This is a question many of us will ask ourselves at some point. I had a pretty hard time accepting it, but 4 years later, I can say with pride that I am a person living with invisible chronic illness and disability. And though it has brought me a lot of pain and slowed me down in life from many perspectives, I'm very proud to own these labels. They're a symbol of what I've lived through and still wake up to fight every morning. While that might sound a bit cheesy, it’s the only way I can think to phrase it. Chronic illness and disability are a fight. There’s no denying it.
So – when does your chronic illness become a disability? Many people live with chronic illness and don't identify with the label ‘disabled’. I was one of those people for a few years. Even my own diagnoses don't always cause disability. And sometimes conditions that don't strike as 'disabling' become so for some people. So, let’s start with a definition of disability. I’m going to use the New Zealand version because in case I wasn’t obvious, I’m Kiwi.
This is the definition posted at the top of the list of a few definitions on the employment.govt.nz website. We accept here that the word ‘disability’ is a little open to interpretation. This description, however, I think really sums I up well.
"Disability is not something individuals have. What individuals have are impairments. They may be physical, sensory, neurological, psychiatric, intellectual or other impairments... Disability is the process which happens when one group of people create barriers by designing a world only for their way of living, taking no account of the impairments other people have..”
Note a couple of things about what is written here. The first sentence explains that disability is not something that an individual actually has. Remember that disabled and disability are words that the disabled community have come to own and use to describe ourselves. We use them proudly because of the very things said in the paragraph above. So yes, maybe we have ‘impairments leading to disability due to the society we live in’, but ‘disabled’ is way easier to say.
I really like the way the second part of the paragraph is described. It explains that one experiences disability when the world around them becomes harder to live in than it is for everyone else because it is made for able-bodied and neurotypical people. i.e – it’s full of stairs. Steep frickin footpaths. You’re expected to work a 40+ hour week or be on the benefit. You’re expected to be a socialite, or you’re thought of as a miserable recluse. You can’t take extra sick leave if you’ve got a medical condition that flares up every so often because money is time and time is money. We are all expected to be money-making, socially interacting, society-conforming machines.
But we’re not.
Especially not in the disabled community. Some of us have crippling fatigue. Some of us can’t walk. Some of us can’t stand to touch other people, or we can’t stand bright lights. Some of us don’t or can’t communicate how everyone else does. These can all become disabling symptoms of chronic physical or mental illness. And I realise this is deviating from my title but perhaps they are symptoms of something that is not a physical or mental illness but a neurological condition, like Autism. I just needed to make sure I made that distinction.
The other thing about what it means to have a disability, particularly when it comes to applying for any kind of support, is that you are ‘deemed’ to be disabled when you need help with every day tasks, and your impairment is likely to last for 6 months or more. So basically, if you can’t be completely independent, and you’re not sure if/when you’re getting better, you might be disabled.
But I think the most important thing is that it really is up to you whether you want to identify with this title or not. Even if you receive benefits and assistance for your medical condition – you don’t have to call yourself disabled. Then again, you could. Personally, I found it freeing. Not straight away though.
The first time I was faced with the possibility of accepting that I was disabled was when I applied for a special kind of card that gave me subsidised taxis and public transport because I was disabled. So Even though I had never called myself disabled, I had to prove that in fact I was disabled in order to qualify for this card. I was surprised at how easily I was able to do this. The people at the aid organisation took one look at me and my medical history and signed the forms without batting an eyelid. I walked out feeling oddly diminished. And that was when I realised I needed to do some serious soul searching about what I thought of disabled people. Why did I feel diminished for having that label attached to me? Why did I feel like less? That was wrong.
It was a quick turnaround. Very quickly I realised I needed to own it. I needed to be proud of it. Because as I said earlier in the piece, the label is a symbol of what a person overcomes each day just to live. We have to work harder. We have to experience more pain, more fatigue. But we also appreciate the smaller things more. We love harder. We appreciate deeper. We live stronger. All of this because we’ve had so much taken from us, we hang on to what we have and value it like it’s the gift of life. Disabled people a fucking brilliant, and I’m one of them. That’s awesome. It filled me with pride to come to this realization and it still does every time I think on it.
Now quick disclaimer - that description of a person is not exclusive for a disabled person and it's also not a description every disabled person wants to identify with. Some of us don't want to be seen as any different, and that's cool. There are also a lot of people without disability who would fit that description because they've just responded wonderfully to an unlucky hand of life-cards.Personally I am of the opinion that disabeld people are different, and we should shout it from the roof tops. It doesn't mean we're not capable and not valuable. We're different. We bring diversity. We remind typical people that diversity matters. That's an important place to have in the world.
So – If you think the definitions I have discussed in this piece resonate with you - you might decide to identify as disabled. The main thing is it’s YOUR choice. And the same goes for if you’re someone that already identifies as disabled, and you have someone trying to tell you that you’re not. Or maybe friends or family that are struggling to accept it. If you have decided you are and you fit the description above, then you are. Welcome to the club, you're fucking awesome! Don’t let other people’s opinions let you change what you think. It’s your body and your life. You’re the expert on that. You’re the one that knows how difficult this society is to function in as someone who’s body or mind works differently to everyone else’s. Not them. You.
So, you decide.
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