COVER

SYMPATHY AND ANGER

Some disabled people feel ‘endangered’ in Canadian society

MARK NICHOLS November 17 1997
COVER

SYMPATHY AND ANGER

Some disabled people feel ‘endangered’ in Canadian society

MARK NICHOLS November 17 1997

SYMPATHY AND ANGER

COVER

Some disabled people feel ‘endangered’ in Canadian society

Seven-year-old Jacob Edelson cannot speak, his limbs have no strength and, because his brain stopped developing 12 to 14 weeks after conception, he is severely mentally retarded. And yet, says his mother, Toronto trade unionist Miriam Edelson, Jacob responds to things—to light, to music, to people. “He teaches us,” says Miriam,

“something about the essence of being human—how we try to connect with each other, and how much we need each other.” Nevertheless, Edelson sympathizes with Robert Latimer. In a letter she mailed to him last week, Edelson wrote, “I believe your act was genuinely motivated by love,” adding that “you, however imperfect, are not a murderer.”

As for the ethical issues involved, Edelson told Latimer that after much thought “I can say that I believe in mercy killing, in certain situations.” Because Jacob requires virtually nonstop attention, he lives in a palliative care home in Belleville, Ont., 190 km east of Toronto.

Doctors say Jacob will probably die within a year. “When his time comes,” says his mother, “we don’t want heroic measures to keep him alive. I want to be there holding his hand, but...”

In the debate over the difficult issues of euthanasia and assisted suicide, there are no clear guideposts. Countering the many expressions of sympathy for Latimer last week were organizations representing Canada’s disabled people. Their spokesmen say bluntly that Latimer is a convicted murderer and deserves no special consideration.

‘This was not assisted suicide or euthanasia,” says Laurie Beachell, national co-ordinator for the 150,000-member,

Winnipeg-based Council of Canadians

with Disabilities. “If Robert Latimer’s attempt to avoid the courtimposed sentence is successful, the rights of people with disabilities will be devalued.”

In the minds of disabled Canadians, that is not an abstract argument about justice—it is a matter of sheer survival. Catherine Frazee, 43, a Toronto human rights consultant who has spent her life in a wheelchair because of a congenital muscular disability, says that “until the Latimer case erupted, I had no real grasp of the extent to which disabled people are endangered in Canadian society.” People with disabilities, and their care-givers, may periodically encounter crises, she notes. “But society cannot give permission for people to take the irrevocable step of murder at these times—and deny a disabled child the right to live and develop,” adds Frazee. “If that were the case, many of us would not be here today.” The greatest fear of some disabled people, says Beachell, “is not that if they go into hospital they will be kept alive against their wishes—but that someone will put a ‘Do not resuscitate’ sign over their bed and they won’t come out again.”

Such a direction does appear in Jacob Edelson’s medical file. His mother believes that “when his body tells us it’s time, you have to let nature take its course.” After Jacob had lived at home for five months, Edelson decided she was not capable of providing for him. “I knew what my limits were,” says Edelson, who is in a postgraduate program in bioethics and sociology at the University of Toronto. “My husband and I agreed the best thing was to have him in a very good palliative care facility.” She says she could find no suitable facility in Toronto. Edelson and her husband separated last year, after having a second child—a daughter, Emma, now a lively five-year-old with no disabilities. Edelson visits her son about every two weeks, usually taking Emma. “But it’s not often enough,” she

says. “There’s a lot to be gained from spending time with Jacob.”

Teresa Rojas, whose 18-year-old daughter, Tania, is severely disabled physically and mentally by cerebral palsy, faced some of the same choices as Edelson—and made different decisions. Because she does not believe any institution can provide adequate emotional support, the Chilean-born Rojas looks after Tania herself at their home in Victoria. “I don’t go out much, I don’t go on holidays,” says Rojas, who is divorced from Tania’s father and supports herself, her daughter and her 20-year-old son, Shon (who is not disabled), on about $1,300 a month in government assistance.

Like Edelson, she views Robert Latimer with compassion. “I know what it is like to see your child in pain and not be able to do anything,” says Rojas. “It is the worst thing that can happen to a human being.” She does not condemn Latimer’s decision to take his daughter’s life. “What is wrong,” says Rojas, “is that someone like him cannot appeal to the courts in our society and be granted permission for legal euthanasia,” once all possible medical avenues have been explored. But she concedes that, given the powerful opposition of disabled organizations, and the reluctance of politicians to grapple with the painful ethical questions, legalized euthanasia in Canada remains a remote possibility.

MARK NICHOLS