April 03, 2020

"I've worn the same 2 dresses for the last 6 years, and I alternate them daily.........."

"I BELIEVE THERE NEEDS TO BETTER EDUCATION AND SMARTER CONVERSATIONS ON WHAT’S MISSING IN THE COMMUNITY FOR PEOPLE WITH A DISABILITY. THINGS ARE EVOLVING AND THE COMMUNITY IS TRYING — IT’S JUST THAT ACCESSIBLE IS NOT ALWAYS ACCESSIBLE. PEOPLE’S PERCEPTION OF WHAT’S ACCESSIBLE NEEDS TO BE TWEAKED."

Meet Juanita, 51, wife to Brad, mother to 1 son and 1 daughter, grandmother to 8 grandkids (all boys!) Juanita has always loved cooking, but it's no longer physically possible for her to do so because she has spinal muscular atrophy.

At the age of 18 months, it was clear that something was different about Juanita's body. Her mum took her to see lots of specialists but for years, they couldn't diagnose her, so they suggested that Juanita’s mum bring her back when she was a teenager if things hadn't improved. Juanita went back to a specialist at the age of 15 and was finally diagnosed with Spinal Muscular Atrophy, a type of MND, which is a muscle wasting disease.

Until it became quite severe, Juanita says she wouldn’t even notice her condition. It wasn’t until she would hop out of a chair and people would say she did it in a ‘funny way’ that she would think, “Yeah, maybe that is weird”. Over time things got worse, and eventually she started relying on her husband for support or would need to hold onto a wall to steady herself. Juanita tried to ignore what was happening and for a while, it worked for her. But 12 years ago, she got to a stage where she was no longer able to walk and it was impossible to deny her condition any longer. She's had to use a wheelchair full time ever since.

Today, Juanita can't weight bare or stand up and she can only move her arms to a small degree. Because of this she now requires full-time assistance to help her with everything, such as getting dressed, transferring, toileting, showering, and one of her favourite pastimes, cooking. Rather than letting it get her down, Juanita decided to start a cooking group. “If you can’t do something you love anymore, why not share it with others?" says Juanita. Once a month she teaches a group of girls in her home how to cook the basics and to put a delicious meal together.

When we asked Juanita to choose 3 words to describe herself, one of them was "patient". She says that while being in a wheelchair or being fatigued (caused by her condition) are things she can take in her stride, it’s the daily small things that affect her the most.

"THE THINGS YOU WANT TO BE ABLE TO DO YOURSELF, BUT CAN’T — THIS IS MENTALLY FRUSTRATING."

Juanita is funded to have support through the NDIS and has found it to be amazing. Until last year she only had a carer attend her home once a week, but now under NDIS funding she has a support worker 4 days a week. Juanita loves her carer.

Juanita and Brad have only ever had 1 real holiday in 12 years because she thought it was impossible to travel with her condition. But one day she received a 'Brave Award' from her church and they paid for a holiday which included the hire of every piece of equipment needed to help her. She was so thankful for the experience as it showed them what is possible. Now their challenge is finding another location for their next holiday that is sufficiently accessible for Juanita.

Fashion is another challenge that has come along with Juanita's condition. She likes what’s in fashion and wishes she could wear what everyone else is wearing, but she can’t. Functionality and comfort in clothing are really important to Juanita. With her limited reach access, she can’t have tops that make it any harder. The right length of a top is also important to Juanita – it needs to be shorter at the front and longer at the back. If it’s too short at the back, she feels like when she moves it rides up and it becomes uncomfortable. Juanita also has sensitive skin from her condition, so she can’t have things that rub against her, meaning non-restrictive, soft material is important. She also has a catheter so clothing needs to be appropriate for this, which is a real struggle.

Juanita has worn the same 2 dresses for the last 6 years. The dresses are worn and tired looking, but they provide her with what she needs. The reason the dresses work so well is because Juanita wears a strap around the top of her legs to keep her legs together which helps her to feel more like a lady. Her dresses are just the right length to tuck into her leg straps, but if a dress is too long it can blow up, get stuck in her wheelchair or rub against her and if it’s too short, she can’t tuck it in.

Trying to find anything new is difficult and she feels it's not worth the effort. For obvious reasons, Juanita doesn’t enjoy going to the shops to look for clothing so instead she will sit online for hours and hours, trying to find what she needs. This process includes watching videos to see how the garment looks, how it works, and how the model moves in it. She will check the measurements and ensure they have a good return policy because 8 times out 10 she’ll need to return it.

"IT’S HARD BECAUSE WE ARE A MINORITY AND WE HAVE SO MANY DIFFERENT NEEDS — NOT ALL OF OUR CONDITIONS ARE THE SAME. YOU CAN SEE WHY PEOPLE ARE TRYING TO BUILD A BUSINESS THAT OVERLOOKS THE MINORITY."

If Juanita could change one thing about accessibility to fashion, she wishes there were more options. She would like CS to design her a nice dress - no layers - as she doesn’t want to look like one of those ‘cake dolls’. A straight shirt dress with just the right amount of room and longer sleeves.  Something with  a little bit of gather around the chest so it's ladylike. And even though Juanita likes colour, she thinks black is handy in any wardrobe as it's practical and easy to style.

Exceptional women like Juanita are why we created Christina Stephens and the Unique Women Unique Stories series. Our vision is to provide women living with disabilities and changing bodies with a ‘choice’. A choice in fashion, a choice to be included and a choice to be heard. By shopping with us or even simply sharing our story, you're helping us get another step closer to achieving this. Thank you.



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