Many people will never need or even think about support workers. But for those of us who rely on them, support workers are life-changing and life-saving.
I've been on the NDIS for a little over a year now. And while I have experienced struggles with the NDIS, being able to access support workers was a game-changer.
Before support workers, my life was very different. I live with multiple mental and physical disabilities, including chronic pain, chronic illness and chronic fatigue—a combination which makes existing incredibly difficult.
For those who have never experienced it, you couldn't possibly understand. I became unwell in my early 20s and even had to leave my job in favour of my writing, speaking and advocacy business. This was a decision that both empowered and devastated me: the only reason I started my business is because, in my experience, the traditional workplace doesn't generally consider or accommodate disabled experiences.
But it wasn't just my work that was impacted. With my body in such agony, barely able to move or feed myself, things became dire. I struggled to work and manage my medical admin, let alone things like going grocery shopping, cooking, washing clothes and bedding, and cleaning. These became things I couldn't do—because I had such little energy, and every tiny ounce of it had to go towards my work to afford to pay my bills (including over $1000 a month for medical costs).
It wasn't like I took it easy; I struggled immensely. Some days, I was in too much pain to move. Other days, I was too tired to work out how to plug my phone into its charger. I was going to let it die because I didn't have the energy.
This led to some pretty awful living conditions—although people probably wouldn't realise how much I struggled. On the outside, I was in an exciting time of my career, where I was being recognised for my work and having new and exciting opportunities, like being on TV for the first time.
But at home, my life was very different. I would be able to wash my clothes maybe once every few months, with the help of my housemate. I'd mostly eat dry noodles because I had no energy to cook anything else—and it was too painful to stand and move my arms. I'd be unable to change my sheets or clean my bath. And all the tasks I had to do kept piling up and piling up, overwhelming me even more.
I felt so much shame I couldn't do these things for myself. I even feel shame, admitting it now. But that's ableism speaking because not having capacity is not shameful. We can't all do the same things.
We don't all have the same energy or pain levels, and just because someone else can do it doesn't mean we can—and we shouldn't push ourselves to keep up with non-disabled expectations because it's just an entire other world of experience.
I can't fathom what it's like to be able to work full-time, socialise, clean your house, cook, go to the shops, and still have the capacity for more. It can be an incredibly upsetting comparison—but it's also why I'm so grateful I have access to support because many people don't.
I was so anxious about letting support workers into my house and my life. I've had many bad, judgmental experiences, but I can safely say my main support worker is a gift.
I feel so lucky to have someone who can help ensure my house and clothes are clean, that I can eat nutritious food, and that she can take the burden off almost all of my household tasks.
She gets my medication for me, takes me to medical appointments, helps me with both everyday and medical admin, and supports me to try new hobbies. She helps me bake and try out yummy new vegan recipes I've always wanted to make.
She's dropped me off and picked me up from the airport so I can be a keynote speaker in another state and taken me to exciting events I wouldn't have otherwise had the capacity to go to, like being able to do a short course or film an episode for TV.
Thanks to her, I've even been able to set up a veggie patch, something I've always wanted to do but never thought I'd have the capacity for, especially with pain.
She also helps me take care of the manual labour involved in owning a pet, which I will always cherish because adopting my gorgeous cat, Kimiko, has been the highlight of my year. She's a fantastic addition to the family and such a comfort.
It really has changed my life—and it's wild that just a few hours of support a week can do so much. It feels like such a gift.
No one should be struggling the way so many people are, especially those with invisible and dynamic disabilities and chronic illnesses. This is why it's important we share our voices and our experiences. Everyone should be able to access support because support workers can truly make such an enormous difference.
Zoe Simmons is an award-winning disabled journalist, copywriter, speaker, author and advocate. She writes to make the world a better place. You can find out more about Zoe on her website or follow her on Facebook, Instagram, X, LinkedIn or TikTok.
The views and opinions expressed in this piece of writing are solely those of the author and do not necessarily reflect the views or opinions of Mable.
