David Rutledge: Hi, this is David Rutledge on RN. You’re in The Philosopher’s Zone – welcome to the program.

 

Philosophers down the ages have been preoccupied with issues around morality and human rights, and the question of what we owe to each other in a just society. But by and large, there hasn’t been a lot of philosophical literature exploring all of this with regard to disability – which is kind of weird, because disability raises these issues in very complex and compelling ways.

 

John Rawls in 1971 published A Theory of Justice – that was a seminal work that looks at distributive justice, asking questions about who should get how much of what in a fair and equal society. But disability wasn’t his main focus.

 

Linda Barclay: Rawls himself just ignored disability in order to simplify the complex philosophical questions about distributive justice: who should get what and how much. He just took as an assumption that all human beings were equally healthy and able and robust and so on, and sort of made a hand gesture to having to deal with issues of illness and disability at some other time, which he didn’t himself address.

 

David Rutledge: Even after Rawls, when political philosophers did turn their attention to disability, their main concern was how much welfare should be distributed to those who couldn’t work or participate in other key areas of society. Well, my guest today is Linda Barclay. She’s Professor of Philosophy at Monash University in Melbourne and the author of Disability With Dignity: Justice, Human Rights and Equal Status. Linda Barclay believes that it all goes a whole lot further than questions of income or material resources for people with disabilities. And this is where the notion of “relational equality” comes in.

 

Linda Barclay: Often philosophers cast disability as a kind of tragic condition – as a sort of biological deviance from normal species functioning, that’s a tragedy and that causes disadvantage.

 

And so part of what I argue in the book is that it’s not only important that people with disability get their just desserts in terms of income and wealth and access to education and social opportunities and so on. But it’s equally important that they get those things in a way that doesn’t lower their social status by casting them as essentially deviant and deficient human beings. So in the book, I focus a lot on the way in which we describe our relations and the way in which we characterize our just desserts, or what we owe to one another. Also has to be done in a way that helps maintain the essential idea that all human beings are equal and of equal worth. So that’s what I mean by relational equality.

 

To give you an example: after Rawls, many philosophers said, “Look, we focused on class. We focused on inequalities that come about by virtue of the fact that some are more born into more wealthy families. But even when those issues are resolved, we still have to deal with ‘the cripples’ or ‘the stupid’ or ‘the untalented'”.

 

Now, this was the way that philosophers were talking right up until the 90s. And they would then seek to ensure that more income and wealth and other social goods were distributed toward those people. But they characterized them as “naturally deficient”. It wasn’t their fault they were naturally deficient, so we were obliged to help them out.

 

And my obvious suggestion is that we need to ensure people with disabilities get justice – but in a way that maintains their equal status.

 

David Rutledge: So what we’re looking at here, then, is equal status, as you say. But you’re keen to separate that from identity politics. How does identity politics play into this debate and why do you want to keep it at arm’s length?

 

Linda Barclay: So I guess what we think of as identity politics has often been tagged “the politics of recognition” in philosophy. And there’s been many different political demands for recognition that have been discussed at length philosophically over the last 30 years – for example, from feminists, indigenous people, LGBTQ people, cultural, religious minorities and so on.

 

But the demand for recognition is sometimes pitched as a demand to be recognized as the same as others – so, for example, when feminists say women can do anything men can do, or when we might say that same sex relations have just as much value and human good as opposite sex relations.

 

But that’s not always how the demand for recognition is pitched. It’s sometimes pitched as a demand to have one’s differences recognized. So some feminists have argued that what we really need to focus on is the fact that women do have female specific traits, but value them more.

 

To some extent you can get the same tension in disability. But my view is that it’s much more vexed in the disability sphere. I think the experience of disability has largely been one of being pilloried for being different, and that therefore the urgent focus should be on equality, not difference. In particular, the demand that people with disabilities not be unjustly cast as essentially different, deviant or defective. So I just think at this moment in time, the urgent political and social demands need to be for equal status.

 

But there’s a second thing I want to say about the politics of recognition when one identifies as a member of a marginalized group. Part of the process of so identifying sometimes is to claim a kind of entitlement to speak on behalf of other members of that group.

 

And then again, with disabilities, it’s so complex because one might reasonably wonder how a wheelchair user, for example, might have the authority to speak on behalf of deaf people – or more vexing still, what might wheelchair users and people who are deaf or blind have in common such that they get to speak on behalf of people with profound cognitive impairments, sometimes speak on behalf of people with profound cognitive impairments against the wishes of their carers and parents and so on.

 

So it’s not that I’m managing to totally avoid these issues, nor am I saying that I don’t think they’re really important. But I’m sidelining them to focus just on these urgent, immediate demands for equal status rather than recognition of difference or complex political debates about who gets to speak for whom.

 

David Rutledge: Well, one very interesting way of sidelining or perhaps causing to evaporate this this issue altogether is to argue, as some people do, that there’s a sense in which disability is universal, that we are we are all functionally impaired at some point or other in our lives. Is that a helpful way of looking at it, do you think?

 

Linda Barclay: Sometimes yes and sometimes no. I think it’s very helpful in order to combat the false assumption that there’s something deeply biologically deviant about disability. And in that sense, it’s not true. It’s statistically utterly normal that every human being, almost every human being, will experience some kind of functional impairment or reduced function in various spheres at various times. So in that sense, I think it’s very useful. And I once heard a philosopher, a deaf philosopher, make a quip about how she noticed that philosophers over the age of 60 suddenly started to take more of an interest in disability.

 

On the other hand, it can again be vexed. So it’s incredibly important that those who have most at stake – and in many respects most insight – get to do most of the talking. So it’s important that people who are widely recognized or perceived as disabled by the broader society don’t get crowded out by philosophers who have not had the experience of being perceived to be disabled. Because I think it’s those people who are identified as disabled who have the most acute experience of what it what it actually means to live in a society where disability is so dis valued.

 

David Rutledge: Let’s talk about definitions. You make the point that some of the commonly encountered definitions of disability fail to be effective in promoting justice. In what ways is this the case? And how do you define disability?

 

Linda Barclay: I think what I mostly want to argue is that we just need to move on from definitional debates. My view is that working out what we owe to one another and how we ought treat each other is just not going to be resolved by fixing on the right definition of disability.

 

But I think there’s a reason why people have focused on the definition of disability, because a lot of disability activism has quite rightly targeted the idea that disability is essentially a kind of biological deficiency, which is always a bad thing, a kind of tragedy, and should be cured if possible.

 

And those disability activists have been absolutely right to target this constellation of very flawed assumptions, and to call this constellation of flawed assumptions the “medical model” of disability, because disability is not always bad. Many people who are deaf, for example, or blind or functionally different, are quite proud of who they are.

 

So equally importantly, then, disability activists have done a great service in highlighting how much of the disadvantage associated with disability is due actually to inaccessible environments. So lack of ramps, lack of technology that’s suitable for different kinds of sensory abilities or impairments, lack of diversity in educational design that accommodates different learning styles and so on and so on. So shifting focus to the way in which social environments cause disadvantage has been has been incredibly important. And we often dub this the “social model” of disability, the idea being that the disadvantage associated with some kind of functional difference or impairment is largely caused by social environments. So that’s supposedly the great clash of ideas, the great clash between the medical model of disability and the social model of disability.

 

But my own view is that reduced or loss of functioning or impaired functioning in some area of life – which as you said before, is pretty much ubiquitous amongst human beings – is nearly always a combination of the way in which this particular person interacts or is able to interact in her given social, cultural and natural environment. So I’m skeptical of trying to fixate on the cause of disadvantage as either in biology or in society. I think it’s always a kind of interaction between the two of these things. And some people have dubbed this the “interactionist” model of disability. And for me, the real task, what really matters, is to decide which modes of reduced functioning are unacceptable or unjust – and then to try and determine how we should go about restoring better functioning.

 

And again, that’s going to immediately land us into a whole complex of philosophical and legal questions about how we can best make the person and the environment match so that functioning is restored.

 

David Rutledge: So your broader point then is that we should be having a discussion not so much about the nature of disability, but about the nature of our obligations to each other, as you say, in the nature of justice.

 

Linda Barclay: Yeah, yeah. I mean, I do think it’s incredibly important that disability activists have highlighted how much disadvantage is caused by social environments, and that needs to continue to be emphasized. But just merely pointing that out doesn’t yet answer these further questions of “Well, okay, so there’s a mismatch here. This environment is causing this person a certain loss of functioning. There’s still then a whole set of questions that need to be answered about what should we do to restore functioning, how much functioning should we restore and how much of it is a collective responsibility to restore such functioning?” There’ll still be a lot of complex questions about justice and entitlement and what we owe to one another that have to be answered before we can really decide on what must be done. And definitions will never get us to that point.

 

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David Rutledge: You’re listening to The Philosopher’s Zone on RN. I’m David Rutledge, and my guest this week is Linda Barclay from Monash University. She’s the author of Disability With Dignity: Justice, Human Rights and Equal Status.  

 

MUSIC

 

Let’s go back to something that we touched on a little earlier in the conversation, which is this this idea of “resource approaches” to distributive justice. What does this term “resource approaches” refer to? And in what ways is it perhaps inadequate – because that’s your argument, isn’t it?

 

Linda Barclay: Yes, the resource approach says that the correct metric or measure with which to make interpersonal comparisons, to work out how one person’s doing compared to others, is to focus on broadly their income and their wealth. You can see how that helps us to address many urgent questions about some people being extremely poor and a much smaller number of people being extremely wealthy. It’s also crucial for disability. So it’s incredibly important to understanding why we urgently needed a National Disability Insurance Scheme – the fact that some people have complex needs, sometimes very expensive needs, and simply don’t have the income and the wealth to meet those needs. So resources are really important.

 

But the problem with the resource approach is that it kind of stops there. It is the only metric essentially on which it thinks we should compare people. But in terms of justice, exclusion, oppression, disadvantage, our income and wealth is not the only thing that makes some of us much better off than others.

 

If we take the case of women again and build up to a disability example: suppose that women couldn’t work at the ABC because the ABC simply didn’t have toilets for women, it only built toilets for men. Now the solution to that would not be to say, oh, this is making women poorer. We need to increase women’s welfare payments. Obviously the solution would be to ensure that all buildings and workplaces, educational institutions have male and female toilets or toilets for everybody.

 

And so similarly, whilst I think income and wealth is crucially important for many people with disabilities, equally crucial is to repair social and built environments such that everyone, or at least as many people as possible, can participate. And it’s that set of questions that has been neglected by political philosophers and by the resource approach in particular.

 

David Rutledge: It’s also often argued that the resource approach disparages and denigrates people with disabilities, compromises their dignity in some ways. Is that something that you go along with?

 

Linda Barclay: No, it’s not. In my book, I argue that it is true that many resource approaches or theorists have been disparaging. Thomas Nagel, as you know, he’s a very famous philosopher. He was the one who said that even when we’ve addressed problems, of course, we’ll still have “the crippled, the stupid” and so on. So it’s absolutely true that there’s a way of using the resource approach that’s disparaging by casting people with disabilities as somehow biologically deficient. And we, the superior ones, in our largesse will grant them extra resources to make up for their biological deficiencies. My view is that that way of characterizing the problem is not only false, but deeply disparaging and at odds with equal status.

 

But what some philosophers have argued is that it’s just essential to any resource approach that it will be disparaging. So the American philosopher Anita Silvers says that whenever you allocate extra welfare or income to some people because of their disability, you’re inevitably or intrinsically disparaging them by casting them as essentially needy.

 

And I argue in my book that that is definitely, on my view, a step too far. And I think it’s pretty straightforward that we can see that, just by focusing on things like – an example might be the way women require extra health resources at certain times because of pregnancy or childbirth We don’t think that it’s disparaging pregnant women or birthing women to give them extra health care resources as needed. So I think it would be terrible to go down this path of suggesting that whenever anyone in our community might need more resources, that that is somehow to cast them as essentially needy and deficient.

 

I think that that whether or not people like Anita Silvers mean it, that can inevitably be tied up with some very rightwing and conservative politics. I want to defend strongly the idea that people will need different levels of resources and different types of resources at different stages of their lives, and that that’s an entitlement that a just society should seek to secure.

 

David Rutledge: Well, there’s another approach to justice for people with disabilities that you discuss in the book, and this is the “capabilities approach”. What is this, and why does it perhaps work better from the perspective of disability?

 

Linda Barclay: The capabilities approach was first developed by an economist and philosopher, Amartya Sen, many years ago – and in fact he won the Nobel Prize in Economics partly for his work on capabilities. And the way he developed it was in the context of criticizing measuring wealth by GDP. Measuring a country’s wealth simply by GDP doesn’t tell us anything about distribution within the country, how many people within the country are wealthy and how many are poor. But he had a deeper point to make than just that.

 

And his deeper point was that because of individual differences, people will have what he called different “conversion”, different ability to convert resources into functioning.

 

So you might measure two people and say that they’re equally well-off, because they have the same amount of money. But if one person needs to spend most of that money just on addressing healthcare needs, and the other person is very physically robust and has no healthcare needs, it doesn’t seem correct to say that they are equally well off. So Sen was famous for arguing that resources are just the means, they’re not the ends in themselves – and that therefore they’re not the things according to which we should be making interpersonal comparisons.

 

So he said, what really matters is capabilities. What really matters is measuring how much food people have and whether this food is sufficient to keep them well-nourished. Whether people have adequate shelter. And income might be a means to those things, but because of conversion factors, it can’t be used as a substitute for measuring those things. We need to measure those things directly.

 

So his view was quite a modest view. He focused on things like shelter and food and clothing. But many political philosophers, in particular an American philosopher called Martha Nussbaum, have tried to use this approach in a much more ambitious way to say “Well, what we need is a list of essential capabilities. What kinds of things can people do or be? And we’ll measure people against those capabilities – for example, the ability to live healthily, or the ability to be politically active, or the ability to be well educated. And justice is secured only when we’re confident that each and every person has, for example, a sufficient level of each of these capabilities”.

 

So it’s a contrast to the resource approach, because it doesn’t try to measure how much income and wealth people have. It tries to measure something much more ambitious, which is what can people do and be. And it requires the philosopher to come up with a list of what these beings and doings are, that we think are so important that they should be the measure of justice.

 

David Rutledge: But here we come up – at least potentially – against the same objection that people will level against the resources approach, which is that the capability theory compromises dignity, because it conceptualizes disability as a state of neediness and unique vulnerability to suffering. Is that a problem? And if it’s not, why not?

 

Linda Barclay: I guess my view is that it is a consequence of the view, in fact it’s the very core point of the view, that people need different levels of resources in order to be able to achieve good functioning in certain areas of life. But again, I deny that that’s necessarily disparaging. But I think nonetheless, there’s something deeper going on with that, with the capabilities approach. And that’s this: what are the capabilities that we’re going to say “Well, these are the things that all people need to be able to do for justice to be achieved”?

 

So Martha Nussbaum has a list of ten capabilities, and she says any human being that fails to achieve one of these capabilities fails to live a life of human dignity. One of the capabilities that she says all human beings must be able to achieve in order to live a life of human dignity is the capability of political participation. We all need to be able to vote, we all need to be able to be politically active if we wish, to have a political voice and to use it if we wish.

 

Now, Nussbaum herself noticed: “Well, what about a person, let’s say, born with what we often describe as very profound cognitive impairments? She might never be able to vote. She can’t speak. And we have to sort of confront head on that she isn’t going to be able to have a political opinion”.

 

And Nussbaum herself noticed it seemed to be a consequence of her view that we’re forced to say that that woman fails to live a life of human dignity, because she fails to achieve one of these capabilities that Nussbaum herself has said is essential to a life of human dignity. And Nussbaum has grappled with this. So initially she said “Well, there’s going to be these extremely rare situations where we have to acknowledge that some people with the most profound cognitive impairments can’t reach a life of human dignity as we define it for the purposes of justice”.

 

Later on, clearly unhappy with this implication of her view, she instead argued “Well, perhaps they can achieve these capabilities by proxy or guardianship”.

 

So she suggested instead that maybe what we need is guardian voters, and guardian jury duty people, for people who can’t do it themselves so that we can say that they’re still exercising their capability for political participation – to vote, to be on jury duty, to be politically active. But they do it through a guardian.

 

David Rutledge: Is that something you think would work?

 

Linda Barclay: No. And I honestly think many people with disabilities would be alarmed – and rightly so – at the suggestion that more guardianship is what we need in the sphere of disability.

 

So there’s a couple of things here. One is that guardianship might sometimes be necessary to stop a person being financially or medically exploited. But it’s not an ideal state. It’s extremely vulnerable to being abused and misused. And it’s been overused for many, many people with disabilities or mental health issues. So guardianship is something that people with disability are rightly extremely wary of.

 

So that’s one issue. For a philosopher sensitive to issues of disability, to sort of sail in and say “Well, we can just resolve all these problems with more guardianship” is deeply concerning.

 

But the second issue is simply that – well, take the right to vote. The right to vote is not secured or satisfied with the use of a guardian. If you think that a person can exercise their right to vote simply by having someone else vote entirely on their behalf and without their direct influence, then that’s tantamount to saying that my husband voting on my behalf is as good as me voting for myself. And that’s absurd.

 

Moreover, many people with physical disabilities have been excluded from what they take to be proper voting. If they can’t see, for example, or if voting places are inaccessible to wheelchairs. Instead of spending the money on technology and accessible buildings, some political communities have said “Well, just take in someone to help you”. And people with disabilities have said “The vote that really matters, the vote that really preserves the integrity of the vote, is the secret vote. It’s the ability to vote without fear of repercussion, without having to justify yourself, and to be able to exercise your democratic preferences in a secret context”. So having a helper violates that.

 

And similarly, the idea that a person with profound disabilities who’s incapable of having political opinions nonetheless somehow magically exercises her capacity to vote by having a guardian, I think is a fantasy. And it’s also a fantasy wheeled in to try and get us out of this problem with Martha Nussbaum’s approach to capabilities, which is this problem of “the list”. As soon as we start setting up these kinds of detailed lists, it’s almost inevitable that there’ll be some tiny number of people that will never be able to achieve these capabilities, these things on the list.

 

And I’m not sure yet what the answer to that is and how we should deal with it, because I do think the capabilities approach has a lot to offer. But I don’t think the answer is to come out up with these kind of ad hoc guardianship solutions. I don’t think that’s a solution at all.

 

David Rutledge: Well, there’s so much more to talk about with all this. But at this point, I think we’re going to have to refer listeners to your book, Disability with Dignity, where they can explore a lot more of this. But for now, I’ll just say, Linda Barclay it’s been wonderful to speak with you. Thanks very much for coming on the program.

 

Linda Barclay: Thank you, David. It was my pleasure.

 

David Rutledge: And Linda Barclay is Professor of Philosophy at Monash University in Melbourne. I highly recommend that book. We’ll put publication details on the website. That’s The Philosopher’s Zone at RN – you can also find us via the ABC Listen app or whichever podcasting app you happen to use. And we’ve got lots and lots of programs for download. Thanks for your company this week. I’m David Rutledge. See you next time.

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