I have been involved in some way or another with disability activism for over 12 years. One of my first web pages was a disability page (The Invisible Disability Page) which spawned an email list that's still active, though I don't run it anymore.
I've watched the Salem Commission on Disabilities struggle to get things accomplished in the city. We have no budget and are an advisory commission; as I said in a previous post, we rely on moral suasion to do our job.
It's easy to be a "disability spokesperson". All you have to do is just appear (and stand or sit) while everyone tells you just how courageous and heroic you are. "Oh, what a role model you are for today's youth!" I've seen a number of disability advocacy groups (and worse yet, have been in a few of them) that get the funds in this way.
I note with no small amount of cynicism that that is what not a few politicians and community leaders want out of the Commission. Just put the cripple of the month on the podium and say nice words about "courage".
"So long as I confine my activities to social service and the blind, they compliment me extravagantly, calling me 'archpriestess of the sightless,' 'wonder woman,' and 'a modern miracle," Helen wrote to her friend Robert LaFollette, an early pacifist who ran for president as a third-party Progressive candidate in 1924. "But when it comes to a discussion of poverty, and I maintain that it is the result of wrong economics - that the industrial system under which we live is at the root of much of the physical deafness and blindness in the world - that is a different matter!"
Seemed like Helen was a quintessential firebrand socialist! We can't be that feisty--our commission by necessity is non-partisan, even in this blue town, but her attitude is something I want to live by.
I can't count how many times I hear from disabled "spokespeople" who seem to all say the same things: "I want to be an 'ambassador of good will"' "This disabling condition is so Hard but it teaches me Something Important about Myself/Society/The Universe" "We need more funding/sensitivity/good feelings for <the disease of the week>!"
Those sentiments are what token disabled people say, and I hate tokenism and the twee sentimentality that is too often part of the disability experience!
Our meetings are very unsentimental. Oftentimes, they have topics brought forth from problems our residents have. Things like sidewalks being too rutted for wheelchairs, or trees planted in the way of someone trying to use a walker. Or the endless handicapped parking space circus.
It is just as you would expect from a good committee. Lots of discussion. Some yelling. If we're good, some issues get to be resolved right there. More often the case, things are put off to a hopeful resolution in the next meeting. Remember, we rely on moral suasion, so a good outcome just means we got the city, the state or a property owner to go along with our suggestions.
And the meetings are broadcast on local cable TV, so the whole city sees what we do.
You don't get the work of the city done by being a token for anything.
My chairman has multiple disabilities and he is raising two special-needs kids himself. I don't always agree with the things he decides on, but he's put in the effort to be informed on disability issues. He's no token. Or my fellow commissioner Andy LaPointe, blind but an absolute demon workaholic! He's no token either. None of us are.
No wonder that I'd rather follow my colleagues on the commission, than any twenty "courageous, inspirational crips" with no other talents other than to be pitied on the podium.
I didn't apply for a commission seat just so I could be a token. I'm using my talents in IT and video to balance the needs of people with disabilities, against the tyranny that the majority tends towards. And I am a fervent believer in transparency.
You don't do those things by being a token.