ATU621 – Brooke Ellison, PhD – Part 1

Hello everyone. I am Brooke Ellison. I’m an associate professor at Stony Brook University and vice president of Technology and Innovation at United Spinal, and this is your Assistive Technology Update.

Hello and welcome to your Assistive Technology Update, a weekly dose of information that keeps you up-to-date on the latest developments in the field of technology designed to assist individuals with disabilities and special needs. I’m your host, Josh Anderson with the INDATA Project at Easterseals Crossroads in beautiful Indianapolis, Indiana. Welcome to episode 621 of Assistive Technology Update. It is scheduled to be released on April 21st, 2023.

On today’s show, we’re going to have part one of our interview with Brooke Ellison. Brooke is a writer, a professor, well, a whole lot of things, and I think you’ll really hopefully, enjoy this interview just as much as I did. It’s one of those where you get to talking, and you really don’t realize just how long you spend. So we did have to split this into two episodes. Hopefully, you’ll enjoy this interview just as much as I do.

If you do enjoy this interview, or you have other comments, or questions, please do reach out. You can email us at tech@eastersealscrossroads.org, or call our listener line at 317-721-7124. But right now, let’s go ahead and get on with the show.

Maybe you’re looking for some new podcast to listen to. Well, make sure to check out our sister podcast, Accessibility Minute and AT FAQ, or Assistive Technology Frequently Asked Questions. If you’re super busy and don’t have time to listen to a full podcast, be sure to check out Accessibility Minute, our one-minute long podcast that gives you just a little taste of something assistive technology based so that you’re able to get your assistive technology fixed without taking up the whole day.

Our other show is Assistive Technology Frequently Asked Questions, or AT FAQ. On Assistive Technology Frequently Asked Questions, Brian Norton leads our panel of experts, including myself, Velva Smith, and our own Tracy Castillo, as we try to answer your assistive technology questions. This show does rely on you, so we’re always looking for new questions, comments, or even your answers on assistive technology questions. So remember, if you’re looking for more Assistive Technology podcasts to check out, you can check out our sister shows Accessibility Minute and AT FAQ, wherever you get your podcasts, now including Spotify and Amazon Music

Listeners, I’d like to invite you all to our Web Accessibility Webinar for Developers on May 10th, 2023. Renowned web accessibility professional, Dennis Lembree covers an array of topics for developing accessible websites. The training begins with disability and assistive technology basics, and an overview of guidelines and laws. Main topics include content structure, images, forms, tables, video, CSS, and ARIA. Techniques on writing for accessibility and testing for accessibility are also covered. If you’re interested in registering for this free training on Web Accessibility for Developers, please click on the link down in the Show Notes, or visit eastersealstech.com.

Today listeners, we welcome to the show Brooke Ellison. Now, Brooke is a writer, advocate, professor. I could go on, but I feel that perhaps she can do a better job of introducing herself, her work, and her background to you. So let me go ahead and please join me in welcoming Brooke to the show. Brooke, welcome.

Thank you so much, Josh. It’s a pleasure to be on. Thank you for having me.

It is a pleasure to get to talk to you today.

And before we get into talking about your work and everything else, can you tell our listeners a little bit about yourself and your background?

Absolutely. So you talked to me today, and I am on Long Island, so right outside of New York City, about an hour and a half outside of New York City to provide some context. And this is where I grew up. And for the first 11 years of my life, my life was very similar to many other children growing up in suburbia. But when I was 11 years old, I was walking home from my first day of seventh grade, and crossing a large, significant highway on Long Island in order to do that. And in that process I was hit by a car. And that accident was, obviously, quite severe and left me with many different injuries to my body.

But the one that was sustaining, and has affected my life since that time was a spinal cord injury very high up on my spinal cord, C2, C3, so the second and third cervical, leaving me paralyzed from my neck down, and on a ventilator to breathe. And that was kind of the pivotal moment in my life, the moment where everything changed.

And so, I spent a long time trying to re-understand my life and understand it in terms of disability, and how I was going to integrate disability into my identity. I was very focused on returning to school. That was a priority of mine, so I spent nine months in the hospital, a total of nine months in the hospital, six weeks in pediatric intensive care, and then seven and a half months in rehabilitation. And it was in rehabilitation that I first was exposed to different kinds of assistive technologies.

I didn’t have a full sense at that time how deeply integrated assistive technology was going to be in my life moving forward. But I just had a very kind of superficial introduction to meager ways that technology was going to be incorporated into my life, whether it was a ventilator, or a power wheelchair, or even very modest technology like a speaking valve that would allow me to speak, ways to interface with computers. Even this was way back in 1990/1991 when technology was not what it is today. So I was exposed to a Morse code interface to interface with my computer that was powered by sip and puff. So at 11 years old, 12 years old, I was learning how to use the Morse code alphabet, and to use that to type individual letters. So this really kind of meager stuff, but it was essential for me to build my life moving forward.

And it was that technology that allowed me ultimately, to return to school exactly one year to the day of my accident. And that became the central piece by which I could continue to move forward with my life. I didn’t know that, really at the time, but that was really how I was able to move forward with my life. So I returned to school in eighth grade, so exactly one year to the day of my accident and focused my time on my education. So time that I had typically spent in extracurricular activities, I then directed towards my education. And went through junior high school, and then high school, and graduated and went to Harvard, where I did my undergraduate degree in cognitive neuroscience.

And then, my master’s degree following that in public policy I did at the Harvard Kennedy School of Government. And then, went on to get my PhD in sociology, and the sociology of science and the ethics of science. And my life has taken many different twists and turns ever since. I rand for public office when I was just 28 years old, 27 actually. And I wrote a book which was, ultimately, made into a movie by Christopher Reeve. The Brook Ellison Story kind of showcased my life in various ways, and has been shown around the world. So my life has been very full, and very rich, and so much of that has been because of the technology that I’ve been able to integrate into it. Were it not for technology as a mechanism to bridge the divide that disability can sometimes create in people’s lives, I don’t know where my life would be right now.

You give a lot of credit to the technology, but in doing this long enough, I’d have to say your drive might have had something to do with it as well. Technology could only go so far. So I’m glad you give it all that credit, but I do think some of it has to be the drive, and determination there.

And we’re all very happy that you were able to make it back to school there in that year because-

Thank you.

Seeing what all you’ve accomplished, and we’re going to talk about a lot of that kind of stuff today. And I’m sure as we go, we’ll talk more about the aspects of your life, and your work. But I wanted to start with your work as the VP of Tech Access for the United Spinal Association. And if you could start off, just tell us what is the United Spinal Association?

So United Spinal, as it’s more colloquial called, is a non-profit organization that’s been around for many years now. Actually, I don’t know the exact number. I should know that, but I don’t know the exact number. And it serves the needs of previously people with spinal cord injury, but now wheelchair users generally speaking. And provides a plethora of resources, and support services for especially people who have been newly injured, but really people from all different backgrounds giving them assistance when it comes to social supports for those who have been injured, or are going to be discharged, the hospital, what kinds of services you need to put into place, how you need to modify your home, what rehabilitation means, it looks like. And then, there’s a division that’s dedicated to technology. And this is actually a relatively new component of United Spinal, it was just started about three years ago to looking at how technology is integrated into the lives, and should be integrated into the lives of people for wheelchair users in general, people with spinal cord injury, and neurodevelopmental disorders specifically.

Nice.

And can you tell us what are some of the innovative assistive technologies that have grown out of this collaboration in you working with the engineers there, and other individuals with disabilities?

Sure. So my position is really almost as a liaison between the organization and the people that it services, and the technology industry, so members of big tech. So United Spinal doesn’t necessarily have its own engineers, but liaises very collaboratively with members of the tech sector. So my position revolves around that. So I have conversations with tech users, people with spinal cord injury and other kinds of neurological disorders, getting a sense of what they need, what kinds of technologies they use, how it can be incorporated into their lives, where the gaps lie.

And then, where innovation is existing on the tech side. So there are many, many tech companies right now that understand the importance of assistive technology as its own issue, but then also how to make their own technology that’s existing, that’s kind of for everybody accessible to people with disabilities. So they understand technology on both of those fronts.

But they don’t always have a firm sense of what people need. There have been many pieces of technology that I have been exposed to over the years that just were, I guess, brilliant in their conception, but not actually in their execution. So without much of forethought to how people would actually integrate these things into their lives. And I think that that doesn’t benefit anyone. That is a waste of intellectual capital and people’s time. So my position really is to try to smooth that over to get a sense of where technology is going, what level of interest technologists of various kinds, big tech companies, whether it’s Apple, or Amazon, or Google, or Meta, or whomever, where they’re looking to invest their resources, and how that’s going to fit with people’s actual needs, and how to put these two entities in contact with one another.

And that’s awesome. I’m glad you’re bridging that gap and all the people I get to talk to on the show, it seems like if they include the individuals they’re trying to assist, or make the technologies for from the beginning, well, like you said, they don’t end up creating this really great thing, that’s a really great idea, that’s really just kind of useless.

Exactly. And not to speak disparagingly of engineers or anything like that, but sometimes they can think that they have all the answers when they don’t.

So in my position actually as a professor at Stony Brook University, which is where I am right now, in addition to my position at United Spinal, I do both things at the same time. One of the courses that I teach is a specialized course for engineering students called Inclusion and Innovation. And so, it’s a course completely of my own creation. And it brings in students from all different disciplines. And what the purpose is, is to have these future engineers and these future leaders in their fields be more inclusive of the needs of people with disabilities.

And there’s not one student in my class who identifies as disabled. And they have really taken this idea and have run with it in just incredible ways. And one of the primary lessons that I teach them is you can’t innovate without getting user involvement really from the beginning, from the idea generation phase straight through the entire research and development process until the actual in marketing and end user adoption phase. You need to have somebody integrated into all different steps of that process, otherwise you run the risk of you completely missing the mark.

I am so glad you’re teaching that class. We work and talk to a lot of businesses about making their things more accessible. And that’s one of the first things we tell them, “Hey, you got to break down these walls to accessibility, but if you want to make it easier, just don’t build the stupid wall.”

Exactly right.

[inaudible 00:16:11] from the very beginning in the design, in the building phase. And you’re right, and I’m glad you did preface it with, “I don’t want to talk bad about engineers,” but engineers think differently than everyone else, I would almost say just kind of that singular focus in the way. And as long as you can get that the people with disabilities involved at the very beginning and have them thinking about that accessibility and the things that wouldn’t they can make some amazing things. But that’s great that you’re putting it in there. And I’m sure you probably, oh, just piqued their interest. I’m sure most of them probably just absolutely love that class because it’s another problem to tackle, another task to do, another thing to create. So that’s awesome.

Exactly right. Thank you.

So I’ve actually done a lot of collaborative work also with… So my academic home base is in kind of the health side of Stony Brook campus, but I’ve done a lot of collaborative work over this past several years with the engineering department, the College of Engineering and Applied Sciences. And when I first came in contact with them, engineers are problem solvers intrinsically. That’s kind of how they approach things. “What is the problem and how can I devise something to solve it?” What I think is very often the case is that engineers and really many people, unless you live with disability, just don’t understand the challenges that people with disabilities experience.

So when I first started working with this team of engineers who I’ve been working with ever since, they were just like, “Ooh my gosh, I had no idea that this was such a problem. I had no idea that is somebody with quadriplegia didn’t have access to computers like everybody else does. And that to the extent that they do, that it’s often just unimodal rather than multimodal.” And it’s nice to have varying ways by which you can interface with your computer, or interface with your cell phone, or what have you, internet of things, any number of technologies that are increasingly being incorporated into our lives. I think that level of exposure and that level of awareness is so, so critically important in making sure that the future of technology is actually accessible for everybody.

Most definitely.

As we’re kind of talking about Stony Brook University, I know that you’re also a professor of Health Policy and Medical Ethics. Can you tell us a little bit about that class and kind of your work in that sphere as well?

Sure. So I guess I can start by saying, so I had run from public office, like I had mentioned, way back in 2006. And one of the issues that I had as a central plank in my platform was access to stem cell research. And how to make sure that there was enough public funding for stem cell research. The outcome of the election did not go in my favor. But, that said, I ultimately ended up serving on what would soon become the Empire State Stem Cell Board. So this was kind of a product of my political run that came about because I had placed so much attention on that issue. And then, there was so much attention placed on my campaign in turn. So this was one of the things that I was most proud of as a result of running for public office. And I sat on the ethics committee of this board.

I became so much in love with the sociocultural question surrounding science and surrounding healthcare that, that became the avenue that I took. That was when I decided to study as a sociology student. And I looked at the ethics of stem cell research and the policymaking around stem cell research in countries around the world for my dissertation. After I graduated, I branched out to looking at ethics as it applies to not just science but your medicine as well. And in doing that, I realized very quickly how many medical ethics, or bioethical questions related to things that I had experienced directly. So whether that was what is futile medical care? Or how to make end of life decisions? Or what it actually means to live on technology, to have life sustaining technology integrated into your life? And how many bioethical classic cases involved the lives of people with disabilities, and put a very negative spin on the value of their lives?

And I thought to myself, “My goodness, maybe these questions are not being addressed by somebody who actually has lived experience.” So the very same way that we were just talking about getting the user experience, and the user voice in technological innovation, the very same thing goes for medical ethical questions. You have these people, many people who are adjudicating, or debating the quality of life, and decision making for people who have undergone significant life-changing medical issues. Doesn’t it make sense to have somebody, or people who have experienced those things actually a part of those debates? So I said, “I would like to be a part of this,” and that’s what I’ve been researching and studying really ever since.

And the class that I teach, and teach most frequently, and to the greatest number of students is I have a medical ethics class kind of this year, an introductory level medical ethics class. But I’ve taught this also at the master’s level as well as the PhD level. And I think that the students really gain a tremendous amount by hearing the perspective of somebody who can actually speak from personal experience. I think that happens very, very rarely, an unfortunately rare and minimal degree.

So I have come to really love it. I’ve come to feel very privileged to talk to my students, and to shape their minds in ways that they possibly may not have had their minds shaped. In the course of the semester, I always ask my students, because we talk about these cases where people decide to end their lives because of certain medical diagnoses that they have received, or certain injuries that they have sustained. And I ask my students, what would constitute a life not worth living for them? And very frequently they’ll say things like, “If I wasn’t able to do the activities that I’ve always done.” Or, “If I was dependent on machines to live.” Or, “If I couldn’t get out of bed.” Or, “If I was dependent on family members to care for me.”

So they say these things to me almost like they have removed me from that identity. And by the end of the semester, I say to them, kind of their minds have changed in terms of what the value of people’s lives, or what value ought to be placed on people’s lives, irrespective of their level of ability. And I feel very, very proud of that. I feel like, especially because many of these students are going to go into the healthcare fields, that we need to have people who are in the healthcare professions, who see the value of people’s lives in those terms.

Oh, for sure. I think everyone in the health field should see the value of lives no matter what.

That’s right.

That that’s very important. And I love you telling their thoughts at the beginning as compared to their thoughts at the end. And kind of, like you said, getting the information from someone who’s been there, who’s experienced these kind of things has to drive it home better than just someone who’s talking about theories, or things that they’ve learned, or maybe seen through experimentation, or things like that. But actually having those real world life experiences has to really drive that home to them.

I hope so. I think so. And the feedback that I’ve gotten from students over the years has been quite overwhelming. I tend to hear from the students after they’ve gone onto whatever profession they might choose to pursue and they’ll talk about lessons that they learned, or things that we’ve talked about in class, and that means the world to me.

Nice. And just giving people that experience too because, and I forget because I work in the disability community, and you work and kind of live in the disability community that there’s a lot of people out there that don’t have that experience, that maybe haven’t really kind of been with someone with a disability. We’ll get into talking about that a little bit more when we actually get into kind of talking about your books and everything.

Listeners, unfortunately, that’s all the time we have for this week’s show. But please do join us next week where we will have the conclusion of our interview with Brooke Ellison and just talking about her life, her work, her writing, and everything else. So we really do hope that you enjoyed today’s show. And we look forward to seeing you back here next week for the conclusion of our interview with Brooke Ellison. Thank you so much for listening.

Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on Assistive Technology Update? If so, call our listener line at 317-721-7124. Send us an email at tech@eastersealscrossroads.org, or shoot us a note on Twitter @indataproject.

Our captions and transcripts for the show are sponsored by the Indiana Telephone Relay Access Corporation, or INTRAC. You can find out more about INTRAC at relayindiana.com. A special thanks to [inaudible 00:26:38] for scheduling our amazing guests, and making a mess of my schedule. Today’s show was produced, edited, hosted, and fraught over by yours truly. The opinions expressed by our guests are their own and may or may not reflect those of the INDATA Project, Easterseals Crossroads, our supporting partners, or this host.

This was your Assistive Technology Update, and I’m Josh Anderson with the INDATA Project at Easterseals Crossroads in beautiful Indianapolis, Indiana. We look forward to seeing you next time. Bye-bye.