Wednesday, April 20, 2016

Autism Month Essays: The Price of Erasure

Harriet Tubman,  By artist H. Seymour Squyer, 1848-18 Dec 1905
National Portrait Gallery, Public Doman,
https://commons.wikimedia.org/w/index.php?curid=9717226
According to POLITICO, "Treasury Secretary Jack Lew on Wednesday will announce plans to both keep Alexander Hamilton on the front of the $10 bill and to knock Andrew Jackson off the front of the $20 in favor of Harriet Tubman." 

If this is true, it is a huge lost opportunity for a tremendous victory in the disability rights community's fight for representation and the presumption of competence.

If this is true, despite the erasure of neurodivergent people of color from histories of autism and disability studies textbooks , it is a victory for intersected disability rights activists because Ms. Tubman was neurodivergent, the result of repeated beatings and catastrophic head trauma while enslaved. Consider that her best civil rights work was done after becoming neurodivergent and what I mean becomes apparent. Harriet Tubman is the textbook historical example justifying the argument for the presumption of competence.
This dual situation of loss and gain is a typical example of why I began to write constantly about racial injustice within our community, particularly on the damage done by erasing neurodivergent people of color from histories of autism. Does everyone feel the price of erasure now? So much gaslighting has been done on how whitewashing must be accepted by those of us who are not white in order to present these histories to fragile white audiences that this incredible opportunity to move from reading about a neurodivergent historical figure in a recent history to lobbying in support of representation for all neurodivergent people was squandered by the very act of allowing our own activists to accept the erasure of Ms. Tubman's disabled Black identity, perpetuating structural racism among our own movements and organizations. It could have had the lobbying power that Lin-Manuel Miranda's voice had on the heels of a triumphant broadway production of Hamilton, personally reaching out to Lew to keep Hamilton on the $10 bill. No monumental opportunity some best-selling history of neurodiversity followed by a powerful voice for Harriet Tubman's face on U.S. currency will ever happen.That ship has sailed.
What is the benefit of editing out the voices of people so powerful to disability rights representation that their places in history have overcome the standard erasure endemic to their race and origin? How does this erasure from histories benefit the fight for my son's right to equal representation as a brown autistic teen?
Ah, the irony of the victory and failure of this series of events! Anyone grasping this after I've pointed it out should know that Ms. Tubman's neurodivergence, which was described very much with the same symptomology as today's TBI-induced autism, should have merited a mention in histories of autism. Those activists who aggressively insisted I was overreacting to the new slew of histories of autism and critical disabilities studies books that perpetuate the same erasure can now see where this kind of gaslighting leads. Neurodivergent Black people existed and mattered at periods in history when my race was made into chattel in this country. They played major roles in our nation's history and in the histories of human rights movements for centuries.
But all of these enablers of erasure can keep worshipping at the temple of white-washed histories only acceptable when written by white people and call themselves disability rights activists.
Here are the choices. Stew in the hypocrisy of fighting for disability rights while denying the rights of disabled people who aren't white. Or, when looking in the mirror becomes difficult, maybe try giving nonwhite disabled voices equal platforms along with their rightful places in history. 
Hopefully, this can be more than a token victory or appropriation of Ms. Tubman's life, objectifying her while silencing her neurodivergent black peers.

Resources:
About Harriet Tubman, Civil Rights Activist
About Tubman replacing Jackson on $10 bill
About the erasure of Black Autistics from Histories of Autism

Monday, April 11, 2016

Autism Month Essays: What is Wrong With This Picture?

Google Glass
By Dan Leveille (danlev on Wikimedia) - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=33220901
A very large failing in the autism conversation is inherent in the way things about autism are presented. Regardless of the merits of the content, the way it is presented to the public feeds a cycle of structural ableism and structural racism that do great harm even when the content itself appears positive.

A KQED Science news article is a typical example of how structural ableism and structural racism are perpetuated in a brief news post. Even a cursory look at the article makes this apparent.

The title of the article is "Google Glass Flopped. But Kids With Autism Are Using It to Learn Emotions." The reader is immediately hit with a trope about autism that is ableist and incorrect. The title is misleading and sets the tone for the way the content is presented.
The presentation implies that:

a. Autism is an illness rather than a disability which is false; b. The use of "kids with autism" implies person-first language is accepted by the entire autism community which is false; c. Autism is prevalent exclusively in children, reinforcing the trope that autism did not exist until recently which is false; d. Children with autism don't know what emotions are and must, therefore, learn them which is false.

 Rather than including a discussion of prosopagnosia, a form of visual agnosia characterized by an inability to recognize faces, and the fact that a vast majority of autistic people have some form of this condition, and rather than approaching the research of Google glass as potential assistive technology to help individuals with prosopagnosia recognize greater detail in faces and thereby recognize changes in expression, the way this study is presented in this article pathologizes autism, and displays the study as a way to teach autistic people human emotion, something they already know. Foundational misunderstandings that parents and family members harbor towards their autistic loved ones stem from the promotion of these stereotypes about autism. The exclusion of what impact conditions like prosopagnosia, synesthesia, and auditory processing disorder, can have on how an autistic individual of any age interacts with others and how those conditions are improved by Google glass is also critically omitted from the article.

No attempt at defining for the reading public why autistic people don't make eye contact is done. Increased eye contact is simply lauded as an improvement in the symptoms of  autism as a medical ailment. Having lived in societies where making direct eye contact can be seen as rude, invasive, and a sign of promiscuity, I find the issue of eye contact not being addressed in general, and how much eye contact is appropriate by culture not being addressed in particular,  rather sad.

A deadly disservice is done when research on how to implement assistive technology is focused on autistic children alone. This implies that autistic adults somehow can't benefit from new supports and assistive technologies. When research focus is only on autistic children with verbal speech it is a devastating disservice to nonspeaking autistic populations who might benefit from the same assistive tech. When a piece of research is presented as if the sole focus is children who are well off and white it perpetuates the myth that autistic children are exclusively white, upper middle class, and geeky people who have social skills challenges. This increases the likelihood of continuing a cycle of misdiagnosis of autistic children of color that denies them supports in education, health, and assistive technology. This continues a cycle that results in the appearance of autistic children of color presented as "more severe" than their white peers.  It is a perpetuation of racism and ethnic bias in autism research and the autism conversation.


The presentation of this research in the KQED Science article as a tool for potential home based therapy for learning emotion rather assistive technology to help autistic people differentiate emotions they already have and know in the people around them is ableist promotes the trope of the autistic child lacking a piece of what makes us human. The damage in presenting autistic people in general and autistic children in particular as lacking or incapable of emotion can lead to life-threatening situations and irreparable harm in the name of  therapy, education, and behavioral support.  It can change attitudes in care providers that increase the potential for harm to vulnerable autistic children and adults needing intensive supports. How information is presented matters just as much as the content itself. Especially when how something is presented can mean a complete shift in how an autistic child is perceived to be by our society as a whole.

The most critical part of this study, an elephant in the room of the autism conversation, is that this study was conducted in Silicon valley. The discussion of wide dissemination of Google Glass for autistic children as an assistive technology tool is an insult to middle to low-income families and autistic adults who might benefit from them. The glasses are a whopping $1,500, and this excludes the monetization of any app the glasses would be paired with for therapy. Even if the cost of production dropped to between $299 and $500, expecting families to afford this when they cannot even afford basic communication devices, additional therapies or in-home supports critical for their children's ability to thrive as adults insults. The conversation in autism policy continues to be driven by the rich and those with power and privilege. The irony that this study could have been conducted collaboratively in a classroom population of title 1 school autistic children in Oakland is not lost on me. Why did the research team choose to ask for volunteers for phase 2 of this study when study candidates could be gleaned from the greater autism community in such a way that full inclusion could be achieved?

If the transformative change in assistive technology available to the autistic population is really meant for all, then research policy must dictate that funding allotted to such research include the entire autistic population across economic communities, across ages, and across degrees of disability.

Until that happens, it should be understood that what is being read as research content much of the time is a method of repackaging an ableist presentation of autism research; an extension of structural ableism and discrimination driven by negative tropes embedded in public policies on autism and how the public is asked to view it.

No inclusion in society will be possible until these disparities in the way research is conducted and information about the research distributed are addressed.



Saturday, April 2, 2016

Autism Month Essays: Who Cares What Causes Autism?

Mustafa N. Cevik asleep at a public library @Kerima Cevik
I have this rather unusual skill set, a result of a fairly odd life. One skill was learned when I was a freshman in college. One of my professors was a research psychologist. After I got top marks in his Psychology 100 course, he appealed to my university to allow me to take a 400 level psych course with a lab. His goal was to get me motivated to change my major to research psychology. During that second semester of college, I learned how to read and analyze research papers. This professor was a speed reader, a talent he tried to encourage in us. He could blaze his way through the latest issue of Scientific American and tell you what was woo and what was not in less than a half hour. Bear in mind this was before the time of the Internet and instant global access to research papers across all disciplines.

I never pursued research psychology. I thought to be able to review research papers a rather superfluous skill until my son was diagnosed a multiply disabled nonspeaking autistic. My husband was working at Johns Hopkins then, and when Kennedy Krieger failed to provide enough answers I began to dig into the research with a passionate determination to find answers. My old psych. professor would have been proud. Though I'm no speed reader, I separated the woo from the valid stuff pretty well. And my was there a lot of woo. 

This reading of research papers led me to seek evidence-based sites on autism. Along with that need, I wanted to find sites that presented a humane approach to autism.  I began to read blogs like Left Brain Right BrainThe Joy of Autism, the original Autism Diva, who was an academic (someone else appropriated the name and is using it now sadly), Kristina Chew's posts on Care 2 and what is now We Go With Him (her son Charles was so much like my son), and all that lead me to a now-archived site called neurodiversity.com

Mustafa at age 5, in his wheels, waiting for the school bus @Kerima Cevik
I had tried to plow my way through sites like Age of Autism. They were so depressive that I could not read more than a few paragraphs before deciding all that was just not good for our family. The general theme at the time seemed to be a centralized location for parents to vent about how awful life with their autistic children was, that vaccines were the cause of it all, graphic descriptions of  their children's private health-related crises and episodes, and how brave they all  were for bearing up under the strain. 

I think my abhorrence  for AoA was exacerbated because I'd had a horrible encounter with an autism service dog provider who was all for our family coming up to Northern Virginia to match our son with a good dog and train them to work together until she learned his name was Mustafa. From that moment on it was one insult after another in a torrent of Islamophobic ignorance until fed up, I told her a five-year-old United States citizen who was both nonspeaking and multiply disabled was not a terrorist and hung up on her.  In frustration, I wondered if I could train a rescue dog on my own. Had anyone trained an autism service dog on their own? Finally, I came across an article by someone named Jim Sinclair, an autistic educator who explained how to train a service dog on one's own. That is how I found Sinclair's essays  "Why I Dislike Person First Language," and  "Don't Mourn For Us." I learned that the latter essay had been read at a conference in Canada.
Mustafa at age 9, representing The Baltimore Ravens ©K.Cevik

While I tried to decide whether we could even afford to maintain a service dog, and how I would have the time to train a dog and meet our son's intense support needs, we, like many families of color, learned that when your loved one is nonspeaking and disabled, those with power over them in schools can harm with impunity and without consequences unless said abuse is caught on camera. 

Sometime in 2008, I heard this young autistic college student say "who cares what causes autism?"  during an interview and I felt slapped. What the hell did he mean, who cares? I think it was during an interview on Good Morning America. I was so annoyed then that to this day I can't recall for certain. I read one of several other interviews with him to my husband, a habit of news reading we both do to help one another keep up with things while attending our son. 

Seriously, what did he mean who cares? Cheeky young upstart! But my husband said at least he wasn't acting like autism was the bane of existence and our son would be some useless sack of potatoes we were going to carry on our backs the rest of our lives. At least someone was saying something that wasn't negative. Of course, we were certain he had no clue about our day to day lives as parents of multiply disabled autistic children. Let him fight the IEP teams and the bigots, the Islamophobia and the school bullies and take the kick to my stomach my little son inadvertently landed when the mall overwhelmed him and I was fighting to get him out of there and into a calmer place as quickly as possible. 

So whenever we ran across this guy in the media going on about autistic voices, I was skeptical but did try actually listening to what he said. "Nothing about us without us?" Well, I agreed with that part. But he could speak, read write, eloquently.  Our son could not.

Who cares what causes autism?

Later we heard the cheeky upstart was nominated to be the first openly autistic member of the National Council on Disabilities.  Apparently this young man was attending college in Maryland all this time. I'd never met him. What we thought was "good for him." But we didn't see how that would help our son. They were very unlike, weren't they? We thought meh. Different diagnoses. This Mr. Ne'eman had a dx of Asperger's Syndrome.  He wouldn't care about our son enough to drive the policy changes he really needed. Nope, we were still alone against the world, our son and us. 

Who cares what causes autism?

See the truth was research on autism all this time was aimed not at understanding why our son was unable to use verbal speech, or why he had a sleep cycle disorder, or a very weak immune system, or chronic intractable skin rashes and IBS that no one seemed to be able to determine the cause of. The research didn't find more accurate ways to measure intelligence in nonverbal individuals. There was no effort to develop an auditory processing assessment scale for nonverbal autistic children and adults. There was no way of testing our son for facial agnosia but therapists were demanding he look them in the eye.

 The research was all aimed at finding a genetic marker to autism that could allow a test to be administered that would effectively obliterate future generations of autistic children before they were born by letting parents know they were carrying an autistic child and giving them the option to terminate the pregnancy. That along with research toward drugs that reduced overt behaviors that might mark an individual as autistic was where the money was going. No research was being done that would improve our son's quality of life. A great deal of effort was being made to generate drugs that might provide degrees of chemical restraint and compliance for autistic children with behavioral challenges. Obscene quantities of research funding were being used to determine whether there was a link between vaccines and autism.

Who cares what causes autism?

Through a series of events, I ended up meeting the cheeky young upstart. The day we met in person there was no doubt he was autistic. As he walked away from me with a gait very similar to my son's, I realized this clearly. I next saw him at an event attended by other autistic adults. When autistic adults are together in a great group, they relax. When they relax, their concern for one another, their mutual understanding of one another's challenges and support needs, that empathy that is uniquely autistic, is apparent. No one needs to present themselves as someone they are not in those moments, and I became aware that I was given a great gift that most autism parents should be given. Maybe some of you believe that you've seen a gathering of many autistic people. Not like this.

Who cares what causes autism?

Most gatherings of autistic young adults and adults are run and controlled by parents, service providers, and organizations who wish to provide spaces for autistic youth to practice normalcy and social skills. So even events billed as recreational are actually treated as passive therapy and "passing" opportunities. Parents judge other people's offspring during these events by how distinguishable they are from their peers. The more blatantly divergent a child is, the more "help" they are still thought to be in need of and the pity and condescension are felt by those young people. Trust me. Some parents even thoughtlessly shame other parents by demanding function labels to see who is more 'severe,' whose children may not have won the chess tournament, or whose offspring are unable to stop stimming.  That is not the kind of autistic gathering I mean.

This event was so very not that.
Flyer for the event at Georgetown U. reads"Autistic
Empowerment: The Civil Rights Model ©Lydia Brown

Autistics shared coping strategies, new technologies, and problem solved for one another before and after the event. I was part of a panel of speakers and one of the speakers, Hope Block, was a nonspeaking autistic, like my son, and typed to communicate. I had the honor of having Ms. Block seated to my left and Ari Ne'eman, the cheeky upstart, to my right. When Lydia Brown asked if I would like to participate in an event they were organizing I had no clear idea that was going to happen. When it was all over, I turned to my left and thanked Hope for being there representing my son. She locked eyes with me and hugged me. I was overwhelmed. There was so much caring during that panel. This is a single example of one of the many reasons I get so frustrated with people declaring autistics lack empathy. Empathy requires this care and concern something that was front and center throughout that evening. 

Who cares what causes autism?

Eventually, there came a day that Ari Ne'eman met my son. It wasn't a good day for my son. At all. But Ari did something that day very few people had in my son's entire life. He introduced himself as he would to anyone my son's age. He shook our son's hand. 
Mustafa Cevik, large and in charge, in his wheelchair at
his big sister's graduation, age 12. @C.Nuri Cevik

Most people who meet our son are intimidated by the combination of his nonwhite identity, his visible neurodivergence, and his size. Our son is a body language reader. He senses their fear and in response believes there is something to fear and therefore becomes shy, then nervous, then agitated. Ignorant people, upon meeting him, have had the nerve to ask how I can be homeschooling and managing our son without help. They never realize the obvious; he isn't hard to manage at home. And this implies that our son is actually not as others perceive him when they see him for an instant in time, or when his incredible patience has worn thin. He is more than what he appears. I don't believe a single author of  recent histories on autism could manage to engage Mustafa long enough for a handshake much less communication. He doesn't like being touched unless he initiates the handshake. He is at times painfully shy and always unsure when first meeting someone. He has learned the hard way that people can't be trusted. Yet he shook Ari's hand. Only two other people managed a response from our son that day and one of those two was a petite autistic woman.

Who cares what causes autism?

Sometime after all these events, I realized that the types of research papers I was reading changed. The trips I was taking to Annapolis had a different purpose. I am not certain of the moment when the cause of our son's autism ceased to matter to me. I don't know when top priority became making sure that our son had the same rights in our society that everyone else did. I wanted my son to get the education he deserved. I can't recall when I said to myself that I didn't want any more teachers educating him who had so little regard for him that they'd say "oh who cares if he missed a trip to the pumpkin patch, they don't remember anything anyway." as his preschool teacher did. When was the instant I said my son deserved better than that? I think it came when I knew my son remembered every single place he'd ever been and ever single thing he'd ever done. I knew this from his reactions when we were on our way to those places. He knew where to go, even when I, who have a terrible sense of direction, did not. 

At some critical moment, I left the blame game behind. I just couldn't accept the myths being put before me about how I should view autism and therefore how I should think about my son.
I couldn't mourn for his loss when he was right there with us. No one took him from us, no one kidnapped him. He's a really cool dude that so many people are uncomfortable with because he can't hide his neurology. No one takes the time to try and get to know or understand him. That was the reality I lifted out of the woo of all the autism rhetoric of the past to reach this moment. Our son was here, lived, was and is loved, deserved to be respected.

Who cares what causes autism?

Can you understand what Ari Ne'eman meant in that interview? I don't care what caused our son to be born divergent. I care about helping him by ensuring he has the best quality of life he can achieve. I want to help him be as autonomous as possible. I don't believe the myth that my son's life is forfeit and several levels of hell await him should I die any more than I would for my grown daughter who does not carry his disability labels. We went from hopelessness and people screaming "mourn him" and "cure him" at us to understanding that once all that wasted energy was freed, we could focus on truly helping our son. 

Who cares what causes autism?   

I don't. It's an incredibly joyful and liberating place to be. Join me.

Resources:
Searching for autism blogs: 


Jim Sinclair's Don't Mourn for Us

Concurrent topics in the autism conversation:
Identity First Language:
Jim Sinclair
Lydia Brown at Autistic Hoya's posts are on Identity first are also excellent: 
Prosopagnosia/Facial Agnosia
Unstrange Mind's Sparrow Rose Jones'  excellent post on Non24

Back in the day, on Ari Ne'eman:

Saturday, March 12, 2016

On The Murder of Cynthia Busch

Image of Dr. Martin Luther King with the following quoted words: "We must be concerned not merely about who murdered them, but about the system, the way of life, the philosophy which produced the murderers. " - MLK Jr., Eulogy for the Martyred Children (1963) 
On March 10, 2016, 24 year old Cynthia Busch was shot to death by her mother, Barbara Busch, on the couch in their basement. Ms. Busch then turned the gun on herself.

The Fairfield Twp Department of Developmental Disabilities did not respond when asked if they had visited the family recently.

Because I am one of literally thousands of parents globally who care for children with intense support needs with no respite except his father, and I'm fortunate enough to network globally with other parent care providers in countries with less supports and services than we have here, who are overwhelmed, exhausted, and go through cycles of depression, I can't tell you how angry I am when with one glance at the disabled victim any public entity reporting a crime concludes that this act occurred because the murderer was tired of caring for the victim.  Leading with this excuse for murder is an insult to all of us out here loving our children and doing our best to care for them regardless of adversity. It is an insult to all those care providers who lovingly care for their clients though full lives. Most importantly it is an insult to people like my son, a kind and courageous human being in his own right, and all those neurodivergent people who deserve better than to be thought of as burdens on carer providers.  It sends the wrong kind of message. It functions as a passive form of enabling people to absolve those who commit this most heinous crime as if it is a legitimate excusable act. Then, like 6 year old London McCabe's mother Jillian, people think it is okay to premeditate and murder their neurodivergent children.

No one should project personal ableist feelings about what it is like to care for disabled offspring when learning about a victim's disabilities. If parents love their children they insure those children have an avenue of care after they are gone or when they realize they are no longer able to care for them alone. Barbara Busch had a boyfriend, friends, and neighbors who knew her and Cynthia for over 15 years. And yet they did not help her transition Cynthia to a safe place to be cared for and help her to seek professional support for clinical depression? Parents who love their disabled offspring don't murder them.  Bullet wounds are a painful way to die. You don't shoot someone you love! There was no love or mercy involved in this crime. Responsible community reporting demands that it be made clear that murdering a severely disabled person is neither an act of love or an act of mercy.

This perverse slant on reporting her murder erased Cynthia Busch's 24 years of life  by making her scenery in her own murder. Worse, her existence as a disabled person with intense needs was presented as the implied cause of her own death.  What actually happened to Cynthia Busch was a variant of domestic violence. Let us all consider looking at things through this perspective for a moment. Over a year ago my family moved out of a county here known for ridiculously high rates of domestic violence related murders. A man in that county recently confessed to  shooting the mother of his child, a beloved elementary school teacher, and their two year old child to death.  No one anywhere looked and the lifeless body of the toddler and reported "well clearly the child support...just looking at the challenge of dealing with a toddler... he was clearly overwhelmed." We would all be horrified if anyone in journalism, law enforcement, social services, any neighbors or friends of the victims said anything of the sort to apologize for the obscene crime committed.

Why is it okay to report murders of disabled victims with headlines like "PD: Fairfield woman killed adult daughter, self because she was tired of caring for daughter (Barbara Busch must have been overwhelmed)?"
©WCPO Cincinnati news headline screenshot
What if Cynthia wanted to live and was unable to express this? What if she loved her life as she was living it and was happy in her life? Does it take that possibility to make readers feel that the murder was more unjust and horrific? There are countless disabled adults who write, blog, speak, and have books about spending years of their lives without being able to communicate while understanding everything that occurred around them. Martin Pistorius is a prime example. He heard his mother say to him one day "I hope you die." She regrets that she said it now, and regrets more that he had become so objectified in her eyes that she beleived he could not hear or understand what she was saying to him. Had a caring, observant nurse not insisted Martin's parents get him re-accessed and had his mother not put assistive technology to communicate within his reach, he would still be trapped in his own body without a voice in his own life. Instead he is working, married, happy. We will never know what Cynthia could have accomplished. Because even in death, her personhood is dismissed. The injustice of this should enrage us all.

The police have concluded the murderer was overwhelmed and the neighbors think well she must have thought it through and decided this was for the best? Really?

1. Please stop enabling people by passively saying when people kill their loved ones it is understandable if they are severely disabled because the care for disabled victims overwhelmed the murderer. 

2. Treat 24 year old domestic violence murder victims like adult victims of murder by an abusive perpetrator. Investigate this as if this victim were the most beautiful woman in the world with everything to live for, and her life was snatched away from her, because that is the reality here.

3. Report on how the murder victim ended up in harms way. If the carer's boyfriend, neighbors, and the DDA knew her state of mind and level of fatigue, why was nothing done to help Cynthia receive care from an alternate provider until her mother was in a better headspace? 

4. How did the police reach the conclusion that the reason for Barbara's murder of Cynthia was because she was tired of caring for her? 

5.  Seek true causation by asking the right question: Why is this happening with intellectually disabled adults and children so much?

The answer to these questions might prevent another murder.

Each life has meaning and Cynthia's life should have been hers to live to the best of her ability. Life is not a privilege based upon how able one is or how one can live it independent of others' care and support. We depend on strangers everyday. We put our lives in their hands. Remember the suicidal young pilot who flew a plane into a mountain with passengers on it? We all recoiled from the wrongness of that. We didn't say, "he was tired of flying" or "he was overwhelmed." Everyone began demanding airlines globally do something to insure that all pilots be verified to be fit to fly airplanes without deliberately crashing them to kill the passengers onboard them.

Cynthia put her faith in the mother who brought her into this world and cared for her all her life. Barbara Busch did not call 911 and say "I am a danger to myself and my disabled daughter. I am overwhelmed." She chose to commit a violent act, and in doing so violated that trust in the same way Andreas Lubitz chose to harm others and himself. The passengers on  Germanwings Flight 9525 had the same value as Cynthia Busch did. All had an equal right to live.

When we understand that, we can end this cycle of murder-suicides.

On last thing. Call things what they are. However wonderful Barbara Busch's care providing and mothering skills were prior to this event, shooting Cynthia Busch was cold-blooded murder.

References:
The Murder of Cynthia Busch
http://www.wcpo.com/news/local-news/butler-county/fairfield-township/fairfield-township-police-chief-woman-killed-daughter-herself

The Murder of London McCabe
http://www.oregonlive.com/pacific-northwest-news/index.ssf/2016/02/sorry_was_all_mom_said_when_sh.html

Ghost Boy: The Story Of Martin Pistorius 
http://www.npr.org/2015/01/09/375928581/locked-man

The Deliberate Crash of Germanwings Flight 9525 
 https://en.wikipedia.org/wiki/Germanwings_Flight_9525

The Murders of Elementary school teacher Neshante Alesha Davis, 26, and her two-year-old daughter, Chloe Nichole Davis-Green
http://patch.com/maryland/bowie/slain-toddlers-father-admits-killing-girl-mother-report-0

Resources to help save lives permanently on my blog: 
http://theautismwars.blogspot.com/p/mourn-dead.html

Monday, February 22, 2016

Afterlife

The apocalypse came early. Our son was only 5 when the first bomb exploded in his life. It wasn’t his diagnosis day, when we stood in shock while he played with toys in a pediatric neurologist’s office at one of the best medical centers in the world.  It wasn’t the labels they nailed to his person in an attempt to crucify him with the neurodivergence that made him forever distinguishable from his peers. The first day of the end of the world as he and all of us who love him knew it was when he came home from his early learning placement with a wound on his face and no note of explanation as to how it got there. That was the day we began the war of attrition for his safety and right to an education. But in the background, with a sound so soft that we could not quite hear it, a clock ticked away the minutes until what we called our life exploded, and life after the apocalypse began.

 TicTic…Tic

Incident after incident, the unexplained injuries, the insults, the racial slurs, the unwillingness to try to educate him because by their own account he was too disabled for it to matter.
All my worst fears welled up and spilled into my sleep, flooding it with the nightmares of threats and gunfire, and a cross burning on my uncle’s lawn. The legacy of the one drop rule reared its hateful head, and structural racism came to claim my poor son, attacking him in his place of learning where he should have been safe because the ghost of his Black ancestors lived in his mother’s skin and in his face and eyes. Harm came like the four horseman and I fought back as only a mother who knows the sound of the whip, the pounding hooves of disaster and stench of hate against her child can…

 TicTic…Tic

We pulled him out of school. We consulted lawyers and learned they were more concerned with profiting off our son’s misfortunes than helping make things right. We hired educational consultants and learned they were more interested in good relations with the school district than fighting for the services and accommodations they admitted they knew our nonspeaking Autistic/Black/Indigenous/ American/Turkish/Italian/Hispanic son needed to achieve the dream of a “free and appropriate” education.  Our frustration when he came home starving each day and we couldn’t prove why built on itself until May 19th, the horrific day at an IEP meeting when they brought my lovely 5 year old to the room and he hugged me and kept signing “food” and his cruel, disgusting teacher blithely said “um, we didn’t feed him lunch. He’s probably hungry. I’ll get some food for him.” It was 3 pm and I wanted to lunge across the meeting table and break my ages old vow of nonviolence and slap that monster WHY DID YOU NOT FEED MY SON WHEN WE PAY FOR LUNCHES IN ADVANCE AND BROUGHT EXTRA FOOD?!?  The shock of the matter of fact public revelation in the middle of a recorded IEP meeting robbed me of speech.

Tic…Tic…Tic

New school, more harm, more lies, classrooms segregated by race, seclusion, more veiled threats, and one day, that awful phone call from another principal her voice breaking “we’ve lost your son. We don’t know when he went missing. We don’t know how long he’s been missing. We don't know how he could have exited the building.”

Tic…Tic…Tic… 

Disinterested local police, district school administrators more interested in managing the risk of a potential lawsuit and we are the only ones shouting OH MY GOD WHERE IS OUR SON? His father begins running from his office, running from the other side of Maryland towards the place where they lost our son while I scream silently over and over because he loves cars and buses and the ebb and flow of traffic and it is a cold February day and one of them says he has no shoes and no coat and I collapse in a chair but I can't hear myself because my daughter is shaking me and screaming "what's wrong what's wrong!?!" Calling the whole world because NO ONE IS HELPING and there is a pond behind the school and he can’t swim

Tic…Tic…Tic… 
Found? Some stranger, a man, brings him, wet, scared, and asks “is this his school?” The principal stutters over the phone, “Someone found him. He’s okay; he’s with the school nurse.” I look at his big sister and say the words and we rush, running to get him. The principal stands as if waiting for a physical blow from me. I look down at her, not hearing or caring what she's saying and almost whisper, “give me my son.” My husband is howling at the superintendent of schools and howling at the train that seems to not be moving fast enough and howling with the fear that irreparable harm may have been done to his youngest child and only son. Meanwhile his sister and I grab our boy, my oldest child cradling her baby brother like porcelain, nearly carrying him out the school doors although he is over half her weight and so tall his head has nearly reached her shoulders and we RUN out of that hell hole and now we sit at his doctor’s office, where all the staff heard and the doctor who should have closed shop an hour ago is waiting to do that awful exam for signs of rape and we wait, wait, wait while the doctor calms him and wait, not breathing and when he smiles at us with tears standing in his eyes and whispers “he’s okay, he’s okay” his sister and I hug one another and cry and cry until he becomes worried and begins to fuss. We hug him and dress him and place him in his special needs stroller and wheel him out and someone from the staff mumbles, “we have your insurance but today’s visit is free” and it is only then that we see that the staff is standing, tears falling silently from faces that once wore the indifferent and uncomfortable expressions of those who can’t tolerate disabled children but must serve them because they mean a paycheck.

Tic…Tic…Tic… Tic… …Boom went our lives.
 Because one-thing some school districts know how to do is cover up and retaliate.  School is no longer safe; in fact it never was. I look at the Montessori work we did on school breaks, do a consult with a Montessori teacher and then comes the gathering of equipment and the paperwork filing and the swearing under my breath that they would not put our son in danger again. How do I take this on? How do I educate him? I am overwhelmed. The room spins.
Boom!
Our daughter changes her college plans. She stays in Maryland. She changes her major. She helps me teach her brother, becoming his paraprofessional and his respite care provider when she learns of exhaustion in me so acute I collapse. My husband works for two for a very long time. He brings home his paycheck and moonlights to bring in mine. I meet my son, without barriers, without being told how to treat him, without anyone telling me I can’t handle him or he can’t learn or retain what is taught him for the first time since his diagnosis.

He is stubborn. So stubborn I laugh in frustration. So charming I am undone. So loud with use of body language his presence fills a room, yet so quiet that I can hear our breaths in the silence of the day’s tasks.  He and I begin our quiet, bright dance of give and take. I was meant to teach him, but he patiently teaches me, to tolerate, to listen with my eyes as well as my ears, to see the places, things, textures that overwhelm him, to read and prep and comfort and let him go and grow.

Afterlife is silent. 
Beyond the blasted landscape of disappointment and destroyed trust, a green sprout of optimism fights its way out. Hope after harm. He slowly begins to smile again. Year one after apocalypse and the screaming when anyone male enters a room stops. Year three is the beginning of food security. He begins to really believe he won’t go hungry even if he misbehaves. Year four and he’s laughing on FaceTime as his father uses his lunch break to see his son each day.
Father and son FaceTime while I act as IT support for our son. ©Kerima Cevik


Afterlife is safe. 
It is warmed with our happiness and peace of mind. It is filled with the few sounds our son makes. Laughter, sometimes nervous giggles, the sound of his running jumping and hooting, the silent gestures that comprise our arguments when he refuses to do his schoolwork. Year five sees a new growth. We spend the year teaching him to not be afraid of the dark. No matter what we sit together and hold fast to one another. Never secluded again. He learns to laugh at the night and look at the moon as his friend.

Afterlife cannot be forever.
He will have to return to the outside world, and the cruel, racist, ableist, creatures that live in it. The greater world is his birthright and mine. He must survive the world beyond the sweetness of afterlife. Year five we try to ease him back but schools hold grudges and his is the first of a landslide of cases that nearly ruin a principal’s career. So off we go, to another county, to begin again.

Afterlife is greener now. 
Tiny verdant sprouts of hope for his future are growing into a lush green meadow of rye, ripening to gold, waiting for harvest. The understanding in this new location is as deep as the ignorance was in the other. Trust is building a path towards our son. The bricks leading back to inclusion? We just don’t know.
The apocalypse is not quite, but almost, forgotten.

Afterlife is beautiful. 
But beautiful Autistic boys grow up and need to become strong men. Time for mother and father to keep opening the path to the greater world.

Life is calling.


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For my beloved husband and children in loving gratitude

With thanks to Selene DePackh, because who we are is not the pain we endure, but those  beautiful things we create in spite of it.

Friday, January 15, 2016

On Parent Activism And Mediating the Autism Wars

"A Chinese bamboo book, open to display the binding and contents. This copy of The Art of War (on the cover, "孫子兵法") by Sun Tzu is part of a collection at the University of California, Riverside. The cover also reads "乾隆御書", meaning it was either commissioned or transcribed by the Qianlong Emperor."  Wikipedia photo credit vlasta2, bluefootedbooby on flickr.com - http://flickr.com/photos/bluefootedbooby/370458424/


Victorious warriors win first and then go to war, while defeated warriors go to war first and then seek to win. 
Sun Tzu, The Art Of War



Happy New Year.

It took a long while for me to decide what to post first this year. So many topics matter, and so much is happening simultaneously. The topic I thought I might express an opinion on to start off 2016 is an aspect of the journey involved with the idea of being an ally to autistic people and what that should mean.




What happens to some of us who are parent advocates is a kind of euphoria at being thought of by activists as an ally. And that can lead to a grave mistake in thinking. Because many parent allies view themselves as meditators in the autism wars between the medical model community parents and professionals, autism parents in general, and autistic adults, pro disability rights and human rights stakeholders and activists. By definition, allies are not self appointed and this understanding expands to include self designations as bridges between parents and autistic adults in our community. Such bridges, or potential mediators already exist. If we are to be parent allies, we should understand that those roles are not ours.




Autism is unique because in previous generations, it has gone undiagnosed or misdiagnosed for the lifetimes of many people. This is particularly true for autistic women. And while this is not true for my son and his peers, for many autistics autism expresses as an invisible disability. So what exists in our community are a very large population of parents who discover when their children are diagnosed that they are also autistic. We also have quite capable autistic parents diagnosed as children who marry and have children. Those autistic parents are the mediators and bridges in our community. They are in fact the only population of stakeholders in our community who completely understand what it means to be autistic and what it means to parent autistic children.




Meaning that no matter how beloved an ally a parent is, unless that parent is both autistic and a parent they are not equipped to bridge the gaps between groups of stakeholders in the autism community. Period. While a parent may also express neurodivergence, it does not necessarily make them autistic. So while their voices are invaluable and necessary to the autism conversation, autistic parents are the group that sits firmly in both sides of the autism wars for personhood, inclusion, accommodation, and representation.


The role of those of us who are parents who do not carry the autism label is to reach out to autistic parents, amplify their voices, and ask how we can assist them in their roles as the voices in two stakeholder roles. In doing so, we must understand that our voices have privilege, and amplification of marginalized voices does not diminish our say or sway in the community.



Tuesday, November 10, 2015

Surviving Inclusion: Non Speaking Autistic Communication And Ableism

"Not only does God play dice, but... he sometimes throws them where they cannot be seen."
Stephen Hawking


Mustafa using sign language to tell his sister what he wants to buy ©K.Cevik
The quote above reminds me that everyone and everything has value, and our not being aware of what value a human being has cannot negate that worth.

I've been involved with other things for awhile. Things happening in the non virtual world, or 'meat space' if you will, motivated me to try and talk about some other things that have been on my mind about communication, parenting, and the presumption of competence.

An young autistic friend of mine, Emma Zurcher-Long, learned to type rercently and now can communicate by typing independently. She is an excellent example that assistive technology assessments and pathways should be continually offered to autistic loved ones no matter what their age, regardless of whether or not prior attempts fail. The tendency of conventional wisdom driven autism nonprofits to constantly emphasize early intervention, then deem the autistic nonspeaking individual 'doomed' if they cannot meet certain criteria after such intervention  or by a certain age is incorrect . 

Regardless of age, the most important bar to community access, autonomy, self advocacy, and proper care autistic nonspeaking people face is lack of communication support. Schools don't prioritize this in IEPs. At a time when some schools are thwarting the Individuals with Disabilities Education Improvement Act (IDEIA) by using online IEP formats as templates to standardize goals by disability rather than creating truly individualized education plans for disabled students, we parents must be vigilant about insuring that communication is the highest goal for our nonspeaking autistic students. 

 Annual assistive technology assessments should be required for nonspeaking autistic students until an AAC system is found that is a good match. In addition, overall student performance enrichment by intensive speech service support should continue until the individual student has mastered  AAC device based communication. This means mastery sufficient to use it to communicate effectively with their teaching team in an inclusive classroom setting. Establishing a solid communication foundation between nonspeaking students and all teaching teams that will facilitate their educational lives both now and in the future is critical. This is rarely if ever done in the present special education classroom or in what passes for inclusive classrooms in too many public schools. It is the primary bar to inclusion of nonspeaking students in the general education classroom. While we are all chasing the dream of the fully inclusive classroom as the natural socialization tool for disabled children, we are overlooking giving them the primary means of accessing that or any other environment that is their right.

The lack of comprehensive augmentative communication support allows abuse, neglect,  and presumption of incompetence of the nonspeaking student.

My nonspeaking friends and colleagues' honest revelations of the ups and downs in their life narratives are important because this valuable insight helps us understand that even if we happen to hit on an AAC support that allows our children to type or communicate independently and fluently tomorrow, that doesn't mean that our disabled loved ones will suddenly be 'indistinguishable from their peers', and that is a myth too many parents who manage to get their kids to type grab onto and it is the root of the ableism based abuse that happens to nonspeaking autistics even after they acquire a means to communicate. 

The example of what happened to Carly Fleischmann after she began spontaneously typing is before us. She has permanently lost her ability to type, and must find other ways to build words, because neurodivergent Carly continued to be unacceptable to her parents, despite the fact that their ableism throughout her life caused the pain and self loathing she now carries. Disability doesn't disappear because someone is able to communicate better or because technology offers greater community access. Those of us who parent and educate need to grasp that and accept that communication doesn't equal a 'cure' of disability. Nor does being able to type to communicate mean we have the right to demand our view of 'normalcy' from a divergent individual.

The critical nature of gaining, then mastering device supported communication means that those autistic individuals may be better able to explain when they've erred and for us who are parents, that means the doors to facilitating and mentoring open wider. Gaining AAC support also means the chance for diagnosis of conditions like auditory processing disorders that require the person being tested be able to communicate what they hear during a test. So if you are carers of autistic people who have gained communication skills through AAC support, consider testing for conditions that may still be undiagnosed before placing increased demands on your loved ones they may not be able to process.

As people grow up and grow older, they will argue. Another hold over from both the angelic disabled child infantilization and the idealized child myth is the concept that somehow our disabled offspring don’t have a right to lose their tempers, behave badly, or fail in the same way non disabled offspring do. We parents, educators, and carers need to stop putting that kind of expectation of compliant perfection on our disabled nonspeaking loved ones and students. Why then is compliance and correction writ so large in autism support and intervention? We need to educate the communities outside of ours that our children have a right to express frustration, sadness, disappointment, fear and anger as long as they cause no harm to themselves and others. We have this same expectation of every young person in society, yet our expectations of our disabled young people are neither fair nor reasonable.

What we are not doing in the disability rights advocacy community is stressing that failures and behavioral missteps are how we humans learn.  We were never meant to be the behavioral prison guards of our own children. We were meant to parent them. Once we change that attitude, which is gaslighted into our brains by all those meant to provide service and support for our children, we will be at the doorstep of the breakthroughs we need to properly parent our own autistic children regardless of age, behavioral history, perceived degree of disability, or any other bar to a parent simply being a parent to their children. 

 Some nonspeaking people may never be able to communicate as fluently as others. Some maybe truly operating at a cognitive level that is infantile. We must accept everyone as they are, and not reject association with a nonspeaking adult that is not the magic autistic trope of the silent shaman who wiggles his nose and causes miracles. We have to accept neurodivergence in all expressions and at all levels.

Many people, including neurodivergent people, either refuse to presume that a person with global developmental challenges can live and achieve an autonomous quality of life as an adult with the proper supports or refuse to accept this expression of autism as being part of the greater autism community. Everyone who holds these attitudes needs to realize that they are impeding the uplifting of an entire community and being part of a caste system that does not truly benefit anyone. When you act based on function labels you not only isolate  your peers but you do the dirty work of ableist people whose goal is to divide this very large block of people into smaller, more manageable groups who can then be denied the supports and services they need.  Wake up and understand that my son is just as great a person as a savant, an autistic who uses verbal speech, or a famous autistic individual whose head is filled with the helium of false praise so common on social media.

Degree of disability should never matter in the fight for human rights. Just as when a person who identifies as Black is Black whether they have vitiligo or not, a person who is Autistic is Autistic whether you are comfortable with their visible degree of disability or not. If people cannot tolerate being around teens like my son and his peers, then they need to take a good hard look about their own struggles with internalized ableism, rather than redefining autism to suit their inability to accept a group of people who share their neurology.

O. J. Brigance uses eye gaze technology to give the pivotal testimony against euthanasia legislation in Maryland.



One more very important thing about assistive technology for communication. If the chosen method of communication does not lead to the nonspeaking autistic user being able to live an autonomous life, then a better match must be found. Assistive technology only works if the end user is ultimately able to communicate whether parents or care providers are there or not. Note that both O.J. Brigance and Stephen Hawking have remained productive in the advanced stages of ALS because their AAC communication technology allows them to communicate autonomously with eye gaze technology. This method of commucation support was well thought out when they were at a stage of greater mobility. When we choose assistive technology we must be forward thinking by making years and we must give our students the foundation to be able to shift from older systems to modern, more seamless ones requiring less outside support. As a community, we should be lobbying for funding to expand the use of the most advanced technology for our own children, fighting for their autonomy, rather than warring over causation. 

May all your parenting, teaching, peer mentoring, or self advocating days be joyful ones. 


~~~~~~~~~~~~~
For my Son, Magnificent Mustafa N. Çevik and his outstanding father C.Nuri Çevik, Emma Zurcher-Long and Ariane Zurcher, Henry Frost and Lauri Swan Hunt

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References:
For more information about under the radar autistics who type independently with AAC devices:
On The Silenced Voice of Carly Fleischmann