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Monday, April 24, 2017
Interview with Star, from New Mexico, who works tirelessly to make a difference in the lives of Autistic people, working on collaborative projects with other Autistics.
I'm Star from New Mexico, age 48. I volunteer for a non-profit - Divergent Labs, which is autistic run. I also have a regular job as a software developer. I live with a partner, and a bunch of fruit trees and animals.
What is your life like as an Autistic person?
Life has changed a lot and continues to change; I don't seem to ever find myself and settle down. When I was a child I didn't feel like I was even a person the way other people were, but now I'm finally getting there. I've spent a lot of time trying to advance myself or heal myself or achieve various goals, but it never works according to plan. I first met other autistic people in my 30s and that changed everything. After relating to them I think I gradually learned to relate to typical adults too. I relate to college-aged people now and recently got my first "real job", so I feel like I'm just starting out in life.
What is the most joyful, fun, exciting thing about being Autistic?
The most exciting thing is the automatic, sometimes instant depth of connection I can find with other autistic people, which is very similar to the way I connect easily with children. Also learning things I'm interested in comes easily and I get pretty obsessed about those things.
What is the most difficult about being Autistic, for you?
The most difficult things have been the loneliness and chronic stress that I've felt most of my life. I'm not accepted into groups of people as an equal, or often not at all. So even though I have interests and skills and the motivation to be with people and work with them, I usually can't find a way to be part of anything. All the self-help and well-meaning help out there hasn't been relevant because no one seemed to understand me and they pressured me to present and be someone totally different than who I was. So I mostly lived in a protective shell afraid to be naturally me.
How has the Autism Acceptance Day/Month effort over the past seven years affected you personally? If you were not aware of it until recently, what meaning does Autism Acceptance Day/Month have to you now?
I always feel a huge relief when I know that other autistic people are doing something collaborative. I know that mostly they will achieve a depth and truth that other efforts cannot reach, and that they will accurately represent me.
What does “moving beyond awareness” mean to you?
"Awareness" in the autism world seems to be nothing more than a means for the industry to identify a larger customer base. It usually implies "correcting" autistic behavior, which is usually abusive. So to me, moving beyond awareness is replacing an objectifying, spiritually empty view with one that recognizes that people are different and that having the variety is natural and lovely.
What is one thing about acceptance that would make a difference in the world?
If the wider autism community was able to relax and accept the wonderful variety of people, with our different strengths and different needs, we'd be able to change the system of public and private funding that is a big part of many of our lives. In particular we would move away from the idea of treatment, and away from insurance as the model, and go towards a system of supports and accommodations, with accessibility as the core idea that drives those decisions. The public conversation today is still very dehumanizing. As someone who has a job and can do a lot independently, people assume I don't need anything. But really I've needed support and accommodations too and when I haven't found it, I've lived a bleak life with few meaningful connections. I think widespread acceptance would also stop that incessant grading of people as more or less autistic as if we fit neatly on a continuum.
In a more general way, achieving a consensus of acceptance about autism will also help us accept other disabilities, and also will help us all accept each other in all the ways beyond disability where not everyone conforms, or where we're pushing beyond stereotypes - such as language, religious practice, gender variation, alternative living situations, and creative occupations. Acceptance of non-conformity in the broadest sense is an antidote to fascism and is part of the solution to the world's most pressing problems, so it's far wider reaching than easing any one person's struggles.