Chapters Transcript Video Healthcare Inequities Impacting People with Disabilities Stephanie Van, M.D., presents at the Johns Hopkins Department of PM&R’s Grand Rounds on September 28, 2022. OK, so this is the disability pride flag, the new one. Um And this talk is gonna be about health care in equities, impacting people with disabilities. And this is a very kind of relatively new concept for me. I kind of joined the disability advocacy advocacy movement at the start of the pandemic. Um And so maybe I'll kind of give you two bits of that journey along the way. But um from a lot of D E I efforts, diversity, equity and inclusion, we talk about race, we talk about sexuality, we talk about gender and unfortunately, disability kind of gets left out of the conversation oftentimes and it's just a cultural thing. Um So a new word that I learned recently is called Ableism and it's not like racism, it's not like sexism, it's um discrimination based off of a parent or perceived disability or ability. Um And it's a social construct that has been present for, you know, since modern medicine arose. So hopefully I can shed some light on that and uh we can talk about how we can actively combat this. So I have no disclosures, but I'm Doctor Stephanie Van as I was So graciously introduced as I'm a Vietnamese female with long black hair wearing a gray blazer and some scrubs with a blurred background. That's an audio description for people who have low vision or who are blind and my pronouns are she and her. So the learning objectives today are to recognize opportunities to confront ableism throughout health care. Um By the end, I'm hoping you'll be able to describe ma major health inequities affecting the disabled patient population and describe how these inequities manifest and intersect with other social determinants of health. Um And by the end, hopefully you'll also have some strategies to replace biased language in health care with more inclusive and equitable terminology. Ok? So first before we really dive into the talk, I just want you to picture in your mind as someone in your life who has a disability could be a patient you recently saw or like a friend or family member, someone with a disability, hold them in your mind throughout the talk. Um That'll help you just kind of personalize this information. It's not about data, it's not about statistics. This is about the people that we interact with every day. We take care of them, we work with them, we work for them. So hold this person in your mind. I'm gonna be thinking about my grandmother um who is very sweet and very deaf. She is hearing aids. Um And she's turning 90 in December. So that's her. Ok. So what's the big problem here? Like, why is this stuff even important? Why do we care about ableism and D E I patients do not feel cared for when they seek health care? It's kind of just a harsh reality that isn't super comfortable to talk about. Patients are suffering. They're dealing with health problems and they're experiencing a lot of trauma from life events, illness and unfortunately, interactions with health care, there's something called medical trauma or medical gas lighting, which is a new term that I recently kind of learned about over the last couple of years. And um it basically results in patients who have atypical presentations, they get dismissed and ignored and their symptoms get minimalized, um which is really unfortunate but it happens all the time. So in this context PM and R Physical medicine rehab, our multidisciplinary approach to medicine can be inclusive and supportive if we keep each other accountable to unlearn some outdated medical practices. I think we can really make a difference in our specialty and teach other specialties too. So here's a meme because uh I learned a lot from the internet and from memes. So what people think having an illness is like is very straightforward right? Here is a straightforward pie chart. You go to an appointment, you get diagnosed, you get treatment and support and you heal and get better, right? But what it's actually like is a pie chart that has many overlapping pieces and things aren't as in order. So you're waiting months for appointments. Um, you're going to multiple different specialists, you're left untreated. Um, treatments are ineffective or have side effects and your symptoms are fluctuating, you're dealing with gas lighting. So this is much more close to the reality of what a lot of our patients go through and that sucks. You know, the system is not designed perfectly. Um, so here's another meme, sorry, there's a lot of text on here, but it's basically a vicious cycle of medical gas lighting. So, um, you know, it starts with a doctor or health care provider kind of dismissing symptoms, um attributing them to just psychological factors or something else. And then um symptoms get ignored, this gets reinforced by maybe other specialists or, you know, patients themselves, you know, they'll start to believe, oh, maybe it is just in my head and then this results in inadequate care and the cycle continues. So I just want to highlight that there was a recent survey done by Lisa Izon who's a disabled scholar at Harvard. Um and she surveyed a bunch of physicians, 714 physicians and her survey revealed that there's a severe lack of understanding amongst health care professionals about what it's like to care for people with disabilities. She coined the term diagnostic overshadowing. So this is the phenomenon where a clinician will interpret all of someone's symptoms through the lens of someone's disability when those symptoms might be new and unrelated. So they're getting suboptimal care as a result. Um, out of the physicians surveyed in this study, 35.8% reported knowing little or nothing about their legal responsibilities under the AD A or the Americans with Disabilities Act. And 71% answered incorrectly about who determines reasonable accommodations. Um, there's just a lot of gaps in physicians knowledge, but regardless of this, 68% felt felt they were at risk for lawsuits under the ad A but that still wasn't enough for them to feel like, oh, they should get educated more about uh these policies. Finally, I think the most representative statistic from the study is that only 18% of physicians surveyed strongly agreed that the health care system treats disabled patients unfairly. So only 18% are kind of insightful about this. That means the other 89% are thinking, oh yeah, disabled people go through the health care system just fine. Right. So we're talking about disability here. We're talking about inequities. What does disability even look like? Like, I feel like we all have maybe like a a stereotypical picture of like what a disabled person might look like. But hopefully you've already transcended and um are thinking about that person in your life that you know who has a disability. So I think the National Council on Disability, um their health equity framework that they released earlier this year sums it up nicely. Disability is a natural part of the human condition. It occurs across all age gender, racial, ethnic language and social groups. Um So let's get into some legal definitions. So the ad A was passed in 1990 signed by George H Bush. And uh it defined disability as a physical or mental impairment that substantially limits one or more major life activities. And if a disability is not obvious to an employer, they can ask for medical documentation from a health care provider. That's us to confirm the need for an accommodation. Ok. So that's pretty vague, pretty broad. Um Let's see. Oh, sorry, I think it's skipping around. I think this is the next slide. Ok. So fast forward to 2010, the American um the AC A the Affordable Care Act, this was the first time there was a standardized collection of health data that included disability status. So it's a little more specific about disability. So yes, to any of these conditions is considered disability. So deafness or serious difficulty, hearing, blindness or difficulty in seeing serious difficulty in concentrating, remembering or making decisions because of physical mental or emotional condition. Five years and up uh serious difficulty walking or climbing stairs, five years and up difficulty dressing or bathing, five years and up and difficulty doing errands alone, like going to a doctor's office or going shopping because of a physical mental or emotional condition. 15 years and up. So definitely more specifics. Um Basically I'm hoping to drive home the point that disability can literally look like and feel like anything. So, here's a nice slide with a bunch of different cartoon depictions of a diversity of people of different colors, hair lengths, hairstyles, clothing, choices, mobility devices, um uh companion animals, uh medical devices like nasal gastric tubes. Um So disability is very diverse. These are actually um excerpts from the cover of a book called um Oh my gosh, what's it called? I'll remember the title later, but it's by Emily Lada. Um and it's a really great introduction to the disability advocacy and disability rights movement. Um It's basically how to become an ally and and how to be more conscious and aware of this stuff. So disability is diversity. Hopefully, I've kind of driven that point home. Uh the flags you see on the corners here are the original disability pride flag. There's zigzagging colors across a black, a black background and the zigzag is supposed to represent how people with disabilities have to navigate and adapt to various barriers. Um So the disabled community is the most diverse minority group and anyone can join it at any time. And that kind of is very different from a lot of the other minority or marginalized groups we talk about in D E I, about one in four us adults identify as having a disability and this is actually probably an underestimation because there are probably people living with impairments or disabilities who, you know, don't check that box. About one billion people or 15% of the world's population experience some form of disability. That's another CDC statistic could be under an estimation and then disabilities can be apparent or invisible congenital or acquired. Um So there's a whole diversity of disability. Uh I'm just hammering that point home. So finally, disabilities can impact a person's identity, their medical care, their personal assistance needs their mental health, their family and social interactions and their overall lifestyle. So disability is a very relevant. It's not just this niche topic that, you know, we should care about every once in a while. This is an everyday thing that affects people's everyday lives. So let's check our ableism. Um I kind of defined ableism a little bit earlier on in the talk, but similar to racism or sexism. Um It's a form of oppression. So there's oppression, prejudice, stereotyping or discrimination against someone with a disability or disabled people on the basis of actual or presumed disability. And to take this a step further, this is assigning value to someone's ability level as if someone is superior or inferior, depending on and their abilities. Um you know, the the false belief that someone might have a better or worse quality of life depending on their level of disability. Um And this is a huge misconception and it's really ingrained in our health care system and our culture and our society. And hopefully, we can start to change this mindset. Um, this definition is by a scholar at Georgetown named Lydia X C Brown. Um, she or they are disabled themselves. Um, I think, I believe uh, autism and, uh, probably a couple of other, uh, things she identifies with, but I just thought this was a nice definition. Concise. Um And hopefully it's pretty clear how this can be a harmful, uh, prejudice. So I just want to talk about briefly the history of discrimination and marginalization and exclusion against people with disabilities. Um Pictured here in the bottom right corner is the Rosewood Center. Um It was basically an asylum back in the 15 hundreds, I guess. And I think the original name for it was like the institution for the infirm and the ibes or, you know, something horribly offensive. Um And it was basically finally closed down, I think in like the late 19 eighties. Um but that's right here in Maryland. And so I just wanted to give a representative example of like, you know, this happens everywhere including at home and it persists to this day. Like I'm I'm sure there's other institutions um that have not so great practices. Um But disabled people have faced lots of discrimination throughout modern medicine, institutionalization for sterilization and eugenics. Um slurs like idiot, dumb imbecile, retarded, lame psycho gimp, cripple spas. Like these are all unfortunately in the vernacular of modern culture and some artists have actually been called out recently for including words like Spaz in their songs namely Lizzo and Beyonce. And then there's also been backlash like, oh, there's, there's white artists who also have these types of terms in their songs like that should be, you know, put on blast. Um But in any case, all of these words are offensive and have roots in discrimination against people with um physical or psychological disabilities. There's also medical, gas lighting, gatekeeping and trauma and gatekeeping is kind of a, um it's what it sounds like. It's like people kind of limiting access to resources and, and things um because of prejudice and that happens a lot in health care. Um A lot of people with disabilities uh report experiencing that instead of being addressed themselves, only health care providers will only address the family member that they came with or they're, you know, care Navigator instead of themselves, they'll be infantilized, treated as if they're not as mature as they actually are. They'll be objectified. So, um I don't know if you've ever heard of inspiration porn, but that's when, um you know, a meme of an amputee who's swimming is like, you know, you see someone who's missing their leg, who's swimming and underneath it's like try harder or like you have no excuses and just kind of using the image of a disabled person to say, hey, you able bodied people be grateful. Um All of that is dehumanizing. Um And even though it's can be seen and like, oh, they were trying to be a positive, you know, inspiring thing. It's like you're taking away their humanity and you're using them for someone without a disability benefit. Um and pathologize medicine is very, very guilty of this. So seeing people just as their diagnoses instead of a whole person. So this happens all the time. I'm guilty of it. We're guilty of it. And the first step towards making it better is just calling it out and giving ourselves better words and uh ways to move forward. So let me move on to the next slide. Sorry for all the negativity. I there could be a whole other lecture on like the history of discrimination against disabled people. Ok. I'm supposed to give you a knowledge check. So does anyone remember what percentage of physicians agree that the health care system treats people with disabilities unfairly? Do a lot of physicians feel like the health care system treats people with disabilities unfairly? Oh, I see people in the chat. 18%. Oh, very nice gold star. Well done, right? So only 18% of physicians agree that the health care system treats disabled people unfairly, which means the other 82% of physicians lack understanding. So here's another meme, one of my favorite Instagram accounts, Sweeney's underscore United. Um It's a old tiny skeleton in a top hat knocking on a old timey door. And the meme says the doctor heading into my appointment without reading my chart. Ready to gas light the bleep out of me. Ok. So let's dive into more of the statistic parts of this talk. So inequities that affect disabled people. So, inequities, what does that mean? Health differences that are avoidable, unnecessary, unfair and unjust and not primarily caused by the underlying disability? Um So in general, I found some big trends that you can kind of keep track of while we talk about the numbers, overall, people with disabilities experience a higher cost of health care, they experience higher rates of preventable illness. So like diabetes, heart disease, obesity, they have decreased access to appropriate evaluation and diagnostics due to bias and lack of accessible facilities and equipment. And then of course, they just face decreased understanding by health care professionals and research due to a lack of education and a lack of data. So a lot of the times people with disabilities will actually be excluded from uh health care studies because they're not sort of, you know, the appropriate control or they're not what the researchers are looking for. So moving forward, let's kind of keep those in big themes in mind. So the cost of living with a disability, um according to the CDC, disabled adults are more likely to delay or forego medical care because of cost. Um and disabled people spend more than four times as much on medical care as non disabled people, but they're less likely to have private insurance because they might be more reliant on social services. The financial consequences of a disability, like loss of income and increased medical expenses causes declines in other social determinants of health like housing, transportation and social relationships. Um And according to the W H O, disabled people are 50% more likely to have a catastrophic health expenditure. Um So not only are they spending more on health care, they're more at risk of getting bankrupt because of health care needs. Um And then this intersects with a lot of other disparities. So for um, uninsured disabled Americans, like upwards of 36% can't access necessary care compared with only 9.5% of uninsured non disabled people. Um So there's, there's varying numbers here but basically access to things like medications. Um and uh other resources for health care are just much harder to get in terms of inequities. So aside from cost, um there's some studies kind of quoted here and I have a full reference list at the end, but people with disabilities have a lower life expectancy compared to they're more likely to be obese, have unmet medical dental and prescription needs. Um And a specific study looked at deaf or hard of hearing folks and these people were three times more likely to report only fair or poor health compared to those without hearing disabilities. Um And unfortunately, more recent studies, uh found that there were higher fatality rates due to COVID-19 um in populations of people living with intellectual developmental disabilities, who were living in group homes. So I want to take another pause here and um just define intersectionality, a term that was coined by Kimberly Crenshaw in 1989. Intersectionality refers to the complex cumulative way in which the effects of multiple forms of discrimination. So like racism, sexism, classism, these can become fine and overlap or intersect, especially in the experiences of marginalized individuals to produce sustained and complex inequities. So, you know, if someone is disabled, that's one thing and then if they're a person of color who's disabled, who comes from a lower socioeconomic, you know, area, you know, that's, that's a triple threat basically. Um And all of those identities are marginalized and intersecting in various ways. Um So we have to think about these not as isolated factors in someone's health and someone's wellness. We have to recognize that all of them can be working together. Um And are mutually constituted if you will next slide. Sometimes my slides. OK. So I just like paddle off a bunch of statistics. I think I even, yeah, I skipped over a couple of slides. Sorry. Um Yeah, so multiple marginalized identities. So here's some statistics that kind of address the intersectionality of things. So disabled women are more likely to receive poor maternity care and they're less likely to receive a PAP smear or a mammogram. Disabled women with breast cancer are less likely to have breast conserving strategy or radiotherapy. And the authors of these studies attributed this due to perceived de sexualization. Like if a disabled woman um uh presents, she may be less likely to be asked about her sexual history and may be assumed to not be sexually active. Even if she is um disabled people in rural areas or disabled people of color will face even more barriers to accessing health care. And unfortunately, there's an infographic from the CDC in the next slide um that shows how Black and indigenous Americans are more likely to be disabled than people in other racial and ethnic groups. So here it is, if you're American Indian or Alaskan native, three in 10 of those people have a disability and if you're black, one in four of black people have disability, whereas the statistics are slightly better for other groups including white Hispanic, Asian, a native Hawaiian Pacific Islander. I hope this isn't too much of a Doubter. I hope this is more informative than depressing. My slide is freezing again. OK. So now that I've paddled off even more statistics at you write down or just kind of recall in your mind. One statistic one general trend that describes a health inequity that affect, that affects the disabled population. And I'll just, you know, give you a beat, put that in your pocket, save it for later. And remember it when you know, you continue with the the work of the every day, I will say even recently um at my A S C here in Bethesda, I don't think it's an individual person's fault, but I have a patient who at baseline has cerebral palsy and walks with a walker, but unfortunately got C R P S in her right foot. And so now she is unable to weight bear. Um And her mobility is far below baseline. She requires a hore lift for transfers and because the A S C doesn't have one available, I can't do the procedure that I was hoping to give to her. Um And that's not because it's not indicated. It's not because she shouldn't get it. It's not because I can't do it. It's because the table isn't accessible like and we'll try to find a work around um and problem solve and be creative. But unfortunately, um the, you know, people with disabilities, they have to do that every day and navigate a system that's not built for them. Ok. The National Council on disability sums it up nicely. So sorry for all the texts. Um but people with disabilities have more medical needs, but they use the health care system for disease management instead of disease prevention and that's probably why they're more likely to have preventative illnesses. Um Medical equipment for care and diagnostics is largely inaccessible. So like someone going for an MRI it sounds pretty routine, but if you need help transferring onto a table, um or if you need sedation because you have involuntary movements because you had a spinal cord injury. Oh my gosh, that's another headache I have with another patient of mine. Um, so you can only get an MRI sedation up in Baltimore, which is super inconvenient and oh, it's a whole story. So basically people with access needs don't always get a full evaluation on an exam table. They don't get accurate weights on scales. They're not always offered thorough diagnostics, et cetera. Health care data is severely lacking when it comes to the disabled population across the lifespan. So medical research is very limited in its understanding of this, particularly underserved group and current providers be included are severely lacking in their knowledge, familiarity and ability to serve the disabled population. It should be standardized across all us health care, professional schools um and programs to require disability competency education like this lecture. So way to go, we're already ahead of the game. Um The other institutions that are kind of at the forefront of this Stanford University of Michigan and Harvard. All right, here's another meme by the chronic notebook. It shouldn't be so hard to explain to your doctor that the years you've lived with an illness mean, you know, things about it, they can't learn from a textbook. Um And this kind of speaks to how lived experience can be expertise. Obviously, you know, being a patient living with a chronic illness, that is a certain perspective and doctors bring in their own knowledge. And the goal is for people to collaborate and work together to find reasonable solutions. But too often people who have lived experience and feel knowledgeable, feel very dismissed by their doctors. Um And hopefully that dynamic can start to change. OK. So we're gonna come to the language portion of this talk and and hopefully this will be more tools for you to use in your everyday interactions with patients and colleagues to start to uh enable a culture shift within medicine. I will say that language around disability is an evolving issue similar with race and gender. We're having very important conversations right now and we're still trying to figure this stuff out. So the same time next year, if you would ever invite me back for a similar talk, this language could be super outdated or inappropriate. But it's a start. I will say that communication and documentation is one of the major ways us health care providers can consciously counter bias because that's how we communicate. We read each other's notes to help continue care or hand off things. And so if we're using language that's inclusive and appropriate and not biased, then that can kind of perpetuate and hopefully become a little infectious. If you're ever unsure, the best policy is to just ask about comfort, about preferred language identifiers. Always a good policy. OK. Next thing I think it's skipping her. I'm sorry. Ok. So I'm gonna get into some uncomfortable terms here. Um I made a slide of words that are unhelpful but that I see in health care and documentation all the time. So I feel these terms can perpetuate bias, negativity. And I just feel like there are better ways to commute, communicate this type of information. So seeing words like obese fat, heavy crazy addict, drug seeking drug abuser, poor insight, poor health literacy, rambling, long winded, homeless, special needs, differently abled mental retardation and wheelchair bound. These are all things that have been actively rejected by the disability community as a whole. And because if you think about it, how diverse the disability community is, it's hard to agree on lots of things. Um because there's many different perspectives, but there are definitely better, more helpful ways to convey information aside from these terms. Um So hopefully, if you see these, you can kind of transform them into something different and maybe you all already have maybe a a different set of words in your mind for at least some of these terms that um is a little less biased waiting for my slide. OK. So I encourage you all to use terminology that does not perpetuate bias. Um On the right here in red, I have some repetition of the terms that I referred to on the other slide. Normal is another word that I don't really like anymore nor normal is different for everyone, right? What does normal even mean? Um So I prefer using the word baseline because everyone has their own baseline and usually people's goals are to return to their baseline if possible. Right. So that's a much more helpful, um, goal oriented instead of special needs or differently abled. I don't think that's inherently bad, but it's kind of just glossing over what someone might specifically need. So if someone identifies as disabled, just say that they're disabled or whatever terminology they prefer and talk about their specific access needs. So if they require holi for transfers, if they require, um you know, uh I don't know, simplified language or if, if they have low vision, if they require audio descriptions, be specific about that because that's much more helpful than just saying, oh, they have special needs and then not helping other providers who are trying to accommodate the patient. Uh figure out what is required instead of wheelchair bound. The preferred term is wheelchair user. Um because many people use wheelchairs and it liberates them, it gives them mobility in the community. Um It's a much more positive way to frame that instead of obese. I like saying high B M I and I like just documenting the B M I because everyone knows what that means. And it's also goal oriented like, oh, if their B M I is, is above a certain quota, maybe the goal could be to lower it. Maybe they have decreased endurance or decreased exercise, endurance. That's much more helpful. To describe that. Um So it's something you can work on. Um uh I've heard patients referred to as crazy so many times, um especially in pain medicine. Um you know, people can be emotional dramatic and a lot of times that stems from a history of trauma, history of PTSD and difficulty processing, difficulty communicating. And so these patients need extra coping support. Um You know, and it's just much more humanizing to treat them like, oh, they're, they're suffering from something they've gone through something not dismissing them and saying, I don't want to deal with this, that is not helping anyone. Um I like saying people need frequent red redirection instead of them being a, I've heard a tangential historian which isn't bad, but I like frequent redirection because it tells you exactly what you need to do to navigate that barrier, especially in brain injury medicine. Um ok, let's see, mental disorder or illness. Someone might need cognitive support or simplified summaries. I like saying that someone's facing housing or financial insecurity instead of staying homeless. Although if someone identifies as homeless, there's nothing wrong with that. Um And then of course, substance use disorder instead of saying addict or drug seeking drug abuser. Although in pain medicine, you know, some people will present and say, yeah, I'm an addict or like I was an alcoholic and it's like, ok, you had a substance use disorder that means you have certain risk factors for things. Let's move forward with that knowledge. Um So everything should be goal oriented and help you with coming up with a plan that suits that patient's goals and not perpetuate bias. Hopefully that's come across. OK, if you're really into this language stuff and you want to learn more. Um There are comprehensive guides on inclusive language and health care. One is by the American Psychological Association's Equity Diversion and inclusion guide. I put the link down there and then the other one is by the A MA um it's a guide to language, narrative and concepts. So these are great, very thorough, um great references if you're interested in more of this. OK. One more knowledge check. Um Who knows what a preferred term to replace wheelchair bound would be. You can just think of it in your head, could add it if you want wheelchair user. All right, Doctor Mayer gets the prize well done. All right. Yeah. Yeah. And referring to things as mobility. Uh Kaylen put primary mobility via wheelchair. That's perfect, like primarily just a wheelchair or you know, you could say like walker for household distances, like as specific as you can get, helps everyone in the care team understand what this person's baseline is. Very nice our end. So let's think again to that person in your life who has a disability, do you know about their preferred identifiers? Like have you asked them, do they even identify as disabled? Some people who I would say have a disability, they don't want to be defined or identify as having a disability which is perfectly up to them. Um And have you gotten insights from them about what they would change about their experiences with health care? Because I feel like um they have the most valuable feedback for people in the system um about how we can do better? Ok, I'm doing pretty good on time. So what's the bottom line we work for and amongst people with disabilities? I always tell my patients that I work for them. They're the boss, we're working together. Um And I also would want you to consider that we have colleagues, we have students, we have supervisors who also have disabilities and this is a human condition. This is not just our patients. Um So try to open up your mind to that possibility as well. Um People with disabilities are everywhere. One day we all might be disabled. Um Just, you know, it's a matter of time essentially. So what we can do right now is help reduce health care trauma with an inclusive approach to clinical care. And this is helpful for everybody, our patients ourselves and the culture of our system, it's never wrong to ask someone about their preferred identifiers or access needs. And we don't always have all the answers. So instead of saying I can't help you or there's nothing I can do for you don't contribute to someone feeling dismissed let the person know that you don't know but you're willing to figure it out with them and problem solve. Um Because sometimes that's all it takes is someone to really be present and actively listen. So here's another meme, it's boram. One does not simply create memes about accessibility even though I've been showing you memes about accessibility, this whole talk. All right, if you are super interested in this and want more. Um I here's a couple of videos um featuring people with disabilities talking about receiving health care. One is from the Department of Health Human Services, people with disabilities, talking about health care. And then the second video is um by the Special Olympics and talking about kids with disabilities. Um And obviously, we work closely with K K I and that's a fantastic experience. I have very fond memories rotating through there as a resident. Um So we have an excellent uh experience here and I think we're very lucky. OK. Here's some resources. Um Demystifying Disability is the book that the cover that I show. I can't believe I forgot the title of it. I spent like a month promoting that. I even interviewed the author. Um Demystifying Disability is like a great short accessible read or listen on audible. Um If you're into that, uh we have a podcast out of Hopkins called Included the Disability Equity Podcast and that's hosted by Doctor Bonnie Swear. Um There's also a podcast sponsored by Stanford and Michigan. Um it's called Docs with Disabilities hosted by Doctor Lisa Meeks and Peter Poos. Um And then another group out of Stanford is the medical students with disability and chronic illness. So, um they started small and now they have chapters all over the country. Um because there are students, there are medical students with disabilities, more and more. I think we should have more students with disabilities um in going into health care because if anything, their, their experience will contribute to their quality of care as providers. Um And it's the medical system and the academic system that needs to realize how to accommodate uh these very valuable trainees. Ok. And finally done with the bulk of my lecture. If you want even more, I will put in a shameless plug for my youtube channel. It's called Viability Clinic. And I make videos about accessibility, about health care, about disability representation in the media. I break down TV, shows and movies. Um I try to have fun um in all of my free time that I have in addition to my work. So thank you so much for being an attentive audience. And uh hopefully you've gotten something out of this. I think the slides will be shared with you. And here's all the references um that I could cram into these couple of slides. But thank you again. I'm happy to take questions. Um Stephanie, great talk. Uh We, we are clapping here in uh on a club like this. There you go. Um But great representation and highlighting a very important dimension of uh diversity and inclusion and uh and very pertinent for us as a specialty as well. Um So I really appreciate this presentation. I was just going to make a comment more than a question, which is this issue that you just mentioned about language and evolution, uh which is very pertinent, you know what we thought maybe a few years ago that was the proper way to prefer uh may not be anymore and, and it's changing and their ideas. Why is that? Um And I think that is important that we put perspective that this is a, the evolution of language which we know exist. Um And we all embrace that and don't feel bad about it because we will make mistakes as things maybe are uh we call out and so on and, but because we acknowledge that we might make mistakes, we are open to, to be corrected and don't get offended by those corrections and then uh but, but learn from, from those corrections. And I think this is a for, for, yeah, what you present here and yeah, so what you present here and, and other domain, domains of, of diversity and so on. So I, I, I appreciate that you brought that up. Thank you. Yeah. And that's a great um example of like one thing that used to be like, oh, we thought this was the only right way to do it is person first language. So you know, the thinking was oh, referring to someone as a person first with a disability was less offensive in way better than saying disabled person, which is identity first language. But many people strongly identify with their disability and you know, they might get offended if you don't use identity first language. So always best policy is to ask what someone prefers because then you're, you're showing your openness to learning and accommodating and uh you learn something about your patient. Um I have a comment too. I just wanted to uh commend you uh Stephanie on sort of bringing it all together. Uh This is an evolving topic. It's also a new topic and um congratulations on your youtube channel. Um uh I think it's awesome. Thank you so much. Uh Yeah, there was a little pet project that stemmed out of the pandemic and I haven't been able to stop myself making videos. It's a very small humble channel. But you know, um it's there for anyone who's interested and wants to like, like and subscribe um for a Halloween special. I am breaking down clips from the movie. Get out. I don't know if anyone's seen that. Really awesome Jordan Peele psychological thriller. Um but uh my colleague, friend Thomas Reed is blind and he's black and so we're watching the movie with audio description because that's how he experiences the movie and we're kind of giving a kind of breakdown that's a little different from most of the other great dogs out there. So that's the kind of stuff I'm trying to do on my channel and make it accessible and fun. So, thank you. Hi Stephanie. Great presentation. Um Wanted to see if you wanted to elaborate a little bit more about health care professionals with disabilities and the barriers they face. Um Actually, the percentage of medical students with disabilities has gone down over the last 10 years. Not up in part because of the push towards entrust professional activities, which is a good idea, making sure that people are able to do certain procedures or certain things. But we actually had a quadriplegic medical student here at Hopkins uh about 10 years ago who wound up dropping out of medical school because he was required to perform a pelvic exam and couldn't um uh and uh they wouldn't bend on it. I'm, I'm so so glad you brought that up, Dr Mary. Thank you so much. I'm actually working on a couple of review articles, one addressing disability, medicine in medical school curriculums and the barriers faced by trainees who are even just trying to get into medical school and then finish medical school. I think Hopkins has been um you know, back and forth on it. We actually have a few medical students right now. Currently enrolled, uh who identifies having disabilities and student disability services has been great and they're just kind of case by case, you know, figuring out accommodations and stuff. But it does take creativity. I think one big barrier is the cultural expectation. Right. Like people on admissions boards don't expect applicants with disabilities and if they come up, oh, it's a novel thing or like, oh, maybe, maybe their essay was about it and it's great. But, oh, like they're a wheelchair user. How are we gonna accommodate them on rounds? That's not something I've envisioned. I can't imagine that maybe they're not a good candidate, right? So already there's that gatekeeping that happens where people don't even expect applicants to come to the table with a disability. Um And then two, just academia in general is very able. So, you know, you know, once someone does get the uh acceptance and arrives at school, they have to be working with student disability services, they have to approach each of their lecturers and clerkship directors and kind of go through a disclosure process of like, hey, this is my disability. These are my accommodations I need and it can be a really vulnerable, uncomfortable um experience for a student who, you know, they just wanna have a, a medical student experience just like any other med student. Um But they know that they're facing bias, they know that there's ableism throughout the system and that it just makes them much more um vulnerable to feeling alone, feeling isolated and not asking for the things that would help them. Many medical students have learning disabilities that have kind of been masked up until the point where they've reached a graduate level. Um, so, so I feel like that's quite common and under celebrated perhaps. Um, and then of course, there's a lack of mentors with disabilities who are current providers. I mean, there's some good ones out there for sure, but there should be more and I feel like the more we see disabled health care providers as people to look up to, the more that opens up um people's imaginations of like, oh what is possible? So there's actually a couple case studies of quadriplegic medical students through rotations and kind of directing care that requires um you know, physical requirements like an exam or an LP or something like that. Um But they're case studies, you know, the the sample size is small. Um But I think it's gonna take a lot of creativity and flexibility for the culture of medicine to imagine other ways besides traditional ways that medicine has trained health care professionals. So I hope I was able to answer your question a little bit. It's just gonna take every single person to realize we could do things differently, we could do things more creatively. It doesn't have to be the way we've done them for the last 500 years or whatever. Well, um I'm sure Doctor Van will be welcome to questions outside of this platform if they arise at a later time. Um I do appreciate um you bringing this topic and this important issue to everybody's attention. I think continued conversation and um thought about uh issues of health equity, particularly disability are what's necessary to start to make these changes that you're referring to. So we're really excited to continue this conversation moving forward in our department and in our institution and hopefully throughout um health care in general. So with that said, everybody, um you get a little bit of time back. Thank you for that. And um I hope everyone has a wonderful day and um we will see you next time. Thank you. Bye. Thank you. Bye. Thank you. Created by Related Presenters Stephanie Van, MD. Assistant Professor of Physical Medicine and Rehabilitation Meet Dr, Van View full profile
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