Access Living founder Marca Bristo made us all listen, including me

The first time I met Marca Bristo, I am sorry to say, I made it all about me.

Marca, who founded Access Living of Metropolitan Chicago, an advocacy organization for people with disabilities, rolled into a conference room at the Sun-Times in a wheelchair, where she was to meet with the editorial board. I took this as my cue to tell her about my own mild disability, my bad hearing.

I didn’t actually call my hearing problem a disability. I didn’t think of it that way. It’s not like I used a wheelchair. I just couldn’t hear well.

But I knew I wasn’t dealing with my hearing loss as well as I could, and something told me that this woman who fights for people with disabilities — the real ones — might have something helpful to say about that. Besides, I had to explain why I’d be leaning forward during the meeting, asking her to repeat herself.

“I have trouble hearing people,” I warned her, “so you should know that.”

She nodded.

“I can hardly use the phone anymore,” I said. “Thank God for email.”

She raised an eyebrow.

“And I can’t go to the movies or a play anymore. And if there’s a fire truck with a siren coming up behind me, I won’t even hear it.”

She kept listening.

“I’ve got these hearing aids,” I said, “but they don’t do the trick anymore.”

Marca pointed at me. She shrugged.

“You have a disability,” she said. “You don’t use the word. You should.”

A disability. Yes. I had a disability.

Which is life, in the way Marca put it, and not to be denied. My disability didn’t define me, which I suppose is what I feared. It’s just part of the deal.

Photo provided by Access Living

So began my education, about 10 years ago, in how to think about disabilities. I had a master teacher.

Now, that teacher is gone. Marca died early Sunday morning at 66 after spending time in hospice care. She had retired from Access Living only last month, a reflection of her commitment to her work and the powerful difference she’s made in so many lives.

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.

Over the years, I’ve written a number of editorials about the difficulties and rights of people with disabilities — at home, at school, at work — and while doing my research I shot emails to Marca.

“What’s your take on this?” I asked.

I often learned I was missing something.

Last fall, for example, I wrote an editorial about the failure of the Chicago Public Schools to hire enough nurses. My news “peg” was a story by Sun-Times reporter Lauren FitzPatrick about a 5-year-old boy on the Northwest Side who could not attend school unless his mother went with him and sat by his side. Somebody had to operate the boy’s food pump and there wasn’t always a nurse.

In the editorial, I made the obvious arguments. Children’s health was on the line. Federal law requires that there be a nurse. A nurse can be as important to a child’s education as a teacher or a textbook.

It was Marca, though, who pushed me on the larger truth — that this entire issue would be a non-issue if people with disabilities were not still seen, in subtle and unacknowledged ways, as somehow apart from the rest of us.

The last sentence of the editorial made the point. The words were mine, but the clarity of thought was all Marca’s:

“When we fully understand, as a society, that school nurses are not ‘extras’ — because kids with disabilities are not ‘extras’ — we predict this chronic shortage of nurses will magically disappear.”

I can’t tell you a whole lot more about Marca, not from personal experience. Most of what I know about her professional accomplishments and personal life I read somewhere, just as you might.

About how she was paralyzed from the chest down in a diving accident in 1977, when she was 23. About how she co-founded the National Council on Independent Living. About how she helped write the Americans with Disabilities Act of 1990.

About how she chaired the National Council on Disability — the first person with a disability to do so.

About how she got married — after the diving accident — and had an adult son and daughter.

About how she founded Access Living.

About how she once chained herself to a bus as part of an effort — successful — to force the CTA to make mass transit more accessible to people with disabilities.

Marca was not my pal. She was strictly a source. Even if I once felt free to babble to her about my failing hearing (much improved, by the way, since I got a cochlear implant).

She flooded me with information, enlightened and challenged me. She was big on challenging.

She made my work better even when I didn’t necessarily see things her way.

That little boy finally got his school nurse. I credit FitzPatrick’s story, followed by the editorial, for that.

And for any real wisdom in that editorial — and in many others that went to bat for people who are up against it — I credit Marca Bristo.

I just leaned in and listened.

Tom McNamee is the editorial page editor of the Chicago Sun-Times.

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