The Right to Live and be Different

In February 2000, 130 disabled people in twenty-seven countries discussed bioethics and human rights, and it is with pride that we make the following declaration. Internet publication URL: www.independentliving.org/docs1/dpi022000.html

Disabled Peoples' International Europe
11 Belgrave Road, London SW1V 1RB, UK
Tel: +44 207 834 0477 Fax: +44 207 821 9539
E-Mail: dpieurope@compuserve.com

 

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On 12/13 February 2000, 130 disabled people and parents, delegates from DPI organisations in twenty-seven countries in Europe, African, Australia and North America, met in Solihull, UK to discuss bioethics and human rights. This was the first occasion of its kind and it is with pride that we make the following declaration.

First and foremost we demand:

Nothing about us without us

Up until now most of us have been excluded from debates on bioethical issues. These debates have had prejudiced and negative views of our quality of life. They have denied our right to equality and have therefore denied our human rights.

 

We demand that we are included in all debates and policy-making regarding bioethical issues.

We must be the people who decide on our quality of life, based on our experiences.

We also call on our organisations to give support, encouragement and reassurance to those of us who are representing our views on bioethical regulatory bodies.

Particular support must be given to empower the voice of mental health survivors, people with learning difficulties, people who cannot advocate for themselves and disabled children, in the debate.


Richness in Diversity

We are full human beings. We believe that a society without disabled people would be a lesser society. Our unique individual and collective experiences are an important contribution to a rich, human society.

We demand an end to the bio-medical elimination of diversity, to gene selection based on market forces and to the setting of norms and standards by non-disabled people.

Biotechnological change must not be an excuse for control or manipulation of the human condition or bio-diversity.

We recognise that the only way to ensure universal support for and positive recognition of our particular qualities is through stating our right to diversity clearly, with good arguments, in open and democratic discussion. We must form alliances with scientists, the medical professions, ethicists, policy-makers, human rights advocates, the media and the general public.


All Human Beings are born free and equal in Dignity and Rights

Human rights are the responsibility of the state as well as the individual. Disabled people, our organisations, families and allies must work to ensure that international, regional and national legal instruments include the implementation of rights throughout all scientific advances and medical practices concerning the human genome, reproduction, assessments of quality of life, therapeutic measures and alleviation of 'pain and suffering'.

Biotechnology presents particular risks for disabled people. The fundamental rights of disabled people, particularly the right to life, must be protected.

In particular we demand:

  • An absolute prohibition on compulsory genetic testing and the pressurising of women to eliminate - at any stage in the reproductive process - unborn children who, it is considered, may become disabled
  • The provision of full and accessible (ie. jargon-free, easy to read and in alternate media) information from which people can make informed decisions
  • That European governments do not ratify the Convention on Human Rights and Biomedicine as some sections are in contravention of the two documents adopted at the 1999 UNESCO Conference on Sciences
  • That disabled people have assistance to live - not assistance to die
  • That having a disabled child is not a special legal consideration for abortion
  • That no demarcation lines are drawn regarding severity or types of impairment. This creates hierarchies and leads to increased discrimination of disabled people generally.

Disabled people must join together in solidarity to ensure our voices in these life-threatening issues.


Strength in Unity!

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