Personal Empowerment: Toward Full Integration & Participation

By Helena Katz

Traci Walters, National Director of the Canadian Association of Independent Living Centres, believes that advocacy starts form within. Once people with disabilities feel confident advocating for themselves, they often begin to advocate for others. "People who have had help overcoming barriers want to give back to the community," says Walters.

While independent living resource centres (ILRCs) provide individual advocacy, self-management and empowerment skills development, organizations such as the Canadian Disability Rights Council and the Coalition of Provincial Organizations of the Handicapped "deal with the bigger picture," Walters says. "They focus on political and systemic issues and legislation over a long-term period. This role is as vital as ILRCs, which teach people to advocate on their own behalf to overcome barriers in their daily lives."

These barriers may include such things as being unable to get into an inaccessible grocery store, disclosing abuse in institutions, or, for a person in an institution, wanting to have supper half an hour earlier or go to bed at 10 p.m. instead of 8 p.m. "These are very specific barriers which this person is dealing with and needs support from ILRCs for," Walters says.

It was a presentation at a 1980 coalition of Provincial Organizations of the Handicapped (COPOH) conference in Vancouver that gave birth to the independent living movement in Canada. Allan Simpson, now the managing director of Winnipeg's ILRC, realized the need for individual advocacy. "Rather than limiting ourselves to broad political and social change and group actions," he says, "we could go back to our grass-roots and work with individual growth and development. We could help people represent themselves rather than always having someone represent them."

Walters explains that prior to the independent living moment, "someone advocated for people with disabilities, but not necessarily for what the person with a disability wanted."

ILRCs reflect all disabilities and provide peer advocacy, information and referral. "We truly provide what many may call a service," Walters says. "We give the tools, resources and information to empower people with disabilities to advocate for themselves."

The Independent Living Empowerment Skills Development (individual advocacy) core program provides self-help, information and skills training to help individuals with disabilities develop the skills that allow them to overcome obstacles and solve problems for themselves. Support in learning to manage, deal with and access integrated community services and resources is essential in making independent living a reality.

The role of advocacy staff within the ILRCs is to assist individuals to identify their goals and barriers, and help develop their own skills as self-advocates.

"Someone may call a centre because they want to write a letter to the supervisor of a program which they feel is not working for them," Walters explains, "but they can't write because they lack the literacy skills or don't have use of their hands." That person would dictate the letter to an advocate, who would write it on their behalf. "Sometimes the barrier to self-advocacy is not knowing who to write to or not getting moral support through it," she adds. An ILRC staffer may act as a mediator or go with an individual to help them present their position to achieve their independent living goals.

"The key to it is the flexibility," Walters says, "because each person is going through their own problems and the solutions must always be tailored to the individual's needs and consumer-directed." Simpson explains that it may take longer to solve problems working at the pace of the individual rather than that of experienced housing co-ordinators who may work at ILRCs. "But that is time worth spending," he says.

Simpson recounts the story of Cathy, a 24-year-old woman who had lived in a hospital for two years, was ventilator-dependent and determined to get back into the community. She wanted to go back to college to study accounting so that she could return to a normal life-style. This was something other ventilator-dependent individuals had already done. But the doctor of this respiratory unit was planning to expand his facilities, and he lobbied strenuously for Cathy to accept that she would spend the rest of her life in a hospital setting.

Before Cathy went, alone, to a meeting her doctor had arranged to outline her future, Simpson shared a technique with her. "When they're about to say you can or cannot do something," he told her, "take your pen and paper and say, "Oh, doctor, just a minute. Let me write that down - you're saying that I, Cathy, am not allowed to do this ... Can I just write this down?" At the meeting, Cathy did this three times, and the doctors "just stopped in their tracks," Simpson says. Not wanting to go on record as denying Cathy her rights, the doctor let the young woman fulfill her with to return to the community.

Personal empowerment has a "ripple effect," says Walters. "By overcoming their own barriers, learning to advocate for themselves, and coming to the independent living resource centres, people with disabilities become aware of issues our in the community." She points our that leaders of the disability moment are generally people who have been oppressed.

Taking that step form self-advocacy to advocating for political rights is not an easy one. But "like anything in life, if you do something once and you overcome the fear, that's the first step," Walters says.

The person with a disability who has just learned the personal empowerment skills to demand something for themselves may well become tomorrow's leader. "When we've empowered people," says Walters "we have people more able to participate in and contribute to Canadian Society."

Helena Katz is a freelance writer and public relations consultant with Katz Communications in Montreal. First published in the winter 1993 issue of Abilities Magazine.