Growing up, my understanding of "disability" was limited to signs for "handicapped parking" with a white stick figure in a wheelchair and "special needs" children, who were always looked at from afar, and who would be described in low, quiet tones just in case they heard themselves being described.
I was not diagnosed until I was thirteen.
The word disability was not a word I associated with myself for years after receiving my diagnosis. It's not a word with a very positive history or even a well-known one.
Our children learn about Martin Luther King Jr. and Mahatma Gandhi and Susan B. Anthony. But who reads biographies of Ed Roberts or Judy Heumann? Who hears about Deaf President Now or the passage of key disability rights legislation? We know "one nation with justice and liberty for all," "these truths are self-evident, that all men are created equal and endowed by their creator with certain inalienable rights, and that among these are life, liberty, and the pursuit of happiness," and "I have a dream."
Why is "disability is a natural part of the human experience" missing?
Where did those "special needs" children go?
Why was I invisible?
Right now, I am typing this post on my phone from the third row of a Megabus, sitting next to a student at Howard University in a denim jacket with a brown leather bag. We're two hours behind schedule. I-95 has been more or less a parking lot for several hours.
Earlier, the woman in front of me shared that she works with Autistic high school students in a mainstream program. We had a long conversation about the false dichotomy of functional labels and tools to support younger Autistics.
I don't think anyone else on the bus heard.
Outside a fairly insular community rife with dividing lines and explosive tempers, "autism" is something relegated to "special schools," tacky "awareness" campaigns in April, and "very special episodes" of popular TV shows. I don't know the young woman sitting next to me, but there's a decent-sized chance that she knows verry little about the lives of Autistic people, much less the fight for a civil rights model of autism. She would probably be surprised if I told her that I am Autistic.
Stereotypes and misconceptions about Autistic people are by no means gone. I have been asked if I am a savant, and I have always replied, "No," because I'm not. We are not homogeneously "children with special needs in the corner," whose very existence must be spoken of in such cautious and overly dramatic tones. Our existence deserves better than pity and empty stereotypes.
Sometimes I wonder where all of the disabled children from my childhood have gone. Their existence was hardly acknowledged, and I escaped that ignominious experience only because my disability has always been largely invisible. Where are they now?
I met a young woman with multiple disabilities, most likely learning and developmental disabilities, who screamed at me in rage, with terror in her eyes, as she shouted, "You can't define yourself by your disability! You can't!" There was such desperation in her voice.
What have we told our children about disability?
After I was diagnosed, my eighth grade year was mostly over. My mother told me not to tell my classmates about my diagnosis because it would only be another excuse to make fun of me. She encouraged me not to bring books with autism or Asperger's in the title to school with me.
I listened to her.
Autism, Asperger's, disability -- these became unspeakable words. Not To Be Uttered.
I wonder whether talking about disability openly and frankly would have been the better decision, both for my classmates and myself. Students are frequently required to attend diversity education programs that expose them to a variety of cultures. Why should disability culture be different?
We are not acknowledged in mainstream society as having legitimate culture and community. Many people grow up and never meet any people with disabilities beyond perfunctory or parallel encounters devoid of meaningful engagement, never mind lasting relationships. I knew two Blind people growing up, a handful of hearing-impaired people, and the myriad of "special needs children" who in retrospect were all either learning disabled or Autistic.
The disabled represent the single largest minority group in America. As many as one-third of all Americans have a disability of some kind, either from birth of acquired, visible or invisible, physical or neurological.
Why isn't our history included in textbooks alongside women's history, African American history, and Jewish history? Where are our pioneers, our triumphs, our struggles? Why are our only acceptable public roles either those of the well-behaved token or the inspirational supercrip?
Why are we still largely invisible?
We have perpetuated a culture of fear, shame, and pity around disability. How else can you explain the way adults will pull small children aside and stage whisper, "He has special needs," while staring at another child, and expect this to mean anything other than, "He is different from you and you really don't want to play with him." Our history has been erased before it was written.
Typos and misquotes are because this was written entirely from my phone on a small keypad with a small screen while on a bus.