A Post From The Joy of Autism, July 2008.
Diversity training has begun on the popular airwaves. CNN’s Black in America, with Soledad O’Brian, aims to express the many sides of living as a black or bi-racial person in North America. Watching it, I see a similar theme that may be helpful for parents with autistic children. It is the comparison of being black and having a white child or vica versa. It is the experience of a parent without any disability or experience of it, who has a disabled child. If our children are “not like us,” then who are they? To which community do they belong?
I believe it is one of the major sources of tension out there – why the “recovery” movement is so strong, why acceptance is so difficult. While not accepting the status quo is great in terms of pushing for acceptance and inclusion of disabled individuals, it is not that helpful when the movement takes a turn to fundamentally change the individual’s genetic make-up — to say, in essence, there’s something ill, or wrong with you. You are sick and we have to fix and heal you. If we don’t, your life will be hard. We’ve heard it many times — there is a strong movement against calling disabled people ill. The medical model doesn’t fit the human model. While medicine can help us feel better, it can’t take human difference away. If it tries, it can’t be successful. I’m one who believes that any “progress” in science will see its regression too.
In other words, not only will there be ethical problems, but with every seeming “advance,” there is also an antithesis. With the advent of our lives being extended, for instance, we have more disability — this is not to say that disability is wrong, however, with the extension of our lives, it is natural. If you are religious or believe in God, one might say that only God knows why he creates what he does. If you are secular, you might believe that there is meaning, value and importance in the grand scheme of things, and that is still, perhaps like God, ineffable.
I believe that some of my family members have strong autistic traits. My father did not speak until he was six years old, for instance. He became an engineer and has exceptional eye for technological detail to the point of losing others when he talks about it. It is his obsession (sorry dad, but I think you are a brilliant). I crave alone-time and privacy and am much less social than my husband to the point that I think others may not understand me (I prefer to communicate more in writing and am not as reserved when I do so). As a child I used to play alone for hours and would twirl until I passed out (Adam does not twirl). I found idle chatter highly uncomfortable yet as I’ve become older, I’ve become better at persevering small talk. Like Adam, my obsessions have been words and letters. I invest in art with words in them or art that looks like it has been written upon. I am a big fan of Cy Twombly. I collect scrabble letters and typewriters.
Because of Adam, my interests and habits have become more obvious to me. So, I guess Adam, who is autistic in a non autistic family, really does belong. We share the same physical features. We even share personality attributes. Yet, he has a label and I don’t (which may suggest the nature of labeling and why so many people cringe with labels — they can help AND hinder). He is “autistic,” while the rest of his family “is not autistic.” He has a community that organizes conferences for and by autistic people. I cherish that for him.
Maybe in a way, I even envy him. For the communities who must really stand and stay together become the strongest. I do not fully belong save for being his strongest ally. Some people get offended when they hear “autistic person.” Some prefer “I am a person with autism.” Without re-hashing this debate too much about person-first language, I don’t think it matters how we put it. It’s the manner in which we put it – the tone of our voice, and the way that that tone reflects how we feel about people, the words we put alongside autism. It matters that we all recognize that we are all the same despite our differences. We are all equal, even though our contribution and output may manifest differently. We all have the same rights, even if one person is less independent than another. It doesn’t all fit into a nice convenient box, that may be true.
As such, I like the comment made on the CNN blog about pride. Autistic pride, gay pride, we all know why those movements have had to spring into action: because there has been too much medicalization and stigma of both, and a need for society to become familiar with the paradox of difference and same-ness.
There is no “other.” There are only variations of ourselves. So I found the hundreds of comments on this series really interesting in the context of diversity, pride, but most of all this sense of which culture do we become loyal to or do we identify with? In my view, why can’t we belong to more than one?:
My daughter Grace and I watched the premier of CNN’s
groundbreaking “Black in America.” I thought we would have
lively discussions around many of the themes concerning black
women in this country. However, when she saw the segments on
interracial marriage and the children of those relationships, she
had a visceral response.
I saw an activist being born.
Grace seemed ready to adapt James Brown’s black anthem to
her cause: “Say it loud, I’m blended and proud!” I saw my
daughter stand up for the equality of blended people like herself
in all her olive-complexioned, big curly afro-like glory. She went
immediately to the computer with dignity, passion and
everything but a fist in the air…
As a parent of biracial children, it feels really good to read such
an article. That’s exactly the way I want my children to be about
their heritage: proud of both!
It is definitely unfortunate that you have to make a choice
between different races. There are still a lot of administrative
papers which do not have an “Other” section. Very confusing for
the parents and children.
But after all, aren’t we all from Africa anyway?
I am proud of having a child with autism/an autistic child. I believe that being autistic forms an important part of his experience with the world around him — both from a sensory point of view as well as how he will be treated and regarded by others. He will grow a natural sensitivity to this and his ideas will be shaped by it. It is why I say that he is an autistic person. Jenny McCarthy, because she thinks autism is a disease, and is afraid of it like cancer, is appalled a the notion of calling a child autistic. I see her view as a denial of our children’s right to be who they are and accepted for that. I personally think it is wrong for a parent to think disability, or autism, is a bad word. I think the disability community, much like race, do not identify with the cancer comparison in the sense of being ill, however, it is interesting to me, after being through a
stage one cancer experience myself this year, that people with cancer will identify themselves as being “cancer survivors” in order to explain who they are by virtue of their experience with
cancer. Going through cancer, as my mother and I can attest, indeed shifts something within you. The experience forms who you are. And I don’t see the problem with that.
I want Adam to be proud of himself as he is. He is part of a family who shares very many of his traits –inward and outward — yet he also appears different in the way he expresses himself and moves. Autism may be similar to the experience of being bi-racial or “blended,” if you will. Autism is a part of all of us.
Yesterday, Adam sat through the entire movie, E.T. Watching with him made me either believe Steven Spielberg is really autistic, or that the man really gets it. Usually, Adam can get into 30 minutes of a movie, and he’s off doing something else. Yesterday, he would watch, then giggle, then roll around the couch, then snuggle with me — enough antics to make many adults think that he couldn’t have been really paying attention, but I could tell he was. There were also moments when he would repeat the lines. He would watch the screen and be still.
Therapists tend to use the same stories over and over again to assess an autistic person’s comprehension of a story. And yet, when Adam sees something new, or more complex than people
thinks he will understand, he really gets the gist of things. This typed conversation I had with him yesterday illustrates this:
Me: “Adam, I really enjoyed watching the movie with you today.
Adam: i like toad.
Me: what was the alien’s name?
Me: E.T. had lots of feeling and a very big heart. E.T. had lots of
love for others.
Adam: Et was the guy yes
Me: E.T. could hardly speak. In a way, E.T. is like you. He
understands but finds it hard to talk.
Adam: E.T. was question
Me: Do you think you and E.T. are similar?
Adam: E.T. was the want
Me: What is want?
Adam: E.T. was the want to speak.
Me: E.T. wanted to be able to communicate. What else did E.T.
Adam: et wanted to go away.
Me: Where did he want to go?
Me: yes, we all want to be home and be with people who are like
Adam: i people.”
Indeed he is people, a person. Adam is Adam and he is all of us.
POSTED BY ESTEE KLAR-WOLFOND AT 7/27/2008 PM
SATURDAY , JULY 26, 2008.