On supported decision-making and disability

So, I wrote a post a while ago about the right to vote for cognitively disabled persons. In this post, I made reference to the support-based paradigm that is becoming predominant in disability rights literature and human rights practice. However, I’m conscious I didn’t go into much detail about support-based theories or what they entail. This blogpost will set out what the support-based paradigm is and what I personally believe are its merits and drawbacks.

What is the support-based paradigm anyway? It’s probably easiest to define what constitutes ‘support’ with reference to what it is not. Throughout history, cognitively disabled persons have been subjected to substitute decision-making regimes, wherein a third party is given the ability to act in the perceived ‘best interest’ of the disabled person as opposed to what the disabled person actually wants, or their expressed preferences.

Support-based theories of rights turn substitute decision-making on its head, arguing that substitute decision-making procedures discriminate against disabled persons based on their capacity, justifying a level of paternalism that we wouldn’t allow for anyone else. The basic principle driving support-based paradigms is that the expressed preferences of the disabled person should always be respected.

 However, cognitively disabled persons may not always be able to determine and enact their expressed preferences without the help of other people. This is where support comes in. Support often means taking concrete measures to help disabled persons come to their own conclusions about how to live their lives and to put those ideas into practice. Supportive mechanisms are reasonable accommodations put into place to ensure that disabled persons can do this. For example, it may be necessary to put information in more accessible language.

Another example, drawn from my arguments about voting, is having someone helping a disabled person in the voting booth. This support-giver can help a cognitively disabled person understand the options available to them and therefore make it so that the disabled person can vote and express their political preferences.

The driving premise behind support-based rights theories is using mental capacity as a reason that people can’t exercise legal capacity (that is, the ability to make legal decisions for oneself) is discriminatory. The determination of mental capacity is not itself value-neutral, and there is evidence to suggest that capacity is malleable. Acting as though capacity is fixed may serve to create self-fulfilling prophesies about a person’s capacity. This can be seen through the practice of institutionalization, which has been proven to delay disabled persons’ language acquisition and critical thinking abilities.

Support-based rights theories embrace a universal model of legal personhood, which basically just suggests that everyone has the right to make decisions for themselves, irrespective of their actual or perceived capacity.

Prima facie, the support-based paradigm makes a lot of sense. We want disabled persons to be able to make their own decisions, and subjecting them to paternalism that we would not subject others to on the basis of their disability seems quite dubious from a human rights perspective. Human rights instruments generally regard discrimination as any arbitrary distinction based on a protected category, such as disability.

However, the support-based paradigm is not without its detractors, and I myself am not sure to what extent I’m willing to adopt a support-based paradigm. I do agree that capacity judgments are arbitrary, but I also think that legitimate fears of self-harm may validate paternalism in certain cases. So, I’ll discuss some of the contentious bits of this paradigm here.

  1. Support-based paradigms may subject disabled persons to manipulation. Supported decision-making procedures may mirror ‘facilitated communication’ strategies that led researcher Anna Stubblefield to sexually exploit a cognitively disabled person she was working with. While I do think there are fears of exploitation, I think these fears are way worse in an environment in which we don’t respect the expressed preferences of disabled people. For example, in an effort to act in disabled persons’ ‘best interests,’ people often subject cognitively disabled persons to abhorrent practices such as forcible medical procedures and sterilization. It would seem that the problem of manipulation is not unique to a supportive environment, nor is it exacerbated by it. Bad guardians can be just as harmful as bad supporters. This is why the fear of manipulation doesn’t seem particularly acute to me.
  2. Support-based paradigms might expose people to risks of self-harm. This counter-argument seems a lot more compelling. For example, we don’t want to let a person experiencing psychosis enact their expressed preference to jump from a seven-story building. In my work, which deals with political capacity, this fear doesn’t seem to be that bad. However, when we extend the support-based paradigm to all legal decisions, it becomes a bit dubious.

    One way that I do think the support-based paradigm is problematic is that it seems to homogenize cognitive disability—that is to say, it treats mental health conditions in the exact same way as intellectual or affective impairments. Because it does homogenize the two, it’s hard for us to differentiate appropriate levels of intervention. For example, because we view acute episodes of mental illness to be a lapse in decision-making capacity rather than, for example, a loss of one’s sense of self, it becomes impossible to justify creating limitations on mental health patients’ choice or allowing them to implement self-binding directives to guide their future treatment.

    I’m not sure about how I feel about cases of self-harm. Luckily, my work concerns mostly political decision-making; however, I would like to explore the implications of support more generally. While it is true that we want to stop patients experiencing psychosis or another acute mental health crisis from engaging in seriously risky or damaging behavior, we also don’t want to subject patients to inhumane practices such as forcible restraint, which kills countless mental health patients yearly, or forcible medication that might have serious side effects to which a patient would not want to consent. It’s difficult to draw a brightline at which I think intervention is justified. I’ll have to think about that a lot more in any case.

I think that appropriating certain features of the support-based paradigm can help us build a more inclusive democracy and to give cognitively disabled persons a degree of autonomy that they have historically been denied. However, there are serious risks with universally adopting a support-based paradigm, such as cases of self-harm. Because of this, it might be that we need a paradigm that allows us to make capacity judgments in certain cases and not in others. Or it might be that we need a different, more fair metric for determining when paternalism is justified altogether.

The jury’s out on this one for now. But I do think that the support-based paradigm brings to light some vital insights and has important consequences for the treatment of disabled persons.

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