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While most people are having a hard time adjusting to the restrictions put in place to slow the spread of coronavirus, Alex Dacy is used to taking extra precautions for her health. Dacy, a 26-year-old from Chicago, has spinal muscular atrophy, a neuromuscular disorder that results in muscle decay. Despite her diagnosis, she's proving that there's nothing she can't do—from posing in boudoir shoots to running her own clothing line.
When Dacy was 18 months old, her mother noticed that her physical development seemed slow. She took her daughter to multiple doctors, and none found anything wrong. Still, she was convinced something more serious was going on with her daughter's health.
"I guess you could call it mother's instinct, but apparently my mom knew that I wasn't just behind developmentally," Dacy tells Health.
After a few more weeks of doctor appointments, her mother finally got an answer. Dacy was diagnosed with spinal muscular atrophy (SMA), a lifelong genetic disorder brought on after motor neurons that control muscle movement atrophy. Dacy has SMA type II, a form of the condition that usually develops before a child's first birthday and can cause tremors, scoliosis, and respiratory muscle weakness. It can also worsen with age.
Because of her condition, Dacy said she has never been able to stand, her body is smaller than that of most women her age, and she's used a wheelchair for as long as she can remember. But her parents made sure that her childhood wouldn't be any different than her peers.
"I had a pretty normal childhood," says Dacy. "My parents never really focused too much on my disability, which honestly did me a lot of good. The fact that they treated me like any other kid really helped me fit in. I did everything other kids did."
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Still, some of the fallout from SMA were difficult to surmount. As a teen, she lost a lot of weight when the muscles in her neck and throat became so weak, she couldn't swallow solid food. Luckily, Dacy figured out a workaround by adding liquids to her meals, as well as continuing to practice using those muscles as much as she could.
That's just one example of how she had to find solutions to the challenges of her condition, so she can have a more independent life. When she does need assistance, her mom and other caregivers step in.
"I do need help with a lot of things, like getting dressed, brushing my hair, and making food," says Dacy, "But I can do my makeup, feed myself, and have learned to rely less and less on help in my day-to-day."
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Instead of focusing on the challenges, Dacy concentrates on all the things she can do. One of the biggest obstacles she faces, however, is how society views people in wheelchairs.
"I never really looked at my disability as something that's holding me back, because for me, this has been my entire life," she says. "While I know there's a long list of things I probably couldn't do—like be a surgeon or a ballet dancer—the biggest setback is society's misconceptions about me and my condition."
Instead of letting that stop her, Dacy is working to defy beauty standards in her own way. She regularly posts boudoir photos to her Instagram account, @wheelchair_rapunzel, to prove that sexy can come in all shapes and sizes.
As she attracted more followers, Dacy realized she had a perfect platform to raise awareness about her condition. She decided to start her own clothing line, which she named after her Instagram account; it reflects the theme of self-love.
Dacy now has over 71K followers and a full online clothing store selling apparel from size small to 5XL. Her clothes feature body positive messages that she hopes will make the general public more aware of people with disabilities.
The coronavirus outbreak—which hits people with certain preexisting conditions harder—is one of the biggest reasons she wants to continue to advocate for disabled bodies. "My lung capacity is at about 20%, which is common for a lot of people with SMA. If I were to get sick, I could have respiratory failure which is potentially fatal," explains Dacy. "A lot of disabled people have to worry about being extra cautious during a normal flu season, so this pandemic is giving able bodies a firsthand look at how [disabled bodies] have to live our entire lives."
Dacy says that she hopes her social media presence will help remind people that their actions during this pandemic could directly affect disabled lives. Ultimately, she hopes people will begin respecting the disabled the way they want to be respected.
"People always look at disabled people as some sort of inspiration, but I want people to just realize we're just like everyone else," says Dacy. "Be considerate during this pandemic and remember how our community is at a higher risk, but do it because you respect us as people."
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