Tag Archives: self-identification
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
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I’ve been reading about the Spoon Theory and kinda going, yeah, that doesn’t apply to me. (Basically, we all have a number of spoons that represent what we can do that day. Healthy, temporarily able bodied people (age will get us all!! Run!!) have an unlimited amount. Those not so able-bodied do not.)
Thinking about the Spoon Theory and applying it to my life is scary because dammit, if I write down that it hurts, then it really happened and it just won’t go away. If I don’t classify it, it’s not there. Denial is awesome unless WILL YOU STOP STABBING ME. See?
But I do use it, I realized today.
It brings up some interesting thoughts for me about “what actually is disability?” That’s medical vs social model stuff, but its not just that. Its about the labels we as people with impairments use to define and describe ourselves. What boxes we put ourselves in and how easily or not we communicate with those in the other boxes of disability.
You know you a monster when almost all the depictions of your condition in the media show you as either a joke or a jerkass. It gets to you. You begin to wonder if those you call your friends see you the same way. Are they keeping you around for the crazy antics? Do they like the real you, who ever that may be?
I had some really positive experiences today with some disability activism that I would really like to share. The first two were at work and the third at an after-work conference for language development in the Middle Swan area.
In the news:
Student files suit against U. [Princeton]
Metcalf-Leggette’s complaint asserted that she has four learning disabilities, which were diagnosed in 2003: attention deficit hyperactivity disorder (ADHD), mixed-receptive-expressive language disorder, disorder of written expression and developmental coordination disorder. The conditions, according to the complaint, hinder her ability to focus, process information and communicate in writing.
The suit comes after a series of meetings with school officials during which Metcalf-Leggette sought accommodation for her disabilities. The University currently accommodates Metcalf-Leggette’s disabilities by offering her a “reduced distraction testing environment,” a limit of one exam per day and a 10-minute break each hour, the law journal reported.
Definitions of disability affect people’s self-identity. Recognizing yourself as disabled and identifying with other people who are disabled and learning about their experiences can all contribute to understanding and interpreting your own experiences, and to knowing that you are not alone with problems you may have believed were unique to you. But being identified as disabled also carried a significant stigma in most societies and usually forces the person so identified to deal with stereotypes and unrealistic attitudes and expectations that are projected on to her/him as a member of this stigmatized group.
– Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge. 1996. pg 12.
A bit shorter today – Wednesdays are always busy for me!
In the blogs:
# all of us are learning about our own disabilities and each others
# hard to figure out who our allies are. in nonprofit industrial complex, when we make a decision that isn’t popular with allies (like using the word “disabled” as a political word of power in our name), we don’t just lose support, ageist and ableist tactics are used to try and take our power
# this is honestly first time a lot of us have been asked: what do you want? what do you see for yourself & yr community?
In the news:
And here comes the dirty little secret of the so-called juvenile justice system. If you have a seriously mentally ill kid, and you can’t afford treatment, you can have your kid hauled before a judge. And if the judge is particularly empathetic, he or she has the power to get services for your kid.
As long as you’re willing to give up custody of your child to the state of Arizona.
[I find this especially troubling in light of the Hyde case here in Nova Scotia.]
Dont Write Me Off [UK]:
There are hundreds of thousands of adults with autism in the UK, all of whom have the right to lead a dignified and fulfilling life. Sadly, the majority of people with autism are not getting the support they need to find a job, and many more cannot access the benefits they need to live on.
The research that we carried out among adults with autism showed some worrying statistics. Among the people we contacted, we found that:
– one third are currently without work or benefits
– over half have spent some time without work or benefits, some for as long as 10 years
– just 15% have a full-time job
– but 79% of those on Incapacity Benefit told us that they want to work.
Through this campaign The National Autistic Society is calling on the Government to make the system fair for adults with autism, so that it takes their needs into account at every step.
“Expectation + Opportunity = Full Participation” is the 2009 theme for National Disability Employment Awareness Month (NDEAM). Sponsored by the Office of Disability Employment Policy, NDEAM highlights the contribution of American workers with disabilities as well as increases awareness of their challenges.