Can we talk about this?
Like, no. Just, no. No no no.
If you’re short on time today then feel free to stop reading now and get on with your afternoon, because to be honest- that’s a pretty good summary of what I’m about to say.
I thought I’d blogged about this issue before, but a quick trawl through old posts didn’t turn anything up, so possibly I *thought* about blogging about this before, but then bit my tongue. Hard. The way I frequently do.
But I’m feeling a bit, umm…sensitive at the minute. After a week in which the kids went back to school and I went back to my fitness regime (that had given way during December to evenings under duvets and increasing volumes of Baileys), my body is protesting, I guess you’d say. Not quite dramatic enough for me to bust out the word ‘relapse’ but enough to mean that I am a quivering wreck- literally. My hands have been shaking near constantly for about three days, which leads to anxiety, which leads to panic attacks, which leads to adrenaline- which REALLY helps*, obviously.
And the thing is, throughout all this, I can’t get this fucking meme out of my mind.
It’s not the image. Let me repeat, for the cheap seats in the back: IT’S NOT THE IMAGE! I don’t know why I’m even bothering to emphasize that, knowing full well there’ll still be someone out there who thinks I am bitterly opposed to such a powerful image of a disabled person displaying power and strength and all the things we’re told by society, a disabled person can’t have/be. It’s an incredible image. My problem is not with the image. My problem is with the slogan someone has helpfully superimposed onto it.
‘ The only disability is a bad attitude’
*raises eyebrow until it lifts off my forehead and floats off into fucking space*
Anybody who thinks that the only thing preventing people from accessing public spaces, education, work opportunities, social events and from taking care of their activities of daily living is their attitude, should refer to the diagram below:
Most people reading this will know why this kind of able-ist bullshit bugs the crap out of me, but in case you’re one of those who doesn’t- here’s the deal:
Three years ago I went from being a busy young mum of two small boys, working part-time nights as a nurse on a neonatal unit, running (ok, jogging) 10ks and generally ‘leading a normal life’ to lying in a hospital bed, largely unable to move.
But the only disability in life is a bad attitude, right?! So I got my shit together and got me the fuck outta that bed and GOT ON WITH THINGS. Because really, it was only my bad attitude holding me back, amirite?!
Umm…no. You see what was actually holding me back, was my body. Specifically my immune system, which had decided my nervous system was a foreign invader and begun stripping all my peripheral nerves of their myelin sheaths. Don’t know what a myelin sheath is? Well, let me tell you- they’re important af. Without them, your nerves can’t transmit signals . So, to be clear- my brain was like: LET’S STAND UP
And my legs were like: …………..
This kind of message, this idea that anyone can overcome ANYTHING as long as they’re DETERMINED, sounds very aspirational and wonderful, but there’s one teeny tiny problem- it’s not true. And it’s damaging. It’s damaging because it makes people- vulnerable, scared people who’s lives might be falling apart, who might be in pain and terrified feel RESPONSIBLE FOR THEIR PROBLEMS.
I know, because I literally sat on my toilet, stared at my legs and thought “Maybe I just didn’t try hard enough last time…come on legs, we can fucking do this.”
And guess what happened?
Of course. Because pure longing doesn’t actually repair biological damage.
I also know because I told myself, in the brief time I spent at home deteriorating rapidly, that I CAN DO THIS. I SHOULD BE ABLE TO DO THIS.
THIS being: EVERYTHING. Driving (yes, I cringe now but I drove around Manchester unable to feel the soles of my feet, unable to change gear one-handed. I could have fucking killed someone but hey, got to admire my can-do attitude right? NO.) Looking after my kids- even though I couldn’t lift my one year old. Dressing myself- even though my hands shook so badly I couldn’t fasten my bra. Walking down the stairs- even though I fell, multiple times. Yes one fall down the stairs was not apparently enough to convince me that I could not actually ‘do this’. And what’s even more terrifying is that I was pregnant. Pregnant falling down the stairs. We all know how this ends of course, i.e. not well. It turned out, to my relief that those falls- particularly the one bad fall I had, hadn’t actually caused my miscarriage, and that the pregnancy was doomed from the start. But I didn’t find that out until a month later. A month is a long time to carry that burden of guilt.
Able-bodied people (because to be honest, I’m pretty sure that’s who images like this are for- to make able-bodied people feel GOOD and INSPIRED and MOTIVATED etc) suggesting that anything can be overcome with the right mentality are not only grossly mistaken but also contributing to the societal idea that disabled people come in two categories:
1.Wonderful celebrated specimens of humanity- patient, humble, kind, achieving above and beyond what seems possible even for able-bodied people.
2. Bitter, twisted people who ‘let their disability rule their lives’.
We all love “Doctors told me I would never walk again but I did!” stories. Not so much “Doctors told me I would never walk again and actually they were right and I still can’t walk but hey guess what I’m still a valid fucking human being and actually not your motivational piece” stories.
Disabled people, sick people, chronically-ill people are told “you don’t look ill/disabled” and on the face of it- yes it’s a compliment. Who the fuck wants to be told they look like they’re about to dodder off this mortal coil?! But on the other hand, it’s a bit of a backhander isn’t it? “You don’t look disabled” i.e. “Well done hiding your disability. God it would be awful if us ‘regular’ folk were confronted by the notion that we’re all just one biological failure away from disability. Thanks for keeping it tucked away there, sport.”
I love an inspirational picture/article as much as the next person. I love stories where people overcome barriers- regardless of what those barriers may be- to achieve things that are important to them. I don’t want people to stop pushing themselves, to stop shouting from the rooftops when they achieve things that they, or other people thought impossible- whether that’s pull-ups in a wheelchair or just wiping your own ass when you’ve previously had to rely on others to do it.
But let’s not kid ourselves that pushing ourselves- that Positive Mental Attitude is the only thing that’s required. For disabled and chronically ill people to achieve their full potential- their personal, individual full potential- not the dreams and goals YOU set for them, but their own, a can-do attitude is only a very small part of what’s needed. Societal acceptance, and wide-scale change is also pretty essential. Psychological input, a strong support network, and acceptance that some things might not be possible. Reassurance that even if it turns out you’re NOT capable of pulling yourself up in your wheelchair, or indeed wiping your own ass. that you’re still- shockingly- a valuable person, who deserves to live and is worthy of time, and space and respect.
Of course, my story falls into the “happy ending” category- so far at least because I did walk out of the hospital. It took time, but I hobbled out on crutches and now my remaining crutch waits in the hall, for a day in the future when I might need it again. Because the reality is- it isn’t a “happy ending” until The End. And I’ll be living with CIDP for the rest of my days, and I’m really hoping I have a lot of those left. There’s no guarantee I won’t deteriorate, that I will remain ‘inspirational.’ Will I be less worthy as a human if I can’t ‘perform’ physically, if I can’t contribute to society in the only way it knows how to measure- labour and profit?
So when I see able-bodied people sharing the above meme, complete with caption (note, not the stand alone image) you should know that I don’t think “how wonderful that you’re celebrating this man’s achievement” I think “Do you even know what the fuck you’re talking about?!”
And if that makes me over-sensitive, well it wouldn’t be the first time I’ve been accused of it. And perhaps you’ll be better able to understand my ‘sensitivity’ when I tell you that I had a panic attack in my bathroom this morning because as I brushed my teeth I caught sight in the mirror of how badly my hand was shaking, and from there it was only a brief leap for my brain to the memory of when I first bought an electric toothbrush (summer 2013) because I no longer had the strength required to move a regular toothbrush around my mouth. Yes, I was really that bad. And it only got worse- the electric toothbrush was a temporary fix, but as my condition deteriorated it became too heavy- I had to use two hands to hold it, and then eventually the concept of brushing my teeth unaided became a pipe dream. But throughout it all, of course, I maintained my positive mental attitude- which only served to make me an utter bitch to be honest, because I felt I should be able to do all the things I couldn’t and if I couldn’t….well I just wasn’t trying hard enough. That kind of pressure is destructive. Just ask my boyfriend who bore the brunt of most of my outbursts
“I should be able to do this!”
“Why can’t I do this?!”
“I don’t want to be like this”
“This can’t be my life”
It’s hard enough to accept you’re not in control of your own body, life, future, without being expected to OVERCOME YOUR BARRIERS and FIGHT YOUR DEMONS and ALSO BE INSPIRATIONAL FOR ABLE BODIED FOLK TOO PLEASE.
So please, stop with the able-ist propaganda. Yes some disabled and chronically ill people might put your complacent asses to shame, but others might be struggling to exist without help, and perpetuating the myth that ANYONE can overcome ANYTHING if they only want it badly enough, is not just insulting, it’s damaging.