Enabling the disabled

Sonia Arrison
The Next City
December 21, 1988

 

Al Etmanski draws circles of support

WHEN YOU LOOK UP SOCIAL ENTREPRENEUR IN THE DICTIONARY, it should read: Al Etmanski, executive director of the Planned Lifetime Advocacy Network (PLAN) in Vancouver. How else to describe someone who has helped develop a way of saving disabled people such as Peggy and John from the isolation of government institutions?

After a car accident left her severely disabled at a very young age, Peggy was placed in an acute care ward. At first, her mother and other family members visited, but they stopped when the staff convinced them that their visits were “upsetting” Peggy. According to Etmanski, many institutions — with their common leave-all-the-decisions-to-us attitude — all too often discourage family members from visiting their disabled relatives. John’s story is just as tragic. At 10, he slid off his mountain bike, onto a highway, and under an oncoming truck’s wheels. For the next 10 years, he lived in a children’s hospital. His family, like Peggy’s, eventually stopped visiting, and John, who hospital workers thought was unable to communicate, became isolated and depressed.

Fortunately for Peggy, one of Etmanski’s friends, who was visiting a relative in an extended care ward for elderly people, noticed her among the patients. The institution was about to remove all of Peggy’s teeth, so the staff could feed her more conveniently and efficiently. Her family had lost all contact; she was alone. When the friend described the 19-year-old’s situation, PLAN swiftly came to Peggy’s aid and saved her teeth, even though it was a new organization with little money.

PLAN heard about John from a hospital social worker and a student volunteer working in his ward. After realizing that John could communicate by blinking his eyes, they soon understood that he was unhappy about the lack of control he had over his life. Since John’s family was not in his life, the social worker suggested that PLAN seek funds for him from the Insurance Corporation of British Columbia (ICBC is British Columbia’s sole auto insurance provider). ICBC agreed, and PLAN set out to help John fulfil his goal of living in the community with men his own age.

AFTER DISCOVERING PEOPLE LIKE PEGGY AND JOHN, Etmanski, his five paid staff, and 50 committed volunteers can have a tremendous impact. Vickie Cammack, PLAN’s director of members services, meets with new PLAN members (and their families if possible) and helps to select a facilitator from the community. She then teaches the facilitator how to develop a Circle of Support — a group of five or more individuals that “voluntarily commit to support a severely disabled person . . . through friendship, advocacy, monitoring, and companionship.” Creating a circle usually takes three years and costs approximately $3,500, per disabled person, per year.

With time, the members of a circle become “united by a bond of common commitment,” Etmanski explains, and relationships even form among people with very different personalities — people who would not normally become friends. The frequency of circle meetings varies considerably. Depending on the people involved, they may meet once a month or two to three times a year. Some circles even have their own newsletters. But no matter how often circle members meet among themselves, each member spends time with the disabled person outside of the circle, developing a true friendship.

Beyond the obvious role of providing meaningful companionship, circle members “monitor medical care, provide assistance in managing financial affairs, locate housing, assist with moving, advise health care providers and social workers, prevent abuse and exploitation, host birthday celebrations, and help to find employment.” Circle members come from all parts of the community, including “family members, particularity brothers and sisters, neighbors, members of church congregations, service clubs, . . . teachers, and those who have interests similar to the disabled person.” For example, Peggy’s group has a music teacher and has members of a local walking club, who take her for walks and push her wheelchair. John’s group includes a school teacher, a former social service provider, and some fellow sports fans. Over time, people may move in and out of a person’s circle, but PLAN makes a lifetime commitment, ensuring the maintenance of each circle and advocating on behalf of its members.

Thanks to their circles, Peggy and John, as well as the other 450 people that PLAN has touched, now have key people in their lives who treat them not as patients or statistics but as friends. That matters. In fact, it matters a lot. Recently, Peggy, who used to spend her days moaning and lying on her back, attended a Céline Dion concert decked out in a black dress and sheer black stockings. Circle members who share Peggy’s love of music spend their time together listening to their favorite tunes. John now lives in a B.C. community with two roommates. Like others his age, he follows hockey and regularly visits a pub (although he doesn’t drink). Further, John’s sister has re-established contact, and Etmanski predicts that “within a year, his mother will be back in his life too” — a far cry from his former isolated and dreary life in a children’s hospital.

These radical changes are possible because people in the community, with some help from a facilitator, voluntarily come together to support one another. That’s really what PLAN is about: community problem solving and caring. In his book Safe and Secure, Etmanski stresses the importance of friendship in our lives. He writes that we need to realize that people are “interdependent, not independent creatures,” but at the same time he emphasizes that “friendships . . . are formed by choice”; they can only develop through mutual agreement. In other words, you can’t pay someone to be your friend, big government can’t make friends for you, and oftentimes it doesn’t matter how much money you throw at something, the problem won’t disappear without real community involvement.

FEW PEOPLE WANT TO FEEL LIKE SECOND-CLASS CITIZENS, unable to control their lives — especially disabled people. The group of parents with disabled children who formed PLAN in 1989 understood this, and through Etmanski, they persistently explain that “people with disabilities are citizens, with rights and responsibilities.”

Canadians need to “focus on capacity” — what disabled people contribute to society, instead of what they take. For example, Etmanski explains that Elizabeth, his 19-year-old daughter, who was born with Down’s syndrome, has “diplomatic skills mature enough to find common ground even in irreconcilable positions.” She can “assess emotions with uncanny accuracy” and tells stories with “razor-sharp imitations of friends and family.” Further, Etmanski proudly proclaims, Elizabeth is “great with kids” and has volunteered at a local school. Right now, she’s taking classes at a community college. Whether she becomes a teacher’s aid or an artist, one thing is certain — she will be contributing to society. By emphasizing disabled people’s contributions and responsibilities as citizens, Etmanski hopes to reverse the damage done by our current social service solutions. A self-proclaimed “recovering social worker,” Etmanski laments that our current system leads “people to focus on the half-empty part of a person — their needs, their handicap, their disability. This breeds dependency and victimization.”

But changing the system was not the only impetus behind PLAN’s formation. Etmanski and other B.C. parents who had children with disabilities conceived the network because they refused to be victims. They decided to come together to tackle the tough question: What will happen to my disabled child when I die? While stories such as Peggy’s and John’s are important and compelling, the majority of PLAN’s work helps families like those of its founders — families with parents who are involved in their disabled child’s life and are eager to plan for their child’s future. With PLAN, parents don’t need to agonize over what will happen when they die; a circle will monitor their children’s living conditions, provide friendship, and ensure that they get the services they need.

PLAN’s revenue stands as a testament to how much the people involved believe in it — 49 per cent comes “directly from families,” who purchase lifetime memberships for $1,000, plus $100 per year (family-funded trust funds ensure that this $100 fee is paid after the disabled person’s family dies). The rest of PLAN’s funds come from the corporate and philanthropic sectors, as well as from book royalties (Etmanski’s next book, tentatively titled The Good Life, will be published soon). In order to retain its advocacy role, PLAN refuses government support. In fact, it encourages families to “reduce their dependence on government and to plan ahead using their own financial resources to finance the future well-being of their disabled son or daughter.” PLAN charges those who can afford its services and fund raises for those who can’t. This collection scheme reflects PLAN’s belief that people should contribute what they can.

PLAN, with Etmanski as its leader, is battling modern society’s dysfunctional understanding and treatment of disabled people. He’s working hard at a local level to ensure that disabled people become and remain a real part of our society.

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