GR 5-2

May 03, 2023

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00:00Everyone here and on zoom.
00:01For those of you who do not know me name,
00:04my name is Pam Koons.
00:06I'm the I'm a GI Oncologist,
00:08Director of the Center for GI
00:10Cancers and I also serve as
00:12the Vice Chief for Diversity,
00:14Equity and Inclusion.
00:15And in this capacity,
00:17we have a series of DEI talks
00:19for Yale Cancer Center grand
00:21rounds and it is my real honor to
00:25introduce my friend, a doctor,
00:27Peter Pulos who is a clinical.
00:29Associate professor of radiology,
00:31gastroenterology and hepatology at Stanford.
00:34He's also the founder and cochair
00:36of the Stanford Medicine Alliance
00:38for Disability Inclusion and Equity.
00:41He received his MD at the University
00:43of Texas Medical School at Houston and
00:46did an internal medicine residency at
00:48University of California, San Francisco.
00:51He stayed at UCSF.
00:53As a gastroenterology fellow,
00:54however, after a spinal cord injury,
00:57he decided to retrain in radiology and
01:00did his residency at Stanford University,
01:02where he has stayed on.
01:04He did fellowship and then
01:05stayed on as faculty.
01:07His clinical practice at Stanford
01:09is in CTMRI and ultrasound,
01:12primarily abdomen and pelvis.
01:13We overlapped while we were well while
01:16I was there In the realm of GI oncology.
01:18His interests include radiology
01:20of the acute abdomen,
01:21the potability imaging and
01:23colorectal cancer screening.
01:25So Smatty,
01:26which is the Alliance for Disability
01:28Inclusion and Equity at Stanford IN,
01:30is a group composed of people
01:32with disabilities and their
01:34allies at Stanford Medicine.
01:35He's also a member of the Radiology
01:38Department Diversity Committee,
01:39the School of Medicine Faculty
01:41Senate Subcommittee on Diversity,
01:42and the School of Medicine
01:45at Diversity Cabinet.
01:46It is.
01:46I have no doubt that this will be
01:49a really memorable presentation
01:50and I think we'll really hope,
01:53hopefully open all of our eyes to
01:55thinking about disability as diversity
01:57and defining diversity broadly in medicine.
02:00So,
02:00doctor pulos,
02:01we are thrilled to have you here today
02:03and we have a fancy plaque for you.
02:18Photo op, Photo op. Yes.
02:20All right. I turn it over to you.
02:22All right. Thank you.
02:23Been looking forward to giving
02:25this talk for months now.
02:27And it's such a pleasure to finally be here.
02:30And thanks to everybody for having me.
02:32So, yeah, that's this is the title of my
02:35talk Disability as diversity in medicine.
02:38I have a few disclosures.
02:40I run a disability rights advocacy
02:42organization and I have a disability and so.
02:46I must disclose that my worldview
02:48and my opinions about disability
02:50and about diversity in general,
02:52are heavily shaped by my experience.
02:58I'm going to show you my learning objectives,
03:01communicate the importance of disability
03:03inclusion and its value in medical education
03:06to foster a culture of disability awareness
03:09and acceptance in your institution.
03:12And understand the importance of allyship for
03:13those who have disabilities in the workplace.
03:16And I promise I won't be reading
03:17all of my slides like this.
03:19This is just getting through
03:21the the paperwork.
03:22So and here's the outline of my talk,
03:25my personal story,
03:26just a casual run through them.
03:28Some photos that I feel like are
03:32important to share to communicate with
03:34my experience has been like a little
03:36bit about Disability 101 going to talk
03:39about ableism and intersectionality.
03:41Have different systems of
03:43oppression are intertwined.
03:45Talk about disability,
03:47HealthEquity for our patients,
03:49and then the equity and treatment
03:52of disabled trainees and providers.
03:55And lastly a little bit about organizing
03:58and advocating if we have time.
04:01So this is me.
04:02In 2002 I was a medicine resident at UCSFI,
04:07was on a ski trip.
04:09About a year before this picture
04:11was taken and I I was sitting there
04:13in the lodge or in my room and
04:16trying to fasten up my ski pants,
04:18but they wouldn't button.
04:19And it was my year of internship
04:21had finally caught up with me,
04:24I think with all of the bagels and Donuts
04:26at 3:00 in the morning and you know,
04:29the clothes weren't fitting anymore.
04:31And and Doctor Phil came on and
04:33he said something revolutionary,
04:35he said he asked me if my life
04:38revolved around food.
04:39Or if I ever did other types of
04:41activities with friends such as hiking
04:43or biking or and I thought to myself,
04:46no,
04:46this is all I do is is eat and
04:49drink and work and so I decided
04:51to take up a hobby and that hobby
04:54was cycling and it was fantastic.
04:56I fell in love with it.
04:57It was a great time in the
05:01outdoors and I dropped my weight.
05:03I was feeling great and then.
05:08So that was like my third year
05:10of residency at UC and then I
05:11stayed on to be a GI fellow there.
05:13This is a photo of me and my mentor, Dr.
05:16John Sello from San Francisco General.
05:19And the date of this photo is January 4th,
05:232003 was a New Year's party.
05:25I remember the date because this is
05:27the last picture taken of me while
05:30I was still neurologically intact.
05:33I got. He's drinking a glass of.
05:36California Chardonnay, most likely.
05:38And I've got a a Diet Coke there.
05:40I was on call and so I got pulled
05:43away from the party for a veraseal
05:45bleeder and I I drove into the the
05:49UCSF main hospital there they went
05:52to the ICU and my attending and I
05:55did a banding on this on a guy who
05:59was bleeding and you know this is 6
06:02months into my fellowship and I was
06:04starting to get the hang of procedures.
06:06And I'd tried Vera Seal banding before,
06:08but I'd always needed to be bailed
06:09out at some point by the attending
06:11who would like, grab the scope,
06:12say, all right, you know,
06:14that's enough of you trying to do this.
06:16I'm going to take over now. And.
06:18But this time I did it all by myself
06:20and so I was really proud of that.
06:22It was quite a milestone.
06:24The next day I rounded on service.
06:27It was super light.
06:28I got out at like 10:00 AM and I
06:30went for what I thought was going
06:32to be a one hour bike ride. Just.
06:34Just to get in a quick workout,
06:37but ended up unfortunately being a
06:402 1/2 month stay in the hospital and
06:43a total alteration of my life path.
06:46And so this is me in the ICU
06:48at San Francisco General.
06:50I've worked in this ICU as a doctor
06:54taking care of patients and now I
06:56was the patient being taken care of.
06:59I've been totally paralyzed
07:01from the neck down.
07:02And didn't know at that moment
07:05what was going to, you know,
07:07what was going to happen with me.
07:10It was very
07:13well, you know, you can imagine.
07:16So after about a week in
07:18San Francisco General,
07:18I got transferred to a spinal cord injury
07:21rehab center and this is me there.
07:24I got a chin control around my neck
07:27on this power wheelchair and my hands
07:29are just dropped down to my side.
07:31But I still have a smile on my face
07:33because of the cookie bouquet that
07:35that I was looking forward to eating.
07:39I could wiggle my left ankle at that point,
07:41which was like, somewhat hopeful,
07:46didn't really want to get out
07:47of bed if I couldn't walk.
07:49I was at first opposed to this wheelchair,
07:52but they told me that.
07:54You know, we're going to hope for the best,
07:56but prepare for the worst.
07:58And they met me each step exactly
07:59where I was in terms of my injury,
08:02trying to maximize my independence.
08:05And as my cord swelling went down,
08:09my legs started coming back first.
08:11I have a central cord syndrome,
08:13so my upper extremities are
08:15actually much worse than my legs,
08:17and so I started crab walking
08:20around the unit like this.
08:25I had to learn how to use my arms again.
08:28Also, this is me with a a police system
08:31rigged up to my left hand and the
08:34motivation is hospital French toast. So
08:40wasn't so bad actually.
08:42Then eventually I graduated to these
08:45parallel bars with full leg braces
08:47and like things just kept coming back
08:50and I was just so fortunate that.
08:54The biology of my injury was such that
08:56eventually I sort of ended up like this,
08:59walking around with one crutch and
09:04this is probably six months after my
09:07injury that I was able to walk like this.
09:10So I was 2 1/2 months in the hospital
09:14between the hospital and sorry,
09:18after my discharge I continued
09:20to rehab and but it wasn't very.
09:23Long after I was discharged
09:24that I went back to work,
09:26I was really excited to get
09:28back to my fellowship.
09:29I was feeling very hopeful,
09:32somewhat victorious,
09:32that I regained this function and I was like
09:36hoping that I would get back to my baseline.
09:39I was also confused and angry,
09:41but one thing was very different
09:43and that was seeing patients.
09:44It was just completely different
09:46than it was before my injury.
09:47I found myself with like much
09:51more empathy and understanding.
09:53And I don't know,
09:56a new sense of vulnerability.
09:58My questions were different.
10:00I wasn't just asking them about, you know,
10:02how many stools they were having a day or,
10:06you know, their medication dose,
10:07but also about their daily
10:10life and their frustrations.
10:11And so that was great,
10:14but it was also frustrating because
10:15I couldn't do a good physical exam.
10:18I needed somebody to be with me to help me,
10:21like with my stethoscope and opening doors,
10:24it was just very inaccessible And
10:28and then maybe more importantly,
10:31it was also impossible to do procedures.
10:34And so I felt like I was going
10:36to be trapped in academics,
10:37maybe even just in the same place forever.
10:40And I wanted my independence and I
10:42wanted to practice without barriers.
10:44And so I decided to switch into radiology.
10:47And this is me as a first year radiology
10:49resident rocking the CRT monitors.
10:51They're learning how to read chest Xrays.
10:54And eventually I got this wheelchair
10:56van from the state of California.
10:58And so I was able to drive to
11:01work again in my motorized chair.
11:04And then in 2007, I got this Segway,
11:07and this is how I cruise around today.
11:11I wasn't able to bring it on this trip,
11:12unfortunately,
11:12but this is how I this is how I get around.
11:17And so, yeah,
11:18I started on the faculty on 2009.
11:21I did my fellowship and body imaging.
11:23So kind of full circle back
11:25to gastroenterology,
11:26but from the imaging side.
11:29And so at that point,
11:31I got heavily involved in education.
11:33I was an associate residency
11:35program director.
11:36I started doing quality and safety work
11:38on the performance improvement committee.
11:40And I would do scattered bits of
11:42disability advocacy or mentorship
11:44more sort of like one off things.
11:46People would come to me and ask for advice,
11:49etcetera.
11:49But when I stopped doing the APD thing,
11:54I decided that I wanted to get
11:56involved in diversity work.
11:57I mean,
11:59diversity initiatives were
12:00sprouting up all over campus.
12:01I'd always been interested in
12:04diversity for different reasons and.
12:07And radiology announced that they were
12:10forming A diversity committee and they
12:12came out with this cool infographic,
12:14which I was like really excited about.
12:15It has two people with visible disabilities.
12:18And. But then I looked at the members
12:21of the committee and I saw that there
12:23really wasn't anybody with a visible
12:26disability and I couldn't really be sure
12:28that disability was being represented.
12:31And the mantra for disability advocacy
12:33is nothing about us without us. And so.
12:36I felt a self sense of obligation and
12:39also just a desire to get involved and
12:42so I volunteered for that and this sort
12:45of becomes like a theme of of my career.
12:48Since then is recurrent volunteerism
12:51to make sure that disability issues
12:55are raised in in diversity settings.
12:59And so you know,
13:00but the more I learned about diversity
13:02at Stanford and other places,
13:05the more it looked like.
13:06This where there was a lot of representation
13:10of ethnic and racial diversity,
13:13religious and sexual and gender diversity and
13:16all of those things are extremely important.
13:19But I felt like, for example, we had a
13:22diversity cabinet started at Stanford.
13:25We started in 2013 and and 2010 and so
13:29it's been operating for around a decade.
13:33This is around.
13:342017, when I started doing this stuff,
13:39by the time I became a member of
13:42the diversity cabinet in 20/20,
13:43it had been 10 years without
13:46any disability representation.
13:47The hospital was starting
13:49up employee resource groups,
13:51and they had formed like eight or
13:53seven or eight out of nine of them.
13:56And the only one that hadn't been
13:58formed yet was the disability
14:00employee resource group.
14:02And so it was just kind of,
14:03and this is not.
14:05These are two examples,
14:07but I can give you many more examples
14:09of either disability being either
14:11an afterthought or last to the
14:14table and and so I would argue and
14:18I'll try to make the case later
14:20on that disability has to be part
14:22of DEI efforts and why it makes
14:25total sense that that's so but.
14:30So in 2018, I joined this faculty
14:32subcommittee committee on Diversity
14:34and I sort of sheepishly suggested
14:36that we work on disability issues,
14:41not really having any idea what
14:43that was going to look like.
14:45And I was really surprised by
14:47the enthusiasm and and sort of
14:53and yeah, the the like.
14:57The excitement around starting
14:59something related to disability,
15:01the people I talked to actually
15:03expressed a sense of relief that
15:05somebody was doing something because
15:06they had been wanting to do something
15:08for some time but didn't exactly know
15:10how that they were going to do it.
15:13They were kind of almost afraid to say
15:15the wrong thing or do the wrong thing
15:18or ask the wrong question and so.
15:20I started branching out and and trying to
15:24learn the A/B C's of disability at Stanford,
15:27and luckily there was a
15:29medical student group,
15:30Med Students with Disability and
15:32Chronic Illness there, MSDCI.
15:34They're a national organization now,
15:37but they were really instrumental
15:39in helping me form this group,
15:41which I named the Stanford and Medicine
15:44Abilities Coalition because it makes.
15:49It's pronounced smack and I really
15:52liked that about it.
15:54I didn't really understand at the time.
15:56That is saying abilities instead
15:58of disabilities was a bit of a faux
16:01pas with the disability community.
16:02So we later changed our name to the
16:06Alliance for Disability Inclusion
16:07and Equity to sort of lean into the
16:11word disability and show disability
16:14pride and solidarity.
16:16So it's definitely been a learning
16:18journey for me and continues to be 1.
16:22So you know, some of you in the audience
16:25might be wondering to yourself,
16:27you know the the Americans with
16:29Disabilities Act was passed in 1990.
16:31You know, is there really a problem
16:33in 2023 and coming from a California
16:37and of course the only answer is dude,
16:40there is definitely a problem in 2023.
16:43They range from just minor annoyances
16:47to major structural inequities,
16:49everything from just automatic
16:52door openers not working.
16:54I was giving a talk on Access
16:56one day and I got stuck in an
16:59inaccessible bathroom stall.
17:00And which was great.
17:01I was really happy that that happened
17:03because it made a great anecdote and
17:05story that I keep telling at all my talks
17:07and people seem to get kicked out of it,
17:09but at the same time was pretty
17:11nerve wracking because, you know,
17:12I was a little bit late to give him my talk,
17:16but the stalls weren't built
17:19with accessible handles.
17:20And then more serious things,
17:21like people who are disabled,
17:23asking for accommodations,
17:25and those accommodations being
17:27inconsistently given or delayed,
17:30untrained staff,
17:31and even harassment and hazing.
17:38So a little bit to to back
17:41up about disability 101.
17:43I mean how many people are we
17:44really talking about here?
17:46This is an infographic from the CDC
17:49with 26 percent, one in four of adults
17:52in the US having some sort of disability.
17:57This, the percentage is highest in the South.
18:00This is 61 million adults.
18:02This is not a small population.
18:05You know, we actually did
18:07a survey at Stanford.
18:08As part of one of the first things
18:11that we did and we and our responses,
18:14we had 26.7% of people at Stanford
18:18either having a condition that
18:20qualified as a disability under the
18:23law or identifying is disabled.
18:25The group that identified was only 8%.
18:28And so a lot of people we a lot
18:31of responses in the survey were
18:34like I didn't even know that.
18:37I had a disability and so you know
18:43there's people with disabilities
18:45may not understand that they have a
18:47disability and and this gets into so
18:50this causes some problems when when
18:52people are discussing accommodations
18:54because you know you may go to your
18:57your boss and say you know I'm
19:02having problems with
19:03with fatigue I need some.
19:06Some breaks from night shifts and
19:08but not understanding that you know,
19:11what you're actually talking about is
19:14a disabling medical condition and that
19:16person that you're disclosing to might
19:18just think you're asking for a favor.
19:20And so the, you know things don't
19:23often get started on the right foot.
19:26So who is a person with a disability so
19:29under the law. Two things are required.
19:31One is an impairment.
19:33So this can be any physical or mental
19:35impairment. It's very broadly defined.
19:37It's it's documented by a doctor.
19:40The second thing is a limitation
19:42and and the law reads an impairment
19:45that substantially limits one
19:47or more major life activities.
19:49In other words, it can't be trivial.
19:51It has to be something that
19:53has a real effect on your life.
19:55This is also broadly defined.
19:59It's also important to note
20:01that under the ADA,
20:02disability is a legal definition,
20:05not a medical definition.
20:07There's over 50 definitions
20:10under federal law, you know,
20:12especially as it comes to like
20:14healthcare and disability insurance,
20:16and the ADA makes it unlawful
20:19to discriminate.
20:21It's important to know also
20:22that disability is diverse.
20:23So people,
20:23when they think of disability,
20:25they think of somebody who uses a
20:27wheelchair or as deaf or blind.
20:29But I mean there's a lot of things
20:31that qualify as as disabilities,
20:33including chronic health conditions.
20:35So Crohn's are all sort of colitis,
20:40ADHD or other learning disabilities,
20:43psychological disabilities or mental
20:46illness and then autism spectrum.
20:50And so some of these are visible,
20:53others are not.
20:54I think that the people with
20:57invisible disabilities face a
20:59lot more pushback and skepticism
21:01when asking for accommodations.
21:04Each group of these is a world
21:06unto its own and something there's
21:07a lot of issues that are shared,
21:09but others that are unique.
21:13And my organization is open to
21:15anybody with the disability,
21:17with any kind of disability or an ally.
21:21So what is ableism?
21:23And this is something that I didn't
21:26understand before starting Smatty.
21:28It's just it's more than overt
21:31discrimination against people and prejudice.
21:34It's also stereotypes,
21:37misconceptions, generalizations,
21:39the idea that people with without
21:42disabilities are superior to
21:44those with disabilities, that.
21:47The disability is somehow defining
21:50character flaw and and it's also a
21:54system of oppression that interacts
21:56with multiple other systems of oppression.
22:01So pop trivia, pop culture trivia,
22:05These are four movies here from the
22:0970s up till the present we have.
22:12Whose Life Is It anyway?
22:14The C inside $1,000,000
22:16Baby and Me before you.
22:17Does anybody know what
22:19these films have in common?
22:24Yeah, yeah.
22:30Yes, exactly. Yeah,
22:31they're they're all about people
22:33with disabilities who want to die.
22:35And so these movies are about assisted
22:38suicide. And this might as well be its
22:41own movie genre where disabled people
22:44are are portrayed as a burden or suffering.
22:48And so, you know, suicide seems like
22:50a reasonable and rational outcome.
22:53So in whose Life is it anyway?
22:55And the sea inside.
22:56These quadriplegics are fighting
22:58the medical establishment for
23:00the right to die $1,000,000 baby.
23:02It's a mercy killing.
23:04And me before you.
23:06This guy has money and love and
23:09still wants to die because life
23:12is intolerable and you know people
23:17have commented that you know when.
23:19When non disabled people talk
23:22about suicide it's discouraged
23:24and people are offered.
23:26Prevention and even though it's legal,
23:29it's not desirable.
23:30But when a disabled person talks about it,
23:33it's peppered in.
23:35There's peppered in words like
23:38autonomy and choice and people
23:41rushing to uphold these and you know,
23:44talk about prevention and mental
23:46health is sort of rare and what kind
23:49of message is this that we're giving
23:52disabled people and a non disabled?
23:55Audience, and I mean,
23:55don't get me wrong,
23:56it's not like these incidents
23:58have never occurred,
23:59but they're the minority,
24:01and they're definitely not
24:03counterbalanced by films about
24:05everyday disabled people just
24:07out there living their lives.
24:09And so the healthcare providers
24:11are less than immune to this.
24:13And so there's this classic 1994 study
24:16from the Annals of Emergency Medicine,
24:18and they compared,
24:20they asked 153 emergency care providers.
24:23Beliefs about quality of life after
24:26spinal cord injury and they compared
24:28those with quality of life Studies
24:31of a group of 128 high quadriplegics
24:34and only 18% of providers imagine
24:37being glad to be alive after
24:39a severe spinal cord injury,
24:41compared with 92% of true
24:44patients with spinal cord injury.
24:46And the amount imagine quality of
24:48life and the outcomes of such an
24:51injury were much more negative.
24:53And I mean, granted,
24:54I,
24:54I don't think I could have imagined being
24:57happy after a spinal cord injury either.
25:00I was surprised that after a
25:02brief period of adjustment,
25:04my happiness kind of went back to baseline,
25:07which was like, so,
25:09so to begin with,
25:10even before I had a spinal cord injury,
25:12frankly, as are a lot of doctors.
25:17And so you know,
25:18I think the part of the problem
25:20is that we see disabled people.
25:22In crisis,
25:23when they're in the hospital,
25:25when they're having like the
25:26worst day of their life,
25:27we don't see them thriving and
25:29and succeeding in the community.
25:31And so it's a it's a skewed perception.
25:37So how does this affect people who
25:39are non disabled? So if you're,
25:41I'd say a woman or a sexual
25:43orientation or gender identity.
25:47Group or member of any minoritized group,
25:50ableism is relevant and it intersects
25:53with other system of oppression.
25:55And it's not just these other three,
25:58it's it's many of them.
26:00And so intersectionality is is a term
26:04used to describe what happens when
26:08when these different isms intersect,
26:11and so, for example,
26:13a disabled women may experience.
26:15Oppression that's specific to
26:17their disability or to their
26:19gender or some combination of both.
26:22And so poverty and and under
26:26resourced issues can make people,
26:30you know less able to access supports,
26:33which further exacerbates disability
26:36and and ableism and other.
26:39Societal systems of oppression
26:41can also contribute to ableism.
26:43So if you're under resourced,
26:47you're also more likely to be
26:49disabled due to a lack of healthcare
26:52or education or other resources.
26:54And then when those people are disabled,
26:56they're even further pushed to the
26:59side and face additional barriers.
27:01So I would say it's important in
27:03order to address ableism, we must.
27:05Address these other systems of oppression.
27:08And in order to address these other systems,
27:11we also have to address ableism
27:16and this. There's this
27:17wonderful book by Kim Nielsen,
27:18A Disability History of the United States.
27:21And it was a it was an eye opener for me,
27:23and I'm going to break the rule again of
27:25reading something off the slide, but I
27:27can't say it any better than in the book.
27:29And when disability is considered to be
27:32synonymous with deficiency and dependency,
27:35it contrasts sharply with American
27:38ideals of independence and autonomy.
27:40This idea of pulling yourself up by
27:42your bootstraps and be, you know,
27:45the rugged mountain person.
27:47Disability. Therefore,
27:48I served as an effective weapon in powers
27:52in contest over power and ideology.
27:55So, for example,
27:56at varying times African Americans,
27:57immigrants, gays and lesbians,
27:59poor people and women have been defined
28:02categorically as defective citizens
28:04incapable of full civic participation.
28:07And so the idea that these ablest
28:10arguments are used to justify
28:12discrimination and oppression was was
28:15really like a major epiphany to me.
28:19And this sort of this manifest
28:22As for example,
28:23disabled people being categorized as
28:25unfit for certain jobs and and that's
28:28used to justify their exclusion in
28:31the workplace and ideas about what
28:33is normal or desirable in terms
28:35of physical or mental attributes
28:37were used to justify discrimination
28:40based on race or gender.
28:41Then of course there's the genetics
28:43movement which is very popular at
28:45the beginning of the 20th century.
28:47That was used to justify sterilization,
28:50segregation and euthanasia,
28:52but not just disabled people,
28:55but also people of color,
28:57ethnic minorities and others.
29:01And you could even take it one step further.
29:04Into like colonialism and imperial
29:06exploitation and the idea that certain
29:09people were in need of civilizing
29:11and that our culture is superior.
29:13And so I just think it's really
29:16critical to be aware of these
29:18intersections to actively work to,
29:20to challenge and dismantle them.
29:24So now we're going to talk about
29:26disability and healthcare and our patients,
29:28how well are we serving our
29:30patients with disabilities.
29:31So this graph is from the CDC.
29:34It's divided into social
29:36determinants of health,
29:38health and health risk,
29:40behaviors and and access.
29:41And people without disabilities
29:43are in the light blue and people
29:45with disabilities are in dark blue.
29:47And you can see that people with disabilities
29:50are more likely to be unemployed,
29:52to be victims of violent crime,
29:54to have premature cardiovascular disease,
29:57to be obese, to smoke cigarettes.
30:00To engage in no leisure time activity.
30:03They're less likely to be current with
30:06a mammogram and they're more likely to
30:08be needing medical care due to cost.
30:12But in other cancer sort of categories,
30:15they're also less likely to be
30:17screened for cervical cancer
30:18because they're falsely assumed
30:20to be asexual or nonsectional.
30:23A nonsexual by their by their providers.
30:30We did a study recently of the
30:32accessibility of US comprehensive
30:34cancer websites recently.
30:36This is unpublished submitted data.
30:39You know, cancer is one of the
30:41most frequently searched terms on
30:42the Internet and we probably all
30:44agree that patient facing sides
30:46should be accessible to those with
30:48disabilities and there are like
30:51readily available accessibility
30:53standards that you can use to check
30:56websites for accessibility and so.
30:58This is what smart IT people at
31:01Stanford did and we went through the
31:0650 NCICCM websites and we checked
31:08for conformance using these
31:10automatic accessibility testers
31:11that I really don't understand to
31:14be frank because our IT did this,
31:17we did code validation blah blah blah.
31:19So anyways. We went through these fifty
31:22websites and the results were pretty abysmal.
31:26Using this a checker only one
31:29website at the standard of 0 errors.
31:31Using this other tool,
31:333 sites completely failed checking
31:35and no websites met the standard.
31:37And then under the third accessibility
31:40checker there was a mean of
31:4368 errors per site.
31:47But nobody's been able to tell me so
31:49far as like how many errors do you need
31:52before a website becomes inaccessible.
31:55And I think that one would argue that
31:57the more the more errors you have,
31:59the worse it probably is.
32:01But you know these there are
32:04standards and we're not doing well.
32:06And I know you can't read this
32:08micro writing here that we rank
32:10them according to errors, so.
32:13The tiny bars at the top are good
32:15and the big bar at the bottom with
32:18like 400 and something errors is bad.
32:21I thought I would just give you
32:22guys props because you're pretty
32:24close to the top there at Yale
32:26University Cancer Center.
32:27So I Stanford is somewhere
32:30on the bottom somewhere.
32:32I didn't make an arrow for Stanford.
32:36So one of the problems and
32:38there are many problems that the
32:39ADA requires equitable care.
32:41But the things are required
32:44are just very basic.
32:46So parking spots, external doors,
32:49and restrooms have to be accessible,
32:51but the furnishings and equipment
32:52inside don't have to be.
32:54The weight scales, exam tables and chairs,
32:56none of that has to be accessible.
32:58Diagnostic imaging equipment also
33:00doesn't need to be accessible.
33:03And so it's it's just it's a problem.
33:05And let me tell you,
33:08even the stuff that is required is not often.
33:11Provided that the enforcement of
33:14the ADA is pretty weak and the only
33:17mechanism disabled people have is
33:20really to file lawsuits to get people
33:23to change other than asking nicely.
33:27But so you know,
33:28this is this is just one of many problems
33:31that keep people with disabilities
33:33from getting appropriate care.
33:37So what about ourselves?
33:39What about the medical?
33:40Medical students,
33:42trainees, Practitioners.
33:43So again, people with disabilities
33:46of the largest minority in America
33:49without disabilities is here in
33:51blue and with disabilities in red.
33:54So it's an 8020 split,
33:55let's say in medical school.
33:59According to the most recent data,
34:00about 8% of medical students
34:03disclose a disability.
34:05In residency programs it's pretty similar,
34:088% and then you get down to
34:11practicing physicians and it's only
34:133% disclose a disability according
34:15to the the latest study in 2021.
34:18So it's like highly underrepresented
34:21amongst amongst physicians and
34:24I think that part of this is
34:28underestimated because of the stigma.
34:31And reluctance to disclose
34:32that a lot of people have,
34:34even responding to anonymous surveys.
34:37But I think that we are underrepresented.
34:41So why is this?
34:42And I think that a big part of it is
34:46the culture of strength in medicine.
34:48We are expected to tolerate
34:49a lot of suffering,
34:50especially in Med school and
34:52residency and fellowship the likes
34:55that other professions do not.
34:57I mean we're expected to work long shifts,
34:59don't complain, don't ask for help,
35:01just be super fast and efficient.
35:04We're not given any time for self-care
35:06and then we brag about how busy we are.
35:08And I only slept 5 hours
35:10last night and I'm on.
35:11I'm doing the job of three people
35:15and my administrative roles
35:17etcetera and things are changing.
35:19I think that you know,
35:20people are starting to focus more
35:23on Wellness issues, but even then.
35:25I see,
35:25I hear a lot of talk about
35:28resilience and you know,
35:30developing personal strength when
35:31people are need to be talking about
35:34fixing a system that's broken.
35:36And so and this idea of a superhuman
35:40physician rushing in the room to save
35:43the day is a damaging stereotype.
35:45And I would say that the real
35:49superhero is a is a Doctor Who
35:51can connect with a patient who
35:53has empathy and has the creativity
35:56to solve the problems that our
35:58patients expect us to solve.
36:00And certainly one can do that
36:03without having a disability.
36:04But I'll make some additional
36:08arguments later.
36:08So this is one of my proteges.
36:10Her name is Suchi Rastogi.
36:12She's a third year medical
36:15student at Stanford.
36:16She I met her after a miserable experience
36:20she had during her first rotations.
36:23She had been diagnosed with an uncertain
36:26neurologic condition around as the AS.
36:29She was exiting the PhD phase of
36:32her training and going into the
36:34clinics and she the she didn't
36:37know who to turn to for help the.
36:41Advertising,
36:41or the assistance directing her to
36:44like a point of contact where she
36:47could ask for help with accommodations,
36:50was completely lacking.
36:51And so she bounced around for a long
36:53time before finally figuring out the
36:55right the right person to talk to
36:57you at the Office of Accessible Education.
37:00She,
37:02you know,
37:03got brought in her disability documentation.
37:05She got a letter.
37:07Stating what her accommodation should be
37:09and she was handed that letter to
37:11then go deliver to her attendings
37:14and you know, deliver she did.
37:18Sometimes delivering up to twice
37:21a day to different attendings who
37:23were rotating on her service,
37:25often in public places.
37:28Some of the supervisors openly
37:31challenged her accommodations.
37:33She was.
37:34Granted an accommodation to sit
37:36down on rounds occasionally but and
37:39to to asking the team to take the
37:42elevators but they would still take
37:43the stairs and when she went home
37:46early in keeping with her preapproved
37:48disability related working hours
37:50restrictions she was shamed for
37:53leaving and and made to feel bad
37:56about it and and so you know this
37:58is a was a complete failure of
38:01the system and kudos to her for.
38:04This act of political disclosure
38:07where she disclosed for the benefit
38:10of others and and actually goes
38:14through stepwise that ways the
38:16system can be improved to help
38:19students with disabilities.
38:20There are a lot of myths about learners
38:23with disabilities that admitting
38:25them lowers program standards and we
38:27sent unqualified graduates out into
38:29the world but they can't fulfill the
38:31requirements of the programs that.
38:34If we provide accommodations to
38:36them that compromises patient
38:38safety and that accommodations in
38:40the clinical saying don't prepare,
38:42prepare them for the real world.
38:46And so you know there have been
38:48studies and there are plenty of
38:50anecdotes out there that these are
38:52not true and that if people are
38:54given the support that they need
38:56that they are able to succeed.
38:59And so for example,
39:01taking this real world myth.
39:04People often say like,
39:06well,
39:06if we accommodate them in medical school,
39:08we're not doing them any favors because
39:10their residency will never accommodate this.
39:13But then they don't understand that
39:15there are residencies currently
39:17accommodating people with disabilities
39:18or with the same disability,
39:21and then the argument can
39:23get propagated in residency.
39:24Also that they'll never get a
39:26real job where there are plenty of
39:29people with similar disabilities
39:31practicing in other areas.
39:33And so,
39:36you know, there's a lot of of misconceptions.
39:38And so this is part of the reason why I give
39:42these talks to to present myself and other
39:47physicians as as an example that people
39:50with disabilities can succeed in medicine.
39:53And So what can we do about this?
39:57I think it's very important that.
40:00That we consider our approach
40:02to disability inclusion.
40:03So this is a pyramid and the
40:07first level is compliance.
40:08This is where most places are at.
40:10So this is law as the ceiling.
40:12So we will do the minimum necessary
40:15to accommodate, but no farther.
40:17We will follow the law to avoid lawsuits.
40:21Then the next level up is
40:23the spirit of the law.
40:25This has a more liberal interpretation
40:27and this is law as the floor.
40:30Some institutions are at this level where
40:33they take a more nuanced view and look
40:36at disabled people as an opportunity
40:39for practice or environmental improvement,
40:42and they speak of going above
40:45and beyond the law.
40:47And then the the pinnacle of the
40:49pyramid is a transformative approach.
40:52And I would argue that this approach
40:55doesn't really exist anywhere.
40:57You get glimpses of it.
41:00The transformative approach
41:01focuses more on social justice,
41:04looks at disability as
41:07just another difference,
41:09that it's normal that disabled
41:11people are assumed to be present and
41:14that their experiences are honored.
41:17This is an anti ableist system.
41:19It's flexible, it's focused on
41:22universal design to benefit everyone and.
41:25And the idea that we should reflect
41:28the same diversity as our patients,
41:31and this is what we're striving to achieve.
41:36My own experience with Stanford
41:39Radiology was overwhelmingly positive.
41:42And my program director here,
41:44Doctor Desser, she's very openminded.
41:47She understood her flexibility as a
41:49program director, what was required,
41:52what wasn't required.
41:53And we we focused on putting
41:56together win wins.
41:57So for example,
41:59pairing me up on call with people
42:03so that you know I would be an extra
42:06person to help relieve the load on
42:09my colleagues on IR for example,
42:12I would carry the consult phone.
42:15And so everybody else wanted to be
42:17doing procedures and seeing patients
42:18and I was more than happy to just
42:20like talk on the phone and like get
42:22the patient history and review the
42:24imaging and talk to the attendings
42:26and fellows about the treatment plan.
42:28And so I think these win wins are also
42:31important to cultivate if they can be,
42:33although it shouldn't be a requirement.
42:36On one thing that's really enabled
42:38me to succeed at Stanford is a
42:41volunteer program I have for Premed.
42:43And foreign medical graduates
42:45where they come in and they give
42:47me assistance throughout the day
42:49and in return they get mentorship,
42:53they get exposure to medicine and
42:56letters of recommendation, etcetera.
42:59And all the other benefits of having
43:01a mentor who's a physician and this
43:04doesn't cost the hospital anything
43:06and is an example of another winwin
43:08and I think I'd be remiss to.
43:11Not mentioned my residency classmates
43:13who are also like very
43:15giving and supportive,
43:17and I'd like to think that my influence
43:20on them was also extremely positive.
43:23And Lisa Meeks writes about this
43:26upward spiral of positive or informed
43:29information about people with disabilities.
43:32So the idea is that.
43:34If we have interactions with a student
43:37or a professional with a disability
43:40like an equal status relationship,
43:42then that leads to increased
43:44awareness on disability of the
43:46part of the non disabled person.
43:48That leads to reduced assumptions
43:51or stereotyping about disability
43:53and that has the ability to inform
43:56patient care and reduce the stigma
43:58and stereotypes that we bring
44:00to the to the exam room or.
44:04To our clinical encounters and
44:06hopefully reduces healthcare
44:08disparities caused by stereotype.
44:12So again this is the idea that equal
44:15status relationships improve attitudes
44:17towards disability and can have a profound
44:20effect throughout healthcare system.
44:23And then so going back to the benefit
44:25of including people like me in medicine
44:28socalled provider patients and we've
44:31lived on both sides of the stethoscope.
44:33We have a unique perspective on
44:35life and health that comes from
44:38being a patient and a physician.
44:40We're often working for access and
44:42for inclusive care for all patients,
44:45not just those with disabilities.
44:48We are role models and we
44:51represent what's possible.
44:52We have grit having had to work twice
44:55as hard to accomplish the same things.
44:59And I think that our presence
45:00has the ability to improve.
45:02Conditions for everyone.
45:08Just lastly, I'd offer you some
45:11strategies to combat ableism.
45:13So that disabled mantra,
45:16nothing about us without us.
45:19So if you're doing projects
45:22related to disability,
45:23bring patients and providers with
45:26disability in at the beginning, so.
45:30To to to enter projects at the
45:34at the beginning and so that they
45:36can help build programs with you.
45:38So many times I get asked to rubber
45:41stamp like educational courses
45:43or projects that people are doing
45:45like right before they're ready to
45:48launch and say you know it would
45:50have been nice for you to bring us
45:52in at the beginning so we would
45:54have some sort of influence over
45:56this and frankly could make it
45:58better and more representative.
46:02Self-assessment.
46:02So take a look around your your unit,
46:06your educational program and ask
46:08like how inclusive are your policies
46:11and procedures around disability.
46:14Look at your messaging.
46:18Are you including inclusive
46:19language and representation?
46:21Are you encouraging people with
46:23disabilities to apply to your programs
46:26if you have a disabled person?
46:28Who needs accommodations?
46:30Do they have an expert that
46:32they can turn to to get advice
46:34in a confidential fashion?
46:36Somebody with specialty with
46:39specialized experience who
46:41understands clinical accommodations?
46:44Are you promoting education and awareness
46:49around disabilities events like this?
46:52Talk today and then looking
46:53at your diversity programs.
46:56Do they include disability?
46:57And I would say that's extremely
47:00important and it's just crucial
47:02to form alliances between groups
47:05that are that are underrepresented
47:08or minoritized to work together
47:10to address these common issues of
47:13discrimination and to dismantle
47:15these systems of oppression, so.
47:19I realize this could be a bit overwhelming,
47:22especially for people who haven't
47:24heard talk about this before,
47:25but there are plenty of resources out there.
47:28You don't have to reinvent the wheel.
47:31There's a AA FC report,
47:33there's NIH tools that can give you
47:36basically a checklist of things to work on,
47:39from some very low hanging fruit
47:42to more complex systems issues.
47:44There are books, there are websites,
47:47and I challenge you like you know.
47:50Did you put something like this on
47:52Yale's website that you support and
47:54encourage applicants with a wide
47:55range of abilities and disabilities,
47:58including disabilities that are
48:00not immediately apparent?
48:01Could you invite disabled people
48:03to come to Yale and to be a part
48:07of your culture and to contribute?
48:09And with that, I'm going to close.
48:12I have a thank you slide here.
48:14Thanks for inviting me.
48:16It's been a pleasure talking to you.
48:18Thanks.
48:26Doctor police, thank you.
48:27That was powerful and truly inspiring
48:30and I think really helps us think
48:33about diversity in very broadly.
48:34And I learned a lot even though
48:37I've heard you give talks before,
48:39I learned a ton.
48:40So thank you so much.
48:41I'd love to open up for questions.
48:43We thank you for leaving.
48:44We have about 10 minutes.
48:46Any questions from the room and then
48:48I'll take a look at our our chat also.
48:54Questions
49:03maybe I'll ask,
49:04I'll ask a question to start.
49:05You raised this issue of
49:08disabilities that are not apparent.
49:11Can you kind of speak to that
49:13in terms of us thinking more
49:16broadly about being inclusive of
49:18really invisible disabilities?
49:21So, yeah, as I mentioned,
49:23people with invisible disabilities have a
49:26more difficult time accessing accommodations.
49:29And I think that there's that we have this
49:34inherent sort of skepticism in medicine
49:36that sometimes patients are either not
49:41telling us the truth or the full truth
49:45or maybe exaggerating their symptoms.
49:48There's a stereotype about people
49:50with disabilities trying to game the
49:53system and get something for nothing,
49:56that, you know,
49:57that accommodations are more like favors
50:00or special treatment rather than rights.
50:04And so, and I think it's just difficult
50:07for people and human nature to sometimes,
50:10you know, look at somebody who looks well.
50:13And he was complaining of something
50:15that that can't be seen and
50:17really asking like is this true,
50:22you know? And and a lot of people
50:25I talked to say the same thing.
50:27You know, the comments are but you look
50:29so good or you know, you know, are you.
50:34Is it really that bad people
50:39especially with like chronic pain.
50:42Have like a special,
50:45special sort of experience.
50:47Pain is something that I think is
50:50incredibly difficult for us to gauge.
50:53I mean impossible to gauge how much
50:55suffering somebody is undergoing.
50:57And so I think that
51:00sometimes we underestimate,
51:02underestimate what that feels like.
51:04Or maybe we don't understand
51:05that we've never had.
51:07Like excruciating pain before
51:08or we haven't dealt with a
51:10situation that felt the same.
51:12And so I think that part of it is
51:15just is human nature and part of it
51:18is also like a lot a lack of education
51:21or understanding on the topic and
51:24and so I don't I don't really know
51:29how to change the default from
51:33like skepticism to acceptance but.
51:36I think we have a long way
51:38to go in this regard.
51:41Culture change is is slow I think
51:44for a lot of a lot of different
51:47things and and you know we've
51:50we've moved the needle quite a
51:53bit in society about implicit bias
51:57towards racial and ethnic groups
52:00that are underrepresented or
52:02even like sexual orientation and.
52:04Maybe not so much gender identity,
52:06considering, you know,
52:07the political wars that are going on
52:10right now around transgender rights.
52:13But,
52:15you know, research has shown that
52:17bias towards disability hasn't
52:19really budged in the same way that
52:22other groups have benefited from.
52:24And so that's what I'm
52:28working on on changing.
52:30Thank you. We do have a question in the chat.
52:33So amazing talk, actually two comments.
52:36There was another one of
52:38amazing talk, 2 questions.
52:39One, did accessibility play a role
52:42in ultimately choosing radiology
52:43as your specialty versus others?
52:45And 2:00, what if your university
52:47doesn't even have a compliance,
52:49what do you do?
52:52Yeah, So radiology, the accessibility
52:55of radiology was definitely attractive.
53:00You know, this, like prepare or hope
53:02for the best and prepare for the worst
53:05thing also applied to my situation.
53:08And like, you know,
53:09the fact that I might age faster than
53:13than other people that I could become.
53:17You know that, you know,
53:19if I'm 30 years old and can barely walk,
53:21that what's going to happen
53:22when I'm 60 years old?
53:24And what happens if my condition worsens?
53:26Well, I can do radiology
53:28from my bed if I have to.
53:30And so I have the ability to like
53:33make money and contribute even if my
53:36condition like worsened to some extent.
53:39And and also I wanted to do like
53:42the same amount of work as my
53:44colleagues think that experience is
53:46incredibly important for physicians
53:48like the number of reps you get,
53:50the number of patients you see and I.
53:52I didn't want to really compromise on that.
53:55I mean, I do have some accommodations
53:57around my work hours,
53:59but for the most part,
54:00I do the same amount of work
54:03as my colleagues.
54:04And so the second question was,
54:06what if you're not even at the
54:09compliance level?
54:10And that's tough,
54:11you know,
54:16Yeah, I would say that we are not.
54:21In in in all places at the
54:25compliance level either at Stanford.
54:28The problem is in a big system like
54:31this where you have a university
54:33where you have a health system
54:36where you have like multiple silos,
54:39the disability competency or
54:42expertise can vary widely and
54:46one person may receive excellent.
54:49Treatment or around their accommodations.
54:52And a person in, you know,
54:55the cubicle down the hall may have
54:58a totally different experience
55:00with a different supervisor.
55:03Our students at Stanford are relatively
55:05well supported and they have like
55:08specialized people in the accessible
55:10education office who deal with their cases.
55:13But like the residents don't,
55:16post dogs don't and so.
55:18They often get left behind.
55:22And so right now we're trying to get all
55:26of these people talking to each other.
55:28You know,
55:28the Children's Hospital,
55:29talking to the adult hospital,
55:31talking to the School of Medicine,
55:33talking to the university and
55:35like trying to develop some
55:37common policies and procedures,
55:39trying to push education out to the masses
55:42to because you're not always going to be.
55:45Disclosing to to somebody who's like
55:50at a high level and who may have like
55:52a better understanding or appreciation.
55:55You may be just like disclosing show
55:57if you're a nurse like the charge
56:00nurse and the she may not have any
56:02inkling about that you're even
56:04disclosing a disability or what the
56:07resources are that are available
56:09or what her obligations are or his
56:12obligations are under the law.
56:14And so I think a top down approach can
56:18also be really helpful in this regard.
56:21So you need the education at at all levels,
56:25but we're trying to get a high level
56:28leader like at the vice Provost level
56:31around there to really somebody who
56:33can be in a position to affect change
56:36throughout the entire enterprise
56:38and bring things.
56:40Into a into an alignment because
56:43and right now we don't have that.
56:46Thank you. Any other questions
56:47from the audience before we close?
56:52Yes, Kevin, thank you. I'm just wondering
56:56if you could give an example of in the
56:59web data that we helped it pretty well.
57:02I would imagine some other areas,
57:03we probably have a lot of areas to
57:06improve on a lot of opportunity.
57:08Are there particular examples of other,
57:11you know, around other institutions
57:12that you work with or you visited
57:14and so forth where you do the day
57:17Like there's some real examples
57:18of something to action to avoid
57:20real states that organizations
57:23sort of stepped into as a sort
57:25of trying to go down this path
57:28that you would suggest to us,
57:29you know here at like one or two or
57:31three things you really want to not do
57:34as you sort of approach.
57:37For the Zoom audience, yeah,
57:40like what are the landmines to avoid
57:43essentially around disability inclusion?
57:48You know, I guess I would just say that
57:54the landmines end up happening
57:57when you're not including disabled
57:59people in the conversation.
58:01And but I don't think it's so
58:04much around landmines or talking
58:06about landmines or messing up.
58:08It's more just the omission of any
58:12sort of information that I see as
58:15the real problem that there's no
58:18welcoming language on a website.
58:21I mean, we've done a study of disability
58:25inclusion amongst diversity statements
58:27at radiology residency programs, for example.
58:30It was like 14% of residents of
58:34the of residencies,
58:36radiology residencies,
58:37mentioned disability as part
58:40of their diversity statement.
58:43And then you go and and people
58:45have looked at like,
58:46is the information on a website easy to find?
58:49Is there a point person that
58:51people can go to?
58:52Is there a clear process for
58:55requesting accommodations and it's
58:57really just frequently missing.
59:00And so I I think that this these are
59:02more sins of omission rather than Commission.
59:06I haven't seen too many examples of
59:10just like egregiously discriminatory.
59:15Well,
59:15I would say actually that these
59:18legalistic sorts of things that that
59:20that people put into like technical
59:23standards and and the way that.
59:27Accommodations are described in
59:30materials can be very discouraging.
59:34You know,
59:34like people with a bona fide
59:36disability may be entitled to
59:39reasonable accommodations that
59:40don't interfere with the essential
59:43functions of their job according to
59:46applicable federal and state laws.
59:49Like this sorts of things could
59:51be like very intimidating and
59:52discouraging for somebody.
59:54So and there are examples like in
59:56those resources and I can share
59:58those with everybody of like the
01:00:00things that you can say and do very
01:00:03low hanging fruit to make your
01:00:07institution more more inviting you
01:00:09know in a very easy in a quick
01:00:12short order of course the.
01:00:16You can't be just about the messaging.
01:00:18You also have to change some of
01:00:20the processes behind the scene.
01:00:21But language is important.
01:00:24Great. Thank you. I think we are at time.
01:00:26So thank you again, Dr. Pulis.
01:00:27This was just an incredible talk today.
01:00:34Thanks so much.