UN Special Rapporteur warns against ableism in medical and scientific practice

21 April 2020

In her report to the Human Rights Council on Bioethics and Disability, Special Rapporteur on the Rights of Persons with Disabilities, Ms. Catalina Devandas-Aguilar, explores how ableism is reflected in legislation, policies, customs and practices related to prevention, cure and assisted dying.

In 2019, she issued a call for feedback via a questionnaire aimed at Member States, national human rights institutions, bodies of the United Nations system, persons with disabilities and their organizations, and other civil society groups. IF responded with a submission focused on spina bifida and hydrocephalus, prenatal screening, disability-related abortion, and euthanasia and assisted suicide.

The report states: Despite the significant advances in the recognition of the rights of persons with disabilities at international and national levels, the deeply rooted negative perceptions about the value of their lives continue to be a prevalent obstacle in all societies.

These negative perceptions led to and strengthened the eugenics movement, where persons with disabilities were considered to have “lives unworthy of life”. Even today, people’s perspectives and decisions may be influenced by unconscious biases towards persons with disabilities.

In the conclusions of the report, the Special Rapporteur writes: What is needed is a cultural transformation of the way society relates to the difference of disability. That is a commitment to the recognition of persons with disabilities as equals on all terms, with the same rights and opportunities as everyone else in society.

She recommends – among other things – that States ensure that prevention strategies and interventions are respectful of the inherent dignity and rights of persons with disabilities, and to actively involve and consult with persons with disabilities and their representative organizations in all decision-making processes related to medical and scientific practice concerning them

States should also raise awareness throughout society, particularly among policymakers, public officers, service providers and the media, regarding the inherent dignity and rights of persons with disabilities, including by challenging negative stereotypes and prejudices and raising awareness of their value, capabilities and contributions.

The full report is available on the Office of the High Commissioner for Human Rights (OHCHR) website, including an Easy-to-read version.