Know Your Neighbor
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Just because a doctor tells you something [about your prospects in life] it doesn’t mean that it’s true. I wasn’t going to live my life based on what the doctor said. I was just going to do it and figure it out as I go. A lot of people follow me on Instagram who do not have a disability and I want them to know that’s a philosophy anyone can learn. Sometimes you might just be forced to learn it a little earlier.” —Allie Schmidt
At the age of 31, Allie Schmidt has built an impressive career as a lifestyle blogger, life coach, activist, corporate and marketing consultant, and wife and mother. It’s a remarkable resume for anyone her age, achieved because of her disability rather than in spite of it.
A native of White House, Tennessee, Schmidt attended MTSU and studied in Australia before beginning her marketing career. “I was working at my first corporate job when I realized that my motor skills were deteriorating,” she says. “Tasks as simple as buttoning my pants or writing my name became excruciatingly difficult. From there, my mid-20s were filled with anxiety and uncertainty, as I visited countless doctors trying to find an explanation for my sudden weakness.”
After a misdiagnosis of carpal tunnel syndrome, unnecessary surgery, a seemingly endless battery of tests, and mounting medical bills, the muscle control in her arms and hands continued deteriorating. Just before her 27th birthday, she learned her condition was far more serious than initially suspected — amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, a neurodegenerative disease resulting in the progressive loss of control of voluntary muscles and often, a greatly shortened lifespan.
“You can’t diagnose ALS, it’s a process of elimination,” Schmidt says. “It got to the point where the only diseases left on the table were ALS and a very rare subset of ALS where the weakness stays only in your arms. It’s one of those cases where there are so few people with the variant they can’t say confidently which way it will go. I don’t really go to doctors anymore, there’s no point. My arms are fully paralyzed now. There’s nothing to be done except continue living my life.”
Coming to terms with uncertainty meant making definite choices about the course of her life. “Before my diagnosis, I was pretty free-spirited,” Schmidt recalls. “I thought I would move to New York and get a bigger job in a bigger city, and keep traveling the world. When the diagnosis hit, my entire life changed and I had to figure out what I wanted my life to look like if I only had a few years left. For me, that meant finding someone that I really cared about and starting a family together.”
Schmidt and her husband, Charlie Friedman welcomed their son, Asher, into the world in December 2018, but having a child brought an awareness of the particular challenges disabled parents face. “When I was pregnant I assumed there would be products on the market that would be at least somewhat adaptive for someone with a disability, but there were not,” Schmidt says. Even items as basic as diapers and clothing present special challenges to disabled parents. Simple design changes such as magnetic catches instead of buttons and loops attached to the tabs of disposal diapers would be game-changers. “People with disabilities don’t necessarily always need one-off products created just for us,” Schmidt says. “Sometimes all it takes is including our perspectives earlier in the design process.”
The search for workarounds led her to social media where she began sharing her experiences and advocating for better parenting products. In March 2020, she launched disabilitydame.com, a site sharing her parenting experiences and filled with recommendations for products, tips for disabled parents, advice on navigating the often nightmarish American medical system, and more. Schmidt has also become an advocate and a paid consultant for products specifically designed to help disabled parents. As an activist-fundraiser, she works with the LiveLikeLou Foundation, raising funds for a proposed top-tier ALS research facility at Vanderbilt University Medical Center.
“The most satisfying thing for me is when people tell me that I’ve helped them just by reading my story because they’re going through the same thing,” Schmidt says. “They tell me they appreciate my optimism. I don’t want to perpetuate the narrative that disability is something tragic or something to be afraid of. I want to own it and show others that there can be a light at the end of the tunnel. It is really scary at the beginning, but you can find beauty in so many different ways.”
Follow Schmidt through her blog, disabilitydame.com, or on Instagram @disability_dame. To donate to VUMC’s proposed ALS research center, visit livelikelou.org/participant/DisabilityDame.