ATU622 – Brooke Ellison, PhD – Part 2

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 on the field of technology designed to assist individuals with disabilities and special needs. I’m your host, Josh Anderson with the INDATA Project at Easter Seals Crossroads in beautiful Indianapolis, Indiana. Welcome to episode 622 of Assistive Technology Update. It is scheduled to be released on April 28th, 2023. In today’s show, we are super excited to play the second part of our interview with Brooke Ellison. If you happen to listen to us last week, you realize we just had too much to talk about to get it all into one show. So luckily we were able to get the second part of it here and we will have that coming right up.

We also have a quick story about Be My Eyes, the app that helps link individuals with visual impairments, with cited assistance, starting to use AI for some of those duties. We get a quick story about how that’s going. I was also lucky enough to be asked to be on the Business Equity and Opportunity Show from WISH TV here in Indiana. And we put a link to that video down in the show notes in case you would want to go and check that out. As always, listeners, we thank you so much for listening, but we also value your input. So if you have a question, a comment, something we can do better, something we’re doing well or someone you’d like to hear on the show, please send us an email at tech@eastersealscrossroads.org. Call our listener line at (317) 721-7124. Hit us up on Twitter at INDATA Project. Or you can always leave comments and thoughts on whatever streaming service you’re using to get your podcasts. But for 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 ATFAQ 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 fix without taking up the whole day. Part of the show is Assistive Technology Frequently Asked Questions or ATFAQ. On Assistive Technology Frequently Asked Questions, Brian Norton leads our panel of experts, including myself, Belva 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 podcast to check out, you can check out our sister shows Accessibility Minute and ATFAQ, 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.

Listeners, our first story today comes from over at Be My Eyes and it’s titled, Introducing our Virtual Volunteer Tool for People who are Blind or Low Vision powered by Open AI’s GPT-4 Technology. So the story again comes out of Be My Eyes and their blog, and basically, if you’ve never heard of Be My Eyes, it’s been around since, I want to say about 2015. And what it does is, if I am a blind or low vision individual, I can open up the app and it will wait and connect me with a cited volunteer and I can show them a picture of something. “So is the date on this milk expired? Which one’s the red shirt?” Just different things that I might need a bit of assistance with because of my vision loss, and it’s a great, great app. I’ve used it with a whole lot of people, it’s really wonderful and it does rely on volunteers.

So the only thing I’ve ever heard is that occasionally, depending on the time of day, the need or something like that, it can be just a little bit challenging to maybe get someone on the other line. So to combat that and just continue to innovate, Be My Eyes is launching a virtual volunteer. Now, this is just in a closed beta right now as they test it and make sure that it’s actually going to be functional and helpful for the individuals that use Be My Eyes, but it’s using Open AI’s GPT-4 language model. Now, what does this mean? Well, I mean there are other virtual assistants out there and other programs that are able to look at a picture and tell you what is in it. Even just the normal camera app on an iPhone can actually find some text and some other information and pull it out pretty easily. But the idea behind this is that not only is it going to be able to tell you things, what a picture’s of, what all’s available there and other information, but actually it’s going to be able to dig a little bit deeper.

So in the press release blog story here it says, the one thing it might be able to do is if you send a picture of the inside of your fridge, it will be able to not only correctly identify what’s in it, but it can also take and analyze that information and tell you what might be able to be prepared with those ingredients. Then it could offer a number of recipes and even send step by step guides on how to make them. So if you really think it can just give you a whole lot more information than just, “Hey, do I have enough milk for this? Or is this expired?” Or maybe some other information like that. So I could really see this becoming a great tool and a big help, especially being used in this way. As I said, right now it is in a closed beta. I will put a link to the story over in the show notes. And I believe somewhere in the story you can actually sign up for the wait list to test drive that virtual volunteer tool.

What’s really nice is Be My Eyes is not trying to rush this out just because it’s something new and cool and shiny. It looks like they’re really trying to get it out to those beta testers, have them find the glitches, the hiccups, the little things that maybe aren’t working as great, and then use that information in order to make it work a little bit better before it is sent out to the masses. So artificial intelligence is definitely in the news a whole heck of a lot for a lot of different reasons, but I think this is definitely a pretty darn good use of it to be an extra volunteer for Be My Eyes. So again, we’ll put a link to this story over in the show notes so that you can go check it out and even sign up for the wait list if you like. And also if you have never used Be My Eyes, if you’re a visually impaired individual or someone who is not visually impaired but willing to be a volunteer, I recommend that you definitely go and check it out.

Listeners, next up, I’m very excited to play the second part of our interview with Brooke Ellison. As you can hear probably from last week’s interview and from today’s, once we got talking about things, it was just hard to stop, so it’s very hard to fit it all into one episode. So luckily we are excited to have the rest of the interview here in just a moment. If you haven’t listened to the first part, definitely do go back and listen to our last episode, so you can hear everything. And we’re going to get right straight into the interview from where we left off last week.

I know you’ve used, you said from Morse code at the beginning to everything else. Where do you still feel like technology falls short? Where are the gaps that you see or maybe feel on a daily basis where things could really be improved?

Sure. So I am situated in my position at United Spinal to look at technology not purely as an avenue of entertainment, not just something that is frivolous or just gadgetry or anything. That’s often how people understand technology, that it’s these gaming devices and that kind of thing, which of course is important for sure, people need to have recreation in their lives. There’s no question about that, but I view it to be something very much more fundamental. So I ascribe to the overall philosophy that disability is not just a physical characteristic, it is very much couched in context and the kinds of environments that we build, the policies that we enact, the social services that we put into place, and certainly the technology that we innovate and all of these things can either enable somebody or further disable someone, and so much so that technology becomes the mechanism by which people achieve just fundamental human rights.

So the ability to become employed, the ability to gain access to education, the ability to access medical care. We saw this during the pandemic, the ability to be more participatory in their communities. So I understand technology to be that bridge towards the achievement of the fundamental human rights that we all want to achieve, and we all value, and so much so that I understand technology as a fundamental human right in and of itself, and that’s how I want technology to be pursued. So I think areas that we still need to continue to innovate in is, especially somebody like me who lives with quadriplegia, how can technology enable somebody [inaudible 00:11:02] to better live in the community at home? Where do we need to innovate to make that a possibility? How can technology be further integrated into people’s wheelchairs? So I think technology has been looked at as almost from a siloed perspective.

We have technology that does this thing. We have technology that does this other thing, but not much like that gets integrated so that things can work seamlessly together. I think there’s a lot of space like that needs to be addressed when it comes to transportation, so how people with disabilities can integrate transportation into their lives. I know that’s something that I would love to see how technology can be integrated to somebody’s lives to allow them to pursue a family. So all of these different kinds of, I think, rites of passage that people typically get to enjoy that are not always often enjoyed by members of the disabled community, and that is where I think technology can play a really valuable role if we understand it in those terms.

For sure. And hopefully you, working with folks, can help them keep those ideas front of mind. Well, Brooke, I can’t let you leave without talking at least a little bit about your book. So I know you’ve written a few, one which just came out. So just to start with, can you just tell us a brief overview of the books that you’ve written and then we’ll dig into them a little bit deeper?

Sure. Yeah, no, so my first book was published right after I had graduated from college, so way back in 2001, 2002. That was what I decided to do after I graduated. I wasn’t sure what direction my life was going to take, but I knew that some parts of my life I wanted to share. So my first book articulates kind of the journey that my family and I took from the time of my accident until 10 years later until I graduated from Harvard and culminating with the commencement speech that I gave at the time of my graduation. So that was my first book called Miracles Happen, which the paperback version was The Brook Ellison Story, and that was adapted to it into a film by Christopher Reeve. So yeah, that was a really rewarding experience. It’s something that you’re quite proud of.

Then ever since then, I knew I wanted to write another book, but I wasn’t sure, I was delaying, dilly ding on it. I wasn’t sure what I wanted to talk about. I didn’t know if I had something worth talking about. Then right before my 40th birthday, I became very sick. I had a pressure ulcer, which for those of you who are familiar with ear pressure ulcers, they’re quite devastating. It was infected and quite severe, and my life was very much in jeopardy. I was successfully treated and has been healing ever since. It’s still not fully healed, but has been healing ever since. But after that, after it was initially treated, I said to myself that you have some important lessons that you have learned in your life and so things that are very valuable for people to know, you need to get this story down.

You need to get these ideas down now, otherwise you might not have the opportunity to do that in the future. So I just locked myself away in my bedroom, which is right behind me now, and I just wrote and wrote and wrote for that entire summer of 2019 and poured my heart out and talked about all of the things that I thought were very valuable lessons. So this was a much more introspective book, a book that took me a long time to be able to discuss, talking about very personal aspects of my life and lessons about how to integrate disability into your identity in a way that is based on the virtues of disability, not the way I think people typically understand disability as a deficit or things of which we ought to be ashamed or feel embarrassed about, but actually the virtues that come out of living with a disability, the kinds of problem solving and skills that you develop and creativity and resilience and just different understandings of the world.

Those were the things that was the picture of disability I wanted to make sure people fully understood how I got to that level of awareness and that level of understanding and how I’ve integrated that into my life ever since. So concepts of hope and leadership and resilience are deeply embedded into the chapters of this book. So it’s called Look Both Ways, and I feel very, very proud of it. It was very difficult to write, bu you’re quite proud of the outcome.

And I mean, I hate that it was difficult to write, but maybe that’s kind of the best that you’re actually getting the important things out there and the real experiences.

Exactly.

The real experiences are never the easy ones to go back and look at for sure. Well, hey, in Look Both Ways, you said what makes living with quadriplegia or any disability at times too much to endure is not really the personal exacerbation but public policy. And I know this is the social model of disability, which I know I see on a daily basis just in work and everything else, but what barriers and cases of inaccessibility have really most frustrated you throughout your life? And we only have so much time, so we can’t get to all of them, I’m sure, because kind of those main ones that really just frustrate the heck out of you.

Right. Well, yeah, I think that the Americans with Disabilities Act has gotten a significant degree in the built environment level of accessibility, but I think we need to go much farther than that. I don’t think that the legislation has been matched by a societal transition when it comes to an awareness of disability and what it means to live with a disability, the kinds of virtues that come out of disability. I think that we still have a significant ways to go when it comes to not just making modifications, but understanding inclusion as a virtue for everybody. Not just accessibility, as leading some kind of level of compliance or achieving some kind of mandate, but looking at accessibility as, “Okay, wait a second. There is a population of people with immense talent and a very valuable voice that I am failing to include or deliberately excluding by not being inclusive, by not be making myself accessible.”

That is the level of inclusion that I want to see get achieved. And I think that we’re making some strides. I think that there still needs to be more work done on tech access. So not just the built environment, but ensuring that the technology that we innovate is likewise fully accessible, that our policies are thinking about disability. You’re not just as an afterthought, but as fully integrated into with understanding people with disabilities as a part of society just like everybody else, not just an afterthought, not just something that we can solve in retrospect, but actually members of the question from the get go. These are the levels of inclusion that I think that we need to be talking about and thinking about and are surely achievable now more than they ever have been in the past. And if I can be a part of advancing that conversation that I feel quite proud.

That’s awesome. We hope you are part of a advancing that conversation, and I think it’s amazing as myself, members of organization and other things as there is a bigger push around for diversity, equity, and inclusion, how many times they forget individuals with disabilities in those pushes.

Far to frequently. Almost always, actually.

Yeah. Yeah. And it seems like it’s like guys, this is the biggest minority group in the world and yet in the world, and it covers all those other groups as well. So it always amazes me. So I’m glad that you are raising up that voice and making sure that there’s a seat at the table. Brooke, as we have a little bit of time left, I do want to ask you just a few more things. So what is one piece of advice that you’d offer to individuals with an acquired disability or maybe living with a disability? What’s one piece of advice that you could give them from your experiences in your life?

Oh my goodness. I would say the most valuable piece of knowledge that I’ve acquired over the years is to shake off all of the social indoctrination about what disability means and define it yourself and define it in terms of empowerment that disability does not make you a weaker person. It makes you a stronger, more present, more skilled and more talented person, and that’s how you ought to live your life. That’s understanding that and understanding that I did not need to be apologetic about the disability that I experienced or be ashamed of it or try to hide it or feel embarrassed by it. That is was immensely empowering to end as brought me to where I am right now. Having talking to you today, that understanding or not for that understanding, I would not be having this conversation right now. So that’s what I would say is to just ignore and reconstruct the construct that’s been associated with disability and choose it for your own self.

Awesome, awesome. And then along those same lines, what advice could you offer to the individual with a disabilities, their circle of support, their family, their caregivers, their friends? What kind of advice could you give to them?

And this is the lesson that my family and I had to learn that especially if you have recently acquired a disability, it can seem overwhelming, but people have done it in the past, people have succeeded and gone on to live incredibly valuable and virtuous lives. It takes effort, it takes some hard work, but a disabling accident does not make you a weaker entity. It makes you a stronger one, especially when you have loved ones around you who can help support you through times of struggle.

Awesome. And just one more question along those lines. What practical advice can you offer about how to deal with that uneasiness or even distress that maybe many people feel when they’re in the company of someone with a severe disability? I know I see it here at work, I don’t notice it much just because I’ve been here for quite a while, so you don’t notice those things, but I see people maybe from the outside of getting the elevator with someone in a wheelchair or something, and there’s that uneasiness, the kind of not knowing what to do or maybe what to say or those kind of things. What practical advice can you offer to those folks?

Right. Well, to the extent that people feel like they don’t know the right thing to say or uncomfortable because they feel like they’re going to say something stupid or it’s something of that nature, I would say just make yourself friendly. Just say hello. Just try to overcome that level of uneasiness and know that you could conceivably change somebody’s life by doing that. That when people feel excluded, their lives can be just tremendously negatively impacted. So just take that additional step, put your own feelings of, I guess, uncertainty aside and say this person has value. So just last night I was a part of a class on autism and we had speakers who were members of the autism community and one of the speakers said, “See the human being first.” I think that was really valuable, and I think the same thing goes for somebody from any background, irrespective of what their disability might be, see the human being first, and don’t let arbitrary factors stand in your way of getting to know that person, especially knowing that that person has a very valuable gifts to share.

Awesome. And I think that’s great advice for all of our listeners and really for everyone out there. Well, Brooke, if our listeners want to find out more about you, pick up a copy of your books or learn more about your work, what are some ways for them to do that?

Excellent. Thank you, Josh. Well, you visit my website, which is just brookeellison.com, so Brooke with an E E-L-L-I-S-O-N.com. You can also find me on social media @brookemellison if you’re on Twitter, on Facebook, and then my book is available on Amazon and Barnes and Noble.

Awesome. We will put those links down in the show notes so folks can easily find those. Brooke, thank you so much for coming on today. I’ve truly enjoyed this conversation. Even if it wasn’t for a podcast, I think I’d still really actually just enjoy talking to you.

Same here, Josh. Thank you.

And we definitely thank you for being out there and not to use that old adage fight in the good fight, but making sure that engineers, that health and that these other folks really take disability into consideration and also realize that it’s a portion of a person, it’s part of their life, just like, but it’s not the whole person, it’s not everything. So I’m really glad that you’re out there talking about that, and-

Thank you.

I think-

Thank you. I feel quite proud, really. Thank you.

Well, awesome. Awesome. And maybe down the road when that third book comes out somewhere down there, let’s hope it’s not 20 years from now, but-

I know, at least half that time.

Exactly. Well, hey, thank you again.

Thank you so much Josh, it was a delight to talk to you.

Do you have a question about assistive technology? Do you have a suggestion for someone we should interview on an assistive technology update? If so, call our listener line at (317) 721-7124. Send us an email at tech@astersealscrossroads.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 Nicole Prietto for scheduling our amazing guests and making a mess of my schedule. Today’s show was produced, edited, hosted, and fraud over by yours truly. The opinions expressed by our guests are their own and may or may not reflect those of the INDATA Project, Easter Seals Crossroads or supporting partners or this host.

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