The UN “Report of the Special Rapporteur on the rights of persons with disabilities” is a thorough review of the work that has been done in the past year, suggesting strategies that member states can adopt to resolve violations of the rights of persons with disabilities. However, it contains a stunning paradox, as the author ends her excellent work by defending the disabled mother’s right to abort her child in the few countries where it is legal, with no mention of euthanasia of these persons in some countries (read HERE).
The Report includes a relevant chapter entitled Bioethics and disability. Our Observatory holds that the rights of persons with disabilities are an important bioethical issue that our over-developed societies should resolve (Read our statements, Ethical concerns in prenatal genetic tests. Could they be used to discriminate before birth? and In defense of Down Syndrome right to live). In our opinion, the great stigma suffered by persons with disabilities is based on the established presumption that they are living an unworthy and unhappy life. This point of view is clearly sustained in the Report with valuable and well-founded arguments. We excerpt what we consider the more relevant points in the extensive Report.
The chapter begins with a short but accurate statement: “Ableist [discriminatory] positions continue to dominate important debates that impact on the rights of persons with disabilities. Outdated notions about normality still dominate medical, legal and philosophical deliberations, including sensitive discussions related to scientific and medical developments and practice, such as prenatal screening; gene editing; withholding and withdrawal of life-sustaining treatments; the permissibility of invasive, painful and/or irreversible interventions; and assisted dying [euthanasia]. Often, these debates have taken place primarily in the field of bioethics.”
The Special Rapporteur continues with a large explanation of what is bioethics and makes an interesting analysis of the current bioethics debate on disabled people. “Much of the work in bioethics to date has been based on a thin or inaccurate understanding of the diversity, complexity, and socially embedded nature of the disability. While some bioethical writing on disability has begun to take into account the perspective of persons with disabilities, it is still overwhelmingly produced from the standpoint of outsiders. Ableist views, including the assumption that persons with disabilities are of lesser value than others, or that their lives are not worth living, dictate most bioethical discussions, from prenatal testing to assisted dying. They, therefore, fail to address the bioethical questions that actually concern persons with disabilities and their families.”
The Report returns to address the key issues of the current discrimination before birth and the eugenics proposed by the utilitarian bioethics that predominates in developed countries. “When discussing issues such as prenatal testing, selective abortion and pre-implantation genetic diagnosis, there is a shared concern among disability rights activists that bioethical analyses are often used to give an ethical justification to a new form of eugenics [read our article HERE], often referred to as ‘liberal’ eugenics. Contrary to the eugenics movement, liberal eugenics aims to expand reproductive choices for individuals, including the possibility of genetic enhancement [read our article HERE]. While there may be no State-sponsored coercive eugenics programs, in a context of widespread prejudice and discrimination against persons with disabilities, the aggregate effect of many individual choices are likely to produce eugenic outcomes. Indeed, ableist social norms and market pressures make it imperative to have the ‘best possible child’ with the best possible chances at life. Some utilitarian bioethicists have further argued that genetic enhancement is a moral obligation and that it is ethical to give parents the option to euthanize their newborns with disabilities, read our report; Bioethical debate on the principle of Procreative Beneficence.
The UN’s Rapporteur analyzes the new background created by biotechnological advances, “such as gene therapy, genetic engineering, synthetic biology and nanotechnology”, which give humans unprecedented power over nature, posing new bioethical challenges. The new scenario also gives new possibilities to ‘repair’ all types of disabilities and enhance our human nature. “There is a genuine concern that the result will not only be an increase in eugenic practices but an overall decrease in social acceptance and solidarity in relation to diversity and difference“, with a negative impact on the lives of persons with disabilities—born and unborn—says the Report (note: the underlined text is ours). The document concluded: “An existential worry lies beneath these concerns about bioethics and eugenics. When bioethics addresses the moral permissibility of using a particular medical or biological intervention to prevent or treat disability, it is also judging the quality of life and, ultimately, the value of disabled persons.”
In this regard, the author remarks on the important role of bioethics committees and the concern that they do not include disabled members: “The increasing proceduralism in bioethics, as practiced by bioethical committees, is transforming ethics into an ‘instrumental function’ rather than a process of critical reflection. As such, ethical debates are reduced to an application of rules to situations in an oversimplified and legalistic manner, without a critical reflection of the role of human rights in bioethics and the power dynamics under which decisions are made”, says the author.
In the following chapter, Contemporary challenges, the Rapporteur enters the field of applied bioethics, demonstrating great knowledge of the current reality of disability, about which we excerpt one point.
The Report tackles the problems that parents of disabled persons have to face. For example, “Many parents of children with disabilities experience enormous pressure towards a cure. There is a growing number of interventions aimed at ‘fixing’ a child’s impairments or, at least, making them less apparent to the outside world. Many of these interventions are invasive, painful and/or irreversible, and do not achieve any real benefit for the children, because they are performed with the sole objective of making them appear aesthetically normal and better accepted within society (for example, limb lengthening in children with restricted growth or cosmetic facial surgery in children with Down’s syndrome). Some interventions are potentially harmful, such as stem cell therapy, antifungal medications and chelation therapy for autistic children. There are also a number of surgical procedures and hormonal treatments intended to inhibit the growth of children with severe impairments, including hysterectomy and oestrogen treatment (see A/72/133)”.
Euthanasia is also approached by the UN report on persons with disabilities
The Report recognizes the negative effect on this collective but fails to mention what is happening in countries where euthanasia has been legalized (read our articles One in three Dutch doctors reported being willing to euthanize the mentally ill, HERE and HERE), accepting that it is a free choice for the disabled person [to request euthanasia] “on an equal basis with others”. “From a disability rights perspective, there is a grave concern that legalizing euthanasia and assisted suicide could put at risk the lives of persons with disabilities. If assisted dying is made available for all persons with a health condition or impairment, regardless of whether they are terminally ill or not, a social assumption might follow that it is better to be dead than to live with a disability.” The report, therefore, recommends that “[w]here assisted dying is permitted, implement strong measures to protect the right to life of persons with disabilities on an equal basis with others” (read our article on the issue HERE).
Wanting to make clear the Report’s opposition to pro-life movements, the author advocates for the mother’s right to abort, a position that directly contradicts the otherwise excellent work because, in our opinion, it favors discrimination, denying the inalienable right to life of the disabled.”States can implement a number of measures to guarantee the rights of persons with disabilities while considering these issues, including awareness-raising; adopting rights-based prevention policies; respecting the personal autonomy and integrity of persons with disabilities; and taking concrete measures to protect their right to life. When advocating for change on such issues, disability rights advocates often find themselves in an uneasy alignment with various anti-choice [pro-life] groups. The Special Rapporteur wishes to depart from those positions and emphasize that “the universality, indivisibility, interdependence and interrelatedness of human rights should inform all such discussions, which in no way aim to roll back rights to protect autonomy and self-determination that have been won.” also says “…solutions must not compromise the right of all women, including women with disabilities, to decide whether or not they want to continue with a pregnancy“.
We recommend reading the Report, it is undoubtedly the result of relevant fieldwork. But we are concerned that given the aforementioned inconsistencies, it may hurt the sensitivity of people with disabilities or their families, producing an effect contrary to what is undoubtedly intended.
Bioethics Observatory – Institute of Life Sciences
Catholic University of Valencia