Summary

Lives worth living: fighting ableism and the devaluation of the lives of persons with disabilities.

The report explores the impact of ableism in medical and scientific practice, as well as bioethical responses to disability. It also discusses areas where potential tensions could emerge, including notions of normality and quality of life, prenatal diagnosis and disability-selective abortion, controversial and/or irreversible treatments, and euthanasia and assisted suicide.

Based on a biased understanding of appearance, functioning and behaviour, many consider disability a misfortune that make life not worth living. To promote the rights and dignity of persons with disabilities, we must dismantle social ableism and embrace disability as a positive aspect of the human experience.

Discrimination and marginalization of persons with disabilities in society is a structural problem, underpinned by ableism, a form of discrimination based on disability. Ableism is a value system based on certain standards of appearance, functioning and behaviour, which are assumed to be necessary for living a fulfilling life. Many persons with disabilities do not meet those standards, so many people assume that they have a very low quality of life, no future to look forward, and that they cannot live happy lives.

A medical understanding has historically determined social approaches to disability, privileging prevention and cure over access and inclusion, and drastically reducing opportunities for the participation of persons with disabilities. At times, ableist views were the basis for supremacist ideologies like the eugenics movement of the past century, which resulted in the sterilization of countless women and girls with disabilities around the world, and the extermination of more than 300’000 people with disabilities during Nazi Germany

The eugenics programmes of the past century have largely disappeared, but the ableist ideas behind them still influence current discussions about laws affecting normalizing therapies, assisted dying and other medical and scientific practices concerning disability.

Fighting these ideas requires awareness-raising and strengthening anti-discrimination measures, but those alone will not be enough. What we need is a cultural transformation on the way society relates to difference. This transformation requires bringing the narratives of persons with disabilities about their own lives to the centre of the debate. Embracing their experiences as a positive aspect of human diversity is the next frontier for us to conquer.

The Special Rapporteur makes recommendations for States to lead a socio-cultural transformation, implementing reforms towards the recognition of disability as part of human diversity. She highlights the need to ensure that persons with disabilities participate in the elaboration of legislative and normative changes, to ensure that the results reflect their experiences and views. These include protecting their rights to life and personal integrity in the context of medical or scientific procedures, research and experimentation, and when assisted dying is permitted.

Expert consultation

On 16 and 17 September 2019, the Special Rapporteur on the rights of persons with disabilities hosted an Expert Group Meeting on bioethics and disability in Geneva. The main objective of the meeting was to explore the relationship between bioethics and disability and to discuss areas where potential tensions could emerge, including: i) notions of normality and quality of life; ii) prenatal diagnosis and disability-selective abortion; iii) controversial and/or irreversible treatments; and iv) euthanasia and assisted suicide. A background paper on bioethics and disability was prepared to inform discussions.

The meeting was attended by experts on bioethics and/or the rights of persons with disabilities, including representatives of the Committee on the Rights of Persons with Disabilities, the International Bioethics Committee, organizations of persons with disabilities, UN entities, academics and bioethics experts. The findings of the meeting informed the Special Rapporteur's report on the same issue.