Nothing About Us Without Us: Report on Disabled People, Bioethics and Human Rights -
A Millennium Conference organized by DPI Europe

By Swantje Koebsell, Centre for Independent Living Bremen, Germany

It was the first of its kind and the aim was to facilitate a discourse about bioethics in the disability rights community. Usually when bioethics are being discussed this is done in the physical absence of disabled people.  That is, we are physically absent but always present as objects of bioethical concern. Bioethics are understood as "The development of a set of moral principles for medical and biological research" (Disability Tribune*, Feb. 2000, p 3), or, more precisely, to create ethical principles that allow researchers and doctors to handle the newly arising possibilities from progress in medicine and biology. Under the concept of bioethics means of selection at the beginning and end of life are being discussed more and more openly, and cost-benefit arguments become more and more important. This discussion has brought forth a process of devaluing disabled life which has societal implications and is followed not only by massive discrimination but finally by existential threats, especially for people with impairments. As Robert Edwards, a famous British embryologist recently put it:" Soon it will be a sin for parents to have a child which carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children".

So it was high time the disabled community started discussing the various aspects of bioethics and their impact on the lives of disabled people. To do so on February 12 and 13, 2000 some 130 disability rights activists and their allies, amongst them quite a few scientists, met in Solihull, UK. The delegates came from 27 countries not only from Europe but from as far away as Africa, Australia and Canada as well. All speeches were held and all workshops run by disabled experts.

Program Highlights

In the plenary session on the first day Dr. Jackie Leach Scully from the University of Basle, Switzerland and Dr. Gregor Wolbring from the University of Calgary, Canada gave their views on the matter.  Dr. Scully pointed out that bioethics in itself is only a scientific discipline which does not autoomatically lead to oppressive practices but might even hold a certain potential for human liberation - even though is was usually being discussed quite differently. Dr. Wolbring's contribution was concerned with the question of bioethics and human rights. He said bioethics were based on "Animal Farm Philosophy: Some are more equal than others".

This became evident in the bioethics discourse where e.g. often the language of the human rights movement is being used, but not in the context of human rights as universal rights for everybody - a concept denied in bioethics. He also reflected on how bioethics supports the medical model of disability which, of course, calls for medical, not social, solutions and thus paving the path for even life-threatening discriminations against disabled people. But even though there has been massive discrimination, disabled people have great difficulties in forming alliances with other human rights groups. In Wolbring's opinion, this  is not surprising: as eugenic thinking prevails there as well as everywhere, no solidarity could be expected. So disabled people will have to fend for themselves and shape the debate, get involved.

Workshops

To enable people to do just this, the next day offered a wide range of workshops. Some focused on human rights and their violation or fragmentation in bioethical contexts as well as on prenatal testing, the involvement of disabled people in counselling, how to incorporate our voices in Bioethics Advisory Committees and Regulatory Bodies, Consultation and Campaigning on Genetics, New Eugenics and euthanasia with a contribution from "Not Dead Yet", USA. Discussions were lively and resulted in a declaration entitled, "The Right to Live and Be Different". In this disabled people demand, among other things: to be included in all debates and policy-making regarding bioethical issues, an end to the biomedical elimination of diversity, the protection of disabled peoples' human rights - particularly the right to live. Furthermore European governments are asked not to ratify the Convention on Human Rights and Biomedicine of the Council of Europe and it ends in an appeal to all disabled people to join in solidarity to make sure our voices are being heard.

The conference was a big success for the disabled community. With delegates from so many countries it can be safely assumed that in more and more places the discussion about bioethics and the impact on disabled peoples' lives will start and/or continue. The disability community really has to compliment DPI Europe on organizing this event and we are looking forward to the next meeting of this kind which hopefully will come soon.
 

Further information

The full text of the Declaration can be downloaded at: www.independentliving.org/dpi/022000.html

People interested in further information on bioethics and related issues can subscribe to the discussion forum of the International Network on Bioethics and Disability under Bioethics@onelist.com
 

September 2000 in London:
"Bioethics in the New Millennium - Ethics, Law and Policy"
Fifth World Congress of Bioethics
organized by the Center for Ethics in Medicine in association with WHO

for detailed information see: www.uclan.ac.uk/facs/ethics/fifthcon.htm

*Disability Tribune is the monthly, international  periodical of Disability Awareness in Action. Email admin@daa.org.uk and website http://freespace.virgin.net/research.daa/index.htm