Adults With SMA: Hugo Trevino

Hugo Trevino is a prominent spokesperson within the SMA community, and currently works as a resource specialist for the Muscular Dystrophy Association. After completing his undergraduate degree at the University of Illinois, he’s now pursuing a Master’s degree at Loyola University in Chicago.

The following is an interview with Hugo, discussing both his disability advocacy and career.

Kevin Schaefer: As a resource specialist with the Muscular Dystrophy Association, what does your daily work life entail?

Hugo Trevino: My position was created because the MDA saw a need to help young adults learn how to navigate life and answer all the questions one might have about being independent. I am here to be a one-stop shop for all or any questions families might have regarding resources; and if even if the MDA doesn’t offer a certain resource, we want to connect families to that resource/organization.

I also love that I get to work with newly diagnosed families, and returning patients get connected to their MDA Care Centers and see specialists who know about rare muscle diseases. Every day I get to interact with families by email and over the phone. The MDA as a whole covers over 43 different neuromuscular diseases which include more than nine different types of muscular dystrophies. It is a very exciting time for research and part of my job is also connecting people to the latest research and clinical trial information. When new treatments are available, I get to be the first person families call to learn about the first steps in order to see if they qualify for groundbreaking treatments. I love that I am now hearing patients say that they want their disease to be the next treatment or cure that MDA helps fund!

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KS: You were recently a keynote speaker for a disability program at your alma mater. What was this experience like and what was the focus of your message?

HT: Every year, the University of Illinois at Urbana Champaign has a disability awareness event where they have a group of students participate in a panel and share their story of what it’s like to live with a disability. I remember being on the board of students who helped plan the event. We would always bring down someone who we thought could inspire others and someone who we admired. I remember telling myself that I wanted to one day be the keynote speaker.

I was given the privilege and extreme honor of having current students choose me to be the 7th Annual Disability Awareness Program keynote speaker. I gave a speech entitled, “Disability and Intersectionality – Perspectives on Social Justice.” I was able to talk about my intersecting identities of being Latino and a physically disabled gay man. With my perspective, I tried opening the minds of those who don’t know what people with disabilities go through and introduce myself to those who have never met anyone with a disability. Even though I am very proud of all of my identities, self-acceptance was a journey. All of my identities do not always intersect well with one another, and that creates constant conflict that I must resolve in order to knock down barriers, perceptions and stereotypes others might have.

KS: You’ve also done a lot of traveling over the years, both in the U.S. and abroad. In addition to studying abroad while you were in college, you also were in Vietnam earlier this year. Could you talk about some of the obstacles related to traveling as someone with SMA, and how you’ve overcome those challenges?

HT: During my undergraduate career I was able to study abroad in Costa Rica, China and Taiwan. When traveling to Costa Rica, I had the advantage of knowing the language, and because of that I was able to travel through the country using a combination of both my manual and power wheelchair. When going abroad to China and Taiwan, and most recently for my graduate program in Vietnam, I did not know the language for any of those three countries. I was forced to give up some independence and only travel in my manual wheelchair.

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I had to make sure that my personal care assistant (who was traveling with me) knew the full extent of how much I would rely on them and how much labor they would have to put in to push me around in all types of terrain. I always make sure to practice being in my manual wheelchair a few days before my trip to work out any issues I might have. I take an extra neck pillow and gait belts to make sure I can strap my feet, chest and waist safely into the chair. Even though the airline only allows one luggage bag and a carry-on, I take about six bags with me on the plane. I take my chair apart as much as possible and carry onto the plane things like my seat cushion, foot plates, armrests, lateral support, headrest, and any other parts that can come apart. I recommend labeling all parts of your chair and even laminating your signs to make sure they are read and not torn off.

I make sure to constantly communicate with my personal care assistants while on the trip. The goal is to explore and see as much of the country as possible, yet I must also keep in mind that they are not robots and require breaks. I have sometimes had to cancel plans/trips completely and do more accessible plans/trips to make sure my caregiver on the trip does not get burnt out, or even worse, get hurt. If they get injured, my whole trip is cancelled.

KS: What advice do you have for other SMA individuals about living independently, having a career and anything else that many people think is beyond our ability to achieve?

HT: I think it’s important to dream big. Push yourself to limits you might not think possible. It is also important to constantly advocate for yourself and make sure that others truly understand your disease and abilities.

Having a disability means having to always plan five steps ahead, but it also means that you might have to re-evaluate and change your plan(s) constantly. Our goals might be the same as everyone else, but the journey doesn’t have to be the same or as fast. The point is to achieve that goal and actively work toward bettering ourselves, those around us and most importantly, bettering the world.

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