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She was a force of nature

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That's what Edward Kennedy, Jr., head of the American Association of People with Disabilities, said about the great activist Marca Bristo, who has died at 66. She was one of the architects of the Americans With Disabilities Act and also founded the huge and influential services agency Access Living in Chicago. She then went on to found the National Council on Independent Living and become policy advisor to presidents and congressmen, traveling the world as an advocate for accessibility.

I knew her only as a name. Then I read her obituary. What fire she had in her heart. What a life she led. She's definitely humbling and inspiring to read about.





Bristo broke her neck in an accident on the shoreline rocks of Lake Michigan on which I enjoyed so many carefree times when I was young. It happened when she was 23, which was the same age that rapid MS fell on me. But that's where our similarities end. Bristo bounded right back out there, it seems. Fourteen years later she was working alongside the late Justin Dart ("the Martin Luther King Jr. of the disability rights movement," she said) putting together the groundbreaking civil rights law of the ADA. Looking back over the years, I guess I had my moments, but in so many ways did poorly and regressed. I wasted a lot of time, spinning my wheels from frustration. I realize that we're all different and it is foolish to compare. But that is why I use that radioactive word, inspiring, to describe her. I remember the late disability firebrand Dennis Schreiber, leader of the in-your-face Chicago group Disabled Americans Rally for Equality (DARE), telling me on one of our marathon phone sessions ? Dennis was practically deaf and his speech very slow and affected ? he said, "I hear you saying 'can't' about yourself. Stop saying 'can't.'" At the time I felt like I was in a trick bag with little way out, and maybe most people would. But apparently Bristo didn't have that trick bag, or any hardly bag at all. Again, looking back, maybe that bag was mostly in my head. You know it it's like when you look back at your younger self and think, You're doing just fine, little duck, don't be so afraid.

Bristo's New York Times obituary ends with this: 'Ever the advocate, in the days before her death, Ms. Bristo received a phone call from Ms. Pelosi. According to her husband, the Speaker wished her well and said ?I wish there was something I could do,? to which Ms. Bristo quickly replied: ?You can. Move the Disability Integration Act to committee and to a floor vote.?'

If she inspires you like she does me, go over to the Disability Integration Act website and learn about this bill that aims to keep people in their homes (which is cheaper) and not stuck in nursing homes. As services get shortchanged, institutionalization is a very real prospect for many who are disabled. At the website you'll see that the DIA has been reintroduced in Congress. The ball is in play. Find out where your reps are on this issue and put on your inner Bristo.

Comments

  1. SCI-Nurse's Avatar
    Thank you. She was an amazing woman. I am honored to have known her.

    (KLD)
  2. Spitzbub's Avatar
    Thanks for reading. How did you know her?
  3. SCI-Nurse's Avatar
    I was in graduate school in Chicago, at Rush University (her alma mater) in 1981 & 1982, right after she started Access Living Chicago. She was a guest lecturer for our classes, and I also met her at RIC, where I had my clinical. She was also active at a number of disability rights conferences and even on the Phil Donahue show (filmed in Chicago) during the time I was there.
  4. Spitzbub's Avatar
    I saw entirely too much of Rush (as a patient) but 10 years too late. I would love to have heard her speak.