Jamie-Lee’s story – “Don’t let anyone tell you how you can live your life”

Jamie-Lee was diagnosed with Friedreich’s Ataxia at the age of 11, a degenerative nervous system condition which causes disruption of the electrical messages the body sends between the brain, spinal cord and muscles.

The condition affects a person’s coordination and movement, but Jamie-Lee, now 30-years-old and reliant on her wheelchair, refuses to let the condition stop her from living the way she wants.

Help with physical activities

“My condition progresses so I started out not needing a lot of help, then over the years my needs have grown and I think I’m high-needs now, so I need help with most of my physical activities,” Jamie-Lee explains.

She has carers who help her with personal care such as showering, toileting and dressing.

With the help she needs Jamie-Lee is able to move around her home and go to numerous therapy appointments without worry.

She also takes her support workers on spontaneous social outings and says she just “enjoys what life has to offer”.

When Jamie-Lee moved out of her parents’ house she was supported by the services she needed in a group home setting with a roommate, but she says she quickly discovered it wasn’t the home she wanted.

“I found that it didn’t suit me, I didn’t want to live my life dwelling on my disability and I struggled to connect with any of the other residents,” she says.

“However, when I moved out of the group home my parents were really worried about the level of help I needed.

“They didn’t know whether I would receive the right support, but I know it’s the best decision I’ve ever made for myself.

“I surprised myself too, I didn’t know whether I would need to stay in the group home but I love being in charge of my own home.”

Independent living

Moving into her Specialist Disability Accommodation apartment in the city of Brisbane just over a year ago gave Jamie-Lee space to be independent, without any room mates, and she calls it her “bachelorette pad”.

She has a team of support workers who help with physical activities, just as they did in the group home.

Having the choice to play by her own rule book has made her life much more comfortable, she says.

“I love being able to choose who I live with and maintain my independence.”

Her determination to live independently is strengthened by what she has been able to achieve in spite of her diagnosis and in opposition to the limiting views other people have had of her condition, not understanding that the diagnosis will not define her life.

“When I was first diagnosed the doctor who diagnosed me told my parents that I wouldn’t live past 20, so I was given a really short life expectancy and obviously they turned out to be wrong,” she explains.

She thrived at school and completed a Bachelor of Journalism with first class honours.

“I’ve always found school and uni really understanding of my condition – I actually loved it,” Jamie-Lee adds.

“The only thing I don’t love is other people’s ignorance around disability, it really frustrates me, but I do think it makes life interesting.”

Meaningful work

Education is now the focus of Jamie-Lee’s work as a lived experience associate, with the very same organisation which connected her to Specialist Disability Accommodation and the apartment that enables her to live alone.

She writes about her experience with the group home she previously lived in and the opportunities which her supported apartment is able to provide her.

The job also involves sharing knowledge of the ‘Housing Hub’ website, which can link people with disability across Australia to exactly the kind of housing they want – including independent apartments, group homes and private properties – with all the supports they need.

Jamie-Lee says the website is an important tool for people with disability to help them find the best housing for their chosen lifestyle as it makes it easy to see the options available.

“I’m thrilled to be working with the Housing Hub website, it’s the kind of website I would’ve loved when I moved out of home,” she says.

“I think this website is something that could help future generations, now having access to a different way of looking for housing.”

Sharing experiences

Aside from pursuing her love of writing through her job and advocacy work, Jamie-Lee has also been able to get support to write a fiction book about overcoming disability, which she has nearly finished.

“I have found someone who will write what I want to write which really helps me,” she says.

“I’m really into writing down my experiences and helping other people in the same situation.

“I just hope that I can be the role model in a wheelchair that I wish I’d had growing up, for future generations.

“Writing is something I struggled with when I lived in a group home because I wasn’t getting the care I wanted.

“I got the care I needed, but not the care I wanted because of all the rules I had to follow.

“I didn’t have anyone to help me type up what I wanted, which meant writing for me was a slow and frustrating process.”

Her message to the audience she writes for – which includes anyone with a disability looking for housing options – is “don’t let anyone tell you how you can live your life and what you can do”.

“Do it your own way and tell them to get lost.”