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Re-thinking Autonomy

<By Michael  A. Stein*, Professor, Executive Director, Harvard Law School Project on Disability and Janet E. Lord, Professor>

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Michael A. Stein

Legal capacity, according to which law recognizes an individual’s autonomy to decide and act on her own behalf, is a fundamental human right reflected in seminal modern human rights instruments. The Convention on the Rights of Persons with Disabilities (CRPD) prominently reaffirms this core entitlement through several of its provisions. In doing so, the CRPD responds to a long and lurid history in which the autonomy of disabled persons has been eviscerated and replaced by coercive care and other practices that are decidedly inimical to community membership.

Tragically, and despite the CRPD’s rapid global adoption, legal capacity continues to be denied by states to individuals with diverse disabilities—especially those with intellectual and psycho-social impairments or multiple and complex needs—under various ostensibly protective guises. People with disabilities thus remain excluded from social opportunities presumed basic by their non-disabled peers, for example, education, employment, recreation, voting, marriage, reproductive decision-making, and entering into financial agreements.

Janet E. Lord

Janet E. Lord

Denial of the legal capacity of disabled persons is grounded in Enlightenment notions of individuals as rational and atomistic beings who express preferences of their own volition and thereby lay claim to enjoying their rights. By contrast, feminist and communitarian theories teach us that despite this received autonomy schema, we rely on and are enabled by others as part of a broader web of social networks.

Hence, whether we belong to the most vulnerable classification of person or the one alleged to be the most independent, we all draw and depend on each other when mediating the complexity of daily life.

Understanding this interdependency through a disability rights lens provides a fresh view on autonomy and related concepts central to legal capacity. In particular, the concept of supported decision-making and other enabling mechanisms reflected in the CRPD (including reasonable accommodation) recognize that socially exclusionary practices have no inherent relationship to the phenomenon of disability and stifle the development of disability-inclusive communities.

Lorraine Code points to the “autonomy-obsession” she perceives in contemporary Western thinking and the myth of the autonomous rational actor. Other feminists, such as Christine Koggel, exposes the fallacy of individuals as wholly independent agents and seeks to reassert the role of relationships and social contexts within which individuals carry out their lives.

It is well appreciated in disability rights analysis that human beings are not autonomous to the exclusion of relational ties and that agency is bounded up with the capacity to choose, with the pre-requisite for autonomy being support. Indeed, an axiomatic precept of the Independent Living Movement is not that people with disabilities desire to live apart from their families, friends and communities (although some invariably will so desire).

Rather, having appropriate support mechanisms empowers individuals with disabilities with the agency to decide where, how, and with whom to live.

painting of different african persons with disabilities

Illustration from the Advocacy Project

Embeddeness in social relations, therefore, is a precondition for empowerment and the construction of a democratic society. The reductionist perspective which emerged from Enlightenment thinking and singularly focused on one man-one vote pushes to the margins that constitutive element of society and citizenship that foregrounds participation—and measures that facilitate inclusion and engagement in political processes and the like.

Communitarians and feminists alike amplify the interrelationship between the experience of the self and relational ties with community, out of which selves are constituted. The human rights project, as informed by these ideas, must necessarily move beyond the liberal tendency to privilege rights preserving individual choice and autonomy with the resulting overemphasis evident in human rights practice, on protecting the individual from an overreaching and coercive state.

Instead, and in keeping with disability rights ideals, the human rights movement must work to support and facilitate rights not only vis-a-vis the atomistic confrontation between an individual and the State through the preservation of negative freedoms, but positively, by creating conditions within which human beings in their diversity can flourish and live in the world. This resonates with the disability rights insight regarding the socio-contextual nature of disability oppression. Barriers once identified may be dismantled, requiring not only State restraint, but State action in the form of reasonable accommodation and other measures to facilitate rights. Disability theorizing therefore offers a response to classic neo-liberalism tropes in which individual choice serves as a peremptory norm.

In sum, a human rights-based perspective of disability focuses on recognizing and then creating the conditions necessary for the individual to lead a self-determined life in community with others, thereby constituting and (re)constituting inclusive community, whilst also providing protection against State interference with individual choice and autonomy. Working to confront and break down the barriers inimical to such flourishing, including those most egregious to ensuring the participation of persons with disabilities in community, such as the denial of legal capacity, is a disability human rights project reflecting both communitarian and feminist values.

* Michael E. Stein is currently in Norway participating on a conference on the Norwegian ratification of the CRPD. Norway has made an interpretative declaration on article 12 concerning legal capacity.

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Source: Janet E. Lord & Michael Ashley Stein, Contingent Participation and Coercive Care: Feminist and Communitarian Theories Consider Disability and Legal Capacity, in COERCIVE CARE: LAW AND POLICY 31 (Bernadette McSherry & Ian Freckelton eds. 2013).

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