How do you define disability? What does it mean to you, and why?
For a long time I mostly saw disability through the eyes of an able-bodied person with little experience of that world, until I realised it was broader than I imagined and I belonged in it. I had thought that disability would be obvious; there would be visual cues such as mobility aids, Auslan being used, white canes and service dogs - I thought that disability was mostly something you could see, which meant that chronic illness was illness, not disability. That was then.
In Australia, 1 in 5 people live with disability; this meant over 4 million people. The Australian Network on Disability defines disability as "any condition that restricts a person's mental, sensory or mobility functions. It may be caused by accident, trauma, genetics or disease. It may be temporary or permanent, total or partial, lifelong or acquired, visible or invisible… No two people with the same disability experience their disability in the same way”.
Disability can mean a huge range of things and it is different for each person living with it. According to the Australian Network on Disability, out of the 4 million people living with disability in Australia “around 3.4 million have a physical disability – such as respiratory disorders, neurological disorders, musculoskeletal disorders, immunological disorders, diabetes, kidney disease or cancer”. How many of them do you think are visible to the naked, untrained eye? It just goes to show that everyone should think twice before judging another person and that society must expand its view of disability and accessibility.
There is more to disability than what is immediately visible. 'Passing privilege' is a term occasionally used in relation to invisible disability because we are able to pass as able-bodied members of society; it implies that in this way we avoid the prejudice and lack of consideration that the visibly disabled frequently endure. It implies that because of this, our lives have not been as difficult, our struggles not as hard and our losses not as real - even though by definition we are also disabled. It's a pretty offensive term really. We frequently hear of people with invisible disabilities losing friends and family because they are unable to understand something they cannot see, being treated differently because of their appearance (or lack thereof), their opinions and experiences discounted because they are not perceived to be affected, not really disabled so not entitled to the same rights or lucky to fit in with the able world. We are sort of in limbo – often unable to fit in completely with either world, often forgotten and overlooked. Invisibility is not always a super power.
People with disability, whether that disability is visible or invisible, want to be treated like human beings - because that is what we are. We want to be treated with consideration and acceptance of our differences, our similarities and what we need to be able to live our lives as independently as possible - not condescension and pity. We want to be asked and we want to be heard, not have our needs or abilities assumed. We are not here to be a source of inspiration to the able-bodied (inspire is such an overused and misused word these days). And we don't want able-bodied people, people without a parking permit, to park in our parking spaces (even if it is only for 5 minutes). No permit, no park.
For me, sickness was a part of life, pain was a part of life, prolonged fatigue from those things was a part of life and I saw it as something that I would eventually get better from, because I was never told otherwise. I knew there was something wrong with me because all the doctors, tests, surgery and medications were trying to make me better, trying to find out what was wrong and fix it - but nobody ever mentioned the 'D' word, or suggested that my conditions could be permanent and fluctuate in severity. Maybe it was because they couldn't figure out what the root cause of what was making me sick, that the right tests weren't available at the time. Maybe they thought I would grow out of it. Maybe they were more occupied with finding out what was going on and fixing it instead of giving me the tools I needed to manage it in the long term - or maybe it was because their definition of disability was also limited.
The real-life consequences of my disability are that I can not work, that if I am able to work in the future my options will be more limited than they once were, that I frequently have to cancel plans at the last minute, that I can not walk far or stand for long, that I am unlikely to be able to have children of my own and if I do it is possible I will pass on my genetic conditions to them. They mean that I take 30 tablets per day to help my body work at its best and see multiple specialists, that I have had multiple surgical procedures and they have contributed to depression and anxiety off and on over the years.
They also mean my rights to services, consideration and the legitimacy of my identification as a person with disability are constantly questioned and a source of anxiety. I am disabled but I don't ‘look’ it. My opinion is often questioned or completely discounted. Choices and assumptions that affect me are made without my input and I am expected to be able and happy to go along with them. When I can’t, it’s my fault - my illness, my inability to do some things and my need for particular plans etc is an inconvenience: I’m getting in the way, I’m not trying hard enough.
I didn’t choose this life. I didn’t choose to spend so much time having to rest. I didn’t choose to be ‘complicated’ or ‘rare’. I didn’t choose to stop working and become dependant on the government for my income and my parents to help care for me. I didn't choose to change my life plans so many times I have given up on making them.
Don’t get me wrong, there is a lot about my life that I love and I am fortunate to have some wonderful people in it. There are many things I can do that I enjoy, things that bring me great pleasure such as writing, but I envy the freedom of choice that able people have. I don't have that and I haven’t had it for as long as I can remember, even if I look like I could.
I didn’t choose this life but it is the life I have so please do not discount it.
So, how do you define disability now?
About Claire Barnier
Claire was a guest speaker at the Write-ability Salon (Nothing About Us, Without Us) at The Wheeler Centre in December 2015. You can find a recording of her performance on her blog.
This commission is supported by the City of Melbourne 2015 Arts Grants Program. Write-ability is a partnership between Writers Victoria and Arts Access Victoria.