Meet Tracey Jackson, 53. Tracey loves photography, travel, fashion and shooting (yes, the kind with rifles!) and says that when she's shooting, it's like she's transported to another world, where all she has to focus on is getting the pellet to the middle of the target.

At the age of 16, Tracey was diagnosed with FSHD (Facioscapulohumeral Muscular Dystrophy), a rare degenerative muscular condition that eats away at her muscles. And while this condition has been a part of her life since she was a teenager, the last seven years have seen her deteriorate quite noticeably.

FSHD affects all of the muscles in the body meaning Tracey is no longer able to stand as the muscles in her legs are too weak. Her scapula has lost all the muscles around it which makes lifting her arms extremely difficult. It also impacts her facial muscles, mouth and even her eyes which in turn affects her vision. All of this means that daily tasks (dressing, brushing her hair, showering, toileting) are no longer possible to do unassisted.


Tracey grew up watching her mum struggle with the same condition, so when she was told that she had the same disease, her world was turned upside down. She battled with hatred of herself, the way she looked, the way she felt. Seeing her mum suffer and eventually die a horrible death meant Tracey felt as if she was watching own destiny unfold in front of her eyes. “I witness all of this, so some days it’s really tough knowing where my illness is taking me”, says Tracey.

From the age of 20 Tracey needed to use a manual wheelchair to leave the house and hated it. It was only in her 30s that she came to truly accept her illness. This was in part due to her focus being shifted away from her own condition and onto her mum who was put into permanent care after Tracey's dad passed away.

During this time Tracey broke her leg which meant she could no longer use a manual wheelchair and needed to switch to an electric one. This meant new challenges around how to manoeuvre it, but also a change in peoples' perceptions of her. Tracey explains, "People now don’t see you; they see a person sitting in a robot." This series of events meant Tracey’s whole life was changing. She says she had no choice but to change her way of thinking from that point on.

Tracey decided to seek support from Muscular Dystrophy QLD. To help get her outside the house, she was given a sporting support coordinator who recommended some sports for her to try. "They all sounded boring!", says Tracey. After suggesting drag racing (and immediately being denied), she then said, “how about shooting?”.


Three months later, Shooting Australia had a come try day, so MD QLD took her to the shooting range. And while she discovered that she couldn't hold a pistol, a rifle was doable, so Tracey gave it a go. She had 6-8 shots and her grouping was good. Little did she know the Paralympic coach was watching her shoot and came over and asked, “When was the last time you shot a rifle?” and Tracey replied, “Never.” He then asked her if she would be interested in doing some training. Eight months later she was on the Australian Para-Shooting team and in 2015, won gold at the IPC World Cup Championship in Croatia.

This talent she never knew she had changed her life. Tracey explains that if you knew her before she took up shooting, you would have seen a quiet, self-conscious person who always sat at the back of everything and kept to herself. Now she can’t sit still and is always looking for the next challenge.

Today, Tracey's mission is to become an advocate for adult changing rooms inside toilets. These change rooms allow people with disabilities and restrictions who wear adult nappies to go out into the community and enjoy themselves because they can eat and drink without worrying that one extra sip could mean potentially wetting themselves. "Changing Places" accessible toilets are gradually spreading across Australia but Tracey wants to make these mobile to give everyone the opportunity to have fun by attending concerts and festivals.

Because Tracey struggles with using the bathroom and requires the use of adult nappies, it's put a dampener on her love of fashion. The biggest challenge she has with fashion is getting her clothes on. Tracey needs non-restrictive clothing — loose, but not so loose that she "looks like a marshmallow".

And while fashion for Tracey needs to be functional, she also wants clothing that makes her feel pretty, feminine and sophisticated, especially when she goes out. She has always loved very "girly" styles and wishes she could wear skirts and dresses, but they can get stuck in the wheels of her chair.


But she has found there isn’t a big enough range for people with her condition to choose from — that fashion is targeted at the younger generation or older generation, not the in-between. When she shops online, she looks at videos, measurements and what it looks like on the model. With pants she needs to see how high they come up, because when you move in your chair your pants move down, so they need to be high waisted without being restrictive. A shirt can’t be too long as it gets stuck in her wheelchair, plus sitting onto too much fabric can cause issues with her skin.

If we could design a garment for Tracey it would be a dress that she can wear without causing problems. It would be dressy, stylish, sophisticated and non-restrictive, with give in the top area and the ability to open at the waist area so she could easily put it on.

Incredible women like Tracey 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.

March 28, 2020 — christina-stephens-au Admin