Any disabled person will tell you about the myriad of barriers that there are to accessing disability support, especially when you aren’t obviously, visibly disabled. But what happens when the biggest barrier you face is your own, internalised ableism?
I was diagnosed with myalgic encephalopathy (ME), systemic lupus erythematosus (SLE), and fibromyalgia at 17 years old, and have identified as disabled for over 10 years now. Recently, Autism and ADHD joined my list of comorbid conditions, and I realised that I’ve been disabled for my whole life. Throughout most of 2022, with my SLE and fibromyalgia flaring, and facing a severe case of Autistic burnout, I was spending between $400 and $1000 AUD per month on my health, in a country with a “public health system”.
Considering that my worsening physical and mental condition meant that I was only able to work part-time, this expense was financially crippling. I decided, with a gentle nudge from my psychologist, to apply for funding through Australia’s National Disability Insurance Scheme (NDIS) to cover the therapies I needed to support my function as a disabled, neurodivergent woman in an ableist, neurotypical world.
For those of you unfamiliar with the NDIS, it is a scheme rolled out by the Australian Government in 2013 to assist disabled people to access funding for supports that are not covered by our public health system, such as assisted living technology, occupational therapy, support workers, and capacity building psychology for Autistic people.
Accessing the NDIS is usually a notoriously lengthy and difficult process, and there’s strict inclusion criteria and rules around what you can spend your funding on.
Despite having identified as disabled for over 10 years, when my psychologist and I first started talking about accessing NDIS funding to pay for my therapies, I was surprised to realise that I didn’t feel “disabled enough” to access the support I needed.
The application form that she sent me sat unopened in my email inbox for weeks while I grappled internally with this voice that told me “you’re not disabled enough to access this funding” and “you don’t deserve this support”. Somehow, I couldn’t comprehend my own disability. I couldn’t fathom how a 29-year-old woman who has two university degrees and a professional job could be eligible for support funding.
Even though I know that I struggle with things that nondisabled people do not. Even though I can’t remember ever having a pain-free day in my life, and even though I know that most people don’t have to spend up to $1000 a month to be able to work 3 days a week, and then lie in bed exhausted and unable to function for the next 4.
I’ve spent the last 12 years of my life advocating for invisible illnesses to be recognised as disabilities by the media, the government and the general public, and yet I sat paralysed, unable to recognise it in myself, in order to complete my application.
The pervasive societal ableism that I’ve fought so hard against for my entire adult life reared it’s ugly head in my subconscious, and it took weeks, lots of therapy, and financial desperation for me to fight it enough to complete my application, and submit it.
Then came my planning meeting. An hour and a half sitting in a room with an NDIS employee, talking about my goals and support needs. Leading into this appointment, I had so much anxiety. What if she doesn’t think I’m disabled enough? What if she doesn’t believe me when I say I struggle to do my washing and clean my toilet, but I want to go back to university to study medicine? How do I make her realise how much I struggle, when my whole life, I’ve been trained to trick people into thinking I’m capable, and coping?
I’ve used my intelligence as a mask for most of my life, and the vulnerability required to drop the mask in this setting, and admit that I’m not okay and I need help to function was so difficult to muster.
I had to seek coaching from my psychologist, and friends who have accessed NDIS support prior to my appointment. They told me to “talk about my worst days”, and coached me on the language to use to convey my struggles accurately. They reminded me not to minimise my struggles, the way I’m so used to doing.
In the end, the planning meeting went well, and I was granted some funding. It’s not enough to cover all my therapies, so I’m going to need to appeal once I’ve had functional assessments done.
I can’t help but to wonder, would I have been granted more funding if I wasn’t fighting my internalised ableism throughout the whole process?
But at least now, I’ve done the self-work I needed to in order to feel worthy of support. The support I’m able to access are going to better my life, and going forward, as I appeal for more funding, the barriers I will face will be external and system-based barriers. I no longer feel unworthy of support.
I am “disabled enough”. It just sucks knowing that I needed the external validation of an organisation to feel that way, due to how ableism has infiltrated my brain.