Community Spotlight: I am…Viola Dwyer

February 28 is Rare Disease Day. Throughout the month—in recognition of our Redefining Rare initiative—we have been posting stories about SMA community members, showcasing their greatest passions, hobbies, and tidbits of their life.

Viola Dwyer is from a suburb of Philadelphia and recently pivoted from her corporate job in the financial sector to creating a YouTube channel, called The Ginchiest, with her husband, Dan. On the channel, they primarily speak about their disability experience. She has spinal muscular atrophy (SMA).

Viola gives credit to her lifelong friend for introducing her to Dan nine years ago. “A week after meeting, she encouraged us to ride the train to D.C. together to visit and celebrate her birthday. That day Dan and I spent traveling together was when we started to feel the sparks,” Viola remembers.

Viola has a Bachelor of Arts from Johns Hopkins University and an MBA from Duke University. She feels fortunate to have attended schools that challenged her and exposed her to diverse groups of people. Viola also studied abroad for a semester as an undergraduate student, where she did face some accessibility issues while living Seville, Spain.

“The issues I faced were not the ones you would commonly think of,” she began. “This was back in 2001 and taxis in Seville and other Spanish cities were remarkably accessible. They had a fold out ramp in the rear with which I could ride my power wheelchair right in. I called when I needed them, and they would show up about 15 mins later. It was so freeing.”

Viola continues, “The issues I faced were more from the care perspective. I contracted a pneumonia in Spain, and I had to get medical care. It was a scary time because it took hopping around to three hospitals before I found a physician who had some idea of how to treat patients with SMA. I was very fortunate.”

Her (mostly) positive travel experiences has made Viola passionate about exploring new places. She and Dan love to explore their local neighborhood or a country halfway around the world. “I enjoy reading books (typically nonfiction), discovering a new documentary with Dan, or just enjoying the little things such as sipping on a frothy chai latte from a local cafe or playing with a dog (I’ve still never owned my own yet!),” shared Viola.

Viola’s advice for studying abroad with a disability:

It never hurts to over plan. Do all you can to prepare for the worst-case scenarios. Talk to the administration that will be in the country of your choosing ahead of time. Befriend them. Let them know your needs. They were my advocates and supported me when I was ill. There is so much information on housing details, street layouts, and accessible transportation options that can be gathered ahead of time that make traveling with a disability easier. But we must do the extensive work before we travel.




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