CW: Some ableist and self-stigmatising ideas explored, trauma and suicidality briefly mentioned.
I’ve been thinking about disabled identity a lot lately. For two big reasons.
At the start of the year I started my new role as an NDIS Educator. For those who are unfamiliar, the NDIS is a way of providing individual funding to people with disabilities so that they can get the support they need to live an ‘ordinary life’. My job is to essentially teach people with mental illness and their carers about the NDIS and the application process.
Throughout the first two months of the year, I have gone through a big learning curve about the NDIS and who does and doesn’t qualify. And I’ve realised something. According to the NDIS Act and eligibility requirements, I could actually qualify. Which is strange to me, because for the longest time I have never used the word ‘disabled’ to describe myself. And often when I have dabbled in it, I have been criticised by others and quickly retreated. More on that later.
The other reason I have been thinking about disabled identity is Carly Findlay’s amazing book ‘Say Hello’. Carly lives with a rare skin condition called Ichthyosis and through out her book explains the many challenges she faces, many of them coming from both covert and overt ableism. She also talks about her main triumphs and self-love. I’m a big fan of Carly’s and actually had the pleasure of meeting her at a conference last year. I highly recommend you support her work. You can find Carly’s website here and her Instagram here.
If you are interested in buying a copy of Carly’s book ‘Say Hello’ (which I highly recommend) you should follow these affiliate links so Carly gets some kickback. Physical copies can be purchased at Booktopia and ebooks can be purchased at Apple Books.
Plug for Carly over! (haha). I promise she doesn’t even know I’m writing this. I just genuinely believe everyone, with or without a disability, should read her book.
Okay! NOW I’m done.
In ‘Say Hello’, there is a chapter I particularly related to called ‘Becoming Disabled’. In this chapter, Carly talks about not identifying with the word ‘disabled’ for a long time because she saw others who were called disabled who didn’t look or act like her. This was big for me growing up. My Mum was a disability advocate so I was always taught to treat people with disability with respect. I befriended the kids that others bullied for their differences. And it never once occurred to me that I had more in common with them than the bullies.
It has taken me a long time to come to terms with the idea that I might be disabled. For one, I was stuck focusing on how others defined disability instead of reflecting on my own experiences with mental illness and how debilitating they were. I got it into my head that I wasn’t unwell enough. But at the same time, I wasn’t well enough? I felt like I was suspended between the world of disabled and non-disabled and didn’t fit in anywhere.
A lot of this confusion came from conversations with my Psychiatrist. When I talked to him in the past about applying for the Disability Support Pension or the NDIS, he told me these supports were for people who really disabled. A little context is warranted here. At the time I was unemployed and unemployable, barely keeping my head above water and desperately suicidal. My Psychiatrist is also blind. So it’s not just non-disabled people that have rigid ideas about disability, it permeates the entire community.
As a result of that interaction with the Psychiatrist and others, I often feel self-conscious about using ‘disabled’ to describe myself. I feel like the term is policed by people. Carly talks in ‘Say Hello’ about asking people for seats on trains and how they often want a certificate proving disability. This really hit home for me. I have often debated asking for seats on trains but I always chicken out. I don’t really want to explain to a stranger that I need a seat because brushing up against strangers on crowded trains causes me to have intense flashbacks and makes me instantly suicidal. When you identify with the word ‘disabled’ you are often left having to explain yourself, which sometimes I am just not ready to do.
I think a lot of my struggles with disabled identity came from stigma. I hate to say this but I think a part of me thought that by identifying as disabled I was failing. I was giving up. I’m honestly ashamed typing that but it is the truth of how I felt deep down in my gut. One of my first blogs on here was about Stigma and Self-stigma and how they relate. So you can see I’ve been grappling with these concepts for a while.
Sometimes, I really do view myself through the stigma lens. I think I am crazy. Broken. Unreliable. Useless. But I am learning. And the word ‘disability’ isn’t so scary to me anymore. Though it poses challenges, I think it provides a context and framework to put my experiences in. It can help people to better understand me. And more importantly, it can help me to better understand me.