By Martha Hewett @martha_hewett
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Videographer / director: Adam Gray
Producer: Martha Hewett, James Thorne
Editor: James Thorne
Alex Dacy, 25, from Chicago, was born with Spinal Muscular Atrophy (SMA), a progressive, genetic disease that causes muscle wasting and mobility problems.
Under the name, ‘Wheelchair Rapunzel’, Alex has become an online advocate for disabled-body positivity, often Instagramming ‘risqué’ photos of herself in her underwear to break the stigmas.
She has also become an entrepreneur - creating merchandise that raises awareness for disabled bodies.
Alex told Barcroft TV: “There is a body positivity movement happening today and it’s so important for people with disabilities to be represented in this movement.
“People with disabilities can feel sexy in their bodies and we do.”
Alex was born with type 2 SMA, which meant she was never able to walk.
When she was first diagnosed, the doctors only gave her two years to live.
Alex’s mum, Jackie, said: “I thought she had a dislocated hip or an orthopaedic problem – the doctors told me it was no problem until she was finally diagnosed with SMA.
“We were shocked and didn’t know what it meant, they only gave her so many years to live.”
Despite this terrifying prognosis, Alex fought to defy what her parents had been told.
“SMA is a very serious disease, but she did very well and continued to thrive without much complication,” explained Jackie.
However, in Alex’s teen years, she became very thin, to the point of almost needing a feeding tube.
SMA affects the muscles that control the head and neck, which made pushing food down difficult.
“With my disease, you lose the ability to swallow, which meant I was not able to eat food.
“I learned a way around it – my trick is adding tons of sauce to everything!” Alex said.
This, along with other SMA-related problems, meant she wasn’t always the positive woman you see on Instagram now.
“I haven’t always been super confident about my body – I have scoliosis so my body is twisted and my ribs protrude – I have a different body to most people.”
After noticing how little bodies such as hers are represented in the body positivity movement, Alex decided to put herself out there.
“I started Instagramming more formally about a year ago.
“I just love having the ability to advocate for everyone on a large scale like Instagram,” Alex said.
She has uploaded a range of photos on her profile, always receiving thousands of likes and a wave of positive comments.
There are pictures of her posing in her underwear to nude shots with words such as ‘sexy’, ‘strong’ and ‘beautiful’ drawn on her body.
“I post pictures that are more risqué – I recently posted a picture of me in a thong to exemplify that people with disabilities have booties that we want to show off.
“It got a lot of attention and most of it was positive and it paid off.”
Feeling inspired by advocacy led to Alex creating merchandise to raise awareness for disabled body image.
Her merchandise, which features the slogans, ‘Love Your Genes’ and ‘Disabled Bodies Matter’, aims to make people feel confident about their bodies.
“I’m not a designer by any means, so I had to learn everything myself. It’s mainly me with the help of some friends.
“I sell t-shirts, hoodies and bracelets – all sorts of really cool things.” Alex added.
For Jackie, she feels immense pride in watching Alex work so hard to make others feel better about themselves.
“Alex makes me proud every day – watching her happiness as those orders roll in and watching her face light up when her followers have something beautiful to say to her – all those things are the joy in my life.”
In December 2016, Spinraza became the first approved drug in the US to help treat SMA.
Alex has been receiving this treatment with the hope of it stopping the progression of her disease.
“Thanks to Spinraza, I’ve felt a lot of improvements, particularly in arm strength which is a huge deal for someone with SMA,” she explained.
The drug has given Alex hope that her quality of life won’t decline as the disease progresses, allowing her to continue teaching people on the danger of stigmas surrounding disability.
“A huge misconception about my disability – where do I begin? That people can’t feel sexy or have romantic relationships.
“I’ve never really thought about my disability, I just always knew I have this thing, and if my friends have to drag me from my ankles to get from A to B then that is what we gotta do.”