Rest at pale evening…
A tall slim tree…
Night coming tenderly
Black like me. ~by Langston Hughes
The year I was born, John Howard Griffin, a journalist and civil rights movement ally, published a book that told the story of the journey he took in order to understand Black people. He had studied, sympathized with their struggles for equality, but he did not understand them. What he did was nothing short of shocking. He made an agreement with Sepia Magazine, who funded Mr. Griffin’s journey in exchange for publishing a series of articles on what happened to the white native of Dallas, Texas during this adventure. Then, he went to a doctor and had a series of treatments to make himself Black.
He spent the next year living and travelling as a Black man in the segregated South. When the journey was over, he finally knew the experience of being Black in a segregated world. This turning point defined the rest of Mr. Griffin’s life. He became a true ally, because he understood by experience every aspect of Racism, Classism, Poverty, and myriad other aspects of being Black including something he had failed to notice before. He realized the very way white people spoke to one another was different than the language used to address Blacks. Communication was structured to remind Blacks that they were less than whites.
Griffin’s one advantage was that he could leave the oppressive world of being Black in segregated and racist America at will. Those he left behind could not leave that world. The problem of experiencing discrimination is compounded when a parent is making an attempt to be an ally to her neurodiverse child, precisely because unless that parent is also neurodiverse, they cannot quite understand the endemic nature of ableism, and how that impacts the quality of their children’s lives. They may be unaware that they are perpetuating that ableism by using the language constructs of a society that endemically discriminates against anyone visibly different. And because Autism is a spectrum disorder, even parents who may discover later in life that they are actually neurodiverse carry a lifetime of toxic negative stereotypes about brains wired differently, and the cognitive dissonance created when said parent discovers the truth of her own neurology is painful to watch. When we are in crisis, we fall back on what we know. We don’t see that as an opportunity to open a new world of thought. Parents can leave the world of disability and ableism. Their neurodiverse children cannot. And children grow up.
In trying to stand with our son, I look to where my own differences made me vulnerable to greater discrimination. I know what racism is by experience; I know what sexism is as well. I know what discrimination is based on religion, national origin. What I didn’t know about was discrimination based on a person’s diverse neurology and how this compounded my son vulnerability to maltreatment when combined with his race, his father’s immigrant background, my race and origins, and anything else that was visibly different about him.
Correspondence from our son’s school revealed plainly where discrimination was taking place. A parent accused our son of attacking her child and other children on the bus because “his father was from a brown man from India” (my husband is of Turkish descent and clearly White). Both the school and the transportation office of our school district informed the parent in question that our son could not have attacked any child because he had always been placed in a safety harness on the bus and was actually the victim of an assault on the bus by another student. Request forms for reduced price lunches were repeatedly sent home with our son because his teaching team insisted that, since I was dark skinned I must be on welfare. My surname was incorrect in letters addressed to us because it was assumed that as I was Black, I was not married to my son’s father, therefore my last name must be different. When our son returned to school after recovering from illness, I wrote in his communication book that I was sorry he missed the annual trip to the pumpkin patch. His teacher responded that it didn’t matter because he was a nonverbal autistic, and nonverbal kids don’t ever know what’s going on anyway because they are so (insert pejorative term for intellectually disabled here). The very place our son sat on the autism spectrum made him a victim of what we later learned wasableism.
I cannot go to a doctor and ask her to give me treatments to make me appear more nonverbally autistic. How then, could I understand ableism better? After homeschooling my son for about two years, I believed I had found the answer. To understand what my son was up against I needed to get as close to doing what John Howard Griffin had done as I could. I began writing autistic adults around the world who either used Augmentative and Alternative Communication (AAC) in the form of speech devices to speak, or who did not use verbal speech until they were much older. People who still knew what it was like to be my son. I began reading their books and blog posts. I asked them questions. I was amazed when they answered and gave me advice on how to help my son self regulate.
Still, there was something missing. His race, his national origins, the rest of who he was and how that influenced his life was not being addressed. One of the only other people in the world who might come remotely close to understanding how our son’s differences intersect to impact his life experiences is his sister. His sister is multiracial, multicultural, and only unlike her brother in that she is not a male on the autism spectrum. Somehow I had to listen to his communications to me, although he did not have a verbal speech, hear his sister as she explained the experience of being the multiracial daughter of mixed race marriage, and listen to nonspeaking autistic disability rights advocates communicating the experience of being nonspeaking in a world of verbal speech.
It is not an ideal solution to understanding ableism in combination with racism and other bigotry. I cannot be my son. I can’t travel the world for a year as a nonspeaking neurodiverse person. But I am doing the next best thing. I am learning from everyone who can teach me what happens when multiple differences meet at that intersection of minorities that is our son. I am able to improve the quality of his life by that understanding, allowing him to participate in his life as much as he is able. He is gaining confidence and losing fear. I hope that hand in hand, my son and I can arrive at that crossroads and meet the challenges of overcoming each aspect of discrimination he encounters. He continues to teach me to express joy and laughter without restraint, to be as he is. Unfettered.
About the Author, Kerima Çevik.