Saturday, April 16, 2011

Advocacy as a Mitzvah

"Where is my light? My light is in me.
Where is my hope? My hope is in me.
Where is my strength? My strength is in me – and in you"
- Rabbi Sherwin Wine
Before I get rolling on this, here's a tidbit from Wikipedia to help you stay on the same page as me:
The secondary meaning of Mitzvah refers to a moral deed performed as a religious duty. As such, the term mitzvah has also come to express an act of human kindness. The tertiary meaning of Mitzvah also refers to the fulfillment of a mitzvah.
Alright. Good. We got that out of the way. Goyishe readers, you're welcome.

What I am attempting to convey is what my work in autistic self-advocacy means to me as a Jewish woman. I'm not the first Jewish woman to have to come to terms with her autism, in fact, a cursory glance at the greats of autistic self-advocacy is filled with a great treasury of strong Jewish women with autism. I hope they count me as a peer, though I do not compare to them in terms of brilliance, strength, and perseverance. But, my autism and my Jewish background and Jewish outlook have influenced the way I approach my life, and that includes the way I approach my disability, and how to best defend myself when faced with opposition because of my autism. So, here's my story.
I'm not religious, really. If you were to dissect me post-mortem, my ghost would be utterly unsurprised if there were no spiritual bones found. But I maintain a strong grip on my identity as a Jew, even though I did not grow up in a religious household. As suspected fellow autie Albert Einstein put it:
"The pursuit of knowledge for its own sake, an almost fanatical love of justice and the desire for personal independence -- these are the features of the Jewish tradition which make me thank my stars that I belong to it.
That sums up just about everything I love about it, thank you, Dr. Einstein.
It is also what brings me to the title of this post. I explained already what a Mitzvah is, in this context, but how does that relate to autistic advocacy? Well, simply put, part of what I do and why I do it relates to the past, but most of it is firmly planted in the future. I came to be an advocate and an activist because of my past, because I was placed, against my will, amongst the damned. Many others were damned along with me, condemned to a life that was less fulfilling and lacking in encouragement towards goals and dreams, simply because they were like me, neurological rebels with various disabilities. Some managed to stoke up enough of a fire in the belly to escape the confines set down for them against their will. Others, for various reasons, couldn't escape.
What I do now is not only for those of us who escaped, it's for those who are still trapped, and, most importantly to me, for those who will come after me. A lot of the autism awareness schmaltz I dislike so heartily focuses on children, and that's part of the reason it rubs me the wrong way as an autistic adult. But that doesn't mean I don't care deeply about these children and their lives. But I tend to think more about what life will be like for them at the age I'm at now. Will they be bullied and harassed at work/school? Will their professors and bosses not comply with their wishes for accommodations? Will it be too overwhelming for them to enter the world of careers, colleges, and a new set of unyielding rules so different from those in childhood?
I have no real role models in the world of autism to look up to when it comes to issues like schooling and adult issues. I had books, I had people on television. But there were no people directly involved in my life who had autism whom I could confide in. My father, who is the likely candidate from where I inherited my autism, died when I was 13, and my mother is almost frighteningly neurotypical. For the longest time after my diagnosis, I craved a parent-or-older-sibling figure with autism, one whom I could look upon as proof to myself that my life was not being wasted, that I could in fact, make it on my own, as this theoretical role model did. Without sounding too egotistical, I hope that the legacy of myself and other autistic advocates will ripple out to multitudes of autistic people who will be entering adulthood a few years down the road. I already talk with autistic teenagers at the Children's Development Centre, and from the looks of their life stories, life hasn't gotten any easier for your average autistic since I graduated high school.
But it's my hope that they at least know, through their interactions with autistic adults like myself (I'm not the only one with speaking gigs) that it does get better if you persevere. It's heartbreaking to see an autistic youth give up on ever living a happy life, and I've seen it happen too often.
For me, helping ensure, either through direct, hands-on means, like talking to autistic teens and youth, or more bureaucratically, by fighting for equal access for autistic college students, battling eliminationist rhetoric in conversations about autism, and talking about autism with the credo of "nothing about us without us" that these kids get a chance at a better life than I had at their age, is a mitzvah.
For me, the liberation of autistic people from the confines holding them back now is a very Jewish goal. We are all too familiar with the pursuit of freedom from tyranny, and this includes the tyranny of disablism. This is not the only way to view autistic advocacy, but it is one way I look upon it, and it works very well for me.

No comments:

Post a Comment

Post a Comment