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Legal Capacity and Persons with Disabilities’ Struggle to Reclaim Control over Their Lives

The Health Law, Policy, Bioethics, and Biotechnology Workshop provides a forum for discussion of new scholarship in these fields from the world’s leading experts. Though the Workshop is typically open to the public, it is not currently, due to the COVID-19 pandemic. However, many of our presenters will contribute blog posts summarizing their work, which we are happy to share here on Bill of Health.

By Matthew S. Smith & Michael Ashley Stein

Persons with disabilities face an ongoing struggle to reclaim power and control over their lives.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is an important tool in this struggle.

In mental health care settings, 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.

As the first international human rights treaty to be developed with civil society stakeholders participating directly in the negotiations, the CRPD is an extraordinary human rights instrument both in terms of its process and substance.

However, the rapid accession by UN member states to the CRPD (182 States parties and counting) since its adoption in 2006 has not been without contention. It has spurred debates around the issue of legal capacity, or the capacity to be recognized as a “legal person” before the law. This concept incorporates both the holding of rights and duties (legal standing) and the actual exercise of those rights and duties (legal agency).

The recognition (or lack thereof) of legal capacity can have important implications, including affecting the right of people living with psychosocial disabilities to make decisions about treatment, to live independently, to enter into contracts, and more.

Two recent disappointing decisions from the European Court of Human Rights allowing states to disenfranchise persons with intellectual disabilities pursuant to court-ordered legal capacity restrictions illustrate this.

Resistance to grant persons with psychosocial disabilities capacity to steer the course of their lives stems from varying pragmatic, ethical, and other reasons, but power and control are common factors.

“A reluctance among duty-bearers to relinquish power over the lives of those affected is a significant driving factor behind these concerns,” scholars note in the introduction to Mental Health, Legal Capacity, and Human Rights. “This power, which has undoubtedly been left open to abuse, requires urgent and systematic checking if the abuses of the past are not to be repeated.”

That power and control would be central to the ongoing debates about CRPD Article 12, General Comment No. 1, and their proper implementation, should come as no surprise, as they are central themes running through countless disability rights struggles.

Our recent work at the Harvard Law School Project on Disability (HPOD) underscores this fact. For example, last spring, in a case where HPOD intervened as amicus curiae, the Inter-American Court of Human Rights recognized that “medical staff charged with the care of patients exercise strict control or dominion over the persons subject to their care.” The court ruled emphatically that psychiatric hospitals must respect persons with disabilities’ right to receive care based on informed consent.

Indeed, in the poignant words of an advocate for Massachusetts to establish a commission to investigate the lurid legacy of state institutions for persons with disabilities:

“Our psychiatric system of today is relentlessly bound up in repeating past mistakes in the name of progress at least in part because it never slowed down long enough to truly listen. Step one is to cease using our power over people to control and silence them, and to make the shift toward using our power under the most silenced among us so that the wisdom they’ve gained through survival can finally be heard. That is what this commission seeks to do.”

Capacity assessments are sometimes weaponized to restrict persons with intellectual disabilities’ right to sexual expression. Similar capacity assessments are also deployed systematically to deprive persons with intellectual disabilities’ of their parental rights. More recently, the travails of Deacon Tony Phillips, who secured his release from a rehabilitation facility this summer, starkly bring home how institutions designed to provide care can too easily turn to coercion and control.

While to date the interpretations of the CRPD’s provisions offered by the Committee on the Rights of Persons with Disabilities do not provide sufficient guidance to resolve the thorniest of legal capacity controversies, the CRPD has put a powerful tool in the hands of persons with disabilities.

“Supported decision-making,” as our colleagues recently wrote, is an important alternative to traditional mechanisms of restricting legal capacity that is “meant to enable individuals with [disabilities] to secure the assistance they may want in making their decisions.” Rather than remove decision-making authority from people perceived to lack the capacity to do so, supported decision-making “helps to legitimize and dignify the ways that many individuals with [disabilities] seek assistance with decisions and can help to train family members and others to embrace the roles of supporters and enablers of decision-making, rather than to act as gatekeepers.”

Like so many things, ultimately the CRPD’s provisions on legal capacity will only help to tilt the balance of power in persons with disabilities’ favor if advocates devise strategic ways to apply them. Groups like the Massachusetts Advocates Standing Strong’s Supported Decision-Making Task Force give us hope. It is one of the few self-advocate-directed initiatives that we are aware of that aims to translate supported decision-making from a treaty-based human right into a lived reality. After all, HPOD was founded on the notion that human rights can change lives, and we are eager to see what exciting things advocates have in store for us next.

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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