Friday, April 8, 2011

Canadian woman advocates for better inclusion of people with disabilities

From the Edmonton Journal:

EDMONTON, Canada - The day Roxanne Ulanicki (pictured) was offered a medical retirement from her job with the federal government, she was devastated. At the age of 36, it was confirmation that she didn’t belong — anywhere. That same day, the spunky extrovert vowed to use her pension as a paycheque to advocate for the rights of people with disabilities.

Ulanicki born with spina bifida, and the growth of her backbone and spinal column were hindered by a tumour. But no one made her feel like she was different. She was mobile enough with a leg brace and expected to do chores on the family farm just like everyone else. At the age of 12, doctors discovered that the tumour, which had been removed when she was eight days old, had grown back again. An operation at the Sick Kids Hospital in Toronto was successful in removing all of it, but by then, the damage had been done. Roxanne was dragging one leg while walking on crutches and opted to use a wheelchair. Then she discovered wheelchair basketball.

Ulanicki joined the women’s national team when she graduated from high school. She competed at the 1988 Paralympics in Seoul, Korea and travelled internationally for four years while getting a business diploma at NAIT. It was a dream come true.

Then her health failed and when surgery failed to fix the problem, she was forced to retire from the sport.

“It was devastating to me. As a young person, I defined myself around that sport. I had six years of clinical depression where people never saw me. I barely left my house.”

Ulanicki spent almost a decade in her 20s feeling lost, angry and abandoned. As an adult, she was no longer eligible for the government-funded programs that had taken care of her so well through her developing years. When she entered the workforce, she no longer qualified for many other forms of support and most of her disposable income was spent covering the cost of her disability. Her dreams of going on vacation, saving for retirement and living in an adapted home disappeared. And she felt like she was treated as less capable by her colleagues and undervalued in her job. When a big bonus was paid out to all employees, others took a vacation or bought a new car. Ulanicki used the money to pay for a year of counselling.

“It’s the frustration,” she says of the link between depression and her disability. “I grew up my entire life with doctors telling me I could do anything I wanted, that I could be like anyone else. And that’s not true. You hold all this inside, all this frustration about why is this happening and why are people treating me this way. And you just don’t have an outlet that values you for who you are.”

Her biggest frustration has been housing. She moved 18 times over 20 years before she found an apartment that was fully wheelchair-accessible.

“I’ve written letters to the prime minister and probably every MLA in the province and nobody will deal with housing in a way that’s equitable,” says the 42-year-old. “I have a human right to shelter that I can get in and out of. And I do better advocacy work for everyone now that I’m in a stable, accessible home. And I think that everyone should have that.”

She also lobbied Capital Health to get continuing care for adults with spina bifida, which led to a specialized clinic at the Glenrose Rehabilitation Hospital, one of the first of its kind in North America. She now mentors others with disabilities to help them get services they need.

“Average Albertans think we’re taken care of. We’re not. And when you talk to people who have acquired their disabilities later on, they’re horrified at what they have to go through.”

A little over two years ago, she co-founded I-Dance, a troupe that features both able-bodied and wheelchair dancers. It’s an opportunity to get physical activity and give mutual support. But the dances are also a form of advocacy, telling stories about what it’s like to be disabled, to try to change people’s perceptions. In 2009, I-Dance was recognized with a New and Emerging Group Award from the John Humphrey Centre for Peace and Human Rights.

Ulanicki’s vision is a day when the disabled are included and she doesn’t have to advocate anymore.

“I’m going to change the world. It’s so funny how many people feel it necessary to tell me I can’t,” she says with her trademark big laugh. “I grew up in a country that was inclusive. And I don’t know where that went. But I want that back. And I’m going to fight for that.”