AutisticWhileBlack: Race, AAC, and The Right to The Voice of One's Peers

 

In 2017, O, the Oprah Magazine, commissioned a famous white photographer, Chris Buck, to deliver a series of shocking photos on the reality of how racial inequality is socialized into the American psyche. The most striking photo is of a white child with long blonde hair standing in front of a shop window filled with Black dolls. 

Had Oprah's team thought this through, they would have chosen a talented Black photographer to both present the topic and uplift Black photographers from obscurity. But the reality of what life was like for me and all my peers as a child was clearly displayed in that script flipped series of magazine photos. 

Asking me why I want anything specifically African American for my Black autistic son is a highly painful personal question. The answer lies in the reality thrown into stark relief in the photos displayed in that magazine. We are taught through every channel of mass communication that our societal worth is less than whites. This system attempts to subliminally teach us that we are not humans who matter. It is meant to remind us that the world is not made for us.

Our country dictates the scope of our culture and societal value by how we make the dominant culture feel and react, and how we serve and entertain them. These views of speech, beauty, justice are subliminally infused in our daily lives. Our hair is "not right" because the standard of beauty is white hair, which is largely straight. Our speech is "not right" because our English has a lilt and flows like music. It is okay to have a foreign accent but not okay to have an Ebonic one. We were taught to eliminate the Blackness from our voices if we wanted to succeed and lift our race above poverty.  It seems to be okay for white people to mimic and mock our speech, or to profit from our athleticism, creativity, and intelligence, but it has been taught to the white majority that to date, the African American Vernacular (AAVE or AAE) is a sign of a lesser command of English rather than a cultural variation. AAE has been used to diminish us and make us feel that we are not educated enough or assimilated enough to be acceptable to mainstream society. It has been used to excuse injustices like disparities in criminal justice, healthcare, and work-life benefits.

Asking me why would I want an Assistive Augmentative Communication (AAC) device made to serve my son to have the voice of my Black brother is like asking why I would want my son to have a Black prosthetic arm instead of a white one. The idea of having this option is long overdue. If my son could use verbal speech, his voice would not sound like any of the voices on his current AAC devices. It is a question that shouldn't have to be asked. It matters more than anything that a person has the equivalent of a speech device made for the entirety of who that individual is. And right now, in 2020, that option does not exist for my son and his AAC using Black autistic peers.

But this question is extremely painful for me. There was a brief part of our son's life when he could use verbal speech. Somewhere we have a video of him speaking Turkish to me. It happened when his father was asleep and I was recording. Our son asked if he could have some food. His voice was the African American toddler version of his father's. His Turkish was beautiful. I witnessed that he fully understood the Spanish other toddlers at the playground spoke too. He responded appropriately to all their requests he join them in play and on various pieces of playground equipment. 

I am a heritage Spanish speaker. My husband is a heritage Turkish speaker and our daughter is an interpreter and educator. Realizing our son had a facility for being multilingual with the ability to smoothly code-switch from one language to another was one of the happiest days of my life.

Our son still has that talent for a receptive understanding of many languages. But the hope of verbal speech, impeccable AAE/Turkish /English/Spanish with that distinct AAE lilt is gone. The idea that he could have a voice that even slightly resembles the one he lost in his assistive technology is both exciting and heartbreaking. 

It is heartbreaking that I must explain why this matters. It is heartbreaking because we are in the year 2020 and it should not have taken this long to realize this need. It is heartbreaking because asking me this question brings a great deal of pain to me. It forces me to remember that generations of our people have had to justify our right to the same quality of life as white American society. It reminds me that I was the little Black girl looking in the window at all the white dolls and not finding any who looked like me.

We have a right to the same quality of life white disabled people already enjoy. Asking me to give reasons why a nonspeaking autistic Black teen would need an African American voice on his AAC device shows how much further we need to travel to get there.

P.S. The need for a variety of African American voices on AAC devices is also a matter of hope. Hope that someday, AAC device access will not be blocked by affordability. A disabled Black nonspeaker's right to the assistive technology they need to communicate should not be something unaffordable to most of our people. AAC devices, like prosthetics for physical disabilities, should be available and affordable to all, regardless of race.

AutisticWhileBlack #SaveDarius Criminal Justice 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 of the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.

I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. When he was in another state, I wondered why it was not okay to give him a small bus, a supervised rural bus route, and allow him to spend the remainder of his days driving it. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.

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 side by side comparisons happen. So let's look at turning points in the lives of two teenagers with the same diagnosis of Aspergers.

 Blogger Brobrubel summarizes criminal justice and government overreach by reminding us of what justice looked like for Jack Robison, and Neili Latson both were teens with a diagnosis of Asperger's  Despite the use of an ableist definition of autism, Brobrubel shows the disparity in our criminal justice clearly.
Here is his 2011 essay, Autism in black and white.

Please read it and try and understand the reality of being Autistic While Black in America.Then share this, and remember that we who are African American are the first to feel this weight of violence but we are not the last. Injustice expands like a balloon if those who believe they are protected from it ignore it.
Peace.

"The Web site Liquor & Spice caught this in the New York Times this weekend involving a 19-year-old kid named Jack Robison in Massachusetts with Asperger’s syndrome, a form of autism:

" A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion."

" By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory."

" And then caught this information involving a case in Virginia".

"Reginald “Neli” Latson, is a 19 year-old autistic young man, who on the morning of May 24, 2010, sat in the grass outside the local library in Stafford, Va., and waited for it to open. Police allege that it was reported that there was a suspicious black male who had a gun. Deputy Calverley then approached Latson and searched him for a gun. No gun was found. Calverly asked Latson for his name, and Latson refused and tried to walk away as he had committed no crime. Calverly then grabbed Latson and attempted to arrest him without reading him his Miranda Rights or calling for backup.

After a 3-day trial, Latson was found guilty of assaulting a law enforcement officer, among other charges, and 10 1/2 years in prison was recommended. Latson’s defense centered around the fact that he has Asperger’s syndrome, part of the autism spectrum, ...  "

" Massachusetts didn’t see a crime in making explosives at home. Virginia saw a crime in waiting to go to the library. Robison was blowing things up. Latson was waiting for the library to open. Robison is rewarded. Latson is going to jail."

" "Robison is white. Latson is black." 

"We don’t want to admit it, but race does matter."

Autism Month Essays: Against The Presumption of Incompetence

Mu in a green hoodie in his favorite spot, debating whether or
not to visit the wild ducks in the pond. Posted as always with
the permission of the subject. © Kerima Cevik

When parenting both our children, my husband and I tried to make certain they knew exactly who they were and hoped they eventually understood that the labels they carried were things they could take ownership of and apply to help them navigate their lives more effectively. 

Our daughter has a clear idea of the entire scope of her multiracial and multicultural identity. Our multiracial, multicultural, nonspeaking autistic son is 15. I have tried my best to ensure he knows his heritage despite communication challenges. I have found other ways of showing him who he is; of indicating to him it is okay to be who he is and that we are proud that he is our son as he is. We want him to know we will be doing our best to support his efforts to live an autonomous life, and such a life must begin with an acceptance of his entire identity.

My son likes to watch Disney World travel infomercials on YouTube. One day he came into the office I share with him to show me a video. The video was a Disney Parks episode where parents were describing what the Disney experience was like with their daughter, who carried an ID/DD (Intellectual Disability/Developmental Disability) label. At the point where she described her daughter as having a developmental disability, my son stopped the video and put my hand on the child's image and then placed my hand on his head. I shook my head yes in response. I said "Yes, son. You are like her. She has a diagnosis of Down Syndrome. You are Autistic."  He hugged me and left the room. I stared after him, an emotional mess, stunned with surprise, shock, sadness, and relief, unknowingly shedding silent tears of pride. 

Knowing ourselves and understanding where we are similar and different from others is a life-altering affirmation of one's competence. My son arrived at this understanding and communicated his suspicions to me without uttering a word.Grasping the scope of one's disability is a giant step in self-advocacy.

 To some degree, everyone needs certain labels. They form the framework of how we begin to define ourselves. But many labels are not positive or even accurate ones, and sometimes they are forced upon us. In fact it may not be the label itself but how we ascribe meaning to it in everyday usage that may devastate. Some labels carry the baggage of bigotry. 

Many parents who impose the goal of becoming indistinguishable from their typical peers on their autistic children feel the idea of acknowledging that their child may carry an ID/DD label is an abhorrent barrier to normalizing them. Additionally, some schools abuse the power to label a child ID/DD on IEP documents because they want to segregate the child from typical peers when said child might do better with supports in an inclusive classroom. The results of either of these circumstances are some devastating potential outcomes to the autistic student that parents and professionals don't spend enough time considering when making arbitrary decisions for or against the use of the ID/DD label. 

I began thinking about how many autistic students were labeled ID/DD and how they came to terms with that label a great deal after my son came to me to question his own identity in gestural language. I was trying to catch up on my friends' status posts on Facebook when I read an entire thread that brought the entire question of the ID/DD label into sharp, painful focus. It was about a family being pressured by an IEP team to add an ID label to their child's disability designations. Several people who were academics, educators, activists and autistic advocates who carried the twice exceptional label were tagged to give their input on the advantages and disadvantages of accepting such a label. I was not one of those tagged.

My son carries the ID/DD label, not by choice but because that is his medical reality. If there is pressure on any family in a school setting to add this label, they need to understand that whatever they decide potentially changes the entire quality of their child's educational future, and this is not always a positive change. The aversion and abhorrence that people who should know better displayed when discussing accepting this label truly disturbed me.

 I'll try to explain why.

I came into this world with dark skin. I am no more able to hide or deny this identity than my son is able to hide or deny his ID label. Yes,  the ID label comes with a heavy burden to fight society's lifelong presumption of incompetence. There was a time when African American labels came with the presumption of incompetence as well as the false accusation that the amount of melanin in one's skin determined who was more intelligent. We dark-skinned people continue to fight these stereotypes. 

Being an African American woman carries lifelong challenges and injustices with it that made me more aware of ableism directed at my son. Despite the hardship, we now know that a clear grasp of a person's identity can give them self-respect that hiding it in shame cannot. The idea that because of these hardships, an identity is something that can be opted out of is wrong. What needed to be said in this thread that wasn't was does this child have a full professional diagnosis? Does that diagnosis include an ID label? If it does, then depriving them of the support they need by hiding this is like leaving a wheelchair user's chair at their departure airport. 

I thought it was our job to right the wrong of institutionalized presumptions of incompetence. That bit of ableism is the fundamental rock in the wall of segregation from every opportunity that keeps our loved ones from their rightful place in our society. History shows clearly that presuming anyone incompetent begins an othering of groups that slides into catastrophic abuses and oppression. There was an air of defeatism in this thread asking whether or not to allow the ID label on a child's educational record that brought me down. Our loved ones will always feel they are less than others if we simply accept the wrong-headed belief that giving a person an ID/DD label equals a lessening of their personhood.

I just don't know when we will get past the idea that if a person cannot speak or learn in the way the average person can, they are less than others in society. We tend to blame our student's disabilities for our societal failure to meet their educational needs when the truth is we have not changed the fundamentals of the way we educate our children since the industrial revolution. Why aren't we fighting to rethink and redesign learning to reach ID/DD students' needs and learning potentials? We simply passively accept things as they are. And each year, our offspring are given less support and less access to learning particularly when they are made to wear that label.

The largest issues I have about parental fear of the ID label and the presumption of incompetence is that if we do not fight the baggage forced on our loved ones with their neurological identity. How can we teach them allow them to carry this label with pride unless we can let our children know with sincerity that ID/DD labels are nothing to be ashamed of?

I wonder if this defeatist attitude contributes to depression and anxiety in our loved ones? I also worry  that denying knowledge about a critical aspect of a student's disability enables the potential devastation to the mental health of the student not aware of why they may have challenges in areas where their peers are succeeding, I wonder how much trying to opt out of ID/DD labels inadvertently slows progress creating educational methods that may maximize our students' potential because distaste for the ID/DD perpetuates our society's  presumption of incompetence. 

It is our responsibility to make our children matter by fully understanding what accepting the ID/DD label means. They can't accept themselves if we are afraid to say whoever they are, whatever their disability constellation entails, we accept them. Believe me, our offspring feel our shame and insincerity and internalize it.

We parents passionately demand better schools, better IEPs, and an end to the use of the r-word. I am thinking that we also need to take a hard look at our own attitudes and make an active effort to change them so our offspring can sense that shift organically and not internalize any subliminal ableism about the labels used to identify their neurology. 

Peace 

Facebook Notes: Everyday Ableism

Image of Mu, a Hispanic presenting biracial four-year-old male
in a blue hooded coat sitting in a special needs stroller Credit Kerima Cevik

When Mu was very young, we used to make these contrarian decisions on occasion just to fight the power. One of those decisions used to entail going out to family brunch on Sundays to places where people my color married to people Nuri’s color and producing offspring with our son's biracial identity and degree of disability were not welcome.
I sometimes don’t know what we were thinking, other than the fact that in this day and age, we should have a right to eat where ever we wanted.

So it was that we found ourselves at a particular location of Atlanta Bread Company on a Sunday for brunch, and Mu was about the age he was in the featured photo above. During these outings, the goal was never to stay longer than he could tolerate. If I saw the early signs that he was not going to take anymore we had a protocol, and that was Nuri paid the bill and packaged uneaten meals while I got him back in his wheels and he and I rolled out of the restaurant and into fresh air asap.

We usually gave him about 10 minutes before his tolerance was up. 15 minutes if the food came out quickly and there were no loud machines or blaring music. 

I settled him out of his special needs stroller and helped him prop comfortably in the booth next to me. He was sitting, standing, stimming, vocalizing happily and basically being autistic. We gave our order, Nuri asking for Mu’s food to be brought immediately and spoke quietly, being ready to grab for Mu quickly if he tried to lean over too far or otherwise engage in acrobatics. This was a carefully orchestrated dance of movement, stimming, and conversation, punctuated with occasional parental rescue lunges and replacing Mu in his seat or helping him eat his brunch as it came to our table.

While we were eating on this day, we were subjected of course to gaping stares, particularly from one stylishly dressed elderly white female in makeup that she wasn’t aware settled in the creases and lines of her face. She was eating with her husband and another couple directly forward and to the left of our booth. I deliberately ignored her until Mu had reached his tolerance limit. I quickly lifted him into his stroller and only then realized she was determined to block Mu’s stroller from exiting by pushing her chair in our path. 

“You know, our daughter has one of those,” she said to me. “Excuse me?” “How do you mean?” I answered. “One of those.” “Like your son.” “A (insert r-word) kid.” “Did you know there is a place called the Arc where you can leave him so you don’t bring him here?” “He’s better off there with his kind.” There was a collective intake of breath in the restaurant. You could hear a pin drop. 

I smiled at her, a smile our daughter tells me is terrifying, deliberately pushing Mu’s chair closer. He became more agitated and threw a sharp vocalization at her making her flinch.“I know the Arc very well.” “Do you want to know what they told me about my son?” I answered loudly enough for the whole restaurant to hear while retrieving his favorite stim toy from his backpack and handing it to him to calm him. 

“Sure.” she replied.
“The Arc said to take him out in his community, everywhere, all the time.”

I held my head up in righteous indignation and Nuri suddenly stood beside me looking down at her and said: “is everything alright here honey?” We both stared her down and red-faced, she was forced to move her chair forward. Several other diners, embarrassed, moved chairs and tables to allow me to wheel Mu out of there. Two people came up to us on our way out to apologize for the woman’s behavior. A waiter apologized and held the door open for us. Nuri waited for his credit card and joined us outside.

Once we were on the tree-lined walk home, Mu immediately calmed down. Nuri took over the job of pushing the stroller. It was a beautiful day for a leisurely stroll outside. After about five minutes we looked at one another and burst out laughing.

I leaned over and lightly ruffled Mu’s hair. “Well done, Mustafa,” I whispered to him. 

This isn’t an unusual event. It just ended well. It happens so frequently that sometimes I forget it isn’t right nor it is the way other families have to live.

We are fortunate enough to love one another and see the bad attitudes of others towards our marriage and our son as their problem rather than blame him or his neurology for their discomfort. He is a long way from the wiggly child he was at restaurants now. But his disability is apparent, and we still get the gaping stares, the blatant ableism, additional racist comments, and the attitude.

I don’t enjoy staring down ableist old white ladies who despise their own grandchildren.

But then again, no one is going to denigrate our son or her grandson for that matter. 

This is the job of being parents.  This is also my job as an activist. 

These are the people and the mentality we are trying to counter. It is a hell of a job, but somebody’s got to do it.

To all Autism families. It isn't their neurology's fault. The fault is in generations of people who weren't brought up to know that different doesn't mean undesirable or less. It just means different.

Onward, to battling the injustice in a world where our children do belong, to give them their rightful place in society.

Casey Neistat, Nike, Inspiration Porn, Assistive Technology and Autism

Mu in a green hoodie, in mid-stim. ©K. Cevik posted
with permission of the subject

I'm as flawed a human as anyone else, and on February 23rd of this year, I faceplanted right into a campaign to market Nike HyperAdapt shoes. Anyone half my age might have seen it, but me, highly emotional eternal researcher for any assistive technology that might improve the quality of Mu's life, was completely clueless and therefore made a fool of myself tweeting my issues and concerns with a giveaway campaign for a single pair of Nike's HyperAdapt shoes on social media that was meant to give a boost to, Nike HyperAdapt shoes, Casey Neistat, and the YouTube channel of a Christian, c5-c6 quadriplegic YouTube creator named Dustin.

Silly me, I thought this was a random act of kindness.

So let me give you all some backstory.

Remember when  Eddie Murphy did a satirical sketch on SNL called "White Like Me" , where he posed as an undercover white man for a day to see how the other half lived? One of the premises of the sketch was that "white people gave one another things for free." Casey Neistat, a YouTube personality, and influencer marketing millionaire is the consummate first person singular branding of the white man that makes Eddie Murphy's mockumentary true.

Casey Neistat is the persona of  the white dude who people give things to for free.

Mr. Neistat got a free upgrade to a $21,000 first class seat on Emirates airlines and his vlog episode about it went viral. He's been 'gifted' high-tech toys like drones to test (sometimes before they are released for public consumption) and as a result, he is able to stage the occasional giveaway of said gadgets. He has a legion of loyal subscribers to his YouTube channel following his every adventure.

I subscribed, wondering what all the hype was about. I can tell you, the man knows how to tell a story, and how to turn any product placement into an anti-ad story that just happened to fall into the greater story of his day to day life.

 Mr. Neistat also flexes his Internet influencer muscles by lending his massive following to some crowdfunding efforts. What he's learned is that he has tremendous power to reach people and get them to act for good and millions of people trust the Casey they see on his vlogs. These efforts when added to self-deprecatingly candid vlogs also humanize him enough to keep his audience from hating the things he gets 'for free', like the $18,000 a night hotel room upgrade he tweeted and vlogged about:

I stayed in a hotel room that costs $18,000 a night. seriously. https://t.co/3sJsJgZqF9 pic.twitter.com/JAftWVL7tB

— Casey Neistat (@CaseyNeistat) May 19, 2016

Because his brand is being that white dude who went from a high school dropout to being a millionaire by just working hard at being a dude and doing what he's always wanted to do he manages to exude the chill dude tooling around NYC on his boosted board who no one has a reason to hate.

 Mr. Neistat's latest philanthropical giveaway/ad for Nike/ad for YouTube caught me off guard. Here's his giveaway story:

 I foolishly tweeted away advice and concerns and basically only realized too late the intent here was audience share and inspiration porn, and neither Nike nor Neistat would care a whit about some parent of some nonwhite nonverbal non-target audience autistic teen nor her views on why objectifying disabled people or asking them or their family members to clamour for a single pair of free shoes was degrading to their dignity.  Meanwhile, a week later, the story of the wonderful HyperAdapt shoes just happily ending up in a good Christian visibly disabled fellow YouTuber's hands was serendipitous Hollywood film ending stuff:

The Neistat giveaway and triple marketing win for him generated headlines that read, "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers." By generating excitement then giving the shoes away to a fellow YouTuber who fit the profile of looking disabled enough to "deserve" the shoes and be inspirational enough to post a great gratitude story video, the entire event gave unsolicited advertising points to Nike, improved Casey Neistat's brand, promoted a fellow YouTuber's brand, and offered up just the right dose of inspiration porn for all. The only foolish person in this little social media adventure was me.

 What was I thinking? I tried tweeting to Neistat.  He completely ignored me of course. Nike, Neistat, and YouTube had their moment of disability inspiration porn, and a deserving disabled white male got a great pair of high-tech shoes out of it that as he [Dustin] put it, will last a very long time because he's a wheelchair user.

They never saw the incongruity of $720 shoes that 90 percent of the people who need them could not afford to buy, maintain or use. Autistic teens like my son, who can't speak to lobby for free shoes would not be viewed by Neistat as disabled enough because he wanted someone physically disabled. Everyone needed to say, "ah, now that person is truly disabled. He deserved those $720 shoes." The visibly disabled person could not, however, have a developmental disability. That would be uncomfortable for this massive audience. So while I was tweeting away about dignity for autistic teens, poverty that made this assistive technology inaccessible to hundreds of autistic adults and young people, the terrible risks of owning $720 sneakers in the neighborhoods most disabled people have to live in, and the idea that even if by some miracle someone could afford these shoes they would most likely be stolen from them or sold to cover rent, food, or critical medications, Neistat and Nike continued blissfully ignoring me.

I should have seen the ignoring happening. But when you're tired from being the primary caregiving parent for your disabled son and you filter technology through the lens of how much actual help it could be for your offspring, you miss clues that you are the interloper in a smoothly run giveaway promotion.

 What I do next is a Hobson's choice, really. If I asked Neistat to go learn about Autism, he'd go off to Autism Speaks or TACA and come back with more inspiration porn, pushing medical model rhetoric. So I am here with lessons learned for all of you, knowing that Neistat and Nike will never read this or learn anything from it, but glad to know I may in writing this takeaway something beyond my own time-wasting tweets on disparities in affordable assistive technology.

1. I believe it is about time we begin really writing these companies and letting them know that most autistic children and adults can't benefit from their products if they can't afford to buy them. Footwear meant to be assistive tech must be affordable.

2. Somehow we must set the limits on objectifying our disabled loved ones. Much of this centers on the idea that many adults who become disabled later in life internalize ableism and have no issue with being objectified and used in this fashion. I am absolutely pro-disabled Youtube creators with their own channels. As long as they realize all wheelchair users are not a monolithic group, and individual experiences, while valuable, cannot be generalized to everyone. We need to be asking ourselves how to counter internalized ableism in people who aren't born disabled.

3. What is and isn't inspiration pornography? Where is the line drawn? Is all inspiration porn bad? I don't have the answers to those questions but need them.

4. We need better ways to let the public know what invisible disability is, and ways of demonstrating that developmental disability is as valid a label as physical disability without humiliating our loved ones. I would not have publicly debased my son by detailing private health information on a global public forum in exchange for free shoes, regardless of their cost.

5. I would like to see assistive technology work grow to a collaborative environment not based on pity politics, but based on the idea that easier ways of doing any task benefit all of a society, therefore, including disabled experts without using them for inspiration porn would be the best way  to engineer solutions that help them navigate the world.

Here is the big lesson for me, Kerima Cevik, autism parent. I need to realize when a headline like "Casey Neistat Is Giving Away a Pair of Nike HyperAdapt Self-Lacing Sneakers" is just a marketing ploy and not try to explain what real world problems autistic people of color and their families have to people who don't really care. The time I wasted trying to get through to companies and personalities who don't care what it means to navigate the world as nonverbal autistic person of color could have been better spent with my son.

Peace.

Mustafa's Dilemma

Mustafa N. Çevik Garibaldi, reading on our deck ©Mrs. Kerima Çevik

Arnaldo Eliud Rios Soto, the 26-year-old autistic man sitting on the pavement with a toy truck in shock in a viral video could be our son. Arnaldo sat beside Charles Kinsey, his trusted aid, helpless while Kinsey was lying on his back with his hands up, shot, with Miami police surrounding both men 50 feet away.

Our son Mustafa has so many similarities to Arnaldo that several people who know our family and have seen Mustafa in person remarked on how much Arnaldo looked like an older version of our son. Like Arnaldo, Mustafa is labeled Hispanic in ethnicity, has an equally lengthy name and heritage, carries the same disability labels although my son carries additional labels to nonspeaking autism and the added stigma of reactions to his name, given in honor of Mustafa Kemal Ataturk and Mustafa's father's grandfather. My son's skin is a tan hue that when combined with his curly hair makes it clear he is not what is considered "white" particularly when he is beside me, his Black, Hispanic, Indigenous mother. Like Arnaldo, he loves toy trucks, cars, and construction vehicles. Like Arnaldo, if a series of sirens sounded around him, and men 50 feet away began to shout at him, he would sit where he was, and hold to one of the objects that never leaves his hand because they provide him sensory calm in a world of violent, changing sensory overloads. Mustafa is Arnaldo's peer. Arnaldo's traumatic event, is Mustafa's dilemma, a potentially disastrous event I have fought to find a way to avert since February 27, 2009, the day I was told my son disappeared from the most restricted public school environment.

That story still hurts, and I've already spoken of it in bits and pieces like the essay "Afterlife ." Suffice it to say that amber alerts weren't created for missing autistic children. And no amount of police training prevents police who want to believe they need to shoot your disabled son or daughter from taking aim and firing.  If the chew tube in your daughter's hand looks like a knife to them, police will shoot to kill first and apologize later even when equipped with tasers and training certificates in autism and disability awareness.

Mustafa's dilemma should not exist. His choices should not be to either never be active in his own community or become a target by wanting to participate in it. People ask, as more autistic males of color like Arnaldo Soto and Tario Anderson are traumatized and more Black autistic young men like Paul Childs die, what can be done. I have been researching the same question since I learned brothers Lance and Ronald Madison  were shot for sport on Danziger bridge while Lance was trying to walk Ronald safely out of New Orleans after Hurricane Katrina. Those police officers, who pleaded guilty and were convicted of killing Ronald Madison, had their convictions overturned and were later released.

Arnaldo Rios Soto ©Miami Herald

The answer to Mustafa's dilemma is not to retaliate against innocent police officers or paint all police as evil. Nor is it to erase these continuing catastrophic events in the name of preserving the public image of law enforcement while these deaths and traumatic events continue to escalate.  But the answer does lie in understanding that it is the solemn duty of law enforcement to lead the reform of a culture that does not hold racist, ableist, and corrupt officers accountable for the mounting deaths and injuries of those vulnerable citizens they engage while on or off duty. I keep waiting for them to step up and disavow coverups and punish those who do wrong. Being a police officer does not and should not equal an exemption from the rule of law. Police leadership in other places has shown that proper police culture builds community trust, reduces risks to both vulnerable citizens and law enforcement officers while decreasing crime. Yet disabled victims, in particular, continue to be blamed for their own deaths, and lack of compliance or erratic behavior are always put forth as the evidence justifying the executions. What Arnaldo witnessed, what we all learned witnessing Charles Kinsey's shooting is very basic to my position that law enforcement autism awareness training alone is failing:

1. Complete compliance and appropriate behavior make no difference to outcomes. 
2. Lack of community training and the resentment of witnessing neurodivergent people included in communities was directly responsible for Charles Kinsey's shooting and similar catastrophic encounters but is being ignored in the lessons learned of each of these deadly events, 
3. The trigger that sets the stage for the catastrophes is inaccurate or deliberately false 911 calls using three code words: black, male, and weapon. All other parts of the call, words like suicidal, or 'toy' before 'gun,' don't matter. 

Why have organizational toolkits, rhetoric, photo ops with powerful lawmakers and law enforcement authorities, autism parents who are law enforcement officers training fellow police, and parents with autistic adult offspring rushing to don the "autism expert trainer" mantle failed to stem the tide of harm washing over disabled people of color?

A. Everyone has skewed the root cause of the problem. Because the problem is misdefined everyone addresses the wrong areas to solve it. Everyone wants to make the solution a need to train police. Catastrophic encounters with police are an outcome symptomatic of the problem, not the problem itself. What people and organizations are doing is very much like seeing people dying in car accidents because of a manufacturing problem that causes brake failure and blaming it on the car's driver. Elaborate solutions are found for improving driving ability, knowing drivers are not the root issue. Cameras record trip data, engines won't start without seat belts, but the problem is the faulty brakes on certain cars, and everyone wonders, as those selling flawed solutions profit by them, why people continue to die. Neurodivergent people cannot continue to be the drivers blamed for the damaged system that is causing their deaths and traumatizing them.

Danziger Bridge, where Ronald Madison and his brother were shot by
New Orleans Police during a shooting spree after Hurricane Katrina
©CNN

Policing is a community effort. Therefore, the primary route to defining the root cause of catastrophic encounters with law enforcement does not begin at what happens when a police officer meets a nonspeaking autistic person. It begins with asking questions like why, if everyone in Arnaldo's group home was known to the community, a citizen of that community would make a false report to 911 that would deploy armed police to an area where there was no gunman. It continues with why the caller isn't being charged with filing a false police report. Because the community knows the group home, and they know the route taken by group home clients and their care providers when walking. So when we look at each of these incidents, the root cause begins with why police were summoned in the first place, what information they were given, and whether the situation required police, guns, and violent endings.

While everyone is lining up to train police departments, no one is training communities to understand and accept neurodivergent community members. Policing is community dependent. Yet no one builds any community to support and include vulnerable community members. Oh everyone has something to say about this, but most never address this because again, we defined the wrong problem, and we are continuing to train police while our people continue to die and become traumatized.

Life qualitatively improves for everyone when communities act to truly include and support neurodivergent people .   The city of Matsudo, near Tokyo, has built a dementia inclusive community and saved dozens of lives and police resources in the process. Their approach is a potential global model for rebooting communities who must learn to include neurodivergent citizens as  the rights to autonomy and community living become as commonplace as they are just.

B. Correctly define the root problem, then make workable multidisciplinary solutions at the community and legislative levels. Having now accurately defined catastrophic encounters with police as the end result of the problem and not the problem itself, let's try to state the actual problem clearly. The problem is that communities are uneducated and unaware of how to deal with neurodivergent members exercising their right to active inclusion. Uneducated and unaware communities mean public entities like schools and public access areas as well as those public servants charged with administrating and maintaining them. Structural ableism then intersects with structural racism (and in our son's case, structural Islamophobia) and the toxic result is Mustafa's dilemma. I've stated multidisciplinary solutions in prior articles and interviews. Those proposals include suggested programs to help build peer-run respite centers for those with a psychiatric disability to recover from moments of crises and receive training in interdependence and supports to help them navigate their community. Or hold training sessions for small businesses and community public servants that help make public spaces safe for autistic people to interact with the public with acceptance and understanding.

C. Don't erase disabled AAC using, activists of color from being the voices of their own experience. There is an appropriation of neurodivergent voices in advocacy that is just heartbreaking. It is one of the residual tragedies of these events is that those who speak out about them with experience, cultural knowledge, and authority are erased while those who have privilege but no true grasp of what it means to live with Mustafa's dilemma set themselves up as experts and are bolstered, sometimes even provided with grants, to authoritatively discuss issues of racism or ableism without discussing the convergence of racism, ableism, and things like Islamophobia, Transphobia, or structural intolerance of psychiatric disability they cannot begin to understand quite simply because they are not POC who are disabled, AAC users, and survivors of such police encounters. So people who are like my son continue to die while others appropriate the voices of activists who can represent him because they are ASL users, nonspeaking, AAC using disabled adult activists who understand intersectionality and the impact on community barriers to inclusion.

Mustafa's dilemma, with its critical high-risk factor of nonverbal communication not being acknowledged by law enforcement officers engaging nonspeaking people, is not addressed sufficiently by disability rights activists who have verbal speech privilege. Its most recent disastrous result was the death of Daniel Harris, an unarmed Deaf community member shot by a police officer while trying to sign to him during a traffic stop.

I consider this an escalation, happening because the deaths of POC by police in general, and nonspeaking disabled Black people, in particular, were allowed to continue without accountability and with misguided calls for law enforcement training rather than reform of a militarized police culture  even in instances where videos clearly show excessive use of deadly force against unarmed people who were subdued, compliant, restrained, or otherwise unable to inflict harm.

D. Create annual, cross-disability, online actions to demand transformative change . I have never seen an annual event that flash-blogs awareness and calls to reform action about the deaths and harm of non-white autistic adults and children in catastrophic encounters with law enforcement. Why is that? I can tell you, dear readers, that one reason is squarely based upon who is dominating the autism conversation in our country. Affluent, white, parents who can keep their own divergent offspring from harm don't see this as an issue until a victim is white or affluent. Excessive use of force against disabled people cannot only matter when the victims are white. Activist across racial, ethnic, and socioeconomic divides should be shouting about injustice as loudly for disabled nonwhite people as we do for white disabled victims. Only this persistent spotlighting by an entire community makes an issue important enough to force lifesaving nationwide legislative change.

We need a noninstitutional,  community-based infrastructure that can respond to disability and mental health related crises without doing harm to the clients needing supports. This is one answer that arises from the accurately defined problem. Change must be multidisciplinary to dismantle structural ableism and racism.

 Multidisciplinary change combines community partners at both the grassroots and federal levels who do not normally collaborate to find real solutions to the properly defined problem and lobby together for funding to support those solutions. Things like having our most radical Black Disabled activists be part of task forces with their state and local police chiefs, disabled disability and mental health activists, and families to reduce violence against autistic and other intersected neurodivergent people of color.

When I say 'radical disabled activists of color,' I don't mean privileged by way of beginning in poverty and leaving it through education or success - I mean people who are still trying to navigate disability in inaccessible poverty ridden, over-policed communities, are known and respected in those communities for their grassroots activism, and continue to know first hand what Mustafa's dilemma looks like because they actually live it on a daily basis.

We individual activists can also start the inclusive community conversation with our own towns and city councils, our own local governments. What national organizations should be doing is presenting this case rather than rushing to stand in line at the police training queue. The less police have to respond to inaccurate 911 calls about neurodivergent people, the less chance of catastrophic encounters. It isn't really their job, you see, to manage disabled people in crisis. It is the responsibility of our entire community to embrace our people. The sooner we cease allowing community ignorance and ableism to keep our loved ones from living as everyone has the right to in this society, the sooner everyone can be part of bringing Mustafa's dilemma to an end.


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References:
Dementia Inclusive Communities in Japan Part of National Plan
http://www.opb.org/news/article/npr-japan-offers-dementia-awareness-courses-to-city-workers/
The Death of Daniel Harris
http://thefreethoughtproject.com/cop-shoots-kills-unarmed-deaf-mute-man/
The Tasering and Arrest of Tario Anderson
http://www.wyff4.com/news/greenville-family-file-complaint-after-autistic-adult-son-is-shocked-with-taser-arrested/30415354
http://intersecteddisability.blogspot.com/2015/01/catastrophic-encounters-with-police.html
On the Shooting Death of Paul Childs
http://www.csmonitor.com/2003/0714/p01s02-ussc.html
On The Shooting of Autistic Ronald Madison and others on the Danziger Bridge
http://www.cnn.com/2016/04/20/us/new-orleans-danziger-bridge-plea-deal/
The Shooting of Charles Kinsey in front of nonspeaking autistic client Arnaldo Rios Soto
https://www.youtube.com/watch?v=iT7HcbEo9WM

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

http://www.biography.com/people/harriet-tubman-9511430

About Tubman replacing Jackson on $10 bill

http://www.politico.com/story/2016/04/treasurys-lew-to-announce-hamilton-to-stay-on-10-bill-222204

About the erasure of Black Autistics from Histories of Autism

http://intersecteddisability.blogspot.com/2016/01/autistic-while-black-erasure-of-blacks.html

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.

 Tic…Tic…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 horsemen 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…

 Tic…Tic…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 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.  Public 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 the 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 the 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. Are 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.

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

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.

Standing At The Intersection of Adolescence, Race, and Disability

Police badge, credit Wiki media commons

This post may wander a bit. Recent events have made me  very emotional, shocked and sad.

Our son is twelve.  His father, sister and I have spent a major part of his life trying to meet a single goal before his thirteenth birthday. We have been trying to ensure he is equipped to survive his adolescence without being killed in a catastrophic encounter with police. He has been fortunate, and so far, safe. But recent events make it clear that we must act in some way to change the way things are or chances are, he may not be safe in the future.

When I realized that roughly 70% of people with disabilities encountered law enforcement more than once in their lifetimes, learned how many were victims of abuse and crime, and how many disabled males of color died in such encounters, I went to Annapolis to ask for an autism training bill for first responders. I later came to the realization that the training concept is inherently flawed and limited in its success.  For police officers, in particular, training them in awareness of autism and how someone autistic reacts to sirens, strobing lights, and people shouting at them wasn't the solution to the problem of keeping our son and his nonspeaking peers from accidentally being shot or wrongfully arrested in a police encounter.  Particularly for autistic and other neurodivergent males of color, police training in other states did not deter or reduce catastrophic encounters. Understand that  Freddie Gray was diagnosed with disabilities resulting from lifetime exposure to lead paint poisoning common to the low-income housing in West Baltimore. Freddie Gray was neurodivergent. His death is not counted as a Black disabled catastrophic encounter death but it should be.

 I have recently realized I must accept the idea that just about the only way to ensure our nonspeaking autistic son isn't harmed is instilling in him that he must avoid the police as much as possible.

The only legislative goal that will reduce catastrophic encounters with law enforcement for neurodivergent males in general and neurodivergent Black and brown males, in particular, is legislation aimed at not placing them in the path of police, to begin with.

I never thought I would have to consider how to teach my son to avoid police.  But there is no denying that recent events demonstrate race relations in this area of modern society have reversed 50 years, and we are now living in a dangerously polarized country. So here we are with our sweet son, standing at this intersection of racism, ableism, and disability. We are looking for breadcrumbs we can leave to aid him in preserving his own life  and the thought is frightening. So frightening that I can say the only thing that frightens me more is the rising number of autistic school children being arrested for school infractions and forced into the criminal justice system .

How do we teach him that the safest way to deal with law enforcement is to avoid engaging them at all?  Even if he needs help. Even if they seem kind and appear to understand he is unable to speak. Despite what he's been presented by well-meaning people who don't know what it means to be a Black man in America. Because if he meets a good cop one day, he may meet the one that hates him the next, and that could end his life. Too many others have died because they could not speak and were not provided with the means to respond when police ordered  them to do so.

The bullet-riddled windshield of Timothy Russell's car shows where some of the 137 bullets police fired at the car landed. (credit: Marvin Fong/The Plain Dealer)

One of my main goals for the remainder of my life is lowering the odds that my only son will die  by pushing our community to rethink what the role of law enforcement should be in our lives and to support efforts to remove law enforcement from inappropriate roles in the lives of autism families so we are able to  avoid police engagement as much as humanly possible. I am tired of watching our people die.

We are traumatized and tired of being helpless witnesses to the lives destroyed and lost in such encounters.  Freddie Gray,  Matthew Ajibade, Tario Anderson, Rekia Boyd, Tamir Rice, Aiyana Stanley-Jones. It is the list of the dead and injured that just keeps getting longer by the month while the criminal justice system keeps failing them and our entire race, first by allowing them to come to harm, second by allowing those who harmed them to not be made responsible for their actions, and third, by  blaming the victims in order to absolve the perpetrators. I continue to repeat that even someone who is suspected of committing a crime has the right to be safely arrested and tried by a jury of his peers. Police are never supposed to be executioners.

Knowing police officers who sully the uniform will not be held accountable for any wrongdoing, regardless of how much evidence of their guilt is apparent is soul destroying. We've been swallowing this bitter bill for my entire life. It is a spiritual struggle  to continue to defiantly declare one's right to exist and human right to humane treatment knowing this is true. Here is one of many examples of justice denied.

Cleveland police officer Michael Brelo mounted a car that 5 other police officers had riddled with bullets after "confusing the car backfiring with a gunshot"  and continued shooting down into the windshield of said car until the two already wounded victims, Malissa Williams and Timothy Russell, where dead. Officer Brelo was acquitted of any wrongdoing. 137 bullets were not, in a judge's opinion, excessive use of force.  If you believe that compliance of a traffic stop would have changed the conclusion of this encounter, then you are deceiving yourselves. If the moment the car backfired, the knee-jerk reaction was to shoot with impunity,  this act was driven by the presumption that Black suspects are dangerous criminals who should be shot. That is racial profiling. Which makes this a hate crime. This was never going to be an arrest. It was an execution.  Understand why we fear for our son. If you don't understand and don't act to help everyone fighting to change this deadly sequence of events, more will die.

This week the Supreme Court ruled in favor of San Francisco in the case of City and County of San Francisco v. Sheehan, overturning the decisions of all lower courts and placing all disabled people at risk. Specifically, they ruled that police who forcibly enter the premises and shoot a mental health patient have qualified immunity from litigation. This sets a legal precedent that weakens ADA protections despite the court's attempt to bypass the impact on ADA issue and enables further cases of excessive use of force when dealing with neurodivergent people in general and mental health consumers in particular.

I have already pointed out  here  that both Paul Childs and Stephon Watts were shot dead by police officers who had autism training, knew them, and had even helped them in the past. A police officer being familiar with your son's autism, knowing your son doesn't use verbal speech, being trained to approach and manage neurodivergent people doesn't protect them from being shot by those very police officers later on.

Jurors in the trial of the New Orleans police officers who shot multiple
victims including the Madison brothers inspecting Danziger bridge. Credit
Michael DeMocker NOLA Media

If I seem pessimistic about what is happening it is because even in cases where video evidence of wrongdoing supports witness accounts,  and even in cases where convictions are handed down, inevitably, as in the Supreme Court decision in San Francisco v Sheehan, justice eludes the victim. The conviction of the New Orleans police officers who shot among others 40-year-old autistic Ronald Madison and his brother Lonnie, who was trying to walk him over the bridge and out of New Orleans after Katrina, was overturned and they have now been granted a new trial. We all know these men will never see prison. Ronald Madison was a gentle person, loved by his family and neighbors. His brother refused to leave New Orleans without him and remained behind to help lead Ronald out after the storm because he didn't understand why he had to leave his home. It seems now that no one will ever answer for the innocent lives taken that day either.

If you ask my opinion of possible solutions to keep our autistic offspring of color safe by avoiding unnecessary engagement with law enforcement, I'll respond that I have a list. Here is part of that list

1. Retrain 911 operators to clearly distinguish the difference between a mental health crisis call and a law enforcement call. Do NOT use police officers as mental health support staff to transport MH consumers in crisis to help facilities. 

2. Train parents to properly request an ambulance and mental health crisis support; train loved ones and caregivers not to call the police unless a weapon is involved.

3. Remove the use of police and school resource officers (SROs) from the chain of school discipline and prohibit the profiling of disabled K12 students through files maintained by SROs, as they are neither qualified psychologists or psychiatrists.

4. Block school administration from calling the police to arrest students for school-related infractions and fine them if they do so. This holds them accountable for not providing staffing support for disabled students who require it.

5. Ensure that any incident involving the arrest of disabled students is automatically reviewed by that state's department of education's office of civil rights to assess the degree of violation of the student's civil rights and ensure the student is provided with properly trained classroom  support staff per IDEA .

6.  Establish grassroots mental health crisis support teams and  peer-run respite and crisis centers for MH consumers. This will increase respite for MH consumers and families, averting  crises where police might be called to homes or schools for interventions outside the scope of law enforcement                                                                                                                                                                                           .

I must continue my efforts to find a way to explain this all to my son and together we must ensure that even after we, his parents, are gone he knows how to survive as a nonspeaking  neurodivergent male of color in this increasingly corrosive world of hate.

God help us both.
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References:
Why Autism Training For Law Enforcement Does Not Work
http://theautismwars.blogspot.com/2014/08/why-autism-training-for-law-enforcement.html
What We Lose When Police Blame Victims For Their Own Deaths
 http://www.huffingtonpost.com/2015/05/15/police-shootings-victim-blaming_n_7284792.html
Blow to ADA of Supreme Court Decision in San Francisco v Sheehan
http://www.scotusblog.com/case-files/cases/city-and-county-of-san-francisco-california-v-sheehan/
Cleveland officer not guilty over deaths of two people shot at 137 times by police
https://www.theguardian.com/us-news/2015/may/23/cleveland-officer-not-guilty-shot-137-times-police
Reversal of Danziger Bridge convictions a 'bitter pill' for Hurricane Katrina survivors
http://www.nola.com/crime/index.ssf/2013/09/reversal_of_danziger_bridge_co.html