Striving for independence

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As someone who’s lived with a progressive neuromuscular genetic condition for over 18 years, I know what a struggle independence can be. For anyone who relies on help to do a lot of their daily activities, living independently is a state of mind.

It was over a decade ago that I dreamed of one day living in the location that I live in now. It wasn’t until the NDIS announced Specialty Disability Accommodation (SDA) funding, that I realised my dream apartment could be a reality.

I lived in two group homes before I found my SDA apartment building. In the first group home I lived in, there seemed to be a certain mould that all people with high-needs disability were expected to fit into.

Jamie-Lee looking at her laptop with her scribe, Jess.

I’d never even heard the term ‘high-needs disability’ before. It was a label for people with a disability who needed a lot of physical support every day. I hadn’t even realised that I now fit into this category as well.

I met a lot of other residents in the group home, who were never given a say in their carers. Apparently, to have a high needs disability meant that it was okay to be treated like a second-class citizen.

More often than not, it was overlooked that someone with high-needs disability could be mentally independent.

A lot of the time, I felt like someone who never fit into these set moulds, but there was no alternative at the time for me. I hadn’t grown up in a manner where my routine was set every day, and everything had to be planned before it happened.

I didn’t feel like I was really living in that group home. I spent my days there trying not to be any more of a burden than I already felt. Family and friends could see how unhappy I was, and went out of their way to try and help me move homes.

While the second group home I lived in wasn’t suited for my desire to be independent, it showed me that there are group homes which work well for certain disabled individuals.

One of my biggest struggles over the years has been my waning ability to write. I have spent many years wanting to be a writer, I even spent time studying journalism at university. When it got too hard to maintain my fine motor skills, I stopped typing altogether.

For a few years, I used Dragon Speech software on the computer. While I found this to be helpful for a while, it was a constant battle to use. It was becoming harder and harder to have my speech impairment translated.

Being unable to write for long periods meant I found other things to occupy myself with. It wasn’t until the lockdown period in 2020 that I didn’t have anything else to do, except write.

I spent a lot more time during lockdown writing than I had in quite some time. It was during this period that I began using my iPhone to write articles. I also wrote more of the fiction book I’d been working on.

When I moved into my SDA apartment, I found that doors opened for me that I had never even considered before. I got to exert more control over my day-to-day life, and be a little bit more creative in the support I received.

Lockdown had been easing when I moved into my apartment building. My neck had been really sore from looking at my iPhone so often to write. For my neck’s sake, I knew I needed to find a solution to stop writing on my phone.

My support co-ordinator had originally been the one to suggest that I look for a scribe, to help me write. I had been looking, but I didn’t really know what to look for. It wasn’t easy for me to find someone who had both writing and disability experience.

One night, I had needed help picking something up off the floor from an onsite support worker, Jess. We ended up chatting, and getting to know each other. That is how I found out that she’d had a lot of previous experience in copywriting. She also told me about her past work as a non-fiction scribe.

The following night, when I saw Jess I asked her if she would consider being my scribe. It turned out that it wasn’t actually that hard to find a scribe that I connected with.

Having someone to help me write my book, or even articles, has been really life changing for me. Now that I have a scribe who I feel very comfortable with, writing does not seem like such a big obstacle.

It took some time for Jess to understand my speech impairment, and the flow of my writing style. Over time, she learnt what my struggles were grammatically, and felt comfortable with sharing her criticism.

Not long ago, I worked with Jess to write a resume, for a job that I really wanted to get. Something I’d never even thought to try before I began working with her. I ended up getting the job I’d been hoping to get, with her help.

I’ve seen how much of a difference to your life a little bit of support can make. The NDIS has been a game changer for Australians with a disability. It has ushered in a new era for this country, one where we aren’t defined by the adversity faced in life.

Growing up with a disability hasn’t been easy, but it has shown me that there is always a first time for everything. What works for me, might work for someone else. Sharing innovative ideas with each other might just lead to great things.

If you think you might be eligible for SDA, talk to our Housing Hub team to find out more. Email or call us on 1300 61 64 63 between 10am and 3pm (AEST), Monday to Friday.

About the Author

Jamie-Lee loves to challenge stereotypes surrounding disability; her lived experience of someone growing up disabled motivates her advocacy. Having studied journalism at uni, she uses her writing skills to her advantage. Shining a light on independent living options available to people with a disability is how we can create change in our society. She hopes to help other people with a disability along their journey, encouraging vulnerable people to find their voice. She believes that diversity will pave the way to equality for all.

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