supported decision-making: for prime ministers only?

On July 15 I will discuss supported decision-making at IASSIDD, here is the abstract:

With the Convention on the Rights of Persons with Disabilities (CRPD) in force in a majority of the world’s countries, the necessity to frame human rights inclusively and accessibly is firmly established. The move from wanting to “fix” people by focusing on perceived deficits and medical aspects of impairment to needing to “fix” societies by reducing attitudinal barriers is underway, still haltingly in many places.

Enabling and empowering persons with disabilities is comparatively easily done on an individual basis. The negotiation of the Convention itself is a case in point on how processes can shift quite dramatically, when the meaningful participation of persons with disabilities is made possible. Importantly, a lot can be learned generally from this and related processes in how marginalized groups can and should contribute to mainstream policy and law development.

The profound challenges of the Convention’s implementation arise at the law and policy level and in its application to larger institutions. How does one shift from well-tested routines and carefully planned and well-intentioned procedures to an approach that empowers people to live independently? How does one move from cotton-wooling people to embracing their need – and right – to make mistakes, go overboard and transgress?

A core expression of the right of all persons with disabilities to equally enjoy all human rights is the right to act their legal capacity. The application of this provision (Article 12 CRPD) raises some profound challenges in enabling the decision-making of persons with disabilities.

But does it really?

Granted: there is a need for more assistance, increased support and added resources. But is there really such a difference in what we describe as supported decision-making for persons with disabilities to what people in the so-called mainstream practice every day? How, exactly, is the process of a prime minister being advised by an army of advisers different from supporting the decision-making of someone who has an intellectual impairment?

Not wanting to diminish the responsibilities of prime ministers and the complexity of some of the issues placed before them: it appears that we are all too easily pushing the decision-making of persons with disabilities into a special realm with separate rules and different standards, which are also linked to status and its attached economic might.

The idea of inclusion is not just that we enable persons with disabilities to be equal, to enjoy the same rights and freedoms – as they should have already for a long time. The challenge lies in questioning the ways in which the mainstream operates routinely and how persons with disabilities – due to being labeled “different” and “special” and “needy” – are missing out.

None of the representatives in mainstream society and leadership positions would ever think that they have support in decision-making. But very few people actually make bigger purchases or investments without consulting “someone.” The social and cultural codes that are applied here, are frequently denied to persons with disabilities, particularly in those settings where they are separated and treated “differently.”

Persons who have guardians point to the impact of their guardianship on their social and societal standing. They report feeling stigmatized and sensing the effect of their guardianship in areas of life beyond their guardianship’s scope. While well intentioned and often reasonably applied, guardianship creates and reinforces stigma. The CRPD provides an opportunity to revisit engrained routines and calls into question the most well meaning of policies.

Revising such policies, including some important legal questions that require thorough examination, a core obligation of the CRPD has to be upheld and implemented: ensuring the meaningful participation of persons with disabilities at every stage (Article 4 (3) CRPD). As the first experiences prove, meaningful participation fundamentally changes the conversation; it also improves the quality of the outcome in immeasurable ways.

Inclusion also means that we keep in mind that the Conventions is not a special set of provisions for persons with disabilities: it is firmly grounded in the human rights obligations that precede it. Importantly, the right to act legal capacity is also enshrined in the Convention on the Elimination of All Forms of Discrimination Against Women: Article 15 thereof. If one ponders the significant changes that women’s liberation has brought across the globe – and not withstanding the manifold gaps that still mar the road to gender equality – one gleans the profoundness of the paradigm shift that is encapsulated in the right to act legal capacity.

In going forward it is in everyone’s interest to ensure the meaningful participation of persons with disabilities. The obligation of the CRPD should be used to advance the quality of the debate rather than be viewed as a cumbersome obstacle. It is equally important to remember the ways in which society can push itself, e.g. changes and ongoing challenges in gender equality. The support for decision-making of those in power, e.g. prime ministers, should be our guiding light in ensuring the empowerment of persons with disabilities to make their own decisions – including: mistakes!