AutisticWhileBlack: At The Intersection of Deaf Culture and Nonspeaking Autism

 

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

When Mustafa was three years old, he began to miss speech milestones. At first, when I spoke to him in English, he responded in English. When one of us spoke to him in Turkish, he responded in Turkish. When a kid at the playground, or I, spoke to him in Spanish, he responded. But one day, when he was spoken to, he ceased responding verbally.

After we got his diagnosis, his sister began teaching him baby sign language. Simple things, to help him communicate his needs. About the time we were struggling to learn these signs with him, both his father and I were working and Musti's sister was going to college. So baby signs began to lag.

One Friday night, we were all exhausted and decided to order a pizza. When the pizza arrived Mustafa rushed to the door and peeked up at the pretty delivery person, a young woman who was working her way through college. Without speaking she looked at him and began signing at him. Mustafa signed and jumped excitedly in response. It took us a moment to realize our delivery person was deaf. She was reading our son's baby signs and body language and totally understood him.

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

This kind of interaction happened whenever we met deaf people until he entered Kindergarten. Whenever we were in a public space, deaf people simply presumed he was deaf and would immediately sign back, so joyfully and rapidly that it took us moments of standing before them confused before they realized that we didn't know enough sign language to communicate at that pace, and neither did Mustafa. 

They didn't just presume he signed. Those who responded so quickly were mostly African American deaf community members. They observed his body language as well as his attempts to sign. We, verbal speech-centric folks, have somehow forgotten how critical gestural language is to communication. But deaf community members have not.

What does a family do when the school system refuses to implement communication as an IEP priority, teachers and staff who sign refuse to respond to their son's efforts to sign his needs, and that family encounters lateral ableism that bars them and their nonspeaking son from learning sign language? Here's one example of what happened to us. His first thanksgiving event at his school resulted in a series of holiday photos posted to the school's webpage which inadvertently showed our son trying to sign to his teacher. The parent who took the photos, upon realizing that they showed our son signing to the teacher and the teacher who was trained in sign language deliberately turning her back on him, warned the school, who took down the photos before I could capture them and bring them as proof to the upcoming IEP meeting that our son was capable of learning sign language. That parent's reward was the school providing her child with a much wished-for item on the child's IEP. Because somehow it was her belief that stepping on my son's right to communicate was necessary to help her child.

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

I tried using programs and online resources. It is difficult going and I find that nuance is lost, meaning one might believe they are signing one thing when they are actually signing something else entirely. Then there is the cultural specificity of Black sign language. For our son, the sign language he learns needs to make him a part of his community. Like African American Vernacular English(AAVE), Black sign language should include him. But those who might teach him are not put in a position to be paid for their labor. In our former school district, where the non-speaking student body is disproportionately Black and Brown, no African American sign language teachers were employed. Why does this disparity exist?

In 2014, I watched a documentary of a class in rural Uganda being taught sign language. The ages of the students ranged from 9 to 80. They were taught by a teacher who was given intense sign language training in order to return him to rural areas and teach people of all ages born deaf or deaf as a result of illness how to communicate through sign language. 

We are the supposedly developed nation, yet we do not do as much for our own nonspeaking adults and children. Despite the challenges of the Ugandan program and the ableism displayed in the documentary, deaf rights activists are fighting to give their community the gift of communication. It is that important. 

Meanwhile, Mu, my husband, and I are back to the task of trying to find a way we can all learn to sign properly in order to help our son communicate beyond baby-sign. There is a universal sign language. Perhaps we will try that. But the reality of our sign language story is that sign language learning should be free and open to everyone who is nonspeaking, in the same way, it is being offered to the deaf rural citizens of Uganda. The basic sign language lessons featured in the documentary above were life-changing for the people who walked miles to get them. The lessons lasted three months. In three months, these people went from isolation to community. The idea that people with ID/DD are not worthy or able to learn sign language is a crock. Lateral ableism as a barrier to access to anything that might help another disabled human is intolerable. Sign language is affordable, can be learned at any age, and can be life-changing.  

So why is something so affordable, basic, and scalable not part of language support for our nonspeaking loved ones and their families? We are such a technology-centric society that we tend to forget that sign language is a communication method that can be gained by all nonspeaking autistics who don't have OT challenges regardless of class and income level. When we say communication first, that needs to mean that all available methods of communication should be considered for AAC.

AutisticWhileBlack #SaveDarius II The MTA, In Black And White

 

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

“But all our phrasing—race relations, racial chasm, racial justice, racial profiling, white privilege, even white supremacy—serves to obscure that racism is a visceral experience, that it dislodges brains, blocks airways, rips muscle, extracts organs, cracks bones, breaks teeth. You must never look away from this. You must always remember that the sociology, the history, the economics, the graphs, the charts, the regressions all land, with great violence, upon the body.”― Ta-Nehisi Coates, Between the World and Me

Darius McCollum memorized the MTA map by age eight, spent his entire adult life volunteering for the MTA, and was criminalized and jailed for it. He was given a diagnosis of Asperger's by a prison doctor at age 40. He has all the characteristics of a prodigious savant. But we will never know, because, at age 53, he has been given the final blow to the crime of being autistic while black, damned to an institution where he, who is not violent, does not belong.

I would like to live in the dream that had Darius McCollum been born in say, 1992, he might have been diagnosed with Asperger's syndrome while still in grade school. Perhaps, if he hadn't lived years before people acknowledged or accepted that Black children could be autistic too he would have made the evening news for volunteering at the MTA while still a young autistic child. Perhaps he would have been rewarded for his intense interest in the transit system and earned a training internship with accommodation for his disability. Perhaps he might have transitioned into a job as a disabled adult. Perhaps when the MTA rejected his repeated applications for work, he might have found legal representation and sued for discrimination based on disability. Maybe, in a parallel universe, Darius McCollum is living a happy life doing the only thing he has ever wanted to do, work as an MTA employee.

Perhaps he would not have felt the urge to drive a bus six stops on its route, flawlessly picking up and dropping off passengers as any driver would do, at age 15.

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

Darius has the world's thirst for entertainment and the media's lust for ratings against him. News stories about Darius are less like human-interest reporting and more like circus creations at a world's fair where he's the oddity du jour and his suffering saga is a marriage of stereotypes, Jim Crow minstrel shows of a disabled black body. How can we expect justice when the structural racism of government overreaction to any nonconforming Black male body stands like a mountain in every Neili, Arnaldo, and Darius' path?

At age 53,  the doom of this verdict is the final hammer blow to this singular mind. It is too much like the way the widow of Blind Tom Wiggins' slaveholder tricked his mother into signing over custody of him with the promise of freeing him then used the courts to declare him mentally incompetent simply to enrich herself. Tom Wiggins is known as the last slave in America because of this abuse.

I haven't studied all the publicly available charges piled up against him. But from what I have read, they are marked by McCollum following proper procedure as he did while volunteering. He gets "caught" because this is not behavior he has the impulse control to eradicate on his own. He has been labeled a thief and given a devastating punishment for compulsive behavior. Meanwhile, he has become the subject of a movie, and others will profit from his suffering.

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

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

So let's look at someone else from New York, with the same love of the New York transit system, and how his life turned out.  Jonathan Mahler's The New York Times Magazine essay, The Case for the Subway, includes a brief history of a man named Max Diamond. He lived in Park Slope, not Jamaica, Queens. Max displayed the same hyper interest in trains and the subway system. Like Darius, Max had a prodigious knowledge of detailed information related to trains, subways, track layouts, signals, and switches. While Darius was trained by employees to such a degree that he could cover their shifts, Max had the resources to start his own YouTube channel under the handle Dj Hammers at age 14. 

Max became a celebrity and gathered a following of fellow subway lovers.  Per Jonathan Mahler: "In 2016, Diamond was hired by the M.T.A. as a paid intern, and at 21, he now crunches numbers in its performance-analysis unit while he works toward an economics degree at the City College of New York. " Darius McCollum repeatedly applied for employment with the M.T.A. but was repeatedly rejected. The M.T.A. staff who trained him and were complicit in his impersonating staff by teaching him to do their jobs and cover their shifts have not been held accountable for leading him into his present predicament. Darius' family had set up a job for him driving a bus route in the Carolinas, but because Darius had a parole hearing in NYC, he fell back into seeking out his 'friends' in the M.T.A. and back to the pattern of indulging in his singular focus, the city's transit system.  

Max Diamond filming and sharing details about the NY transit system was never considered a security risk. Darius McCollum, trained by M.T.A. employees and knowledgeable enough to correct issues when they occurred in the same transit system was considered dangerous. Max Diamond is now a conductor for the New York City Transit system. Darius McCollum has been rewarded for the same interest and hyperfocus on the same transit system by a lifetime in prison. 

Within the autism conversation, the violence visited upon the Black autistic body is never felt as we who are African American, feel it. Yet  we have been denied the platforms and resources needed  to counter the harm done to our people. The number of late-diagnosed Black autistics in the carceral system is a statement of the difference between being disabled and Black, or white. The question is, is our community going to act to solve the inherent injustice of structural ableist racism and how it impacts autistics like Darius? 

This is the second time I've asked that our community act to build a bridge to a better life for Darius and others who should never have been behind bars in the first place. 

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

Want to help?

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