Designing for Bespoke Bodies: Bionic Prosthetics & Beyond (Season 6, Episode 1)

Designing for Bespoke Bodies: Bionic Prosthetics & Beyond  (Season 6, Episode 1)
Panel Guests: Will Borden; Dana Ross Rogers: Molly Jarman; Maria Villafranca

(Music / Open)

Janet: In this series we will be discussing specific examples of design techniques that 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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(Music / Intro)

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

Carolyn: And I am your moderator, Carolyn Robbins…

Janet: As we start another season, we have an episode that I am so proud of…. it combines disability equity and trauma-informed design with new Bionic technologies for amputees!

Carolyn: I wholeheartedly agree, this is such a great topic! There are so many new innovations in the world of Bionics for survivors of traumatic injuries and limb loss.

Janet: Today you’ll hear from some of the key players in this emerging science. They are going to share some really cool stuff in the works for bionics for humans. And how important it is to keep the end-user’s perspective in mind when re-thinking prosthetics, as well as when designing environments for them.

Let’s get to the introductions… Carolyn, take it away!

Carolyn: You got it… Our panel includes four very inspiring individuals.

First up is Will Borden. He is the founder and president of the Bionic Project. As an avid runner and below the knee amputee himself, he was driven to create events that welcome athletes of all abilities. The Bionic Race is now in its seventh year, and is run annually in Boston in the spring, and San Francisco in the fall.

Will also collaborates with the Biomechatronics Lab at MIT to help test their innovations in mobility, like their robotic ankle.

Also joining us from the Bionic Project is Dana Ross Rogers, who is their executive director. After 20 years of teaching, Dana now leads their educational group, and mentors teachers in creating more inclusive classroom environments and lesson plans.

Janet: Fun Fact… I just learned she was an Adaptive Ski Instructor in Colorado! This is a passion we both share, except I teach it in Vermont, of course.

Carolyn: Yes, you do! And I know you love it.

Next up is Molly Jarman from the ‘Stepping Strong Center for Trauma Innovation.’ Molly is the Director of their Injury Prevention Program. Stepping Strong focuses on trauma care for traumatic injuries, like limb loss, through recovery, and beyond. They promote the benefits of innovation, prevention and intervention.

According to their website…The goal is to transform trauma care by partnering with medical and community advocates in order to move research from the bench to the bedside. And, as their name implies, to help those with traumatic injuries to ‘step strong’ again.

Janet: We are thrilled that Molly is here – to offer her insight on the incredible breakthroughs in research and new medical technologies.

Carolyn: And last, but by no means, or in any way least… we have Maria Villafranca, the Executive Director of CoDesign Collaborative. Their mission is to inspire social change through the transformative power of design. They produce educational programs for both youth and adults, publications on design impact, and also exhibitions… the most recent being, ‘Bespoke Bodies, the Design and Craft of Prosthetics’

Janet: I love their book on ‘Bespoke Bodies’ too … it inspired me. I recommend it to anyone and everyone. And a shout out to them for helping us pull this panel together since they partner with both of these amazing groups, the Bionic Project and Stepping Strong.

Each of our guests has so much to share… on some amazing new innovations, and even on – wait for it— designing for more inclusive stadiums!

Carolyn:  … before we give too much away, we better stop talking, and let our experts tell you more, in their own words.

Janet: Yes, yes we should. (laughs).

Carolyn:  And with that, here is our discussion with Will, Dana, Molly and Maria, for a peek into the world where Bionics and Inclusive Design meet…

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(Music / Interview)

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Janet: Hello and welcome to Inclusive Designers Podcast. I am your host, Janet Roche. Today, we’ve got a great panel of individuals who are working very hard to create equity within the amputee world. And with that, I’m going to allow everybody to introduce themselves real quickly so listeners can start to get to know their voices. Dana, I’m going to kick it off to you first.

Dana: Thanks, Janet. Hi, I’m Dana Ross Rogers. I’m the Executive Director of the Bionic Project.

Will: My name is Will Borden, and I’m the founder of the Bionic Project.

Molly: And I’m Molly Jarmon, I’m the Director of Injury Prevention for the Stepping Strong Center for Trauma Innovation.

Maria: And hi, I’m Maria Villafranca, the Executive Director of CoDesign Collaborative. CoDesign Collaborative is a remote first nonprofit with the mission to inspire social change through the transformative power of design.

We produce educational programs for youth and adults, publications on design impact and traveling exhibitions, including ‘Bespoke Bodies’ on the Design and Craft of Prosthetics, which just came back from the National World War One Museum and Memorial in Kansas City, where we were for the better part of a year.

And that exhibition, I think, is what partly inspired this conversation, since we have been very grateful to partner with both Bionic Project and Stepping Strong in both the content development of that exhibition as well as a feature of both of your institutions in the work itself.

Janet: Terrific. Thank you, Maria. I thought it would be interesting to kind of hit on some points that you guys all put on your websites— the Bionic Project and what everybody’s doing over at Brigham and Women’s and the collaborative with the co-design— a little bit of the statistics, right? Why this is important.

And so, trauma is the number one cause of death for people ages 44 and under, ahead of cancer and heart disease. The total cost of preventable injuries in 2020 was more than 2-trillion dollars. In 2021, trauma incidents accounted for over 300-thousand deaths in the United States, leaving survivors with permanent mental and physical disabilities.

And lastly, traumatic injuries comprised 40-percent of visits to the emergency departments. So this is a well-deserved episode of Inclusive Designers, but also really just to shine a spotlight on what you are all doing.

And I also wanted to just add that we were lucky enough to go to the Bionic Race in May, and we will have all the information you’re going to hear today, and that as well on our InclusiveDesigners.com website.

So with that, Maria, maybe you could tell us a little bit about how you guys put that together. And by the way, I love the Bespoke Bodies book that you guys published. It was so beautifully done, and gorgeous photographs, and just really humanized everything. I spent a lot of time, I hope you know, like, showing it to friends, I’m like, isn’t this really cool?

But it’s been a very important discussion and one of the big takeaways I also got from the race— and Carolyn was there with me and so she can back me up— was the real cry to ask for more funding for people with traumatic injuries. And so Maria was that part and parcel of why you guys got involved? How did that all start, and how did you get this incredible group of people together?

Maria: Yeah, it was, you know, part of our, a quirk tenet of our work is really focusing on ‘how can designers and creative problem solvers include like kind of the end users or the community that they’re designing for in their design process.’

And I think the general field of prosthetic design is like the perfect example of that, right? Prosthetic designers are in many cases, like that user is actually really part of that design process. They’re really kind of helping create to make sure that it not only like, fits and best adapts to their mobility needs but that it looks the way it should look, you know, it’s kind of a perfect example of that.

And so from our end, we always want to highlight processes in which communities are part of their ultimate designs. And so that’s really where it started from. It’s been interesting because so this exhibition at first launched in 2019, and we’ve continued to update it over time and like continue to partner with you all and others who are part of that original advisory content committee.

And I have found, and I would love to hear how other people feel about this, but, that kind of the conversation around this has changed over time. As certainly as the conversation around just disability justice period has changed over time. (Janet: right).

It’s nothing has been resolved, but I think people are maybe a little more comfortable with acknowledging that we need to center like disabled perspectives when we’re talking about design in the creation of the built environment and the products we use and the structures that govern our lives, period.

Janet: Right. It’s sort of, once you see it, you can’t unsee it, right? The amount of injustice. I just went to a friends’ to go drop off some plants at their house and I had been there hundreds of times. And I didn’t really kind of realize it until I was pulling out, and there was the sign for the disability and there was a ramp there. And I had to start laughing because it was a ramp, but it was two steps up to get to the ramp.

And then inside there was a bunch of stairs. you know, it was built well before ADA, but it was, you know, there was an attempt made there, but it was a sad attempt at best. And so everything that you guys do, really tries to help to amplify that, and like you said, you know, correct some injustices.

And I think you touched on something really important, and I want to get everybody else’s thoughts into this, because I know we kind of talked a little bit about this— is making sure that the end users are with you when we’re looking at these types of built environment things. Like, I think somebody in a wheelchair, in a van, who would be parking in that spot would have been a good person to be like, ‘hey, you know, maybe, you know, there’s no room for an elevator or anything like that, but, at least just, you know, get rid of those 2 stairs to get up to the ramp.

I know, Will, that you had mentioned something the other day about the collaboration of having people. And maybe you could tell a little bit about yourself and how you started the Bionic Project.

Will: Sure, absolutely. So I’m an amputee, I’m a below the knee amputee, I was in a car accident 30 years ago, so this has been a part of my life for a long time. And it was about 10 years ago I got a new prosthetic that was kind of a hybrid design that allowed me to run, because it’s made of carbon fiber, but the way it was designed and kind of attached to my socket, the piece that, you know, actually attaches to my body. It gave me much more spring and energy return.

And I realized that I could actually run, you know, kind of as an activity onto its own. And I really kind of fell in love with running. I don’t know if it was part of my midlife crisis or what, (Janet: laughs), but there was something about it just made me feel strong and powerful. And there was something about running that was really great.

And I started going to road races which was fun, but it’s very often, it seemed like the same types of people were showing up to the races. There weren’t many other blade runners. And I had this idea of what would it be like to center a race around adaptive runners, people that are living with some kind of physical challenge. And we start the race around that, but then invite everyone in to join, so have a big inclusive race. And that’s what we started in Harvard Square.

And there were two kind of interesting things that came from that. One is that the community kind of really bought into the idea so that there were folks from the MIT Media Lab, from the Harvard Biodesign Lab, that are kind of at the cutting edge of the next generation of research, whether that’s, you know, bionic prosthetics themselves or even exo… exoskeletons— which is hard to say— but you know, kind of soft robotic structures that can help people move in ways where they might have lost movement before.

And of course, Spaulding Rehab, it has been a huge supporter of the race. They have the largest team there every year. And so it really kind of built a community, which was great. And then the other thing that we saw is that people were really starting to connect in a meaningful way. For many of the participants who are able bodied at the race, they’d never really been somewhere with a critical mass of amputees or people in wheelchairs.

And they were kind of able to, you know, talk with them after the race and before the race. And they were actually doing something together, right? It wasn’t like a conference where everyone sits and listens. We were all up and running and there was something powerful in that.

And I think it was when we started to see that starting to happen, Dana and I thought that this is an idea that we need to kind of take, it can’t just be a once a year running event, right? We need to do more with it. And so we started our education program which brings adaptive athletes into schools, and works with kids to kind of normalize disability, and to make people feel more comfortable around it.

Janet: Yeah. (Dana: uh-huh). Dana, do you want to add anything to that?

Dana: Absolutely. So, when we go into the classroom, we really have a chance to dig deeper into a lot of the topics that actually Maria was talking about. And so, we will bring athletes with physical disabilities, whether it’s wearing prosthetics or someone who navigates on crutches or in a wheelchair, and we will talk about things like universal design of stadiums. Bionic often uses sports as sort of the through line to connect with kids because we find it to be a really popular way to get kids excited.

And so when we heard about the White Stadium renovation taking place in downtown Boston, we actually got in touch with the architecture team that is involved with the City of Boston in designing that stadium.

And we said, we would like to bring athletes and people with physical disabilities to this conversation about designing a stadium that would not only be accessible to people with disabilities— meaning there are some ramps and some elevators— but how could the fan experience actually be one that is welcoming and centering for people with disabilities in a way that they really would rather be at the stadium than be at home watching the game. And so we bring this idea to students in the classroom.

And we look at Fenway, for instance, which was obviously built way before anybody was thinking about accessibility. And we point out the ways in which there have been sort of bandaid solutions put on parts of Fenway and it is now, you know, ADA compliant, but it is in no way welcoming to somebody who is in a wheelchair.

Then we look at Gillette, which was actually built after ADA guidelines. (Janet: right). And again, it has everything it needs, but when we have students look closely at the sections where wheelchair users sit, or we have them look closely at how much space there actually is between rows and between aisles and where the concessions are, students realize, ‘wait a minute, it’s not actually, for somebody for instance who is blind, or who’s hearing impaired, like would they actually rather go to this stadium?’ It’s probably not.

And so students start redesigning what a stadium could look like. And of course, the idea of universal design is when you design for the extremes. You also include everybody in that. So somebody who is bringing a child in a stroller is going to appreciate a lot of the accommodations that our students have come up with. (Janet: right).

You know, somebody who is elderly and may not be actually using an assistive device but could just use a different way to get around, could use a little bit more space between seats, could use a little more space in the bathroom. All of these considerations, kids really are open to thinking in this way, especially when we let them design all sorts of crazy contraptions. (Janet: laughs).

So this is what we do in the classroom is we get kids thinking, as Maria said, about the end user because they are going to be the ones going out in the world and designing spaces and video games and toys and kitchen utensils and all the things in the world that people design, and we want kids thinking more broadly about who the users are going to be.

Janet: Right. That’s amazing. And yeah, I hope to be able to grab a few of those images for the stadiums and everything like that and put it on our website. (Dana: yeah). So, while you were talking, Dana and Will, you know, it’s so important to have a newer generation understand the importance of just putting that, like, baking it into the cake, right?

Myself as an Inclusive Designer, people are kind of like, why do you need that type of mentality? And it’s like, well, at some point it’ll just be baked into the cake, like sustainability, like all the other stuff that we’ve done over the years in terms of the built environment. And so to get a younger generation, you know, that’s going to go through, or at least also, if not also to design it, but to demand it, or to recognize that it’s missing in action, right?

So with that, speaking of future of amputation and bionic prosthetics, (Will: yeah), and I want to get Molly into this conversation. (Molly: sure). Can you tell me a little bit about the Ewing amputee project, (Molly: sure), and some of the work that you guys are doing, and why it’s so important. Thank you.

Molly: Sure, so just, disclosure, this is a colleague’s work, so I don’t want to take credit (Janet: they’re not here, laughs), yeah not here, but so one of my surgeon colleagues, Dr. Matt Cardy, who is a plastic surgeon at the Brigham, developed a new technique for amputation, and it was originally implemented in someone who had a traumatic injury to his legs and was seeking an amputation. It’s actually quite some time following the injury as a way of managing chronic pain following a severe injury.

So, Stepping Strong funded the early research to develop this new surgical method. It’s actually, I think this is one of the most exciting things ever, because it leveraged a lot of advantages. It was considered very low risk from a research standpoint, because if you’re already amputating someone’s limb, and you use this experimental method and it fails, then the default is to just go back to the prior method anyway. So there’s no harm in it failing.

One of the challenges in amputation is the loss of ‘proprioception’. So, if you close your eyes and wave your hand around or wave your foot around, you know where it is in space. But with an amputation, that sensation or that sense is lost. (Dana: um- hmm).

So the Ewing amputation is a technique for preserving that sense of limb in space. And very oversimplifying it, but the sense of proprioception comes as a function of bending and flexing muscles. So when you bend or flex your arm or your leg, it’s a push and pull between opposing muscles. And that push pull is what allows you to know where your limb is in space.

In traditional amputation methods when muscles are kind of severed, that push pull goes away. With the Ewing amputation, they were able to retain that sense, that push and pull between opposing muscles, using what Dr. Cardi calls ‘the principle of spare parts.’

So they actually take pieces of bone and tissue from the amputated limb and use that to create a pulley within the remaining limb so that the muscles have a channel that they can pass through. It doesn’t require any type of synthetic or implant or anything. They can use parts from the amputated limb, and…

Janet: Whoa, whoa, whoa, whoa, whoa. Is everybody else hearing what I’m hearing?

Dana: Spare parts.

Maria: Yeah, principle of spare parts.

Will: Yeah.

Molly: They can use parts from the amputated limb… And that is my non-clinical understanding of what’s happening. But it’s really cool because it means that— even with a like a non-bionic prosthetic, even a very traditional, say, analog prosthetic— having that sense of ‘proprioception’ allows a person to retain much more function because they can still sense where their prosthetic foot is in space.

This project on our side of the river at Brigham and Women’s is actually done in partnership with the Media Lab at MIT, where one of their engineers, Hugh Herr, has developed the advanced bionic prostheses, and ways of connecting the prosthetic limb with the remaining tissue limb to allow communication back and forth between the two. It’s just, it is remarkable. Some of the footage I’ve seen of patients going through PT with their bionic prosthetic limb and the new sensors and the Ewing amputation in place. And it is just completely natural movement.

For me, the most mind blowing one was someone walking with a prosthetic leg and an articulated foot and ankle and stepping on a roll of tape. And just kind of naturally flicking his foot to get the tape off (Janet: wow), in a completely (Janet: natural manner). It was a response that was so intuitive and so natural (Janet: yeah), that was based on this sensory feedback that just wouldn’t be possible without both the new surgical technique and the new bionic prosthetics. (Dana: wow). (Will: yeah). So it, to me, like, I’m not involved in this project at all. I am a bystander and it’s one of the coolest things I’ve ever seen in medical science.

Janet: Wow, I mean, that alone is just amazing. Will, do you have any thoughts on the Ewing amputee project? Like what’s, as somebody who is part of that community, what are your thoughts on the new advances?

Will: I’m really excited about it. I’m excited about kind of the future of bionic prosthetics (Janet: yeah), and I think one of the things that strikes me is that it’s, it’s also like a shift in expectation. That, amputation before is a procedure that was always kind of considered like a failure, like a loss. You couldn’t preserve the limb. You know, it’s a procedure that hadn’t been changed really since the civil war.

And when they came along and, and Dr. Cardy came up with this shift and a new way to do it, it’s like all of a sudden, you’re thinking about like, ‘well, how do I set up this patient for the future?’ Like in a positive way, right?

So it’s no longer this loss. It’s like, we’re kind of reconstructing somebody. And I think that shift is really important. And I think keeping high expectations for people with disabilities, I think as a society is really important.

You know, there’s a columnist, Andrew Leland, who has a degenerative eye condition, so he’s slowly kind of going blind. And he’s been chronicling his experiences. And he’s an incredibly bright, articulate guy who’s written numerous books and numerous columns in the New York Times. (Dana: uh-huh).

And he’s talked about this transition that happens for him when he’s walking on the street, and if his eyes have gotten to a point where he wants to use the cane, you know, kind of the white cane that helps the blind kind of navigate the world. It’s still one of their best pieces of technology. The shift in how he is treated, like how people view him is so profound, right?

He goes from being arguably the smartest person in the room, people’s expectations of him when he has his cane out are that he can’t do anything, right? That he’s almost like an infant, that he, you know, like, surely he won’t understand. And really nothing with him has changed except people’s perceptions. And I think you see that a lot in society, that where people with disabilities are capable of so much more than people think.

One of our educators, Nico Calabria, was born without one of his legs. So he navigates the world on crutches. And sometimes he’ll describe an experience— and he is, by the way, a phenomenal athlete. I mean, you should see him play soccer and do bicycle kicks and – one of the most coordinated individuals I’ve ever seen.

But when he’s simply at the grocery store, you know, doing his kind of day-to-day shopping, (Janet: everyday things), you know, people will come up to him and be like, ‘Oh my God, you know, you’re so inspiring.’

And I think, you know, you try and be nice about it, but it’s like, he’s like, ‘I’m picking up a can of soup right now, like what’s so inspiring about that’ right? (Dana: yeah), (Janet: laughs). This is my day-to-day life. If you come see me play soccer, like maybe that’s inspiring, (Janet: right), but like, don’t have such kind of low expectations of me that I can’t kind of get around this supermarket and, and, you know, kind of do my basic daily shopping.

And I think, you know, we’re kind of trying to think about that when we talk with students, like in developing lessons about how as individuals we can like ask for help in a nice way, but also like how you can give help like respectfully and kind of read the cues. I think in general— this is me on my soapbox— but we need like kind of a more interdependent society, right? There’s too many kind of gaps between people and how do we bridge them becomes so important.

Janet: Right. But it goes back to also talking to the end user, right? When I put on my other hat, when I’m working as co-founder of Trauma Informed Design Society, I find we talk about how words matter. And having those discussions.

And it’s not going to be, you don’t just have to understand, biomechanics is great, understanding biomechanics in these particular situations when you’re helping to design the built environment, yes, that helps. But it’s also helpful to talk to the end user and having really frank discussions that kind of allows that flow.

And I love the fact that the Bionic Project is doing this education and then to also help these students, you know, create those, I guess it’s to create that conversation, right? That they’re not afraid of it, but they’re also, you know, not saying silly things, right? (Dana: um-hmm).

Will: And seeing, like, the potential in people, that we all have potential. We all have something important to offer, right? (Dana: um-hmm). And not kind of writing someone off just because they look different or have this type of disability or need to use a wheelchair or kind of any of these accommodations that some people use.

Dana: Yeah. And I think what you were getting at also, Janet, it’s really, we’re just trying to normalize this, right? (Janet: right). Normalize the vast spectrum of the human experience. And then as you said, normalize these conversations, normalize thinking of these features of a new building or, you know, of a new tool, (Janet: stadium, chuckles), exactly, a new stadium. So, exactly. (Janet: yeah).

Maria: I just also want to add that, you know, that’s what’s so exciting about what Bionic is doing. And like, I love the idea of the race, certainly centering disability, but meant to be for everyone. So I brought my kids to the race this past spring, 3- and 7-year-olds. And it was actually their first time going to a race. So it maybe says something about me and my lack of any athletic ability. (Janet: laughs, that’s very funny). But they loved it.

And I think it just was, for me, it felt like just important for like their understanding of athleticism to be from this perspective, right? Where they’re like, this is so much fun. There’s certainly a spirit of competition there, as there are in all races. (Janet: oh, yeah), but there’s this, just welcoming feeling of inclusivity and that this is going to be a good time. And at a young age, that’s all that matters, right? It’s just to see people with like all ranges of disabilities or non-disabilities, and just all having a good time.

Janet: Yeah, we totally did. Carolyn and I did. We were very excited to be there and thank you so much for inviting us. And we talked to a few of the participants, and they were all just very excited to be there. And it was just lovely to have that really good will kind of experience. It was really quite remarkable. And I just want to be sure I do a shout out.

So with that, maybe to talk a little bit more about the work that you guys are doing… Do you guys work directly with ‘Stepping Strong’ or is it just a synergy that naturally kind of progressed or was this a product of CoDesign (Collaborative) coming together and bringing you guys together. How did that work?

Will: Well, as an amputee, I’ve been going to the Media Lab for almost, you know, 15-years and working with Hugh Herr’s group that Molly spoke about, the ‘Biomechatronics’ group. I first, like as a teacher, I actually brought students to the Media Lab to see it as this kind of this amazing interdisciplinary place that’s like practically inventing the future. It’s a very inspiring place to go.

And Hugh and his group has really pioneered this next generation of bionic prosthetics. I’m going there this afternoon to test one of the graduate students’ new designs. So we kind of had that framework.

And then there was also this love of running and Stepping Strong has been so active in the BAA and the (Boston) Marathon. (Janet: that’s right), And so our paths naturally overlapped. And The Bespoke Bodies exhibit was also a great community event that brought people together that had, you know, different interests in this broader arena, kind of all at one place. So there’ve been a number of opportunities for us to connect.

Janet: Right. And just again for everybody listening, we’ll have all this information on our website, InclusiveDesigners.com, and where you can get either involved or donate or however you would like to participate.

So, I’m really fascinated by the whole stadium thing, the White Stadium in Boston. I think it’s a great opportunity for all of us in this arena, to really— that was a pun I’m sure, right— to really have an opportunity to have a voice in this, and I think the time has kind of come.

And maybe, you know, I know you talked a little bit about the work that you’re doing with students. Are you guys working with any end users in terms of talking to the architectural firm for The White Arena? (Dana: yeah). How is that going?

Dana: Well, bionic was just part of a conversation actually last week that was brought together by the mayor’s office because— and I just, I learned this during the call— that Mayor Wu’s entire youth sports initiative is about getting more children in Boston playing soccer.

And she has chosen soccer as, I mean, you know, it’s the world’s game. It is a game that actually is quite inclusive. (Janet: right). There are, I want to say 7 different forms of adaptive soccer that are officially played in our country and have leagues. And so this is something that she’s really focused on during her administration.

And so we were brought on the call with other groups like, New England Adaptive Sports, which is run by Joe Walsh, and Achilles International. Joe Lamar was there to represent that group. Boston Cerebral Palsy Soccer and I’m sorry, the woman’s name was Mara, I don’t know her last name.

But we were brought together as a part of this group to think about not only ‘how can we be more inclusive in soccer in Boston’ but also ‘how can we train coaches to language that is inclusive.’ And often youth soccer coaches are parents who are volunteering, and they maybe have had no teaching experience. So it certainly is no fault of their own that they are not used to teaching a variety of students.

But Nico and I are going to be involved in creating a module for coaches so that they are ready to, you know not, certainly not be experts on every type of student or disability that walks onto the field, but to be inclusive and welcoming in their language and aware that there might be different needs or different equipment that’s needed.

And so then that sort of feeds into this conversation about White Stadium and continuing to talk with the architects who are involved in talking to end users and bionic is, we actually presented at KMA architects in Watertown last year.

And we brought three of our teachers. One of whom is Nico who navigates on crutches; Jovan Booker, wears a prosthetic; and then Elizabeth Souter, who is a researcher at the Harvard Bio Design Lab, she plays for the Boston Ice Storm as a sled hockey player. She’s in a wheelchair.

And so we brought those 3 end users and presented at the architecture firm. And we actually did a version of our White Stadium lesson with them to help them start thinking about their actual work on White Stadium. So, yes, we are, we’re doing our best to bring the users to the designers.

Janet: Right. I think that that’s really important, and one of the things that I also took away with the Bionic Race and talking to everybody and the message was very clear. There was no mistaking the message, which was that all the work that Stepping Strong is doing, and the Bionic Project is doing, that all of this is not being funded, right?

It’s mostly private donor funded, and I’m sure there’s some grants out there here and there but at the end of the day, it’s just not happening in part and parcel of the insurance companies. (Dana: um-hmm). What I was told, which angered me to no end. So, Will, I’m going to get on my little soapbox. (Will: chuckles). I bring one with me for every episode. (Dana: chuckles).

And which is this, it’s kind of blazing in my mind that, you know, with kids when they had some sort of amputation that it is not paid for by insurance. (Dana: um-hmm). And I can’t imagine that, you know, all you have to do is have kids or grandkids or nieces and nephews, to know like, you know around that 4, 5, 6, 7, 8, 9, 10, 11, 12. They’ve got, I mean, they’ve got so much energy and to then not be able to have a prosthetic because you don’t have the money.

Or that if there are special programs that, you know, you have to get to some place to get these things done and there’s no funding for that as well. That really just broke my heart, and I thought to myself, this is crazy, like really crazy, you know? Molly, can you jump in on this?

Molly: Sure. so I think that the cost of treatment and the cost of prosthetics is a huge concern. (Janet: yeah). That’s actually, the research that I am more engaged with that healthcare in the U.S. is very expensive and unattainable for many people. And like even just a baseline prosthesis may not be available for many people.

And then we get into these new technologies where they’re so cool and we can do amazing things, but it’s expensive. (Janet: right). And especially if you think about a child where they’re going to grow and need (Janet: additional), new devices and adaptations and things like annually, possibly for many, many years.

And so we, we haven’t figured that out yet. Cost-wise, there are charities that might be helpful. At Stepping Strong, we do not have the resources to help somebody achieve a prosthetic. We have some funds available to help patients who are in the acute care phase. So they’re in the hospital and they may need help so that their family member who needs to travel pretty far can stay in a hotel, we can support that.

But it’s something that it’s very expensive and we think about the scale of the number of people who need a prosthetic. And it’s not just traumatic injury. It’s cancer. (Janet: right). It’s people who have limb loss or limb differences from birth. So it’s much, much broader. It’s such a large scale that we can’t rely on philanthropy to, to fix it.

And it’s one of those situations where we need to shift the way we fund health care or even view a prosthetic as health care. (Dana: um-hmm). And not as a luxury good, which I don’t think it’s ever classified anywhere as a luxury good, but financially it’s treated as such. (Janet: right).

So we need to shift the way that we fund things and pay for things so that we’re not dependent on the kindness of a stranger to pay for this. That never works out in a great way because then it, it’s never enough, and there’s bias and injustice and who benefits from it when it is up to a donor to choose who they’re going to help and when they’re going to help someone.

Janet: Right. Dana, did you want to add to that? I saw you nodding.

Dana: Oh, just to support everything Molly said. Bionic has been advocating with a group that is supporting the H.4096 bill that is in the Massachusetts House right now, which would mandate that insurance companies cover an athletic prosthetic, which is exactly what Molly is speaking to and Janet, what you were saying. For children right now, the only prosthetic that is covered is called a medically necessary prosthetic.

And what they mean by medically necessary is a prosthetic that allows a child to literally walk from one place to another. And they don’t classify running or playing or jumping as medically necessary in this case.

And so it’s actually a bill that has passed at this point in Colorado and in New Hampshire. And so it’s a bill that’s being looked at across the country. It did not pass in this recent session in Massachusetts. So it’ll be brought up again at the next session, but the Hanger Clinic is really heading up advocacy and support for that.

Janet: Right, Will, do you have anything you want to add to that?

Will: Just kind of agreeing with everything that’s been said. You know, as an amputee myself, pursuing athletics, being as active as we want to be, shouldn’t be considered a luxury or an extra, right? That’s just like a part of life.

And when you work with kids and when you teach and if you look at a child and you would say like, ‘oh, that prosthetic that enables you to walk, that’s enough for you to kind of be your fullest, best self.’ It’s just not true. (Dana: yeah). So we need to figure out a better way to kind of fund athletic prosthetic for sure.

Dana: Yeah. And it’s not when we say athletic, it makes you think of physical health, but it’s really mental health, you know, for people to be able to exercise and for children to feel included. (Janet: right!). So really with mental health being a huge topic of concern in our country and in the world frankly, (Janet: right), all of it ties together.

Janet: Yeah, I mean, again, it’s that release, right? And, getting those endorphins going and allowing people to have some sort of— and Will correct me if I’m wrong— it’s a freedom, right? It’s a freedom and what a joy that is just in itself. (Will: yeah) Yeah. So, Maria, did you want to add anything at this moment in time?

Maria: Yeah, I mean, I’m not going to get that quote right. But it’s, you know, “none of us are free unless we’re all free,” right? (Dana: um-hmm). And I think that at CoDesign Collaborative, is we really just try to tell stories and highlight the issues to encourage people to make meaningful change. I think this happens across all historically marginalized groups, but this idea that, ‘okay, I’m not somebody with a disability, I’m not somebody who uses a prosthetic,’ so that’s like something that’s pushed off to the side, right?

When it’s actually, if we’re designing for disabled perspectives, we’re creating more accessible spaces for all people, period. And, as many ways that we can tell that story, is like I think how we continue to just keep that conversation in the forefront.

Janet: Right. Yeah, it’s really important. I know we’ve kind of hit on some advocacy, right? We’ve hit on the White Stadium; asking the end user; we talked about the Bespoke Bodies. We’ve hit on a lot of points. (Molly: yeah). Molly, can you talk to us a little bit about what you guys are doing with the ‘Walk Massachusetts Pedestrian Advocacy Program’ and about how we’re trying to design inclusively with the world around us.

Molly: Sure, and I think this actually ties in closely with the things Dana was discussing with stadiums and accessibility. So this is a partnership that Stepping Strong has with Walk Massachusetts, which is an organization that advocates for walking for the sake of walking. It’s not an environmental group. We should be able to walk safely and comfortably in our neighborhoods, in our communities day-to-day.

So we’ve been working with them to develop a community-based education program that teaches people to, not to identify the hazards, because I think we all know when we feel unsafe, but to articulate the cause of what is making them feel unsafe.

So, walking around a neighborhood and viewing an intersection where it feels unsafe to cross the street or viewing a stretch of sidewalk where it feels unsafe to walk or to navigate. And articulate what is causing that? What is the problem? Is it an uneven bit of pavement? Is it a curb cut that put someone into the middle of the intersection instead of into a crosswalk? A cross signal that’s too short? A roadway that encourages motorists to drive too fast? (Janet: yeah).

So how do we identify those things and articulate them in a way that is understandable by the engineers that are responsible for fixing the roads. That is understandable to members of the city council, or other people in local government who can make those changes happen. So teaching members of the community to say this is what’s causing it to be unsafe and then how to communicate that. So which phone number to call or email address to contact?

Because most of these things, it isn’t brand new technology, it is a fix that we know how to do and we have the resources to do it, (Janet: right), but the squeaky wheel is the one getting the grease, so empower people to be the squeaky wheel in their neighborhood and ask for these very basic fixes to make sidewalks and walking paths navigable for everyone. (Janet: yeah).

Because the curb cut that is necessary to safely cross the street in a wheelchair is also necessary to safely cross the street for someone who uses crutches; or for someone who is pushing a child in a stroller; (Janet: shuffles…); or pulling their groceries behind them in a cart. (Janet: right). Like, it’s easier to shovel from a storm. It’s just easier to navigate in all those ways, and we just need to ask for it.

Janet: Right. Yeah, if nothing else that you can relate to in Massachusetts is to get off those curbs during the wintertime and everything like that, have it be a little bit less of a problem. (Molly: yeah). I wanted to make sure that we’re getting in all the conversations. But I wanted to make sure that we hit on a few different things, which is going to allow me to kind of pivot a little bit. (Will: yeah).

So when Carolyn and I were at the Bionic Race we met a gentleman, Todd Farrell from Liberating Technology, Inc. And they were doing really something kind of cool with the changing of the prosthetics from a more walkable device to an athletic device. And we thought that that was a pretty cool sense of technology. Do you guys have a thought of that? Is that going to be part and parcel of the, like a more, I don’t know if we want to say, normal prostheses as opposed to maybe the Ewing amputee project? Anybody can jump in.

Will: Well, yeah, I think what you’re describing is a cost-effective design solution going forward that, there’s two key components in a prosthetic. You know, one is the socket, which is the piece that attaches to your body. And then there is kind of the foot/ankle, and this is for below knee amputees. And then for, you know, an above the knee amputee, they also have a socket, then they’ll have a knee, and then a foot.

But there would be a way to kind of switch out the feet, if you will, for different levels of play or of athletics. You can have like a regular walking foot that has a heel on it that you can stand on comfortably and that you can walk on. And then there are also these running blades that have a much more aggressive curve that gives you more energy return. They’re much bouncier, but they’re harder to walk on.

So the idea of people being able to switch out their feet is kind of one way to make it a little bit more cost-effective rather than replacing the whole system, which includes the socket as well. This idea that you can change the blade or the foot on a device from walking to running, rather than having to have two separate legs. So that does make sense.

Janet: It does make some sense. Yeah, that’s interesting. We thought it was kind of a, yeah, you’re right. It’s just the ability to have best of both worlds and, you know, just have these other types of devices to make things go a little more smoothly for individuals.

I know we talked a lot about leg amputees and bionics, should we be also having a conversation about arms? Is some of that same technology going with arms or is it mostly about legs? I mean, I’m trying very hard to make sure that my language is correct, and that I am not saying something silly. But then arms are very important, but it feels like that this is a conversation that’s really mostly about legs. So, Maria you jumping in?

Maria: Yeah, I just, I wonder if there’s a question. because I mean, I think sometimes what happens in these conversations is, um, that, you know, it’s like, we’re focusing on like prosthetics and specifically focusing on like below the knee, just cause like, that’s largely kind of obviously the group we’re talking to right now.

But I think we’re not, certainly not like prioritizing one over any other device. or even the use of devices at all. Like some disabled folks just don’t want to use a prosthetic either because they can’t afford it, or they just don’t want to, right? like they’ve been kind of made other choices. But like, I also want to hear from you Will, Dana, about it. We are trying to promote the solutions we’re talking about, but not at the expense of like other choices that I think disabled folks might make. (Janet: right).

Will: Yeah, I think that there’s a danger sometimes in viewing technology as the savior. (Maria: yeah). That it’s going to come in and save, you know, this broken person and kind of be the answer. In my experience, it’s very often like a blend of low tech and high tech that ends up being the best. (Janet: right).

Or some people have come up with solutions for their own for upper extremities that are just reliable, and they can use every day, and it doesn’t have to charge, and, it doesn’t, you know, it doesn’t have a computer brain that might be temperamental at times.

There can be a gap, as we know, between the things that work in in labs and the things that work under certain conditions, and things that are ready kind of for 24-7, day to day use, right? (Dana: yeah). Like I want to walk every day to my best ability. So, yeah, I think it is important to recognize some of the solutions that people have come up with on their own that can also be very elegant as well, and not necessarily bionic.

Dana: Yeah. And it can be an ableist lens to think that we need to recreate the human body as is typical, right? That everybody needs two arms and two legs. That’s actually not true, right? If we’re building our world to make it as easy as possible for all sorts of bodies to navigate and get around and find help and be supported, not everybody needs to have two arms and two legs.

Janet: Right. Yeah, those are both really good points. I’m keeping an eye on the time. I would want to give everyone an opportunity to give a last-minute pitch, get on your soapbox Will, whatever you guys want to do, and be able to promote and let our listeners know a little bit more, or things that we haven’t touched on, or things you want to emphasize, or whatever it may be. And then, Maria, I’ll have you come in and bring it all home. Anybody can jump in. (Dana: yeah. Dana. (Dana: I can do it). Go ahead.

Dana: So to end on a high note and stick with the theme of stadiums, the Buffalo Bills are building a brand, new stadium, ‘Highmark Stadium.’ And they actually have partnered with the ‘United Spinal Association’ (Janet: wow). And they hired the architecture firm, ‘Populous’ which built the ‘Tottenham Hotspur’ most recent stadium.

And what they do is they actually bring in end-users with physical disabilities during the design project. And so, Highmark Stadium that opens in 2026 should be one of the most inclusive of (Janet: the gold standard), exactly The Gold Standard of surpassing the ADA for NFL stadiums.

Janet: That’s amazing. Go NFL, right? Molly, do you want to…

Molly: Yeah. So, from my perspective in this public health medical research world, we desperately need more of these collaborations with the disability advocacy realm. The public health world in many ways is, we’re out there, we’re progressive, we understand all these issues, but then it’s still a super ableist scientific domain in a lot of ways.

I was at a conference a few weeks ago, where we had a whole session talking about the fact that in public health and medicine, we still measure disability as an end point to be avoided. And not as a fact of life for a large portion of the population that should be accommodated, and we should come up with ways to live and not just avoid. (Janet: yeah).

So this conversation has been amazing, and we need more of these collaborations.

Janet: Right. Thank you, Molly. Well, you guys can always come back. We would love to have you. Will, what do you have to add to this? Last minute thoughts?

Will: Well, I think to make some of the shifts that we’re talking about in people’s perceptions I think that obviously education is one of the most important tools that we have. And so continue to think about ways that we can work with the younger generation to kind of capture them at an earlier age so that you use the expression Janet, like, so it’s baked into the cake, right?

So they just kind of grow up with this sense that, like, ‘whatever I create should be as accessible as possible to as many people as possible.’ You know, on some levels, it’s not really that complicated, but you have to kind of include that mindset from the very beginning and not have it kind of be a bandaid solution at the end. Like, ‘Oh, I actually wasn’t thinking from this perspective.’

So, you know, I think the work certainly that we’re doing in schools, I think is really important, and we’d love to see more of it happening.

Janet: Terrific. Us too! And Maria… last minute thoughts?

Maria: I mean, this has been such an exciting conversation. And I just think it’s important for certainly our community and all the listeners to this podcast, to just acknowledge that The ADA is just the bare minimum in terms of providing access for disabled people in the general population at large. We have a biannual magazine we publish, and our most recent issue was on inclusive design. (Janet: yeah).

And we featured a piece by former senator, Tom Harkin, who was instrumental in establishing the ADA. And in that piece, he talks about how that is the bare minimum for access in the built environment, right? And so even things like the ADA requires for buildings to have an accessible entrance, but where that entrance is, whether it’s open, you know, like it’s not part of the requirements. And so that can create an experience that is certainly othering, but in many cases causes like real harm, right?

And so like, I think it’s helpful to think of, you know, again, when we’re thinking about like what people can do. Like at CoDesign Collaborative, we really try to encourage people to think about what’s the small act of meaningful change, and then the larger act that I’m working towards. And just try to bring together people like this in conversation and help tell those stories to hopefully inspire people to take a small act and work towards a bigger one.

Janet: Right. So true. I mean, this has really been terrific, and I really appreciate you guys taking the time to talk. Please do come back. Maybe we can talk again once, like maybe the White Stadium is, you know, getting towards its final stages. Who knows maybe we can even take a tour. something to do like that and walk around.

And I just want to thank all of you for what you guys do. And helping everyone to be inclusive. So with that, I will say thank you very much and have a good afternoon. Thanks guys.

Dana: Thank you.

Maria: Thank you.

Will: Thank you all.

Dana: Bye.

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Janet: All of them are doing such important work… Will and Dana as former educators themselves, mentoring teachers, and coaches to be more inclusive.

Carolyn: And they are helping students realize that people with disabilities are more than their disabilities, and to start to normalize these conversations- it’s truly wonderful.

And let’s not forget the innovative work that Molly and Stepping Stone are doing. That new procedure that attaches limbs to nerves and lets them feel sensations again, that’s amazing!

Janet: Right! And I love that Dana is working with the design teams that are creating the new White Arena in Massachusetts. and how we are looking to go beyond the codes of ADA for the stadium.

Carolyn: You might say they’re using bionics to help ‘level the playing field’…

Janet: There you go, I was waiting for you to add a pun, and there it is!

Carolyn: You know I had to.

Janet: yes, of course! (chuckles).

Meanwhile, we’d like to remind everyone that the next Bionic Race will be run right here Boston in April. Carolyn— you and I went to the Bionic Race that was held in Harvard Square this past spring. We had a great time!

Carolyn: We did! And Janet, to ‘jog’ your memory (Janet: oh no), we also interviewed some of the folks there, both the participants and exhibitors about what the race means to them. If you can’t make it to the race in person, we plan to put together a separate episode that will take you there. We’re on track (Janet: chuckles), to get it out to you soon.

Janet: Stay tuned for that! For information on contacting Will Borden, Dana Ross Rogers, Molly Jarman, or Maria Villafranca… as well as links to their organizations and the amazing innovations mentioned during this panel discussion… 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 Will, Dana, Molly and Maria! And, again, 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 too. What hasn’t changed is our name – Inclusive Designers Podcast. And of course, if you like what you hear, why not go to our website and hit that Patreon Button, or the link to our GoFundMe Page.

Janet: Yes, please do. And let us know if you have any questions or suggestions for topics we should be covering in upcoming shows!

And 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!

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