Karen Tamley: Advocrat, Wife, Mother

karen1A high-powered advocrat, Karen Tamley has built a rich family life and a unique version of the American dream.

“Your husband is killing me!”

No, this isn’t the line from a love triangle gone bad, it is Dominika Tamley, the 7-year-old daughter of Karen Tamley and Kevin Irvine, objecting to being disciplined. Dominika is a constant source of laughs for the Chicago power couple, who find themselves waiting to see just what she’ll come up with next.

Neither Tamley nor Irvine thought they’d ever be parents. She was born with sacral agenesis and used a wheelchair from a young age. He had hemophilia and contracted HIV from a bad blood transfusion. Given their disabilities, the couple was convinced parenting wasn’t an option for them. But fate, as they say, had other plans.

Long before Dominika was even a twinkle in her parents’ eyes, Tamley grew up being bussed to a school for children with disabilities. Doctors at the time said she would never sit up and never leave the house. Her parents chose to ignore the doctors and sought to give her a good life with her family. Her Dad was into adaptive equipment before it was even a concept. “He was always making things,” says Tamley, “a wheeled board I could scoot around the house on, sticks with hooks to reach the lights.” And her Mom got her into adaptive horseback riding, then sailing. She was also adept at music, taking flute and piano lessons.

Transitioning to mainstream schooling was “scary,” she says, “because I went from a school where everyone had a disability to being the only one in the school.” Though society might not have expected it, her parents had no doubt she would graduate high school and college and get a job. She went to UC Berkeley, not because it was the hotbed of independent living, but because it was a “stellar school.”

There she pursued a psychology degree. “I wanted to do something to help people.” Though she spent four years at UC Berkeley, learning the history,
meeting the people, she didn’t identify with the disability movement. “My priority was being a student,” she says. “I met Ed Roberts, Judy Heumann. It wasn’t untillater that I really realized what legends they were and how fortunate I was to be there and to meet them.”

Interning for disability rights attorney Tim Cook in Washington, D.C., she says, helped her better understand. “I really started to become aware of the movement.” Through Cook, she got
involved in grassroots advocacy, attending the first ADAPT action for personal attendant services, one of many she attended, which, she says, helped her integrate the disability side of herself. “The power of the ADA passing, seeing the movement in action — that made me feel part of something.”

“And,” she says, “Tim was always throwing me into something. When he sent me to the ADAPT action in Atlanta, he said, ‘I want you to go to this conference.’” Then she got to Atlanta and found out what was really happening — people protesting in the streets, getting arrested. “He figured if I knew what was really going on, I’d be too scared to go!”

Next, Cook decided he wanted to file a case in the New York District Court against the Trump helicopter service, which he believed discriminated against wheelchair users. “So he tells me to go and try to take this helicopter to New York City to file this case for him,” says Tamley. “Here’s 20-something me, heading to this helicopter by myself, only to find out that it didn’t exist anymore. So no Tamley versus Trump got to be filed. Donald should be grateful! I loved that Tim didn’t have a doubt in the world that I would get to New York by myself and do the job.”

If she didn’t know she was going to be an advocate, watching Cook  litigate solidified it. “I remember a case in Baltimore dealing with a girl who used a wheelchair whose school wouldn’t let her participate in band. He was amazing to watch.” He invited her along when the ADA was signed into law. “Being on the White House lawn, part of history, watching the president sign,” she says, “though I was young and brand new, Tim really helped me understand the struggles that went into the passage of this law.”

From ADAPT to Access Living
After two years in Washington, D.C., Tamley was recruited by Wade Blank, the co-founder of ADAPT, to work in Denver on an integrated housing program. “Wade was just incredible to learn from. He is one of the few people I know who could work equally well with advocates, politicians, anyone. Everyone liked and respected him.”

Blank started out working at a nursing home in Denver. Becoming disgusted with how limited people’s lives were and how little respect they got, he formed Atlantis, a support agency that moved people out of institutions and into the community. “We did a lot of accessibility surveys together, housing, personal assistance services, advocacy,” says Tamley. “Wade did it all.”

Just how much impact he had was evident at Blank’s funeral. When he and his son drowned while on a family vacation, people from all over — mayors, politicians, advocates — all came together to pay respects to the man who effectively transformed the notion of how people with disabilities should live. And Tamley was forever transformed by the experience of working with him —both personally and professionally. “Working with him, I began to see that things I never thought possible actually were.”

Possibilities, both personal and professional, continued to open up for this budding activist. “I dated for the first time,” she says. “It was hard to imagine that it was possible for me back in high school.”

Dominika helpfully offers coaching advice to Mom.

Dominika helpfully offers coaching advice to Mom.

Through her ADAPT work she met Beto Barrera from Chicago’s Access Living, a long-time disability advocate on housing issues. “We got arrested together,” says Barrera. “We were sitting in jail waiting to get out and just started talking. After that, because this was back before the Internet and e-mail,” he says, “we started keeping in touch on the phone.”

In 1995, they were together at a HUD Fair Housing conference. “There,” he says, “we took over the meetings. There were no people with disabilities in the meetings, no one to represent the disability viewpoint.” Ultimately, they were able to get a meeting with HUD Secretary Henry Cisneros.

“That was a big victory,” says Barrera, “the beginning of the organized housing movement for people with disabilities. Karen, who was young and still pretty green, took charge and presented Cisneros with our list of demands. And he listened, and began to work with us!”

Not long after, Barrera offered Tamley a job at Access Living in Chicago. Tamley, says Barrera, was it. “She has this gift. She moves people. She will make you not only sit and listen, but do something about it.” She took the job and moved to Chicago, working on housing policy for a little over three years. “We founded DRACH, a disability rights advocacy coalition for housing,” says Barrera. “We changed the landscape of housing in Chicago.”

Tamley agrees. “Thanks to the great disability advocacy community in Chicago, we were able to develop and implement the most progressive accessible building code in the nation. And, we’re revising it now to make it even stronger.”

Tamley wound her way through the ranks, gaining the respect not only of the advocacy community, but also of her employer, Access Living. “They promoted me to program director,” she says. “Moving into that job rounded out my skills in management, budgeting, and grant writing. As an advocate, I was able to help people who had spent their lives being carried up and down the stairs in an inaccessible two-story flat to find housing where, for the first time ever, they could independently come and go in their wheelchair. In management,” she says, there’s a different kind of satisfaction. “There’s a great feeling when you’re able to help make an organization the best it can be.”

Meeting the Right Man
Her life hasn’t been all about her career, though. She met future husband Kevin Irvine while leading an ADAPT workshop in 1995. The attraction was instant. “She had a great energy about her,” says Irvine.

Although they became friends, neither one thought more was possible. “She thought I was gay!” Kevin laughs. “Wearing a ‘Silence = Death’ T-shirt is not the best way to meet a woman.” Kevin is open about his hemophilia and HIV status, which, he says wryly, has often led to the mistaken assumption that he is gay. Once that misconception was out of the way, the pair wasted little time in committing to each other. “We started dating when she was getting ready to move. We spent the next year dating long distance, me in New Mexico, her in Chicago,” he says. “After a year, I wised up and moved to Chicago!” A few years later, they got engaged. Says Tamley, “I had no idea it was coming.”

They were at a friend’s wedding, sitting at the bar. As happens at weddings, the subject of marriage came up. “I asked him if he saw himself being married,” says Tamley. After some internal dialogue, Kevin dove in and proposed on the spot. “The first thing out of my mouth was, ‘You aren’t drunk, are you?’” she says. “The second was, ‘Yes.’”

Their wedding was equally memorable. Planned for September 16, 2001, they were scheduled to fly to San Francisco the afternoon of September 11. “I was packing, watching the news,” says Tamley. “I see these planes crash into the World Trade Center and these horrible events unfold. I realize I am getting married in five days and wonder how on earth we’re going to do it. We ended up packing up the car and the dog and driving to California.”

Unfortunately, they didn’t make it in time to get their marriage license. And though many guests were unable to make it to the celebration due to the 9/11
turmoil, the guests who were on hand made up for it with enthusiasm. Irvine, ever the egalitarian, made sure he started out his life as a married man on equal footing with his new bride. He had a “dancing chair” made so he could enjoy dancing the same way she did. At the end of it all, since they didn’t have their license, the judge could only declare them committed life partners, not husband and wife. Two months later they got the legalities out of the way with a second wedding in Chicago.

They returned to work (she at Access Living, he at Equip for Equality), and though some couples find it difficult to work in the same field, Irvine says, “We’re very complementary. We care about the same issues.” Tamley concurs, and with the job she now holds for the city of Chicago, their discussions are even richer.

The People’s Advocate
In 2005, the position of Commissioner of the Mayor’s Office for People with Disabilities came open. The Chicago MOPD is the first of its kind in the nation, created by then-Mayor Richard M. Daley in 1989. Tamley was recommended for the job. No longer the young woman unsure of her abilities, she knew what she was capable of and saw this as a huge opportunity to make a real difference for the disability community. “I remember I was in Springfield,” she says. “I got a call saying the mayor wanted to appoint me the next day, and I needed to have a speech ready for 9 a.m.!”

“This was a great move for her,” says Irvine. “I think we need people with disabilities to take jobs in the public sector like that.” Irvine says he’s gained a lot of insight from her government experience. “I’ve learned how difficult it can be to effect change from the inside, how strategic you have to be,” he says. “And I really appreciate how good she is at navigating that.”

“Mayor Daley was really passionate about disability issues,” says Tamley. “remember being in a housing meeting and talking to him about more needing to be done to make housing in the city more accessible. He got really adamant, saying, ‘We better fix this!’” Daley had a personal connection to the disability community — a son who had spina bifida who died at age 2.

Tamley can count Justin Dart and Stephanie Thomas among her disability advocacy mentors.

Tamley can count Justin Dart and Stephanie Thomas among her disability advocacy mentors.

“That personal connection really made a difference,” says Tamley. “I remember being at some disability event, the mayor was there, and it was about a child with spina bifida. Mayor Daley got really emotional. You could see he got it. He identified with it.”

Though many cheered Tamley’s move to the mayor’s cabinet, some weren’t as enthusiastic. Barrera says, “I never imagined it. When she left Access Living, the community lost a great soldier. But,” he says, “her fight is different now and I respect that.”

Long-time friend and disability advocate Stephanie Kanter says it made sense that she got the job. “She is so focused, and so knowledgeable.” Now, eight years in, Tamley has much to be proud of. Over 49,000 new curb ramps built. Accessible sidewalk cafes created. The most progressive accessible building code in the nation. Some of the most accessible public spaces in the city, like Millennium Park. A taxicab initiative to increase the number of accessible taxicabs. “We do a lot behind the scenes that people might not be aware of,” says Tamley. “Ensuring that the city’s emergency plans are inclusive of people with disabilities, for example.”

Family Life, 2013 Version
Even though she has a high-level, high-stress job, Tamley’s life isn’t all disability all the time. “Sometimes,” says Irvine, “we’re just a family.” And the family was complete with the arrival of daughter Dominika in 2006.

Because of the issues presented by their disabilities, they were inspired to pursue adoption. They went to an agency called The Cradle in Evanston, a suburb just outside Chicago. “We were the first couple with disabilities they worked with,” says Tamley, “so we were kind of trailblazers there.”

What happened next was at warp speed. “We weren’t even finished with the home study,” she says, “and the agency says they have a little girl in the nursery that we’d be perfect parents for.” They were introduced to Dominika, then 5 months old, who was born with Apert syndrome, a disability that is characterized by fused fingers and toes, facial abnormalities and a skull which doesn’t allow the brain to grow properly.

“We met her, fell in love with her,” she says. “Before you know it, they called and said, ‘You can pick her up at any time!’ I kind of panicked. We had nothing!” Within a week, they had a daughter.

Soon their lives were filled with therapies, doctor appointments, surgeries and hospitalizations. Something had to give. That something was Irvine’s job. “We needed a lot of flexibility to take care of all she had going on,” he says, “and fortunately we were in a position to be able to have that.”

Both parents bring a lifetime of disability experience to parenting. They see being plugged into the disability community as a huge benefit and want to teach their daughter disability pride — it’s OK to be who you are. Clearly, that is not a problem for Dominika. At a recent Disability Pride Parade in Chicago, no more than 6 years old, she grabbed the mike and shouted, “I’m disabled and proud!” In her class, when they were studying traditions, Dominika had to share a family tradition with the class. She didn’t talk about the usual holidays. Instead, she presented a poster on her family’s favorite tradition — the Disability Pride Parade.

Says Tamley of her present life, “I couldn’t be happier! I am living the American dream. I am married, with a child, a homeowner. I have a career where I can support and give back to my community. I didn’t know that I would ever have those things as a woman with a disability.”

Stephanie Kanter can relate. Having sustained a spinal cord injury in 1995, soon after she was training as a swimmer and working in PR at Access Living, where she and Tamley met, worked together and became friends. In addition to their commitment to advocacy and navigating the world as women with disabilities, today they are both parents of 7-year-old daughters.

Sabine, Stephanie’s daughter, and Dominika, are BFFs to be sure. They participate in ballet together, play together, spend birthdays with each other, travel together. “They are great friends,” says Irvine. “Sometimes Dominika will even pretend to be Sabine, and will only answer to that name. She has a great flair for drama!”

So much so that her father has taken to regular Facebook posts to share some of Dominika’s witticisms with her adoring public. A recent post: “When I’m not cooperating, don’t tell me ‘knock it off.’ Tell me ‘I don’t have any words!’” And another favorite: “The kid (who didn’t want to take a shower today) told me she took a shower at school where they have showers, soap and towels in the lunchroom. I’m skeptical!”
The Tamley-Irvine family may not resemble the Leave it to Beaver family of the 1950s and ’60s, but they are fine with that. “The hardest part is when Dominika is stared at,” says her father.

To which her mother adds, “I like to tell her, ‘You’re different. I’m different too. And we’re both OK.’”

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