A Woman With a Disability Documents Her Pregnancy to “End the Stigma”

Alex Dacy, also known as Wheelchair Rapunzel, was born with a rare, genetic disability called spinal muscular atrophy, a genetic disease that causes muscle wasting and mobility problems. Alexa has become a strong voice for the things she is passionate about, which include ending the stigma surrounding disabled people.

She became a passionate advocate for body positivity long before her pregnancy.

After graduating from college, Alex tried to get a job, but she faced a lot of rejection. “I was discouraged and wanted to give up. That’s when I started sharing my story on Instagram to have an outlet, to feel included in society, and to contribute, despite no one hiring me.”

She added, “One of the main things I focus on, as a disability activist, is disabled body positivity and acceptance. Growing up, I never knew I was allowed to celebrate my body. The media conveyed that disabled people only exist to inspire people and that our bodies are defective and not worthy of pleasure.”

Alex and her partner faced criticism for being in an inter-abled relationship.

Alex and Noah are an inter-abled couple, whose love has faced a lot of criticism both in life and on social media. “When we go out, we get looks almost to the point where people break their necks,” said Noah. When the couple announced the news about their pregnancy online, there was a huge amount of negative backlash.

Fighting negativity on social media after a pregnancy announcement.

When announcing her pregnancy, Alex admitted she never planned on birthing a child with her own body, but she was going to “take in every single moment of this amazing thing my body is undertaking.” Since this moment, she has been flooded with ableist questions and remarks on social media, to which she has been responding.

Alex has been documenting her pregnancy to hopefully end the stigma. “Disabled parenthood is so heavily stigmatized in society and I really want to open up conversations about this topic.”

But she gets candid that the negativity she encounters is very mentally exhausting, “I’ve always wanted to be a mom. But people were saying, ’Terminate the pregnancy,’ ’It might have your disease,’ ’How are you going to care for a baby?’”

A high-risk pregnancy

Since getting pregnant unexpectedly, she’s had to stop her treatment for SMA, because it can be dangerous for the baby. As Alex admitted, everything became a lot harder, because she used to be a lot more physically independent, “I had never thought that my boyfriend would be my full-time caregiver.”

“I am considered a high-risk pregnancy, but I am being seen by a full team of doctors,” she said. “A lot of women with my disease give birth... Yes, it is pretty much hell, but it is possible.” Alex added the main issue will likely be her respiratory health, and she may require a C-section.

Despite all the difficulties, Alex gave birth to a beautiful baby girl. “First skin-to-skin moment was a moment I’ll never forget. Feeling her chest on mine. Holding her to me, my heart beating with hers. After everything we went through together,” wrote the young mom in a touching Instagram post.