Empire State of Rights

“Look Both Ways”: The Power of Storytelling in Disability Rights Activism

• Brooke Ellison • Season 7 • Episode 6

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**ENCORE: This podcast was recorded on March 13, 2023 **
 
Renowned disability rights advocate and Associate Professor at Stony Brook University, Brooke Ellison, PhD., discusses her journey as an activist, the importance of inclusivity and accessibility, and her latest memoir “Look Both Ways”.

This episode is dedicated to the memory of Brooke Ellison.

*Show Notes*
https://www.brookeellison.com/
https://www.stonybrook.edu/commcms/bioethics/people/ellison.php

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(The views, information, or opinions expressed during the "Empire State of Rights" podcast are solely those of the individuals involved and do not necessarily represent those of Disability Rights New York.)

- This is Katrin with Disability Rights New York. Welcome to our podcast, Empire State of Rights, where we bring you information on the most relevant topics regarding disability rights and advocacy. Today we welcome Brooke Ellison, PhD, Associate Professor at Stony Brook University. She is a renowned disability rights advocate, and Brooke is also the Vice President of Tech Access at the United Spinal Association. She's here to discuss her journey as an activist, the importance of inclusivity and accessibility, and her latest memoir, "Look Both Ways". Brooke, it's so nice to have you here today. How are you?

- I'm great, Katrin. Thank you so much. The pleasure is truly mine. Thank you.

- Well, if you can, let's start talking about you first. You have so many wonderful things in your resume, but I'd really love to hear and talk to our audience about you and how all of this started.

- Sure, absolutely. So I grew up here on Long Island, and as a child my life was very similar to many other children's growing up in suburbia. But when I was 11 years old, I was walking home from my first day of seventh grade and I was hit by a car while walking home, crossing a major highway here on Long Island, and that accident left me with many injuries. But the one that was sustaining and still impacts my life to this day, was a spinal cord injury at C2, C3. So very high up on my spinal cord, cervical spine, second and third vertebrae, which left me paralyzed from my neck down and dependent on a ventilator to breathe. And obviously, that was a tremendously, transformative event in my life that forced me to reevaluate how I did everything, how I live my life, and how I understood myself. I returned to school exactly one year after the day of my accident, after being in the hospital for about nine months, six weeks in pediatric intensive care, and then seven and a half months in rehabilitation. And I committed myself and my time to my education to make sure that I could remain a vital and active part of society. That was what was truly most important to me at the time. And so I went through junior high school and high school and ultimately went to Harvard, where I did my undergraduate degree in cognitive neuroscience and really learned to re-understand myself. It wasn't until I was away from my home and my community that I had to articulate an existence that was different than I think many other people's lives, and to claim ownership over a narrative that had frightened me for quite some time. And then did my master's degree also at Harvard and published a book in that duration. And now, I am a PhD at Stony Brook University. And I study disability, I study medical ethics, I study health policy, kind of a whole gamut of health related, the sociocultural aspects of healthcare. And also serve as the Vice President of Tech Access for United Spinal. So this is a very kind of on-the-surface summary of a bit of my life.

- We're getting to hear your CV, and of course, that certainly is not anyone's full personhood. And you talked about this journey starting with you as an 11 year old, and going through junior high and high school and then to Harvard. And so, as we talk about your journey as a self advocate, is there a point in time that you remember that there was something that you either needed to do or you needed to change? And to change that thought processes, self advocating, as you were going through the rest of your education in junior high, high school and college? Is there a point in time where you can pinpoint and say, "This is what has called me to this work?"

- Right. Well, I think immediately after my accident, I knew that my life was going to be very different and at that point, I knew that I had to be a self-advocate. I knew that I had to be much more aware of how I interacted with people. I knew that I had to be able to vocalize my concerns and my needs in ways that I never had to before. When you live with quadriplegia, you can't simply access things that everybody else can. So you have to be more vocal in how you talk about your own life and what you need. What I think was a very important transition for me was my transition from self-advocacy to disability advocacy. That was something that I needed to understand the distinction between. So I think the transition from self-advocacy to disability advocacy happened when I was in graduate school. When I was studying at the Harvard Kennedy School of Government, I took a course on leadership, on a specific paradigm of leadership, adaptive leadership, that forced me to understand my own role in the world and how central my voice could be in changing what I thought needed to be changed in the world. The class was very immersive and interactive in nature, such that if people, if students in the class had to really interact with others and talk about issues that maybe they felt uncomfortable talking about, maybe to see themselves as being an active participant in, and really challenging themselves to talk about problems within society. And it was in that class that I talked about my concern over stem cell research and the nature of how people with disabilities were valued or not valued in society. And this was really a topic that had took me a very long time to feel comfortable talking about. I had, for a very long time, distanced myself from disability. It wasn't something that I felt I wanted to associate with. I thought that it was an aspect of my identity that made me weaker or less valuable. And it wasn't until I took that class and was in that environment that I understood how objectively and fundamentally wrong that understanding was, how disability may be a much stronger person, made me a person who could understand many different parts of humanity that I didn't understand before. That it introduced into my identity, tremendous leadership skills like problem solving, like creativity, like resilience. And that those were tremendously valuable. And I wanted to make sure that everybody understood how vital those qualities were to my life and to the world. So that, I think, was a very important transition for me to make. And that has been my purpose ever since, to make sure that these ideals and these values are recognized and seen for what they truly are, and people with who live with disability can be as such, equally valued.

- I think it's so interesting that as you started to talk about this, you talked about students who happen to be in this class that maybe hadn't been very comfortable or some of this made them very uncomfortable. And I think as, even though we're talking about you as an advocate, as an educator, really, it also feels like that may have been the moment you stepped into your role as an educator because truly, and you and I have had the pleasure of talking before, the ability to see and to have exposure to people that are different than us gives us the ability to share experiences and educate one another, which... It sounds like this class, in and of itself, was that, however, there's more to that class than just the curriculum. And so, talking about you as an educator, did you feel that transition from self-advocate to educator was one that maybe you knew early on in your college career that you wanted to take part in? Or did it come, did it come later when you were doing your masters?

- Yeah, I think it was an evolution that I needed to undergo to get from a position of my own discomfort to one of empowerment. And I think that was a real central take-home message of this class as well, that not only did I need to feel comfortable talking about these things with my peers. I needed to feel comfortable talking about issues related to disability and to myself and to other people's lives in a much broader audience. There was a world that also needed to be changed, not just the people who were sitting in the classroom with me. And I don't think that I would've ever felt the degree of empowerment necessary to do that before. Even before my accident, talking about just any opinion that I may have had, it really wasn't until that class that I felt, "My goodness, I have many things that I need to say and a conversation I need to contribute to." So much so though, that actually, after I graduated from the Kennedy School, I decided to run for a public office. And I took on a number of different policy positions on a gamut of issues, but one of the central ones was that people with disabilities can and should be seen in all these different social circles. That the voice of somebody with a disability is a valuable one and it needs to be heard in political circles and legislative circles and all the different decision making bodies. And I wanted to make sure that that was, that people were aware of that. And prior to my experience, either at the Kennedy School or even living with a disability, I don't think I ever would have felt that sense of purpose and that sense of empowerment. And I have carried that through to all the different things I have done since, including as an educator, as a professor. And how I engage with my students and the kinds of courses that I teach, and the kinds of messages that I integrate into the lessons that I teach as an instructor in medical ethics. And this is a conversation that I think is a really important one to have. Medical ethics and disability are often at odds with one another. These two fields don't necessarily see a lot of issues related to disability in the same way. And to be a person who lives with quadriplegia, who has experienced many of the gut-wrenching, life-changing decisions that medical ethics deals with to actually have survived them, I think is a quite unique and valuable voice to be heard. And I think my students really gain a lot from having me as their instructor, as somebody who has seen both sides of these questions.

- I think that is... I'm sure that the level of expansion of these topics with your students is invaluable. And also, thinking of whether it's stem cell or mathematical ethics, these are two areas that are really, they have a fine line around them, where only certain things are associated with both of these topics. And having the class and having your messages weaved in through there is really an expansion of the topics themselves. And so, I find that to be one of the areas that, whether we're talking about local laws, state laws, federal laws, these are things that these topics that are often, they're really centralized on one aspect of the subject matter itself, and there's so much more. So thank you so much for your candor on that because it is so relevant to everything that we see happening today. These are not one-note subjects. They are not just about one specific topic. And so, as we look at your global voice and how you really have been communicating in a very broad way across many audiences, your first book, "Miracles Happen," it was adapted into a film directed by Christopher Reeves. Let's talk about this milestone, the platform that you are on with your story, your book and this movie. And how did that impact or even inform some of the information that maybe you brought forth, whether it's your classes or in conversations that you have? Did it change anything in the way you were delivering your message?

- Sure. So thank you. Well, yeah, I think you touched on some really important, important points in that question. So right now, I think we're all kind of breathing the loss of Judy Heumann and the impact that she has had on so many people's lives. And policies within which we are all very fortunate to live right now, whether that's the Rehabilitation Act of 1973, or the Americans with Disabilities Act. And what I think she was so central in driving home is that people with disabilities are not simply recipients of policies that affect their lives. They need to be as centrally a part of the conversations that affect our lives as everyone else, if not moreso. So the nothing without us, "Nothing about us without us" mantra that should and has been shifted to just, "Nothing without us." Because we are equally citizens of the world in our communities just as much as everyone else. So I think that that was tremendously important and something that has been very deeply integrated into how I have approached my life and my work over these past decades. So yes, when I first wrote, "Miracles Happen," which was my first book, I wrote it right after I had graduated from college. It was kind of a collective endeavor by members of my family and me trying to tell our story of the struggles that we had encountered and some of the difficulties we had to undergo in my transition from the day of my accident to way back in 1990 to when I graduated from Harvard in 2000. And it was a very personal, and I think poignant story that shared a very valuable message of what it means to overcome a devastating challenge, like somebody, a family member being hit by a car and understanding her life in terms of disability like that. That was, I think, a very important book and forced me to again take ownership over a narrative that was frightening to me for quite some time. And as you mentioned, that book became, "The Brooke Ellison Story," which was Christopher Reeve's last film, the last film that he directed before he passed away way back in 2004. And that film and this book is really, has been shared to audiences around the world in these, I guess now going on, 20 years. And every time it is shown in a country or to a community, I receive emails from people from that part of the world. And they share just deeply personal stories with me about how their lives were impacted by what they had seen. And that is just so impactful for me. I never would've imagined my life having that kind of role or playing that kind of role in other people's lives, and that is so valuable to me. I think that's really, I think that's very important in how we share our lives with others and kind of give them an ability to carry on when they think that possibly it's too difficult to carry on, and that is... I never would've imagined that gift coming out of my life had I not lived with disability for these past 32 years. I don't think that ever would've happened for me. And I feel very thankful. I'm very privileged as a result of that. And I know there's a sense of responsibility that comes along with that, something that I have deeply ingrained or associated with my identity. That if I can live my life in such a way that other people can gain a sense of purpose or a sense of empowerment as a result of it, then I feel like I will have accomplished something very valuable. So, yeah, no, all of these things are so much a part of who I am today.

- Well, and so you talked a little bit about this in the beginning of your answer. And you talk about how your family also contributed to this book. And I think that's one of the things that really jumped out at me when I started just to even read the beginning of the book. And I had this real sense that this was not a singular event that happened to a singular person. That as we all go through periods of time in our life, there are a lot of other people that are impacted and also impact our story along the way. And I really felt that the way that you described that and really including how your family, the community, how there's a sense of support as well as there's a lot that everyone needs to learn and go through as this process and this journey started with you. Do you feel that that type of, that type of narrative is really... I don't wanna say, 'is told,' but 'is shown,' or 'is viewed and valued,' not just currently in the media, but historically, we've talked about the way that stories are told about people have been impacted in some way or another with disability. Or that disability then becomes the central focus of a narrative in a way that isn't necessarily empowering. Talk to me a little bit about that, about both the whole community, whole family experience, as well as how it is that the narrative that we're discussing even today is changing in a way that... Do you feel that it's going in the right direction? I think there's a lot more work to be done, but what is your feeling on that? Talk to us a little bit about that.

- Yeah, I think that's a really important question. So I think we live in a society in which self-reliance and self-empowerment are kind of the ideals of the day or of the time or of the culture. That we need to be independent, we need to be self-motivators or picking ourselves up by our bootstraps, or that kind of idea, when I think of that is just entirely wrong. None of us gets to where we ultimately end up on our own. And I think to view that, to fail to see that I think is just a mischaracterization of the nature of the human experience. So I've done a lot of work on the concept of hope and how I understand hope to be a very action-oriented concept, that understands the difficulties that we face. And it doesn't just ignore them or dismiss them, but finds a way to live life nonetheless, despite them or even because of them. And so much of that ability, a lot of it is, is found within ourselves for sure, but an equal part is of the product of the supports that we find around us. I certainly could never have gotten to where I am today without the role of my family, my mother, first and foremost, and my parents and certainly my friends as well. And for me to deny that would be to completely mischaracterize my life. And I think far too frequently, people view their need for other people's health as a source of weakness. And that I think has fostered the idea that people with disabilities are weaker than others. Because they need the help of other people to get through the day when that's just completely wrong. Every single one of us needs to have the support of others around us to get to where we need to be, to continue to keep us motivated, to give us a sense of allyship in the struggles that we face and the work that we want to undertake. And that has certainly been the case for me. And to whatever degree I can evangelize that message, I feel very proud to be able to do. Because I know that were it not for the role of other people in my life, I would never be where I am today. And I think that was one of the biggest messages that I could convey in Miracles Happen. And how that coupled very closely to the speech that I gave at the end of my corporate career as an undergraduate, kind of that the message of the speech that I gave at my graduation, that we all have a role to play in each other's lives, and we should never take that as less than extremely seriously.

- And you use the word, 'evangelize,' and I wanna just say also, through all of the information that I've been able to read about you and hear your writing style and the way that you have broken down, not only your experiences, but the way to convey and the emotion of of your your writing is so powerful.

- Thank you. And the pillars of hope and your description of the word, 'hope,' really just landed on me in such a powerful way. The way that you talk about it as an elusive, almost unattainable notion, as well as something that is so necessary and is so able to inspire. And we did talk a little bit about this before, and I think it's such a big topic when we talk about language. Language is so important. Words are important, getting it right is important. And when we take a word like, 'hope,' when you have taken the word, 'hope,' and really expanded it and exposed it for a lot of different ways to view it, experience it, behold it and share it, is very powerful. And so we talk about the word, 'inspiration,' or we talk about, 'empowering,' or we talk about how someone inspires us. And we've talked a lot about how there's so many negative connotations about the word, 'inspire,' with the disability community. And how there's either how it's written about, how the movies are made, about this 'inspiration porn,' as the term is being coined now. And how that is really also selling that word short. Inspiration is not just a one-dimensional word. So share with our audience our conversation about that. I loved the way that you talked about the word, 'inspiration,' as well as, 'hope,' but also how words are so important and being able to expand on them as the organic beings that they are. So please, share that with our audience.

- Absolutely. So this is a question and an idea that I had given a tremendous amount of thought to, and delve pretty deeply into in my latest book, "Look Both Ways." And something that I wanted to explore and kind of challenge myself to think more deeply about. So yeah, as you mentioned, the idea of inspiration has been maligned, or has been taken at least with pause among the disability community. And I understand the rationale behind that, that people don't want their lives trivialized or to be sources of comparison for other people's lives, or to make other people feel better about their own lives, or this poor disabled person. And yeah, I can evaluate my own existence based on their sorry existence. All of these kinds of really, I think damaging, understandings or interpretations of disability that come along with people calling others, "Inspirations," just because they're going about their lives. I understand that fully and I would not ever want my life trivialized in that way either. But at the same time, I think that one of the greatest gifts that we can give each other is to allow other people to find meaning in their lives or find an ability to continue with their lives when they know that other people have done the same, when they know that other people who have lived with challenge in their lives can continue, can find a sense of purpose, can take what is most assuredly a difficult set of circumstances or a more difficult set of circumstances than many other people live with. And say, "I'm not gonna let this stand in my way." And other people finding a sense of realization as a result of that, or inspiration, if you want to call it that, as a result of that, I think that is one of the greatest gifts that we can give each other and something that shouldn't be undervalued.

- Agreed. And in your 2015 Ted Talk, "Pillars of Hope," that we're just talking about, which we're going to put all of these links in the notes of the podcast . And your acceptance speech of, "The Patient as the Professor," and you just talked about your speech, "A Shared Confidence," there's something that I see as a thread throughout them. And really the voice on what it means to have a first person account and experience brought not just to public policy, not just to government, not just to our, our dinner tables. Our experiences within our community, our schools.

- That's right. There's so much there. Talk a little bit about how sharing our experiences, and you've had the ability to do this on world stages, I mean, the movies, in your Ted Talks, at Harvard graduation, where it's, we're able to see that still, now. There's that level of it, and then there's also the dinner tables. There's also the classrooms in high schools around the country and middle schools. Talk about how important it is for the shared experiences, the stories, and the voice of lived experience to be told.

- Yeah. I think that's just critically important. So if people don't hear from lived experience, they're going to make up their own reality on their own. And I've seen this happen so frequently. So when it often happens, if I am in a store or just out in public, there might be a mother with a child. And the child might look at me or wanna ask questions, or look at me with some degree of inquisitiveness and the mother might turn their child's head away. "You shouldn't be doing that. You shouldn't stare or you shouldn't ask questions." And I think that that's unfortunate. I think that the more that people know, as young as they can know it, the better off everybody is. Because that child who doesn't get to ask a question is going to write some kind of story in his or her own head about what they think a wheelchair is or what they think a ventilator is, or why they think I need to use a ventilator, or a wheelchair or why I need some help to get around. And I think that is unfortunate, and I think it's not just relegated to children. People do that as well, adults do that as well. And there's, I think they feel like they should not ask questions and then as a result, come up with the, draw the wrong conclusion. And I am very, very much of the mind that people with disabilities need to be included in as many conversations as are had. That their voice is extremely important, that the decisions that come out of conversations, especially ones that happen in the political circles, but certainly elsewhere as well, they need to have a disabled viewpoint or vantage point integrated into them to see a challenge from a disabled lens. Otherwise, they're going to be missing that perspective. And that is, just I think, a grievous error. We live in a world that has been built without disability in mind. And as a result, we still have buildings that people with disabilities can't get into, or can't access as effectively as others. We have policies that affect our lives, that have not been thought of with our needs in mind. We have modes of transportation that have not been designed with people with disabilities in mind. And that, I think, needs to change. And a lot of that I think, is the product of failing to understand, people with disabilities as having a valuable voice to contribute. And that I think is just grievously wrong. So that has been kind of how I have structured my life, that I want to put myself in as many positions and as many decision making settings as I possibly can, settings of tremendous import, so that those who are making decisions can actually see it from a different point of view. And that my words can help carry the message of many others who may not necessarily be in those circles, who live in circumstances similar to mine or who live with disability in general, and how I can help shape a conversation so that we're not being dismissive of people's lives. And that has been a tremendous gift for me. And I'm very much of the mind that if I can bring others along with me, if I can help open the door to opportunity for others who live with disability, then, my goodness, what a tremendous purpose in life.

- You talk about the difference between children and adults and whether it's the question or the inability to to really even ask questions. Something I hear a lot is, "Well, I'm not really sure of what to say," or, "I'm not going to use the right words and I'm going to offend someone." And of course, I think, those of us who work in this industry and community think, "Well, if you're unsure, find some resources. Here are some resources, educate yourself." And we are in so much a culture of political correctness. And again, I said, "Words matter," I think they really matter.

- Mm-hmm . I am definitely passionate about that. And also, ask questions. And so can you speak to that a little bit? The idea, and it mostly comes from adults, I will tell you, is, "I don't know what to say. I don't wanna use the wrong words." And it's a pervasive thought. So what would you say in terms of that? How would YOU respond?

- Right, exactly. And I see this consistently and have for many years. And I think people are, like you said, are afraid of using the wrong word, don't really know what to say. They're afraid of embarrassing themselves. So they expect the least out of people because it's easier to expect the least rather than trying to overestimate somebody's ability. And then, ultimately, embarrassing themselves if they feel like they're not going to get the reception that they would have from somebody else. So all of these things, I think, flood somebody's head before they have an interaction with an individual with a disability. I think that's just, that's really unfortunate. So as you mentioned, just ask a question. Do a little bit of fact finding. It doesn't take very much to just kind of educate yourself on the right words to use, the right kind of gestures to make. But at the same time, we're all human beings and we're all going to make mistakes, and there's nothing necessarily wrong with that. If you do that out of malice or some kind of inappropriate intent, that's one thing, but everybody makes mistakes. If people refer to me as, 'handicapped' or refer to me as, 'crippled,' and that has happened on more than one occasion. And it's important for people to ask the right questions before they make assumptions. And it's also important for people who live with disabilities to also say, "Okay, wait a second. Maybe you might wanna rethink how you phrased that." Or, "What you said was hurtful, or perpetuate stereotypes that are not accurate." I think that is very much incumbent on everybody to help shift this conversation. I have done quite a bit of writing on the topic, both journal writing for academic journals, as well as more popularly read op-ed articles and things of that nature. And I think all of that helps to inform people. And provides people with another source of information so they're not feeling like they're gonna make a mistake or they don't feel like they're without a safety net. We're in a time of immense growth and I think learn.

- So I love the 'safety net' term. I think that's a great way to look at it. And also, your analysis of the embarrassment. And embarrassment of course comes down to weakness again. "If I don't know everything, then I'm not going to say anything." And so, I so appreciate your feedback on that. I feel like we could probably talk about a bazillion things and spend another two hours on this podcast.

- I know, right?

- I really wanna get to your exciting news, which is your latest memoir, "Look Both Ways." And this publication, as I understand it, also acts as a sociological analysis on public policy regarding disability. Let's talk about that and why you decided to write another memoir. I cannot wait to read all of it. And talk to us about what this book means to you. And is there a difference between this book and your first, as far as your reason for starting or... I say that even as a writer myself when someone asks me, "What was your reason for writing that?" Sometimes I just am writing because I, it feels like it comes to me. So tell me a little bit about where you came to this decision to write this second memoir.

- I think you're exactly right. Sometimes you're just struck with some, almost like a burning need to get something down. And that was the case for me. So I can just back up a little bit. After I wrote, Miracles Happen, that was, it's hard to believe you over 20 years ago now, I knew that I wanted to write another book. And I wasn't sure exactly how I wanted to structure it, if it was going to be similar in nature to Miracles Happen and that it would be chronicle events in my life. Right around the time of my 40th birthday, I became quite ill. I developed a pressure ulcer that really put my life at risk. And it was at that time where I said to myself, "Now's the time. If you don't do it now, you might not ever have the opportunity to do it again." So the summer following my 40th birthday, I squirreled myself away in my bedroom. And I said, "What are the most important things that you want to share with the world?" So it started with you some kind of background about my life and why I thought I was in the position to tell this story. And then from there, I spoke about some of the frustrations and difficulties that I needed to undergo and learn to deal with after my accident. And I use a number of chapters dedicated to that, to those kinds of questions. And then, that was not the message that I wanted to leave. That was not how I wanted my life understood, just in terms of difficulty. And there are immense lessons that I have learned as a result of living with disability, tremendous virtues that I have come to incorporate into my life, whether it is hope or different understandings of love, or how to exercise leadership, or how to play a vocal role in important conversations. All of these things came out of living with disability. I could never have had these understandings were it not for the difficulties that I encountered before that. So I wanted to make sure that that was deeply incorporated into the book. So that's in the entire second half of the book. And this book is, I think, touches on all the important things in my life. All the important realizations I have come to, all the important lessons and skills that I've developed over the years. So it really means everything to me. It is what I think I understand to be my most important contribution to the world. And I feel really quite proud of it. And like you said, I could talk for hours and hours and hours about disability and about how I understand disability and how I have changed over the years to know it for what it is, rather than for how I had been taught it was, as a source of weakness transitioned into a source of strength and value. And I can and I do talk for hours at a clip about those things. And I wanted to make that message as, I guess, as central as I possibly could in this book. So that somebody who read it could say, "My goodness, maybe I had a different or incorrect understanding of what disability means, and maybe I don't have a reason to be afraid of it. Maybe I need to reevaluate how I appreciate people with disabilities who I encounter, either people I work with or people in my community, or people I see in media, in movies or on television. Maybe I need to be a part of how society needs to shift its own thinking." If this book does that, then I feel quite, quite proud.

- And the last time we talked, you talked about what are the lessons you learned, or rather, something that you came to. And I don't remember if it was during the writing of this or it was part of the writing of this, where you talked about when you were able to make the difference between the trauma of the event and your journey afterwards. I found that part of what we had talked about to be so powerful that as you looked at and evaluated your journey after 11 years old, that separating the two things was not just a part of your growth and healing, going from 11 to 40. But how that is really such a universal takeaway that there are parts of our lives that are going to have the moment impact. And then there is the more. Can you talk a little bit about that? I thought it was such an amazing part of our conversation and really again, landed on me in such a profound way. I would love for our audience to hear more about it.

- Thank you. Thank you, Katrin. I appreciate that so much. Yes. For many of us, when we undergo a tremendous transition in our lives, it's a result of some kind of traumatic experience. And for me, for many years after my accident, my disability was inseparable from the trauma that created it. I could not understand my disability in terms other than the trauma that created the disability for me. So that's why it was so fearful. So that's why it was so traumatizing for me. I could only understand it in terms of being hit by a car and all the devastating injuries that I sustained. All the difficulty that my family had to undergo in order to be able to move forward. The upheaval that my sister and my brother encountered in order to move forward with their lives. Literally, you're reconstructing our house so that it was accessible for me that I could live in it. And the time that I lived away from my family, my mother and I lived in New Jersey when I was in rehabilitation. And so all of these things were completely inseparable from my disability. And it took me quite some time to say, "Okay, I need to be able to separate myself from the trauma that I experienced."

- And so, Brooke, as we're talking about really you making the distinction between the event itself as well as your journey, let's talk about some of the more difficult chapters of this book. Were there some chapters that were particularly more difficult than others?

- Yeah. Well, I think that there was... Every chapter was difficult. Every chapter forced me to be introspective and to be a kind of very self-analytical, and that was difficult. It forced me to think about and talk about things that I never really forced myself to think or talk about before. That was something I was very intentional and very deliberate about. But I would say the hardest chapters to write were the chapters on my family. So for a long time I almost suppressed thoughts about how deeply affected my family was by my accident and the kinds of transitions they underwent. It was too painful for me to think about so I forced myself to do that. And I remember crying in my bedroom as I was writing it, so that was very difficult. And I wanted to get some insight and input from my sister and my brother and my parents before writing that to make sure that I was accurately capturing what they thought or how I thought they felt. And how I, as an adult now, can look back. And some of the misunderstandings I may have had about my own life and theirs as well. So that was very difficult. The chapter I devoted to love, that was very difficult as well. We don't often think about disability and love, or disability and sexuality in the same conversations. They're kind of two different things that people often don't want to think about together. And yeah, that was something I forced myself to talk about and to be very candid about that was very challenging and very emotional for me to write. What I think was probably the most difficult section for me to write was a section that I wrote before I wrote anything in the book. It's the end of chapter four. It's kind of the, 'I want' section of the book, where I talk about all the things that I want versus the things that I need in my life. And how coming to an awareness of the distinction between those two things has been so difficult. And talking very candidly and in a very upfront manner about all the things that I would love to be able to do, but can't. And how a lot of that inability is not necessarily because of my disability, but because of how we structure the world and the things that we implement that either enable or further disable an individual. So that was really difficult. That was very... It was almost an essay that I needed to get out of my system on its own before I even knew that it was going to be included in this book. So that was probably the hardest part.

- It sounds like writing the end of that chapter really, maybe opened the door to the rest of the vulnerability that you really had to get to, to write the other more difficult chapters. And I feel like when reading your work, there is such a sense of yourself and your voice in it that for you to truly gift that experience to your writers, to your readers rather, is so truly selfless. And really, I mean, I really feel speechless when I read what you've written.

- Thank you.

- Because it is from such a point of sharing that not a lot of writers I think are willing to go to. So I truly appreciate you gifting we readers with your experience and your life, because it is, it's something that it has given an invaluable perspective to, even how I'm reading and looking at things now. So truly, thank you, Brooke. It's amazing work.

- Thank you.

- Thank you, Katrin. That means so much to me. And I was a little afraid, actually, and especially right before the book came out. I was saying to myself, "My Gosh, do I just pull the plug on this? Do I just pull this away completely?" But when I was writing it, I said, "If you're going to do this, do it to its fullest extent." And that's even what generated the title, "Look Both Ways." I know it's a very kind of heavy hitting title and could easily be just thought of as the warning that you give to children before crossing the street, which is kind of what I think is a surface level understanding of what it might mean, but it's much deeper than that. And at first I was thinking to myself, "Well, is this too much? Is this too heavy?" But then I thought about the contents of the book and I was not pulling any punches. I didn't want to. I wanted to make sure that I was as candid and as honest and transparent with myself, even sometimes at my own expense if it could hopefully convey something meaningful and something that would affect other people's lives. I really, I appreciate that so much that you found that to be meaningful for you and I hope others do as well.

- Absolutely. And we will be putting your websites and the social media tags and all the places to get the book and the notes of this podcast. And as I said, I would love to talk to you more. I think we could talk for days on end, so I can't wait to have you back to talk about some other things.

- Oh, I'd love to.

- Yeah. And before we sign off THIS time, is there anything else that you want to share with our audience today?

- Oh, well, again, thank you, thank you. And you know, just, this is such an important life journey for me and transition for me and quest now for me that I feel so privileged to be able to share my life with all audiences, but particularly with your audience. And I hope that everyone finds something of value in it. So thank you for your time today. Thank you for your listeners. I hope to be able to share my life to a deeper extent with everybody.

- Well, thank you so much. Truly a gift in your words and your written content, but also getting to talk with you today. I cannot wait to talk to you again.

- Oh, I look forward to it, Katrin, thank you so much.

- [Announcer] Look Both Ways is now available on Amazon, Kindle, and Barnes and Noble.

Empire State of Rights has been brought to you by Disability Rights New York, your source for disability rights and advocacy. If you enjoyed our program, make sure to subscribe, like and share this post. The video for this episode is available on our YouTube channel, with closed captioning and ASL interpretation. If there is a subject you would like us to discuss, please email podcast@drny.org or comment below. For more Empire State of Rights, follow us on Apple Podcasts, Spotify, and YouTube.

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Katrin Haldeman

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