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We’re delighted to welcome Laura Pettenuzzo as a guest blogger. Laura is a writer with cerebral palsy and a disability advocate living on Wurundjeri country. Passionate about accessibility, Laura writes Plain and Easy English content for various organisations, and her words have appeared in places like ABC, SBS and The Age.
I’ve had cerebraI palsy for almost 30 years; since I was 6 weeks old. But I’m ambulant, and for most of that time, I didn’t consider myself disabled, and certainly not “disabled enough” to deserve support.
That was internalised ableism talking: negative ideas about disability and disabled people that I had accepted without question. By applying for the NDIS, I was refusing to accept those negative beliefs.
My first two NDIS applications were rejected. I was tempted to give up, tempted to believe what internalised ableism was telling me: the rejection was a confirmation that I wasn’t disabled enough after all. But I spoke with my family and friends (many of whom are also disabled) and they encouraged me to apply again. I did, and the third time was the charm.
I was given a two-year self-managed plan, from December 2021 to December 2023.
I cried when I received the phone call that my application was approved, and I celebrated the news with numerous video calls. Getting onto the scheme, though, is far from the end of this story.
I’m one year into my plan, and I’ve spent far less than 50% of it. This is not because I didn’t need support, but because
a) there was a part of me that felt guilty for spending it, as though I didn’t deserve what I’d been given.
b) I didn’t understand what I could spend it on, and
c) I am doing everything I can to avoid COVID, which means limiting face to face supports as much as possible, especially now that all precautions have been removed.
While I can’t change the fact that we live in a world where I feel unsafe around people who don’t wear masks, I’ve been working with my psychologist to recognise the internalised ableism in my reluctance to use my funding. I’ve also been speaking to my friends who are NDIS participants and/or allied health professionals about the services I hadn’t been claiming.
For example, I often take wheelchair accessible taxis, or maxi taxis, to get to work or visit my friends and family. I hadn’t realised, until a friend pointed it out, that my NDIS funding would cover the cost of those taxi trips.
My Local Area Coordinator (LAC) is lovely and will promptly answer emails or phone calls. It’s just that the information provided by the NDIS can be confusing and overwhelming, even for someone with the privilege of university education. It’s far easier to reach out for peer support.
Now that I know how I can use my funding and am starting to believe I am allowed to, the NDIS has changed my life.
I can access weekly hydrotherapy sessions which decrease my pain and increase my function. I’ve found a pool that’s both relatively close to my house and warm enough that being in the water doesn’t increase my spasms. My physio wears a mask and schedules our appointments when the pool isn’t likely to be crowded.
I have support workers who visit my house once or twice a week to assist me with cooking and cleaning. The energy I save as a result means that I can work and socialise more and I feel much happier.
With the choice and control granted by the NDIS, I am able to thrive not in spite of my disability but alongside it.
