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.