09 April 2012

Culture of Shame

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.


  1. I "came out" as Autistic in my own small community. I did this on March 25, with a newspaper article. I am never "going back." Not that I could. Life has been rather amazing since then. I have had comments, emails, and calls from people in my community, who are not at all related to the "disability community," thanking me for the article and hoping that my presence as an "out Autistic" will help other people. That is my hope, too. Disability does NOT need to be hidden, including "invisible disabilities." What does it say if someone who has an invisible (or supposedly invisible, since it's not really) disability is expected to keep it "under wraps" and pretend to not be disabled? It means that, yes, once again, disability is seen as shameful.

    1. I had a father who told me not to mention my brothers in an institution because I would be made fun of. I told when I was 10 years old because I saw kids like my brothers. One that I thought was mentally retarded was actually in his 40s turned out to be deaf and my other brother is an autistic savant that memorizes the phone book and knows everything about a car. They are both in group homes. My sons know about their uncles. I have a son who has Aspergers and dad has undiagnosed Aspergers and she wants me to keep it quiet and she blames his brother when he has an outburst.

    2. I can't tell you how wonderful things are now. Your settled into school and he's making excellent progress. He's got friends now... you has a little book with their telephone numbers in, and from time to time he rings them up. We can go out as a family. you can coping it


    I kind of want a chance to bring my niece to some fo the events where we gather because I want. . . I want for her to grow up around kids with disabilities so that she has a chance to see us as normal when she gets older. I don't want her to whisper to her friends in 10, 15 years about her disabled aunt. I don't want her to be part of this perpetuation of seeing us as shameful.

    and, should she eventually end up with a disability herself, I don't want her to avoid identifying it or with it Like I did and like you did. As far as we know, she's abled. but. . . well, being able bodied/minded is a temporary state, as some say.

  3. I've been coming out as autistic/asperger's on facebook over the last several weeks, and disappointed at the lack of reaction, either supportive or not. No comments on the articles i post, no questions to me, complete silence. i know these people are probably not being hateful, but are uncomfortable (canadians!) around things they do not understand, so what else is new?
    i HAD hoped for a bit more in response, but thankful that i have a supportive partner, who has also been posting and trying to strike up a dialogue with his friends and family.

  4. I just discovered your blog.It's one of the better ones I have read in a while.I also learned about TASH through your blog,and am going to try to start a chapter in New Mexico.

    One thing I do not like about many people with Asperger's or those who are "higher functioning",is that they do not always recognize those with a more severe diagnosis.I was,or am without treatment,one of those with a more severe form of autism.Someone whose ability to type sentences on a computer,does not correlate with their ability to function in the real world.Serious developmental delays,multiple regressions,problems with hygiene,eloping,head banging,the whole nine yards.I am also one of those autistcs with a lot of serious medical issues no one could figure out.A few months ago,I learned I have one of those "new" types of cerebral folate deficiency,and started on high dose leucovorin.This in middle age,decades after my autism diagnosis.Even with the the tremendous improvements the leucovorin gives me,it's obvious I am still autistic.I don't need to "come out".

    I have only recently figured out just how rare someone like me is,even among autistics as a whole.It's a very lonely place to be.

    1. It looks like the closest chapter of TASH is in Arizona, one state over from New Mexico. There doesn't seem to be an ASAN chapter nearby either -- you should look into ASAN as well.

    2. Hi Roger - My son Matthew is 12 and has a diagnosis of autism - he is just starting on Leucovorin. What positive things have you seen? I think my son is very lonely also, and this breaks my heart!

  5. This article is important. I am doing a paper using your blog and one other. I think this article and your blog shows a lot of great information for what I need. It is a culture of shame and why probably many agencies that have group homes and day hab programs and even community programs that say they teach social skills and adapting to society, really are terrible places right now for disabled people to go to. May be many of these community programs, residences, and day programs for people who go to them need to know by looking at this message you sending. However, many of these people do not even do not have high school diplomas and have not gone to college due to this. I would have to say there are more disabled people out there without high school diplomas than with while many of these people also do not have the education to be literate and even learned to use AAC in elementary school that could benefit them. The people who have seemed to have been lucky enough from good parenting and/or coming from wealthy family background. While many of these disabled children and adults thereafter, have been bullied, censored, stared at, and humiliated for life. Because of this, many of these disabled people become adults with internalized ableism.

