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GR 5-2

May 03, 2023
ID
9888

Transcript

  • 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.