Breaking down all things hella ethical!
Dr. Holly Tabor, Associate Professor of Medicine and Associate Director of the Stanford Center for Biomedical Ethics, joins me for an in-depth and wide-ranging talk about everything from the role of ethics committees to the rather shocking findings of a study involving competitors in the Special Olympics.
This is a long interview with tons of good information for y’all so here’s the breakdown so you can find specific topics (full transcript in the “Transcript” tab below):
06:45: Ethics Committees and ethics consults in medical centers
15:30: The ethics of caring for violent and abusive patients and families
17:30: When is it unethical to ask a nurse to continue to see an abusive patient?
22:00: How do we take care of people with disabilities? And how might improving that care improve care for everyone?
24:30: Perceptions of disabilities and how people with disabilities and family members interact with the healthcare system
30:00: Special Olympics, how to participate, the Games, health screenings for athletes
33:00: How medical providers communicate with people with disabilities
38:00: Should we rethink the intake of patients with disabilities?
39:00: How can we individualize their experience?
42:30: Importance of preventative health for those with disabilities
44:30: Presuming competence for those with disabilities
47:30: Former UCSF GI fellow, now quadriplegic after a biking accident (Check out his full interview here)
50:00: Dr. Tabor’s experience with her son’s autism
51:50: The “R” word and why it’s not cool
53:00: Controversy around the term “short bus”
Check out the original interview here on Facebook, and if you’d rather listen to it as a podcast on your commute, check us out on Soundcloud and iTunes. Share with your friends and family and let us know what you think!
– That’s to synchronize audio z-pack, okay? Because I have with me today a very special guest, a Stanford Professor type. Why? Because I’m in the Bay Area doing shows on the road, and a good friend of mine, Dr. Patrick Ha, who you’ve seen on the show and his wife Julie, introduced me to Dr. Holly Tabor, who is associate professor of medicine at Stanford and chair of some kind of bio
– Yeah I’m associate director of the Stanford Center for Biomedical Ethics here at Stanford.
– What a gunner. Oh my gosh, so bioethics is interesting to me because I don’t really understand what you guys do, but we often rely on you in these really difficult times. Like, someone comes in with a DNR tattoo on their chest, and you honor it right?
– Or, there’s a conflict in the ICU of a million different kinds, and so you sit on the committee here as well.
– I do, and actually I’m about to be the co-chair of the committee too. So, yeah, I do a lot of that work, and I help around the ethics consultation service here at the adult Hospital, and I’m also on the Children’s Hospital committee.
– Wow, so, you do patients of all ages then?
– Yeah, I focus more of my time on adults, but yes, all ages.
– Got it. So, and over here Packard is our children’s hospital, and so, that’s where you see the kids. Well, here’s a question. So, how did you get into this? Because when I call and ethics consult again, it’s like this black box. Sometimes there’s a hospitalist on there. There’s some like weird professorial type. There’s always just like strange stuff. How did you become a…
– Well, there’s two parts to that. I think what does the Ethics Committee do, and who’s on it? And then how did I get into it? I got into it through a very circuitous, roundabout way as I think sometimes some people have interesting stories in medicine and related fields of how they got into doing what they’re doing. So, I actually started out majoring in history of science in college, and so I was really interested–
– That’s a thing?
– That’s a thing. In some places it’s a thing, yeah.
– Wow. So, like, Pasteur, my boy.
– Yeah, and a lot of Koch’s Postulates and infectious disease.
– Oh, you mean the ones that aren’t true according to Duesberg, who says HIV doesn’t cause AIDS, yeah.
– Exactly. So yeah, I did my undergrad research thesis on diphtheria screening in the 20s. So, that was way back when.
– Okay, when you defended your thesis, did you dress as a flapper?
– I did not, but that would have been good. I wish I had done that.
– With pro-tes-sis?
– I think if I did it now maybe I would have actually done that.
– The coughing flapper, that would have been a legendary PhD defense.
– Then my defense would have been viral. It would have been.
– It would have been viral. You would have been all over YouTube.
– Yeah, but no. So I majored in that. I was really interested in the intersections between science and society. I thought I wanted to be an MD, and so, a lot of people who do History of Science, at least where I was, it’s a way to also be pre-med and do something that’s not just straight science, straight bio, and so, I thought I wanted to be an MD, but I was also really interested in research. So, after college I decided I wanted to do research for a while, and I did epidemiology research, actually, at UCSF up in San Francisco.
– My hood.
– So, you’re all over my place, man.
– I know we’ve had a lot of, we have a lot of connections.
– You didn’t go to Berkeley at any point?
– No, didn’t go to Berkeley, but, so, yeah, did that, and kind of got really, fell in love with epidemiology and decided that I actually wanted to do epidemiology research. So, I came back to Stanford. Actually to a building that’s, like, right over there, and started PhD in epidemiology. So, so that was like step, twist one.
– Right, right, right.
– And then, I took a genetics course and got really interested in the emerging field of genetic epidemiology. So, I sort of dove into genetics, and I actually did my dissertation research in a genetics lab here in Stanford focusing on candid gene approaches to complex traits which is like a whole other topic about genetics, but partly because of my interest in the intersections of Science and Society, I got really interested in ethical issues in genetics, and I did a postdoc that was kind of retraining basic scientists to be ethicists here at the Stanford center for biomedical ethics.
– Training basic scientists to be ethicists?
– And in part, it was a funding through the national Human Genome Research Institute, NIH, and it was really trying to get people who had a really firm understanding of the science to be thinking about ethics and to be thinking about what kinds of research questions we have to ask and ethics around genetics which is a funding Mandate of the national Human Genome Research Institute.
– Oh, okay so they’re mandated to do this because, you know, the Nazis did all kinds of genetic stuff, but there was zero ethics.
– Yeah, that’s part of it which is also where a lot of our research regulations come from that govern IRB’s and informed consent and so forth, but also, when the Human Genome Project was funded initially, there actually was a set aside, a requirement or certain proportion of it to be dedicated to ethical, legal, and social implications of genetics research. So, to this day it’s actually a congressional mandate for a percentage of the NHGRI budget to be focused on ethics research.
– Cool, so you kind of filled that space, and you were training these scientists to think like, less like scientists, and also like people who are trying to think ethically, and what are the consequences of–
– Yeah, and some of that is philosophical principles of ethics. The thing you were saying you call an Ethics consult in a hospital, and you don’t know who you’re going to get. It is a very multidisciplinary field, and it’s been a little amorphous, and there’s actually an effort in the field to sort of consolidate. I can talk about that in a second, but, so, I started this training to focus on ethics issues in genetics, and as part of that I’m like, I should learn about clinical ethics. I should find out what that’s about. I should find out what clinical ethicist do. I should get some training in that so I understand it because it’s such a foundational part of autonomy and beneficence, and non-maleficence and justice, the four classic principles of bioethics, and–
– So, one of the principles of bioethics was a Disney movie starring Angelina Jolie, Maleficent?
– Yeah, Maleficent, right. Yeah, kind of, yeah. that’s a good point. I should make a slide with that.
– I’m just saying, I’m always thinking people.
– Yeah, yeah, so, and so, I really loved clinical ethics, and I actually really enjoy doing it and it actually complimented to sort of more of the less tangible research I was doing. I love my research, but it’s a lot less tangible than dealing with the kinds of ethical issues that you see in the hospital and even in the outpatient setting. So, I really became, did a lot of training clinical ethics and made that a key part of what I do, and so ever since then what I do is really, a large part of my work is focused on clinical ethics. And so, we have, JCAHO requires–
– Oh, you said the J-word.
– By the way, I want to say this. She said JCAHO. She didn’t say The Joint Commission. She said JCAHO.
– Is that bad?
– No you’re with me. I always get crapped on because people are like, you know they haven’t been calling themselves JCAHO for 15 years, and I’m like they haven’t earned anything but a JCAHO.
– Well, I’m probably gonna, correct me if I get stuff wrong, but yeah–
– No, no, you got it right.
– So, they some kind, I believe they require some kind of ethics committee from those hospitals, but they don’t say what that is. So, is actually kind of a joke that an Ethics Committee can be a rabbi, a priest, and a box of donuts.
– That’s what it is at the other Hospital, Community Hospital across the bay where I worked. It was like let’s call the Ethics Committee, and it was like, “Why is the least ethical guy I know chairing the committee?”
– That’s not a good sign.
– Yeah, exactly.
– So, but I think most academic medical centers and certainly places I’ve worked, there’s an effort to make an Ethics Committee include people who have expertise to be representative of different stakeholders within the institutions. So, really trying to have people with different disciplines be involved because I can’t even tell you the number of times that nurses, respiratory therapists, other people have a different, social workers have different perspectives on the ethical issues that, if you just have physicians in the room, you wouldn’t necessarily hear that perspective.
– And then–
– That makes perfect sense.
– Yeah, and then also there’s actually an effort in my field to actually do certification and training for ethics consultants. So, in the very near future, they’re actually will be more of a formal certification process and a sort of test to show that you actually have the basic skills and the competencies. Which a test, which presumably I and others who do this work will pass, but also a path to help trainees to learn how to do that.
– To learn how to do it. Well, so let me ask you a practical question then. So all that is your path to get to this. I am Charlie Gard’s parents, and I’m in London in the hospital, and I want to do X. I want to take him out to the Vatican, and we call ya’ll. We call the ethics consult because the hospitalist is like, the pediatric hospitalist is like, “I’m out.”
– You’re out, yeah.
– This is too much. I don’t know what the answer is. How does this process then, how do you start thinking about this? How do you intake the information, the patient?
– Yeah, well, the Charlie Gard case, and what are called sort of futility and medical and effective cases are kind of their own, they have some unique features to them, especially in certain National and even State contexts, and I could address just that. But I think if someone calls a consult– Maybe I can twist the example a little bit to be a consult from the ICU. The patient has an advanced directive that says he would only want this and not that, and the wife says something else, and the son says something else–
– That never happens, by the way. This is totally theoretical, we never see this.
– And the team thinks they really shouldn’t do this procedure, you know, and so there’s conflict. There’s conflict about values, and there’s conflict about effectiveness. There’s conflict about professionalism and professional ethics, and what providers are obliged and not obliged to do under certain circumstances where we think things will or won’t work. And I think in our institution and I think in a lot of institutions where there’s an active ethics committee and ethics consultants, we come in and we talk to as many of the involved parties as we possibly can. So we talk to the treating team, and we try to make that the whole team, and as many of the affiliated teams as we can. We talk to the patient if the patient’s able to talk to us. We talk to the family members, either the actual surrogate, or if sometimes we’re deciding who the most appropriate surrogate is if that’s not clear. We have conversations, we provide feedback about the law, about policies here in our institution, which are guided by the law, and we help with negotiation, and decision making, conflict mediation. Sometimes over several meetings. And we usually make a recommendation. Our recommendations are not binding.
– Right, so, yeah.
– Yeah, so we’re not the police, and the goal is almost always not to say, ‘Oh, you shouldn’t be doing that’, so we never do that, but we mostly don’t do that. And to be collaborative, but also to try to sort of improve communication, improve outcomes. A lot of it ends up being conflict mediation, a lot of it ends up being, we have more time to sit and listen and talk with people than a lot of other people do. So sometimes, just by our going around talking with everybody, or getting everybody in the same room to talk, we can often provide clarity or help everyone get to a place where everyone can say, ‘Oh, okay, the problem here is actually X, not Y’.
– Yeah, yeah, yeah.
– The problem here really is, the family is really traumatized by worrying about the patient being in pain and so they’re saying all these other things, but that’s not actually really what they’re worried about. They’re worried about pain, you know? Or, they’re worried about time to have this other family member come visit, or, you know. So you end up kind of getting at what the real, core issue is.
– And it often seems to be that that’s the case. That the stated problem is actually a veneer over what’s really going on, and the primary team might not have time to get at the heart of what’s going on, they may not have the capacity or the skillset to get at the heart.
– So, even though we’re encouraged to have these great bedside manners and we practice on fake patients, and we do all that, most of us are a little bit off in terms of our ability to really draw it out. And some are gifted. Now I think this can actually be trained to people.
– I think so too, although actually, your TED talk where you talk about the robot, that empathy robot I agree it can be taught. I think some people are better than others. I think some disciplines encourage it and cultivate it more than others. I’m not gonna name any disciplines but some disciplines are better than others.
– I will.
– You can, I mean, I’ll just look around. But I think that the other thing that I have, so I actually have a PhD, not an MD. But I’ve been doing this kind of work for a while and I actually think that, and I have colleagues who also have backgrounds in philosophy and other kinds of disciplines but who’ve worked in healthcare enough that they really know a lot of the lingo, they know about what they don’t know, and they know when to ask questions, but we actually get the privilege of being able to say, ‘I’m sorry, I don’t understand that, why can’t you do the X, or why is it Y?’
– Right, right, almost from a patient type perspective.
– And sometimes we know what the answer is or we guess what the answer is and we’re right, but I think even asking that question, there’s a way you can ask that by not being an MD that is, I think, sometimes illuminating and also less threatening to physicians.
– Yeah, yeah.
– Because it’s like, ‘Well, I don’t understand. Why?’ , you know? And then they’re like, ‘Well, now that you mention it, I’m not sure why.’ So you can have different kinds of conversations.
– This happens quite a bit, and like you said, nurses are a big part of it, doctors are. And all their perspectives are important to loop in. And it’s a JCAHO requirement to have an Ethics Committee.
– That’s my understanding, we can check that.
– Feels right to me.
– But I think what it is, and what it looks like is not specified, or at least it didn’t use to be.
– Right, but one thing we do know, you can’t have open drinks while you’re ‘juditiarating’. Is that the word, ‘juditiarating’ on a case? Because if JCAHO’s involved they’re like, ‘You can ethical-ate, but you can’t drink Snapple while you do it.’
– No, or there are probably other weird things like, no open toed shoes while you’re–
– Exactly, wait a minute now, mhm. It’s the Stanford way.
– It’s the Stanford way, you’re very in you’re natural habitat.
– Yeah, exactly, my Indian dad is constantly saying, “Why are you wearing your chapels everywhere you go? It’s so unprofessional. Everybody else has the nice Rockport. Because Rockport, very fancy.”
– I love your dad, I’ve never met your dad, but I feel like I’ve met him through your videos.
– By proxy, yeah, yeah, yeah.
– And your mom, but yeah. So, I think ethics committees, part of our job is to listen, part of our job is to provide clarity. And I think the other thing we do that’s not in the real time, is, hey, we’ve been seeing a lot of consults happening around X. What’s going on there in a systems way? What is going on with our policy there? Is there some reason why that keeps happening? Can we work collaboratively to kind of figure out ways we can mitigate, prevent this stuff from happening.
– Bigger picture stuff that you’re picking up because you’re seeing these consults over time, yeah. And are you always on the committee, or do people rotate on and off?
– People rotate on and off. I appear to be always on the committee. I mean, I’m gonna be co-chair of the committee. But we do rotate people, we try to rotate people. Not so frequently they don’t get the benefit of experience, but we try to have new people come on. I didn’t mention, we also try to have community members because it’s pretty important that community members also have a different perspective than hospital employees, so we do that. We try to often have members of communities that we think issues come up around. When I was at my previous institution we intentionally had some disabilities and represented disability communities, because we frequently had consults around that. So, that’s part of it. I mean, obviously it’s hard to have representation you would wanna have from as many communities as possible. We try to mix it up a lot. And then we have a consult service, so we take turns being on call 24/7. And we get a lot of, you know, we’re an active service.
– Busy, yeah, especially at an institution like Stanford where all kinds of stuff is hittin’ the fan in the tertiary referral center. Lemme ask you a favor, I’m gonna have you move your phone.
– Oh, I’m sorry, yeah, yeah.
– No, no, just because it’s gonna vibrate our audio and then this is what’ll happen, I’ll get these emails, ‘Did you have a vibrator on the table, what’s going on?’
– I’m like, ‘It’s called a phone.’
– Very observant audience there.
– Yeah, they are, they are.
– They’re gonna say all kinds of things like, ‘Z-Dog, why is your head shiny?’ Because I’m bald, okay, next! Speaking of that now, there was a– Oh, what was I gonna ask you about? The ethics of, or ethical questions around– Oh! Patients or community members who are sort of in an unhealthy way, either attacking or threatening or stalking medical professionals. Do you get involved with that? Because a lot of our audience has, especially our nurses, have suffered a lot of violence as we see opiod epidemic getting worse, mental health crisis getting worse. Is that purview to what you guys do at all?
– That’s a really interesting question. I’ve definitely seen you guys talk about that on your show, and the different things that you guys put out. To the degree that everything in the hospital is in our purview, yes it is. I think I personally haven’t had much specific work that I’ve done on that recently. But I do think we are constantly talking about navigating really high-stress situations where patients and family members, or surrogates who are in there often push boundaries of behavior that veer into the kind of situation that I think you’re talking about. And how do we ethically provide care? How do we even legally fill our mandates of what we’re required to do under EMTALA in certain situations while still also being a safe workplace. While still maintaining professional integrity and professionalism. I think it’s an ongoing struggle, and I know you guys have talked about this and I don’t think anyone has completely clear answers yet. We are not the people anyone calls first or probably second or third either but I think the issues of how we not only set boundaries, but also coach staff to know how best to handle a situation as it’s starting to occur is certainly an institutional issue that we and others are thinking about a lot.
– Yeah, because it’s like you said. I think we’re trying to figure out, what are those boundaries? When have those boundaries been crossed? When is it unethical to ask a nurse to continue to see an abusive, a verbally abusive, a sexually abusive patient? And I imagine those things– You know, it’s interesting. When I was working full-time as a hospitalist at Stanford, we didn’t see it that much. It seems to be very rampant in the community.
– Yeah, yeah.
– Really, really. Especially in emergency departments, you know, you’re seeing very safely. You mentioned EMTALA, too. What are our obligations? Our legal and ethical obligations around this. By the way, can you help me? This is something, Z-pack, that always comes up in my mind. The difference between ethics and morals.
– You’re asking the hard questions.
– I like the hard questions. I got smart people, I’m gonna take advantage of it. Other people will answer this question differently and possibly better, but I think morality. So there’s morals and there’s morality, right? To some degree morals are sometimes considered to be equivalent with values and values can sometimes be driven by societal morals and values, by religious or spiritual morals and values. You know, 10 commandments, the things you shouldn’t do. Sometimes they’re driven by–
– Thou shalt not get just one Little Caesar’s piece of pizza.
– There must be two.
– There are rules.
– There are rules, this isn’t ‘Nam.
– There are also morals that people share and that people disagree on even in a fairly free and diverse society under ideal circumstances which you can argue about. Whether that’s where we are right now or not. But I think ethics is sort of, what I think of as a system of thinking about and framing questions, and using a variety of tools, including morals to inform what you think the right thing should be.
– So, they’re really more rules, and they’re informed by morals. And again, I’m man-splaining this because I’m trying to understand it.
– No, that’s good.
– But, yeah, so it’s more of a code?
– It can be a code but it’s also a process. It’s a framework and a process. So part of that could be, professional societies have ethics guidelines, right? I mean, almost every medical professional society has some form of ethics guidelines that they create for their profession. And there are things that are common across all of those for nurses, and social workers, and different kinds of physicians and so forth. And then there are things that are different.
– And I think the things that are the same are maybe the most shared values. And the things that are the same in our professional ethics societies, or our professional ethics guidelines in the US might not be the same in other parts of the world, right? And they aren’t, about disclosure, about informed consent, about all sorts of things, about paternalism. All that can vary. So I think of ethics as sort of a system of sort of processing and explaining and helping people navigate what our professional obligations are and trying, again, to balance benefits and harms, and doing good and trying not to do harm.
– Trying not to do harm.
– In context of the broader social context.
– Related to that, so, it’s a requirement, maybe it’s an ethical thing to do informed consent. Is our informed consent system, as it currently stands, broken and useless? Or is it perfect?
– It’s broken, I don’t know that it’s useless. Because I think– I was at a meeting the other day where people were talking about, what’s the point in asking people about– this wasn’t someone at Stanford, but what’s the point of asking people for informed consent about the use of their samples when once samples are de-identified they get broadly shared regardless of what you’ve said about them, which is a whole other episode topic. My response to that was at that the process of informed consent, even if it’s flawed, is still very important. Both to the patient or the research participant, and to the provider or the researcher, and to the institution and to society. This idea that you have to ask permission I think is really important. And the idea that you have to have enough information to make an informed choice. But the reality is we do it badly.
– We do it badly, yeah.
– No one remembers anything they’re told or that they sign. I sign these for myself and for my kids.
– It’s like in Apple’s terms and conditions. You’re like, ‘Accept’.
– Accept, yeah. And I think, then people are like, ‘Wait a minute. I didn’t realize I was signing on to do that.
– Wait a minute, yeah, I have to form a human centipede as part of using my iPhone?
– You’re taking what out? I have to stay in this hospital how long?
– So I think it’s a very fine– I think again we have to move more towards a communication model that makes informed consent part of communication. But I do think that there’s some function to a formality. I think we have to innovate the way we do it so that people can consume the information in a way that makes it more meaningful to them. But we’re not there yet.
– Makes a lot of sense. Now, one of the interesting things that you work on as a personal passion and also a professional passion is disabilities.
– Mhm, that’s right.
– And the ethics around, how do we take care of people with disabilities? How does that care actually influence the care of so-called well and healthy, normally-abled, I don’t know what the term is.
– Yeah, no that’s–
– By the way, I’ve been accused occasionally, because, you’ve gotta undertstand, I’m a conditioned glob of goo that walks around just spewing stuff. Especially when we’re live. I’ll just be like, And I’ve been accused of saying words and things that are construed as ableist, and so I would love to learn more about your work with disabilities and the ethics around that. And why did it start? Like, it’s a personal thing?
– Yeah, it is. Well, so, I actually did some research In my early part of grad school on the genetics of autism. It wasn’t the main part of my–
– Genetics and autism?
– Genetics of autism, yeah.
– But isn’t it all just vaccines? There’s no genetic component, right?
– Yeah, you’ve done a couple shows on that.
– At least.
– Anyway, no, it was interesting, in was back in the day. It was one of, if not the largest, family based studies of autism back in the day. So anyway, I had some exposure to autism through that work, but it was as a student and I was in a lab, and I wasn’t really interacting. I was doing lab-based stuff, not actually interacting with patients and families. In one of those great ironies of life, several years later, when I had kids, my oldest son was diagnosed with autism when he was about three years old. So I sort of have, both then and later, some professional connections to thinking about autism in particular, but disabilities. But then I also have the personal experience of being a parent of a child with a disability. And then I have the sort of ethics, how I talked about wearing multiple hats. I also have this ethics hat where I interact with parents of children, and children and adolescents themselves, and increasingly adults with all sorts of disabilities. Developmental disabilities, physical disabilities, intellectual disabilities, all kinds of things. And I think my kind of lenses are different, if that’s the right metaphor, for thinking about how disability is perceived by healthcare and how people with disabilities and family members with disabilities interact with the healthcare system. And I keep feeling like, you know, what’s it called when you’re doing the ophthalmological exam and they change the lenses so you can suddenly see more clearly?
– I call this the ‘Number one, or number two?’
– And then you’re like ‘I don’t know which one is better!’ But sometimes you get the change and you’re like, ‘Oh my God, that’s so much clearer.’ I feel like that’s what’s happening with me and thinking about healthcare and disability and continuing to happen. Something will happen and I’ll see the issues totally differently. Because of my personal experience and my professional experience I’ve gotten really interested in the way our health care enterprise does and doesn’t meet the needs of people with disabilities.
– And this is nuanced, it’s not like, ‘Do we have a handicap ramp?’ I’m just gonna reframe this. Come closer, my darling. I know I’m creepy.
– No, you’re not creepy. I’m just starstruck.
– No, no, no! It’s funny, every time I do an interview it starts out, we’re in tightened frame. Then I start talking and the guest starts to back up because I am creepy AF.
– No, not creepy. We just need the two straws in a drink. [Laughter] And then we’ll be close enough, right?
– Like a Jimmy Buffet sort of scenario, exactly.
– I will try to stay.
– We’ve got our little microphone here, we’re a pro operation. When I’m on the road, I don’t have Tom and Logan to help me.
– Hi, Tom and Logan.
– Tom would show up behind us and just kind of like, hey! So it’s not just ramps and wheelchair accessible stuff. You’re talking about your experience walking into a crowded waiting room, being forced to wait with a child for whom that much sensory overload, that much stimulation, is not necessarily the best fit for how it’s set up.
– Yeah, and that’s partly my personal experience is that, and I’ve told this story a couple of times even recently. I took my son to a healthcare visit with a specialist and everyone in your audience probably will have had this. It’s a room that’s really crowded full of kids who don’t wanna be there, and they’re screaming, and there’s a TV playing, like, really loud cartoons. The cartoon is so loud, it’s so loud. No one can hear this cartoon, it’s just noise. I feel bad for the people who work there. I actually said to the receptionist while I was there, I was like, “How do you manage that?” And she was like, “I don’t hear it anymore.”
– I don’t even hear it anymore! It’s like Teen Titans is going all, “The night begins to shine.” Believe me, I watch this cartoon because of my kids. So, loud cartoons.
– Loud cartoons and then waits because all clinical settings like that have waits, and indeterminate waits, especially for some specialties. So recently with my son, we were waiting for an hour and 45 minutes.
– That’s nothin’.
– It is nothing, but we were told there was some wait, and he took one look, and he’s a good self-advocate, and he took one look at this room and was like, “No way, I am not sitting there.” I knew that might happen so I’d arranged for my husband to take off work, he took him for a walk, I said I’d call them when it was time to come in. So we, because of our knowledge and resources, were able to sort of strategize around that. But most people can’t do that. And it’s fair, and what happens is the kid doesn’t get into the visit, or they get into the visit and they’re already more anxious and escalated. They can’t communicate about what’s bringing them there. Communication is so important in the assessment, in the exam. Again, it’s not just for kids, it’s for adults too. Adults with disabilities have, particularly intellectual and developmental disabilities, have trouble communicating, and you need them to tell you what hurts, and you need them to tell you why they don’t feel good. If they’ve already had this very amplifying experience. So the waiting room is just one example.
– We never think about these things.
– The thing is, it’s true for everyone. This is the whole sort of universal design idea. That if you fix things, or you improve things for people with disabilities, you actually improve things for everybody. Apple’s kind of done that with thinking about how some of their technology that helps people with disabilities actually improves their technology for other people. Other tech companies have done that.
– With their accessibility tab on there, in the settings. To make things big, zoom, yeah.
– Exactly, and so I think we can also make, in medicine, about how we can use technology but also how we can train people and give them easy to use tools. We’re not gonna send everybody back to week long trainings on how to do this. So how are we gonna use what we have? And how can we innovate where we are to address that? Now what do you have there?
– So, what I have here, and I can’t open them because it’ll actually start using it for audio. These are Apple AirPods. You pull them out and you stick them in.
– Oh, okay I didn’t recognize the case, sorry.
– So what Apple’s been doing is, they are setting it up so you can use your iPhone, which I’m recording on right now, with these AirPods, and use the microphone on the iPhone to amplify. So it’s almost like an impromptu hearing aid in a crowded situation, maybe.
– Yeah, universal design.
– And it’s directional because the iPhone is designed to pick up the person in front of you, so this is a great example of design within the reach of, that helps everybody, but particularly people that are hearing disabled.
– When it helps with outcomes, it helps with traditional healthcare outcomes, like morbidity and mortality, and also satisfaction.
– Satisfaction for sure, which is the only outcome we care about press gaining.
– I got a survey after that thing that was like, ‘Okay.’
– You filled it out.
– And I got a call afterwards, so–
– When you get a call, yeah.
– So here’s my number, you can call me. But I said, when I talked to the person, “Hey, I’m on your side here.” Like, it’s nobody’s fault, nobody’s doing this intentionally. Everybody’s doing their best, but how can we think creatively about how we can do better and how we can create more opportunities for advocacy and self advocacy for people whether it’s in pediatrics or in the adult setting. So the other way, if I can tell you another story that’s good, so my family and my son have gotten really involved in Special Olympics
– And two weeks ago we were in Seattle for the Special Olympics USA Games 2018, and I had never been to that or anything like that before and I have to say, the whole thing was an amazing experience. I’ll just give a shout-out, actually. ESPN did a really nice one hour thing about it.
– Oh, wow, yeah.
– But one of the things that they did that’s really relevant to this discussion, and your audience, is they have increasingly in the last couple of years started a healthy athletes program. Partly because they recognize that most Special Olympics athletes and most people with disabilities of the kind that are included in the Special Olympics have tremendous unmet healthcare needs, tremendous.
– Really, you would think they’re in the Special Olympics, they’re-
– No, and that’s exactly right. By being in the Special Olympics they already are a specialized subset of people with disabilities who’ve gotten themselves there, who’ve had some sort of physical screening exam to be able to participate, so you’re right, but still it’s tremendous. And so they do this on the state level but the national level, for the first time, they had a whole clinic in the University of Washington opened up. A whole floor, with all these stations for different kinds of healthcare things for all the athletes to go through. They had it open for the longest they’ve ever had it open for six days of the whole session. I found out, I got some data, some preliminary data about it. They saw a total of over 7,000 athletes while they were there, of all ages. They were looking at a bunch of different areas, they were looking at dental. Dental health.
– Which is a big deal, yeah, because of the oral-systemic link and everything, yeah.
– Yeah, vision, hearing, general health promotion, BMI, that kind of thing, and healthy eating and habits. And then podiatry, feet. And one of the incentives to get people to do this was they partnered with Brookes, and they actually were giving free Brookes shoes of the correct size to anyone who went through a certain number of stations at this screening. So, they were awesome shoes. I bought some and they were awesome.
– [In An Indian Accent] Did they have closed toes? Because I’m telling you–
– Yes they did have closed toes.
– Chapels don’t even have toes.
– Your father would be–
– He’d be happy, yeah.
– Slightly less than the Rockports but still pretty good. So the interesting thing I wanna share about that, and they were also giving out free glasses on the spot with the correct prescription. And the director of it was telling me that in another healthy athletes event she was at, she met a kid who was getting glasses, and apparently previously had glasses, and she said, “Well, what happened to your glasses?” And he said, “Oh, well, I have these bullies at school and they broke my glasses, and my mom can’t afford glasses so we had to wait till the next Special Olympics event for me to get glasses.
– Oh my gosh!
– So, anyway, just a summary of the data, and Dave Lenox, who’s head of Washington Special Olympics, helped me out with this. Over 50 percent of them had the wrong shoe size. Like, wrong shoe size. Eight of them had sort of urgent referrals as a result of that from feet injuries from having the wrong shoe size.
– Oh, wow.
– So this is basic. They even have trouble connecting with the right people to explain that their feet hurt because they have the wrong shoes. The other interesting things were, 23 percent didn’t pass the hearing exam. Over 46 percent got glasses and had the wrong– needed a new prescription. And then this was the one that really got me, were the number of dental issues. There were 64, about five percent of them who had urgent referral for dental problems. So they’re healthy enough to get to the games, they’re healthy enough to get through the health screenings.
– And they need a root canal, stat.
– I mean, yeah, they’re in pain and potential health consequences from having dental of broader health, right? And so, it was shocking, I mean, many more of them had, I think, 17 percent or about had untreated tooth decay. So really serious health problems. And they’re waiting, they had a dental van where they were doing procedures and there was a wait. People were waiting there for hours to get these free assessments.
– So lemme… [Blubbering] So, how on Earth is this population– It’s almost like an impoverished homeless population in terms of the access, the dental issues, the shoe issues, the hearing and vision issues. It’s like we’re dealing with the homeless clinic at UCSF.
– Yeah, I mean, I don’t know those numbers but it does seem to me like that. And these are people who probably have a doctor. And so why is it, and I was actually asking some of my colleagues, why is that? And I think it’s a couple of things. Some of it is access. Sometimes it’s just literally hard to get an appointment if you have kinds of disabilities where you have to navigate the healthcare system. So I think that’s part of it. I think a lot of it, which I think is one of the key areas to target, and my colleague Dave Lenox was saying this too, is providers opening their minds to thinking about how the encounter goes. And thinking about how they communicate with people with disabilities. I think, especially with intellectual and developmental disabilities, providers, especially in pediatrics, but even in adult care, frequently talk to the family member when the person is right there.
– Right, right, and they’re sitting right there.
– I got five minutes, what’s going on? I’m gonna talk to you, Dad, you, Brother, not the patient. And there are reasons for that, but that misses an opportunity to engage the patient in a way that the patient can engage back with you. It’s also based on, I know you were talking about ableism. I think we all, I mean it’s implicit bias. And the data on implicit bias, I mean, we’re all ableist. And just saying we don’t wanna be isn’t enough.
– Isn’t enough, yeah, exactly.
– So how do we create systems so we don’t have to think about whether we’re being ableist.
– I wanna commend you for saying that. That, to me, is a crucial thing. Don’t blame people for their implicit bias. Blame us if we don’t do something, systemically, to overcome it.
– Well, and if everything becomes a workaround that works differently, then you don’t have to think about it.
– Right, right.
– It just happens, whether it’s technology or something else. So how do we ask questions? How do we get information in advance? Can we do exchange of information better in advance of the visit to get what the question is in advance.
– Fill out the EHR in advance.
– Yeah, or can we have other kinds of tools that will help do that. And then the other thing that Dave Lenox at Special Olympics Washington was saying is, for all the healthy athletes programs, this occurs in every state, and I know you have viewers from every state.
– And Puerto Rico, which isn’t a state.
– Should be a state.
– But it should be.
– And Special Olympics also does this globally as well. But it’s this idea that they have to go somewhere. So if they do a screening, and they go, ‘Okay, you’ve got high blood pressure. You need a referral for high blood pressure.’ They do two things. First of all, they create a report that summarizes what the problem is. So the athlete or the athlete’s family can go with the athlete and bring it in, and not have to do, necessarily, they may do their own workup anyway, but like, we’re here for the high blood pressure, you know? There’s a problem with this. And you don’t have to have the communication intro that can be hard about, ‘Doc, I’m here for X’, right? Then you can go from with what you need to do, and it’s up to the doctor. And then secondly, they have a list of local referrals, people to refer to. So, you need a physical therapist to help you with your knee pain. And you live in Redwood city. Here’s out list of providers who have told Special Olympics that they are open to taking people with intellectual and developmental disabilities. We don’t know for sure if they’ve had training, but they have come to us and said, ‘We are here for referrals in this population.’ So, I think one of the other take-homes to your audience is, I think to the degree providers can get themselves and their institutions to be added to this referral list just by calling their Special Olympics office in their region, that will increase. They will increasingly have more trainings and videos and things for people who do that work. But it will also increase opportunities for that patient population to get access to care.
– And these are not just children, these are adults.
– I would say it’s mostly adults. There are kids who do Special Olympics but I think in this population they were largely adults. And I walked away, I mean, I was so excited to go see this, I was fascinated, I loved the tour, I learned so much, I met a lot of athletes and talked to them about this. And I walked away from this really in tears. Because I knew we were scratching the surface if these were the healthy people who got in this population. The need is so much worse than these numbers reflect, and so, you know, we were also talking, my colleague and I, about what can’t we fix. We probably can’t make the visit longer. We can’t make the insurance system more incentivized to do it differently. These are big problems that are not gonna get fixed. But what are the low-hanging fruit, what are the innovative things, how can we encourage all of the clinicians and health care professionals who do interact with this population to do it differently. That’s where I’m really interested in thinking about change.
– So you had a couple calls to action, One is, reach out to your local Special Olympics office, and see if you can get on their referral list, so that you can provide access to these kids. The second one would be maybe to rethink or reevaluate or retrain and how you approach even the intake of patients with disabilities. How do you make it– and it’s different for each patient, there’s no one size fits all. So maybe part of a system would be to figure out how to individualize the experience and I think one of the things I think I’ve heard you say before in talks is, you assume confidence. Assume or presume, sometimes people say it both ways. And I think that’s so important. That’s something I’ve learned as both a parent and a person involved in the healthcare enterprise, is, going back to the implicit bias, is we all see somebody with a visible or invisible, and we just discover it, disability and we make assumptions. I see this in healthcare all the time. Oh, this is a person with, there was just a story about this happening with someone with autism. Not here, but somewhere else, where something got put in the EHR about this person has autism, and therefore has mental retardation and doesn’t have accurate information about their symptoms. Which is, of course, not necessarily true. So there’s all sorts of assumptions, and then it gets in the medical record, and then it gets copied and pasted over and over again and populated, and then that’s that.
– Don’t make me rant about those EHRs.
– I think there are things we can do in EHRs to flag. This is this person’s preferred communication method, this is what their diagnosis actually is, so you should go look at this Smart Text about how, or questions you show. We could do things like that. That would probably help. But I think presuming competence is, talk to the person, ask them or person who’s with them, ‘How do you like to communicate?’ Say, ‘Hey, I want you to tell me what’s on your mind, not just what I’m asking you.’ Because you might not think to ask the right questions. And a person who has communication problems or anxiety problems or who may not bring up, ‘Oh yeah, by the way, I have this other health problem.’ They may leave without ever telling you because you didn’t ask them and you didn’t think they were there for that reason. So I think presuming competence is really a fundamental social justice issue that’s in healthcare and in our society. It’s part of what Special Olympics is calling, but it’s not just Special Olympics, is inclusion revolution. This idea that, and I’m not gonna be the first person to say that we don’t just need this in disabilities, we need this in other areas too. But in disabilities, there still, for far too long, has been segregation in our society in treating people with disabilities, whether it’s physical or not, differently and making them separate and not having them have full access to a lot of the benefits and resources that many of us take for granted. How can we change our systems and change our approaches to actually promote inclusion? Schools, healthcare, political process, just our local parks. My son’s involved in this wonderful park here in Palo Alto which is an expanding area called Magical Bridge which is building inclusive parks for people with all kinds of disabilities. So, how can we think about small ways as well as big ways that we can do that in our daily lives.
– I wanna reiterate something for the audience. If you guys think this is not a problem, that we are inclusive, that we have the ramps, and we have the requirement for certain widths, wheelchairs, if you think that’s enough, the Special Olympics data says otherwise. These adults and children who are probably at the end of the bell curve where they’re getting the most attention just in that they are athletes and their competing are having huge problems, dental, vision, health, podiatry that are unaddressed. Which means we as a system have failed to include them.
– It’s no different than segregating racial populations and treating one as if it’s inferior. Putting up barriers to access. And that can be unintentional. It can be an implicit bias. Which we have to recognize and devise systems to overcome.
– Unintentional, and the other piece of it is, I think, that you’re talking about morals and ethics. I think there’s a moral argument for asserting the healthcare needs of people with disabilities and think about how we can do that. But I also think there’s an economic argument too.
– Tell me about that, yeah.
– If you wanna make an economic argument. I mean, yeah, I think, and this is not just true for the population of people with disabilities, but the costs of not serving these needs and not doing preventative health measures and not treating things before they get really bad. We see people in the ICU who have severe dental infections plus a bunch of other things So there are significant healthcare costs to our whole system. There are significant impacts on our system. I think providers without guidance and coaching don’t know how to best serve these patients. I think that also affects the day-to-day working life of providers who are just struggling to manage their caseload, what they have to do that day. So, I think there are impacts beyond just why it’s important morally and ethically to help people with disabilities and I think it affects all of us in other ways too. And also, the other argument is, some people would argue that all of us will be disabled in some way at some point in our lives, or a family member, and so it’s actually us as well.
– I can’t do math. You brought up a thing– In the ICU, the biggest fear we would always have as Docs is finding a dental abcess in a Medicaid patient. Because now it’s an ordeal to find a dentist. No one’s gonna come to the hospital. They’re only do extractions, if that. And here’s a potential source of infection, of Sepsis, of inflammation, of stress, all these other things. So, yes to everything you’re saying. I think it’s really cool that as a bioethicist, you’ve taken this on as a sort of a sub-specialty.
– I’m starting to, yeah. It’s an area I’m trying to get more involved in. So I love that you invited me to do this because it’s something that I’m really passionate about. I wanted to do more and I’m interested to hear what people say, too.
– You’re gonna get a lot of comments.
– But the other thing I’ll say is that I think the other piece of it is about values and quality of life. So the other ableist thing you were talking about, presumed competence, is, I think, you don’t know– and I’ve learned this as a parent and as a healthcare professional, if you don’t know people with disabilities, and you just know, oh, my sister’s sister’s friend or the neighbor down the street or the guy at the grocery store that I see or whatever, if you don’t really know someone with a disability you tend to have a bunch of assumptions about what brings quality of life and value to the person with the disability. One of the interesting things about Special Olympics is, I think most people have heard of Special Olympics but they don’t actually really know much about it. I certainly was one of those people until not that long ago, is that people with all degrees of developmental disability, intellectual disability in particular, but physical disability as well. Their perception and value of life isn’t necessarily the same as someone who doesn’t have that. It’s not true that they don’t have any perception of value, that they don’t have things that are important to them, that they don’t have things that they do that they value that are important to them. Being able, for example, to go to their Special Olympics softball practice and games, may be one of the things that gives them the most joy, and they in turn help them with work that they do, a day program they do or something else that they’re doing in their lives that has value. And when they get so sick that they can’t do that with healthcare issues that maybe aren’t because of their primary underlying diagnosis, that may be related to their disability, then they can’t do those things. So, again, to me, that’s pretty fundamental. If you and I couldn’t do the things we do in our daily lives, that would be a pretty big deal to us.
– It’s a question of beneficence. Are we doing something to help reduce– to bring them happiness or to reduce suffering. And that related to something I was gonna ask you about. This sort of morality around this quality of life for these people, because we assume, like you said, the Downs syndrome patient who’s in a home, who may be a little older, and has contractions and all that, that they’re not understanding what you’re saying, that they’re not feeling something. Joy, hope, fear, sadness. That is the deepest kind of ableist bias. And honestly, you know, look. When you’re resident training and you get that page from the ER, ‘Yeah, we have somebody from X home’, you already know, okay, this is a home that takes care of people with intellectual disabilities, physical disabilities, whether it’s Downs syndrome, whether it’s Cerebral Palsy, whatever it is. And you just go, ‘Oh, how am I gonna talk this person?’
– Yeah maybe you’ve never done it before if you’re a resident you may never have had that.
– Mostly not, mostly not. And I remember being in that situation and then I did a show that I’ll send to you with a Stanford radiologist named Pete Polous.
– Oh, I’ve seen that show.
– Oh, you’ve seen it!
– She’s a fan, I love it.
– Kind of a fan. You’re the closest thing to sort of a–
– I know, I know. I never get to interview fans. It’s always people who hate me.
– It’s a great show about his experience.
– About his experience. We didn’t really say what it was.
– I mean, he went from a UCSF GI fellow, had a biking accident in San Francisco, ends up with pretty much, he’s a partial quad, more or less, and now finds himself in situations where he’s misunderstood and misjudged. Now he’s practicing radiologist, a colleague of my wife, we have dinner with him. But the thing about him is, he went from this world of probably being fairly ableist because he was a pretty– My buddy was buddies with him before, a pretty different person before and after. And now what is interesting is, he’ll roll around on his Segway because that’s how he’s able to get around. And people will give him crap.
– I’ve heard, he said that on your show.
– And you’re just like, okay, let’s not presume the worst about people.
– And also, ask people. That’s part of presuming competence which, again, goes for every patient whether they have disabilities or not. And your coworkers too, is like, so what’s important to you? Why is this important to you? How can I help you achieve that goal? And that your values also can change. All of us, our values, some of our values are constant, but some of our values change. His perspective changed. My perspective has changed as a parent. And as someone who then sees this healthy athlete in the Special Olympics, our perspectives are evolving. And again, with a person with disabilities, assuming they have no input and no sense of their own values is false in almost every situation. I mean, somebody in your comments may point out that there are people who really cannot interact in any way, shape or form possible and there’s a whole separate show we could do about that. But the vast majority of people with any kind of disability do actually have opinions and values and things about their life that they value that they would like to communicate with you. It’s important to figure out ways to ask that.
– So my partial call to action is, let’s keep it in our minds when we’re dealing with anybody, any human being, but in particular those who have the label of disability or whatever it is, and think about, now so many of our fans have children with autism. And you see it in the comments. And these are– Our fans are science driven people, so they want to make things better in a systemic level. They don’t wanna chase false stuff like vaccines and all that. They wanna figure out, okay, there’s one thing about what causes autism. There’s another thing about, how can we maximize their life experience and their contributions, and also how hard it is to parent.
– I don’t think my son would mind my sharing that as my own child with autism has gotten older I have also thought about, and tried to learn more about what it means to be someone becoming an adult with autism too. And what it means to become– I guess I’ve become more aware of my own, I don’t wanna say bias, in necessarily a bad way, but I am an able bodied person, and I’ve got plenty of things in my medical record. By most people’s definitions I don’t qualify as physically or intellectually disabled, or developmentally disabled, so I get to talk about this as his mom, and I get to talk about this as a healthcare provider, but we need to talk to people who have these conditions and involve them. Not only in our own care, but in how we think about the healthcare system should do. And the disability rights movement sometimes gets criticized, but I think one of the messages that they bring that I really have learned to endorse is ‘Nothing about us without us.’ And this idea that we don’t– I don’t know what it’s like to be you, you don’t know what it’s like to be me. In healthcare you have to make assumptions to take care of people, and you have to do the best you can. So, I’m not saying you never make assumptions, or you never group people or classify. But have curiosity about the perspectives of people whose lives are different than yours, and that you may not know what that is.
– I wanna ask you, that’s beautiful advice for anybody. And it comes highly– It’s more poignant coming from you because you, again,are walking that walk.
– Mhm, I’m trying to.
– And here’s a question, so, the R word.
– Mmm, yes, yes, yes.
– Retarded. That has recently really been pulled into the sort of realm of the F word regarding homosexuality, you know, a bunch of things. So what are your thoughts regarding this word and the stigma around this word, and the use by kids and adults?
– Yeah, well, it’s interesting because when I grew up, and when you grew up, I think we’re about the same age, we can talk about that later.
– I think so, we may be a cohort. Scooby Doo was a thing?
– Yeah, Scooby Doo was a thing. But I think, certainly then–
– Dukes of Hazard?
– Yes, Dukes of Hazard, absolutely. Although that was more my husband than me.
– Greatest American Hero?
– Yes, Greatest American Hero. Oh God, we were singing that song the other day.
-Believe it or not, I’m walking on air. Alright, sorry.
– My children were mortified I was doing it in a public place. So, anyway– But I think the R word and the F word were cast around like they were nothing but meant to be very stigmatizing and hurtful all the things that kids do and say to each other. And I think the adults in our cohort who grew uo in that time still do that, and still even make offhanded comments. They sometimes don’t mean it badly. There’s also concerns that we do this with mental illness, but that’s a different topic.
– Oh, we do that, definitely. The word ‘crazy’ is used a lot.
– Yeah, crazy, insane. But I think for the R word in particular, the R word is incredibly damaging. I think one of the things, and Special Olympics has taken a lead in this as well, trying to spread the word to end the word. So they’ve started trying to do programs in schools to try to sort of make people understand the power of that word and why it’s hurtful. So not just, ‘You’re a terrible person because you used that word.’ But, like, you’ve heard people use that word so you don’t understand why it’s hurtful. Let us explain to you. There have been a bunch of stories even in the recent news, about entertainers using that word, and why that’s– and movies and other kinds of things and why that’s problematic. I think the N word is another word which has become appropriately, completely unacceptable to use.
– Right, right. Papa John’s.
– Yeah, maybe. Yeah, Papa John’s. Maybe decades ago, we wouldn’t have had the same reaction to people using it. I think the challenge for healthcare providers is that mental retardation was a medical term and I suspect it was even part of the DSM at one point. And so they’re sort of like, ‘I don’t mean it that way, I’m using it in a clinical way.’ You know what I mean?
– Right, right.
– And especially among older clinicians. So I am very strongly supportive of efforts to spread the word to end the word and to get people to stop using it. But it is an uphill battle, even in my children’s school, people still use it.
– I tell you, some folks on my team use it.
– And the thing is, because in our writing space we regress to whatever childish behavior we do.
– Well, and you’re on the boundary of what, sort of, people are comfortable with. Like, we use things we learned when we were kids and even in training and stuff. So I think it’s hard to break those habits. I had a friend on Facebook once who I adored and who I think is wonderful, who was talking about her cat and said something like, ‘Yeah, my cat’s riding the short bus.’
– Oh yeah, mhm.
– And I messaged her privately, and I was like, ‘So, here’s the thing. I know you didn’t mean it that way, but that means something different than you might think it means. So, maybe you didn’t know that, and maybe that’s not the choice of words that you wanna choose, knowing that you know that.’ So it wasn’t like ‘You’re a bad person, I hate you, you should apologize, I’m gonna publicly shame you.’ It was, ‘Hey, that means something different than when we were kids.’
– So, I’m glad you brought up that phrase, ‘short bus’. Because I was doing a medamoji piece, where I have my monkey primary care guy.
– I know the monkey, yes.
– And he was attacking, who was he attacking? Anthony Mercola, who’s a kinda quacky vaccines cause autism, all kinds of terrible things. So, he was basically saying, well this guy is so dumb. He is so dumb, he’s smarter than any dolphin in the ocean. No, he’s dumber than the smartest dolphin in the ocean. He was just going through this, like, spur of consciousness, and I said, ‘Even the dolphin that rode the short bus, he is less smart than that dolphin.’ Just an offhand thing.
– I didn’t see that one.
– Yeah, because you would have commented.
– I would have probably commented.
– And it would have been appropriate because then what happened, we put it out and I got maybe five or six comments, a bunch of people said, ‘Oh, that’s hilarious.’ And then five or six comments which were like, ‘You know the short bus thing?’ And some of them were like, ‘You’re a bad person for saying this.’ And some of them were what you said, which is, ‘Here’s what that means to people who, XYZ.’ And I was so uncomfortable after that, and I was like,
– Yeah, because you’re a nice person, right?
– Because then when it’s explained, you know, it never occurred to me, and now it makes perfect sense that it could be a hurtful word to a population of people. But the thing is, I can’t edit it out. Facebook doesn’t let you remove it. And the thing was already, like, so popular. And so what I had to do was, I just had to do a show where I explain myself. And I said, you know, I didn’t realize that this word had this context, and this and this, and this.
– How many people learned something from you having that conversation? I mean, that’s better than you just erasing the show, or, you know, I mean editing it.
– That was the hope. And the thing is, again, like, it’s hard. I find apologizing for those things is a little awkward because it wasn’t done with intent. Rather, I’ll say, ‘Okay, now, what I learned from this is this, that this is harmful, so I’m not gonna do it anymore, and here’s why.’ So those things will happen and we all try to learn.
– That’s how we make it better is like, by talking about it, right? I mean, I think I wanna live in a society where we can have those conversations and maybe people won’t always agree, but you’ll hear someone else’s perspective.
– You wanna hear something interesting? I rode a short bus as a child because I was in a private school and they had a special short bus for us.
– That’s the thing, a short bus isn’t, by nature, created for special education. It’s actually a function of the Long system of the Individualized Education Act, or IDA in the United States, about why people have to go to their home schools and they have to move people with transit. I mean there’s actually a history.
– I had no idea, wow.
– But they can use a short bus for anybody. It’s associated with stigma. And it goes back to other public culture, popular culture representations of disability that are sort of, I don’t mean to be a jerk in a bad way, but are sort of instinctual, without reflection. Like, oh, I didn’t realize that that person would react that way to my using that word or saying that thing. I think the R word is moving more towards away. The short bus is maybe still more in the– People haven’t even though about it. The R word, I think is starting. But I think it’s highly variable. And again, kids. They don’t– How do we explain it to kids, because that’s when they learn it.
– There’s comedians that have done bits on the R word, yeah.
– Yes, there’s a whole thing with Netflix right now.
– Oh, yeah.
– That’s about that.
– Well, that’s that subject of another discussion. Boy, this is– I’ve learned a lot!
– Yeah, I’ve had so much fun! And I’m with, like, you who I’ve admired for a long time.
– Stanford professor.
– I’m a bit of a fan.
– Stanford professor.
– See, Dad? I told you! The smart people like us too!
– Yeah, hi Z-Dog’s dad and mom. [Laughing] He’s awesome.
– Now I can’t say short bus, so I won’t. But I’m just telling you, the bus he rode was of normal length.
– Normal length with closed toed shoes.
– Exactly, exactly.
– It’s been fun.
– So, Doctor Holly Tabor, what a pleasure. Associate professor of medicine at Stanford, chair of the Biomedical Ethics Department?
– No, you just promoted me. Associate director of the Stanford Center for Biomedical Ethics.
– That’s what I meant to say. But you know, I don’t fire on all cylinders after– So, guys, here’s the thing. If you wanna share this with other people, share the video, spread this idea about changing access for people with disabilities, and this will also be a podcast, which will be more easily chewed on if you’re riding on a long commute, than an hour long video. So please feel free to share that too. We’re on iTunes at Incident Report. And on SoundCloud and Stitcher and all the other nonsense.
– I know.
– Are you not on anything?
– No. Well, I’m not on SnapChat, cause that’s just dumb. Yeah. That’s just really not okay. That is a– Yes. So, on that note, guys, thank you.
– Thank you!
– And thank you Doctor Tabor.
– It was so much fun.
– And we out, peace!