"MY HOPE IS FOR PEOPLE TO BE BETTER EDUCATED AT A YOUNGER AGE ABOUT BEING DIFFERENT. I'M RAISING MY DAUGHTER TO KNOW THAT EVERYONE IS DIFFERENT, TO BE MINDFUL OF THEIR DIFFERENCE, HELP THEM AND NEVER DISCRIMINATE AGAINST BEING DIFFERENT. JUDGEMENT IS AN ISSUE. WHEN I GO TO THE SHOPS IN MY WHEELCHAIR, PEOPLE STARE AT ME, TREAT ME DIFFERENTLY OR ACT LIKE THEY'RE GOING TO CATCH MY DISEASE.”
Meet Natalie, 34, a lover of cooking, her daughter, the colour blue, and her job as a support coordinator for the National Disability Insurance Scheme (NDIS).
While today, Natalie wakes up excited to get out of bed and go to her job each day, it wasn't long ago that she was in a very different place. At 30, she was diagnosed with Autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS), a very rare disease in Australia but quite common in Canada.
Growing up, Natalie had always experienced physical challenges and was constantly being tested so knew something must have been wrong with her body. From the age of twenty-five her health declined quite dramatically – she went from walking normally to wall and furniture gripping and feeling extremely fatigued. Eventually a doctor at the Royal Brisbane ran a range of tests and diagnosed her with ARSACS. The disease means Natalie’s muscles and nerve signals will continue to deteriorate and waste away. ARSACS combines the symptoms of MS, MND, cerebral palsy and muscular dystrophy all in one. Every day she struggles with extreme fatigue and even just walking from A to B is a struggle.
In 2018, Natalie was in a dark place. Dealing with the realities of her disease and the physical challenges that come with it led to a battle with depression. She didn't like leaving the house, she wasn’t working, and she felt like her life was going nowhere. It was for this reason she was given a support coordinator of her own through the NDIS. Her support coordinator put services into place for Natalie and she loved what they did for her.
ONE DAY SHE SAID TO HER SUPPORT COORDINATOR, "I WOULD LOVE TO DO YOUR JOB!" AND THEY TOLD HER, "YOU CAN, YOU SHOULD – YOU'RE REALLY SUITED TO THIS TYPE OF WORK!"
Natalie’s support coordinator began to teach her everything he knew and before long, she landed a job — one that never would have been on her radar if she'd never experienced the adversity that came from being diagnosed with ARSACS. She now works 32 hours a week and says she feels so lucky to give people choice and control and countless opportunities. Her mission is to listen to her client’s stories and act as their voice and advocate out in the community. She believes her illness allows her to relate better to her clients on a different level than someone with an able body because she understands firsthand what they are going through.
Despite finding so much joy and purpose in her job, Natalie still experiences challenges on a daily basis. To maintain her strength, she attends the gym 3 times a week with a physiotherapist and exercise physiologist as exercise keeps her muscles and nerves stimulated and alive which is essential for her to continue walking. If she stops exercising even for a week, there's always a major decline in her health. Natalie can walk without a wheelchair, but needs to use it after the gym, because she is so fatigued.
Being only 34, Natalie has struggled to accept the fact that she needs to use assistive equipment but she has a little trick up her sleeve. Whenever she's told she has to use scooters, walkers or a cane, she decided that the only way for her to be okay with it is if it's blue.
"BLUE MAKES NATALIE, NATALIE. IT'S MY CONQUER COLOUR," SAYS NATALIE.
Clothing and footwear is something else Natalie had to come to terms with. She needs loose and non-restrictive clothing but avoids dresses, skirts and anything that feels too long as it can be a trip hazard. Her feet need special care too as she can't walk without proper ankle support meaning boots are the only shoes that will work for her. They need replacing every 3 months due to the way she walks, and since boots are a winter thing, this means she has to stock up each winter to make sure she has enough to get through the year. When we asked her what she'd like to see from us in a garment or collection, she quickly exclaimed, "BOOTS! Make me boots all year round!"
Resolute women like Natalie 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.