European Disability Rights Groups Confront the "Slippery Slope" of Euthanasia
The recent case of Diane Pretty made big headlines in Britain and internationally. The 43-year-old woman who had motor neuron disease and used a wheelchair fought a very public battle in British courts in the hope of having her husband granted immunity from prosecution if he aided her in killing herself.
When she lost at every stage of appeal in her country, her lawyers took her case to the European Court of Human Rights, claiming that by not enabling her to commit suicide legally, British law violated articles of the European Convention on Human Rights that prohibit degrading treatment of citizens by their government. But, all those arguments were lost in that court too on April 29. Pretty died May 11.
George Levvy, chief executive of the Motor Neuron Disease Association in Britain, was quoted in the British press as saying his members were divided in their opinions over the Pretty case. But an informal grassroots disability rights network arose in Britain to counter the threat they thought was posed by the case. Their challenge was to break the media of its habit of framing the euthanasia debate as progressive proponents of autonomy and choice versus religious and social conservatives. They met with some success.
British groups tackle the media
BBC internet coverage of Pretty's death quoted Rachel Hurst, director of Disability Awareness in Action, who said granting Pretty's husband immunity from prosecution, "would be a slippery slope and many people who did not want to die could be affected." The London Herald quoted a statement on the European Court decision issued By Very Much Alive, which it characterized as a "disability pressure group." The statement said, "We hope this is the end of a sorry chapter in legal history, but we will remain vigilant to ensure that euthanasia is never acceptable in a civilised society."
Very Much Alive founder Andy Barry, who has cerebral palsy, says, "I think we created an atmosphere in which people can't say that every person with a disability is for euthanasia." It's no coincidence that Very Much Alive sounds like the proper British version of the American disability anti-euthanasia group Not Dead Yet. Barry and others formed it early this year to "challenge the increasingly common view that sick and disabled people may be "better off dead," he says.
Barry says most of those in the small membership are people with severe disabilities who need daily physical assistance. Like Not Dead Yet, it uses listservs and the internet as it's primary communication and organizing tool.
Hate mail for Hurst
Hurst says she got hate mail in response to her perspectives in the press, but two journalists in particular understood what she was saying and wrote good things. DAA was founded in 1992 by Disabled Peoples' International, World Federation of the Deaf, Inclusion International and IMPACT as an international information network on disability and human rights. The three paid staff produce monthly newsletters and resource kits to help disability rights organizers throughout Europe.
Hurst says "society" is her disability. "DAA does not accept disability as another word for impairment or functioning, but defines it as the interaction between a person with an impairment or condition and the barriers of attitude and environment."
The British Council of Disabled People also took a very public stance in opposition to Pretty's assisted suicide wish. Council director David Coley says the coalition, which formed in 1981, has 130 member organizations. Coley says, "The message from our conferences has been clear: given the current climate of viewing disabled people's lives as lives 'not worth living' it would be immensely dangerous to allow euthanasia. It would inevitably be impossible to legislate to ensure adequate protection, and many disabled people would be offered support in killing themselves rather than addressing the real shortage of adequate independent living services.
We have definitely seen more calls and media articles on assisted suicide, and in nearly every case disabled people are held up as a justification of this as a 'caring solution' rather than addressing the rampant underfunding of accessible assistance, housing, transport and free adaptive equipment. The benefits of funding for personal assistance, and full equal social rights are not given any where near the same media coverage."
Belgium, France and Denmark
But whatever credit this grassroots effort can claim in the outcome of the Pretty case in the editorial pages, it's likely to only be round one. News stories that stir the debate over euthanasia have surfaced around Europe this year. Shortly after Pretty died, Belgium became the only country besides The Netherlands, to legalize euthanasia under certain circumstances. Three days later, Dominique Knockaert, 44, a French woman with the same disability as Pretty, called upon her government to follow Belgium's lead. Knockaert told Agence France-Presse that while she still wants to keep living, she doesn't want to travel to another country should she choose to have her husband assist her in committing suicide.
An opinion poll published in the Danish newspaper, Jyllands-Posten, in May said 82 per cent of Danes supported legalizing euthanasia for those with "incurable illnesses."
Hurst sees in these examples an ominous trend in Europe that is not new. It takes root, she feels, in the better-dead-than-disabled theme of the larger global debate of bioethics. She said, "All of us at DAA know that the current attitudes regarding our quality of life, resulting from genetic advances, are increasing the underlying hate of disabled people and discrimination."
Coley says, "Clearly this issue does need an international response from disabled people, but this is difficult given the different social understandings of our experiences as disabled people around the globe. The fact that the UK and US have been able to speak clearly and with the same voice that euthanasia is a modern peril has undoubtedly strengthened our lobbying."
Grassroots action across Europe
Hurst says, "The European disability movement is trying to do something about this issue, but it is slow as in most of the countries, disabled people are too busy fighting for accessible transport and services and have little understanding of the impact of these eugenic attitudes." But she believes some seeds from which such a movement could grow have already been planted. "We have been informing our (about 70,000) readers about bioethical concerns for at least eight years, through our newsletter and special reports." DAA materials go to 164 countries and are translated into 44 languages.
Hurst also says DPI's European Region has done some important groundwork by speaking out forcefully against many of the negative disability assumptions of bioethicists. In 2000, DPI Europe convened a working group of members from France, Italy, Portugal, Spain and the UK. The result was a position paper entitled," Disabled People Speak on the New Genetics." Its stated purpose is "to influence the European Union, Council of Europe and national governments in their way of thinking on bioethical concerns and to educate disabled people within Europe and the rest of the world"
On euthanasia, the paper states,
"Supporters of euthanasia argue that voluntary euthanasia is a matter of personal choice without recognising the sometimes very persuasive powers of doctors and relatives who may have subjective reasons for hastening the death of an individual, and the lack of palliative care and support services available to ensure a better quality of life.....
"We are deeply alarmed that without proper social and medical support, disabled people are often made to feel a social burden and are under pressure to choose the option of legalised euthanasia. We repudiate the utilitarian ideology which informs much of the new human genetics, particularly the assumption that society would be better off without the inconvenience and expense of disabled people."
Hurst thinks this is powerful ammunition. "As a result of the work done on this, there are more disabled people knowledgeable and committed enough to do further work in their own countries. The really crucial thing is to get more disabled people to feel that they can argue against the scientists and not be intimidated."
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