UN disability expert warns against ‘ableism’ in medical practice

By agency reporter
March 2, 2020

During the presentation of her latest report to the UN Human Rights Council, on 28 February 2020, the UN Special Rapporteur on the rights of persons with disabilities, said: "Current developments in medical research and practice may revive eugenic ideas if safeguards for those affected are not ensured"

Catalina Devandas explained that developments in gene therapy, genetic engineering and prenatal screening experienced enormous growth, increasing our power to repair the body and prevent disease, but cautioned about "eliminating" human characteristics deemed undesirable.

"People with disabilities are genuinely concerned that these developments could result in new eugenic practices and further undermine social acceptance and solidarity towards disability – and more broadly, towards human diversity", she said.

In her report, Devandas also expressed her concerns on the impact of euthanasia and assisted suicide for persons with disabilities.

"If assisted dying is made available for persons with health conditions or impairments, but who are not terminally ill, a social assumption could be made that it is better to be dead than to live with a disability", the expert warned.

"People have the right to live and to die with dignity, but we cannot accept that people choose to end their lives because of social stigma, isolation or lack of access to personal assistance or disability-related services."

Another major concern, Devandas stressed, is the absence of persons with disabilities in crucial debates on medical research and practice. "Without their experiences directly informing those debates, narratives suggesting that living with disabilities should be prevented become reinforced and socially validated."

The Special Rapporteur explained that 'ableism' is at the root of the problem. "If the life experiences of people with disabilities continue to be undervalued, no progress will be made."

"What we need is a profound cultural transformation on the way society relates to the difference. That is a commitment to embrace disability as a positive aspect of human diversity. States must combat all forms of discrimination based on disability," the human rights expert concluded.

* Read the report of the Special Rapporteur on the rights of persons with disabilities here

* Office of the High Commissioner for Human Rights https://www.ohchr.org/EN/Pages/Home.aspx


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