October 10, 2025 • 30 mins
If you were to suffer a spinal cord injury and subsequent paralysis, would you know where to turn? Thousands of individuals with paralysis and their families across the country are watching Congress to see if critical services will be included in the budget. On this episode, we're going to discuss how the Christopher and Dana Reeves Foundation helps people with paralysis live independently and learn how people can connect with those essential support services. Let's meet Sherman Gillums Jr, a former Marine and the Senior Director of Public Policy & Advocacy.
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Episode Transcript
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Speaker 1 (00:01):
Involved. Welcome to Virginia Focus. I'm Rebecca Hughes of the
Virginia News Network. If you were to suffer a spinal
cord injury and subsequent paralysis, would you know where to turn?
Thousands of individuals with paralysis and their families across the
country or watching Congress to see if critical services will
(00:22):
be included in the budget. On this episode, we're going
to discuss how the Christopher and Dana Reeves Foundation helps
people with paralysis live independently and learn how people can
connect with those essential support services. Let's meet Sherman Gilliams, Junior,
a former Marine and the senior director of Public Policy
and Advocacy. Welcome to the show, mister Gilliams. It's nice
(00:44):
to meet you and I'm anxious to talk to you
about this topic.
Speaker 2 (00:48):
Thank you for the opportunity.
Speaker 1 (00:50):
So why don't you start by telling us what do
you do? I've got your title, but what do you
do for the Christopher and Dana Reeves Foundation.
Speaker 2 (00:59):
Well, it's worth mentioning that I am a person who
lives with prolyssis. I incurred a spinal cord injury while
serving in the Marine Corps back in two thousand and two.
So initially I was a beneficiary of the work that
the Refoundation does. Their intervention early on helped me make
the decisions about my care and about my prospects for
(01:19):
living after I left rehabilitation. So I've been a fan
of the organization for a long time, and in fact,
when I worked for Paralyzed Veterans of America as the
executive director, we had great partnership with the Refoundation on
a few projects, one of them being helping veterans with
prolyssis fine employment. The other was a big project, a
(01:42):
nationwide project where we sought to help the emergency rooms
better understand the unique needs of people with proalysis in
case they showed up in an emergency room and to
avoid some of the medical errors that were common. So
long before I became an employee, I was a big
proponent of work in the mission. But now I'm the
(02:03):
senior director of Public Policy and Advocacy, which means that
it's my job to ensure that our elected leaders remain
informed not just about how their decisions impact people with proalyssis,
but also what decisions they need to make to positively
impact the lives of people with as well. As caregivers
(02:26):
and the litany of other people that provide support to
that population.
Speaker 1 (02:30):
Okay, I will be honest with you. I haven't had
a whole lot of experience with people with paralysis. I
mean I have a couple of you know, friends of
friends and stuff like that. Why don't we start with
talking about kind of what you just mentioned, some of
the things that you've advocated for, and you said, you know,
(02:51):
in emergency rooms there were things that needed to be done.
I assume that would also be true for police and
fire and stuff like that too. Why don't we talk
a little bit about those things just so people can
understand what makes this so important.
Speaker 2 (03:05):
Sure, and it's not uncommon to encounter people who don't
have an experience like that. I when I got injured,
I didn't know anybody with a spankre injury. In fact,
my only exposure was Christopher Reeve. Ironically, he was the
one who, when I was a kid, was Superman, of course,
and when he was injured it affected a lot of people.
I was personally affected as a kid who wondered, well,
(03:28):
what does this mean? What does this mean when somebody's paralyzed?
And you know, he was very public about his journey
through the experience and some of the frustrations that he
and Dana Reeve, who is his primary character and spouse,
what they encountered, and it's the reason why they idealized
a National Paralysis Resource Center. But the problem they address
(03:50):
started in two thousand and two, which is when the
center was established. PROALYSS effects an estimated five point four
million Americans with spinal cord injury primarily, and we are
talking about people who are injured primarily in car accidents
and falls and things like that, but there are also
people who live with multiple scrosis, Lucarius disease, sooldure, and
(04:13):
with developmental disabilities, aging adults with strokes and things like that.
So there are a lot of people that come into
this probably not even thinking about it as a as
a being a part of a paralysis community, if you will.
So if you know somebody who's had a stroke, where
if you know somebody who's taking care of a child
with unique needs, then you probably know somebody who has
(04:35):
encountered this issue that a lot of caregivers face, of
course involuntarily. You know, they're affected just like the individualists,
but they're the ones who have the responsibility of providing
all the you know, the care and making the right
decisions on behalf of somebody who is going to one
hundred percent rely on that person's ability to know what
(04:58):
to do, and they often don't know what to do.
And so what was missing was a resource to be
that first option or that, you know, if the last
option is the best option to call? And what should
I do when my kid, you know who may have
you know, dived into a pool and now he's a
broken neck and has got to live. But how do
(05:19):
I do that? What does that look like exactly? And
so we try to take the mystery out of what
it means to live with hispina, cord injury or paralysis
for people who take care of the individuals, but also
the individuals themselves. So that sort of frames, you know,
sort of why this was necessary in the first place.
Speaker 1 (05:37):
Okay, and I assume that that what you're talking about
on the journey is not just how to deal physically,
but also in a mental capacity and emotionally.
Speaker 2 (05:47):
Right, Well, that's the part that's often underregarded. Isolation is
a major problem in this community, where people either can't
get out of their house because they physically don't have
the ability to navigate the surrounding community or mentally they're
not prepared to. You know, I think I've probably isolated
(06:10):
myself a lot more on the front end, largely because
I didn't know how society would receive me. I didn't
know how it be viewed. At the time, I was
twenty nine years old, I was a commissioned officer. I
had done a lot of great things, but all that
seemed to go away when I was in the hospital
with this Philadelphia colerad trying to figure out what is
(06:30):
this going to look like. I also had a two
year old daughter, who you know, required me to continue
to be a father. Today she's in the Marine Corps.
Very proud of her. She followed my tradition, but back
then she was just a little kid, and she needed
me to get back on my feet figuratively speaking. And
so I spent a lot of time, with the help
(06:52):
of the refoundation, in those resources, looking at what was
possible and then striving to move toward that. But that's
a mental leap that requires a lot of having the
right people around you in your ear telling you the
things you need to hear. One question, we don't want
to hear is when are you going to walk again? Right?
The one question we want to hear is how can
(07:12):
I help you? Or can I go, you know, buy
something at the grocery store for you so you can
focus on, you know, the things you need to focus on. So, yeah,
having the right support but also being in the right
head space is real critical. The great thing is I
understand how I felt for me to be in that space,
and so I understand when I encounter somebody who's a
(07:33):
new injury, and I've done this a lot, I know
where their head is, or at least have a suspicion
where the head might be. And we can help people
move through that because we understand it well.
Speaker 1 (07:44):
First off, who wrong? You know? That's awesome that she
follows your footsteps. That's great, that's really great. Yeah, I
can I can only imagine that. You know, people who've
been there are the only people who can help those
who are new to that world. And I appreciate you
sharing all of that with us, because I'm sure it
(08:06):
was not an easy thing to go through yourself. I
know what we're talking about today is you know the
threat of federal funding being cut. Of course, until there's
a vote. We don't know if that's the case, but
do we have any any indication of how much of
that funding could be cut or you know, I mean,
(08:29):
surely not all of it, but you know what would
that look like?
Speaker 2 (08:33):
Right? Well, that's why it's important for me to come
on to your air today, because I think a lot
of this is about educating not just our lawmakers, but
the American people and why this is important. All these
decisions are being contemplated in a vacuum, oftentimes when they
don't have the benefit of understanding what exactly are the
downstream consequences. The National Process Resource Center is a federally
(08:56):
funded program through a competitive grant process, so we've had
to show our work over the years to have this
renewed every time, and it's been renewed every time on
a bipartisan basis. We've enjoyed support of every administration in
the White House since two thousand and two, as well
as the Congress, and most recently we did have the
(09:18):
House and Senate Committee's vote in favor of funding the
National Paralysis Resource Center for fiscal year twenty twenty six,
which reflects the faith that the American people have in
our work and the years of trust that we've been
able to established. But as you said, nothing will be
final until the entire Congress volks and passes a build
(09:38):
and the President signs it. And that's why we want
to use this shutdown period to fill the void with
information about what they'll be talking about relative to our mission,
in addition to the other things that will frankly distract
from what we're doing if people don't have a moment
to sit down and hear it. So this is a
(09:59):
real important conversation for us to have at this time
before there's a vote, so that they can make an
informed decision when the vote comes.
Speaker 1 (10:07):
Yeah, most definitely. Now are those grants through Medicaid and Medicare?
Are they separate from that and through AHHS in some
other way.
Speaker 2 (10:18):
It's not related to Medicare and Medicaid, but at this
funded through the Department of Helping Human Services as an
extension of their administration for Community Living. There is an
agency that's set up to ensure that people in communities
in the aging and disability communities have resources. The problem
(10:38):
with paralysis is you can't treat it like every other disability.
It's not like somebody who is older and maybe has
some arthritis in our legs and therefore need a wheelchair.
Prolysis has an entirely different effect on the entire body,
and so having people access those services without the benefit
(11:00):
of a competency in paralysis and the unique needs means
that you're going to get basic services that don't really
address things that are specific to your circumstance. And so
the Administration for Community Living use this the refoundation as
an extension of its mission of enabling community living for
(11:23):
people with paralysis, and so we've been funded as an
extension of ACL to do that work. And since that time,
again we've had to show our work and show the results.
But there isn't another national program that does the kind
of work that we do, and that's the problem. If
this program doesn't exist through the work that we do,
(11:45):
then it doesn't exist at all. And it takes us
back to two thousand and two circumstances where people were
basically relying on local communities to figure it out, with
no knowledge transfer or standards of excellence being shared across
the programs. And so we have that situation now where
we enjoy that, but we want to make sure that
(12:06):
that remains in place.
Speaker 1 (12:09):
Okay, I understand that I've worked in nonprofit before. When
I did it was through a local United Way. I
assume that the federal funding isn't the only funding. I mean,
do you get United Way funding? Do you have other
funding sources that might be able to help if the
(12:29):
federal funds, you know, start to decrease.
Speaker 2 (12:34):
Well, that's the scenario that fortunately I don't have to
contemplate through the work that I do now. But we
do enjoy support from the corporate sector. We've got a
lot of private donors who have supported this mission for
an awful long time. But again, this is a this
is a big mission to take on, and having you know,
donations here and there is great, But this isn't really
(12:58):
about the money. It's it's about the ability to do
the work that we do. And there isn't another way
that this has been replicated anywhere in the government. And
so in addition to the funding that we would need
to do the work, if this goes away, you just
don't have this resource available at all for anybody who
might be in a situation I was in back in
(13:19):
two thousand and two, and you'll have more situations where
we'll start to ask, well, what do we need to do, Well,
we need to have something like a process resource center.
Well that's what we have now, so why would we
would make that go away? So yeah, if we have
to figure out ways to do this work without the funding,
I guess that would be a task that will take on.
(13:40):
But at this point, it doesn't look like it's really
about losing the funding as much as it is about
reminding people about why it's here in the first place
and the work that we do. So I'm focused forward
on that at this point.
Speaker 1 (13:54):
Okay, that's good. I just wanted to make sure that
if you know, if you thought the threat of partial
or worst case scenario, all the funding was going to
be taken, that there was also work to pivot in
some way, whether that be local chapters in different states
and communities that you know, can drum up finance, you know, donations,
(14:17):
things like that or whatever, because, like you said, this
is something really important we don't need to lose it.
Can you walk us through what it's like if you
do have an injury when you contact your organization, you know,
let's say I make a phone call right then, what happens.
Speaker 2 (14:34):
Right, Well, the first person you'll probably talk to as
an information specialist through a hotline that undertakes the effort
to provide wrap around services that are specific to the
individual making the call. This one on one support is
important because that's the opportunity we have to customize what
(14:54):
we need. Right there's no one size fit all solution
to every situation, So we have to listen into the individual.
Where they live. Is it in a rural area, an
urban area, Is this a person who was older, younger?
Things like that, what's the you know, what's the state
of the caregiver caregiving situation? And once we do that,
we can begin to look at which resources are best
(15:17):
fitted for that situation. If the person's a veteran, we
have a Military and Veterans program that helps veterans navigate
all the red tape that they might be encountering in
health systems. In some cases, veterans are injured after service,
well after service, and they don't have a spinal cord
injury that happened while they were in uniform, and so
that's sort of a different problem that we have to
(15:38):
make sure that those folks are supported as well. We
also have a peer and family support program where the
person who is engaging, the individual making the call has
been through the situation before. Right, This reduces isolation. When
you pair people along lines of experiences that are similar,
(15:59):
you take the the feeling of being isolated out of
the dynamic and uh and improve health outcomes because people
feel better about what the future holds. The quality of
life grants enable us to spread our influence through the
mission of community based organizations that set up things like
adaptive sports programs and recreation opportunities. I remember what it
(16:22):
was like to go fishing again on an adapted boat,
you know, early in my injury, and and then feel
like I was connected to the community. And then finally
that process resource guide. It's the it's the Bible, and
it's the thing that contains all the dimensions of living
with paralysis that I found helpful and help me find
(16:42):
answers to questions I didn't even know to ask. And
so because we've anticipated what the needs of these folks are,
coupled with the ability to listen to them at a
time where they need to be heard, that presents a
more comprehensive approach to getting people on the right path
when they face the situation Okay.
Speaker 1 (17:01):
I love that, and I have to be honest, I
am curious. What are some of those questions that initially
you didn't know you needed to ask about just out
of curiosity.
Speaker 2 (17:14):
Yeah, this is this is really an important conversation because
it's an intimate conversation that I had with a lot
of young men who want to know can I start
a family? You know, at the time I was injured,
there were veterans coming back from a brock in Afghanistan,
and some of them are missing body parts. Some of them,
you know, were just in a very bad place mentally
(17:36):
until I had discussions with them about the possibility of
being able to have a family. You know, these are eighteen, nineteen,
twenty twenty year old young men and there weren't women there.
Otherwise I would mention women as well. I only engage men,
but there were you know, these are questions that are
pretty important to somebody was at that stage of life.
And then some of the more practical questions are, well,
(17:58):
you're telling me I can drive again, but what is
that look like? Like? How do I get back into
a car? What are the technologies and things like that,
So they have to see it in order to understand
that it's possible. We take them on outings. We take them,
like to a mall area and have them you know,
navigate the ATM machine on their own and paying a vendor,
you know, so that you don't always have people ignoring you,
(18:20):
referring to your caregiver when you're sitting right there to
speak for yourself. So those are the types of dynamics
that we anticipate happen to just about everyone. But then
the conversations get down to who the person is. We
know that there were people who have families already. If
you're a parent and you already have kids, your question
may be, well, how do I do this with a
(18:41):
you know, a child who hasn't seen me in this state?
How do I maintain that sort of parental stature? And
so those are conversations that are unique to the individual
and the circumstances. So we open the whole range of
you know, inquiries up for discussion and make people feel
like they're in a safe space to have conversations that
(19:03):
are pretty tough to have with people who don't understand
what they're going through.
Speaker 1 (19:07):
I love that, and I think that, like you pointed out,
it's really important for people who you know are in
a chair to feel like they have their own voice
and not have to refer to their caregiver and people
around them. And I love that you teach them to
get back to being assertive, you know, and don't allow
(19:29):
people to ignore you, because I think that would again
play into that mental health role if you didn't do
that right.
Speaker 2 (19:38):
Yeah, well, we fortunately, we've seen example after example of
people who have navigated life with a spot upord injury
and other paralyzing conditions like MS to know that they're
out there. We see actors, you know. Now we're seeing more,
you know, athletes that recover and become spokespersons for the mission.
(20:02):
So we're socializing a message that life isn't over, but
there's nothing like feeling it for yourself and living in
the circumstance that you feel like nobody else understands. And
it's important as early on to pull people out of
that slump because it affects how you approach rehab at
that point, or the enthusiasm that you apply to occupational
(20:27):
rehabilitation and things like that. So we want people to
feel like they're not alone, that somebody has been where
you are and We're going to jump back in the hole,
and if we can't pull you off through the top,
we're going to dig a tunnel our way and find
another way to get you through it. Because every experience
is different.
Speaker 1 (20:45):
I love that. That's so awesome. So let me ask you.
This is your organization, I assume so, but I'm gonna
ask anyway, just in case anybody listening is also wondering,
do you guys also help people when they have to
adapt their home, you know, because a lot of bathrooms
and things like that are just not on the scale
(21:05):
that needs to be for someone to in those situations.
Speaker 2 (21:11):
Well, those are the questions we get and in every
situation that's going to differ. We may be talking about
somebody who is renting and the question may be, you know,
can I make the landlord, you know, adapt the bathroom,
and it depends on you know, ordinances and state laws
and things like that. But you also may have somebody
who is moving and building a home, and we know,
(21:34):
for example, if it's a veteran, there are resources available
to get your home evaluated, and there are money set
aside to actually help put those adaptations in the home.
And there may be other state benefits county benefits in
the various rehabilitation offices that do the same, that help
(21:55):
people who are looking for employment have things like adapted
restaurant room so that they can get themselves ready for
work every day. You know, you've got to take a
shower and get clean and all that stuff. So it
kind of depends. And again, this is why we have
to have a national framework, because not every locality is
going to think about these things. And it's not until
we challenge the various communities to think about the benefits
(22:19):
of having a resource that helps people adapt a bathroom,
which you think is it's a basic human right right
to be able to use threshroom with dignity that's not
assumed in most places. And you have to have people
like us go in and educate the local communities and
various disability offices with the importance of having this specific
(22:42):
type of consultation available to the residents in a particular
count of your state.
Speaker 1 (22:48):
And I imagine you do it with way more finesse
than I would, because my philosophy would be I'm going
to bring in a portable toilet and tell you to
go ahead and use it. Go ahead right here in
the middle of the office.
Speaker 2 (22:59):
It's fine, well, well, the great well, the great well.
The great thing is, you know, when you imagine what
the problem is, a lot of times it's not as
difficult as people find it to be because you know,
of course they don't go around thinking about this all
the time. But when we go in and say, hey,
this is as simple as raising a toilet right, or
(23:21):
taking an attachment so that the toilet seat has raised
itself and it enabled someone in a wheelchair to do
what they have to do. Or a shower where you know,
you've got a bathtub and they may be able to
use a bench that you can install them instead of
having to tear out the whole thing. So a lot
of it is brainstorming a solution, brandstorming into a solution
that doesn't oftentimes cost as much as people think it does.
(23:44):
They just have to sit down and listen and be
willing to you know, have that discussion. But yeah, we
do get some people who have to go there, you know,
they have to you know, make the extreme case because
they feel like they're not being hurt. And we don't
want people to be in that situation alone, right for sure.
Speaker 1 (24:01):
And I will say in regards to the bathtub with
the bench, I've done that and I learned on my
first time trying it, you need one of those fast
food heat lamps over you like, because those are those
are really difficult. You're nude on a cold bathtub before
(24:23):
the water gets high enough, you know, I imagine a shower. Yeah.
Speaker 2 (24:31):
Well, and some hotels will have benches that they can
give to guests, and but you have to know to
ask for it. Or if you go to a hotel
and they don't have to have a bathtub, you can
ask for you know, a bench where it's it's the
padded material that you can heat up. You know. I
don't know if I put a lamp on it, just
because you're talking about heat, but there are things you
(24:53):
can do to make it more comfortable for an individual.
Put a toiele down maybe things like that. So but yeah,
these are there are great discussions that we have oftentimes
in our circles, but we definitely need to broaden to
the general audience so that they know that this is
not as hard as we think it is. If we're
willing to talk about.
Speaker 1 (25:11):
It, Yeah for sure. Now, does your organization also offer
supportive things for the caregivers so that they have time
away from their caregiving responsibilities, or do you just encourage
that and kind of let them figure it out.
Speaker 2 (25:29):
Well. The great thing about our approach is that we
have caregivers talking to caregivers, and a lot of times
the first hurdle to overcome is this idea that it's
a burden, and we don't want caregivers to feel guilty
for needing the time away. Respite is built into the
caregiver experience, and we need to have caregivers know that
(25:53):
it's okay to leave your loved one with another caregiver.
In some cases, they might even appreciate it. Caregivers can
sometimes get to a point where the stress gets to
them and they need to rest, So we do encourage
caregivers to talk to other caregivers. In fact, we have
caregivers who are the information specialists for our hotline, and
(26:14):
so they'll be the ones that will intervene and talk
through some of the things that are top of mind
for folks in that circumstance, and then also connecting to
programs that offer risk bit opportunities for caregivers. In some cases,
you may just need a list of alternative caregivers that
can come in and work with your loved one for
a week and that person is not going to be
(26:36):
harm in some way, you know, So reputable alternative caregivers
temporarily is a good resource to offer and in some cases,
again for veterans to be able to even pay for
that in some instances. And so we definitely consider caregivers
an integral part of our mission, the same way Dana
(26:57):
Reeve was for Christopher on his mission.
Speaker 1 (27:01):
Yeah, that was a great story. I actually just recently
watched the documentary about the two of them. It was
really touching great. I know we're coming up close to
the end of our time. I wanted to give you
a chance to plug any websites that you have and
to tell us if we want to be supportive while
(27:22):
the government is shut down and encourage our lallmakers not
to cut funding, what do we do well?
Speaker 2 (27:27):
I think the most important thing is to become educated
to understand what it is we do exactly. You can
go to christopher read dot org and your listeners can
find a litany of information about not just what we
do for people with paralysis, but also what we're doing
in Washington, DC to educate everybody involved in this process
(27:50):
on the work that we undertake on behalf of the government. Again,
we're an extension of helping human services, and so without
this program, there would be no program, and we want
to acknowledge that and have people understand that this isn't
just you know, some charity where we're hoping to do
nice things. This is an essential aspect of the work
(28:10):
that the government does for its citizens, and so by
understanding that, we think that we're going to have people
better informed when they hear about the shutdown. At this point,
the application process has been paused, and fortunately we have
the resources to continue during the shutdown because the needs
(28:30):
don't stop. But we won't have finally to this until
Congress passes the bill and the President signs it and
the more educated folks are that understand why we're doing
the work that we're doing and why it continue. Then
we think that if they're inclined to do, you know,
work on our behalf as advocates and even as volunteers
(28:51):
in a community, then they'll be a better positioned to
do that. And that's what we care about at this point.
Speaker 1 (28:56):
Yeah, most definitely, and I'm sure it wouldn't hurt to
send a letter or any to each person's congress people
and just urge them to, you know, pay special attention.
I guess I would say.
Speaker 2 (29:09):
Yeah, this touches a lot of people.
Speaker 1 (29:11):
Yeah, a lot, a lot. Well, I know we need
to part ways now, but I wanted to tell you
thank you so much for being willing to share your
experience because I know that can be a vulnerable thing,
And thank you so much for sharing the mission that
you're on and ways that we can support you.
Speaker 2 (29:32):
It's been my pleasure and thank you for this opportunity.
Speaker 1 (29:35):
I hope you've enjoyed today's show. Thanks for tuning into
the show on your favorite local radio station. You can
now listen to this show or past shows through the
iheartapp or on iHeart dot com. Just search for Virginia
Focus under podcasts. I'm Rebecca Hughes with the Virginia News Network,
and I'll be here next week on Virginia Focus.
Involved. Welcome to Virginia Focus. I'm Rebecca Hughes of the
Virginia News Network. If you were to suffer a spinal
cord injury and subsequent paralysis, would you know where to turn?
Thousands of individuals with paralysis and their families across the
country or watching Congress to see if critical services will
(00:22):
be included in the budget. On this episode, we're going
to discuss how the Christopher and Dana Reeves Foundation helps
people with paralysis live independently and learn how people can
connect with those essential support services. Let's meet Sherman Gilliams, Junior,
a former Marine and the senior director of Public Policy
and Advocacy. Welcome to the show, mister Gilliams. It's nice
(00:44):
to meet you and I'm anxious to talk to you
about this topic.
Speaker 2 (00:48):
Thank you for the opportunity.
Speaker 1 (00:50):
So why don't you start by telling us what do
you do? I've got your title, but what do you
do for the Christopher and Dana Reeves Foundation.
Speaker 2 (00:59):
Well, it's worth mentioning that I am a person who
lives with prolyssis. I incurred a spinal cord injury while
serving in the Marine Corps back in two thousand and two.
So initially I was a beneficiary of the work that
the Refoundation does. Their intervention early on helped me make
the decisions about my care and about my prospects for
(01:19):
living after I left rehabilitation. So I've been a fan
of the organization for a long time, and in fact,
when I worked for Paralyzed Veterans of America as the
executive director, we had great partnership with the Refoundation on
a few projects, one of them being helping veterans with
prolyssis fine employment. The other was a big project, a
(01:42):
nationwide project where we sought to help the emergency rooms
better understand the unique needs of people with proalysis in
case they showed up in an emergency room and to
avoid some of the medical errors that were common. So
long before I became an employee, I was a big
proponent of work in the mission. But now I'm the
(02:03):
senior director of Public Policy and Advocacy, which means that
it's my job to ensure that our elected leaders remain
informed not just about how their decisions impact people with proalyssis,
but also what decisions they need to make to positively
impact the lives of people with as well. As caregivers
(02:26):
and the litany of other people that provide support to
that population.
Speaker 1 (02:30):
Okay, I will be honest with you. I haven't had
a whole lot of experience with people with paralysis. I
mean I have a couple of you know, friends of
friends and stuff like that. Why don't we start with
talking about kind of what you just mentioned, some of
the things that you've advocated for, and you said, you know,
(02:51):
in emergency rooms there were things that needed to be done.
I assume that would also be true for police and
fire and stuff like that too. Why don't we talk
a little bit about those things just so people can
understand what makes this so important.
Speaker 2 (03:05):
Sure, and it's not uncommon to encounter people who don't
have an experience like that. I when I got injured,
I didn't know anybody with a spankre injury. In fact,
my only exposure was Christopher Reeve. Ironically, he was the
one who, when I was a kid, was Superman, of course,
and when he was injured it affected a lot of people.
I was personally affected as a kid who wondered, well,
(03:28):
what does this mean? What does this mean when somebody's paralyzed?
And you know, he was very public about his journey
through the experience and some of the frustrations that he
and Dana Reeve, who is his primary character and spouse,
what they encountered, and it's the reason why they idealized
a National Paralysis Resource Center. But the problem they address
(03:50):
started in two thousand and two, which is when the
center was established. PROALYSS effects an estimated five point four
million Americans with spinal cord injury primarily, and we are
talking about people who are injured primarily in car accidents
and falls and things like that, but there are also
people who live with multiple scrosis, Lucarius disease, sooldure, and
(04:13):
with developmental disabilities, aging adults with strokes and things like that.
So there are a lot of people that come into
this probably not even thinking about it as a as
a being a part of a paralysis community, if you will.
So if you know somebody who's had a stroke, where
if you know somebody who's taking care of a child
with unique needs, then you probably know somebody who has
(04:35):
encountered this issue that a lot of caregivers face, of
course involuntarily. You know, they're affected just like the individualists,
but they're the ones who have the responsibility of providing
all the you know, the care and making the right
decisions on behalf of somebody who is going to one
hundred percent rely on that person's ability to know what
(04:58):
to do, and they often don't know what to do.
And so what was missing was a resource to be
that first option or that, you know, if the last
option is the best option to call? And what should
I do when my kid, you know who may have
you know, dived into a pool and now he's a
broken neck and has got to live. But how do
(05:19):
I do that? What does that look like exactly? And
so we try to take the mystery out of what
it means to live with hispina, cord injury or paralysis
for people who take care of the individuals, but also
the individuals themselves. So that sort of frames, you know,
sort of why this was necessary in the first place.
Speaker 1 (05:37):
Okay, and I assume that that what you're talking about
on the journey is not just how to deal physically,
but also in a mental capacity and emotionally.
Speaker 2 (05:47):
Right, Well, that's the part that's often underregarded. Isolation is
a major problem in this community, where people either can't
get out of their house because they physically don't have
the ability to navigate the surrounding community or mentally they're
not prepared to. You know, I think I've probably isolated
(06:10):
myself a lot more on the front end, largely because
I didn't know how society would receive me. I didn't
know how it be viewed. At the time, I was
twenty nine years old, I was a commissioned officer. I
had done a lot of great things, but all that
seemed to go away when I was in the hospital
with this Philadelphia colerad trying to figure out what is
(06:30):
this going to look like. I also had a two
year old daughter, who you know, required me to continue
to be a father. Today she's in the Marine Corps.
Very proud of her. She followed my tradition, but back
then she was just a little kid, and she needed
me to get back on my feet figuratively speaking. And
so I spent a lot of time, with the help
(06:52):
of the refoundation, in those resources, looking at what was
possible and then striving to move toward that. But that's
a mental leap that requires a lot of having the
right people around you in your ear telling you the
things you need to hear. One question, we don't want
to hear is when are you going to walk again? Right?
The one question we want to hear is how can
(07:12):
I help you? Or can I go, you know, buy
something at the grocery store for you so you can
focus on, you know, the things you need to focus on. So, yeah,
having the right support but also being in the right
head space is real critical. The great thing is I
understand how I felt for me to be in that space,
and so I understand when I encounter somebody who's a
(07:33):
new injury, and I've done this a lot, I know
where their head is, or at least have a suspicion
where the head might be. And we can help people
move through that because we understand it well.
Speaker 1 (07:44):
First off, who wrong? You know? That's awesome that she
follows your footsteps. That's great, that's really great. Yeah, I
can I can only imagine that. You know, people who've
been there are the only people who can help those
who are new to that world. And I appreciate you
sharing all of that with us, because I'm sure it
(08:06):
was not an easy thing to go through yourself. I
know what we're talking about today is you know the
threat of federal funding being cut. Of course, until there's
a vote. We don't know if that's the case, but
do we have any any indication of how much of
that funding could be cut or you know, I mean,
(08:29):
surely not all of it, but you know what would
that look like?
Speaker 2 (08:33):
Right? Well, that's why it's important for me to come
on to your air today, because I think a lot
of this is about educating not just our lawmakers, but
the American people and why this is important. All these
decisions are being contemplated in a vacuum, oftentimes when they
don't have the benefit of understanding what exactly are the
downstream consequences. The National Process Resource Center is a federally
(08:56):
funded program through a competitive grant process, so we've had
to show our work over the years to have this
renewed every time, and it's been renewed every time on
a bipartisan basis. We've enjoyed support of every administration in
the White House since two thousand and two, as well
as the Congress, and most recently we did have the
(09:18):
House and Senate Committee's vote in favor of funding the
National Paralysis Resource Center for fiscal year twenty twenty six,
which reflects the faith that the American people have in
our work and the years of trust that we've been
able to established. But as you said, nothing will be
final until the entire Congress volks and passes a build
(09:38):
and the President signs it. And that's why we want
to use this shutdown period to fill the void with
information about what they'll be talking about relative to our mission,
in addition to the other things that will frankly distract
from what we're doing if people don't have a moment
to sit down and hear it. So this is a
(09:59):
real important conversation for us to have at this time
before there's a vote, so that they can make an
informed decision when the vote comes.
Speaker 1 (10:07):
Yeah, most definitely. Now are those grants through Medicaid and Medicare?
Are they separate from that and through AHHS in some
other way.
Speaker 2 (10:18):
It's not related to Medicare and Medicaid, but at this
funded through the Department of Helping Human Services as an
extension of their administration for Community Living. There is an
agency that's set up to ensure that people in communities
in the aging and disability communities have resources. The problem
(10:38):
with paralysis is you can't treat it like every other disability.
It's not like somebody who is older and maybe has
some arthritis in our legs and therefore need a wheelchair.
Prolysis has an entirely different effect on the entire body,
and so having people access those services without the benefit
(11:00):
of a competency in paralysis and the unique needs means
that you're going to get basic services that don't really
address things that are specific to your circumstance. And so
the Administration for Community Living use this the refoundation as
an extension of its mission of enabling community living for
(11:23):
people with paralysis, and so we've been funded as an
extension of ACL to do that work. And since that time,
again we've had to show our work and show the results.
But there isn't another national program that does the kind
of work that we do, and that's the problem. If
this program doesn't exist through the work that we do,
(11:45):
then it doesn't exist at all. And it takes us
back to two thousand and two circumstances where people were
basically relying on local communities to figure it out, with
no knowledge transfer or standards of excellence being shared across
the programs. And so we have that situation now where
we enjoy that, but we want to make sure that
(12:06):
that remains in place.
Speaker 1 (12:09):
Okay, I understand that I've worked in nonprofit before. When
I did it was through a local United Way. I
assume that the federal funding isn't the only funding. I mean,
do you get United Way funding? Do you have other
funding sources that might be able to help if the
(12:29):
federal funds, you know, start to decrease.
Speaker 2 (12:34):
Well, that's the scenario that fortunately I don't have to
contemplate through the work that I do now. But we
do enjoy support from the corporate sector. We've got a
lot of private donors who have supported this mission for
an awful long time. But again, this is a this
is a big mission to take on, and having you know,
donations here and there is great, But this isn't really
(12:58):
about the money. It's it's about the ability to do
the work that we do. And there isn't another way
that this has been replicated anywhere in the government. And
so in addition to the funding that we would need
to do the work, if this goes away, you just
don't have this resource available at all for anybody who
might be in a situation I was in back in
(13:19):
two thousand and two, and you'll have more situations where
we'll start to ask, well, what do we need to do, Well,
we need to have something like a process resource center.
Well that's what we have now, so why would we
would make that go away? So yeah, if we have
to figure out ways to do this work without the funding,
I guess that would be a task that will take on.
(13:40):
But at this point, it doesn't look like it's really
about losing the funding as much as it is about
reminding people about why it's here in the first place
and the work that we do. So I'm focused forward
on that at this point.
Speaker 1 (13:54):
Okay, that's good. I just wanted to make sure that
if you know, if you thought the threat of partial
or worst case scenario, all the funding was going to
be taken, that there was also work to pivot in
some way, whether that be local chapters in different states
and communities that you know, can drum up finance, you know, donations,
(14:17):
things like that or whatever, because, like you said, this
is something really important we don't need to lose it.
Can you walk us through what it's like if you
do have an injury when you contact your organization, you know,
let's say I make a phone call right then, what happens.
Speaker 2 (14:34):
Right, Well, the first person you'll probably talk to as
an information specialist through a hotline that undertakes the effort
to provide wrap around services that are specific to the
individual making the call. This one on one support is
important because that's the opportunity we have to customize what
(14:54):
we need. Right there's no one size fit all solution
to every situation, So we have to listen into the individual.
Where they live. Is it in a rural area, an
urban area, Is this a person who was older, younger?
Things like that, what's the you know, what's the state
of the caregiver caregiving situation? And once we do that,
we can begin to look at which resources are best
(15:17):
fitted for that situation. If the person's a veteran, we
have a Military and Veterans program that helps veterans navigate
all the red tape that they might be encountering in
health systems. In some cases, veterans are injured after service,
well after service, and they don't have a spinal cord
injury that happened while they were in uniform, and so
that's sort of a different problem that we have to
(15:38):
make sure that those folks are supported as well. We
also have a peer and family support program where the
person who is engaging, the individual making the call has
been through the situation before. Right, This reduces isolation. When
you pair people along lines of experiences that are similar,
(15:59):
you take the the feeling of being isolated out of
the dynamic and uh and improve health outcomes because people
feel better about what the future holds. The quality of
life grants enable us to spread our influence through the
mission of community based organizations that set up things like
adaptive sports programs and recreation opportunities. I remember what it
(16:22):
was like to go fishing again on an adapted boat,
you know, early in my injury, and and then feel
like I was connected to the community. And then finally
that process resource guide. It's the it's the Bible, and
it's the thing that contains all the dimensions of living
with paralysis that I found helpful and help me find
(16:42):
answers to questions I didn't even know to ask. And
so because we've anticipated what the needs of these folks are,
coupled with the ability to listen to them at a
time where they need to be heard, that presents a
more comprehensive approach to getting people on the right path
when they face the situation Okay.
Speaker 1 (17:01):
I love that, and I have to be honest, I
am curious. What are some of those questions that initially
you didn't know you needed to ask about just out
of curiosity.
Speaker 2 (17:14):
Yeah, this is this is really an important conversation because
it's an intimate conversation that I had with a lot
of young men who want to know can I start
a family? You know, at the time I was injured,
there were veterans coming back from a brock in Afghanistan,
and some of them are missing body parts. Some of them,
you know, were just in a very bad place mentally
(17:36):
until I had discussions with them about the possibility of
being able to have a family. You know, these are eighteen, nineteen,
twenty twenty year old young men and there weren't women there.
Otherwise I would mention women as well. I only engage men,
but there were you know, these are questions that are
pretty important to somebody was at that stage of life.
And then some of the more practical questions are, well,
(17:58):
you're telling me I can drive again, but what is
that look like? Like? How do I get back into
a car? What are the technologies and things like that,
So they have to see it in order to understand
that it's possible. We take them on outings. We take them,
like to a mall area and have them you know,
navigate the ATM machine on their own and paying a vendor,
you know, so that you don't always have people ignoring you,
(18:20):
referring to your caregiver when you're sitting right there to
speak for yourself. So those are the types of dynamics
that we anticipate happen to just about everyone. But then
the conversations get down to who the person is. We
know that there were people who have families already. If
you're a parent and you already have kids, your question
may be, well, how do I do this with a
(18:41):
you know, a child who hasn't seen me in this state?
How do I maintain that sort of parental stature? And
so those are conversations that are unique to the individual
and the circumstances. So we open the whole range of
you know, inquiries up for discussion and make people feel
like they're in a safe space to have conversations that
(19:03):
are pretty tough to have with people who don't understand
what they're going through.
Speaker 1 (19:07):
I love that, and I think that, like you pointed out,
it's really important for people who you know are in
a chair to feel like they have their own voice
and not have to refer to their caregiver and people
around them. And I love that you teach them to
get back to being assertive, you know, and don't allow
(19:29):
people to ignore you, because I think that would again
play into that mental health role if you didn't do
that right.
Speaker 2 (19:38):
Yeah, well, we fortunately, we've seen example after example of
people who have navigated life with a spot upord injury
and other paralyzing conditions like MS to know that they're
out there. We see actors, you know. Now we're seeing more,
you know, athletes that recover and become spokespersons for the mission.
(20:02):
So we're socializing a message that life isn't over, but
there's nothing like feeling it for yourself and living in
the circumstance that you feel like nobody else understands. And
it's important as early on to pull people out of
that slump because it affects how you approach rehab at
that point, or the enthusiasm that you apply to occupational
(20:27):
rehabilitation and things like that. So we want people to
feel like they're not alone, that somebody has been where
you are and We're going to jump back in the hole,
and if we can't pull you off through the top,
we're going to dig a tunnel our way and find
another way to get you through it. Because every experience
is different.
Speaker 1 (20:45):
I love that. That's so awesome. So let me ask you.
This is your organization, I assume so, but I'm gonna
ask anyway, just in case anybody listening is also wondering,
do you guys also help people when they have to
adapt their home, you know, because a lot of bathrooms
and things like that are just not on the scale
(21:05):
that needs to be for someone to in those situations.
Speaker 2 (21:11):
Well, those are the questions we get and in every
situation that's going to differ. We may be talking about
somebody who is renting and the question may be, you know,
can I make the landlord, you know, adapt the bathroom,
and it depends on you know, ordinances and state laws
and things like that. But you also may have somebody
who is moving and building a home, and we know,
(21:34):
for example, if it's a veteran, there are resources available
to get your home evaluated, and there are money set
aside to actually help put those adaptations in the home.
And there may be other state benefits county benefits in
the various rehabilitation offices that do the same, that help
(21:55):
people who are looking for employment have things like adapted
restaurant room so that they can get themselves ready for
work every day. You know, you've got to take a
shower and get clean and all that stuff. So it
kind of depends. And again, this is why we have
to have a national framework, because not every locality is
going to think about these things. And it's not until
we challenge the various communities to think about the benefits
(22:19):
of having a resource that helps people adapt a bathroom,
which you think is it's a basic human right right
to be able to use threshroom with dignity that's not
assumed in most places. And you have to have people
like us go in and educate the local communities and
various disability offices with the importance of having this specific
(22:42):
type of consultation available to the residents in a particular
count of your state.
Speaker 1 (22:48):
And I imagine you do it with way more finesse
than I would, because my philosophy would be I'm going
to bring in a portable toilet and tell you to
go ahead and use it. Go ahead right here in
the middle of the office.
Speaker 2 (22:59):
It's fine, well, well, the great well, the great well.
The great thing is, you know, when you imagine what
the problem is, a lot of times it's not as
difficult as people find it to be because you know,
of course they don't go around thinking about this all
the time. But when we go in and say, hey,
this is as simple as raising a toilet right, or
(23:21):
taking an attachment so that the toilet seat has raised
itself and it enabled someone in a wheelchair to do
what they have to do. Or a shower where you know,
you've got a bathtub and they may be able to
use a bench that you can install them instead of
having to tear out the whole thing. So a lot
of it is brainstorming a solution, brandstorming into a solution
that doesn't oftentimes cost as much as people think it does.
(23:44):
They just have to sit down and listen and be
willing to you know, have that discussion. But yeah, we
do get some people who have to go there, you know,
they have to you know, make the extreme case because
they feel like they're not being hurt. And we don't
want people to be in that situation alone, right for sure.
Speaker 1 (24:01):
And I will say in regards to the bathtub with
the bench, I've done that and I learned on my
first time trying it, you need one of those fast
food heat lamps over you like, because those are those
are really difficult. You're nude on a cold bathtub before
(24:23):
the water gets high enough, you know, I imagine a shower. Yeah.
Speaker 2 (24:31):
Well, and some hotels will have benches that they can
give to guests, and but you have to know to
ask for it. Or if you go to a hotel
and they don't have to have a bathtub, you can
ask for you know, a bench where it's it's the
padded material that you can heat up. You know. I
don't know if I put a lamp on it, just
because you're talking about heat, but there are things you
(24:53):
can do to make it more comfortable for an individual.
Put a toiele down maybe things like that. So but yeah,
these are there are great discussions that we have oftentimes
in our circles, but we definitely need to broaden to
the general audience so that they know that this is
not as hard as we think it is. If we're
willing to talk about.
Speaker 1 (25:11):
It, Yeah for sure. Now, does your organization also offer
supportive things for the caregivers so that they have time
away from their caregiving responsibilities, or do you just encourage
that and kind of let them figure it out.
Speaker 2 (25:29):
Well. The great thing about our approach is that we
have caregivers talking to caregivers, and a lot of times
the first hurdle to overcome is this idea that it's
a burden, and we don't want caregivers to feel guilty
for needing the time away. Respite is built into the
caregiver experience, and we need to have caregivers know that
(25:53):
it's okay to leave your loved one with another caregiver.
In some cases, they might even appreciate it. Caregivers can
sometimes get to a point where the stress gets to
them and they need to rest, So we do encourage
caregivers to talk to other caregivers. In fact, we have
caregivers who are the information specialists for our hotline, and
(26:14):
so they'll be the ones that will intervene and talk
through some of the things that are top of mind
for folks in that circumstance, and then also connecting to
programs that offer risk bit opportunities for caregivers. In some cases,
you may just need a list of alternative caregivers that
can come in and work with your loved one for
a week and that person is not going to be
(26:36):
harm in some way, you know, So reputable alternative caregivers
temporarily is a good resource to offer and in some cases,
again for veterans to be able to even pay for
that in some instances. And so we definitely consider caregivers
an integral part of our mission, the same way Dana
(26:57):
Reeve was for Christopher on his mission.
Speaker 1 (27:01):
Yeah, that was a great story. I actually just recently
watched the documentary about the two of them. It was
really touching great. I know we're coming up close to
the end of our time. I wanted to give you
a chance to plug any websites that you have and
to tell us if we want to be supportive while
(27:22):
the government is shut down and encourage our lallmakers not
to cut funding, what do we do well?
Speaker 2 (27:27):
I think the most important thing is to become educated
to understand what it is we do exactly. You can
go to christopher read dot org and your listeners can
find a litany of information about not just what we
do for people with paralysis, but also what we're doing
in Washington, DC to educate everybody involved in this process
(27:50):
on the work that we undertake on behalf of the government. Again,
we're an extension of helping human services, and so without
this program, there would be no program, and we want
to acknowledge that and have people understand that this isn't
just you know, some charity where we're hoping to do
nice things. This is an essential aspect of the work
(28:10):
that the government does for its citizens, and so by
understanding that, we think that we're going to have people
better informed when they hear about the shutdown. At this point,
the application process has been paused, and fortunately we have
the resources to continue during the shutdown because the needs
(28:30):
don't stop. But we won't have finally to this until
Congress passes the bill and the President signs it and
the more educated folks are that understand why we're doing
the work that we're doing and why it continue. Then
we think that if they're inclined to do, you know,
work on our behalf as advocates and even as volunteers
(28:51):
in a community, then they'll be a better positioned to
do that. And that's what we care about at this point.
Speaker 1 (28:56):
Yeah, most definitely, and I'm sure it wouldn't hurt to
send a letter or any to each person's congress people
and just urge them to, you know, pay special attention.
I guess I would say.
Speaker 2 (29:09):
Yeah, this touches a lot of people.
Speaker 1 (29:11):
Yeah, a lot, a lot. Well, I know we need
to part ways now, but I wanted to tell you
thank you so much for being willing to share your
experience because I know that can be a vulnerable thing,
And thank you so much for sharing the mission that
you're on and ways that we can support you.
Speaker 2 (29:32):
It's been my pleasure and thank you for this opportunity.
Speaker 1 (29:35):
I hope you've enjoyed today's show. Thanks for tuning into
the show on your favorite local radio station. You can
now listen to this show or past shows through the
iheartapp or on iHeart dot com. Just search for Virginia
Focus under podcasts. I'm Rebecca Hughes with the Virginia News Network,
and I'll be here next week on Virginia Focus.
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