Employment

Help Wanted

Sarah Schwegel, an organizing and advocacy specialist with Paraquad in St. Louis, began working from home last March as the COVID-19 pandemic emerged in the United States. Having spinal muscular atrophy (SMA), Sarah realized that she was at higher risk for complications if she contracted the illness. Her employer supported her request to work remotely.

Creativity and Adaptability

As the novel coronavirus pandemic forced people to stay home and brought job loss or economic instability to many, a snapshot of the neuromuscular disease community shows examples of creativity and adaptability in the face of unexpected challenges. In three stories, members of our community share how they handled the pandemic’s financial impact.

Making the Workplace Accessible

When Josh Moser transitioned from college to a career 10 years ago, having Duchenne muscular dystrophy (DMD) was a concern he wasn’t quite sure how to handle. He felt nervous talking about his needs, he recalls, worried that it might sabotage his job prospects. Fortunately, the financial services firm where he was temping appreciated his work and asked him to apply for a full-time position as a processing associate. After he accepted the offer, the company worked with him to make sure he could perform his job duties effectively.

Designing Her Dreams

Allie Williams, a 25-year-old who lives with Charcot-Marie-Tooth (CMT) disease, earned her master’s degree in biomedical engineering from Texas A&M University in 2017. Williams always knew she wanted to help individuals with disabilities, but it wasn’t until her junior year of high school that she found the right fit.

Enter Stage Right

Matt Plummer, a 30-year-old graphic, web and thatrical designer in Fort Worth, Texas, will never forget the role that introduced him to the world of theater and art during his sophomore year of high school: Townsperson No. 3 in Arthur Miller’s The Crucible. “I think a lot of people in my situation have a hard time expressing themselves,” says Plummer, who lives with spinal muscular atrophy (SMA). “That experience really gave me a creative, artistic outlet to express myself and everything about me.”

Career Starters

For Victoria Haire, landing a summer internship in the Dallas MDA office this year wasn’t simply a way to see what it was like to work in the business world; it was life-changing.Haire, who hails from Louisville, Ky., was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 5. As part of her five-week internship with MDA, she got to work in an MDA Care Center alongside MDA’s family care specialists. “I knew right in that moment that this is what I need to do,” says Haire, 21, a University of Southern Illinois student studying communications with a minor in social work. “I texted my parents on the first day and said, ‘This is my calling.’”

Support System

When Cindi Reamer, a 58-year-old auditor and coder with limb-girdle muscular dystrophy (LGMD) was a child in Fort Wayne, Ind., she told her orthopedist that she wanted to work for him one day. At age 20, she did just that. Steven Glock, M.D., hired her as a telephone switchboard operator, and she has been working in his practice ever since, moving from the switchboard into coding.

Disclosing Disability

Talking with employers about neuromuscular disease can be challenging. Given the broad spectrum of neuromuscular diseases and their often unpredictable nature, some may find it difficult to navigate exactly when and how much to disclose. “The very first thing a person needs to consider is why you want to disclose,” says Sharon Rennert, senior attorney advisor at the U.S. Equal Employment Opportunity Commission (EEOC). Doing so for the right reason at the right time keeps the focus on your performance as an employee, rather than on your disability.

Learning by Heart

Keilondi Johnson, a 39-year-old teacher from Virginia, who has spinal muscular atrophy (SMA), always wanted to work with children. When she got to college, she thought she wanted to go on to study the law and become a family lawyer. However, that changed when Johnson took on an internship at a campus day care center as part of her studies.

Passion Projects: Q&A with Author and Filmmaker Crystal Emery

Author, producer and filmmaker Crystal Emery, who has Charcot-Marie-Tooth disease (CMT), wrote and directed her first play in the fifth grade, and she hasn’t stopped telling stories since then. She’s currently touring the country with her documentary film, “Black Women in Medicine,” which can be seen on PBS, and her foundation, URU, The Right To Be Inc. Quest spoke with Emery over the phone about the film, her passion for the arts and more.

MDA Resource Center: We’re Here For You

Our trained specialists are here to provide one-on-one support for every part of your journey. Send a message below or call us at 1-833-ASK-MDA1 (1-833-275-6321). If you live outside the U.S., we may be able to connect you to muscular dystrophy groups in your area, but MDA programs are only available in the U.S.

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