Latest / Health Ethics Podcast / The Philosophy of Disability: Equity, Justice and Health

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The Philosophy of Disability: Equity, Justice and Health · Health Ethics Podcast

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Welcome to the COVID Ethics Series podcast, a conversation with leading experts about bioethical
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issues that have been exacerbated due to the COVID nineteen pandemic. I'm Brian Pilkington,
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and I teach bioethics at Seatonhole University and at the Hackensack Marine School of
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Medicine. I moderate the COVID Ethics Series in cooperation with the IHS Library and
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IHS Student Life. This podcast is a spinoff collaboration with the IHS Library where
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we'll have the opportunity to go deep with the experts from our series. Thanks
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for joining our conversation. Welcome everyone to the COVID Ethics Series podcast. Thanks
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so much for coming back. Returning to continue our conversation. We've recently spoken
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with a number of philosophers bioethics and other academics and practitioners bought some questions around
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bioethics and disability. So recently you've heard doctor Charles Binkley think through some ethical
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listeners and surgery. And it is my great pleasure to have Professor Joel Michael
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Reynolds with us today who worked with doctor Binkley on the article that doctor Binkley
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had discussed. So. Professor Reynolds is Assistant Professor of Philosophy and Disability Studies
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at Georgetown University. Professor Reynolds is also Senior Research Scholar at the Kennedy Institute
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of Ethics, Senior Bioethics Advisor, Fellow at the Hastings Center, Faculty scholar
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of the Greenwall Foundation Factley Fellow in the Ethics Lab, as well as editor
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of the Journal of Philosophy of Disability and the series editor of the Oxford Study
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Disability, Ethics and Society. Joel, thanks so much for being I really
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appreciate the time, pleasure to be here, happy to be chatting. So
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I'd like to start with the recent paper that you, Charleston M. Schulman
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and published titled From the Eyeball Test to the Algorithm, Quality of Life,
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Disability Status and Clinical Decision Making and Surgery. So what I'd like to begin
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is we'll talk about that and it will sort of broaden the conversation because,
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as we've discussed, there are a bunch of students who listen to the podcast
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regularly who are very interested in questions around philosophy of disability and bioethics. So
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we'll start with the paper. What motivated you and your co authors to take
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up this project? Yeah, I think it was maybe, oh boy,
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two or three years ago since COVID. Of course, I can't keep track
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of time anymore that doctor Binkley reached out to me. It might have been
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doctor Binkley and doctor Schumann, and they had been chatting about this issue of
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the quote unquote eyeball test. This somewhat perhaps quite common practice among surgeons of
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various specialties of kind of sizing up a patient and having a more or less
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let's say, gut intuition about whether or not they're a good candidate for a
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particular surgical intervention or not. And doctors Binkley and Human are aware of the
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significant body of research suggesting that there are biases on the parts of many clinicians.
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This is also just true of people in general. There are biases concerning
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disability and links between disability and quality of life. There's also structural issues at
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play. Of course, this is not merely a question of what's in people's
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heads, as it were, implicitly or explicitly, but they're aware that this
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is an issue and they wanted to work together to think through. Okay,
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does this mean, for example, the eyeball tests should just stop being used?
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And you know the takeaway, the big punch of the papers to say,
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yeah, yeah, the eyeball test is just not a good method for
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making decisions as momentous as you know, this patient, it wouldn't be worth
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it for them to have a particular surgical intervention. And we argue one of
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the concluding kind of arguments of the pieces that look, especially with machine learning
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and AI and the development of these tools that can be trained upon very large
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data sets, we should be using in the spirit of evidence based medicine,
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we shouldn't be using the best tools at our disposal to make these sorts of
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judgments. Not that the intuitions of a particular surgeon aren't valuable, they are,
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but they need to be linked and hooked up with wider sets data than
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merely something like an eyeball test. That's that's really helpful. And we'll assume
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that everyone has either who's listening to podcasts is either carefully read the paper or
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about to carefully read the paper. So we're among among folks who know a
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bit about this. Since you brought in the importance of large data sets,
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and this sounds super helpful, especially for folks who you know, you can
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have a gut reaction to something. It'd be wrong. Right, You've already
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bought brought in concerns of bias. Do you have any concerns about so let's
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think about future healthcare practitioners or current healthcare practitioners, any concerns about bringing AI
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into the processing they're already involved in. That's there anything we should be Yeah,
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yeah, you know, AI and machine learning more generally, these are
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not silver bullets, and there's been so much good work over the last five
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to ten years analyzing the way which AI can actually reproduce the very sorts of
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biases that one might think it would get around. You know, algorithms require
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someone making the algorithm, and the someone's making these algorithms are still people,
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and data sets are still at down the stream. Data sets are still coming
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from information that is being selected in various ways. You know, you get
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the point here. Having said this, while it is not a silver bullet,
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there are all sorts of promising ways of utilizing it, utilizing it in
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conjunction with the discernment and wisdom of the people who are taking up that data,
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and I don't think I should be very clear even though we do reference
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AI solutions at the end of this piece. One of the kind of central
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themes throughout the whole piece is like, hey, we have social scientific research
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on a lot of stuff, you know, sociology, anthropology, these fields
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have been around for a long time, and especially the qualitative forms of them.
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We have really great evidence about lots of things concerning the lived experiences,
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judgments, all sorts of stuff for patient populations. And when it comes to
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to circle back to the original kind of worry that disability bias might be at
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play in something like the eyeball test, we've over thirty years of great social
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scientific studies demonstrating over and over again that people with disabilities, including quote unquote
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significant disabilities, report similar levels of quality of life, not lower than comparatively
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able bodied people. And this, unfortunately, this research seems to have not
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fully taken hold in people's minds. And I'm the reason I say that,
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of course, is especially based upon a twenty twenty one study that came out
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in Health Affairs by Aazonian team. It was a It involved a survey of
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seven hundred and fourteen practicing physicians in the United States, eighty two excuse me,
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eighty point two percent of them reported that people with significant disability have lower
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quality of life. And that's just false, right, So that's that's really
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worrisome because the research on that, again, this is decades old research.
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It's so famous. Back in nineteen ninety nine, it was dubbed the disability
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paradox because it seemed to most researchers counterintuitive that people with disabilities would have similar
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levels of quality of life. And also, if you think to yourself,
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you know seven hundred and fourteen, that an end of seven fourteen is not
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that big. There is a study done granted different design, a study done
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of over twenty five thousand practicing clinicians and twenty twenty and that one one of
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the outcomes of that study was that even though there was a clear awareness of
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the problem of disability bias and ableism on the part of providers, and there
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seemed to be some science that providers were not only aware of it but expressed
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concern over ableism, they nevertheless seem to prefer non disabled patients. And that's
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just another study that kind of suggests there's something going on here. We need
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to address, whether it's at the level of medical education, whether it's at
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the level of how what relationship clinicians take to not simply data from the hard
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sciences, as it were, but data from the social sciences. There's a
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lot to be I think there's a lot of paths to take that can solve
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this, but we're not there yet. That's super helpful. Not coming from
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a social science background, an end of over seven hundred sounded, you know,
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pretty good to me at a research study. Yeah, it's not that
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bad. Yeah, right, And then jumping out twenty five, I mean,
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this is super helpful, and you've anticipated sort of where I wanted to
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go, and broadening out to questions around the philosophy and disability. Again in
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light of some interests I have with the students to listen to the podcast before
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we jump into the philosophical questions, any sort of direction or practical recommendations for
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health profession students. So we've got a bunch of med students to listen to
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the podcasts, nursing students, and also students warning a variety of health professions.
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So a few of them have more recently run into questions around sort of
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bioethics and disability. You've just pointed to a huge issue in biased sort of
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set of issues associated with bias and perception help point them in the right direction.
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What should they or could they start to do as their training so they
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can become sort of properly practicing in as best as they can unbiased health professionals.
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Yeah. I mean, if any clinician, practitioner in med student is
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asking the question, they are already on the right path. So I just
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want to note that that that's great, you know, to answer that.
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Forgive me for referencing something else I've written, but this does the piece I'm
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about to reference directly answers your question. I had the great joy of getting
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to write a piece for the American Medical Association's Journal of Ethics that came out
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in twenty eighteen, and the piece is called three Things Clinicians Should Know about
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Disability, And in the piece, I do exactly what the title suggests,
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and I lay out some core points that I think are points or insights or
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claims that I think should be front and center in clinicians mine and then I
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end with three direct kind of take away responsibilities. And these are the three
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that I end with first, I think that clinicians have a responsibility, and
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this is a responsibility not just as people, but specifically as clinicians to develop
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disability humility, especially if you don't identify as disabled. You don't know what
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it's like to be disabled. You know other people do and it is very
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easy. And I think this is just a human thing. I'm not sure
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this is I don't think this is particular to people who work in the medical
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profession to look at someone with a particular disability and merely assume that it's a
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difference or a deficit relative to what one understands. So think about blindness,
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You're like, oh, someone might say, of course I know what it's
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like to be blind. I can close my eyes and then I know.
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And that's not actually how things work, right if you're cited, you don't
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know what it's like to be blind, because blindness is not merely the lack
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of sight. All of the research on blindness suggests that this is true,
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whether we look to neuroscience or whether we analyze people's testimony. Blindness is most
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people who are blind see in various ways. They don't see like I do.
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They might use echolocation, they might see through their seeing eye dog,
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they might you know. And also it's always worth noting if we're going to
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talk about blindness, that only fifteen percent of people are like quote unquote actually
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fully blind. Most people you have low sight anyway, I digress, just
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that fact is not well known. Anyway. This is all to say,
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developing disability humility and having the sort of taking that as a virtue or almost
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as a kind of character trait, I think is crucial. Second, I
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think the clinicians have responsibilities to communicate better with and about patients with disabilities.
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There are multiple studies suggesting that disabled patients in particular experience a lack of satisfaction
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of communication with providers, whether it's their GPS, whether it's specialists, whether
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it's an emergency medicine, you name it. And I think that having disability
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humility and also just being aware of this as an issue can put one in
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a position to communicate, to communicate with disabled patients in a way that elevates
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their knowledge of their own life, their experiences. And this is actually the
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third point. These are all clearly tightly interconnected that I think clinicians and responsibilities
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to recognize the authority of people with disabilities as experts about their own lives,
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as experts about their own care in the sense of being a partner in their
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care with a clinician. And I think elevating the voices and perspectives and understandings
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of disabled patients is crucial. You know, every single hospital ethics board should
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have at least a few people with disabilities on it. There should be more
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disabled clinicians and nurses and whatnot. And part of the reason that disabled people
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are so underrepresented, excuse me, underrepresented in the profession. It's not because
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or the statistic cannot purely be explained by oh, you know, if you're
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in a wheelchair, you can't do X, and the clinic you can do
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most everything you need to if you're using a wheelchair in the clinic, but
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you know what you can't do, you can't do it if everything's inaccessible,
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if you can't get a wheelchair in the surgery room where you can't get it,
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you know you Also, the medical education has a big issue around accommodations
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and accessibility for testing all sorts of things you need to do through pre med
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and med school could be made more accessible for students and instead right now,
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it's siphoning disabled people who are disabled who want to go into the medical profession,
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it's siphoning them out. So there's lots of I'm now kind of bouncing
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around on things here, but there's lots of things that can be done and
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there that's super helpful. And actually I was going to hope to ask you
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to put on yet another one of your hats, which is why I sort
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of listed all these things at the beginning and describing it. And so I
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think we're close to there. And that was as an advisor, right,
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So your senior bioethics advisor and fellow at the Hastings Center, suppose right,
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so we have some directions for the students. Suppose there's an institution, medical
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school, nursing school. We can sort of speak broadly, and we have
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folks from these kinds ofdents who listen to the podcast. You say, Professor
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Renald, sounds exactly right. I want to know more about disability humility,
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not just how you framed it. And for the colleagues, you know me,
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I want to point out we're talking about virtues right not rules right away,
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so we're already in the right ballpark. But suppose an institution wants to
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inculcate this kind of virtue in their students. Do you have institutional recommendations?
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Do? I mean, what would you say to the folks leading these organizations
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who notice or who are interested in sort of pushing this. Yeah, I
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mean, first thing. These days, it always sounds like a bumper sticker
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when you say what I'm about to say, But I do think that representation
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absolutely matters. And bringing in disabled people as advisors, bringing them into the
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classroom, bringing them into meetings about medical education, all of this is crucial.
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That can get complicated, you know, if you're in a rule setting,
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that can be really hard. Don't get me wrong. I don't mean
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to suggest that these things are easy. It takes effort. It also takes
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money. You know, all of these people should be paid. This should
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not be free labor. Having said that, that's very, very difficult,
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here's something that's slightly easier. I had the great honor of working with Christine
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Weisler, who is a philosopher, a bioethicist, and has also now has
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years of medical education, actually teaching in med schools. We put together this
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book called The Disability Bioethics Reader came out with Rutledge earlier this year, and
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one of the reasons we created this volume is it seemed very clear to us
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that although bioethics education continues to grow and be something that medical institutions see as
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necessary as part of basic medical education, but also continuing even though that's great,
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so much of bioethics, for annoying and boring reasons. I could go
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into if we want to do a history of bioethics thing for a moment,
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but so much of bioethics has excluded disabled perspectives. It has been the theoretical
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kind of underpinnings of the field has disabled viewpoints and research on people with disabilities
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at an arm's length on the whole. And we wanted to say, well,
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what would it mean to think through bioethics issues if we centered and took
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really seriously the experiences of disabled patients, and also what if we took really
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seriously research in philosophy of disability, research in disability studies, right, and
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that this is an over fifty year old interdisciplinary and multidisciplinary field. There's just
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amazing resources there that have not been tapped upon. Tapped upon is that the
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previous I don't know what tapped on. I think one just taps, but
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I don't tell you that's it. That's it, yes, right, yeah,
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thank you. Anymore coffee holding they haven't been tapped. And so this
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it's a nearly forty chapter volume. We cover everything from you know, beginning
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of life, end of life issues. Many of the kind of big bioethics
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themes get touched upon, but in the get addressed rather in this way of
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taking disabled experiences seriously. And I think this resource, I really hope that
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this resource gets used in especially medical schools and continuing medical education. The team
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of scholars we put together for this are just fantastic, and I think that
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utilizing a resource like this will assist everyone who cares about improving quality and equity
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of care for disabled patients. I think it will also lead to improving quality
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and equity of care for people full stop. But yeah, it's super helpful
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and it's always good to have homework. I will plug some of the excellent
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work that you have published for students, so I will put all the links
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up on the website. But for those leading administrators at our organizations, definitely
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check out the disability bioethics reader, So excellent, super helpful. Thank you.
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I want to turn now, if it's all right too some with in
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mind some of these students that I've mentioned who are gaining more serious interest in
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the philosophy of disability, what do you see as sort of what are the
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future ethical issues that's rooted in the philosophy and disability which students might begin to
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think about if they already have sort of waded into the field. What are
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the upcome issues? What do you see five ten, fifteen years down the
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road? Which is a big ask, But is there anything that you,
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yeah, have begun to think about, or for the students, for the
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health professional students who are interested and have started reading a little bit around in
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philosophy of disability, where should they go to the next Yeah? Great question.
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Also definitely a hard question to answer. I feel like I'm bad at
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prognostication in general. So what's going to happen five to ten years from now?
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Who knows? But having said that, well, Fort, let me
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answer in reverse order. In terms of resources. The journal Philosophy of Disability,
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which which you mentioned at the top, it's open access. Everything is
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completely open access, and I highly recommend, you know, taking a look
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at the journal. We We've already published two very exciting I think issues that
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have a lot of groundbreaking work in terms of where things are going. Well.
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One thing that I'm grateful in seeing a change is back in the nineties
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and even through the early aughts, partially because the field was still kind of
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being built, questions were questions concerning disability often got reduced to, well,
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is it permissive if disability is something that is compatible with similar or high levels
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of quality of life, is it permissible to like cause someone to be disabled?
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And these are where the debates were kind of mired. You also had
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a long standing debate between Eva Katay and Peter Singer where Singer has this I
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think completely indefensible understanding of human value tied to capacities and catays like this is
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messed up. And anyway, I don't need to go through that whole that
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whole thing. It's just that the real the richness of disability as a phenomenon
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that can be analyzed philosophically, I think it was very narrow and now we're
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starting to see, oh my goodness, well, if we take the complexity
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of disabilities here, if we understand that it is as central and rich and
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complicated of a way of carving up human experience as the way we do with
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say, questions of sex difference, gender difference, differences, along lines of
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racialization, different, you know, class, you name it. Now,
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there's lots to talk about, right, and the kind of highly narrow,
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I think, arbitrarily narrow topics that were discussed in the nineties and oughts,
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those kind of seem passe, and I think for good reason. It's very
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It just seems to me that the debate is done over issues of, for
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example, is it wrong to cause someone to be impaired against their you know
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will? I think Elizabeth Barnes just ended this debate in one of our chapters
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in the twenty sixteen book The Minority Body, which I highly recommend. But
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now what we're seeing is like, okay, well, how let me think
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of a a concrete kind of question. Insofar as it's true that disability is
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a fundamental part of the life course, and if someone wishes to live a
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long life, they are perforce wishing to become impaired and disabled in various ways.
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That is what the desire actually consists of. And this is true of
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everyone. What does that imply politically? What does that imply about the world
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that we build communally together, especially in light of things that climate change.
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I think it implies something like communitarianism. I think it implies that you have
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to have You cannot have something like a just society without there being a basic
25:52
social safety net of thresholds that you don't allow people to fall below. You
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do not allow people to go and have You do not allow people to not
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have access to basic healthy food, to not have access to basic health care.
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You also don't allow people to be essentially forced to sell their labor because
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they can't cover their needs, So you need something like universal basic income.
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I think there's lots of political implications that can be drawn from a kind of
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let's go with a rich, complex understanding of disability as a fundamental component of
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human life. But a lot of this has not really been worked through theoretically,
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certainly not in a kind of more technical philosophical sense, and I would
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really like to see where this goes. I think more work that takes disability
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seriously and is social political in nature. I think there's just a lot of
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growth in this area. Yeah, and there actually is super helpful, and
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now I can point to this podcast when I slip in the political serial lectures.
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Yes, everything was political all the way down and there's no way to
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avoid it. This is good. I'll just cite you, Uh, Joe.
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We're running out of time. This has been a tour de force and
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I really really appreciate the time for everly tuning in. I'm Brian Pilkington,
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and I'm speaking with Joel Michael Brown's professor Assistant Professor of Philosophy and Disability Studies
27:25
at Georgetown University, as well as senior research scholar at the Kennedy Institute.
27:29
Senior bioethics advisor and fellow at Tasting Center. Professor Reynolds has already pointed us
27:34
to the Journal of Philosophy of Disability and Uh, the Oxford Studies in Disability,
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Ethics and Society. I don't believe, Joel you've mentioned, though I've
27:44
ordered a copy, I haven't ready yet The Life Worth Living, Disability,
27:48
Pain and Morality, which is your big book that came out last year.
27:52
Yes, my editor will kill me if I don't mention that. I keep
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forgetting to promote my own book. Yes, it came out a couple of
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months ago with you know, Versity of Minnesota Press, and that is a
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book that's also trying to take central questions in philosophy of disability, but with
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both a backward and forward look and say, why is it that across the
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history of the Western intellectual tradition, we've so often conflated experiences of disability with
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pain and suffering that conflation is inaccurate. How did that happen? Why did
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it happen? If you read it, you'll get hopefully some answers. Thank
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you for everyone listening. We will post links to all of these. Joel
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as always great to talk with you. Thank you for the time, and
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I'll look forward to the next time with chat. It was a pleasure.
28:37
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