<Written by Janos Fiala-Butora, S.J.D. candidate, Harvard Law School>
Article 12 is one of the most controversial provisions of the Convention on the Rights of Persons with disabilities. It requires states to recognize that persons with disabilities enjoy legal capacity on an equal basis with others. In other words, every person should have the right to make his or her own decisions.
The CRPD, however, does not explain what this means for persons with severe disabilities. Governments (and many academics and legal practitioners) argue that at least some persons are unable to make decisions even with the highest degree of support. If decisions are not made on their behalf by others, they might starve, suffer from untreated illnesses, and eventually even die. Therefore, guardianship needs to be retained in some limited form to help these persons.
Their opponents emphasize that the CRPD does not allow for exceptions. Its text applies to all, including persons with severe disabilities, who therefore also have to be able to exercise their legal capacity. If they cannot do it in a conventional way, the government’s duty is to provide them support. If they have a severe disability, they require a very high level of support, which can sometimes reach 100% support. Therefore, guardianship needs to be abolished.
Both these positions make valid points. For one, it is hard to imagine how persons with very severe disabilities can besupported to make all of their decisions. It is one thing to say that the CRPD requires 100% support, but quite another to convincingly explain what this means, and show how it works in practice. The skills of persons with intellectual disabilities are often underestimated, and they are capable of amazing things if given the opportunity and support. New ways of accommodating people and communicating with them might be found if the system is pushed hard enough. That, however, still falls short of proving that everybody is able to make all decisions with support. This has not been demonstrated yet, and it would be folly to base policy on wishful thinking rather than evidence.
On the other hand, retaining guardianship as a last resort has its own problems. Guardianship is notoriously overused, therefore there is a great chance that it would be applied also to persons who do not need it, who are able to make decisions with support. Proponents of guardianship have also not demonstrated how guardianship can be curtailed only to exceptional situations, for those persons who truly need it. As academic research shows, attempts at reforming and limiting guardianship have always failed.
None of the two positions described above are perfect. Abolishing guardianship would help a lot of persons with disabilities – while also harm a few with severe disabilities who could not make some of their decisions with support. Retaining guardianship would help these persons with severe disabilities, but harm a large number of persons with moderate disabilities – they could easily find themselves under guardianship, even if they do not need it.
There is, however, a third, so far unexplored, solution: we might accept that some persons are not able to make some decisions with support, and substituted decisions have to be made on their behalf. Yet this does not necessarily mean that guardianship needs to be retained. Substituted decisions can be made in a different way as well. For example, the supporters can be obliged to provide as much support to the person as possible – but if, after all has been tried, the person is unable to make a decision, the supporter can be entrusted to make a decision on their behalf.
This system has the uncomfortable consequence of conflating support with substitution, but it has in fact several advantages over guardianship. It only allows for substituted decisions to be made if the disabled person is unable to state a preference. If he or she is able, that wish takes precedence over whatever decision the supporter would like to make (with any safeguard to possibly overturn such a wish, as it is applicable (or not) to all substituted decisions). This strengthens the position of the supported person, and should minimise abuses by the supporter. Even stricter requirements can be imagined, such as court approval of any substituted decision by courts.
The stricter the safeguards, the less likely abuse will take place, and the more cumbersome the system becomes for persons with very high support needs. Every country can found the balance appropriate for it, there is no one size fits all solution. But the baseline seems to be clear: some substituted decisions will need to take place – but that does not mean we need to retain guardianship.
Janos Fiala-Butora is writing a PhD on the legal capacity of persons with disabilities.