An opinion piece by Carly Findlay, OAM
The admin involved with being disabled is so tedious.
Firstly, there’s the medical admin. Making and going to medical appointments, getting scripts filled, getting doctors’ letters, and having hospital stays and treatments.
Then there are the meetings with government and other organisations to help change policies and practices (we often do this for free), requesting accessibility (and facing defensiveness), and the constant need to prove our disability and diagnosis in order to navigate work, travel, support and the wider community.
We constantly have to prove we’re disabled - even though it’s so well documented. I’ve lost count of the number of doctors’ letters I’ve had written that state that I have Ichthyosis, my medications, symptoms and access needs.
When we were able to travel, I spent a lot of time completing medical forms and talking to airline staff to state my access needs. Sometimes they weren’t even recorded on my booking record or granted when I flew!
When disabled people are discriminated against, and there’s an option to lodge a complaint, the complaint process is often arduous. I’m sure this is to put people off making complaints. The complaints processes are complex, often putting the onus back on the disabled person to ensure we have proof. But sometimes it’s not safe to film a discriminatory situation, or get all the information in a time of distress. When we are discriminated against, and lodge a complaint, we relive our trauma, often multiple times, for an outcome that often doesn’t benefit us. There are often no fines, legal repercussions or further training for discriminatory offenders.
Covid has also added an extra layer of administration. After getting many different letters from my doctor to confirm I am exempt from wearing a mask for extended periods, as well as to state that I have a cleaner for medical reasons, I was feeling pretty tired. I also had to update this with each new lockdown. Surely one standard letter should suffice?
When I was finally able to book in for my Covid Pfizer vaccine (after two cancellations due to previously being booked in for Astra Zeneca - it was recommended that Pfizer was the best for me), I was told I’d need another letter from my doctor!
“Can’t they just Google me?” I joked to a friend! I’m a public figure, a writer, and my diagnosis and access needs have been discussed a lot by me in the media and in events I’ve done. Not. Another. Letter. But there was more!
Booking my Pfizer vaccination also showed me that often we disabled people need to provide paperwork that non-disabled don’t. The burden of proof is very one sided.
My husband’s non-disabled privilege showed (and irked me) recently when he went to get a Covid vaccination, as my carer, and didn’t have to provide any paperwork. Meanwhile, as a disabled woman, I had to source a medical certificate, call a designated hotline, travel over an hour from home to get jabbed (at the time, there were only five Pfizer hubs), and wait on hold for hours to book my second jab. Adam walked in to a local vaccination hub for both his doses!
Elisha Matthews, a disabled woman, advocate and writer based in Brisbane agrees with me. In a piece called The Unspoken Disclaimer of Disability, Elisha writes about this medical admin - the costs, the time and the emotional and physical toll it takes.
“No one tells you this when you acquire your disability but you need to know, the unspoken disclaimer of disability, is that you will spend the rest of your life filling out forms,” she writes.
“Along with the financial cost is the physical, psychological and emotional cost of constantly begging for support. For the services governments like to use as scores on their election campaigns and pat themselves on the back for providing them only to make us jump through hoops and then set them on fire and make you do it again. If you finally do it successfully, well, you did it so you’re not really that disabled are you?”
Elisha believes that it is demeaning and exhausting to constantly “need to justify your existence.”
“What you don’t adjust to is constantly having to justify your existence. You don’t adjust to having to prove and reprove, over and over, that your disability is still there, just to get a little bit of support. For the miniscule segregated bits of support you can access you must be prepared for the mammoth task ahead of you of applying for that support.”
Elisha has recently applied for the Taxi Subsidy Scheme and has faced a lot of barriers, despite providing the correct information. During the application process, she has felt gaslit by the Department of Transport, who have implied she’s faking her disability.
I acknowledge that I’m privileged - I don’t receive the Disability Support Pension and am not on the NDIS - disabled people who receive funds from these two schemes experience far more medical admin fatigue than me.
But I am tired. I strongly believe that bureaucrats and other people making decisions about disabled people’s lives need to listen to us more, believe us, and remove the red tape that so often prevents us from achieving equity with non-disabled people.
Carly Findlay is a writer, speaker, appearance activist and arts worker in Melbourne. She’s on Twitter and Instagram @carlyfindlay and writes at CarlyFindlay.com.au.
Carly Findlay
Carly Findlay is a writer, speaker, appearance activist and arts worker in Melbourne. She’s on Twitter and Instagram @carlyfindlay and writes at CarlyFindlay.com.au.