Friday, September 13, 2019
Once in a very great while, there’s a disturbance in the force that’s so significant that it compels us here at Smart Ass Cripple to take a brief break from our incessant smart assery in order to pay homage to one of the greats. It then becomes our task to attempt to convey, in our own feeble way, the magnitude of this person’s greatness.
Such is the case with Marca Bristo. First, let’s get the resume' stuff out of the way. She founded and was President and CEO of Access Living, the center for independent living (CIL) in Chicago. Marca served as the chair of the National Council on Independent Living for many years after co-founding the organization in 1982. President Clinton appointed her as chair of the National Council on Disability. She was given the Distinguished Service Award of the President of the United States in 1992. Etc.
When she died September 8, her obit appeared in publications all over the world. Statements of condolence were issued by the mayor of Chicago, the governor of Illinois, both Illinois U.S. Senators, the Speaker of the U.S. House of Representatives and whole bunch of others. Barack Obama put out a statement that said,
"Marca had a remarkable way of bringing out the best within us. For me, she was a trusted voice and a persistent, buoyant spirit."
But what does all that mean for mopes like me? Well, let’s start with Access Living. It was one the first CILs in the U.S. when it opened in a cramped storefront in 1980. It was the kind of place cripples like us hadn’t seen before. Just like the first CIL, which was founded a few years earlier in Berkeley, California, it was operated by cripples and they set the agenda. They pushed for things like accessible public transportation. Holy shit! We were used to dealing with, or should I say trying to avoid dealing with, behemoth cripple charities like the Muscular Dystrophy Association that were practically useless. There were never any cripples anywhere near in charge of these charities. They never asked you what you needed and they would never do anything to rock the boat. If they decided to give you a fucking pony, you were expected to take it and be grateful.
Soon, some of us who hung around Access Living began doing wild shit like organizing actions where we blocked streets and city buses and disrupted meetings of the Chicago Transit Authority board with bullhorns and noisemakers to demand public transit access.
The point is, all of us who did this stuff found each other at Access Living. We realized we shared many of the same frustrations and a desire to do something about it. When cripples acted uppity like this, especially in the 1980s, it often put Access Living in a tenuous position. It sometimes pissed off elected officials and funders who could make life hard for Access Living if they wanted to. I’m sure Marca was tempted to forsake us, but she never did. She never joined in our street actions as far as I remember, but she always let us use Access Living’s office to gather and plot. We used the phones and copy machines to communicate. Access Living staff often joined in our actions. And in later years, some of us got jobs at Access Living and we were actually paid to organize! Holy shit again!
I can’t say I knew Marca well personally. We only hung out socially maybe four or five times, though I always thoroughly enjoyed it when we did. Our relationship was mostly business, but the nature of the business made it an intimate relationship to me. I guess you could say we were teammates. We spent nearly 40 years on the same team that started off as laughable underdogs but slugged it out with the big boys and won enough to be taken seriously. When you lose a teammate like that, it really hurts.
But the team plays on, largely because Marca introduced so many incredible people to this incredible team and signed them up to be a part of it. She was wise and humble enough to not make it all about her so the team could take on the complex and vibrant personality of the thousands of people that propel it. Because of that, the team can somehow survive her loss and be stronger than ever. That’s exactly what she wanted.
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