From “well” to “not well”.

**just so you know, this post is a bit rambly and train-of-thoughty. This is what happens when you blog while on the tail end of a fibromyalgia flare…**

A few days ago, the hashtag #disabilityshocker emerged on Twitter. Disabled people from all corners of the internet told amazing and inspiring tales of how they did real, normal people things like going to the shops on their own, having a job, crossing roads and even *shock* wearing high heels on occasion.

I know. Inspiring, right? Those plucky disableds having lives and stuff, it’s enough to bring a tear to the eye.

But, apart from having fun mocking disabled inspiration porn, it also made me think about something else. In order for people to have this whole “I can’t believe she put her own shoes on, how clever!” view of the disableds in their lives, chances are they will always have known that person as disabled. Not in all cases I’m sure, but in many. If you’ve been disabled your whole life, or even for a number of years, you will have friends and acquaintances who have only known you as a “disabled person”. And who may say things to you like “goodness me, you’re married?” or “oh my goodness I didn’t think you could do things like go to the pub!”

And, being the self-centered sort of person I am, I immediately compared this scenario to my current situation which I’m sure is the situation of many people. Until last summer, I wouldn’t have classed myself as sick or disabled. Now, I’d definitely class myself as sick and I guess you could class me as disabled? I use crutches 99% of the time when I’m out of the house now, and my walking distance has decreased dramatically (it’s literally got to the point where if there isn’t a large cup of coffee waiting for me at the other end I will be very reluctant to waste the energy). However, everyone I know has known me before I got sick. Everyone knows the “well” me.

Reading the comments on the #disabilityshocker hashtag was kinda weird, as I realised that people really wouldn’t say that about me. They wouldn’t say “oh my goodness, look at you leaving the house on your own, well done!” (although it’d be nice once in a while…) because their perception of me is someone who should be able to do that.

So how does this transition work? How does someone move from being someone who is “well” to someone who is “sick and/or disabled”? Well, it’s difficult. Becoming sick is seen as a personal failing. Like we did something wrong, we didn’t work hard enough at getting better, we chose to let this happen to us. If someone was well, and now they’re not, it’s difficult to put that person in a different box. Let me explain a bit:

When meeting someone who is disabled, people will automatically form an opinion of them, just as they might about their gender, or their skin colour, or any number of other things. They may assume that this person will be really sweet and nice, that they might always be cheerful even in difficult situations. That they never moan, and that they always need help. This is the “Charity” or “Tragedy” model of disability, assuming disabled people are plucky and brave and always fight to overcome their disadvantages. But, if you already know someone who then becomes disabled, you can’t put them into that box so easily because you might know that they’re not always sweet and nice, or plucky, or brave because they’re a human being. So they struggle with where to put you now.

Maybe, then, that’s where a lot of the issues with “you’re not really sick” come from. I’m not capable of seeing you as a plucky brave disabled person because I know you’re not that way, so you can’t actually be that ill. I seem to like coming up with binaries so we’ll call this one the disabled/not disabled binary. Based on the charity model of disability, if you can’t be a plucky brave disabled then you’re clearly not disabled at all.

I don’t know. This post is a bit of a mushed train of thought, really (I’m coming out of a rather dramatic fibromyalgia flare so it’s an accurate representation of my current mental state at any rate…). But how do you go from being someone who is “well” to someone who is “not well”?


3 Comments on “From “well” to “not well”.”

  1. The Goldfish says:

    It’s been a long while, but many (most, statistically speaking) have been there, or thereabouts. Worse still is the news that it is possible to shock the world a second and third time; we eventually get recatergorised so firmly as a certain kind of disabled person (e.g. someone who walks with a stick) that the world reels when we become – usually quite gradually, when nobody is looking – another kind of disabled person (e.g. a wheelchair-user or, if we’re lucky, a disabled person who can’t walk very far but can manage without the stick now).

    I think you’re spot-on about a cultural problem of binaries – this thing I wrote about the Disability Hierarchy and the issue of diagnosis may be useful.

    But it does get easier. People adjust or fall away completely and you make new friends who get that your impairments are part of your life. Meanwhile, you’ll be pleased to know, the best people in your life now and the future are unlikely to vocalise shock in relation to anything you can or can’t do; you will always be you, after all.

  2. kotaatok says:

    My posts under the #disabilityshocker tag were what I & family have experienced. We are a mixed bag of disabilities – physical, mental, intellectual, complex needs. Quiet often dealing with individuals whom you expect should know better you get comments made which are paternalistic, patronising and downright thoughtless. Then you get Joe Blow in the street who stares, mutters or steps up to openly vocalise a commentary on you and yours. For example you shouldn’t have children when I am on crutches and hubby in wheel chair. Both the kids were under 5 and we were both in full time work. Assumption we were on benefits and just living the high life being irresponsible on the tax payers dime.

    I have a smart phone not an iPhone but even now I get comments basically saying since I am disabled and therefore making the assumption benefits I should not have a phone. There were tweets last night about BCC panorama program which showed the assumption that since we are disabled we don’t deserve to have nice things.

    You are being outed by your condition and people had a pigeonhole for you now don’t know where to box you. Some will join the support crew some will float away. Your real friends will sit down and ask you how they can keep including you in events. They will be the ones who phone you up to hear if you managed to get into the shower this week. Drop round to make sure you have food in the fridge that won’t poison you.

    You will make new friends who get it who have always known you in this new version of you. Hopefully you get to blend the old friend sets with the new friend sets.

  3. […] I was away, I read this great piece by Emsy about ‘disability inspiration porn’ and the difference between how people perceive […]

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