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Welcome to the ADAPTX podcast where we have conversations with individuals who are building

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accessible businesses, advocating for inclusion, or excelling in adaptive sports.

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Our intention is never to speak on behalf of those with disabilities, but provide them

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with a platform to share their ideas and insights to help us make the world more accessible.

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Today we are joined by Sarah Skeels.

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Sarah has a BS in exercise physiology from the University of Virginia, where she focused

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on adaptive exercise and a master's degree in public health from George Washington University.

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Sarah is a researcher, OT faculty at Tufts University, and senior teaching associate

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in the School of Public Health at Brown University.

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Sarah is heavily involved as both an athlete, coach, and board member in various adaptive

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sports organizations.

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Sarah, thank you for joining us today.

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Oh, thanks Brendan.

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It's awesome to be here.

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We first met about three years ago when one of my favorite interns of all time, shout

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out Dennis Peary, had you as an advisor for his doctoral capstone project at Tufts.

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This project revolved around making recreation, lawn games specifically, more accessible for

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people with cerebral palsy.

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I really enjoyed every meeting as we had, and it gave me the opportunity to learn from

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you and I'm glad we've stayed in touch over the years.

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Yeah, me too.

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I'm really happy.

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You've been the driving force in this, staying connected, and I appreciate it.

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Yeah, that's a very kind way of saying I continue to pester you over the years.

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You were a Division I swimmer at UVA studying exercise phys.

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I read that you had a focus on adaptive populations.

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Yes, I did.

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What encouraged you to do so because this was before your SEI?

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Yes, it was way before all of that.

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I was young and I was introduced to disability pretty early on in my life.

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I was in a Girl Scout group a long, long time ago and we had a person in our troop who lived

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with a disability.

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At the time when you're a little kid, you seem to think they don't know anything different

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of anybody and a lot of people treated her differently.

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I never understood that and I always hung out with her because she was a really nice

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person and I helped her out.

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She needed some help doing some things and I just sort of became more aware of the differences

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that happen sometimes when someone with a disability shows up in a space that, especially

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back then in the 70s, disability was really institutionalized at the time.

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Parents were told to put their kids in institutions and we had a very, you know, it wasn't like

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it is now, thankfully.

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So I think I carried that with me into school and when I could take adaptive, I started

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taking more adaptive fitness and adaptive, you know, just adaptive, everything I could

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that was adaptive, that was labeled adaptive at the time and it just was something that

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was really interesting to me because it's not just the basics, Brendan, it's applying.

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This is what I love about working with disability.

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It is unique.

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It is not standard and so you have to know your stuff because then you have to apply

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it to a non-standardized person and figure out how they're going to work, right, and

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how this is going to work for them and I find that it's like a puzzle.

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It's like organic chemistry, you know.

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This puzzle you put together that can turn out to, that ends up in this empowered person

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in the end if you're talking about adaptive sport and recreation.

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Yeah, we talk about how it's always really important to have a strong foundation and

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exercise physical strength and conditioning as a whole though so I guess it gives you

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all those different puzzle pieces to assemble.

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I think some people get into that space because they're interested in disability or they

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want to be an advocate for disability but you also have to do your due diligence of

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really knowing your stuff from an exercise science standpoint because that's what allows

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you to kind of creatively apply it to these unique situations but I think working with

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adaptive populations makes people better coaches for all populations and that's something we

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try to espouse with our course.

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Yeah, it really, you have to have really strong observation skills and really understand how

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body systems work and I mean the body's fascinating and anyway, you know, I was exposed to disability

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again as an undergraduate student when I decided to work as a physical therapy assistant at

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the UVA Medical Center at the time.

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It's now blown up into this huge thing.

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At the time, it wasn't as big as it is but I was then exposed to other people, you know,

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who are challenged in all these spaces and I was just like, why, why, you know, why,

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why does it have to be so hard for you and it's not as hard for me?

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I'm not talking about movement, I'm talking about access to the ability to move.

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Yeah, absolutely.

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What were your, exactly, at the time, did you have specific career goals like a specific

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environment that you wanted to be in or industry that you wanted to be in?

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I really wanted to go into rehab.

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I wanted to be a physical therapist and I wanted to go into rehab.

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Physical rehab is, you know, a challenge and I didn't get to do it as a clinician, I got

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to do it as a patient so it's all kind of weird in my case but I think, you know, my

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experience now isn't any, is probably more profound than it would have been if I had

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just become a physical therapist and moved on in my life.

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Ben, when just of one of many people, instead I have this really weird, this really weird

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experience of life and I'm in it to win it so whatever.

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That's a theme that I have heard from some of the other guests that we've had with SEIs,

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almost talking about how their life is better after their industry, sorry, after their injury

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and so you've kind of found that to be the same, right?

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It's given you more purpose and kind of a unique path.

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Yeah, it's a unique, and I wouldn't say, you know, I don't know, you know, you don't know

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what life is going to be on, you know, you only know your experience so I can guess what

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could have happened and I don't know the paths I would have taken.

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I can only guess about that.

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I know what I've done in my life and I think what my injury brought me is this idea that,

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you know, there's one life we have here.

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There's one.

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This is not a dress rehearsal.

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This is for real and wanting to live it as much as possible became what I wanted to do

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and I don't know if I would have had that same verve and motivation had I not had a

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traumatic experience that took away what I thought was me, you know, and then I had to

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learn that there's a lot more to me than just my physical self and, you know, and then we

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want to tie it back into physical activity and recreation and fitness.

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You can't be your best self if you can't be there and I think, you know, like everybody

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is an athlete at this point when you are a wheelchair user in this world, especially

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in the snow, et cetera, you are an everyday athlete.

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Whether you want to be or not to navigate the world as a wheelchair user, you have to

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figure things out all the time.

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Yeah, absolutely and we can talk a little bit about barriers to accessibility specifically

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a little later on.

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You were initially accepted into PT school and then that offer was rescinded because

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of your injury.

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Yes, it was.

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What was that experience like and have you encountered a lot of ableism kind of in the

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industry?

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Yeah, so the industry, our world is ableist so we have to start with that and that understanding

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and it's something that's slowly changing but we just live in this world right now where

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physicality is highly valued and those of us who are physical but present ourselves

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differently, i.e. maybe as in a wheelchair, maybe somebody using crutches and a prosthetic

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limb, any of those spaces, you know, we all of a sudden can't.

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The word can't is attached to us so quickly just at glance from somebody.

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But I think my whole initial career trajectory or my hopeful path ended in a way that was

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very upsetting to me, you know, to deny me to say to me, and this was back in 1990 before

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the ADA was really a law and I was so caught up in rehabilitating myself that I really

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I bought into it.

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No, I can't be a physical therapist because all I was thinking about was all the things

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that I had done or that I had seen being done in rehab and was like, how am I going to do

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these things?

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And you know, now looking back 30 some odd years later, I could have figured it out.

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I would have been a very good clinician but that wasn't my path and I had to be open to

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the fact that maybe, you know, up until that point, the world had worked for me.

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You know, I have the right color skin.

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I had the right, you know, I was very, you know, I was talented in a sport.

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I was able to just access things all the time.

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I had a lot of privilege and I didn't understand all that privilege and my spinal cord injury

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certainly exposed me to what privilege means and what it doesn't mean.

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And I think it was my first time to come up against that and we weren't using language

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like that back in the 90s.

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But I think that learning how to fit into a society that wasn't, didn't want me and

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didn't value me and especially healthcare, which is about as most able as place you can

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be unfortunately is in healthcare.

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And I would say that that's just, it's just that because I think rehab is like you have

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in medicine, it's all about trying to be as normal as you can as far as whatever this

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normalized standard person is that you're this profile.

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And I knew I was never going to get to that.

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And so what I eventually did was realize I can live outside the lines.

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Nobody has any, unfortunately, nobody has any expectations for me.

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I have high expectations for me and I had to realize it all had to come from me because

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I could just have given up.

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I could have just stopped.

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I could have said, you're right.

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I can't because I can't because and this happens all day, every day for lots of people.

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I can't because dot dot dot and that because dot dot dot is the thing.

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And what does that really mean?

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And I had to look into that and I'm not, I'm not suggesting that that's an excuse.

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I'm just saying it was something I had to look more deeply into.

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What does that mean?

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And at the time I was in my twenties, I wasn't ready to give up.

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I was ready to start and fight and push.

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And so I think it was actually in the end, it really pulled out my my strong inner athlete

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and and and helped me.

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My my my inner athlete really helped me move through a lot of frustration and disappointment

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and into a better space.

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That reminds me of a paper from Alan Jette, who I know you're familiar with, called the

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Paradox of Physical Therapy, where he talks about how like the physical therapy industry

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is claiming to value diversity while also establishing these pre-established norms that

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everyone is supposed to move towards.

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And so that kind of opens up the debate.

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Debate is probably too strong of a word, but between like the medical model versus a social

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model of disability.

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And while I do think it's essential to adopt the social model, that's the first module

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that we introduce in the course that we teach to fitness professionals.

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But I guess where do you think both kind of fall or what value do both the social model

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and the medical model have in a highly medical field like physical therapy?

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Yeah, you know, I just gave a I just gave a lecture to the Brown, the let's see, the

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Warren Alpert, the Brown Medical School third year class, and it was about the medical and

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the social model and what does it even mean?

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They don't learn, you know, I think I think it's I don't know the exact so I want to

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make sure the audience understands I don't have the exact number here, but less than

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30%, I think of medical schools actually have a curriculum for disability.

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And my guess is that's very similar in physical therapy as well.

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I didn't go to PT school, I didn't go to medical school, but I've been involved in working

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on the curriculum at the Brown Medical School to try to at least introduce disability a

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little bit more to them.

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And we this was what I was talking about was the medical model and the social model and

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what does it mean in medicine?

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And in my opinion, you know, someone with a disability has developed their status quo,

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whatever that status quo is in their life.

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So they initially, you know, if you acquire a disability like I did, you know, you have

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the health management issues, you have to learn how to get through.

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And you create your okay, this is how I manage my bladder.

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And I know when I have a UTI or I know when I don't.

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So I know when to seek medical care, because I am out of whack.

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Where am I out of whack?

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And so so when my symptoms flare up, and I want to get back to my status quo of my general

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health, that's when medical model helps because we can figure out, you know, what are the

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symptoms?

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I go to an expert, a health care provider, who I will demand works with me not to me,

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not at me, but with me to figure out what what is feasible for me, what is reasonable

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for me, what can I do, you know, and then I go back to my social model, which is I'm

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chugging along, this is my this is who I am, I'm moving along in my day, my disability

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is very I don't want to say the word control is a dangerous word, in my opinion, but things

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are are relatively managed, manageable, and I'm doing fine.

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And in that case, I don't, I may not go to a physician or an OT or a PT to make anything

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better.

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I might be going to there or to cure me to cure something because that's not going to

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happen.

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I might like need to get get back to where I was, you know, or get a little bit stronger.

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But those are my goals, not somebody else's goals for me.

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Those are my things that I want to do.

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So I see the social and medical model, all it can work together.

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And and I don't think we need to attack the medical model.

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But I think we need to be aware of when is it useful and when is it a barrier.

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And unfortunately, it has that has to be driven by the person by the but when we enter healthcare,

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we'll call patients, which I've never understood, because it does require significant patients

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different spelling to be a patient.

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But when we're out in the regular world, I'm not a patient.

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I'm a human being, and I don't like being called a patient when I'm not in medical care.

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So it's just it's when the medical model comes out into the real world and starts walking

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around and putting a lot of unnecessary and I'm going to use the word barriers again,

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or challenges in front of somebody for really no good reason, in my opinion, for no good

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reason other than, well, you're different, and you're different in a way that isn't

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valued. And so you therefore are inherently never going to get to what we want you to

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get to we we being the medical world saying, well, physiologically, this is perfection,

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and and or standard and you're not never going to get there because you have a spinal cord

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injury and I said, and I say to that, well, then what's my standard as my as my person,

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that's more my responsibility to figure out my standard is, and then when I'm outside

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of my standard, that's when I can go seek assistance and if it has to be medical.

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Yeah, no, absolutely. And towards that last point, like the benchmark or the standard.

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I'm interested in that not from not from the lens of like, GMFCS, like cerebral palsy,

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where like I have to label you at a certain level, but more so as a means of evaluating

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the efficacy of like my training. So if we if we have a client with an SEI, what do I

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need to measure? Where is progress shown? What can I expect? Is the goal completely

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client driven? Like, it doesn't just depend on what you want to accomplish. Are there

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things that you don't know that a medical professional should maybe know that they should

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educate you on? Or are you always doing the educating? So I know you I know you helped

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develop the sci fi. Can you maybe explain that or other assessment protocols?

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Because I can connect us back to Alan Jette again, who's one of my most favorite humans

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in the world. And I was so bummed when he retired, but he has a right to go raise, raise

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vegetables and build beautiful wooden things and raise bees and make honey and all kinds

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and chickens and all the things he's doing now. But so the sci fi has was developed to

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as a different way of measuring ability, a capability, I'm going to change not ability,

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capability in those with spinal cord injury. Before that, you had the the FIM and or you

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had Asia. And those are two benchmarks, but they were created by able bodied people, able

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body very in very high level researchers, but none of them living with disability, none

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of them living with spinal cord injury. So how do you know what the experience is? How

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do you really know what somebody's capability is? The way spinal cord injury is set up and

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taught is, you know, you have your your spinal cord and you have where your lesion is and

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and you know, you have a cervical lesion at C six, let's say. So then the thing everybody

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said, well, then you're never going to do this instead of thinking about what can you

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do with biceps and triceps? What can you do with that? What does that look like? And so

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we set out to build to create a more sensitive measure of how a spinal cord injury might

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impact somebody. And I went around and interviewed millions of people with question banks, prompt

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banks and got their opinions, people with lived experience, their opinions on these

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questions, you know, somebody who uses a power chair in the old measure, not the sci fi,

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the old measure would say, well, if you use a power chair, you are inherently dependent.

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And that's just not true. I know a lot of people who are extremely capable powered wheelchair

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users, you know, it takes a lot of skill to use a power chair. A lot of able bodied people

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don't understand that. You know, sip and puff is really hard. You got to remember what to

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do when or you're putting holes in walls and running into people and all of that. So I

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don't think it's equitable to apply the same scale and say, well, which is in the hierarchy

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of the scale has always been if you can walk, you are now you have now reached the apex

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of capability and yay you congratulations. And, and I was, I said to Alan, this isn't

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right. You can't tell me that I'm not independent because I can't pop up a 10 foot curb. You

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know, I'm being exaggerating here, but so I argued with him about this idea of walking

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being not just Alan, the team of, of this idea of walking being the epitome of what

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someone with this spinal cord injury, you know, the judgment of, of your abilities and

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your capabilities. And, and he listened and he, you know, agreed. And that's why we developed

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this measure the way we did, cause it was much more comprehensive of the, the lived

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experience of those with spinal cord injury. Yeah. I think something like two and a half

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billion people use assistive technology, whether it's glasses or wheelchairs. And I don't mean

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to compare the two in any way, obviously, obviously it's drastically different, but

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like, do those scales that devalue assistive technology, like that if you're using a manual

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wheelchair, then you're lesser than that person who's using an exoskeleton to walk. And then

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that person that uses a power chair is less than that person that uses a manual wheelchair.

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Should walking always be the goal? No, I can't walk and I'm okay with it. I, I

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let that go for some, for other people that might be their goal. I, I just think that

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we have to be really caught, you know, sometimes you get this idea that because you're walking,

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you're therefore have no problems and you have nothing. And that's the answer. It's

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not the answer. I'm, you're a walking person, Brendan is, is your life perfectly perfect

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because only because you can walk, you know? Yeah. Yeah. Cause I think I sometimes see

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people invest so much of their time resources into that pursuit and obviously not diminishing

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that effort in any way. I'm sure, I don't know how I would cope as someone who loves

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running and stuff. If I was ever in that same situation, I would probably be really frustrated

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that I lost the ability to run in a bipedal manner. But yeah, I think I see a lot of people

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invest a lot of their time and energy into that pursuit of walking. And money, money,

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lots of money. And you know, I, I'm sitting here talking to you and I have to, I want

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to be clear with the audience that I'm, I'm speaking for myself. I'm not trying to speak

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for the entire spinal cord injury population here. That is not who I am. I'm not representing,

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you know, 200, you know, 400,000 people. But this idea of, of, you know, every, I was injured

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in 1990 and every 10 years, something big comes like, you're going to walk again. We

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did this with rats. And I'm like, if I was a rat right now, Brendan, I would be so set,

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it would be great. But I don't want to be a rat. I'm a human. And, and, and I don't

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know when we're going to get to this walking thing, but I can say that those of us with

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a spinal cord injury still can work on our health. We still can be healthy. We still

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can be contribute to the world. We still can engage. And, and I think to be told from the

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get go, you can't engage because of who you now inherently are is the problem.

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Yeah. Maybe, yeah. Maybe on the topic of that transition to sport and physical activity,

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what was that experience like? Cause you went from being an elite athlete to then being

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an elite, like not to bath late. Well, well you went to a different avenue that now you're,

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you're in Paralympic sports. So do you think like that transition was harder? Do you think

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an acquired injury has a different social emotional toll than a chronic one?

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Yeah. I think the difference is now after having been out in the world as long as I

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have as a disabled person with all the experiences I've had in the world, I think it, I think

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for someone who has an acquired disability, you can check back into when you didn't have

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a disability and you can check back into that. And the struggle I think that somebody with

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an acquired disability has is who am I now? Who am I now? If I don't know how to, and

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I've always, I've always thought that really the key to navigating disability is sort of

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like thinking about how do I express myself now? I'm, I'm, I don't know. That was my challenge

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is I was this very physical person. I define myself very physically. And then that was

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at the time, the way I looked at it, it was, it was taken away. It was gone in a minute,

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like gone. Like there was no like warning. There was no class ahead of time to say, okay,

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well now you're going to be paralyzed and here's a wheelchair. And this is how you,

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you know, none of that, you have to figure all that stuff out. And I think the journey

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is very important, but the journey is, is, is, is, is just that it's a journey and you

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have to figure that out of like, who am I and how am I going to express myself now in

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this world? And so as an athlete, when I was, when I first was navigating rehabilitation,

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I was in it. Like I was the best rehab patient you could be because I'm an athlete, right?

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So tell me what to do. Tell me what to do. Tell me what to do. Always was pushing my

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therapist, pushing, pushing, pushing because of where I wanted to go. And they worked with

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me, which was really, which was really nice and helpful. And so I think my rehab experience

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was, was not as hard as, as somebody who wasn't an athlete because I knew how to work my body.

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And I wanted that because that felt like, that felt like me, like I was tapping into

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me and then, you know, moving forward from that was okay. You know, I was an avid avid

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cyclist. I was a runner. I was a swimmer. I was a triathlete. And so how do I get back

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to some of that? And at the time, you know, adaptive sport was really, really in the,

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not as big as it is now. And they had just developed hand cycles and I, you know, the

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internet, there was no internet in 1990, 1991, two. And so I wrote, I wrote letters to all

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these places I could find in the library that, that offered adaptive sport. Cause I, I was,

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you know, I was like, where can I find a bike? I just wanted a bike, even though I had, I

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didn't have the use of my right arm at the time, but I was like, I am going to find a

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bike and I'm going to ride it because, you know, and so I got this bike, it was old and

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heavy as a shadow, Mach three or something is a really old, heavy upright hand cycle.

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But, and I could barely ride it, but I was doing it and it was really important to me

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and that feeling of, of like tapping back into that inner, like inner athlete. I don't

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know how to describe it right now, but tapping into that was really helpful for me and it

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made me feel more like me. So then I thought, how am I going to find more of these experiences?

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And what got me into sailing was just fun. But then what got me into competitive sailing

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was that because of my whole makeup, I don't, I don't classify well in many, many sports,

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but in sailing, I classify well, meaning I actually classify with, with, to be able to

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compete on an, on an even level with everyone else. Whereas like if I was skiing, they don't

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really have a category for me. If I'm swimming, they don't really have a category. So I, and

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I'm not going to push, I'm not going to wheelchair racing isn't, isn't something I can do. So

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it's not something I've ever really investigated much in other than give it a try and realize

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I'm just going to go around in circles because of my, my brachial plexus injury. So sailing

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was sort of that way for me to be competitive again. And you know, you're a runner, you

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know, you may not be an Olympian, but you're a runner. Like that competitive feeling for

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some people is really, really important to, to tap into because that might be inherently

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a little bit of who they are. And you can be competitive in your career and you can

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be competitive in other spaces, but there's really nothing like being to me, there's nothing

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like really being competitive in a, in a, in a, in a sports arena. You know, in my case,

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it's on the ocean or in a, in a lake or in a bay or wherever you can sail. But that's

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kind of how I found how I eventually ended up in, in sailing. And I don't know, the

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Paralympic thing was just in front of me. So why not? Why not give it a try? Yeah. Yeah,

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absolutely. You had mentioned after your injury, maybe struggling to find resources. Obviously

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it's a lot different now than it was for a variety of reasons, but you've been working

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on a peer mentor program. I feel like the last time we talked maybe about a year ago,

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you had mentioned that you were just starting something. Do you want to maybe explain a

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little bit about what that is? Yeah. Yeah. Thank you for bringing that up. I wasn't expecting

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that. So I really believe in the power of, of, of a peer. I really believe that we learn

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best from other people's experiences. There's a lot of knowledge in that. There's a, there's

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a, a, a disability studies theorist who is no longer on this planet named Tobin Siebers

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and who talks about complex embodiment, which is looking at like how all humans, we have

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many identities and you know, when you look at disability, which identities are present

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in what spaces, you know, and what does that mean? And in that, in, in all of that inherently

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is, is also the, the, the, um, the knowledge that you develop over time as a disabled person

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figuring it's an art, it's, it's a way to live, um, you know, ingeniously because you're

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constantly solving problems and you're constantly navigating spaces that weren't made for you.

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And you get really good at it. And there's a lot of knowledge in that and that you want

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to pass down. Uh, so, um, I, I've been a part of this research team looking at what if we

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take peer mentors and in this case, these are peer mentors with spinal cord injury,

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people who have been trained to mentor, and then we put them through more training of

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how to be a health coach. Uh, so, uh, over and, and we've researched this, we're on our

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third iteration now of looking at, uh, we, we took people with spinal cord injuries,

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uh, they had to be, um, have been a peer mentor for five years and, uh, want to become a coach

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and that we go through about 90, 90 some odd hours of training, uh, in motivational interviewing,

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in, um, uh, trauma informed care in how, in, in health management, you know, all kinds

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of spaces. And then we, uh, these people get certified in something called brief action

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planning, which has a motivational interviewing, um, base. It's evidence, uh, it's evidence

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based and is shown to work. It was developed for, uh, to be in the clinical, to be used

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in a clinical setting of, you know, a way to engage with people and, um, help people,

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help patients set goals that are, that they can actually achieve. Um, and so that's what,

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and coaching can happen. The way we do this coaching is all through zoom so that you,

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you eliminate the, having to travel somewhere, you eliminate so many barriers that are experienced

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by those with spinal cord injury, those, uh, that, so I can meet with somebody and talk

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to them like, like you and I are talking right now and you can coach me and coach me through

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some of the challenges and you, as someone with, let's say you have a spinal cord injury,

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you've had pressure sores before maybe. And so you know what it's like to navigate some

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of that and can support people with resources and information and education and just hacks

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you might have. Um, and so I really believe that, that someone, and so we call them, um,

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SCI PHC. So spinal cord injury, peer health coaches, and it's like a community health

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worker, but sort of it's, it's kind of in that same vein. And what we're trying to do,

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what I eventually want to do is make this something that somebody can be paid for it

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as a professional, as a, as a member of a healthcare team, why not have a trained person

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who is also a peer who can, who can help the healthcare team understand maybe where this

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person is right now in, in their, whatever health situation they have. I really believe

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in this. I've been researching it, like I said, since 2014 maybe. And, um, and now our

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neck, our, we've done this with working with people who have been injured past five years

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and, um, we found big benefits in that five to 10 year frame, a timeframe for people.

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And we even can help people at any time. You, anybody can benefit from a coach and from

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a health coach. And what we're doing next is we're going to be working with people who

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have been from, from point of injury to, to, uh, two years out. So that, oh, three years

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out. So the first three years, which is the one of the more challenging, uh, times after

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you've acquired a disability when you're trying to still figure out your stuff. So stay tuned.

401
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Um, I'm excited to see what's going to come of that, but I'm, I'm, I just think that there's

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a space for this certainly in our healthcare system now. And I think connecting with peers

403
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is just a really powerful thing. Yeah. I think the left experience piece is essential. When

404
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I, when I did a podcast with a friend of mine, John, uh, who has an SCI as well, he was like,

405
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yeah, I learned everything from YouTube. I was just YouTube thing. And he was like, that

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was my best education. I was like, wow. So yeah. Right now you have, and it's not, it's,

407
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it's not, it's nobody's fault. I want to be careful here. It's nobody's fault, but our

408
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system is weird. We learn how to be disabled from non-disabled people. That's the model.

409
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Yeah. Yeah. Yeah, absolutely. And, um, I mean, I could never speak on the lived experience

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of, of what, uh, you encounter on a day-to-day basis. I can only like try to learn and support

411
00:35:24,480 --> 00:35:30,820
you in that regard. Um, I, so the, the peer mentor model is between two individuals with

412
00:35:30,820 --> 00:35:38,060
SCI. Um, would you ever not want to be around other people with SCIs? Like after your injury,

413
00:35:38,060 --> 00:35:42,660
do you think there's some people that don't want to associate with the community and like,

414
00:35:42,660 --> 00:35:49,100
how do you navigate that relationship of people that are resistant to support? Well, I think

415
00:35:49,100 --> 00:35:56,540
that, uh, most people after they initially experienced a spinal cord injury, uh, they're,

416
00:35:56,540 --> 00:36:01,420
they're looking on the internet, they're looking everywhere, their friends and family and everybody

417
00:36:01,420 --> 00:36:08,540
they know is out there scouring the internet, looking for the cure. Right. And, and, and

418
00:36:08,540 --> 00:36:14,700
because it's so ever present and people talking about it, it can really become the main focus

419
00:36:14,700 --> 00:36:18,940
of somebody. When am I walking again? When am I walking again? When am I walking again?

420
00:36:18,940 --> 00:36:24,620
And I used to go in and visit people at, at, you know, while they were in like inpatient

421
00:36:24,620 --> 00:36:29,420
rehab, um, and be, I was a peer mentor in that space. I have been for a long time and

422
00:36:29,420 --> 00:36:35,540
I've had, I had to stop because all people, nobody wanted the, the person with the new

423
00:36:35,540 --> 00:36:41,660
spinal cord injury did not want to see me because to them and understandably because

424
00:36:41,660 --> 00:36:48,260
of the messaging of the world, uh, to them, I was a failure. I'm in a wheelchair. I am,

425
00:36:48,260 --> 00:36:53,100
I am not, I am not at all what somebody wants to be. They want to be walking out of here

426
00:36:53,100 --> 00:36:57,860
and the, and, and there's that, you know, denial is a really, really important part

427
00:36:57,860 --> 00:37:04,300
of managing trauma. Um, at some point you have to work through that, but, um, I think

428
00:37:04,300 --> 00:37:08,740
it's easier to focus on something that maybe you understand than something you don't. So

429
00:37:08,740 --> 00:37:13,660
somebody who has been walking and then can no longer walk, they want to walk again. That's

430
00:37:13,660 --> 00:37:20,700
what they see as, as the point of all of this, not live again. And, um, and that's the messaging

431
00:37:20,700 --> 00:37:26,700
that you get is, is like we were talking about with the measurements of, well, you have to

432
00:37:26,700 --> 00:37:31,460
get all, you know, all you have to get return muscle return in all the areas. And that is

433
00:37:31,460 --> 00:37:37,460
going to allow you to be an independent person. And, um, and I, I don't, I don't believe that.

434
00:37:37,460 --> 00:37:47,240
Um, and so I think it's just this, it's this navigation anyway. Um, I got, I became a burned

435
00:37:47,240 --> 00:37:52,580
out peer mentor because I couldn't talk about walking anymore. Now, who did want to talk

436
00:37:52,580 --> 00:37:59,540
to me when I would go into the hospital setting, family, friends, anybody who was able bodied

437
00:37:59,540 --> 00:38:05,580
and connected to this person who was like, wait a minute, how did you get here? I drove,

438
00:38:05,580 --> 00:38:10,780
you can drive like, yeah, it's not rocket science and it has been around hand controls

439
00:38:10,780 --> 00:38:16,820
have been around for a long time. I am not amazing. Believe me. Uh, but that is like,

440
00:38:16,820 --> 00:38:21,660
I didn't know you could drive or you know, what kind of, you know, most people, unless

441
00:38:21,660 --> 00:38:28,000
you are in the world, you see wheelchairs very differently. Like you, Brendan know when

442
00:38:28,000 --> 00:38:34,140
you see, you know, like, whoa, that's a titanium chair. And I know why you have all these parts

443
00:38:34,140 --> 00:38:39,620
to it. Right. Cause you, you understand all this. The general public doesn't know that

444
00:38:39,620 --> 00:38:44,340
there's a difference between wheelchairs that hospital wheelchairs are ridiculous and you

445
00:38:44,340 --> 00:38:49,580
need a lightweight chair to get around. Like people just don't see those things like, like

446
00:38:49,580 --> 00:38:58,580
I do, like, like those of us who use them every day see them. Um, so I, I think, I think

447
00:38:58,580 --> 00:39:04,020
that, um, what's nice about being this peer health coach, this peer health coach role

448
00:39:04,020 --> 00:39:10,480
is really nice for people like me who want to support people in learning how to manage

449
00:39:10,480 --> 00:39:14,500
their spinal cord injuries better. But we just want to stop talking about things that

450
00:39:14,500 --> 00:39:20,260
nobody can do anything about right now. Like what you can do something about, I can't say,

451
00:39:20,260 --> 00:39:24,700
you know, my, my PT, my, my, I had a really great PT and, um, in rehab and she used to

452
00:39:24,700 --> 00:39:29,780
say, I don't have a crystal ball. I really don't. And so I have no idea what the outcome

453
00:39:29,780 --> 00:39:34,060
of any of this is going to be. But what I do know is what is going on right now. And

454
00:39:34,060 --> 00:39:38,140
what we can focus on right now are these things. You know, we can focus on transferring, we

455
00:39:38,140 --> 00:39:43,420
can focus on getting stronger. We can focus on learning how to propel your chair better,

456
00:39:43,420 --> 00:39:48,300
you know, those kinds of things that are going to help me in my day to day life. Um, so,

457
00:39:48,300 --> 00:39:55,380
um, yeah. So the question you asked me, I've gone far from, I know, but I do think that,

458
00:39:55,380 --> 00:40:02,140
uh, the, the, this peer health coach role is a nice space for lots of people who are,

459
00:40:02,140 --> 00:40:06,140
who are tired of talking about walking and want to talk about living. Yeah. I want to

460
00:40:06,140 --> 00:40:10,420
go far from the prompts. So, um, I'm just here to listen to you, you talk. That's, that's

461
00:40:10,420 --> 00:40:15,460
the general idea. I'm hoping I'm giving you something that's worthwhile, Brenton. Absolutely.

462
00:40:15,460 --> 00:40:20,060
You are, um, you have a publication on the relationship between loneliness and health

463
00:40:20,060 --> 00:40:24,660
outcomes. So I think like something like this, and it's not exclusive to the SCI population.

464
00:40:24,660 --> 00:40:29,980
I'm sure we can look at any population with or without a disability and probably, um,

465
00:40:29,980 --> 00:40:37,420
yes, find a correlation between the two. So, um, I guess maybe that's why I think the type

466
00:40:37,420 --> 00:40:42,780
of inclusive like training environment that we've created here in Massachusetts is important.

467
00:40:42,780 --> 00:40:49,420
Um, vitally, vitally. But I wonder like, so your model is between multiple people with

468
00:40:49,420 --> 00:40:55,660
SCI. Sometimes I'm trying to push a model where it's people with and without disabilities

469
00:40:55,660 --> 00:41:01,740
seamlessly coexisting is, is an environment that only trains people with disabilities

470
00:41:01,740 --> 00:41:07,600
or one type of disabilities inherently inclusive, or do you think you need the incorporation

471
00:41:07,600 --> 00:41:12,540
of people without disabilities as well? I like that. I actually think, well, I think

472
00:41:12,540 --> 00:41:17,340
you could do either. I like it with everybody together. You know, the gyms that I've gone

473
00:41:17,340 --> 00:41:21,940
to in my, I don't have a gym right now, but when I, when I found gyms, they have been

474
00:41:21,940 --> 00:41:27,740
gyms that are fully, that are inclusive where I see all kinds of people and they see me,

475
00:41:27,740 --> 00:41:35,180
uh, because there's inherently education going on. As long as I'm able to say to somebody,

476
00:41:35,180 --> 00:41:40,140
let's, let's, let's calm down on the inspiration porn here. Um, I showed up here because it's

477
00:41:40,140 --> 00:41:44,660
accessible and I'm making, I want to work out having a spinal cord injury. It doesn't

478
00:41:44,660 --> 00:41:50,100
make me inspiring. It makes me a need to be able to, I have different needs than you do

479
00:41:50,100 --> 00:41:55,180
and how I'm going to work out, but it doesn't affect the fact that I don't want to still

480
00:41:55,180 --> 00:42:01,660
be fit. Not everybody's spinal cord injury wants to be fit by the way. So anyway, I think,

481
00:42:01,660 --> 00:42:06,300
I think as many, I, I'm a big believer in diversity. I think it's a superpower. I think

482
00:42:06,300 --> 00:42:11,100
we have it all. Some people have it all wrong. I think there's multiple ways of solving a

483
00:42:11,100 --> 00:42:15,620
problem and when you get input from all the people involved, you're going to, you're going

484
00:42:15,620 --> 00:42:22,380
to create a sustainable solution versus one that's only going to last for a moment or,

485
00:42:22,380 --> 00:42:26,860
you know, a couple of weeks or whatever. So I think the way you are going, this is one

486
00:42:26,860 --> 00:42:33,260
of the reasons I really want to continue supporting you and your work is it's, it's, it's ground,

487
00:42:33,260 --> 00:42:39,100
it's innovative. Um, and you don't see it like that, but it is, and it needs, that's

488
00:42:39,100 --> 00:42:45,380
the model to me. That's the model. I think this coaching thing is more of just a one-on-one.

489
00:42:45,380 --> 00:42:50,060
How am I going to get through to do the things I want to do and how do I, how am I going

490
00:42:50,060 --> 00:42:55,140
to do that? How am I going to navigate these potential health challenges in my life? Uh,

491
00:42:55,140 --> 00:43:00,380
and so that I can move forward and do what I want, um, whatever that might be. And, and

492
00:43:00,380 --> 00:43:07,820
I think that, that that's different than going to a place because I might, during a coaching

493
00:43:07,820 --> 00:43:11,640
session, I might talk to somebody about going to a gym. You know, have you ever thought

494
00:43:11,640 --> 00:43:14,780
about going to a gym? You know, Oh, I don't know. I don't know. I don't know if they know

495
00:43:14,780 --> 00:43:19,220
what I'm doing and I don't know what I'm doing and I don't know, you know, all these potential

496
00:43:19,220 --> 00:43:23,980
barriers that are, that are real, not just imagined, but they are also imagined. Um,

497
00:43:23,980 --> 00:43:28,580
you know, coming to your, your fitness center, nobody has those, like everything's accessible.

498
00:43:28,580 --> 00:43:32,420
So there's no questions there and you know what to do when somebody does show up. You

499
00:43:32,420 --> 00:43:38,240
understand that how to help them or how to teach them what, you know, to use the equipment

500
00:43:38,240 --> 00:43:43,820
or whatever. So I like, you know, it's like all the adaptive sport experiences that I

501
00:43:43,820 --> 00:43:49,180
have, you know, I like to ski, but I don't want to ski on a, on a disabled mountain with

502
00:43:49,180 --> 00:43:52,620
disabled people, you know, like, I don't even know what that looks like, but I want to go

503
00:43:52,620 --> 00:43:57,780
ski at Bretton woods and I, and I want to ski with all the people here and I want to

504
00:43:57,780 --> 00:44:02,960
get on all the lifts and why not? They're here for me. And, and then I'm skiing with

505
00:44:02,960 --> 00:44:07,780
people and they're skiing with me. And I think there's a lot of power in that.

506
00:44:07,780 --> 00:44:13,060
Yeah. And that's, and that's really only one of the, one of the only means of educating

507
00:44:13,060 --> 00:44:16,740
the general population as a whole as to what people with disabilities can do. So it kind

508
00:44:16,740 --> 00:44:20,460
of reframes their expectations. And I think it makes you more approachable.

509
00:44:20,460 --> 00:44:26,620
I think this is true time and time again in my life. When I appear in a wheelchair, everybody

510
00:44:26,620 --> 00:44:32,220
runs away from me. When I appear in my hand cycle, when I appear in my sit ski, when I,

511
00:44:32,220 --> 00:44:37,740
when people see me using the equipment I use when I sail now, it's like, wow, you do this

512
00:44:37,740 --> 00:44:44,380
too? How do you do it? And now, now it's like, it's like a visual representation of the

513
00:44:44,380 --> 00:44:48,900
fact that we have something in common. Yeah. Spartan recreation can be so powerful.

514
00:44:48,900 --> 00:44:54,060
Yeah. Yeah. A lot of people don't think that they see somebody sitting in a wheelchair

515
00:44:54,060 --> 00:44:59,900
or see somebody with any, any visible disability, let's say, and like, Oh, that's not me. Or

516
00:44:59,900 --> 00:45:05,240
in fact, Oh my God, I hope that's never me. That's what people think when they see me,

517
00:45:05,240 --> 00:45:12,740
you know, Oh my God, what happened? Was I born like this? Oh, there's always, can I

518
00:45:12,740 --> 00:45:19,140
have sex? And, you know, you know, those are the major questions of people, of able bodied

519
00:45:19,140 --> 00:45:25,860
people. And, and it's always fascinating, but it's, it's the truth. And I think when

520
00:45:25,860 --> 00:45:30,620
you can see that you actually have something in common with someone, it breaks down that

521
00:45:30,620 --> 00:45:34,820
really big barrier of you're really different than me and I'm never going to get you.

522
00:45:34,820 --> 00:45:40,220
Yeah. Yeah. I remember a couple of years ago, you had mentioned in one of our conversations,

523
00:45:40,220 --> 00:45:43,820
I probably only remember it because it was confirmation bias for me at the time, but

524
00:45:43,820 --> 00:45:48,100
you, you mentioned that you were, you almost preferred to work with personal trainers instead

525
00:45:48,100 --> 00:45:54,940
of physical therapists. And in some ways, what do you think is the line to like not to cross

526
00:45:54,940 --> 00:45:58,980
between what a personal trainer can do and what the physical therapist can do?

527
00:45:58,980 --> 00:46:03,940
Ooh, that's a good question. Especially in today's world where you have personal trainers,

528
00:46:03,940 --> 00:46:10,240
you have all kinds of experience behind them. I think, I think the, the, I think if you're

529
00:46:10,240 --> 00:46:20,740
dealing with a, a condition that you're the trainer doesn't quite understand, like, you

530
00:46:20,740 --> 00:46:25,360
know, how far can I push your shoulder? You know, a trainer would be like, we're going

531
00:46:25,360 --> 00:46:31,980
as much as we can. Right. But, but maybe for me, that isn't the, I used to, when I was

532
00:46:31,980 --> 00:46:36,300
in my Paralympic campaigns, I used to go see this awesome trainer, but he would train me

533
00:46:36,300 --> 00:46:40,220
to the point where I literally couldn't drive home after, after working out. I couldn't

534
00:46:40,220 --> 00:46:47,320
drive home. I had to sit for a half hour and recover before I was strong enough again to

535
00:46:47,320 --> 00:46:52,580
drive. You know, that's probably on the edge, you know, for, for an Olympic athlete, that's

536
00:46:52,580 --> 00:46:56,860
not on the edge at all. That's to me, in my mind, that's standard, but, but in my life

537
00:46:56,860 --> 00:47:02,060
now I couldn't go see somebody who's going to push me that much because I may not be

538
00:47:02,060 --> 00:47:07,940
able to do the things I need to do in my life that day. And so I think trainers don't always

539
00:47:07,940 --> 00:47:14,260
understand that. And there's no knock on trainers, by the way, I'm not trying to create an us

540
00:47:14,260 --> 00:47:20,040
in them world. I think a physical therapist might understand that more, but they may never

541
00:47:20,040 --> 00:47:27,020
push you hard enough as a result. Right? So I think, I think it's up to the person, what

542
00:47:27,020 --> 00:47:31,900
they, what they prefer, who they prefer, like working with, of course, there's always the

543
00:47:31,900 --> 00:47:38,820
insurance factor. But I think healthcare is very limiting to those practicing healthcare

544
00:47:38,820 --> 00:47:44,260
now. You're only allowed 15 minutes or whatever with a physical therapist and you're never,

545
00:47:44,260 --> 00:47:48,060
you're going to work with all the assistants and everybody else while they're supervising

546
00:47:48,060 --> 00:47:52,540
other people. You have a trainer, they're with you. They're with you. They are training

547
00:47:52,540 --> 00:47:57,500
you. They are with you for that full hour or whatever that session time is and get to

548
00:47:57,500 --> 00:48:02,660
know you better and can develop this really powerful relationship. So I have better relationships

549
00:48:02,660 --> 00:48:06,020
with all the people that trained me than I do with, with this.

550
00:48:06,020 --> 00:48:13,140
Yeah. And I just, I just don't want disability to be continuously synonymous with injury,

551
00:48:13,140 --> 00:48:17,420
which it seems to be the case when like only physical therapists work with people with

552
00:48:17,420 --> 00:48:20,900
disabilities and like you mentioned before, you don't want to be a patient forever. Like

553
00:48:20,900 --> 00:48:26,100
how motivating is that to go to PT and do your pre-hab exercises? Right. Exactly.

554
00:48:26,100 --> 00:48:32,940
I don't want to spend my life in a gym of a, of a, with, with a therapy gym. You know,

555
00:48:32,940 --> 00:48:37,660
I would prefer to spend my time in a gym, gym, like where I'm making my choices and

556
00:48:37,660 --> 00:48:42,820
making and doing the things I want to do to get myself stronger. So I just think there's

557
00:48:42,820 --> 00:48:47,100
a point where you have to stop being a patient and you really have to move on and be a person.

558
00:48:47,100 --> 00:48:51,660
And the whole point of therapy is to prepare you for being in the community. And that's

559
00:48:51,660 --> 00:48:56,300
where you are. You are in the community out there saying, I am here. And maybe, maybe

560
00:48:56,300 --> 00:49:00,420
that would be a goal that somebody who's newly has, let's say a spinal cord injury and they

561
00:49:00,420 --> 00:49:04,540
want, you know, they're still an inpatient and maybe then they, they come home and they

562
00:49:04,540 --> 00:49:09,180
have to be an outpatient for awhile. But their goal might be to be, I want to go to unified

563
00:49:09,180 --> 00:49:14,020
health, you know, I want to go there and, and what a great goal for therapy. And then

564
00:49:14,020 --> 00:49:19,420
now you're ready and you can be discharged from that and come into a place where you

565
00:49:19,420 --> 00:49:24,740
feel like a human, not a patient. Yeah. And you're focusing on what you can do instead

566
00:49:24,740 --> 00:49:29,500
of what you can't do. Not only that, but you're out in your world, living your world and you're

567
00:49:29,500 --> 00:49:34,500
coming across the things, you know, in a, in a rehab setting, everything's kind of accessible

568
00:49:34,500 --> 00:49:41,460
and the, you know, it's all like linoleum floors and you know, things are, there's bars

569
00:49:41,460 --> 00:49:46,260
and there's not always where they're supposed to be, but at least they're there. And, and,

570
00:49:46,260 --> 00:49:49,660
and in the real world, none of that stuff is there. And so you have to navigate, if

571
00:49:49,660 --> 00:49:54,260
you want to be on the real world, you have to learn how to navigate some structural inaccessibility.

572
00:49:54,260 --> 00:50:01,300
And I think that's what a trainer can help somebody do. Yeah. Yeah. And I, I always like

573
00:50:01,300 --> 00:50:06,980
collaborating with the clients, like medical teams. So we'll get like, we got a client

574
00:50:06,980 --> 00:50:11,940
about a year ago, post heart transplant. So I'm emailing with his pulmonary therapist

575
00:50:11,940 --> 00:50:17,340
from Spalding and asking her kind of how she sees the recovery going. And after a little

576
00:50:17,340 --> 00:50:21,340
while she's like, all right, yeah, it's up to you. I'm like, oh, all right, I guess,

577
00:50:21,340 --> 00:50:25,540
well, I guess we'll just, we'll just keep going with what I think. So, but I'm also

578
00:50:25,540 --> 00:50:29,540
interested in like, as we teach personal trainers and strength and conditioning coaches, how

579
00:50:29,540 --> 00:50:36,220
to work with adaptive populations, like how, I'm very interested in how I can measure that

580
00:50:36,220 --> 00:50:41,820
they've acquired and are able to apply the information. And I know I was reading something

581
00:50:41,820 --> 00:50:46,620
about your course at Brown and how you don't have a final exam. You have a community impact

582
00:50:46,620 --> 00:50:53,500
project and I'm just really interested in, I guess, assessment of learning and application

583
00:50:53,500 --> 00:50:59,420
of learning. Cause I mean, I want more gyms like mine to exist, but I'm not too naive

584
00:50:59,420 --> 00:51:05,360
to assume that someone can just take my online course and be ready to go. This is a dozen

585
00:51:05,360 --> 00:51:09,740
years of working with hundreds of people with disabilities and that, that portion is missed

586
00:51:09,740 --> 00:51:14,640
in the online learning. So I'm not sure if I'm going to espouse like, oh, personal trainers

587
00:51:14,640 --> 00:51:19,280
can work with people with disabilities. Like I want to make sure I'm sending them to the

588
00:51:19,280 --> 00:51:22,460
right people and the qualified people. And like you said that know how to work with the

589
00:51:22,460 --> 00:51:29,220
adaptive population. So I'm not sure exactly how to gauge that or measure that. Yeah. And

590
00:51:29,220 --> 00:51:32,980
it's not fair for you to try to measure it by then looking at the people who have taken

591
00:51:32,980 --> 00:51:38,300
your course and then seeing who has set something up, you know, who has made a gym that's like

592
00:51:38,300 --> 00:51:44,020
mine of these people that have taken my course. That's going to be really unfair to you because

593
00:51:44,020 --> 00:51:49,660
that there's so many other, other factors that are involved in setting up a gym. And

594
00:51:49,660 --> 00:51:56,380
I think you're right. That is a really interesting thing. I wonder if you could also the measure

595
00:51:56,380 --> 00:52:01,180
attitude change of who are the clients I can see now. I thought I only had, I mean, think

596
00:52:01,180 --> 00:52:04,500
about this from a market. I know you always think about this from a marketing perspective,

597
00:52:04,500 --> 00:52:10,580
which I love about you, Brendan, because you see disabled people as a market and we are

598
00:52:10,580 --> 00:52:14,300
a market, but the rest of the world doesn't see us as a market because they see us as

599
00:52:14,300 --> 00:52:18,580
charity cases or as like, oh, well you do that for free, right? And it's like, well,

600
00:52:18,580 --> 00:52:24,220
no, why would you offer this for free? Like, no, these are my services. I'm trained professional.

601
00:52:24,220 --> 00:52:36,580
No, it's not free. There's value here. But I think that to me in general, accessibility

602
00:52:36,580 --> 00:52:43,820
is more of an attitude. And what I mean by that is thinking about, of course you can

603
00:52:43,820 --> 00:52:48,580
get there, right? If that's your baseline of, of course you can get there, you're going

604
00:52:48,580 --> 00:52:53,860
to help somebody problem solve how to get there, wherever there is, right? And I think

605
00:52:53,860 --> 00:52:58,540
there is a lot of value in that because so many people like, well, this is what you have.

606
00:52:58,540 --> 00:53:02,340
Good luck and walk away. Like that cardiologist said, you know, like, well, it's up to you

607
00:53:02,340 --> 00:53:07,540
now or the pulmonologist or whoever it was. And I, and I, I, you know, basically like,

608
00:53:07,540 --> 00:53:14,340
oh, my job is done here. Um, and, and that's kind of the goal of healthcare is to discharge

609
00:53:14,340 --> 00:53:20,460
you, right? But that isn't the goal of a, of a fitness professional. The goal of a fitness

610
00:53:20,460 --> 00:53:26,620
professional is to keep people coming so they, they maintain or improve their strength, their

611
00:53:26,620 --> 00:53:32,780
fitness, their agility, their whatever they're working on. Right. And, um, and so I, I do

612
00:53:32,780 --> 00:53:39,540
see some differences in those spaces too of, um, healthcare provider, there's an end trainer.

613
00:53:39,540 --> 00:53:44,020
There's no end. Yeah. That's, that's interesting perspective. I hadn't really, I hadn't really

614
00:53:44,020 --> 00:53:49,480
considered it because I think I was using how many programs like mine exist as a measuring

615
00:53:49,480 --> 00:53:54,460
stick to the efficacy of a course that I'm teaching. And so now we're almost considering

616
00:53:54,460 --> 00:53:58,980
like, oh, do I just, do I need to open more gyms? Like that, that wasn't the avenue that

617
00:53:58,980 --> 00:54:02,300
I wanted to go. That's why I made the course in the first place, cause I didn't want to

618
00:54:02,300 --> 00:54:07,060
own a bunch of gyms. I want to help people run more inclusive programs. But I'm like,

619
00:54:07,060 --> 00:54:12,980
huh, I'm teaching this class, like a few hundred people have taken it and I haven't quite found

620
00:54:12,980 --> 00:54:16,700
another gym like mine yet that's existed. I'm like, okay, maybe I just have to keep

621
00:54:16,700 --> 00:54:22,340
going. But then we apply, then we apply for grants and they want to see an impact. And

622
00:54:22,340 --> 00:54:26,620
so I'm like, okay, a few hundred people have taken my course. That's not really an impact

623
00:54:26,620 --> 00:54:32,460
though. That's a business, uh, thing for me, but it's not showing how many people with

624
00:54:32,460 --> 00:54:38,460
disabilities benefit from my course, which is what the ultimate goal is. Um, but I think

625
00:54:38,460 --> 00:54:43,140
I'm not going to solve the problem in during this podcast, but I really want to think about

626
00:54:43,140 --> 00:54:49,220
that. Maybe we can get another deck student for you. I'm always open to, uh, working on

627
00:54:49,220 --> 00:54:54,820
projects like that. But I think there's things you could already do that would show what

628
00:54:54,820 --> 00:55:02,220
I want to think on that because I do think that that is by looking at the gyms at events,

629
00:55:02,220 --> 00:55:07,460
I mean, you're, you're looking, that's, that's really tough for you to show impact in that

630
00:55:07,460 --> 00:55:13,740
way. I think you could show impact in quickly as a result of this course, you could look

631
00:55:13,740 --> 00:55:17,700
at attitudes of people. You could have them take something pre and you can take something

632
00:55:17,700 --> 00:55:23,340
post the actual course that would show, uh, probably what they've learned. But, but, and

633
00:55:23,340 --> 00:55:28,100
then maybe you could contact those people a year later and ask some more questions that

634
00:55:28,100 --> 00:55:35,460
are a little more attached to the training that you do that versus that big end product

635
00:55:35,460 --> 00:55:40,540
of who's running a gym like me. Like you said, like there's a lot that goes into that.

636
00:55:40,540 --> 00:55:45,020
I want to improve our pre and post confidence, uh, surveys. We have some stuff in there,

637
00:55:45,020 --> 00:55:49,300
but, um, it could definitely benefit from being more valid and reliable as a scale.

638
00:55:49,300 --> 00:55:53,980
Um, and just like, I mean, when we teach a course, so YMCA, YMCA is a completely different

639
00:55:53,980 --> 00:55:58,100
model than my gym. Uh, so it's like, they're, I don't, they're never going to look like

640
00:55:58,100 --> 00:56:03,340
mine, but that doesn't mean they necessarily have to. I meet with a couple, um, Massachusetts

641
00:56:03,340 --> 00:56:08,300
and New Hampshire branches on Friday to talk about like having a select few, and they've

642
00:56:08,300 --> 00:56:13,980
already had 50 plus trainers take the course, but we're trying to identify like a few that

643
00:56:13,980 --> 00:56:18,700
are more motivated in this area and then seeing how many people with disabilities they currently

644
00:56:18,700 --> 00:56:23,180
have in membership and then how many they can get with some more concerted efforts of

645
00:56:23,180 --> 00:56:27,940
recruiting and relationship building with community programs. So, um, that, that will

646
00:56:27,940 --> 00:56:31,580
be an interesting project to just kind of see how it can influence like the YMCA is,

647
00:56:31,580 --> 00:56:35,460
which are perfect because they already have a price point to be accessible, a mission

648
00:56:35,460 --> 00:56:39,300
to be accessible. So they are, they are really the perfect partner for me. It's just like,

649
00:56:39,300 --> 00:56:43,780
I guess I might have to dissociate from like, it has to look like my gym. It doesn't have

650
00:56:43,780 --> 00:56:48,140
to look like my gym. Um, just people with disabilities just have to benefit from it.

651
00:56:48,140 --> 00:56:54,260
I know the Quincy Y has, I've never been there. I know they have a big program. Um, and I

652
00:56:54,260 --> 00:56:59,500
know, and other than that, I know about, you know, the Shirley Ryan center out in Chicago,

653
00:56:59,500 --> 00:57:05,180
um, used to be the rehabilitate rehabilitation Institute of Chicago, but now it's called

654
00:57:05,180 --> 00:57:12,540
the Shirley Ryan center. They have a very big, uh, uh, open gym where you have, uh,

655
00:57:12,540 --> 00:57:15,900
you know, patients are going there all the time, right? So they, they can use it. They

656
00:57:15,900 --> 00:57:20,300
can use it after their discharge is belong and go work out there, but also are the doctors

657
00:57:20,300 --> 00:57:24,900
and the nurses and the therapists and the administrative people and all the people that

658
00:57:24,900 --> 00:57:29,100
work there. So, no, I don't think there's anything like what you have, but I think there's

659
00:57:29,100 --> 00:57:33,500
bits and pieces of it. And maybe the goal is more to figure out what are the bits and

660
00:57:33,500 --> 00:57:41,140
pieces that need to be in place for this to happen. And like you pointed out, one of those

661
00:57:41,140 --> 00:57:50,220
things is access to people. And it's fascinating to me, um, how few people are, I'm not marketed

662
00:57:50,220 --> 00:57:56,060
to, no one contacts me and says, you know, Hey, I've got this accessible gym. Do you

663
00:57:56,060 --> 00:58:02,220
want to come? Like when you, when you watch, uh, the fitness center, those ads, um, for

664
00:58:02,220 --> 00:58:07,340
like the big fitness centers, you know, the 24 hour gyms and all those places, you don't

665
00:58:07,340 --> 00:58:13,220
see, you don't see wheelchair users in those spaces. And so as a wheelchair user, I'm like,

666
00:58:13,220 --> 00:58:18,020
well, I don't think I can go in there and use that equipment. So that's off to me and

667
00:58:18,020 --> 00:58:22,460
I only can go to therapy and I only can go to these because that's what's designed for

668
00:58:22,460 --> 00:58:27,580
me. And that isn't the case. So I think it's more of a marketing issue, um, in, in some

669
00:58:27,580 --> 00:58:33,540
ways. And, um, anyway, I think it's a, it's a really fun problem to try to solve and address.

670
00:58:33,540 --> 00:58:39,620
But I think the biggest thing in my mind is getting people with disabilities to believe

671
00:58:39,620 --> 00:58:45,100
that they belong in a gym. Yeah. Yeah. That's, and I'm not conceited enough to say that like,

672
00:58:45,100 --> 00:58:50,540
Oh, my model is the model that I need everyone to abide by. It's just, it's just, it's just

673
00:58:50,540 --> 00:58:54,620
a model. It's what I know. It's what we've done. And it's evolved over time. What it

674
00:58:54,620 --> 00:58:59,860
was five years ago, probably shouldn't be, um, what I'm teaching now. And so that's why

675
00:58:59,860 --> 00:59:04,740
the continual evolution of it's important. Yeah. But I think what you're doing is with

676
00:59:04,740 --> 00:59:10,180
this course is awesome. And I think there are, uh, you're, you're at least opening up

677
00:59:10,180 --> 00:59:14,500
minds and I think you might want to measure more of those things because you can measure

678
00:59:14,500 --> 00:59:21,340
that you can look at how did my course change the way this person approaches fitness with

679
00:59:21,340 --> 00:59:25,300
different populations. Yeah. The marketing piece you mentioned is tough because sometimes

680
00:59:25,300 --> 00:59:29,980
it feels like you're almost exploiting someone's disability. Um, like you need to choose a

681
00:59:29,980 --> 00:59:35,440
physical one. I have clients with autism, intellectual disabilities that get shared

682
00:59:35,440 --> 00:59:40,140
on our feeds and you would never know, um, that they have that unless I'm like, Oh, look

683
00:59:40,140 --> 00:59:44,980
at this autistic athlete. Um, I'm never going to put that in a caption. So it's like how,

684
00:59:44,980 --> 00:59:50,740
I guess, how can you market to the population without exploiting or overemphasizing the

685
00:59:50,740 --> 00:59:56,000
fact that you're inclusive, uh, is a challenge as well. Well, I think it's a challenge especially

686
00:59:56,000 --> 01:00:00,900
because I think you have to, that's when you go back to your membership and you ask them

687
01:00:00,900 --> 01:00:07,220
what, what does exploiting look like to you? Uh, because again, some people like me want

688
01:00:07,220 --> 01:00:14,260
to promote what you're doing. You know, we want to say this guy gets it. He is working

689
01:00:14,260 --> 01:00:20,620
really hard to make sure everybody is included in fitness and everybody should have access.

690
01:00:20,620 --> 01:00:27,220
That's a, that's a, an, an, you know, is that a right to some, is that a, you know, inherent

691
01:00:27,220 --> 01:00:33,220
right that we all have to be able to move? Um, anyway, uh, I don't want to get into that.

692
01:00:33,220 --> 01:00:39,180
I'm not a Greek philosopher, but, um, yeah, I think it's, we still haven't discovered,

693
01:00:39,180 --> 01:00:44,820
this is still an issue, right? Nobody has discovered the exact formula of how to get,

694
01:00:44,820 --> 01:00:48,700
you know, for every one person you see out in the community with a disability, there's,

695
01:00:48,700 --> 01:00:53,660
there's 10 at home not going anywhere because they don't think they can or they can't for

696
01:00:53,660 --> 01:01:00,420
whatever reason. So it's collectively a societal issue. You know, I always think about disability

697
01:01:00,420 --> 01:01:07,620
as the last form of, of, of diversity that we have yet to fully embrace. Um, and it's

698
01:01:07,620 --> 01:01:12,500
that final frontier of, you know, people don't think about disability as diversity, but,

699
01:01:12,500 --> 01:01:19,180
but it is, and it's the largest, you know, one in, one in what 26% of the population,

700
01:01:19,180 --> 01:01:23,500
anywhere from 20 to 26, depending on what data set you're looking at, um, lives with

701
01:01:23,500 --> 01:01:29,480
a disability. That's a large part of our population in the U S. So there should be lots of opportunity.

702
01:01:29,480 --> 01:01:34,540
It's just people have decided that we aren't, we are not marketable. Yeah. Yeah. And I know

703
01:01:34,540 --> 01:01:40,140
in like, even in Jenny's paper, um, he cites a study from, um, that, that just showed that

704
01:01:40,140 --> 01:01:44,560
like only half of physicians would welcome people with disabilities into their clinics

705
01:01:44,560 --> 01:01:49,860
and like 80% report that they assume that someone with a disability has a worse life.

706
01:01:49,860 --> 01:01:57,220
And, uh, those, those statistics are among the most educated of the people in the world.

707
01:01:57,220 --> 01:02:04,220
So like, how can we expect those that haven't even gone to those lanes of education to have

708
01:02:04,220 --> 01:02:08,560
high expectations for people with disabilities? Um, kind of what you had mentioned earlier

709
01:02:08,560 --> 01:02:13,460
about rec, like you going out and skiing alongside people without and showing them and kind of,

710
01:02:13,460 --> 01:02:18,280
uh, facilitating those conversations seems to be a really important way to do it. But

711
01:02:18,280 --> 01:02:23,460
sometimes the, the challenge in front of us seems overwhelming in terms of the scope.

712
01:02:23,460 --> 01:02:29,100
Um, yeah, but yeah. And I, like, I tell, I tell, um, I, I get to work with these really

713
01:02:29,100 --> 01:02:34,700
wonderful young people, these students and everybody wants to change the world. And I

714
01:02:34,700 --> 01:02:39,940
love that, but you can only change your little, you have to start in your corner and you have

715
01:02:39,940 --> 01:02:46,180
to start in your little space. You can't change everything. Uh, you have to be a part of that,

716
01:02:46,180 --> 01:02:51,300
right? A part of the push for change. And, um, you know, you've been leading, you've

717
01:02:51,300 --> 01:02:56,660
been leading the fight for a long time and it's so great that, that you are being rewarded

718
01:02:56,660 --> 01:03:01,220
for that. You know, so many people, they try and maybe it doesn't work and then they get

719
01:03:01,220 --> 01:03:07,020
frustrated and just kind of stop. And I know, um, that, that can make sense to people. Like

720
01:03:07,020 --> 01:03:11,580
you people just don't want this. And it's like, no, us people do want it. We just need

721
01:03:11,580 --> 01:03:17,740
to be, we've never been told that we can. And it's only people like me who have had

722
01:03:17,740 --> 01:03:23,140
so much privilege and so much opportunity to know that I can do this. So I go out and

723
01:03:23,140 --> 01:03:28,980
seek it, but that's because of, of all the things I can do that I have access to somebody

724
01:03:28,980 --> 01:03:34,780
else who never knew this was available. Uh, it has a, has a much more challenging time

725
01:03:34,780 --> 01:03:39,340
of figuring out what it, what it can look like in their lives. So I'm not, I think

726
01:03:39,340 --> 01:03:46,380
that I might be biased a little bit by my experiences of, of course you can, but, but

727
01:03:46,380 --> 01:03:53,380
not everybody can. Uh, but once they, once you do access it, it's like why you always

728
01:03:53,380 --> 01:03:56,900
hear that. I always hear this from, from people with disabilities, like, I don't know why

729
01:03:56,900 --> 01:04:00,540
I didn't do this sooner. I don't know why, you know, once you get them actually doing

730
01:04:00,540 --> 01:04:05,540
it and you know, some getting somebody on a sailboat for the first time or getting somebody

731
01:04:05,540 --> 01:04:12,220
skiing for the first time. Like I love that because you get to see that like mind blown,

732
01:04:12,220 --> 01:04:18,340
like, Oh my God, I didn't realize I could do this. I can do this. Oh my God. And then

733
01:04:18,340 --> 01:04:22,980
families around them, we can do this as a family. We can go skiing. Like I didn't know

734
01:04:22,980 --> 01:04:27,460
we could do this, you know, and the possibilities, that's what health promotion is, right? It's

735
01:04:27,460 --> 01:04:32,340
it's being open. It's possibility and the opportunities of possibilities. And yeah.

736
01:04:32,340 --> 01:04:37,780
Yeah. When, when Dennis was with us senior year and he was doing his initial practicum

737
01:04:37,780 --> 01:04:42,500
with us through UMass Lowell for his exercise science degree. And when he first told me

738
01:04:42,500 --> 01:04:46,860
he was going into OT, I was like, Oh, that was interesting. Most of the most of our practicum

739
01:04:46,860 --> 01:04:51,740
students go into physical therapy. Why do you, why do you think some people go into

740
01:04:51,740 --> 01:04:58,260
PT versus OT and what are the different environments and what are the different goals, I guess?

741
01:04:58,260 --> 01:05:05,340
Yeah, you know, when I was, when I didn't know about OT when I was all PT minded, because

742
01:05:05,340 --> 01:05:10,500
it's interesting and it, I'm not going to get into the politics of it because it's long

743
01:05:10,500 --> 01:05:16,380
and extended. But, you know, back when I was in rehab, there was always this battle between

744
01:05:16,380 --> 01:05:22,100
what PTs did and what OTs did and you can't cross over and you can't do this. You can,

745
01:05:22,100 --> 01:05:27,740
you know, drinking water is an OT activity, but walking to the water fountain is a PT

746
01:05:27,740 --> 01:05:31,780
activity and like all this breaking up of body parts and people and saying, well, this

747
01:05:31,780 --> 01:05:37,780
goes here and that goes there. And I'm like, well, who puts it all together? So I think

748
01:05:37,780 --> 01:05:45,160
what physical therapists do is work on somebody's physical abilities. And what occupational

749
01:05:45,160 --> 01:05:51,860
therapists tend to do is look at what activities are meaningful to you or what are the activities

750
01:05:51,860 --> 01:05:55,760
of daily living that you have to do. Like you have to, you know, most people get dressed

751
01:05:55,760 --> 01:05:59,440
in the morning or get dressed at some point during the day. Not everybody gets dressed

752
01:05:59,440 --> 01:06:05,900
in a suit, but you put on some kind of clothing or, you know, eating. Can you eat, you know,

753
01:06:05,900 --> 01:06:11,740
all those things. So OTs sort of are more in that physical therapists may help with

754
01:06:11,740 --> 01:06:18,460
the strength and the range of motion. It seems like in this world, we have, it's sort of

755
01:06:18,460 --> 01:06:27,020
separated and like PTs take the, from the, you know, waist down and OTs take upper extremities,

756
01:06:27,020 --> 01:06:32,340
you know, I don't even think that's necessarily the case, but that's sort of where they have

757
01:06:32,340 --> 01:06:38,660
divided themselves. And so you can see OTs clinic, you know, clinicians working in, you

758
01:06:38,660 --> 01:06:43,260
know, hand therapists like what Dennis likes, you know, some people really love working

759
01:06:43,260 --> 01:06:49,400
with hands and wrists and elbows and shoulders. And OTs can do that clinically, or they can

760
01:06:49,400 --> 01:06:57,500
work in, you know, they can work in mental health and they can work with kids with ASD

761
01:06:57,500 --> 01:07:01,380
and working in sensory processing. They can do all kinds of other things sort of that

762
01:07:01,380 --> 01:07:09,180
help you do what you want to do. So I kind of look at basically should, should be working

763
01:07:09,180 --> 01:07:14,100
in conjunction, should be working with, with each other. Ideally, when they work together

764
01:07:14,100 --> 01:07:19,160
with physical therapists, you can really work on the thing, getting that person strong and

765
01:07:19,160 --> 01:07:24,540
capable to do what they want to do. So I kind of see those as the differences. I'm sure

766
01:07:24,540 --> 01:07:27,900
there's a lot of people listening who would say, well, I would say this and I would say

767
01:07:27,900 --> 01:07:32,860
that. And, you know, I'm sure I'm missing some things, but you know, fine motor skills

768
01:07:32,860 --> 01:07:39,420
with your hand and things like that. But like, like I had carpal tunnel issues, obviously,

769
01:07:39,420 --> 01:07:45,920
because I've had the use of my, my one functional hand for 20, 34 years. So obviously something's

770
01:07:45,920 --> 01:07:52,700
going to happen. So I had surgery on it and I saw an OT because I wanted to see a hand

771
01:07:52,700 --> 01:08:00,260
therapist so that they could get my wrist and hand functioning again. After that, I

772
01:08:00,260 --> 01:08:06,380
saw, I went back to my trainer and worked with him. Now some physical therapists work

773
01:08:06,380 --> 01:08:13,620
in that space too, but I just, that's the path I took with, with rehabbing from my wrist.

774
01:08:13,620 --> 01:08:19,300
I just, I tend to try to avoid clinical medical experiences as much as possible because I

775
01:08:19,300 --> 01:08:23,420
don't like being medicalized and I don't like being limited and I don't like entering

776
01:08:23,420 --> 01:08:28,940
into spaces that are not designed for me. And it's fascinating to see the number of

777
01:08:28,940 --> 01:08:35,440
physician offices and practices that are not accessible. Don't have a bathroom I can use.

778
01:08:35,440 --> 01:08:41,960
Don't have a table I can use. Don't have pretty much anything that, that I can use

779
01:08:41,960 --> 01:08:48,940
in my recovery. Is there a database of what offices and stuff do? How do you find the

780
01:08:48,940 --> 01:08:54,700
appropriate ones? Well, an error, unfortunately, or like I'll, I literally will drive by places.

781
01:08:54,700 --> 01:08:59,220
Like does that look, I can get in, you know, because I don't want to have that experience

782
01:08:59,220 --> 01:09:03,220
of being late for an appointment because I couldn't get in. That has happened to me many

783
01:09:03,220 --> 01:09:08,420
times and it's very frustrating and you end up getting kicked out of the practice if you

784
01:09:08,420 --> 01:09:13,940
don't show up enough times. So I tend, I'm different maybe in a lot of ways. Like I tend

785
01:09:13,940 --> 01:09:19,140
to try to avoid as many medical interactions as I, as I guess I can. And I prefer to work

786
01:09:19,140 --> 01:09:24,960
with regular humans as much as possible. Because a physician, yes, they're educated, highly

787
01:09:24,960 --> 01:09:32,440
educated, but highly educated in one thing. Right. And that is how a standard body works.

788
01:09:32,440 --> 01:09:37,180
That's what they learn. Yeah, that stuff. I had a high school student come to the gym

789
01:09:37,180 --> 01:09:45,700
last week and I think this year she was introduced to like a unified PE class and really grasped

790
01:09:45,700 --> 01:09:49,140
it and really loved it. And that was actually a similar experience to kind of how I got

791
01:09:49,140 --> 01:09:53,100
into this in the first place with unified sports. But she was asking like, oh, how do

792
01:09:53,100 --> 01:09:56,860
I, I think she wants to pursue health sciences next year at the university where she's playing

793
01:09:56,860 --> 01:10:01,980
lacrosse and she's like, should I go to PT? Should I go to OT? Should I become an athletic

794
01:10:01,980 --> 01:10:07,420
trainer? She's like, what'd you do to get here? And I'm like, I'm like, well, I studied special

795
01:10:07,420 --> 01:10:13,900
ed and then I went into this, this and that. And there's really no one path. And I found

796
01:10:13,900 --> 01:10:19,460
myself, I found myself struggling to guide her, not that it was my responsibility to

797
01:10:19,460 --> 01:10:24,420
guide her, but offer any suggestions that I felt had any substance in terms of like

798
01:10:24,420 --> 01:10:28,740
what direction she should go and outside of accumulate as many experiences as possible.

799
01:10:28,740 --> 01:10:33,100
I think that's the way to do it. You know, I initially where I went to university of

800
01:10:33,100 --> 01:10:37,540
Virginia, as you said, and they didn't have a PT program there. And I didn't know I wanted

801
01:10:37,540 --> 01:10:42,140
to be a physical therapist when I entered school. And I thought I wanted, I don't know,

802
01:10:42,140 --> 01:10:48,140
I was like some 18 year old. I just wanted to go to Virginia and swim and medicine. I

803
01:10:48,140 --> 01:10:53,220
knew I wanted to learn about the body. I just didn't know what, cause I was 18. And I've,

804
01:10:53,220 --> 01:10:57,580
I then was like, you know, being an app, cause I, you know, inherently if you're an athlete,

805
01:10:57,580 --> 01:11:02,380
you end up in the training room. If you're doing it. I mean, back then, I think things

806
01:11:02,380 --> 01:11:07,340
are so different now, Brendan, than when I was a student athlete. Thank God they're

807
01:11:07,340 --> 01:11:12,660
much better, much, much, much, much, much, much better. But so I would go to the training

808
01:11:12,660 --> 01:11:17,020
room. I'm like, well, this is kind of cool. I wonder if, if I, if I want to be this and

809
01:11:17,020 --> 01:11:22,820
I could, I could take classes in athletic training. It was an option at that school.

810
01:11:22,820 --> 01:11:29,580
And I was, I did my internships. I was in there taping ankles and, and I was, it was

811
01:11:29,580 --> 01:11:34,700
a very male dominated world at the time. And a lot of, as a woman, even the athletes were

812
01:11:34,700 --> 01:11:39,660
like, you can't take my, there's no way I don't want you taping my ankle. Well, why?

813
01:11:39,660 --> 01:11:47,100
Cause cause you're a woman. Cause you could say that then in 1988. And I'd be like, really?

814
01:11:47,100 --> 01:11:51,780
Okay. And then I'd take the shit out of their ankle and excuse my language. And they would

815
01:11:51,780 --> 01:11:56,820
take the heck out of their ankle. And then they'd be like, Oh, you're stronger than

816
01:11:56,820 --> 01:12:02,260
you look. And they're like, yeah, don't mess with me. But, but I, I then, back then it

817
01:12:02,260 --> 01:12:07,060
was very male dominated and I was like, I really liked the work. I don't like the environment.

818
01:12:07,060 --> 01:12:11,540
So I needed to experience that. And then I went to that PT, you know, worked at the hospital

819
01:12:11,540 --> 01:12:15,540
and I was like, Ooh, I really like this, you know, and I had never had the opportunity

820
01:12:15,540 --> 01:12:20,180
work to work in a community based setting. Cause that would have been like everything

821
01:12:20,180 --> 01:12:24,460
for me. Cause I'm a big community based person, as you can tell. And cause that's where we

822
01:12:24,460 --> 01:12:32,100
should be out in the community. What do you think needs to be done to make the fitness

823
01:12:32,100 --> 01:12:37,940
industry or recreation more accessible? I think more classes like what you're doing.

824
01:12:37,940 --> 01:12:42,940
I think the continuous, like, I think there's a good movement ahead and you know, I'm not

825
01:12:42,940 --> 01:12:47,660
a social media person, but I think there's a, there's a lot. That's one of the things,

826
01:12:47,660 --> 01:12:52,140
like you said, your friend learned everything that they did about spinal cord injury from

827
01:12:52,140 --> 01:12:56,580
YouTube videos of people living with spinal cord injury, talking about what they do. I

828
01:12:56,580 --> 01:12:59,860
think you can get a lot of information. I think it's dangerous cause there can be some

829
01:12:59,860 --> 01:13:03,540
mis- misinformation out there, but I don't know if it's any more dangerous than in a

830
01:13:03,540 --> 01:13:10,420
clinical environment. Um, so I think just the more people we have talking about this

831
01:13:10,420 --> 01:13:17,140
stuff, uh, and doing it, the more it's going to get the more people's expectations are

832
01:13:17,140 --> 01:13:22,460
going to sort of change, you know, um, it to, uh, you know, you go into your gym, I'm

833
01:13:22,460 --> 01:13:26,980
sure, I'm sure the people that initially when you have, you know, all your able-bodied members

834
01:13:26,980 --> 01:13:31,980
come in, they're like, wow, look at all this. At first they must be like, whoa, cause that's

835
01:13:31,980 --> 01:13:35,980
kind of how able-bodied people react if they have never been exposed to this. That's not

836
01:13:35,980 --> 01:13:43,540
their fault. It's just the way our society has, has, uh, set everyone up. Um, and the

837
01:13:43,540 --> 01:13:48,140
after time, I'm sure in your gym, it's like, oh yeah, it's just these people. And I see

838
01:13:48,140 --> 01:13:52,480
them as people and not as anything special. And you're okay, you're getting stronger today

839
01:13:52,480 --> 01:13:57,020
or whatever, you know, and then you get more of a us and us world, not an us in them world.

840
01:13:57,020 --> 01:14:03,420
And I think the more we continue pushing the us and us world, especially in adaptive sport

841
01:14:03,420 --> 01:14:09,820
and fitness, the more and not make it this specialty of, well, you have to have a special

842
01:14:09,820 --> 01:14:15,420
ed background, for example, like I don't even like the term special ed, like it's neither

843
01:14:15,420 --> 01:14:20,660
special. I wouldn't say, you know, you have special and you have gifted, which one in

844
01:14:20,660 --> 01:14:25,380
your world do you want to be right? The way we hire our guys, all of this. Um, but anyway,

845
01:14:25,380 --> 01:14:30,660
I've, I've detracted again from the original question, but, um, I think it's a slow process

846
01:14:30,660 --> 01:14:37,400
to change, to change minds. But I think once you do it, you create almost, um, little minions

847
01:14:37,400 --> 01:14:41,820
of people that are like, they are really passionate about this. I'm sure there are people that

848
01:14:41,820 --> 01:14:48,540
go through your class who are like, Oh my gosh, I had no idea this was all here. I'm

849
01:14:48,540 --> 01:14:53,020
so excited. And you might get some other people that are like, this is really helpful. I don't

850
01:14:53,020 --> 01:14:56,860
know if it's for me, you know, obviously you can't push everybody into that space, but

851
01:14:56,860 --> 01:15:01,740
you can at least expose. And so I think the most, the more exposure, the better. Yeah.

852
01:15:01,740 --> 01:15:05,540
The expectations is an important thing. And that's where I like sometimes feel like such

853
01:15:05,540 --> 01:15:13,220
a, like a pessimist and a curmudgeon, but like, I'm sometimes annoyed when I see people

854
01:15:13,220 --> 01:15:18,000
praising the rudimentary tasks you mentioned, inspiration porn, it's a topic that we've

855
01:15:18,000 --> 01:15:23,540
talked about ad nauseam on the podcast with the various guests, but like, uh, that stuff

856
01:15:23,540 --> 01:15:28,820
does, I think it does more harm than good. Um, when I see, like, when I see someone with

857
01:15:28,820 --> 01:15:33,780
down syndrome and a trainer posts a video of them performing really bad pushups or really

858
01:15:33,780 --> 01:15:39,380
bad squats when the client would be perfectly capable of doing, um, better with some proper

859
01:15:39,380 --> 01:15:43,660
instruction. And then everyone in the comments is like, wow, this is so great. Uh, you're

860
01:15:43,660 --> 01:15:48,700
incredible referencing the trainer, not even referencing the athlete that stuff. And that's

861
01:15:48,700 --> 01:15:53,220
always been so uncomfortable for me. Every time I, every time I post something and the

862
01:15:53,220 --> 01:15:58,340
comments get directed at me instead of the athlete. Uh, it's so great that you do this

863
01:15:58,340 --> 01:16:02,220
for the kids. It's like, no, that's, that's, that's not what I'm trying to show. So that

864
01:16:02,220 --> 01:16:08,780
kind of goes back to the challenges of marketing and exploitation and stuff. And, um, yeah,

865
01:16:08,780 --> 01:16:14,660
I think it's never ill intentioned when people, uh, when people say like, oh, that's great.

866
01:16:14,660 --> 01:16:19,180
Like, it's so awesome that you're doing that, but it's, it's tough cause I know it means

867
01:16:19,180 --> 01:16:24,600
that we're stuck in the certain level of expectation. I get equally as frustrated, Brendan. Maybe

868
01:16:24,600 --> 01:16:32,020
that's why we get along so well. But, but I, I think that it can drive you. I believe

869
01:16:32,020 --> 01:16:36,060
I've had an up and down space in all of that, you know, of do I want to be a part of this?

870
01:16:36,060 --> 01:16:40,100
Do I not, you know, I, I, I made a decision a lot. Oh, let's see. It was, it was when

871
01:16:40,100 --> 01:16:44,860
I went to graduate school, when I went to graduate school, I didn't want to, you know,

872
01:16:44,860 --> 01:16:50,180
I was, I had been injured for like, I'd had my spinal cord. I'm not injured anymore. I

873
01:16:50,180 --> 01:16:55,220
need to be clear about that. I live with something called a spinal cord injury. I'm not injured,

874
01:16:55,220 --> 01:16:59,780
but just because I, just because I am one doesn't mean I want to be in this world. So

875
01:16:59,780 --> 01:17:06,020
I definitely had a, a moment with myself where I was like, do I want to continue working

876
01:17:06,020 --> 01:17:12,300
in disability or do I want to work outside of that? And my, my thesis project was developing

877
01:17:12,300 --> 01:17:19,380
a bicycle safety video for, for middle school age kids on wearing helmets. It was called

878
01:17:19,380 --> 01:17:23,540
helmet in a jar and or jello in a jar. That's right. I named it jello in a jar and it was

879
01:17:23,540 --> 01:17:29,620
used by the national safe kids campaign, which is this big unintentional injury prevention

880
01:17:29,620 --> 01:17:33,740
organization, childhood injury prevention organization. And I thought that's what I

881
01:17:33,740 --> 01:17:38,380
wanted to do was, cause I was, I bought into all this, like, you don't want to get, you

882
01:17:38,380 --> 01:17:42,380
don't want to be at, have a disability. So this is, you know, obviously bicycle safety

883
01:17:42,380 --> 01:17:47,300
matters. I'm alive because of a helmet. So I believe strongly in helmets. And anyway,

884
01:17:47,300 --> 01:17:53,820
I did that, but it wasn't as satisfying as when I, you know, one of the other projects

885
01:17:53,820 --> 01:17:57,900
I did was I developed an entire health curriculum for people with spinal cord injuries. This

886
01:17:57,900 --> 01:18:02,620
was in 1993. There wasn't anything like that. Nobody was talking about health promotion

887
01:18:02,620 --> 01:18:09,700
and disability. So I didn't have anybody to mentor me through the next phase of what that

888
01:18:09,700 --> 01:18:15,500
could look like. So I had to take on, um, and I think in the end, now that I think about

889
01:18:15,500 --> 01:18:24,020
it, it's because of academic ableism and nobody saw my, what I wanted to do as valuable because

890
01:18:24,020 --> 01:18:28,020
nobody was talking about healthy disabled people. They were just talking about preventing

891
01:18:28,020 --> 01:18:33,660
disability. Um, and I was more like, well, we're not going to prevent us, you know, eugenics

892
01:18:33,660 --> 01:18:37,460
didn't work. It's never going to work. So what do we do with all these people that are

893
01:18:37,460 --> 01:18:41,580
here and can't we make them, can't they become healthier? Of course they can. But there was

894
01:18:41,580 --> 01:18:48,860
nobody that was there to support more academic pursuit. So I ended up going into nonprofit

895
01:18:48,860 --> 01:18:53,380
and going in this, like, I do want to work with disability. So it was an evolution for

896
01:18:53,380 --> 01:19:00,460
me as somebody living with disability to decide, is this the world I want to be in? And it

897
01:19:00,460 --> 01:19:08,340
was, it was because I didn't want that, that you're amazing. You're amazing because you

898
01:19:08,340 --> 01:19:12,900
showed up here. And I'm like, I shouldn't be amazing because I showed up. It shouldn't

899
01:19:12,900 --> 01:19:19,380
be amazing, Brendan, that, that I can teach college. It shouldn't be that, that students

900
01:19:19,380 --> 01:19:24,340
have never been taught by somebody. It shouldn't be that, that you are the only access to,

901
01:19:24,340 --> 01:19:30,220
um, adaptive phys ed education for people, you know, it's just the way it is right now.

902
01:19:30,220 --> 01:19:34,940
And these are the things we have to trust that as we keep moving forward, um, this is

903
01:19:34,940 --> 01:19:39,980
going to become a bigger movement. And it has, because I can tell you when I started,

904
01:19:39,980 --> 01:19:45,820
this wasn't even an option, what you're doing wasn't even an option. And now it's becoming

905
01:19:45,820 --> 01:19:52,580
something. And I just feel like time ticks and everybody has their own, um, concept of

906
01:19:52,580 --> 01:19:57,020
time. But I believe we have to trust that moving forward, as long as you keep the ball

907
01:19:57,020 --> 01:20:00,860
moving forward, it's going to keep moving forward. And it may not look like what you

908
01:20:00,860 --> 01:20:06,460
want it to look like at the end, but it may look like something you never expected also

909
01:20:06,460 --> 01:20:09,060
at the end. And I don't even know what the end looks like, by the way, I hope we never

910
01:20:09,060 --> 01:20:13,540
get to the end. Well, I think what you're doing is amazing because you've, I mean, you

911
01:20:13,540 --> 01:20:18,980
built the curriculum similar to kind of what I aspire to do. You've educated, same thing,

912
01:20:18,980 --> 01:20:23,940
what I aspire to do. And, uh, I never got the opportunity to go into higher ed. I shouldn't

913
01:20:23,940 --> 01:20:28,260
say I never got the opportunity. I chose, I chose not to, because at the time there

914
01:20:28,260 --> 01:20:32,700
wasn't really any incentive for me to have a master's degree in the private sector. You

915
01:20:32,700 --> 01:20:37,360
kind of dictate what you want. And I, I'm not even sure if there would have been an

916
01:20:37,360 --> 01:20:42,500
adaptive exercise science masters I could have even really pursued. So it was kind of

917
01:20:42,500 --> 01:20:48,460
up to me to read as much as I could, kind of like the self guided education that I had

918
01:20:48,460 --> 01:20:54,840
for the first few years. And I think it was, it was encouraged by my being terrified of

919
01:20:54,840 --> 01:20:59,580
not having an answer for someone. And I think that that was a motivation that was really

920
01:20:59,580 --> 01:21:05,380
strong. And I think it really led to a lot of my learning was just this concern that

921
01:21:05,380 --> 01:21:10,700
I wasn't going to be able to help whoever came in through the door. So, um, yeah, like

922
01:21:10,700 --> 01:21:14,340
I think I say in the course that you're not expected to have all the answers, but you

923
01:21:14,340 --> 01:21:18,740
are expected to care enough to try to find the solutions. And I think if, um, like maybe

924
01:21:18,740 --> 01:21:24,220
just lowering that fear level for fitness professionals and giving them permission,

925
01:21:24,220 --> 01:21:29,300
not to be negligent, but to take in this whole population that's currently not served.

926
01:21:29,300 --> 01:21:34,940
Right. And you can start, maybe you don't have, maybe you don't have access for wheelchair

927
01:21:34,940 --> 01:21:38,620
users, but maybe that's something you work toward, but maybe you do have access for people

928
01:21:38,620 --> 01:21:44,060
with limb loss, or maybe you do have access to, uh, the myriad and large population of

929
01:21:44,060 --> 01:21:48,940
people that you don't, that, uh, that we in the disability community think of as hidden

930
01:21:48,940 --> 01:21:54,900
or, um, invisible disability, you know, though, though that pop, those populations of people

931
01:21:54,900 --> 01:21:59,940
need fitness just as much as everybody else. And you're not going to necessarily find them

932
01:21:59,940 --> 01:22:05,860
by saying, looking for people with MS who haven't yet, I don't have to use a wheelchair

933
01:22:05,860 --> 01:22:09,060
yet. You know, obviously you're never going to reach out to people like that, but you

934
01:22:09,060 --> 01:22:15,580
can, you can, um, working with the clients you already have, I think you can talk to

935
01:22:15,580 --> 01:22:20,220
them about what got them there, what they think would be a good way to market what you

936
01:22:20,220 --> 01:22:24,940
do. And, and you don't have to use all those ideas, but why not take the ideas, like I

937
01:22:24,940 --> 01:22:30,380
said, of this diversity thing, like use it as a superpower. Like how would you promote

938
01:22:30,380 --> 01:22:34,340
this? Um, I think some, you be, I think it's always surprising to hear that some people

939
01:22:34,340 --> 01:22:38,140
have really good ideas. They just have never been asked.

940
01:22:38,140 --> 01:22:42,240
I think that's a great way to wrap it up as that kind of, I feel like that like summarizes

941
01:22:42,240 --> 01:22:47,100
a lot of, of, uh, what we talked about, whether it's medical professionals, interactions with

942
01:22:47,100 --> 01:22:51,220
people with disabilities or fitness professionals role in making the industry more inclusive.

943
01:22:51,220 --> 01:22:56,940
Um, Sarah was a, an honor to talk to you. I went for an hour and a half and probably

944
01:22:56,940 --> 01:23:00,900
could have gone for another hour easily. Uh, but I don't want to take up too much of your

945
01:23:00,900 --> 01:23:04,860
day. So thank you. Uh, thank you for doing this. And I really look forward to sharing

946
01:23:04,860 --> 01:23:09,700
this episode. Thank you, Brendan. I, I, I deeply, uh, appreciate

947
01:23:09,700 --> 01:23:14,500
our relationship and our, uh, you know, we are, we will continue to work together. I

948
01:23:14,500 --> 01:23:19,820
know. And it's because, uh, because of your, your leadership and your energy. And I value

949
01:23:19,820 --> 01:23:23,500
that highly. So thank you for having me. It's been an honor to be here. I hope I gave you

950
01:23:23,500 --> 01:23:29,700
something. Hope I gave you something worthwhile. Thank you for listening to the adapt X podcast.

951
01:23:29,700 --> 01:23:33,620
Our effort to amplify the ideas of our guests and create more inclusive and accessible industries

952
01:23:33,620 --> 01:23:38,220
is futile unless these episodes reach a larger audience. If you enjoyed our discussion today,

953
01:23:38,220 --> 01:23:42,180
please leave us a rating or review on whichever platform you use. And if you would like to

954
01:23:42,180 --> 01:23:45,580
learn more about adapt X, the course that we teach to health and fitness professionals

955
01:23:45,580 --> 01:23:49,540
and the projects that our organization is working on, you can subscribe to our newsletter

956
01:23:49,540 --> 01:24:00,260
through our website, www.adaptex.org until next Monday.