Jennifer, FL

muscular dystrophy

Jennifer lives in Orlando, Florida. For ten years she was a software engineer, having received her bachelor’s degree in computer science with a minor in piano performance. Music has always been a hobby for her, but she realized she could make it more than just a fun hobby after a life altering diagnosis came her way.

Jennifer grew up with a brother who had muscular dystrophy. He was in a wheelchair by age ten and passed away when he was twenty-one. She knew that she was a genetic carrier for the disease but had no idea she also had a milder form of it. Muscular dystrophy is extremely rare in women: less than five percent of women who are genetic carriers develop the disease themselves. In 2009, fatigue was the first symptom Jennifer acquired. She was weak, dizzy, and tired far quicker than normal. She explained, “it took me about three years to get to the right doctor and they said, ‘you have muscular dystrophy, you have the same muscular dystrophy that your bother would have had.’” With muscular dystrophy it progresses over time, “my strength is being taken away from me and with that, functionality,” she had to learn as she goes. On a good day, Jennifer can walk within a fifteen-foot radius of her wheelchair, but on a bad day it can be extremely difficult to reach for items, stand up, etc. She begins to lose the strength and ability to use her large muscles in her body.

After applying for disability and only being able to work part time, she reconsidered her career and shifted to creating her own music business since she does not need strength to play the piano. Her business became successful quickly. “In a span of less than five years of launching a brand-new music business, I was known in the local professional music community.” She is currently accepting her new reality of needing to stay in her wheelchair when playing the piano and singing. Within years past, she was able to sit at a bench, or on a stool, but she is beginning to need more direct support to keep herself upright.

Jennifer does not have a caregiver, but she does have a four-year-old golden retriever service dog named Tonka. He was given to Jennifer for free through the organization called New Horizons Service Dogs. They have been together for about two years and Jennifer explained that he can do anything that involves tugging, pulling, or reaching. Some of the tasks Tonka does to help Jennifer is load and unload the washing machine, open and close doors, and pick up and bring items to Jennifer. At the grocery store he can even “pick up cans on the bottom shelf and get up on his hind legs and put them in the cart.” She likes to joke that if Tonka picks out a toy, she makes him pay for it because, she hands him the credit card and he can get up on this hind legs and hand it to the cashier.

If you are interested in learning more about what Tonka can do feel free to follow Tonka on Instagram (@tonkatheservicedog).

Regarding the challenges Jennifer faces with the built environment, she expressed her frustration with heavy doors, spaces that are not wide enough, shelves that are not easy to reach, and the location of curb cuts and ramps. Her situation is different because it is not just her and her wheelchair navigating through spaces. She also has her service dog. She often finds herself outside of the entryway into a building waiting for a stranger to come by to open the heavy door for her and her dog.

She wonders why more architects, designers, and builders do not incorporate or include a disabled person to “test drive” designs. She believes this could easily help solve or alleviate some of the obstacles she and others face in a day-to-day basis.