Today is International Day of People with Disability. I’ve been doing a lot of work in my hometown for the Day these past few days. I was interviewed by The Border Mail – the article is here. It made front page of the paper paper!
On Friday I gave the keynote speech at the Albury Wodonga combined councils event. That was one of best International Day of People with Disability events I’ve been to. So many of these events aren’t about us but are about non disabled people. But Friday’s event run by Albury City Council and Wodonga Council really centered disabled people – involving us from the planning stages to the event today. We heard from community access and advocacy leaders, the empowering women group, footballers and the incredibly talented Eliza Hull (pictured with me below) sang three songs. Elvis even performed. And so many disabled people were in the audience.
What a great day! Thanks for having me Anthea and Elizabeth, and Albury and Wodonga City Councils.
Here is the text of my speech.
My name is Carly Findlay and I’m a proud disabled woman.
I’d like to recognise the Aboriginal elders past and present future. I’d also like to acknowledge the disability activists who have and are still paving the way for equity today. This talk represents my own views and not all disabled people. I’d also like to recognise that my life is very different to other disabled people – especially disabled women. I work and live well above the poverty line, am in a safe relationship and have been tertiary educated. Many disabled people do not have these opportunities, and myself and others are fighting for human rights and equity for all disabled people.
I subscribe to the social model of disability – which means society is more disabling than my body. While I acknowledge that my skin condition is often painful like it is today, and keeps me in bed for a few more days than I’d like, it’s the attitudes toward my appearance that are far more disabling.
Some of the disabling barriers for disabled people include: lack of access into buildings and transport, low expectations of us, the struggle for disabled people to find work (45 percent of Australians with disability live on or below the poverty line), and even the media and government narrative around disabled people being burdens and bludgers.
I love this quote from Jordon Steele John, the new Greens Senator and first visibly disabled member of parliament.
“We must now recognise that disability is not created as the result of various medical impairments, but is in fact, created by society’s collective failure to adapt to and embrace and celebrate the varying levels of ability which we all have.”
I believe that Disability isn’t a bad thing. Its part of my identity like race, gender, culture, occupation and my love for food and fashion. It’s not something to grieve over, or be ashamed about or avoid saying the word.
Say the word. Disability. Disabled. Don’t use euphemisms. It doesn’t mean unable.
From Lawrence Carter Long:
“In classical Latin, the primary meaning of the prefix “dis” translates to “two ways, in twain,” according to the Oxford English Dictionary. Twain literally means “in different directions, apart, asunder.” Use of the prefix in this way has given us perfectly good words like “discern,” “discuss,” “dismiss,” “dissent” and “distill.” When used in this way being disabled does not suggest a lack of anything — including ability, except perhaps to the uninformed or willfully ignorant.”
Disability affects 20 percent of the Australian population. That’s one in five people. A founder of the disability rights movement, Ed Roberts, said
“We’re all getting older. We can’t avoid it, can we? I look around, and I notice that a lot of us are getting gray. As we get older, we realize that disability is just a part of life.Anyone can join our group at any point in life. In this way, the Disability Rights Movement doesn’t discriminate. So as those of us who are temporarily able-bodied and working for access and accommodations now get older, the changes they make will benefit them as well.”
I didn’t identify as being disabled when I grew up in Albury Wodonga. I wasn’t in denial of my skin condition – I could never hide it. But I just wanted to be like everyone else.
Unfortunately the world often isn’t set up for disabled people – and life in Albury Wodonga – or Walla Walla where I lived for most of my life – wasn’t set up for me. The heat is relentless, and so are the flies, which isn’t ideal for someone like me whose body temperature doesn’t regulate and
But the expectation to play sport at school, or to still sit outside in the heat when I was too sore, didn’t help at all. I just wanted to be in the school library where I could read and write and listen to my Walkman in the cool.
Additionally, the exclusion and bullying I faced often wasn’t believed. Unlike the new film Wonder, which is about a boy with a facial difference, the teachers never sided with me when I told them that some of the other kids called me names . This happened all throughout school – the kids just couldn’t get used to my skin – and the teachers would put the bullying back on me, asking how I could change. My throat swelled up when the principal in Wonder said:
“If Auggie can’t change his looks, we have to change how we see him”. This is how it should be.
Trying to be like everyone else didn’t help me.
It wasn’t until my mid 20s that I identified with having a disability and a chronic illness. I thought ‘disability’ and ‘chronic illness’ had really negative connotations – and why wouldn’t I when society makes ableist slurs, employment of people with disabilities is low and physical and attitudinal barriers are rife? I also never saw many positive, ordinary stories of disability in the media – disability is often portrayed as tragedy or heroic and nothing in between. There is a limited view of disability that’s portrayed in the media – limited conditions and limited expectations. And I thought that I had to be assessed by a doctor or the government to give me a label in addition to my skin condition – a label of disability or chronic illness? I didn’t realise how positive it could be to embrace these labels.
I started mentoring at a hospital program for young people with chronic illnesses when I was 26. I wanted to provide guidance and support to them, based on my experiences. But they taught me so much more than I was prepared for. I learnt about a wide range of chronic illnesses and I learnt about myself. We had so much in common despite our different conditions. I realised that like them, I missed a lot of school (and work) to attend medical appointments and stay in hospital. My condition also made it hard for me to make friends. I have more than three specialists. My condition has a really long, unpronounceable name. And it is more severe than a temporary illness like a cold or a stomach bug.
And then, a couple of years later, I immersed myself in the Melbourne disability community through writing and community TV. I saw that people with varying disabilities face the same sorts of questions, physical and attitudinal barriers and discrimination. My friends in wheelchairs receive similar, intrusive questions about their disabilities, just as I do.
Most recently, I discovered there is a vibrant and supportive community of people with facial differences. You might have seen me on you can’t ask that earlier this year. I keep in touch with four other participants from the show, and I text and call two of those weekly.
Giving myself the labels of ‘disabled’ and ‘chronically ill’ has been very empowering. I feel great sense of belonging – and that’s as big a relief as a diagnosis is. It’s given me pride. I am proud to belong to an amazing, talented, diverse, passionate community that’s committed to improving the lives of others. It’s also given me the courage to speak up and say I can’t do something because of my body’s limitations, and call out discriminatory behaviour. My knowledge of the social model of disability has grown – and I’ve embraced and practice that. I’ve become aware of sensitivities around language which has helped me communicate better. I’ve taken control of my own health, communicating my needs to doctors and educating them during appointments and through speaking at medical conferences. I also learnt that it was ok to speak out about my needs in the workplace – and have just quit my safe government job because doing speeches like these allows me to get far more rest than when I worked a 9-5 job plus freelanced on top.
And I’ve met some wonderful people who are disabled and/or chronically ill, who are affected by my skin condition, or who are allies of our community. My writing and speaking career has thrived. These aren’t labels of convenience – these are part of my identity.
Above all, I’ve learnt that it is ok to identify with having a disability and chronic illness, because these labels are not negative. These labels are permanently fixed to my identity and I am proud and feel included. Embracing these labels helped me to love myself.
So I was told that some of you might identify as a person with disability – or a disabled person even. And there might be a few allies in the room.
Here’s what I would have told younger me. I hope these things help you.
Grief is real. But grief imposed on us can be damaging. It’s really hard as a disabled person to hear others grieving over you. From you poor thing, to hearing parents of children with similar impairments tell you there’s no hope. That grief impacts is by making us feel ashamed and embarrassed.
Tell your own story on your own terms. Speak out for you and for those who are tired. Invite lesser heard voices to the table. Often only “acceptable” looking disabled people are invited to write and speak. Include and amplify all disabled voices. When you tell your story it helps others who have similar experiences to you get their courage to tell theirs, or read or listen to it and feel less alone. Ed Roberts said:
“The greatest lesson of the civil rights movement is that the moment you let others speak for you, you lose.”
Find others like you – not even with the same diagnosis but who are also disabled. Find role models – for you as adults, and if you’re a parent, find them for your children. We are more alike and need to stick together. Connect with others – the Internet makes it really easy to do this now.
Stigma and shame around disability stops many from identifying as disabled. Some people don’t want to be disabled like those other people. Rethink how you see disability, disability isn’t a bad thing.
People expect us to educate, to satisfy their curiosity. I get asked silly questions all the time – from “have you been licking lollies?” to “are you sunburnt?” You don’t have to educate everyone who asks about your disability, you can tell them you don’t want to talk about it. You don’t have to be nice all the time. I got some cards printed up – not to educate people on my disability but to tell them how rude they are. I’m yet to give them one yet, but I can’t wait for the day I do!
You don’t have to apologise for your body or your appearance or your access needs. I often used to apologise for my skin and ointment getting on surfaces, and even felt the need to explain why I look like this to people I was about to meet. I felt ashamed and embarrassed for a long time. It was at Stella Young’s public farewell that I learned that stopped this. I hugged her sister and left a giant face mark on her pink jacket. I’m sorry, I said. Her sister told me not to worry. And then I thought, Stella probably wouldn’t have apologised either. When I’m sore and we have to cancel plants, or my skin gets on my husband’s shirts or on the floor, I’d apologise. “No more sorries”, he tells me. No more apologies about my skin and ointment.
It is possible to find pride – and have resilience – even when you’ve faced discrimination and your body isn’t like other people’s. Disability pride is a great thing. For me, it means finding a sense of community with likeminded people and stopping the shame and apologies of taking up space. It doesn’t mean you have to love your disability all the time. Another thing that Stella taught me is the poem, You Get Proud By Practicing, by activist Laura Hershey.
“Remember, you weren’t the one
Who made you ashamed,
But you are the one
Who can make you proud.
Practice until you get proud, and once you are proud,
Keep practicing so you won’t forget.
You get proud
Thank you for listening today. Find me at Carly Findlay.com.au or on Facebook.
Did this post help you think about disability differently? Will you use it in the classroom or workplace? Please consider buying me a drink.