Thank you for joining us Saturday morning. I know it's a tough time. I really appreciate it. My name is Saloni Sharma. I'm just gonna do the introduction. I was lucky enough to work on this excellent presentation with some people from the D&I committee. So we'll get started. This is our team, Dr. Martinez from University of Massachusetts, Dr. Jones from Vanderbilt, and there's two Dr. Jones, and Dr. Jones from University of Missouri. I'm not gonna go through all their titles. They are extremely qualified to the fact that I couldn't even list them all, but I will just let you know where they're coming from so you know that we are trying to cover a whole bunch of areas and different specialties as well. Dr. Patel from Albert Einstein, Dr. Powell from University of Alabama. She has so many titles, I don't even have room to write where she works. That's how many titles she has, okay. And then myself from Thomas Jefferson. So this is, oh, yep, this is just a disclosures. I don't know why that came there, but this is our session overview. So this is a sort of a high-level overview, and we really believe that healing starts with your words, and it's really looking at the whole person and their whole experience, and it starts when they walk in the door of your office. So we're gonna talk about the history of disability rights, go over some definitions and terminology. We're gonna talk about ways to improve communication, and you really can't help people get better or educate them if you're not speaking the same language, and if they're not comfortable, they don't felt seen, and if they feel like they're being othered, and really not the same level. And then empower you and your staff with educational tools and resources. So this is a really unique session. I've taken a part in a lot of sessions, but this is really about tools that you can take home for you and your practice, which makes it extremely unique. And with that, I'm very pleased to introduce, oh, these are actual detailed learning objectives, which I will not read to you, because my colleagues can do a great job of going through them, but they're here for you. And we're gonna start with the introduction overview of the session. That's me. And we're gonna do a history of disability rights with Dr. Jones. Yes, I need to click. All right. I got it. All right. So I always say, when we talk about disability, disability rights, and what we're really going to talk about in this session, I think it's very important for us to know where we came from and where we are now. And definitely, there's a lot of room to go in the future. And how we can improve access and communication with our patients that we deal with on a day-to-day basis. So I wanted to go through a little bit of the history for you. So when we talk about disability rights, and we look back in, we know people have had disability for many, many years. But people have been so disenfranchised, so put into little silos where they didn't have access, right? Or we didn't have the technology to help them. So when we really go look back at where disability ideas came from, especially here in the United States, where my focus will be, we look at back in the 1800s. So when we look back in the 1800s, we say, well, what are the two communities that really wanted to push forward to having more education, more space in the world? And that was the deaf and blind community. So the deaf and blind community really pushed to say, hey, we need to be educated too. So whether that's formal educations in schools or in programs where they're teaching you how to get out into your community and do things. And in this, the blind community said, we need to be able to communicate. And so that's where we developed Braille so that we can have a consistent communication for the individuals in the blind community. So that's way back in the 1800s. But like I said, even moving into the early 1900s, our disabled population was really marginalized. And some of the big things that came out with this idea of eugenics, sterilization, people that have disabilities, they're different. We don't want different around. And so we have now made it that when these individuals are born that we are saying that they shouldn't procreate. Or communities where we're saying, make sure that these disabilities are not seen. And so we really look at that in the early 1900s. But other parts of the community, things like individuals with amputations and other problems, we're saying, well, we need to be able to get out here and get back into the community, get back into the workforce. And so in the 1920s, the Smith-Vest Act was really a vocational act, vocational rehab act, to be able to get people back into the job force after they've developed some form of disability. But like I said, in the 1900s to 1930s, sterilization was still out there. So when we move a little bit further and we talk about the 1930s to 40s, we talk about President FDR. So he came into office. And he really supported what we now call the March of Dimes. And if we know that he was an individual that had a disability, but really hit it, right? So if you look at all the pictures of him, anything like that, you're not going to see any drawings, painting, or anything that has him really in a chair, though that was really his primary mode of, well, a big mode of mobility for him. Other things that we talk about, well, we made a natural federation of the blind. So more communication across the states. And then the Social Security Act was established. But also during this time, we're talking about the World Wars. So Nazi Germany, getting rid of individuals who were different, not what they saw as the perfect picture. And so many individuals who had disabilities actually went to camps, or were under medical experimentation, and ultimately died during that regime. So now let's move it into the 1940s to 50. Now mental health is starting to be much more recognized as a disability. And so the National Mental Health Foundation is funded in 1946. And then the PVA is funded for those individuals who are coming back from military action, and they're having new disabilities. And these are young individuals, working age individuals, who may have a leg or other limb blown off, or may have some form of a brain injury that might need some type of training or re-education to do something different. And then in the 1950s, we finally said, OK, now we have these individuals with disabilities, but now we have barriers to access to buildings. So they can't get in. Everything's steps. No ramps, even though oftentimes you think about it, ramps are so simple, because everybody can go up a ramp. But not everybody can go up steps. But during that time, the American Standards for Barrier-Free Buildings are developed to allow people with mobility challenges to have access to buildings. In 1954, the big case, we talk about Brown versus Board of Education on the civil rights side when we talk a lot more about race. But it also allowed to say segregation abolished. So we don't have to have that separate but equal idea that not only depended on race, but also allowed people who had intellectual disabilities who had previously been segregated to separate classrooms, separate buildings. Now these children can actually go into the public school system and be educated in that system. And then we talk about the rehab thing. So Howard Russ, one of our father's rehab, actually got appointed to the National Security Resources Board Health Advisory Committee. So really giving out this idea of rehab and what we can do to help individuals get back into their community. So in the 1960s, one of the big things was this idea of independent living. So moving ourself away from this institutionalized type care for individuals for disability, but saying, how do we get these people to be able to stay in their homes, stay in their own communities? And so Ed Roberts, our guy on the top right, he was a big individual out here in the Bay Area who wanted to go to school at UC. But they wouldn't allow him because he required significant mobility and respiratory support devices to go to school. And so he actually sued the school because of this to allow him to have access to come in because they denied him just based on the disability, not based on his educational abilities. And so other big things to point out is the Civil Rights Act came in 1964. And this idea that you can't have discrimination on race, religion, and other aspects was included. But individuals with disabilities were not included in that act. So they were still being discriminated against or separated in the community. Medicaid was established, again, for people with disabilities and low income. And then in 1968, the Architectural Barrier Act was passed to really push for more access to the community, ramps, curb cuts, things like that, that allow individuals to be able to get in buildings. And so we think about the mothers are a big aspect of individuals. And this disability rights space is Judy Heumann, who recently passed in the last two or three years. She was a huge civil rights activist who was an educator. And she wanted to apply for a job for the New York Board of Education. But they denied her license because of her wheelchair, saying that she wouldn't have access to the schools. She wouldn't be able to, they felt that she wouldn't be able to take care of her students the way that any other educator could be. But that doesn't make sense, right? Because you're teaching. You're not necessarily running people down in the hall. So she sued in order to get her licensure. If we go into the 1970s, we can talk about the 1973 Rehabilitation Act that really was one of the big acts that said you cannot discriminate in the workforce based upon somebody's disability. So now we're getting a little bit more saying that we can get disabled people in the workforce. We can get them to do these jobs. We're addressing some developmental disabilities in the 1970s. And then the 1975, the Education for Handicapped Children's Act basically guarantees free public education for all children, especially those with disabilities. We also see more globally that the United Nations starts to take a stance on individuals in the right of the disabled person. So in the 1980s, again, more UN work comes through. The establishment of the National Disability Employment Awareness Month, which was last month, that was established in 1988. And then really the big idea that we talk about is the American with Disabilities Act. And this says that you cannot discriminate people in all areas of public life. So schooling, education, access to public jobs, building things, from that standpoint, the ADA was established. And further in the 1990s, as we start to get much more technology, we are able to say that, hey, in 1996, the Federal Telecommunications Act was established to really work to find ways that people that may have some disabilities with communication, using the phone, right? You see the TTY on the phone, hearing, things like that, were established to help those individuals, along with the Assistive Technologies Act. And then a big OMS versus LC&EW case was really about individuals trying to be in the home, making sure, basically it says that when we look at insurance and other things, we're basically trying to say, if people want to stay in their homes, we would allow them to stay in their homes and provide them the care in that setting, in that setting that's best for them. And then in 2000, President Clinton signed the executive order to increase employment for individuals with disabilities in the federal government. So we're getting really closer to today with some of the things we say. So again, I said more assistive technology acts are established to maximize ability to select, obtain, and use assistive devices for individuals. There's some amendments to the ADA. In 2008, it expanded what they defined as a disability and to allow it to cover a larger portion of the population. And then in 2010, a big idea was that when President Obama signed, which is the Patient Protection Affordable Care Act, or we know as the Affordable Care Act, it made a big difference in the fact that it allowed individuals with disabilities, it kind of guaranteed more of an insurance, being able to be on insurances. Because prior to this, I mean, insurances were denying people that had significant disabilities. So you couldn't have coverage. And then what do you do, right? If you have a job, sometimes those group policies, you could be a part of. But if you're outside of that, or you are an independent business owner, where are you going to get your insurance from? So that made a difference in addition to other things like allowing kids to be on for longer, to 26, and things like that. Now, if we look a little bit in the last 10 to 15 years, we're talking about the 2013 Rehab Act. It made some updates to include that you can discriminate in job bases that go to federal contractors and subcontractors. They can't be discriminatory. The Workforce Innovation and Opportunities Act to get more individuals in the government that have disabilities. And then the Rehab Act was amended in 2017. So we look at all, and this kind of says that individuals, even if you need personal assistance, somebody to help you at the job, then employers can allow those individuals to come into the workforce and have the support system with them while they're there. So there are jobs out there in the independent living community and the vocational rehab community that do things like that, that have buddies for people that have maybe some intellectual disability or maybe a mobility disability. Might need somebody to help them toilet during the day or something like that. There are jobs that allow that to happen. So this is where we are when we talk about really where our disability rights are right now. But there's still, like I said, a lot that we can still work on to improve access and inclusion for these individuals in our population. I'm Dr. Julio Martinez-Vestrini, and I will be talking about the terminology in ableism. As I was coming in, I met two of my colleagues and my friends, and we were discussing, and I told them, oh, I need to go. I have a conference on ableism. And the question was, what is ableism? And that's the reason why we're having this conversation today. Ableism is defined by the outward dictionary, discrimination in favor of able-bodied people. Now, Jans defines this in a different way. All of us, we have a construct of what is the human body, the perfect, full human body. And that's depending on our beliefs, our processes, and our practices. For which, ableism is defined as disability will make that full body perception to look diminished due to disability. Okay. Now we see ableisms in multiple areas, and we'll be discussing specifically in some areas that are relevant to us. Medical practice, our personal physical medicine and rehab practice, as well as the community. We need to frame this thinking that 61 million of Americans have some sort of disability. And we see ableism, and we can see here, what is the physician perception? This study that was done on primary care providers, and about 50% of primary care providers feel strongly that they welcome patients with disabilities, 57%. With that said, only 41% feel very confident. So you can see a little gap there between the ones that are accepting patients with disability to the one that they feel very comfortable, very confident in being able to manage these patients and fulfill their needs. And we're talking about primary care provider. Now 18% of physicians in primary care strongly agree that healthcare system often treat patients with disability unfairly. So we will see ableism in our practice, and I want to just bring attention specifically instrument that we use all the time, a functional instrument like the Short Form 36. The Short Form 36 or SF-36 confounds health with function. It's a functional tool, so we are really testing function. We're not testing necessarily quality of life, and that is where there is a discrimination. Sometimes we will be confusing function or disabilities with quality of life. This specific section of our medical practice is what actually motivated and resulted in this presentation. We start having this conversation in our Diversity and Inclusion Committee, and this resulted in this presentation. I was seeing a patient with an internal medicine resident during their PMR rotation, and he was presenting a 45-year-old wheelchair-bound patient. We look at the chart, and the problem list is wheelchair-bound. And I start doing some research where that term is coming from. It was coming from the problem list, which in turn was coming from ICD-10. And as I was doing this deck of flights, gladly, I discovered that in October 2023, you don't see wheelchair-bound anymore as a diagnosis. Now the term Z99.3, it's describing the diagnosis now is wheelchair dependence. Now you have some synonyms, like ICD-10, they have all these different layers. You have the same code, independence and wheelchair. And you can see how wheelchair dependence doesn't sound the same that independent in a wheelchair, or you're a user of a power wheelchair. And the reality is that let's say that this patient is not independent using a wheelchair. Like there is an app for that, there is an ICD-10 code for that, which is Z7409, which are these patients that have difficulty mobilizing using a wheelchair. So we are taking steps in the right direction, we have room to go. Now ableism in medical training, we see that all the time. We are aware and we know that medical students that are in racial or ethnic minorities are underrepresented in medicine. And we also know that they have more difficulty on the matching rates. And we didn't know anything about disability until May 2024. So conveniently, they actually published in JAMA this article, and you will have the references on the app. They actually discovered that medical students that report disability, they have a significant lower matching rates compared to their peers, and it's more dramatic in surgical specialties like orthopedics. Now disability, the ableism in our daily expression, we see it all the time. And I just want to go back to the Oxford Dictionary to define some terms. For example, cripple is defined as severely damaged, dumb, temporarily unable or willing to speak, lame, unable to walk without difficulty due to a foot injury, retarded, less advanced mental, physically, or socially, and moron, person of low intelligence. And those are words that we see all the time, crazy, mad, or insane. As you know, this is related to mental health, mentally ill, nor mentally sound. That's the definition by the Oxford Dictionary. Now these are terms that are painful, and we've done an excellent job using the word disabled instead of cripple. But for example, so one may say, oh, the fireworks yesterday on the PMR party were crazy. We can say they were amazing, they were awesome. Or anyone that didn't go to the PMR party yesterday, they were lame. Well in here, in this deck, it says, well, an alternative for that would be ignorant. I wouldn't say that someone that didn't go to the party would be ignorant. I'm not too sure, but I'm just kidding. So we can say, well, you missed it. But there are terminology that we can use that is not hurtful, that is more productive. And it's important to understand that we don't know everything. And I see language and ableism, how to speak to other people, how to behave as a process. And I really like this, and these are principles that we can use that can help us. And this is a slide from the AARP focusing specifically on ageism. And the first is this, we need to admit that all of us, we are biased. We need to assume that most of our processes may have some sort of bias. Now most of those are unintentional. Number two, we should be open-minded, and we should approach learning with optimism, with willingness to learn, willingness to adjust, rather than being defensive. We say something that is not correct, it's not right, it's not taking the right way, we tend to be defensive. And that is not healthy. So it's a process of learning, it's very important for us to be receptive. And lastly, we as a community, we need to look at what it says and what is done. But not only that, we also need to be aware of what is not said, and what is not done. So these are my references, and as I said, all these are on our app. And I will leave the podium for Dr. William Jones. Just an introduction, and Dr. Martinez very eloquently mentioned this, 62 million adults live with disabilities, which is about 26% of the adult population in the United States. When we look at our own medical colleagues, 4.6% of medical students and 3.1% of physicians identify as having a disability. And practicing physicians with disabilities often face mistreatment from patients, colleagues, peers. They're more likely to have offensive remarks, threats, more predisposed to having physical harm, and unwanted advances. So this is super important, not only for the general population, but also for even our own colleagues as well. People with disabilities are diverse. And some of the important things are disabilities are some are apparent, some are not apparent. So it's always important to be mindful of that as well. So for better or for worse, we are the designators of disability and the gatekeepers of care. So we have a really, really significant position of power and can affect the trajectory of how patients with disabilities can receive care and feel comfortable and open to receiving care. So factors that lead to poor outcomes, and Dr. Martinez touched upon this, misconceptions, rigid thinking about disability, ineffective communication. And then we have repeated poor experiences. You're reluctant to seek care and necessary care. So why is this super important? Well, as physicians, we always want to reduce medical error. Ideally, everyone in this room wants to improve patient outcomes. And everyone wants to improve overall relationship between the patient and the physician as well. The other thing that's super important too is, when you think about it, this can affect anyone. There's no one in this room that's immune to potentially having a disability. And some people have disabilities currently, but some people who are considered themselves able body, within five seconds, that could change. So no one is immune from having a disability whatsoever. So you always want to keep that in mind as well. Things can change quite a bit. And as people get older too, as aging populations, you are going to be more prone to having disabilities. So this will affect people as well. So when we think about barriers to health care for people with disabilities, the big things are the health environment, the health care system itself, clinical practice, and the provider as well. And there are things that we can really do on a day-to-day basis to be mindful. So that way, we reduce these barriers to health care. Maurice Cholos is a pediatric physiatrist, a PM&R member. And I always want to highlight our members. He's done a lot of work on a national level with disability advocacy. And I really like his quote. Nobody feels empowered or incorporated when they're an afterthought, or feel like they're an afterthought. And there's nothing that proves you're an afterthought more than when there's no room for you, there's no voice for you, and there's no protocol for you. And it's very clear that nobody even thought about these things and nobody thought that you mattered. So there are really things that we can do on a daily basis. And when we think about the standard patient encounter, I mean, it starts from the appointment time and the referral process. Are we going to do an inpatient visit versus telemedicine visit? What are the pros and cons of this for certain patients? You can think about sometimes it might be easier for certain patients to try to start with a telemedicine visit because of transportation issues. And it might be preferable, too, because if it's a very complicated patient, you might start with a telemedicine visit. You really get the lay of the land. And then that way, when you're bringing the patient in for the inpatient appointment, you already have a good lay of the land. And that way, you're more efficient with what you do and how you treat the patient. And you can get more out of your visit. The clinic space is super, super important. How accessible is your clinical entrance? I mean, if you can't even, if your patient can't even get through your door, they're not going to want to see you. And sometimes it's not you. Sometimes, depending on what hospital system you work in, your building, how old your building is, I mean, you can do the best you can. But these are things you want to consider. How are patients greeted by staff? Do staff really greet them warmly? Or do they kind of feel they have a really odd vibe? How accessible are even the clinic rooms, the tables? How easy is it for your table to lower and raise so you can get the patient onto the table? And then also, is your clinic staff educated on transferring patients safely if they need that as well? And then, so with clinic space, one thing, just as a personal experience, my father, unfortunately, developed multiple myeloma, had a lytic lesion in his spine, had to have treatment for it. And then also, because of the chemotherapy agents and whatnot for treatment, had pretty bad polyneuropathy. So he had to have physical therapy. And my parents chose physical therapy place close by to home. And great, fantastic, don't have to travel too far, excellent. So they go there. And the physical therapy site is on the second floor. And guess what? The elevator is broken. So guess what? They had to take stairs to go up. So asking someone who is kind of recovering from a pretty bad spine injury and also has polyneuropathy to go up a couple of stairs is quite a process. So little things like that, which sometimes are out of our control, but make a really, really big difference. So you need to think about things like that as well. The standard patient encounter, what are your thoughts? What is your body language? What assumptions are you making? And some of our video vignettes really kind of highlight some things. So sometimes we erroneously make assumptions we make. How are you communicating? What frustrations are you encountering? Because sometimes, you're running behind in clinic. And then you have a patient who's pretty complicated. And then you're like, oh, man, I'm half an hour behind. And then your mind is racing on that. Your mind is not present to that patient. That patient's going to know that and sense that. And we all do this. But the stress of feeling behind, challenges of the case. And also, because of that, what are you holding back? And then what difficulties are you encountering with your examination? So if you have a patient you're trying to examine with shoulder pain, with a cervical spinal cord injury, sometimes there are more challenges with the spasticity and things, things of that nature. But you have to kind of be mindful of that. What are you thinking? How can I overcome this? How can I be a little more innovative to kind of get to the answer they want to get to? And then diagnosis and treatment plan. And the big thing is, does the patient feel included in your decision-making process? Do you want to be paternalistic or authoritarian? Are you really partnering with the patient to feel like they're kind of included in the decision-making process? Some things that can happen. Depending on the disability, if it's a congenital disability, they've lived with this their whole entire life. They know more about this than you do. They know more than the medical books. You have to be mindful of that as well, and kind of when you're including that into the process, and just kind of you can learn from them. What can you learn from the patient regarding their condition? What difficulties are you encountering? And then also, is their perceived disability negatively influencing your treatment plan, which kind of goes to your implicit biases? Are you trying to be aware of that? And then what are the barriers to your treatment plan that occur that maybe we consider an able-bodied patient may not have? So these are things you always kind of want to have in the back of your mind and kind of start thinking about on a consistent basis with all your patients. And things you can do in general is just kind of understand that disability does not create barriers, systems do. So it's the system that's the problem, not the patient, and we have to keep that in mind. Look for education outside of academia. Focus on supporting them as a person, not trying to change things. And cultivating mindfulness is one of the biggest things you can do as well. The other thing you can do in terms of just overall education is in terms of a teaching process with, let's say, medical students, residents, definitely include patients with disabilities in the teaching process. It includes clinical exam skills as well. Having a developing education curriculum in disability with staffs and residents, prioritize disability access, make sure patients can't get into the waiting room, make sure the waiting room is accessible. Super, super important. Partner with your physicians and your clinicians as well to make sure they're aware of what's going on. They'll make sure they are aware of things that they can do better as well. And if you see signs or people of ableism occurring and where your patients are not receiving the care they deserve, speak up. Don't be afraid to speak up because it's a team effort. And if you see something, you have to say something. And make sure that you can improve things forever for other people. These are some references, which if you have access to the slides deck, you can easily access. And there are a couple of really excellent TED Talks that you can watch as well that really highlight the importance of being mindful with patients with disabilities and also just trying to overcome ableism. There are also some articles as well too. So these are all in the slide deck. And feel free to use them. If you don't have, if you can't access them for whatever reason, emails should be in the slide deck too. Feel free to email me. Happy to send you the resources that way too. So you all have been listening to us for the past probably over 30 minutes. So now this is our interactive piece of our presentation. So we're going to, you're going to watch a few videos. And this part, I'm going to get your input on what you saw that could be different. So I just want your thoughts on these videos that you'll see. So the first, we're going to play two videos back to back. And then I want to hear from you all on what should have been different and just your observations in the videos. All right, the doctor's going to be in to see you in a little bit. Tell me how things been going. Pretty good. I had a fun but busy weekend. I played basketball. I went to a birthday party. And I played with my cats. Oh, cool. I want to see how you do it. I could never do what you do. You have no life better than I am. Hey, how you doing today? I'm doing good. How are you? I'm doing great. How can I help you today? I'm doing great. How can I help you today? I have a physical therapy appointment. I'm not sure where to go. Yes, ma'am. What's your first and last name? It's Sally Smith. OK. And Sally, you'll be going to the third floor today. OK. So I couldn't help but notice you're in a wheelchair. Yes, ma'am. I've been in a wheelchair 18 years now. I got shot in my senior year. Oh, my goodness. Yes, ma'am. So you work here, though? Yes, ma'am. I've been working here going on two years now. And you're able to do your job from a wheelchair? Yes, ma'am. It don't stop nothing. I just keep going. Pretty much independent. Yeah, OK. That's good. Do people look at you weird? No, ma'am. But they ask me weird questions, but they just be curious. Well, that's good. You probably get a lot of questions. Yes, ma'am. So do you like working here? Yes, ma'am. I love working here. Do you find a lot of people that come in here are in your situation? Yes, ma'am. I see a lot of people, so I give a chance to talk to them and help them. That's good. You're probably able to give people a different perspective then. Yes, ma'am. Motivate. Yeah, that's good. Well, thank you for your help. Yes, ma'am. And I'm glad you like your job. Have a good day. Yes, ma'am. You too. OK, so I want to hear from you all. So who wants to start? So we have three options for the one that are live stream. They can send a question on the live stream. We have the mics with the stands. And if there is difficulty moving, we have a microphone that is also moving around. So on the first video, I felt like the lady that was asking the questions, how are you doing, how was your weekend, was condescending to the patient in the wheelchair and saying, I could never do what you do. And what makes it different? What's the difference? People go to birthday parties. They go to games, all of that. So she didn't seem to realize that that was a potential that she could accomplish in a weekend because she was in a wheelchair. And of course, the second patient, I'll leave that to somebody else. Well, she just couldn't get her questions answered, it seemed like. He would answer her question as she asked, but then there were more questions. She just couldn't seem to accept the fact that he was employed. He enjoyed his job. He'd been there for a while. He didn't see himself as being disadvantaged in any way because of the circumstances that he'd been through. I love that you use video, it really, they say a picture is worth a thousand words and a video must be ten thousand or something like that. Yeah, I mean, I think that we see this, and the challenge is our own moral courage in situations where we may observe this and might point out, like, this is inappropriate, you know, because some people genuinely just are that oblivious to not think that maybe you're being rude. But then I think as a black woman, I think about how many times people just say and ask ridiculous things that they feel like they have the privilege to just inquire about in your personal being, in your hair, in your whatever. And it's just a matter of, there's a lot of just, people just don't know. But I would like to say I loved how he portrayed the response, because this is his job. He's got to deal with the public, no matter how ignorant or whatever. And we have to think about how stressful that additional layer must be for certain people. I'd also like to just take a minute to put a plug for one of the attendings I work with at UC Davis, John Dorsett, who was one of the first quadriplegics in a chair and has taught for many, many years, who actually, ironically, was my resident when I used to be there. And it's really interesting, on the other hand, how because he's there for some of the patients, it's very empowering. And it also helps to redefine the way in which people talk to people, because he's the doctor, and you can't just say stupid stuff or ask stupid questions. So it really also depends on the person. And I think the first one, there was an innocence there. I mean, it can be taken different ways. I mean, she may genuinely have been like, God, I wish I could figure out my time on how to do that many things. But the patient clearly was like, well, I was like, why is this woman saying this? But sometimes there can be a disconnect in terms of the intention and in terms of how it's perceived, too. And I think that could come out from that as well. So I'll build up on what she mentioned. Because if you looked at that first video, the employee or the staff, as she mentioned, was not even aware that she was coming across in a different way to the patient. And so this is what we would call some form of microaggression. Because she comes from, she has this stereotype that someone who is in a chair would not be able to do all those things. So it's also important for us to understand that that can be one of our biases, ableism. And I wonder, I don't know if anyone on the panel would know if ableism is already one of the traits that's being assessed in the IAT. Because we know that the implicit bias test. Because it's important for us and our staff. Because you're already put, you already suggested some ways for us to educate our staff. So I have not looked at the IAT recently. I don't know if they've included the construct of ableism as one of the things where we can be totally blind and be unwittingly microaggress on people such as that woman in the wheelchair. So I thank you for bringing up that point. So yes, the IAT does have a disability question that you can go through. I think my mic's on. Yeah, a question that you can go through where it does ask those questions and you get to decide when you take the test what your positives in those situations, positive and negatives are. So it is a part of the IAT. And yeah, if you guys haven't heard, like she mentioned, the Harvard implicit, it's basically an implicit bias algorithm where you can go online and it's, oh, it covers many different things from race to even colorism to religion to look short, tall. It asks, you can take these tests and it basically will tell you based on how quickly you respond to some of the questions, whether you're thinking more on a topic or whether you have a positive or negative preference to whatever the question that they're asking. So you can find this online, a small component. I think the larger component, if you wanna do all of it, there's a cost to it, but you can see aspects of it. Hi, my name is Nora. To give a brief visual introduction, I am a white woman with medium-length brown hair and large black and white glasses. That's to aid in accessibility for anyone in the room who might have low vision or for those who are joining online who cannot see me. I wanted to address the overarching theme of both of them aside from curiosity, which is inspiration porn, which is the thing that we talk about in disability spaces where the person who is disabled serves as an inspiration to non-disabled people, not because they have done something truly inspirational, but because they exist in society with a disability. And that is what both of those seem to be getting at. Yes, perhaps some of it is innocuous or misinterpreted or whatever, but a lot of it does seem to be, oh my God, I could never be you. You exist and you're like that. Oh my goodness. That's what both of those are. And I think that that is, when we talk about our biases, that I think is a very entrenched one that both of these vignettes explain very, very well. Thank you. We're gonna move to the next video. Good morning. Hello. How are you doing this morning? So good to see you. Hi. Hey. So I'm gonna bring you over to the bed cause that's how I like to start my visits. Oh no, I can get it. Okay, hold on a second. Let me go grab one of the nurses to try to see if they can help you transfer over to the bed. You sure? Yeah, no, I'm fine. Okay. Yeah. Okay, so before we get started, I wanna make sure, do I need to call anyone to assist us with this appointment today? Do you have a caregiver that I need to call and get on the line? No, I don't have one. You don't have a caregiver. Who helps you understand the information that we're gonna talk about today? I'm completely competent. Okay. And then last, before we get started, it'll be probably about a 20 minute appointment. Do I need to make sure your transportation knows that you'll be ready in about 20 minutes? I drove myself. Okay, okay. Well, let me log onto the computer and then we'll get started with your visit today. Okay. Thoughts on this video? So I'll ask you a question on this video and this is a question to the audience. What did you think when she first walked in the room and introduced herself? What did you feel about that experience? Well, she starts there, but the whole thing is minimizing and there is a large current of the person being helpless and requiring help from other people. I understand sometimes, I don't know, getting to, actually, the first video, I felt that she was a little bit too far away. In this video, it was just almost like too close and too low and getting into their space, touching the chair without having permission, just like the assumption that this person cannot do anything, cannot understand anything. I just, I know for me, when I go in a room and I sit down, I know that's good to be on the same level, but that little quick going down to shake her hand and get back up didn't, for me, I just thought that was unnecessary. It didn't look like a genuine, I'm on your level. It would've been just better for her, just go ahead and stand, you were gonna stand anyway, just stand and shake her hand, you know? And like everybody said, she was just assumed the least of her in every area, the wheelchair, competency, driving, all of that. She could've asked a more open-ended questions, I think, not from the standpoint of, I know that you can't, but just do you need, and keep moving, but anyway, it was bad. So. Yeah, to me, combined with that initial squat down, her tone, it almost gave me the feeling that there was a little bit of infantilizing going on almost, she had that sudden increase in pitch in her voice, like, hey, almost kind of a coddling nature to it. So, and yeah, as everyone else has stated, it was quite uncomfortable. So, I mean, clearly there were some incorrect assumptions made by the practitioner towards the patient, but when her assumptions were seemingly proven wrong, could that possibly have had a positive effect on her behavior going forward? I guess my question is, how do you know that her actions were as a result of some unconscious bias as opposed to not being fully aware of what the capabilities of a person a patient like that would be? That's actually the definition of unconscious bias. She assumed, she didn't ask, if you have a question, just ask, and that's the situation is it's uncomfortable to ask the question that we need to ask, and again, it's a learning process. I hope that this practitioner, when they encounter the patient in the future, and any other patient that comes in a wheelchair, they don't touch the wheelchair, right? Or they can ask for help. Do you need help? And again, sometimes if you don't know what to do, the best thing is to ask. One thing that impressed me as well is the fact that this practitioner assumed that there was also a mental disability, not only a physical disability. So you're disabled, then that means that nothing's working correctly, and that's, we see it all the time. And I think too, there are situations when it's not so blatant. So when a patient brings a family member to the appointment, and instead of you looking at the patient, you're looking at the family member, it makes the patient feel like they're not competent enough to answer the questions. So I think there are subtle ways. I tried to make this case, of course, not subtle at all so you could see everything. So I think we accomplished that. So we're gonna move to the next case. All right, Maria. My computer won't turn on. What do I do? I'm not sure. I've never fixed one before. Great. So this is the blind leading the blind. Well, at least we're in this together. What about the power button? Nothing happened. Maybe it's broken. You think? That's brilliant detective work. Thanks. Maybe we should try unplugging it and plugging it back in. Sounds good. We are the blind leading the blind. Yep. Okay, so thoughts on this one? Thank you. So I just wanna make a comment on the last video and then jump into this one. I think there are cultural colloquialism, things that we have been taught that we carry on into our practice. And so I wanna hold some space for acknowledging that people say things without understanding the meaning behind it. That has happened for me. And then it's about how you call them into a space to talk about it rather than calling them out to make sure that they don't feel punitive or that something truly is wrong. But how do you bring them into an area of a growth mindset for this video? And I think that also happens with the last video. I think I'm a PEDS rehab provider. And so bending down, going to a patient level is something that I commonly do. And then to reframe it, I'm also thinking about the family, the siblings, the support system. And so I just standardized to everyone that these are questions that I ask rather than only talk to a parent, only talk to a sibling, only talk to a child. I'm kind of starting the conversation with some things that I do this universally just so that I can have a better understanding of how we can carry this conversation in partnership. But I think in this situation, it's clear that both of them necessarily were saying things that can be harmful and hurtful without truly knowing necessarily the meaning behind it. I think one for me was just knowing like the word stakeholder is commonly used all the time in research and not knowing where that word comes from and the cultural, racial, and just negative connotation around that. And so like little things like this, even myself as a provider that does research and not noticing things like blind leading the blind or using things that may have a religious connotation, all of these things are things that we may be taught and just carry on. And it's hard to sit with that when you're like, oh, I didn't realize that it hurts someone or the implication behind it when I use it in this frame of mind. But I think calling people into a space and allowing them to share it and then share your understanding of it is the first place to kind of go through changing something like this. Just a quick thing. I don't know if it was on purpose or if I'm reading too much but it looked like the person to the left, even when the blind leading the blind comment was first presented, like it looked like they were uncomfortable with it. And then the other person just kept repeating the phrasing but no thing was done. Just like he was saying about if you're like feeling uncomfortable, you're with a peer, you're in a small environment and kind of like maybe if there is a chance for some education or reflection or something to be able to go beyond the listening but also to the act. Yeah, to the acting, to change the behavior in the future. So we need to take into consideration that in this process of education, please come to the front, sorry. In this process of education, there is a setting that may be appropriate or not. For example, if you are with a colleague and they say something like this and you are in your cubicle, you can always say, by the way, you know the connotation of this phrase? Or do you know what this means? But for example, it's in the process of rounding. You may not like to stop the round just to say something but you'll actually want to sidebar and tell the resident or the attending or whoever is the person, nurse, scribe, let's chat about this once we're done rounding and just come with that. Remember, we should assume that there is no ill intent. It's just an honest, very poorly chosen word, or we don't even know. And that's the reason why I actually added the definition, what the lame means, for example, because we see that word all the time, all over the place. It's important for us to understand where the language is coming from. And one last thought on this. So that saying is kind of a perfect example of basically using a physical disability and making it more of a cognitive issue, right? Because clearly they were pressing the right buttons on the computer and they couldn't get it to come on. And it was more about the cognition because they didn't have the cognitive ability or the IT skills to get the thing to work. But instead they used a physical disability to describe their cognitive problem. So think about things like that. Okay, we're going to watch the next video. I'm here to check in for an appointment. Hello, how you doing? I'm good, how you doing? Good, good, and what is that last name again? My last name is Staten. Staten, let's see. All right, Ms. Staten, you did have an appointment at one o'clock, but your appointment, you're at, let's see, 145, I believe. I will have to reschedule you since you're late for your appointment. No, I'm not being rescheduled. I had to drive 45 minutes to get here. I need to see my doctor today. Well, well, well, I'm sorry. You don't have to be crazy or psychotic. Let me go check with the doctor first. Psychotic? I'm not being psychotic. I just need to see my doctor. Yes, ma'am, let me check with the doctor first. Okay, let's do that. Give me one moment. Thank you. Thoughts? Just remember, you can also go to the front microphone if you prefer. She's pregnant. She's starting to waddle. I think besides the obvious one of the crazy and psychotic, I'm something that we don't always think about is I used to be in the position of the person who was often getting yelled at for patients being late for the appointments and something that wasn't always thought about is why they were late and accessibility to appointments and patients having to take a bus or a bus wouldn't pick them up because let's say there was already a wheelchair on the bus and that bus could only take one wheelchair so I think that is a bigger picture of this video and asking the why is important. I totally agree she before even speaking with the doctor she made the decision on her own instead of like you said inquiring and seeing you know why the patient was late. I actually wasn't sure when the video first started if it was going to illustrate what it did illustrate or if it was going to be the other way around where it was closer to what you were talking about where the reason the patient was late was something to do with accessibility and I think one thing I've been thinking about through this whole talk is another dimension of accessibility in medicine which is patients with non-physical disabilities specifically autism and how situations like that where you make a mistake and you know you've made the mistake of being late for your appointment and then there are consequences and you don't know what to do as the patient if if a patient is maybe it's their first time going to an appointment by themselves and they're trying to follow the rules because with autism it's it's all all rules and they're hard to understand like how best to support someone who shows up and then does have an outburst doesn't have to be the stereotyped autism meltdown but just is what's perceived as rude to the person behind the desk because they don't know what to do in that situation because they did all the things they knew they were supposed to do they got they drove to the office they found the right office and they got there and they said hi I'm here to see my doctor and then they were told no sorry you can't so remembering that the person may know and this applies to people like with anxiety too they may know that they've screwed up and they're late but you know keeping in mind that being kind and and using a tone of non-judgment in moments like that and assuming good intentions that the patient isn't being disrespectful by being 45 minutes late because usually that's not their intention can be really important to help those moments go well for both people I just I always like to take opportunities to make good suggestions as well and I'm a traumatic brain injury specialist and so I attempt wherever I'm working to orient the team that the patient population that I serve partly by definition have great difficulty with organization planning and punctuality issues and I'll build in a little cushion if I can and I'll often try to set up if it's possible but support systems that they have after the initial evaluation do telemedicine because it's so confusing sometimes that we'll lose the time I'm trying to navigate the system and it's not we're in the eye center there's no signs they're trying to find TBI clinic the parking and I think we need to do better at as clinicians like the providers to educate our staff about our own personal preferences because literally I've had them ask me do you want to counsel this patient there were 15 minutes late and I'm like no this person just drove three hours I'm not going to counsel them and that comes down to that discretion as a professional and when we have to decide you know the joy of seeing our patients versus worrying about if we're gonna be done by five o'clock especially if somebody that you just changed meds you have you things going on and they've actually made it there so I think we need to help be part of the solution in those situations and I think again there's a lot of undiagnosed TB eyes where people are accused of being behavioral and having psychiatric issues and things like that and we need to try to catch them in our systems especially as physiatrists because I have a lot of people that were being seen in sports clinic and the spine and this and that and somehow somebody figured out well what's going on with this person and they found out that they fell or they whatever happened and they end up in TBI clinic eventually and then that's when the person gets clarification on the changes that they're having they may not even be aware of what their issues are so I think it's always an opportunity for those things thank you so we're going to watch now patient perspective which I think is very impactful and kind of close up this session for us my name is Rachel and I have a cervical spinal cord injury I can't walk or stand and I have no sensation of low my level of injury and I've been injured for 28 years I've been asked to share what I want you to know about ableism and honestly I had to think about it not because I haven't experienced it but because it is such a persistent and pervasive feature of my life that if I dwelled on it it would consume me and get in the way of how I want to spend my days and how I want to carry myself I would define ableism as a combination of stereotyping implicit bias and system level discrimination it exists in all areas of my life but I wanted to share a few examples from my medical care when receiving exams and evaluations I have had medical students answer questions that the attending directed towards me and the attending did not correct them while getting a mammogram I saw the medical staff right do the best you can in a wheelchair as if a suboptimal image was an acceptable outcome because I was difficult to image when seeing the nurse practitioner for my primary care I was asked to drink a cup of water because my blood pressure was low and I refused a blood pressure is low because I have a cervical spinal cord injury and drinking a cup of water wasn't going to fix it I had a family practice doctor Lansing abscess on my back without asking or telling me I only figured out what he was doing because I got dysreflexic I guess he assumed since I had no sensation there that it could slice me open without hurting me I broke a metacarpal in my hand once pretty badly and when I went to do it x-rays no one asked for insurance and I was almost sent to collections for not paying and maybe it was an oversight but I think they assumed that I didn't have insurance because I'm in a wheelchair after bladder augmentation and diversion surgery I was in a step-down unit and was profusely sweating my gown and sheets had to be changed twice daily my nurse thought I had bad anxiety and so she got me a benzo prescription to manage my anxiety and it turns out I was dysreflexic because I have massive wound infection at the surgical site and finally lately I've noticed that there are policies around cancellations that make it more difficult to get an appointment so if I have to cancel because my wheelchair breaks or I fall and get stuck on the floor both of which have happened I might not be able to see my doctor for quite a while I get punished because of my disability for things I can't always control the end result of all this is that I delay medical care or I don't seek it when I should I don't trust the medical system to take care of me and in fact I worry that they'll harm me and what I want you to know is I'm tired of having to constantly advocate for myself in all areas of my life ableism you know the persistent and pervasive stereotyping implicit bias and system level discrimination is exhausting what I need from you is to advocate and educate your peers I need you to help change the medical system so I can trust it again so I can stop delaying or avoiding medical care and after listening to me talk maybe you can guess that I'm educated but would you guess that I have a PhD I'm an associate professor in PM&R at an academic medical system and in the project director of a spinal cord injury model system you know ableism affects everyone who is disabled being highly educated and well resourced with excellent access to medical experts doesn't stop it I need you to remember that and I hope you will advocate for me and others like me to reduce the impact of ableism on health care delivery thank you so any thoughts on dr. Cowan's experiences as a PhD she's our model system director at UAB phenomenal researcher and this is her experience with our our health care system while you were showing the videos I was I'm a spout what I was practicing spinal cord physiatry for a while at the University of Miami before I shifted move to a different field an area and right next to me is another spinal cord physiatrist so we have had the wonderful privilege of working with people like her but but I was but as you were showing this videos just going back to what she was saying my colleague you were saying these are things that should be part of the medical curriculum so I I am involved in teaching implicit bias for the residents in my program but these are things that have to be learned by other physicians because they do interface with with those physicians and so I hope that this are wonderful examples and I hope that you at least in your institution will be partnering with the College of Medicine to show some of this as part of teaching patient care in for first and second year medical students they have standardized patients we have standardized patients most of them are not in chairs or have other disabilities so it is important that that is included in part of training so thank you for this all these videos and I hope that you really get more mileage from this apart from this conference I appreciate it so one thing that we are doing so one thing that we are doing just through the DNI committee is we are developing curriculum looking at diversity inclusion equity inclusion and ableism is a big portion of it so ideally this will be something that we can route to all residency programs and also a team our members as a whole but this will be things like you know instructional videos like this in vignettes will be part of our part of that curriculum that will be accessible to residency programs program directors that way they can educate residents and medical students on various topics so yes we are we're working on it hopefully by January 26 I just I just want to plug in it's not a self-promotion but I was part of a group of physiatrists that have published a series of a couple of articles about disability medical curriculum and education and there's actually one that is called like the time is now and it's a primer for physiatrists to become champions wherever they are in order to start these one one-to-one education but also changes in the system in order to help as much as possible to include disability management in the medical curriculum which is so important so I wanted to if you guys are gonna respond I don't want to speak over you right hi Nora again so I appreciate all of the conversation around education especially early and often in medical education it's important it's crucial but if we don't fix the systemic issues and the structural issues and the built issues it won't get better and if we're talking about like structural and systemic ableism yes we know that a big reason that there are health disparities for people with disabilities like is the lack of knowledge among clinicians but it's also that there isn't widespread express accessible medical diagnostic equipment it's also like even if there is people don't know how to use it it's that people die waiting for care it's that we still have laws that prevent you from getting on the insurance that you need to be on that come from the Nixon administration when you get social security disability and it's all of it and yes there are new changes yes there's stuff from the US Access Board that just finally got adopted by the Department of Justice but it's about accessible like scales and I've been in groups that have advocated to the AMA about accessible medical diagnostic equipment and we are saying people are dying and we are getting met with well it's too expensive and to your point this is anybody like if you look at like Susan's on tech there's a like illness in its metaphors there's really famous discourse about this of this is everybody one day this is you and it is frightening to hear physicians argue against scales that can weigh people who have disabilities who use a wheelchair who need dose-dependent medication who might die if they get it wrong because it's too expensive because this could be you and your life is worth more than the cost of the scale period it just is and so we should talk about education because education helps us know that this is a problem but we need to be advocates and we need to work for a more inclusive health care system from the ground up well we're at the end of our session but we're free we'll be around here to take more questions if anybody has any questions or comments for us so thank you all for being here thank you

disability rights

ableism

medical field

Saloni Sharma

Braille

Americans with Disabilities Act

communication tools

biases

microaggressions

inclusive practices

patient-physician interactions