Access Living in Chicago celebrates 30 years of advocacy

From the Chicago Tribune:

On the credenza in Marca Bristo's sunny downtown Access Living office are a Barbie doll in a wheelchair, a photograph of one of Bristo's two grown children and awards for her equal rights work on behalf of people with disabilities.

The items form a composite of a life — her activism, sexuality and push for independent living — that Bristo didn't think would ever be possible in 1977 when she broke her neck diving off a Pratt Boulevard Beach pier.

Bristo, now 56, is the president and CEO of Access Living, a community-based, nonresidential agency that has advocated locally and internationally for people with disabilities. Access Living turns 30 years old this month and on June 7 is holding its anniversary gala.

One of Bristo's earliest victories was helping draft the Americans with Disabilities Act (ADA). It turns 20 in July.

When Access Living opened its doors in 1980, the concepts of independence, equal rights and reasonable accommodations for the disabled — such as making sidewalks wheelchair-accessible or adding hydraulic lifts to public buses — were cutting-edge and, for many, almost counterintuitive.

Perhaps the same can be said for what Bristo views as the movement's next frontier: "We're still fighting for accessibility and the enforcement of the ADA," said Bristo, who is partially paralyzed and uses a wheelchair. "But now we're working on instilling pride and artistic expression, and creating leaders."

She said the next step is improving the lives of people with disabilities in areas such as affordable housing, education reform and jobs. And helping those abroad.

But to understand the sea change that had to occur in the 10 years between the opening of Access Living and the passage of the ADA, Bristo said you have to understand that dismantling architectural barriers meant, even back then, changing the attitudinal barriers people with disabilities and without erect.

"Those of us trying to make changes incrementally by educating people, well, it wasn't working," said Bristo, appointed in 1994 by President Bill Clinton to lead the National Council on Disability. She was the first disabled person to hold that post.

Bristo said the old medical model pushed for institutionalizing disabled people, and forced them to adjust to the world as it was rather than conceive of the world making adjustments. That was true even though there were anti-discrimination laws regarding fair housing and education on the books prior to the ADA.

Bristo knows firsthand about internalizing the stereotypes.

"After my accident, someone from Prentice Women's Hospital called me and offered me a job" in its family planning clinic, said Bristo, who had come to Chicago to become a nurse-midwife. "The first words out of my mouth were, 'I can't work.' It never dawned on me that I could work from a wheelchair."

Bristo took the job, but the process of her reimagining her capabilities was a journey with many epiphanies. One occurred when she realized that clinic staffers weren't asking disabled women questions about their reproductive health.

"They thought the women were asexual," Bristo said. "That ticked me off."

When the hospital sent her to a conference on family planning, sexuality and disability in Berkeley, Calif., the trip was a wake-up call.

"People didn't stare at you at dinner," she told me. "There were curb cuts all over the city, lifts on public buses. I was still relatively newly disabled at this time. It was a really important period for me."

Her experience in Chicago at the time was different. She couldn't even get to the grocery less than two blocks from her apartment because her wheelchair couldn't manage the 6-inch curb.

But much has changed over the years, in large part because of the hard work Access Living has done alone and in collaboration with others. The city now has tens of thousands of curb cuts. After years of litigation, the Chicago Transit Authority's mainline buses are 100 percent accessible with wheelchair lifts, scrolling marquees and systems that make audible street announcements.

Access Living also has been involved with myriad lawsuits, including three against the state to implement the 1999 Olmstead Supreme Court decision, which requires states to place people with disabilities in the least restrictive setting appropriate to their disability.

The changes haven't just made life better for disabled people — they benefit those without as well .

"We have a generation of young people who have been raised post-ADA," Bristo said. "Those of us who fought for it can still taste the struggle and the victory."

She said it wasn't just a legal victory, but a symbolic one because they were told they couldn't do it.

"We didn't have the Internet to get the word out; it was just mailings and the telephone," Bristo said. "To see a ragtag army of people who couldn't walk, talk, hear or see doing the unthinkable is still rather amazing."