Interview: 4 ways to design a disability-friendly future with BJ Miller

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2:31Hi, everyone. It's Madhupa here. Today, we're sharing an episode of a podcast we think you'll love. It's been handpicked by the TED staff, and we think that as TED business listeners, you'll come away with a fresh idea and a totally new perspective. Enjoy and head to the link in the description for more. This is TED Health, a podcast from TED, and I'm your host, Dr. Shoshana Ungerleiter. Today, I want to bridge two of my worlds with you by sharing an episode from my own podcast, Before We Go, that I think you're really going to connect with. If you listen to season one of Before We Go, you might remember that it followed a very personal story, my own.

3:14Following my dad's cancer and the surprising diagnosis that changed my own health and the unexpected paths that I took to find meaning and purpose in all of it. For season two, I broadened the scope a little. I've put together conversations with people from all walks of life, exploring how we live alongside mortality in our bodies, our relationships, and our identities. And one of those conversations is with someone many TED listeners may already know and love, my dear friend, former TED speaker and palliative care physician, Dr. B.J. Miller. When B.J. was a college student, his life changed forever.

3:50One night he climbed on top of a parked train and was hit with 11 ,000 volts of electricity. He survived, but he lost three limbs. He spent his life adjusting to living in a body that's visibly different, while embracing the new paths that his disability opened up for him, including his future career in palliative care. In our interview, BJ shares why he thinks of disability as a construct, something society defines but doesn't get to define for us. That episode of Before We Go is coming up next. And then stick around for a 2022 TED Talk with disability inclusion advocate Megan Hasseen, who offers four concrete things all of us can do to create a more welcoming world for everyone, not as charity, but as justice.

4:36But before we dive in, a quick break to hear from our sponsors.

4:48So tell me about the accident. What do you remember?

4:53BJ Miller: So I don't remember anything. Almost no memory of the evening, which is very common with a traumatic injury. This is my good friend, Dr. B.J. Miller. And for now, I just want you to hear the story of what happened to him in 1990 when he was a 19-year-old student at Princeton. So sophomore year, early sophomore year, it was just after Thanksgiving break. We'd just gotten back to campus. It was, I guess, I got back a Sunday. I remember we watched the movie Goodfellas in the theater. It was in the theater's end. That was the night we got back. And then Monday night, I remember I was heading to the computer lab to print out a paper, but I ran into two buddies of mine, and we decided to go have a beer.

5:38BJ Miller: It wasn't a crazy night. We went out onto the end of the town a little bit and then we decided to go get a sandwich. Pretty innocuous stuff. And at Princeton campus, there's a commuter train called the Dinky of all things. And it's on the way to the Wawa market to get a sandwich. And we decided to climb it like you would, you know, it's just parked. We didn't even think we were doing something that crazy.

6:06BJ Miller: I grew up in the Midwest. We had diesel trains. This is an electric train where the wires run overhead. So I just, I happened to be the first one up. And when I stood up, I got close enough to what's called the pantograph, which is the metal thing that connects the train itself to the electric wires. I had a metal watch on my left wrist and the electricity arc to the watch. And that was that big explosion. and blah, blah, blah.

6:35And have you ever had conversations with your friends that were there with you about what they saw and experienced?

6:41BJ Miller: Oh, yeah. There was a foursome of us and a guy named Tommy, too. But Tommy was, I think he was studying that night more dutifully. So it was just Pete and Jonathan and I. We've talked about it a lot. I mean, they've kind of helped me remember. Very quickly, they went into action. Pete, who's this enormous superhero of a guy, he looks like a comic book superhero. He's square jaws, huge shoulders. He's a beautiful soul. And he heroically gets up on top of the train. And Pete got up there and found me unresponsive. And it often happens with that much electricity, you'll stun the heart. But then you sort of auto-defibrillate, which is what happened to me.

7:23BJ Miller: So I was sort of probably, you know, in some fibrillation. and then came to and was just flailing wildly, which apparently common with electrical burns. And I was just punching Pete. I was just flinging around. And Pete was trying to hold me down so I didn't roll off the train and make everything worse, which was apparently not easy. And so he's holding me down. While Jonathan runs and calls 911, cops come. We went to the local hospital to do the immediate emergency care, which is basically they just cut holes in your skin to let the heat out. And then they were putting me in a helicopter to go to the burn unit at St.

8:04BJ Miller: Barnabas. I have a vague memory of them loading me into the helicopter. And I was almost 6 '5". It was my native height. I just remember them awkwardly couldn't fit me in the helicopter. They were sort of funky conversation about how to get me in there. I vaguely remember that. BJ would stay in that burn unit for about two and a half months. to save his life surgeons amputated both of bj's legs below the knees and his left arm below the elbow the story of what happened that night is very traumatic um and yet i've heard you talk about it so many times and it doesn't seem to visibly upset you how do you feel when you're asked to tell that story you know it's sometimes it's a funny feeling shows i you know i have told the story so many times, you know?

8:53BJ Miller: So part of me is just sort of inured to it, but that doesn't do justice to what's happening here internally. What's happening for me, it's been 35 years, you know, early on, it would be emotional and hard for me to talk about, but that shifted pretty quickly. And then it became sort of like, it feels like talking about a movie I saw that I happened to be in because I don't really remember so much of that, that evening. I guess I'm almost kind of fascinated. Like, I can't believe that happened. I wonder what that felt like, you know? And so I guess my feeling, an overwhelming feeling is kind of curiosity.

9:30It also comes with all sorts of wonderful feelings by now because that experience really was a gateway, a portal to me learning so many things that became invaluable to me in my own arc of life. So many things happened because of that night. So it's no longer a story purely of trauma. It's many other things. So I was going to say it's a pleasure for me to talk about it. It's certainly not hard for me to talk about it all anymore. So you told me once disability is an interesting minority group because any of us can join at any time. How do you think that reality that anyone could become disabled affects the way society treats people with disabilities?

10:13BJ Miller: Well, I think it just ramps up the fear. A lot of folks deal with hidden disabilities, which is its own trick. But mine is very obvious. And so you walk around as this big projection screen. People just look at you and it's like a primal fear sets in oftentimes. The way the world handles disability, it's shifted in my 35 years. I don't feel so ghoulish in the world anymore. But early days, you'd either get this sort of weird kind of Christ-like thing. Like, oh, like you've got special powers in some weird way. It was like Jesus or Frankenstein. Or they treated you as like this monster that they were terrified of and visceral and like literally would cross to be on the other side of the street.

10:54Parents would see them pull their kids away from me. And, you know, you just you'd clear the sidewalk just walking down it sometimes. I mean, it's rarely I haven't had that experience in a long time, but that was much more normal back then. So, and answer your question, you look at my body and on some level, a person at some brainstem level knows that that could happen to them. you know it's not like you're going to become a different race or the other ways we divvy up people and minorities and majorities but on some level I think people understand that this could be them and that's terrifying so then you become the symbol of their fear

11:37there are so many things I could talk to BJ about he's one of the smartest and most thoughtful people that I know. But today I want to focus on how he came to live in a body that's visibly different and how those differences inform the way that he sees the world. I'm Dr. Shoshana Ungerleiter and this is Before We Go. This season we're in conversation with people from all walks of life exploring how we live alongside mortality. Today's episode, BJ Miller sees the world differently.

12:14I like to ask the people I interview to introduce themselves because sometimes their answers go into directions that I did not expect. BJ is a good example of that. So I clearly know the answer to this question, but I'm going to ask it anyway. Tell me who you are and what you do.

12:33BJ Miller: I am a physician, but I say physician in that way because I don't really practice medicine per se anymore. I do sort of related things. But anyway, I'm BJ Miller. I'm a palliative care and hospice physician and educator and writer of some kind, sort of wrote a book. But mostly I'm a palliative care doc. BJ's work in palliative care is how we became friends. We met in 2015 when I invited him to give a lecture at my hospital in San Francisco. And then in 2018, my father and I executive produced a Netflix documentary called Endgame. It followed terminally ill patients who were nearing the end of their lives and the people who cared for them.

13:19BJ was one of the palliative care doctors featured in that film. The scary part is the unknown and the lack of control. It could be terrible, but it could be wonderful. I will tell you, Teklen, from doing this work and being near people who are at the very, very end, everything I've ever seen would suggest that wherever we're going, whatever abyss we're meeting i don't know that it's so bad the film was nominated for an academy award and bj and i both traveled to los angeles for the ceremony i just want to tell you i was in la recently and drove past the mel's diner that we went to at like 2 a.m after that netflix

13:58BJ Miller: oscar party in 2019 do you remember that i do remember who we saw there uh yeah

14:07BJ Miller: What is his name? Ron Jeremy, right? The porn star? Yeah, the porn star. Yeah. That guy. We were like, what? Where are we right now? And then we saw the dragon mother, Emilia Clarke, from Game of Thrones. Yeah. At the next table. It's so L.A. Yeah, man. That was great and so fun. But boy, still think we should have won that one. But anyway, I know. Lovely. When BJ was featured in Endgame, he was running the Zen Hospice Project in San Francisco. But because of lack of funding, it closed its doors in the summer of 2018. BJ continued to be a practicing physician until the pandemic, when he and his business partner founded an online palliative care company called Metal Health.

14:53It focuses on the social, not the medical side of care.

14:57BJ Miller: I love medicine. It saved my life. There's much I love about medicine and there's much I really do not like about health care. And, you know, I only ever went into medicine to kind of learn a bag of tricks that would put me in front of people to have something to offer folks who were struggling as I had struggled myself. And I was only really genuinely interested in the existential and spiritual and social issues. The physiological sort of symptom management stuff was a piece of the puzzle that I enjoyed, I cared about. But for me, the existential stuff is the big, juicy stuff. And that's not a medical thing.

15:40BJ Miller: You know, dying, suffering, these are not purely medical pursuits by any stretch. And that brings us back around to BJ's disability and how it shapes how he looks at the world. And that story didn't actually begin that night on top of that train. It began long before in BJ's childhood. Tell me about your mom and what she taught you about living with a disability. So my mom, she's 82 now, Susan, but we'll call her mom. She and I have always been super close. I've always been a little bit of a mama's boy, happily and proudly so. So mom, she had polio when she was 18 months old, you know, in the pandemic back in the 40s.

16:27BJ Miller: And so for much of my childhood, she just wore a brace on her right leg and walked with crutches. It was incredibly strong and functional and could do just about anything. So she had a disability, but it wasn't very disabling. It didn't really hold her back. As she got into her 40s, the early 80s, I was maybe 10, 9, 10, 11 years old. post-polio syndrome revealed itself as this knock-on effect from the virus. So from the early 1980s, it's just been a long, slow, steady decline from a physical point of view. She's just lost function after function. And now at this point, she's barely out of bed.

17:06BJ Miller: So I've just watched her illness, her disability sort of run rampant with her and just take, take, take from her. So growing up with a disabled mom sensitized me in all sorts of ways. We could talk about that for days, but yeah. You went off to college, I know, with no plans of becoming a doctor or palliative care physician. What were your hopes and dreams when you entered Princeton? Certainly medicine had not been on my radar, but I'm not sure what was, frankly. I didn't know. And I was fortunate at that age and that stage to land in a place where you didn't really have to know. I just got to explore learning in this cool way.

17:49BJ Miller: And it was beautiful. I loved it. I don't know where I would have headed. I probably would have defaulted to sort of following in my dad's footsteps and sort of into the business world of management or something. Oh, my God. You would have hated that. Yes, you are absolutely correct. I would not have enjoyed that. But another way of saying that is things happened in my life that made it clear that there's a lot of other stuff I would enjoy so much more. In case it's not clear, the things that happened in BJ's life started with climbing on top of that train at Princeton and getting hit with 11 ,000 volts of electricity.

18:28For a while, doctors weren't sure BJ would survive his injuries. So you've said that you don't remember being aware that you were close to death until after the danger of dying had largely passed. What do you remember about being told that you'd become a triple amputee as a result of the accident? That was a really interesting moment. With burns, it's not always clear how much tissue is viable.

18:55BJ Miller: and for that reason, and also you're hemodynamically all over the place. Your blood pressure, your heart rate, you're not stable. So you're not a great candidate for surgery if you don't have to have it. So my first surgery wasn't until I think day five or six. Of course, you want to leave as much tissue as possible, but that ends up being a nidus for infection, and that's the thing that often kills people who have been burned. And so there's a real, obviously, highly technical thing happening at the medical level. I mean, obviously, I was terrified. I was in pain. I was confused. I was many things.

19:30But there was also a piece of me that sort of knew what was happening. I wasn't surprised to hear him say I was about to lose the legs. And the real wild moment was when I came out of that first surgery. The burn unit, again, super antiseptic. you know my parents could only visit one person at a time no friends could come in you know it's really you're you are wholly cordoned off but there's the journey to the OR and I remember coming out of the OR and heading back to the room and my friends had showed up just to be in the lobby so beautiful so it's like the people who showed up I couldn't believe it I was so surprised to see all these people and I remember I saw my mom first and I just remember saying to Or, oh, wow, Mom, now we have so much more in common.

20:17And I meant it.

20:22By the time BJ realized how close he'd been to death, it was four to five weeks into his recovery, and the danger had largely passed. Part of me thinks I was just out to lunch and didn't know all sorts of things that were happening. But I think actually a part of me, and not, I don't say this as a comment about me, but as about humans in general, when they're cast into situations that are so intense, dangerous, where there is no choice in the matter. You are just in it. I remember them talking about when they were operating on the arm and they were going to have to maybe take it at the shoulder.

21:06And I remember the sort of life and death conversation kind of hushed in the corners. But I just remember having this knowing that I wasn't going to die, that they weren't going to take the arm at the shoulder. There was this subterranean deep thread that was calm that knew something about how this was going to go for me. And it was mysterious. I don't know what that voice was. I've never talked to other people about who've been in similar situations, whether they had such a voice. But it was a really kind of a cool piece of this. Something in my body knew what was happening. Has that voice ever come back to you since?

21:47Yeah, if I let it, you know, it's a deep, quiet, subtle voice. It doesn't yell anything. But I have to, I mean, yes-ish, but I have to be, you know, With our educated minds and our conscious minds kind of pushing us in various directions and us trying to will ourselves to do things and all that stuff is so loud that it's hard for me to hear that other knowing voice, that mild, quiet, knowing voice. I can. He's in there too, but he's not as accessible to me. I have to really work to hear him. Yeah. Does that scare you? No. No, quite the opposite. it. It's comforting. If that knowing voice was telling, I think, if that knowing voice was telling me, you know, maybe this was really the end, the content of what that voice was telling me was not the thing.

22:41It was just this calm knowing inside of me, whatever, wherever this was headed. I don't think it mattered much what the voice was telling me. It just, it was a, it was a calm relationship to the truth. Calm relationship to the truth. Oof. Yeah.

22:59Okay, big question for you here. How did your accident change how you saw yourself and then how others saw you? In so many ways. We could talk for days on this stuff. And so much of this is thanks to growing up with the mother I did and the family that I did. A dad who loved my mom, who happened to be disabled, etc. I mean, the whole picture was very helpful for me in so many ways. So I knew from a very young age that the identity and that we put so much stock into our appearance and the way we look and our relationship to the norm or the standard thing, the comparing and contrasting. I was certainly subject to all those forces.

23:46but a piece of me just watching my mother in the world knew there was something else going on too and knew that my mom I'd watch people treat her as though she was a tragedy or less than or not worthy or all sorts of junky stuff and so from a very young age I I knew better I as a five-year-old I was in this way wiser than a lot of middle-aged people who are throwing a bunch of junk at my mom And so I knew that we weren't our bodies this way. So I couldn't pretend to think that my life was over now that I didn't have four limbs or whatever, now that I couldn't play football. I knew enough that that was just bullshit.

24:33That wasn't factual. That was huge. A lot of my compadres in the disability world or in the rehab hospital setting, You know, they had to go learn that lesson and that could take years if you ever get it. But I just, I had such a head start. I already knew that was the case. Now I did have to sort of backfill in the gaps in my own feelings about it all. And then another piece of the answer to your question, Shosh, is, you know, I'm a suburban white guy who went to an Ivy League school. And, you know, externally, I'm one of those guys to whom much was given, silver spoonie kind of stuff. and I knew that I was lucky in those ways, but I also knew that that didn't do justice to how I actually felt.

25:22I often felt, I was sort of a melancholy kid, I often felt like I was, you know, on the wrong planet or born at the wrong time or into the wrong body, like that I was not experiencing life as a super lucky guy to whom much was given. I was aware of all sorts of sorrows, my own and others and how hard it was, even if he had four limbs and how I just was, I had a discomfort in my body and in my person. And so when this happened, pretty quickly, the feeling was like, oh, like was relief. And again, this is, there's so many layers to all this. So there was all sorts of a lot of torment, but there was a piece of me that was a little bit relieved because essentially I now looked more like I felt.

26:13You know, I looked different and I'd always felt a little different. I now finally had some obvious struggle. I could feel my own pathos. Now, at least outwardly, not everyone was looking at me like, we're going to give you any credit because you're just a lucky kid. And it also gave me this experience that I always wondered if I was sort of a weakling, you know, could I handle so much of the hard stuff that befalls other people. And so now I have my answer. Yeah, I could. So there's so much to this. I mean, I'm just highlighting some of the really positive things. And again, the course to get to these lessons was tricky.

26:49But those are all undeniably true statements and the sort of the lasting ones for me.

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28:29Miller returned to school at Princeton. You said in those early days that you would have hidden your disability if that was possible to hide it. Yeah. What made you change your mind about that?

28:40BJ Miller: Well, I remember my parents when I was heading back to school and I was trying to get a driver's license again. And I can't remember the order of things. But mom, I think it was applied for a disabled license plate. And I remember being really upset about that in contrast to what everything I just said. Like it took me a while. So I just remember being really upset that I was going to be signaling to the world, even through my car, that I was a quote unquote a disabled person. I didn't want to lead with that. I just had a lot of mixed feelings about it. So the upshots of what I just described to you, so much that came because I did not have a choice.

29:18at the level of identity of how I saw myself in the world. I was inherently, at least on this frame, out of the closet. I couldn't pass. And, you know, the staring from strangers and parents pulling their kids away from me and all that stuff was very painful. And I knew from my mom that that was their problem, not my problem. But it still sucked. I still did not enjoy it. So that's why I say I would have. Sure, if I could have passed, I would have.

29:47BJ Miller: But so much of the power came because I didn't have a choice. I had to kind of own this eventually one way or another. And that, in so many ways, that's something I'm extremely grateful for. BJ, how did you decide to become a physician and specifically a palliative care doc? So got through college. I majored in art history. Graduation rolled around. I did not have any clear sense of what I was going to do for work. all I really knew is that I had developed this broad interest in being alive and this broad interest in what makes a human being a human being, a broad interest in a sense, giving back.

30:28I don't love that language, but a sense giving back. I mean, people went to so much trouble to help me survive. And so I did feel something of a death. And I knew from my mom and from the disability rights movement that my own experience in this body was something, as we've already discussed, that would teach me things and made me in some ways more creative and more resilient. And this in some ways was something to celebrate and love. And so I wanted to find a way to work with it, not, you know, put it behind you, this sort of overcome kind of language. How do you, It's not, I'll never overcome it.

31:05It's not in the past ever. So I knew these things. And so that it's a matter of taking that suite of impulses and trying to find how to apply that. There was a moment like, well, gosh, if my physician had walked in, in this body, like, wow, how powerful that would have been for me. So it felt like a way to exercise the things I was learning where these experiences would give me insight. It would be in some ways something of an advantage. If you think of medicine, the practice of caregiving having something to do with empathy, my empathy machinery was really ramped up. So medicine lit up as an interesting way to exercise all this stuff.

31:47And I also remember I really do, I do much better with low expectations. And I remember thinking, that's kind of a moonshot. I didn't know any disabled people in the medical system. And the medical training thing is not easy physically. And so it was fun to pick something that no one would have expected me to do or would wonder even if I could do. because that was more motivating for me to dramatically just stomp all over these low expectations that I was receiving from others and tempted to take from myself, you know? So something in that mix pointed me towards medicine and frankly shows I didn't have anything else I knew I really wanted to do to make a living.

32:32So it wasn't like this huge passion. My deal with myself was like, don't die on this hill. Like you almost just died. Now don't Die trying to prove that you can do medicine, whatever. So if it gets too much, you'll drop it. At this point, by now, I was starting to embody the lessons of I knew how to fall. I knew how to fail, quote unquote. And that was a real gift, too. So I could try things. If it doesn't work, it doesn't work. What's the worst that could happen? It never did get to be too much. BJ graduated medical school, but then he hit another snag. I thought I was going to go into rehab medicine.

33:10I felt like the closest fit. And deep into medical school, I fell out of love with rehab medicine for all sorts of reasons. And I actually dropped out of the match. I didn't know what I was going to do. My buddy and I were working in a little tea business. But it was my dean at UCSF, two deans there. And they said something like, I hear you, but why don't you do your internship? Once you've done that, then you can have a license as a GP. It's easier to jump back into medicine if you want to. So they convinced me to do my internship. I did my internship at the Medical College of Wisconsin, which is where my parents were living in Milwaukee at the time.

33:45I went back to be with them. And over the course of that internship, I stumbled into a palliative care elective and fell immediately head over heels in love and reoriented to palliative care. And that was it. Off I went. And my goodness, thank goodness you did, because you have certainly made the field so much better. by being a part of it. Thank you. I think I know the answer to this, but are you a better physician because of what you experienced?

34:14BJ Miller: Infinitely. Of course, I have no idea how it would have been without it, but yes. Undeniably, yes. Especially in our field of palliative care. You know, if I were a surgeon or something who was doing more manual work, probably not. But in palliative care, undeniably, yeah. And this is one of the really interesting things about the way that BJ views his disability. On the one hand, he sees his brush with death as something that opened him up and made him more able to connect with people who are facing the end of life. And on the other hand, he believes that disability is a construct, like race.

34:51Tell me more about that. Well, so, if you think about it, like, disability,

34:57BJ Miller: so what's the dis? It's dysfunctional. Something's aberrant. Something's gone wrong. Compared to what? So who gets to be the standard? What is the standard against which we're comparing everybody? I'm disabled only insofar as I'm not, you know, the normal body. What the hell is the normal body anyway? What gets the prize of normalcy and standard? You just look around. We're making that shit up all the time. I'm disabled by some measure, but I'm more functional than a lot of people I know with four limbs. You get clear on the made-upness of so many of the ways that we divvy the world up, or the nature of identity is such a made-up phenomenon.

35:44BJ Miller: It's a powerful one reified by culture and society. And I would be lying if I didn't say it wasn't sometimes painful to not be included in the world of the norm. But by now, it's also fed me so much and made me question so much that I found valuable. So when I see someone, one of our patients, you know, struggle, feeling abnormal, feeling dysfunctional, feeling left out, well, I have obviously a lot of feelings for what they're going through. And I also get to know that on some level, if we have enough time, we can talk ourselves into realizing, like, again, that's the world's problem. You get to be normal because you are.

36:28The comparing contrasting crap is powerful and unavoidable and also so problematic. This is needless suffering. Sometimes when I used to talk to school kids more often, so eventually some kid, you know, don't you miss having two hands or all your feet or something like that. I would always love those questions because then I could say to them, well, yeah, you know, sure. Yeah. Two hands was, yeah, it was a lot easier. It was great. Yeah. But yeah, don't you miss having three hands? You know, and they would look at me like, what the, what are you talking about? And sometimes the kids would get it and be like, oh, right.

37:09Like, you know, that's just because that's what most people have. That's what we just assume is the way. But wouldn't it be great to have three hands? And I, as a one-handed person, wouldn't it be great to have two hands? Sure. But I'm pretty sure you don't sit around shows thinking, God damn it, I wish I had three hands. You just got to find your way. And this happens with illness in our line of work all the time. You got to find your way to not the way you wish the world to be or like the way the world is. And the way my world is is in this particular body. And I get to do all sorts of things with this body.

37:44It's great. You've had to navigate a lot of assumptions. from people about what your life must be like. How do you handle it when people make those assumptions about your capabilities or your happiness? It used to be more upsetting. Now it's just playful. Like now it's sort of just fun because like it's always the thing to learn for all of us is when you're kind of on the receiving end of other people's projections, and we all are, you know, we're projecting all the time, but you get, I'm just, I'm a little more savvy at spotting it now. Because I do care what other people think. I would be lying to you if I did.

38:22I still, I do. I care what people think. I care. So if my presence is causing anguish for someone or it's flummoxing for someone or whatever, I don't like that. I don't enjoy that. and eventually, as we all must, you know, got to learn that the projections from others are not our responsibility. I have to remind myself of that daily, by the way. I mean, as physicians, I mean, even if I'm not practicing medicine per se, we have taken oaths. We are committed to the well-being of others in a powerful, serious way. So I still have to remind myself because we can affect each other's experience And even though I might be able to affect someone's experience who's projecting a bunch of junk at me, that's not mine.

39:15Their stuff is not mine. It's not my responsibility. That lesson continues to be a tough one, but I'm a little closer to remembering it because of all these things. And a really helpful thing for everybody to think about and remember, right? Yes. One thing that's super I want to make sure to get across. These stories are dramatic or different in some ways compared to some. But they're just variations on the theme, themes that we all go through. Yeah. Mortality, suffering, some more obvious than others, differences. Are we good enough? Are we whatever enough? Are we normal? Are we abnormal? You know, these, I would think, are universal.

39:59Yes. This has been sort of an obvious situation that's pushed these issues to me earlier in life, per se. and therefore force me to deal with those very important questions in a serious way. This is stuff for all of us. You don't have to lose limbs to kind of wonder if you're right in this world.

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41:51We live in a culture obsessed with dieting, weight loss, and exercise. And that can make eating disorder behaviors easy to miss. But the reality is, eating disorders are serious mental illnesses that take a major toll on your health and your life. But recovery is possible. Eating disorders are more common than you might think. Chances are you know someone who is struggling with one. Or maybe you're struggling yourself. If you're concerned about an eating disorder in yourself or a loved one, I want to introduce you to EQIP. Equip is a fully virtual, evidence-based eating disorder treatment program that helps patients achieve lasting recovery at home.

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43:04He swears he didn't do it. How far will each side go to prove they're right? Like it's just one bombshell after another. You know, you're like, what? What? What? The story of a PlayStation, a brain-eating amoeba, and the relentless pursuit of justice. Off-Duty, out now. Listen wherever you get your podcasts.

43:40my conversation with BJ is one that I carry with me the way that he talks about his body not as a problem to overcome but as a truth to live inside of really shifts how we think about disability. It reminds us that so much of the suffering that people with disabilities face doesn't come from their bodies themselves, but from the systems and the attitudes and the structures that are built around them. BJ's story also reminds me that disability isn't an edge case. It's a dimension of human life that any of us can join at any time. And this reality has so much to teach us about vulnerability, about resilience and care.

44:22All of this to me raises a bigger question. If disability is part of human diversity, what would it look like to build a world that actually includes that diversity in our schools, our workplaces, our policies, and our everyday choices? That's exactly what we'll explore in this upcoming TED Talk. Disability inclusion advocate Megan Hussie shares how growing up with her sister with autism shaped her understanding of stigma and how that experience opened her eyes to a global reality. Megan walks us through the scale of disability worldwide, the hidden costs of exclusion, and the ways negative attitudes quietly limit opportunity for more than a billion people.

45:03And now Megan Hussie. I've never known life without disability. Disability is where a physical or mental condition or impairment is combined with physical or social barriers that make it hard for a person to do certain things or interact with the world around them. Disability is very diverse, with a wide range of experiences that can affect a person's ability to see, move, hear, learn, communicate, or interact with others. In my case, my sister Erin is autistic and has intellectual disabilities. She processes the world differently. She enjoys riding her bike, collecting rubber ducks, watching YouTube videos on repeat, and spending the money she earns at work.

45:47When she's really happy, she squeals and flaps her hands. Though for many people, Erin is different, she is my normal. In my family, we were raised with a core value that different is not less. But it was made clear to me that the rest of the world did not always share this value. Like I'll never forget one time in middle school, my sister's aide had made a video of her learning how to communicate using speech and sign and thriving in an inclusive classroom where she was loved and accepted just for who she is. And I brought it to school wanting to share to give my classmates the opportunity to learn more about autism, only to be told by my teacher that the faculty had decided against it to protect me from other students inevitably making fun of her.

46:31It was one of many instances that taught me what stigma was. With every rude comment when Erin would have a sensory meltdown in a public place, with every casual use of the slur retard by even childhood friends of mine, with every judgmental stare, I learned that the rest of the world didn't necessarily see Erin for the full human being that she is. Now, when I went off to college, I didn't know what role, if any, disability would play in my life outside my family. It wasn't until I studied abroad in China for my international relations major that my personal background with disability and my career came together.

47:07Through a class I was taking on social issues in Beijing, I had the opportunity to visit an autism school there and was introduced to a local disability rights advocacy organization. I ended up interning with them and got completely absorbed into that community. I was finally able to see how my family's struggle was part of something much larger, and the magnitude of what I found actually shocked me. Over a billion people, an estimated 15 % of the world's population, has some form of disability. And persons with disabilities as a group worldwide face huge amounts of stigma and disadvantage. Like just to use education as an example, of the 240 million children with disabilities in the world, about 50 % have never been to school.

47:55I was appalled that I had been studying global human rights at an Ivy League school, and even though the problem was so unbelievably huge, not once had disability really ever come up. So I decided to pivot, and I've spent the past decade in my career to disability inclusion in international development. I returned to China on a Fulbright scholarship to do research on education and programs for autistic adolescents and adults. I then went on to do research or work with disability organizations in places like Tanzania, Ireland, and South Africa. I now work globally with Special Olympics, using sport as a platform to teach and promote inclusive attitudes.

48:33And what I've found is that all over the world, even though countries' specific cultural contexts or systems might be different, the underlying problem of attitude barriers remains the same. And the research backs me up. The second most cited barrier to inclusion after lack of data is negative attitudes towards disability. What people don't realize is that exclusion hurts everyone. The International Labor Organization estimates that disability exclusion costs low - and middle-income countries between 3 % and 7 % of GDP. But the opposite is also true. Inclusion could help everyone. Our research at Special Olympics has found that inclusive sport and youth leadership programming has benefits for youth both with and without disabilities, especially when it comes to developing key social and emotional skills everyone needs to succeed in an increasingly diverse and interconnected world.

49:28And this is held true in countries as different as the United States, China, India, Kenya, and Greece. The good news is there are four things we all can do to make the future more inclusive. Number one, we need to reevaluate our own attitudes towards disability. I still get questions about whether it is realistic to include persons with disabilities in international development programs when even the so-called regular people are struggling. There are still too many stereotypes that associate disability with pity. And we're still living with social systems and physical structures that segregate people with disabilities.

50:07So fewer people have it as part of their everyday experience, and it still makes them really uncomfortable. We need to reevaluate these attitudes. Needing accommodation or support does not make a person any less deserving of dignity and respect. This is a matter of justice and equity, not charity. Second, choose to include. Solving this issue is not just a matter of policy. There are plenty of countries that have disability laws on the books or have signed and ratified the United Nations Convention on the Rights of Persons with Disabilities, but there is still a huge gap between what is written in policy and what actually happens in practice.

50:47And this comes down to all of us. We can put pressure on governments to make sure that laws are actually implemented, but we can also look at where we have the power to affect change. We should be looking at organizations' diversity, equity, and inclusion strategies and see where we can be doing better. Too often, we still fall short of recognizing disability as part of human diversity. We would all benefit by not only accommodating, but actively supporting and including persons with disabilities in the workplace. Third, we need to recognize where disability intersects with every issue area. When we talk about gender equity, we need to be inclusive of women with disabilities, who are actually more likely to be victims of gender-based violence.

51:31When we talk about global health and health systems, we need to be inclusive of persons with disabilities, who are more likely to have poor health outcomes, often not because of their actual disability, but because of stigma and lack of access to care. Everyone has something they can do to make their work more inclusive, and together, these collective efforts can result in the cultural shift that we need. Finally, and most importantly, don't just listen to me. Listen to persons with disabilities themselves. All over the world, there are incredible self-advocates, like my friend and colleague Ben, who is both legally blind and has an intellectual disability, and who successfully advocated to the D.C.

52:12Department of Transportation to get voice and sound added to the crosswalks near our office to make it safe for him and people like him to cross the street going to work. Or Brina from the Philippines, whose parents were told upon her Down syndrome diagnosis that they shouldn't set their expectations too high, but who has become an assistant preschool teacher and a UNESCO champion for inclusion in education. Or Hasib, who has actually been on a TEDx stage before me to speak out against the stigma he has faced as an autistic young person in Pakistan. And I could go on and on and on with others who have shared their lived experience of disability in books, speeches, blogs, podcasts, and social media.

52:55When you're looking for ways to make your work more inclusive, seek out the voices of persons with disabilities. Really take the time to listen to what they have to say and follow their lead. Disability has always been and will always be a part of my life. Erin and I deserve to live in a world where she has more opportunities to be supported and included. Aaron, Ben, Brina, and Hasib are only four out of over a billion people who are just trying to find belonging and live their best lives in a world that was not designed for them. Indeed, a world that was designed to hold them back. Not because it had to be that way, but because people built systems around attitudes that other and exclude them.

53:41And all of those people have family members like me whose lives are shaped by this issue and communities who are affected, whether they realize it or not. Disability inclusion is not something nice that we do for those people. It is something critical that needs to come from all of us. Thank you.

54:08that was Megan Hussey at Ted Salon Bezos Scholars and that's our show for today if you'd like to hear more conversations like the one you heard with BJ Miller today you can find Before We Go wherever you get your podcasts just search for Before We Go and hit follow to hear the full season including episodes with caregivers comedians actors and fellow Ted speakers all talking about how we live alongside mortality and change. Before We Go is a production of Podcast Nation and me. Our production team includes Karen Given, James Brown, and Madison Britt. Original music by Edward Ayton. If you'd like to see photos and videos and connect with other Before We Go listeners, please visit us on Instagram at BeforeWeGoPodcast.

54:52TED Health is a podcast from TED. This episode was produced by me, Shoshana Ungerleiter, and Jess Shane. Edited by Alejandra Salazar and fact-checked by Vanessa Garcia-Woodworth. Special thanks to Maria Lages, Farah Degrange, Daniela Balarezo, Constanza Gallardo, Tansika Sangmarniwang, and Roxanne Heilash.

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