A potentially transformative disability rights case for Guatemala, the Americas, and the world is coming before the Inter-American Court of Human Rights (IACtHR) for oral arguments in the coming months. The world over, advocates, families, journalists, clinicians, policymakers, and judges have combatted the evils of systemic institutionalization of persons with disabilities. The case of Federico Mora Civil Detainees v. Guatemala is yet another critical opportunity for the global disability community’s herculean quest to reckon with the staggering and pernicious legacy of mass disability institutionalization past and present.
The claims before the IACtHR in Federico Mora (case no. 13,524) are momentous. They span decades of human rights violations experienced by thousands of persons with disabilities who have been involuntarily committed in Guatemala’s lone public psychiatric facility, Federico Mora Hospital located in the capital, Guatemala City. The allegations include torture, exploitation, and abuse; inhumane conditions; indefinite confinement; trafficking; sexual violence; and civil death. These interrelated and compounding violations fit an all-too-familiar pattern of injustice inherent to the systematic segregation of persons with disabilities. At its core, the case highlights that adherence to the human rights obligations owed persons with disabilities is untenable when they are in forced psychiatric confinement rather than afforded community-based support.
The IACtHR’s eventual ruling in Federico Mora will not bear directly on conditions in the United States. This is because, despite being the principal architect of the Organization of American States (OAS), over whose members the IACtHR presides, the United States has never consented to the Court’s jurisdiction. Nevertheless, the case comes at a time of turmoil for the U.S. disability community, as the Trump administration rolls back a multitude of protections for people with disabilities. Specifically, the administration has targeted well-settled legal protections for people with disabilities’ right to community living, threatening a resurgence of the patterns of institutionalization on full view in Federico Mora. Thus, the IACtHR’s record of ordering sweeping, systemic redress for marginalized groups, might give hope that the global disability community is poised to make important gains, notwithstanding U.S. backsliding. The upcoming hearing (not yet scheduled) also might serve as a timely reminder that courts both in the United States and beyond have often stood on the side of individuals and communities harmed by institutionalization.
The Disability Rights Records of the Inter-American Commission and Court
Federico Mora represents an inflection point for the regional human rights system of the Americas. For decades, the Inter-American Commission on Human Rights, an autonomous OAS organ, has notably addressed issues linking disability and detention in the region. In Disabled Peoples’ International et al. v. United States (1987), for instance, the Commission accepted a petition seeking to hold the United States accountable for a bombing during the 1983 U.S. invasion of Grenada that killed 16 residents of a psychiatric facility. In Rosario Congo v. Ecuador (1999), the Commission first held a country’s authorities accountable for the custodial death of an incarcerated individual with psychosocial disability. In 2008, the Commission first adopted emergency measures on behalf of a class of institutionalized persons with psychosocial disabilities in Paraguay on the strength of reports of widespread violence, sexual abuse, and death. The Commission has also documented the harms of mass disability institutionalization throughout the Americas in its human rights reporting, including last year’s thematic report dedicated to the rights of persons with disabilities.
Further, the Commission has twice before referred cases regarding the institutionalization of persons with disabilities to the Inter-American Court. In Ximenes Lopes v. Brazil (2006), the Court addressed the custodial death of a civilly committed man with psychosocial disability. Ximenes Lopes was an important precedent for State accountability for the rights of institutionalized persons with disabilities. The Court made critical observations that two particular elements of such situations warrant “strict vigilance” by States: the inherent invasiveness of many mental health treatments and the “intrinsic imbalance” between medical personnel and patients. The Court announced its ruling a mere months before the United Nations adopted the Convention on the Rights of Persons with Disabilities (CRPD), a global treaty with expansive protections that challenge coercive care in mental health contexts. Thus, while Ximenes Lopes signaled an important initial foray for the Court, that advance was quickly outstripped by developments in the U.N. human rights system.
More recently, the IACtHR, in in Guachalá Chimbo v. Ecuador (2021), emphatically upheld the CRPD’s protections of persons with disabilities, specifically by ruling that treatment can only be administered on the basis of informed consent. In that case, a young man disappeared from a state psychiatric hospital a few days after he was admitted for treatment related to his epilepsy. The Court found that the hospital staff failed to make sufficient efforts to obtain the man’s consent and instead impermissibly relied on his mother’s consent. The IACtHR rejected the State’s claim that the emergency admission obviated the need to obtain informed consent; rather, it held that States are duty-bound even in moments of crisis. Hewing to guidance from the Committee on the Rights of Persons with Disabilities (the CRPD Committee), the expert body responsible for monitoring treaty implementation, the IACtHR held that States must make “significant efforts” to discern an individual’s will and preferences, and only if these cannot be discerned may they rely on “best interpretation of [an individual’s] will and preferences.” To ensure that States provide only consent-based care, the Court urged them to fundamentally alter systems and structures that have led to mass disability institutionalization.
The U.S. Record on Disability Rights: A Mixed Bag and Recent Backsliding
In the case of Federico Mora, the Commission’s lawyers will travel from their offices in Washington, D.C. to San Jose, Costa Rica, where the IACtHR is based, to present their arguments. In some respects, it is fitting that advocates will be leaving the United States to advance legal protections for global disability rights. Historically, the United States has been considered a disability rights pioneer, for both its legislative advances, including Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, and its culture of impactful protests, notably, the 1977 Section 504 sit-ins and the 1990 Capitol Crawl. However, the U.S. commitment to leadership on these issues internationally has come into question ever since the U.S. Senate failed to ratify the CRPD in both 2012 and 2014. That makes the United States an outlier: there are 193 State parties to the CRPD, and among U.N. member States, the only other non-parties to the CRPD are Eritrea, Tajikistan, and Tonga.
Though the failures by the United States to ratify the CRPD did not directly weaken any U.S. domestic disability legal protections, they may have portended the outer limits of political will to reinforce those guarantees. Indeed, some CRPD mandates likely exceed U.S. federal law and policy commitments. Notable among those are the CRPD’s community inclusion provisions, whereby States must “take effective and appropriate measures” to ensure persons with disabilities’ “access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community.” This provision likely implicates U.S. states with long, slow-moving waiting lists for community-based services needed to avoid institutionalized care. Although the U.S. Supreme Court in Olmstead v. L.C. ex rel. Zimring (1999) held that unjustified segregation of persons with disabilities institutions is unlawful, it left U.S. states latitude to structure their community-based service delivery schemes in ways that have, in many instances, proven ineffective. In contrast to Guachalá Chimbo, Olmstead does not require fundamental alterations to systems that historically have led to mass disability institutionalization.
Now, even this lesser protection has come under threat. The U.S. Department of Justice (DOJ) has often worked alongside civil society groups helping persons with disabilities claim their civil right to community integration through robust Olmstead enforcement. Indeed, the DOJ has played a pivotal role in closing infamous disability institutions such as Oregon’s Fairview Training Center that shut down in 2000 that were emblematic of the kinds of human rights abuses alleged on behalf of inmates at Federico Mora. However, a recent memo by the DOJ’s Office of Legal Counsel casts aside that legacy by signaling its intent to give U.S. states even greater latitude to force persons with disabilities into segregated institutional settings.
Although the DOJ memo represents a stark reversal of the U.S. government’s established position in favor of community inclusion for persons with disabilities, it is consistent with the broader retrenchment currently underway in U.S. disability law and policy. Unprecedented cuts to essential health care and support services, the systematic dismantling of decades-old federal special education oversight, and eugenics-tinged rhetoric designed to stoke fears represent several of the seismic disability policy shifts under the Trump administration. Taken together, these changes augur troubling, fundamental alterations to the policies, programs, and legal protections that persons with disabilities and their allies have worked for decades to put into place in the United States. Such developments create the specter of a return to historical patterns of mass disability institutionalization.
Seeking Systemic Redress through the Courts
Of late, the highest U.S. court has discouraged the kind of momentous, rights-affirming judgments that are capable of providing effective redress for mass atrocities. By contrast, the IACtHR has often risen to the challenge of ordering structural remedies commensurate with systemic patterns of injustice. For example, its transformative decisions have required far-reaching reforms to vindicate indigenous and tribal groups’ territorial rights in Suriname, adoption of comprehensive systems targeting femicide in Mexico, and extensive reconciliation and reconstruction efforts to recognize and reckon with mass killings in El Salvador. The patterns of mass disability institutionalization exemplified in the Federico Mora case cry out for the type of sweeping redress the IACtHR has the mettle to order.
Thus, when the IACtHR deliberates on the scope of State responsibility for the harms of institutionalization, it should be mindful of the countless examples of courageous adjudicators who have called authorities to account for the human rights abuses endemic to coercive congregate care. The Court should also be cognizant that despite the important, hard-won political and legal victories of the global disability rights movement, in many places the systems and structures that not too long ago gave rise to mass disability institutionalization lurk just beneath the surface of contemporary policies and protections. Informed by the painful lessons of history, the Court should recognize that the guarantees enshrined in the CRPD are necessary bulwarks against shifting political winds and do its utmost to affirm them.
