Respecting Autonomy in Health Care, Research, and All Areas of Life

To borrow the opening lines of a recent Current History piece by HPOD associate Chester Finn, Executive Director Professor Michael Ashley Stein, and Director of Advocacy Initiatives Hezzy Smith:

For millennia, societies around the world have deployed labels, devised procedures, and designed schemes to defend and legiti- mize restrictions on how persons with intellectual, psychosocial, and other disabilities exercise their fundamental human rights. These practices are often justified by paternalistic attitudes about what is in the “best interests” of a person with an intellectual disability. Under this paradigm, societies have long euthanized “invalids,” sterilized “imbeciles,” institutionalized “lunatics,” and disenfranchised “incompetents.”

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to change that paradigm. For example, as HPOD Executive Director Professor Michael Ashley Stein and Director of Advocacy Initiatives Hezzy Smith have written for the Petrie-Flom Center's Bill of Health, "the CRPD has challenged states and practitioners to reject coercive forms of care orchestrated by substitute decision-makers — be they clinicians, family members, or court appointees — in favor of modalities that preserve and privilege individuals’ direct control over their care." Indeed, the volume Mental Health Legal Capacity and Human Rights, co-edited by Professor Stein, compiles a spectrum of stakeholders' perspectives on this fundamental challenge by documenting good practices while also recognizing that there remain considerable barriers to the implementation of non-coercive models of mental health support.

Because representatives of organizations of persons with disabilities participated directly in the CRPD negotiations, including many representatives from the Global South, it's no surprise that many of the CRPD's tenets reflect the lived experiences of persons with disabilities around the world. Field research published in the Health and Human Rights Journal on the views of Kenyans who both have and work with persons with psychosocial disabilities demonstrates this linkage. Professor Stein, HPOD associate Faraaz Mahomed, Harvard T.H. Chan School of Public Health Professor Jacqueline Bhabha, and former UN Special Rapporteur on the Right to Health Dainius Pūras shine a light on stakeholders' perspectives on the  contributions that human rights-based approaches to mental health care can make. Such approaches include practices that privilege mental health service users' dignity and autonomy, emphasize prevention, and promote self-efficacy. Although the CRPD reinforces these principles, the rapid accession to the CRPD and adoption of national, CRPD-influenced mental health laws have not yet yielded into universal adherence, particularly in low-income countries.

Persons with intellectual disabilities around the world have similarly called for greater recognition of supported decision-making, which Article 12 of the CRPD protects, as a means to promote their dignity and autonomy. Many persons with intellectual and other disabilities have had their right to make important decisions about their lives taken from them, through both formal adjudications and less formal policies and practices. Finn puts his finger on the apparent contradiction underlying these restrictions:

Why do you have to take someone’s rights away in order to help someone make decisions? It just doesn’t make any sense. Rights protect people. How does taking those away help someone? I think they’re just using the disability against the person. If they didn’t have the disability, they’d say, “These are what your rights are.” What good does it do to say someone is too disabled to have rights? That’s the whole point. What they’re saying is, “You’re disabled, so you shouldn’t have rights.” People don’t come out and say it but in practice that’s what they do.

Calls for supported decision-making are slowly beginning to influence the work of professionals and academics in the field. One such area is research, where persons with intellectual disabilities face barriers to participating due to rules regarding informed consent. Professor Stein, HPOD associate Ari Ne'eman, and colleagues at Harvard Medical School, Mass General Brigham and Brigham and Women’s Hospital have recently argued in The American Journal for Bioethics that researchers and ethics reviewers should incorporate supported decision-making into research protocols in ways to prevent the exclusion of persons with intellectual disabilities.

While such promising changes may be slow to arrive, the CRPD has set in motion important changes that give advocates the tools to usher in a new paradigm.