I’m Beeshernah Ceus, Accessible Pharmacy Services for the Blind’s student intern. I had the pleasure of speaking with Josh Basile, a disability rights advocate, Board Member of United Spinal Association, founder of Determined2Heal, trial attorney, and much more. Josh is a 4-5 quadriplegic and his involvement, passion, and advocacy in the disability community is so profound, his impact shines through all of the projects he works on, and the individuals he works with. Read more to learn about all of the fantastic work Josh does in the spinal cord community.
Beeshernah: Good morning, my name is Beeshernah and it’s a pleasure to meet you. Can you please introduce yourself?
Joshua: Sure, my name is Josh Basile. I'm a 4-5 quadriplegic and I’m paralyzed below my shoulders. I’m a power wheelchair user, trial attorney, and disability rights advocate. I am the Community Relations Manager at accessiBe, and a board member of the United Spinal Association for the last five years. I also sit on the board of the Independent Living Council in Maryland which represents our seven CILs, Centers for Independent Living. They really try to be as active as possible to break down barriers for people with disabilities within independent living, employment, accessibility, and just promoting active, meaningful lives where we're outside of our homes and, and kind of turning heads.
Beeshernah: Wow, I can see that you do so many different things while representing the disable community from various positions. You mentioned that you sit on the board of the United Spinal Association. What are the missions and values of this organization?
Joshua: We are one of the largest spinal cord injury organizations serving hundreds of thousands of members and representing people with paralysis all across the country. One of our biggest things is our push for advocacy. We want to make sure that we understand that our futures are in our hands and that our wheels are heard loudly.
Every year we have a role on Capitol Hill where we bring in around a hundred people in power, and annual wheelchairs from the community all across the country. And we do a one-day event where we get educated on all the different bills and legislative priorities. Then we roll on Capitol Hill and meet with all of our legislators to let them know that these different pieces of the puzzle for our lives are important and we need their support. So we do a lot around advocacy. We do a lot around quality of life by providing support groups.
We have over 50 chapters across the country. Each chapter kind of takes on its own mission, of basically making changes within that state, within that local area, but also providing different voices for the community to know that they're not alone. So if somebody gets injured in that area, there's other members that are there to have their back to provide support, answer questions, and just be there. Support groups are just so important to make sure that we are a community and that we're not just a bunch of individuals on our own, and if we can be beyond this journey together, we're going to be stronger.
We have a slogan: “Strong Wheeled Together” and it's so important that we're all on this journey together so that we can have power and numbers. I'd love to say I live in the Washington DC area and when I wheel down the street, I can turn a few heads. If I wheel down the street with 10, 20 of my wheelchair advocates and friends, everybody's turning their end saying, what's going on? What's this about, this is awesome. Power numbers that are so important within the advocacy game. Of actually addressing problems, coming up with solutions and then being proactive with numbers to actually get things done. And then we have wonderful pathways to employment programs where we help people with disabilities and especially with paralysis, help navigate within their disability employment journey, wherever they're at and help navigate the benefits programs, find jobs, and build resumes. Wherever they're at, within their employment journey, we’re here to provide support for them.
Beeshernah: It’s clear to see that you are very passionate about advocacy. It’s important because the voices of those people need to be heard to make it a better community and overall, better world. I'm curious to know what is the background of what it is that you do with the organization and how did you get started to be in this position?
Joshua: I got involved with the United Spinal Association because around 18 years ago, when I was 18 years old, I was on a family vacation at the beach in the ocean. A wave picked me up, threw me over my boogie board and slammed me on my head. And that day I shattered my neck. I became paralyzed below my shoulders and it changed everything for me. And I remember while being in different hospital systems in the early days, I got a United Spinal backpack with different information and support groups and everything, about my new world. They were kind of being able to say, if you need support as an organization, we've got your back. So that was my first taste and touch with United Spinal, which was very early on in my journey. And then later on, I ended up starting to do more.
I have my own nonprofit called Determined2Heal and we focus on simplifying the transition into life with paralysis for newly injured families. And we created a website called SPINALpedia.com and it’s a video mentoring website. We wanted to make sure that the community always has stories to learn from. And when you make a video of something, it lasts forever. So what we did was we took videos and we made them a lot easier to search. Based on categories, subcategories of all aspects of daily living, but also each video has its own tag system based on physical functionality. For everyone, if I was one level above my injury, I could be on a ventilator, one level below my injury. I could start getting use of my biceps one level below that triceps one level below that another finger. So every level of a spinal cord injury is a different world. So with our videos, we break it down by physical functionality and make it organized. To date since 2007, I think we now have over 23,000 videos for people in the community to search from. Wow. And then if you put your exact functionality in, you can have anywhere from 500 to a 1,000 people within your unique world to show you what's possible. Also with the foundation we bring families on adventures to get them out of their homes and show them that there's so much you can do with a willingness to try with a little creativity.
And that's how I got connected with United Spinal again. Years later I ended up reaching out to them because I wanted to charter a 60 foot catamaran from Key West to Cuba and back. I wanted to introduce a sport I invented called slingshot golf. During that sailing ride, I had two other families that were paralyzed that I brought on the journey and I asked for United Spinal to be a sponsor. I got five other organizations to sponsor the voyage and it ended up being documented by ESPN. I got reconnected with United Spinal and next thing I know the President and CEO of United Spinal asked me to join the board.
That was five years ago and I've been loving being a part of the organization. From the leadership position to really see the incredible work they do and then guide the organization into the future. I sit on the strategic planning committee, the nomination committee, and just try to be as active as possible with the organization, because they're just doing incredible work.
Beeshernah: That is an amazing story to see how everything came full circle. Thank you for sharing. When it comes to you sitting on the board, how many individuals or consumers does the organization serve?
Joshua: There’s around 300,000 people with spinal cord injuries in the U.S and over 1.2 million living with, with paralysis, I can get you the exact statistics the most updated statistics off the Christopher Reeves statistics website. Then there's around 3 million wheelchair users across the country. So I'm a big believer that the United Spinal organization, yes it's, spinal in the title, but really we all have a common connection with wheelchairs.
We live very similar lives and getting around the world looks differently depending on what your physical functionality is. So being able to connect everybody to the right information, the right mentors and push people in the right direction makes it so that you don't have to learn everything by yourself. There's nothing in the rule book that says that you have to reinvent the wheel with this new life, if you become paralyzed or need a wheelchair to get around. Learning from each other there’s just so much value within there.
Beeshernah: I absolutely agree. In terms of employment, how many of your employees or staff are wheelchair users?
Joshua: Our national board is made up of more than 51% wheelchair users. In our staff, we have many that are wheelchair users that are paralyzed. Our CEO, Vincenzo Piscopo is paralyzed from the waist down and is a paraplegic. So we have a lot of representation within the organization that are paralyzed, which is fantastic. That just helps us deliver services better because our employees speak spinal cords and I’m very proud of that as well within the organization.
Beeshernah: That leads right to my follow up question, which is what makes you proud to work with this organization in particular and what inspired you to become a board member?
Joshua: Well, what inspired me to become a board member is the mentor-mentee kind of relationship. You know, early on in my injury, I had so many mentors that showed me what's possible. That motivated me to believe that I still had a really bright future, that things were possible. I remember early on, I met this guy, Tim Stratton. So he was actually paralyzed on the same beach as me 10 years prior. He was an all American football player, a quarterback and had a full ride to Penn State and broke his neck. When he returned home he went to community college and did undergrad at the University of Maryland. He also graduated from law school, he then fell in love and got married, and had kids. And I always said I was going to follow in Tim’s wheel tracks, if he can do it I can do it too. I did the exact same thing. I went to community college at the University of Maryland. I graduated magna cum laude from law school without ever flipping a page with my fingers. I then fell in love, but I am not married yet because I have to change a lot to get married because I’ll lose my caregiving benefits if I get married. Four months ago I became a father to a little baby boy. Life goes on in beautiful ways and I’m just excited to wake up and fight for my future, and my family’s future. And yes, I can’t really move a finger, an arm, or a leg but I have a strong mind and a strong will, and creativity. I have a lot to contribute to the world, and I’m just packaging it in my own way.
Tim was also my mentor and it motivated me to become mentors to others. That’s another reason why I wanted to join United Spinal because I wanted to be more involved in their community that they’re able to access. The more I can connect with the community The more I feel like I’m going to be living a better life for myself and contributing to other lives. They do an amazing job of connecting with tens of thousands of people every single day all across the country.
Beeshernah: It’s great to hear that you had a wonderful mentor that also inspired you to mentor others. What services and programs does United Spinal provide?
Joshua: We have our Resource Center so anybody at any moment can call in and have one-on-one support from a well trained and educated member of the team that knows how to guide people within their paralysis journey. We have the pathways to employment program which helps people with disabilities not only get motivated to pursue work, but get the vocational training they need. Get the education they need for the hiring process and then also be able to navigate the benefits planning which can be very complicated when you're in the system on Social Security and you rely on Medicaid and Medicare to have health care. So we help families in that respect. We have a Vets First Program for veterans that have been paralyzed and that are impacted by spinal cord injury and spinal cord injury disorders. We have a Tech Access Board where we work with technology companies to be able to provide more technology for people with paralysis and make sure it's built into their systems. Hopefully from the beginning, but if not to be able to make sure that people with disabilities are able to use their technologies.
Beeshernah: It’s amazing to see all of the services that are available to members and their families. You mentioned that you have your own nonprofit called Determined2Heal, how many people do you employ?
Joshua: Right now Determined2Heal has three employees and all three are paralyzed and have quadriplegia. We have a lot of volunteers and support staff, many of which are paralyzed or are family members or friends of the paralysis community. We make sure that anybody that joins the team has touches and connections to the disability or spinal cord injury community.
Beeshernah: It’s great to see the representation in the staff that you employ which helps the members feel more connected. Thank you again for taking the time to have this interview. Accessible Pharmacy and I enjoyed learning more about what you do, and are looking forward to seeing more from you in the future!
Joshua: Absolutely, it was a great phone interview and a pleasure meeting you!
Determined2Heal: https://www.determined2heal.org/
United Spinal Association: https://unitedspinal.org/
SPINALpedia: https://spinalpedia.com/