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Karen Tamley was born with a congenital spinal condition that meant she would never be able to walk and would always need a wheelchair. It was the late-1960s, long before the Americans with Disabilities Act was enacted, so there were few resources available for her or her parents. Back then few people expected she would be able to accomplish much in life.
Her mother wasn’t one of them. Tamley’s mother reached out to parents of other children with disabilities in their community and began to advocate for curb cuts and ramps in the community. Luckily, their town of San Anselmo, California, was located across the San Francisco Bay from the University of California Berkeley where a nascent disability rights movement was taking root. Despite her high IQ, Tamley was sent to a public school for students with disabilities. “I had to be bused to a segregated school. It was hard for my sister who didn’t have a disability and it was hard for me.”
When Tamley was in the fourth grade, Congress passed the 1975 Education for All Handicapped Children Act, requiring public schools to provide equal access to education for children with physical and mental disabilities. She transferred to her neighborhood school where she quickly made friends and caught up with her peers academically. “I was the only kid with a visible disability in the whole school,” she remembers. Her parents never coddled her, allowing her to take risks and fail. While others might have questioned that strategy, Tamley is grateful for that. “For a disabled kid, failure is privilege because many parents protect them to the point that they never have that opportunity. That’s how you grow and learn.”
Opportunities came along and I took advantage of them.
Karen Tamley
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Tamley always knew she was going to college. She was accepted at Berkeley, her father’s alma mater, and majored in psychology. After graduating, Tamley worked as an intern for Timothy Cook, a prominent disability rights lawyer in Washington D.C. who had hemophilia. Cook threw her into the deep end. “I wasn’t a lawyer and I was only 22 but I got to work on some really interesting cases. He sent me to New York to file a case. He insisted I take the Trump helicopter from LaGuardia because he heard they were denying access to people with disabilities.”
Cook also introduced Tamley to the militant end of the disability rights movement. He sent her to “conferences” around the country that turned out to be more like demonstrations. “When I got back, he would ask if I got arrested and I usually did. He thought that was an empowering experience for me,” she says. A few days before Cook died at age 38, Tamley learned that he had contracted HIV from tainted blood products used to treat his hemophilia, something he hadn’t shared with her.
Shocked by his death, Tamley also knew she needed a new job. She was recruited by Wade Blank, a Denver activist in the independent living movement who pioneered the movement to get people with disabilities out of nursing homes and into accessible and integrated housing. She helped develop home mortgage and lending programs for people with disabilities and founded a housing coalition of advocates around the country who pushed for more enforcement of fair housing laws. Then an opportunity to work at Access Living, a Chicago nonprofit that advocates for the civil rights of people with disabilities, came her way. Access Living founder Marca Bristo was a pioneer in the disability rights field and Tamley wanted to work with her. After relocating to Chicago, Tamley worked as the group’s housing policy coordinator and then became director of programs. As her professional life was evolving so was Tamley’s personal life. She got married in 2001 and then a few years later she and her husband, Kevin Irvine, adopted a baby girl with multiple disabilities. In 2005, Chicago Mayor Richard Daley was looking for a new commissioner to head the Mayor’s Office for People with Disabilities. Bristo recommended Tamley.
Access Living is thriving and growing under Karen’s leadership.
CROR Director Allen Heinemann, PhD
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Tamley loved her City Hall job. She pushed the city to make its infrastructure and transportation more accessible, whether it was elevators at El stations, curb cuts at corners, or wheelchair-accessible taxis and later Ubers and Lyfts. “We wanted to make sure that people with disabilities could live in Chicago. As a city with snow and inclement weather, it’s a tougher place to live than other cities but from a personal lived experience, I think Chicago now ranks pretty high on accessibility,” she says.
Tamley stayed on as commissioner during Mayor Rahm Emanuel’s two terms and after Lori Lightfoot was elected in 2019. In the fall of that year Bristo stepped down from Access Living and passed away soon after. Tamley was hired to replace her as President and CEO, taking over in March 2020, just as the Covid pandemic sent the country into lockdown. The pandemic changed everything, forcing Tamley to throw her initial plans out the window and switch to a totally remote workplace. “But that allowed us to hit a reset button,” she says. “It allowed us to really think differently about everything. So, we redid our strategic plan so we could focus on the disparities we saw exacerbated during the pandemic including around racial equity for people with disabilities.” (See related article.)
Her priorities also include reducing poverty in the disability community, closing the digital divide and increasing services to Chicagoans who have become disabled because of gun violence. Her efforts received a big boost recently when Access Living received an $8 million gift from billionaire philanthropist MacKenzie Scott.
“Access Living is thriving and growing under Karen’s leadership,” says Allen Heinemann, PhD, Director of the Center for Rehabilitation Outcomes Research at the Shirley Ryan AbilityLab. “She brings lived experience of disability and is always seeking opportunities to make Chicago and Illinois a more accessible place.”
Tamley knows there will always be more work to do around making sure that people with disabilities can live where they want, do the work they want and play active roles in their communities. Now 55 and with a teenage daughter, she doesn’t have a timeline for how long she wants to lead Access Living or what she might do in the future. “I’ve never had a script about what I wanted to do in my life,” she says. “Opportunities came along and I took advantage of them.”