,” I answer. “But he is my only son. The last child I will ever have. I risked my life to give birth to him. I can’t take the risk he’ll be harmed again. “</span></div><div class="separator" style="clear: both;"><span class="read-aloud" style="font-family: helvetica; font-size: medium;"><br />Another brutal portfolio review is over. I leave, fighting back tears, thinking, “don’t worry son, we’ve got this. “</span></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-16657476352296271012020-08-12T11:37:00.009-07:002020-08-12T13:03:14.985-07:00#AutisticWhileBlack: Race, AAC, and The Right to The Voice of One's Peers<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_32R3Sx6H6FnNnpJjBuDEkHYAOV32xFGicCq9VUslgvR9HqpYKo5fp8mn6f330IQiMpCH4f8uSMnqCy7sYYHr6FP05V08IhDdNdW7goQmRhCka11oRrgZuyXVz6d0-UUV41dYV3rZiciy/s1456/Mu_Rain.jpg" style="margin-left: 1em; margin-right: 1em;"><img alt="Image of the author's son in a hooded raincoat holding an iPad used as his AAC device while looking from his balcony on a rainy day" border="0" data-original-height="767" data-original-width="1456" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_32R3Sx6H6FnNnpJjBuDEkHYAOV32xFGicCq9VUslgvR9HqpYKo5fp8mn6f330IQiMpCH4f8uSMnqCy7sYYHr6FP05V08IhDdNdW7goQmRhCka11oRrgZuyXVz6d0-UUV41dYV3rZiciy/w611-h320/Mu_Rain.jpg" title="Mu Holds his AAC Device On a Rainy Day" width="611" /></a></div><br /><p style="text-align: left;"><span face="" style="font-family: merriweather, serif;"><span style="font-size: 18px;">In 2017, O, the Oprah Magazine, commissioned a famous white photographer, Chris Buck, to deliver a series of shocking photos on the reality of how racial inequality is socialized into the American psyche. The most striking photo is of a white child with long blonde hair standing in front of a shop window filled with Black dolls. </span></span></p><p style="text-align: left;"><span face="" style="font-family: merriweather, serif; font-size: 18px;">Had Oprah's team thought this through, they would have chosen a talented Black photographer to both present the topic and uplift Black photographers from obscurity. But the reality of what life was like for me and all my peers as a child was clearly displayed in that <span style="color: #cc0000;"><b><a href="https://www.mic.com/articles/177195/these-three-pictures-make-a-powerful-statement-about-race-and-power-among-women">script flipped series of magazine photos</a>.</b></span> </span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">Asking me why I want anything specifically African American for my Black autistic son is a highly painful personal question. The answer lies in the reality thrown into stark relief in the photos displayed in that magazine. We are taught through every channel of mass communication that our societal worth is less than whites. This system attempts to subliminally teach us that we are not humans who matter. It is meant to remind us that the world is not made for us.</span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">Our country dictates the scope of our culture and societal value by how we make the dominant culture feel and react, and how we serve and entertain them. These views of speech, beauty, justice are subliminally infused in our daily lives. Our hair is "not right" because the standard of beauty is white hair, which is largely straight. Our speech is "not right" because our English has a lilt and flows like music. It is okay to have a foreign accent but not okay to have an Ebonic one. We were taught to eliminate the Blackness from our voices if we wanted to succeed and lift our race above poverty. It seems to be okay for white people to mimic and mock our speech, or to profit from our athleticism, creativity, and intelligence, but it has been taught to the white majority that to date, the African American Vernacular (AAVE or AAE) is a sign of a lesser command of English rather than a cultural variation. AAE </span><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">has been used to diminish us and make us feel that we are not educated enough or assimilated enough to be acceptable to mainstream society. It has been used to excuse injustices like disparities in criminal justice, healthcare, and work-life benefits.</span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">Asking me why would I want an Assistive Augmentative Communication (AAC) device made to serve my son to have the voice of my Black brother is like asking why I would want my son to have a Black prosthetic arm instead of a white one. The idea of having this option is long overdue. If my son could use verbal speech, his voice would not sound like any of the voices on his current AAC devices. It is a question that shouldn't have to be asked. It matters more than anything that a person has the equivalent of a speech device made for the entirety of who that individual is. And right now, in 2020, that option does not exist for my son and his AAC using Black autistic peers.</span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">But this question is extremely painful for me. There was a brief part of our son's life when he could use verbal speech. Somewhere we have a video of him speaking Turkish to me. It happened when his father was asleep and I was recording. Our son asked if he could have some food. His voice was the African American toddler version of his father's. His Turkish was beautiful. I witnessed that he fully understood the Spanish other toddlers at the playground spoke too. He responded appropriately to all their requests he join them in play and on various pieces of playground equipment. </span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">I am a heritage Spanish speaker. My husband is a heritage Turkish speaker and our daughter is an interpreter and educator. Realizing our son had a facility for being multilingual with the ability to smoothly code-switch from one language to another was one of the happiest days of my life.</span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">Our son still has that talent for a receptive understanding of many languages. But the hope of verbal speech, impeccable AAE/Turkish /English/Spanish with that distinct AAE lilt is gone. The idea that he could have a voice that even slightly resembles the one he lost in his assistive technology is both exciting and heartbreaking. </span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">It is heartbreaking that I must explain why this matters. It is heartbreaking because we are in the year 2020 and it should not have taken this long to realize this need. It is heartbreaking because asking me this question brings a great deal of pain to me. It forces me to remember that generations of our people have had to justify our right to the same quality of life as white American society. It reminds me that I was the little Black girl looking in the window at all the white dolls and not finding any who looked like me.</span></p><p><span face="" style="background-color: white; font-family: merriweather, serif; font-size: 18px; text-align: -webkit-center;">We have a right to the same quality of life white disabled people already enjoy. Asking me to give reasons why a nonspeaking autistic Black teen would need an African American voice on his AAC device shows how much further we need to travel to get there.</span></p><p>P.S. <b>The need for a variety of African American voices on AAC devices is also a matter of hope. Hope that someday, AAC device access will not be blocked by affordability. A disabled Black nonspeaker's right to the assistive technology they need to communicate should not be something unaffordable to most of our people. AAC devices, like prosthetics for physical disabilities, should be available and affordable to all, regardless of race.</b></p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-20844147802671675462020-07-29T00:26:00.006-07:002020-07-29T00:34:53.195-07:00#AutisticWhileBlack: Lift Your Family Out Of Autism Mourning Culture<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVQ-1-sRNP9hwps-ro2VC9okYlMMXYAAuqfHt0bm_Pav6vkNt-vGKBd91OJ4XM7LcZOIZNiqvsbwo6zyPVsDOZ1pFqJvcDkAZXHNcklzG94ONuQfX56jYmOFa6szEn-ojNQAJ7PMOyB5Mc/s4032/2019-05-30.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><font size="1"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVQ-1-sRNP9hwps-ro2VC9okYlMMXYAAuqfHt0bm_Pav6vkNt-vGKBd91OJ4XM7LcZOIZNiqvsbwo6zyPVsDOZ1pFqJvcDkAZXHNcklzG94ONuQfX56jYmOFa6szEn-ojNQAJ7PMOyB5Mc/w240-h320/2019-05-30.jpg" width="240" /></font></a></td></tr><tr><td class="tr-caption" style="text-align: center;"><font size="1">Image of Mu in a red and black t-shirt and black shorts <br />under a canopy that protects him from<br />insects without the use of bug repellent, posted with <br />the permission of the subject. © Kerima Cevik</font></td></tr></tbody></table>Mourning is a word that parents, including me, have misused. Being told by a medical doctor that our son would never improve and would eventually be institutionalized caused my entire family to break down in tears of shock. When we got home after an entire day of grueling tests and traumatic news, my husband, daughter, and I hugged Mu and one another and I vowed he wouldn't see the inside of any institution. Then we helped one another buck up and find ways to teach him and enrich his life.<div><br />We need to be clear about the language we use to describe milestones like diagnosis day in our children's lives.<br />I said this elsewhere I am going to repeat it here. I can't tell people how to govern their emotions. My activism is among other things, against parents and carers who abuse and eventually murder their autistic children. <b>The pattern of abuse in every case, and I mean every case, begins with the appropriation and perversion of the process and meaning of mourning.</b><div><br /></div><div>The Kübler-Ross model of five stages of grief is itself problematic. Yet parent-led autism organizations continue to espouse the appropriation of this model and apply it to parents mourning their children's diagnosis of autism.</div><div><br /></div><div>Quoting the article "<a href="https://www.mcgill.ca/oss/article/health-history/its-time-let-five-stages-grief-die">It's Time To Let The Five Stages of Grief Die</a>" on the topic of applying a hypothesis based on anecdotal interviews on how patients handle a terminal illness diagnosis to any or all manner of grief/mourning:</div><div><blockquote>"Despite the lack of evidence to back up the Kübler-Ross stage theory of grief, its original birthplace, On Death and Dying, has been cited 15 509 times on Google Scholar at the time of writing. It has been applied to everything from the grief processes of those diagnosed with diseases like <a href="http://link.springer.com/10.1007/s12529-013-9312-3">COPD</a> or <a href="http://doi.wiley.com/10.1002/adsp.12031">HIV</a>, to the <a href="https://academic.oup.com/gerontologist/article-abstract/41/5/658/596575">grief experienced by caregivers of those with dementia</a>; patients who have <a href="http://dx.doi.org/10.1053/j.jfas.2014.06.016">amputations due to diabetes</a>; <a href="https://www.ncbi.nlm.nih.gov/pubmed/17007309">doctors who receive low patient satisfaction scores </a>or <a href="http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=emed6&NEWS=N&AN=2004190279">go through reduced resident work hours</a>; even (and I am not making this up)<a href="http://thescipub.com/abstract/10.3844/jssp.2013.11.13"> the grief experienced by consumers after the iPhone 5 was a disappointment</a>."</blockquote></div><div> And we can add to this the constant <a href="https://www.verywellhealth.com/coping-with-grief-after-an-autism-diagnosis-260273">presentation of the same expectation of mourning to autism parents</a>. Parents get caught up in a culture of prolonged mourning. They wallow in it. They escalate their own emotional upheaval by seeking out online groups and followers who perpetuate the cycle of this appropriated mourning culture such that said mourning breeds resentment that combined with chronic insomnia end in harm to autistic youth. </div><div><br /></div><div>So while I began with being sad at the initial news on a diagnosis day, this perpetual mourning was not a thing I did. My family was given our son's diagnosis in the most brutal and clinical way possible. But our son was right there. He deserved better and we understood that. As Mu got older we realized that the temporary reactive sadness we experienced and overcame wasn't the culture of mourning that some other groups of parents were steeping themselves in. We began efforts to seek out parents who saw their children as they were and accepted them without this constant cycle of mourning based upon inaccurate stages of grief not meant for disability diagnosis at all. Eventually, I came across Jim Sinclair's <a href="https://www.autreat.com/dont_mourn.html#:~:text=We%20need%20and%20deserve%20families,We%20are%20alive.">Don't Mourn For Us</a>. After reading it, I felt that our family was on the right path, and we began to actively stay away from groups of parents who pushed this mourning culture rather than discussing what could be done to support and facilitate better lives for our son and his peers.</div><div><br /></div><div>Mourning has a meaning that implies <b><font color="#990000">catastrophic</font></b> loss and that, when your child is <b><font color="#990000">right in front of you</font> </b>and <b><font color="#990000">needs you to be present and supportive</font></b> rather than grieving and disconnected, is, in my opinion, a<b> <font color="#990000">reason for a parent to reach out for mental health counseling until they are in a better place and can see their children as they are without mourning the idealization of a child that never existed.</font> </b>Stepping away from this culture of mourning autistic children opens the door to self-healing and true acceptance of disability. We parents should be given a mental health roadmap from diagnosis day onward. Parents need to be certain they have themselves together when this journey begins. Whatever issues we have, individually and, if applicable, as a couple, need sorting before we can help our autistic children. That begins with the culture presented on diagnosis day. There is no room for medical professionals abandoning hope when the potential of an autistic nonspeaking child is not yet measured. Dumping pamphlets on parents and sending them on their way is not the answer either. We are doing diagnosis day the wrong way. We are creating the beginning of this culture of perpetual mourning that fossilizes into resentment and may potentially escalate to violence against autistic children and youth. </div><div><br /></div><div>I can't speak for everyone. But when my family made a group decision to step away from the parent mourning culture, we began to see progress with our son that professionals were not getting from him. The most important gift any parent can give to their disabled offspring is <b>the understanding that they are loved, they are capable, they are competent</b>. That can't happen if we insist on mourning what we imagine they might have been if disability were not part of their lives.</div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-11159194219784126422020-04-01T04:05:00.002-07:002020-04-01T04:12:23.070-07:00#AutisticWhileBlack: Love In The Age of COVID-19: Patient Rights<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirtiKOpEkBmQTciRqpofbMmPIb8yWph1TSRmdZCIiqsoyIyutct9oDLOvm3wk-ORQFdn4GY0jRERbQFTRJi7s9AF5bQA_p4nvZ9P5OLAcjeXkFdb1T0infchqFbBgKJuLy3FM8Ztpjxfix/s1600/ab9a96e4_o.jpeg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="453" data-original-width="604" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirtiKOpEkBmQTciRqpofbMmPIb8yWph1TSRmdZCIiqsoyIyutct9oDLOvm3wk-ORQFdn4GY0jRERbQFTRJi7s9AF5bQA_p4nvZ9P5OLAcjeXkFdb1T0infchqFbBgKJuLy3FM8Ztpjxfix/s400/ab9a96e4_o.jpeg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cartoon image of the author's son at age five in hospital. <br />
Posted with permission of the subject<br />
Credit Kerima Cevik</td></tr>
</tbody></table>
I have always loved my nonspeaking autistic son, without preconditions or reservations. No pandemic will change my will to fight for his survival. Regardless of the public health crisis, my nonspeaking autistic son has a civil right to receive medical support without the threat of any <a href="https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html">denial of access to life-sustaining healthcare</a>. The casual way political figures and media pundits are dismissing high-risk citizens as inevitable fatalities of this pandemic is terrifying. Remember that<a href="https://www.independent.co.uk/news/world/americas/coronavirus-teenager-death-california-health-insurance-care-emergency-room-covid-19-a9429946.html"> a seventeen-year-old who had no apparent high-risk medical history died from COVID-19 related symptoms after being denied care because he was uninsured.</a> This incident alone should have us questioning a healthcare system that puts getting paid over saving lives. So why has no one been talking about what will happen if nonspeaking autistic patients test positive for this virus?<br />
<br />
Despite the surge of COVID-19 cases in New York, <a href="https://www.nytimes.com/2020/03/28/parenting/nyc-coronavirus-hospitals-visitors-labor.html">Governor Cuomo has issued an executive order that all hospitals allow partners to be with their significant others during the birth of their children</a>. I am asking myself why the governors of all US states and territories haven't issued similar executive orders allowing one parent to be with nonspeaking autistic and disabled offspring with complex support needs should that patient contract COVID-19 and need hospitalization. Is it because they consider our loved ones expendable?<br />
<br />
They aren't. My son and the thousands of children and adults like him have the right to survive this pandemic too. And since disabilities that include verbal communication challenges hinder his ability to advocate for his own life should he become infected with the virus, it is my job as his parent to be there with him.<br />
<br />
I realize the magnitude and consequences of what I am asking. I do not even know, as the number of patients rises if my son would receive treatment. His right and my right to it is being debated as I type this. But if God forbid he contract this novel coronavirus and become so ill that he needs hospitalization I cannot allow him to fight for his life without one of us by his side to make certain he is not discarded because he's disabled. I have had a good life. I am willing to pay the cost to be with him, even if that cost is my own life.<br />
<br />
I watched doctors on social media make some pretty unreasonable excuses for why such denial of care decisions are necessary. <a href="https://www.newshub.co.nz/home/world/2020/03/103-year-old-chinese-woman-becomes-oldest-person-to-survive-coronavirus.html">Yet we know a 103-year-old woman from Wuhan survived the virus. Meaning blanket decisions not to treat any high-risk population-based upon presumptions they won't survive is cruel and inappropriate at best.</a> Our information about this virus, even how it is transmitted is sparse and inconsistent even after four months of heartbreaking attempts to <a href="https://www.chicagotribune.com/coronavirus/ct-coronavirus-baby-death-update-20200330-rlomi5xh2bca3oczsqp7gspd54-story.html">stop the spread of it</a>. Should my son pay with his life for the failure to prepare for this pandemic?<br />
<br />
I am disappointed and angry at the lack of any visible response to these public displays of ableism. With the exception of <a href="https://autisticadvocacy.org/2020/03/congress-must-do-more-for-disability-community-re-covid-19/">ASAN, Self Advocates in Leadership (SAIL), Disability Rights Washington (DRW), The Arc of the United States (The Arc), the Center for Public Representation, and the Bazelon Center for Mental Health Law,</a> no major autism-related organization has acted to defend the right of our loved ones to treatment. I saw immediate and loud protests from parents about public school response to autistic student's IEP requirements being inadequate. I saw parents having meltdowns about not having access to respite care, therapists, and support staff. I have not seen one word from parents who have managed to get their education-related complaints in major newspapers and on television about their autistic children's right to access COVID-19 testing, treatment, and their right to survive. That lack of interest actually scares me.<br />
<br />
There must be other parents and primary care providers asking what will happen to their children if they contract the virus? Has no one else asked why no parent-driven autism organization is coming forward with emergency planning advice for how a single father or mother will manage if they get infected? Does no one lose sleep over the nightmare scenario of watching them wheel patients to isolation wards, and those patients never seeing their loved ones again?<br />
<br />
I have been asking myself things like what should our community be doing to focus attention on the equal right of autistic people to access testing and health care for the duration of the pandemic? What will the greater disability justice community be doing to find ways of opening spaces for our loved ones to access health support for conditions requiring health support unrelated to COVID-19?<br />
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We needed to get COVID-19 related scripts for health advocacy on AAC devices in February. Why didn't autism organizations reach out to speech app software developers and SLPs about this? We need to discuss countering the idea of hospitals considering blanket do not resuscitate orders. Can our organizations join to create homemade masks for primary care, respite, and other staff supporting our offspring? Why has no organization created a video that shows our kids step by step how to wear masks, explain social distances, and explain not touching a hand to face in a manner that is age-appropriate? There is so much that we can do within our community to reduce stress and increase hope but this needs to be organized and executed jointly. I know everyone is in shock but no one seems to care enough to do this for our community when so many others have come together to act on behalf of other high-risk populations. And what I have seen in Op-Eds this year is the usual causation arguments, sales pitches for fundraising, writing about our children as if they were overgrown violent infants who tend to stray, and lamentation of parents instead of needed crisis information and support.<br />
<br />
My last and greatest concern is access to family therapy for families with autistic children who seem to be struggling to manage their offspring at home full time. This may not be an issue for families like mine who have been home educating for years. But in families who spend very little quality time with their autistic children between school, aftercare, therapies, and spring camps, the shock to both the autistic children and their parents is taking its toll. In normal circumstances, the number of filicides is too much. This added stressor may make things that much worse. <a href="https://www.france24.com/en/20200330-france-to-put-domestic-violence-victims-in-hotels-as-numbers-soar-under-coronavirus-lockdown"> Judging from the rise in domestic violence in France since stay at home orders were given my concern that similar harm may come to autistic children and those forced to shelter in place with families that have immediately begun complaining about them being themselves seem valid.</a><br />
<br />
I love my son. I want to be more hopeful about my son's chances to weather this pandemic and survive. That can only happen if our community comes together in greater numbers to champion our autistic loved ones right to survive it. Their survival is much more critical at this moment than just about everything else happening right now. Shouldn't autism organizations be putting that first?<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-39472473344329936862020-01-15T18:32:00.003-08:002020-01-16T06:02:32.328-08:00Cognitive Dissonance and The "Aspergian" Question<div class="separator" style="clear: both; text-align: center;">
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<span style="color: #0b5394; font-family: "times" , "times new roman" , serif;"><b>"The genius of apartheid was convincing people who were the overwhelming majority to turn on each other. Apart hate is what it was. You separate people into groups and make them hate one another so you can run them all."</b></span><br />
<div style="text-align: right;">
-Trevor Noah</div>
<div style="text-align: right;">
<i><b>Born A Crime</b></i><br />
<i><b><br /></b></i></div>
<div style="text-align: left;">
It is my opinion that the history of the term "Aspergian" is so rife with ableism and eugenicist ideology that nothing may redeem it. I say this knowing that had I been born in the late 1980s or 90s, this term, which is today conflated with the term Aspergers, might have been added to my own "gifted" label.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj044_j42LfQJkiKrJWxOKyylZn015okU92a7iBbnpjcdgQOO-I2mECIWCROR58tYeAL6ildkwJuYTgFAgceRbxMyG2xEtvRyLV-Sr1cYvLPXXNjsVTGb4TQaTj55QeFhUkJKx-TSE2KOad/s1600/MuBlueBig.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj044_j42LfQJkiKrJWxOKyylZn015okU92a7iBbnpjcdgQOO-I2mECIWCROR58tYeAL6ildkwJuYTgFAgceRbxMyG2xEtvRyLV-Sr1cYvLPXXNjsVTGb4TQaTj55QeFhUkJKx-TSE2KOad/s320/MuBlueBig.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son is considered Black under the one-drop rule.<br />
He is a diagnosed nonverbal autistic.<br />
Image of a Hispanic male presenting youth with<br />
curly dark brown hair and tan skin clean-shaven in<br />
a wheelchair drinking a bottle of water Image<br />
posted with permission of the subject.© Kerima Cevik </td></tr>
</tbody></table>
In the fall of the past year, I was bombarded with a rage tweetstorm by individuals who felt I was threatening their identity by tweeting my views on the Aspie supremacist nature of the fabricated term 'Aspergian' and for that matter the eugenic past of Asperger himself<span style="color: #990000;"> (<a href="https://www.ncbi.nlm.nih.gov/m/pubmed/29713442/">"He joined several organizations affiliated with the NSDAP (although not the Nazi party itself,) publicly legitimized race hygiene policies including forced sterilizations and, on several occasions, actively cooperated with the child 'euthanasia' program"</a>). </span>Eventually, I chose to stop trying to justify my position or explain it in any way because I realized that no matter what facts I had to back up my points, what I had to say would never be accepted.</div>
<div style="text-align: left;">
<br />
So what I am writing here is for readers who truly want to understand my point of view on the topic of Aspie Supremacy, Aspie Segregationism, the Aspergia Island myth, the error of using the term Aspergian interchangeably with Aspergers and Aspie, and how the language of Aspergian promoters so closely resembles white nationalists post-election attempts to change their lexicon of terms to make white supremacy more acceptable to mainstream audiences that I began to push back against the use of the term Aspergian entirely.<br />
<br />
I also need to remind people that this is my perspective, based on how things are right now in the United States, and how much damage and hatred is harming us all by building these disability hierarchies within already marginalized communities.<br />
<br />
What made me so sure that explaining the link between <a href="https://www.aapd.com/racism-and-ableism/"><span style="color: #0b5394;">eugenics, disability and racism</span></a>, and how this informed the Asperger supremacist philosophies that gave rise to the Aspergia Island concept and later the conflation of the term for citizens of fictional Aspergia, i.e., Aspergians, would make no difference to those people who identify as Aspergians? It has to do with how people hang onto desired identities even when presented with any factual evidence to the contrary. An excellent example of this rejection of any identity viewed as less acceptable to society is the story of Susie Guillory Phipps, and how an unknown fact can induce<span style="color: #cc0000;"> </span><a href="https://www.lexico.com/en/definition/cognitive_dissonance"><span style="color: #0b5394;">cognitive dissonance</span> </a>that results in serious emotional reactions in people.<br />
<br />
<b>Susie Guillory Phipps' Crisis of Racial Identity</b><br />
<br />
Susie Guillory Phipps and her husband Andy went to request her birth certificate to apply for a U.S. Passport needed to travel to Europe. But when Susie got her birth certificate "she was, as she put it, "<a href="https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html"><span style="color: #0b5394;">flabbergasted and sickened</span></a>" to learn "<span style="color: #0b5394;"><a href="https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html">the state's Bureau of Vital Statistics had her down as ''colored.''</a>'</span><br />
<br />
<span style="color: #0b5394;"><a href="https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html">''I'm not light,'' she said, pointing to her face. ''I'm white.''</a> </span><span style="color: #cc0000;"> </span>But the State of Louisiana had a surprise for Susie. A genealogical record going back 222 years to a maternal ancestor, a black slave named Margarita. Margarita was the daughter of white planter John Gregoire Guillory and an unknown slave. So Susie's race was not determined by 222 years of white ancestors but by a 1970 Louisiana law that codified the "<a href="https://news.harvard.edu/gazette/story/2010/12/one-drop-rule-persists/"><span style="color: #0b5394;">one-drop rule</span></a>" meaning if a person had one thirty second percent "negro" blood that made them "colored".<br />
<br />
The idea that she had a black ancestor, even in 1982, was such a shock to Susie Phipps that she upended her entire way of life to reject this truth. She believed she was suddenly not accepted in the most privileged caste of her state. She vehemently denied any ancestry that linked her to the caste of least privilege. The cognitive dissonance was too great. In her own words, "sickened" by the idea she could be "colored", Phipps spent over five years and $20,000 demanding in court Louisiana change her race on her birth certificate to "white." Before the one-drop rule applied to her, Susie probably never gave racial identity a thought. <b>But once such a rule directly impacted her class and race privilege she reconciled a fact about her ancestry by rejecting it.</b><br />
<br />
Informed by eugenics, white supremacy remains part of the structure of society in Louisiana and much of the United States. Even now. Mrs. Guillory Phipps's identity crisis and desperate efforts to get her suddenly 'lost' white privilege back demonstrate that individuals faced with a choice between any uncomfortable revelation that places their perceived identity into a lower status and a pleasant myth that allows higher societal privilege they will choose the myth every time. They will passionately defend the myth, and they will abhor the idea of being associated with anything they view as a less privileged or exclusive identity.<br />
<br />
I began writing about the harm done at the intersections between racism, eugenics, and autism through the stories of individual autistic youth and children when my son was constantly harmed because of these biases against him. Within the autism community, there are parents, professionals, and adults who segregate and classify autistics by their ability to use verbal speech, their degree of disability, the degree to which their autistic loved ones can mask any outward sign of their disability. or their achievement potential. Some parents weaponize complex support needs nonspeaking autistics like my son to justify usurping the right to dominate discourse about autism resources and public policy, thereby controlling funding and decisions about my son's quality of life that should belong to him. Others use the Asperger's label as both a stick to beat their offspring into what they hope will be a path of being indistinguishable from their typical peers and a way to show superiority over parents of nonspeaking, complex support needs offspring. Then there are those folks whose entire identity hangs on carrying the Asperger's label in the way Susie Phipps needed to have the label "white" rather than "colored" to somehow prove her right to access all the privileges of being in what she considered the upper caste of an apartheid-like social system.<br />
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When the American Psychiatric Association updated its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) and renamed the diagnosis Autism Spectrum Disorder (ASD), dropping the sub-diagnoses (Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified, Disintegrative Disorder), all hell broke loose. Parents who wanted complete control of the autism conversation demanded a "severe autism" subcategory. Parents who wanted their children presented consistent with the "little professor" myth and wished to distance themselves from autistics with ID/DD labels wanted to keep their Aspergers labels. Others wanted more. They wanted to be another degree of distance from the rest of those with the ASD diagnosis. They rushed to embrace the fabricated label "Aspergian."</div>
<div style="text-align: left;">
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<div style="text-align: left;">
In 1999, Aspergia Island, an imaginary island state, was created by a group of people who wanted to design a culture in which their genetic differences were a mark of human evolution. They built an online site that tried to establish a full-blown virtual nation, including passports for members, a logo, and an origin myth. The myth of being diasporic refugees from the Aspergia utopia drew a following that filled chat rooms and threads with disturbing rhetoric. They flirted with eugenic based language, the idea that perhaps they, diasporic Aspergians, were the next phase of human evolution. They discussed their own intellectual advantages. While much modifying of the original messaging happened as more information on autism positivity and unity spread online, the underlying message of Aspergian superiority and the emotional need to build an identity of higher status based on the name Aspergian was passionately embraced by those who wished to separate themselves from other autism community members. </div>
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<div style="text-align: left;">
In 2007, <span style="color: red;"><a href="https://en.m.wikipedia.org/wiki/Look_Me_in_the_Eye#Story">John Elder Robison published his memoir Look Me In The Eye</a>. </span>He identified himself as Aspergian, thus doing irreparable harm to the autism community by perpetuating what amounted to a North American rule of hierarchy-of-disability-based hyper/hypodescent to autistic identity. Late diagnosed at 39, Robison spent years dealing with internalized ableism, and this was unfortunately reflected in his writing. Robison's books became bestsellers and expanded the Aspie separatist culture globally. Other famous autistics, most notably <span style="color: #0b5394;"><a href="https://www.autistichoya.com/2013/08/critiquing-temple-grandin.html?m=1&fbclid=IwAR3Ri8miMKzmSWO0fM4ZGVzbibslfcHvKHUCEGMP98Gkw9HwtOJuzuSMWmE"><span style="color: red;">Temple Grandin, was justifiably taken to task</span></a> </span>for making ableist statements against autistic youth with ID/DD labels and complex communication/support needs. In her book Thinking In Pictures, she says<br />
<br />
<blockquote class="tr_bq">
<b>In an ideal world the scientist should find a method to prevent the most severe forms of autism but allow the milder forms to survive. After all, the really social people did not invent the first stone spear. It was probably invented by an Aspie who chipped away at rocks while the other people socialized around the campfire. Without autism traits we might still be living in caves.</b></blockquote>
After 2007, the rift between families wanting to distance themselves from those who could not mask autistic traits and those who did not want funding and support given to autistic children and adults who could pass for typical intensified. The resentment of families whose loved ones required lifetime support and services and who could not mask ID/DD labels became toxic online. Wealthy parents wanting to be free of their complex support needs offspring began using their wealth and influence to lobby for institutionalization. They learned to present institutional settings as less toxic places by changing the labels used to describe them, but this continues to be the goal.<br />
<br />
The Aspergers label is still used in other parts of the world, and it is an identity that those who own the label are so emotionally invested in that like Susie Guillory Phipps, any idea of replacing it with any label of less status causes such cognitive dissonance that people will react as she did and drop everything else to protect the risk they will lose their perceived identity. Those like me who believe that it is critical to understand that autism as a single label allows everyone to receive every right to needed services and health support throughout their lives will continue to be viewed as threats to this need for holding on to the identity of most privilege.<br />
<br />
Parents of those who wish to distance themselves and their offspring from any hint of association with the more marginalized "autism" label continue to demand a return to the Asperger's label in the Diagnostic and Statistical Manual of Mental Disorders (DSM–5). I will continue to state that Aspergian is a harmful term, it should not be conflated with Aspergers or Aspie. I believe that at least here, in the United States, the DSM change that collects all subcategories into a single disability umbrella was the right thing to do.<br />
<br />
My son is autistic. There was never any chance, even when the label existed here, that he would be diagnosed with Aspergers. He is one of the folks autistics like Temple Grandin consider collateral damage and that is not acceptable to me. Everyone who insists on demanding I accept the term Asperigian in this community should take a deep dive into the history of the term, why those who use it refuse to accept factual information about the toxicity of it and explore the internalized ableism inherent in perpetuating a term meant to make those like my son less in a hierarchy of disability to feed their own need for an identity of misperceived higher privilege.</div>
<div style="text-align: left;">
<br />
One last note. Supporters of a magazine that uses the term "Aspergian" insist that Googling the term proves that the magazine's publisher has succeeded in redeeming it. I disagree with this because of the way Google searches work. What these people are viewing are search results based on their personal search histories and preferences, not what will result when anyone else does the same search. "<a href="https://www.wsoaonline.com/does-your-internet-history-effect-google-search-results/">According to Google, personalized search gives them the ability to customize search results based on a user's previous 180 days of search history, which is linked to an anonymous cookie in your browser. </a>... By tracking search results Google attempts to provide the most useful and relevant content based on your search"</div>
<br />
Resources and Further Reading<br />
——--------------<br />
<a href="https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html">https://www.nytimes.com/1982/09/30/us/suit-on-race-recalls-lines-drawn-under-slavery.html</a><br />
<i style="background-color: white; color: #222222; font-family: sans-serif; font-size: 14px;"><b>United States v. Bhagat Singh Thind</b></i><span style="background-color: white; color: #222222; font-family: sans-serif; font-size: 14px;">, 261 U.S. 204 (1923)</span><br />
<a href="https://en.wikipedia.org/wiki/United_States_v._Bhagat_Singh_Thind">https://en.wikipedia.org/wiki/United_States_v._Bhagat_Singh_Thind</a><br />
<div dir="ltr">
<a href="https://www.aapd.com/racism-and-ableism/">https://www.aapd.com/racism-and-ableism/</a><br />
<a href="https://www.tandfonline.com/doi/abs/10.1080/09687599.2013.844104">https://www.tandfonline.com/doi/abs/10.1080/09687599.2013.844104</a></div>
<div dir="ltr">
<a href="https://www.ncbi.nlm.nih.gov/m/pubmed/29713442">https://www.ncbi.nlm.nih.gov/m/pubmed/29713442</a>/</div>
<div dir="ltr">
<a href="http://www.seobythesea.com/2017/08/personalizing-search-results">http://www.seobythesea.com/2017/08/personalizing-search-results</a>/</div>
<div dir="ltr">
<a href="http://www.abovetopsecret.com/forum/thread588498/pg1">http://www.abovetopsecret.com/forum/thread588498/pg1</a><br />
<a href="https://web.archive.org/web/20050207195310/http://www.aspergia.com/ethos.htm">https://web.archive.org/web/20050207195310/http://www.aspergia.com/ethos.htm</a></div>
<div dir="ltr">
<a href="https://web.archive.org/web/20050122053233/http://www.aspergia.com/">https://web.archive.org/web/20050122053233/http://www.aspergia.com/</a></div>
<div dir="ltr">
<a href="https://web.archive.org/web/20170815160144/http://planetaspergia.webs.com/">https://planetaspergia.webs.com</a>/</div>
<div dir="ltr">
<a href="https://web.archive.org/web/20170815160144/http://planetaspergia.webs.com/">http://www.aspergia.com/lead.htm</a><br />
<a href="https://www.autistichoya.com/2013/08/critiquing-temple-grandin.html?m=1&fbclid=IwAR3Ri8miMKzmSWO0fM4ZGVzbibslfcHvKHUCEGMP98Gkw9HwtOJuzuSMWmE">https://www.autistichoya.com/2013/08/critiquing-temple-grandin.html?m=1&fbclid=IwAR3Ri8miMKzmSWO0fM4ZGVzbibslfcHvKHUCEGMP98Gkw9HwtOJuzuSMWmE</a></div>
<div dir="ltr">
<a href="https://en.m.wikipedia.org/wiki/Look_Me_in_the_Eye#Story">https://en.m.wikipedia.org/wiki/Look_Me_in_the_Eye#Story</a></div>
<div dir="ltr">
<a href="https://www.wsoaonline.com/does-your-internet-history-effect-google-search-results/">https://www.wsoaonline.com/does-your-internet-history-effect-google-search-results/</a><br />
<br /></div>
<div dir="ltr">
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<br /></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-62632602781905588372020-01-01T17:20:00.000-08:002020-01-02T00:32:57.310-08:00Power, Disability, and The Realities of Consent<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwq3nZD_qaUGrd6LYac_UyoAT5nf_B7maYhHMQupkC1uEMOBWAS6fb_NcoyH14EJ4hZ6EJ8Uq1hXmxhzGpYBXlCKdSeq4tneS0ksUMZK1fSC21iKXCW_sOY73zldPtwE-20OPHCZstZ6nM/s1600/muplay.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwq3nZD_qaUGrd6LYac_UyoAT5nf_B7maYhHMQupkC1uEMOBWAS6fb_NcoyH14EJ4hZ6EJ8Uq1hXmxhzGpYBXlCKdSeq4tneS0ksUMZK1fSC21iKXCW_sOY73zldPtwE-20OPHCZstZ6nM/s640/muplay.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of Mu, a Hispanic presenting biracial child at age four with short wavy hair wearing a maroon T-shirt, his head<br />
resting on the blue metal rung of the slide he is climbing at one of his favorite playgrounds. Tennis courts can be seen in the background. Image posted with permission of the subject: ©Kerima Cevik </td></tr>
</tbody></table>
Over the past decade, I frequently posted the same few photographs of my son on my blogs and social media, and people would occasionally ask why I didn't post more. There are photographs of my son that he likes, and images he does not like. Sometimes I like images he does not. However, I do not have his consent to post the ones he does not like, even if I think my preferences matter. I now ask my children, both the adult and the disabled teen, for permission before I post any photos of them on any public forum. It isn't something I gave enough thought to before the arrival of this age of deep fakes/extreme photo editing/child predators/online stalking/revenge porn/etc, but it is something I am really concerned about now. I spend serious time agonizing over these questions:<br />
<br />
Does my nonspeaking autistic son really know what it means that his images are on the Internet forever? Have I been able to successfully explain the Internet enough for him to understand the implications of what that means to him?<br />
<br />
<span style="color: #cc0000;"><b>This is really important</b>. </span>Where do my parental rights to share my children's photos end and their rights to individual privacy begin? I decided to write about this on the heels of witnessing a parent doing something we parents do a great deal automatically with little regard to the consequences. We proudly display photographs of our kids during the rite of passage events in their lives. And if our kids are autistic, we insist that come hell or high water, they are going to get their rite of passage event photos too, and we are going to splash them all over social media. But should we do this <b><span style="color: red;">without their consent</span></b>? And what about their worst moments? Should we record and broadcast those moments for all the world to see?<br />
<br />
As my Autistic son is dependent on my care and support, this means I have the power in our relationship. I need to grasp that when I ask a question, he may be afraid I won't like his honest answer. I have to make certain that when I ask my disabled teen son a question, I ensure he is not answering to make me feel better or because he is afraid of giving an answer I won't like.<br />
<br />
What are the repercussions if an Autistic teen does not support what their parents are saying or doing? They may lose quality-of-care, affection, support, even a safe home. They may be institutionalized for being noncompliant. It doesn't take verbal speech for anyone in a position of complete dependence to grasp this. We can't assume that we have their approval or consent unless we have spent years building a trust relationship with them. They must know its okay to say or gesture "no" to you without retaliation.<br />
<br />
Autism consultant Carol Greenberg pointed out that even with precautions, what we parents believe is consent may be compromised by a lifetime of compliance training, trauma, and other factors that might keep our autistic loved one from giving an honest response to our requests.<br />
<br />
I have seen recent instances of parents putting their reluctant autistic teens through rites of passage events, then broadcasting them in the hope they will become viral. What disturbed me about these events was the storytelling language usage by the parents that left the autistic teen a voiceless prop in their own event, the way the parents allowed coverage of each event without regard to their autistic teens feelings on what content and how much content should be disclosed (one autistic teen's mother bragged about calling boys in her daughter's high school class trying to get one of them to take her to the prom), and the infantilization of the autistic person involved.<br />
<br />
And what about autistic people of color who have become public figures after catastrophic harm? While it is important that we know what has happened to them and what is being done to rectify the harm or seek justice, how far can anyone reporting these traumas and their aftereffects go in discussing private health information on public forums without that disabled person's consent?<br />
<br />
I've written about Arnaldo Rios-Soto. He was the subject of a podcast, and there was a moment in that podcast episode that some reviewers didn't grasp the need for but for me could be called the pivotal moment of the entire podcast.<br />
<br />
It happened during then WNYC reporter Audrey Quinn's interview of disability justice advocate <span style="color: red;"><a href="https://www.georgetowntech.org/news-fullposts/2019/lydia">Lydia X.Z. Brown, Esq</a>, </span>on the podcast <span style="color: red;">"<a href="https://www.wnycstudios.org/podcasts/aftereffect">Aftereffect</a>."</span> Brown was asked to comment on their view of other's information about Arnaldo's behavior.<br />
<br />
Brown responded. "<b>I don't know Arnaldo personally, and I think it's inappropriate to be talking about Arnaldo specifically at his worst moments in such a public forum. Because I wouldn't want someone doing that to me. Don't be a predatory reporter.</b>"<br />
<br />
When professor Quinn pressed on about third-hand information regarding Arnaldo's behavioral history, Brown answered: "<b>Is that something that Arnaldo has given you permission to talk about publicly? Because that's a really important question</b>."<br />
<br />
<b>This was a clear reference to Arnaldo's right to give or deny consent.</b> Gaining Arnaldo's consent was something Quinn agonized about doing. I wondered why an attempt wasn't made with the support of a Speech pathologist, using the methods of communication already familiar to Arnaldo, for example, by presenting him with a very brief, illustrative YouTube video in Spanish. What many journalists reviewing the podcast didn't understand was how groundbreaking an interview that emphasized the need to gain the consent of a disabled involuntary public figure to share private information about their behavioral health during moments of complex post-traumatic stress was.<br />
<br />
So let's think about why I'm saying this. Disability justice advocate Brown demanded Arnaldo's behavioral health history not be debated or discussed with strangers in a public forum <b>without his consent</b>. They reminded Quinn that people who have survived trauma will react to trauma (that is what post-traumatic stress disorder literally means) and that such reactions should not be fuel for victim-blaming or mislabeling survivors. They also reminded Quinn that disabled people are people, and like all people, disabled people can be violent, abusive, terrible or compliant, kind, and passive.<br />
<br />
<a href="https://www.bbc.com/news/world-us-canada-49755850">Chanel Miller</a>'s identity was protected during the trial of her attacker. She made a decision to disclose her identity and gain control of the narrative about her experience as the victim of a violent crime. Arnaldo, I realized, was never given that privilege, something that <b>regardless of his degree of disability and CPTSD, he should have had the right to do.</b><br />
<br />
Sometimes people end up memes or subjects of viral social media content and lose agency over a moment in their lives forever. For our offspring, who are forced to live in social structures built to deny them any agency in their own lives, it is up to us to do whatever we must to ensure we truly have their consent to present them in public forums.<br />
<br />
In lieu of general comments, I hope to hear recommendations on how parents can facilitate their offspring's right to give consent even when that person is a nonspeaking autistic youth or adult, and how to support ID/DD children so they gain the confidence to give or deny consent. This also needs to be a discussion on how to help parents reduce fear so they learn to respect a denial of consent from their disabled children.<br />
<br />
Peace.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-66442734060679317002019-12-23T20:09:00.002-08:002019-12-23T22:20:57.090-08:00#AutisticWhileBlack: Seventeen<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8MzKFECS6hEEgWouNVZ95DBnTEvl_asMGgdBTrgjAOeM7QB1UYOEugvSWZw7Y7jalaH6hyphenhyphenX8GZwPhR6c9ZpVUo8jFxUjQAJyNVsSofan1D_FWKYjta2ZDuD4liHLuowX02sk6EeFdHLDe/s1600/00100lrPORTRAIT_00100_BURST20191118171653784_COVER.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="868" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8MzKFECS6hEEgWouNVZ95DBnTEvl_asMGgdBTrgjAOeM7QB1UYOEugvSWZw7Y7jalaH6hyphenhyphenX8GZwPhR6c9ZpVUo8jFxUjQAJyNVsSofan1D_FWKYjta2ZDuD4liHLuowX02sk6EeFdHLDe/s640/00100lrPORTRAIT_00100_BURST20191118171653784_COVER.jpg" width="346" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of a tall, multiracial Latinx presenting male with black cropped<br />
hair, a thin mustache, wearing teal and blue striped polo shirt and<br />
black slacks. He is holding an iPad AAC device in his hand. Image<br />
posted with permission of the subject. Credit and Copyright Kerima<br />
Cevik.</td></tr>
</tbody></table>
Our son is seventeen. He used to enter the month of December gravely ill every year, but we managed to overcome that for so long that this year when he became ill again, it was a shock. The shock reminded me that my nearly completely grown-up son, with his ancestors' looks and a mustache that is the envy of his teen peers, is still very much disabled.<br />
<br />
My son was born in the nation's capital, during the worst snowstorm the DMV had seen in years. We had to try and reach the hospital in a taxi that volunteered to take us when the ambulance, trapped in the snow, could not go further. Everything about his life has been no less dramatic.<br />
<br />
We first met an idealistic nutritionist on the grueling December when he was given the gift of diagnoses. Grueling because the diagnoses were so grim they required we get repeated followup appointments at the Kennedy Krieger Institute to confirm the fears of the pediatric neurologist. Gift, because to define one's disabilities means to understand them. Some can never put a label, prognosis, or plan to theirs.<br />
<br />
Our idealistic nutritionist was in her first month on the job, and as she read our son's chart and smiled at him and us, she gently asked if we could afford organic food for him. She was positive, encouraging. Kind. So it was a shock to believe that when we followed up with her after she became the head of her team and our son was not quite twelve, years of working with nonspeaking autistic youth had turned her into another person. She was rude, short, bitter. "I'm a department head, you need to follow up with someone else." "He's entering puberty. I suggest you get a lock for your refrigerator and hide the kitchen knives." The look of anger and horror on our faces was so apparent, and my husband's sharp angry retort was so loud in the suddenly silent room that she seemed to wake from a jaded dream. She immediately apologized. "Of course I didn't mean to imply your son was violent." Our son was right there. She said these things and he was looking right at her! Why did my husband have to remind her of that? What had happened to this woman after a decade of supposedly providing nutritional services for nonspeaking autistic children?<br />
<br />
Our son is seventeen. We have neither considered nor had the need to bolt the refrigerator. Our knives are not locked away. His absolute favorite thing is baking, and he loves cooking and food culture in general. He has grown into a happy, loving young man. The nutritionist, like so many other professionals who were supposed to be there to help our son but came with attitudes that prejudiced the quality of care he received, were wrong.<br />
<br />
He progressed when they said he could not. He overcame when they refused him the AAC equipment he needed to communicate and the supports he needed to succeed in a traditional classroom. They failed him. And after years of trying to fight for him, I felt like a failure each time I saw other nonspeaking autistic children gaining resources I never knew existed. Until I realized that what made him different was me. All those children, all of them, were not the children of Black women.<br />
<br />
It was an awful moment when this all hit me. My son was having a dermatitis followup and his father was able to take time out from work to come with me to his pediatric clinic. The doctor who had seen him when my daughter and I brought him initially had been rude, dismissive, victim-blaming. When he saw my husband and son he seemed not to recognize me. He was polite, kind, caring. He rechecked his initial findings. He checked our son's bloodwork and gave us a private exam room while doing so. My daughter and I were livid by the end of the visit. It turns out he believed my husband was embassy personnel. When I was just a Black woman with Hispanic looking offspring, my disabled son was a waste of his time and training. That made me realize that my son pays the Black tax for racism directed at me the way bartenders paid the health cost for second-hand smoke.<br />
<br />
We realized that we could not overcome disparities in professional services <a href="https://www.pbs.org/newshour/health/widely-used-algorithm-for-follow-up-care-in-hospitals-is-racially-biased-study-finds">biased by systemic racism.</a> Our son's additional burden of having to overcome the obstacles placed in his path by systemic ableism because he is not an autistic who has verbal speech and he also carries and ID/DD label was so unfair it nearly crushed me. But I am very lucky. I have Mu for a son.<br />
<br />
Mustafa is an incredibly kind, loving, sweet son. So much so that I cannot remain depressed about our chances of surviving in a world where so much disparity and hatred is directed at us. He hugs us and engages us and plays endless sweet, harmless pranks on me. He seems to know when I feel defeated and always comes and sits awhile with me, trying to cheer me up. He is the most hopeful person I've known. It makes me keep going.<br />
<br />
We worried about his weight because we were lectured endlessly about the problems he would have. He was born heavier than his premie peers. But he has, for the most part, learned to control his own eating. We were told he just was incapable of so much. All untrue. It makes me wonder how many families were literally shoved into clinically depressive states by well-intentioned professionals trying to be "realistic" about other people's disabled children.<br />
<br />
What I wish for as we enter this new decade is for someone to look at my son and say he will be alright. Not that he'll survive, but that he will thrive. He deserves to thrive as much as any other nonspeaking autistic transitioning teen. Further, he deserves the chance to thrive as much as anyone his age. I haven't given up hope that I will live to see that happen.<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-91771776289667691172019-12-15T18:23:00.003-08:002019-12-16T11:15:04.430-08:00#SaveArnaldo : How Much Is Lifelong CPTSD Worth? <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHF8pn5QWhjbPf2RkjwuwPP8IMQtCOVxg72-tMJe6Ch4cAzavie64eWEHz8riNdo6cZ3bRLd_KC1_Oufg0DuzhIrr1R8Sg0t_G58Qgwj5FWyCJ-y9lkNAVpMiW3VPQGspGHad7wqi3tjsh/s1600/ArnaldoRS.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="743" data-original-width="553" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHF8pn5QWhjbPf2RkjwuwPP8IMQtCOVxg72-tMJe6Ch4cAzavie64eWEHz8riNdo6cZ3bRLd_KC1_Oufg0DuzhIrr1R8Sg0t_G58Qgwj5FWyCJ-y9lkNAVpMiW3VPQGspGHad7wqi3tjsh/s320/ArnaldoRS.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Image of Arnaldo Rios Soto, a nonspeaking<br />
Latinx autistic young man in a gray hoodie<br />
with crew-cut brown hair and a clean-shaven face<br />
smiling broadly for the camera. Credit<br />
Matthew Dietz, Esq.</td></tr>
</tbody></table>
If your child's school staff, then his residential care home staff, harm your autistic child and one terrible day, you get a call that the behavioral aide your child finally connects with has been shot and your grown child, having survived so much, was shot at while sitting in the street holding his toy truck, handcuffed, interrogated, institutionalized, and now has permanent complex PTSD caused by the mishandling of a catastrophic encounter with law enforcement, can you think of a price tag that with make it all go away?<br />
<div>
<br /></div>
<div>
That final traumatic event, the moment Arnaldo Ríos Soto screams out in his frequent nightmares in the single word utterance "POLICE", cannot be fixed or undone. Any parent of an autistic young adult would hold those responsible to account for the lifelong care he needs. The state of Florida is accountable for Arnaldo's lifelong, 24/7 care and support. This should not even be in question.</div>
<div>
<br /></div>
<div>
So why then was the cost for his lifelong care cut?<b> Lifelong damage was done</b>.<b> Irreparable damage. </b>The kind of trauma Arnaldo experienced <u>cannot be undone</u>. <b>Put simply it is the obligation of those who caused this trauma to care for him. </b><br />
<b><br /></b>
<b><a href="https://www.miamiherald.com/news/local/article236523038.html">Arnaldo was evicted from his home because the state cut the funding needed for his care in half. </a>He was evicted after a contract was signed saying his care facility would continue his care despite the funding shortfall. His former care home should lose their license.</b><br />
<b><br /></b>
I have been steadily updating on Arnaldo's situation because but for the grace of God Arnaldo could be my son.<br />
<br />
<a href="https://www.poormagazine.org/node/5929">I wrote an essay on the eve of Arnaldo's eviction that was published in Poor Magazine</a>, but still, no one seemed to give a damn. So I'm reposting it here. Let's hope someone out there listens this time.<br />
<br />
<br />
<div class="MsoNormal">
<span lang="EN">Arnaldo Rios Soto, Autistic, nonspeaking, and
Latinx, was evicted from his current group home. <span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">His ongoing crisis brought back a personal memory. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">When I was in my teens, I worked summers as
part of the Youth Conservation Corps. One of our projects was assisting efforts
to reclaim the Palso strip mine. A group of us were standing with our supervising
forest ranger on the top of a mountain of slag looking at miles of blasted
fields and ponds filled with acid runoff when suddenly the rubble beneath us
shifted and three of us tumbled downward with the landslide. The other two
managed to stop and scurry back up. But each time I moved, the mountain seemed to
respond by raining more debris around and over me. It was an avalanche. I was
sure I was going to die that day. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">If we were to create a timeline of each pivotal
event in Arnaldo Rios Soto’s life, I believe those traumatic moments would
morph into a rubble mountain of suffering and trauma. Arnaldo has now seen the
ground shift beneath him one too many times. An avalanche is happening, and
Arnaldo, like me the day I hung suspended on a slag mountain, is scraped,
bruised, too young to die. The detritus of a failed disability care system
falling like rubble all around him, he has now been evicted from another group
home on the excuse that money was cut from his care budget. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Arnaldo’s life is measured by how much profit he
makes for those who offer services to house and care for him. His family’s
lives have been punctuated by seeking the land of autism care Oz, that place
where Arnaldo won’t be beaten, chemically lobotomized, where someone, anyone,
can truly see him as a human being and not a collection of behavioral reports,
untreated complex PTSD and medications. They are tired, burnt out with
disappointment in that shattered dream of an American mainland utopian
disability care system they sacrificed and journeyed from Puerto Rico for in
vain. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">What will happen to Arnaldo now?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span lang="EN">What happens to Arnaldo now is up to all of
us.</span></b><span lang="EN"> We are his family now. He is in our care. So we
need to understand how and why Arnaldo matters. Arnaldo’s situation is greater
than his news headlines. His situation right now is bigger than my personal
emotional reaction, informed by the fact that he once looked so much like our
son that both my husband and I cried out in shock when we saw that video of him
sitting in the middle of the street, holding his toy truck, police shouting and
Charles Kinsey shot and bleeding beside him.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN"><span style="mso-spacerun: yes;"> </span>It is
greater now than Arnaldo not understanding that he was about to tumble down
that cruel mountain of police interrogation for the crime of sitting in the
street holding a toy truck while disabled and brown. Arnaldo is now the symbol
of what it means to be a nonspeaking autistic male of color at the mercy of a
system that views the Black and Brown disabled body as a threat. This system,
founded on eugenic attitudes, views those with complex support needs as burdens
or cash cows. When the profit margin is not enough the cash cow is sent to the
slaughterhouse. For someone like Arnaldo, who was harmed by agents of the
state, leaving him without shelter and the complex support he needs is
tantamount to destroying his psyche entirely. And returning him to a hellhole
institutional setting like Carlton Arms is unthinkable and unacceptable. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">What that means is that what happens to
Arnaldo now has the potential to impact how future cases like his are handled
across our country<b>. If we can act together</b> and change his destiny it
will demonstrate that our community has the power to transform the destinies of
others brought low by this system. It means that the lifetime efforts of
hundreds of disability justice activists have managed to change something. We
need this hope because we multiply marginalized people have become the targets
of hate groups instigated by those who feel that the current administration has
given them a free license to hunt those who are oppressed and vulnerable. So
what I am doing right now, typing, wheezing with asthma, pushing past joints
that ache to write this is reaching out to say this is the time when all of us,
<b>ALL OF US</b> can help Arnaldo. <b>#SaveArnaldo</b> can trend on every
social media platform enough to make those who made the decision to cut funding
for Arnaldo’s care rethink their decision. Organizations can support the<span style="color: #cc0000;"> <a href="https://autisticadvocacy.org/">AutisticSelf Advocacy Network</a>’</span>s leadership and issue statements in support of the Sotos
family. Legislative advocates can reach out to their lawmakers. This takes a
few moments, a click, a retweet. But multiplied exponentially, collective cross-disability community action could be an avalanche that forces a positive
resolution to Arnaldo’s crisis. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">As I was sliding down a mountain of slag
towards my death, two other people volunteered to lay flat, one grabbing the
ankles of the other, and acted as a human rope. Five others held on to the arms
of the person laying flat on the top of that mountain for dear life. Then they
all heaved up and backward. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Together, they saved my life.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">I am asking you all to make a human and
virtual chain. Get him off that sliding bureaucratic slag mountain and back
into a place where his family can see him every day and he can be safe and
cared for. <b>#SaveArnaldo</b>. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Peace.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Poor Magazine Lays out My position on
catastrophic encounters with Law Enforcement:<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN"><a href="https://poormagazine.org/node/5510">https://poormagazine.org/node/5510</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Read and hear more about Arnaldo:<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN">Miami Herald coverage of Arnaldo's eviction CN: for Ableism</span></div>
<div class="MsoNormal">
<span lang="EN"><a href="https://www.miamiherald.com/news/local/article236523038.html">https://www.miamiherald.com/news/local/article236523038.html</a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Aftereffect: Against the Erasure of Arnaldo
Rios Soto<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN"><a href="http://theautismwars.blogspot.com/2019/02/affereffect-against-erasure-of-arnaldo.html">http://theautismwars.blogspot.com/2019/02/affereffect-against-erasure-of-arnaldo.html</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Aftereffect: A SWAT team, an autistic man, an
American tragedy.<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN"><a href="https://www.wnycstudios.org/podcasts/aftereffect">https://www.wnycstudios.org/podcasts/aftereffect</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">Podcast: Aftereffect — an indictment of
America’s disability care<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN"><a href="https://www.ft.com/content/b2187ace-8685-11e8-9199-c2a4754b5a0e?segmentid=acee4131-99c2-09d3-a635-873e61754ec6">https://www.ft.com/content/b2187ace-8685-11e8-9199-c2a4754b5a0e?segmentid=acee4131-99c2-09d3-a635-873e61754ec6</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN">On catastrophic encounters between disabled
youth and men of color with law enforcement specific to Arnaldo’s case:<o:p></o:p></span></div>
<div class="MsoNormal">
<span lang="EN"><a href="http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html">http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html</a><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<br /></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-54900855077698668022019-09-11T11:14:00.002-07:002020-01-07T17:41:45.708-08:00Distorting DEEJ: Deconstructing A Misinformed Literature Review <div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-left: 30pt; margin-right: 30pt; margin-top: 0pt; text-align: right;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://images.squarespace-cdn.com/content/v1/57f6bc3b9f745647f7f27ac7/1487918191928-GRZDIQJJC4FU2XAYEHCA/ke17ZwdGBToddI8pDm48kNp9j8M5mo73QhfdLv9_3sR7gQa3H78H3Y0txjaiv_0fDoOvxcdMmMKkDsyUqMSsMWxHk725yiiHCCLfrh8O1z4YTzHvnKhyp6Da-NYroOW3ZGjoBKy3azqku80C789l0jAoOkRmPE63FUjiJOEKAz7ljAXSm4MD16OZQW4eOghnJZA8g8hLCWnaGBPf4Mt3Gw/DeejPress5.jpg?format=1500w" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="524" data-original-width="800" height="208" src="https://images.squarespace-cdn.com/content/v1/57f6bc3b9f745647f7f27ac7/1487918191928-GRZDIQJJC4FU2XAYEHCA/ke17ZwdGBToddI8pDm48kNp9j8M5mo73QhfdLv9_3sR7gQa3H78H3Y0txjaiv_0fDoOvxcdMmMKkDsyUqMSsMWxHk725yiiHCCLfrh8O1z4YTzHvnKhyp6Da-NYroOW3ZGjoBKy3azqku80C789l0jAoOkRmPE63FUjiJOEKAz7ljAXSm4MD16OZQW4eOghnJZA8g8hLCWnaGBPf4Mt3Gw/DeejPress5.jpg?format=1500w" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Production photo of David Jame Savarese (Deej) a thin white male with short,</span><br />
<span style="font-size: xx-small;">cropped hair and glasses, wearing a light blue polo shirt and beige slacks, seated</span><br />
<span style="font-size: xx-small;"> at a table facing his girlfriend who is seated in a power chair back to us, facing him.</span><br />
<span style="font-size: xx-small;"> A man holding a camera is standing to their left and caught in the act of filming them.</span><br />
<span style="font-size: xx-small;">©DEEJ movie <a href="https://www.deejmovie.com/press">https://www.deejmovie.com/press</a></span></td></tr>
</tbody></table>
<br />
<br />
<b>"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data."</b> Wikipedia on Confirmation Bias<br />
<br />
I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with the conclusion that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write <b>why</b>.<br />
<br />
I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called <a href="https://www.smithsonianmag.com/science-nature/disturbing-resilience-scientific-racism-180972243/">scientific racism</a>. Scientific racism, at its core, is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups. <br />
<br />
I am also very outspoken about the unjust treatment of <a href="http://theautismwars.blogspot.com/2018/08/autisticwhileblack-against-miseducation.html">autistics like my son</a>. Full disclosure, my son is non-speaking and uses an iPad with the appTouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar. <br />
<br />
Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC using non-speaking autistic adult with complex support needs. This kind of representation—outside of stereotyping in media for us people of color—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.<br />
<br />
So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary revisits facilitated communication pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned.<br />
<br />
Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to<a href="https://skepticalinquirer.org/2019/03/respectful-skepticism/"> skepticism</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6493720/">concussion non-disclosure research</a>. I wonder why he chose this topic? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation. <br />
<br />
Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From <a href="https://www.nytimes.com/2018/05/09/books/review-aspergers-children-autism-nazi-vienna-edith-sheffer.html">Asperger’s Nazi collaboration</a> to the debacle and destroyed lives of <a href="https://archive.org/details/emptyfortressinf00bett_0">Bruno Bettleheim</a>’s expansion of Kanner’s<a href="http://content.time.com/time/subscriber/article/0,33009,798484,00.html"> “refrigerator moms” view of autism</a>, to <a href="https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html">Ivar Lovaas</a> and his<a href="https://www.wired.co.uk/article/what-is-gay-conversion-therapy"> conversion therapy cruelties</a>, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given <a href="https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments">electric shock punishments at the Judge Rotenberg Center</a> “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence. <br />
<br />
Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.<br />
<br />
Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.<br />
<br />
I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.<br />
<br />
To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering tenure at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.<br />
<br />
If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as <a href="https://en.wikipedia.org/wiki/Goldwater_rule">the Goldwater Rule</a>. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.<br />
<br />
Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.<br />
<br />
As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage. "<br />
<br />
I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.<br />
<br />
Foster plowed ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."<br />
<br />
Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month,<a href="https://tanksgoodnews.com/2019/07/08/little-girl-autism-broken-heart-dress/"> a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear.</a> Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.<br />
<br />
Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.<br />
<br />
I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations<br />
(e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing, the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."<br />
<br />
Let's address the topic of FC generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't discuss the reality that this brief used two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects. How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had specialized<a href="https://www.aacap.org/aacap/Policy_Statements/1990/Guidelines_for_the_Clinical_Evaluation_for_Child_and_Adolescent_Sexual_Abuse.aspx"> training for this type of investigation</a>. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.<br />
<br />
We are current witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.<br />
<br />
Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a characteristic associated with pseudoscience."<br />
<br />
But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?<br />
<br />
I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there." I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.<br />
<br />
Foster's unconcerned opining of Deej's degree of disability is very similar to t<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161737/">he racial bias found in medical doctors</a>. = I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statement,: "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."<br />
<br />
I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.<br />
<br />
I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with <a href="http://www.ncsl.org/research/health/autism-and-insurance-coverage-state-laws.aspx">mandated insurance coverage in most states</a> despite valid ethical concerns verified by recent <a href="https://www.emeraldinsight.com/doi/abs/10.1108/AIA-08-2017-0016">research into ABA and PTSD in autistic clients</a>. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion methods while dismissing the support of individuals who have physical barriers to typing.<br />
<br />
While Foster included a non-apology to Deej's family consistent with his policy on <a href="https://skepticalinquirer.org/2019/03/respectful-skepticism/">respectful skepticism</a>, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.<br />
<div>
<br />
And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.<br />
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-----------------------------------<br />
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<br />
Nickerson, Raymond S. (June 1998), "Confirmation bias: A ubiquitous phenomenon in many guises", Review of General Psychology, 2 (2): 175–220<br />
<br />
<br />
Foster CA. Deej-a Vu: Documentary revisits facilitated communication pseudoscience.<br />
<br />
<br />
Behavioral Interventions. 2019;1–10<a href="https://onlinelibrary.wiley.com/doi/abs/10.1002/bin.1687"> https://onlinelibrary.wiley.com/doi/abs/10.1002/bin.1687</a><br />
<br />
<br />
Foster, CA. Skepticism at heart is not partisan. Skeptical Inquirer 2017<br />
<br />
<br />
<a href="https://skepticalinquirer.org/2017/01/skepticism_at_heart_is_not_partisan/">https://skepticalinquirer.org/2017/01/skepticism_at_heart_is_not_partisan/</a><br />
<br />
<br />
Hagiwara, N., Slatcher, R. B., Eggly, S., & Penner, L. A. (2017). Physician Racial Bias and Word Use during Racially Discordant Medical Interactions. Health communication,<br />
<br />
<br />
32(4), 401–408. doi:10.1080/10410236.2016.1138389<br />
<br />
<br />
Confirmation Bias<br />
<br />
<br />
<a href="https://en.wikipedia.org/wiki/Confirmation_bias">https://en.wikipedia.org/wiki/Confirmation_bias</a><br />
<br />
<br />
Kupferstein, Henny (January 2018) “Evidence of increased PTSD symptoms in autistics exposed to applied behavior analysis” Advances in Autism ISSN: 2056-3868<br />
<br />
<br />
<a href="https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html">https://www.emerald.com/insight/content/doi/10.1108/AIA-08-2017-0016/full/html</a><br />
<br />
<br />
UN calls for investigation of US school's shock treatments of autistic children<br />
<br />
<br />
<a href="https://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism">https://www.theguardian.com/society/2012/jun/02/un-investigation-shock-treatments-autism</a><br />
<br />
<br />
School Shocks Students With Disabilities. The FDA Moves To Ban The Practice.<br />
<br />
<br />
<a href="https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments">https://www.npr.org/2019/01/23/687636057/massachusetts-school-defends-use-of-electric-shock-treatments</a><br />
<br />
<br />
The Legacy of the Civil Rights Act of 1964<br />
<br />
<br />
<a href="https://www.history.com/topics/black-history/civil-rights-act#section_4">https://www.history.com/topics/black-history/civil-rights-act#section_4</a><br />
<br />
<br />
Bruno Bettleheim, The Empty Fortress<br />
<br />
<br />
<a href="https://archive.org/details/emptyfortressinf00bett_0">https://archive.org/details/emptyfortressinf00bett_0</a><br />
<br />
<br />
Leo Kanner's infamous 1947 Time Magazine interview that began Bettelheim's destruction of autistic children and their mothers with quotes like "The children, says Dr. Kanner, were "kept neatly in a refrigerator which didn't defrost."<br />
<br />
<br />
<a href="http://content.time.com/time/subscriber/article/0,33009,798484,00.html">http://content.time.com/time/subscriber/article/0,33009,798484,00.html</a><br />
<br />
<br />
Siegel, B. (1995). Brief report: Assessing allegations of sexual molestation made through facilitated communication. Journal of Autism and Developmental Disorders, 25(3), 319–326. doi: 10.1007/bf02179293<span id="docs-internal-guid-22f28433-7fff-052b-3c0b-dd0782a34499"></span><br />
<div dir="ltr" style="background-color: white; line-height: 1.68; margin-bottom: 0pt; margin-top: 0pt; padding: 0pt 0pt 0pt 16pt; text-indent: -16pt;">
<span style="font-family: "trebuchet ms" , sans-serif;"><span style="background-color: transparent; color: #333333; font-size: 10pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hansson, S. O. (2013). Defining pseudoscience and science. In M. Pigliucci, & M. Boudry (Eds.), </span><span style="background-color: transparent; color: #333333; font-size: 10pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Philosophy of pseudoscience</span><span style="background-color: transparent; color: #333333; font-size: 10pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">: </span><span style="background-color: transparent; color: #333333; font-size: 10pt; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Reconsidering the demarcation problem</span><span style="background-color: transparent; color: #333333; font-size: 10pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (pp. 61–77). Chicago, IL: University of Chicago Press. https://doi.org/10.7208/chicago/9780226051826.003.0005</span></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-58038988273752321822019-07-28T05:22:00.000-07:002019-07-29T16:25:44.315-07:00Forcing Friendships Doesn't Equal Autistic Youth Gaining Social Skills <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghjbTLS5yJ2fVkcUdON4UGMB_iwlZd6-EXFdxoua8-fvaclyu-EjAzdhRh4koD4NUDb1QZALAP1tKhaIG8NQqnkG063osL8uiwaKncOrt3L1HOJJHhcriwkzcQQekPtU9nNmgt2sQgKMgf/s1600/11169570_10206189752209959_490265792029069043_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="616" data-original-width="1079" height="227" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghjbTLS5yJ2fVkcUdON4UGMB_iwlZd6-EXFdxoua8-fvaclyu-EjAzdhRh4koD4NUDb1QZALAP1tKhaIG8NQqnkG063osL8uiwaKncOrt3L1HOJJHhcriwkzcQQekPtU9nNmgt2sQgKMgf/s400/11169570_10206189752209959_490265792029069043_o.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son's first friendships were with family. Image of a hug between Mu and<br />
his adult big sister. His back is to the camera. His sister is smiling.<br />
Posted with the permission of the subjects. Image by their father, Nuri Cevik.</td></tr>
</tbody></table>
"How do I handle my child seeing the children of every new family who moves into the neighborhood surrounding us included in outdoor play knowing he is being excluded from the group?"<br />
<br />
I saw another parent posting this question as one of the most frequent questions autism parents ask as their kids become preteens and teenagers and I cringed a bit. It is a common concern for all families with autistic youth trying to navigate a world where they are often othered and mistreated. My son and I also see them when we hang out on our deck or the backyard in the summer or on snow days. Kids his age, teenagers, will for the most part either ignore him, ridicule him, or ask to do his respite care to fulfill their community service requirement at school. <b>They never ask him what he wants.</b><br />
<br />
That last bit is particularly anger-inducing. Asking for my son as if you are doing me the favor of walking the family dog is dehumanizing to my son in a dismissive way that reeks of ableism on steroids. These are not the kinds of interactions that will help him build the self-confidence he will need to navigate this world after his father and I are gone. He needs to understand that random people may be ableist and some people are dangerous. He needs to know that some will offer friendship as a ruse to some other end. He must be given the chance to interact enough to grasp the differences between true friendship and all other types of approaches.<br />
<br />
My son is not just Autistic. He is the son of a Black woman. <b>Survival social skill</b> building is a requirement of being Black in America. Like code-switching to gain access to better education and employment opportunities, knowing who hates you and what that looks like can keep you alive. In approaching/considering my son’s interactions with others, my racial and ethnic experiences inform my stance on his human rights.<br />
<br />
Parts of my childhood were spent in areas where my siblings and I were the only African American children in predominantly white neighborhoods and schools. We were in North Carolina in 1972, where "This is Klan Country" billboards appeared on highways in several parts of the state. We never lived or went to school with the expectation of friendship. We were taught to survive the environments, which were for the most part hostile to us.<br />
<br />
My mother was an educator. Her parenting flaws were legion but she had a tendency to rise like a phoenix in times of adversity. When I came home at age twelve with a bruise on my cheek asking what an n-word was, she pulled out an unabridged dictionary and had me look it up. Then she told me in terms that I could understand what this slur was meant to do and why it was untrue. We discussed how I would handle my bullies. She warned that even those in authority might hold biases and turn away while I was being beaten and how to reduce situations ripe for being dragged off and beaten up at school in the future.<br />
<br />
My mother said something to me back then that was life-changing. She said people were not required to like me or befriend me. They were required to respect my right to exist, to move in the same space, and to be treated equally under the law.<br />
<br />
That is what I want my son to learn. I want him to know, as an Autistic person, that he can choose to befriend someone or not. An autistic young person has the right to have an active and willing agency in the process of deciding who to befriend, what boundaries should be set on such friendships and who they are just not comfortable with. Before any of that can happen, they must understand <b>not to comply with every demand made to them from everyone</b>. They need to understand <b>they have a right to say no to people</b>. And they need to know what kinds of behaviors are abusive and wrong.<br />
<br />
But I don't see this happening with parents. The focus is on finding friends, even finding dates when children become teens and adults, without assessment or understanding of their children’s needs, wants, or ability to protect themselves from harm. This goes hand in hand with the belief that friendship by any means necessary with "normal" teens will "rub off." As long as parents force friendships their autistic kids will someday go to sleep at night and wake up magically typical in the morning. Any sign of intolerance from their autistic offspring for whatever the parent views as ideal social interactions with peers is then a behavioral challenge needing to be imposed not only on the disabled child but on peers in the neighborhood. This escalates to pleas to communities to create normalizing events by inducing pity for the autistic child or young adult to elicit a response from the schools, friends, or neighbors.<br />
<br />
I hope I never embarrass my son by blasting a social media demand that someone come and befriend him without his consent. He played with other children on playgrounds until he didn't wish to go to them anymore. The noise of a gaggle of young folk filling a sidewalk and refusing to yield to his wheelchair is not particularly pleasant for him. If the nondisabled peers who are his neighbors don't even have the courtesy to yield when needed unless he glares at them, how can I as a parent demand that those same teens befriend him?<br />
<br />
Contrary to assertions that these forced experiences are a necessary part of the social skills process, the aggressive demand of parents that other teens interact or befriend their autistic teen can backfire by being offputting. Negative responses from teens cliques/groups parents wish their autistic teen was part of are <b>NOT </b>teachable moments. My view is that my son is a human being, not a social science project. He doesn't exist to teach his nondisabled peers tolerance.<br />
<br />
Two cautionary tales of autistic teens irrevocably harmed by the mistaken parental idea that somehow they had neighborhood friends are the cases of the autistic teen boy in Ohio who was assaulted by five teen males with bodily fluids during a<a href="https://www.cleveland.com/court-justice/2014/11/three_bay_village_students_cha.html"> faked ice bucket challenge</a>, and the case of an autistic teen boy who was<a href="https://baltimore.cbslocal.com/2014/03/13/2-teenage-girls-accused-of-torturing-autistic-classmate/"> systematically tortured</a> during snow days and holidays by two teen girls. In both cases, parents spoke of insisting their teens leave with their abusers, even when they showed reluctance to do so.<br />
<br />
The parents spoke of being relieved their offspring had made friends with typical neighborhood peers. They had no idea their children were being victimized by their "friends." The need for the parents to want their children to have friends in order to make parents feel better overrode possible red flags about these relationships they might have spotted immediately otherwise.<br />
<br />
In contrast, every person who has genuinely befriended my son has come directly to him, not me, and extended their hand or signed to him or asked him if he would like to sit with them. They made it clear to my son that they wanted his friendship and their intent was transparent. And yes, they knew he was a nonverbal autistic. They only asked how he communicated, respected boundaries, and made an effort to find activities that allowed him to see us and understand he could return to us anytime he wished.<br />
<br />
My point is simple. We parents shouldn't push friendships on our autistic children because we think they need to have them to reach a goal of being indistinguishable from their typical peers. We shouldn’t presume their incompetence at acquiring friends or berate them for not having any or enough friends. We should not create or force participation in events requiring typical partners and then send social media lamentation that our kid is autistic and has no friends when things don't go well. What parents do by this behavior is to broadcast across a global platform that they have a vulnerable disabled person who is friendless. They broadcast that they are willing to force their autistic loved one to comply with anyone who presents themselves as a potential friend to them. This destroys our young people’s self-worth, reinforces the belief that they must comply with everyone’s demands, and leaves them with a sense of helplessness and lack of agency in their own lives.<br />
<br />
Look at what your autistic offspring like, what they want and how they navigate the world first. Consider what would work for them. Then sit with them and however they communicate with you, explain consent and boundaries. Only when parents are certain their autistic teens want friendship facilitation and understand boundaries and consent should friendship facilitation happen with the active agency of the autistic teen. Otherwise, this is about us, not them.<br />
<br />
P.S. Friendship facilitation does not mean broadcasting your teen's lack of friends online or trying to gaslight other teens into taking them to events like homecoming dances, proms, or birthday parties. It means looking for meetups and events that will be accessible to your autistic teen, asking them <b>if they want to participate, and allowing them to leave if and when they wish.</b><br />
<br />
This could save our children from irreparable trauma.<br />
<br />
Peace<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-33290445356092449132019-02-25T09:31:00.002-08:002019-03-04T00:55:53.535-08:00AfterEffect: Against The Erasure of Arnaldo Rios Soto<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1gkaSVxvBMcIrWtX_CFgKL72domTJKFUgAUb3q7ABRMtfeWuqH9218xwW0ogOFkoh79uLjRTEIEAgB5nKAdWu3ezTZ0tDeNsdaydZsJXQJ1dN5wk7lJPwWZlW4N-KnTV-ANj6CrM_v7Yk/s1600/IMG_2558.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1gkaSVxvBMcIrWtX_CFgKL72domTJKFUgAUb3q7ABRMtfeWuqH9218xwW0ogOFkoh79uLjRTEIEAgB5nKAdWu3ezTZ0tDeNsdaydZsJXQJ1dN5wk7lJPwWZlW4N-KnTV-ANj6CrM_v7Yk/s400/IMG_2558.jpeg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Arnaldo Rios Soto, a Latinx male presenting autistic man with dark curly hair<br />
wearing a gray t-shirt is holding a brown and tan teddy bear and smiling at the<br />
camera.</td></tr>
</tbody></table>
<span style="color: red; font-size: x-large;">T</span>oday, the police officer who shot Charles Kinsey goes on trial. I read a news report describing how Mr. Kinsey has not recovered from the trauma of being an unarmed Black man doing his job and trying to tend to his client and explain to the police that he and his client were unarmed and trying to cooperate. The police officer claimed he was not trying to shoot Mr. Kinsey. He wanted to shoot his autistic client, <a href="https://www.miamiherald.com/news/local/crime/article226624549.html">Arnaldo Rios Soto</a> instead.<br />
<br />
It is important to note that<a href="https://www.miamiherald.com/news/local/crime/article226624549.html"> police radio notified officers</a> that Arnaldo was holding a toy, and officers 20 feet away did not feel under threat. Quoting Mr. Rios Soto's attorney, Matthew Dietz, in the Miami Herald:<br />
<br />
“I can’t believe that every other officer heard on the radio that it was a toy,” Dietz said. Aledda “aimed, but couldn’t hit a 250-pound man sitting cross-legged on the ground, and he’s a SWAT member? If he was aiming at Arnaldo, he’s the worst shot in the world.”<br />
<br />
Arnaldo was a passing mention in the story of the aftermath of this tragedy. In fact, the story of what happens to Arnaldo is told in heartbreaking detail on the podcast Aftereffect, which you can listen to by clicking this link: <a data-saferedirecturl="https://www.google.com/url?q=https://www.wnycstudios.org/shows/aftereffect&source=gmail&ust=1551200133127000&usg=AFQjCNGxrJjHaRgM8R9-3ItzTRO8Hu4dew" href="https://www.wnycstudios.org/shows/aftereffect" rel="noreferrer" style="background-color: white; color: #1155cc; font-family: Arial, Helvetica, sans-serif; font-size: small;" target="_blank">https:/<wbr></wbr>/www.wnycstudios.org/shows/<wbr></wbr>aftereffect</a><br />
<br />
There were two victims of color that day, Mr. Kinsey and Arnaldo Soto. One was an African American carer, the other was his Latinx and autistic client. There shouldn't be a hierarchy of victims that makes the victim struck by the bullet intended for the other the main protagonist in this horror story. I find it sad but not surprising that this news article uses the power of words to leave Arnaldo a voiceless footnote in his own tragedy.<br />
<br />
Arnaldo has paid a devastating price for wanting to take a walk away from his group home. He was targeted because he was autistic and wandering in the street on a route usually taken with Mr. Kinsey, clutching his toy truck. Arnaldo was unjustly arrested, he was placed in the mental health equivalent of hell for too long. Despite his story having a happy ending of sorts (I mean, he's still in a group home), the memories of that day will haunt Arnaldo for the rest of his life, just as they haunt Charles Kinsey.<br />
<br />
I think we need to remind the media that today, the police officer who alleged he aimed to shoot Arnaldo Rios Soto, an autistic young man of color, missed and shot his support staff member, Mr. Charles Kinsey, instead.<br />
<br />
<b>Read more about Arnaldo, Autism, and catastrophic encounters with law enforcement:</b><br />
<br />
<a data-saferedirecturl="https://www.google.com/url?q=https://www.wnycstudios.org/shows/aftereffect&source=gmail&ust=1551200133127000&usg=AFQjCNGxrJjHaRgM8R9-3ItzTRO8Hu4dew" href="https://www.wnycstudios.org/shows/aftereffect" rel="noreferrer" style="background-color: white; color: #1155cc; font-family: Arial, Helvetica, sans-serif; font-size: small;" target="_blank">https:/<wbr></wbr>/www.wnycstudios.org/shows/<wbr></wbr>aftereffect</a><br />
<b>The low key ableist news article:</b><br />
<a href="https://www.local10.com/news/local-10-investigates/charles-kinsey-still-haunted-by-memories-of-police-involved-shooting"> https://www.local10.com/news/local-10-investigates/charles-kinsey-still-haunted-by-memories-of-police-involved-shooting</a><br />
<b>Other references</b><br />
<a href="https://www.miamiherald.com/news/local/crime/article226624549.html">https://www.miamiherald.com/news/local/crime/article226624549.html</a><br />
<a href="http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html">http://theautismwars.blogspot.com/2016/08/mustafas-dilemma.html</a><br />
<a href="http://nosmag.org/arnaldo-rios-autistic-man-charles-kinsey-police-shooting/">http://nosmag.org/arnaldo-rios-autistic-man-charles-kinsey-police-shooting/</a><br />
<br />
<br />
<br />
<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-1106220117509307832018-10-10T21:52:00.000-07:002018-10-14T20:07:56.493-07:00#AutisticWhileBlack #SaveDarius Criminal Justice in Black and White<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaES5yfvHpADLxg9rutyiKVSYn6U9lO1EHyHsJpNKyiw7KOEzWca_WP1WEcHhmWHzBHwijibjJTl16cSx55O60f1hsRquDAGMeoKFnHuf0XfFY9pKu7EjyhaO39qIKUTtZo72YAOLqMiE/s1600/Darius_McCollum_3Off_The_Rails.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="667" data-original-width="1000" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVaES5yfvHpADLxg9rutyiKVSYn6U9lO1EHyHsJpNKyiw7KOEzWca_WP1WEcHhmWHzBHwijibjJTl16cSx55O60f1hsRquDAGMeoKFnHuf0XfFY9pKu7EjyhaO39qIKUTtZo72YAOLqMiE/s320/Darius_McCollum_3Off_The_Rails.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Darius McCollum image of an older African American Male<br />
with a short full beard. A blurred rail car behind him.<br />
He is wearing a black ski cap, black coat with a dark blue<br />
zipped up inner lining. Image credit Adam Irving</td></tr>
</tbody></table>
<br />
<b>“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”</b><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;">― </span><span class="authorOrTitle" style="background-color: white; color: #333333; font-family: "lato" , "helvetica neue" , "helvetica" , sans-serif; font-size: 14px; font-weight: bold;">Ta-Nehisi Coates, </span><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;"></span><span id="quote_book_link_25360188" style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; font-size: 14px;"><a class="authorOrTitle" href="https://www.goodreads.com/work/quotes/44848425" style="color: #333333; font-family: Lato, "Helvetica Neue", Helvetica, sans-serif; font-weight: bold; text-decoration-line: none;">Between the World and Me</a></span><br />
<br />
Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.<br />
<br />
I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.<br />
<br />
Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.<br />
<br />
But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut- punched in the truth that <b>everything</b> lands with great violence upon the black body.<br />
<br />
Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every <a href="http://intersecteddisability.blogspot.com/2014/11/making-neli-latson-matter-invisible.html">Neili</a>, <a href="https://www.wnycstudios.org/shows/aftereffect">Arnaldo</a>, and Darius' path?<br />
<br />
At age 53, the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used of the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.<br />
<br />
I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. When he was in another state, I wondered why it was not okay to give him a small bus, a supervised rural bus route, and allow him to spend the remainder of his days driving it. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.<br />
<br />
What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?<br />
<br />
Sometimes it is easier to see the reality of this when side by side comparisons happen. So let's look at turning points in the lives of two teenagers with the same diagnosis of Aspergers.<br />
<br />
Blogger <a href="https://brobrubel.com/2011/12/28/autism-in-black-and-white/">Brobrubel</a> summarizes criminal justice and government overreach by reminding us of what justice looked like for Jack Robison, and Neili Latson both were teens with a diagnosis of Asperger's Despite the use of an ableist definition of autism, Brobrubel shows the disparity in our criminal justice clearly.<br />
Here is his 2011 essay, <a href="https://brobrubel.com/2011/12/28/autism-in-black-and-white/" style="font-style: italic; font-weight: bold;">Autism in black and white</a><i style="font-weight: bold;">.</i><br />
<br />
<i style="font-weight: bold;"></i>Please read it and try and understand the reality of being Autistic While Black in America.Then share this, and remember that we who are African American are the first to feel this weight of violence but we are not the last. Injustice expands like a balloon if those who believe they are protected from it ignore it.<br />
Peace.<br />
<br />
<div class="entry-content" style="background-color: white; border: 0px; color: #373737; font-family: "Helvetica Neue", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0px auto; outline: 0px; padding: 1.625em 0px 0px; vertical-align: baseline; width: 584.266px;">
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
"The Web site <a href="http://liquornspice.tumblr.com/post/14840454248/white-supremacy-autism#wrapper" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;">Liquor & Spice</a> caught this in the New York Times this weekend involving a 19-year-old kid named Jack Robison in Massachusetts with <a class="zem_slink" href="http://www.webmd.com/brain/autism/mental-health-aspergers-syndrome" rel="webmd" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;" title="Mental Health Aspergers Syndrome">Asperger’s syndrome</a>, a form of autism:</div>
<blockquote style="border: 0px; font-family: Georgia, "Bitstream Charter", serif; font-style: italic; margin: 0px 3em; outline: 0px; padding: 0px; quotes: "" ""; vertical-align: baseline;">
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
" A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the <a class="zem_slink" href="http://www.atf.gov/" rel="homepage" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;" title="Bureau of Alcohol, Tobacco, Firearms and Explosives">Bureau of Alcohol, Tobacco, Firearms and Explosives</a> to charge him with several counts of malicious explosion."</div>
</blockquote>
<blockquote style="border: 0px; font-family: Georgia, "Bitstream Charter", serif; font-style: italic; margin: 0px 3em; outline: 0px; padding: 0px; quotes: "" ""; vertical-align: baseline;">
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
" By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory."</div>
</blockquote>
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
" And then caught this information involving <a href="http://www.change.org/petitions/pardon-wrongfully-convicted-autistic-youth-neli-latson" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;">a case in Virginia</a>".</div>
<blockquote style="border: 0px; font-family: Georgia, "Bitstream Charter", serif; font-style: italic; margin: 0px 3em; outline: 0px; padding: 0px; quotes: "" ""; vertical-align: baseline;">
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
"Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, Va., and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his <a class="zem_slink" href="http://en.wikipedia.org/wiki/Miranda_warning" rel="wikipedia" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;" title="Miranda warning">Miranda Rights</a> or calling for backup.</div>
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the <a class="zem_slink" href="http://www.webmd.com/brain/Autism/autism-spectrum-disorders-pervasive-developmental-disorders" rel="webmd" style="border: 0px; color: #882451; font-family: inherit; font-style: inherit; font-weight: inherit; margin: 0px; outline: 0px; padding: 0px; text-decoration-line: none; vertical-align: baseline;" title="Autism Spectrum Disorders Pervasive Developmental Disorders">autism spectrum</a>, ... "</div>
</blockquote>
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
" Massachusetts didn’t see a crime in making explosives at home. Virginia saw a crime in waiting to go to the library. Robison was blowing things up. Latson was waiting for the library to open. Robison is rewarded. Latson is going to jail."</div>
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
" "Robison is white. Latson is black." </div>
<div style="border: 0px; font-family: inherit; font-style: inherit; font-weight: inherit; margin-bottom: 1.625em; outline: 0px; padding: 0px; vertical-align: baseline;">
"We don’t want to admit it, but race does matter."</div>
</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-62725263079501441892018-08-31T16:01:00.001-07:002018-09-20T20:47:00.558-07:00#AutisticWhileBlack: Against The Miseducation of M. Cevik <blockquote class="tr_bq" style="text-align: right;">
<div style="text-align: center;">
<b><span style="font-family: inherit;">“When told we could not be educated, we went out in the woods, we dug a pit, and when somebody learned to read, they’d sneak out at night, go down in that pit with a light, and teach [others] how to read, because it was that important.” Today, for black home educators, “it’s still that ‘each one, reach one’” mentality, she explained. “It looks different, but it harkens back to who we are, who we have been in our educational history.”</span></b></div>
<div style="text-align: right;">
<br /></div>
<span style="font-family: inherit; font-size: x-small;">
</span>
<br />
<div style="text-align: center;">
<div style="text-align: right;">
Cheryl Fields-Smith<br />
Associate Professor of Educational Studies<br />
University of Georgia </div>
<div style="text-align: right;">
<a href="https://www.theatlantic.com/education/archive/2018/05/black-homeschooling/560636/">The Radical Self-Reliance of Black Homeschooling</a></div>
</div>
</blockquote>
I watched social media bloom with the photos of other people's disabled children ready for their first day of school. From the parents of twice-exceptional autistic offspring to those who have what they feel is a great school or outstanding teaching team for their nonspeaking children, the parade of photos with running commentary from proud parents was a conundrum for me. I was happy for all of those families but I understood they had no grasp of how that display of pride, that lack of understanding of privilege would feel to parents who didn't have the advocacy or means or demographics to send their disabled students off without trepidation. Children and young adults were photographed and ushered off, everyone secure in their right to be safe and educated. I sometimes wonder what that sense of entitlement must feel like.<br />
<br />
I am the Black home educator of my high support needs autistic son. This path to educating him was neither planned nor expected to succeed. I have my son to thank that so far, it has.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRfKlbiiM6VojEd0M9R1EzO4YNiDrdU_gToOYVTxus0VijNDoXbW2Opkc08HxUhwcTcU_qxBrX3e-ilyVGIzbU25SGwYl1f3_IeBLj1Z8xKXHIDIFSJtWOPs9PhpAQ6vpG5UglvZ1J9Z10/s1600/FB_IMG_1535735833630.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRfKlbiiM6VojEd0M9R1EzO4YNiDrdU_gToOYVTxus0VijNDoXbW2Opkc08HxUhwcTcU_qxBrX3e-ilyVGIzbU25SGwYl1f3_IeBLj1Z8xKXHIDIFSJtWOPs9PhpAQ6vpG5UglvZ1J9Z10/s320/FB_IMG_1535735833630.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Electric Light and Switch built by Mustafa Cevik, Image of a<br />
snap circuit DIY project to build a light and switch completed<br />
in the foreground. In the background, an instruction book with a<br />
diagram of the project and written instructions can be seen.</td></tr>
</tbody></table>
Our enormous push against the miseducation of Mu is the latest episode in the history of how the Black and Brown branches of our family tree struggled to gain literacy and numeracy. As I am typing this, countless other people fight for the right to be literate in America, while countless others give no thought at all to having that right, because for their loved ones it is never denied.<br />
<br />
Education is something our elders risked their lives for. I carried that weight when I joined the first generation of African American children to attend public schools after <b><i><a href="https://www.history.com/topics/black-history/brown-v-board-of-education-of-topeka">Brown v Board of Education of Topeka.</a></i></b><br />
<br />
I was a girl brought back to her stepfather's hometown and forced into the nearest school in a neighborhood where we were the only African American family. My older sister, younger brother and I integrated a rural, all-white school mostly filled with the offspring of farmers.<br />
One of the many moments in that history, during my early teen years, happened when I sat watching the tiny black and white portable television my stepfather had built for us to watch in our rooms. The news showed mobs of white adults from <a href="https://apps.bostonglobe.com/spotlight/boston-racism-image-reality/">Boston</a> throwing bricks and whatever else they could find at buses full of students like me.<br />
<br />
It was a sobering moment. All those people who might feel justified in lynching us for the skin we were in, feeling they were losing something by our gaining the same constitutional right to a public education they enjoyed.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3SyrKNQdm6QSR_jBL40U_5B4uf4w0RWUSXH_Whm747WT18mkP3EWIN4P0XDj7IYGziw9jaovJpjrX3dfYViNyZvNZIc7WbnAHmujqVU7N4cApdxzWlev14rfY6Qv1nMVXOR0Eby-oaXlx/s1600/backAwarsI.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="786" data-original-width="1048" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3SyrKNQdm6QSR_jBL40U_5B4uf4w0RWUSXH_Whm747WT18mkP3EWIN4P0XDj7IYGziw9jaovJpjrX3dfYViNyZvNZIc7WbnAHmujqVU7N4cApdxzWlev14rfY6Qv1nMVXOR0Eby-oaXlx/s320/backAwarsI.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first homeschool field trip was to beautiful Art Deco<br />
Greenbelt. Mu is in a yellow winter coat, his college student<br />
big sister is wearing a green AmVets jacket. They are facing<br />
Greenbelt's mother and child statue. Image by Kerima Cevik</td></tr>
</tbody></table>
Then there was the moment my grandmother sat me down to have a serious talk about my honor roll winning grades. My grandmother told me she was proud of me, but I was to settle for lower grades. She emphasized to me that my life depended on not being significantly better than the white students. It was devastating to be told to pretend to be less intelligent than my white peers so as not to put myself at risk of bodily harm.<br />
<br />
Public school for me and my peers was unjust and sometimes dangerous. Forty years later, the reality for many Black and Brown<b> disabled </b>students like my son seems to be equally unjust and at least as dangerous.<br />
<br />
Our family learned the hard way that the reality of a Free Appropriate Public Education (FAPE) equal to nondisabled peers, like the reality of an equal, and nonsegregated education, didn't live up to the promise of either the <i style="font-weight: bold;">Individuals with Disabilities Education Act </i><b>(IDEA</b><i style="font-weight: bold;">) </i>or<i style="font-weight: bold;"> </i><i><b>Brown v Board of Ed</b></i>.<br />
<br />
We had to argue for our son's right to FAPE. We fought to ensure his safety while he was trapped in school placements where IEP teams strove to gaslight us into believing that our son could not be educated, therefore services and supports for him weren't worth the school budget.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFyWtax5_h2Brw5bWOUB-RUO4FRadbNAU9Ks0wUIi9gI0AD4ZqJ1xkTZhGRmE8wX1u4w_dcdtX5KMs9kWYLZ6OWVyPZeMbErzEsTfPrcLKYGOLGGZKPG-qmk7qlPcP5UJ1zgtICaSV4udY/s1600/IMG_20180831_175908.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFyWtax5_h2Brw5bWOUB-RUO4FRadbNAU9Ks0wUIi9gI0AD4ZqJ1xkTZhGRmE8wX1u4w_dcdtX5KMs9kWYLZ6OWVyPZeMbErzEsTfPrcLKYGOLGGZKPG-qmk7qlPcP5UJ1zgtICaSV4udY/s320/IMG_20180831_175908.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An image of a page from Mu's 3D textbook,<br />
<i><b>The Human Body</b></i> by Miller and Pelham<br />
displaying a 3D popup image cross-section<br />
of the human heart. </td></tr>
</tbody></table>
<div>
I have been homeschooling my nonspeaking high support needs autistic son since a series of abuses in school escalated to a point where his school principal called to say that while she was off campus at a scheduled meeting the staff had "lost" him. That day we nearly lost our son for good. The reality of public educational life for my son despite the protections that IDEA was meant to provide him left us horrified. We realized they had no real intention of educating him and his life would remain in jeopardy as long as we stayed in that county's school district.</div>
<div>
<br />
We knew our son's degree of disability. We presumed our son was competent. We believed all children could be taught. We wanted him to be educated.<br />
<br />
We have been home educating for nine years. He's a teenager now.<br />
<br />
This is the hardest thing I have ever attempted in my life.<br />
<br />
In his first year of homeschooling, our daughter helped me find a certified Montessori special education teacher who recommended a special education curriculum and resources for building him a Montessori environment at home. My husband began to buy equipment, school supplies, hardware, and software and acted as Mu's physical ed aide and Mu's sister became his homeschool paraprofessional while continuing her college education.</div>
<div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
We dove into his education passionately, perhaps against their miseducation of Mu and the harm done him by people who were supposed to protect and educate him.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK4SUVi97IVjl7QewA9buB4O2MdZEq9GIXOhG-cg_dEOUr43qbQ-5hIR85jksI2haxGatgAZ3_gJfUxBxQU-ARTaiQxk6nJa8T8kj57btg_s9Ick3s4MqI8mmoDRmtERxx9-J8d18wCz_J/s1600/7873724859121893538%253Faccount_id%253D1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhK4SUVi97IVjl7QewA9buB4O2MdZEq9GIXOhG-cg_dEOUr43qbQ-5hIR85jksI2haxGatgAZ3_gJfUxBxQU-ARTaiQxk6nJa8T8kj57btg_s9Ick3s4MqI8mmoDRmtERxx9-J8d18wCz_J/s320/7873724859121893538%253Faccount_id%253D1" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tyrannosaurus Rex's head bursts out of Mu's textbook<br />
on Dinosaurs. These beautiful books combine stunning visuals<br />
with information that is appropriate for all ages.</td></tr>
</tbody></table>
I was incredibly fortunate. Mu's big sister decided to get her masters in special education and make her specialization multiple and high support need disabilities. She and I now build curriculum and instruction to fit his individual needs as he grows up and she follows through to see how he is progressing. This kind of individualized education planning and life skills consulting would be unaffordable otherwise. Both my daughter and my husband have introduced all manner of tools and texts to enrich his learning environment. This has helped Mu relax and overcome a great deal of his hesitation for learning.<br />
<br />
I learned that home educating was different from any classroom teaching I'd done. It takes an extreme degree of dedication and patience from both teacher and pupil. You must adapt and accommodate for your pupil's disabilities.<br />
<br />
You give up your rights to just being a parent several hours a day, seven days a week. You have to measure progress and sometimes begin again. You cannot give up. Your child is depending on you. What that means some days is both of you taking things one breath at a time. This is our narrative. No advice, no judgments, just knowing that we must synchronize the ebb and flow of facilitating and absorbing learning without preconditions or forcible compliance. We reached this moment one breath at a time.<br />
<br />
Some parents are great at getting their children what they need within this broken system. Others are great at supplementing where the system fails. For Black and Brown parents choices may seem limited, but in the age of technology, enrichment exists if we know where to look for it. I have had a very singular life, and part of it gave me an odd collection of skills that helped me help my son. Most importantly, Mu wants to communicate. He wants to learn. So he puts forth the effort and I don't push him to some point of frustration.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMFpQF1HyvR9Pq3hyUxLp-R1GV81cqDbphT6sIWa5vnZKr_GjxgP8ch1MwFrJmUDh1dY-iUaktvDtfHbnaTu5Cph7XLYrTsOT7qn_Rgl5N44_LWMDYBsL-eLyXln7MNoUGsDXJWS60PtoF/s1600/Mu+Swim.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1600" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMFpQF1HyvR9Pq3hyUxLp-R1GV81cqDbphT6sIWa5vnZKr_GjxgP8ch1MwFrJmUDh1dY-iUaktvDtfHbnaTu5Cph7XLYrTsOT7qn_Rgl5N44_LWMDYBsL-eLyXln7MNoUGsDXJWS60PtoF/s320/Mu+Swim.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Homeschool Adaptive P.E.,: Musti with his Dad in the pool,<br />
learning to float Image of a Brown young man with curly<br />
brown hair floating in a swimming pool supported by his father,<br />
a white male with dark hair whose back is to the camera.<br />
@ Kerima Cevik</td></tr>
</tbody></table>
There are activists out there fighting to preserve our children's right to FAPE in safer, nonsegregated public school settings. We believe in the work of those activists but found ourselves making the choice an increasing number of parents of Black and Brown children are making when public school districts fail their children. We were pushed to dig an educational pit, light a candle, go into that pit with our child, and teach our son what we know. What we have gained from being at home is understanding our son without barriers. We wake up knowing our son is safe; a happy and stubborn scholar who has regained his curiosity and zest for exploring and learning again.<br />
<br />
Mu has taught me how to interact with him, and how to understand how he communicates. I have learned to help facilitate his learning rather than make his learning a series of demands with rewards for compliance and deprivation for shows of frustration and errors. When we see how this process empowers him, my fatigue dissolves, my regrets fade, I focus on my son, and I press on. Regardless of what the future holds, these years with my youngest child have been precious, no first day of school photoshoots or bragging rights required.<br />
<br />
Time to light my candle and get back in that pit. Peace.<br />
<br />
--------------------------------------<br />
Further Reading:<br />
<b><a href="https://peabody.vanderbilt.edu/faculty/pje/pje_volume_88_issue_3_2013/fields-smith_kisura.php">Resisting the Status Quo: The Narratives of Black Homeschoolers in Metro-Atlanta and Metro-DC</a></b></div>
<a href="https://ollibean.com/surviving-inclusion-at-the-intersection-of-minority-disability-and-resegregation/"><b>Surviving Inclusion: At The Intersection of Minority, Disability, and Resegregation</b></a><br />
<div>
<b><a href="https://ollibean.com/on-surviving-inclusion/">On Surviving Inclusion</a></b></div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-18865286828396086582018-07-24T16:37:00.001-07:002018-07-24T23:45:21.231-07:00#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers<div class="entryHeader" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-color: white; border: 0px; color: #333333; font-family: sans-serif; font-size: 12px; margin: 0px; padding: 0px;">
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<tr><td style="text-align: center;"><img class="pinable" data-image-enhancer="larger than third of 645" data-original="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" data-pre-sourced="yes" data-sourced="yes" data-src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" id="image1" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); border-radius: 3px; border: 1px solid rgb(239, 239, 239); display: block; margin: 3rem auto 0rem; max-width: 647px;" /></td></tr>
<tr><td class="tr-caption">The author's idea of what supporting autism positivity looks like:<br />
Image of a Black woman over 50 with braided gray hair wearing<br />
a Neurodiversity 3.0 by <a href="https://www.facebook.com/thinkgeek/">ThinkGeek</a>, a black T-shirt with a world globe<br />
design on the upper chest area in the shape of a human brain,<br />
colored in physical map fashion i.e., water is colored light blue<br />
and land masses green, clouds white, looking to her left<br />
over bent wire-rimmed glasses in that way that mothers look at<br />
their children when an outrageous behavior has just ensued</td></tr>
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<span class="pinContainer" style="background-color: white; clear: left; color: #333333; float: left; font-family: "slab serif" , sans-serif; font-size: 0.9375rem; margin-bottom: 1em; margin-right: 1em;"><span class="pin" data-page-action-input="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" data-page-action="pinImage" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-image: url("images/ab-pinit.v4.png"); background-size: 56px 28px; cursor: pointer; height: 28px; margin-left: 5px; margin-top: 5px; opacity: 0; position: absolute; transform: translateY(-5px); transition: opacity 0.2s ease-in-out, transform 0.2s ease-in-out; width: 56px; z-index: 5;"></span><span class="epin" data-page-action-input="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" data-page-action="epinImage" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-image: url("images/ab-epin.v4.png"); background-size: 28px 28px; cursor: pointer; height: 28px; margin-left: 65px; margin-top: 5px; opacity: 0; position: absolute; transform: translateY(-5px); transition: opacity 0.2s ease-in-out, transform 0.2s ease-in-out; width: 28px; z-index: 5;"></span><span class="opin" data-page-action-input="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg1rXdc2xja-7D-GtmRLeK2T5C2D4FHf93bf5EcGE-Z-x0Lt5VqqZnx9Ez8Ggrw55_WejhtPLTKntbklzsj5CaEni3VeOVr9XWCrR37_w4tH_jvvs1zo7-JkN-v2wywZHDBtf_ui64-fVO/s320/12079680_1043605509023246_1540818065507154179_n.jpg" data-page-action="opinImage" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-image: url("images/ab-opin.v4.png"); background-size: 28px 28px; cursor: pointer; height: 28px; margin-left: 97px; margin-top: 5px; opacity: 0; position: absolute; transform: translateY(-5px); transition: opacity 0.2s ease-in-out, transform 0.2s ease-in-out; width: 28px; z-index: 5;"></span></span><span style="background-color: white; color: #333333; font-family: "slab serif" , sans-serif; font-size: 0.9375rem;"><br />There is an article in a paper called The Daily Net, about singer </span><a href="https://thedailynet.com/read/entertainment/celebrity-autism-celebrity-autism-inspirational-motivational/dlh?utm_campaign=facebook&utm_medium=17488&utm_source=dlh" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); background-color: white; border-bottom: 1px solid rgb(204, 204, 204); color: #333333; font-family: "Slab Serif", sans-serif; font-size: 0.9375rem; text-decoration-line: none;" target="_blank">Toni Braxton's 16-year-old son Diezel</a><span style="background-color: white; color: #333333; font-family: "slab serif" , sans-serif; font-size: 0.9375rem;"> working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.</span><br />
<br style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);" />
<span style="color: #333333; font-family: "slab" serif , sans-serif;"><span style="background-color: white; font-size: 0.9375rem;">Apparently, when her son was 13 Ms. Braxton was told he no longer met the criteria for autism. According to this article, she goes on to say:</span></span><br />
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<span style="color: #333333; font-family: "slab" serif , sans-serif;"><span style="background-color: white; font-size: 0.9375rem;">“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”</span></span><br />
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I beg to differ. <span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"><b style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">There is no cure for autism.</b> </span></div>
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This is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism treatments is a misnomer that confuses parents<b style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"></b>. These interventions<b style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> <span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">do not cure autism</span></b>. They suppress visible signs of neurodivergent minds forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them such that they blend in with nonautistic peers. </div>
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<b style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">This is not a cure</b>. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors may later manifest in "formerly autistic" adults as mental health challenges and PTSD. </div>
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A parental declaration tantamount to a demand that Diezel should not display any sign that he is autistic has been issued for public consumption from a mother who has no understanding of being autistic except to view her son's brain as an enemy he must fight and defeat. Is telling your adult son to hate his own brain and how it works a good thing? This sounds more like the very definition of how internalized ableism happens. </div>
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Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic.<br />
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Presumption of a cure because the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health and other supports they may need to access going forward. </div>
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It is truly harmful to hold up an autistic teen and call him formerly autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life or save it. </div>
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He is the son of a celebrity so his life at this moment might appear significantly better than his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community and wrong.</div>
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This type of rhetoric, along with parading her teen son around as inspiration porn could have other parents exerting increased pressure on their own offspring to be "formerly autistic" and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic it could irrevocably harm them. </div>
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<tr><td style="text-align: center;"><img class="pinable" data-image-enhancer="larger than 645" data-original="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhug95Q6z_mAqA0Cf5zbbjfEKBWM2dLst5D-5RN6nMK6vS_nUAsnaHFjhyVdNUYO2YgSvA9DcrF9A6N4adJ0vzkp8-L7AR_W29UkVgM9N_u4rn9Gf3ZuEPfedQJP0WjYqOnihgxMCMur3No/s320/12716330_1106310262752770_3294014449240159521_o.jpg" data-pre-sourced="yes" data-sourced="yes" data-src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhug95Q6z_mAqA0Cf5zbbjfEKBWM2dLst5D-5RN6nMK6vS_nUAsnaHFjhyVdNUYO2YgSvA9DcrF9A6N4adJ0vzkp8-L7AR_W29UkVgM9N_u4rn9Gf3ZuEPfedQJP0WjYqOnihgxMCMur3No/s320/12716330_1106310262752770_3294014449240159521_o.jpg" height="400" id="image2" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhug95Q6z_mAqA0Cf5zbbjfEKBWM2dLst5D-5RN6nMK6vS_nUAsnaHFjhyVdNUYO2YgSvA9DcrF9A6N4adJ0vzkp8-L7AR_W29UkVgM9N_u4rn9Gf3ZuEPfedQJP0WjYqOnihgxMCMur3No/s400/12716330_1106310262752770_3294014449240159521_o.jpg" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); border-radius: 3px; border: 1px solid rgb(239, 239, 239); display: block; margin: 3rem auto; max-width: 647px;" width="299" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">The author's idea of an autism positive autistic male</span><br />
<span style="font-size: x-small; text-align: start;">model. With permission from Mu, and yes,</span><br />
<span style="font-size: x-small; text-align: start;">we have matching Neurodiversity 3.0 t-shirts.</span><br />
<span style="font-size: x-small; text-align: start;">He is wearing his, bought deliberately large</span><br />
<span style="font-size: x-small; text-align: start;">because the collar would disturb him otherwise.</span><br />
<span style="font-size: x-small; text-align: start;">The photo matters because it defies professional</span><br />
<span style="font-size: x-small; text-align: start;">assessments of his degree of disability.</span><br />
<span style="font-size: x-small; text-align: start;">He is facing me while I'm photographing him,</span><br />
<span style="font-size: x-small; text-align: start;">he's looking right at me, and he's sending a</span><br />
<span style="font-size: x-small; text-align: start;">kiss in my direction. Image of</span><br />
<span style="font-size: x-small; text-align: start;">a multiracial teen with curly hair</span><br />
<span style="font-size: x-small; text-align: start;">at a table in a black t-shirt with a</span><br />
<span style="font-size: x-small; text-align: start;">drawing of a human brain</span><br />
<span style="font-size: x-small; text-align: start;">colored to look like a physical map of the world</span><br />
<span style="font-size: x-small; text-align: start;">with the word Neurodiversity in all caps</span><br />
<span style="font-size: x-small; text-align: start;">and green lettering beneath it.</span><br />
<span style="font-size: x-small; text-align: start;">A refrigerator can be seen in the background as</span><br />
<span style="font-size: x-small;"><span style="font-size: x-small; text-align: start;">can parts of a sitting room behind him. © </span><a href="https://www.facebook.com/kerima.cevik.3">Kerima Cevik</a></span><span style="font-size: small; text-align: start;"> </span> </td></tr>
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The crushing element of structural ableism which breeds internalized ableism when nurtured by this type of parental gaslighting may have emotional consequences at a later time in Diezel's life and that truly concerns me. His mother clearly hates the autism label and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia or auditory processing disorders? Has he been tested for EDS? These are parts of the autism label that are rarely tested for or addressed in African American autistic populations. </div>
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As African Americans, we are forced to code switch, to suppress African American Vernacular English and cultural differences that make us who we are, unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as either entertainment or something less than acceptable. It is still a major issue when natural hair is worn to school or work. It is still a risk when AAVE is used in traditional work settings or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates<span style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);"> </span>structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.</div>
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Toni Braxton's celebrity and her wrongheaded understanding of autism have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.</div>
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She has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated rather than as a lifelong disability and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back when her intention appears to be to give our people some sort of hope and inspiration. </div>
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It is time to make these things clear and speak up for <span style="font-size: 0.9375rem;">the sake of so many autistic young adults and teens who live with self-loathing because of celebrity autism parents inadvertently gaslighting the attitude in them that those things that make them autistic must be code switched off, suppressed, and who they really are must be hidden away. </span></div>
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<b style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0);">The average life expectancy of an autistic person is <a href="https://www.vox.com/first-person/2018/2/19/17017976/autism-average-age-death-36-stress" style="-webkit-tap-highlight-color: rgba(0, 0, 0, 0); border-bottom: 1px solid rgb(204, 204, 204); text-decoration-line: none;" target="_blank">36</a>.</b> I would argue that what makes navigating this world as an autistic person so risky is not just being autistic, it is the way every layer of society bakes ableism into the structure of autistic lives such that from childhood to adolescence it becomes internalized and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children and the entire autism community. </div>
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I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior and the damage it is doing. What we can all do is recognize this and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities instead of peer-reviewed factual knowledge of what autism is and how we can facilitate a better life for our children. </div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-4198181921354117372.post-15336069981377710082018-06-15T00:57:00.003-07:002018-06-16T22:43:39.816-07:00Against The Autism Parent Feedback Loop of Woe <div class="separator" style="clear: both; text-align: center;">
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<span style="color: #660000; font-size: x-large;">"</span><span style="background-color: white; color: #181818; font-family: "merriweather" , "georgia" , serif; text-align: left;"><span style="font-size: large;">Please try to remember that what they believe, as well as what they do and cause you to endure does not testify to your inferiority but to their inhumanity </span></span><span style="color: #660000; font-size: x-large;">"</span></blockquote>
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<b>-James Baldwin</b> </div>
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<b>The Fire Next Time </b> </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNR5Uw70fmBdVhtk74onh2yXBOxgI6tpc6doz_JSBidxgiHvNEDwkLZChewjL5gXHzJkG5o1SfHTsZ8DCC28Zkn3zg3e0R0CITBTnTgHnA5EMMjWRcDPahsN1TF3hPUGNgbTSODfYRbbIV/s1600/muwow.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNR5Uw70fmBdVhtk74onh2yXBOxgI6tpc6doz_JSBidxgiHvNEDwkLZChewjL5gXHzJkG5o1SfHTsZ8DCC28Zkn3zg3e0R0CITBTnTgHnA5EMMjWRcDPahsN1TF3hPUGNgbTSODfYRbbIV/s320/muwow.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My biracial nonverbal autistic son, at about age 5,<br />
expressing shock through the gestural language he created.<br />
Image posted with the consent of subject <strong style="background-color: white; border: 0px none; color: #333333; font-family: Tahoma, Arial, Verdana, sans-serif; font-size: 12.8px; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: start;"><span style="font-size: xx-small;">©Kerima Cevik</span></strong></td></tr>
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<span style="font-size: x-large;">S</span><span style="font-size: large;">tephen Prutsman posted an opinion piece to the Autism Society San Francisco Bay Area blog, and while browsing newsfeeds on social media I read it. The blog post disturbed me so much I posted a brief response in the comment section. </span></div>
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<span style="font-size: large;">Mr. Prutsman headed his article with two images, a rainbow infinity symbol image he meant to represent the neurodiversity movement, and a disturbing photograph previously posted by his ASA chapter president alleging to show property damage to the upholstered seats of her car done by her autistic son.</span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Despite the reality that all content not spontaneously live streamed online is curated content, no one questioned the veracity of the statement that property damage to this car was inflicted by an autistic teen. That was something that bothered me. I wasn't there when the alleged incident took place. I am a stranger viewing this content and reading the hashtag of autism awareness beneath it. How do I know how the seats of this vehicle were damaged? I am presuming the honesty of a parent who shamelessly posts her own son's worst moments for the shock value. People can only ascertain character from words and deeds not from organization position and status. Status and power are not equal to ethics so, despite my presumption that the chapter president wouldn't post a claim that is untrue, it should still be pointed out that broadcasting anything to a public audience needs fact-checking. That means accusations about the behavior of another human being that cannot be verified should be viewed with skepticism when the accused individual is disabled such that they cannot defend themselves. </span><br />
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<span style="font-size: large;"> His article included a disturbing comparison that clumsily used African Americans and Sickle Cell Disorder. That was, in fact, a type of clueless racial microaggression. But the nature of Prutsman's blog post disturbed me so much I decided to address the inappropriate use of race and race-related illness as an extension of the use of Black suffering by affluent white people to gain an edge in debates having nothing to do with issues of race or African American people like myself elsewhere.</span></div>
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<span style="font-size: large;"> I am guessing his goal was to lay out his thesis while defending his chapter president's right to display negative content about her disabled son on the "raising awareness" excuse of what they both define as the real or true manifestation of autism. </span></div>
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<span style="font-size: large;">It got me thinking about this large problem I once thought our community would work at solving. The problem is an autism parent emotional sink that is Internet-hosted, blog and social media fed, and toxic. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9ruu3kSTcOKftoJ4XUjuHC6FjjzhKOzqu-J4I3-CGjZ4Rw1ArCGEKEq759jcLrmIbK5yMvhypcK-4zQMRQqWWH5TsMINtt_MFSf41G62WX7onOZ_JHMZEMks57QSzZ1wNyfOnDrKhkEE/s1600/MuPower_kindlephoto.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1088" data-original-width="920" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjT9ruu3kSTcOKftoJ4XUjuHC6FjjzhKOzqu-J4I3-CGjZ4Rw1ArCGEKEq759jcLrmIbK5yMvhypcK-4zQMRQqWWH5TsMINtt_MFSf41G62WX7onOZ_JHMZEMks57QSzZ1wNyfOnDrKhkEE/s400/MuPower_kindlephoto.jpg" width="337" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My son, and Afro-Latino presenting male, with brown curly hair<br />
wearing a black turtleneck sweater,<br />
holding his AAC device, an iPad equipped with<br />
TouchChat AAC outdoors<br />
green trees can be seen in the background.<br />
Image posted with the consent of the subject. <strong style="background-color: white; border: 0px none; color: #333333; font-family: Tahoma, Arial, Verdana, sans-serif; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: start;"><span style="font-size: xx-small;">©Kerima Cevik</span></strong></td></tr>
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<span style="font-size: large;">It isn't because nonverbal autistics like my son are "acute" as Mr. Prutsman infers in his essay. It is my hypothesis that such an emotional sink happens when parents like Mr. Prutsman and his ASA chapter president begin losing the emotional and physical wherewithal to support their disabled family member's needs without help. Under these circumstances, when negative events happen, these parents retaliate by venting their clinical depression, sleep deprivation, frustration, and distress on the autistic offspring by posting their worst moments on social media. </span></div>
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<span style="font-size: large;">When I named this blog <i><b>The Autism Wars </b></i>I meant the wars for accommodation, inclusion, and representation for my son and his neurological peers. The wars for the presumption of his competence. From what I understood of his essay, Mr. Prutsman believes the autism community can be divided into two warring camps and his camp, camp b, is at war with the neurodiversity camp, camp a. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">I am not at war with Mr. Prutsman, his oversharing chapter president or the SFASA. If I am at war with anything, it is the culture where ableist attitudes like theirs are incubated. </span></div>
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<span style="font-size: large;">Is this group of parents within SFASA, led by its executives like Mr. Prutsman and its chapter president, caught up in what I call the </span><span style="font-size: large;">autism parent feedback loop of woe</span><span style="font-size: large;">?<b> </b>If so,</span><span style="font-size: large;"> as this pain/frustration feedback loop escalates unencumbered, is there a genuine risk of catastrophic outcomes? </span></div>
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<span style="font-size: large;">I have had these concerns since encountering parental rhetoric similar to parts of Mr. Prutsman's essay in blogs by others whose written displays of frustration and despair escalated to a deadly conclusion. That is why seeing such a post from an executive of an autism advocacy chapter so disturbed me. He and his chapter president are part of the leadership of an advocacy organization supposedly existing to champion autistics like my son. What message is this sending to the disabled members of this chapter? I wonder if they realize how many autistic adults parent autistic chidlren? How many such parents will happen upon Prutsman's blog through social media browsing?</span></div>
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<span style="font-size: large;">Let me take a minute to define how I think this feedback loop works:</span></div>
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<span style="font-size: large;">1. <b>Digital Exhibitionism</b>: Autism parent group leaders who constantly overshare about their challenges with their kids, who make every disability-related challenge experienced by their offspring about them rather than the child, are using this as a coping mechanism for their own frustration and individual distress. They are typically overwhelmed (frustrated, <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4786636/">sleep deprived</a>, clinically depressed, etc) and as a result, may be making decisions with</span><span style="font-size: large;"> compromised executive function. </span></div>
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<span style="font-size: large;">2. <b>The positive Feedback loop of Pain, Grief, Frustration</b>: These de facto peer-moderated support groups for overwhelmed parents, if left unregulated, include lots of positive attention for expressing distress and pain. The more the lead parent posts, the louder that parent complains, the more attention they get.</span><br />
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<span style="font-size: large;">3. If left unchecked, <b>getting attention for being in pain becomes its own reward</b>. The more that state of mind is rewarded, the more motivation there is to constantly express pain through digital exhibitionism and the publishing of more dramatic negative content.</span><br />
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<span style="font-size: large;">4. This <b>feedback loop does damage to a person's motivation to seek actual long-term help</b> for the targeted disabled child or themselves because it's easier, more accessible, and more rewarding short term when people need immediate comfort after a distressing situation at the expense of one's autistic child. This is especially the case when the autistic target is nonverbal and multiply-disabled.</span><br />
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<span style="font-size: large;">5. <b>Any attempt to express concern for the disabled target </b>of the negative content to a group in this state of mind will only strengthen its resolve because it<b> encourages the group to make the problem about those they perceive as their attackers</b>. It discourages introspection and allows further wallowing in frustrated angry pain. It promotes in-group solidarity because now there's a common enemy who they believe is persecuting them.</span><br />
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<span style="font-size: large;">6.<span style="background-color: white; color: #222222; font-family: "arial"; white-space: pre-wrap;"> </span>Without urgent, long-term, <b>quality trauma-informed</b> care for the parents triggering this cycle by generating and posting the curated, negative content such groups need to validate their anger/pain/frustration, people who are caught in this feedback loop risk eventually escalating to violence towards the targeted disabled family members and themselves. The fact that people who have done this are excused for their behavior and the violence is made to seem inevitable (and the fault of the target) further compounds the issue. </span></div>
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<span style="font-size: large;"><b>The case of Isabelle Stapleton</b>, the autistic young woman who was the target of her mother Kelli's escalating digital exhibitionism and eventually became the victim of her mother's attempt to murder her, is an example of how constant inappropriate validation for posting such negative content online can escalate and become dangerous to the disabled target. </span></div>
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<span style="font-size: large;"> Kelli Stapleton's constant postings of videos and images violating Isabelle's HIPAA rights and her blog about parenting Isabelle deliberately named <i>The Status Woe</i> acquired a large, cult-like following of parents. The tone of frustration and defiance at anyone expressing concern about posting negative content is similar in tone and approach to parts of Mr. Prutsman's written content.</span></div>
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<span style="font-size: large;"> </span><span style="font-size: large;">I believe groups and individuals with large public platforms who promote this culture of validating negative content targeting autistic offspring create an attitudinal shift that enables escalating risks of potential harm to the autistic youth targeted by such digital assaults. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">The plight of artificial intelligence exposed to negative or offensive social media content gives us a painful clue of what impact negative social media curating and consumption can have on people. <a href="http://norman-ai.mit.edu/">Norman</a> the MIT AI fed with Reddit data who now only thinks of murder and death, and <a href="https://en.wikipedia.org/wiki/Tay_(bot)">Tay</a>, Microsoft's chatbot who Twitter taught to be racist and misogynist, show us that the culture of frustration, perpetual mourning, infantilization, hostile objectification of autistics with high support needs, and resentment that drives oversharing and defense of negative content in these autism parent groups may pervert the minds of exhausted, distressed parents. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Our community has an abnormally high rate of filicide-suicides. I believe this phenomenon needs to be studied in the context of the influence of online groups caught in these feedback loops. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Here is my other concern with his article. </span></div>
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<span style="font-size: large;">Mr. Prutsman's thesis in his essay was meant to explain his answering 'yes' to the question “Is it Time to Give Up on a Single Diagnostic Label for Autism?” citing the title of a questionable commentary by <span style="background-color: white; color: #222222; font-family: "arial"; white-space: pre-wrap;"> </span><a href="https://blogs.scientificamerican.com/observations/is-it-time-to-give-up-on-a-single-diagnostic-label-for-autism/">Dr. Simon Baron-Cohen</a> in Scientific American. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Prutsman's essay argues for a new label as a kind of weaponized tool for him to wield as an autism dad. His demand for a new label for "acute" autism is not because the group diagnostic designation fails to encompass the entire autistic population, but because he views the label autism as being "tainted" by any group that disagrees with or disputes their parental group's rigid, negative, definition of autism. Prutsman defines severity and indeed autism itself by how he and parents like his chapter president view any negative behaviors rather than by proper diagnostic standards.</span></div>
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<span style="font-size: large;"> He appears to blame the neurodiversity movement for what he calls 'tainting' of the autism label. Prutsman writes that this tainting happened by presenting autism as an identity, and overemphasis on positive attributes of being autistic by the neurodiversity movement. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">What is interesting about how he defines the neurodiversity philosophy is that it is not at all accurate. Unfortunately, the term neurodiversity has been conflated and the popularity of the book NeuroTribes confused rather than clarified the term. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">It is clear now that a great many autism parents don't understand the concept. Let me repeat one of the best quotes I have ever read about neurodiversity :</span><br />
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<span style="font-size: large;">"Neurodiversity isn't about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It's about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens."</span><br />
<span style="font-size: large;">- Shain M. Neumeier, Esq.</span></blockquote>
<span style="font-size: large;"> </span><span style="font-size: large;"><span id="docs-internal-guid-cd1eef18-fcf7-2292-65a8-839fe92898b2"></span></span></div>
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<span style="font-size: large;">Mr. Prutsman othered anyone who might object to the targeting of autistic youth by the digital display his chapter president employed. He lumped them together into a stereotyped other by listing any commentary from those he did not know and dismissing it. Under the category of non-relevant commentators, he cited the neurodiversity movement or "group a," non-participating chapter members, and online readers like me who were not local. This allowed him to define a collective enemy for his group to view as antagonists. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;"> Prutsman implies that the enemy has won the autism label battle. Now his group must have a new autism label for their kids, that restores complete power and control of the autism conversation and public policy dictatorship to them.</span></div>
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<span style="font-size: large;">The sad reality of things is that parents like Mr. Prutsman and SFASA's chapter president who are affluent, white, and embedded in the feedback loop of woe are still the loudest and most heard voices in our community. Yet that massive platform drowning out the voices of the autistics they are supposedly speaking for doesn't seem to be enough.</span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Their resentment of everyone else, particularly autistic adults having agency in the future of what happens in their own lives harms my son by perpetuating a deep seeded ableism that negatively influences the public view of nonverbal high support need autistic youth. </span><br />
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<span style="font-size: large;">Autism parent feedback loops of pain and frustration don't provide any solutions to the behavioral challenges parents like Mr. Prutsman want constantly highlighted by generating and promoting negative curated content.</span></div>
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<span style="font-size: large;"> The emotional opinion that professional diagnostic labels should be changed to disenfranchise one part of the community and allow control of autism public policy to rest completely in the hands of enclaves of parents too wrapped up in their own feedback loops of misery to see the need to protect their own disabled offspring by not oversharing negative content is a risky proposition on his part. </span></div>
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<span style="font-size: large;"> He is not really asking for a new autism diagnostic label. He's asking for a legal or medical excuse to excise a massive part of the autism community so they can run the autism world. Without the consent or voices of their own autistic loved ones or parents like me.</span></div>
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<span style="font-size: large;">And here is a sidenote. Yes, nonverbal humans can indicate consent <b>if they are allowed to</b>. Once competence is presumed and communication pathways actively sought for nonspeaking people, yes and no gestures, switches even eye blinks are possible.</span></div>
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<span style="font-size: large;"> I don't need a new DSM label for my autistic son. Nor do I need a parent who is oblivious to what our son needs demanding one in the name of all high support needs parents and their offspring. What I need is for parents like Mr. Prutsman to grasp is that every stakeholder in our community has a right to equal representation whether he agrees with it or not. He can't live in a world segregated by those he accepts and those he doesn't. I'm Black. I don't need to remind us that my racial peers are still suffering from that idea.</span><br />
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<span style="font-size: large;"> Abusing one's large platform to enable digital oversharing and abusive content generation is contrary to the principles of an autism advocacy chapter executive. But what can be done to reach such parents? I am afraid the nature of Internet interaction makes such an effort futile.</span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">The question for us is what can be done to help break the toxic online culture that builds these enclaves of parents trapped in the autism parent feedback loop of woe? How can advocacy groups reach parents who are in this state? What happens when the loop exists within an advocacy organization's power base? </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">Because something has to change here. This type of dysfunction is the root of community altercations and I suspect the root of eventual harm to autistic children and youth. We must seek solutions.</span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;"> This is unsustainable. </span><br />
<span style="font-size: large;"><br /></span> <span style="font-size: large;">----------------------------------------------------</span></div>
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