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Season 1, Episode 6: More Than Just a Game: The Public Health Impact of Sport and Physical Activity for People with Disabilities

The panelists talking animatedly around a table during the podcast.

July 3, 2023

In this episode we discuss the benefits and barriers to fitness in people with disabilities, inspired by the article "More Than Just a Game: The Public Health Impact of Sport and Physical Activity for People With Disabilities."

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Episode Guests

Cheri BlauwetCheri Blauwet, MD is an Associate Professor in Physical Medicine and Rehabilitation at Harvard Medical School, the Distinguished Chair in Physical Medicine and Rehabilitation at Brigham and Women’s Hospital, and the Chief Medical Officer of Spaulding Rehabilitation Hospital. She is an attending sports medicine physician at Mass General Brigham, where she also serves as Founding Director of the Kelley Adaptive Sports Research Institute.

Dr. Blauwet is also a former Paralympic athlete in the sport of wheelchair racing, competing for the United States Team in three Paralympic Games (Sydney '00, Athens '04, Beijing '08) and bringing home a total of seven Paralympic medals. She is also a two-time winner of both the Boston and New York City Marathons.

Saul FisherAt 7:30am on June 10th, 2018, Saul Fisher was about a mile from his home halfway through his 25-mile bike workout when he was hit by a car and his life changed in an instant. Two weeks before, he had been in Berlin for a conference. His most recent position was a Global Account Manager at Dell Technologies where he did a multitude of things: business development, sales, and resource management on international Aerospace and Defense accounts. He travelled 75% of the time between the US, Canada and Europe. He and his wife, Susan, went to Europe yearly for at least two weeks. Out to dinner and driving trips all over New England. He loved to drive and work on cars. He would see his daughter, Whitney, whenever he was in DC. He states:

“On that day I became a prisoner in my body and lost my freedom. I was taken by ambulance to MGH and in the OR within an hour for six (6) hours of surgery and then six (6) days in the ICU with wonderful Nurses who were rolling me all over the hospital so I could see natural light. Fortunately my next step was onto Spaulding Charlestown, sixth floor rm 630 with a fabulous view of the Tobin. At the point I could do nothing except move my head which was in a neck brace. I was there for three (3) months and tried to take advantage of every opportunity to learn how to function with what was left. Everyone who helped me from the doctors OT’s, PT’s, nurses and CNA’s are people I will never forget for the kindness and willingness to push me and show me how to be somewhat functional. Now, while I don’t work, yet. I’m able to do numerous activities through the kindness of a multitude of professionals and volunteers. Skiing, sailing, shooting, horseback riding and riding a trike :-)”

Kathleen SalasKathleen Comfort Salas, PT, MHA is a physical therapist with extensive experience working with clients with neurologic impairments. She began blending adaptive sports with her rehabilitation approach 30 years ago, working with clients with SCI at Newport’s “Shake-A-Leg” summer program. This led to years of volunteering as a ski instructor of adaptive alpine skiing at Loon Mountain, NH. In 2009 she led the expansion of Spaulding Adaptive Sports programs from Boston to the North Shore, where she ran programs until becoming the full time Boston Coordinator of Spaulding Adaptive Sports Centers in 2021. Kathleen promotes the power of sport to enhance rehabilitation and achieve recreation goals, and empowerment for people with disabilities in all areas of their lives.

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Shonali Gaudino, OT, Host, Producer, Co-Creator

Chuck Clough, Editor

This production is a collaboration between, and partially funded by, the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Boston-Harvard Burn Injury Model System (NIDILRR Award #90DPBU0008), the Spaulding-Harvard Traumatic Brain Injury Model System (NIDILRR Award #90DPTB0027-01-01), and the Spaulding New England Regional Spinal Cord Injury Model System Center (NIDILRR Award #90SIM0017-01-00).

Transcript of Episode 6

Saul: (00:03) I was right hand dominant. And when you have the spinal cord injury, everything switches over the other side. So my left hand opened somewhat. On the rowing machine on skiing I use active hands to hold my hands on. For sailing. I do just use my left hand, left and right hand I can hold a tiller. When I go shooting with Spaulding, and also when I go down to Florida, I get to shoot real guns.

Shonali: (00:33) Welcome to Finding Strength. The Spaulding Rehabilitation Podcast, where we'll try to connect the dots between rehabilitation, research and the people who are most impacted. This production is a collaboration between the model systems and the Rehabilitation Outcomes Center at Spaulding.

Shonali: (00:53) I'm your host, Shonali Gaudino. I'm an occupational therapist, and I've been working at Spaulding for over a decade. I'm now the administrative director of the Rehabilitation Outcomes Center and I am on a mission to build bridges amongst our community of clinicians, researchers and people with lived rehab experience… people who face unique challenges every day while attempting the thing that vexes so many of us: exercise! 

Shonali: 01:19 With summer now in full swing, today’s episode is inspired by the article, ‘More than just a game: The public health impact of sport and physical activity for people with disabilities,’ written by our own Dr. Cheri Blauwet. Dr. Blauwet is the Chief Medical Officer of one of our inpatient rehab facilities in Charlestown. She is the Founding Director of Spaulding’s Kelley Adaptive Sports Research Institute, and a former wheelchair racing athlete. She brought home seven medals over the course of three Paralympic Games and is a two-time winner of both the Boston and New York City marathons… Just in case you had any doubts about her credibility on this subject. She’s joined today by Kathleen Salas, the Boston coordinator of the Spaulding Adaptive Sports Centers, as well as the voice you heard at the top of the episode – Saul Fisher. Saul describes himself as a lifelong athlete – his love for swimming started at age 7, well before a car hit him on his bicycle in 2018.

Saul: 02:17 I’ve been in global and technology forever. When I was in sales, my last job was doing NATO data centers and building those with General Dynamics. I was in London and Brussels every four to six weeks for a couple of years until my accident. In fact, today was the day five years ago that I flew to London. To go over there to a NATO conference and then my accident was June 10th, 2018 at Sunday morning at 7:30. When a 92 year old who didn't have his glasses on hit me while I was working out on my bike.

Saul: (02:55) I was in the ICU over at MGH for a week. I came to Spaulding and was in for three months when I first got here, couldn't move anything. There's a scene from Kill Bill where Uma Thurman is in the hospital and says I'm going to move my toe and that was the first thing I. With my big toe. And then from then on I did. I went through the program. Working 3 or 4 hours a day with Melissa Gregory and Lisa Perkins were my primaries. Especially Melissa got me through a whole bunch of stuff, and then I went home. In the meantime, my wife had had the house remodeled. We moved our bedroom down from the 2nd floor to the first floor. She modeled our bathroom on the Spaulding bathroom that I had, so it looks it's a mini version of that. If it wasn't for my wife, who's a nurse, I wouldn't have the help. That I have at home. After that I have have interacted with people. All along the. Are tremendous from the volunteers that I have at horseback riding to Kathleen and her team.

Cheri: (04:12) So can I ask a question? When were you introduced realm of adaptive sports? Did you learn about it while? You were here at Spaulding?

Saul: When I was here, yeah.

Cheri: So I think it's an important point to mention that we're really intentional about introducing adaptive sports concepts, just bringing it up as an opportunity and providing that education very early on. But some people, I think there's variability in terms of when people are like ready, right? Some people try something out here while they're a patient at Spaulding. And, you know, dependent on the their type of disability, they're ready to ready to go. And even when they leave here, they’re signing up for Kathleen's programs, whereas for others it takes a while. But one thing that I hear consistently from the community and was my experience too is. In a lot of circumstances, it takes people far too long to learn about the opportunities and to learn about how to get connected to programs. I think Kathleen should comment on this too, but we find a lot of value and find it really important to introduce the concepts very early after someone's disability, so that people are framing things in their heads as they go through their rehab. They're framing what's next and what are the possibilities.

Kathleen: (05:26) And what comes to mind is. Who invites the clients? Not only when, but how they frame it. So my PT worldview has been changing since being an adaptive sports for a dozen years, but I would be saying as I discharged Saul. I didn't need to tell you this, but some clients like hey PT's over this batch of therapy covered by your insurance is over. How are you going to keep active? Because gosh, you might manage your spasticity differently if you're transferring on and off a a horse and then out of a boat because. By the way, your transfers will keep getting better by doing these functional transfers. The recreation therapist would be saying goodbye from impatient and saying social opportunities. You're really going to be less isolated if you come out and you get to do these things with the nice, crisp people. The OT people are gonna save your grip strength will improve, which is kind of cool, but hopefully we're all giving similar message, different benefits. This is why you should do this. And at one point it sinks in. But that's what we know. We say the conversation pretty differently depending on what, what discipline we're working.

Saul: (06:37) And I also think that in my case I was predisposed to doing anyway because I…I mean, I think it's harder for people that never did any physical activity to get involved. And I think that there are some things where I did individual sports. I think it's easier for people to do group things. If they've never done it.

Kathleen: 07:00 That’s a big part of the conversation for and, and unfortunately I still hear that from clinicians and colleagues. Oh, I bet they're not interested.

Saul: Right.

Kathleen: You should just ask because they might like to go outside on a blue sky day and sit in a boat with support of someone else. So our biases over who would and wouldn't want to participate show up for the physicians and for the therapist all the time. And that shouldn't be the case.

Saul: 07:26 I ride with a blind lady who's been doing it for a long time.

Cheri: Therapeutic riding, not riding riding.

Saul: Equestrian. Yeah. She knew I had gone to Florida and she was walking by me. And she said nice tan.

Cheri: (07:50) No, but I think what Kathleen and Sal are describing really get at like one of the concepts that we know is so incredibly important just for just people. People's success in rehab and after a disability - after acquiring a new injury illness generally and that's self determination, right? Independence and self determination. And having a spinal cord injury shouldn't change. Inherently, who you are. And we have to then work within people's right for that self-determination, right? But ensure that if they're seeking it, and if it's what they want for themselves, that we can provide it. Or show them the way to it. And I think that's, I think largely one of the values that like derives why I would write a paper like that, which is to say like everybody has the right to move. Like these are fundamental human rights. And if we just categorically say this whole part of the population can't do that or doesn't have access to that, like that's a really flawed way of thinking.

Cheri: (08:42) When I was young, I did a blend of - I’m actually - the first sport I ever played was wheelchair basketball and because there was actually a veteran's team that practiced in the nearest city to where I grew up. It wasn't sticky for me because it was not a great experience because I was like a young girl going to this vets program, so it actually almost like deterred me, right? More than actually helping me. Because I was like, what is this? So, but thankfully I was connected with - grew up in in Iowa and I was connected with a center in Minneapolis that had - the hook for me was really going to this summer adaptive sports camp for kids with disabilities, where I got to try out a lot of different stuff. And through that camp I learned about some of their other programs and then started to get more involved in wheelchair racing and ended up competing at a high level in wheelchair racing.

Cheri: (09:33) Inclusive education, which is like a premise of our education public education system in the US, is really meant to include physical activity, physical education as well. And that's very often forgotten and not implemented. But if you are a young person with a disability or a parent like listening to this, to know that you do have the foundational right to request and strive for inclusion in the public school system in everything that's offered in that venue. And that's really important because if you think about it, what sets people on a trajectory towards having an active lifestyle and a healthy lifestyle as an adult. You know, research shows that it's what you learn and the patterns that you set for yourself, when you're young that you then carry forward into adulthood, so we can't. It's unfair and not just to assume that so many young people with disabilities across. Just wouldn't have access to or shouldn't be included in school based opportunities for sport and physical education.

Shonali: (10:35) And there's legal justification.

Cheri: There is there is, there is and to be frank, you know, there are a lot of school districts and school systems that do it very well. So it's not to say that there's not great work happening out there, but it is. When you think about parts of the country where there's potentially less resources and or less of a inherent knowledge about disability rights issues. You can see how quickly and easily it falls through the cracks, important to touch upon when we think about when we think about adaptive sport. Physical activity health. We have to think about the spectrum of life, right? And I think you know most of the most of the programs through Spaulding certainly caters to all ages. I'd say the vast majority of people served our adults, but we really need to think about that whole life journey and ensuring that our programs and our advocacy is also focused on children and adolescents

Kathleen: (11:22) I'm glad you brought up a number of points that I wanted to get back to. We certainly love having kids start early. Often the barrier is how tiny is our equipment. Loading a couple of the 12 inch with Corksport wheelchairs into my car today, that was easy. They're tiny and they're cute for an event this weekend. We do have teeny tiny mono-skis and bi-skis and sleds for sled hockey, but often just bringing a family in and being honest - this may not be a perfect fit, but you can see what's possible. The other point you maybe think of is when we're talking definitions adaptive sport versus recreation. When we're talking about school children and districts and colleges, certainly we're trying to promote inclusion in swim teams and track teams because then it's just swim team and track team. These kids should be included whether they wear prostheses, are visually impaired, whatever. Then you do have a different, substantially separate thing like you do in education. So most of the time sled, hockey and wheelchair basketball, that is kids that are primarily wheelchair users. So each school is not going to be able to build this substantially separate sport, but maybe something regional is the goal. So I I think of those as one very natural delineation between an adaptive sport and an inclusive sport, and there's certainly different definitions of both of those categories.

Shonali: (12:46) You heard Saul mention horseback riding, but that’s just one of his many sports. He’s an excellent example of what’s possible when people with disabilities engage in physical activity. Saul, as he mentioned, had a spinal cord injury at the level of C4 and C7 – way up in his neck, so parts of his body from the neck downward were affected. It was an incomplete injury, so parts of his spinal cord were preserved, but before he started an intensive rowing regimen, over at our program at Spaulding Cambridge called Exercise for Persons with Disabilities (or EXPD), he didn’t have sufficient trunk control to maintain his sitting balance, so for example, had to wear a seatbelt to ensure he didn’t fall out of his chair. In this next section, we’ll hear a bit about the relevant physiology here. In the article, Dr. Blauwet writes, “Data continuously demonstrate that people with self-reported disability are less likely to engage in leisure time physical activity and more likely to experience chronic disease attributable to sedentary lifestyles.” She lays out some of the known barriers as difficulty in identifying inclusive fitness programs, transportation, cost, inaccessibility of fitness centers as well as means for accessing the natural environment, and social stigma and bias.

Saul (14:05I've done all kinds of sports. I've done sailing, shooting, kayaking, biking, skiing, rowing. But the rowing I do over at Spaulding, Cambridge, the XPD Program, I started out doing 500 meters twice a week and now I'm up to at least 6000 meters a session twice a week.

Kathleen: I think you forgot hand cycling.

Saul: Hand cycling, as they do that. Because of the rowing. I've got to the point where my first chair was a foldable, but it has seat belt and everything and because of the rowing my core strength is to the point where I don't need a belt or anything. My center of gravity and everything is much better so I can. Sit up on the horse with very little assistance. And I can sit in the seat and the sailing unless it's blowing really hard with no belts or anything. So everything I do, the skiing is Kathleen can attest to.

Kathleen: (15:03) Quite a bit better after a year of rowing.

Saul: Of yeah, after. Yeah, after the two year two or three years of rowing. And that's been my main function.

Cheri: (14:31) When we think about some of the types of disabilities and populations that we work with in a rehab context, there's certainly research that shows that acquiring a disability in some cases it changes your physiology to some extent, right? And those changes in physiology can put one at higher risk of things like cardiovascular disease or obesity or neuroendocrine conditions, diabetes and so on that are beyond the individuals control, right? So spinal cord injury is one of those conditions. As Saul can speak to, and I can also speak to as a person with SDI, having the SDI, especially a more complete SCI, so we would use the term like Asia A or Asia B where you have more motor involvement. Definitely impacts physiology from the standpoint of what happens at the level of the muscle, how that impacts circulation, how then that can impact our systemic inflammation and how that that can then impact things like atherosclerosis. It's all very complex, as you can imagine and, thankfully, we understand it better now than we did many years ago, but the bottom line is that we were designed to move and we were designed from an evolutionary standpoint, to have these large muscle groups of the lower limbs and to some extent the upper limbs moving and pumping. And at the cellular level, that movement and that lean muscle mass actually assists our physiology in preventing some of the things that we know then lead to things like heart attacks and diabetes and so on and so forth.

Cheri: (16:52) So there's that aspect of physiology that's one kind of pillar. The other pillar that's really important to consider is how acquiring a disability impacts your participation in society and some of the things that we would think of as like the social determinants of health. So things like access to physical activity, access to a gym, Transportation challenges that can make it that much harder to be active. Aaccess to healthy food, financial challenges that can come after a disability that make it harder to even think about exercise or healthy. So there's the physiology component, and then there's also more of the environmental component. And then when you combine those things, that can really lead to, you know, significant challenges, health challenges for people with disabilities. So in the article I talk about that we know foundationally that we have problem because of these areas. And population health data demonstrates to us that we have a problem. And of course, if you’re really an epidemiologist or an expert in public health, you can argue about the data all day long in terms of its quality and how we're asking the questions. But the trends are undeniable, right? That if you look at people who across the US who self report disability and then you correlate health outcomes, there's a clear trend that if you self report. Having a disability, whether it's mobility or sensory or intellect, dual or mental health related, that you at the population level are more likely to experience chronic disease. But I think it's a very - I think it's it's not a linear problem, right? I think the problem stems from a combination of physiology and environment.

Saul: (18:29) All I would say, I mean, I know that for the first year and a half it took a lot to get me back to even 2 years - I was taking Midodrine and my blood pressure was going up and down and I was fainting a lot and it took me. It took us a while to get used to my suprapubic catheter. I mean, we would go to. I went to the emergency room five or six times because my catheter, we didn't think was working and things like that, but now I've got back to the point where I'm stable. It's just recently, probably in the last six months that I sleep through the night and then, you know, there's a whole set of other things, like environmental things that don't get addressed. I can't get a job because I can't drive myself.

Saul: (18:56) One of the biggest things and you hit on an earlier was transportation. I mean, it's really huge. I mean, I did PT One for the first six months, and it was horrible. I ended up buying my own van and I have somebody drive me now, because it's very intermittent and you're at the mercy of companies that don't have the standards are very variable- to be charitable. You never know who you're going to get, and they're never on time. And I mean, that's one of the bigger things. And fortunately, I'm was able to afford to do that. I know that veterans get their own help, as they should. But if you're not a veteran and you can't afford your own transportation….

Cheri: (20:16) Good luck. Good luck.

Kathleen: And then even in that system where they're I'm thinking of examples of former clients who are veterans on the North Shore, like certainly there's wonderful adaptive sports opportunities available at Brockton, so they'll cover it if you want to be on a 2-hour van ride to go so access points - you know we know that's come up on a different article. You know, like all of us geography matters. I'm not going to join a gym that's an hour away.

Kathleen 20:45 So that access, transports, times their open geography cost, yeah. You know, those barriers are huge that. We are trying to help modify or talk about at least.

Cheri: That’s right, yeah.

Kathleen: (21:02) Did you feel from your your medical community outside of physiatry was there an awareness that, gosh, you've got this injury, your physiology has changed. Let's check your blood sugars and your.…

Saul: No, I mean my primary kind of does whatever - my physiatrist here is Doctor Lowry - and he kind of does whatever Lowry says to do.Yeah. Recommends.

Kathleen: (21:32) It’s not a bad model.

Saul: Yeah, no, and it works well because he was my primary for 30 years, so he knows me, but even even stupid things like catheter changes I get done at the hospital because, no urologist will want to lift you.

Cheri: Yeah, they won't. They won't have the the equipment needed in many cases.

Saul: Well, it's just a table. They won't lift you up on a table to be flat so.

Cheri: We got challenges.

Saul: No, I mean, I could go. You could go…

Cheri: You go on forever. It's a challenge. Yet again, Shonali another podcast.

Shonali: (22:10) Lot of podcast topics ahead, Dr. Blauwet. If you’re interested in this topic, I would highly encourage you to go to the episode resources and get the link directly to the article. It’s short, easy to digest, and really helps to understand both the physiology related to some specific conditions like spinal cord injury, stroke, and traumatic brain injury, but also gives context to the current state of US policy. Disability, much like end of life, is something that the majority of us avoid thinking about until we can’t. Dr. Blauwet quotes the Institute of Medicine in saying “Disability affects today, or will affect tomorrow, the lives of most Americans”. Dr. Blauwet also makes the case that “health disparities that may disproportionately impact the disabled community should not be seen as niche problem impacting only a small subset of society, but rather, a public health crisis.” The concept of universal design, in my mind, has been most often equated with building architecture. But in this article, Dr. Blauwet applies it to sport.

Shonali: (23:16) I want to talk a little bit about language. Universal design is a term that has become more familiar to the general population. The idea that our baseline strategy for the built environment can enable access for all users. Dr. Blauwet, you quote the same center that I was looking at - Center for Excellence and Universal Design - in terms of defining universal design, but I also really liked when we go further down that definition. They say that universal design is not a special requirement for the benefit of only a minority of the population. It is a fundamental condition of good design. So the argument in in some of this articles that we begin to see sport and physical activity through that lens of universal design, part of I think what I'm thinking about is we really rely on language and terminology and definitions to sort of box ourselves into understanding concepts. So when I think about this, I think about - we have the Kelly Adaptive Sports Center and you talked in the article about mainstream sport versus disability specific sport like sport adaptations and accessible sport. So is adaptive sport, are there definitions that we should know about?

Cheri: (24:24: That's a great question. So yeah, the prevailing terminology in the United States is adaptive sport or adaptive sports, referring to important physical activity that is specifically taking concepts from mainstream sport and then adapting it so that it can reach more people and particularly people with disabilities. There are differing trends and opinions globally. So for example, a lot of people, particularly in Europe, use the term Parasport. That's probably because in Europe that the headquarters of the International Paralympic Committee is in Europe, and there's a lot of activity around Paralympic sport, which also exists here in the US. But I think in the US VC adaptive sport as being broader right, whereas Para, for in its more traditional sense, is really meant to apply to sort of that pipeline towards Paralympic sport, which is the elite level, and sports that are competed at the Paralympic Games, which is really only a small subset of adaptive sports. And then, of course, a lot of people would differentiate recreation. So we're thinking adaptive sport and recreation. And what's the threshold between sport and recreation? I think is I'm sure there's a lot of literature around that, and people who think about that all day long. But how I think about it is and I'm not the global expert on this, but how I think about it is that sport is typically opportunities that are based on a certain set of rules, right? And can be competed. Whether it's at a very entry level, community level or at an elite level. Whereas recreation is more typically based in terms of outdoor activity, getting out in nature, you'd kind of go hike on any trail you want and it's recreation and physical activity, but unless you're competing against other people, maybe it's not sport. So that's how I conceptualize it, but I'm sure many would beg to differ with that because there are scholars who think about this type of thing from a public health standpoint.

Saul: (26:31) I would beg to differ. Well, for instance on the- on the hydro, for instance. I look at numbers and what I'm going to do that day and whether I'm going to do. So I do 20- to 45-minute sessions or two 20s and I look at. Doing negative splitting ad things like that. And everything I do is in terms of numbers Like when I go skiing, it's can I get from green to blue to black? I haven't got to black yet, but I want to get to black or when I go sailing tacking can we get the spinnaker up? Can we go faster? It's all about numbers. And if you don't know what the number are, you don't know if you've improved or not. I'm at the point now where - and Glenn won't like that - but my belt is on very loose because I don't need it. That's what sport is about. Sport is about improvement. And getting better. And if you don't know what you've done as a baseline, you can't get better.

Shonali: Even if you're not competing with others

Saul: (27:42) Yeah, I'm kind of well, we kind of we kind of compete anyway because we have numbers - we do - at EXPD, we have 500,000 meter competitions.

Cheri: So I think that's I think that's a form of competing I'm with you.

Kathleen: (27:55) And they do a phenomenal job. And which is why that is such a great home for you. Because that calls to you. I often think about the sport versus recreation conversation because we're called Spaulding Adaptive Sports Center. And it does scare some people off and think we are constantly -like that 80% of my program is paralympians. And that’s really not true. Not even close. So for example, our kayaking program, it is very recreational. We're outside, we're social. You can try to say I'm going to go this distance and last week it took you 30 minutes. That's not why they're in it. So yeah, there's an example of a sport. That could go either way, depending on how you view it. And we flex that all the time according to the. Individuals. So even though we're called Sports Center, I would argue 2/3 are more recreational participants. That's what calls to them. At the expense of feeling like we don't provide enough competitive opportunities, we don't have as many group sports or team sports.

Shonali: (28:59) Dr. Blauwet ends the article with a Call to Action to apply universal design to sport and physical activity, with some specific examples in the areas of places, tools and materials, and programming. I wanted to clarify that the American with Disabilities Act, the ADA, doesn’t require retrofitting for accessibility, and what that means about the accessibility of our fitness facilities in Boston, one of the oldest cities in America.

Cheri: (29:26) The premise of the ADA is that if you get a new permit or you enhance infrastructure, then it has to be accessible. It has to be under ADA specifications. But if you built a gym, you don't have to go back and retrofit it until you need that new permit to do the updates.

Shonali: Which, especially in an area like Boston, which is the first. Everything, all of these buildings are really old and don't have accessible…

Kathleen: (29:54) I feel like this topic comes up in waves, as a number of local organizations, fitness organizations would call and ask for support. So I can think of a couple of clients of mine who go in and are part of a focus group. And say, gosh, you need to get some cranks that I can use while I stand my wheelchair. Or we would do educational outreach. How to use your new pool lift. But I truly do remember a story where I was invited to look in the new pool lift and do this 90 minute in service and I brought a client of mine who's a wheelchair user and she literally couldn’t get in the building. So the bathroom looked good and the pool looked good, but she couldn't get from the street - in the Blizzard - on the sidewalk - into the pool area. And she went home and I gave her really good in-service. But it was really something. And this was a beautiful old Boston region fitness facility. Happening in fits and starts that - or summer camps are looking to be inclusive and how can we do that? We've got this new cool piece of gear - so like great so. You get the person in the water…how? What are you gonna do? Is your staff trained to work with this person? So there are not enough organizations that are bridging that gap.

Saul: (31:13) I would love to swim again, but it’s…to get there, and then even the most basic thing, having a wet bathing suit and sitting on my chair again.

Kathleen: You gotta bring a person to help you to get out.

Shonali: (31:27) It's going to make your chair all wet.

Saul: Yeah, it's going to make my chair all wet.

Kathleen: Yep, we put, you know, four towels on the on the cushion and then, but then you've you've got an hour to get dressed because you're in a limited locker room and this is an accessible locker room. So….

Saul: Yeah, I mean, I think I would just go home wet and change at home.

Shonali: Yeah, let the chair dry

Kathleen: So people do. Unfortunately it's, you know. So it takes twice as long - three times as long as for you and I to get in.

Shonali: (31:52) But that also was actually why I was thinking about like a list of accommodations is not - or a list of sports in ways of adapting sports is not ever going to be the full answer, because there's always going to be so much heterogeneity. In terms of what everybody's individual needs are that you're going to have to do some problem solving. So at the beginning having sort of that therapist intervention to be able to problem solve.

Shonali: 32:16 Even if we can’t make a perfect list, and a list would never be the full answer anyway, I do love a good checklist. Dr. Blauwet’s article notes that there are ADA checklists that help to evaluate fitness facilities – you’ll see that link on our episode page. But when I hear them talk about things like active hands, eAssist bikes and Krank Cycles, I can’t help but want a robust list of adaptive sports equipment. 

Shonali: (32:41) You know, we could probably talk for hours and hours about all of the different types of equipment. I will say in the article, Doctor Blewett, you reference crank cycles as an example of something that people can, or that fitness facilities can, to very quickly and easily make classes like spin classes more inclusive. These are upper extremity bikes. It made me think about I have just been talking to someone about workplace accommodations and how there are websites devoted to like, here's a full list of all the different types of accommodations. I don't think that they're great. But they're starting to build those out. Are there like public resources that have like a nice full list of like all of the different types of ways you can adapt any possible sport that's out there. All of the different types.

Cheri: Is there one stop shop, Kathleen?

Kathleen: There’s not. There are national organizations. Many are sports specific, and so the kayaking reference I just gave is through the American Canoe Association that does adaptive paddling certification classes for four days. So there are many sports specifics. Many of our sports don't have a national body that includes adaptive best practices. It's still to come that there would be one place to get resources

Cheri: (33:59) So I'd say there's the two things that come to mind that are probably the most comprehensive. Not as we've said, not fully comprehensive, but provide a lot of valuable information. The first is either publicly available information or a call to an organization called Move United, which is based in Washington, DC, but it's a national member organization. So there's Move United chapters all over the country. Centrally at the sort of headquarters they do, you know they have a very engaged staff and they do a lot of work to promote different aspects of adaptive sports, from entry level up through highly competitive. And if you're looking to pursue opportunities no matter where you are in the country, it's a good place to look for. Hey, where do I go? Who should I talk to? Who can I call in my state or region or locale and then the other is the National Center on Health, Physical Activity and Disability or NICPAD which is based at the University of Alabama Birmingham and also the Lakeshore Foundation in Birmingham. That's a CDC funded center that does a lot of as you can imagine public health focused work around promoting physical activity for people with disabilities. A lot of online training resources manuals, they have a Resource Center. So if you have a specific question about a specific niche sport, they have people who will pick up the phone and help you find the information you need, so that's also very rich source of information.

Kathleen: 35:25 And I send people there often because they've got pre recorded workouts for, you know, wheelchair classes - this one’s balance, this one's chair yoga. So for people that aren't able to be part of some of the virtual classes that we're doing, I'm so happy to send people there to realize there's lots of different options for you. And here's a good place to start.

Cheri: 35:44 Also through that collaboration, we are a site for a program called Mentor which is also funded by the CDC, which is a program that is designed to engage people with new onset disability in virtual fitness training, education around nutrition, mindfulness, healthy lifestyle, trying to bridge that gap from formal rehab. Then moving into healthy lifestyle after you're done with the formal rehab process and that's really a fantastic program that is really still launching and development, but we are a site for that program.

Shonali: (36:25) Well that’s it for this episode. Remember that you can go to the episode’s resource page for links to the programs we mentioned. Hopefully you’ve been inspired to go get a workout in a way that suits your body. Swimming and yoga for me. And check back in August for part two of this special series on the Kelly Adaptive Sports Research Institute. Dr. Blauwet will be back and talking about rehabilitation in elite adaptive sport, and how we’re starting to get more attention on the global stage.

If you've enjoyed this podcast, please know that liking, subscribing and sharing is essential to sustaining our work. We release episodes the first Monday of each month, so stay tuned for more stories. The Finding Strength production is a collaboration between the Rehabilitation Outcomes Center at Spaulding and our Model Systems: the Spaulding-Harvard Traumatic Brain Injury Model System, the Boston-Harvard Burn Injury Model System, and the Spaulding New England Regional Spinal Cord Injury Model System Center, all funded by the National Institute on Disability Independent Living and Rehabilitation Research. The material presented here is for general informational purposes only.

Saul: (37:40) You can hold on there too. That's a carbon fiber because I've only had two UTIs in five years.

Shonali: That’s pretty good.

Saul: And I only get my catheter change every three months.

Shonali: Because you’re drinking enough?

Saul: Yes, yeah. So on a non-rowing day I do two or three - on rowing day I do four or five plus a couple of beers.