Claire and Cherry Pie

Disability – What’s in a name?

How do you define Disability, what does it mean to you and why?
I mostly saw disability through the eyes of an able person with little experience of that world until I realised it was broader than I imagined and I belonged in it.  I thought disability would be obvious; there would be visual cues such as mobility aids, Auslan interpreters, white-tipped canes and service dogs – I thought that disability was something you could see, which meant that chronic illness was illness, not disability.  I grew up with the impression, as so many do, that disability is visible and easy to define.  That was then.

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. A disability may be temporary or permanent, total or partial, lifelong or acquired, visible or invisible… To be deemed a disability the impairment or condition must impact daily activities, communication and/or mobility and has lasted or is likely to last 6 months or more….  No two people with the same disability experience their disability in the same way.”  It is a hugely broad definition and 1 in 5 people living in Australia have a disability, that is over 4 million people.  To find out more about disability from the AND, click here.

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 that my conditions were likely to be permanent and fluctuate in severity.   Maybe it was because they couldn’t always figure out what made 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.

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Disability can mean a huge range of things and it is different for each person living with it and those who know them so it is important for everyone to broaden their understanding of disability and accessibility and the need to treat people with disability with the dignity, consideration and respect they deserve as fellow members of the human race.  People with disability want to be treated like human beings; with consideration and acceptance, they want to be asked and not have their needs or abilities assumed.  They want to be heard and they don’t want able bodied people to park in their parking spaces but if someone has a disabled parking permit and is parked in a disabled space do not question their right to be there, use your energy better to question those without a permit; no permit no park.

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There is more to disability than what is immediately visible.  ‘Passing privilege’ is a term occasionally used in relation to invisible illness/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 our visibly disabled friends frequently endure.  It implies that our lives have not been as difficult because of this, our struggles not as hard and our losses not as real – even though by definition we are disabled.  It’s a pretty offensive term really.  We frequently hear of others with invisible disabilities 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 – not able to fit in completely with either world, often forgotten and overlooked.

Sam from So Bad Ass made this video when she was tutted at for using use an accessible bathroom by an able-bodied person.  That incident and her response prompted a campaign to show that there is more than meets the eye when it comes to disability, that everyone should think twice before you judge someone.

For me, living with my disabilities means; chronic pain, debilitating fatigue, difficulty concentrating, forgetfulness, brain fog, unpredictable energy levels, unpredictable severity of symptoms, post exertion malaise, frequent and lingering infections, dizziness, chest pain, shortness of breath.  There are words that go along with all that; Dysautonomia, Ehlers Danlos Syndrome, Primary immunodeficiency, Endometriosis, Adenomyosis, Allergies, Asthma, Chronic Migraine, Chronic Regional Pain Syndrome, CYP2D6 deficiency etc, but the words don’t really say anything about what it all means in real-life terms.

The real-life consequences of those words mean I can not work (my health makes me too unreliable to have a job), they mean that if I am able to work in the future I will not be able to work in a hospital, they mean I frequently have to cancel plans at the last minute, they mean I can not walk far or stand for long, they mean I am unlikely to be able to have children and if I do it is possible I will pass on my genetic conditions to them, they mean I take 30 tablets per day to help my body work at its best and see multiple specialists, they mean I have had multiple surgical procedures, they have contributed to depression and anxiety,

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, because I don’t look sick.

Hi there, I’m Claire and I have turquoise hair.  I have a dog and a rabbit, I love Science fiction, I enjoy sewing and millinery and I live with disability – nice to meet you 🙂

1 Comment

  1. Michelle

    Thank you for putting into words what I often can’t. We need to broaden our definitions of disability and understand that we are a diverse group of people. I still have trouble with the term as my disability is like yours, a combination of medical conditions that make the perfect, fluctuating, not always visible storm. Sometimes I think if I just had one condition/injury it would be easier to see myself as disabled and for others to see it too. But life is not simple for many of us and our conditions complex. And the term “passing privilege”? I hate it with a passion. It’s not a privilege and it diminishes our experiences. Having gone from invisible to more frequently visible now there is no privilege, there is simply different experience. It’s a term that needs to be binned.


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