This post is part of the series 14 Questions, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, Numotion Director of Advocacy Strategy, Justin Richardson interviews Travis Roy, Founder of the Travis Roy Foundation.
Richardson: What do you see as the most important issue or issues facing those living with disability today? For those specifically living with spinal cord injuries?
Roy: Homecare is by far the biggest issue for people with spinal cord injuries, in particular for quadriplegics. Quite frankly, homecare is a pretty depressing issue. Too many people do not have proper homecare. This means they don't get enough hours of homecare from their insurance or Medicaid. This leaves people bound to their beds, relegated to their homes, dependent on family, and unemployed. Even if someone does have homecare coverage, it can be very difficult to find and maintain good people. Unfortunately, home health aides are underpaid and oftentimes underappreciated. It is rare for a home health aide or personal care attendant to make a decent wage and receive benefits. I would say the second biggest issue is access to cutting-edge adaptive equipment. It is incredible what people with disabilities can do these days if they just have the proper equipment. Whether it's the right wheelchair, a voice activated computer, or proper van modifications.
Richardson: Your injury occurred during a nationally televised college hockey game. I’ve often thought about what it would be like to watch video of my own injury. Do you ever view the footage from that game and if so, what are your thoughts when watching?
Roy: The video of my accident is a unique piece to my story. I use the video clip of my accident in my talks as a motivational speaker. Sometimes I will watch it, while other times I prefer not to. It depends on my mood. What amazes me is that every time I watch it I notice something different. Overall, as you can imagine, watching the video makes me sad. Living my dream in one moment, and then being a quadriplegic the next.
Richardson: What is the best piece of advice you would give to someone experiencing a recent spinal cord injury? What advice would you give to their loved ones?
Roy: I like to be pretty upfront as there is no sugarcoating a spinal cord injury. I tell recently injured people and their families that the first year is going to suck. I know "suck" is a bit of a crude word, but that's the word that you most commonly hear when dealing with paralysis. With that said, I quickly tell people that, as bad as it is now, for most spinal cord injured survivors things will get far better than they can imagine. Life will never be "normal" again, but you will find a routine. Lastly, and the most important advice, is not to give up after a bad experience or outing. I remember the first time I went to a restaurant after my accident. I literally cried right in the middle of the restaurant because it was such an unpleasant experience. I didn't want to go out to eat ever again, but I did give it a second chance and then a third. Slowly I learned what to expect and how to make the situation a little better. Now one of my favorite activities is going out to eat with some friends or family and eating something delicious. One of the keys to making progress after a spinal cord injury is to focus on the few things that do put a smile on your face and give you something to look forward to. It could be something as simple as seeing your wife, child, or parent walk into the room. One of the things I looked forward to was watching the NASCAR races on Sundays. It was a simple thing, but I would count down the days until the race came on and then I would let it take my mind away from my paralyzed life for just a few hours. Finding out what still puts a smile on your face, and then creating that moment/experience as often as possible, helps to build a life worth living.
Richardson: The Travis Roy Foundation is in part dedicated to funding research towards a cure for those living with Spinal Cord Injuries. In your opinion, how far away from a cure do you believe researchers are today? Do you anticipate a cure in your lifetime?
Roy: It all depends on how you define a "cure". For the first 10 years of my life the only "cure" that mattered to me was a 100% recovery. Twenty years later I can tell you I feel differently about what a "cure" would look like. Today I would settle for just being independent again. More specifically, if I could bathe, dress, feed and drive myself. In many ways, that would be a cure for me. Return of bowel, bladder, and sexual function would be another huge advancement. I think if you define "cure" along those lines, then I think there are therapies in research labs today that will provide that outcome. Unfortunately, these therapies still need to work through the clinical trial process which could easily take another 10 years. With regard to a "cure" that enables people to resume their lives as they were before their accident, my guess is it is still 20 years or more away. I'm hopeful I'm on the conservative side, but I will also say I thought we would be further along than where we are today.
Richardson: You have often spoke about the importance of access to the most appropriate complex rehab technology and adaptive equipment possible for those living with disability. If you had two minutes with a legislator capable of guaranteeing such access, what would you say to her/him?
Roy: I would say that people with significant disabilities are needlessly suffering. That our government is being shortsighted. If you provide disabled people with solid complex rehab equipment and appropriate homecare, you would have an additional workforce that is smart, capable, and wanting to be a productive part of society, not a burden, which is the current condition our government is leaving the disabled. If they spent a little more money, I truly believe they would get a much better return on their investment.
Richardson: The Travis Roy Foundation holds numerous fundraisers throughout the year. Which event do you enjoy the most and why?
Roy: That is a little bit like picking a favorite child. The hockey community has been absolutely incredible to the Travis Roy Foundation over the years. This year alone our hockey events will raise nearly $600,000. With that said, I still have a soft spot for our annual Travis Roy Foundation WIFFLE Ball Tournament. This year will mark the 17th year we have held the event. It has raised nearly $5 million. It is a very loyal group and the tournament weekend takes on a family atmosphere, both with personal friends and family, but also with so many of the participants that I've gotten to know over the years. It is a special weekend to say the least!
Richardson: Your story and professional work in the years since your injury has often led to media coverage. What are your thoughts on how disability is portrayed in the media?
Roy: This is a tough question. I watch news stories where they do profiles of people with disabilities. Often times they are a little quick to look for a happy ending. When you have a significant disability, there is no happy ending. Every day is a battle, even if you have highs sprinkled in.
Richardson: What is one thing people might be surprised to learn about you?
Roy: I am a big fan of motorsports, whether it be Formula One, Indy Car, NASCAR, or most any other form of auto racing. I look forward to race weekends.
Richardson: Other than your wheelchair, what do you think is the most important piece of adaptive equipment you regularly utilize? Is that piece of equipment typically covered by insurance?
Roy: My computers are an enormous piece of my independence and ability to work. I have a desktop and a laptop which enable me to work from wherever. With voice recognition software, I can type as quick if not faster than most people. Unfortunately, computers are generally not covered by insurance. Computers are one of the most requested items that the Travis Roy Foundation receives.
Richardson: In the days after your injury, if asked what you thought you would be doing 20+ years later, would you ever have imagined that you’d be living a life in part devoted to helping others in your own situation? At the time, what was your vision of the future?
Roy: Truthfully, I had no vision other than I would probably spend the rest of my life living with my parents in an addition to their home. When you are on a ventilator in the ICU, it's hard to believe there will ever be much quality of life. Fortunately, my life has gone in the complete opposite direction. The work of the Travis Roy Foundation provides me with an opportunity to give back and make a difference in the lives of people with paralysis. It is most certainly an underserved population. The TRF has given me a purpose in life. I also have my speaking career which provides me with an opportunity to make a living, which helps me to feel like I am a productive part of society.
Richardson: Unfortunately, people living with disabilities sometimes report feeling powerless to affect change. What would be your advice to anyone who feels as if their voice cannot make a difference?
Roy: As they say, the "squeaky wheel" generally gets the attention. I believe persistence is the most important tool when it comes to creating change. It's as simple as a regular email to your state or federal representative. It's about articulating a strong editorial piece to create awareness. There are so many places to get your voice out these days, whether it's social media or a protest of some sort. It's easier now than ever to mobilize. There are organizations out there, whether it be the Christopher and Dana Reeve Foundation, the United Paralysis Foundation, or a number of smaller local foundations that you can lend your energy to and absolutely make a difference. As I said in the beginning, it's all about persistence.
Richardson: You are a sports fan and often have the opportunity to attend sporting events across the country. Based on your experience, are the accessibility standards specific to arenas, concerts, and sporting events provided by the ADA adequate or do you believe there is room for improvement?
Roy: Sporting venues have made huge strides in the 22 years since I was paralyzed. Unfortunately, they have come at the detriment of the atmosphere because seating is more spread out with larger wheelchair seating areas and additional exits to meet improved fire standards. Stadiums used to be piled on top of the rink, basketball court, or field. Corporate suites are also to blame. With that said, I will take that trade off any day. The sightlines for people in wheelchairs have been vastly improved, along with bathrooms and other accommodations. Fenway Park did a masterful job with their renovations. They kept much of the intimacy that is Fenway Park, but in a number of areas tucked in fantastic wheelchair seating.
Richardson: What is one feature not currently available on any power wheelchair on the market today that you’d like to see available in the future?
Roy: Two things: The first being a thermometer so I know what the temperature is. People with paralysis often struggle to stay warm. Having the current temperature on the joystick display would be helpful. Not only for when you are outdoors, but also indoors. If you know it is warm in the room, but you are cold (or vice versa), chances are you might have an infection or a health issue starting up. I also wish they would better integrate cell phones/tablets. They are making progress, but more could be done.
Richardson: What would be the best way for those affected by spinal cord injury to connect with the Travis Roy Foundation?
Roy: I encourage people to visit the TravisRoyFoundation.org website, or send an email to info@TravisRoyFoundation.org.
In 1997 Travis and his family founded the Travis Roy Foundation to raise money and awareness for other quadriplegics and paraplegics and to support research for a cure. Travis received an outpouring of public support following a freak paralyzing injury playing ice hockey for the then NCAA champions Boston University Terriers. In an effort to give back, Travis created a tax exempt charitable entity to raise money for others. In addition to his work with the Foundation, Travis Roy is a popular motivational speaker and makes frequent appearances in and around New England and across the country.