Ableism and Accessibility in Healthcare with Sarah Skeels

Last year, Dr. Zachary Gabor sent me a paper from Nicole Piemonte titled, “More to the story: how the medical humanities can learn from and enrich health communication studies.” In it she writes that the field of Medical Humanities “gathers insights of many disciplines- literature, philosophy, religion, history, art, bioethics, and the social sciences–in order to foster a richer understanding of the human experience of illness, health, disability, identity, gender, embodiment, healthcare, and the like.”

Patient care goes beyond technical skill and clinic knowledge; experience and outcomes are heavily influenced by interpersonal communication. We see a similar trend in fitness; and I would imagine across industries. “Human experience” is the key part of that definition. I’ve been fortunate to better understand the lived experience of those with disabilities over the last six months of hosting the Podcast; from language, to etiquette, to expectations. In this episode, with her background as both a professor and patient, Sarah is able to provide insight into where education fails to prepare medical professionals for interactions and understandings of disability.

In a 2021 study, Lisa Lezzonni surveyed 714 board-certified U.S. physicians across seven specialties to assess biases and stigmas towards disability. They found that only half of physicians “strongly” agreed that they would welcome people with disabilities into their practices. More than 80% of physicians assume that people with significant disabilities have worse quality of life. Only 2/5ths of physicians reported feeling “very confident” in their ability to provide the same quality of care to individuals with disabilities as to those without. And these beliefs are held by the most highly educated individuals.

Unfortunately, not enough professionals are able to learn from professors like Sarah. I hope our conversations on this podcast and the lessons from our incredible guests eventually reach a wide enough audience to fill a portion of that void.

Listen to Episode 29 with Sarah Skeels here or watch the video below

Brendan Aylward (01:52)

Welcome to the AdaptX podcast where we have conversations with individuals who are building accessible businesses, advocating for inclusion or excelling in adaptive sports. Our intention is never to speak on behalf of those with disabilities, but provide them with a platform to share their ideas and insights to help us make the world more accessible.

Today we are joined by Sarah Skeels. Sarah has a BS in exercise physiology from the University of Virginia, where she focused on adaptive exercise and a master's degree in public health from George Washington University. Sarah is a researcher, OT faculty at Tufts University, and senior teaching associate in the School of Public Health at Brown University. Sarah is heavily involved as both an athlete, coach and board member in various adaptive sports organizations. Sarah, thank you for joining us today.

Sarah Everhart Skeels (02:43)

Oh, thanks Brendan. It's awesome to be here.

Brendan Aylward (02:45)

We first met about three years ago when one of my favorite interns of all time, shout out Dennis Peery, had you as an advisor for his doctoral capstone project at Tufts. His project revolved around making recreation, lawn games specifically, more accessible for people with cerebral palsy. I really enjoyed every meeting as it gave me the opportunity to learn from you and I'm glad we've stayed in touch over the years.

Sarah Everhart Skeels (03:11)

Yeah, me too. I'm really happy. You've been the driving force in this, staying connected, and I appreciate it.

Brendan Aylward (03:18)

Yeah, that's a very kind way of saying I continue to pester you over the years. You were a Division I swimmer at UVA studying exercise phys. I read that you had a focus on adaptive populations. What encouraged you to do so? Because this was before your SCI.

Sarah Everhart Skeels (03:28)

Yes.

Yes, I did.

Yes, it was way before all of that. I was young and I was introduced to disability pretty early on in my life with, when I was in a Girl Scout group a long, long time ago and we had a person in our troop who lived with a disability. At the time, when you're a little kid, you seem to think they don't know anything different of anybody and a lot of people treated her differently. And I never understood that and I always hung out with her because she was a really nice person and I helped her out. She needed some help doing some things and I just sort of became more aware of the differences that happen sometimes when someone with a disability shows up in a space that.

especially back then in the 70s, disability was really institutionalized at the time. Parents were told to put their kids in institutions. It wasn't like it is now, thankfully. So, I think I carried that with me into school and when I could take adaptive, I started taking more adaptive fitness.

This, you know, just adaptive, everything I could that was adaptive, that was labeled adaptive at the time. And, uh, and it just was something that was really interesting to me because it's, it's not just the basics, Brendan, it's applying. This is what I love about working with disability. It is, unique. It is not standard. And so, you have to know your stuff because then you have to apply it to a non-standardized person and figure out how they're going to work.

Sarah Everhart Skeels (05:22)

right, and how this is going to work for them. And I find that it's like a puzzle. It's like organic chemistry, you know? This puzzle you put together that can turn out to, that ends up in this empowered person in the end, if you're talking about adaptive sport and recreation.

Brendan Aylward (05:40)

Yeah, we talk about how it's always really important to have a strong foundation and exercise physical strength and conditioning as a whole, though, so I guess it gives you all those different puzzle pieces to assemble. I think some people get into that space because they're interested in disability or they wanna be an advocate for disability, but you also have to do your due diligence of really knowing your stuff from an exercise science standpoint, because that's what allows you to kind of creatively apply it to these unique situations. But I think working with adaptive populations

Sarah Everhart Skeels (06:01)

Yeah.

Brendan Aylward (06:10)

better coaches for all populations, is that something we try to expose with our course?

Sarah Everhart Skeels (06:14)

Yeah, it really, you have to have really strong observation skills and really understand how body systems work and, I mean, the body's fascinating. And anyway, you know, I was exposed to disability again as an undergraduate student when I decided to work as a physical therapy assistant at

the UVA Medical Center at the time. It's now blown up into this huge thing. At the time, it wasn't as big as it is. But I was then exposed to other people who are challenged in all these spaces. And I was just like, why, you know, why, why does it have to be so hard for you and it's not as hard for me? Not, I'm not talking about movement. I'm talking about access to the ability to move, you know? Which is what you.

Brendan Aylward (07:01)

Yeah, absolutely. Yeah. What were your... Exactly. At the time, did you have specific career goals, like a specific environment that you wanted to be in or industry that you want to be in?

Sarah Everhart Skeels (07:13)

I really wanted to go into rehab. I wanted to be a physical therapist and I wanted to go into rehab. Physical rehab is you know a challenge and I didn't get to do it as a clinician, I got to do it as a patient so it's all kind of weird in my case.

You know, my experience now isn't any, is probably more profound than it would have been if I had just become a physical therapist and moved on in my life. Been one, just of one of many people. Instead, I have this really weird experience of life. And I'm in it to win it, so whatever.

Brendan Aylward (07:53)

That's a theme that I have heard from some of the other guests that we've had with SCIs, almost talking about how their life is better after their industry, sorry, after their injury. And so you've kind of found that to be the same, right? It's given you more purpose and kind of a unique path.

Sarah Everhart Skeels (08:06)

Yeah.

Sarah Everhart Skeels (08:13)

Yeah, and I wouldn't say, you know, I don't know. You don't know what life is going to be on; you only know your experience. So I can guess what could have happened. And I don't know the paths I would have taken. I can only guess about that. I know what I've done in my life. And I think what my injury brought me is this idea that, you know, there's one life we have here. There's one. This is not a dress rehearsal. This is for real. And,

wanting to live it as much as possible became what I wanted to do. And I don't know if I would have had that same verve and motivation had I not had a traumatic experience that took away what I thought was me, you know. And then I had to learn that there's a lot more to me than just my physical self.

And, you know, and then we want to tie it back into physical activity and recreation and fitness. You can't be your best self if you can't be there. And I think, you know, like everybody is an athlete at this point. When you are a wheelchair user in this world, especially in the snow, et cetera, you are an everyday athlete. Whether you want to be or not to navigate the world as a wheelchair user, you have to figure things out.

all the time.

Brendan Aylward (09:35)

Yeah, absolutely. And we can talk a little bit about, barriers to accessibility, specifically a little later on. You were initially accepted into PT school and then that offer was rescinded because of your injury, right? What was, what was that experience like? And have you encountered a lot of ableism kind of in the industry?

Sarah Everhart Skeels (09:38)

Yeah.

Sarah Everhart Skeels (09:47)

Yes, it was.

Sarah Everhart Skeels (09:57)

Yeah, so the industry, our world is ableist. So, we have to start with that and that understanding. And it's something that's slowly changing, but we just live in this world right now where physicality is highly valued.

those of us who are physical but present ourselves differently, i.e. maybe as in a wheelchair, maybe somebody using crutches and a prosthetic limb, any of those spaces, we all of a sudden can't. The word can't is attached to us so quickly, just at glance from somebody. But I think

The whole, my whole initial career trajectory or my hopeful path ended in a way that was very upsetting to me, you know, to deny me, to say to me, and this was back in 1990 before the ADA was really a law. So I, and I was so caught up in rehabilitating myself that I really, I bought into it. No, I can't be a physical therapist because all I was thinking about was all the things that I had done.

or that I had seen being done in rehab and was like, how am I going to do these things? And, you know, now looking back, 30 some odd years later, I could have figured it out. I would have been a very good clinician, but that wasn't my path. I had to be open to the fact that maybe, you know, up until that point, the world had worked for me. You know, I have the right color skin. I was

talented in a sport. I was able to just access things all the time. I had a lot of privilege, and I didn't understand all that privilege. And my spinal cord injury certainly exposed me to what privilege means and what it doesn't mean. And I think it was my first time to come up against that. And we weren't using language like that back in the 90s. But I think that learning how to

Sarah Everhart Skeels (12:07)

fit into a society that, didn't want me, and didn't value me, and especially healthcare, which is about as most ableist place you can be, unfortunately, is in healthcare. I would say that it's just that because I think rehab is like you have, and medicine, it's all about trying to be as normal as you can, as far as whatever this normalized standard person is that you're, this profile.

And I knew I was never going to get to that. so what I eventually did was realize I can live outside the lines. Nobody has any, unfortunately nobody has any expectations for me. I have high expectations for me. I had to realize it all had to come from me because I could just have given up. I could have just stopped. I could have said, you're right, I can't because, I can't.

This happens all day, every day for lots of people. I can't because dot dot dot. And that because dot is the thing. what does that really mean? I had to look into that. I'm not suggesting that that's an excuse. I'm just saying it was something I had to look more deeply into what does that mean? And at the time I was in my 20s. I wasn't ready to give up. I was ready to start and fight and push. And so I think it was actually in the end.

It really pulled out my strong inner athlete and helped me, my inner athlete really helped me move through a lot of frustration and disappointment and into a better space.

Brendan Aylward (13:45)

That reminds me of a paper from Alan Jette, who I know you're familiar with, called the paradox of physical therapy, where he talks about how the physical therapy industry is claiming to value diversity while also establishing these pre-established norms that everyone is supposed to move towards. And so that kind of opens up the debate, debate's probably too strong of a word, but between the medical model versus the social model of disability.

Sarah Everhart Skeels (13:49)

Yeah.

Sarah Everhart Skeels (14:06)

Yes, yes.

Brendan Aylward (14:09)

And while I do think it's essential to adopt the social model, that's the first module that we introduce in the course that we teach to fitness professionals. But I guess where do you think both kind of fall or what value do both the social model and the medical model have in a highly medical field like physical therapy?

Sarah Everhart Skeels (14:30)

Yeah, you know, I just gave a lecture to the Brown, the, let's see, the Warren Alpert, the Brown Medical School third year class. And it was about the medical and the social model. And what does it even mean? They don't learn, you know, I think it's, I don't know the exact, so I wanna.

Make sure the audience understands I don't have the exact number here, but less than 30%, I think, of medical schools actually have a curriculum for disability. And my guess is that's very similar in physical therapy as well. I didn't go to PT school, I didn't go to medical school, but I've been involved in working on the curriculum at the Brown Medical School to try to at least introduce disability a little bit more to them. And this was what I was talking about was.

the medical model and the social model and what does it mean in medicine? And in my opinion, you know, someone with a disability has developed their status quo, whatever that status quo is in their life. So they initially, you know, if you acquire a disability like I did,

You know, you have the health management issues. You have to learn how to get through. And you create your, okay, this is how I manage my bladder. And I know when I have a UTI or I know when I don't. So I know when to seek medical care because I am out of whack. Where am I out of whack? And so when my symptoms flare up and I want to get back to my status quo of

my general health, that's when medical model helps, because we can figure out, you know, what are the symptoms? You know, I go to an expert, a healthcare provider, who I will demand works with me, not to me, not at me, but with me to figure out.

Sarah Everhart Skeels (16:23)

What is feasible for me? What is reasonable for me? What can I do? And then I go back to my social model, which is I'm chugging along. This is who I am. I'm moving along in my day. My disability is very, I don't wanna say the word controlled is a dangerous word in my opinion, but things are relatively manageable and I'm doing fine. And in that case, I don't.

I may not go to a physician or an OT or a PT to make anything better. I might be going there or to cure me, to cure something, because that's not going to happen. But I might need to get back to where I was, or get a little bit stronger. But those are my goals.

not somebody else's goals for me. Those are my things that I wanna do. So I see the social and medical model, all it can work together. And I don't think we need to attack the medical model, but I think we need to be aware of when is it useful and when is it a barrier. And unfortunately, that has to be driven by the person, by the...

when we enter healthcare, we'll call patients, which I've never understood because it does require significant patience, the different spelling to be a patient. But when we're out in the regular world, I'm not a patient, I'm a human being. And I don't like being called a patient when I'm not in medical care. So it's when the medical model comes out into the real world and starts walking around and putting a lot of

Brendan Aylward (17:49)

Mm-hmm.

Sarah Everhart Skeels (18:12)

unnecessary and I'm going to use the word barriers again, or challenges, in front of somebody for really no good reason, in my opinion, for no good reason other than, well, you're different and you're different in a way that isn't valued and so you therefore are inherently never going to get to what we want you to get to. We being the medical world saying, well, physiologically this is perfection or standard and you're never going to get there.

because you have a spinal cord injury. And I said, and I say to that, well then what's my standard as my person? That's more my responsibility to figure out what my standard is and then when I'm outside of my standard, that's when I can go seek assistance and if it has to be medical. I don't know, does that make any sense?

Brendan Aylward (18:59)

Yeah, no, absolutely. And towards that last point, the benchmark or the standard, I'm interested in that, not from the lens of GMFCS cerebral palsy, where I have to label you at a certain level, but more so as a means of evaluating the efficacy of my training. So if we have a client with an SCI...

Sarah Everhart Skeels (19:20)

Right.

Brendan Aylward (19:24)

what do I need to measure? Where is progress shown? What can I expect? Is the goal completely client driven? Like, does it just depend on what you want to accomplish? Are there things that you don't know that a medical professional should maybe know that they should educate you on, or are you always doing the educating? So I know you helped develop the sci-fi. Can you maybe?

Sarah Everhart Skeels (19:32)

Yep.

Sarah Everhart Skeels (19:36)

Right.

Sarah Everhart Skeels (19:40)

Mm-hmm.

Yes.

Sarah Everhart Skeels (19:46)

Right.

Brendan Aylward (19:52)

explain that or other assessment protocols.

Sarah Everhart Skeels (19:53)

.Yeah, I can, and I love this. Cause I can connect us back to Alan Jette again, who's one of my most favorite humans in the world. And I was so bummed when he retired, but he has a right to go raise vegetables and build beautiful wooden things and raise bees and make honey and chickens and all the things he's doing now. But so the sci-fi was developed.

Brendan Aylward (20:00)

this.

Brendan Aylward (20:12)

Yes.

Sarah Everhart Skeels (20:20)

to as a different way of measuring ability, and capability, I'm gonna change, not ability, capability in those with spinal cord injury. Before that, you had the FIM or you had ASIA. And those are two benchmarks, but they were created by able-bodied people, very high-level researchers, but none of them living with.

disability, none of them living with spinal cord injury. So how do you know what the experience is? How do you really know what somebody's capability is? The way spinal cord injury is set up and taught is, you know, you have your spinal cord and you have where your lesion is. And, you know, you have a cervical lesion at C6, let's say. So then the thing everybody said, well, then you're never gonna do this instead of thinking about, well, what can you do with biceps and triceps? What can you do with that? What does that look like?

Um, so we set out to build, to create a more sensitive, measure of how a spinal cord injury might impact somebody. And, I went around and interviewed millions of people with question banks, prompt banks, and, and got their opinions, people with lived experience, their opinions on these questions, you know, somebody who uses a power chair in the old measure, not the sci-fi, the old measure would say, well, if you use a power chair, you are inherently.

dependent. And that's just not true. I know a lot of people who are extremely capable powered wheelchair users. You know, it takes a lot of skill to use a power chair. A lot of able-bodied people don't understand that. You know, sip and puff is really hard. You got to remember what to do when, or you're putting holes in walls and running into people and all of that. So I don't think it's equitable to

apply the same scale and say, well, which is in the hierarchy of the scale has always been, if you can walk, you are now you have now reached the apex of capability and yay, you congratulations. And, and I was, I said to Alan, this isn't right. You can't tell me that I'm not independent because I can't pop up a 10 foot curb. You know, I'm being exaggerating here, but.

Sarah Everhart Skeels (22:45)

So I argued with him about this idea of walking being, and not just Alan, the team, of this idea of walking being the epitome of what someone with a spinal cord injury, the judgment of your abilities and your capabilities. He listened and he agreed. And that's why we developed this measure the way we did, because it was much more comprehensive of the...

the lived experience of those with spinal cord injury.

Brendan Aylward (23:17)

Yeah, I think something like two and a half billion people use assistive technology, whether it's glasses or wheelchairs, and I don't mean to compare the two in any way. Obviously, it's drastically different. But like, do those scales that devalue assistive technology, like that if you're using a manual wheelchair, then you're lesser than that person who's using an exoskeleton to walk. And then that person that uses a power chair is less than that person that uses a manual wheelchair.

Sarah Everhart Skeels (23:25)

Oh no! It's right, though!

Sarah Everhart Skeels (23:45)

Right, right, right. It sets that up.

Brendan Aylward (23:48)

Should walking always be the goal? Yeah.

Sarah Everhart Skeels (23:50)

No, I can't walk and I'm okay with it. I let that go for some, for other people that might be their goal. I just think that we have to be really caught, you know, sometimes you get this idea that because you're walking, you're there for have no problems and you have nothing. And that's the answer. It's not the answer. You're a walking person, Brendan. Is your life perfectly perfect because only because you can walk, you know?

Brendan Aylward (24:20)

Yeah, yeah, because I think I sometimes see people invest so much of their time resources into that pursuit and obviously not diminishing that effort in any way. I'm sure, I don't know how I would cope as someone who loves running and stuff. If I was ever in that same situation, I would probably be really frustrated that I lost the ability to run in a bipedal manner. But yeah, I think I see a lot of people invest.

Sarah Everhart Skeels (24:44)

Yeah.

Brendan Aylward (24:47)

a lot of their time and energy into that pursuit of walking. Yeah, yeah, yeah.

Sarah Everhart Skeels (24:49)

and money, lots of money. And you know, I'm sitting here talking to you and I have to, I wanna be clear with the audience that I'm speaking for myself. I'm not trying to speak for the entire spinal cord injury population here. That is not who I am. I'm not representing, 200, or 400,000 people, but this idea of, you know, I was injured in 1990 and every 10 years,

something big comes like, you're gonna walk again. We did this with rats. And I'm like, if I was a rat right now, Brendan, I would be so set, it would be great. But I don't wanna be a rat, I'm a human. And I don't know when we're gonna get to this walking thing, but I can say that those of us with spinal cord injury still can work on our health. We still can be healthy. We still can be...

Brendan Aylward (25:24)

Hehehe

Sarah Everhart Skeels (25:47)

contribute to the world, we still can engage. And I think to be told from the get-go, you can't engage because of who you now inherently are is the problem. That's.

Brendan Aylward (26:02)

Yeah, maybe on the topic of that transition to sport and physical activity, what was that experience like? Because you went from being an elite athlete to then being an elite, like, adaptive athlete. Well, you went to a different avenue that now you're in Paralympic sports. So do you think that transition was harder? Do you think an acquired injury is harder to cope with than?

Sarah Everhart Skeels (26:15)

Not.

Sarah Everhart Skeels (26:18)

Yes.

Brendan Aylward (26:31)

maybe a chronic one, are there differences in the two?

Sarah Everhart Skeels (26:35)

You know, people ask that question all the time. And I was not, you know, I acquired a disability. I was 23. So I spent 23 years living one way. And then all the rest of the time, I've spent living differently. And I think, ugh. Can you ask me that question again?

Brendan Aylward (26:58)

Yeah, absolutely. Do you think an acquired injury has a different social emotional toll than a chronic one?

Sarah Everhart Skeels (27:01)

of required, yeah.

Sarah Everhart Skeels (27:05)

I think the difference is now after having been out in the world as long as I have as a disabled person with all the experiences I've had in the world, I think for someone who has an acquired disability, you can check back into when you didn't have a disability. And you can check back into that. And the struggle I think that somebody with an acquired disability has is, who am I now? Who am I now? If I don't know how to... And I've always thought that...

Um, really the key to navigating disability is sort of like, um, thinking about how do I express myself now? I'm, I don't know. That was my challenge is I was this very physical person. I define myself very physically. And then that was at the time, the way I looked at it, it was, it was taken away. It was gone in a minute, like gone. Like there was no, like.

warning, there was no class ahead of time to say, okay, well now you're gonna be paralyzed and here's a wheelchair and this is how you, none of that, you have to figure all that stuff out. And I think the journey is very important but the journey is just that, it's a journey and you have to figure that out of like, who am I and how am I going to express myself now in this world? And so as an athlete, when I first was navigating

rehabilitation, I was in it. Like, I was the best rehab patient you could be because I'm an athlete, right? So tell me what to do, tell me what to do, tell me what to do, always was pushing my therapist, pushing, because of where I wanted to go. And they worked with me, which was really nice and helpful. And so I think my rehab experience was not as hard as somebody who wasn't an athlete because

I knew how to work my body. And I wanted that because that felt like me, like I was tapping into me. And then, moving forward from that was, okay, I was an avid cyclist, I was a runner, I was a swimmer, I was a triathlete. And so how do I get back to some of that? And at the time, adaptive sport was really, not as big as it is now. And they had just developed hand cycles.

Sarah Everhart Skeels (29:32)

And I, you know, the internet, there was no internet in 1990, 1991, two. And so I wrote, I wrote letters to all these places I could find in the library that, that offered adaptive sport. Cause I, I was, you know, I was like, where can I find a bike? I just wanted a bike, even though I had, I didn't have the use of my right arm at the time, but I was like, I am going to find a bike and I'm going to ride it because, you know, and so I got this bike, it was old and heavy as a shadow mob.

three or something is a really old heavy upright hand cycle, but, and I could barely ride it, but I was doing it and it was really important to me. And that feeling of, of like tapping back into that inner, like inner athlete, I don't know how to describe it right now, but tapping into that was really helpful for me and it made me feel more like me. So then I thought, how am I going to find more of these experiences? And what got me into sailing

was just fun, but then what got me into competitive sailing was that because of my whole makeup, I don't classify well in many, many sports, but in sailing, I classify well, meaning I actually classify with, to be able to compete on an even level with everyone else, whereas like if I was skiing, they don't really have a category for me.

If I'm swimming, they don't really have a category. So I, and I'm not gonna push, I'm not gonna. wheelchair racing isn't something I can do. So it's not something I've ever really investigated much in other than give it a try and realize I'm just gonna go around in circles because of my brachial plexus injury. So sailing was sort of that way for me to be competitive again. And you know, you're a runner.

you may not be an Olympian, but you're a runner. Like that competitive feeling for some people is really, really important to tap into because that might be inherently a little bit of who they are. And you can be competitive in your career and you can be competitive in other spaces, but there's really nothing like being, to me, there's nothing like really being competitive in a sports arena. In my case, it's on the ocean or in a lake or in a bay or wherever you can sail.

Sarah Everhart Skeels (31:57)

but that's kind of how I found how I eventually ended up in sailing and I don't know, the Paralympic thing was just in front of me, so why not give it a try?

Brendan Aylward (32:06)

Yeah, yeah, absolutely. You had mentioned after your injury, maybe struggling to find resources. Obviously it's a lot different now than it was for a variety of reasons, but you've been working on a peer mentor program. I feel like the last time we talked maybe about a year ago, you had mentioned that you were just starting something. Maybe explain a little bit about what that is. Yeah.

Sarah Everhart Skeels (32:31)

Yeah, thank you for bringing that up. I wasn't expecting that. So I really believe in the power of a peer. I really believe that we learn best from other people's experiences. There's a lot of knowledge in that. There's a disability studies theorist who is no longer on this planet named Tobin Siebers who talks about complex embodiment.

which is looking at like how all humans, we have many identities and, you know, when you look at disability, which identities are present in what spaces, you know, and what does that mean? And in that, in all of that inherently is also at the knowledge that you develop over time as a disabled person, figuring it's an art, it's a way to live.

you know, ingeniously, because you're constantly solving problems and you're constantly navigating spaces that weren't made for you. And you get really good at it. there's a lot of knowledge in that and that you want to pass down. So, um, I, I've been a part of this research team looking at what if we take peer mentors and in this case, these are peer mentors with spinal cord injury, people who have been trained to mentor. And then we put them through more training of how to be a health coach. Uh, so.

over and we've researched this. We're in our third iteration now of looking at, we took people with spinal cord injuries. They had to be, have been a peer mentor for five years and want to become a coach. And that we go through about 90 some odd hours of training in motivational interviewing, in trauma informed care, in...

how in health management, all kinds of spaces. And then these people get certified in something called brief action planning, which has a motivational interviewing base. It's evidence-based and is shown to work. It was developed to be used in a clinical setting of a way to engage with people and help patients set goals that they can actually achieve.

Sarah Everhart Skeels (34:59)

And so that's what, and coaching can happen. The way we do this coaching is all through Zoom so that you eliminate the having to travel somewhere. You eliminate so many barriers that are experienced by those with spinal cord injury, those that, so I can meet with somebody and talk to them, like you and I are talking right now, and you can coach me and coach me through some of the challenges. And you, as someone with

let's say you have a spinal cord injury, you've had pressure sores before maybe. And so you know what it's like to navigate some of that and can support people with resources and information and education and just hacks you might have. And so I really believe that someone, so we call them SCI-PHC, so spinal cord injury peer health coaches. And it's like a community health worker, but sort of it's kind of in that same.

And what we're trying to do, what I eventually want to do is make this something that somebody can be paid for as a professional, as a member of a health care team, why not have a trained person who is also a peer who can help the health care team understand maybe where this person is right now in their whatever health situation they have. I really believe in this. I've been researching it, like I said, since 2014 maybe.

And now we've done this with working with people who have been injured past five years. And we found big benefits in that five to 10 year frame, timeframe for people. And we even can help people at any time. Anybody can benefit from a coach and from a health coach. And what we're doing next is we're going to be working with people who have been from point of injury to...

two years out, so that, oh, three years out, so the first three years, which is one of the more challenging times after you've acquired a disability when you're trying to still figure out your stuff. So stay tuned. I'm excited to see what's going to come of that, but I just think that there's a space for this, certainly in our healthcare system now, and I think connecting with peers is just a really powerful thing.

Brendan Aylward (37:19.)

Yeah, I think the lift experience piece is essential. When I did a podcast with a friend of mine, John, who has an SCI as well, he was like, yeah, I learned everything from YouTube. I was just YouTubing things. And he was like, that was my best education. And I was like, wow, so, yeah.

Sarah Everhart Skeels (37:28)

Right? Right.

Yeah, I mean, right now you have, and it's nobody's fault. I want to be careful here. It's nobody's fault, but our system is weird. We learn how to be disabled from non-disabled people. That's the model.

Brendan Aylward (37:48)

Yeah, yeah, absolutely. I mean, I could never speak on the lived experience of what you encounter on a day-to-day basis. I can only like try to learn and support you in that regard. So the peer mentor model is between two individuals with SCI, would you ever not want to be around?

other people with SCIs? Like after your injury, do you think there's some people that don't want to associate with the community and like how do you navigate that relationship of people that are resistant to support?

Sarah Everhart Skeels (38:14)

Oh, yes.

Sarah Everhart Skeels (38:22)

Well, I think that most people, after they initially experience a spinal cord injury, they're looking on the internet, they're looking everywhere. Their friends and family and everybody they know is out there scouring the internet, looking for the cure. And because it's so ever present and people talking about it.

it can really become the main focus of somebody. When am I walking again? And I used to go in and visit people while they were in inpatient rehab. I was a peer mentor in that space. I have been for a long time and I had to stop because nobody wanted. The person with the new spinal cord injury did not wanna see me because to them...

and understandably because of the messaging of the world. To them, I was a failure. I'm in a wheelchair. I am not at all what somebody wants to be. They wanna be walking out of here and there's that. Denial is a really, really important part of managing trauma. At some point, you have to work through that, but I think it's easier to focus on something that maybe you understand than something you don't. So somebody who has been walking

and then can no longer walk, they want to walk again. That's what they see as the point of all of this, not live again. that's the messaging that you get, is like we were talking about with the measurements of, well, you have to get all, you have to get return, muscle return in all the areas and that is going to allow you to be an independent person. And I don't believe that.

And so I think it's just this.

Sarah Everhart Skeels (40:16)

It's this navigation. Anyway, I got, I became a burned out peer mentor because I couldn't talk about walking anymore. Now, who did want to talk to me when I would go into the hospital setting? Family, friends, anybody who was able bodied and connected to this person who was like, wait a minute, how did you get here? I drove. You can drive? Like, yeah, it's not rocket science and it has been around. Hand controls have been around for a little.

time I am not amazing. Believe me. But that is like I didn't know you could drive, or most people unless you are in the world you see wheelchairs very differently. Like you Brendan know when you see you know like whoa that's a titanium chair and I know why you have all these parts to it right because you understand all this the general public.

doesn't know that there's a difference between wheelchairs, that hospital wheelchairs are ridiculous and you need a lightweight chair to get around. People just don't see those things like I do, like those of us who use them every day see them. So I think that what's nice about being this peer health coach, this peer health coach role is really nice for people like me who want to support

people in learning how to manage their spinal cord injuries better, but we just want to stop talking about things that nobody can do anything about right now. What you can do something about, I can't say, my PT, I had a really great PT in rehab and she used to say, I don't have a crystal ball. I really don't. I have no idea what the outcome of any of this is going to be. But what I do know is what is going on right now.

And what we can focus on right now are these things. We can focus on transferring. We can focus on getting stronger. We can focus on learning how to propel your chair better. Those kinds of things that are going to help me in my day-to-day life. So yeah, so the question you asked me, I've gone far from, I know, but I do think that this peer health coach role is a nice space.

Sarah Everhart Skeels (42:34)

for lots of people who are tired of talking about walking and wanna talk about living.

Brendan Aylward (42:39)

Yeah, I want to go far from the prompts, so I'm just here to listen to you talk. That's the general idea. You have a publication on the relationship between loneliness and health outcomes, so I think something like this, and it's not exclusive to the SCI population. I'm sure we can look at any population with or without a disability and probably find a correlation between the two. So

Sarah Everhart Skeels (42:45)

I'm hoping I'm giving you something that's worthwhile, Brendan.

Sarah Everhart Skeels (43:04)

Yes.

Brendan Aylward (43:08)

I guess maybe that's why I think the type of inclusive like training environment that we've created here in Massachusetts is important. Yeah, but I wonder like so your model is between multiple people with SCI. Sometimes I'm trying to push a model where it's people with and without disabilities seamlessly coexisting is.

Sarah Everhart Skeels (43:16)

Yes, vitally.

Brendan Aylward (43:33)

Is an environment that only trains people with disabilities or one type of disabilities inherently inclusive or do you think you need the incorporation of people without disabilities as well?

Sarah Everhart Skeels (43:44)

I like that, I actually think you could do either. I like it with everybody together. You know, the gyms that I've gone to in my, I don't have a gym right now, but when I, when I found gyms, they have been gyms that are fully, inclusive where I see all kinds of people and they see me. Because there's inherently education going on. As long as I'm able to say to somebody, let's, calm down on the inspiration porn here. I showed up here.

because it's accessible and I wanna work out. Having a spinal cord injury doesn't make me inspiring. It makes me need to be able, I have different needs than you do and how I'm going to work out. But it doesn't affect the fact that I don't wanna still be fit. Not everybody's spinal cord injury wants to be fit by the way. So anyway, I think as many, I'm a big believer in diversity. I think it's a superpower. I think we have it all, some people have it all wrong.

I think there's multiple ways of solving a problem. And when you get input from all the people involved, you're going to create a sustainable solution versus one that's only gonna last for a moment or a couple of weeks or whatever. So I think the way you are going, this is one of the reasons I really want to continue supporting you and your work. It's innovative.

Brendan Aylward (45:11)

Yeah.

Sarah Everhart Skeels (45:11)

And it needs, that's the model. To me, that's the model. I think this coaching thing is more of just a one-on-one, how am I going to get through to do the things I wanna do? And how do I, how am I gonna do that? How am I gonna navigate these potential health challenges in my life and so that I can move forward and do what I want, whatever that might be. I think that that's different than going to a place.

Because I might, during a coaching session, I might talk to somebody about going to a gym. You know, have you ever thought about going to a gym? You know, oh, I don't know if they know what I'm doing and I don't know what I'm doing and I don't know, you know, all these potential barriers that are real, not just imagined, but they are also imagined. You know, coming to your fitness center, nobody has those, like everything's accessible so there's no questions there. And you know what to do when somebody does show up. You understand that, how to help them or.

how to teach them what, you know, to use the equipment or whatever. So, you know, it's all the adaptive sport experiences that I have, you know, I like to ski, but I don't want to ski on a disabled mountain with disabled people, you know, like I don't even know what that looks like, but I want to go ski at Bretton Woods and I want to ski with all the people here and I want to get on all the lifts and why not? They're here for me. And then I'm skiing with people and they're skiing with me.

And I think there's a lot of power in that.

Brendan Aylward (46:42)

Yeah, and that's really only one of the only means of educating general population as a whole as to what people with disabilities can do, so it kind of reframes their expectations.

Sarah Everhart Skeels (46:52)

And I think it makes you more approachable. I think, and this is true time and time again in my life, when I appear in a wheelchair, everybody runs away from me. When I appear in my hand cycle, when I appear in my sit ski, when people see me using the equipment I use when I sail, now it's like, whoa, you do this too? How do you do it? And now it's like a visual representation of the fact that we have something in common.

Brendan Aylward (46:55.)

Absolutely.

Brendan Aylward (47:21)

Yeah, Spartan recreation can be so powerful, yeah.

Sarah Everhart Skeels (47:21)

Because a lot of people think, yeah, a lot of people don't think that they see somebody sitting in a wheelchair, see somebody with any, any visible disability, let's say, and like, oh, that's not me. Or in fact, oh my God, I hope that's never me. That's what people think when they see me, you know, oh my God, what happened? Was I born like this? Oh, there's always, can I have sex? And you know.

Those are the major questions of able-bodied people. And it's always fascinating, but it's the truth. I think when you can see that you actually have something in common with someone, it breaks down that really big barrier of you're really different than me and I'm never gonna get you.

Brendan Aylward (48:09)

Yeah, I remember a couple years ago you had mentioned in one of our conversations, I probably only remember it because it was confirmation bias for me at the time, but you mentioned that you almost preferred to work with personal trainers instead of physical therapists in some ways. What do you think is the line not to cross between what a personal trainer can do and what a physical therapist can do?

Sarah Everhart Skeels (48:34)

Ooh, that's a good question, especially in today's world where you have personal trainers who have all kinds of experience behind them. I think if you're dealing with a condition that the trainer doesn't quite understand, how far can I push your shoulder? A trainer would be like, we're going as much as we can, but maybe for me,

Brendan Aylward (48:37)

Yeah.

Sarah Everhart Skeels (49:03)

Uh, that isn't the, I used to, when I was in my Paralympic campaigns, I used to go see this awesome trainer, but he would train me to the point where I literally couldn't drive home after, after working out, I couldn't drive home. I had to sit for a half hour and recover before I was strong enough again to drive. You know, that's probably on the edge, you know, for, for an Olympic athlete, that's not on the edge at all. That's to me in my mind, that's standard, but, but in my life now.

I couldn't go see somebody who's gonna push me that much because I may not be able to do the things I need to do in my life that day. And so I think trainers don't always understand that. And there's no knock on trainers, by the way, I'm not trying to create an us in them world. I think a physical therapist might understand that more, but they may never push you hard enough as a result, right? So I think it's up to the person.

What they, what they prefer, who they prefer like working with, of course, there's always the insurance factor. But I think healthcare is very limiting to those practicing healthcare now. You're only allowed 15 minutes or whatever with a physical therapist, and you're never, you're gonna work with all the assistants and everybody else while they're supervising other people. You have a trainer, they're with you. they are training you, they are with you for that full hour or whatever that session time is.

and get to know you better and can develop this really powerful relationship. So I have better relationships with all the people that trained me than I do with physical therapy.

Brendan Aylward (50:40)

Yeah, and I just don't want disability to be continuously synonymous with injury, which seems to be the case when only physical therapists work with people with disabilities. And like you mentioned before, you don't wanna be a patient forever. How motivating is that to go to PT and do your prehab exercises, right, exactly, so.

Sarah Everhart Skeels (50:47)

Right, right.

Sarah Everhart Skeels (50:55)

No, the whole point is to get out. Yeah, I don't wanna spend my life in a gym of a, with a therapy gym. I would prefer to spend my time in a gym, like where I'm making my choices and making and doing the things I wanna do to get myself stronger. So I just think there's a point where you have to stop being a patient and you really have to move on and be a person. And the whole point of therapy.

is to prepare you for being in the community. And that's where you are. You are in the community, out there saying, I am here. maybe that would be a goal that somebody who's newly has, let's say, a spinal cord injury and they want, they're still an inpatient and maybe then they come home and they have to be an outpatient for a while, but their goal might be to be, I wanna go to unified health, I wanna go there. And what a great goal for therapy. And then now you're ready and you can be discharged from that and come into...

a place where you feel like a human, not a patient.

Brendan Aylward (51:57)

And you're focusing on what you can do instead of what you can't.

Sarah Everhart Skeels (51:59)

what you can do and not only that, but you're out in your world, living your world. And you're coming across the things, you know, in a, in a rehab setting, everything's kind of accessible. And the, you know, it's all like linoleum floors and you know, things are, there's bars and there's not always where they're supposed to be, but at least they're there and, um, and, and in the real world, none of that stuff is there. And so you have to navigate. If you want to be out in the real world, you have to learn how to navigate.

some structural inaccessibility. And I think that's what a trainer can help somebody do. More than a...

Brendan Aylward (52:34)

Yeah, yeah, and I always like collaborating with the clients, like medical team. So we'll get like, we got a client about a year ago post heart transplant. So I'm emailing with his pulmonary therapist from Spalding and asking her kind of how she sees the recovery going. And after a little while, she's like, all right, yeah, it's up to you.

I'm like, oh, all right, I guess we'll just keep going with what I think. So, but I'm also interested in like as we teach personal trainers and strength and conditioning coaches how to work with adaptive populations, like how I'm very interested in how I can measure.

Sarah Everhart Skeels (52:56)

I'm sorry.

Brendan Aylward (53:10)

that they've acquired and are able to apply the information. And I know I was reading something about your course at Brown and how you don't have a final exam. You have a community impact project. And I'm just really interested in, I guess, assessment of learning and application of learning. Because I mean, I want more gyms like mine to exist. But I'm not too naive to assume that someone can just take my online course and be ready to go.

Sarah Everhart Skeels (53:26)

Yeah, yeah, yes.

Brendan Aylward (53:39)

a dozen years of working with hundreds of people with disabilities and that portion is missed in the online learning. So I'm not sure if I'm going to expose like, oh, personal trainers can work with people with disabilities. Like, I want to make sure I'm sending them to the right people and the qualified people. And like you said, that know how to work with the adaptive population. So I'm not sure exactly how to gauge that or measure that.

Sarah Everhart Skeels (54:02)

Yeah, and it's not fair for you to try to measure it by then looking at the people who have taken your course and then seeing who has set something up. You know, who has made a gym that's like mine of these people that have taken my course? That's gonna be really unfair to you because there's so many other factors that are involved in setting up a gym. And I think you're right, that is a really interesting thing. I wonder if you could also measure attitude change of...

Brendan Aylward (54:22)

That's true.

Sarah Everhart Skeels (54:32)

who are the clients I can see now. I thought I only had, I mean, think about this from a market. I know you always think about this from a marketing perspective, which I love about you, Brendan, because you see disabled people as a market. And we are a market, but the rest of the world doesn't see us as a market, because they see us as charity cases, or as like, oh, well, you do that for free, right? And it's like, well, no, why would you offer this for free? Like, no, these are my services. I'm trained professional. No, it's not free. There's value here.

Brendan Aylward (54:54)

Yeah.

Sarah Everhart Skeels (55:01)

But I think that to me, in general, accessibility is more of an attitude. And what I mean by that is thinking about, of course, you can get there. If that's your baseline of, of course, you can get there, you're going to help somebody problem solve how to get there, wherever there is.

And I think there's a lot of value in that because so many people like, well, this is what you have. Good luck and walk away. Like that cardiologist said, you know, like, well, it's up to you now or the pulmonologist or whoever it was. And, and I, you know, basically like, Oh, my job is done here. Um, and, that's kind of the goal of healthcare is to discharge you. Right. But.

That isn't the goal of a fitness professional. The goal of a fitness professional is to keep people coming so they maintain or improve their strength, their fitness, their agility, their whatever they're working on, right? And so I do see some differences in those spaces too of healthcare provider, there's an end, trainer, there's no end.

Brendan Aylward (56:14)

Yeah, that's an interesting perspective I hadn't really considered because I think I was using how many programs like mine exist as a measuring stick to the efficacy of a course that I'm teaching and so now we're almost considering like, oh do I just do I need to open more gyms? Like that wasn't the avenue that I wanted to go, that's why I made the course in the first place because I didn't want to own a bunch of gyms. I wanted to help people run more inclusive programs but...

I'm like, huh, I'm teaching this class, like a few hundred people have taken it, and I haven't quite found another gym like mine yet that's existed. I'm like, okay, maybe I just have to keep going. But then we apply for grants, and they wanna see an impact. And so I'm like, okay, a few hundred people have taken my course. That's not really an impact though. That's a business thing for me, but it's not showing how many people with disabilities benefit.

from my couse, which is what the ultimate goal is. But I think, yeah.

Sarah Everhart Skeels (57:09)

Result.

Sarah Everhart Skeels (57:12)

I'm going to think about that. I'm not going to solve the problem during this podcast, but I really want to think about that. Maybe we can get another deck student for you.

Brendan Aylward (57:16)

Mm-hmm. Yeah.

Brendan Aylward (57:21)

I'm always open to working on projects like that.

Sarah Everhart Skeels (57:23)

That's a really interesting project, but I think there's things you could already do that would show what, and I wanna think on that because I do think that is, by looking at the gyms at events, I mean, you're looking, that's really tough for you to show impact in that way. I think you could show impact in quickly as a result of this course.

you could look at attitudes of people. You could have them take something pre and you could have them take something post the actual course that would show probably what they've learned. And then maybe you could contact those people a year later and ask some more questions that are a little more attached to the training that you do. Versus that big end product of who's running a gym like me. Like you said, like there's a lot that goes into that.

Brendan Aylward (57:53)

Yeah.

Brendan Aylward (58:05)

Yeah.

Brendan Aylward (58:11)

Yeah.

Yeah, I want to improve our pre and post-confidence surveys. We have some stuff in there, but it could definitely benefit from being more valid and reliable as a scale.

And just like, I mean, when we teach a course to YMCA, YMCA is a completely different model than my gym. So it's like, they're never gonna look like mine, but that doesn't mean they necessarily have to. I meet with a couple Massachusetts and New Hampshire branches on Friday to talk about like having a select few, and they've already had 50 plus trainers take the course, but we're trying to identify like a few that are more motivated in this area and then seeing how many people with disabilities they currently have in membership

Sarah Everhart Skeels (58:40)

That's great.

Brendan Aylward (58:54)

they can get with some more concerted efforts of recruiting and relationship building with community programs. So that will be an interesting project to just kind of see how it can influence like the YMCAs, which are perfect because they already have a price point to be accessible, a mission to be accessible. So they are really the perfect partner for me. I guess I might have to dissociate from like, it has to look like my gym. It doesn't have to look like my gym. Just people with disabilities just have to benefit from it.

Sarah Everhart Skeels (58:59)

Yeah.

Sarah Everhart Skeels (59:07)

They are. Yes.

Sarah Everhart Skeels (59:22)

I know the Quincy Y has, I've never been there. I know they have a big program. I know, and other than that, I know about, you know, the Shirley Ryan Center out in Chicago. Used to be the Rehabilitation Institute of Chicago, but now it's called the Shirley Ryan Center. They have a very big open gym where you have, you know,

Brendan Aylward (59:40)

Yeah.

Sarah Everhart Skeels (59:47)

Patients are going there all the time, right? So they can use it. They can use it after their discharge and just belong and go work out there. But also are the doctors and the nurses and the therapists and the administrative people and all the people that work there. So no, I don't think there's anything like what you have, but I think there's bits and pieces of it. And maybe the goal is more to figure out what are the bits and pieces that need to be in place for this to happen. And like you pointed out, one of those things is access to people.

Brendan Aylward (01:00:13)

Yeah.

Sarah Everhart Skeels (01:00)

And it's fascinating to me how few people are, I'm not marketed to, no one contacts me and says, hey, I've got this accessible gym, do you wanna come? Like when you watch the fitness center, those ads for like the big fitness centers, the 24 hour gyms and all those places, you don't see wheelchair users in those spaces.

And so as a wheelchair user, I'm like, well, I don't think I can go in there and use that equipment. So that's off to me and I only can go to therapy and I only can go to these because that's what's designed for me. And that isn't the case. So I think it's more of a marketing issue, um, in, in some ways. And, um, anyway, I think it's a, it's a really fun problem to try to solve and address, but I think the biggest thing in my mind is

getting people with disabilities to believe that they belong in a gym.

Brendan Aylward (01:01)

Yeah, that's, and I'm not conceited enough to say that like, oh, my model is the model that I need everyone to abide by. It's just, it's just that. It's, it's just a model. It's what I know. It's what we've done. And it's evolved over time. What it was five years ago probably shouldn't be what I'm teaching now. And so that's why the continual evolution of it's important.

Sarah Everhart Skeels (01:01)

Right. It's what you know. And it's what you've been building. Yeah.

Sarah Everhart Skeels (01:01:)

Yeah, but I think what you're doing is, what this course is awesome. And I think there are, you're at least opening up minds. And I think you might wanna measure more of those things because you can measure that. You can look at how did my course change the way this person approaches fitness with different populations.

Brendan Aylward (01:01)

Yeah, the marketing piece you mentioned is tough because sometimes it feels like you're almost exploiting someone's disability. Um, like you need to choose a physical one. I have clients with autism, intellectual disabilities that get shared on our feeds and you would never know, um, that they have that unless I'm like, Oh, look at this autistic athlete. Um, I'm never going to put that in a caption. So it's like how, I guess, how can you market to the population?

Sarah Everhart Skeels (01:02)

Right.

Brendan Aylward (01:02)

without exploiting or over-emphasizing the fact that you're inclusive is a challenge as well.

Sarah Everhart Skeels (01:02:)

Well, I think it's a challenge especially because I think you have to, that's when you go back to your membership and you ask them, what does exploiting look like to you? Because again, some people like me want to promote what you're doing. You know, we want to say this guy gets it. He is working really hard to make sure everybody is included in, in fitness and everybody should have access. That's a, that's an,

And is that a right to some, is that an inherent right that we all have to be able to move? Anyway, I don't want to get into that. I'm not a Greek philosopher. But yeah, I think it's, we still haven't discovered, this is still an issue, right? Nobody has discovered the exact formula of how to get, you know, for every one person you see out in the community with a disability, there's 10 at home not going anywhere because they don't think they can or they can't.

for whatever reason. So it's collectively a societal issue. I always think about disability as the last form of diversity that we have yet to fully embrace. And it's that final frontier of people don't think about disability as diversity, but it is. And it's the largest, one in what, 26% of the population, anywhere from 20 to 26, depending on what data set you're looking at.

lives with a disability. That's a large part of our population in the US. So there should be lots of opportunity. It's just people have decided that we are not marketable.

Brendan Aylward (01:04:08)

Yeah, and I know in like even in Jette's paper, he cites a study from, that just showed that like only half of physicians would welcome people with disabilities into their clinics and like 80% report that they assume that someone with a disability has a worse life. And those, those statistics are among the most educated of the people in the world. So like, how can we expect those that haven't even gone?

Sarah Everhart Skeels (01:04:18)

Yes.

Brendan Aylward (01:04:35)

to those lengths of education to have high expectations for people with disabilities. Kind of what you had mentioned earlier about rec, like you going out and skiing alongside people without and showing them and kind of facilitating those conversations seems to be a really important way to do it, but sometimes the challenge in front of us seems overwhelming in terms of the scope.

Sarah Everhart Skeels (01:04:58)

I get to work with these really wonderful young people, these students, and everybody wants to change the world. And I love that. But you can only change your little, you have to start in your corner and you have to start in your little space. You can't change everything. You have to be a part of that, right? A part of the push for change and, you know.

you've been leading the fight for a long time and it's so great that you are being rewarded for that. So many people, they try and maybe it doesn't work and then they get frustrated and just kind of stop. And I know that can make sense to people. Like you people just don't want this. And it's like, no, us people do want it. We just need to be, we've never been told that we can. And it's only people like me who have had

so much privilege and so much opportunity to know that I can do this. So I go out and seek it, but that's because of all the things I can do that I have access to. Somebody else who never knew this was available, has a much more challenging time of figuring out what it can look like in their lives. So I think that I might be biased a little bit by my experiences of, of course you can, but...

Not everybody can, but once they, once you do access it, it's like why, you know, you always hear that. I always hear this from, from people with disabilities, like, I don't know why I didn't do this sooner. I don't know why, you know, once you get them actually doing it and you know, some getting somebody on a sailboat for the first time or getting somebody skiing for the first time, like I love that because you get to see that like mind blown, like, oh my God, I didn't realize I could do this.

I can do this. Oh my God. And then families around them, we can do this as a family. We can go skiing. Like I didn't know we could do this. You know, and the possibilities, that's what health promotion is, right? It's being open, it's possibility and the opportunities of possibilities and yeah.

Brendan Aylward (01:07:07)

Yeah, when Dennis was with us senior year and he was doing his initial practicum with us through UMass Lowell for his exercise science degree and when he first told me he was going into OT, I was like, oh that was interesting. Most of our practicum students go into physical therapy. Why do you think some people go into PT versus OT and what are the different environments and what are the different goals, I guess?

Sarah Everhart Skeels (01:07:32)

Yeah, you know, when I was, when I didn't know about OT when I was all PT minded, because it's interesting and I'm not going to get into the politics of it because it's long and extended, but you know, back when I was in rehab, there was always this battle between what PTs did and what OTs did and you can't cross over and you can't do this.

You can, you know, drinking water is an OT activity, but walking to the water fountain is a PT activity. And like all this breaking up of body parts and people and saying, well, this goes here and that goes there. And I'm like, well, who puts it all together? So I think what physical therapists do is work on somebody's physical abilities. And what occupational therapists tend to do is look at what activities are meaningful to you.

Brendan Aylward (01:08:00)

Uh.

Sarah Everhart Skeels (01:08:24)

or what are the activities of daily living that you have to do? Like you have to, you know, most people get dressed in the morning or get dressed at some point during the day. Not everybody gets dressed in a suit, but you put on some kind of clothing or, you know, eating. Can you eat, you know, all those things. So OTs sort of are more in that physical therapists may help with the strength and the range of motion.

It seems like in this world, it's sort of separated and like PTs take from the waist down and OTs take upper extremities. I don't even think that's necessarily the case, but that's sort of where they have divided themselves. And so you can see OTs clinicians working in hand therapists like what Dennis likes. Some people really love working with hands and wrists.

and elbows and shoulders. And OTs can do that clinically, or they can work in, you know, they can work in mental health and they can work with kids with ASD and working in sensory processing. They can do all kinds of other things sort of that help you do what you wanna do. So I kind of look at basically, should be working in conjunction, should be working with each other, ideally when they work together.

with physical therapists, you can really work on the thing, getting that person strong and capable to do what they want to do. So I kind of see those as the differences. I'm sure there's a lot of people listening who would say, well, I would say this and I would say that. And, you know, I'm sure I'm missing some things, but, you know, fine motor skills with your hand and things like that. But like, like I had carpal tunnel issues, obviously, because I've had the use of

my one functional hand for 24 years. So obviously something's gonna happen. So I had surgery on it and I saw an OT because I wanted to see a hand therapist so that they could get my wrist and hand functioning again. After that, I went back to my trainer and worked with him. Now, some physical therapists work in that space too, but that's the path I took with.

Brendan Aylward (01:10:36)

Yeah.

Sarah Everhart Skeels (01:10:45)

rehabbing from my wrist. I just, I tend to try to avoid clinical medical experiences as much as possible because I don't like being medicalized and I don't like being limited and I don't like entering into spaces that are not designed for me. And it's fascinating to see the number of physician offices and practices that are not accessible. Don't have a bathroom I can use. Don't have a table I can use. Don't have pretty much anything that

that I can use in my recovery.

Brendan Aylward (01:11:17)

Is there a database of what offices and stuff do? How do you find the appropriate ones? Try on area, yeah.

Sarah Everhart Skeels (01:11:23)

Trial and error, unfortunately. Or like, I literally will drive by places. Like, does that look like I can get in? You know, because I don't want to have that experience of being late for an appointment because I couldn't get in. That has happened to me many times and it's very frustrating and you end up getting kicked out of the practice if you don't show up enough times. So I tend, I'm different maybe in a lot of ways. Like I tend to try to avoid as many medical interactions as I guess I can.

And I prefer to work with regular humans as much as possible. Because a physician, yes, they're educated, highly educated, but highly educated in one thing. And that is how a standard body works. That's what they learn.

Brendan Aylward (01:11:52)

Yeah.

Brendan Aylward (01:12:23)

Yeah, that stuff. I had a high school student come to the gym last week and I think this year she was introduced to like a unified PE class and really grasped it and really loved it. And that was actually a similar experience to kind of how I got into this in the first place with unified sports. But she was asking like, oh, how do I think she wants to pursue health sciences next year at the university where she's playing lacrosse and she's like, should I go to PT? Should I go to OT? Should I become an athletic trainer?

Sarah Everhart Skeels (01:12:32)

Move.

Brendan Aylward (01:12:37)

She's like, what'd you do to get here? And I'm like, well, I studied special ed, and then I went into this, and that. And there's really no one path. And I found myself struggling to guide her, not that it was my responsibility to guide her, but offer any suggestions that I felt had any substance in terms of what direction she should go and outside of accumulate as many experiences as possible.

Sarah Everhart Skeels (01:12:44)

Yeah.

Sarah Everhart Skeels (01:13:02)

I think that's the way to do it. You know, I initially, where I went to University of Virginia, as you said, and they didn't have a PT program there. And I didn't know I wanted to be a physical therapist when I entered school. And I thought I wanted, I don't know, I was like some 18 year old. I just wanted to go to Virginia and swim. And medicine, I knew I wanted to learn about the body. I just didn't know what, because I was 18. And I then was like, you know, being an athlete, because I, you know, inherently, if you're an athlete, you end up in the training room.

if you're doing it. I mean, back then, I think things are so different now, Brendan, than when I was a student athlete. Thank God, they're much better, much, much better. But, so I would go to the training room. I'm like, well, this is kind of cool. I wonder if I want to be this. And I could take classes in athletic training. It was an option at that school. And I was, I did my internships. I was in there taping ankles.

And it was a very male dominated world at the time. And a lot of, as a woman, even the athletes were like, you can't tape me, there's no way, I don't want you taping my ankle. Well, why? Cause you're a woman. Cause you could say that then in 1988. And I'd be like, really? Okay. And then I'd tape the shit out of their ankle and, excuse my language And then they'd be like, oh, you're stronger than you look. And we're like,

Brendan Aylward (01:14:23)

Mm-hmm

Sarah Everhart Skeels (01:14:32)

Yeah, don't mess with me. But then, back then, it was very male dominated and I was like, I really like the work, I don't like the environment. So I needed to experience that. And then I went to that PT, worked at the hospital and I was like, ooh, I really like this. I had never had the opportunity to work in a community-based setting because that would have been like everything for me because I'm a big community-based person, as you can tell, because that's where we should be out in the community.

Brendan Aylward (01:14:33)

Hehehe

Sarah Everhart Skeels (01:15:01)

Not in your face!

Brendan Aylward (01:15:03)

What do you think needs to be done to make the fitness industry or recreation more accessible?

Sarah Everhart Skeels (01:15:09)

I think more classes like what you're doing. I think the continuous, like, I think there's a good movement ahead. And you know, I'm not a social media person, but I think there's a lot, that's one of the things, like you said, your friend learned everything that they did about spinal cord injury from YouTube videos of people living with spinal cord injury talking about what they do. I think you can get a lot of information. I think it's dangerous because there can be some misinformation out there, but I don't know if it's any more dangerous than in a clinical environment.

So I think just the more people we have talking about this stuff and doing it, the more it's going to get the more people's expectations are going to sort of change, you know, it to, you know, you go into your gym. I'm sure I'm sure the people that initially when you have, you know, all your able-bodied members come in, they're like, wow, look at all this. At first, they must be like, whoa, is that's kind of how able-bodied people react if they have never.

been exposed to this, it's not their fault, it's just the way our society has set everyone up. And that after time, I'm sure in your gym, it's like, oh yeah, it's just these people and I see them as people and not as anything special and you're okay, you're getting stronger today or whatever, you know, and you get more of a us and us world, not an us and them world. And I think the more we continue pushing the us and us world, especially in adaptive sport and fitness.

the more and not make it this specialty of, well, you have to have a special ed background, for example. Like I don't even like the term special ed. Like it's neither special. I wouldn't say, you know, you have special and you have gifted. Which one in your world do you want to be? Right. The way we hierarchize all of this. But anyway, I've detracted again from the original question, but I think it's a slow process to change, to change minds.

you create almost little minions of people that are like, they are really passionate about this. I'm sure there are people that go through your class who are like, oh my gosh, I had no idea this was all here. I'm so excited. And you might get some other people that are like, this is really helpful. I don't know if it's for me. You know, obviously you can't push everybody into that space, but you can at least expose. And so I think the more exposure, the better.

Brendan Aylward (01:17:35)

Yeah, the expectations is an important thing. And that's where I like sometimes feel like such a, like a pessimist and a curmudgeon, but like I'm sometimes annoyed when I see people praising the rudimentary tasks. You mentioned inspiration porn. It's a topic that we've talked about at nauseam on the podcast with the various guests, but like.

Sarah Everhart Skeels (01:17:5)

Yeah, I'm sure.

Brendan Aylward (01:17:57)

That stuff does, I think it does more harm than good. When I see someone with Down syndrome and a trainer posts a video of them performing really bad pushups or really bad squats when the client would be perfectly capable of doing better with some proper instruction and then everyone in the comments is like, wow, this is so great. You're incredible referencing the trainer, not even referencing the athlete. That stuff's like, and that's always been so uncomfortable for me every time I...

Sarah Everhart Skeels (01:18:01)

Yes, it does.

Sarah Everhart Skeels (01:18:21.972)

Exactly.

Brendan Aylward (01:18:26)

every time I post something and the comments get directed at me instead of the athlete. It's so great that you do this for the kids. It's like, no, that's not what I'm trying to show. So that kind of goes back to the challenges of marketing and exploitation and stuff. And yeah, I think it's never ill-intentioned when people...

Sarah Everhart Skeels (01:18:30)

your athlete.

Yes!

Sarah Everhart Skeels (01:18:38)

Yeah.

Right.

Sarah Everhart Skeels (01:18:46)

no it's

Brendan Aylward (01:18:47)

when people say like, oh, that's great. Like, it's so awesome that you're doing that, but it's tough because I know it means that we're stuck in the certain level of expectation.

Sarah Everhart Skeels (01:18:56)

I get equally as frustrated, Brendan, maybe that's why we get along so well. But I think that it can drive you. I believe I've had an up and down space in all of that. Do I want to be a part of this? Do I not? I made a decision a lot. Let's see, it was when I went to graduate school. When I went to graduate school, I didn't want to, I had been injured for like.

Brendan Aylward (01:19:00)

I guess.

Sarah Everhart Skeels (01:19:22)

I'd had my spinal cord, I'm not injured anymore. I need to be clear about that. I live with something called a spinal cord injury. I'm not injured. Anyway, when I went to graduate school, it was in the first five years of my experience, of my acquired disability experience. And I forget what my point was. I had this whole point. I'm gonna get to my point. Can you say the question again? I'm sorry.

Brendan Aylward (01:19:48)

No, I don't know exactly. We were just talking about how inspirational comments and praising people with disabilities and praising, yeah.

Sarah Everhart Skeels (01:19:56)

Oh, I know. Yeah, yeah, sorry. Now I remember. I didn't, I was like, just because I am one doesn't mean I wanna. Oh, good.

Brendan Aylward (01:20:04)

We edit these too, so I can just completely trim out that. So you just go right into, you don't have an, you're not injured, you have a spinal cord injury.

Sarah Everhart Skeels (01:20:14)

Just because I am one doesn't mean I want to be in this world. So I definitely had a moment with myself where I was like, do I want to continue working in disability or do I want to work outside of that? And my thesis project was developing a bicycle safety video for middle school age kids on wearing helmets. It was called Helmet in a Jar.

And, or Jell-O in a Jar, that's right. I named it Jell-O in a Jar and it was used by the National Safe Kids Campaign, which is this big unintentional injury prevention organization, childhood injury prevention organization. And I thought that's what I wanted to do was, cause I was, I bought into all this, like you don't want to get, you don't want to be at, have a disability. So this is, you know, obviously bicycle safety matters. I'm alive because of a helmet. So I believe strongly in helmets. And anyway, I did that, but it wasn't as satisfying.

as when I, you know, one of the other projects I did was I developed an entire health curriculum for people with spinal cord injuries. This was in 1993. There wasn't anything like that. Nobody was talking about health promotion and disability. So I didn't have anybody to mentor me through the next phase of what that could look like. So I had to take on, and I think in the end, now that I think about it, it's because

of academic ableism and nobody saw my, what I wanted to do as valuable because nobody was talking about healthy disabled people. They were just talking about preventing disability. And I was more like, well, we're not going to prevent us. You know, eugenics didn't work. It's never going to work. So what do we do with all these people that are here and can't we make them, can't they become healthier? Of course they can. But there was nobody that was there to support more academic pursuit.

So I ended up going into nonprofit and going in this, like, I do want to work with disability. So it was an evolution for me as somebody living with disability to decide, is this the world I want to be in? And it was because I didn't want that, that you're amazing. You're amazing because you showed up here. And I'm like, I shouldn't be amazing because I showed up. It shouldn't be amazing, Brendan, that,

Sarah Everhart Skeels (01:22:33)

I can teach college. It shouldn't be that students have never been taught by somebody. It shouldn't be that you are the only access to adaptive phys ed education for people. It's just the way it is right now. And these are the things we have to trust that as we keep moving forward, this is gonna become a bigger movement. And it has, because I can tell you, when I started, this wasn't even an option, what you're doing.

wasn't even an option and now it's becoming something and I just feel like time ticks and everybody has their own concept of time but I believe we have to trust that moving forward as long as you keep the ball moving forward, it's going to keep moving forward and it may not look like what you want it to look like at the end but it may look like something you never expected also at the end. And I don't even know what the end looks like by the way, I hope we never get to the end.

Brendan Aylward (01:23:29)

Well, I think what you're doing is amazing because you've, I mean, you've built the curriculum similar to kind of what I aspire to do. You've educated, same thing, what I aspire to do. And I never got the opportunity to go into higher ed. I shouldn't say I never got the opportunity. I chose not to because at the time there wasn't really any incentive for me to have a master's degree in the private sector. You kind of dictate what you want. And I'm not even sure if there would have been an adaptive exercise, science masters I could have even really pursued. So it was kind of up to me to read as much as I could, kind of like the self-guided education that I had for the first few years. And I think it was encouraged by my being terrified of not having an answer for someone. And I think that was a motivation that was really strong. And I think it really led to a lot of my learning was just this concern that I wasn't going to.

going to be able to help whoever came in through the door. So yeah, like I think I say in the course that you're not expected to have all the answers, but you are expected to care enough to try to find the solutions. And I think if like maybe just lowering that fear level for fitness professionals and giving them permission, not to be negligent, but to take in this whole population that's currently not served.

Sarah Everhart Skeels (01:24:48)

Right, and you can start, maybe you don't have, maybe you don't have access for wheelchair users, but maybe that's something you work toward, but maybe you do have access for people with limb loss, or maybe you do have access to the myriad and large population of people that you, that we in the disability community think of as hidden or invisible disability, you know, those populations of people need fitness just as much as everybody else. And...

you're not going to necessarily find them by saying, looking for people with MS who haven't yet, I don't have to use a wheelchair yet. Obviously you're never gonna reach out to people like that, but you can, working with the clients you already have, I think you can talk to them about what got them there, what they think would be a good way to market what you do. And you don't have to use all those ideas, but why not take the ideas, like I said, of this diversity thing? Like use it as a superpower. Like, how would you promote this? I think it's always surprising to hear that some people have really good ideas. They just have never been asked.

Brendan Aylward (01:25:56)

I think that's a great way to wrap it up as I kind of, I feel like that like summarizes a lot of what we talked about, whether it's medical professionals, interactions with people with disabilities, or fitness professionals role in making the industry more inclusive. Sarah, it was an honor to talk to you. I went for an hour and a half and probably could have gone for another hour easily, but I don't want to take up too much of your day. So thank you, thank you for doing this. And I really look forward to sharing this episode.

Sarah Everhart Skeels (01:26:09)

Yeah.

Sarah Everhart Skeels (01:26:24)

Thank you, Brendan. I deeply appreciate our relationship and our, we will continue to work together, I know, and it's because of your leadership and your energy, and I value that highly. So thank you for having me. It's been an honor to be here. I hope I gave you something. Hope I gave you something worthwhile.

Brendan Aylward (01:27:45)

You certainly did. I thought that was probably the best of the 30 episodes I've done so far.