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Marca Bristo

Monday, Sep 9, 2019

* NY Times

When she was 23, Marca Bristo, a nurse in Chicago, was sitting with a friend on the shore of Lake Michigan. Her friend’s dog accidentally knocked a prized pair of Ms. Bristo’s shoes into the water and, without a second thought, she dived in to retrieve them.

Striking her head, she broke her neck and was paralyzed from the chest down. In that instant, Ms. Bristo’s life changed forever in ways she could never have anticipated. She lost her job, her health insurance, could no longer use public transportation and had no access to many public places.

But rather than dwell on her misfortune, she became a powerful advocate for people with disabilities, spending her life working to change perceptions and the rules in a world that had traditionally ignored the needs of the disabled. She was a key player in the passage of the Americans With Disabilities Act of 1990, which outlawed discrimination against the nearly 50 million Americans with disabilities.

After a long battle with cancer, Ms. Bristo died on Sunday at 66 in her home in Chicago. Her death was confirmed by her husband, J. Robert Kettlewell.

* CBS 2

“I lost my home, because it had stairs. I lost my job. I lost my income. I lost my health insurance,” she said. “But I didn’t lose my friends or my family, and I didn’t lose that sort of fighting spirit.”

Bristo said she and her friends used to have to time their outings based on whether there was a bathroom available – since even when someone in a wheelchair could get into an establishment, the bathrooms often were not accessible.

“And it took me a while to really grasp that this was a matter of discrimination,” Bristo said. “It really took a while for me to let go of my belief that I just had to suck it up, basically, and accept my limitations.”

But as she put it, she came to realize that “my wheelchair wasn’t too wide for the doors; the doors were too narrow for my wheelchair.”

* Tribune

Over the years, her activism took on many forms: She co-founded the National Council on Independent Living in 1982. President Bill Clinton appointed her as chair of the National Council on Disability. She served as the first person with a disability to hold the role from 1994 to 2002. She participated in the negotiation for the United Nations’ Convention on the Rights of Persons with Disabilities, which the U.S. adopted in 2006 and was recently appointed n the Ford Foundation board of trustees in June.

Among other things, Bristo was pivotal in forming the first fair housing program to addressed disability discrimination, fought for the inclusion of disability issues in domestic violence law and helped implement the requirement for all televisions to have close-captioned decoders.

Bristo gave her whole self to advocacy, openly telling friends she had several disabilities, some invisible, including a struggle with addiction and alcoholism, Heumann said. She spoke of her life in totality and recognized discrimination within the disability community, fighting for inclusivity within the movement.

“That’s part of the disability experience: taking risks and having a tenacious sense of can-do-it-ness,” Bristo told Chicago Magazine in 2008. “The things we’ve been advocating are not just for a marginal group of people; they’re for the society as a whole. Disability affects all of us. It’s time that we normalize and accept it rather than perceive it to be at the margins of our society.”

* Tom McNamee at the Sun-Times

Marca’s talent was in building bridges between the “abled” and the “disabled” by making us see there is no need for bridges at all. We’re all on the same side of the river. We all have strengths and limitations, capabilities and incapabilities. We’re all of equal value. We all deserve the same rights and opportunities, no more but no less.

There’s nothing controversial in that. It’s what almost everybody believes. But in our daily lives, we don’t always live it. I don’t, anyway, even when I think I do.

We have to be reminded. We have to be told. We have to be told off.

* From Access Living

Near the end of her life, Marca said she had no bucket list — that she had done what she set out to do and seen what she wanted to see. She also shared her firm belief that the disability activism work she started was in good and capable hands to be carried on by the staff at Access Living.

- Posted by Rich Miller        

14 Comments »
  1. - Give Me A Break - Monday, Sep 9, 19 @ 1:56 pm:

    Illinois has lost a true champion for those with disabilities and a hero to an entire generation of advocates who learned from Marca.

    May she rest in peace.


  2. - DIstant watcher - Monday, Sep 9, 19 @ 2:17 pm:

    These tributes to Marca are really wonderful and show the effect one person’s persistence can have. I have to wonder, though, whether she’d bristle at how many refer to “the disabled” rather than “people with disabilities.” By her life she showed that those are very different things, and very few if any people are truly “disabled.”


  3. - Mama - Monday, Sep 9, 19 @ 2:18 pm:

    Rich, thank you for posting this article about a wonderful lady who helped so many people with disabilities.


  4. - lakeside - Monday, Sep 9, 19 @ 2:26 pm:

    She fundamentally changed how the United States works for people with disabilities - literally made the world a better, more functional place. A giant among us and a life well-lived.


  5. - Mongo - Monday, Sep 9, 19 @ 2:51 pm:

    What a great person. Had the pleasure to know her personally many years ago, and also to work with her on a couple of advocacy issues. Talk about someone who does not give up. She wanted (and usually got) it done her way, which meant good news for people with all types of disabilities. Kudos to Lakeside, yes, she was a giant among us.


  6. - illinoisvoter - Monday, Sep 9, 19 @ 2:58 pm:

    Chicagoan of the Year 2007 and really just an excellent human being to all those she encountered.


  7. - JP Altgeld - Monday, Sep 9, 19 @ 3:10 pm:

    With certainty, one of the all time greatest Illinoisans.


  8. - Moe Berg - Monday, Sep 9, 19 @ 3:55 pm:

    One tough lady. A life well lived. She helped bend the arc of history towards justice.


  9. - Amalia - Monday, Sep 9, 19 @ 3:56 pm:

    Rest in peace. smart and wise and able to use her challenge for the good of others. big loss.


  10. - Alex Ander - Monday, Sep 9, 19 @ 4:00 pm:

    === She lost…her health insurance ===

    And this right here, even as a right leaning moderate, I have a problem with. When speaking of Universal health care people only want to point out taxes in Europe. Looking at Canada, they aren’t taxed to the extent that Europe is and they have an excellent HC system. The only people I hear complaining about Canada’s system is Americans. Every Canadian I’ve ever talked to prefers there’s over ours.


  11. - Earnest - Monday, Sep 9, 19 @ 4:06 pm:

    -the passage of the Americans With Disabilities Act of 1990

    Big shoes to fill (or big wheels to push, as the case may be). In the current national political climate would it be conceivable today to pass a law telling states and businesses they need to spend money to physically change the places they occupy and to not discriminate based on a person’s disability? Can there be more lawsuits like Olmstead or Illinois’ Ligas to force a state to create opportunties to live in one’s own community instead of an institution? Will Medicaid, the lifeline of so many people with disabilities, maintain its impact or be crushed by a federal block grant program to limit spending or made less accessible through Illinois’ managed care programs? How lucky we were to have had an advocate from our state make an impact on such a large scale.


  12. - Don Davis - Monday, Sep 9, 19 @ 5:14 pm:

    Marca was at City Club a few weeks back when Sen. Duckworth spoke. She asked the Senator to discuss the issue of how a wheelchair was treated by airlines. It was a great opportunity for Sen. Duckworth to tell stories of how wheelchairs are treated like luggage and too often broken to the detriment of the user. I admired how Marca with one simple question raised my awareness of this problem.


  13. - Matt - Monday, Sep 9, 19 @ 5:55 pm:

    A wonderful woman… she will be missed


  14. - Ken_in_Aurora - Wednesday, Sep 11, 19 @ 3:56 pm:

    She had a direct impact on my wheelchair-bound but active late wife’s ability to live vibrantly in the outside world. Godspeed, Marca…


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