SHE Pod Season 3 Episode 8: Miles Little Lecture - Prof. Jackie Leach Scully: 'Well, it's complicated' Disability Bioethics | Otter.ai

SHE Pod Season 3 Episode 8: Miles Little Lecture - Prof. Jackie Leach Scully: 'Well, it's complicated' Disability Bioethics

Kathryn MacKay45min

Kathryn MacKay

00:05

Hello and welcome to the she research Podcast. I'm Catherine McKenna. And today we have a special presentation for you on the she research podcast. We're featuring the Myles little lecture from 2022, which was presented by Professor Jackie leach Scully, who's the director of the disability Innovation Institute at the University of New South Wales. And her talk well, it's complicated disability, bioethics, disability activism, and something approaching the truth. This episode is a little longer than normal episodes, but we hope that you'll enjoy it anyway. Here's Professor Jackie leach Skelly with her talk.

Jackie Leach Scully

00:46

I want to start by saying some words about mild in the publicity for this talk. It says emeritus professor, John milds. Little for 1932 is a surgeon, philosopher and poet who scholarship has been central to the beginnings and growth of bioethics and the medical humanities. In Australia, I actually saw miles on Tuesday. And I believe he's hoping to be zooming in on this so not, not particularly since I first met him, which I think was in 2005, we've been an example to me in his approach to bioethics. So bringing grounded knowledge and an interest in the particular to a theoretical rigour, and acknowledging the role in health and medicine of important and emotional aspects of human experience. So elements often slip out of sight in academic writing. And also, above all, I think respecting those communities that often get squeezed to the sides and to the margins of academic writing, whether that's patients or women or people with disability. In this lecture, I want to track how bioethics has handled disability, but particularly bioethics in general, but particularly how disability bioethics as an academic activity have been related to activism, or disability rights, and disability inclusion. I think there are inevitably points of tension within the needs of academic disability, bioethics, and of disability activism, come into conflict, I'm going to be focusing on a particularly contested area of conflict arises in issues of knowledge and truth. I'm suggesting that those tensions are probably inevitable. But at the end, I'm going to make what I've said here are recommendations. And by the time you get to the final slide, I've downgraded them to observations. Some observations not so much about how to avoid these conflicts and tensions are how to manage them better to everybody's benefit. Some of what I'm saying is specific to disability, and disability bioethics. But I hope it's also in some ways more generally applicable to bioethics, various types of engagement with what we might call social justice, movement, different kinds. I'm not sure what I'm going to be saying it's also quite theoretical, and it's also largely from the academic perspective of the academic activity dyad. But in the spirit of modern liberal bioethics, what I'm saying also draws on personal experience as a disabled activist, and academic. Over the years. I was going to say over how many years that I was six and activism in general, and bioethics, and who will know abroad they have considered the moral aspects of medicine and the life sciences. Why why things have a lot of different origin stories, but one of them says that it was actual, the patient, activist movements of 60s and 70s, and the commitment of various divisions and employers and philosophy to that activity. And so while the traditional disciplines of academic bioethics, the Big Four philosophy, theology, law, medicine, and also social scientists, while they don't lend themselves immediately to activism, there are reasons why bioethics more than other fields have to confront those kinds of tensions between academia and social justice activism, and I'll be going through some of those. One of those is its role in bioethics role in guiding policy and regulation, bioethics and bioethics are regularly required to help design some Find a framework or the ethically acceptable use of a novel technology or a novel healthcare intervention, reproductive technologies, genetic technologies or even pandemic measures. Much of the bioethical discourse that goes therefore goes on in context aren't especially academic, but they are in it involves sitting in rooms, metaphorical or literal rooms, with policymakers, practitioners, often engaging with groups who have a vested interest in making sure that you're vested interest in making sure that I am audible to all concern,

Jackie Leach Scully

05:45

vested interest in making sure that they those new technologies are used to their benefit. The second reason is that awareness going back to summit bioethics allergens, that there are some people and some groups that are considered more vulnerable to harm in a medical or research context, and that there is a need to protect such vulnerable groups. And I put those groups, vulnerable groups in scare quotes there, because as we know, there's a lot of more debate nowadays about what we actually mean by vulnerable and why those groups are vulnerable, and how bioethics and biomedicine should also address that vulnerability. And that sort of awareness has shifted, along with medicine shift in understanding professional responsibility to patients. So we've seen a move from medical paternalism to things like shared or supportive decision making. And it's also shifted with societal changes in in terms of our understanding of things like the rights to self determination, and participation of particular marginalised groups of people. And this has in turn, lead to bioethics becoming increasingly aware of and influenced by the distinctive experiences of certain groups and what the rights are what I'm calling here Adric tribal bioethics on to a better term in black feminist bioethics, black bioethics, indigenous bioethics. And what I'm talking about today, is the ability bioethics. From the mid 1980s onwards, I've been involved in disability rights activism, activism of other kinds as well. And I was trying to find one of the few pictures or photos I have of me, actually being an activist, which is made on across 28. March in something like 1987 is the smiling richer woman police officer. But I couldn't find that one. So we'll just have to take it as read. I've been involved in disability rights activism, particularly both in terms of general goals of inclusion, and, and some targeted campaigns to change laws. For example, most recently here in Australia, I've been working with disabled people's organisations during COVID, issues around triage and access to critical care. And on the horizon, a little cloud heading this way over the horizon, issues to do with voluntary assisted dying and how that is going to be how it will affect and be received by the disability community. So activism actually predates my involvement with bioethics. And lots of clients really, when I moved into bioethics, disability concerns were influencing a lot of my thinking. And in particular, I was struck by the way that I've many others have been that so much of medicine is actually about preventing or curing or ameliorating conditions that are disabling. It's actually a very, very central part of bioethics attention. But that central authority is actually really made explicit we talk about health and disability sort of out there on the periphery problem that arises if the central bank fails on. Equally striking was the way that at least back then, by with it felt very free to build normative claims and give policy input in issues that were very salient to disability. On the back of No, or very little empirical knowledge or experience of disability, or of taking account of anything other than a purely medical model. The Deaf American boy with the three the blank, my book, cites the philosopher who I'm with ON WHOM I HAVE COMPASSION, so I'm actually going to name him my table and reproductive autonomy, who argued for the life limiting impact of deafness on the basis that deaf people can't drive. Play sports joined the armed forces at or enjoy music, which would be news to many of us here.

Jackie Leach Scully

10:05

So in some work that I published, actually now, some time ago, some years ago, I drew a distinction between the bioethics of disability and disability bioethics. There's the cover that will rush out and buy it because it's in your library isn't it's also very expensive. The bioethics of disability, I identified as being what we'd normally do in bioethics is identifying morally endorsing the ways in which health and social care interventions can be applied to or used with disabled people. And I try to distinguish that from disability bioethics, which is more to do with exploring and examining issues, Bioethical Issues from within the perspective of people with disability. And using that information as a basis for normative reflection and thinking, I think it's important to point out that that doesn't mean that the bioethics of disability is in some sense wrong. It's just inadequate for a whole account, especially in terms of its epistemic limits, and the assumptions that live with different kinds of impairment and different kinds of disability, particularly everyday life, which I'll be emphasising later on that that could all be easily imagined, from outside the experience. Both epistemic inadequacies are particularly important, because in so many areas of bioethics, what we're being asked to do is to make judgments as to whether an intervention is morally obligatory, or at least inducible, based on evaluating the quality of life of a person with or without intervention. So evaluating, often in context of prenatal care, for example, the quality of life lived with impairment. And I've been particularly interested in the ethics of prenatal testing and screening, normally, and the central code for that are questions of whether the predicted effect of an impairment on someone's future is severe enough to warrant intervention or sometimes to warrant into termination of pregnancy or the use of something like pre Implantation Genetic Diagnosis. And similar considerations hold about evaluating quality of life, although sort of less dramatically. For things like the allocation of resources in health and social care, or people with disability, or for surgical interventions. in infancy. There's an abundance of evidence to show that actual experienced and significantly alter personal evaluations of quality of life, or cause the change in life circumstances control can cause different values or capacities to be prioritised than, than were before. The bioethics of disability, I think, for obvious reasons, because of the close association between bioethics and biomedicine, and it's tended to reflect what is called the the medical model of disability, which is, broadly speaking, the belief that disability is fundamentally a deviation, and ideally a viable deviation from some kind of biological norm and measurable biological norm. And that places the problem of disability squarely in the factor of a faulty body. Most of us are not familiar, I think with the way that people with disability and activities really pushed back against that understanding of disability and impairment. The main alternative that arose in the 1970s in the United Kingdom and then spread is what is generally called the social model, although that term refers to a so called family of approaches or models, but all of them broadly speaking, share the view that the problem of disability the reason why we make efforts to prevent or cure, it does not lie solely in the project or in the fact of having a non normative body form or function. But it's more to do with some kind of mismatch between that body and an environment, physical or social, or an attitudinal environment that doesn't accommodate that non normativity.

Jackie Leach Scully

14:35

Social model has been revolutionary in changing attitudes towards people with disability in changing their self understanding, and and also their political power. It's worth noting, in passing, I think that the original architects of that UK social model back in the 70s Were they were not exactly diverse in terms of either sex or impairment or class. aside, they were largely speaking, working class and middle class white men who had spinal cord injuries and wheelchair users. And so understandably, they focused their attention on what mattered most to them. And what mattered most was being barred from work. And so they saw the core issue in disability as being about barriers to participation in the workforce, and social life in general. And that the way to resolve all that was to create a level playing field on which disabled people could effectively be employed and be active on equal term. So in a way, you can say that version, at least of the social model is also inadequate, but in a different way, that fails to capture a lot of what we have now acknowledges the experience of disability. And in fact, it was largely women actually, at the time, who were continuing to exercise the psychological and emotional and cultural aspects of impairment. And then talking about issues like pain and loneliness, or fear or stigmatisation, that aren't all of those issues aren't actually necessarily resolved by providing months important that that is, indeed, from point of view of the feminists at that time, the disability movement was very male, in the sense of being very focused on access to public life, and being able to pass as normal being a normal man. So from the outset, it's feminist perspectives, that were able to carry an element of ambiguity and complexity. For bioethics, as an activity, these social relational models of disability are a crucial insight. I think that at least some of the disadvantageous aspects of visits or disabled people's lives aren't biologically determined. And this is clearly important when you're evaluating quality of life, if you're evaluating a life with poor health, or educational attainment, or employment, and so on, or unemployment. And that turns out to be not intrinsic to the impairment, but to have rather more to do with societal responsive to the impairment. Until recently, these considerations were taken effect to fall when outside bioethics were met. And I can't tell you the number of times in the early 2000s When I would give a talk. And afterwards somebody would say no, that's really, really interesting, but it's not actually bioethics, it widening that analysis, that idea, disability and the analysis of quality of life to take account of these broader factors, social factors, and I think there's often a difficult adjustment for mainstream bioethics to make. And again, feminist bioethics has a much longer tradition of being able to do so we've taken by ethical analysis out of the clinic in the hospital and into the wider world. And that's another reason why disability bioethics has found itself so closely aligned with feminist pornographic.

Jackie Leach Scully

18:07

Now given this history, because it underlines I think, the inseparable nature of disability theory and activism, and encountering one of the presumptions, that often is the truths that actually have very little to do with each other. The conceptualization of disability that is caught in the social model gave real power and real momentum to movement, the disability rights shifted the responsibility, if you if you want to call it that disablement from the individual with the you know, with Don't keep it to the social, or at least partially, and it challenge assumptions of disability as inevitably measurable and dependent existence. It also helped to make disability part of wider moves towards social inclusion. So, the success of the activist Rights Movement have been evidenced by the uptake of that social model or at least a version of a social model, through disability discrimination legislation, nationally and internationally, social services, policy and so on. And the key success, of course, was the adoption of the United Nations Convention on the Rights of Persons with Disabilities in 2006, which in Article One says, persons with disabilities include those who have long term physical and mental intellectual sensory impairment, which in interaction with various barriers may hinder therefore, effective participation in society on an equal basis with others. That is, so standard social model language, and that would not have happened 20 years previously. The same time it's all of these games, the relations between the disability movement and bioethics of the field. We're probably up there with their neighbour In 1985, the Australian philosopher Peter Singer, together with held crusade published should the baby live. The problem with handicapped infants, highly controversial text, this isn't the place to go into the larger controversy to do with thing. We could do that later on, if you wish. But the results for many disabled people's attitude towards bioethics have been catastrophic, with singer described, and you can see there here's a demonstration against singers against one singer it's talks in, in public bike with disability. And same thing as described by a disability activist, a public advocate of genocide or people with disability, and bioethics, or the discipline often and by witnesses, often equated with eugenics and your Genesis. And these difficulties often persists today. And it's so against this background that bioethicists with an interest in disability are all who are themselves disabled, have been negotiating, if you like their involvement in disability activism. And this is important, I think the understanding some of what I'm going to be talking about later, which is how close the engagement between bioethics and activism, disability, bioethics and disability activism generated peculiar new problems for academic disability bioethics. Listening to, I think, a launch into the personal community, because around the first decade of the 21st century, as the disability rights movement was quite properly, becoming more secure, more confident and more powerful, I began to notice that compensations about disability, it's an ontology in and where it comes from, and what it means began to feel increasingly constrained by a kind of orthodoxy. If disabling social barriers are removed, the problem of disability will disappear. And once you do that, or disabled people can be economically productive. Disability is an arbitrary social construct. Everyone, we are all disabled in some way. impairments and disabilities are mere differences or neutral variations, and trying to prevent disability is discriminatory. And if it's prenatal about it eugenic as well. I want to emphasise that the issue is not that any of these statements are untrue, there's a kernel of truth in all of them. The issue is that those statements are going not so much unchallenged on nuanced, we have to acknowledge that they were not the whole story. And that wasn't happening.

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