Looking for an inspirational story of disability, access, and heart? Then look no further than our latest episode with Dr. Anjali Forber-Pratt. Director of the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR), an elite wheelchair racer, a Paralympic ambassador, public speaker, disability advocate, and former assistant professor at Vanderbilt University.
Host: Dr. Mary Goldberg, Co-Director of the IMPACT Center at the University of Pittsburgh
Guest: Dr. Anjali Forber-Pratt, Director of the National Institute of Disability, Independent Living and Rehabilitation Research (NIDILRR), an elite wheelchair racer, a Paralympic ambassador, public speaker, disability advocate, and former assistant professor at Vanderbilt University.
Dr. Anjali Forber-Pratt | LinkedIn, ACL.gov News, Website
IMPACT Center | Website, Facebook, LinkedIn, Twitter
Transcript | PDF
- NIDILRR main webpage
- About NIDILRR video
Adaptive sport/exercise RRTC
- How to find adaptive sport/recreation: https://www.naric.com/?q=en/FAQ/where-can-i-find-accessible-recreational-activities
- NIDILRR funded: https://www.rectech.org/
- The National Center on Physical Activity and Disability (NCPAD)
AT3 and NARIC links on Assistive Tech
- AT3 Center State Assistive Technology Program Directory
- NIDILRR’s Small Business Innovation Research program
- Knowledge Translation Centers Program
Info on pursuing NIDILRR funding
- View NIDILRR funding opportunities at Grants.gov
- View NIDILRR Funding Opportunities on ACL.gov Tip: When the page is displayed in your browser, choose the "NIDILRR" category from the drop-down menu at the top of the page.
Dr. Anjali Forber-Pratt, Dr. Mary Goldberg
Mary Goldberg 0:04
The IMPACT Center at the University of Pittsburgh, supported by the National Institute of Disability, Independent Living and Rehabilitation Research, proudly presents ImpacTech. Welcome to season three.
We're so excited to kick off this season with today's episode, "Disability. Access. Heart." with our guest, Dr. Anjali Forber-Pratt, the Director of the National Institute of Disability, Independent Living and Rehabilitation Research, an elite wheelchair racer, a Paralympic ambassador, public speaker, disability advocate and former assistant professor at Vanderbilt University.
Recorded remotely from my soundproof bedroom closet in Pittsburgh, PA, this is your host, Dr. Mary Goldberg, and welcome to our 19th episode of the ImpacTech podcast series.
We're so excited to have you we've been very inspired by you both the impact Center as a whole and myself personally, to see you in this role really increases my faith in NIDILRR in what they're trying to do. I have really loved learning about your personal story and hearing you speak about NIDILRR priorities. And we'll define that National Institute for Disability Independent Living and Rehabilitation Research. Hearing you speak on behalf of the organization, the listening sessions that you've run, and the impact that you personally I know will have on the long range plan is just wonderful. So it's great to have you in the role. And we'd like to start by getting to know you a bit and your personal story being that you grew up with a disability yourself personally, if you could help inform our group, what transverse myelitis is, I hope that I pronounced that correctly.
Anjali Forber-Pratt 1:57
Absolutely. So yeah, I've grown up with my disability for as long as I can remember. So I was adopted from India when I was a baby, and just two months after arriving in the United States. So when I was only four and a half months old, I got transverse myelitis, which is a focal inflammation of the spinal cord, which led to my paralysis. So, you know, it's kind of one of those fluke things that I like to say I'm one in a million. And it just was in my deck of cards, so to speak. I feel very fortunate, though, that I was, you know, in the United States with access to incredible medical care and opportunities, and the whole disability community and so forth, where, you know, I just grew up where my disability was just a part of who I was. And so it was something that I think my parents certainly remember otherwise, in terms of just, the traumatic experience of that occurring, but being so young, it just was a part of my story and who I am.
With acquiring my disability so young, though, I think there's some differences of acquiring a disability at such a young age or growing up with a disability, versus acquiring it later in life. And I think that some of those nuances and challenges, you know, are just unique and different and make my story a little bit more unique in that way. So for example, I, as a very young kid, I actually thought everyone in the whole world had a disability, and that it was just something that I would outgrow. And this was, you know, little five year old me that was looking around and, and noticing that every adult I knew could walk. And so I just thought, oh, yeah, everybody has this littledisability thing. And then one day, you just learn how to walk. And it just happens at different times for different people. And it was that, you know, that was the logic that I sort of tried to put together for myself to make sense of the world around me. And it was, it was really, you know, first of all, a little bit of a flawed logic there.
But it was it was really through the experience of then finally being able to be exposed to adults with disabilities, where I learned that oh, wait, you can grow up disability and all and for me that exposure to adults with disabilities happened to be through adapted sport. And so it was seeing wheelchair racers in the Boston Marathon that really opened my eyes to the fact that you could not only become an elite level athlete with a disability, but you could go to college, have a job, have a family, do all these things that we aspire to in life, disability and all and so it really was something that just opened my eyes to the world of possibility. And as I was again, as a young child just was starting to make meaning of the world around me. Disability and all.
Mary Goldberg 4:47
That's so powerful. Really shows how wonderful your parents were in making sure that you had those exposure opportunities. And speaking of wheelchair racing, I know a fun fact about you. That you are a former World and American record holder in the 200 meter race. So exciting. Could you describe a little bit how you got started in the world of wheelchair racing? I suppose it must have been inspired by some of what you saw. But could you tell us a little bit about your journey?
Anjali Forber-Pratt 5:17
Absolutely. So you know, when, as a young kid, first of all growing up with seeing those those racers in the Boston Marathon, initially, that was sort of the the eye opening experience of wow, that looks really cool and looks like a lot of fun. And how on earth do I get involved, that was kind of the initial draw. And it was something that was so powerful to me just to be able to see that power of representation and to see these adults that were living their lives, disability and all and I started bothering my parents wanting to find out how to get involved in in that in something as cool as that. At the time, there was a Saturday sports clinic for kids with disabilities, that was about 45 minutes away from my parents house. And it was only for a couple hours on every Saturday and it was a chance for for kids like myself to try out all these different, different sports and activities. And it was run by recreational therapists, occupational therapists and physical therapists. So it was really meant to expose kids with disabilities to various sports and physical activity and in sort of fun way as opposed to traditional going to physical therapy. And it was a chance where I got to try every sport under the sun, I mean, wheelchair basketball, tennis, wheelchair racing, downhill, skiing, hockey, horseback riding, swimming, you name it, we pretty much tried it. I personally fell in love with the sports with speed.
So I was the summer athlete on the on the wheelchair racing side and the winter athlete on the Alpine Skiing side. And a fun fact is that I actually always thought that my elite athlete career was going to be on the downhill skiing side, not on the wheelchair racing side. So things took a little bit of a turn when I chose to go to college at the University of Illinois in Urbana Champaign, which is the flatlands and a little bit hard to pursue alpine skiing dreams in the land of the flat. And that was when I picked back up wheelchair racing. So I had a pretty significant injury, wheelchair racing. When I was 13 years old, I actually had crashed into an 18th-century jagged stone house and broke both of my arms. Yeah, yeah, I will say I was winning the race at the time. So I feel like that's an important part of the story. When you break both of your arms when you were already a wheelchair user, it is certainly a significant setback. And I was in a plaster cast for four and a half months because they also happen to be the two slowest healing bones in your body. And I honestly thought that my competitive wheelchair racing career was going to be over because of that injury. And it really wasn't until I got to college and had the opportunity to work with some world-class coaches. And they modified the style and my push mechanics of my stroke so that it was less intensive on my wrist. And so I still had that foundational knowledge of being a wheelchair racer and that athletic drive in me and with those tweaks working with those coaches, I was able to adapt my pushing stroke and to be able to go back to wheelchair racing, which then led to making my first national team in 2007, and then representing Team USA in the 2008 and 2012. Paralympic Games.
Mary Goldberg 8:41
What an amazing experience. Urbana Champaign is definitely a hotbed for innovation related to disability and a very active community there. I'm curious, was it at Urbana Champaign that you've received your calling for advocacy work in general in the disability space?
Anjali Forber-Pratt 9:01
You know, Illinois is one of the greatest places in terms of innovative firsts for people with disabilities. I mean, it's one of the first public universities to open its doors for students with disabilities so many innovations related to assistive technology and and just public access such as buses with lifts and curb cuts and the heart of wheelchair sports as well. And I think that it was really a place where my disability activist heart got to grow and expand and to move into new spaces as a leader so I would say that, for me, it was unfortunately a lot of being faced with a lot of inaccessibility and ableism and discrimination because of disability that happened before college as I was going through high school that really fueled a lot of my initial activism, but then it was being at a place like Illinois where there was a huge discipline.
With the community and there is a chance to learn from each other's stories and to learn about the similarities and differences of growing up with a disability versus acquiring a disability and nuances of those with higher support needs and, and really being able to come together in a beautiful way to rally behind this sort of collective activism for the broader disability community. And I would also like in my time at Illinois, I would say that, unfortunately, because my high school was completely inaccessible for students with disabilities, and I was involved in a lawsuit actually against them because of that. In high school, it was difficult because of the inaccessibility and the attitudinal barriers, it was difficult to participate in any extracurricular activities or the chance to be a student leader and things like that. So when I got to Illinois campus, I would say that I was the kid in the candy store. And I didn't really know how to say no to the opportunities that came my way. So at some point in time, I think I was president or co-president of at least nine different student organizations, and just really engaged in that disability activism as well as other ways of just being a leader and being able to grow and connect with the broader campus community and disability community.
Mary Goldberg 11:19
That's wonderful. Yeah, this self coined disability access heart, I think, is what you called it led you to be recognized as a White House Champion of Change in 2013 by Obama. What personal or professional accomplishments helped you earn this honor?
Anjali Forber-Pratt 11:35
Well, you know, it's, first of all, it was such a tremendous honor. And in parallel to that recognition, I had the incredible experience of being able to participate with other key national disability leaders at the time, in aroundtable discussion with President Obama about disability employment policy, and I when I think about just the opportunities that that really provided and to really deeply engage with, with senior leaders and in the disability community, and so forth, I feel very humbled and very blessed for for that experience.
I think that it was a combination of as I was alluding to the activism around my lawsuit against my school district where I faced discrimination, I think it was also being able to take the platform of Paralympic success and being able to use that as a gateway to promote access and rights of people with disabilities in a variety of spaces, whether that was nationally or internationally, and really being able to engage thoughtfully with the disability community worldwide, of how we can help individuals to lead active productive lives and be full participants in society.
Mary Goldberg 12:49
Thanks so much. Yeah. And, and as you shared with us, you are a person of color as well. You are a woman, you are wheelchair user, um, you certainly have faced adversity through the discrimination that you encountered, and certainly seems like that has driven you to excel in so many areas, but also really seems to help people connect with your message. So your contributions are well noted, and I know are so impactful. So congratulations on everything that you've accomplished. Thank you, and related to the impact of assistive technologies. Could you talk a little bit about how assistive technologies have helped you personally from an early age, as you've described to us, but also up to recently with your current career and your personal pursuits?
Anjali Forber-Pratt 13:43
Absolutely. I mean, you know, to be honest, not a day goes by that I don't rely heavily on assistive technologies just in, in everyday life. And I think that that's something that's really fundamental, not just to who I am, but the core principles of NIDILRR as well as of the Administration for Community Living, which is the agency where NIDILRR sits, and I think that it really centers around what I was describing of wanting to ensure that people with disabilities be able to live and participate fully in their communities and being able to do that may involve reliance on assistive technologies. And we all rely on various assistive technologies. For me personally, it's what enables that full inclusion and participation. It's what you know, increases those opportunities for education, for social interactions for meaningful employment for all of these different elements in society. And assistive technology becomes that tool that sort of helps to level the playing field, if you will, and serves as that enabler for me.
You know, when I think about the assistive technologies in my own life, it's everything from the very wheelchair that I use every day to the power assist Smart Drive, that's an add on onto my chair to my Apple Watch, which also integrates with my Smart Drive, which makes exploring trails or going out with friends and family far more accessible. But then there's also low-tech assistive technologies that I think about as well, you know, whether that's things that helped me to reach items, or whether it's things that helped me to be able to, to navigate the world around me, I mean, I think of just the power that our mobile phones have, and the individual apps that are within them, and the ways that we can customize those apps and those settings and so forth to our individual needs.
You know, for some people, it may be having turn-by-turn directions visually or having them auditorily. I mean, I think of all of these different items that really make the world a little bit more accessible and easier to navigate. I also think of the really cool intersection of assistive technologies, with the world of sport and recreation, especially in the adopted sport world. So my whole athletic career, you know, was founded on dabbling in Hey, you know, how can we explore what's available in terms of assistive technologies to help to advance the field of adopted sport as well. So for example, in with alpine skiing, for those of us in wheelchairs, who use mono skis, the very mechanism that is under a mono ski to allow for greater shock, absorption, and so forth, it actually comes from motorcycles like it's a motorcycle shock system. And it wasn't designed originally for mono skiing, but it was something that the adopted sport community was like, well, gee, this might be really beneficial to this particular sport and to this particular need. And, and I think that that is something that we really need to be more critical consumers of the ways in which other product development and technology development that may be beneficial for other purposes may have a unique benefit to the disability community or to specific needs within the disability community.
And at the same time, we also must encourage direct product development and assistive technology development, that is from the ground up from that disability one. So it's up to me, it's a both-and. So what I mean by that is we you know, we need those highly specialized assistive technology developers and rehabilitation engineers who are from the ground up thinking of disability as the primary and then building those products or dreaming of those products and developing them and bringing them to market from that lens. But we also need to encourage the mainstream from a universal design perspective, and from just a broader product development perspective, that gee, you might be onto something. And you may have no idea that that could be filling a really unique need or challenge that a person with a disability may be facing every single day. And it might be an untapped market that you're just not even aware of. And so it to me it is that both-and that's awesome.
Mary Goldberg 18:08
Yeah, because by building and designing for extreme users with the most significant needs in mind, it does lead to that Universal Design piece. So So you're absolutely right, it is a both-and. You've talked so much about sport, and I know following you on social media, you highlight great pieces about sport and disability and intersection and have seen some recreational technology pop up there. What do you think sport and in particular recreational technology does for the disability community at large?
Anjali Forber-Pratt 18:41
Oh, goodness, I think that sport, in general, it really is a way of getting individuals out there to not only have greater physical activity and greater health and in terms of physical needs, but it also serves as a connector to that broader disability community and to just being able to feel less isolated and less less othered, which so many in within the disability community often feel. For me, it was sport where I finally met other people with transverse myelitis. It was were the things that they really felt othering with having a disability, all of a sudden went away.
And in some of my own research, where I've talked with adolescents about their own disability identity development, they point to sport and having teammates and being able to to just go and be a kid right, and to not think about the fact that they have a prosthetic or that they can't see or all of those challenges. And these youth that I would speak to they would talk about the difference of going to a wheelchair basketball practice and what that experience was like versus how they felt when going to their school physical education class where they might be the only and so that you know, they would feel that spotlight on them and drawing attention to their disability difference. Whereas with their wheelchair basketball friends or their track and field friends, they could just be the athlete, be the kid, enjoy the sport.
Mary Goldberg 20:08
That's so awesome. You spoke a bit about future needs related to assistive technology design and development, including broadening the base and the people that should care about assistive technology design and development and some of the market need. What else comes to mind related to future needs and assistive technology?
Anjali Forber-Pratt 20:30
Yeah, oh, my goodness. First of all, it's a really timely question. I mean, I think that as was alluded to, we are in the in the midst of NIDILRR's long-range planning process, which will set the next five-year strategic plan for NIDILRR. And I think that we're really looking to the field to also help us answer this question of what's missing what's next. But I do think that a few of the big picture discussions that we've been having and conversations with stakeholders and grantees and staff part of it is who is not currently represented in NIDILRR's portfolio who should be and so this could be profession sectors or, or work that affects certain subpopulations.
So for example, like boiling it down to what this means with technology and technology transfer. We know that sometimes product developers or technology developers stumble their way into the assistive technology marketplace, or they specialize in it from the start, as I was describing with rehabilitation engineers, for example, but are there sectors who may not even realize the potential for their work to impact people with disabilities in a positive and meaningful way. We also know that there are newer engineering fields like control engineering with an emphasis on virtual reality and augmented reality, which that feels like a potential untapped pool of possibility. There's also companies that are going out on a limb and new innovative ways. So just recently, I saw that L'Oreal launched a an adaptive makeup applicator. And to me, that's a really great example of a company that you might not have thought of as being in the assistive technology, product development space that has come out with this really, incredibly inclusive applicator. And so I think of for us, it's really being able to put ourselves under that microscope of hey, who's missing from that portfolio or, or what subpopulations are we not reaching that we could be. And so I think of that as a potential new direction.
Mary Goldberg 22:29
We, of course, at the IMPACT Center, share your passion for assistive technology, and we know why but in your own words, why should these other sectors including those outside of the space, say, across industry, research, entrepreneur, researchers and entrepreneurs care about assistive technologies?
Anjali Forber-Pratt 22:50
Yeah, oh, my goodness. Well, the fact that assistive technology is able to be used to enhance independence to enhance comfort, and convenience, and to be able to enable that full participation in society, fundamentally, to me, it begs the question of who wouldn't want that, right. And so it's a tool and a mechanism to be able to stay connected with others to interact and to really lessen the potential effects of a disability. And in some ways, it promotes inclusion and participation. And I think that anything that we can do to help other individuals realize that assistive technology helps to level that playing field and helps to make the world a little bit more accessible for all. To me, that's something that's really exciting. The other piece too, is that while the assistive technology marketplace is obviously very focused, and should be very focused on the needs of people with disabilities, there's also a really unique intersection between the aging and disability community and, and the individuals who are aging. Over time, they start to seek out various assistive technologies to again, make their lives a little bit easier to stay connected with their loved ones to stay engaged with their community. And it's a tangible example of the ways that assistive technologies really can help us all. Again, I go back to the mobile phone example. I mean, just a couple decades ago, things looked very different versus the ways that we are connected with our mobile phones today and the ways in which at our fingertips, there are so many built-in technologies, whether that's navigational technologies, whether that's the ability to increase font sizes, whether it's to adjust color contrast all of these different tools that are even spell check right with within software systems, things that used to be disability specific add on that individuals would have to seek out and have specialized software or devices and so forth to do are now at our fingertips and it normalizes the experience of using assistive technologies. And I think it helps to combat sort of some of those stigmas and othering that so often people with disabilities face. And so going back to the original question, I would say that assistive technologies are for everyone. And the more that we can get other sectors and other professions and other individuals to really see that value, and to see that universal benefit, then it really will help to make a greater impact on society.
Mary Goldberg 25:31
Thanks so much. Yeah, it's evolving so fast, which is, of course, both exciting and a challenge in both how we continue to raise awareness of these other sectors to join in this revolution, but also how we can help to prepare users to ultimately adopt the technology and make sure it's fully accessible and all the principles that we know. So we're excited to learn more about how NIDILRR will address these emerging needs in our next episode, and really appreciate you joining us Anjali. Thank you again.
Anjali Forber-Pratt 26:01
Mary Goldberg 26:03
Next time when we return with Dr. Forber-Pratt, we will talk about her work as Director of NIDILRR and what her vision is for the organization moving forward. If you like ImpacTech, please review us on Apple podcasts or wherever you listen to podcasts. Thank you again for tuning in and continue to make an impact in whatever you do.
A quick note from our sponsors. IMPACT initiatives are being developed under a grant from the National Institute on Disability Independent Living and Rehabilitation Research. NIDILRR is a center within the Administration for Community Living, Department of Health and Human Services. IMPACT initiatives do not necessarily represent the policy of NIDILRR, ACL or HHS, and you should not assume endorsement by the federal government and the same goes for the University of Pittsburgh. We would like to thank our ImpacTech guests and our production team led by Dr. Michelle Zorrilla at the University of Pittsburgh, Department of Rehabilitation Science and Technology.