How Disability Teaches Us to Change the World with Brooke Ellison

[00:00:00] Adam Gamwell: Hello and welcome to This Anthro Life, a podcast about the little things we do as people that shape the course of humanity. I'm your host, Adam Gamwell. Have you ever noticed the small bumpy nubs that line the edge of a sidewalk just before the street? They may seem like nothing more than a design element, but those little nubs actually serve an important purpose for people with low vision. They help them locate the crosswalk and know where to wait for the traffic signal to change. Now, let's think about this for a moment. Now, if you're sighted or can see well enough, we often take our vision for granted and don't realize the small barriers and challenges that people with low vision face every day. 

[00:00:35] But this isn't just about vision. Think about the challenges that people with disabilities face when trying to access places that were not designed with them in mind. And you can even think beyond traditional definitions of disability here. Maybe you've been too short to reach an item on the top shelf at the grocery store or wrestling with a fussy two-year-old while trying to fasten a seatbelt that requires two hands. So whether it's a lack of ramps or narrow doorways or inaccessible transportation, every barrier is a reminder that designs are choices, and not everyone is included in the decision-making. Yes, there are laws in place that require businesses and public places to be accessible to people with disabilities, but there's a long way to go. And this is not just about adding ramps and widening doorways though. It's about understanding the experiences of people with disabilities and creating intentional designs that cater to their needs and, even more crucially, including them in the process of designing places, spaces, policies, and more. And the stakes are high. This is about dignity. It's about respect and equal access for all members of our society, and we can't afford to be leaving people behind or treating them as an afterthought. So the next time you see those bumpy nubs on a sidewalk, take a moment to acknowledge the barriers that people face and think about how we can do better as a society to create a more inclusive world.

[00:01:48] On today's episode, we explore the complex and often misunderstood world of disabilities. My guest is Brooke Ellison, a professor and medical ethics expert. She's also an accomplished author, speaker, and advocate for disability rights, as well as she's run for public office. Brooke's work as an advocate for disability rights has led her to serve on numerous committees and advisory boards, including the President's Council on Bioethics and the Spinal Cord Injury Research Board of New York State. She's also been a sought-after speaker, sharing her story and advocating for change on platforms such as TEDx and the National Disability Rights Network. 

[00:02:21] At age 11, a car accident left Brooke paralyzed from the neck down and unable to breathe on her own. And in her newest book Look Both Ways, Brooke shares her personal journey and struggles as a woman with quadriplegia of recovery and adaptation and of forging a new sense of self. She shines a light into the often invisible and overlooked challenges faced by those with disabilities in our society. And she also offers a unique perspective on disability, emphasizing strengths and virtues over weaknesses and vulnerabilities. I found this book to be a totally compelling memoir that was filled with stories of resilience and determination, family, friendship, and connection, as well as a call to action for greater inclusivity and equity in all aspects of our lives. 

[00:03:01] One of the key ideas Brooke draws on disability to challenge is the commonly held mantra of individualism or self-reliance. Brooke shares that people with disabilities are often undervalued or invisibilized by wider society, not because they have different needs than people without disabilities, but because disability makes each of us face our own interdependency with others in the built environment. You see, disability has historically been treated as an individual problem rather than a sociocultural one. Said differently, one reason society is so uncomfortable talking about disability is because dependency on others makes it more obvious that we ourselves have always needed and will all need support and care in different ways at different points in our lives. In other words, the lines between disability and ability are not so cut and dry. So what does it mean when accessibility is often an add-on feature or an afterthought? This is not just about making things more accessible but recognizing that mindsets, attitudes, social norms, and the built environment can be formed to make things easier or more difficult to access and participate in for different people. Now indeed, if we realize that we are all on a spectrum of abilities, as Brooke shows us, we have much to learn from embracing disability with dignity and respect. 

[00:04:14] There is a ton of great wisdom and I cannot wait to share it with you, so stay tuned for my conversation with Brooke Ellison right after these messages from this episode's sponsor.

[00:04:35] Brooke, it's a great pleasure to have you on This Anthro Life today. I'm excited to be able to speak with you. And also, I think really cool to get to talk to a fellow social scientist, you know? Oftentimes, anthropologists, sociologists, some of our many monikers don't always get to chat in the same room, so this is a cool feature. But I want to thank you so much for joining me today. 

[00:04:50] Brooke Ellison: No, it's my pleasure. Thank you so much for having me. I know you're absolutely right. We tend to be few and far between, so it's great to have a like-minded person to talk to.

[00:05:00] Adam Gamwell: Right on. And so, there's a ton of topics and areas I'd love to explore with you today. And so part of this the discussion I'm hoping we can have is to dive into areas that are most pertinent to you today and what you most want to discuss. I mean, obviously, we've come together around your book Look Both Ways in terms of this really great mix of kind of memoir and what I would say — I'd sound like a nerd — sociological analysis but giving some nice like bigger pieces of how does some of the pieces of the story fit together and how are we as individuals like placed in sociocultural and technical systems. But then also really the, you know, some parts about the kind of the triumphs and the tribulations of the human heart, right, and what does it mean to love and to live and that we may all have unique lives and at the same time that's also what brings us together in kind of a unifying capacity. So in a broad sense, I just want to I want to say that I really appreciated the work and kind of going through your story.

[00:05:48] Brooke Ellison: Thank you. Awesome. This is such a great question. Like you said, it's rare to get to talk with this level of depth about something that is really quite important to me. So my first book that my family and I wrote was right after I graduated from college. So way back in 2001-2002. So a long time ago. And at that point, I was just, you know, a wee lass, you know, really not without any real firm sense of who I was or what disability meant to my identity. I had lived at that point for I guess 10 years, if not a little bit longer, with quadriplegia, right? So the accident that left me paralyzed from my neck down happened in September of 1990, so 10 years or a little bit longer than that. After that, you know, I had lived with quadriplegia, obviously, as a part of my life, and it affected my life. It affected the lives of everybody in my family. 

[00:06:46] So my first book was kind of a chronicling of those events and those experiences and the kinds of really difficult challenges that my family and I underwent to get from the time of my accident to my graduation from Harvard ten years later. I knew after that that I wanted to write another book, but I didn't know exactly what that was going to look like, if it was going to be simply a continuation of almost a diary-like chronicling of my life or something different than that. And, you know, for the, you know, the following two decades, I kind of dawdled a bit about, you know, what that book would look like, should I do this, should I not? And but at the same time, I was learning important things about who I was, who I am as an individual, how you incorporate disability into an identity, how to be disabled, right, which is something that I understand to be vastly different than learning to just simply live with a disability. They were two different things. 

[00:07:47] And that process from where I was in 2001-2002 to where I am today was a tremendous learning process, a tremendous learning curve that I had to undergo that forced me to be highly introspective about who I am, how my disability affects my life, not in I think the initially expected ways that it makes somebody a weaker person or a less adapted person or somebody who doesn't quite fit the social mold into somebody actually who is stronger and who plays a specific role in society but I can define that role for myself and that my position in the world is the product of many of the important virtues that I think we ascribe to people in society, right? So my life is the product of strength and resilience and leadership and hopefulness and, you know, problem solving and all these things that people with disabilities have to integrate into their daily existence. And I think we often think about disability in terms of its deficits or the deficit model of disability or the medical model of disability that forces us to think about disability in terms of its weaknesses and vulnerabilities. And that was kind of a narrative that I needed to change for myself and I want to help change for other people. 

[00:09:11] So my book really incorporates a lot of personal narrative, a lot of deeply emotional and personal experiences that I didn't really have the sense of capacity or wherewithal to talk about or even write the courage to talk about or the self-reflection to talk about. And then, putting that in a more sociological frame, right? So my PhD is in sociology and I think that, you know, like my book is like an instance of tell me you're a sociologist without telling me you're a sociologist. Like it's all throughout the entire text of the book. And like I think that that's important because it makes the work not simply anecdotal but something that I think is a little bit more generalizable and forces people to look at themselves and how they interact, not just with people with disabilities, but with even challenges of their own lives. And I'm very kind of forthright about that at the beginning of the book — that I did not want to write a book specifically about disability, despite the fact that disability is so much a part of who I am and so much kind of strewn throughout the pages of the work, but, you know, a book that highlights disability as a kind of very emblematic or obvious representation of many of the challenges that people face in their lives and how we tend to run away from them or feel isolated by them rather than understanding them as being one of the few universals in our lives, you know, that brings us all together. 

[00:10:37] Adam Gamwell: That was a piece that really resonated with me as well is that how can we both face some of the most challenging circumstances that we must in our lives that oftentimes are thrust upon us but then take the time to be with them, right? And I think one of the words you said there that really stuck with me also is the idea of integrating, right? And so it's like how do we both take ownership of a sense of identity, especially in a society that is designed not for disability, right? Or like it's framed architecture, right? It's framed social interactions, you know, so much that you write about it, these small challenges in terms of trying to get to a movie theater. I mean, that really stuck with me — the time that the movie theater operator kind of yelled at you and your family, which is heartbreaking, but also it was interesting. Just noting like that certain people like their reaction to being uncomfortable themselves, you know, is kind of reflected and pushed back in not great ways. But so even this idea I think it's really stuck with me, too.

[00:11:26] And I think one of the powerful things that your work does is unflinchingly say, "We're going to sit and talk about this. We're going to reflect on both disability without being about disability," right? And I liked this idea that was really helpful to think about, too, of what does it mean to incorporate and to build my own sense of identity as part of, with, for, alongside, against, even, right, in terms of these different ways of being. And so I think that's a really powerful piece. And I mean, even to this too as you know too that you have done so many like — you even say this in the book too, right, like even what you've done anyway in your life has been such an incredible journey in terms of working in politics and, you know, running for state, teaching, you know, working both in professor and patient capacities. So all these pieces, too. 

[00:12:08] So, I mean, I guess one thing I'm curious about this too in terms of like, you know, I know you've done a lot of public speaking and talking with families and kids and also university students and medical students. And when we're sharing these kinds of stories, like what are some of the, I guess, the tactics or successes you found in terms of like bringing in your personal experiences also when we're talking about some of these bigger sociological analyses or these bigger challenges that are being faced? Like how do we weave in kind of personal experience with teaching, with speaking, with offering leadership?

[00:12:35] Brooke Ellison: Sure, sure. So I think typically from an academic standpoint, right, it's not necessarily looked upon very favorably to speak anecdotally about your life, right? It kind of problematizes very important social challenges at the level of the individual, right? I think that's kind of how we have understood disability, historically speaking, right, that it's a problem experienced at the level of the individual rather than something more sociocultural. So that's kind of just like, I'll put that aside for now, but that's something that I've thought a lot about. But at the same time, right, I think that the experiences that I have that I've had are extremely valuable, right? They are unique but extremely valuable in articulating a larger narrative about human strength and what we're able to do and how instances of marginalization can have a tremendous impact on people's lives. And that, you know, my life is a representation of how many people with disabilities are marginalized. 

[00:13:33] And so claiming ownership over that narrative was something that took me a very long time to actually be able to do. So for many years after my accident, I was kind of sequestered and — in my own community, right? So I returned — I was in the hospital for a total of nine months following my accident, and then — you know, seven and a half of those months in rehabilitation, where I was just kind of taught the basics, taught me basically about living with a disability, right, accommodating my own life to a world that was not designed for me. Like basically making the modifications to myself rather than advocating for something larger than that in order to return home. And then, in this kind of very protected environment that I lived in for a number of years, I never had to talk about my accident or the kind of the trauma that produced my disability. Because of that fact, I wasn't able to disaggregate my disability from the trauma that caused the disability, right? So those two things were just inextricably linked for so long. And because of that, you know, I could not talk about the experiences that I had undergone without becoming just, you know, breaking into tears, bursting into tears, and becoming just overwhelmed with emotion. They were just inseparable for me. It wasn't until years after that I said, "Wait a second. You know, I need to be able to claim ownership over this story. I need to be able to articulate it and think about it without being afraid of it." And that didn't happen until I got to college. And the graduation speech the commencement speech that I gave at the time of my graduation in 2000 was my first kind of public speaking undertaking. And then, I haven't stopped ever since. 

[00:15:18] And that it took a lot of practice and a lot of like training in my head to be able to say, "Okay. I'm going to talk about this really difficult event in my life and not be afraid of it." And I think in that process — and this is something that I've discussed in the realm of resilience and hopefulness — like in claiming ownership over a narrative, it forces you to kind of rewire your brain or your brain rewires itself from having these memories in like emotional memory to ones that are like in the prefrontal cortex that you have to use like, you know, a more regular memory, and that's empowering, right? That's empowering to say, "Okay. I'm going to not let this traumatic event frighten me anymore." And because of that, I've been able to talk about, you know, my injuries and like the devastating aspect of my accident and then understand what has come after that in terms of strengths, right? Like my life has undergone trauma, but my life is not traumatic right now, right? It has been affected by tragedy, but my life is in no way tragic, right? Like to understand those two things was critically important for me. 

[00:16:31] So I talk about my life, you know, all the time now. It's just one of my favorite things to talk about is myself. I think that the kinds of things that I've experienced, you know, are impactful to other people. I think they gain something from knowing that other people have suffered or have experienced devastating loss and have found a way to move forward nonetheless. It can do some pretty impactful things irrespective of trauma that can really characterize our lives or be a central part of our lives or, for me, a kind of a transitional part of, you know, of my life. So I talk when I teach. You know, I teach medical ethics, and I couldn't possibly talk about questions regarding medical ethics, whether it's end-of-life decision making or how to live on medical technology or is healthcare futile, without talking about the experiences that my family and I have undergone. And I think that that is really of benefit to my students. Like I think to have a personal perspective on this is in no way a lesser conversation, but a much richer conversation, right? We're not just talking in theoretical terms, which I think is often how medical ethics can be approached by kind of talking about classic landmark cases almost as if they're in the abstract. To me, actually saying this is something that happened to me, these are the kinds of agonizing decisions that my family and I were forced to make or thought we were going to have to make or these are the kinds of ways that I have come to understand the relative worth of my life now and how maybe medicine — that level of worth to my life at the time of my accident — like all of these things I think are really important for students to hear.

[00:18:14] Adam Gamwell: I think that that's a very powerful framing. And it is interesting, you know, as we think about both the teaching profession and bringing up the next generation of folks in any realm, right, like whether we're doing it in a classroom or beyond. And so I'm not a teacher. I've taught for years, but I don't teach now. But definitely one of the same kind of pieces that like — educator at heart, I guess I'll always say. But the point you shared there in terms of like the value of personal experience where I can take these more abstract ideas and kind of ground them. And like the flip side idea of that is that oftentimes, we will take grounded experiences, then we'll kind of build explanatory models or theories out of them. And like there's value in doing that, of course, right? Because that's actually where we may get policy, right? We may get — here's the experiences that people had and let's attempt to translate them to something that's — 

[00:18:59] You know, and I think about this too like the other piece that you share there too I think that was really helpful for my thinking in that you noted that like as we're thinking about the idea of like building hope, right, you know, in the book, you do talk about these kind of three pillars, which I thought was really helpful too to kind of categorize or give us some ways of understanding how do we think about hope, especially in these moments of like having to revisit trauma, right? Like even the neurological moment you noted that there is power in our brains when we retell our stories, right? We can actually change how we're thinking about and how we experience the experience but how we might re-experience moments and as we integrate them in different ways. So I'd love to hear kind of a bit more about this. This is the part that really also kind of helped me think through what are some of the pieces? Like if I, you know, I guess I'm always a tactical thinker. I'm like how do I like think through what I'm trying to get here, you know? So I like this model of hope. I thought it was really interesting as well as the knowing that like there's neuroscience research that shows telling our stories helps us re-experience things in new ways, reintegrate them. So I'd love to hear a little bit about that framing, how you came up with the model of hope as part of that.

[00:19:57] Brooke Ellison: Sure, sure. It's a pleasure. So I started talking about hope and thinking about hope and how it intersects or does not intersect with the construct of resilience way back when I was an undergraduate in college, right? So talking, oh my gosh, a long time. Okay, so 25 years ago now, something around there. And so my undergraduate major was cognitive neuroscience. So at this time, this was a new program at Harvard and it was an intersection — it still is an intersection — of psychology and biology, some mind-brain behavior track within this overall program. And many of the students who are in the program with me were using this kind of as a launch pad to go to medical school, right? It was kind of a very — it was a program that was well suited for a future physician. And I remember talking about — and it was an honors-only program, so everybody had to do some kind of undergraduate thesis. And I remember talking to my fellow classmates about, you know, where they were looking to take their work or how they're going to do their research projects for their thesis. And, you know, I talked about mine and I remember very vividly that they were always like, "Huh. That's an interesting, you know, tactic to take for medicine." And I remember thinking at the time that, you know, as somebody who had experienced so much healthcare, so much medicine, a disproportionately high amount of medicine, that construct of hope was so important to me, probably the most important aspect of who I was that got me from where I was at the time of my accident to where I was at that time. 

[00:21:34] And, you know, when you hear the term hope, right, it kind of seems like a fluffy, nondescript, abstract, amorphous kind of concept. What is it? Hold on. What is hope? Just hope for something, wish for something. And that's not how I see it. I think that that does everybody a disservice to think that that is just something that's a fluffy pie in the sky, Pollyanna kind of stuff. So I understand hope to be a very action-oriented construct that understands the challenges that we face, you know, that's not just ignorant of them or tries to cast them aside but is very cognizant of them and says, "Okay. Let's see how we can find a way around this." 

[00:22:13] So I've kind of constructed a mnemonic device for myself with the letters COPE or COPE, with the first part kind of representing the three pillars of hope that I discuss in the book, the first of which being kind of compartmentalizing the challenge that we face, right? So the C for compartmentalization. So I think often, as is often the case, when we experience challenge, disability, or really any kind of challenge, we think that it is all-consuming when it takes over and starts to infiltrate all the different parts of our lives and become just completely, in my sense, paralyzed by, you know, all the different, you know, the level of challenge that we face, it just seems to take over our entire lives. And I think that that is unfair. I think that that does ourselves a disservice — this is how I've lived my life — that we can look at the challenge that we experience and say, "Okay. I'm going to let this affect my life only to the least impactful role that it could possibly play." Say, "Okay. I'm just going to limit this challenge to this aspect of my life and find ways around it or find other aspects of ourselves that we can continue to grow and develop to develop." 

[00:23:22] And that's where kind of the O of COPE comes into play, right? So orienting or reorienting, I guess better said, our focus from the things that we can't do or the things that we have lost to the things that we still actually can do or have a capacity to effectuate change. And that has been completely critical to my ability to move on with my life. So at the time of my accident, you know, I was very much involved in a lot of physical activities, whether that was dancing or singing in the choir or karate. Like that was how I understood my life and defined my life. And then after my accident, I couldn't do those things. And I remember for a time feeling just absolutely devastated and like, oh my gosh. How am I going to understand myself? How do I make meaning of a life that is so devoid of all the things that I had extracted pleasure from before? And but then I said, "Okay. There's still things I can do. There's still ways I can make a life for myself." And I focused, you know, shifted my focus from what I had lost to the things I could do and most prominently my education and how I could fill the time that I would be in the dance studio with, you know, reading books, reading my textbooks, enriching my mind, and trying to find ways to make a difference in the world outside of the physical things that I couldn't do anymore. So the O is kind of orienting or reorienting our lives, the things we can still, you know, be a part of.

[00:24:49] And then the last two letters P, E, right? Personal empowerment, right? So finding first the sense of strength within ourselves to say, "Okay. I'm not going to let this defeat me and I know that there's a path forward. People have done it before and I'm no less than they are." And you're finding a path forward, and then we're finding the people who can you can rely on to help get you to that point, right? So understanding the network within which we all exist, not being afraid to receive help, not kind of buying too strongly into this self-reliance kind of structure that I think our culture is very typically based on, but saying, "Okay. I'm going to seek out help and accept it and then offer help to other people if I know that they need it."

[00:25:39] And I think that that structure has done me just tremendously well. And I know that I've experienced challenge at some of its most profound. And if this level of challenge can be, I won't say overcome, but can be addressed head on, I think others can as well.

[00:25:58] Adam Gamwell: Right on. And I really appreciate, again, that model because it helps kind of spell out some of the pathways, especially when it comes to C, right, that if we're facing traumatic moments or big challenges ourselves or with our family our friends our community and that things can feel totally overwhelming, totally all-encompassing, and then as we can learn to give ourselves both the ability to sit within and then also to distance ourselves. And then, this personal empowerment piece I think was what also really struck me because, I mean, so much of the book that you kind of walk through and as sharing in your story is that some of this work also is it's — I mean, so much of it is about the love and the community that we have around us, too, right, and that like the network that we have makes such a difference. And this is interesting because this is obviously not planned but, you know, in the past few interviews I've actually done on this podcast, too, this theme has come up in different ways — looking at the history of patriarchy, looking at robotics and humanity. So it's like even this idea I think is so interesting that — I'm just reflecting on this now too that like this is this important theme that we are those around us and they are us, you know? 

[00:26:55] And so I'd love to kind of break this idea down with you a little bit too and kind of go in here 'cause so much of this book, I mean, there's both, again, like very heartwarming and challenging also to kind of think through the idea of working, you know, with parents, with family, with friends, with community. And so I'd love to kind of think about this with you too and kind of go through these areas, you know? Like learning a new life with family, right, a new life with friends, you know, is part of the story, and then also just helping folks remember that like we are not alone, right? This is a, you know, a point that you made towards the end of the book too that, especially in the medical context, right? Obviously, hospitals can be one of the most terrifying places. And, you know, many doctors don't always take the time to even to get to know one, right, get to know you. And so all of these pieces, I mean, I'm throwing a lot out there, obviously, but like I'd love to kind of think about this idea too of like how what does it mean to seek help. What does it mean to live with our families? And like tell us some of your experiences in that realm as well. It would be great to hear.

[00:27:42] Brooke Ellison: Sure. So as I mentioned, I teach medical ethics. So I teach, you know, this notion of medical questions or ethical questions to future healthcare professionals and they go into all different disciplines, some into medicine, some into nursing, some into, you know, the allied health professions or what have you. And I ask my students really every year hat for you would constitute a life not worth living. And, you know, they give me a gamut of answers, predictable ones, largely ones that are kind of representative of my life. Like, you know, oh, if I couldn't do the things that I have always done or if I was attached to tubes, attached to machines. Or they often say "If I was reliant on other people and dependent on other people to take care of me." And that is always a baffling one to me, right, because that is how all of us live our lives, right? And for any of us to think that we get to where we ultimately get by ourselves, I think it does everybody a disservice, right? It's a complete misunderstanding of how intricately our lives are connected to one another. And, you know, at the time of my graduation in Harvard, that's kind of the nature of the speech that I gave is that we're all so deeply connected to one another and our focus on self-reliance and our belief that, you know, where we get to in the world is simply because of our own, you know, our own strength, I think it's just a mischaracterization of the reality of the situation. 

[00:29:15] And so I think that that is one reason why the lives of people with disabilities are so undervalued or one of the reasons why they're as undervalued as they are because people with disabilities often have to live with family members or they have to rely on others for help to get through the day when that is really how we all live our lives, right? It's just a little bit more obvious for people with disabilities. And I think that our kind of Western or American focus on, you know, pulling ourselves up by our bootstraps and, you know, the self-made man I think has done all of us really a disservice and a lot of harm because we all have vulnerabilities. We all have areas of our lives that we are going to need supports to try to grapple with or to, you know, events in our lives that we're going to need those around us to try to get through. And if we are so encultured to think that these are this is a weakness or this is not something that we should be proud of, then we won't ask for the help that we need and then you end up, you know, suffering all the more. And I think that that's, you know, that's unfortunate. I think that we see that being borne out in some of the levels of mental health challenges that young people are experiencing right now, especially young men who feel like they don't have the capacity to ask for help or feel like it's a source of weakness and that doesn't do anybody any good, right? So I think people with disabilities are some of the most obvious examples of how lives could become quite beautiful if we accept the help that we need around us and not feel like that's a source of weakness.

[00:31:03] Adam Gamwell: Right. I love that. And I was thinking of the mental health crisis too as an exact precise example of this too, right, that it's bubbling up in ways that we wouldn't expect but, you know, when there's a forced sense of individualism, then it's like, how do I cope? And it's like, I can't, but we can.

[00:31:16] Brooke Ellison: We can. Exactly right. Exactly right.

[00:31:19] Adam Gamwell: You know, it's like how to get that. So I think even this point too I think like there's such a kind of an important broader connection too that I kind of read through in the book, and then I'm hearing in our conversation here too that — well, one of the pieces you kind of point out too is that like, when we actually shine a light on disability, right, it actually — there's fuzzier boundaries than we may think. And I actually really loved the way that you just said that it oftentimes, a person with a disability may the sort of interdependence may just be more obvious. That's like a brilliant, I think, rendering of that because we all need it. We all are interdependent. We just may not we may choose not to see it, right, in ourselves or in others around us. It's an important piece, you know? So this idea of like shining a light to it, like this got me really intrigued too as we're thinking about this, you know, you kind of ask this question of like, well, who really is disabled, right? And when we actually, especially if we're talking about these bigger classification groups and minority groups in the US that you point out, persons with disabilities are actually the largest minority group in the US if not the world. That's a, you know, a very interesting fact that I think a lot of people don't realize. I think it was something like 13%.

[00:32:15] Brooke Ellison: Yeah, I think 15%, right? It was just — yeah, yeah, an enormous number, right? We're talking about, you know, like a billion people around the world, right? So yeah, like you said, it's the largest minority around the world. And but at the same time, among the most marginalized and subjugated people nonetheless, and that's quite frustrating. And I think the fact that we have looked at disability as kind of a binary construct is really — does everybody, you know, again, a tremendous disservice. And I think it has allowed or has fostered this othering of people with disabilities, whether it's either a category that you fall into or you don't. And I think that that's not the appropriate way of looking at it. We're all on the spectrum of abilities that changes not necessarily always in accordance to circumstances that we face but also just kind of age and points in the lifespan are all more and less dependent on those around us and kind of social supports and the built environment differently at different points in our lives. And for us to not appreciate that, I think it's just completely wrongheaded. 

[00:33:24] And I think that also the fixation of the physicality component of disability is also a wrongheaded way of looking at disability also. I think it allows society to abdicate its responsibility and how it plays a role in disability itself, right? So I approached disability from a very kind of sociocultural lens, right, kind of almost like the international classification of function model of disability that looks at a disability as a cluster of experiences that involve the policies that we enact or the social supports that we put into place or the technology that we innovate or the environments that we build, right — all of these things either enable or further disable somebody, right? So it's not just a physical characteristic but all of these different things coming together. And I think unless society understands that it plays a role in how people's lives are either enabled or disabled, then it just can easily say, "Okay. That's just a problem that the individual faces and I don't have any role to play in it." And I think that has fostered this exclusion of people with disabilities in important pieces of legislation where we had a disability policy, which is kind of thought of as its own siloed afterthought-like approach to policymaking rather than integrating people with disabilities into every piece of legislation right from the get-go. Like that would be the hallmark of a society that I'd love to see where everybody is fully included, with the realities and the differences in their lives taken into account right from the get to-go rather than thought of as just some other population who we might choose to include or might not.

[00:35:07] Adam Gamwell: 100% agree with you too, and I also want to see this world. And I think the thing that like also sits with me here too is this idea that we all have a responsibility in this space, right? I mean, even the way you said this too in terms of as we think about the tech we're designing, as we think about the environments that we build, right, or policies too. Again, I think it brilliantly said that it's like these can both further enable or disable people. Like this is, I think, an important aspect for folks to realize is that yes, when we're focused on a particular physical issue, then we tend to then not, you know, think about, okay, we're going to add a wheelchair ramp, but that isn't the point or not the only point, right? There are these bigger pieces in terms of policies. Like how are we even building — what buildings can we put in the first place, right, or like how are we putting in accessibility in certain areas? But then also to your other point, like who's even included in the process of designing the policies, right?

[00:35:52] So I think also one of the bigger things you've done that I don't know that — I don't think I could do this is, you know, running for public office. But I think this is a really cool like also part of your story too in terms of in the narrative, you know, going from the idea of like learning to tell your story in a certain way kind of finding your voice, and then doing public actions around that in public service. And so this is a very interesting story, so tell us about this choice in this process, yeah. 

[00:36:11] Brooke Ellison: Thank you, yeah. So I draw this kind of parallel in the book where for many weeks, actually, I think going on two months after my accident, I didn't have the capacity to talk at all, right? I was on a ventilator. Many people don't have the ability to talk. And it wasn't until I was in rehabilitation that I was given a little device that would allow me to talk. I mean, so doing like literally find my voice, you know, it was not a voice that sounded like I did before my accident, but it was a voice that I had and have come to use I think quite effectively ever since. So like so I literally found my voice and have made as great use of it as I possibly could in the years since. 

[00:36:55] So when I was in graduate school, I was at the Harvard Kennedy School where I did my master's degree in public policy. And I took a course on leadership, and it was a very particular paradigm of leadership called adaptive leadership, which I go into great detail about describing in the book and how it would force students to really look at their position in the world, look at the kinds of challenges that society faces using the classroom as a microcosm of those challenges and find ways to be vocal about them, to talk about them, and in so doing, like understand how others might view an issue, develop allies to take on the work that needs to be done that society often tends to ignore, right, doesn't like to do the real hard work, and then find a way forward. And that class was completely transformative for me. That is where I literally found my voice as a person more than just within myself as somebody who can effectuate change beyond myself. 

[00:37:56] So I graduated from the Kennedy School in 2004, and I came back to Long Island. And I knew that there was a lot of change that I wanted to be a part of helping to make. I had started a PhD program at that time in political psychology, which was, you know, tremendously interesting and, you know, really something I wanted to continue to pursue. But at the same time, like I wanted to get my hands a little bit dirtier than what I was doing at the time. So there I was, just 27 years old, living in a community that was a two-to-one majority of the other party, right? So we put it this way, a very red district. And I said despite that and despite what people think I might be able to do, this is something that I care a lot about. So I've decided to run for New York State Senate, again at 27 years old, and talking about all the issues that actually Long Island is still plagued with, whether it's a lack of access to affordable housing or access to education or, you know, ensuring the protections for our environment. At that time, New York State did not have a state-based funding mechanism for stem cell research. That was kind of the signature point in my platform. It was an issue that I cared deeply about — still do to this day. And like I wanted to see that level of change happen, make sure that people had access to healthcare. I saw all of these really important issues that I wanted to be vocal about. At the same time, I knew that my candidacy in and of itself was going to make a strong statement in terms of who could be included in these kinds of conversations that you couldn't be. And my campaign generated a great deal of attention. It was endorsed by The New York Times and, you know, many other media outlets and highlighted on the Today show. So it was, you know, really it generated a lot of attention. I think that was really quite important for me. 

[00:39:57] The outcome of the election didn't go in my favor. But at the same time, like it put me in a position to use my voice to effectuate change in a lot of important ways. New York State ultimately did pass a very large funding initiative for stem cell research, and I ultimately sat on one of the boards associated with this initiative, and that was kind of a culmination of a lot of the work that I wanted to see get done. I've been a part of different legislative initiatives ever since, and, you know, I feel really proud of helping to change, I think, at least some degree of public opinion in terms of who can run for office and who can't and who can play a focal role in these tremendous social issues and who shouldn't. Yeah, and like I said, this is something I continue to do. I continue to advocate on different causes and be as politically active as I possibly can be.

[00:40:58] Adam Gamwell: We're going to take a quick break, just wanted to let you know that we're running ads to support the show. Now we'll be right back.

[00:41:08] It's such an interesting story. And like, I mean, again, I'm just thinking through what a challenge in terms of, I don't know, the grueling process of campaigning. But then on top of that too I think like the bigger pieces of work that you've done in terms of that is cool to see too 'cause like how this kind of pathway also opened up these the other doors. So you've got you have the Brooke Ellison Project. And again, to me too, I thought it was really interesting to kind of have stem cell research sneak in at the end as like a really interesting area, both for medical ethics, but then also like you discuss the challenges of working on boards and working and having to go to debates in terms of — people are looking for the science of, you know, this and that and like different perspectives. I mean, a very cool guest appearance by Christopher Reeve too, in terms of popping in to help tell your story. 'Cause I think even this idea like to show that like the power of being active, right, and the power of using one's voice, and then like I think that the generative change that can come from it. Obviously, it doesn't always come easy, doesn't come quickly, but I think the importance that we need to do it. And so I just wanna say thanks for pressing the button forward in this case 'cause it is I think one of the biggest challenging areas in terms of waking up United States and the world to a new form of consciousness and that sort of awareness of inclusion, right?

[00:42:10] Brooke Ellison: Yeah. This is a role that I never imagined myself playing a much more powerful one than I ever would have anticipated for my life, right? So I serve as the vice president for technology and innovation for a national nonprofit organization, the United Spinal Association, so advocating for accessibility and technology for people with spinal cord injuries and wheelchair users. Just started a pretty significant group through the Harvard Alumni Association to bring together Harvard alumni with disabilities. So trying to advance this issue as much as I can in as many circles as I possibly can with the drum that I keep beating that people with disabilities are not the weakened or the marginalized or are not to be the marginalized, are not the ones who are incapable or all of these I think stereotypes that we ascribe to disability but very much the opposite, and forced to integrate problem-solving skills and all of these virtues into their lives, kind of the epistemology that one gains by virtue of living with a disability — like these are really of value. These are really important. And until we understand disability in that, you know, in that lens and in that framework, we're going to completely misunderstand it. And these levels of, you know, of marginalization and rejection are just going to continue to perpetuate themselves. And if I can be a part of making that change, then I feel quite privileged.

[00:43:43] Adam Gamwell: Right on. Can I ask a bonus question? I'm curious. From your dissertation, it's interesting — the stem cell research in different countries in terms of how the sociopolitical systems will affect research and advocacy and policy. And so I'm really curious from that. Like what was most surprising from that research? And then like has that come to inform a bit of the ways that you're approaching some of the questions and challenges today in terms of how do we bring, you know, the personal and the scientific together? How do we bring — and kind of like be aware of the some of the, I guess, sociopolitical challenges that we might face in terms of building a more progressive society, a more inclusive society around science, around inclusion?

[00:44:16] Brooke Ellison: Right, right. Well, I mean, I think what was most surprising, right, I guess it wasn't surprising, but I think really interesting findings of my dissertation, right? So a country like Germany that is progressive on many scientific issues tends to be a little bit backward when it comes to how it has approached particularly embryonic stem cell research and that this is largely couched in deep historical anxieties about how people's lives are respected or not during the Holocaust, right? There's tremendous anxiety and uneasiness about the level of disregard that was associated with people's lives and the lack of informed consent and bioethical missteps that were taken during the Holocaust, right? Missteps is like obviously a vast understatement, but you have to understand what I'm saying, right? So any kind of rights or respect for individual and autonomy and some basic human rights were just cast aside during that time. And that has colored a lot of very sensitive bioethical thinking ever since, right? So even the potential prospects or a potential possibility that embryonic life might be considered human life, like there's a bit of skittishness around that. So there has — so that has influenced the level of policymaking in Germany, or at least historically speaking, when it comes to levels of permissibility and who, you know, how you can use embryos or how you are not to use embryos in biomedical research. 

[00:45:47] And like I think that that is an important lesson to learn, right, that we can't just be so quickly reactive to what we think is a black or white issue, that it requires a little bit more digging, delving a little bit more deeply to get to understand how people and why people feel the way they do on certain issues. And I think that was an important lesson that I learned way back when I was a student, even at the Kennedy School, right, that we can be very entrenched in our position and so much so that we become belligerent and combative when it comes to the other side, rather than saying, "Okay. Maybe there's a piece of this equation that I don't really understand. Maybe there's something that I need to try to learn before I reject it," right? So in one of the trainings that I've done, leadership training that I've done through different networks that I'm a part of, connect before correct, right? I think that that's a really important lesson that I've learned, right, how can you connect with somebody before you start to try to tell them how they're wrong or why you are right. And unless we do that, I think on a little bit more of a regular basis, then we're just going to always be at odds with one another. And then, how can progress ever?

[00:46:56] Adam Gamwell: I think that's a beautiful point and so important, you know, that oftentimes, we're such in such a reactionary moment in society right now that it's often we forget to say there's a human on the other side of that conversation, right?

[00:47:06] Brooke Ellison: Exactly. 

[00:47:07] Adam Gamwell: Or they forget that we're a human, too. 

[00:47:09] Brooke Ellison: Yeah. Exactly right. Exactly right. Who feels the way he or she feels for a reason, right? And we need to understand what that reason is. 

[00:47:17] Adam Gamwell: Yeah. No, a hundred percent. So Brooke, I want to thank you so much for joining me on the pod today. This has been a really great conversation. I learned a ton. Loved your book, and excited to share it with everybody as well.

[00:47:26] Brooke Ellison: Thank you so much, Adam. It was great to talk to you.

[00:47:29] Adam Gamwell: I want to thank Brooke Ellison for joining me on the podcast again today. This was such a fascinating, enlightening conversation. And as I'm reflecting on our conversation, as I noted up top, I'm really thinking about this concept that we are all differently abled on a spectrum, and this has really changed my perspective and thinking on how we can design a more inclusive world. And again, it's the idea that we can have designs of physical spaces where many of us may start thinking but then also recognizing that this is about mindsets, visibility, but also things that we may not see as directly, like policy, as Brooke has showed us. So there's such an important realm for us to think through in this space of how do we both bring more people with disabilities into conversations around building societies that we want. One of the main takeaways here is to just have more inclusive conversations and have people with disabilities at the decision-making table for policies, for designs, school boards, for everything that you can think of. And that is one of the biggest ways that we can, I think, make a difference. 

[00:48:27] As always, if you get something out of this episode, please share it with someone that you love. That's one of the best ways to help the podcast grow. And you can also join us on the Substack. The link is in the show notes. This is our blog newsletter of the podcast, as well as additional happenings and thoughts and reflections of anthropology and social science in the world today. So if writing is also your thing, you can get some audio from the podcast, get some writing from Substack. And as well, if you want to support the show and blog, you can do that over on Substack. If you subscribe there with a monthly donation or a yearly donation, it helps support both the podcast and the blog itself. And I want to thank those that have been able to do that so far. Your contributions make a huge difference and show me that we can do this together. So please consider supporting the show in that way. And exciting just to point out, if you're still listening, thanks for hanging on. We've got merch coming soon. There'll be cool T-shirts, stickers, mugs, all that good stuff. So I'm really excited to share those in the coming weeks. So be on the lookout for that. Another good reason to get on our Substack to check that out. 

[00:49:19] As always, I want to hear your takeaways from the episode and what this has gotten you thinking about so feel free to get in conversation with me. You can shoot me a message over email or get on the contact page at thisanthrolife.org or hop in the comments on the Substack. As always, I cannot wait to hear what you think. Thank you so much for your time and energy. It has been a pleasure to be with you once again. I'm your host, Adam Gamwell, and you're listening to This Anthro Life. We'll see you next time.