Definitely not a man to mess with

By Sue Careless
The Interim

Dr. Gregor Wolbring is not a man to mess with. The bushy-bearded professor of biochemistry is an academic with a wickedly sarcastic edge. His forceful presence can be disarming. With a thick German accent and deep booming voice, he is not what you envision when you think “thalidomide victim.”

Yet this powerhouse of a man was born without legs. At the April 29 symposium on euthanasia, he roared around the Regal Constellation Hotel in Toronto with a lever-operated wheelchair. Who better to articulate the dangers of “compassionate homicide” than one who is both a research scientist and a potential target for euthanasia.

Wolbring, for all his strength, senses that many in society feel the disabled would be better off dead. Wolbring believes the disabled suffer more from society’s inability to adjust to their special needs than from their actual disabilities.

By not providing the disabled community with reasonable access to housing, transportation, education and employment, society is in effect providing “an inducement to euthanasia,” he told the symposium sponsored by the Euthanasia Prevention Coalition of Ontario.

“Euthanasia is not good for me. It is not good for society,” Wolbring stated bluntly. “It is not compassion that drives the push for euthanasia, but a combination of eugenics and cost-cutting. With an already cash-strapped health care system and an aging population, the drive for euthanasia for financial reasons will grow.”

At the University of Calgary, Wolbring is both a research scientist with the Department of Biochemistry and Molecular Biology, Faculty of Medicine and adjunct assistant professor with the Department of Community Rehabilitation and Disabilities Studies, Faculty of Education.

Yet Wolbring is not content with an ivory tower existence. He serves on the Human Rights Committee of the Council of Canadians with Disabilities. He is also active with the Thalidomide Victims Association of Canada and is the founder and coordinator of the International Network on Bioethics and Disability.

The choice to have doctor-assisted suicide does not enhance the rights of the disabled, elderly or ill, Wolbring maintains. Instead, doctor-assisted suicide and euthanasia “target” them.

Euthanasia and genetics are a deadly duo. “It is estimated that 60 per cent of all people carry a genetic defect.” He warned the audience, “You should be wondering if you will be allowed to have children or continue living.”

Wolbring is quick to note the fallacies in modern society’s logic. Why do we denounce genetic testing of preborn children for sex selection purposes, but allow it for the screening out of disabled children? Genetic sex selection is rightly seen as discrimination, but why aren’t we equally offended by discrimination on the basis of disability?

Wolbring quoted Eike Kluge, a bioethicist in Victoria who said in 1997 in the Globe and Mail, “It can be socially responsible not to bring into the world a child who is fated to suffer terribly for a genetic disease.”

“I’m a defect product,” said Wolbring. “If you medicalize a group then there is only a medical solution, which is eugenics the day before birth, and euthanasia the day after. If you can’t test for a gene beforehand, then euthanasia is a cheap solution when there are so many money-allocation problems in our health care system.

There is suicide prevention for the able-bodied, but assisted suicide for the disabled. “Suicide prevention for you,” noted Wolbring drolly, “but suicide enhancement for us. Society wants the disabled community to have access to a dignified death when we want access to a dignified life.”

Society doesn’t want to fund accessible transportation, education, housing or employment for the disabled so the new solution is an ethical prejudice against the disabled. “The disabled are scared to go into emergency because this society believes disability is harmful.”

Wolbring doesn’t believe “safeguards” against euthanasia will work. It was first argued that euthanasia would be restricted to those with a terminal illness. Now that has been changed to those with an incurable illness. “I’m incurable. I will never get legs,” he says.

There are almost no disabled voices in the academic debate on bioethics. No disabled (or indigenous people) were invited onto the Canadian Biotechnology Committee. Human rights groups, according to Wolbring, also close their doors to the disabled.

A major philosophical shift has occurred. “Society is no longer concerned about what is good for me as an individual but what is good for society. So the disabled become prime targets in genetics and euthanasia.”

In the United States you get three years for killing a disabled child but 30 years for killing an able-bodied child. Wolbring believes that if Robert Latimer had premeditated the murder of one of his healthy children, he would be serving 25 years without parole.

The Nuremburg trials forbade the use of non-competent people for medical research but today the United States uses them. Wolbring fears Canada will follow suit.

“We [the disabled] can’t get organs but we can be harvested for organs. People with Down syndrome are routinely excluded from organ transplants.”

Wolbring recounted how Edmonton’s University of Alberta Hospital initially refused a lung transplant to Terry Urquart, 17, a Calgary teen with Down syndrome. His parents fought for 10 months to have their son placed on the transplant list. Eventually public outcry prompted the hospital to change its transplant policy, which no longer states that candidates must have “satisfactory intelligence.”

It was, however, too late for Terry, who died while on the list, on Nov. 21, 1995. Kathy Urquart has filed a lawsuit against a retired Calgary doctor, whom she claims should have operated on her son soon after he was born in 1978. The case is before the courts.

“If you don’t think people who are disabled have any value, you don’t give them treatment,” Paul Kohl, spokesperson for the Alberta Association of Community Living told The Edmonton Journal.

“First you devalue a group. Then you develop technologies to detect disabilities and then you get rid of the group,” said Wolbring.

“Next the elderly are being medicalized as a group and so again a medical solution presents itself. While you don’t cost money you can live but when you start going downhill, you have the right, and then the obligation, to kill yourself. Will there be a mandatory death age, say 85?”

Wolbring fears our society is mirroring that of George Orwell’s 1954 novel Animal Farm with its chilling logic, “All animals are created equal but some are more equal than others.” In Canada “the able-bodied, healthy and young are more equal than the disabled, the elderly and the ill.”

The “right” to euthanasia and assisted suicide is couched in arguments of personal autonomy and choice. But what choices really offer themselves to the ill and disabled when too often decent nursing homes or palliative care is limited? There are few actual choices or options, which then makes euthanasia look more attractive.

The rationale for living wills is supposedly to promote patient autonomy. “In fact, the hospital is only likely to follow the patient’s wishes if he wants to die,” said Wolbring. Recent cases in Calgary and Montréal show the hospital overruling the declared wishes of patients and their families, if they wished to live, arguing that the treatment desired by the family was “futile care.” Wolbring said anything can be deemed futile care, even tube feeding.

“Individual living wills all too easily become society’s death will.” Wolbring fears there may be less reporting of hospitals overriding the patient’s or family’s will, and he suspects an increase in the practice. Instead of a living will, Wolbring recommends a substitute decision-maker who is authorized by the patient to speak for him.

Dr. Wolbring is one of the few voices from the disabled community engaged in the academic discourse on bioethics. Check his website at www.thalidomide.ca/gwolbring