Harley Draven
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From 1995 to 2000, Harley Draven worked with the US Army Corps of Engineers' local water safety program. The program takes the message of water safety through presentations to elementary and high school students as well as the county fair and campground/campfire programs.
Ms. Draven joined the program as a volunteer shortly after a diving accident that left her a quadriplegic, at the age of 19. She decided to join the program to help others avoid dangerous accidents like the one she suffered. Ms. Draven goes out to speak to students annually during the three months in which the water safety program is in session. Last year, forty-three presentations were given. In addition, Ms. Draven also gave several presentations on her own without assistance from the Army Corps. Each year she also speaks at the annual week-long safety fair and gives presentations at various rehabilitation programs throughout the Visalia, California area.
According to Phillip S. Deffenbaugh, Park Manager for the US Corps of Engineers, “When Harley gets up there to speak, the whole program changes. It brings reality home." Since Ms. Draven joined the program, Mr. Deffenbaugh has noticed a drop in water safety accidents in the Tulare County area. Mr. Deffenbagh could not say if Ms. Draven's efforts were the sole reason for the drop, but he is sure that she has made an impact on the students. "They don't ever think that anything could happen to them, but after they talk with Harley, they realize that it can."
Ms. Draven is President of the Northwest Spinal Cord Injury Network as well as COO and Cofounder of A Place for Father, a Fathers’ rights advocacy organization.
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S01E15 Harley Draven.mp3 - powered by Happy Scribe
Welcome to the Enabled Disabled podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called PFFG. My journey has been about self acceptance, persistence and adaptation. On the show, we'll explore how people experience disability. The stories we tell ourselves can both enable and disable our vulnerability is the foundation for strength and why people with disabilities can contribute more than we imagined. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.
Harley Draven is a motivational speaker, president of the Northwest Spinal Injury Network, painter and disability rights activist. Harley is a beacon of courage and positive energy directed at change, as you listen to our talk, try to keep track of how many times she uses the word help, as in she wants to help others and make the world a more accessible, inclusive place for people with a disability. If you're enjoying the show, please share it with a friend, colleague or family member, it helps us grow and become a stronger platform for the disability community.
Harley, welcome to the show. Nice to see you again.
Likewise.
I wanted to start where I usually start with our with our guests is tell us a little bit about you, like what growing up was like, what kind of a person what kind of a child were you? What were you into? And then we can we can progress from there.
Oh, goodness. Where do I start? I grew up a little country kid down in California, and so pretty much wherever my little feet could take me, wherever I was allowed to go. And I was very energetic. I'm still energetic. And I grew up in California, a little tiny town called Exeter. And I actually grew up about seven miles north of it, out in the boondocks, as everybody called it. And then I became a quadriplegic on my 19th birthday when I decided to dove into a river and accidentally bounce my head off a rock.
Oh, OK.
So that you that that happened when you were 19. And tell me a little bit about what was that adaptation period like for you afterwards, what happened, what some of the things you had to go through and how did you adapt?
Well, it actually happened on my 19th, 19th birthday itself. Well, and then I was on such a roller coaster afterwards because before my accident, I was starting a modeling career. I had three horses. I had two small children. My daughter turned two years old the month before my accident and my son turned ten months old the day of my accident. And so for me is a very trying time because of not only was I learning, oh, my goodness, I'm a quadriplegic and having to learn how to brush my teeth all over, having to learn how to get dressed, because when it first happened, I couldn't even lift up a piece of paper.
I went from throwing around one hundred pound bales of hay to not even being able to hold a toothbrush. And so it was it was very shocking. It was very hard and very trying. And so even though I started public speaking nine months after my accident, secretly behind closed doors, I was just shattered and trying to kill myself on numerous occasions. And it was this is really hard to say. It was really hard.
Were there, were there, I'm sure there were, but there must have been some important people around you that helped you get through that or at least gave you enough. Hope you believe in yourself, believe that there was a better tomorrow, that there was something to look forward to, but what did that who were some of those people? What did your support group look like? And and how did your. Your your state of mind slowly change.
As for my support group, I'm an only child and so my biggest support group was my mother and father. And then I would look at my children and they were the ones that inspired me the most to try and strive because I looked at this like somebody had to be there for them. And so that was my biggest support group for those four people. I did still have a bit of support from the church that I grew up, where I grew up in.
That faded, though, over time because I wasn't close to those church members anymore. And that wasn't my strongest faith. I felt there was a lot more to the universe than that one religion. And so between my free to my free spirit and the confinement of a rigid religion, I just I was given roots and I grew wings. And so another thing was my father and mother always taught me to be strong and self. And they those words have stayed true with me for the rest of my life.
And so I did all I could so that even though I was devastated, I was trying to kill myself, I knew that there was a purpose. And it wasn't until almost six years later that I got off the emotional roller coaster and started saying, OK, if I can't kill myself, there's a reason. And I need to figure out what that reason it's. And from that moment on, I've been doing all I can to be as positive as I can.
Can you talk about that a little bit? What are some of those things that you've been doing that have helped? Number one, your mission and your purpose. What did you what did you find?
My purpose is that I've been helping the elderly and persons with disabilities long before my accident. And so now I feel that God put me in a place where not only can I advocate for them, but I can be a part of this world and now I can have a greater understanding of what we as people with disabilities go through. And now I can be a greater advocate and a greater help with the bring more education. I feel that being put in a wheelchair was the greatest gift of my life and it's opened my eyes and given me so much more opportunities to be the greatest person I am.
That's amazing. I. What I've been so much my experience has been different because I was born with a disability, so this is all I have known. So it's it's really interesting to and an interesting is like that's that's not the right word. It's eye opening. And I am learning so much and talking to people who have had a disability at some point later in their life to see what their perspectives are and how they changed. Because I've I've certainly been depressed.
I've had I've hit my rock bottom, too, when I was in my 20s and. Get over it, of course, but it's it's it's there's a lot of similarities, but there's a lot of differences there, too, because I have never known anything other than what I am, if that makes sense.
Oh, absolutely. Absolutely. Going from riding horses, jumping horses, bucking hay, as we call it, and taking care of an orchard and farming to all of a sudden not being able to take care of myself, not being able to sit up on my own. Yeah, it's quite an adjustment. And so it gave me a greater appreciation for those that have known no other life. But they've grown wonderfully with their challenges. And to give me the opportunity to adapt my own self and grow with my now challenges.
It's amazing.
Absolutely. When did you so you said it was about. It was about six years later when your perspective you got you kind of got off that emotional roller coaster and your your perspective shifted.
Oh, yeah. Yeah. It was six years. The accident happened on my 19th birthday in nineteen ninety four. And it wasn't until two thousand that I really just. OK, enough's enough. You know, my children deserve a mother who's here for them in the present in the now and they deserve better than what I was. And it was for them that I got off drugs, I quit drinking. So I'm, I'm an American but it's not like I was.
And I realized they deserved better. And so the way I got sober was I couldn't go to rehab because the bus transit system didn't have the hours. So the meetings were in the evening. So I can get to the meetings. So every day I would look in a mirror and I would say, I'm better than this. And then I'd look at my children and say, they're better than this. And I'd go back and forth between the mirror and my children and I'd do the mantrip.
I'm better than this. They're better than this. We deserve better than this. And I did that for about three months and that's how I got sober. I was just fighting every day. For what? For my children.
That's that's incredible. Regulations for having the courage, the perseverance and the. Desire to improve that situation. That's incredible. Thank you. And after those three months, where. Can you take us through a little bit and. What started to shift in your life getting sober is a huge that's a huge thing, but after that, like what started to shift for you, what sort of change, what sort of changes did you notice start to develop inside you that built that momentum of positivity?
My absolute faith in the universe. People call it God. Others call it a creator. Some even call it all up. And for me, it's knowing that the universe speaks if we are willing to listen. And my biggest shift was I was doing public speaking. Nine months after my accident. And I was going out there telling people that there is life after an accident. There is life in a wheelchair. While behind closed doors, I was trying to kill myself.
I discovered how much of a hypocrite I was and I could be that hypocrite. And that's not who I am in my spirit. And so that was the biggest shift for me. And from there, it's like I started becoming an independent living specialist with independent living centers. That's why I started diving into advocacy and standing up for others and myself and realizing we have a life. We truly do have a life. I can actually say it and mean it.
And so it's been wonderful just going out and actually public speaking with people, doing motivational speeches, becoming part of organizations that help with disability issues and actually feel I feel it, not just take it.
Absolutely, that's it, that had to have felt really good when when. Both things were united within the inside and the outside that had to have been an amazing feeling. So for people who don't know a lot about independent living centers, can you talk a little bit more about what they do? Like what what they're what the benefit is that they provide to the community?
An independent living center is a place it's actually considered a nonprofit organization, and their criteria is that 50 percent of their employees have disabilities and they go out and they help people with housing issues, transportation issues, financial issues, even advocacy. If somebody is having an issue like they just really became disabled and they need to get on, Social Security and Independent Living Center can help with the forms and the process and take people step by step. I've even gone to appointments with people having to deal with Social Security.
Another one is housing. We look for wheelchair accessible apartments and complexes that can help that person get into it, even programs that assist those on low income.
So, I mean, that's that's all extremely important stuff, what are the. In terms of housing, are you seeing like any any improvements, like what percentage of the houses, at least in your because. The independent living center is my understanding of it, is that they're pretty localized organizations, right? So you're specializing in like your community around you. Is that correct?
Our nearest independent living center is about an hour away. I live up in Bellingham, Washington, and we are a small town. And there is not a lot of services up here for anybody of any type of disability. And that's why I'm honored to now be the president of the Northwest Spinal Cord Injury Network. So this way I can help people with spinal cord injuries, get even their caregivers, even help caregivers. And so we provide support. And I'm doing all I can to bring forth my experiences and my training as an independent living specialist at the forefront of being the president and utilizing what I learned as services that we can offer.
Amazing how how long did it take you? Training wise, to accumulate this knowledge, when did you feel like you really had a good handle on on the information?
I'm still learning. Every day is learning so I can say that I've really had a grasp on it for years, but there's always something new out there. So for me personally, I feel like I don't have a one hundred percent grip on what what all is out there for people because it's fascinating to constantly learn and grow. But I would say I'd have a good ninety five percent knowledge of some of the opportunities and agencies and resources for people out there.
Interesting. And what would you say besides like most most non-profits, I would imagine that fund funding is always a challenge to some extent. Beyond that, like what are some of the biggest obstacles, the constraints that you're working through that could improve?
I would say the number one is accessibility, accessible traveling on airplanes is horrific. The aisle chairs are not meant for anybody that can't use their legs. Recently I flew and my feet fall off. So you have one employee holding your legs, one employee holding on to you in the chair, and hopefully you'll be able to get into the aisle and have a seat. But the seats are so tight, so close together that you don't really have any foot room.
And then if you don't have any foot room, where is your service dog supposed to go? So hopefully we can change that around and make it so we can at least get our our wheelchairs onto a plane and have secure events like they do on the busses. Another big, huge issue that I've come across in my county alone, there is not one single wheelchair accessible taxi or limo. So if there's an emergency and you can't get a bus to get you to the hospital for your loved one, your S.O..
Well, and that loved one could pass away without you. Say goodbye.
That is a big that is a big issue.
Yeah, and that is something I really want to change. I really want to go up against the Dotti and change that and make that a law. So anybody wants to provide a service of transportation. They, by law will have to have at least one wheelchair accessible vehicle in their fleet.
That makes total sense and it doesn't seem like it's that difficult to do and think it is, you wouldn't think it is. And even if you go back to your airplane example, I mean, that's something that I've. I've been aware of so I am not a wheelchair user, but it's definitely something that I've noticed because I've seen I've seen it before and I'm like that something this is this is off, right? Like the there's room in first class.
There's room in business class. But in coach, it's just not like you're telling me that they're going to lose that much money. To make two to three rows accessible on an airplane. Come on, it's it doesn't make sense to me.
Oh, exactly. I mean, not even the bathrooms are wheelchair accessible. So if a person with a disability has to use the restroom, how are they supposed to even get in it? There's not even room for a locker.
Absolutely. Absolutely. So the. That's a very. And have you have you started that talk with with the Department of Transportation yet or has it yet recovered?
Everything has been so shut down that it's hard to get anything done. OK.
Let me let me know when you do, because I would love to, if I can help with that, I would I would love to be involved with that and see if there's something I can contribute, because that is. That's a huge barrier to. We think of we think of travel as an extension of our mobility, so the human race has this incredible mobility and our thanks to airplanes and yet. We're limiting access to a huge group of people.
Yes, yes. So.
Accessibility with transportation. That's that's certainly one huge constraint and thing that you're working on trying to solve. What's what's another what's another key one that you're seeing as the housing situation?
Housing is difficult. Yeah, there's apartment complexes. But what about houses, single family houses being on such extremely fixed income? I am below poverty level at all times. I can't even rent a place. So there we go. Cost of living. It is horrendous. I make only eight, one hundred and three dollars a month. My rent is one thousand four dollars a month. How am I to live? There's one primary one, and they tell all they tell me is get on a housing program, I'm sorry, I have enough issues with the government controlling my finances, controlling where I live.
I don't need a housing authority or housing program to do inspections every few months to end the housing inspection fails. Then I'm forced to move. It's not fair. I shouldn't have to be told how to live, where to live. I think that we deserve to live independently as anybody else. Another huge issue. Here's a big kicker. I can't get married. I mean, I can if I want to. But if I follow the American dream and get married, I will lose all my medical benefits, all my food stamp benefits and almost all my cash benefits.
It's like I'm being punished for following the American dream and getting married.
So can you I'm not so. I think I've read about this and I know about it, but not not as well as you do so. What is like I'm missing something there, so basically you have some medical you have some medical benefits from the government, correct? So they give you they give you a certain amount of money to help with with your medical bills.
Actually, I'm on Medicare and Medicaid. Medicare covers 80 percent of the cost and whatever they don't cover, Medicaid usually picks up the tab after. But if I were to get married, they take all that away from me, expecting my spouse to take care of me. And if I need a new wheelchair, that would have to be out of pocket. And anybody who uses a wheelchair knows that they are not cheap.
No, they're not. I know my prosthetics, my prosthetics are the same way, and I I need new ones every five to seven years and it's always a. It's always an interesting time with the insurance companies when that happens, um. But so what would happen, let's say, if you were. If you were to get like if you if a company were to hire you and they were in, you're qualified to do X, Y and Z or somebody was to pay you, you were to make a lot of money, motivate doing motivational speaking.
What would happen in that case? You would lose the benefits from the government?
Oh, yes. Up here in Washington State, I'm only allowed to make eighty five dollars a month working before they start taking away my benefits. And so every penny over that eighty five dollars is taken away from my cash benefits. So this way I can never make more than eight hundred and three dollars a month.
And if you were to make more than eight hundred and three dollars a month, it would have to be a lot more a lot more, right. In order to not to compensate for the loss of benefits.
Oh, exactly. Yes. And personally, I feel even if a person with a disability, if they're born that way or they became disabled in any part of their life, I feel that that they should not be punished for wanting to get married. I think that definitely they're able to get them. They should be allowed to keep it. For example, you have two able bodied people working. They decide to get married, is not forced to give up their income.
They're not forced to give up their insurance. So why are we different?
That's a great question. Great question. We shouldn't be.
We shouldn't be at all, we are people.
So the assumption then is when you get married that you lose the benefits because your spouse is supposed to. Cover for that.
Exactly, yes.
That logic doesn't make sense to me.
It doesn't make sense to me either, but I've read it, the Social Security Administration, it's on their website and it'll show that the spouse is to cover your expenses. You are now a of that individual. And it's ridiculous. It's like this is the only income we can ever, ever get. I'm a quadriplegic. I can't go out there and start stacking boxes and doing warehouse positions. I can't be a cashier because most cashier positions are a lot of lifting objects to put them in a bag.
Being able to push buttons and you want to quick you got to do it quickly and efficiently. And as a quadriplegic, we have no hand Streit's.
But but all of that is true, um. There are plenty of I mean, I don't know if there's plenty there should be plenty of jobs that we that. People with disabilities can train for whether it's whether it's writing, whether it's something creative, whether it's something more. Legal. Brain work, work, working with your mind, but even even then, the. You shouldn't be punished, right, for. You shouldn't be punished for like you shouldn't have to give up those benefits that the government is giving you.
And be restricted to that income, if you're making more than it seems like there should be some kind of at least a tiered structure, right? Like if I make if I can make X amount more. Pay me pay me a little bit less, and that way we can we can both benefit and we can both we can both grow like the incentive structure of the system seems completely broken, correct? Yes. And the idea I think the key idea is what you said is when you get married, you're still seen as a dependent.
I would still be seen as a dependent just because we have a disability when that's not the case.
Right. We are equals. I mean, our spouses are equal and therefore we should be treated as such.
Yeah, that's that's those are big. Those are big issues, those are big issues. Jacqui, do you see any any. Headway or progress in making some changes there, are there people that you know of besides yourself that are trying to work on that? I'm sure there are.
If so, I haven't met them yet. I even did a petition a few years back and it went nowhere. I got like about 50 signatures and that was it. And I know in my heart I know how policies work out without at least a thousand signatures. That petition won't make it anywhere.
And there's no politicians or or people in government that are that are advocating for these changes none.
I actually run another nonprofit called A Place for Father, where we advocate for fathers rights and the family law court system. And there's been a SB bill, Senate bill for four or five years, and it has gone nowhere. Nobody wants to pick it up. Nobody wants to try to change the court system and let fathers be equals in the court system. And to me, that's kind of like what we as people with disabilities go through. We're not seen as equals either.
So I'm I've really had my eyes open the past five years on not just what people with disabilities, but father's rights as well.
Seems like there's a there's a lot of there's a lot of things that need fixing.
Yeah, but the most we can do is help those around us build. Those are the people around us, build them up, educate our community. And if something doesn't happen, that's OK. There's always something else. Yeah.
And what so kind of flip it around a little bit, what has been the most encouraging, rewarding? Part of your work as an advocate and in these independent living centers.
Well, I'm an independent living center, says two thousand four, but just for myself, it's the fact that I can help one person and for me, if I can help only one person, that's something that's all that matters. I don't have to change the world. I don't have to help a thousand people to feel good. The fact that I did something for one, that's all that matters. And if I can save a person's life because I've known people that are suicidal and all you do is sit down and talk with them and find some common ground, the biggest accomplishment I feel is living with understanding and people's differences instead of judgment, finding compassion and learning from them and loving their differences.
I find it to make the world so much a better place.
Absolutely, absolutely, and that's something that we all need more of. We all need more of right now especially, but it's. You're right. And that is I haven't had that experience yet, I would like to of helping somebody in that situation, but I'm. I can I can very quickly imagine. Well. How good that must feel and how important it is, like you said, just to help one person, because that that's that's all it is.
It's one person at a time and seeing that person for who they are and trying to help them and understanding and even celebrating their differences, what makes one person unique from another? And we're like, yeah, exactly.
I mean, to me, it doesn't matter a person's skin color, it doesn't matter their religion, it doesn't matter their ethnicity. What matters are their actions.
Yeah, that's it.
Have you I know we talked about this a little bit more, but I'd also like to dove dove into and so that the audience can appreciate more of of you and what makes you unique, what are some of the things that you do in your spare time that you find fun, rewarding, creative and interesting painting?
I love to paint. I do acrylic on canvas, acrylic on cupboard doors, pretty much anything paintable in my eyes. And so I do a lot of paintings and I've sold a few. I've actually donated a few. I donated one to a veterans fundraiser for our wounded warriors and we raised almost seven thousand dollars in one night for a brigaded service dogs. And they saw the Brigadoon Service dogs help our wounded warriors with PTSD. They've also given service dogs to other individuals with disabilities.
And another thing I just paint because it's not just rewarding, but it's physical therapy. It's emotional therapy. And I can let emotions out while I paint. And the thing I love is just being outdoors and camping. Camping is such a blast. I grew up camping and so for me to continue camping even now that I'm in a wheelchair is just it's fun. It's exhilarating. And the greatest thing is like I can have a tarp to the back of my chair and I'm dragging behind me a big pile of wood for the campfire.
My partner, he'll be carrying a little bundle and that's it. Come on. And so it's fun to show people that just because I'm in a wheelchair doesn't mean that I can't do what others.
Yeah, you can still enjoy nature, you can still feel that connection, and you can still. Participate in the painting. The painting is a really interesting one. Is that something that you always did or did you pick it up later?
I kind of did it off and on as a child arts and crafts, mostly with my mother. But I've really become an avid painter, I'd say probably in the last six, seven years. And I really wanted to create an art gallery. Unfortunately, up here in Bellingham, it is overly saturated with galleries. So the value is dwindling. And a painting that would normally be worth like five hundred seven hundred dollars. It'd be a miracle if you get one hundred four.
But yeah, I would love I would love to have an art gallery for persons with disabilities. I've got a main planned out and everything for it is just it's this is the place for one. And I don't want to move. I love where I'm at, but I think to I mean, I'm not super involved in the art community or anything, but from I am interested in it. And I have seen that a lot of artists are have been having a difficult time with the whole pandemic and things shutting down.
So hopefully. As that gets back to get back to normal and there's some. There are some growth and vibrancy coming back in that community, maybe that opportunity will present itself or maybe you can do an online gallery or have it have it be in another in another city without having to move. Maybe you can find a partner now.
Maybe. And that's like done in my time, is I love being an adolescent with the local bus company, which is the transit authority. I've been a volunteer with them for almost 12 years. Didn't realize it's been so long until the other day when one of the bus drivers was talking to me about it. And I'm the poster. I'm on all the posters for service animals. Welcome on those big busses. I've done how to board a bus video on the how to videos.
I've actually helped with their newsletters and stuff. So it's amazing the things that I do in this community. I also serve on a board for. Children's Fund, where we help families with children with disabilities get things that I think we do scholarships, and then just recently I've got a position on another board, so I'm on the board for four different non-profits.
Well, it sounds to me like you should be running for public office.
Oh, I hate politics, but you'd be a great leader.
I believe that I am an advocate for the people created by the people, and that's a massive opposition.
OK, fair enough. Can you talk a little bit more about and this is really interesting to me, the the service dogs and how they help people with PTSD and why they are so effective at doing so.
Oh, goodness. Not just for them, but even my own service dog. I've got mine. I bought them when he was five 1/2 weeks old and he's just a backyard dog, but he's a German shepherd and he is phenomenal. And I personally have trained him to help me roll over in bed because being a quadriplegic, if I have a spasm end up on my back, I can't just roll over easily unless I'm able to reach my wheelchair. And if I can't reach my wheelchair, then he'll let me use his weight and he'll kind of leave so I can use his counterweight to roll over.
He helps pick things that I've been hit by a car, so I have to train. So when I'm at an intersection, I'll give him a command and he'll start barking and he's got a loud bark. So people look, people pay attention. He's also great security. He's kept me safe a few times with some shady people getting too close and make me feel on edge. And so he's helped me on that.
I love the I love dogs, but it's amazing, it's amazing to hear what. The bond that you can you can have with them and just how. How smart and insensitive they are to our emotions, to the things that they can help with, it's just you don't think about it, but it's absolutely incredible what they're capable of.
Oh, yeah. And the dogs with the PTSD, I'm not sure if all of them are trained this way, but some of them, like if somebody's having PTSD episodes, the dog will actually come and nuzzle them and hug them and just keep them calm and let them focus on their breathing. That's my thing my dog does is if I have an asthma attack instead of reaching for an inhaler, I put my head on him and I focus on his calm breathing and therefore I relax instead of feeding into the oh my gosh, I can't breathe.
It's like I can breathe if I just relax. So it's wonderful. And there's some service dogs that are trained for balance. So if the person might have a balance issue, they'll be a bigger dog, but they'll be able to help that person keep the balance. If they start to fall, they can push on the dog. Well.
How long did it take to train? How long does it usually take to train a service dog? How long did it take to train your.
Say, about two years for mine, because I started a little later on his training because I had my previous service dog, but I know a lot of service dogs start their training. I'd say three to six months and they don't get adopted till they're about a year old. And I think one at two years old and they're actually an adult at two years. So that's really when they go into service.
And how do people qualify or are able to get a service dog? What does that process look like?
I'm not sure. I never went through the process myself, but I know there's an application there. I know some agencies like the one gal that we the Children's Fund helped. She had to actually go through a whole process, a whole screening, and then she had to spend two weeks at the agency and so they had to pay for a hotel and everything. So during those two weeks, the dog comes to her. So this way they see which dog goes to her and which dogs fits with her.
They don't just give you a dog and say this is how it's going to be. They actually make sure that there is a bond between the two and then they start working with the two together as the person and the dog and they start taking them out on outings. They work with them commands. It's a whole wonderful process.
That's incredible. And do they? OK, I'm going to research them more because, like, there isn't there isn't a. Like, for example, if somebody I know there's blind service dogs, there's dogs for different different kind of different ranges of disabilities and different different functions. But, you know, if there's a. Like a constraint, like there are certain types of disabilities or things that that service dog just wouldn't be helpful for, that they would say like, nope, you can't have one.
Not that I know of. Honestly, I can't think of a single type of display that would be denied the service dogs, I mean, dogs are so intelligent they can even sniff out cancer. Some of them can. So, I mean, I think it all depends on the person. I just think it's wonderful that you don't go to an actual certified agency, get handed to a dog and say, well, this is your dog. Whether the dog likes you or not, they actually make sure that there's a connection to humans.
You don't make an arranged marriage and say, well, good luck, actually let people fall in love.
That's important, that's important, and that's that is I'm glad that they do that because there are some yeah, there's some animals that are going to bond to you more than others and vice versa. Yeah. And so can you can you talk a little bit more harshly about whether you mention, is there are there any more recent projects, things that you're working on right now that you'd like our audience to be aware of that are really important to you?
Well, the number one thing is for the get my dream for the spinal cord injury network is to make it grow and to one day be able to offer scholarships to those seniors in high school who have gotten a car accident or became spinal cord injured from spinal shock. Any students with a with a spinal cord injury that wants to continue their education? I want our network to be able to provide some to some type of scholarship. And another thing that would be wonderful is to start doing outings, traveling personally.
My partner and I, we've been planning a road trip, and I think it'd be great to go around the country and talk about maybe even create a of blog. And this way we can talk about the challenges of traveling with a quadriplegic, specifically quadriplegic, the way people see what it's like for me, and then go to different places, like maybe something Ossa not your normal Mount Rushmore or Yellowstone even. How accessible are these places, really? I mean, they say they're accessible, but are they really?
And then I'd love to just travel through the United States, all 50 states, and not only would I be looking for things that are accessible or not accessible, but also delve into the cultures because every state is different. And this way I could talk to people about maybe it's a person with a disability and that can help that person out in that city. Maybe there's something I can help that city with, actually work with the council in a particular area and maybe make their city a little more up to date and more accessible for the people in their community.
That sounds amazing. I hope I hope you do it and I will definitely be a subscriber.
Oh, I hope I get some sponsors. I think it'd be a wonderful journey. We're figuring to be at least a three month journey.
All 50 states. Yeah, that sounds about yeah, well, OK. OK, maybe we'll do forty eight. I don't know if I can have the traveling all the way to Hawaii. I mean, being on a plane or a boat scares the hell out of going that far, especially over water.
It's it depends. So I mean, if you fly from California, it's five hours. It's not it's not a short flight, but it's not it's not a long flight either.
So two and a half hour flight from Bellingham to Las Vegas, if I can handle that, maybe I can handle five hours. It's just being over water and knowing that I can't swim.
You have to trust in the plane when you're on one.
Exactly, yeah.
I mean, those sound like exciting projects if is there is there anything that we've talked about that you feel like have I missed anything that you feel is important to discuss?
Not really that I could think of, I know for me personally, I think it's wonderful what you're doing and I hope that people can see through this these podcasts that just because we might be considered or classified disabled me personally, I don't call myself disabled. I'm physically challenged. I also look at the word disabled as abled because it's in there. There's no such thing as a true disability because the word ability is in there. And we're many see the word impossible.
I see. I'm possible. So I believe that with these podcasts and helping people, that we can really reach out to others across the world and let them know that we are important as individuals.
I agree. Thank you for saying that I agree so much, I think that. I hope that this podcast can help if we can if we can change. One person's perception, then we can change another person's perception and they can see us for what our abilities are, how we're helping to I mean, look look at how many times in this conversation you use the word help. I want to help other people. I want to help this. I want to help change that.
That's it's empathetic. It's problem solving. It's seeing it's seeing people for who they are. Like, these are all things that we are so valuable to society, to people, to to the health of our communities that. It's incredible, it's incredible that you're doing it. It's incredible that there's people out there in the world like you, and if we could enable disabled can help. Bring those stories to the surface and change people's perceptions, then we've done our job.
Exactly. And another a very important thing to for people to remember is we are people first, not disabled people. We are people with disabilities.
If it doesn't, it's a part of who we are, but it doesn't define us exactly.
And like I tell people, I don't live in my wheelchair. I live with my wheelchair.
And that's the key difference. That's a very key difference. You are not defined by the fact that you are in a wheelchair. You are you are working with a wheelchair. You are using the wheelchair to help you do the things that you want to do.
Exactly. Yeah, I think it's very important for anybody that has a disability, no matter how long you've had it, just to remember that you are a person and you're just challenge. You're not disabled.
So but two more questions then, because of this, so when you when you help people with that and you help them understand. That distinction. I lost my train of thought a little bit. I'm sorry, so you're you're the wheelchair helps you do the things you want to do, right? We are. We are people first. The disabilities don't define us. How is the what's the next step for that person, like, do they usually have an AHA moment or does it take them some time to realize that themselves?
It depends on the individual. Everybody's different. Everybody's unique. Some people it's like, you know, you're right. And they start going for it right then. And there are other people. They might feel that moment and then it subsides and they just need that gentle nudging and that gentle reminder. And it doesn't matter if it takes one attempt to help them see themselves for the person they are or if you have to work with them for the rest of their lives.
Everybody deserves that encouragement, although I do hope that they find the encouragement on their own and they can really turn to the positive because it's negative. It's so deteriorating and detrimental to anyone's health and it just wears you, wears you out and you end up these for me. I end up getting to the point where I said, this isn't helping anybody. This isn't doing anything. There's so much more to experience in life and to understand and to the value that if the negative the negativity is always there on some level, but it's not.
It's not the controlling force, right, it's not the driving force in in my life.
Yes. And I've heard it come across things throughout the years. We have to choose to be happy. We have to choose to be positive. So everything is a choice. So if our life is miserable, that's because we allow it and we have to strive to make it different. Absolutely.
That's well said, how can people get in touch with you? How can people learn more about what you're doing, follow you, support you, encourage you?
We have a Facebook page, Northwest Spinal Cord Injury Network on Facebook. Also, I have an email FCI network of whitcome at Gmail dot com. Those are the two primary ways to get in touch me. And then I will personally give my phone number out after getting an individual does a two primary so that I can think of. Also, I have my own personal my business email called Phenix Rose, which is p, h, e o and y x r h o s e at Yahoo dot com.
And that's where I do my metaphysical and my meditation and my. So and then the Spinal Cord Injury Network, of course, is for spinal cord injured. But I'm not going to turn anybody away. If anybody with a disability comes to me, I will assist them and all I can. So for me personally, even though I'm the president of a spinal cord injury network, I'll help anybody with a disability.
Thank you so much for the time for the generosity for. Showing us something like you express vulnerability, you express courage, hope, wisdom, and I just I really appreciate how open you were in this conversation and I'm sure that the listeners will be, too.
I hope I can help someone. That's all I want out of life is to help one individual and whether it's saving one person from ending up in a wheelchair. Amazing if it's one person not taking their own life. Amazing. I just want everybody to know that we all deserve to live. We all can and do a lot. And we do get it in return. And if you don't think so at this moment, maybe this is the moment to feel it, but it will come.
I'm going to leave it at that. That was beautifully said. Thank you so much. Welcome.
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