Welcome to the ADAPTX podcast where we have conversations with individuals who are building
accessible businesses, advocating for inclusion, or excelling in adaptive sports.
Our intention is never to speak on behalf of those with disabilities, but provide them
with a platform to share their ideas and insights to help us make the world more accessible.
Today we are joined by Sarah Skeels.
Sarah has a BS in exercise physiology from the University of Virginia, where she focused
on adaptive exercise and a master's degree in public health from George Washington University.
Sarah is a researcher, OT faculty at Tufts University, and senior teaching associate
in the School of Public Health at Brown University.
Sarah is heavily involved as both an athlete, coach, and board member in various adaptive
sports organizations.
Sarah, thank you for joining us today.
Oh, thanks Brendan.
It's awesome to be here.
We first met about three years ago when one of my favorite interns of all time, shout
out Dennis Peary, had you as an advisor for his doctoral capstone project at Tufts.
This project revolved around making recreation, lawn games specifically, more accessible for
people with cerebral palsy.
I really enjoyed every meeting as we had, and it gave me the opportunity to learn from
you and I'm glad we've stayed in touch over the years.
Yeah, me too.
I'm really happy.
You've been the driving force in this, staying connected, and I appreciate it.
Yeah, that's a very kind way of saying I continue to pester you over the years.
You were a Division I swimmer at UVA studying exercise phys.
I read that you had a focus on adaptive populations.
Yes, I did.
What encouraged you to do so because this was before your SEI?
Yes, it was way before all of that.
I was young and I was introduced to disability pretty early on in my life.
I was in a Girl Scout group a long, long time ago and we had a person in our troop who lived
with a disability.
At the time when you're a little kid, you seem to think they don't know anything different
of anybody and a lot of people treated her differently.
I never understood that and I always hung out with her because she was a really nice
person and I helped her out.
She needed some help doing some things and I just sort of became more aware of the differences
that happen sometimes when someone with a disability shows up in a space that, especially
back then in the 70s, disability was really institutionalized at the time.
Parents were told to put their kids in institutions and we had a very, you know, it wasn't like
it is now, thankfully.
So I think I carried that with me into school and when I could take adaptive, I started
taking more adaptive fitness and adaptive, you know, just adaptive, everything I could
that was adaptive, that was labeled adaptive at the time and it just was something that
was really interesting to me because it's not just the basics, Brendan, it's applying.
This is what I love about working with disability.
It is unique.
It is not standard and so you have to know your stuff because then you have to apply
it to a non-standardized person and figure out how they're going to work, right, and
how this is going to work for them and I find that it's like a puzzle.
It's like organic chemistry, you know.
This puzzle you put together that can turn out to, that ends up in this empowered person
in the end if you're talking about adaptive sport and recreation.
Yeah, we talk about how it's always really important to have a strong foundation and
exercise physical strength and conditioning as a whole though so I guess it gives you
all those different puzzle pieces to assemble.
I think some people get into that space because they're interested in disability or they
want to be an advocate for disability but you also have to do your due diligence of
really knowing your stuff from an exercise science standpoint because that's what allows
you to kind of creatively apply it to these unique situations but I think working with
adaptive populations makes people better coaches for all populations and that's something we
try to espouse with our course.
Yeah, it really, you have to have really strong observation skills and really understand how
body systems work and I mean the body's fascinating and anyway, you know, I was exposed to disability
again as an undergraduate student when I decided to work as a physical therapy assistant at
the UVA Medical Center at the time.
It's now blown up into this huge thing.
At the time, it wasn't as big as it is but I was then exposed to other people, you know,
who are challenged in all these spaces and I was just like, why, why, you know, why,
why does it have to be so hard for you and it's not as hard for me?
I'm not talking about movement, I'm talking about access to the ability to move.
Yeah, absolutely.
What were your, exactly, at the time, did you have specific career goals like a specific
environment that you wanted to be in or industry that you wanted to be in?
I really wanted to go into rehab.
I wanted to be a physical therapist and I wanted to go into rehab.
Physical rehab is, you know, a challenge and I didn't get to do it as a clinician, I got
to do it as a patient so it's all kind of weird in my case but I think, you know, my
experience now isn't any, is probably more profound than it would have been if I had
just become a physical therapist and moved on in my life.
Ben, when just of one of many people, instead I have this really weird, this really weird
experience of life and I'm in it to win it so whatever.
That's a theme that I have heard from some of the other guests that we've had with SEIs,
almost talking about how their life is better after their industry, sorry, after their injury
and so you've kind of found that to be the same, right?
It's given you more purpose and kind of a unique path.
Yeah, it's a unique, and I wouldn't say, you know, I don't know, you know, you don't know
what life is going to be on, you know, you only know your experience so I can guess what
could have happened and I don't know the paths I would have taken.
I can only guess about that.
I know what I've done in my life and I think what my injury brought me is this idea that,
you know, there's one life we have here.
There's one.
This is not a dress rehearsal.
This is for real and wanting to live it as much as possible became what I wanted to do
and I don't know if I would have had that same verve and motivation had I not had a
traumatic experience that took away what I thought was me, you know, and then I had to
learn that there's a lot more to me than just my physical self and, you know, and then we
want to tie it back into physical activity and recreation and fitness.
You can't be your best self if you can't be there and I think, you know, like everybody
is an athlete at this point when you are a wheelchair user in this world, especially
in the snow, et cetera, you are an everyday athlete.
Whether you want to be or not to navigate the world as a wheelchair user, you have to
figure things out all the time.
Yeah, absolutely and we can talk a little bit about barriers to accessibility specifically
a little later on.
You were initially accepted into PT school and then that offer was rescinded because
of your injury.
Yes, it was.
What was that experience like and have you encountered a lot of ableism kind of in the
industry?
Yeah, so the industry, our world is ableist so we have to start with that and that understanding
and it's something that's slowly changing but we just live in this world right now where
physicality is highly valued and those of us who are physical but present ourselves
differently, i.e. maybe as in a wheelchair, maybe somebody using crutches and a prosthetic
limb, any of those spaces, you know, we all of a sudden can't.
The word can't is attached to us so quickly just at glance from somebody.
But I think my whole initial career trajectory or my hopeful path ended in a way that was
very upsetting to me, you know, to deny me to say to me, and this was back in 1990 before
the ADA was really a law and I was so caught up in rehabilitating myself that I really
I bought into it.
No, I can't be a physical therapist because all I was thinking about was all the things
that I had done or that I had seen being done in rehab and was like, how am I going to do
these things?
And you know, now looking back 30 some odd years later, I could have figured it out.
I would have been a very good clinician but that wasn't my path and I had to be open to
the fact that maybe, you know, up until that point, the world had worked for me.
You know, I have the right color skin.
I had the right, you know, I was very, you know, I was talented in a sport.
I was able to just access things all the time.
I had a lot of privilege and I didn't understand all that privilege and my spinal cord injury
certainly exposed me to what privilege means and what it doesn't mean.
And I think it was my first time to come up against that and we weren't using language
like that back in the 90s.
But I think that learning how to fit into a society that wasn't, didn't want me and
didn't value me and especially healthcare, which is about as most able as place you can
be unfortunately is in healthcare.
And I would say that that's just, it's just that because I think rehab is like you have
in medicine, it's all about trying to be as normal as you can as far as whatever this
normalized standard person is that you're this profile.
And I knew I was never going to get to that.
And so what I eventually did was realize I can live outside the lines.
Nobody has any, unfortunately, nobody has any expectations for me.
I have high expectations for me and I had to realize it all had to come from me because
I could just have given up.
I could have just stopped.
I could have said, you're right.
I can't because I can't because and this happens all day, every day for lots of people.
I can't because dot dot dot and that because dot dot dot is the thing.
And what does that really mean?
And I had to look into that and I'm not, I'm not suggesting that that's an excuse.
I'm just saying it was something I had to look more deeply into.
What does that mean?
And at the time I was in my twenties, I wasn't ready to give up.
I was ready to start and fight and push.
And so I think it was actually in the end, it really pulled out my my strong inner athlete
and and and helped me.
My my my inner athlete really helped me move through a lot of frustration and disappointment
and into a better space.
That reminds me of a paper from Alan Jette, who I know you're familiar with, called the
Paradox of Physical Therapy, where he talks about how like the physical therapy industry
is claiming to value diversity while also establishing these pre-established norms that
everyone is supposed to move towards.
And so that kind of opens up the debate.
Debate is probably too strong of a word, but between like the medical model versus a social
model of disability.
And while I do think it's essential to adopt the social model, that's the first module
that we introduce in the course that we teach to fitness professionals.
But I guess where do you think both kind of fall or what value do both the social model
and the medical model have in a highly medical field like physical therapy?
Yeah, you know, I just gave a I just gave a lecture to the Brown, the let's see, the
Warren Alpert, the Brown Medical School third year class, and it was about the medical and
the social model and what does it even mean?
They don't learn, you know, I think I think it's I don't know the exact so I want to
make sure the audience understands I don't have the exact number here, but less than
30%, I think of medical schools actually have a curriculum for disability.
And my guess is that's very similar in physical therapy as well.
I didn't go to PT school, I didn't go to medical school, but I've been involved in working
on the curriculum at the Brown Medical School to try to at least introduce disability a
little bit more to them.
And we this was what I was talking about was the medical model and the social model and
what does it mean in medicine?
And in my opinion, you know, someone with a disability has developed their status quo,
whatever that status quo is in their life.
So they initially, you know, if you acquire a disability like I did, you know, you have
the health management issues, you have to learn how to get through.
And you create your okay, this is how I manage my bladder.
And I know when I have a UTI or I know when I don't.
So I know when to seek medical care, because I am out of whack.
Where am I out of whack?
And so so when my symptoms flare up, and I want to get back to my status quo of my general
health, that's when medical model helps because we can figure out, you know, what are the
symptoms?
I go to an expert, a health care provider, who I will demand works with me not to me,
not at me, but with me to figure out what what is feasible for me, what is reasonable
for me, what can I do, you know, and then I go back to my social model, which is I'm
chugging along, this is my this is who I am, I'm moving along in my day, my disability
is very I don't want to say the word control is a dangerous word, in my opinion, but things
are are relatively managed, manageable, and I'm doing fine.
And in that case, I don't, I may not go to a physician or an OT or a PT to make anything
better.
I might be going to there or to cure me to cure something because that's not going to
happen.
I might like need to get get back to where I was, you know, or get a little bit stronger.
But those are my goals, not somebody else's goals for me.
Those are my things that I want to do.
So I see the social and medical model, all it can work together.
And and I don't think we need to attack the medical model.
But I think we need to be aware of when is it useful and when is it a barrier.
And unfortunately, it has that has to be driven by the person by the but when we enter healthcare,
we'll call patients, which I've never understood, because it does require significant patients
different spelling to be a patient.
But when we're out in the regular world, I'm not a patient.
I'm a human being, and I don't like being called a patient when I'm not in medical care.
So it's just it's when the medical model comes out into the real world and starts walking
around and putting a lot of unnecessary and I'm going to use the word barriers again,
or challenges in front of somebody for really no good reason, in my opinion, for no good
reason other than, well, you're different, and you're different in a way that isn't
valued. And so you therefore are inherently never going to get to what we want you to
get to we we being the medical world saying, well, physiologically, this is perfection,
and and or standard and you're not never going to get there because you have a spinal cord
injury and I said, and I say to that, well, then what's my standard as my as my person,
that's more my responsibility to figure out my standard is, and then when I'm outside
of my standard, that's when I can go seek assistance and if it has to be medical.
Yeah, no, absolutely. And towards that last point, like the benchmark or the standard.
I'm interested in that not from not from the lens of like, GMFCS, like cerebral palsy,
where like I have to label you at a certain level, but more so as a means of evaluating
the efficacy of like my training. So if we if we have a client with an SEI, what do I
need to measure? Where is progress shown? What can I expect? Is the goal completely
client driven? Like, it doesn't just depend on what you want to accomplish. Are there
things that you don't know that a medical professional should maybe know that they should
educate you on? Or are you always doing the educating? So I know you I know you helped
develop the sci fi. Can you maybe explain that or other assessment protocols?
Because I can connect us back to Alan Jette again, who's one of my most favorite humans
in the world. And I was so bummed when he retired, but he has a right to go raise, raise
vegetables and build beautiful wooden things and raise bees and make honey and all kinds
and chickens and all the things he's doing now. But so the sci fi has was developed to
as a different way of measuring ability, a capability, I'm going to change not ability,
capability in those with spinal cord injury. Before that, you had the the FIM and or you
had Asia. And those are two benchmarks, but they were created by able bodied people, able
body very in very high level researchers, but none of them living with disability, none
of them living with spinal cord injury. So how do you know what the experience is? How
do you really know what somebody's capability is? The way spinal cord injury is set up and
taught is, you know, you have your your spinal cord and you have where your lesion is and
and you know, you have a cervical lesion at C six, let's say. So then the thing everybody
said, well, then you're never going to do this instead of thinking about what can you
do with biceps and triceps? What can you do with that? What does that look like? And so
we set out to build to create a more sensitive measure of how a spinal cord injury might
impact somebody. And I went around and interviewed millions of people with question banks, prompt
banks and got their opinions, people with lived experience, their opinions on these
questions, you know, somebody who uses a power chair in the old measure, not the sci fi,
the old measure would say, well, if you use a power chair, you are inherently dependent.
And that's just not true. I know a lot of people who are extremely capable powered wheelchair
users, you know, it takes a lot of skill to use a power chair. A lot of able bodied people
don't understand that. You know, sip and puff is really hard. You got to remember what to
do when or you're putting holes in walls and running into people and all of that. So I
don't think it's equitable to apply the same scale and say, well, which is in the hierarchy
of the scale has always been if you can walk, you are now you have now reached the apex
of capability and yay you congratulations. And, and I was, I said to Alan, this isn't
right. You can't tell me that I'm not independent because I can't pop up a 10 foot curb. You
know, I'm being exaggerating here, but so I argued with him about this idea of walking
being not just Alan, the team of, of this idea of walking being the epitome of what
someone with this spinal cord injury, you know, the judgment of, of your abilities and
your capabilities. And, and he listened and he, you know, agreed. And that's why we developed
this measure the way we did, cause it was much more comprehensive of the, the lived
experience of those with spinal cord injury. Yeah. I think something like two and a half
billion people use assistive technology, whether it's glasses or wheelchairs. And I don't mean
to compare the two in any way, obviously, obviously it's drastically different, but
like, do those scales that devalue assistive technology, like that if you're using a manual
wheelchair, then you're lesser than that person who's using an exoskeleton to walk. And then
that person that uses a power chair is less than that person that uses a manual wheelchair.
Should walking always be the goal? No, I can't walk and I'm okay with it. I, I
let that go for some, for other people that might be their goal. I, I just think that
we have to be really caught, you know, sometimes you get this idea that because you're walking,
you're therefore have no problems and you have nothing. And that's the answer. It's
not the answer. I'm, you're a walking person, Brendan is, is your life perfectly perfect
because only because you can walk, you know? Yeah. Yeah. Cause I think I sometimes see
people invest so much of their time resources into that pursuit and obviously not diminishing
that effort in any way. I'm sure, I don't know how I would cope as someone who loves
running and stuff. If I was ever in that same situation, I would probably be really frustrated
that I lost the ability to run in a bipedal manner. But yeah, I think I see a lot of people
invest a lot of their time and energy into that pursuit of walking. And money, money,
lots of money. And you know, I, I'm sitting here talking to you and I have to, I want
to be clear with the audience that I'm, I'm speaking for myself. I'm not trying to speak
for the entire spinal cord injury population here. That is not who I am. I'm not representing,
you know, 200, you know, 400,000 people. But this idea of, of, you know, every, I was injured
in 1990 and every 10 years, something big comes like, you're going to walk again. We
did this with rats. And I'm like, if I was a rat right now, Brendan, I would be so set,
it would be great. But I don't want to be a rat. I'm a human. And, and, and I don't
know when we're going to get to this walking thing, but I can say that those of us with
a spinal cord injury still can work on our health. We still can be healthy. We still
can be contribute to the world. We still can engage. And, and I think to be told from the
get go, you can't engage because of who you now inherently are is the problem.
Yeah. Maybe, yeah. Maybe on the topic of that transition to sport and physical activity,
what was that experience like? Cause you went from being an elite athlete to then being
an elite, like not to bath late. Well, well you went to a different avenue that now you're,
you're in Paralympic sports. So do you think like that transition was harder? Do you think
an acquired injury has a different social emotional toll than a chronic one?
Yeah. I think the difference is now after having been out in the world as long as I
have as a disabled person with all the experiences I've had in the world, I think it, I think
for someone who has an acquired disability, you can check back into when you didn't have
a disability and you can check back into that. And the struggle I think that somebody with
an acquired disability has is who am I now? Who am I now? If I don't know how to, and
I've always, I've always thought that really the key to navigating disability is sort of
like thinking about how do I express myself now? I'm, I'm, I don't know. That was my challenge
is I was this very physical person. I define myself very physically. And then that was
at the time, the way I looked at it, it was, it was taken away. It was gone in a minute,
like gone. Like there was no like warning. There was no class ahead of time to say, okay,
well now you're going to be paralyzed and here's a wheelchair. And this is how you,
you know, none of that, you have to figure all that stuff out. And I think the journey
is very important, but the journey is, is, is, is, is just that it's a journey and you
have to figure that out of like, who am I and how am I going to express myself now in
this world? And so as an athlete, when I was, when I first was navigating rehabilitation,
I was in it. Like I was the best rehab patient you could be because I'm an athlete, right?
So tell me what to do. Tell me what to do. Tell me what to do. Always was pushing my
therapist, pushing, pushing, pushing because of where I wanted to go. And they worked with
me, which was really, which was really nice and helpful. And so I think my rehab experience
was, was not as hard as, as somebody who wasn't an athlete because I knew how to work my body.
And I wanted that because that felt like, that felt like me, like I was tapping into
me and then, you know, moving forward from that was okay. You know, I was an avid avid
cyclist. I was a runner. I was a swimmer. I was a triathlete. And so how do I get back
to some of that? And at the time, you know, adaptive sport was really, really in the,
not as big as it is now. And they had just developed hand cycles and I, you know, the
internet, there was no internet in 1990, 1991, two. And so I wrote, I wrote letters to all
these places I could find in the library that, that offered adaptive sport. Cause I, I was,
you know, I was like, where can I find a bike? I just wanted a bike, even though I had, I
didn't have the use of my right arm at the time, but I was like, I am going to find a
bike and I'm going to ride it because, you know, and so I got this bike, it was old and
heavy as a shadow, Mach three or something is a really old, heavy upright hand cycle.
But, and I could barely ride it, but I was doing it and it was really important to me
and that feeling of, of like tapping back into that inner, like inner athlete. I don't
know how to describe it right now, but tapping into that was really helpful for me and it
made me feel more like me. So then I thought, how am I going to find more of these experiences?
And what got me into sailing was just fun. But then what got me into competitive sailing
was that because of my whole makeup, I don't, I don't classify well in many, many sports,
but in sailing, I classify well, meaning I actually classify with, with, to be able to
compete on an, on an even level with everyone else. Whereas like if I was skiing, they don't
really have a category for me. If I'm swimming, they don't really have a category. So I, and
I'm not going to push, I'm not going to wheelchair racing isn't, isn't something I can do. So
it's not something I've ever really investigated much in other than give it a try and realize
I'm just going to go around in circles because of my, my brachial plexus injury. So sailing
was sort of that way for me to be competitive again. And you know, you're a runner, you
know, you may not be an Olympian, but you're a runner. Like that competitive feeling for
some people is really, really important to, to tap into because that might be inherently
a little bit of who they are. And you can be competitive in your career and you can
be competitive in other spaces, but there's really nothing like being to me, there's nothing
like really being competitive in a, in a, in a, in a sports arena. You know, in my case,
it's on the ocean or in a, in a lake or in a bay or wherever you can sail. But that's
kind of how I found how I eventually ended up in, in sailing. And I don't know, the
Paralympic thing was just in front of me. So why not? Why not give it a try? Yeah. Yeah,
absolutely. You had mentioned after your injury, maybe struggling to find resources. Obviously
it's a lot different now than it was for a variety of reasons, but you've been working
on a peer mentor program. I feel like the last time we talked maybe about a year ago,
you had mentioned that you were just starting something. Do you want to maybe explain a
little bit about what that is? Yeah. Yeah. Thank you for bringing that up. I wasn't expecting
that. So I really believe in the power of, of, of a peer. I really believe that we learn
best from other people's experiences. There's a lot of knowledge in that. There's a, there's
a, a, a disability studies theorist who is no longer on this planet named Tobin Siebers
and who talks about complex embodiment, which is looking at like how all humans, we have
many identities and you know, when you look at disability, which identities are present
in what spaces, you know, and what does that mean? And in that, in, in all of that inherently
is, is also the, the, the, um, the knowledge that you develop over time as a disabled person
figuring it's an art, it's, it's a way to live, um, you know, ingeniously because you're
constantly solving problems and you're constantly navigating spaces that weren't made for you.
And you get really good at it. And there's a lot of knowledge in that and that you want
to pass down. Uh, so, um, I, I've been a part of this research team looking at what if we
take peer mentors and in this case, these are peer mentors with spinal cord injury,
people who have been trained to mentor, and then we put them through more training of
how to be a health coach. Uh, so, uh, over and, and we've researched this, we're on our
third iteration now of looking at, uh, we, we took people with spinal cord injuries,
uh, they had to be, um, have been a peer mentor for five years and, uh, want to become a coach
and that we go through about 90, 90 some odd hours of training, uh, in motivational interviewing,
in, um, uh, trauma informed care in how, in, in health management, you know, all kinds
of spaces. And then we, uh, these people get certified in something called brief action
planning, which has a motivational interviewing, um, base. It's evidence, uh, it's evidence
based and is shown to work. It was developed for, uh, to be in the clinical, to be used
in a clinical setting of, you know, a way to engage with people and, um, help people,
help patients set goals that are, that they can actually achieve. Um, and so that's what,
and coaching can happen. The way we do this coaching is all through zoom so that you,
you eliminate the, having to travel somewhere, you eliminate so many barriers that are experienced
by those with spinal cord injury, those, uh, that, so I can meet with somebody and talk
to them like, like you and I are talking right now and you can coach me and coach me through
some of the challenges and you, as someone with, let's say you have a spinal cord injury,
you've had pressure sores before maybe. And so you know what it's like to navigate some
of that and can support people with resources and information and education and just hacks
you might have. Um, and so I really believe that, that someone, and so we call them, um,
SCI PHC. So spinal cord injury, peer health coaches, and it's like a community health
worker, but sort of it's, it's kind of in that same vein. And what we're trying to do,
what I eventually want to do is make this something that somebody can be paid for it
as a professional, as a, as a member of a healthcare team, why not have a trained person
who is also a peer who can, who can help the healthcare team understand maybe where this
person is right now in, in their, whatever health situation they have. I really believe
in this. I've been researching it, like I said, since 2014 maybe. And, um, and now our
neck, our, we've done this with working with people who have been injured past five years
and, um, we found big benefits in that five to 10 year frame, a timeframe for people.
And we even can help people at any time. You, anybody can benefit from a coach and from
a health coach. And what we're doing next is we're going to be working with people who
have been from, from point of injury to, to, uh, two years out. So that, oh, three years
out. So the first three years, which is the one of the more challenging, uh, times after
you've acquired a disability when you're trying to still figure out your stuff. So stay tuned.
Um, I'm excited to see what's going to come of that, but I'm, I'm, I just think that there's
a space for this certainly in our healthcare system now. And I think connecting with peers
is just a really powerful thing. Yeah. I think the left experience piece is essential. When
I, when I did a podcast with a friend of mine, John, uh, who has an SCI as well, he was like,
yeah, I learned everything from YouTube. I was just YouTube thing. And he was like, that
was my best education. I was like, wow. So yeah. Right now you have, and it's not, it's,
it's not, it's nobody's fault. I want to be careful here. It's nobody's fault, but our
system is weird. We learn how to be disabled from non-disabled people. That's the model.
Yeah. Yeah. Yeah, absolutely. And, um, I mean, I could never speak on the lived experience
of, of what, uh, you encounter on a day-to-day basis. I can only like try to learn and support
you in that regard. Um, I, so the, the peer mentor model is between two individuals with
SCI. Um, would you ever not want to be around other people with SCIs? Like after your injury,
do you think there's some people that don't want to associate with the community and like,
how do you navigate that relationship of people that are resistant to support? Well, I think
that, uh, most people after they initially experienced a spinal cord injury, uh, they're,
they're looking on the internet, they're looking everywhere, their friends and family and everybody
they know is out there scouring the internet, looking for the cure. Right. And, and, and
because it's so ever present and people talking about it, it can really become the main focus
of somebody. When am I walking again? When am I walking again? When am I walking again?
And I used to go in and visit people at, at, you know, while they were in like inpatient
rehab, um, and be, I was a peer mentor in that space. I have been for a long time and
I've had, I had to stop because all people, nobody wanted the, the person with the new
spinal cord injury did not want to see me because to them and understandably because
of the messaging of the world, uh, to them, I was a failure. I'm in a wheelchair. I am,
I am not, I am not at all what somebody wants to be. They want to be walking out of here
and the, and, and there's that, you know, denial is a really, really important part
of managing trauma. Um, at some point you have to work through that, but, um, I think
it's easier to focus on something that maybe you understand than something you don't. So
somebody who has been walking and then can no longer walk, they want to walk again. That's
what they see as, as the point of all of this, not live again. And, um, and that's the messaging
that you get is, is like we were talking about with the measurements of, well, you have to
get all, you know, all you have to get return muscle return in all the areas. And that is
going to allow you to be an independent person. And, um, and I, I don't, I don't believe that.
Um, and so I think it's just this, it's this navigation anyway. Um, I got, I became a burned
out peer mentor because I couldn't talk about walking anymore. Now, who did want to talk
to me when I would go into the hospital setting, family, friends, anybody who was able bodied
and connected to this person who was like, wait a minute, how did you get here? I drove,
you can drive like, yeah, it's not rocket science and it has been around hand controls
have been around for a long time. I am not amazing. Believe me. Uh, but that is like,
I didn't know you could drive or you know, what kind of, you know, most people, unless
you are in the world, you see wheelchairs very differently. Like you, Brendan know when
you see, you know, like, whoa, that's a titanium chair. And I know why you have all these parts
to it. Right. Cause you, you understand all this. The general public doesn't know that
there's a difference between wheelchairs that hospital wheelchairs are ridiculous and you
need a lightweight chair to get around. Like people just don't see those things like, like
I do, like, like those of us who use them every day see them. Um, so I, I think, I think
that, um, what's nice about being this peer health coach, this peer health coach role
is really nice for people like me who want to support people in learning how to manage
their spinal cord injuries better. But we just want to stop talking about things that
nobody can do anything about right now. Like what you can do something about, I can't say,
you know, my, my PT, my, my, I had a really great PT and, um, in rehab and she used to
say, I don't have a crystal ball. I really don't. And so I have no idea what the outcome
of any of this is going to be. But what I do know is what is going on right now. And
what we can focus on right now are these things. You know, we can focus on transferring, we
can focus on getting stronger. We can focus on learning how to propel your chair better,
you know, those kinds of things that are going to help me in my day to day life. Um, so,
um, yeah. So the question you asked me, I've gone far from, I know, but I do think that,
uh, the, the, this peer health coach role is a nice space for lots of people who are,
who are tired of talking about walking and want to talk about living. Yeah. I want to
go far from the prompts. So, um, I'm just here to listen to you, you talk. That's, that's
the general idea. I'm hoping I'm giving you something that's worthwhile, Brenton. Absolutely.
You are, um, you have a publication on the relationship between loneliness and health
outcomes. So I think like something like this, and it's not exclusive to the SCI population.
I'm sure we can look at any population with or without a disability and probably, um,
yes, find a correlation between the two. So, um, I guess maybe that's why I think the type
of inclusive like training environment that we've created here in Massachusetts is important.
Um, vitally, vitally. But I wonder like, so your model is between multiple people with
SCI. Sometimes I'm trying to push a model where it's people with and without disabilities
seamlessly coexisting is, is an environment that only trains people with disabilities
or one type of disabilities inherently inclusive, or do you think you need the incorporation
of people without disabilities as well? I like that. I actually think, well, I think
you could do either. I like it with everybody together. You know, the gyms that I've gone
to in my, I don't have a gym right now, but when I, when I found gyms, they have been
gyms that are fully, that are inclusive where I see all kinds of people and they see me,
uh, because there's inherently education going on. As long as I'm able to say to somebody,
let's, let's, let's calm down on the inspiration porn here. Um, I showed up here because it's
accessible and I'm making, I want to work out having a spinal cord injury. It doesn't
make me inspiring. It makes me a need to be able to, I have different needs than you do
and how I'm going to work out, but it doesn't affect the fact that I don't want to still
be fit. Not everybody's spinal cord injury wants to be fit by the way. So anyway, I think,
I think as many, I, I'm a big believer in diversity. I think it's a superpower. I think
we have it all. Some people have it all wrong. I think there's multiple ways of solving a
problem and when you get input from all the people involved, you're going to, you're going
to create a sustainable solution versus one that's only going to last for a moment or,
you know, a couple of weeks or whatever. So I think the way you are going, this is one
of the reasons I really want to continue supporting you and your work is it's, it's, it's ground,
it's innovative. Um, and you don't see it like that, but it is, and it needs, that's
the model to me. That's the model. I think this coaching thing is more of just a one-on-one.
How am I going to get through to do the things I want to do and how do I, how am I going
to do that? How am I going to navigate these potential health challenges in my life? Uh,
and so that I can move forward and do what I want, um, whatever that might be. And, and
I think that, that that's different than going to a place because I might, during a coaching
session, I might talk to somebody about going to a gym. You know, have you ever thought
about going to a gym? You know, Oh, I don't know. I don't know. I don't know if they know
what I'm doing and I don't know what I'm doing and I don't know, you know, all these potential
barriers that are, that are real, not just imagined, but they are also imagined. Um,
you know, coming to your, your fitness center, nobody has those, like everything's accessible.
So there's no questions there and you know what to do when somebody does show up. You
understand that how to help them or how to teach them what, you know, to use the equipment
or whatever. So I like, you know, it's like all the adaptive sport experiences that I
have, you know, I like to ski, but I don't want to ski on a, on a disabled mountain with
disabled people, you know, like, I don't even know what that looks like, but I want to go
ski at Bretton woods and I, and I want to ski with all the people here and I want to
get on all the lifts and why not? They're here for me. And, and then I'm skiing with
people and they're skiing with me. And I think there's a lot of power in that.
Yeah. And that's, and that's really only one of the, one of the only means of educating
the general population as a whole as to what people with disabilities can do. So it kind
of reframes their expectations. And I think it makes you more approachable.
I think this is true time and time again in my life. When I appear in a wheelchair, everybody
runs away from me. When I appear in my hand cycle, when I appear in my sit ski, when I,
when people see me using the equipment I use when I sail now, it's like, wow, you do this
too? How do you do it? And now, now it's like, it's like a visual representation of the
fact that we have something in common. Yeah. Spartan recreation can be so powerful.
Yeah. Yeah. A lot of people don't think that they see somebody sitting in a wheelchair
or see somebody with any, any visible disability, let's say, and like, Oh, that's not me. Or
in fact, Oh my God, I hope that's never me. That's what people think when they see me,
you know, Oh my God, what happened? Was I born like this? Oh, there's always, can I
have sex? And, you know, you know, those are the major questions of people, of able bodied
people. And, and it's always fascinating, but it's, it's the truth. And I think when
you can see that you actually have something in common with someone, it breaks down that
really big barrier of you're really different than me and I'm never going to get you.
Yeah. Yeah. I remember a couple of years ago, you had mentioned in one of our conversations,
I probably only remember it because it was confirmation bias for me at the time, but
you, you mentioned that you were, you almost preferred to work with personal trainers instead
of physical therapists. And in some ways, what do you think is the line to like not to cross
between what a personal trainer can do and what the physical therapist can do?
Ooh, that's a good question. Especially in today's world where you have personal trainers,
you have all kinds of experience behind them. I think, I think the, the, I think if you're
dealing with a, a condition that you're the trainer doesn't quite understand, like, you
know, how far can I push your shoulder? You know, a trainer would be like, we're going
as much as we can. Right. But, but maybe for me, that isn't the, I used to, when I was
in my Paralympic campaigns, I used to go see this awesome trainer, but he would train me
to the point where I literally couldn't drive home after, after working out. I couldn't
drive home. I had to sit for a half hour and recover before I was strong enough again to
drive. You know, that's probably on the edge, you know, for, for an Olympic athlete, that's
not on the edge at all. That's to me, in my mind, that's standard, but, but in my life
now I couldn't go see somebody who's going to push me that much because I may not be
able to do the things I need to do in my life that day. And so I think trainers don't always
understand that. And there's no knock on trainers, by the way, I'm not trying to create an us
in them world. I think a physical therapist might understand that more, but they may never
push you hard enough as a result. Right? So I think, I think it's up to the person, what
they, what they prefer, who they prefer, like working with, of course, there's always the
insurance factor. But I think healthcare is very limiting to those practicing healthcare
now. You're only allowed 15 minutes or whatever with a physical therapist and you're never,
you're going to work with all the assistants and everybody else while they're supervising
other people. You have a trainer, they're with you. They're with you. They are training
you. They are with you for that full hour or whatever that session time is and get to
know you better and can develop this really powerful relationship. So I have better relationships
with all the people that trained me than I do with, with this.
Yeah. And I just, I just don't want disability to be continuously synonymous with injury,
which it seems to be the case when like only physical therapists work with people with
disabilities and like you mentioned before, you don't want to be a patient forever. Like
how motivating is that to go to PT and do your pre-hab exercises? Right. Exactly.
I don't want to spend my life in a gym of a, of a, with, with a therapy gym. You know,
I would prefer to spend my time in a gym, gym, like where I'm making my choices and
making and doing the things I want to do to get myself stronger. So I just think there's
a point where you have to stop being a patient and you really have to move on and be a person.
And the whole point of therapy is to prepare you for being in the community. And that's
where you are. You are in the community out there saying, I am here. And maybe, maybe
that would be a goal that somebody who's newly has, let's say a spinal cord injury and they
want, you know, they're still an inpatient and maybe then they, they come home and they
have to be an outpatient for awhile. But their goal might be to be, I want to go to unified
health, you know, I want to go there and, and what a great goal for therapy. And then
now you're ready and you can be discharged from that and come into a place where you
feel like a human, not a patient. Yeah. And you're focusing on what you can do instead
of what you can't do. Not only that, but you're out in your world, living your world and you're
coming across the things, you know, in a, in a rehab setting, everything's kind of accessible
and the, you know, it's all like linoleum floors and you know, things are, there's bars
and there's not always where they're supposed to be, but at least they're there. And, and,
and in the real world, none of that stuff is there. And so you have to navigate, if
you want to be on the real world, you have to learn how to navigate some structural inaccessibility.
And I think that's what a trainer can help somebody do. Yeah. Yeah. And I, I always like
collaborating with the clients, like medical teams. So we'll get like, we got a client
about a year ago, post heart transplant. So I'm emailing with his pulmonary therapist
from Spalding and asking her kind of how she sees the recovery going. And after a little
while she's like, all right, yeah, it's up to you. I'm like, oh, all right, I guess,
well, I guess we'll just, we'll just keep going with what I think. So, but I'm also
interested in like, as we teach personal trainers and strength and conditioning coaches, how
to work with adaptive populations, like how, I'm very interested in how I can measure that
they've acquired and are able to apply the information. And I know I was reading something
about your course at Brown and how you don't have a final exam. You have a community impact
project and I'm just really interested in, I guess, assessment of learning and application
of learning. Cause I mean, I want more gyms like mine to exist, but I'm not too naive
to assume that someone can just take my online course and be ready to go. This is a dozen
years of working with hundreds of people with disabilities and that, that portion is missed
in the online learning. So I'm not sure if I'm going to espouse like, oh, personal trainers
can work with people with disabilities. Like I want to make sure I'm sending them to the
right people and the qualified people. And like you said that know how to work with the
adaptive population. So I'm not sure exactly how to gauge that or measure that. Yeah. And
it's not fair for you to try to measure it by then looking at the people who have taken
your course and then seeing who has set something up, you know, who has made a gym that's like
mine of these people that have taken my course. That's going to be really unfair to you because
that there's so many other, other factors that are involved in setting up a gym. And
I think you're right. That is a really interesting thing. I wonder if you could also the measure
attitude change of who are the clients I can see now. I thought I only had, I mean, think
about this from a market. I know you always think about this from a marketing perspective,
which I love about you, Brendan, because you see disabled people as a market and we are
a market, but the rest of the world doesn't see us as a market because they see us as
charity cases or as like, oh, well you do that for free, right? And it's like, well,
no, why would you offer this for free? Like, no, these are my services. I'm trained professional.
No, it's not free. There's value here. But I think that to me in general, accessibility
is more of an attitude. And what I mean by that is thinking about, of course you can
get there, right? If that's your baseline of, of course you can get there, you're going
to help somebody problem solve how to get there, wherever there is, right? And I think
there is a lot of value in that because so many people like, well, this is what you have.
Good luck and walk away. Like that cardiologist said, you know, like, well, it's up to you
now or the pulmonologist or whoever it was. And I, and I, I, you know, basically like,
oh, my job is done here. Um, and, and that's kind of the goal of healthcare is to discharge
you, right? But that isn't the goal of a, of a fitness professional. The goal of a fitness
professional is to keep people coming so they, they maintain or improve their strength, their
fitness, their agility, their whatever they're working on. Right. And, um, and so I, I do
see some differences in those spaces too of, um, healthcare provider, there's an end trainer.
There's no end. Yeah. That's, that's interesting perspective. I hadn't really, I hadn't really
considered it because I think I was using how many programs like mine exist as a measuring
stick to the efficacy of a course that I'm teaching. And so now we're almost considering
like, oh, do I just, do I need to open more gyms? Like that, that wasn't the avenue that
I wanted to go. That's why I made the course in the first place, cause I didn't want to
own a bunch of gyms. I want to help people run more inclusive programs. But I'm like,
huh, I'm teaching this class, like a few hundred people have taken it and I haven't quite found
another gym like mine yet that's existed. I'm like, okay, maybe I just have to keep
going. But then we apply, then we apply for grants and they want to see an impact. And
so I'm like, okay, a few hundred people have taken my course. That's not really an impact
though. That's a business, uh, thing for me, but it's not showing how many people with
disabilities benefit from my course, which is what the ultimate goal is. Um, but I think
I'm not going to solve the problem in during this podcast, but I really want to think about
that. Maybe we can get another deck student for you. I'm always open to, uh, working on
projects like that. But I think there's things you could already do that would show what
I want to think on that because I do think that that is by looking at the gyms at events,
I mean, you're, you're looking, that's, that's really tough for you to show impact in that
way. I think you could show impact in quickly as a result of this course, you could look
at attitudes of people. You could have them take something pre and you can take something
post the actual course that would show, uh, probably what they've learned. But, but, and
then maybe you could contact those people a year later and ask some more questions that
are a little more attached to the training that you do that versus that big end product
of who's running a gym like me. Like you said, like there's a lot that goes into that.
I want to improve our pre and post confidence, uh, surveys. We have some stuff in there,
but, um, it could definitely benefit from being more valid and reliable as a scale.
Um, and just like, I mean, when we teach a course, so YMCA, YMCA is a completely different
model than my gym. Uh, so it's like, they're, I don't, they're never going to look like
mine, but that doesn't mean they necessarily have to. I meet with a couple, um, Massachusetts
and New Hampshire branches on Friday to talk about like having a select few, and they've
already had 50 plus trainers take the course, but we're trying to identify like a few that
are more motivated in this area and then seeing how many people with disabilities they currently
have in membership and then how many they can get with some more concerted efforts of
recruiting and relationship building with community programs. So, um, that, that will
be an interesting project to just kind of see how it can influence like the YMCA is,
which are perfect because they already have a price point to be accessible, a mission
to be accessible. So they are, they are really the perfect partner for me. It's just like,
I guess I might have to dissociate from like, it has to look like my gym. It doesn't have
to look like my gym. Um, just people with disabilities just have to benefit from it.
I know the Quincy Y has, I've never been there. I know they have a big program. Um, and I
know, and other than that, I know about, you know, the Shirley Ryan center out in Chicago,
um, used to be the rehabilitate rehabilitation Institute of Chicago, but now it's called
the Shirley Ryan center. They have a very big, uh, uh, open gym where you have, uh,
you know, patients are going there all the time, right? So they, they can use it. They
can use it after their discharge is belong and go work out there, but also are the doctors
and the nurses and the therapists and the administrative people and all the people that
work there. So, no, I don't think there's anything like what you have, but I think there's
bits and pieces of it. And maybe the goal is more to figure out what are the bits and
pieces that need to be in place for this to happen. And like you pointed out, one of those
things is access to people. And it's fascinating to me, um, how few people are, I'm not marketed
to, no one contacts me and says, you know, Hey, I've got this accessible gym. Do you
want to come? Like when you, when you watch, uh, the fitness center, those ads, um, for
like the big fitness centers, you know, the 24 hour gyms and all those places, you don't
see, you don't see wheelchair users in those spaces. And so as a wheelchair user, I'm like,
well, I don't think I can go in there and use that equipment. So that's off to me and
I only can go to therapy and I only can go to these because that's what's designed for
me. And that isn't the case. So I think it's more of a marketing issue, um, in, in some
ways. And, um, anyway, I think it's a, it's a really fun problem to try to solve and address.
But I think the biggest thing in my mind is getting people with disabilities to believe
that they belong in a gym. Yeah. Yeah. That's, and I'm not conceited enough to say that like,
Oh, my model is the model that I need everyone to abide by. It's just, it's just, it's just
a model. It's what I know. It's what we've done. And it's evolved over time. What it
was five years ago, probably shouldn't be, um, what I'm teaching now. And so that's why
the continual evolution of it's important. Yeah. But I think what you're doing is with
this course is awesome. And I think there are, uh, you're, you're at least opening up
minds and I think you might want to measure more of those things because you can measure
that you can look at how did my course change the way this person approaches fitness with
different populations. Yeah. The marketing piece you mentioned is tough because sometimes
it feels like you're almost exploiting someone's disability. Um, like you need to choose a
physical one. I have clients with autism, intellectual disabilities that get shared
on our feeds and you would never know, um, that they have that unless I'm like, Oh, look
at this autistic athlete. Um, I'm never going to put that in a caption. So it's like how,
I guess, how can you market to the population without exploiting or overemphasizing the
fact that you're inclusive, uh, is a challenge as well. Well, I think it's a challenge especially
because I think you have to, that's when you go back to your membership and you ask them
what, what does exploiting look like to you? Uh, because again, some people like me want
to promote what you're doing. You know, we want to say this guy gets it. He is working
really hard to make sure everybody is included in fitness and everybody should have access.
That's a, that's a, an, an, you know, is that a right to some, is that a, you know, inherent
right that we all have to be able to move? Um, anyway, uh, I don't want to get into that.
I'm not a Greek philosopher, but, um, yeah, I think it's, we still haven't discovered,
this is still an issue, right? Nobody has discovered the exact formula of how to get,
you know, for every one person you see out in the community with a disability, there's,
there's 10 at home not going anywhere because they don't think they can or they can't for
whatever reason. So it's collectively a societal issue. You know, I always think about disability
as the last form of, of, of diversity that we have yet to fully embrace. Um, and it's
that final frontier of, you know, people don't think about disability as diversity, but,
but it is, and it's the largest, you know, one in, one in what 26% of the population,
anywhere from 20 to 26, depending on what data set you're looking at, um, lives with
a disability. That's a large part of our population in the U S. So there should be lots of opportunity.
It's just people have decided that we aren't, we are not marketable. Yeah. Yeah. And I know
in like, even in Jenny's paper, um, he cites a study from, um, that, that just showed that
like only half of physicians would welcome people with disabilities into their clinics
and like 80% report that they assume that someone with a disability has a worse life.
And, uh, those, those statistics are among the most educated of the people in the world.
So like, how can we expect those that haven't even gone to those lanes of education to have
high expectations for people with disabilities? Um, kind of what you had mentioned earlier
about rec, like you going out and skiing alongside people without and showing them and kind of,
uh, facilitating those conversations seems to be a really important way to do it. But
sometimes the, the challenge in front of us seems overwhelming in terms of the scope.
Um, yeah, but yeah. And I, like, I tell, I tell, um, I, I get to work with these really
wonderful young people, these students and everybody wants to change the world. And I
love that, but you can only change your little, you have to start in your corner and you have
to start in your little space. You can't change everything. Uh, you have to be a part of that,
right? A part of the push for change. And, um, you know, you've been leading, you've
been leading the fight for a long time and it's so great that, that you are being rewarded
for that. You know, so many people, they try and maybe it doesn't work and then they get
frustrated and just kind of stop. And I know, um, that, that can make sense to people. Like
you people just don't want this. And it's like, no, us people do want it. We just need
to be, we've never been told that we can. And it's only people like me who have had
so much privilege and so much opportunity to know that I can do this. So I go out and
seek it, but that's because of, of all the things I can do that I have access to somebody
else who never knew this was available. Uh, it has a, has a much more challenging time
of figuring out what it, what it can look like in their lives. So I'm not, I think
that I might be biased a little bit by my experiences of, of course you can, but, but
not everybody can. Uh, but once they, once you do access it, it's like why you always
hear that. I always hear this from, from people with disabilities, like, I don't know why
I didn't do this sooner. I don't know why, you know, once you get them actually doing
it and you know, some getting somebody on a sailboat for the first time or getting somebody
skiing for the first time. Like I love that because you get to see that like mind blown,
like, Oh my God, I didn't realize I could do this. I can do this. Oh my God. And then
families around them, we can do this as a family. We can go skiing. Like I didn't know
we could do this, you know, and the possibilities, that's what health promotion is, right? It's
it's being open. It's possibility and the opportunities of possibilities. And yeah.
Yeah. When, when Dennis was with us senior year and he was doing his initial practicum
with us through UMass Lowell for his exercise science degree. And when he first told me
he was going into OT, I was like, Oh, that was interesting. Most of the most of our practicum
students go into physical therapy. Why do you, why do you think some people go into
PT versus OT and what are the different environments and what are the different goals, I guess?
Yeah, you know, when I was, when I didn't know about OT when I was all PT minded, because
it's interesting and it, I'm not going to get into the politics of it because it's long
and extended. But, you know, back when I was in rehab, there was always this battle between
what PTs did and what OTs did and you can't cross over and you can't do this. You can,
you know, drinking water is an OT activity, but walking to the water fountain is a PT
activity and like all this breaking up of body parts and people and saying, well, this
goes here and that goes there. And I'm like, well, who puts it all together? So I think
what physical therapists do is work on somebody's physical abilities. And what occupational
therapists tend to do is look at what activities are meaningful to you or what are the activities
of daily living that you have to do. Like you have to, you know, most people get dressed
in the morning or get dressed at some point during the day. Not everybody gets dressed
in a suit, but you put on some kind of clothing or, you know, eating. Can you eat, you know,
all those things. So OTs sort of are more in that physical therapists may help with
the strength and the range of motion. It seems like in this world, we have, it's sort of
separated and like PTs take the, from the, you know, waist down and OTs take upper extremities,
you know, I don't even think that's necessarily the case, but that's sort of where they have
divided themselves. And so you can see OTs clinic, you know, clinicians working in, you
know, hand therapists like what Dennis likes, you know, some people really love working
with hands and wrists and elbows and shoulders. And OTs can do that clinically, or they can
work in, you know, they can work in mental health and they can work with kids with ASD
and working in sensory processing. They can do all kinds of other things sort of that
help you do what you want to do. So I kind of look at basically should, should be working
in conjunction, should be working with, with each other. Ideally, when they work together
with physical therapists, you can really work on the thing, getting that person strong and
capable to do what they want to do. So I kind of see those as the differences. I'm sure
there's a lot of people listening who would say, well, I would say this and I would say
that. And, you know, I'm sure I'm missing some things, but you know, fine motor skills
with your hand and things like that. But like, like I had carpal tunnel issues, obviously,
because I've had the use of my, my one functional hand for 20, 34 years. So obviously something's
going to happen. So I had surgery on it and I saw an OT because I wanted to see a hand
therapist so that they could get my wrist and hand functioning again. After that, I
saw, I went back to my trainer and worked with him. Now some physical therapists work
in that space too, but I just, that's the path I took with, with rehabbing from my wrist.
I just, I tend to try to avoid clinical medical experiences as much as possible because I
don't like being medicalized and I don't like being limited and I don't like entering
into spaces that are not designed for me. And it's fascinating to see the number of
physician offices and practices that are not accessible. Don't have a bathroom I can use.
Don't have a table I can use. Don't have pretty much anything that, that I can use
in my recovery. Is there a database of what offices and stuff do? How do you find the
appropriate ones? Well, an error, unfortunately, or like I'll, I literally will drive by places.
Like does that look, I can get in, you know, because I don't want to have that experience
of being late for an appointment because I couldn't get in. That has happened to me many
times and it's very frustrating and you end up getting kicked out of the practice if you
don't show up enough times. So I tend, I'm different maybe in a lot of ways. Like I tend
to try to avoid as many medical interactions as I, as I guess I can. And I prefer to work
with regular humans as much as possible. Because a physician, yes, they're educated, highly
educated, but highly educated in one thing. Right. And that is how a standard body works.
That's what they learn. Yeah, that stuff. I had a high school student come to the gym
last week and I think this year she was introduced to like a unified PE class and really grasped
it and really loved it. And that was actually a similar experience to kind of how I got
into this in the first place with unified sports. But she was asking like, oh, how do
I, I think she wants to pursue health sciences next year at the university where she's playing
lacrosse and she's like, should I go to PT? Should I go to OT? Should I become an athletic
trainer? She's like, what'd you do to get here? And I'm like, I'm like, well, I studied special
ed and then I went into this, this and that. And there's really no one path. And I found
myself, I found myself struggling to guide her, not that it was my responsibility to
guide her, but offer any suggestions that I felt had any substance in terms of like
what direction she should go and outside of accumulate as many experiences as possible.
I think that's the way to do it. You know, I initially where I went to university of
Virginia, as you said, and they didn't have a PT program there. And I didn't know I wanted
to be a physical therapist when I entered school. And I thought I wanted, I don't know,
I was like some 18 year old. I just wanted to go to Virginia and swim and medicine. I
knew I wanted to learn about the body. I just didn't know what, cause I was 18. And I've,
I then was like, you know, being an app, cause I, you know, inherently if you're an athlete,
you end up in the training room. If you're doing it. I mean, back then, I think things
are so different now, Brendan, than when I was a student athlete. Thank God they're
much better, much, much, much, much, much, much better. But so I would go to the training
room. I'm like, well, this is kind of cool. I wonder if, if I, if I want to be this and
I could, I could take classes in athletic training. It was an option at that school.
And I was, I did my internships. I was in there taping ankles and, and I was, it was
a very male dominated world at the time. And a lot of, as a woman, even the athletes were
like, you can't take my, there's no way I don't want you taping my ankle. Well, why?
Cause cause you're a woman. Cause you could say that then in 1988. And I'd be like, really?
Okay. And then I'd take the shit out of their ankle and excuse my language. And they would
take the heck out of their ankle. And then they'd be like, Oh, you're stronger than
you look. And they're like, yeah, don't mess with me. But, but I, I then, back then it
was very male dominated and I was like, I really liked the work. I don't like the environment.
So I needed to experience that. And then I went to that PT, you know, worked at the hospital
and I was like, Ooh, I really like this, you know, and I had never had the opportunity
work to work in a community based setting. Cause that would have been like everything
for me. Cause I'm a big community based person, as you can tell. And cause that's where we
should be out in the community. What do you think needs to be done to make the fitness
industry or recreation more accessible? I think more classes like what you're doing.
I think the continuous, like, I think there's a good movement ahead and you know, I'm not
a social media person, but I think there's a, there's a lot. That's one of the things,
like you said, your friend learned everything that they did about spinal cord injury from
YouTube videos of people living with spinal cord injury, talking about what they do. I
think you can get a lot of information. I think it's dangerous cause there can be some
mis- misinformation out there, but I don't know if it's any more dangerous than in a
clinical environment. Um, so I think just the more people we have talking about this
stuff, uh, and doing it, the more it's going to get the more people's expectations are
going to sort of change, you know, um, it to, uh, you know, you go into your gym, I'm
sure, I'm sure the people that initially when you have, you know, all your able-bodied members
come in, they're like, wow, look at all this. At first they must be like, whoa, cause that's
kind of how able-bodied people react if they have never been exposed to this. That's not
their fault. It's just the way our society has, has, uh, set everyone up. Um, and the
after time, I'm sure in your gym, it's like, oh yeah, it's just these people. And I see
them as people and not as anything special. And you're okay, you're getting stronger today
or whatever, you know, and then you get more of a us and us world, not an us in them world.
And I think the more we continue pushing the us and us world, especially in adaptive sport
and fitness, the more and not make it this specialty of, well, you have to have a special
ed background, for example, like I don't even like the term special ed, like it's neither
special. I wouldn't say, you know, you have special and you have gifted, which one in
your world do you want to be right? The way we hire our guys, all of this. Um, but anyway,
I've, I've detracted again from the original question, but, um, I think it's a slow process
to change, to change minds. But I think once you do it, you create almost, um, little minions
of people that are like, they are really passionate about this. I'm sure there are people that
go through your class who are like, Oh my gosh, I had no idea this was all here. I'm
so excited. And you might get some other people that are like, this is really helpful. I don't
know if it's for me, you know, obviously you can't push everybody into that space, but
you can at least expose. And so I think the most, the more exposure, the better. Yeah.
The expectations is an important thing. And that's where I like sometimes feel like such
a, like a pessimist and a curmudgeon, but like, I'm sometimes annoyed when I see people
praising the rudimentary tasks you mentioned, inspiration porn, it's a topic that we've
talked about ad nauseam on the podcast with the various guests, but like, uh, that stuff
does, I think it does more harm than good. Um, when I see, like, when I see someone with
down syndrome and a trainer posts a video of them performing really bad pushups or really
bad squats when the client would be perfectly capable of doing, um, better with some proper
instruction. And then everyone in the comments is like, wow, this is so great. Uh, you're
incredible referencing the trainer, not even referencing the athlete that stuff. And that's
always been so uncomfortable for me. Every time I, every time I post something and the
comments get directed at me instead of the athlete. Uh, it's so great that you do this
for the kids. It's like, no, that's, that's, that's not what I'm trying to show. So that
kind of goes back to the challenges of marketing and exploitation and stuff. And, um, yeah,
I think it's never ill intentioned when people, uh, when people say like, oh, that's great.
Like, it's so awesome that you're doing that, but it's, it's tough cause I know it means
that we're stuck in the certain level of expectation. I get equally as frustrated, Brendan. Maybe
that's why we get along so well. But, but I, I think that it can drive you. I believe
I've had an up and down space in all of that, you know, of do I want to be a part of this?
Do I not, you know, I, I, I made a decision a lot. Oh, let's see. It was, it was when
I went to graduate school, when I went to graduate school, I didn't want to, you know,
I was, I had been injured for like, I'd had my spinal cord. I'm not injured anymore. I
need to be clear about that. I live with something called a spinal cord injury. I'm not injured,
but just because I, just because I am one doesn't mean I want to be in this world. So
I definitely had a, a moment with myself where I was like, do I want to continue working
in disability or do I want to work outside of that? And my, my thesis project was developing
a bicycle safety video for, for middle school age kids on wearing helmets. It was called
helmet in a jar and or jello in a jar. That's right. I named it jello in a jar and it was
used by the national safe kids campaign, which is this big unintentional injury prevention
organization, childhood injury prevention organization. And I thought that's what I
wanted to do was, cause I was, I bought into all this, like, you don't want to get, you
don't want to be at, have a disability. So this is, you know, obviously bicycle safety
matters. I'm alive because of a helmet. So I believe strongly in helmets. And anyway,
I did that, but it wasn't as satisfying as when I, you know, one of the other projects
I did was I developed an entire health curriculum for people with spinal cord injuries. This
was in 1993. There wasn't anything like that. Nobody was talking about health promotion
and disability. So I didn't have anybody to mentor me through the next phase of what that
could look like. So I had to take on, um, and I think in the end, now that I think about
it, it's because of academic ableism and nobody saw my, what I wanted to do as valuable because
nobody was talking about healthy disabled people. They were just talking about preventing
disability. Um, and I was more like, well, we're not going to prevent us, you know, eugenics
didn't work. It's never going to work. So what do we do with all these people that are
here and can't we make them, can't they become healthier? Of course they can. But there was
nobody that was there to support more academic pursuit. So I ended up going into nonprofit
and going in this, like, I do want to work with disability. So it was an evolution for
me as somebody living with disability to decide, is this the world I want to be in? And it
was, it was because I didn't want that, that you're amazing. You're amazing because you
showed up here. And I'm like, I shouldn't be amazing because I showed up. It shouldn't
be amazing, Brendan, that, that I can teach college. It shouldn't be that, that students
have never been taught by somebody. It shouldn't be that, that you are the only access to,
um, adaptive phys ed education for people, you know, it's just the way it is right now.
And these are the things we have to trust that as we keep moving forward, um, this is
going to become a bigger movement. And it has, because I can tell you when I started,
this wasn't even an option, what you're doing wasn't even an option. And now it's becoming
something. And I just feel like time ticks and everybody has their own, um, concept of
time. But I believe we have to trust that moving forward, as long as you keep the ball
moving forward, it's going to keep moving forward. And it may not look like what you
want it to look like at the end, but it may look like something you never expected also
at the end. And I don't even know what the end looks like, by the way, I hope we never
get to the end. Well, I think what you're doing is amazing because you've, I mean, you
built the curriculum similar to kind of what I aspire to do. You've educated, same thing,
what I aspire to do. And, uh, I never got the opportunity to go into higher ed. I shouldn't
say I never got the opportunity. I chose, I chose not to, because at the time there
wasn't really any incentive for me to have a master's degree in the private sector. You
kind of dictate what you want. And I, I'm not even sure if there would have been an
adaptive exercise science masters I could have even really pursued. So it was kind of
up to me to read as much as I could, kind of like the self guided education that I had
for the first few years. And I think it was, it was encouraged by my being terrified of
not having an answer for someone. And I think that that was a motivation that was really
strong. And I think it really led to a lot of my learning was just this concern that
I wasn't going to be able to help whoever came in through the door. So, um, yeah, like
I think I say in the course that you're not expected to have all the answers, but you
are expected to care enough to try to find the solutions. And I think if, um, like maybe
just lowering that fear level for fitness professionals and giving them permission,
not to be negligent, but to take in this whole population that's currently not served.
Right. And you can start, maybe you don't have, maybe you don't have access for wheelchair
users, but maybe that's something you work toward, but maybe you do have access for people
with limb loss, or maybe you do have access to, uh, the myriad and large population of
people that you don't, that, uh, that we in the disability community think of as hidden
or, um, invisible disability, you know, though, though that pop, those populations of people
need fitness just as much as everybody else. And you're not going to necessarily find them
by saying, looking for people with MS who haven't yet, I don't have to use a wheelchair
yet. You know, obviously you're never going to reach out to people like that, but you
can, you can, um, working with the clients you already have, I think you can talk to
them about what got them there, what they think would be a good way to market what you
do. And, and you don't have to use all those ideas, but why not take the ideas, like I
said, of this diversity thing, like use it as a superpower. Like how would you promote
this? Um, I think some, you be, I think it's always surprising to hear that some people
have really good ideas. They just have never been asked.
I think that's a great way to wrap it up as that kind of, I feel like that like summarizes
a lot of, of, uh, what we talked about, whether it's medical professionals, interactions with
people with disabilities or fitness professionals role in making the industry more inclusive.
Um, Sarah was a, an honor to talk to you. I went for an hour and a half and probably
could have gone for another hour easily. Uh, but I don't want to take up too much of your
day. So thank you. Uh, thank you for doing this. And I really look forward to sharing
this episode. Thank you, Brendan. I, I, I deeply, uh, appreciate
our relationship and our, uh, you know, we are, we will continue to work together. I
know. And it's because, uh, because of your, your leadership and your energy. And I value
that highly. So thank you for having me. It's been an honor to be here. I hope I gave you
something. Hope I gave you something worthwhile. Thank you for listening to the adapt X podcast.
Our effort to amplify the ideas of our guests and create more inclusive and accessible industries
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