It wasn’t until I met proud disabled people that I discovered I could be proud of myself, too.
For most of my life, I had only known disability and disability identity through the media, or the lens of those teaching me.
These people were able-bodied, neurotypical teachers, teacher aides and physiotherapists who mostly knew disability from working with children with disability, not from experiencing it themselves. Their messaging echoed that of mainstream media; disability is a bad thing, something to be pitied and ashamed of. Everything must be done to ‘overcome’ it.
Mamamia sits down with for a cup of tea with Stella Young. Despite her death in 2014, her legacy lives on. Post continues after video.
To this day, the stories that circulate far and wide are largely built on devastation or grief. “I had to grieve the child I lost when he was diagnosed with autism” or “everyday I live with the shame of being different”. These stories are popular because they elicit sympathy.
The problem is that these messages don’t actually reflect the vast majority of disabled people. These messages are built on internalised ableism, and are devastatingly harmful.
Internalised ableism is in the little things, like being ashamed to be seen with a cane because it’s ‘embarrassing’, or telling your wheelchair-using son that he’s ‘okay because at least there’s nothing wrong with your brain!’. It’s when you doubt your disabled employee can complete a task so you delegate to someone else before they even get a chance to try. It’s when disabled actors aren’t cast in disabled roles because ‘it’ll cost too much’. It’s when ableism pokes through your words and your actions without even realising it, reinforcing your core belief that disability is bad and something to be mourned – even if you’re adamant that you don’t feel that way.
Last week, as I was scrolling through Twitter, I saw a tweet from Mamamia linking an article they had shared, an excerpt of Lee Kofman’s book, Imperfect: How our bodies shape the people we become. As soon as I started reading the excerpt, I felt a deep sense of sadness and hurt. The language used didn’t sit well with me and felt deeply offensive not just to me, but to so many disabled people I know who embody pride, strength, and respect. I felt that the excerpt was leaning into pity and resentment, fostering the negative perception of disability that I had to fight to unlearn.
These are the stories we hear most. These are the stories that get the most attention online and in print. I expressed my concern about these tropes on Twitter, and I’m grateful to Mamamia for asking me to write this piece as a result.
Though I don’t live with visible scars like Kofman, I am still visibly disabled. I walk with an uneven gait that draws attention. Living with a rare muscle disease has been challenging, but as I came to terms with my body and how it functions, I found myself struggling more with the constant need for advocacy and reinforcing my right to take up space and be heard.
I once shuddered at the word ‘disabled’ because it made me feel ‘less than’ those who don’t live with disability. I now know that the feeling of shame came directly from the internalised ableism I lived with. I couldn’t shake that feeling until I met proud disabled people who took me in and taught me about the social model of disability, and ‘inspiration porn’.
Reading up on Stella Young’s work and legacy was life-changing and helped me come to be comfortable in the body I inhabit. The honour of receiving the inaugural Stella Young Award from Arts Access Victoria in 2018 is still mind-blowing, but I know there’s no way it would have happened if I hadn’t come to challenge this ‘disability as tragedy’ trope that was thrust upon me from an early age.
I’m not going to argue that life is blissfully easy, but I’m not going to argue that I deserve a round of applause just for existing. Thanks to the social model of disability, I now know with certainty that I am not disabled because my body is. I am disabled because of the barriers society has created, both physical and attitudinal. Those attitudinal barriers exist because of the stereotypes and tropes we have continued to uphold, all thanks to internalised ableism.
I will always have immense respect for those who share their truth as honestly and earnestly as they can. This piece is not an attack on Kofman's personal experience. She has every right to write her truth.
But it’s important that we acknowledge that disability cannot be homogenised. It is not a ‘one size fits all’ definition or experience. It’s important to understand that disabled people are the experts of their own experience, but their experiences won’t be universal. Sometimes we get it wrong and misrepresent others.
Dylan Alcott is a fantastic role model, but he does not represent every single wheelchair user. Lee Kofman does not represent every single person with scars and facial difference. “Mia” (in Kofman’s book) does not represent every single person with dwarfism, just as I do not represent every single person with a muscle disease.
We have a responsibility to share the whole truth, not just the same old tropes. Why? Because if we don’t, we allow internalised ableism to take hold.
It’s time we start listening to (and holding space for) other voices. Vilissa Thompson, Carly Findlay, Alice Wong, Jessica Kellgren-Fozard, Dr George Taleporos, Annie Elainey (Annie Segarra), Shane Burcaw - these are some phenomenal voices and are just the beginning. Better yet, follow @WeAreDisabled on Twitter for a new host every week! If you diversify your social media feeds and the disability representation you consume, you’ll challenge your internalised ableism and see a more accurate representation of disability, too.
Remember, disability isn’t the tragedy. Ableism is.
Are you ready to listen?
Madeleine Little is a performer, theatremaker, researcher and advocate based in Brisbane. You can find her on Twitter @notmadeleine or on Instagram @madeleinelittle. Read more about Madeleine at madeleinelittle.com
Top Comments
I coordinate a clinic that offers maternity care for women with disabilities. I was involved in the initial research project as to how maternity services could better suit this cohort of women and the inception of the clinic within in our maternity services and have now been supporting pregnant women and parents living with disabilities for 16 years. We recognise disability as an individual situation like you have highlighted in this article. We support women to independently care for their babies using a strength based approach and by empowering women in the care. We enhance strengths and problem solve barriers. Barriers such as societies view around parenting with a disability and bridging gaps to assist women parenting with disabilities by assisting referrals to agencies that can assist with adaptive equipment such a cots and prams etc that best suit their needs . Quite often it’s simple things like appropriate height cots or cot side openings for wheelchair access. Things that abled parents and the wider community take for granted. It’s not that people with disabilities can’t parent often they just need barriers addressed.
I have multiple orthopaedic and neurological congenital problems. I managed pretty well as a young person, even managing to become a nurse. Once I could no longer nurse, I went to TAFE, did an office administration course and two months after finishing, got a job as a specialist medical secretary, a job I did for doctors in five different specialties, retiring at 66.
My parents refused to let me take advantage of my problems and insisted I live as normal a life as possible. I often thought they were cruel at the time but now, I thank them from the bottom of my heart. During my time in medicine, I saw so many people with minimal disabilities whose only objective was to get a disability support pension and government housing. They had no interest in finding a career they could manage and thereby live a full and rewarding life. Back pain does not mean that you can’t work. I know. It didn’t stop me. I knew a totally blind man who was a switchboard operator back in the day at Newcastle uni.
Now I’m in my 70s though, I’ve fallen in a heap. I’m barely managing with a stick. My husband’s terrified every time we go out because I’m so wobbly and wants me to use the walker he bought. The doctors I see are telling me I should be in a wheelchair, for my safety.
Unless it’s happened to you, nobody has a clue how horrible it is to finally have to signal to the outside world that you’re not able bodied. I hate it but there’s no point in carrying on about it. I choose not to get depressed or negative. I focus on what I can do and do it.
The biggest upside to being disabled is the people who approach asking if you need help. I’ve discovered that the world’s full of brilliant people and I love meeting them. I wouldn’t change anything about my life or my body. Well, perhaps I’d stop my hair from falling out. Lol. I’ve done everything I wanted to and being like this has made me much more understanding and tolerant.
Use your walker, both for tour safety and your husband's peace of mind. Kudos to you for not choosing the path of victim and you certainly must have had some grit to have completed nursing when you were not in perfect health.
But Susie if I hadn’t done what I did, my life wouldn’t have been so rich (not in money) and fulfilling. The memories are amazing. Every day I’m reminded of something wonderful or funny and my husband and friends love hearing my stories. Imagine if I hadn’t gone down this path. I’d be sitting here now feeling sorry for myself and wondering why everyone else has such a wonderful life and I’m so unlucky. I’d be thinking I’ve never done anything or been anywhere and it’s not fair.
I knew I only had one big trip in me, so in 2009, we did a 22 day tour of the UK and Ireland. Getting in and out of the coach was an exercise in hilarity but carried out with so much humour and good will by the tour guide and passengers, that I never felt like a nuisance. I have wonderful memories of that as well, such as the poor old drunken woman in a pub in Ireland, who insisted on hauling herself out of her seat and lurching across the floor to help me out of my seat, all the while telling me what a ‘poor darlin’ I was. Memories like that really are priceless. If I’d gone down the victim route, I’d have missed all that.
And I’ll take your advice and start using the walker. Eventually. 😀😀