A 27-year-old woman with a rare genetic disorder who could only identify with Mickey Mouse while growing up due to the shape of the Disney character’s hands is trying to be the role model she never had as a social media influencer, to show people with disabilities they are “fully worthy and capable” of achieving anything.
Rochelle Muir, who lives in Colorado, was born with ectrodactyly, which means she has three fingers and a thumb on each hand, two toes on her right foot, and four toes on her left foot.
The condition causes difficulties in buying footwear, and with relationships – with one of her ex-boyfriends splitting up with her due to the possibility of their child being born with ectrodactyly – but she is now happily partnered with Charles, 31, a primary school counsellor who, along with her father Bill, is her “biggest cheerleader”.
Rochelle, who is a client engagement manager for a healthcare company, could identify with characters such as Mickey Mouse growing up as he also has four digits, but she said “being like a cartoon is not exactly the role model you want”.
She now posts pictures and videos on her social media platforms to educate others about ectrodactyly, raise awareness of the limb difference community, and share her hobbies, including gaming.
“I remember specifically always loving the characters which had brown hair whenever they were in Barbie movies because I thought, ‘Oh, she’s like me!’,” she told PA Real Life.
“But I never had that feeling when it came to my limb differences.”
Rochelle has never let the disorder hold her back despite being teased and bullied at school, but when she entered the dating world in her 20s, she faced rejection multiple times and felt she was not “capable or worthy of having an amazing relationship”.
“I’ve never been rejected over something that I couldn’t change about myself, something I was born with, and that was probably the first hit to my confidence with my limb differences where I felt awful about being born the way I am, about being disabled,” she said.
“I just thought, I’m never going to find a meaningful relationship, I’m not worthy, I’m not capable, and that was the dialogue that kept going through my brain over and over again.”
Rochelle has since removed “that nasty little voice out of (her) head”, found love with partner Charles, and shared her story publicly on social media, as she wants to “uplift” others among the disability community and show the world that “disabled is not a dirty word”.
She said she is no longer “worried about showing (her) true self” and wants to encourage others to do the same.
“Most people usually point out the negatives, but there are so many great positives with going and finding other people that look like you, other people you can connect with, and just creating this amazing community where you can uplift each other,” she said.
“That’s one of the things I love about social media so much because when I came out about my limb differences, other people reached out and said, ‘Hey, I look exactly like you, this is so exciting, I’ve never seen anyone else that has the same hands as me’.
“So it’s one of my favourite things now – and, yes, it’s sad that we didn’t have that growing up, but at least it’s there now and we can have that moving forward.”
Ectrodactyly is a rare genetic disorder, and symptoms can vary, the National Organisation for Rare Disorders says.
Rochelle underwent surgery to minimise the gap between her fingers and remove the longer toe on her right foot, enabling her to have improved grip and wear shoes from a young age.
However, finding the right shoes has been an ongoing challenge and, when she was younger, she could not understand why she could not wear the same shoes as “able-bodied” people.
“I remember specifically, there was a time, I think I was about five, that I tried to get my mum to buy me a pair of flip flops – they were pink, and they had butterflies and flowers on them,” she said.
“My mum was so heartbroken because she couldn’t fully explain to me, ‘No, you can’t wear these shoes, they are going to be too dangerous for you’.
“She eventually just caved and got me the shoes, and we were going up the escalator to go to the next floor in the mall, and I tripped, and we fell.
“Ever since then, I’ve thought, I’m going to wear shoes that will stay securely on my feet.”
Throughout her life, Rochelle has used humour to “defuse” awkward or uncomfortable situations and to enhance her confidence, but when it came to dating, for the first time in her life she felt self-conscious and “unworthy of having a real relationship”.
She remembers one boyfriend who “was like a deer in the headlights” when he saw her feet for the first time, and another who ended the relationship over the possibility of their child being born with ectrodactyly.
“He talked to his family, and his mum at the time said, ‘You need to decide whether you want to have kids because if you do, you have to break up with her’,” Rochelle explained.
“The relationship ended, and I thought, I can’t blame him, but when I spoke to my friends, they said, ‘You’re amazing. What’s wrong with having a child with a limb difference?’
“That’s when I realised that I had internal ableism, where I told myself that having a disability is awful – ‘you’re not capable, you’re not worthy of having an amazing relationship’.”
Ableism is discrimination in favour of able-bodied people – and it was at this point that Rochelle decided she wanted to do something about the lack of representation for people with ectrodactyly on social media.
This “lit the fire” in her to share her story publicly for the first time, aged 25, and she has never looked back.
Since then, she has launched her own Instagram, TikTok and YouTube channels on which she discusses ectrodactyly, limb differences and other disabilities, along with her hobby of gaming, and she has met Charles.
Reading positive comments and messages, including from mothers of children who describe her as “an amazing role model”, has been “heart-warming” and makes her emotional – and she wants to continue to “fight ableism and bring more representation for the limb difference community”.
“The biggest thing for me is representation for the limb difference community, but also for other disabilities as well, because the more we have that out there, the more of a norm it will be,” she said.
“I want to be that role model, that person I wanted to look for in social media growing up, that person that younger me would be proud of and say, ‘Oh yeah, I know her, she’s so awesome, I’m just like her’.
“It’s a younger me that inspires me to keep going forward and talking about these things, and I want to give the message that disabled is not a bad word, it’s not a dirty word, and you are fully worthy and capable of anything you put your mind to.”
Find out more about Rochelle and her social media channels at beacons.ai/goodmornindreamer
