Designing for Bespoke Bodies: IDP Goes to The Bionic Race

Designing for Bespoke Bodies: IDP Goes to The Bionic Race (Season 6, Episode 1b)

(Music / Open)

Janet: In this series we will be discussing specific examples of design techniques that can make a positive difference for people living with certain human conditions.

Carolyn: The more a designer understands the client and or the community the more effective and respectful the design will be.

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Intro:

Janet: Welcome to Inclusive Designers Podcast, I’m your host, Janet Roche…

Carolyn: And I’m your moderator, Carolyn Robbins.

Janet: In this episode, we want to take you along to a very special event. We were invited to attend the ‘Bionic Race’ which brings together adaptive athletes, and also everyone who loves the joy of running!

Carolyn: We briefly talked about the race in our discussion of ‘Designing for Bespoke Bodies” and it deserves a separate ‘more to the story’ episode of its own!

Janet: At the event, we spoke to participants, organizers and exhibitors to learn first-hand what this race means to them and what makes it so special…

Carolyn: And of course, we brought our field recording gear along to the race to let you experience the excitement of being there too. The race was well attended, there were bands playing, a truly fun day— and just a note, you’re going to hear some of that in the background of our interviews… just like being there.

Janet: Right?

Carolyn: Oh yeah.

Janet: Before we go any further, I just want to add a few quick shout outs… one to the team at CoDesign Collaborative whose book on Bespoke Bodies I just love, and who invited us to join them at this race. And to Stepping Strong who are paving the way for research of new prosthetic techniques. And last, to the Bionic Project who aside from other accomplishments, created this race.

Carolyn: Absolutely! To learn more about these organizations and the amazing work they are doing, take a listen to our other episode called ‘Designing for Bespoke Bodies— Bionic Prosthetics and Beyond’ …

And now, back to our day at the race… on the starting line for this episode, Maggie Baumer…

Janet: Yes. Maggie was the first person we talked to. She is from the Hanger Clinic, and also represents another organization… but we’ll let her tell you about that herself…

Carolyn: Right! So here is our interview with Maggie Baumer of the Hanger Clinic…

(‘whoosh’ sfx to take us to Bionic Race Day audio)

Interview #1- Maggie Baumer/Hanger Clinic

Janet: What brings you here today to the Bionic Race?

Maggie: I’m here representing two different organizations. So one is Hanger Clinic, which is my employer, and we’re the largest provider of prosthetic and orthotic clinical services in the country. So, you know, we have the privilege and the pleasure to work with people with limb loss every day. I am one myself. I have a prosthetic arm. So I cannot say enough good things about this community and how much Hanger and others have helped me.

We’re also here with the ‘So Everybody Can Move’ initiative, which is a national movement to get coverage for prostheses and orthoses too, for physical activity. So you see a lot of people wearing running blades today. Those are not covered by insurance. People have to go through a grant to get them a lot of times, or they don’t get one. And so, ‘So Everybody Can Move’ is introducing bills in a whole bunch of states, Massachusetts included, to get those covered by insurance.

Janet: That would be amazing. And it’s so horrible to hear things like, ‘and they’re not covered by insurance.’ I just don’t, I mean, it even helps people in the long run in their health and their well-being. I do not understand. So, but it’s amazing that you’re here and then, so let me just make sure I understand. So is it the Hanger Group or the Hanger Clinic?

Maggie: It’s called the Hanger Clinic and we’re a national organization that provides prosthetic and orthotic care. So we have individual clinics. There are 10 in Massachusetts and over 800 across the country.

Janet: That’s fantastic. Now, what do you actually do at the Hanger Clinic?

Maggie: So I used to manage our clinic in Springfield and then I was an area manager. But just a few months ago, I took over this national role. It’s called the leader of enterprise patient advocacy. It’s all about patient advocacy, bills like ‘So Everybody Can Move’ and Medicaid coverage as well.

Janet: That must be very encouraging and uplifting for you at times. And so, how did you find the Hanger Clinic? Did they find you, or did you find them? How did that work?

Maggie: Yeah, great question. So, I had my amputation surgery at Mass General. And my surgeon during one of my follow up visits, he invited a peer visitor in to meet with me who was a gentleman named Mike Benning, who is part of the ‘AmPower’ peer visitor program. And so I connected with him, and he actually worked for Hanger at the time. So he connected me with some prosthetists to get my first prosthesis. And eventually, I started doing peer visitation and was offered a job at Hanger as a business development manager.

Janet: Sometimes, these things just have a way to kind of work out and, and I’m sure it seems to bring you a lot of joy. You seem to be smiling quite a bit.

Maggie: It does. It brings me so much joy. I’m a lawyer by trade and I was working in New York City as an attorney. And honestly, not loving it, you know, really having a hard time with that and try to figure out what was my true passion and next step. And you know, obviously went through an awful circumstance in a traumatic injury, but it brought me to this place and to this group and this community.

Janet: So in terms of your prosthetic, where do you think the advancements are going and what would you like to see happen?

Maggie: Yeah, well, at least in the advocacy space, we’re actively, we’ve passed 5 bills so far through ‘So Every Body Can Move’ initiative.

Janet: Congratulations.

Maggie: Thank you so much. So, I can see a lot of forward momentum specifically in that space on getting coverage for things for exercise, physical activity. To your point earlier, so we can all be healthier, and need insurance less.

Janet: Well, isn’t that weird, like how that goes, right? Maybe a little money up front, a little less money later. You know, it’s just, it’s taking care of the bones of the house, right?

Maggie: Exactly, 100-percent. So, see a lot of forward movement with that and, you know, there’s new technologies coming out all the time. We also see a lot of new practitioners in the field that are really passionate about advocacy, which is awesome to see. And just, wanting to make this their lifelong career, really wanting to help people. You know, there’s a new kind of wave in the whole workspace in general about what people’s priorities are. So I think in the helping professions, we’re seeing more people wanting to be a part of that.

Janet: Right. I totally agree with you. There’s been a real seismic shift, I think within the last 5-, 7-years or so, which is pretty incredible. So, I think maybe my next question is… how can we help? How can we make those two projects work? Like, how can people get involved?

Maggie: Well, I think there’s just a general awareness of people with different abilities and making space for all of us. And, you know, we can all work on that.

Janet: Yeah. So, I just got one last question, what does this race mean to you?

Maggie: Yeah, it’s just really impactful to see so many people here with their running blades on, and you know, proud to be here, proud to show up and it feels like an inclusive space. So that means a lot to me, as a person with limb loss, but just as a person.

Janet: That’s wonderful. Maggie, it was such a pleasure to meet you today. Hope we get a chance to stay in touch and thank you.

— (sfx & music in) —

Carolyn: Maggie was the perfect person to kick-off this episode. I love how she found her passion and is using her background as a lawyer in her job as a Patient Advocate at the Hanger Clinic.

Janet: I enjoyed talking to Maggie, not only about her own story, but how it led her to help others going through the same traumatic process. And also how the “So Every Body Can Move” initiative is working to create insurance coverage for recreational prosthetics, especially for kids!

Carolyn: At this race, we saw kids, adults, runners with blades, wheelchairs, even on bicycles. We talked to one such racer who cycled into first place…

Janet: Yes, not bad for her first time at this race. And, I’ll add that it was not just any bike!

Carolyn: Let’s hear what Nancy has to say about her first experience and what it means to her…

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Interview #2 – Nancy / Race Participant

Janet: First question… So is this your first time at the Bionic Race?

Nancy: Yes.

Janet: And how did it go for you? It looks like you did pretty well.

Nancy: I came in first.

Janet: Congratulations.

Nancy: Thank you.

Janet: And what does this race mean to you?

Nancy: Well, I had no idea so many people would be here. I heard about it through my prosthetic MCOP– Medical Orthotics and Prosthetics. And they didn’t specify, it was said it was just for runners and walkers. And I am not able to walk 5K, but…

Janet: You have your trusty dusty bike.

Nancy: And it weighs 75 pounds.

Janet: Right.

Nancy: And then me. Right. So, people don’t realize, I was pedaling all that weight the whole time.

Janet: Do you think it was determination?

Nancy: Well, determination, because I ride regularly. I’m 72 years old.

Janet: Alright, just all amazing check, amazing check, and amazing check.

Nancy: And it’s also 28-speed tricycle, that’s why I can sit and talk to you. I will never fall over. (Janet: right). That’s, I will never get rid of this bike. (Janet: right). When I came, at first I thought the 1-mile was the event. So I rode that. And then, everyone was finished so fast. And then I stuck around for the 5-kilometer.

Janet: And you won that?

Nancy: Yeah! And that completely surprised me. Because I beat all the fast runners. I had to ask them to please move aside for an amputee.

Janet: Wow.

Nancy: Because they were blocking the whole road.

Janet: Oh my goodness, that’s too funny. And why don’t you give us a little bit of information on what you were saying about your traumatic injury…

Nancy: Okay, this is something I got. It’s experimental, but after 20-years of being an amputee, I could no longer hardly walk in my traditional prosthetic limb. I couldn’t even wear it sitting down. And so I went to New York City and there’s a surgeon there who, we got approval. It’s a custom thing. And at the time I was his number 12 and now he’s done like 55. It’s approved by the FDA now to do above knee. But there are not many of us who are below knee.

Janet: No. When I saw it, I was like, well, hello. Right. And it’s the first I’ve seen. Do you want to give the doctor a shout out?

Nancy:  Yeah! It’s Dr. Rozbruch of Hospital for Special Surgery.

Janet: Perfect. So did you have a good time today?

Nancy: I had a wonderful time.

Janet: What a great event to, like, go and see so many people also turn out, correct?

Nancy: That’s why I came. I was looking for my people, But the organizers were so very supportive, and this is a great event, and I will be back next year.

Janet: Terrific. Thank you so much. We appreciate you taking the time today.

— (sfx & music in) —

Carolyn: Nancy and her modified bike is just one example of the many who came to enjoy being part of the adaptive community on such a beautiful day.

Janet: I love her story and how that relatively new reconstructive surgery was able to get her back on her feet, and in this case, her bike too. We will provide a link on our website for that.

Carolyn: And now moving on to even newer technology, we noticed something being demo-ed on a table that we just had to stop and check out…

Janet: A company called Liberating Technologies was demonstrating how sensors can be used to control a prosthetic hand, but we were intrigued by another project they were working on. A prosthetic that can change from a walking foot to a running foot with just the turn of a dial…

Carolyn: We will definitely have links on our website for these, but meanwhile, let’s hear about this new technology, how it came about, and what it may mean to the future of prosthetics…

— (sfx & music out) —

Interview #3 – Todd Farrell / Liberating Technologies

Todd: I’m Todd Farrell, CEO of Liberating Technologies and we’re located out in Holliston, Massachusetts.

Janet: Terrific. And what does LTI do?

Todd: LTI primarily does government funded research and development. We focus on a number of different rehab technologies, but we specifically focus more on prosthetic and orthotic solutions.

Janet: And how did you get into this particular business… are you an engineer?

Todd: Good question. Yeah, I’m an engineer by training. So I actually made the mistake of being very focused when I was working on my PHD. I was really focused on robotic, particularly robotic upper limb prosthetics. This was about 20 or so years ago, and so I finished, and I thought, geez, this is great, you know, I’m working in this field that I love.

But then I went to look for jobs, and it turns out that at the time, there were only two companies in the entire United States that were doing this robotic upper limb technology. I got incredibly lucky that at that same time, one of the two companies, was, the one that I work for now, was actually hiring. They were just getting into this government funded R& D. I like to use the joke that I used to think lobbyists were bad people until they got me a job.

Janet: And now all of a sudden, not so bad.

Todd: Yeah, we had partnered with a defense contractor on another project, and they were able to, through some of their lobbying avenues, get a project that got us going. And from that point, we branched out on our own and did a lot of our own and now we’re the prime contractor on most of the projects that we do.

Janet: Now, can you talk a little bit about some of these contracts and stuff like that, or is it top secret? What are we talking about here?

Todd: No, very much not top secret. There’s a lot of it’s in the public domain and yeah, if there’s any secrets I can’t share, I won’t. How about that? I’ll make you that deal.

Janet: All right. Fair enough. So, what kind of prosthetics do you do these days? You know, you said, at least when you were getting out of school, you were kind of focused at the, the upper body. So I see though that you’ve got something about the lower body too? I guess no part is off limits, is that right?

Todd: Very true. Yeah, we do focus mostly in prosthetics, a little bit in orthotics. But yeah, very much arms and legs is our focus. We’ve got, a foot that has 2 modes to it.

Janet: Can you explain what, oh, 2 modes, all right, 2 modes.

Todd: Yeah, there’s walking and then running. So if you look around here, you see a lot of individuals that will be wearing running legs, which are great for running, but they don’t tend to be very stable for if you have to stand for a long period of time. Likewise, a walking foot is great, nice and stable for lower activity…

Janet: …but not for running. Right.

Todd: Right. And so the idea with this foot is that in a single package, you can have both modes and with a push of a button and a turn of a dial, you can go from walking mode to running mode and back. One of the big motivations for that was because running feet are typically not reimbursed by insurance.

Janet: We knew this inherently. And then Carolyn and I were walking around, and I turned to her, and I was like, ‘what the what?’ And I, I knew it, but I, it’s just heartbreaking. I just don’t understand it. But I’m sorry, I didn’t mean to interrupt, go ahead.

Todd: So one of the big motivations of that having the 2 modes in 1 foot is to be able to have it be reimbursed by insurance. So the idea is you can get a walking foot reimbursed. So this foot, for example, could be reimbursed under existing codes for walking feet. But then, ‘oh, by the way,’ you can have running foot in the same device.

Janet: Do you think insurance will start, I mean you just said that if it’s a dual prosthetic, they would probably go and pay for it, versus maybe paying for 2, am I understanding that correctly?

Todd: Well I think right now, most of the time, as the laws exist today, insurance will pay for 1, they’ll pay for your walking foot. There’s a big push to get the running feet also paid for. So eventually, hopefully, that does become a thing that’s covered. The one advantage we would have in our design is that it’s, it’s in one package. So you wouldn’t have to take your running leg off and put your walking leg on. It’s all in one spot.

Janet: Yeah, we talked to a woman earlier that we didn’t record, but she had said that her daughter in 3rd grade, she wanted to get her a running blade, and insurance just wouldn’t cover it. She’s a kid. She’s a kid! They need to run. I mean, you know, a 7-year-old needs to run. And needs to run with their friends. So, yeah…

Todd: This movement started with kids. So right now it’s called ‘So Every Body Can Move,’ but it actually started as ‘So Kids Can Move’ because, frankly, it’s an easier ask because you’re only forcing insurance to cover for children when the population is as big, but I think the kids kind of got some traction and then it has really taken off and they’ve now been able to expand it to everybody. And it makes a lot of sense. People, kids, adults as well, want to be physically active.

Janet: And it just only helps insurance at the end of the day.

Todd: For sure. Oh, absolutely. Yeah. I mean, don’t get me wrong, they’re not cheap, but yeah, the long-term health benefits would outweigh the cost of a lot of these devices.

Janet: So what do you see is the future of prosthetics and what do you want to see happen? And what are your thoughts on that?

Todd: Yeah, I think there is definitely a big push into more of this bionic space of individuals with powered legs, for example, that can actually lift them up out of a chair. You know, and there’s still challenges. One of the projects that we have going on is a clinical trial looking at powered legs, for example. Not our own, these are other manufacturers powered legs and how they influence different populations, different groups.

So very active individuals we’re finding ‘eh, maybe don’t get as much benefit because they are active and able to do a lot with what they have,’ but some of the older individuals— and this is all very, very preliminary – are showing some real benefits of being able to get lifted up out of a chair. And so they’re showing signs, again very early, of being able to increase their activity and their participation in the community.

Janet: Right, it’s fascinating and I think it’s a good time for this type of change. You seem like a good person to ask: if there’s anything you want designers to know or engineers to know. It’s not just designers, it’s also people with different types of human conditions that come to Inclusive Designers Podcast. So now like, if you had, you know, all the money, no holds barred, a better world. What do you see happening?

Todd: Well, I think as far as advising other engineers, you know, I don’t usually like to start with, ‘We’ve made a bunch of mistakes,’ but we have. I mean, we’ve learned…

Janet: …but sometimes you learn a lot from your mistakes. I tell people that all the time. And I, I’ve learned a lot (laughs).

Todd: Oh, for sure. And I think one of the things that we figured out— I wish it was earlier than we did frankly— is engaging the end users. So, as an engineer, we sit there and we want to make the strongest, the fastest, the pick your adjective. (laughs).

So for all of our projects, we want focus groups when we kick them off with, with end users and a lot of times with clinicians. And we had a powered hand orthosis, for example. And again, we’re doing this engineering thing. We’re going to make it fast and we’re going to make it strong. And we ran this expert panel, and it came back that it needed to be light was the number one, and by more than double as important as any other factor that we were rating. And we thought, ‘huh, why is that?’

And the answer was, ‘well, you can have the strongest, fastest thing, but if it’s hanging off the side of your leg and you can’t get it up to your face, to feed yourself or brush your hair or button a shirt, it doesn’t matter. And so that’s, on the advice front, that would be the thing I would say is definitely engage both clinicians and end users early.

Janet: It’s such an important piece that we try to teach both the students that I have and also in terms of like when we do even Trauma-informed Design, we really ask that like everybody be at that table. And it’s known, but it’s so easy to kind of forget. And so Todd, one last question. What does this bionic race mean to you today? And why are you here?

Todd: So we’re here, on one hand to represent our company and to have a nice little team building event, but more to be a part of the community. I mean, it really is amazing to see all different people coming together for one common cause. You know, get a little exercise for sure, that’s a lot of fun, but also to be able to raise money for a wonderful cause is why we’re here.

Janet: Fantastic. Todd, thank you so much.

Todd: Appreciate it. Thanks so much. It was a pleasure.

— (sfx & music in) —

Carolyn: The creation of a ‘bi-modal’ prosthetic foot would be amazing…

Janet: Yes! I love that it would be covered by insurance too.

Carolyn: You might say, they‘re putting their ‘best foot’ forward…

Janet: Oh boy, I was wondering when you were going to work in a pun, and there it is!

Carolyn: You know I couldn’t resist…  but, let’s keep moving forward. Next, we visited the booth of an organization whose ‘sole’ purpose is to support athletes in adaptive sports.

Janet: (laughs) ‘sole purpose’? Right. Another pun so soon (Carolyn: oh yeah), wow. (laughs)

But yes, I spoke to Bob Crescenzo with Achilles International… a totally inclusive group for people with any kind of needs and for many sports activities, in this case, running.

Carolyn: We’ll let Bob explain a little more about them and what having such a supportive organization like this available has meant to him…

— (sfx & music out) —

Interview #4 – Bob Crescenzo / Achilles International

Janet: Can you tell me a little bit about Achilles International and what’s your role there?

Bob: Well, Achilles International is a running group, a running club for people who have any kind of needs. It’s a totally inclusive group for people with amputations, with blindness, with inability to walk, with any kind of needs. And it’s a supportive organization that provides athletic outlets through running, walking, wheelchair racing, hand bikes, to people who might not be able to continue in their athletic career, or even have one.

It also provides enormous socialization and support to people who might be a little isolated because of their situation. It’s a wonderful organization. I’ve been a member for almost 40 years. I started when the New York chapter began as a guide and a volunteer. (Janet: wow). And about 25 years ago, I had some medical situations that changed my ability to run, and I needed guides.

So, they convinced me to become an athlete. So I went from a volunteer guide to becoming an athlete. And at that time I was still able to run, and they guided me through five or six marathons. And, I had to stop running at some point. And I moved to Boston about three years ago. And wanted to seek out Achilles again because I wanted to be involved.

And the chapter here is wonderful. The group is wonderful. The team is great. And I’m an older guy. I’m turning 73-years old. And I think I’m the oldest person on the team as an athlete. And it’s my desire to keep walking. I walk now with canes and support. And it keeps me in the game. I’m still an athlete. And it’s because of Achilles.

Janet: That’s amazing. I mean, you have a really unique perspective because you’ve been on both sides of the coin, right? And so what would you say is your biggest learning experience that maybe you should have known back when you were teaching, versus now. Can you give us a little insight on that?

Bob: Sure. I think the most important thing that I’ve learned— and it’s hard to learn, especially when you’re a competitive athlete as an adult— is to ask for help, and to be able to recognize that you can’t do everything on your own. And sometimes in order to continue in the different levels that I’ve continued, I have to have other people helping me. And asking for help and recognizing that Achilles was the group, and I was already there. I thought, well, why didn’t I figure this out a year ago? So… (laughs).

Janet: Right, I wish there was something out there. (laughs).

Bob: I was a little stubborn and they finally said, you have to be an athlete. We will help you. And, and they did. And even when I had to stop running and had to take a break, it never left me. The athletic competitive experience running in races, walking in races now, just being in the community is wonderful. And Achilles has made that possible.

So I would say to everyone, or anyone, ask for help. Recognize that there are wonderful people to help you, and that you can be in the community— any community you want to be— if you get someone to bring you in and guide you. As things change, if you learn to be accepting of yourself and your situation, you can be accepting of help.

Janet: I love that. That’s really terrific. So that was quite brilliant of you. So, let me ask you just a couple of last questions here. What does this race mean to you?

Bob: So this race, I walked this race last year. And it was the first 5K race that I was in and in a number of years, getting back into everything in Boston. And what it means to me is that I’m still viable, that I am functional, that I am running, even though I’m walking, it’s running to me. And all I’ve had to do is shift all of my running thinking, to walking is running. And having guides so that I don’t trip or fall or lose my way. It’s just my way of running.

And so this race, it reminds me of what can be accomplished. And it reminds me that there’s always opportunities. And I literally dragged myself out of a week of a very difficult medical situation to be here today. And I would have crawled here. It’s that important to be in the game, particularly at my age, and I, I just love, just the feeling of it.

Janet: Somebody just said to us earlier today about finding their peeps, you know? And I think that that’s such an important piece in life right now. And so, have you found your peeps? I saw you standing over there with like a good half a dozen of Achilles International people.

Bob: The Boston chapter is so remarkably supportive. The volunteers, the guides, Joe Lamar, Boston Athletic Association, all the Bionic folks. The community is just so accepting and supportive. And I didn’t know that people would accept me, because I am different than a lot of the folks here, age-wise and experience-wise. And it’s like I found my peeps. It’s just wonderful. And to be here today has lifted me up out of my situation that, it’ll last for weeks. (laughs).

Janet: That’s fantastic. And any last-minute words?

Bob: If you know anyone who is interested as an athlete who has any doubt about their ability, come out to Achilles, any Achilles chapter. If you’re in Boston come to the Boston chapter, find a chapter. And just don’t let anything hold you back. We’re here to help everyone. And secondly if you have any talent, you like people, you want to guide or volunteer, there’s no better place to have fun, and exercise, and be with people.

Janet: You know, I have to tell you, I also teach adaptive skiing in Vermont, right? So it’s Vermont Adaptive. So does Achilles also do that or is it just basically running?

Bob: So it’s primarily running, but we support adaptive basketball, adaptive baseball, there’s a variety of programs internationally. And it’s important for everyone in the adaptive community to come together and share resources. Because there are many programs, and they need to come together.

Janet: I really appreciate you talking to us today. This was a real pleasure. Thank you so much.

Bob: Thank you so much. I appreciate it.

— (sfx & music in) —

Janet: Bob was very inspiring. And such a good spokesperson for adaptive sports. Along with mobility issues, Bob also mentioned he has hearing issues. So of course, we asked Bob’s opinion on designing for hearing and other limitations …

Carolyn: So here’s what Bob has to say about that…

— (sfx and music out) —

Bob: This is just a thought. So, the Americans with Disability Act has done remarkably well for physical issues that are more obvious, wheelchairs, ramps, and…

Janet: Right, it drives me nuts that the symbol for disability is just the wheelchair.

Bob: And that’s what I was going to say. In designing spaces. So in addition to my mobility issues and my balance issues, I have very limited hearing. And so that the ability to process information is hard. And there are a lot of people that have invisible or less obvious limitations. And in any kind of building, just for visually impaired people, I think still have a lot of difficulty, even if they have a guide dog, there’s not a lot of sense of understanding.

Even though websites might be ADA compliant, is that website available at that place when the person is trying to order something. And also for hearing impaired people, and the people with developmental disabilities who don’t look like they have developmental disabilities.

Janet: Right, like you said, the invisible.

Bob: And so if spaces can be a design to be inclusive of those kinds of issues. And some of those things are not as obvious as ramps or doorways. And just movement, the ability to move. The pattern on the floor. The lighting. The acoustics. All right.

And many people have sensitivities to all sorts of stimulus, and you could build a perfectly beautiful building or diner or whatever you’re building, and the person can go in and be triggered. So if it’s a safe environment, well make it a safe environment as best you can, because there are a lot of places that aren’t safe, and people adapt.

Janet: Thank you so much.

Bob: Thank you so much.

— (sfx and music in) —

Janet: I second what Bob said about keeping the more invisible or less obvious limitations in mind when designing. Remember, paying attention to how lighting, acoustics and wayfinding can improve a space and make a big difference.

Carolyn: So true. Our next interview deals with the important work being done in rehab, especially for amputees.

Janet: I talked with Dr David Crandell from Spaulding. They work hard to get their patients back ‘on track’ for a race like this…

Carolyn: (laughs) Back on track, that’s a really good one.

Janet: I couldn’t resist…

Carolyn: I love it, I’m rubbing off on you… Meanwhile, here is your interview with Dr David Crandell from Spaulding…

— (sfx and music out) —

Interview #5 Dr David Crandell / Spaulding Rehab

Dr David: So, as the medical director for the amputee program, we have a comprehensive program that works with new amputees. I even get a chance to actually meet some individuals who are about to have an amputation, so even before they become an amputee. And you know, we have Spaulding Rehab, which is (Janet: worldwide).

And so, you know, we have the ability to work with patients, help them during that early post-surgical recovery, and really set the stage for the prosthetic phase of their rehab, if they’re going to be capable. And so we run an outpatient clinic and we follow patients longitudinally, so we’ll be able to follow them because once you become an amputee, you typically stay an amputee.

Janet: Typically.

Dr David: Typically. So therefore we’re following people over time. And again, you know, we’re obviously want to get them into good technology and good training, but also engaging in the community and realizing they can do a lot.

And, you know, to see some of our patients who have undergone, you know, rehabilitation to not only get back to home and family, but to get back into active lifestyles is really important. So we’re trying to promote that activity. And so we’re excited to be a very large team here. I think we are the largest number of participants at the event. (Janet: really!). And, this is my 6^th year… (Janet: wow!).

One of the, the quotes that I say is that ‘an amputation shapes you, but it doesn’t define you’ (Janet: nice). You’re defined by who you are, not by the fact you’re missing a part. (Janet: no). And you know, this is a great event because it embodies this good alignment between the encouragement of people to be active and participate, not only in a running event, but it doesn’t matter how you arrive, it’s that you’re participating. And we celebrate everybody’s victories, (Janet: right), and that’s what it’s about.

Janet: Now tell me just really quickly, you’re holding a flamingo that is decorated. And we’ll put the picture on the website.

Dr David: Right, so it’s a typical lawn flamingo that has been artistically modified. April is Limb Loss Awareness Month, we support through the Amputee Coalition. And so one of the nurse managers, her entry into this year’s Flamingo Decorating Contest, which had a number of submissions, and this is the winner.

And we said that the winner of the test gets to come and represent Team Flamingo Spaulding Rehab at the Bionic. And so this clearly manifests the, uh, the spirit of the event, and I’m hoping I get to keep it at the end, but okay.

Janet: Yeah, no, we can’t wait to come again next year, and be like you, be here every year.

Dr David: You can, even if you don’t work at Spaulding, you can be a member of Team Flamingo.

Janet: Team Flamingo, I can? All right, so let me ask you, how do I become part of Team Flamingo?

Dr David: So when you sign up for the Bionic, you pick the team Spaulding and then you can get on it.

Janet: Oh, I will look into that. And we were going to put it on our website: InclusiveDesigners.com and allow for people to donate to, not only to the Bionic, but also to Team Flamingo.

Dr David: Right.

Janet: Is there anything else that you would like to add about the race and what it means to you, or what your work means to you.

Dr David: Right. Some of the money that’s actually raised, then gets used to help people get into prosthesis. Typically, they didn’t do it this year, but there’s a foundation that takes some of the resources that are generated, and it goes directly back to helping individuals. So that’s another thing people feel like their participation is only for their own benefit, but it really is like paying it forward, because some of the technology is not covered by insurance…

Janet: Exactly. Well, that’s a running theme today, and I was just going to ask you about that and how we all can get involved.

Dr David: So there’s a national movement, and it’s partly through the Amputee Coalition, but we’re trying to get through each state to have insurance pay for adaptive prostheses. There are now 5 states that have passed legislation. So insurance not only has to pay for their standard leg, but they a leg that they can use to either run or access other activities.

And Massachusetts right now, there’s pending legislation, and a number of our staff, including myself, have testified for the for the state committees. And it’s now working its way through the committees, and we hope that they’re going to have a positive vote. Because It’s hard enough to get patients to remain engaged in challenge, but if they run into the financial constraint, and we’re talking about several thousands of dollars sometimes.

Janet: Right. A woman told us earlier today that she had to go down to Tennessee, and you know, she’s like, airfare, and hotel, associated costs with everything like that, that was just too much…

Dr David: You know, if the legislation passes in Massachusetts and in other states, it’ll lower the barrier so that they’re really talking about, one of the parents of a young child who became an amputee due to cancer. The insurance wouldn’t cover it because they said the kid doesn’t need to run.

Janet: That was the same woman that we were talking to.

Dr David: Did they come here? (Janet: yeah). So, I told her to come.

Janet: Yeah. We didn’t interview her, but it was good to hear her perspective on it.

Dr David: Right. And so, people need to stay active. (Janet: what?), we need to support all this effort.

Janet: That’s fantastic. So we are a designer podcast at our heart, but of course it’s all about inclusivity. So what do you see are some of the barriers? What do you see are some of the things, I mean, besides everything, what do you see are things where you think to yourself, Lord, why can’t they get that act together?

Dr David: So, one of my feelings is if I had grown up in like Eastern Europe in the turn of the century, I would have been a matchmaker. So I’m always trying to make connections between individuals or activities.

So one of the things, I do some work with MIT. (Janet: Nice). And they have an upper-level design class. It’s one of the most popular classes at MIT. They take 150 students, they give them 75-hundred bucks, and about 20-million-dollars worth of MIT support. And they have to come up with products.

And so, myself and some of our staff, have actually gone and been mentors in the class and give them ideas because they’re really smart. And it’s a team approach. But they don’t have the clinical experience. So we give them examples of individuals with disabilities and that’s how they kind of build it out. And sometimes they have products that they need testing. They’ll bring them over to the hospital. So it’s, it’s an engagement.

Janet: … it’s a community engagement.

Dr David: Right. So I think we have a number of occupational therapists here, I don’t know a lot about PTs, but I think they’re functional engineers. And they’re always coming up with different ways to modify, patients come up with their own individual things. And so that creates a process of design, which comes down to the three basic steps: ideation, model, and test.

And so, you know, in our rehab setting, we try to make those connections so that they can come up with different things. And that, I love that opportunity to try to come up with unique solutions because it’s part of the human condition, but even those with people with disabilities need a way to solve their individual problems.

Janet: Right, we talk about it a lot at the Boston Architectural College, right? I teach there. I teach Biophilia, and Trauma-informed Design. And we talk about the idea of getting everybody in that room, and making sure that that conversation, we even had it a couple times today.

Dr David: I’ve been advocating for years to build a makerspace within the hospital. So that you would have the ability to take patients, staff and researchers working in the collaborative space. (Janet: I love that!). Space is a high priority, but you can still try to make it work.

Janet: I know. Well, I’ve been through the facility a few times. So I can see where we can carve out a couple of spaces. (David: okay, cool). And then what about any kind of environmental design that you might want to see changed?

Dr David: Well, if you’ve been to Spaulding, you know that that was one of the first hospitals built in Boston in decades. And they did incorporate a lot of engineering to make it more sustainable. There’s a lot of natural light. These are built in efficiencies. So I think, you know, if you take that approach, you can build it into the work that you’re doing. (Janet: right).

So, you know, I think the example, people come and see the building, and it’s a nice building. (Janet: it’s a beautiful building). It’s a beautiful building, but it’s obviously the work that’s done in the building… (Janet: that makes a difference), that makes a difference.

Janet: Right, exactly. Thank you so much for talking with us today. This was a really terrific interview.  Thank you.

— (sfx and music in) —

Carolyn: It’s really so great that the team at Spaulding helps patients— not only get back to home and family— but also encourages them to get back into an active lifestyle in the community.

Janet: I love that some of the money that they raise gets used to fund what insurance doesn’t cover– the cost of prosthetics and even the travel to get them can really add up…

Carolyn: As you said, it was a ‘running theme’ during our interviews…

Janet: I know, it was an unintentional pun when I said it to him… but what they do is really so great. And coming to the race every year lets them continue that effort— as well as have some fun alongside patients and outside of their beautifully well-designed building.

Carolyn: And speaking of the race, it’s time we hear from one of its creators… we stole Will Borden away from his event to learn more about this race and his group, the Bionic Project…

Janet: It was their vision to bring together people of all abilities to engage in sport, and now it’s an annual event on two coasts, in Boston and in San Francisco, that draws thousands of participants.

Carolyn: This adaptive sport community has grown and continues to get bigger every year. Let’s hear just what these races mean to the group that started it all…

— (sfx and music out) —

Interview #6 – Will Borden / Bionic Project

Will: My name is Will Borden. I am currently the director of academic technology at the Shady Hill School, but I’m also the President and Founder of the Bionic Project.

Janet: Great. It was a real nice showing today.

Will: Yeah, it was an incredible showing. We had over a thousand participants, a thousand registered runners. So the race has grown tremendously over the last few years. And then we had actually over 65 adaptive athletes, which is definitely a record for us and is quite a significant number in a road race. So we’re probably most proud of that, of all of our statistics.

Janet: Right, if you keep seeing the success growing, do you think you’re going to be able enough to keep it in Harvard Square, do you think, or how do you think that’s going to go?

Will: Yeah, we’ll have to see how it grows. I mean, I love kind of the intimacy of this setting. I think Harvard Square is great, and we’re near a lot of great research collaborators that we’ve worked with at both Harvard and MIT, so I’d love to keep the race here. But we’re also growing. I mean, we have a race out in San Francisco in the Bay Area. And some of that growth kind of parallels the growth of our education program where we go into schools and bring adaptive athletes to dismantle disability bias.

Janet: I love that. So anyways……give us your thoughts about how today went, you know, maybe expand a little bit on that.

Will: Yeah, I mean, I think that one of the things that’s made me most proud is just the community here that has grown. I’ve seen some people here come back year after year. I saw new faces today. I saw lots of kids and some kids with physical disabilities that were, you know, amongst peers in a way that doesn’t always happen. You know, that’s moving for us, and I think there’s some great athletes that can kind of pave the way for others. Show their stuff.

Janet: You know, it’s funny. There has been a couple of themes that we’ve seen today. One is the fact that insurance doesn’t pay for prosthetics which is just outrageous. But the other one is finding your peeps, right? People love coming in to find their peeps. And, because maybe you knew people, like, in rehab, or you know, wherever you work, and then coming together for the same cause.

Will: Yeah, I wholeheartedly agree with that. There’s a lot of joy in community and there’s something about doing something physical, right? Like getting out and moving our bodies, right? It’s great. There’s a lot of conferences, there’s a lot of gatherings, you know, but there’s something nice about, you know, engaging in sport together. I think sport breaks down barriers and has a way of bringing people together like almost nothing else.

Janet: Right. Well, especially also, like you said, I mean, you’re now moving together, right? It’s pretty incredible. So, is there any last-minute thoughts before we leave today?

Will: Yeah. I mean, I think the thing that we’re excited about the most in the future is I was saying a little bit earlier, it’s our education program. You know, we’ve been in 34 schools in Massachusetts, worked with probably 10-thousand students, and to be able to work with them to think about how to create a more inclusive environment at their schools, to kind of break down some of people’s misperceptions about physical disability and really to have a chance just to answer questions.

I think so much of it is based on fear, right? Things we don’t know, things that aren’t familiar to us can be scary. And there’s one of two reactions you tend to get is one is a super curious person that rushes up to you and says, ‘happened to you? Oh my God,’ which is cute and sweet, but sometimes, you know, depending on your mood can be a lot to handle.

And then sometimes you see people that are embarrassed, right? That are shy, that they look away. If you see someone in a wheelchair, sometimes we just look the other way and we forget to connect with them as a person. And I think that’s the most important thing. And kids in school are socializing. They’re learning how to make friends. And we want to be as inclusive in that as possible.

Janet: That’s really amazing. I love that idea. I guess maybe my next question is, how do you see that education looking like? Do you have thoughts on that yet? I mean, are we at that stage?

Will: Yeah, what we try and do is, there’s a lot of assemblies, right? Schools can easily get speakers to come in. And I think that’s helpful, but there’s really something about having the chance to be in the classroom with the students…

Janet: Right, it’s just more intimate.

Will: Exactly. And the other thing we do is at the end of all of our educational days, we spend the afternoon playing adaptive soccer, amputee soccer, with Nico and some of the guys that you saw earlier. And it gives them a chance to see like, ‘wow, this sport is really interesting.’ It’s soccer. Soccer is so engaging for everyone. It’s the most popular sport in the world.

But this is a different way to play it with a little bit of different rules and different equipment. And it’s really fun. And I found that, you know, kids will start kind of hesitant in the beginning. And then are just tearing around the field at the end and asking Nico and Jovan for their autographs at the end. So it’s a very cool connection.

Janet: That is really terrific. Well, great. Thank you so much. I know you got to keep moving and grooving today because you’ve got a lot of stuff going on. I just want to thank you for inviting us today and then also for what a wonderful event. You should be very proud of yourself.

Will: You’re very kind to say that. I’m glad you guys are here.

Janet: Thank you.

— (sfx and music in) —

Carolyn: As we just learned, Will’s other passion is the Bionic Projects’ education programs in schools, with the goal of helping to create more inclusive environments.

Janet: So naturally, I had to ask him his thoughts about Trauma-informed Design in schools, and beyond…

Carolyn: Here is what Will had to say about that…

— (sfx and music out) —

Janet: So I just wanted to let you know that I am a co-founder of an organization called ‘Trauma-informed Design Society’ and we created a tool for K-12 for evaluating schools and letting them see if they’re Trauma-informed Design efficient or not efficient. And it helps the, both the teachers and the stakeholders and also the designers come together. And so I’m kind of interested in how, with that in mind, do you have any input with the environment in mind? What are your thoughts on that?

Will: Yeah, I think we spend a lot of time during our classroom sessions with students thinking about the environment and thinking about trying to make it more inclusive. One of the lessons that we have specifically is about sports stadiums and how to make them more accessible. And I think when people hear that, they traditionally think of like, ‘okay, are there ramps? You know, can people get inside the stadium?’

And of course that’s important, but we’re trying to get students to think about is what’s the actual experience like, if you have some kind of physical disability or visual impairment. And I think there’s, there’s a lot of room for growth in that. Like everyone kind of wants to be, when you’re at a live event, kind of in the heart of the event. And very often…

Janet: …you’re on the sidelines and not in the, right…

Will: … for people with disabilities are off to the side, right? Or is there engaging stuff around them. Can you actually sit with your friends? Could you sit with your team?

Janet: Well, you do, you want to be able to sit with your friend, otherwise you’re separated essentially.

Will: Exactly. So I think students have really interesting ways of thinking about that… How could we make stadiums more accessible? Could seats be more movable? Why are they so fixed? Like could we change sections around? You know, kind of, are there more ambassadors that can help kind of smooth some of these things over and greet people when they come. So it’s a very interesting to think about and kind of really important when designs are being hatched, right? We have a new soccer stadium that’s being built in Boston in the next couple of years, and we’re trying to kind of influence what that might look like.

Janet: Well, if you need any help, you know where to find me.

Will: Exactly. Exactly. I will give you a call for sure.

Janet: All right. Well, thank you again so much. Thank you so much for today. Have a great afternoon and congratulations on a job well done. Thank you.

Will: Thank you for being here

— (sfx and music in) —

Janet: Will touched upon the concept of making stadiums more inclusive. We were intrigued by that and focused on it a lot more in our panel discussion with Will and our other experts.

Carolyn: They also talk about how they bring the stars of adaptive sports into schools to help kids understand; having a disability doesn’t have to be limiting.

Janet: If you want to learn more about what is being done globally to make stadiums more inclusive, take a listen to our episode on ‘Designing for Bespoke Bodies’ …

Carolyn: So we are coming to the end of our marathon of interviews, but we couldn’t leave before talking to one more very special participant.

Janet: She is truly one of the most incredible people we talked to at the race…

Carolyn: so we are thrilled to introduce you to Tatiana Indica Tudor…

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Interview #7 – Tatiana Indica Tudor / Race Participant

Janet: So now what brings you here today to the Bionic Race?

Indica: Well, a year and a month ago I was in a horrific accident that I was not supposed to live through. Um, I was ejected from a vehicle and run over by a semi-truck. I broke almost every bone in my body and, no one thought a year and a month later I’d even be close to this. No one thought I’d be living or talking or walking or anything like this.

But the moment I knew I can reach something, or I have that, that process in my mind, I’m, nothing can stop me. Like, I don’t care if you tell me not to walk, I will walk. I will try. I will get up. I will do whatever. And prior to this, I was a runway model. So like my legs and walking and doing everything was my life. And I’ve always been really open about my health conditions and everything.

So I wanted to use this opportunity to show light to something that is so beautiful and inclusive and things that we need in life. Like it’s just, we’re all different in our own ways, but we’re all beautiful in our own ways. And we just need a little bit more inclusivity to get it. And if I can join a race and talk, and at least do this for me, like, I crossed the finish line. I’m grateful.

Janet: Well, you didn’t just cross the finish line….

Indica: Well, when I came over here and I realized I heard my name being called and the fact that I won an award was just…

Janet: …now what did you win?

Indica: I have no idea. (both laugh). Actually, I did fall.

Janet: You fell? I didn’t know. Oh.

Indica: 500-feet before the finish line and kept going. My doctor and a lot of my PT and OT people came beside me, held my hands, and we all walked and got me to the end. And, for me, I just, I just wanted to do it. I wanted people to see like, you can do anything. Even if a doctor tells you, ‘Hey, you may not be able to do this.’ Don’t listen to him. You probably can. Like, your story isn’t just one way. You can make it whatever way. You can change it. and when I crossed, it was just, all I could do was cry, honestly.

Janet: Well it’s been such a journey for you for over the year…

Indica: I worked…

Janet: You worked really damn hard…

Indica: Yeah, I, every single day for a year. I’ve gone through over 50 surgeries. I just finished healing. I’m trying my best and I’m always going to try my best

Janet: Yeah. Do you have any last-minute thoughts on today?

Indica: No matter what you’re going through, even if it might seem like it’s the hardest day in your life, just keep pushing because even when you want to give up, there’s a little bit left in you that can get you to that finish line. You just got to dig and find that and do whatever you can, honestly, and never let anyone tell you that you can’t do something if you think you can.

Janet: Well, you’re the living embodiment of that for today and for the race. This is our last interview of the day, and it was, it was lovely and, best for last. Exactly. Thank you so much for taking the time.

Indica: Yeah. I, I have to give a shout out to Spaulding in Charlestown. My doctor, Dr. Crandell, and my prosthetician— I can’t even say the word— but Hanger in Braintree, Dan, gave me my legs to get back up, and Spaulding taught me how to get back up and push. And I can’t thank anybody except for, you know, God for keeping me back on this earth and giving me another chance at life. So thank you to life. Thank you for everything.

Janet: And thank you for doing the interview today and have a great rest of your afternoon

Indica: And you as well. Thank you.

Janet: Thank you.

— (sfx and music in) —

Outro:

Carolyn: All she had to go through might have been discouraging to someone else, but she is such an amazing and positive person. And I loved her message, to encourage people to try their best to be their best.

Janet: And we join her in the shout-outs to the Hanger Clinic; Spaulding Rehab; and the Bionic Project, for all they do to help so many reach the finish lines in their own personal marathons.

Carolyn: As usual, we’ll be posting links to these organizations, and the tremendous advancements taking place in bionic prosthetics, all on our ‘resources’ page on our website.

Janet: Absolutely! And speaking of which, if you want to learn more about what these groups are doing, be sure to take a listen to our other episode. “Designing for Bespoke Bodies: Bionic Prosthetics and Beyond” … and you’ll find all that and more on our website at: Inclusive-Designers-dot-com.

Carolyn: That’s: Inclusive-Designers-dot-com…

Janet: A big thank you to everyone involved in the Bionic Race, and, of course, to all of you for listening.

Carolyn: Along with all the regular places you get your podcasts— such as Apple, Spotify, and Pandora— we are now on YouTube Music which replaced Google Podcasts. You can also find us on our regular YouTube Channel. What hasn’t changed? Our name – Inclusive Designers Podcast.

And of course, if you like what you hear, feel free to go to our website and hit that Patreon Button, or the link to our GoFundMe Page.

Janet: Yes, please do. We look forward to your feedback as well. Send us an email at info@InclusiveDesigners.com and let us know what you think.

Carolyn: Or, you have any questions or suggestions for topics we should be covering in upcoming shows!

Janet: As our motto says: ’Stay Well…and Stay Well Informed’!

As always, thank you for stopping by. We’ll see you next time.

Carolyn: Yes, thanks again!

(Music up and fade out)