Title:
From Quadriplegic to Advocate: Josh Basile’s Powerful Story

Subtitle:
A Quadriplegic Father’s Inspiring Pursuit of Justice and Equality

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds, we are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. Today we have Josh, Basile. Josh is a C4-C5 quadriplegic. He is a trial attorney working in DC.

He’s a power chair user. He’s a disability rights advocate. He is an inventor. He’s a newly proud father, within the last couple year. He’s doing some really amazing work and I’m so excited to shine some light on some of the advocacy and amazing things that you’ve created within your amazing life. Thank you for being here.

We’ve worked together in the past with disability inclusion advocacy, accessibility. We’ve sat on a couple panels together. We’ve done some work, so thank you for being here.

Josh Basile: Alycia, it’s great to be here. Thank you for having me on. And just so excited to spend some time with your audience.

Alycia Anderson: Why don’t we start with your story and let’s look back a little bit. Can you share a little bit about your disability, whatever you’re comfortable with to kind of paint a picture of who you are as a beautiful human being that you are?

Josh Basile: My life was flipped upside down as a teenager, when I was 18 years old. Prior to 18, sports were a big part of my life, chasing girls, having fun, throwing a little education in the mix, you know… but I was able to finish my freshman year of college and I was playing college tennis at the time loving life. And, I went on a family vacation to the beach. It was an annual vacation I did every Summer for probably over a decade.

And, I was in the ocean. [I had] turned my back to the waves and got distracted. My friends were playing football on the beach, and a wave just picked me up, threw me over my boogie board and just dropped me on my head. And that day, I heard a loud crack and all of a sudden I was face down in the water, unable to turn myself or move anything, unable to scream for help and just kind of had to wait just to hope that my friends would see me floating and they would pull me ashore.

And luckily they did. It was a start to a new life. I was medevacked back to a local hospital, then to a trauma unit and was on a ventilator for four weeks, which took my ability to speak. And I could only communicate with kind of blinking my eyes once for yes, two for no. And when I finally did regain my voice, that’s really the day that I became an advocate for life.

And I’ve made sure that every word from that moment on counted and have been strengthening my ability to communicate and to advocate at the highest levels, to make change and breakdown barriers. And I was… it’s kind of crazy, but it was 19 years ago, so I had 18 years on my two feet and 19 years on my power wheels. And, I’ve been… I’ve been making the most of it for sure.

Alycia Anderson: You sure have. And for our audience, that might not be familiar. Can you paint a picture of what it is like to live a life with an injury that is C4-C5? What does that mean?

Josh Basile: So I am paralyzed below my shoulders. So literally. Most every physical activity of daily living I need help to complete. In the morning, whether it is to go to the bathroom, to get stretched, to get dressed, to brush my teeth, to make a meal, to eat a meal. I rely on caregivers and family members to help me tackle those kind of physical activities of daily living.

I like to say like I’m very dependent on my caregivers, but I’m independent through my caregivers because I kind of become the brains of the operation. I get to be able to have independence of my day or control of my day or what I want to do. But my caregivers become my hands and my legs. And I do. The same thing through technology, like if you saw my home. Like every single thing is, or so much of the technology in my home is controlled by my voice, I gotta be able to control my elevator, my fans, lights, any switch, TV on my bed I can raise and lower it. I can… I can do my… all my blinds. There’s probably like 45-50 devices in my house that I can just control with my, my voice or my phone, which is fun and another thing.

So, I’m dependent on technology, but I’m independent through technology.

Alycia Anderson: Josh does a ton of videos and I love the videos that you put up about your life specifically and navigating technology and the freedoms that it does give you. It really is fascinating to kind of roll into your life from your perspective and see the amazing technologies that are out there now that are gifting independence to people with disabilities.

Josh Basile: Well, and just being a part of the paralysis world for the last 19 years. As technology evolves, independence evolves and opportunities evolve. So it’s incredible where we were at 19 years ago, like we didn’t have an iPhone, we didn’t have, we didn’t have a lot of things that we have today and it’s been transforming our lives and everything is becoming a lot more available and a lot cheaper.

It’s just…, it’s just, it’s an amazing world we live in and in just… the future is just going to get better and better and better with technology. And the key is just always to make sure people with disabilities within these companies and businesses have a seat at the table to make sure that they do it right from the beginning.

Alycia Anderson: Absolutely, 100%. And we are working in the space where we’re constant like we keep got we need to do better. We need to do better. There’s so much work to do. But I do think that that’s a good call out as well, to look at the beautiful things that that we do have today and you know now in 2024 that are so useful for.

Josh Basile: I try to fill each morning and each evening with a moment of gratitude. Because the truth is that things can be worse. And there’s so many little things in our lives that if we don’t take a moment to focus on them or to appreciate them or to be mindful of them, they kind of slip through the cracks.

And it’s… if you can find those little things to be grateful for, it’s just… it just brings so much you know beauty to your day or your ability to appreciate the little things and the and the people that you… that you have with you today. And there was a moment about a year after my injury. That transformed my life and directs that I go and mentally. He was a guy that was the same age as me. He was in the same hospital room as me as an inpatient, and I went and I wheeled in to talk to him.

And he ended up having a spinal cord injury from a car crash during the critical unit stage. He ended up having a blood clot that went to his brain. So he had the same physical prowess as me. But the blood clot ended up blinding him. So he’s paralyzed and blind. And as a 19 year old teenager it, it shook me to my core of like alright Josh, things could be worse.

And it kind of said alright, I’m going to be grateful for every little thing that I have, whether it’s my eyes, my ears, my ability to taste, my ability to laugh, my ability to think, my ability to learn. There’s a million little things that I could still do. Yes, there’s probably a million things I couldn’t do because of my paralysis but by focusing on all the little things you could do.

You could still tackle your day and tackle the world around you. You just might be doing it a little differently.

Alycia Anderson: Thank you for sharing that story. That puts some perspective for sure.

Josh Basile: You can really change the world around you and be a force for good. So that’s I really from an advocacy standpoint, my education helped me take it to the next level, but then I also living in the Washington, DC area. I’m surrounded by so many powerful nonprofits and, you know, being able to wheel down the street of Capitol Hill and meet with legislators and speak at hearings and push forward bills. I was very… It’s… I had a kind of a perfect storm of different pieces of the puzzle to make me a an advocate for life.

Alycia Anderson: When you were kind of going through the path of education, what made you choose being a lawyer?

Josh Basile: It was a mentor. So, I’m a big believer that I will always be a mentor and a mentee for life. So I’m a mentee, cause I’m never going to stop learning and I’m a mentor because I never want to stop giving.

And there’s been so many people along the way that have helped me get to where I need to go.

Like it’s there’s zero chance I would have been able to do what I do today without having the people in my life, the mentors, the different people that have opened doors for me, different bosses, different you name it. I’ve had some incredible people in my life that have allowed me to get to that next page, that next chapter and to build out the story and the journey that I’ve been on.

Alycia Anderson: I love it and in my mind, I just keep thinking of the thing that we hear a lot in the work that we do, which is representation matters. And, to be a disabled person advocating for… rolling into courtrooms and fighting for people who have had catastrophic injuries, personal injuries… advocating for legislation to advance our rights, and to do that as a man with a disability, I just think that is absolutely incredible.

Josh Basile: And it… the experience that we… and I’m able to help our clients beyond cause. So let’s say so as a medical malpractice and catastrophic injury attorney. If you’ve been injured and you bring a lawsuit, it can take anywhere from two to five years to litigate. Which is a long time. It opens up past traumas. It’s… there’s so many things that make it a difficult journey to pursue litigation, but if you have a lawyer, that’s by your side during that time that lives it, gets it, that can be an advocate for you both inside the courtroom and outside the courtroom.

I love advocating for my clients within government programs, navigating everything they need to be able to live independently at home and have access to the world around them. And to be a part of that, it’s just. I know it’s always been very special to me to be able to get back early on in many people’s journeys.

Alycia Anderson: This is a perfect time to take a quick break. You are listening to Pushing Forward with Alycia and we will be right back.

[pause]

Alycia Anderson: Welcome back to Pushing Forward with Alycia. I’m Alycia Anderson. Today we have Josh Basile.

Josh is a C4-C5 quadriplegic. He is a trial attorney working in DC.

I know you do a lot of philanthropy work and you work with a lot of organizations. Do you want to share a little bit about some of that, so, our listeners are aware of some of the programs and resources out there?

Josh Basile: I’d love for people to visit spinalpedia.com. It’s a video mentoring website on… that I created back in 2007. And so that anybody with any wheelchair user, could it be able to find people, find stories, find mentors to show them what’s possible.

Another I know ,I’ve been a board member for the last seven years of the United Spinal Association. Which is the largest nonprofit in the country serving people with spinal cord injuries and spinal cord injury disorders. And it’s just an amazing organization. I would love for anybody that is really a wheelchair user or spinal cord injury to go to United Spinal’s website to sign up to be a part of the association. It’s a… there’s almost over 50 chapters across the country with 10s of thousands of advocates on the ground like it’s… and members, it’s really… the organization represents 5.5 million wheelchair users, so it’s… the work that United Spinal is doing is incredible, and they’ve got such a beautiful team.

Another is Help Hope Live. We talked a lot about kind of navigating kind of benefits and things of that nature, but Help Hope Live is an organization out of Pennsylvania, but they… they’re national nonprofit and they do medical fundraising. So one of the toughest parts of having a spinal cord injury and doing with the benefits is being able to be able to purchase things or to save enough to be able to… be able to buy the things in your life that you need.

But what Help Hope Live does is then an individual can create a campaign where then friends and family members can donate to the nonprofit, and then the nonprofit purchases the different things that are medically needy, whether it’s assistive technology renovations to homes, vehicles, vehicle modifications, you name it.

There’s so many things that this campaign can do to be able to then contribute to you and it doesn’t… because it’s a layer of separation through the nonprofit, it doesn’t impact your benefits. I have my own campaign and I know hundreds of hundreds of families across the country that it’s been a game changer for them to be able to raise dollars. And their family members and friends when they donate in its a tax deduction. So, it’s a win, win, win across the board.

Alycia Anderson: Can we shift?

Josh Basile: Yeah.

Alycia Anderson: Can you talk about becoming a dad?

Josh Basile: Sure yeah. After my injury… even before my injury, I’ve always dreamed of being a dad. Like, I guess just as through my mentoring I’ve always wanted to give back. I’ve wanted to be a coach for life. I wanted to have a little person in my life that I could have great influence on them. And… But so, for me it’s just a matter of finding the right partner to start.

So getting out of the dating world. I did a lot of the online dating apps and had my fun with it. I had a lot of dates and was continually searching and searching and searching for the right person. And then I found Katie. And I fell in love.

And when we were ready to start a family. And Kate, I got very lucky coming into the relationship with Katie because she was recently divorced. She had a beautiful daughter. And to be able to come in, like, right away, I kind of was a dad of sort.

When we first moved in and having my daughter being a part of my life. And then when we were ready to try it again ourselves, we ended up, we tried unsuccessfully and then we ended up Katie started in vitro fertilization process and we went down that road and luckily we had a success on the first try. Which is that [not] always what happens for people that are going down that road.

And our son Calder was born about two years ago and it was just there’s so much going through my mind of like, how am I going to do this? What am I going to do? During the early days before Calder came into our life.

So that’s when I like reached out to other quad fathers. I wanted to find mentors. I wanted to be that mentee where I could learn from others and how they did it. So I just started talking with all these different quad fathers to get ideas on what worked, what didn’t work, lessons learned.

And also where I saw barriers, I wanted to come up with solutions.

So I wanted to be able to have the baby closer to me near my face without having to always have somebody hold on to the baby for me. So I ended up reaching out to Johns Hopkins students and their engineering department. And they built a baby wheelchair mount carrier to my power wheelchair so the baby could be right near my face.

So there’s there’s a lot of little things, but becoming a dad has been a dream, and it’s been… it’s been one of those things. It takes a village. Like, especially as a quad, as a quad father.

Physically, there’s so many things I cannot do, but mentally there’s so many things I do contribute to every single day and it’s just figuring those things out and truly being a quad dad is really about being the best partner possible to who you’re doing this with. I’m so… with Katie getting back to her, every chance I get through these early days of parenthood has been my best, my best contributions, and Calder’s finally, this year he took his first steps.

He’s been doing his first words three days ago, he had his first day of Preschool. And it’s just there’s so many first.

But as Calder’s been getting older, there’s so many more things we can do together.

In the early days, it was really about figuring out those touch points. How am I going to be? I can’t hold Calder, so how am I going to find ways to position him in front of me or have different clothing apparatus so that he could be on my chest and he can smell me? He could hear my heartbeat or different ways where I can have him in my lap without him falling off with different strap systems.

There’s been a lot of different things that we’ve brought to the table, but it’s allowed me to be a dad and it’s, you know, it’s different than most dads, but it’s still so beautiful and so many fun and beautiful memories we’ve had.

And, just… I’m so looking for so many more.

Alycia Anderson: That’s what life’s about. Like what you all are exuding is bright and light, and love and joy is what it looks like from an outsider looking in. And, congratulations on all of that.

Josh Basile: It’s a lot of work. It takes a team. To be a quad… to be a quad father… to be a quad partner, and you know there’s different people in our lives, whether it’s our caregivers, our family members, our friends, our neighbors, we would not be able to do it alone.

And, I just want to be able to say that out loud, and be able to be so grateful to have those people in my life.

And, yeah, and it’s just like, even this morning, like, so in the mornings when Calder wakes up, like I hear him running down the hallway saying Da-Da-Da. Then he comes to the door and then when I’m after finishing my morning program, which can take a few hours of going to the bathroom, doing stretching, getting dressed, eating breakfast. I’m ready to go from my bed to my chair and Calder’s favorite thing in the world is to get me in a sling, to control my lift system, he has the buttons and he pulls the lift system and he puts me in my chair and then brings it down and he’s like… his… he looks forward to doing that more than anything, and he’s just such a big little helper and it’s just… oh my God, I love the kid so much.

Alycia Anderson: I think that’s a great place to wrap up. I mean, what a beautiful story. We wrap up with the pushing forward moment and I ask you if there is any little motto or something that you can share with our listeners to give them a little inspiration of pushing forward moments.

Josh Basile: Absolutely. Before my injury, I did things one million ways, after my injury I now get to do it 1,000,000 new, one million different ways.

And, different can still be fun. Different can still be beautiful. It’s just a matter of having the right creativity and willingness to try. So, get out there. Have fun, experience the world around you. Find out what you want to do. What you don’t want to do. Because it’s all learning moments.

And there’s just so many… there’s so much beauty to experience in the world if you’re willing to get out there and experience it.

Alycia Anderson: I love you. I love you.

I don’t know how I was so lucky that our paths have crossed, but I’m so grateful for it.

This was really nice to connect again.

Josh Basile: And there’s so much more we’re going to do together.

Alycia Anderson: Thank you, and thank you so much to our listeners for being part of this pushing forward community.

I’m grateful for you.

This has been Pushing Forward with Alycia and that is how Josh and I roll.

We’ll see you next time.