Supported decision-making is a revolution

This is the second of two posts about the UN Convention on the Rights of Persons with Disabilities and ‘supported decision-making’. The first one is here. In that post I argued that calling supported decision-making revolutionary risks exaggerating the differences between people with disabilities and others, and that this might result in stigma. I said that supported decision-making ‘boils down to communicating with someone, respecting them, and listening to them. That is not a revolutionary idea. What would be revolutionary would be if it consistently happened’.

In this post, I talk about why support actually happening might have revolutionary implications. Hopefully, I manage to do so without falling into the stigmatising trap that I warned of in the other post. So it’s important to start by stressing an important point: everything that follows assumes that there are no intrinsic blocks to any person with disabilities being supported to make decisions. In other words, this post assumes that disability itself never makes it impossible for someone to be supported to make decisions. Whether or not that is true is an important question, and there has been debate about it; but it is not what I am talking about here.

To see the revolutionary implications of supported decision-making it helps to do some non-ideal theory. A contrast will help. Ideal theory, according to Rawls, ‘assumes strict compliance and works out the principles that characterize a well-ordered society under favorable circumstances’ (Theory of Justice, 216). There is nothing necessarily wrong with that. As Rawls says, it lets an objective or aim be worked out. A great strength of the UN Convention and the surrounding literature is that so much is done in this ideal mode. Giving some, however loose, description of a world in which there would be justice for people with disabilities makes it easier to talk about the failings of the present.

After ideal theory has worked out where we are going, though, it is still necessary to work out how we get from here to there. In many ways, this is the real question. There’s an analogy here with Kierkegaard’s ‘little Socratic secret: that the crux is exactly the relationship of the subject’ (Concluding Unscientific Postscript, 33); and for this crux, we need non-ideal theory. As the post-legislative scrutiny of the Mental Capacity Act 2005 shows, ‘strict compliance’ with the law cannot really be assumed. More importantly for this post, though, sometimes conditions are not favourable.

I get to a particular unfavourable condition in a few paragraphs; but, to see why it’s important, first we need to reconstruct some of the justification for supported decision-making. There are two possible strands of justification: the instrumental and the constitutive. The instrumental justification would be something like ‘being supported to make their own decisions leads to better outcomes for people than having their decisions made for them’, where ‘better outcomes’ is measured either objectively or according to the person’s own aims.

Hardly anyone justifies supported decision-making on instrumental grounds. Even relative conservatives, who believe that it might sometimes be appropriate to make a decision for someone instead of supporting them to make their decision, don’t think that ‘unwise decisions’, where someone else could decide better, by themselves justify abandoning support. If support is justified even when the person’s decisions lead to worse outcomes, then better outcomes are not the rationale for support.

That leaves the constitutive justification for support. That is something like ‘it is better to be someone who makes decisions about the things that affect them than someone who doesn’t’. Now, that might look self-evident; but, like most things that look self-evident, it is probably impossible to meaningfully justify.

Fortunately, supported decision-making doesn’t have to rely on the constitutive justification in this raw form. Instead, it can supplement the constitutive argument with an appeal to everyday morality to get something like the following:

J1: To the extent that a society considers it good to be the sort of person that makes decisions, it is discriminatory not to allow people with disabilities to decide on an equal basis with others.

Now, this places some restrictions on what laws are permissible, but does not yet justify supported decision-making. That, however, can then be done by an appeal to social reality.

J2: Everyone needs some support making decisions, and society usually adapts the support to the particular individual relatively smoothly; so, to the extent that a society considers it good to be the sort of person that makes decisions, it would be discriminatory not to adapt support to the particular needs of individuals with disabilities.

This is only part of a justification. Further work would have to be done to show that ‘the state’ rather than ‘society’ should provide a particular support; and it creates, at best, a rebuttable presumption. If, for instance, a society faced a lack of resources, then further arguments would have to justify providing support over addressing other needs. Nevertheless, I think that it’s a  fairly solid argument (at least until someone persuades me otherwise).

It is, however, still a constitutive argument. It is not about outcomes or goals. It is an argument based on what sort of person it is better to be. When combined with non-ideal theory, that point has revolutionary implications.

Ideal theory doesn’t worry about history. It asks what things should look like, not how we make things look like that. Non-ideal theory needs to take history into account, and that is important here. Everywhere in the world, there is a population of people with mental disabilities who have lived for years with other people making nearly every decision for them, often in abusive conditions virtually guaranteed to traumatise them and deprive them of agency. Clearly, not every person with a mental disability fits this description; and, even more clearly, the problem here is not the person, or the disability, but society. Nevertheless, these people exist, and they matter.

If supported-decision making is justified on constitutive grounds, then we are not trying to make things better for these people as they are now. We are hoping to help them to a better state of being. That has implications.

Some people might think that society has no right to tell people how to be at all, but that misses the point in couple of different ways. First, no-one is arguing that people should be forced to accept support decision-making, just that it should be offered to them. That’s not telling someone how to be, it’s offering them the hope of a better way to be. That word, ‘hope’, is important. I return to it shortly. Second, though, it is not the advocates of supported decision-making that are holding out a better way to be. Remember, J2 includes the clause ‘to the extent that a society considers it good to be the sort of person that makes decisions’. Supported decision-making is about including people in a society’s existing ideals, not about creating new ones just for them.

Offering the hope of a better way of being isn’t forcing someone to change, but that doesn’t mean that there is no reason to look closer. In particular, it’s worth looking at the kind of hope that is being offered.

I suspect that for some people supported decision-making may offer what Jonathan Lear has called ‘Radical Hope’. The following is adapted from his account (p92-94):

1. An entire way of life is coming to an end for some people.

2. Their very idea of what is good and valuable is tied up in the way of life that is ending.

So:

3. In an important sense they do not yet know what to hope for or aim for, so they must be open to radically different futures.

But:

4. Even if all that they know to be good and valuable is about to radically change, they nevertheless need a genuine and positive way to be open to the future.

5. This requires faith in a good beyond what they yet understand to be good. In the context of supported decision-making, this may be trust that supporters can see a good for me that I do not yet see for myself.

So:

6. Those facing the change must have faith that although they may lose their existing understandings of the good and the valuable, they will nevertheless somehow get the good and the valuable back. This is radical hope.

This is the sense that for some people, with long histories of institutionalisation and disempowerment, supported decision-making is a revolutionary prospect. It requires abandoning everything that they have known so far, including what they have known to be good and valuable, and trusting to an as yet unknown future. This is no small thing. Lear’s example is Plenty Coups, the last great leader of the Crow people. John Lippitt uses the example of Abraham, asked by God to sacrifice his son.

Sometimes, ‘revolution’ isn’t just hyperbole for ‘a big change’. Sometimes, ‘revolution’ means a leap into the unknown. The word should not be thrown around with blasé enthusiasm. It should be invoked with fear, trembling, and (for those of us who endorse supported decision-making) the hope that we live up to the vast trust that we may be asking people to place in us.

None of this is an argument against supported decision-making. Radical hope is hope, and those of us who worry about law and policy must be guided by hope too. It is just a reminder that the truly hard work of any revolution will not be done by ivory tower theorists or paid professionals, but by people with disabilities.

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