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

12:49AM Oct 4, 2022

Speakers:

Kathryn MacKay

Jackie Leach Scully

Keywords:

disability

bioethics

activism

social

impairment

disabled

activist

academic

people

life

model

problem

disability rights

disability studies

movement

goals

normative

thinking

political

normative claims

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.

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,

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.

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.

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.

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.

So I want to pause this account here of disability activism and take a sideways look at a simultaneous set of events within disability studies. And I hope you'll see the connection shortly. This was particular perspectives that were emerging at the time, they continue to have quite a strong influence within disability studies. And also, within some areas of bioethics. Broadly speaking, you could say they come under the heading of critical disability theory. It's particularly an approach that had been influenced by post structuralist thinking. And it's also very interested in the possibility of technology and the technological modifications and adaptations of, of the body. And that was part of what made it appealing, I think, to buy weapons, as well as within disability studies. It sort of push it beyond the traditional understandings of the normal body, or the capacities and limits to the body sometimes, literally, the physical limits of the question of, you know, why should our bodies and the skin is a classic, article title. And, again, I want to emphasise that these takes these perspectives, in many ways provide really valuable questioning of those conventions and what we take for granted as being normative embodiment, normal embodiment of the social cultural parameters that define acceptable forms of bodies and that thinking imported into medicine and healthcare, and the bioethics after think about and all of this have major ethical implications for disability. The problem for me with these approaches often appear totally I'm interested in the materiality of disability. Describing the body as one because I have this is the body is, is an encompassing connectivity because I'm troubled by structure form of identity. It's interesting, it's intriguing, it's very challenging, it's veterans are thinking, but I question whether it will snap to the lived experience of any person with disability and it's certainly not going to help you get access to the NDIS. That's kind of making a caricature of it. But I think the real problem and the reason I mentioned this is the lack of interest, disinterest in the material reality both material aspects of the disabled body had an unexpected resonance with and it helps to reinforce what I described earlier as that emerging oversimplification of the activist difficult. That the common feature between the two which is sort of surprising because they were almost at two ends of a different kind of continuum. The common features sidestepping engagement with the mundane, gloppy, sometimes detail of disabled lines, the diversity and the contradictory pneus of that experience, which is what disability, bioethics tries to examine. I'm not naive enough to think that that kind of oversimplification isn't necessary, it's often necessary to achieve political goals. And it has enabled disability rights to be seen as just the next obvious that in a modern platform of inclusion of different kinds of marginalised groups are becoming sensitised to discrimination on the grounds of sex and religion, and ethnicity and class and sexual orientation and indigeneity, and so on. cynically, all those things that are listed at the bottom of job adverts nowadays with disability being the one added, and most recently added, and you can politically socially ethically growing inclusion is a good thing. But, and this is why I know some people in the audience of watching might want to challenge me later, I would argue that we can only see it as the next obvious step alongside all the thought of inclusion to crossing over some awkward complicating factors. Disability is different from most of those other groupings for this reason, most of those other groupings it's possible to imagine remaking the world in such a way that the problems of discrimination and exclusion to justice appear. You can fantasise you know, waking up one morning, everybody wakes up one morning, we've also gotten the history of racism, it's no longer there, there's no evidence or you can imagine the world being so arranged that being embodied and black or Asian, or not the context of being a woman or being there makes no difference to life prospects and flourishing. And that just isn't true in quite the same way. The disability. Disability is a social construction in the sense of it's an idea that we've developed. It's an idea that's been developed around an observable reality of embodied difference, and sometimes that it's different enough to be problematic.

As the social model argues that our impairments and whether the right reorganisation of attitudes and social barriers with that might reorganisation, the resulting level of disablement would, would be trivial, or might just disappear altogether. But there are many others were absolutely no rearrangement that's luxury furniture is going to remove or disadvantage and suffering. The medical sociologist, disability writer Carol Thomas, who died earlier this month, all these impairment effects up things like the pain and the breathlessness or the seizure or the incontinence that would still be there after a perfect accent retrieved, then in many cases would intellectual impairment. For example, my own deafness would be rendered trivial if there was universal free captioning. That was at least moderately accurate, at least not NBC signing, induction loops, things like that, that would all remove barriers to communication. But none of that would do anything for the tinnitus, but I occasionally expect and for that, I need a medical intervention. So going back to that historical timeline, from around the mid 2000s, that I was finding myself in discussions of disability rights, or healing arguments being put forward by best groups, where I was uncomfortable with what seemed to me to be an ideology about disability. And you try to challenge the ideology in public, at least at your peril, sometimes imply that those same people would agree with me that the experience of disability was more ambiguous ambivalent was more complex than they were allowing in public, but they emphasise that the strategic need was to keep things simple. And I could see you know, the strategic need the necessity for that. As some of you will have heard me say before, if you want to have a pop Like movement and popular public movement, what you need is very short punchy slogans like Black Lives Matter, or hashtag me too. And nobody has ever rushed out onto the streets to gather around a banner that says something like, well, it's all really complicated. Why don't we sit down and have a talk about it and see where we can get. It just doesn't work. So in a sense, complexity we can agree can be counterproductive, in a political sense, when it dilutes the power, the type of shape of an emancipatory message, or when it exposes divisions within a movement we should suppose to have in the United face to the pumping your argument with the showing disability to be diverse and dynamic and relational, contextual, and so on was confusing. And it would effectively weaken its political cause to change attitudes and enable access government bodies on the whole, you know, they want the simplest possible solution to a complex problem, they don't want to be told that the solution is as complex as the problem. In particular, the putting any focus on the biological impairment would look like a retreat from seeing disability as a social issue. And the slide back towards seeing the problem is being located in the individual body itself. So for disability activism, leaving out that neurons often said corporate magic. That pressure to reduce complexity, I think, to prevent some serious threats to the intellectual integrity of academic disability, bioethics, some of those that include what I've got up here, there's the risk of groupthink capturing. And that's where you become so enmeshed in the goals of the movement and so in cultured in its ways of thinking, to the point of being unable to bring that kind of necessary chain. That can be kind of critical weakening, which is being reluctant, because of compassion, or sometimes because of guilt, being reluctant to apply the same standards of evaluation to an activist argument, and she would do to any other so you fail to call out faults in logic and you fail to carry out Nicola cherry picking facts. And there's also conscious of censorship, which is either through your agreeing that yeah, if you say anything complex, it's going to potentially risk the advances of the movement, or perhaps, you know, more insidiously, through the fear of losing the support of other activists, and colleagues.

And here, I think it's necessary to note a special vulnerability in these cases, the magic title work as you talk with bioethics, we're very often by with Business Insider, to that experience. You're a woman in feminist bioethics, you were just a disabled person in disability. And here, losing the support of the activist community can mean not just becoming unpopular, but possibly the loss of a community, that money is possible, in a way that can be both. It could be professionally damaging, but it can also be personally demonstrating. We're trying for me my disagreement, that prenatal testing it's always and inevitably discriminatory and eugenic got me disinvited from conferences. I can see the same thing looming about voluntary assisted dying action, but much worse with losing friends who I've known and worked with for decades. And moreover, I think we're 20 years ago so the prices are going against an orthodoxy whether that's an academic orthodoxy on activist, author proxy, the title might be dropping off your colleague Kristen Coughlin today It can mean assassination by social media. And again, we know that minorities, black Indigenous women are more vulnerable to that. For the academic pirates, this and for this particular disability and boy with the question then becomes, you know, what, what am I doing here? Where Where do my allegiances lie? There are two main strands historically and thinking about what we're doing in the academy what we're doing when we seek knowledge in any field, including bioethics on the one hand, and this is the tradition of kind of models philosophy the bioethics group off on that tradition there's it's the detach search for objective truth. Rock writer on this said that what we ought to be doing is, quote, a follow up arguments and evidence where they lead without regard to the social consequences of doing so. And that tradition feeds political engagement as it's like to this. So from this point of view disability bioethics needs in a sensitive bracket off the effects of any one makes any concerns about social and mental change. Otherwise, it becomes subject to those intellectual risks I was talking about Slidell children. But there's another tradition that characterises all the academic fields that have grown out of an emancipatory movement like feminist theory like disabilities, like critical race theory, and so on that one says that the real value of knowledge lies in the extent to which it transforms the world for the better. Parenthetically, though, that traditional third tends to argue that the supposedly pure and detached knowledge of the fifth petition is in fact, intensely political. Because if it does nothing to change the status quo what it's doing, it's reflecting the viewpoint of particular dominant social groups. I've argued in detail elsewhere, but many people have read it. So this is all I would have, I'm sorry. Ultimately, bioethics is a normative practice. Because ethics of every kind, is saying that there are morally better and worse ways of going about our lives, or practising health care, or implementing a new biomedical technology or whatever. And it's our job of epithets to identify, and to justify both morally preferable options. And I'd argue that as soon as we do that, we've made a commitment to one state of affairs over another, you know, even if it's only in our heads, if you can never go out on the streets or sign a petition. We've already moved, we've made that shift. And that is, it may be a small step, but it's an irrevocable one away from the traditional idea of total academic objectivity. That means that there's no bright line dividing disability, bioethics and disability activism. They are on something like a continuum. Most of us find our way at different points in our lives. It's different places along that continuum.

But they're not the same thing. And at different points along the continuum, there are distinguishable priorities and distinguishable responsibilities. And here are a couple of the most important ones I think, were relevant to our discussion today. First of all, I'm going to stick my neck out and say that academic disability bioethicists, the ultimate responsibility is to the truth. That doesn't mean that activism isn't interested in the truth. It's just that we've seen that often its priorities are a little different. So whether the concept of truth today isn't unproblematic, or that needs to be. And we understand, for example, that material factors don't come after some mediated. And we also understand that the model strength of tribal bioethics lies in recognising the truth and God's eye view isn't in reality accessible to us. And the view from different perspectives is different. But that doesn't mean that material facts biological and social fun, don't exist. You can have caveats about the tools at one's disposal to get at True Knowledge and still agree that it's worth making at least the best stab at it that you can. What disability bioethics enabled us to do, is to ask some really critical questions like, Who has the power to define True Knowledge? Which disabled voices are silenced? Who do we need to listen to, to understand this thing better? And so on? asking those questions gets us closer to something approaching the truth. However, politically inconvenient, the answers might be. But actually, these questions are critical for activism too, because maybe they are politically The Answered may be politically inconvenient, but it's also possible that those answers will strengthen a case for justice or equality, that that it doesn't collapse at some point in the future when it comes under from the attack. And that lack of a clear demarcation between academic bioethics and disability activism also leads me to the bold statement that whatever, that's ideologies, whether they call themselves normative or theoretical, whether they're really way down on the activist spectrum, then bioethicists don't have the luxury of not being naive about the real life consequences of their normative claims. We have to keep them in mind. As I said earlier, bioethics feeds potential alternatively into health care policy, health care practice public discourse. And that's why I raised earlier. The top of them a disability theories that are, you know, they're thought provoking, they're intriguing, they're challenging, etc, etc. Or they are positioned as being just ideas or, you know, just thought experiments. With contract context of bioethics, they are very likely to have real life consequences. And there have been examples of that, however disconnected they are from the experienced reality of people with disability. So see, one thing that activism, sometimes has to do is focus very narrowly on very defined goals with a particular campaign or particular vote that needs to be achieved. Disability by represents all by record based I think, by contrast, have a responsibility. always just think beyond the immediate focus not all the time, but at some point along the line, sake, beyond the immediate focus, to consider in particular what to do when rights and interests come into conflict. Go back to the example of prenatal selective technology technologies for avoid anomaly. Research, you know, very strong disability critique, about testing and selecting technologies, and particularly those that need to selective termination. arguments about disabled people's rights to existence as disabled, sometimes bang right up against arguments about women's rights to bodily autonomy they might choose. We expect disability by a representative to understand the disability critique, and the experience base that it comes from, but also to take on responsibility of working through the implications of those views for all kinds of disabled people, for their families, for institutions of health and social care, but other stakeholders and other rights holders in society.

So, I said, I backed away from the idea of ending with some recommendation. They have been downgraded to observations here about how is the ability bioethics, and maybe the court disability activism towards achieving those social justice goals. My thoughts out that academic bioethics and activism that I've set out separate things they do for me continue, but with priorities shift according to where you are. Knowing your responsibilities. I mean, the important thing there is to know once responsibilities and priority and recognise where we are along that continuum at any one point in any one piece of work. Disability, bioethics also had some responsibility not just to take the most comprehensive view possible, of the potential consequences of our ethical thinking and judgments in the clinic, public health society as a whole. We can't expect disability activism to do that, because it has other priorities and neutral. Disability bioethics needs to be quite rigorous about remembering that political arguments and strategies aren't equivalent to truth claims, and sometimes reminding others of that. Think disability, bioethics, but serves in Munster poetry, goals of activism by being a critical friend to activism. And that's the kind of thing who will tell you honestly, that that haircut was a really, really bad idea. Sometimes our role will be true in mind activism, you know, oversimplification, oversimplification, can be tactically effective. But that strong and enduring political claims need to be anchored in a complex reality if they aren't going to endure. And finally, sometimes, speaking, truth to the powerless is just as difficult and challenging, and speaking truth to power. So the take home message for today it looks complicated. You start through 15 minutes to learn. Disability is complicated, and so is the join between the world of disability bioethics and disability activism. And it's also you know, it's equitable and challenging, and frustrating and occasionally heartbreaking. But that shouldn't put us off. I think the commitment to using both academic and activist skills to achieve a better knowledge about disability and also achieve justice for people with disability in healthcare, and Family Search, and in the wider world. Thank you for having me. And thank you to Myles for having inspired these lectures.

Thanks for listening to this special miles little lecture episode of the sheet research podcast. You can find a transcript of Professor skellies talk LinkedIn this episode's notes. She pod is produced by she network and edited by Madeline Goldberger. You can find our other episodes on Spotify, radio, public anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye