This podcast episode features an enlightening discussion with Rick Hayden, the founder of Spinal Network, who expounds upon his journey from sustaining a spinal cord injury to establishing a vital support network for individuals with disabilities. He articulates the necessity of fostering community connections, emphasizing that adaptive recreation extends beyond sports to encompass diverse activities that promote socialization and personal growth. Furthermore, Hayden shares valuable insights regarding the evolution of resources and support systems available to the disability community, highlighting the importance of peer mentoring and inclusive programming. As we navigate through the nuances of disability advocacy, we are reminded of the resilience and adaptability that characterize the human spirit. Join us as we explore these profound themes and the vital role of community in enhancing the lives of those with disabilities.

The journey of a 68-year-old individual with cerebral palsy, who shares profound insights from his life experiences, serves as the focal point of this episode. He elaborates on the pivotal role of his service dog and his employment at Wal-Mart, illustrating how these elements have significantly influenced his daily existence. Through his narrative, we gain a deeper understanding of the challenges and triumphs faced by individuals in the disability community. His reflections not only resonate with those who share similar experiences but also provide invaluable lessons for society at large. Join us as we delve into a story that embodies resilience, companionship, and the quest for inclusion.

The episode serves as a poignant exploration of disability through the lens of personal experiences shared by Doug Vincent and Addie Rich. They articulate the complexities of navigating life with disabilities while advocating for greater awareness and support for the disability community. A particular highlight of the episode involves the recounting of a recent gala event, where the unexpected success in fundraising for Girls Inc. exemplifies community solidarity and the impactful work being done to uplift marginalized voices. The hosts further engage in a dialogue about the importance of visibility and representation in various spheres, including social events, where individuals with disabilities often find themselves in the limelight. Their candid reflections on personal growth and societal perceptions reveal a desire not only for acceptance but for a comprehensive redefinition of what it means to live with a disability, ultimately fostering a more inclusive environment for all.

Takeaways:

• The podcast serves as a platform to amplify the voices of the disability community, fostering inclusivity and awareness.
• Rick Hayden's journey illustrates the importance of resilience and adaptation following a life-altering injury.
• The discussion highlights the significance of community support and peer mentorship in navigating the challenges of disability.
• Future plans for Spinal Network include developing youth programs to enhance resources for younger individuals with disabilities.
• The hosts emphasize the transformative power of social gatherings in providing a sense of belonging and connection within the disability community.
• The podcast underscores the ongoing need for advocacy and resource availability for people with disabilities, addressing issues such as food insecurity.

Links referenced in this episode:

• [email protected]
• spinal-network.org

Companies mentioned in this episode:

• Girls Inc.
• Sonopar
• Spinal Network
• Aguiar Professional Training
• United Spinal Association
• Everest and Jennings
• SCI Boston

The following is a productions original series.

Hello and welcome to Walk and Roll Live.

I am Doug Vincent along with Addie Rich.

Our podcast is dedicated to amplifying the voices of the disability community.

I am a polio survivor and Addie has CP still.

Yes.

We've got some more guests coming up with cp, so we'll.

I know we will.

We just kind of hit a tear of CP or.

Yeah, we'll explore that.

We all exchanged business cards and said, okay, pretend like we don't know each other.

So did you have a good week?

I did.

I did.

It was.

It began.

Thus began my terror of doing things.

A month or two or.

Yeah, like a month and a half.

Let's say September is pretty much a blow through.

Yeah.

With lots of traveling coming up.

Tomorrow I leave for Charleston for work to represent my erg, which is the employee resource group, adapt.

That's.

And we get to present.

Basically, we're presenting to the parent company and proving to them why it's a good idea to continue to give us money and, like, show, you know, what we've done for the organization as a whole.

There was a lot of pictures over social media this weekend.

Were those pictures from your event?

So plot twist.

I changed.

I moved my event because I didn't have a lot of signups and I got invited on behalf of another erg to go to girls, the Girls Inc. 50th anniversary gala.

Oh, okay.

Another one of these.

Oh, it's super fancy, super black tie.

Never been to a black tie event.

Felt very claustrophobic in my clothes, but everybody was like, you look so pretty.

And they would say, what a nice dress.

And then I go, just kidding, it's pants.

And then everybody was so much more excited about it.

But it was very cool.

We raised a lot of money.

Their goal was $40,000 and they raised 105,000.

Wow.

So it was a plated dinner and they had like a little kind of like you do with antithesis.

They did like a casino night.

Pre plated dinner and then the plated dinner.

They awarded scholarships.

And when the SNAP program was cut earlier, they took over a lot of the SNAP program here in Georgia for the families that they serve through Girls Inc.

Which Girls Inc. Is like a mentorship for women to encourage them to grow into girls and women that, you know, get civilly involved in all those things.

And it serves a lot of neighborhoods that don't have these socioeconomics that others.

So really super worthy.

Cause I got to go and represent Sonopar as a whole and and that was cool.

And like I say, they were going for 40,000 and they had 105.

The last time I checked.

They must have been floored.

Yeah, it was really, it was amazing and, and really cool people.

Lots of good networking.

But I went all by myself and I was the only one with wheels.

So, you know, I'm getting good at sticking out and being okay with it.

It's all right.

Yeah.

But like anything, you just get used to it, you know?

Yes.

For sure.

After a while, you won notice.

I know.

I'm like, oh, oops, it's just me.

Okay.

But the interesting thing I will say, which was a unique experience, a double edged experience.

I go like, they have a little red carpet area to like pull up and take your picture.

Right.

And the photographer says, would you like me to hide your chair?

Like how he was going to take the picture, I guess was an angle that it wouldn't be so obvious.

And I was in a chair and I was like, no, thank you.

I would like the full picture because it's all me.

Yeah.

And that was a powerful moment for me.

Absolutely.

Because normally I was the person who would be elated that they brought it up and I didn't have to be awkward about the angle.

Yeah.

So that was a unique experience to have someone automatically ask if I would like it hidden and then reply that I would not like it hidden.

I saw so much growth in myself.

So what do you.

I'm trying to decide in my own mind whether that was, I hate to say offensive.

I'm not really offended by very much, but is that an appropriate question to ask or not?

It was unique.

It was a bit of a stunner.

But I also stunned myself with my answer.

So it was like a one, two punch of which I delivered the second half because it really was a moment to be like, I could have been like, how rude and like gone off on the guy or I could have just been graceful and did what I tried to do and say, no, this is all me, just take the picture.

Plus there's a lesson that you taught him in that answer too.

I mean, I hope so.

Yeah, I hope so.

Yeah.

But anyway, let's hear about your week.

How was your week?

Nothing too exciting.

No big galas.

My birthday, My birthday continued.

You know, I went to dinner with the.

Our Tuesday night dinner group and you know, they made sure that they knew and they got me an ice cream and all that.

Oh, amazing.

And what else?

Oh, I went to some friends.

Well, you know, the agars with the.

Our Professional training.

We try to get together two or three times a year, and it's tough.

You know, they're very busy.

Of course I'm busy.

So we had a nice dinner and some more ice cream and.

Nice.

Yeah.

So Doug's ice cream coming through.

I love it.

And I'm trying to think.

Yeah, no, you know, just the usual stuff.

We had a board meeting this week for only.

Sorry.

You know, you're talking about the food needs and, you know, when.

Yes.

Snap was.

Was cut.

Well, Rolling Start's been doing this for a while.

It was something that they didn't do when I was there as a interim executive director, but they started doing food giveaways, and they do that twice a week.

That's amazing.

A lot of people coming in and, you know, and there's a bunch.

That was one of the reasons why I think it's important to talk about.

I mean, you volunteer at the food pantry.

Rolling Start does that.

Like, there are a lot of people that have food insecurity, and if there's anything we can do as a society to continue to raise those concerns, it's important to do.

Yeah.

And that's one of the things that, you know, Betty over at Volunteers for Veterans is.

Does a great job at, you know, because she'll get things and then she'll share them with other organizations that are doing things similar to us with either churches or.

Or whatnot.

And when they get a lot of stuff, they share it with us, and we make sure there's enough for.

For everybody, you know, that's the goal.

So it takes a village.

Yeah.

Yeah.

Takes a village around the world.

And it's been hot here, but it's starting to cool off.

Yeah.

You know, like.

Glad it's starting to cool off.

I think last week I saw a 111 at some point.

Oh, my golly, no.

About the hottest I think I've ever seen.

It was 115.

No, it's.

Yeah.

There's no getting away from it.

I mean, it's not like you can roll down your window and it's just a blast that comes in.

Yeah, yeah, yeah, yeah, yeah, yeah.

Yes.

So thank you to Sebastian Yagubi for coming in and.

And chatting about everything that he's working on and, you know, doing the adaptive camping thing and got me inspired and.

And hopefully you and I.

It inspired me to put a bunch of stuff.

That's one of the things that.

I'm glad I thought of that.

That's one of the things I spent a lot of time this Last week is Fight, because I'll go through social media and I find groups that are doing adaptive sports or.

Right.

You know, whatever across the country.

So I always save them and then I'll put them on our events page if they're doing an event or I put them on the resource page.

So I must have added easily 10 to 15 things, you know, pumping it up, guys.

Yeah, yeah, yeah.

If you're looking for, like, travel stuff or you name it, and if there's some things.

And I've gotten a couple of emails from people, people that, you know, would like to share their resources on ours, and I'm like, yeah, sure, you know, just let me know exactly, you know, what's the best way to do that.

So we're kind of working on that.

So today we've got Rick Hayden.

He is the founder of Spinal Network out in, like, the Palm Springs area.

The desert they call the low desert, I think that's what they call it.

But, yeah, so he comes and tells us all about what he's doing, I think.

I don't want to speak.

Do you remember were they doing food stuff, too?

Seems like they had some program.

I don't remember exactly, but, I mean, they've done a lot of tremendous things and they.

They are all about community, just like us.

So it was a great interview.

Yeah, yeah.

So we'll find out all the details right after we take a quick break.

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From the Agar Professional Training Studio, you're listening to Walk and Roll live.

Some are walking, some are rolling Everyone has a story to tell.

Through the.

Struggles and the victories through the mountains and the valleys as well a microphone,.

An open heart a conversation comes alive and every week we're reminded we're more alike than we realize so keep on keeping on don't stop believing There's a light inside us all Every voice, every journey every dream worth reaching Together we stand tall from tears to laughter.

Hope survives one story at a time.

We're building bridges, Angel Eyes here on Walking Roll.

And welcome back to Walk and Roll live.

And today we have Rick Hayden.

He's the founder of Spinal Network in Southern California.

We'll find out how much geographic area he covers here in a little bit.

But welcome Rick.

Thank you for joining us.

Thank you, thank you.

You know, I've been excited waiting for this day to happen.

Ah, good, good.

That's what we like to hear.

So this seems to be kind of a common theme.

You know, somebody gets injured and that motivates them to start a non profit and try to give back, which I love.

So you're definitely invested.

So before we get to know all about Spinal Network, I figured we'd find out about Rick.

So tell us about, you know, life pre injury and the injury and kind of how that day happened and, and go from there.

Yeah, there's, you know, when in retrospect there's only a small part of my life that was pre injury.

You know, I mean, not long out of high school and, and all.

I could, I could try to dress it up, but it still ends up not being a very cool story.

It's just one of these weird happenings and, and, and so,.

Yeah, so it wasn't like something celebrating siding like racing.

It was a, like a recreationally riding or.

Oh yeah, it was straight.

I was on the street.

Yeah.

Just going from work to home.

Yeah, it was on a four lane bridge and, and just the person in front didn't have brake lights and.

Oh shoot, we weren't going really quick anyway.

And you know, back east they have these expansion girders in the bridges and so you know, I tapped the brakes and of course the rear tire happened to be on.

That happened and so the bike skipped a little bit.

So you know, you know, just that quick right of riding of the bike and, and went to go around and my right turn signal hit the left rear quarter panel.

Oh no.

Yeah.

And it was A big Honda 750 four cylinder probably.

It, you know, weighed twice what I did.

And so the bike stopped and I went flying over and there was one car coming the other way.

Oh man.

Into that double.

You know, it's interesting through the years how people go, don't you wish you could go back to that one point of time in time and change that.

And looking back, you know, several years later, I. I said no.

You know, and then they look at you like, oh, my gosh, this guy still hasn't dealt with that.

But.

Right.

These things where if everything changed from that point forward, then.

Then all that happened.

Wouldn't have happened.

Yeah.

You know, I've.

I. I got to work in an industry that I really loved for 32 years.

You know, we've been.

My wife and I've been married for coming up on 39 years.

You know, my kids, grandkids.

No.

You know,.

I don't want to.

I don't want to, you know, pass over that too quickly, because I think that's an important message that anybody that's maybe dealing with a new injury now or struggling with something they've had for even a few years is, you know, and I've heard that a number of times on this program where people wouldn't change a thing, you know, and I think they've accepted it, which I think could be very difficult to do.

But once you do, you know, life is.

Can be wonderful.

And it's, you know, only how you get around is the only difference.

You're seated instead of standing or whatever.

Yeah.

I mean, it's one of those things, I don't know.

Happens to me, and I'm sure it happens to you, Doug, when people go, well, what if you weren't disabled?

What would you not want to be disabled?

Like, would you give that.

No, I would like to wear high heels.

I would like to drive.

That is the only thing.

Like, I don't ever say, I don't want cp.

I say, I would like these small tweaks, and then we'd be, you know, and high heels are overrated anyways.

Driving not so much.

Used to be when I years ago is the only thing I really missed, I would tell people is, you know, I want to try skiing.

I wish I could try skiing.

And then, you know, at some point, that happened, you know, so.

And I loved it.

So.

Yeah.

Yeah.

I. I can't imagine giving up, you know, like.

Like you say, Rick, you know, family and, you know, grandkids and all of that stuff.

Yeah.

I don't know.

But at 21, it is a big change not to not acknowledge that.

Right.

So, like, obviously, that wasn't the life you were planning.

You were just trying to get home.

Yeah.

So how was it in the moment?

Sorry.

Yeah.

You know.

You know, it's.

And this was back in Massachusetts, by the way, in Western Mass.

Where I grew up and you know, life was just, life really wasn't heading, I take it back, I wasn't heading in, in, you know, a direction that I probably over time wouldn't have been, you know, a good path to be following.

So at the time, so, you know, it was certainly a little gentle kick in the backside and, and you know, I just, it was put, to me, this is.

You've just been dealt a whole new, you know, hand.

You can play it out or you can fold.

Those are, those are the two choices.

There isn't a, there's no in between choice.

And, and they, they put me in touch with this great organization back in, in Western Massachusetts, the Stavros Foundation.

St. Vros.

Stavros Foundation.

And they did, were doing, they had some peer mentors, mentors.

And, and they connected me with Larry Lajoy, who was this, you know, 6, 4, 235 pound, deep, booming voice, you know, hands like ham hocks.

And, you know, they connected me with him.

We became best friends until the day he passed.

And yeah, he, he showed me the ropes.

And here's how, here's how you go, you know, up and down curbs and, and stairs and escalators and all that stuff.

And, and, and if I could just throw in a, a real quick but kind of a funny story.

So he was trying to show me how to go off this curb.

And so I popped the wheelie in him there.

And finally I said, you know, I don't think so.

She said, okay.

So he went down the rampart.

He was heading to the car and I said, oh, you know, maybe I can pop the wheelie cut on there.

And it's like you're rocking back and forth and instead of going both wheels the same time, one wheel went, then the other way went.

So I landed and chair rocked and right.

I went over.

He turns around and just starts laughing.

What in the world?

So, you know, and I'm sitting there going, yeah, I know.

And in the middle of all this, me getting my chair up and getting back in this car pulls up and I think, oh, they're gonna jump out and help girls window down.

He goes, hey, can you give me directions?

I'm trying to find this place.

And I'm sitting there looking like I'm, I'm sitting on the ground.

We got my chair next to me.

Larry's in his chair.

This guy stops, doesn't want to help.

He just wants directions.

Yeah, you're like, I've never felt so unseen and seen in my Life.

Well, that's like, early pioneer of equality right there.

Right?

That's funny.

How was.

How was rehab back in those days?

Because, I mean, we hear a lot of stories of what rehab is like and all the different places you could go or be at.

So I'm curious, taking us back in time, what was rehab like in this, before there was a me?

Well, they sent me to Tufts.

Tufts in Boston because they thought I had an aortic aneurysm, which I didn't.

But, you know, so that was 90 miles from home.

So I had family and friends every single day driving out, see me.

So when it came to make the decision on where to rehab, I thought if I stay out here, you know, somebody is going to, you know, just be making that drive home, and they're tired, maybe fall asleep, and something could happen that I wouldn't want to happen to anybody.

So.

So I made the decision to go back to Western Mass.

And they had no.

There were no spinal cord injury rehabs in Western Mass.

So I was actually at a.

A stroke facility.

I was the third cord injury that they had ever seen.

And.

But the physiatrist that was there, Dr. Park, he was new there, but he and I just connected.

He was great.

He was great.

I mean, it just.

And I had a great social worker there, too.

So, you know, I don't regret that decision.

I learned what I needed to learn, and then when I was discharged, I learned everything else, and.

Amazing.

That sounds pretty typical back then.

Yeah.

Yeah.

It also sounds pretty typical now because.

They're like, okay, yeah, definitely.

That's getting out of here.

Yeah, you're out of here, and, you know, you're out in three weeks.

Yeah.

Regardless of what you're, you know, what level entry.

I mean, people are going home without their equipment, you know.

You know, and if you're a C4, C5 quad and.

And, you know, you're getting the boot and you don't have your equipment, seems.

To be more of a decision made by what level of insurance you have rather than your need.

Right, yes.

Which is.

Which is in the whole funding thing, and.

And which is all part of the equipment side of things, because that's what I.

That's what I was doing in the industry.

I worked.

I've been in marketing and management.

I'd worked in the VA for a couple years, and it.

At the tail end, I was consulting with a medical dealer, so I was doing the wheelchair assessments, the seating assessments, and, you know, getting the paperwork together for funding.

And, yeah, it became so difficult to get people the equipment they really needed.

So I finally said, I just, it's time to leave.

So I left and, and started Spinal Network.

And what was the, like, top priority?

What was that?

Like a mission in the beginning?

Yeah, in the very beginning, the top.

Priority was me figuring out what is a nonprofit and where.

And where do I get the money.

So, so, so now I've figured out what a nonprofit is, but I'm still trying to figure out where's the money.

So.

Right.

All these years later, perpetual game.

But you really.

Our primary goal then and still is to build community.

You know, to build a place where people can, whether it be virtual or in person, you know, people can go feel safe, feel like they're not being judged.

A place where they can socialize and, and they can build on their own support network and, and a place where they can go to get answers to questions.

You know, just.

It doesn't have to be someone who's new.

I mean, there's people that have been injured 20 years and 30 years, and they're still asking questions because the, the landscape is constantly changing, you know, so with regard to resources and funding and, and whether the ADA is, you know, completely intact or partially intact or.

And on and on.

So,.

So before we ever did that, though.

Yeah, go ahead.

You went to school and you set a goal for yourself of getting some college degrees because when you're injured, you're 21, right.

So you decided to go back to school after injury.

We can get you to who you.

Who made.

Okay, yeah, yeah, I did.

I had a chance to go, to go to college, and so I took full advantage of that.

I went to a community college because I didn't know what I wanted to do and spent three years, two year school because I was taking classes all over the place.

I, at one point I was going to do soil conservation.

Another time I was going to do, you know, anything but what the department of Rehabilitation told me I could do, which was bench work, electronics or accounting.

Those were my two choices and my rehab counselor.

I mean, to this day, as, as time went on, we really became friends and, and he, he went to bat for me when I was.

Because when I got out of there, I realized, oh, what I want to do, I want to be a PE teacher and rehab.

And he's going, he goes, oh, my gosh, Rick.

He goes, you're killing me here.

So, but, but.

So I went to Springfield College and got my degree in, in physical education with a focus on adaptive PE and exercise physiology.

That's pretty rad.

That's cool.

So.

But when you get out and you enter the teaching world, back then, you're making $15,000, you're getting paid $500 to coach per season.

So I, I was coaching football, basketball and tennis.

Yeah.

And then I was working the summer job to make ends meet, which was great because that's where I met my wife.

We were both at the same summer camp, so.

So I went back to school and got a degree in business.

And I was really able to.

To combine the two.

The anatomy and physiologies part and exercise physiology part from the first, you know, with the marketing management from the second degree.

And that carried me through 32 years in that industry.

And so what did you do during that 32 years?

What was a variety of things.

But you were kind of rehab healthcare.

I started.

I was hired on by a wheelchair company that most people don't remember.

Everest and Jennings, except for those of us who've been around for a while.

But I was hired.

I was hired to.

In marketing to launch a new product line.

So then I went into sales and I went to work for the VA and worked in San Diego VA and then the Long beach va, the Spinal Cord injury unit in prosthetic and sensory aid service.

Then I left.

I guess I just would get antsy, you know, and what's the next exciting thing?

And it was a wheelchair company that they were doing carbon fiber wheelchair frames, and it was medical composite technology.

So I went to.

I left the va, went to work with them, and who came about to buy them, but Everest and Jennings.

With Everest in Jennings, I did that for a while, but then I did just some consulting work before I realized I hadn't worked on the dealer side.

So for 10 years, I, I did some work with a company in Palm Springs that I had known the owner for a while.

So I was out doing the.

You know, the focus really was on custom seating and mobility.

Yeah.

So, you know, and interesting enough, I probably.

And at 10 years, probably did five ultralight rigid frames.

It was really manual tilt and space with custom seating, you know, for the folks that we were working with.

So.

But then, yeah, the, the.

When the.

When funding really began to tighten up and you couldn't get people what they needed is when I made that decision to, to leave and do something different.

And that was the inception of Spinal Network.

Yeah.

So it was.

That was my next question.

What.

What kind of transformed or what happened to make you, you know, start this whole endeavor?

So I think I get it.

Yeah.

You feel like you were filling a hole that was there in the market.

Yeah.

And, and originally I was looking at, oh, we'll provide resources and services for these four counties before realizing, you know, there's no way that we, we have the bandwidth.

I should wait.

There was no way I had the bandwidth to, to do.

To cover photos.

So eventually we really narrowed it down where we really focus on San Diego County.

I don't even live in the county.

I'm in southwest Riverside County.

But, but you know, it's an hour drive for me to get down to downtown San Diego.

That's.

Which is nothing.

So, so we, you know, and we still, it's.

It's the focus is on the county.

And you know, we have monthly recurring events.

We collaborate with other organizations on bigger events and we have resources, peer, one on one peer mentoring, peer support groups that we don't call support groups any longer because, you know, people don't need support.

What do you call them?

So it, we call it.

It's our Monday hangout.

Oh, you just title it a hangout?

Yeah, I like it.

And the same people come and we do the same thing that we, that we were doing before.

And the people that said they didn't need support groups show up and we do 2 of those a month, first and third Monday of the month.

And we offer.

On the second Monday, we offer a family caregiver support group.

Oh, cool.

We have a retired licensed social worker, Richard Green, who runs that and does a great job with that.

And so, yeah, that's some of the.

Things I may steal that.

Rick, just last month I volunteer at Rolling Start here in San Bernardino.

We have a wheelchair support group, but last month we had a discussion.

Didn't really like the name.

I'll throw that out next month and see what happens.

Yeah, yeah, yeah.

But so just to back up and let the audience kind of know now, you've been around for a while because we said, okay, you quit doing that and then started this.

So we're now in year 11.

We didn't start it a year ago.

It wasn't a pandemic thing.

This was all pre pandemic when you decided this was happening.

And honestly, as Doug and I were talking a little bit before, the first three years, really, there was nothing.

We really didn't have much of a presence.

You know, we were just fumbling trying to figure it out, you know, what do we want to do?

Who are we?

What are we?

You know, and originally it was a spinal Network.

We were.

We were the Southern California chapter of the National Spinal Cord Injury association, which changed when the National Spinal Cord Injury association changed to United Spinal Association.

So then it became a little easier.

It was the Southern California chapter of United Spinal Association.

And as one wise man once pointed out, it doesn't fit on a pen, does it?

Yeah, no.

Or a mouth or.

Doesn't roll off.

Yeah, exactly.

And.

And so, you know, people would.

Would refer to us as.

Oh, that's the.

The.

The United Spinal Chapter.

Yeah.

No one knew who we were or what we did.

I said, you know, years and years ago, a friend of mine had started this publication called Spinal Network.

So the board said, you know, we like the name.

So I went to Sam Maddox and I said, sam, can I use the name Spinal Network?

He was probably.

I said, probably because, yeah, I don't own it anymore.

I sold it 30 something years ago.

Yeah, well, okay, then who did you sell it to?

Well, I sold it to this company, but they don't own it now.

I'm going, oh, my gosh, who owns it now today?

And so he goes, oh, you know, Gene Dobs, who is.

Who is.

Who runs New Mobility magazine and who have known for.

Had known for a while.

So I contacted Gene.

I said, gene, can we use the name Spinal Network?

And she goes, yeah, I bought it 12 years ago.

I was going to do something with it, but I haven't, so.

Which means I'm probably not going to, so go ahead.

I'll tell you, when you make a name change after you've already.

You're already listed with the IRS and the state.

I've thought of that myself because I. I literally, like, have tons of squirrels in my head.

And I'm like, I should do a brain of like a umbrella.

And then it should be a DBA for all this other stuff.

Then you see how hard it is, and you're like, no, forget it.

You're stuck.

Years ago, an organization that I volunteer with changed their name.

Who?

There is a lot of stuff to consider.

You know, just all the things you mentioned, IRS and all those things, and then it's paperwork.

You know, all your letterhead has to change and all of those things.

Bank accounts.

Yeah, bank.

Bank accounts.

Any.

Anything that you subscribe to.

Yeah, know, subscribe to, you know, Doodle, you know, and.

And to Canva and to, you know, whatever you have to go and make.

And.

And of course, changing it at the bank was probably the most difficult.

Yeah.

Right.

So, but we did that and we changed it with the IRS and with the Secretary of State and finally got through all that.

I hired somebody to come up with the logo.

We did change the tagline eventually, but inclusion, participation and independence, which it changed just a little bit because inclusion, we felt really needed to be in that tagline.

And, you know, we didn't have money, so, you know, we had a website using WordPress.

And over 18 months, I learned how to maintain and manage and the website, you know, just out of necessity.

You know, the same with the newsletter and on and on.

So doing crash course, this is how it all happens.

All of us sitting here, that's the only way that we know how we're doing, what we're doing.

I mean, some of it, I get paid as a job, but a lot of it is late night going, what will this do?

Will this break it?

Will it take it offline?

Whoops, you know, and then fixing it.

I broke it once.

Yes.

Once I did something where I went.

I don't know how to back out of what I just did.

Yeah.

So calling our web host and, and, and Michael just laughed and said, don't worry, we'll fix it.

Feel like you're bad?

Yeah.

Just don't do that again.

So please don't touch any buttons you do not recognize.

Yeah, I'm curious.

There's a lot of organizations around Southern California that are doing sporting events, adaptive fairs and that kind of thing.

And there's nothing wrong with that.

They're great.

But there's a lot of people that, you know, may not be interested in sports.

They want other activities.

How do you address that?

Yeah, you know, we, you know, having been a part of the, the adaptive sports scene for a number of years, both in basketball and tennis and.

But when you really look at adaptive sports and, and who participate, it's really a small percentage of our community.

So I really wanted to focus.

Have the focus more on adaptive recreation, you know, which could be anything from photography, you know, to, you know, let's find an accessible trail and go hiking, you know, or adaptive, you know, feeding my face, which, which we do every, which we do every month.

Like, have you been watching me?

That's what I do.

Like, Doug goes down to all the adaptive stuff.

I'm like, cool, I'm here reading a book, sitting with my dog.

Tell me about it later, Doug.

And, you know, we're, we're, we just collaborated on a, on a big adaptive sports and resource fair.

A few weeks back.

Sometimes it's just inviting those who don't want to participate just to come out and, and see what's going on and to meet people and you know, we do, we also, the first Saturday of every month we do for.

It was, well, it was, for lack of a better term, we, we do a walk and roll.

I like and yeah, and it's down in San Diego, right on Mission Bay.

There's this great, it's a paved path and you know, in it gentle slopes, you know, so nothing too crazy.

And so the first Saturday of every month at 10am we meet down there and it's open to anybody, anybody wants to come, whether you're in a chair or not.

And I always bring donuts because we have a, an 11 year old girl who's the daughter of the person who does our social media and if I don't bring donuts, Bridget will let me know.

So I bring donuts.

You know, we go out and it's, and it's interesting to watch the dynamics because as we're going along you might see two or three people grouped over here and another two over here.

Maybe you go a little bit further and you look.

And now the groups have changed.

You know, the person that was here might be over here and where people are just conversing and maybe they're asking questions, maybe they're sharing something.

We get out to the end of the, the trail where we have to stop and so Shaya can take the picture for social media and, and then, and then we head back and so out and back is a mile and a half.

It's, it's a leisurely pace.

You know, we're not going to get the heart rate up real high at that pace.

But it's, I mean it's just, I mean you're right on the bay.

So even when on the hot days the breeze is coming off, it's a great place to hold that event.

And we've been doing it for gosh, probably six years now.

I would think that's awesome.

We tried it every week, which I got burned out.

So then every other week.

But you know, it's easy for someone to wake up and go, you know, I don't feel like going.

I, you know, they have it again in a week or two weeks.

I'll just go then.

So we, we did put it on pause for a few months and it was the colder months anyway.

And when we started back it was, it was monthly.

So now if somebody wakes up, they don't want to go.

Okay, now you're going to wait another month before, so.

Right.

There's a little bit more fire up under there to go.

Yeah.

So that particular activity really serves a lot, you know, you know, several purposes, really.

You know, I mean, as far as socialization, building your support network, getting answers to questions, you know, just.

And getting a little exercise, getting some fresh air.

I do.

I look forward to that.

Another organization that I go to was kind of saying the same thing.

We were playing over the line on their weekly, you know, sports day, and she kind of leans over to me and we're looking at everybody playing over the line.

And she said, this is what it's all about, you know, getting them together.

And they have conversations.

It starts conversations.

Well, and for people who are anxious.

Right.

Or like, have more trouble going into a space that feels like, not necessarily claustrophobic, but like, if you're moving, you can be like, oh, you're not specifically looking at me, nor are you here to talk to.

To me, like we're doing something.

It's like, what do they say it like, when you do it?

Like you co. Work together almost.

You're not doing the same job, but you're sort of sitting in a space.

If you, you know, body doubling, almost.

You're body doubling as you're walking.

Because you can be like, oh, I'm just here to walk.

No talking, you know, or you can be like, I'm actually here to talk, but I feel better moving because it doesn't feel like the spotlight is on me.

And my question could be dumb and I could be judged.

Right?

Yeah.

People are curious.

They start asking a lot of questions about how long you've been in a chair, that kind of thing.

And then more practical questions.

Can you drive?

You know, how do you transfer?

You know, what method to use to put your pants on, whatever it is.

Yeah.

Because there was a woman who was relatively new, newly injured, and so she had questions that were really specific to being female and with a spinal cord injury.

And so I had to wander into that group.

You know, they didn't hesitate at all.

They just kept going with the conversation.

And that's when I realized I'm probably not as welcome in this group as I might be.

Macro.

Yeah, right.

And then you're like, oh, Steve, switching, switch and switching.

But you have had a female support you all this way because you mentioned your wife and you've been married for eons.

I have five kids and, you know, three of them are.

Are girls, and I have five grandkids.

And three of them are girls and we have a new grandbaby on the way and that grandbaby is going to be a girl.

So.

So yeah, it's.

I probably could have answered some of that what she was asking, but like.

I'll hold, I'll hold my tongue, thank you.

Probably best.

But I mean obviously you've gone on because you met your wife post injury.

Right.

So you have created a family and you obviously talked family support and friends that drove up to see you in things.

But it switches when you are now creating this family.

So how do you think that that kind of shaped your outlook or like what adaptions did you have to make versus like, I don't know, I hate to say like what an able bodied person would do but I mean there is definitely a bit of like, like adaptions that are made right to live a life and be a married couple and do the things you can't necessarily have.

Everything exactly the same.

So I've always kind of gone along.

I just need to be me.

I mean when Karen and I, you know, we knew each other for a year before starting to date.

So you know, during that dating time and she.

So when we got married, I mean she knew all that was involved, I think would only come into play if we were traveling, you know, because we were married in 87.

I had already taken the job out here.

Okay.

I was out here in July of 87 and then flew back in September and then we got married on September 12 and on the 13th we were on a plane back to California.

Yeah.

So yeah.

Though recently my wife and, and some of her friends were going to go on this river cruise in flying into Germany and then doing this river cruise.

I've heard of these.

Yeah.

Where they were all going, you know.

So she asked goes, is this something you want to go to?

And I thought about it.

I said not really.

Don't you love a relationship where you can say not really and nobody cares?

I said, you know, listen, you're there, you're there with your friends.

You get, you know, your best friends going, you know, people that you've.

She's a teacher so people that she's, that she taught with, you know, they're going.

And I said, you know, go and have this nice vacation without having to think about wheelchair access which is, you know, is this accessible enough or we want to go here, but is it accessible?

Just go and don't even think about that.

Just go and have fun.

You know, I did, I traveled a lot when I was working.

You Know, for a while I ran colored wheelchair.

And my partner in crime there, Ernie Espinoza, he and I would, you know, I mean, there was one.

One particular year where, where we were on the road for 26 weeks out of the.

Out of the year.

And with all trade shows and all the things which I just said, I would never do that ever again.

So, you know, I had a chat, been in Germany.

You know, I just thought, I don't feel like, especially at this point in my life, you know, I really don't want to sit on a plane for 13 hours.

Yeah.

I don't want to deal with accessibility that's marginal.

Got to go.

Well, like I say, I mean, that's the joy of, like, not even being differently able.

That's the joy of being old enough to say, no, thank you, and having a partner that says, okay, cool, I'm on my way.

And there's no, you know, you're like, I'll hold down the home for it.

Like, I think that's great.

But I think it's also tremendous when you find partners that don't make you feel any kind of way, like any kind of burden, any kind of.

You're different.

And they acknowledge that and they do whatever they need to do to fill the gap of different, but they don't fully make it weird.

I don't know, explain it.

But I've always had good friends and things that are good to me in that way.

I'm pretty sure that there are probably people in our audience that are listening and.

And thinking of themselves.

It's always the person with a disability that has to, you know, kind of give up something, you know, and I want to say to those people, especially if you're younger, you know, you'll find out over the course of your life that the same things will hit differently at different ages.

You know, I'm sitting here listening to what you're saying, Rick, and going, I get it, you know.

Yeah, yeah, yeah.

I've done enough traveling and sitting.

Just sitting home here just feels like heaven.

Yeah.

Yeah.

So, I mean, it's the house, you know, the home has.

Has what we've turned it into.

It's cozy and.

And, you know, because I. I was hitting 50 years post, especially at a point when, When I was injured where they said the life expectancy was 13 years.

And, you know, and I, in all fairness to that statement, probably the best wheelchair cushion at the time was a T Foam cushion, you know, in the wintertime, became a brick.

Pharmaceuticals hadn't caught up with, you know, what it would take to manage a neurogenic bladder, you know, where.

So that, you know, you weren't getting severe UTIs backing up into your kidneys and, you know, let's toss in a, you know, a side of pneumonia and boom, I'm gone.

And having worked in that industry, so I was able to work and have at least some input into wheelchair.

The.

The wheelchair design.

And Rick J.

Was making these cushions and he would customize it a little bit for me, and in turn, I would give him the.

The feedback on.

Along the way, I've met some incredible people.

A special shout out to my friend Marty Ball, who was certainly somebody that I wanted to emulate.

So where was I in that whole thing?

Traveling.

Gotta keep me alone.

So.

So, yeah, it's just, you know, now, I mean, I sit in, you know, my office.

We built this office out in the third car garage, 20.

I don't know how long ago, probably 20, 25 years ago.

Because in the summer when Karen would be off and the kids would be off, I could still work from home, but not be in the middle of chaos.

So even when the kids were older and.

And, you know, moved into their own places, it was like, listen, this is already set.

I mean, I'm here.

I'm the only coffee drinker in the house.

My coffee maker is there, my turntable and stereo is there.

My albums.

I. I've got the little virtual screen here, but otherwise you just see this shelf.

This is your man cave that you call your office.

There it is.

Books, albums, all in the back.

Very nice.

You know, all part of my life.

Yeah, yeah, yeah.

The joy.

My joys, you know, the things that I. I love.

I could sit there and throw an album on there and you drink my.

Coffee and, you know, change the world.

Do the work.

Yeah.

Play or whatever.

So.

So we're going to wrap up here, but I just want to let you have the opportunity to tell everybody where they can get a hold of you, especially if they're in that San Diego County.

You couldn't touch on everything, but if anybody has questions, how do they get a hold of you or, you know, outside the area if there's somebody looking for some, you know, answers to questions they've been, you know, they've been wondering about, and maybe you could provide some of those answers.

So how's the best way.

If my, if you're not in my phone, it's going to go right into voicemail.

But leave a voice.

I will listen to voicemail and call back.

That's my fault.

Where it's legitimate.

Right.

So now this world we live in, like that is the only policy I feel like.

So.

And I guess maybe the final question, unless Addie's got something, but just what are you looking for down the, down the road?

What's the future?

Do you have some ideas of some things you want to accomplish in the.

Next couple of years with Spinal Network or personal Spinal Network?

A youth program, you know, there's.

There's some organizations across the country.

One is SCI Boston.

And the folks there, not only because it's, it's back in my home state, but they run an incredible program there.

You know, I look to see what they do and if I have questions, I know I could go there and ask and they would help without any reservation.

So that would be, I think from the Spinal Network standpoint is we like to add a little something each year and grow a little bit more.

And I, and I really feel like that the youth need more program availability in San Diego County.

So personally, yes, I think I turned 71 in.

In April.

So you start getting to a point, especially as, you know, over the last few years, I've seen friends just kind of pass on and, and, you know, I, I feel good, but I've been focusing more on staying on top of appointments, you know, whatever it may be.

Oh, let's get my feet checked out.

Is there anything wrong with them?

No.

But you know what?

Why wait until there's something wrong with them?

Get them checked out now, you know, or.

Because I'll tell you, spinal cord injuries, people say, oh, I can't feel them, so there's nothing I need to do.

To them, you know.

Not true.

I thought the same thing until started having issues with a lot of edema, which creates other.

So just being there, even though you can see it, you can't feel it.

It's still doing things.

It's still part of your system, so you better maintain the system.

Yeah.

So just focusing on staying healthy and, and I had mentioned to this to Doug earlier that I'm looking to take a look at what's on my plate and begin to get it off my plate and to recover and regain more personal time for sure.

You got grandbabies to buy donuts for.

You're slacking, Grandpa.

Yeah, I know, I know.

I'm right behind you, Rick.

I turn.

I don't know when this is going to hit the.

It's in September.

September 1st, I think.

September.

So I may.

I've.

I'll already be 71, but I'm doing the same thing I have.

I have two appointments tomorrow, different doctors, where it seems like there's at least one a week.

And it's just, you know, nothing going on specifically, but it's just maintenance, make sure we're on top of things and all that.

Yeah, yeah, I'm with you.

Yeah, I've got the cataracts that need to be dealt with right now.

Well, it's been great to hang out.

With you, Rick Hayden, executive director of Spinal Network.

Thank you for taking some time and sharing your story and the story of Spinal Network.

We appreciate it.

Thanks for spending time with us.

Oh, my pleasure.

Nice to meet you.

Take care.

Each week on Walk and Roll Live, we share honest and open stories of people living with a disability.

I was excited to show my family just how much better of a skier I got to be.

So we went up on December 30th.

Then the next morning, I woke up.

10 Out of 10 pain, chest, back, head.

I slowly lost all feeling from my feet all the way up to my chest that I was paralyzed, essentially.

I didn't understand what was happening.

All I knew is that something scary was going on.

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From the Agya Professional Training Studio.

You're listening to Walk and Roll.

As always, I love sitting with the guests, no matter who they are, but I love the fact that he was injured young.

He didn't say, okay, well, this is where it ends.

And I'm never going to do anything saying, like, he lived and lives a tremendous life, and I love that.

And I.

It was very interesting to listen about, you know, all the different wheelchair stuff and, like, how he kind of went from company to company because of his passion.

And then, you know, in retirement, when he decided, well, that's enough of that, he still didn't stop.

He made a new way.

Yeah.

You know, to.

To do community.

And obviously, like, as we're sitting there, you like your push to the pier, and he does something very similar where they are.

So I'm like, oh, it's kindred spirits,.

But another destination to another excuse to get to San Diego.

I was like, there you go.

Always nice.

Yes.

Yeah.

Very good.

Well, thank you, Rick, for coming on.

And then coming up next week, we have Laura and Solara Ashton.

They came to me through a friend of ours and.

And I don't think she was a.

She didn't know them, but she's just.

Laura came up on my friends Facebook page and she was just kind of going through a rant, you know, just.

Yeah, I'm sure.

You know, as you'll hear next week in the interview, there's a lot to.

To take care of her daughter.

She's been through multiple surgeries and, you know, she has to take care of her every need through the day.

And I think she was getting frustrated at the time, you know, with, you know, other people that have children with disabilities.

You know, I don't.

I don't want to put words in her mouth, but.

But, you know, to paraphrase, don't want to paint her.

Very frustrated.

Yeah, very frustrated.

Yeah, yeah.

So we'll hear all about that, how she dealt with it, and maybe it'll help you.

So that's what we've got next week.

Don't forget to like and share and all of those good things.

Help us out.

Yeah, yeah.

Do the things.

Press the buttons.

All right, I think that's it.

You got any more?

That's it.

All righty.

Nope.

Good you to see.

See you again.

Thanks for listening.

I'm your host, Doug Vincent, along with Addie Rich from the Agar Professional Training Studio.

This has been Walk and Roll Live Disability stories.

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