By Ariel Simms, J.D. ’16
This Winter Term, I had the opportunity to work with the Centre for Mental Health Law & Policy (Centre), a nonprofit disability rights organization based in Pune, India. The Centre is dedicated to ensuring implementation of the Convention on the Rights of Persons with Disabilities (CRPD), a United Nations treaty that has been signed and ratified by many countries, but unfortunately, not by the United States. The treaty requires that all persons with disabilities, including mental disabilities, be treated with respect, dignity, and on an equal basis with others.
My interest in working with people with disabilities came from my experience working as a Mental Health Counselor in a locked, psychiatric unit of a hospital. For two years, I counseled patients with serious mental illness under a paradigm of substitute decision-making. As a professional, this paradigm was extremely frustrating, as it considered only the putative “best interests” of the patient, without actually consulting the patient regarding his or her own preferences. Rather than making decisions for the patients on our unit, I wanted to help our patients make their own decisions, including treatment decisions, envisioning the role of service providers as helpful aides in decision-making, rather than as substitute decision-makers. Such a paradigm is called supported decision-making and is mandated in human rights law by the CRPD. My professional experience as a counselor led me to come to law school to become an advocate on behalf of those with mental illness, as well as to empower those living with mental disabilities to advocate for themselves.
Having no prior experience with Indian domestic law, I began my clinical work at the Centre with background research, including India’s existing mental health law and a new Mental Health Care Bill introduced in Parliament in 2013. It was this new bill that, if passed, would bring essential tenets of the CRPD into the Indian mental health care context. India though, like many countries that have ratified international human rights treaties, has a gap between what international law mandates and the realities of its domestic laws.
I assisted the Centre with a project around supported decision-making for persons with mental disabilities. In India, there are several barriers that keep caregivers and service providers from implementing supported decision-making, including: a lack of awareness about the CRPD and human rights obligations, a lack of understanding about what supported decision-making is, cultural norms and mores of power among service providers and caregivers, and persistent stigma surrounding mental illness. Although impossible to address any of these barriers sufficiently in three weeks, I had the unique opportunity to address at least some of them by drafting two separate guides on supported decision-making: one for caregivers and family members, and one for service providers. In order to create the most helpful guides, I also became more familiar with the realities of mental health care on the ground through extensive discussion with my colleagues at the Centre, in-person interviews with local psychiatrists, and in-person and group interviews with Indian caregivers.
From these conversations, I was able to gather that many service providers and caregivers have never heard of the CRPD or even think about human rights in their day-to-day lives. Many presume that the service user cannot ever make his or her own decision, so just make the decision for that person instead. In addition to substitute decision-making, service providers and caregivers also regularly engage in more serious human rights violations, including: practices of covert medication (e.g., hiding medication in the service user’s food or drink without his or her knowledge), giving informed consent on behalf of the service user, not seeking any informed consent for treatment (including for electroconvulsive therapy), taking away the person’s property, taking away the person’s liberty, and various other violations. On top of these, some families would just place their family member into one of India’s infamous mental hospitals and then just move on with their own lives.
My experience in India really brought home the gap between what law says we should do, and the realities of enforcing those laws on the ground, especially on a topic as stigmatized and oft swept-under-the-rug as mental illness. Human rights law in particular is often cast as aspirational, rather than as something that can immediately be recognized and enforced. Despite these challenges, I think this clinical experience helped me begin to bridge this gap between aspiration and reality in India, moving closer to the ultimate goal that all those living with disabilities will be able to lead lives characterized by dignity, equality, and autonomy.
I would like to sincerely thank and commend all the wonderful advocates at the Centre for Mental Health Law & Policy who work hard every day to advance disability rights in India and who not only helped me with my project, but also with navigating a new country, and so much more. Special thanks to Dr. Soumitra Pathare, Professor Jaya Sagade, and Professor Michael Stein for their supervision and support throughout this project. I would also thank the Harvard Project on Disability, the Office of International Legal Studies, and Cravath, Swaine & Moore LLP for their recommendations and financial support.