The Future of Disability Bioethics

Transcript

• 00:00Good evening. My name is Mark Mercurio.
• 00:05I'm the director of the program for
• 00:06Biomedical Ethics at Yale School of Medicine,
• 00:08and it's my privilege to welcome you
• 00:10to our Evening Ethics seminar series.
• 00:13Tonight we have a presentation from
• 00:16Professor Joel Michael Reynolds.
• 00:19Professor Reynolds is an assistant
• 00:20professor of philosophy and disability
• 00:22Studies at Georgetown University,
• 00:24a senior research scholar at the
• 00:26Kennedy Institute of Ethics,
• 00:27a senior bioethics advisor to the
• 00:29Hastings Center, and a faculty
• 00:31scholar at the Greenwall Foundation.
• 00:34He's author of over 50 articles,
• 00:36chapters, and commentaries,
• 00:37and his work has appeared in the
• 00:39New England Journal of Medicine,
• 00:41a nature biotechnology,
• 00:42the AMA Journal of Ethics,
• 00:44and many others.
• 00:46He's in fact the founder of the
• 00:48Journal of Philosophy of Journal
• 00:50of Philosophy of Disability and the
• 00:52co-founder of the Oxford Studies
• 00:53of Disability Ethics and Society.
• 00:55This is of course on the subject
• 00:57of our session this evening on
• 00:59the future of disability ethics.
• 01:01Joel has a BA in philosophy and
• 01:04religious studies from the University
• 01:05of Oregon and an MA and PhD from
• 01:07Emory University and I'm delighted
• 01:09you could join us tonight.
• 01:11We brought Professor Reynolds here
• 01:12tonight because of his well known
• 01:14teaching expertise. Excellence.
• 01:15And so we brought him back to spend
• 01:17some time with our medical students
• 01:19and in conjunction with the trip,
• 01:20to come here and speak to this group.
• 01:21So we're very lucky to have him
• 01:23at the program tonight.
• 01:24This will go as it usually goes,
• 01:26my friends,
• 01:27which is that Joel will speak
• 01:29for about 45 minutes,
• 01:30after which we'll have an exchange and Q&A.
• 01:33The Q&A,
• 01:33the questions will come from the live
• 01:35audience as well as from the folks on zoom.
• 01:37I'll moderate that.
• 01:38If you have a question and
• 01:39you're here on zoom,
• 01:40I would ask you to send it in
• 01:42via the Q&A function on zoom,
• 01:43and I'll be reading those to
• 01:45Professor Reynolds.
• 01:46As we go along, and we will,
• 01:49we'll go until no later than 6:30.
• 01:52So if it's 6:30,
• 01:52there are still questions to be discussed.
• 01:54We will leave them for another time
• 01:56or perhaps for e-mail communications,
• 01:58but we'll wrap up by 6:30.
• 02:01And I think that's about all
• 02:02I need to say for right now,
• 02:04except it's asking to join me in
• 02:05welcoming Professor Joel Reynolds.
• 02:09No thanks.
• 02:13Hello everyone.
• 02:14It's a pleasure to be here.
• 02:15How's the the audio in the room?
• 02:18I in terms of accessibility,
• 02:20housekeeping if something is going
• 02:22wrong for our virtual audience,
• 02:24if something's going wrong in the room,
• 02:25obviously please, please interrupt me.
• 02:28I'm. I'm very honored to be here.
• 02:31It's it's a delight.
• 02:33I got to visit Yale last year and and
• 02:35now being back, it's even more fun.
• 02:38More talks, just working me like a horse.
• 02:40But that's all right.
• 02:42So I'd like to begin by noting that
• 02:44I have no conflicts of interest.
• 02:46I'm looking for them.
• 02:47I'd love to be conflicted,
• 02:48but so far I haven't found any.
• 02:51But one conflict is, of course,
• 02:53my love for my dear miniature dachshund
• 02:57schnarf, who's not with me today.
• 02:59I miss him.
• 03:00And in this image he's looking
• 03:02upwards from a paper of mine he
• 03:04edited that he clearly did not like.
• 03:06I decided not to submit it
• 03:09for publication at his advice.
• 03:12I would like to give a big thank you
• 03:15and shout out to all my fantastic
• 03:17colleagues and students and staff at
• 03:20the various places I work and advise
• 03:22for if the Hastings Center and the
• 03:24Greenwall Foundation in particular
• 03:26are not already on your radar,
• 03:28you should be following their
• 03:29newsletters and paying attention
• 03:30to what they're doing.
• 03:32Also the Kennedy Institute of Ethics,
• 03:34the really great work is coming
• 03:35out of those those places.
• 03:40Today's talk is set up
• 03:42in a three-part manner.
• 03:43There will be a very quick where are
• 03:46we at today with disability bioethics?
• 03:49There will be a longer how did we get here?
• 03:52And then I will end with what I hope is
• 03:56a provocative where do we go from here?
• 03:59What is the future of disability bioethics?
• 04:04Let's begin with where are we at?
• 04:09In January of 2021, a study came out
• 04:13in the journal Health Affairs that
• 04:17was done by Lisa Enzone i.e ZONI,
• 04:21who's a Harvard MD.
• 04:24This was a qualitative social
• 04:26scientific study of 714 practicing
• 04:29physicians in the United States.
• 04:31Various types of specialties and
• 04:35a number of questions were asked.
• 04:37It was all anonymized, of course,
• 04:39because the study design
• 04:42assumed that if people,
• 04:44people's identities were known,
• 04:45they would not be as honest
• 04:47about their feelings.
• 04:48And I highly recommend you
• 04:50read this entire study.
• 04:51It's it's fascinating,
• 04:52it's important.
• 04:53But I want to focus in the moment
• 04:56on one finding from this study,
• 04:58which is that 82% of the physicians
• 05:01surveyed suggested that people
• 05:04with significant disability,
• 05:06that was the qualifier.
• 05:07Have lower quality of life than
• 05:09those with non significant disability
• 05:11or those who are able bodied.
• 05:13And the problem with this particular
• 05:15finding is that is of course false.
• 05:18We've known that it's false.
• 05:20We've had now well over 3 decades
• 05:22of research suggesting that people
• 05:24with significant disability,
• 05:26people with all sorts of disabilities,
• 05:29report similar levels of quality of
• 05:31life as do comparatively able bodied people.
• 05:35This is such a famous problem
• 05:37in the social sciences.
• 05:38That it has gone under the moniker the
• 05:42disability Paradox since at least 1999,
• 05:44when Gary Albrecht and I always
• 05:48forget the second name Devlin.
• 05:51Albrecht and Devlieger DEVLIGER.
• 05:56Published a study,
• 05:58it was titled the Disability Paradox,
• 06:00and the way they framed it was like
• 06:03look intuitively one would expect.
• 06:05One would expect people with disabilities
• 06:07to have lower quality of life.
• 06:09That's not what the research
• 06:10shows what is going on here.
• 06:12And So what this study suggests to me.
• 06:14Granted,
• 06:14it's only in the end of 714 and there's
• 06:18all sorts of limitations on the design,
• 06:20but this study suggests that
• 06:21there is a disconnect,
• 06:23right between physicians understanding
• 06:25of the relationship between disability
• 06:28and quality of life and the social
• 06:31scientific evidence that has been
• 06:33studying this now for many decades.
• 06:35The problem is even worse,
• 06:36though, when you think about the
• 06:39legal ramifications of,
• 06:41or the legal implications of
• 06:43this sort of misunderstanding.
• 06:45The same team,
• 06:46pop,
• 06:47published a follow-up study eleven
• 06:48months later in the same journal,
• 06:51and this time they took a set of
• 06:55questions that were related specifically
• 06:56to the Americans with Disabilities Act.
• 06:58And as you might have already guessed,
• 07:01the findings were very worrisome.
• 07:03A majority of physicians.
• 07:05Did not know what their actual legal
• 07:07obligations were under the ADA.
• 07:09A significant portion answered
• 07:12incorrectly about who determines
• 07:15reasonable accommodation,
• 07:17and a significant percentage of them
• 07:20suggested that they felt they were a threat,
• 07:23that there was a worry that they
• 07:25might be sued under the ADA,
• 07:27and in that study it was also a
• 07:30significant percentage that simply
• 07:32admitted quite openly that they did not.
• 07:35Feel confident in their own ability
• 07:38as a practitioner to provide
• 07:40equal or equitable levels of care
• 07:43to their disabled patients.
• 07:45And one of the outcomes of this study
• 07:47also suggested further that those
• 07:49who did have confidence and their
• 07:51ability to provide that sort of care
• 07:53were less worried about lawsuits
• 07:55and also had views about disability
• 07:58and disabled patients that more
• 08:00closely track the actual research.
• 08:03So something's going on here, I think.
• 08:05Not simply about lack of information
• 08:08or misinformation or bias.
• 08:10I think that there's a whole ton of
• 08:13components at play and all suggest near
• 08:17the end of this talk further that those
• 08:20who look at these studies and think
• 08:22it's primarily a question of education,
• 08:24I think are getting this wrong.
• 08:26I don't think this is only about
• 08:29how physicians are being trained.
• 08:31I certainly don't think it's
• 08:33only about a bias.
• 08:34I also think there's a conceptual.
• 08:36Issue here.
• 08:36And that part of the problem is the
• 08:39category or concept of disability itself,
• 08:42and that we're we to have a more nuanced,
• 08:44dynamic, fuller,
• 08:46richer understanding of
• 08:47what disability means.
• 08:49That conceptual work itself
• 08:51would solve some of these issues,
• 08:54and I'll make that argument in a bit.
• 08:59So how did we get here?
• 09:00Well, one explanation,
• 09:01and this is by no means the only one,
• 09:04but if you look to research and
• 09:06critical disability studies,
• 09:07if you look to research in
• 09:10philosophy of disability,
• 09:11you'll see a lot of people saying
• 09:12that whatever is going on here,
• 09:141 issue is abelism.
• 09:15This is a term that in the last
• 09:18I think decade to maybe 15
• 09:20years is a more common parlance,
• 09:22but it's still not super well known.
• 09:25So I want to take a moment to
• 09:26just give you a definition.
• 09:28As with other isms, racism,
• 09:31sexism, you name it.
• 09:32Scholars who study these things,
• 09:34whether in the humanities or social sciences,
• 09:37don't agree on the precise definition.
• 09:40But that is not our that is
• 09:42not an issue for tonight.
• 09:43We're just going to run with this definition.
• 09:47Abelism is the assumption that the standard
• 09:51or normal able body is in and of itself
• 09:55better than non standard or abnormal forms.
• 09:58And it is. It refers to the discrimination,
• 10:02the oppressions, the disadvantages
• 10:04that result from that assumption.
• 10:06That's the definition I'm going to work
• 10:08with and suggest that we work with tonight.
• 10:11Now I want to note immediately
• 10:13that if you read this,
• 10:14especially if you focus on that.
• 10:163rd assumption.
• 10:17You might think this is about
• 10:20individual beliefs.
• 10:21This is about the cognition of
• 10:24individual actors.
• 10:25But all of the work on Abelism,
• 10:26similarly to a bunch of
• 10:28work on racism and sexism,
• 10:30suggests that is a narrow,
• 10:32far too narrow of an understanding
• 10:34of what abelism refers to.
• 10:35Because the discriminations and
• 10:37oppressions and question here
• 10:39that result affects the world.
• 10:42They affect how this room is built.
• 10:44They affect practices and.
• 10:47Habits and how institutions are shaped.
• 10:50And so I want to be very clear
• 10:52that abelism relates intimately
• 10:53to what we could distinguish.
• 10:55I think that inside of the definition
• 10:57of ableism is the structural component.
• 11:00But just for the sake of
• 11:02clarity and education,
• 11:03let's let's say that there's
• 11:05something like structural ableism,
• 11:07namely the systems.
• 11:10Practices,
• 11:11institutions,
• 11:12habits at the level of people
• 11:14or even groups that assume
• 11:16able bodied Ness as a default,
• 11:18as a norm,
• 11:19and that then thereby result in the exclusion
• 11:22and stigmatization of disabled people.
• 11:26And one of the,
• 11:27I think really important things
• 11:29to keep front and center when
• 11:31thinking about the problem of
• 11:33abelism is that if you are and or
• 11:36experience yourself as able bodied,
• 11:39you are going to benefit from
• 11:41that default assumption that
• 11:43the world is set up for you.
• 11:44And as a corollary.
• 11:46If we want to make the world less ableist,
• 11:51everyone needs to be on combating it.
• 11:55Everyone needs to commit themselves
• 11:56to being anti ableist in a very
• 11:59analogous manner to saying that
• 12:00not being racist is not enough.
• 12:02We all need to be anti racist in
• 12:04terms of our actions and practices
• 12:06if we want a world that where we
• 12:09have something like equity across
• 12:11various forms of racialization.
• 12:12So, in other words,
• 12:14combating the structures and habits and.
• 12:18Fill in the blank that support the
• 12:21unequal benefits along lines of ability.
• 12:23This takes ongoing effort on the
• 12:25part of individuals and communities.
• 12:28And at the end,
• 12:29I think I put this in the slides I
• 12:31I've written specifically about what
• 12:33it means to be a medical practitioner,
• 12:35whether you're working in the ER,
• 12:37whether you're in a dermatology
• 12:39clinic or whatever,
• 12:40what it means to combat these structures
• 12:42at the level of your practice.
• 12:44And I can give you those
• 12:45references if you'd like.
• 12:48Now, just because I am a philosopher by
• 12:51training and I like things being complex,
• 12:54I want to just give you a taste of how much
• 12:59more complicated the concept of abelism is.
• 13:04And one of my favorite favorite
• 13:06is the wrong adjective.
• 13:07One of the more insightful definitions
• 13:10of abelism I've ever run into is by
• 13:13a disability scholar and disability
• 13:16justice activist, Talila Lewis.
• 13:17And this is how I will not go into this,
• 13:21but I just want you to to see it.
• 13:23This is how Salila Lewis defines abelism.
• 13:27It is a system that places value on
• 13:30people's bodies and minds based on
• 13:34societally constructed ideas of normality,
• 13:37of intelligence, of excellence.
• 13:38What it is to excel at a given
• 13:42thing of desirability,
• 13:43I mean include who is
• 13:45considered attractive or not,
• 13:46and also productivity relative to
• 13:49the reigning economic forms of Labor,
• 13:51in our case capitalism.
• 13:53These constructed ideas are deeply
• 13:55rooted in anti blackness, eugenics.
• 13:58Misogyny, colonialism,
• 13:59imperialism and capitalism.
• 14:02And the receipts for that.
• 14:03By the way,
• 14:03I can give you a bunch of books by
• 14:06historians that show how what we think
• 14:08of the forms that abelism takes today.
• 14:11You have to tell a story about
• 14:13the transatlantic slave trade.
• 14:14You have to tell a story about
• 14:16histories of colonialism and
• 14:18imperialism to understand this stuff.
• 14:20Ellis Island is actually a really
• 14:22if you want something short and
• 14:23easy to to understand this point,
• 14:25go read.
• 14:27Disabled upon arrival by Jay Dolmage,
• 14:31which is this fascinating study of
• 14:33Ellis Island.
• 14:34And there you see very clearly how
• 14:37forms of racialization and explicit
• 14:39racism are combined with ableism and
• 14:42sexism and ethno nationalism that
• 14:44then quite literally determines who
• 14:47is judged to be a citizen or not,
• 14:49who is kicked off the island,
• 14:52who is, you know, all this stuff.
• 14:54Really, really good study again, that was.
• 14:57Disabled upon arrival by Jay Dolmage DOLMAGE.
• 15:02I digress.
• 15:05Louis continues the form
• 15:07of systemic oppression.
• 15:08This form of systemic oppression leads
• 15:11to people in society determining who is
• 15:14valuable and worthy based on variously,
• 15:17a person's language,
• 15:18their appearance, their religion,
• 15:20and or their ability to satisfactorily
• 15:23reproduce, excel, and behave.
• 15:24And I I love this kicker at the end.
• 15:27This is some people don't
• 15:29find this intuitive.
• 15:30I think it's absolutely correct,
• 15:31though you don't have to
• 15:33be disabled to experience.
• 15:34Cabalism.
• 15:38You can teach a whole graduate
• 15:39seminar just on these two paragraphs.
• 15:41So again, I'm not going to go into
• 15:42all this, but I just want to.
• 15:44I want to throw it out
• 15:45there for you to chew upon.
• 15:50So I said that this section of
• 15:52the talk was how did we get here?
• 15:54Well, I could tell you a story that goes
• 15:56back at least as far as ancient Greece,
• 15:59if we assume that ancient Greece
• 16:00is at the beginning of the
• 16:02Western intellectual tradition,
• 16:03which of course is a racist story told
• 16:05by the Germans in the 19th century
• 16:07to establish their Aryan supremacy.
• 16:09The Greeks are Middle Eastern
• 16:11and North African.
• 16:12Anyway, don't get me started.
• 16:14I could tell you a story about,
• 16:15for example, Socrates saying on his deathbed.
• 16:18Yeah, he's three days away from
• 16:20drinking the hemlock and he says his
• 16:22life worth living in a body that's
• 16:24in a bad and corrupted condition.
• 16:25And his friend Criado replies it's
• 16:27a single word in the Greek adamus.
• 16:29In no way I can link that story to a
• 16:32bunch of medieval thinkers and modern
• 16:35thinkers that could do all this stuff.
• 16:38But alas,
• 16:38this is not a history of philosophy
• 16:40class and you will all want to
• 16:42leave immediately if I do that.
• 16:44So instead I'm going to Fast
• 16:47forward to the 20th century, 1927.
• 16:49In the United States of America,
• 16:52right around the time that Hitler
• 16:54was very closely watching the
• 16:56policies that we were enacting,
• 16:58especially in the Jim Crow
• 17:00S but across the country,
• 17:01very closely watching the UK.
• 17:03And if you know anything about
• 17:05the Third Reich and many of the
• 17:08developments that they instituted,
• 17:10he explicitly states that he took most
• 17:12of the his ideas from the US and UK,
• 17:15right?
• 17:16That is where eugenics in the
• 17:18pejorative sense of the term starts.
• 17:21Here's an example of it,
• 17:22Justice Oliver Wendell Holmes junior,
• 17:26who wrote the majority opinion of
• 17:28this Supreme Court case, said.
• 17:30We've seen more than once that the
• 17:33public welfare may call upon the
• 17:35best citizens for their lives,
• 17:37as in a draft, for example.
• 17:40It'd be strange if it could not
• 17:42call upon those who already sapped
• 17:43the strength of the state for
• 17:45these lesser sacrifices.
• 17:47It's better for all the world if society
• 17:50can prevent those who are manifestly
• 17:52unfit from continuing their kind.
• 17:553 generations of imbeciles are enough,
• 17:58and with the Supreme Court decision,
• 18:00it became law.
• 18:02That,
• 18:03uh,
• 18:03people with uteruses who were wards of
• 18:06the state could be forcibly sterilized.
• 18:10Now it's jumped to 1980.
• 18:13You might have heard of Peter Singer.
• 18:15He is certainly one of the most famous
• 18:17philosophers alive, and certainly.
• 18:21In many circles, considered one of the
• 18:23most preeminent ethicists, in 1980 he
• 18:25wrote a book called Practical Ethics,
• 18:27in which he argued that killing
• 18:30a disabled infant is not morally
• 18:33equivalent to killing a person.
• 18:36On seniors view moral worth?
• 18:39Is a question of the sort of
• 18:42capacities an Organism has capacities,
• 18:44including reason,
• 18:45and in so far as a disabled infant,
• 18:48perhaps one that has severe to
• 18:51profound cognitive impairments,
• 18:52does not have those capacities,
• 18:54they do not have moral worth.
• 18:56This utilitarian way of looking at
• 18:59things has had a massive impact in
• 19:04everything from debates over resource
• 19:07allocation to decision decision making in.
• 19:13Antenatal and prenatal and care,
• 19:15all of this stuff.
• 19:16This is this.
• 19:16This is an idea that has not gone anywhere.
• 19:22But note so far up until this point.
• 19:27These examples, Socrates example,
• 19:29the Supreme Court example,
• 19:31the Peter Singer example.
• 19:33These are able bodied people,
• 19:35putatively able bodied people making
• 19:38judgments about disabled people, right,
• 19:40and making judgments about disability.
• 19:42What would happen if, I don't know,
• 19:44we listened to disabled people's
• 19:46testimony about their own lives
• 19:48and their own experience.
• 19:49What might we find out?
• 19:52Well, you might find out, for example.
• 19:54That there are many people who are deaf.
• 19:57This is more so true of people who are
• 20:00cognitively deaf than those where it
• 20:02happens later in life who understand
• 20:04themselves not as not hearing.
• 20:06They're deafness is not in
• 20:08terms of audiological loss.
• 20:10Their deafness is in terms of the
• 20:12gain of being part of communities
• 20:14who speak the same language as them,
• 20:17namely who speak American Sign
• 20:20Language or British Sign Language.
• 20:23This is often.
• 20:24This will often be referred to this
• 20:26way of thinking about deafness with a
• 20:29capital D deaf and there is deaf pride,
• 20:31there is deaf cultural movements,
• 20:34deaf history, there's deaf music.
• 20:36There's all of this stuff based
• 20:38around the use of sign language
• 20:40as we have happening tonight,
• 20:42though you can't see it,
• 20:43but our virtual audience can see it,
• 20:45based around the use of sign language as
• 20:48an anchoring formation for for groups
• 20:51to come together and communicate and.
• 20:54People who understand deafness in
• 20:56this way will make arguments such as
• 21:00if I Joel took a flight to France.
• 21:04And I'm walking around Paris
• 21:06and I I can read French,
• 21:08but I can't speak it.
• 21:09It'd be really weird to say I'm disabled.
• 21:12Just because I can't speak the language.
• 21:16I speak English,
• 21:16I just don't speak French in the
• 21:18same way someone who understands
• 21:20deafness in this manner will
• 21:21say it's really weird to say I'm
• 21:23disabled just because I speak ASL
• 21:25and I don't use some other form of
• 21:28communication as my primary modality.
• 21:31Now this gets very complicated.
• 21:33As you might imagine,
• 21:35people who experience hearing
• 21:38loss later in life,
• 21:39they were not born into
• 21:41deafness in a certain way.
• 21:43They are going to many will experience.
• 21:47Loss.
• 21:48The transition into signing
• 21:50communities is going to be
• 21:52complicated for a host of reasons.
• 21:55There are also very complicated,
• 21:58serious debates over the use of
• 22:00things like cochlear implants.
• 22:02There's a lot of good research on this,
• 22:04but if you would like to learn more,
• 22:06one one among many texts I would
• 22:09suggest is a book called made to
• 22:13here by Laura Malden Mauldin.
• 22:16This is complicated.
• 22:17So that's my main point.
• 22:19This is complicated,
• 22:20but already right off the bat here
• 22:23we have one example of by actually
• 22:25listening to the testimony of this
• 22:27particular group of disabled people,
• 22:29it changes.
• 22:31It really changes default assumptions
• 22:34about what it its meaning is.
• 22:37Here's another example.
• 22:39Do people recognize the the
• 22:41person on the screen?
• 22:45So this is a I'll do a audio
• 22:47description of this image.
• 22:48This is of a person named Oscar Pistorius.
• 22:51He's in what looks like
• 22:53stereotypical sprinting gear,
• 22:55but then from both of his knees downwards
• 22:57you see a prosthetic, a very sleek,
• 23:00futuristic looking prosthetic.
• 23:02These were nicknamed Cheetah Blades.
• 23:04The reason I bring up Oscar Pistorius is
• 23:07because he was banned from participating
• 23:10in the Regular Olympics because
• 23:12he was seen to have an advantage.
• 23:15Not because he was disabled in some
• 23:18sense of difference or or loss.
• 23:19He had a lower metabolic cost
• 23:22because of how effective and well
• 23:24designed the cheetah blades were.
• 23:26And they were like, no,
• 23:27you can't you can't you, you.
• 23:29It's kind of a superhuman ability.
• 23:31Your cheetah blades,
• 23:32you can't be in the regular Olympics.
• 23:34And the reason I think this example is so
• 23:37powerful is it viscerally demonstrates.
• 23:40How the humans interaction with
• 23:42technologies whether more narrowly
• 23:44thought of biomedical technologies,
• 23:47that's usually how we think
• 23:49about prosthetics.
• 23:49Think about something as simple
• 23:51as text to speech,
• 23:52which I use on my phone constantly
• 23:54because it's convenient.
• 23:55But you know,
• 23:56if you don't have both arms,
• 23:58that doesn't keep you from doing office work.
• 23:59There's dragon.
• 24:00There's all these software programs you can
• 24:03just talk and stuff will be typed out anyway.
• 24:06The point is that there is a flexibility,
• 24:09a malleability.
• 24:09Um,
• 24:10to the meaning of disability
• 24:11that is always in relationship
• 24:13with the technologies we have,
• 24:15not just the environment but
• 24:17a development of technologies.
• 24:22Here's another example.
• 24:23There are some people who are blind.
• 24:27Who? Understand themselves as seen.
• 24:31As having sight not site like I
• 24:33have but they are still able to
• 24:36navigate the world very much as well,
• 24:38in some cases better than I
• 24:41can using these two orbs.
• 24:43Rod Michalko, a a famous kind of first
• 24:48generation disability studies scholar,
• 24:50here is a a picture of him with his
• 24:52seeing eye dog smoking and one of the
• 24:55things you will see if you read his
• 24:57work and also listen to his testimony
• 24:59is that he experiences the world.
• 25:02As one that is filled with seeing things,
• 25:04it's just seeing through his
• 25:07interactions with his dog.
• 25:08To push this a step further,
• 25:10there are some people, this is,
• 25:13I don't know what the statistics are in
• 25:15terms of the overall blind community,
• 25:17but there are some people who
• 25:18are blind who can echo locate,
• 25:20who can use clicking sounds to navigate
• 25:22the world again about as well as I do.
• 25:24There are blind people who ride bicycles.
• 25:26There are whatever.
• 25:27And this is not meant.
• 25:28I'm not saying this is some like
• 25:30inspirationally like ooh yay,
• 25:32I'm saying this.
• 25:33Has the fact that by default.
• 25:36Ablist assumptions would lead us
• 25:38to think of blindness merely.
• 25:41As lack of sight merely as loss
• 25:43and maybe even suffering coming
• 25:45along with the inability to see by
• 25:48actually talking to blind people,
• 25:50you'll see that the story is
• 25:52much more complicated.
• 25:53Story is far more complicated than that.
• 25:56Again,
• 25:56this does not mean there might be
• 25:58someone you know later in life where
• 26:00you know they become blind through
• 26:02some traumatic event and they're
• 26:03going to experience that as a loss.
• 26:05It's going to be really, really ******.
• 26:07I would certainly have a difficult
• 26:10transition if I were to become.
• 26:11Blind tomorrow?
• 26:13That's not my point.
• 26:15Whether things are congenital or not,
• 26:17when they happen, how they happen,
• 26:18this all is going to play a role certainly.
• 26:23Last example. Thankfully,
• 26:25the the kind of concept of neurodiversity
• 26:28and exposure to the neurodiversity movement
• 26:31seems to be gaining a lot of steam,
• 26:34and not just in the US, but globally.
• 26:36And more and more people who,
• 26:38for example, identify as autistic will
• 26:42talk about the ways in which they do
• 26:45not view autism as a deficit, right?
• 26:48They do not view autism as a disorder,
• 26:51they view it as a difference.
• 26:53And the ways in which they are different
• 26:56they wish would be more accepted and
• 26:58worked with in kind of the general world.
• 27:00Now as you've noticed, I always say
• 27:02there are complications to this, right?
• 27:04There are some forms of neurodiversity
• 27:06that we would very readily describe in
• 27:09terms of something like mental illness.
• 27:11There are some forms of neurodiversity
• 27:13where someone would say,
• 27:14I absolutely want medication for this,
• 27:16I want therapy, whatever.
• 27:17This is not to throw out the
• 27:19baby with the bathwater.
• 27:21It's just to say that the
• 27:22way that we think about.
• 27:24Um, cognitive differences,
• 27:26behavioral differences and whatnot.
• 27:29It is much more complex than might meet
• 27:31the eye if a default ablist assumption
• 27:34of normal abnormal is what's operative.
• 27:42So note that this has already come out a bit.
• 27:47And what I've said, that many of the
• 27:50problems people with disabilities do report
• 27:53about their lives aren't necessarily,
• 27:55or certainly aren't always,
• 27:56about their bodies or minds,
• 27:59but about the social environment,
• 28:01about the responses people give them,
• 28:03about how things are built or not built.
• 28:06They're about accessibility.
• 28:07They're about stigma, they're about
• 28:10labor and education opportunities, etc.
• 28:12And disability activists created many,
• 28:15many years ago.
• 28:18A simple and powerful distinction
• 28:20to correct these assumptions,
• 28:21and I want to be very clear that what I'm
• 28:24about to present is ultimately a heuristic.
• 28:26This is a tool to kind of
• 28:28see the world differently,
• 28:29but it is overly simplified on purpose.
• 28:34Disability activists and theorists
• 28:35will distinguish between,
• 28:36on the one hand, the quote.
• 28:38UN quote.
• 28:39Medical model of disability,
• 28:41which is what I would bet $1,000,000
• 28:44you all learned growing up.
• 28:46I learned this growing up,
• 28:48which is that all disability means
• 28:50is some sort of individual tragedy,
• 28:52misfortune,
• 28:53or problem of someone's body or mind.
• 28:56Maybe it's due to genetics,
• 28:57maybe it's due to an accident.
• 28:58Whatever it is,
• 29:00that's what disability refers to.
• 29:02They distinguish between this
• 29:04medical model of disability and
• 29:05what is called the social model.
• 29:07There are actually social models, plural.
• 29:09But will not get into that.
• 29:12On this model,
• 29:14disability refers to the negative effects
• 29:17caused by responses to impairment.
• 29:20Now, if you're paying attention closely,
• 29:22you'll notice I just introduced
• 29:23a new concept.
• 29:24You'll say, Joel, what does impairment mean?
• 29:27I'm one step ahead of you.
• 29:28On the social model,
• 29:30impairment refers to a typicality.
• 29:32Yes, you could even say abnormalities.
• 29:37Atypical differences. Let's go with.
• 29:40Of ones body and mind disability refers
• 29:44to responses to ones impairment.
• 29:48Now if this isn't clicking, let's use.
• 29:50Forgive how simple this example is,
• 29:52but I I hope that this will just make
• 29:54the idea fully crystallize in your mind.
• 29:57I I have up on the screen here an image
• 30:00of a person utilizing a wheelchair who is
• 30:03sitting at the bottom of what looks like
• 30:06a very long flight of concrete stairs,
• 30:09now on a medical model of disability.
• 30:12What do you see occurring in this image?
• 30:19I need to take a drink of water,
• 30:20so I will wait for someone to raise
• 30:22their hand and answer it. Yeah, mark.
• 30:27You can't get up the stairs. You can't.
• 30:30Exactly. On a medical model,
• 30:32what we see here is someone has a body or
• 30:35mind that for some reason there is a problem,
• 30:39there's something going wrong such
• 30:40that they can't use the stairs.
• 30:42We don't know if it's a spinal issue,
• 30:43we don't know if they have
• 30:45chronic fatigue syndrome,
• 30:46we don't know what it is,
• 30:46but something is wrong with their body
• 30:49and or mind and on a social model.
• 30:52How would we interpret this image?
• 30:54What do we see here? He can't get up.
• 30:59There's no man.
• 31:01Yeah, and a social model,
• 31:03we can say people,
• 31:05probably a group of people,
• 31:07decided that to get from point
• 31:09A to point B over this incline,
• 31:12they would spend a lot of
• 31:14money and a lot of use,
• 31:16a lot of concrete in order to only
• 31:19make that that traversal accessible
• 31:21for those who are ambulatory in
• 31:24a in a in a stereotypical sense.
• 31:28And I don't know how many of you
• 31:29have experienced in construction.
• 31:30It would not have cost that much more,
• 31:32if anything,
• 31:33to not use these stairs and
• 31:34have some sort of ramp.
• 31:36It's not that high of an incline.
• 31:38There's a lot of concrete there.
• 31:39This was a conscious decision
• 31:41to afford that space for certain
• 31:44bodies and not others.
• 31:46Now again,
• 31:47forgive how simple the this contrast is.
• 31:53Politically powerful things are
• 31:54often quite simple in form,
• 31:56and we wouldn't even have the
• 31:58Americans with Disabilities Act
• 31:59without the distinction between
• 32:00the medical and social model.
• 32:01So it's simplicity highway,
• 32:03it's simplicity is great.
• 32:04But note how wildly different of a
• 32:08framework of interpretation of this
• 32:10extremely simple scene is the moment
• 32:12you have this distinction in your hands,
• 32:14you see it wildly differently,
• 32:17and of course,
• 32:18as will become very clear.
• 32:20Near the end of the talk,
• 32:22the point is not that one of these
• 32:24is right and one of these is wrong.
• 32:26I can bet you $1000 that the
• 32:27person in the wheelchair when if
• 32:29they show up in the emergency room
• 32:31and they're having sores due to a
• 32:33****** wheelchair due to whatever,
• 32:34they would really like the medical
• 32:37model to be used to assess
• 32:38the ulcers or whatever.
• 32:40And if they break their arm,
• 32:41please use the medical model.
• 32:42Think about this as an individual
• 32:44problem of body mind.
• 32:45This is not an either or.
• 32:47This is about framing.
• 32:48This is about in certain circumstances.
• 32:51The medical model is an appropriate
• 32:53way to think about disability
• 32:55in other circumstances.
• 32:56It really misses the forest for the
• 32:58trees and we need a social model in
• 33:00order to understand what's happening
• 33:02and in order to interpret people's.
• 33:07How they are experiencing their lives,
• 33:09what their lived experience is actually like.
• 33:17And I think that now you can see hopefully.
• 33:22Pretty clearly how ableism.
• 33:25Against our better angels,
• 33:28you know unwittingly,
• 33:29Abelism can lead people.
• 33:31Into thinking that disability
• 33:33is experienced similarly,
• 33:35namely as negative and one,
• 33:38I'll give you one more kind
• 33:40of conceptual tool to use.
• 33:41I refer to this as the
• 33:44ablest conflation right,
• 33:45the assumption that disability
• 33:47comes along with pain and suffering,
• 33:50or a bit more technically,
• 33:52the assumption that experiences of
• 33:54disability will necessarily also be
• 33:57experiences of pain and suffering.
• 33:59And I think this is exactly what you see.
• 34:02In Socrates.
• 34:03Rhetorical question.
• 34:04What's that?
• 34:08Thank you. Thank you.
• 34:10Yes, I get excited as I get going
• 34:12and then I talk to you fast.
• 34:13So yeah, thank you.
• 34:18I think you see the ablist
• 34:20conflation at work in Socrates
• 34:22rhetorical question.
• 34:24You see it at work in the
• 34:27Supreme Court decision,
• 34:28and you certainly see it
• 34:29at work in Peter Singer's
• 34:31argument mentioned earlier.
• 34:37So that's where we are.
• 34:39I think in terms of disability bioethics,
• 34:41we have now a rich set of resources,
• 34:4650 years of disability studies,
• 34:4830 years of philosophy of disability.
• 34:5170 years of disability activism that
• 34:54allows us to tackle and identify
• 34:57the problem of abelism and be more,
• 35:00let's say, nuanced and capacious
• 35:02with how we think about disability.
• 35:06I don't think this is,
• 35:07uh integrated enough into medical education.
• 35:12I don't think it's integrated
• 35:13enough into public perception.
• 35:14But strides are being made.
• 35:16The fact that I'm here is actually evidence
• 35:19of some strides being made on that front.
• 35:22But I want to end tonight by
• 35:24thinking about where do we go,
• 35:26what is the future of,
• 35:27of disability bioethics.
• 35:28And I want to suggest to you that one
• 35:31thing that is standing in the way of
• 35:34progression concerning thinking about.
• 35:36Disability is this perennial
• 35:38fact that no matter how.
• 35:41Progressive and how open minded
• 35:44you are about disability.
• 35:46There seem to be these cases.
• 35:49Of forms of disability where the suffering
• 35:53is actually part of the impairment itself.
• 35:56And this has been talked about
• 35:58for well over 20 years now.
• 36:00I'm quoting a book.
• 36:03Fantastic book from 1996 by Susan
• 36:06Wendell called the rejected body,
• 36:07and she refers to this as the problem of
• 36:11suffering that justice cannot eliminate.
• 36:13Even in a.
• 36:15Some hypothetical utopic world where there
• 36:17is no ableism, no racism, no sexism.
• 36:20There are some forms of suffering.
• 36:23That would still occur.
• 36:25So this argument goes.
• 36:27Think about, let me give you an example.
• 36:29Neuropathic pain.
• 36:31Right.
• 36:33Presumably,
• 36:33let's assume that heaven was a perfect place,
• 36:37but heaven doesn't have the tools
• 36:39to deal with neuropathic pain,
• 36:40and now this is sounding weird.
• 36:42The point is,
• 36:43even in a perfectly we could organize
• 36:46societally society as ideally as possible,
• 36:50neuropathic pain sucks,
• 36:52and we need biomedical interventions
• 36:54in order to address it,
• 36:57ideally at the level of the underlying cause,
• 36:59but at minimum symptomatically,
• 37:01Wendell is thinking.
• 37:03Not simply about neuropathic pain,
• 37:05but in in this book,
• 37:06she's thinking about severe forms
• 37:09of chronic illness and severe
• 37:11forms of chronic pain,
• 37:13like chronic pain sufferers.
• 37:14And one of her arguments in this book is
• 37:18that disability studies disability theory.
• 37:20And disability activism have
• 37:23often excluded people who live in
• 37:26chronic pain because it doesn't
• 37:28fit the story that people want
• 37:31to tell about the social model.
• 37:36And I think that I'm just going to call
• 37:39this issue the hard problem of disability.
• 37:42How do we include, how do we not
• 37:44leave out people with chronic pain?
• 37:47How do we, uh, have the tent be wide enough?
• 37:51I think this relates directly to what
• 37:54I started this talk with this issue
• 37:57of the very problematic relationship
• 37:59between disability and quality of life,
• 38:02and how misjudgments and assumptions
• 38:04about it seem to, in various ways,
• 38:08track disability health disparities
• 38:09not simply in narrow clinical context,
• 38:12but even at the level of public
• 38:15health policy decisions.
• 38:19And I want to suggest that one way
• 38:22forward through this problem is,
• 38:24is to hold tightly,
• 38:27is to grip onto an insight that
• 38:29Elizabeth Barnes in her fantastic book
• 38:32the minority Body that came out in 2016.
• 38:37She puts it like this.
• 38:39She says there is nothing about what
• 38:42disabled bodies are like that by itself.
• 38:46In and of itself unifies or
• 38:49explains the category of disability.
• 38:52I think this is a very powerful insight
• 38:54and I think that all of the research,
• 38:57social, scientific, humanistic,
• 38:58you name it, bears this out.
• 39:00But think about where this leaves us.
• 39:04What, then,
• 39:05unifies the concept of disability?
• 39:08What can explain how we use it in the world?
• 39:11Does it actually just refer to
• 39:14nothing and if it doesn't refer to a
• 39:17coherent set of things in the world?
• 39:20Then what is the fate of the Americans
• 39:22with Disabilities Act,
• 39:23which, by the way,
• 39:25requires we pick out a concrete set
• 39:27of things that count as disabilities?
• 39:30What happens to any number of?
• 39:35Spaces within biomedicine.
• 39:37If we can't point to either disability
• 39:41in general or forms of disability,
• 39:43it seems like they're not being
• 39:46unity to the concept. Is bad.
• 39:48Bad in the sense of it gets in the way
• 39:50of things we want to do in the world.
• 39:52It has very worrisome implications.
• 39:57Well, Barnes is very sensitive to this issue,
• 40:00and this will seem very odd to you.
• 40:02This formulation will seem very strange if
• 40:05you're not used to reading certain types
• 40:07of analytic Anglo American philosophy,
• 40:09so bear with me, please.
• 40:11Barnes gets around this problem
• 40:13by trying to give a definition of
• 40:16disability that centrally relates it
• 40:18to the disability rights movement.
• 40:21Here's how she sets up her definition.
• 40:24She says a person S is physically
• 40:27disabled in some context.
• 40:28See if and only if first S is
• 40:32in some bodily state X.
• 40:35Two, and here's the juicy bit,
• 40:37the rules for making judgments
• 40:40about solidarity.
• 40:41As employed by the disability rates movement.
• 40:45Classify X in context C.
• 40:49As among the physical conditions that
• 40:51they're seeking to promote justice for.
• 40:55This is why you never let
• 40:57philosophers write bumper stickers.
• 40:58We just can't. We can't do it.
• 41:03Or run political campaigns, for that matter.
• 41:10So there is something very
• 41:11powerful about this and I want
• 41:14to be very clear that tacking.
• 41:16Or tracking the meaning of
• 41:18disability to the understanding
• 41:20that disability rights movements
• 41:22she knows there's no one movement,
• 41:25it's plural movements are using.
• 41:27I find this. Politically interesting.
• 41:31I think it's philosophically interesting.
• 41:34There's something going on here.
• 41:35I think that's great.
• 41:37But this can't be the end of the story,
• 41:40first of all.
• 41:41Barnes and you'll note in the
• 41:44language she's like psychological
• 41:46disabilities are too complicated.
• 41:48I'm just not going to talk about it.
• 41:51I can't handle a definition of
• 41:52disability that can't talk about
• 41:54psychological disabilities.
• 41:55So already right there, I'm like,
• 41:57no, this isn't going to work.
• 41:58To note that this is unable to
• 42:02explain anything about disability
• 42:04prior to about 1957.
• 42:06Because there were no disability rights
• 42:09movements in any plausible sense of the term,
• 42:12and I get a little bit uncomfort,
• 42:14the historian in me gets uncomfortable.
• 42:16If I have a definition of a phenomenon
• 42:18where we can clearly pick out the
• 42:21group and say 1920 or 1870 or 1890,
• 42:25and our definition can't say
• 42:27anything about it, that worries me.
• 42:30Um.
• 42:32Also.
• 42:33The disability rights movement has
• 42:35not done a good job of picking out
• 42:39and representing all disabled people.
• 42:42I already mentioned that people
• 42:43with chronic illness and chronic
• 42:45pain have been left out.
• 42:46Disability rights movements in the
• 42:48US and UK have largely been white
• 42:51movements that have ignored and quite
• 42:54actively excluded communities of color.
• 42:57There's there's all sorts of
• 42:59exclusions going on here by focusing
• 43:01on the disability rights movement,
• 43:03even though at first blush.
• 43:04You might think, well,
• 43:06certainly this has to be better.
• 43:08The critiques that just gave of of
• 43:10Barnes that none of these ideas are mine.
• 43:12This has all been hashed out in the
• 43:14literature and philosophy of disability
• 43:15over the last five or six years,
• 43:17but I just wanted to kind of repeat them
• 43:19because they're worth thinking about.
• 43:23I will not actually run you through this,
• 43:26but I said it's been hashed
• 43:27out in the literature.
• 43:28I meant it. Here's my receipts.
• 43:31People have been like, wow,
• 43:32what if we tweak the view this way?
• 43:34Maybe we can do this.
• 43:35Hey, maybe let's just give up on
• 43:37the idea that disability actually
• 43:38refers to anything in the world.
• 43:40It's just a heuristic tool.
• 43:42It's a fuzzy concept.
• 43:44There's all sorts of answers.
• 43:46And I find this work.
• 43:48I teach this work all the time.
• 43:49I think it's great.
• 43:51But I think none of these.
• 43:54Scholars give a satisfactory answer,
• 43:56at least not for me.
• 43:59And here's why.
• 44:00All the theories I think cannot get
• 44:02over I've got lots of problems in this
• 44:04talk today we got the hard problem,
• 44:06the range problem.
• 44:07They can't get over what
• 44:09I call the range problem.
• 44:11They do not pick out a defensible set
• 44:14of paradigmatic cases of disability,
• 44:16right?
• 44:17If you cannot talk about chronic pain,
• 44:19that just you don't have a good theory,
• 44:21for example,
• 44:22they also,
• 44:22and here's a bit of A twist
• 44:24that I am introducing that
• 44:26these other scholars haven't,
• 44:28I also think they can't even explain
• 44:30a satisfactory set of the ways we
• 44:33use the concept linguistically,
• 44:35not just at the level of utterances,
• 44:37but also like illocutionary like
• 44:39performances like or performances
• 44:41in the technical sense.
• 44:42When you go into the SSDI
• 44:44office and then you,
• 44:46they say you are disabled in the
• 44:48sense that now you get services.
• 44:49Something is happening there
• 44:51beyond the mere utterance that
• 44:53your legal status is changing.
• 44:55I don't think these theories
• 44:57can actually explain that,
• 44:58and that worries me.
• 44:59We should probably be able to capture,
• 45:01if we have a good theory, the basic.
• 45:05Ways in which we use the concept.
• 45:07There's my kind of pragmatist
• 45:09leanings there coming out.
• 45:13But the problem is really deep.
• 45:17How am I doing on time? Oh perfect.
• 45:20I'm not going to go through
• 45:22all three of these examples.
• 45:24Let's do, I'll do.
• 45:25I already talked a bit about deafness.
• 45:27Let's I'll do the second one,
• 45:29Down syndrome.
• 45:31And infantile Tay Sachs.
• 45:35Over the last 40 to 50 years,
• 45:38the life expectancy of people
• 45:40with Down syndrome has doubled.
• 45:42More than doubled actually,
• 45:43depending upon the statistics.
• 45:45You look at the the sorts of lives that
• 45:50people with Down syndrome lead often are
• 45:53now even fuller than they were before.
• 45:56And the idea that someone with Down
• 45:58syndrome will lead a life of of
• 46:00suffering or or have issues is just not,
• 46:02you know, that is that is an artifact.
• 46:04Of a previous time, yes,
• 46:06it is true that there is a statistically
• 46:10significant proportion of people with
• 46:12Down syndrome who will have particular
• 46:14cardiovascular issues if they are
• 46:16born in a place that has a good as
• 46:19good cardiology options for them.
• 46:21These are increasingly things that
• 46:23can be addressed early on often
• 46:25don't necessarily get in the way
• 46:27of living a full life.
• 46:29And interestingly,
• 46:30and in my view, most importantly.
• 46:33The actual testimony of people who
• 46:36have Down syndrome is that they enjoy
• 46:40being alive and living their life and
• 46:43they enjoy the way that they are.
• 46:45And this is the again,
• 46:47let me double down on the social
• 46:49scientific research about quality of life.
• 46:51This is not an unusual thing to hear.
• 46:54This is the norm that we hear in
• 46:57study after study after study.
• 47:00Contrast Down syndrome.
• 47:02Understood as a case.
• 47:04Perhaps a paradigmatic case of disability?
• 47:08With infantile Tay-sachs.
• 47:09Right. We have no way to treat
• 47:13the underlying disease.
• 47:15In over 90% of the cases,
• 47:17the child is going to die by the age of four.
• 47:19They're going to live in significant,
• 47:22significant pain and are symptomatic
• 47:24approaches to that pain or,
• 47:27I don't think, remotely sufficient.
• 47:29If you do not produce the enzyme hexa,
• 47:32hexa, whatever the full version of it is,
• 47:34if you do not produce that enzyme,
• 47:36life is going to be extremely difficult.
• 47:38There's just currently with the
• 47:41current state of biomedical knowledge.
• 47:43There's no way around this.
• 47:46That is also a form of disability.
• 47:50What work is the concept
• 47:52of disability doing that?
• 47:53Both of those cases are
• 47:55under the same umbrella.
• 47:56They seem wildly, wildly distinct.
• 48:01They're distinct in terms of longevity,
• 48:03mortality and mobility.
• 48:04They're distinct in terms of quality of life.
• 48:07They're distinct like I cannot stress
• 48:10enough how wildly different Down
• 48:13syndrome is from infantile Tay Sachs.
• 48:17And yet. Maybe one reason why most
• 48:21of the providers in that study.
• 48:24Said people with significant
• 48:26disability have lower quality of
• 48:28life is because they what popped into
• 48:30their head was infantile Tay Sachs.
• 48:33And if that's what pops in
• 48:35as the paradigm example,
• 48:36of course they're going to answer that way.
• 48:38If by contrast,
• 48:40what popped into their ones head.
• 48:43Was Down syndrome,
• 48:44and further the practitioner in
• 48:46question knows the data about
• 48:48people with Down syndrome.
• 48:49You say, oh,
• 48:50of course they have similar quality of life,
• 48:52not lower.
• 48:53But that's not part of the study.
• 48:55The study just used significant disability.
• 48:58That's as that's as far as the concept
• 49:02was broken down and my hypothesis.
• 49:06And I just got a grant to
• 49:07actually test the hypothesis.
• 49:11My hypothesis is that a significant
• 49:13issue here is purely conceptual.
• 49:16We have to have a more nuanced taxonomy,
• 49:19and we need a better theory of disability.
• 49:23To be able to explain why we should count
• 49:27all of these things in one umbrella.
• 49:30And here's my solution.
• 49:32I'm not going to actually go through this.
• 49:36But if you're interested, I'll send you
• 49:38the slides or talk about this further.
• 49:40A an additional issue here is
• 49:41that I think the people who have
• 49:43been theorizing about disability,
• 49:45whether they are MD's,
• 49:47whether they are PHD's.
• 49:50J's or disability activists,
• 49:51their understanding of what a good theory
• 49:54of disability must do has been too narrow.
• 49:57And this slide just goes through
• 49:59all the things I think a theory
• 50:00of disability must do.
• 50:01But it would take me like 10
• 50:03minutes to talk through this.
• 50:04So I'm just, I'm going to move on.
• 50:07Here's here's the solution I think.
• 50:10Here is my theory of disability.
• 50:12When we deploy the concept,
• 50:15we are doing so to provide reasons.
• 50:19To structure relations in ways that will,
• 50:23I repeated the word provide bad writing,
• 50:25sorry,
• 50:26that will provide or improve flourishing
• 50:29across ability and capacity states.
• 50:33What disability is doing,
• 50:35ultimately, as a concept,
• 50:36it is a tool for us to give reasons.
• 50:40To make changes in how we
• 50:42structure relationships,
• 50:43interpersonal relationships,
• 50:44clinical relationships,
• 50:46in how we structure material environments.
• 50:50So like all of this stuff.
• 50:52Or put more simply.
• 50:54What actually unifies the concept
• 50:57of disability is its function to
• 50:59provide those sorts of regions reasons
• 51:01that will tend towards flourishing.
• 51:04Regardless of the particular abilities,
• 51:07disabilities, however you want to define it,
• 51:10of people of various sorts of of body minds.
• 51:17This I think, I think allows us to say yes,
• 51:22the concept of disability does
• 51:24pick out something in the world,
• 51:26namely it picks out a tool we use.
• 51:29In order to try and negotiate
• 51:32towards making the world better
• 51:35across people's various body,
• 51:37minds and ways of being in the world.
• 51:41And you can say that at the same time.
• 51:44That you include someone
• 51:46with infantile Tay Sachs,
• 51:48someone with Down syndrome.
• 51:49This definition even allows you to
• 51:51say that someone who is disabled
• 51:53who hates being disabled and says,
• 51:55I really wish this didn't happen,
• 51:57you can still explain that they're
• 51:59saying I am disabled in the sense that
• 52:01I wish we could structure relations
• 52:03such that my body is not this way.
• 52:05We can explain that and someone who
• 52:08says I love the way I am disabled,
• 52:12I love being deaf, I love being blind,
• 52:15I love being whatever it is what I
• 52:17when I refer to myself as disabled,
• 52:20I am pointing out that I
• 52:22encounter accessibility issues.
• 52:23I encounter all sorts of problems
• 52:26in the world, and I wish.
• 52:28That these would be structured
• 52:31such that it would.
• 52:32Allow me and people like me to flourish more.
• 52:37So provocatively I think this we
• 52:38get to have our cake and eat it
• 52:40too with this sort of a a kind of
• 52:43pragmatic understanding of disability.
• 52:45And I also think if we go this way back
• 52:48to the future of disability bioethics.
• 52:51This will provide a much bigger tent.
• 52:54In terms of thinking about disability,
• 52:57another group that is regularly left out,
• 52:59which drives me up a wall,
• 53:01is aging populations who are
• 53:03experiencing all sorts of impairments
• 53:05that just come along as you get older.
• 53:07These are often not remotely talked
• 53:10about in many disability activist spaces.
• 53:12And there are people I personally
• 53:15know in my life who are older and who
• 53:18hesitate to think of themselves as disabled,
• 53:21not least of which because they feel
• 53:23like they are not part of various
• 53:26sorts of disability communities.
• 53:27There's also questions of ageism,
• 53:29and if we think about disability in
• 53:32terms of simply providing reasons to
• 53:34structure and or change relationships,
• 53:37I think it gives us a much a
• 53:40very clear path to include.
• 53:42More groups and yet still allow for
• 53:45the different ways and the different
• 53:48sort of needs for structuring that
• 53:50will be a play depending upon.
• 53:52Who precisely, we're talking about?
• 53:56And one more and then I will stop because
• 53:59I want to leave time for discussion.
• 54:05Again, in the spirit of future stuff.
• 54:08I just want to point out what I take
• 54:13to be very for various boy. For.
• 54:20Central lessons? For the future of
• 54:24disability bioethics that we learned
• 54:26during COVID-19 and that I'm not
• 54:28sure have been fully appreciated yet,
• 54:30and at least certain circles the first one.
• 54:34I think that COVID-19 demonstrated
• 54:38that anti discrimination approaches
• 54:40are simply insufficient to get us
• 54:43anywhere near something like equality,
• 54:45much less equity.
• 54:46And I think that we need a constitutional
• 54:49approach to disability rights.
• 54:52And interestingly, if you look at
• 54:54the history leading up to the ADA,
• 54:56there was a very conscious decision
• 54:57to not go a constitutional route
• 54:59because it was perceived to be
• 55:02impossible would never get through.
• 55:04And there is this attitude,
• 55:06especially among people who don't study
• 55:08this stuff, that, oh, we've got the ADA.
• 55:11It's fine now.
• 55:12The NDA was never the end goal we need.
• 55:19A constitutional approach?
• 55:222nd we must support and create
• 55:25an A real social safety net.
• 55:28And by that I mean universal access to
• 55:31basic goods, housing, obviously water,
• 55:34obviously nutritious food,
• 55:36obviously we have to get rid of food deserts.
• 55:41We have to go to some sort of,
• 55:43whether it's medical care for
• 55:44all or whatever,
• 55:45some sort of form of universal healthcare.
• 55:48The fact that one in five United
• 55:51States citizens do not have
• 55:53access to basic Healthcare is a
• 55:56stain on this country that is.
• 55:59Just unthinkably terrifying.
• 56:02All of that, I think,
• 56:03was demonstrated so palpably through
• 56:05how COVID-19 played out, who died,
• 56:08who did not, who got resources first,
• 56:10who got them last, all of this.
• 56:13Also, who ended up in the emergency room?
• 56:17We all know it was not necessarily
• 56:19those who had underlying conditions
• 56:21because they don't go to the gym.
• 56:23It was because those underlying
• 56:25conditions are a result of redlining,
• 56:28of segregation, of housing and justice of,
• 56:31you know, you name it.
• 56:35Third, again, these are what
• 56:37I take to be big lessons,
• 56:40big takeaways from COVID-19.
• 56:43We must more actively undo
• 56:46systems of inequality.
• 56:48We must move towards decarceration,
• 56:50decriminalization,
• 56:51deep policing, land back.
• 56:54Um, Deacon. I mean,
• 56:55I could go on and on with all the
• 56:58structural things that are in place
• 57:00now that tend towards inequality.
• 57:03They're not even just neutral,
• 57:04they're actively making
• 57:06things more inequitable.
• 57:11And fourth big point,
• 57:13I I have many friends who work in healthcare,
• 57:17including some who worked in
• 57:19work in emergency departments,
• 57:20and I just cannot believe the terrors
• 57:24that practitioners and healthcare workers
• 57:27have been put through during COVID.
• 57:30You know I just think it is such.
• 57:32It is so. It's so wrong.
• 57:35What? Our. Our.
• 57:37Medical practitioners have had
• 57:39to face during COVID and I think
• 57:43one of the biggest takeaways is
• 57:46that we cannot have healthcare.
• 57:48A healthcare system that is just.
• 57:51If the society in which the healthcare
• 57:54system is embedded is not just.
• 57:57And I think that we just gotta,
• 58:00we gotta work harder.
• 58:01We got,
• 58:02we got to work harder so that something
• 58:05like what happened never happens again.
• 58:07And you don't have the burnout
• 58:09and you don't have, you know,
• 58:10all of the, all of the.
• 58:11Terrors that healthcare workers were,
• 58:14were faced with that they did not have to be.
• 58:17If we had set things up differently,
• 58:18if we responded differently,
• 58:19all of this stuff.
• 58:24Ohh OK yeah.
• 58:25Three very quickly, 3 less slides.
• 58:29I'm a pessimist by nature,
• 58:30but when I'm having a moment of optimism,
• 58:32I I look at things like this,
• 58:35this sends invalid as this really
• 58:38brilliant disability justice
• 58:39based performance collective.
• 58:41I highly recommend that you pay
• 58:43attention to them and if they're
• 58:44ever performing, go see them.
• 58:46They have articulated what they call
• 58:4810 principles of disability justice.
• 58:50And I won't read through this whole thing,
• 58:53but. Like if you like principles and
• 58:56you like a vision of how to fix things,
• 58:58I think this is really,
• 58:59really powerful and a great model to look to.
• 59:02And with sins invalid,
• 59:03what's especially great about this
• 59:05is these are people who have,
• 59:06you know,
• 59:07they're doing research on the
• 59:08scholarly side and they're activists
• 59:09on the streets and their artists,
• 59:11you know, they're, it's all of it,
• 59:13kind of together.
• 59:15And then just say a shout out to.
• 59:19The capitalist hellscape in
• 59:20which we live and the idea that,
• 59:23hey,
• 59:23maybe if we had something closer
• 59:25to a donut system where you have
• 59:27a fundamental social support below
• 59:28which no one can fall and you also
• 59:30have things on top right, we cannot.
• 59:33If we want humanity to continue
• 59:36in anything like the shape it is,
• 59:39we cannot have people like Elon Musk.
• 59:40You can't have billionaires in
• 59:42the just society. You have a top.
• 59:44I think this is actually in many
• 59:47ways the donut quote UN quote.
• 59:49Permanent economic model is fundamentally
• 59:51a disability justice model,
• 59:53right?
• 59:54It's fundamentally intersectional,
• 59:55and it links everything from income,
• 59:59education, water,
• 60:00food,
• 01:00:00energy to creating a system that regardless
• 01:00:05of 1's particular abilities or disabilities,
• 01:00:08there are routes for flourishing.
• 01:00:11So I really like this.
• 01:00:12And if you haven't read about
• 01:00:15the doughnut model,
• 01:00:16it's such a silly word.
• 01:00:17I just feel like we've got to come
• 01:00:18up with a different phrase for this.
• 01:00:20But anyway,
• 01:00:21I strongly recommend you look into this.
• 01:00:23I think it's very,
• 01:00:24very promising.
• 01:00:25And the countries that have tried to pull
• 01:00:28this off have had significant successes.
• 01:00:31Of course, the problem is many of
• 01:00:32the problems we're facing are global.
• 01:00:34So one or two very rich Nordic countries
• 01:00:37doing this is not going to solve our.
• 01:00:40Global issues.
• 01:00:46I thought I said, Oh yes, OK,
• 01:00:47four more slides. I lied.
• 01:00:50So a few takeaways from what I
• 01:00:52said this time, not from COVID-19.
• 01:00:55I hope to have demonstrated
• 01:00:58that abilities are.
• 01:00:59Components of ones flourishing
• 01:01:01just as disabilities are,
• 01:01:03and then how and whether when's
• 01:01:05abilities are disabilities will
• 01:01:07tend towards flourishing is
• 01:01:08always a question of environment,
• 01:01:10Organism interaction, right?
• 01:01:11It's always going to buy it in
• 01:01:14large be a question of context,
• 01:01:16situation, you name it.
• 01:01:17And I also hope that I demonstrated,
• 01:01:20even if indirectly,
• 01:01:21the disability is as diverse as
• 01:01:24any other form of human experience
• 01:01:27and any other way of carving up.
• 01:01:30Human identity,
• 01:01:30whether it's along lines of sex,
• 01:01:32sexuality, gender, race,
• 01:01:34ethnicity, class, you name it,
• 01:01:37disability is just as diverse.
• 01:01:39And This is why we should be just as
• 01:01:43careful thinking about it as as any of
• 01:01:48those other ways of marking human difference.
• 01:01:51And last but not least,
• 01:01:52I want to give a a shout out
• 01:01:54and a thank you to my family.
• 01:01:56All of my scholarly work,
• 01:01:58all my teaching,
• 01:01:59all my everything really is a result
• 01:02:02of my experiences with my family,
• 01:02:05many, most of whom had disabilities.
• 01:02:08Not just my brother who is very
• 01:02:10visibly in a wheelchair there.
• 01:02:12And I'm grateful to them for teaching me,
• 01:02:16even though I didn't have
• 01:02:17the vocabulary at the time,
• 01:02:18but teaching me a lot of the.
• 01:02:22Insights I I shared with you
• 01:02:24from disability studies today.
• 01:02:26If you would like the way
• 01:02:28too many things I referenced,
• 01:02:30send me an e-mail and I will
• 01:02:32send you a list of references.
• 01:02:33I can send you even more references you
• 01:02:36will you will regret ever asking me.
• 01:02:39Thank you so much.
• 01:02:47Thank you so much Cheryl.
• 01:02:49I was hoping this would be thought provoking.
• 01:02:51That's a Oh my goodness.
• 01:02:52There's lots to think about, a lot to unpack.
• 01:02:54What I'm going to ask you folks to do
• 01:02:57please is Karen will go around with the
• 01:02:59mic for the folks in the room who may have
• 01:03:01questions also for the folks who are on zoom.
• 01:03:04If you go through the Q&A
• 01:03:06portion through there, I will,
• 01:03:07I'll be looking at your questions and
• 01:03:09ask them to Professor Reynolds as well.
• 01:03:13So we'll start with that.
• 01:03:14Let me move over there.
• 01:03:15Let me start with the with the
• 01:03:16first question.
• 01:03:17And then I'll move over there
• 01:03:18while you're answering that.
• 01:03:18We'll see if we can make that transition.
• 01:03:20I was really fascinated
• 01:03:22by your observation 2.
• 01:03:24Two things which they just you
• 01:03:25could comment on one or both.
• 01:03:27There's a lot to learn.
• 01:03:28That's the first time I've ever seen
• 01:03:30that donor model and I found that fact.
• 01:03:31I wish we could have spent
• 01:03:321/2 an hour on that.
• 01:03:33I mean that that there was a lot of things
• 01:03:36in there I wish we could spend 1/2 hour run.
• 01:03:38I should come and take your course,
• 01:03:40I think, but but one thing was
• 01:03:43your observation about pain.
• 01:03:44And that this may be a special category,
• 01:03:48so to speak, because there's it seems
• 01:03:50unlikely that there are many people who say,
• 01:03:53you know, someone says,
• 01:03:53you know, I'm in a wheelchair,
• 01:03:55but that's all right by me.
• 01:03:56I can look, someone says I'm in chronic pain.
• 01:03:58It seems on you, someone say,
• 01:03:59but that's all right by me.
• 01:04:01Now,
• 01:04:01in fact,
• 01:04:01there are some individuals who will say that
• 01:04:03may have to do with religion or other things.
• 01:04:06There may be some,
• 01:04:06but I agree with that.
• 01:04:07That's much less likely than
• 01:04:09with some other things that are
• 01:04:11typically described as disabilities.
• 01:04:13But I I was interested in that
• 01:04:15particularly when you talked about
• 01:04:16the tax comparison with the chat
• 01:04:18with Down syndrome because I was
• 01:04:20thinking about what makes those
• 01:04:22kids different and one could be the
• 01:04:24though the degree of disability,
• 01:04:26one could be the longevity and
• 01:04:27yet another could be the pain.
• 01:04:29And I think the the the one that we
• 01:04:31focus on a lot when we talk about
• 01:04:32this because you and I haven't spoken
• 01:04:34of as my my day gig is neonatology.
• 01:04:36And so the whole question of of
• 01:04:38infants with disability or predicted
• 01:04:39disabilities is huge and how we think
• 01:04:42and how we counsel parents etcetera.
• 01:04:43But I think that the notion of pain,
• 01:04:46that someone's in pain are going
• 01:04:47to be in pain long term,
• 01:04:49might have physical or psychological,
• 01:04:51is really central to what we do.
• 01:04:53And I and so I think when we,
• 01:04:54when we compared those two,
• 01:04:55I think to me what struck me is what's
• 01:04:57the real difference in those kids?
• 01:04:58If you tell me this,
• 01:04:59kids in pain and we can't treat
• 01:05:01it adequately,
• 01:05:02that's a big step. That was one.
• 01:05:04The other thing that I wanted to
• 01:05:05touch on just briefly was your notion
• 01:05:07of aging and disability and aging.
• 01:05:08And I think that's colossal.
• 01:05:10I mean, I don't know how much of
• 01:05:11your work is related to that,
• 01:05:12but in particular it strikes me.
• 01:05:14That there are disabilities that
• 01:05:16when we see them and I mean I think
• 01:05:18this was kind of the point we see
• 01:05:19them in a 40 year old we say that's
• 01:05:21a visibility and when we see them
• 01:05:23in a 90 year old we say well what do
• 01:05:25you expect and so that we don't see
• 01:05:28that as a disability and some of it
• 01:05:30I mean I can tell you you know from
• 01:05:32my own experience over the course
• 01:05:33of life from this is that is that
• 01:05:34the 40 year old who's got a hearing
• 01:05:36disability has a hearing disability.
• 01:05:38The 70 year old was a hearing disability.
• 01:05:40That's much more funny to people.
• 01:05:42Grandpa couldn't hear that.
• 01:05:43Grandpa didn't hear what you said.
• 01:05:45It it how that evolves as people
• 01:05:46get older and how the perceptions
• 01:05:48of that evolved.
• 01:05:49I thought that was fascinating,
• 01:05:50but I wonder if if you would talk a little
• 01:05:52bit more while I go to the computer,
• 01:05:54look at those things about either of those,
• 01:05:55either the aging issue or the OR
• 01:05:58the possible exception of pain
• 01:05:59in your whole theory.
• 01:06:03Thank you so much. Also please
• 01:06:05remind me to slow down if I go fast,
• 01:06:08I usually especially speed up during Q&A.
• 01:06:14Jack, you're hearing me say the same thing
• 01:06:15as I did earlier today, but but that's OK.
• 01:06:20So I'm not here to promote my book,
• 01:06:23but the question about pain.
• 01:06:26That you just asked me,
• 01:06:28I spent two full chapters trying to,
• 01:06:32well, in part answer the
• 01:06:34question that you just asked.
• 01:06:36The books called the Life Worth Living,
• 01:06:38Disability, Pain and Morality,
• 01:06:40and one of the arguments I make there,
• 01:06:43and I'm drawing on a really wide,
• 01:06:45for better or worse,
• 01:06:47a really wide set of research.
• 01:06:49Is that it's crucial and a medical space
• 01:06:52in a political space and in our personal
• 01:06:56lives to the singers between component pain.
• 01:06:59Constitutive pain and consuming pain.
• 01:07:03Component pain we have to have.
• 01:07:07People who have.
• 01:07:10Pain. Asym Bolia,
• 01:07:11who do not feel pain.
• 01:07:14They can sometimes recognize their in pain,
• 01:07:17but there is no feeling of it.
• 01:07:20Often will die in their late 20s
• 01:07:21or early 30s because there's no
• 01:07:23feedback system to tell them you're
• 01:07:25jumping too hard or whatever.
• 01:07:27You end up with very significant
• 01:07:29orthopedic issues, among other things.
• 01:07:31We need component pain.
• 01:07:33We need we need pains that will happen
• 01:07:35that tell us what's going on now when
• 01:07:38you move into pain being constitutive.
• 01:07:40As with someone who's a
• 01:07:41chronic pain sufferer,
• 01:07:42this can take this gets way more
• 01:07:46complicated some people who
• 01:07:47have been in chronic pain for,
• 01:07:49say, 20 or 30 years.
• 01:07:51And you talk with them about it.
• 01:07:54You're like, well,
• 01:07:54if you could just make this go away,
• 01:07:56wouldn't you want it to go away?
• 01:07:58Many will say yeah,
• 01:07:59but then others would be like,
• 01:08:00I don't even know who I would
• 01:08:02be now without the pain because
• 01:08:03it has become a part.
• 01:08:05It is their new normal.
• 01:08:08And that is.
• 01:08:12That is a very different,
• 01:08:14wildly different, I think,
• 01:08:15set of experiences than in consuming pain.
• 01:08:18And there I'm talking.
• 01:08:19You know when you are in the middle
• 01:08:22of a migraine and you cannot open your
• 01:08:24eyes because light hurts too much,
• 01:08:26you cannot move out of bed.
• 01:08:27The nausea is intense.
• 01:08:29I think this is I would also put torture
• 01:08:31actually in the consuming category.
• 01:08:33I have never heard in any context ever,
• 01:08:36in the history of anything.
• 01:08:38People who enjoy, seek out,
• 01:08:41or want to normalize consuming pain.
• 01:08:43This is, by the way,
• 01:08:44I think this can explain,
• 01:08:48this set of distinctions,
• 01:08:49can explain people who
• 01:08:51seek out pain on purpose,
• 01:08:52whether through religious rituals,
• 01:08:54self cutters, you name it.
• 01:08:55They are never wanting it to be consuming.
• 01:08:58They aren't even necessarily
• 01:08:59wanting to be constitutive.
• 01:09:00They're trying to bring it in as
• 01:09:02a component of their experience.
• 01:09:05And I think that that's very telling.
• 01:09:08In the case of something
• 01:09:10like infantile Tay Sachs,
• 01:09:11it's clearly constitutive,
• 01:09:12I think pain that's at play there
• 01:09:16moving to the consuming level perhaps
• 01:09:19depending upon the particular
• 01:09:20experiences of the the infant or child.
• 01:09:22And that's in a very different category
• 01:09:25than say you mentioned unitology.
• 01:09:27I didn't even bring up anencephaly, right?
• 01:09:30Infants born without the organ of the brain.
• 01:09:33This is yet another, I think,
• 01:09:35very, very different example.
• 01:09:37You clearly have a different set
• 01:09:40of discussions to have there over.
• 01:09:43Mortality,
• 01:09:43but also the experience of the
• 01:09:45child upon for however many hours
• 01:09:47they are they are alive is going
• 01:09:50to be different in certain ways.
• 01:09:52And I think all of this,
• 01:09:53all of this,
• 01:09:54just points to the fact that we
• 01:09:57should be as careful and nuanced
• 01:10:00about thinking about the relationship
• 01:10:03between pain and quality of life and
• 01:10:06certain disability categories as we can.
• 01:10:10And that the role that pain
• 01:10:12plays should be an,
• 01:10:13especially in difficult medical
• 01:10:16decision making context.
• 01:10:18I talked more about beginning of life,
• 01:10:21but end of life this gets of
• 01:10:23course far more complicated.
• 01:10:25We need to be explicit and it
• 01:10:27would need to be very explicit
• 01:10:29about these sorts of things.
• 01:10:30And unfortunately, it's often not,
• 01:10:32you know, these sorts of.
• 01:10:34Conceptual tools are not
• 01:10:35necessarily at people's fingertips.
• 01:10:40Yeah. In terms of the aging,
• 01:10:43one of the things that popped into
• 01:10:45my head is a line that I heard.
• 01:10:48At the Society for Disability Studies
• 01:10:51in 2013, there is a panel on aging.
• 01:10:54There was a gerontologist. There was,
• 01:10:58I can't remember everyone on the panel,
• 01:11:00but everyone was just noting how damn,
• 01:11:03if everyone at least had a
• 01:11:04basic sense of sign language,
• 01:11:06imagine how transformative that would
• 01:11:08be for the fact that as humans,
• 01:11:11you have late in life hearing
• 01:11:13loss like that is a fact.
• 01:11:16And if we were more capacious about
• 01:11:20multiple modes of ways of communicating,
• 01:11:23that is something that could be, I think,
• 01:11:26addressed in a much more capacious manner.
• 01:11:28Don't get me wrong, you know,
• 01:11:30basic forms of sign language are not the
• 01:11:32same as being fluent in ASL or something.
• 01:11:35I'm not making that sort of a claim.
• 01:11:38But it is it,
• 01:11:40it is telling to me that there are
• 01:11:42very simple ways we could think
• 01:11:45differently about the transition
• 01:11:47of something like hearing.
• 01:11:49And we we don't.
• 01:11:51I think every school,
• 01:11:52I think should have ASL as a
• 01:11:55option to take as a second or
• 01:11:57third language or whatever it is.
• 01:11:59And the fact that it's not,
• 01:12:00I think is a huge,
• 01:12:02huge mistake for lots of reasons.
• 01:12:07Thank you very
• 01:12:07much. Come on. Yeah.
• 01:12:15That sounds better. Now we working.
• 01:12:17So thank you so much. So we have a
• 01:12:20question right here if you could please.
• 01:12:28Thanks so much.
• 01:12:30I just really appreciate your,
• 01:12:32Umm, the whole talk,
• 01:12:34but certainly the way that you
• 01:12:36were talking about disability
• 01:12:37justice as like a organizing
• 01:12:40framework to shine a light on,
• 01:12:43you know, a deeply flawed
• 01:12:45system that's failing all of us.
• 01:12:48And I'm curious kind of in that vein.
• 01:12:51You know, given the medical model
• 01:12:53around disability and the deeply
• 01:12:57curative culture of medicine
• 01:12:59as it's practiced in the West,
• 01:13:03sort of where like where the role of,
• 01:13:07you know, cure kind of fits in
• 01:13:11thinking about a system that's
• 01:13:12also predicated on profit and the
• 01:13:15expandability of bodies and all that.
• 01:13:18You know, I mean,
• 01:13:18just the conversation you're having
• 01:13:20about pain earlier too, you know?
• 01:13:22Yeah. Yeah. That's a great question.
• 01:13:25Forgive me for giving so many references,
• 01:13:27but the single most insightful
• 01:13:29thing I have ever read on the
• 01:13:33question you just raised is Eli
• 01:13:36Claire's brilliant imperfection
• 01:13:41ELICLARE. You know,
• 01:13:43I think it came out in 2018,
• 01:13:45so I'll just reference that real
• 01:13:47quick, but to answer directly.
• 01:13:52You know, when I talk on the ground
• 01:13:55with physicians of various specialties,
• 01:13:58I increasingly find them being
• 01:14:00sensitive to and aware of critiques
• 01:14:03of a kind of default drive to cure,
• 01:14:07increasingly aware of and sensitive to
• 01:14:10a default drive towards normalization.
• 01:14:13I think there's been a lot of progress on
• 01:14:16thinking more critically about normalization,
• 01:14:18whether it's on patients who are intersex,
• 01:14:20whether you name it. Um, but.
• 01:14:23Insofar as the system,
• 01:14:26the real money making is still profit
• 01:14:29driven and insofar as whether we're
• 01:14:32talking pharmaceutical companies,
• 01:14:33whether we're talking companies that
• 01:14:35build the various medical devices in
• 01:14:38a hospital setting, whatever it is,
• 01:14:40insofar as the business model is one
• 01:14:44that is primarily serving the interests
• 01:14:48of returning profits to shareholders.
• 01:14:52Cure is, of course, going to be.
• 01:14:55The primary driver,
• 01:14:59and this is a plug for the fact I
• 01:15:01just and I don't think it's radical
• 01:15:03as a bioethicist to say this,
• 01:15:05it's certainly not radical as a
• 01:15:07public health. Person to say this.
• 01:15:10For profit systems and basic
• 01:15:12healthcare are are incompatible.
• 01:15:15I just I don't see a way around this.
• 01:15:18Not that you can't utilize for profit
• 01:15:20systems with I'm just saying that the
• 01:15:23default cannot be one where returning
• 01:15:26profit to shareholders is the primary aim.
• 01:15:31And so yeah, my biggest concerns about
• 01:15:34the kind of the curative model are
• 01:15:37actually in the finance world that
• 01:15:40underwrites most forms of medicine as
• 01:15:43it's practiced in the in the global W
• 01:15:45that's where I would place the the the
• 01:15:47emphasis and that's where I think the
• 01:15:49change has to come or that's where.
• 01:15:54That is the route that is the
• 01:15:56actual root of the problem.
• 01:15:58I don't think it's necessarily
• 01:15:59individual physicians or even
• 01:16:01physician groups or you name it.
• 01:16:04Thank you. I have a a question
• 01:16:06here from from the zoom audience.
• 01:16:08Many of the, excuse me,
• 01:16:09many of the texts you cite are
• 01:16:13either implicitly or explicitly.
• 01:16:15Think of themselves as applying primarily
• 01:16:18or uniquely to physical handicaps.
• 01:16:20To what degree do you take the social
• 01:16:22model of disability to apply to
• 01:16:25profound cognitive handicap disability?
• 01:16:28There seems to be persistent and widespread
• 01:16:31biases against the desirability of,
• 01:16:33say, Down syndrome,
• 01:16:35a Down syndrome life,
• 01:16:38but it is just.
• 01:16:39But it is not clear what kinds of social
• 01:16:43interventions would bring that population.
• 01:16:45Up to the cognitive function.
• 01:16:48Of neurotypical populations.
• 01:16:52Yeah, that's a great question.
• 01:16:54I'm going to mess up the line,
• 01:16:55but Eva Kittay, philosopher, Eva Kittay.
• 01:17:01Once said that the last something
• 01:17:04like the last frontier of justice
• 01:17:06is intellectually disabled people.
• 01:17:10In some ways, that group is
• 01:17:13the the most left out of all
• 01:17:16theories of justice historically,
• 01:17:18and she thinks that's true
• 01:17:20of everything from.
• 01:17:21You know Aristotle up through lock
• 01:17:25mill rolls, like you name it.
• 01:17:31Yeah, I should I respond to this.
• 01:17:37I'll respond to it this way.
• 01:17:38I think there is a model. A model.
• 01:17:44To better incorporate people with severe
• 01:17:48to profound cognitive disabilities,
• 01:17:51and that is one that.
• 01:17:54A shoes a deficit model and focuses
• 01:17:57instead on a communication model,
• 01:18:00and I will give you a
• 01:18:02direct reference to this.
• 01:18:04I know this because I finished copying
• 01:18:06the final version last night if you Google
• 01:18:10the Journal of Philosophy of Disability.
• 01:18:13And then you click online.
• 01:18:14First, there's an article by
• 01:18:17Ali Peabody Smith, a researcher,
• 01:18:20a postdoc right now at UCLA working in,
• 01:18:23I think it's a neuroethics lab,
• 01:18:25I can't remember.
• 01:18:27And she wrote this profoundly,
• 01:18:29I think powerful and insightful
• 01:18:33piece trying to say that like, look,
• 01:18:35one of the reasons historically
• 01:18:37we have done such a horrifying job
• 01:18:40of treating people with cognitive
• 01:18:43impairments and. Particular.
• 01:18:46The way that we treat others
• 01:18:48is because we cannot get over,
• 01:18:49and we seem to always double down
• 01:18:52on this question of what they lack,
• 01:18:53that they are not communicating
• 01:18:55with us in the same way.
• 01:18:56And she's like,
• 01:18:57if we turn that on its head and
• 01:18:59ask questions of well,
• 01:19:01how can we communicate that is
• 01:19:04the basis for an appropriate kind
• 01:19:08of moral future? My brother was.
• 01:19:11But profoundly to severely
• 01:19:14cognitively and physically disabled.
• 01:19:17He was nonverbal,
• 01:19:18with the exception of when he was younger.
• 01:19:20He could say I love you and I did that,
• 01:19:23and which which was delightful.
• 01:19:26But nearly all of our all of my
• 01:19:28communication with him and I was his.
• 01:19:30One of his premier caretakers
• 01:19:32for over 20 years was nonverbal.
• 01:19:34And I learned.
• 01:19:35I could tell you if he had
• 01:19:38gas in a millisecond.
• 01:19:39By looking at his face,
• 01:19:40I could tell you if he was very happy,
• 01:19:43not happy.
• 01:19:44I could tell you so much
• 01:19:46information completely nonverbally.
• 01:19:49Because the question for my
• 01:19:51family was never about, you know,
• 01:19:54how can we get Jason to do the
• 01:19:55same stuff I'm doing or whatever.
• 01:19:57The question was,
• 01:19:58how can we interact with him and meet
• 01:20:01his needs and find out his desires?
• 01:20:03And, you know, that was,
• 01:20:05I think,
• 01:20:06the path forward to making sure
• 01:20:08that he lived a happy life.
• 01:20:10But that is not our default when and
• 01:20:13it's certainly if you look at the
• 01:20:15history of institutionalization,
• 01:20:17if you can stomach.
• 01:20:19Looking at it, if you haven't,
• 01:20:22Umm, that is, that is the open.
• 01:20:24What I just described with my
• 01:20:26family is the opposite of what most
• 01:20:28societies have done historically.
• 01:20:30But I think that's the the
• 01:20:31direction we need to go.
• 01:20:33And it does bother me how many disability
• 01:20:36studies scholars historically have left
• 01:20:39people with cognitive impairments out.
• 01:20:41I mean,
• 01:20:42there's even people who don't.
• 01:20:43Who are in disability studies
• 01:20:45who don't engage, for example,
• 01:20:46with the work of Eva Kittay
• 01:20:48because they're like, ohh well,
• 01:20:49she's a mom talking about her son.
• 01:20:51This isn't really like disability studies.
• 01:20:55You know, it's not really about,
• 01:20:56you know, what I'm doing.
• 01:20:57And of course that makes me very angry.
• 01:21:00When I run into those people,
• 01:21:02I usually just stop talking to
• 01:21:03them and turn the other way.
• 01:21:04So yeah. OK, next question.
• 01:21:10Thanks for your fascinating
• 01:21:11and illuminating presentation.
• 01:21:13I note that you have a background
• 01:21:15in religious studies too.
• 01:21:16How do you find the relevance of
• 01:21:18religion to disability issues,
• 01:21:19including abelism and the definition
• 01:21:21of the concept of disability?
• 01:21:24Great question.
• 01:21:27I spend a chapter on that in the book.
• 01:21:29I'm really just,
• 01:21:30I'm just promoting the book now.
• 01:21:31I'm so sorry.
• 01:21:32So this is an extremely important
• 01:21:35question and I am grateful
• 01:21:37Georgetown is doing some amazing
• 01:21:39stuff around disability studies
• 01:21:41and one of my colleagues,
• 01:21:43Julio Watts Belzer.
• 01:21:49Watt S-B ELSER is a is working
• 01:21:52inside of the Jewish tradition and
• 01:21:54is thinking about ways both in the
• 01:21:57Tanakh and the Talmudic tradition,
• 01:22:00thinking about ways to re envision
• 01:22:03the meaning of disability.
• 01:22:06You know, if you just do a very simplistic
• 01:22:08reading of certain lines and say
• 01:22:10Deuteronomy or Leviticus looks pretty
• 01:22:12ablist and bad and she's trying to,
• 01:22:14you know, use resources from the tradition.
• 01:22:16To have a more expansive understanding,
• 01:22:18the same thing is happening in Christianity,
• 01:22:20whether Protestant, Catholic,
• 01:22:22there are similar moves in Islam.
• 01:22:26I don't know if this is just
• 01:22:28a failure of my education.
• 01:22:29I don't know enough to talk about say,
• 01:22:31Buddhism or Shinto or Shinto or Hinduism,
• 01:22:33but. My viewpoint is that.
• 01:22:37All the major religious traditions
• 01:22:39to which I have been exposed.
• 01:22:41There are resources within those
• 01:22:44traditions to have a more capacious,
• 01:22:47progressive, just,
• 01:22:49equitable understanding of disability.
• 01:22:51But it often does require some work
• 01:22:54because these are historical texts
• 01:22:56and the reality of, for example,
• 01:22:587th century BCE during Second
• 01:23:00Temple Judaism is your life is not
• 01:23:03necessarily going to go super great if
• 01:23:05you're what we today call disabled.
• 01:23:07Um, I mean, I use the example from Socrates,
• 01:23:11and they didn't even mention that there's
• 01:23:13historical debates over the prevalence of it,
• 01:23:15but presumably one of the
• 01:23:18practices the Greeks engaged in,
• 01:23:20this was true of multiple communities in.
• 01:23:24In. All over the world was exposure.
• 01:23:29If you were born and you had a
• 01:23:32visible disability of some sort,
• 01:23:33especially related to your legs,
• 01:23:35you're just left out in the
• 01:23:38wilderness to die.
• 01:23:39You're exposed to the elements.
• 01:23:41And that's how Editus Rex starts.
• 01:23:42And if anyone remembers that,
• 01:23:44that's literally how the story starts.
• 01:23:45He's left out in the wilderness
• 01:23:47of Shepherd finds him,
• 01:23:47and that's how the story kicks off.
• 01:23:52So it's complicated, but I do.
• 01:23:55I don't want to throw the religious
• 01:23:56baby out with the bathwater just
• 01:23:58because we can very clearly find ablist
• 01:24:00examples in all these traditions.
• 01:24:01I would rather say that there are ways
• 01:24:04to engage in these traditions and
• 01:24:06ways of interpretation and ways of
• 01:24:08communicating Community building that
• 01:24:10could be leveraged and and brought
• 01:24:12in line with disability justice.
• 01:24:15I think. I think it's possible.
• 01:24:17Thank you. Now I didn't,
• 01:24:18I didn't warn you about this
• 01:24:20ahead of time, but but I was.
• 01:24:22I will take the last minute just to offer
• 01:24:25you the opportunity if there's any.
• 01:24:28So we have an audience that is a collective.
• 01:24:31We've got many people, many, many
• 01:24:32people here involved in healthcare, not all.
• 01:24:35But if there is something you want to say,
• 01:24:39a point you want to drive home,
• 01:24:41a final point you want to make that
• 01:24:44isn't related to the questions.
• 01:24:46That you'd like to share with the group
• 01:24:49if you want to sum up or or give us an
• 01:24:52important take home message from this. Hmm.
• 01:24:56See, I told you that that that was really,
• 01:24:58I'm going to like, just ramble here for
• 01:25:0015 seconds while you think about that,
• 01:25:01because this is, if you're ever moderating,
• 01:25:03this is really a bad move.
• 01:25:04You got to tell the guy ahead of time
• 01:25:06that you're going to do that to him,
• 01:25:07because they just kind of throw
• 01:25:09this in at the very end.
• 01:25:10OK, now that's enough rambling.
• 01:25:11So any final thoughts,
• 01:25:13my friend?
• 01:25:13Yeah, yeah. Um, I would just say this.
• 01:25:19We're in a very unique,
• 01:25:21I'm stating something obvious.
• 01:25:22We're in a very unique historical
• 01:25:25moment and I think that the
• 01:25:27whatever sector we are working in,
• 01:25:29whether you're in healthcare,
• 01:25:30whether you're in construction, whether
• 01:25:32you're I don't care what you're doing.
• 01:25:35The more we engage in the political process,
• 01:25:38the better. And I don't care
• 01:25:40what side of things you're on.
• 01:25:41Like we need we.
• 01:25:42I mean, we just had one of
• 01:25:44the most important midterms.
• 01:25:45Regardless of what you think
• 01:25:47about what you want to happen,
• 01:25:48we just had one of the most important
• 01:25:50midterms in modern American history,
• 01:25:52and only half of the country
• 01:25:54voted like this is got to like,
• 01:25:58yeah, we need all hands on deck.
• 01:26:00If we want to fix things,
• 01:26:02we need all hands on deck.
• 01:26:04So please go run.
• 01:26:05For Congress or get your children
• 01:26:07to and especially if you're Gen Z,
• 01:26:09for the love of God,
• 01:26:10getting Congress in the Senate, please.
• 01:26:13So if you're going to have all hands on deck,
• 01:26:16you're going to want to be dressed
• 01:26:18appropriately for the battle for the work.
• 01:26:19And so you start out with one
• 01:26:21of these babies right here.
• 01:26:23Well earned. Thank you very much.
• 01:26:25You back this year because of the
• 01:26:27wonderful work you did last year
• 01:26:28in pressing the folks who run that
• 01:26:29professional responsibility course.
• 01:26:31And we'll have you back here again because
• 01:26:33this has been a marvelous presentation.
• 01:26:35Please join me in thanking.
• 01:26:36President Ronald Reagan.
• 01:26:41Very nicely done my friend.
• 01:26:44Thank you very much for joining us.
• 01:26:45We'll be back with a zoom only
• 01:26:47presentation in two weeks and you can
• 01:26:49check the website for the details,
• 01:26:50but they'll also be a mailing.
• 01:26:52Thank you so much folks for coming
• 01:26:53in or for joining us on zoom.