Drapetomania, Legalizing Harm, And Pushing Segregated Autism

The image on the left captures a Tweet promoting an opinion piece by Alison Singer. It reads:

 "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

spectrumnews.org Opinion: It's time to embrace 'profound autism' | Spectrum | Autism Research News

 

Ms. Singer's OpEd brought to mind the published opinions of Dr. Benjamin Rush, 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 Drapetomania and Dysaesthesia aethiopica for the singular purpose of manipulating public policy in the slaveholding South. 

 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) 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, scientific ableism? 

During this moment, when the American Psychiatric Association is just beginning to confront and acknowledge the harm done by its racist past, 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.

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 institutional care settings 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.

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.

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. 

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.

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.

The Acceptance Letter

 

The Acceptance Letter

By Kerima Cevik
Autistic Self Advocacy Network

Dear Mumu,

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.

I know you are always here. I once watched a Youtube video named “Autism Took Mikey.” I never understood that

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.

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.

“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.”

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. I’m right here in your corner, son. Always. 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.

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.

All my love,
Mom

AutisticWhileBlack: The Case of Aisha X

Stock image of a mother and
Infant son.

What 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?

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.

This is Aisha X's dilemma.

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.

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: https://wamu.org/story/19/08/19/fathers-are-favored-in-child-custody-battles-even-when-abuse-is-alleged/ and NPR reported here:https://www.npr.org/local/305/2020/07/29/896692057/lawmakers-and-experts-recommend-changes-to-maryland-s-child-custody-court. All of which led Maryland State Senator Susan Lee to draft Senate Bill 594 in 2020 here.

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:

Professor Joan Meier at George Washington University Law School, and other researchers, 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.

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.

Ironically, in 2016 Maryland Bill SB 765, CINA, Guardianship, Adoption, Custody, and Visitation - Disability of Parent, Guardian, Custodian, or Party, was signed into law.

On paper, the law is supposed to protect disabled parents from discrimination in child custody disputes. Disability Rights Maryland praised the bill's passage as follows:

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.

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. 

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 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. 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.

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.

Ernestine Bunn Dyson, Doreen M. McClendon, Yvette Cade, Freda Edwards, and Jackie M. Lewis 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 authorities, some of whom either dismissed the signs of abuse or claimed they didn't have sufficient cause to justify restraining orders.

Possible Faith-Based Causes of PG County's High Domestic Violence Rates

Aisha X's case was initially being tried in PG County. One cause of this ongoing issue of high rates of domestic violence put forward by Christian community activists in PG County was that biblical scriptures were weaponized to justify the demand that women must be submissive to men. This concern led to local clergy deciding to work within church congregations to clarify the scripture to reduce the amount of faith-based domestic violence in the County. 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, who experience domestic violence by an intimate partner at higher rates than their nondisabled peers.

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?

 A recent judgment by A Texas judge who ruled coverage of anti-HIV medicine violates religious freedom 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. 

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. 

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. 

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. 

Update:

Here is the link : 

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

Curiosity

 

Written on this day in 2017:

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. 

You know why I get into so much trouble in life? Curiosity. 

Example 1. 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.

 Example 2. 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. 

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?" 

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? 

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.

#SurvivingPolicing: People of the State of California v. Isaias Cervantes, Case No. BA499677

Image of Disability Voices United Poster Calling
For a Justice for Isaias Cervantes protest on January
12th.

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.

Let's start by discussing The People of the State of California v. Isaias Cervantes, Case No. BA499677.

On March 31, 2021, Isaias, autistic and Deaf, was in a state of meltdown at his home when his sister called 911 for mental health support.  Mr. Cervantes' therapist and the family 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:

In March of 2021, Cervantes was shot and paralyzed by an L.A. County Sheriff’s deputy who was responding to an emergency call from the family.

Deputies say Cervantes reached for one of their guns, but body-cam video released by the department doesn’t clearly show that.

More than six months later, the district attorney’s office charged Cervantes with assault with a deadly weapon on a peace officer.

More than a dozen advocacy groups — including the Autism Society of L.A. — were shocked by the move and sent a letter to DA George Gascón’s office.

 Isaias is paralyzed from the bullet that damaged his spine and one of his lungs. The unusual thing about Isaias' encounter is that he survived it. So many others (Steven Eugene Washington, Mohammad Usman Chaudhry, Stephon Watts, Ronald Madison) do not. 

I have often stated that police are not mental health professionals and that mental health crises should not be part of law enforcement activities. 

Despite the Los Angeles Sheriff’s Department having  Mental Evaluation Teams (MET) meant to have health clinicians ride along with sheriff’s deputies since 1993, no MET responded to the Cervantes call.

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.

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.

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.  

The risk of being killed by law is 16 times higher 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.

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?

Maryland lawmakers are proposing a trust to fund our call centers, and California has a bill working its way through its legislature.

This is California's bill: https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=202120220AB988

This is Maryland's effort: https://www.fundmd988.org/about-md-988

and Maryland's bill: https://mgaleg.maryland.gov/2022RS/bills/hb/hb0293T.pdf

This is a life and death question for marginalized autistic and other neurodivergent folx. Like 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. 

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.

 

In memory of Ryan LeRoux

------------

 This #AutismAcceptanceMonth and #SAAM2022, all my essays are being written to encourage your support for @behearddc, a cross-disability abolitionist organization supporting and advocating for Deaf, autistic, and other disabled people in prison or who returned home from prison.

Please share and consider donating by clicking the link below:

https://behearddc.org/donate/

AutisticWhileBlack: At The Intersection of Deaf Culture and Nonspeaking Autism

 

Image of Mustafa, age five, signing to his sister in a gray 
long-sleeved shirt and black slacks. He is a brown Latine 
presenting boy with short black curly hair. Image credit
Kerima Cevik

When 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.

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.

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.

She understood him completely. It was a monumental event for us.

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. 

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.

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.

His teacher insisted that our son did not have the fine motor skills to learn sign language.

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?

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. 

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. 

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.  

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.

AutisticWhileBlack #SaveDarius II The MTA, In Black And White

 

Darius McCollum image of an older African American Male
with a short full beard. A blurred rail car behind him.
He is wearing a black ski cap, black coat with a dark blue
zipped up inner-lining. Image credit Adam Irving

“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.”― Ta-Nehisi Coates, Between the World and Me

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.

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.

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.

But I know that Ta-Nehisi Coates is right. I always wake up from these reveries feeling gut-punched in the truth that everything lands with great violence upon the black body.

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 Neili, Arnaldo, and Darius' path?

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.

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.

What do I mean when I claim that Darius is caught in the sinkhole of racist ableism?

Sometimes it is easier to see the reality of this when black lives are compared with white ones..

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, The Case for the Subway, 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. 

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.  

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. 

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? 

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. 

Either our entire community acts to aide Darius or accepts their complicity in the harm done to him.

Want to help?

Start here: https://www.change.org/p/new-york-state-attorney-general-darius-mccollum-is-not-dangerously-mentally-ill

#ADA 2016 While Black Revisited: In Memory of Elsie Lacks

Image of Elsie Lacks, a small Black girl in a
plaid dress, white shirt. socks, and shoes.
Her hair is straightened.
Credit: Lacks Family

I 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.

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.

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.

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.

The grave Debbie Lacks had made 
in Memory of Elsie Lacks 

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.

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.

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.

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.

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.

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?

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.

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?

Trust them?

Really?

-----------------------------

References:

Rebecca Skloot’s ticket to fame: The suffering, death, and Immortal Life of Henrietta Lacks: http://rebeccaskloot.com/the-immortal-life/

The institutionalization, suffering, and death of Elsie Lacks as part of the history of Crownsville State Hospital: http://www.capitalgazette.com/cg-tragic-chapter-of-crownsville-state-hospitals-legacy-20140730-story.html

The formal request led by the ACLU from multiple organizations to then Maryland Governor Martin O'Malley "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." http://www.aclu-md.org/uploaded_files/0000/0453/crownsville_8_2_13_finalwsigs.pdf

http://www.baltimoresun.com/news/maryland/anne-arundel/annapolis/bs-md-ar-crownsville-black-caucus-20130918-story.html

AutisticWhileBlack: Against The Erasure of Ron'Niveya O'Neal

 

Ron'Niveya O'Neal, a beautiful
Nonspeaking Autistic Girl wearing
a filter crown of flowers that 
match her pattern pink and white 
sweater.

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. 

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. 

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.

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.

 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 John Elder Robison happily provided autism as an excuse for Dylann Roof, someone who premeditated and murdered innocent African American parishioners at Mother Emmanuel AME Church in the hopes of beginning a race war. 

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 Lydia X. Z. Brown and Sam Crane was silent. 

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. 

Obituary (via Integrity Funeral Services) :

Miss Ron’niveya O’Neil

Ron'Niveya O'Neal, a
beautiful brown-skinned girl 
wearing her natural hair into 
two high puffs, and huge tulle
 pale pink bow and a pink T-shirt
with a big white heart at its
center with the words 'boy, bye'
written in the middle of the heart. 

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.

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. 

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.

AutisticWhileBlack #BlackHistory2021: Vaccination While Black

The author, owning
The angry Black woman 
look. Image of a gray haired 
Black woman with glasses. 

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.

Steve Silberman, the author of  NeuroTribes, posted this on social media:

Steve Silberman: Vaccine envy is a thing.

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.

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 zip codes. Add racialized autism to these obstacles, and the idea of achieving vaccination becomes a nearly impossible mountain of barriers to climb.

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 Rachel Maddow has spoken to our own people trying to breach barriers to vaccinate us. 

I tweeted about Drene Keyes 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.

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. 

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.

When will those who are supposed to be our allies cease making thoughtless, clueless, cruel statements like "vaccine envy is a thing?"

If this is the mainstream idea of allies, miss me with that.

Rant, done.

AutisticWhileBlack: I've Got This

Note, this happened last year. Our school system is closed and virtual this year due to the pandemic. kc                     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.”
                                                  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.                                                                

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.)

“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.”

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.

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.

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.

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.

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. “
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. “

Another brutal portfolio review is over. I leave, fighting back tears, thinking, “don’t worry son, we’ve got this. “