The Future of Disability Bioethics

November 21, 2022

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November 16, 2022

The Future of Disability Bioethics

Joel Michael Reynolds, PhD

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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&amp;A.
01:33The Q&amp;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&amp;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&amp;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&amp;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.