For the last fifteen years Eric Rosenthal has held countries accountable to international human rights law for the inhumane “medical treatment” and segregation from society of people with mental disabilities. Eric established Mental Disability Rights International as the first advocacy organization dedicated to applying international human rights standards to the treatment of those with mental disabilities across the globe. By documenting the atrocious human rights violations against people with mental disabilities, he has brought unprecedented international attention to the rights of this population. Eric’s work has shifted the entire framework within which human rights organizations and governments think, work, and respond to the concerns of people with mental disabilities. This innovative advocacy helped lay the groundwork for the new United Nations Convention on the Rights of Persons with Disabilities, adopted by the UN in December, 2006.
The New Idea
Eric has changed how the international human rights movement views the treatment of people with mental disabilities—including intellectual, developmental, and psychological disabilities. Disability had traditionally been seen as a health or social welfare issue. Throughout the world, people with mental disabilities and mental illnesses have been subject to forced treatment to be “cured” or were detained in psychiatric institutions to give them “asylum” from society—despite the fact that these individuals may have chosen to be part of society. Over the past three decades, people with mental disabilities have proven that, with some support, they can live in the community. Yet these advances were largely overlooked by the international human rights community. Following his groundbreaking study in 1993, Eric introduced the application of international human rights principles to the institutionalization of people with mental disabilities and argued for a right to community integration under international law. Eric founded Mental Disability Rights International (MDRI) to advocate for the international recognition and enforcement of the basic human rights of people with mental disabilities. By exposing human rights violations on a large-scale, and creating political accountability through international shame, Eric and his colleagues at MDRI have introduced a real cost to countries for their inhumane treatment and torture of this population. These efforts have now been vindicated in the language of the UN Convention on the Rights of Persons with Disabilities, which has recognized that proper treatment and community integration of people with disabilities should not vary by country. These are now rights articulated in universal law.
Through the international human rights framework, Eric links the improvement of mental health services with broader questions of social justice and nondiscrimination relating to the full spectrum of rights set out in international instruments. From a human rights perspective, people are entitled to live and receive care in their communities not because it is more efficient, but because all human beings develop their identities within social contexts, and have rights to work, study, and be with family and friends. People with mental disabilities are often denied the right to work outside the home, marry, or have children. Eric is calling not only for care to be provided within the community, but also for the planning and decision-making powers to be transferred to individuals with disabilities themselves. Ex-patients of psychiatric institutions, people with mental disabilities, and their family members can and should become integrally involved in the policymaking and programming decisions to achieve full participation in society and the full exercise of their inherent human rights.
The Universal Declaration on Human Rights, the International Covenant on Civil and Political Rights, and the International Covenant on Economic, Social and Cultural Rights clearly state the rights that all human beings should have access to. Since these conventions were adopted, however, these rights are not applied to individuals with mental disabilities. People with mental disabilities face degradation, stigmatization, and discrimination. People with mental disabilities are routinely confined against their will in institutions, and deprived of their freedom, dignity, and basic rights. Abuses in these institutions are sometimes horrifying, including the case of a twenty-one-year-old man with an intellectual disability tied to a metal crib for eleven years, or a seven-year-old girl with fluid in her brain left untreated because authorities claimed “she will die anyway.”
People with mental disabilities are particularly at-risk of human rights violations. Historically, inflicting significant pain against psychiatric patients in the name of treatment has not been classified as torture. The European Court of Human Rights has established the doctrine of “medical necessity” justifying extremely painful treatment where a professional deems the practices as “necessary” treatment. As a result, international human rights organizations have not acknowledged some horrendous treatment practices in psychiatric institutions as human rights violations until recently. For years, they focused only on the misuse of psychiatry to institutionalize political dissidents. Such organizations neglected to note the same conditions for the mentally disabled. For example, electroconvulsive therapy (ECT), also known as electroshock therapy, is a psychiatric treatment that electrically induces seizures in patients to treat severe depression and other mental illnesses. In Romania, Amnesty International studied a psychiatric hospital using ECT without anesthesia or muscle relaxants, potentially inflicting intense pain, broken jaws, and cracked vertebrae during the induced seizures. Amnesty International said the treatment raised issues of medical ethics and consent but did not constitute human rights violations because the psychiatrists in Romania were making a good-faith effort to provide medical care.
Throughout Eastern Europe and Latin America in particular, MDRI found widespread reliance on closed custodial facilities for people with mental illness, with few community-based alternatives. As a result, people who are fully capable of living in the community with medication and/or assistance are instead segregated from the rest of society for much of their lives. People with mental disabilities who live outside of institutions often remain imprisoned by social isolation, sometimes from their own families. They are excluded from educational programs, and face attitudinal barriers to employment both because they have not received the education and training and because of discrimination and prejudice. To remedy such abuses requires both legislative change and reform of community service and support systems.
For the last fifteen years, MDRI has pursued three main strategies. The first is to advocate for the creation of improved international law guaranteeing the rights and protection of people with mental disabilities. The second is to use existing international law to end human rights violations in individual countries. And the third is to empower communities to develop a sustainable advocacy movement. Ten years before the UN began working on the Convention for the Rights of People with Disabilities, MDRI was raising public awareness and arguing that many sanctioned medical treatments of the mentally disabled in psychiatric institutions constituted human rights violations. An instrumental force in shifting world understanding, Eric was also personally engaged in the drafting of the Convention and had MDRI staff present for the day-to-day work. Along with other organizations, but in great part due to the broad influence of Eric’s work, the Convention was adopted in December, 2006 and entered into force as binding international law in May, 2008.
In twenty-five countries, Eric has used a country-based approach to shame nations into ending human rights violations against people with mental disabilities. MDRI uses human rights precedents from existing international law to highlight violations. This includes the International Covenant on Civil and Political Rights that provides in Article 7 that “no one shall be subjected to torture or cruel, inhuman or degrading treatment” and the 1991 UN General Assembly Resolution 119, Principles for Protection of People with Mental Illness which states that “every person with mental illness shall have the right to live and work, as far as possible, in the community.”
While intending to stay in a single country for many years, MDRI spends the first two to three years gathering data for the human rights violation report and cultivating future leaders of the disability rights advocacy movement. MDRI assesses the human rights situation on the ground by talking with stakeholders including ex-psychiatric patients, people with mental disabilities, family members, human rights lawyers, mental health professionals, and government agencies. MDRI also hosts training and advocacy workshops. Bringing in advocates who are ex-patients has been particularly impactful because it shows that they can be a part of society despite having been institutionalized and can talk about their experiences despite the stigma attached to them. Eric and local activists conduct monitoring and evaluation missions in psychiatric institutions, mental retardation facilities, prisons, jails, and orphanages. Through these joint investigations, they develop a strong understanding of the local situation, and more importantly, begin to identify individuals willing to take a leadership role in local advocacy efforts.
After data collection, MDRI releases a report documenting the human rights violations to create the international and domestic press coverage and public outcry to spark a reform movement. MDRI often presents the report with an ex-patient, family member, and mental health professional to ensure that the public knows who to turn to in the future. This provides legitimacy to the report because it is not simply an American coming into a country and telling them what they’re doing wrong but instead is seen as collaborative work. These reports have prompted governments to end numerous human rights violations against people with mental disabilities, adopt legal protections, and close abusive psychiatric facilities. One report induced the Paraguayan government to restructure its entire mental health system, and another persuaded the Mexican government to close an abusive psychiatric facility and hire an MDRI adviser to create its first government-funded, community-based mental health programs. Still another led to new Hungarian disability rights legislation that included the formation of a human rights ombudsman system to protect people in institutions.
Once a report is released, MDRI steps back to spotlight emerging local leaders and encourage a sustainable grassroots advocacy movement. Since the public gains awareness through the media coverage, potential partners often come forward quickly. In order to leverage and manage this momentum, having on-the-ground staff is imperative, either as part of MDRI or another organization. These staff help coalesce the movement, develop allies among the different constituents, push for government reform policies, develop community reintegration services, and keep the media focused on the issue until MDRI feels that their presence is no longer needed.
Across Eastern Europe, MDRI incubates local activist leaders, typically ex-patients or people with mental disabilities. In countries like Turkey, the local staff spin-off their own independent disability rights organizations, while in countries like Kosovo where it has been more difficult to develop funding, there are still local staff present eight years after the initial report was released. In Latin America where there is a strong human rights movement open to economic and social rights advocacy, existing human rights organizations have incorporated the ideas of MDRI into their core advocacy work. In order to influence as many countries as possible, MDRI remains in a country only until the movement is capable of doing advocacy on its own. This decision is usually based on having at least one independently funded organization, five to seven local leaders, and a critical mass of trained volunteers. After they leave, MDRI continues to collaborate with these organizations and organizes advocacy workshops.
Eric sometimes relies on political leverage to apply pressure to offending nations. For example, MDRI worked in Turkey, taking advantage of the country’s bid to join the European Union, and published a report that exposed the abuse of electroshock without anesthesia in numerous psychiatric institutions. The European Committee for the Prevention of Torture held the Government of Turkey accountable for these abuses as a violation of the Convention Against Torture. As a result of MDRI’s effort, Turkey has abolished this inhuman practice that affected some 15,000 patients per year.
MDRI is also working to create financial consequences to offending countries including by redirecting the flow of aid funding. When the U.S., the European nations, the United Nations and The World Bank make their foreign aid and trade decisions, Eric is pushing them to consider a nation’s care of its mental patients along with more well-established human rights issues such as political freedom, torture, and child labor. By educating foreign donors and development agencies, MDRI shows how they are misusing funds when they put them into crumbling psychiatric institutions. Instead Eric guides them to invest in community reintegration services and advocacy work.
Currently Eric and MDRI are at a crossroads. Eric has succeeded in fulfilling his original objective of transforming international human rights to include mental disability rights with the adoption of the Convention. Now Eric’s goal is to spread globally, particularly into the U.S., Asia, and Africa, using the Eastern European and Latin American countries as demonstration sites. His strategy is to appeal to a broader population by using universal principles and interests to make disability rights a top issue on the human rights agenda. Eric is also working to transform mental health services by utilizing the Convention against Torture to hold the most serious abusers accountable to criminal law. By making disability rights universally understood by the public and MDRI well-known to governments, Eric intends to prevent abuses before they even begin.
Eric’s interest in mental disabilities was influenced by the fact that his grandmother and other family members were diagnosed with manic depression. In college, he studied to be a psychiatrist. While volunteering at a psychiatric hospital, Eric was struck by the lack of humanity in the treatment of psychiatric patients and the disempowering impact of being labeled as “mentally ill.” He decided to no longer pursue a career in mental health care.
After graduating from college in 1985, Eric went to Israel to volunteer for the local peace movement. He was deeply inspired by Israeli and Palestinian human rights lawyers and realized there would never be a true reconciliation if basic human rights were not protected. Returning to the U.S. to attend law school, Eric then took a job as a paralegal at an organization working to advance the civil rights of people with mental disabilities. There he developed his civil rights framework toward mental disability that would later inform his human rights approach. Through this experience, Eric found his passion—empowering communities of people with mental disabilities by working to protect their rights.
In the 1990s at Georgetown University Law School, Eric investigated the relationship between mental disability rights and international human rights. He realized that no one was making connections between the two. Yet Eric knew there were several important and overlooked protections under international law that were applicable to people who suffered from mental disability. For Eric, it was so simple to make the link; he thought it would be easy to show the international community and human rights organizations that they had simply overlooked it. But as he began, he realized just how deep seated the discrimination and prejudices against the mentally disabled were. In 1992, on a visit to Mexico for another human rights organization, Eric took the initiative to visit the Ramirez Moreno psychiatric institution in Mexico City. The horrors he witnessed at this facility convinced him there was a desperate need to address disability rights as a human rights issue. Eric decided to use his experience working in human rights to create a new advocacy organization to fight this problem on a worldwide level. He founded MDRI in 1993.
Since then, Eric and his colleagues at MDRI have been recognized by organizations and through awards for pioneering the field of international human rights advocacy for people with disabilities and bringing tremendous international awareness to their concerns. Some of these awards include a Ford Foundation Fellowship in Public International Law (1991), Echoing Green Public Service Fellowship (1993), Kornfeld Fellowship in Bioethics (2000), Mental Health Association of New York’s Humanitarian Award (2001), Thomas J. Dodd Prize for International Justice and Human Rights (2007), the American Association of People with Disabilities Henry B. Betts Award (2008), and the Human Rights Award of the American Psychiatric Association (2009).
Eric is Vice-President of the U.S. International Council on Disability, the U.S. Affiliate of Rehabilitation International and Disabled Persons International. He served on the International Watch Advisory Committee of the U.S. National Council on Disability, and consults to the World Health Organization, UNICEF, and the UN Special Reporter on Disability.