Archive for the ‘ BADD ’ Category

Belated BADD Post – What’s Your Excuse?

In any week I’ll see at least one picture of a disabled person doing ‘something’, often exercising, emblazoned with the caption “What’s your excuse?” or something similar. Here are some examples;

A picture of a quadruple amputee lifting weights with the caption “No excuses”
A before and after becoming a body builder picture of an amputee with the caption “Excuses. Let’s hear yours again”
Young boy, a double above the knee amputee with running blades, running with the caption “Your excuse is invalid”
This one has been doing the rounds again recently on facebook. A picture  of a double just below the knee amputee  using prosthetics rock-climbing. Normally shared with the caption “What’s your excuse?”

I hate, hate, hate these memes and I think you should have a problem with them too. “Why?” I hear you cry! “These pictures celebrate the achievement of overcoming disability/adversity! They are a force for good!”. Well I don’t agree, and because this is my blog and I’m writing this post I’m going to tell you exactly why I don’t agree.

They assume people reading are non-disabled.
These messages all seem aimed at non disabled people which is an issue in itself. It shows that on some level they are “othering” disabled people. Here disabled people are inspiration, not audience. If you want to build a world where disabled people are treated as equals then that’s not the way to do it.
If, on the other-hand, it’s not assuming that it’s audience is non-disabled then that’s also a issue. These things are really insulting to disabled people who for one reason or another can’t just pop out and climb a mountain and they place undue pressure on disabled people to conform to some heroic ideal. I’m going to talk more about these things in the rest of the post.

They forget there are many vaild reasons people can’t do those things.
Money. All of us have to grapple with the cost of getting to venues, paying entrance fees/membership and buying equipment which is often prohibitively expensive. If you are disabled then extra costs like adapted prosthetics  mobility equipment  care also cost a lot of money. A decent all terrain electric wheelchair is at least £15,000, then you need a specialist car or a trailer to move it in… It all adds up to quite a lot before you factor in the costs of powerful, safe to use grappling hooks and strong rope so you can try your hand at mountain climbing.
Time. Turns out disabled people work and have social commitments, go figure. Finding the time to train to a high level isn’t easy.
Location. I’m telling you now that even from a UK perspective a disabled person in London has a better chance of finding a local accessible gym than a disabled person living in the rural Scottish highlands.
Opportunity. It’s great that some people know the right people or get lucky with charity support, but they are the exception to the rule.
Disability, yeah I went there. An amputee with running blades may well be able to run 200m. I, as a non-amputee with chronic pain who cannot walk 30m without being sick simply cannot run 200m, and as it stands will not be able to run 200m in the foreseeable future. I could do it in my wheelchair but that’s not the message. The message is that just using a wheelchair isn’t good enough, you need to go beyond that to be “normal” and to fully overcome disability.

These pictures often forget that disability is a social not medical construct.
Most of us, the UN included subscribe to the social model of disability or a variant of that. The social model states that disability is the result of having an impairment in an inaccessible society. In simpler terms it says being an amputee isn’t what disables a person, it’s not being able to access good prosthetics, wheelchairs, aids, adaptations, education, employment and health care. It’s living in a society that on a institutional level thinks disabled people aren’t as capable, moral, ‘normal’ as the rest of us. These pictures forget that to be in the position the young boy is, running on a good track, with expensive running blades one has to have a certain amount of social privilege.  As this article explains, blade running isn’t the reality for most amputees.

Disabled people are not there to inspire you.
It may surprise you but when I personally go down to the gym, swimming pool or even supermarket I’m not doing it to inspire non-disabled onlookers and to send a message that disabled people who aren’t doing the same just aren’t trying. I’m just living my life and doing what I want to. The same way you taking a trip to the shops isn’t a statement other than “Hey, I need some milk so I’m going to buy some.”

These just feed the “super-crip” stereotype.
The “super-crip” stereotype is fairly well known in disability circles, but if you don’t know it I’ll quickly explain. When disabled people are not being held up as objects of pity (see messages like “this poor girl suffers hourly with her impairment, sending £5 will help us do what we can to put a smile back on her face”) they are often held up as “hero’s” who strive to overcome their disability. Those that “overcome” their disability by doing something that disabled people aren’t supposed to do – like sport, high level exercise, having a high powered job, smiling daily, sometimes just going outside and talking to people – are lauded as super-beings. Of course disability isn’t that simple. It’s not a case that we are all hero’s nor are we all objects of pity. We can be both or neither or, frequently, a huge mix of everything in between. Just like non-disabled people. Yes we have access issues, yes sometimes our lives have more challenges than non-disabled peoples but that doesn’t make us hero’s for just getting on with our lives. In fact by assuming it does it either suggests that you buy into the myth disability is miserable or that disabled people just aren’t as good as non-disabled people. Which brings me onto my final point…

They assume non-disabled people are better than disabled people.
The basic message is “If a disabled person can do it then anyone (and I mean anyone) can!”. Do you see people putting up pictures of Usain Bolt saying if one non-disabled person can win an Olympic gold then any non-disabled person can? No. Why? Because it would be a stupid statement to make. Clearly, given all the people who fail to win an Olympic gold every year it’s not that easy. We, as an audience, allow Bolt to have personal skill, talent and dedication to his sport above and beyond the levels the majority of us have and we celebrate him for that. We don’t feel the need to use him as inspiration porn in the same manner we do disabled athletes. Why? Because it’s hard to believe we could be better than Usain Bolt if we tried. Whilst apparently it’s not hard to imagine we could be better than a disabled athlete, because at the end of the day, on some level we simply don’t think disabled people are as good as non-disabled people.

That is why I don’t like these things. They are insulting, ignorant and they prop up damaging myths about disability.

24 Hours In My Life – BADD 2012

Blogging Against Disablism Day, May 1st 2012

It’s Blogging Against Disablism Day today and I’ve been having trouble working out what to write for this piece. There are so many aspects of disablism I think the world needs making aware of and so many assumptions that need challenging I find myself unable to choose one and without the energy to write a 10,000 word essay on the subject.

Instead I’m going to blog 24 hours in my life in an attempt to give people a little bit of insight into a fairly average day in my life.

3am, 30th April
I’m awoken from a dream in an awful lot of pain. I check the time, reach for a handful of painkillers and lie as quietly as I can waiting for them to kick in. Eventually they do.

I wake up with the taste of vomit in my mouth, luckily I’ve not been sick. I then doze for a bit feeling exhausted after some very disturbed sleep.

I sulk because I need a wash but my partner has left for a doctors appointment before university. I have a bath board to help me get into the shower but I don’t think I can stand safely whilst in this kind of pain. I need support and I don’t have it. It isn’t my partners fault, he shouldn’t have to stop living to wash me. There should be help available from government but there isn’t because my needs are not high enough.

I start getting dressed. Bending & stretching hurts so much tears are pricking my eyes and I can’t find any warm looking clothes that will be comfortable over my slightly swollen & sore abdomen. I’m pretty convinced by now my bowel is obstructed and that’s what is causing today’s flare up. I try not to worry myself, this happens about once every week and it normally resolves itself pretty fast.

I finish getting dressed, taking a breaks to tweet about the news contributions based ESA is being removed from people after a year and how it increases disabled peoples dependency on carers (who are more often than not family, partners or friends and who are not paid or trained to help and as such are statistically the most likely to abuse the person they are caring for).

Time to go to psychotherapy to deal with the PTSD. I can’t walk 3m without tears but I have to somehow pull myself from the house to the taxi using only my crutches as I can’t physically navigate my wheelchair up the steps to the road on my own. The council won’t provide us with a wheelchair ramp because I’m not eligible for a NHS electric wheelchair (I would have to be completely unable to walk).

Taxi driver has noted the tears in my eyes and the crutches and asks “What’s wrong with your leg then?”. This happens pretty much every time I get a taxi alone. Sometimes I say “It’s personal” or “I’d rather not talk about it” but that can lead to the drivers getting pissy because I’m being rude (oh the hypocrisy). Today I don’t feel up to risking a confrontation by not answering so I explain I have damage inside my abdomen effecting both my organs and nerves. Today the driver nods and after getting a bit depressed on my behalf when I tell him there is no cure he gets on with driving. Often I get a lot of people trying to ‘help’ by suggesting I get a second opinion (I’ve had 4 so far), go private (like I can afford that), trying some kind of ‘alternative’ treatment (I’m not paying for a placebo at best) or they tell me inspiring tales because I need cheering up. Actually, all I want from them is a taxi ride with a bit of banter about the weather or local roadworks.

Psychotherapy starts. It’s personal and exhausting.

I order another taxi. This driver gets a call just after I get which lasts until in so this journey is blissfully question free until I have to ask him to pull over so I can throw up in a drain. The driver tells me off for being sick, I can’t be bothered to argue that it’s because my bowel isn’t moving properly so I nod along and am quite pleased when I get home.

I get home and I’m in agony. I need to get to bed but there is a flight of stairs in the way. I have to shuffle up them slowly on my bottom, crying with pain as I go. I look at the bathroom remembering how I still really need to wash but I know I can’t wash myself alone. It makes everything feel a bit worse. We asked for a stair lift to negate the stairs but we couldn’t get one because we are in a privately rented house, nor could we get a hoist for the bathroom.

I make it to my bed where I lie down and take some more pills then eat a sandwich my partner made me. I realise that I don’t have the spoons to manage the stairs again (the kitchen is downstairs, the bathroom and toilet is upstairs) so I settle in.

I faff on the internet and start writing this. I also listen to the phones ringing downstairs and realise I left my mobile as well as the house phone in the living room. There is no way I can get to them so I let them ring and hope it’s nothing important.

More pain and sickness, I feel a naff and I want to call someone but a) I can’t get to a phone and b) there isn’t anyone I could call about it. Plus it’s not like this is a rare occurrence. After a few years of this happening a “I’m in agony and I can’t stop being sick – no there is nothing anyone can do” call looses it’s effect. I deal with it by trying to keep myself distracted.

A ‘friend’ on FaceBook has a rant up about sick-note benefit scroungers and unemployed people that have children. I’m already low on spoons so I have a cry. People are being horrid about alleged neighbours who got a free car because they’re “a little depressed”. I state that is not how the system works and if they are eligible for Motability there will have been a good reason backed up with medical evidence (because getting DLA is a nightmare in itself) but I’m told I don’t live in the real world. I’m also hurt I would like children one day but because I can’t work I feel like everyone would hate me if I had one. I walk away from the debate feeling frustrated about the levels of ignorance and pernicious misconceptions surrounding disability benefits and human rights in general.

I blackout after going to the toilet.

I fall asleep.

I wake up from a nightmare my PTSD is flaring and I’m scared as well as not sure what’s going on. 

I’ve calmed down and I’m not 100% sure what I’ve been doing in the last hour. My partner comes home and keeps an eye on me whilst I deal with the pain.

Pain spikes A LOT. After some screaming and crying it dies down.

I’m tired but the pain has lessened and I feel like I’ve got a few spoons left. My partner helps me get ready to go visit some friends in the evening.

The evening has been dogged by pain and nausea but my painkillers are keeping it at a level I can manage. Eating has been really difficult but I’m extremely excited that I kept my dinner down.

I’m ready for bed and trying to get some sleep but it’s disturbed by pain and nausea.

I’m awake with pain and feeling pretty rubbish. I haven’t had a good nights sleep in a while and I’m hoping this won’t be another night. My painkillers aren’t stemming the pain and I’ve got one eye on the Oramorph just in case. Happily I manage to drift off after not too long and my day is over.

So that was a pretty average Monday. I’m sharing this (minus some of the more embarrassing parts of dealing with abdominal issues I don’t want to put up online, nor do I imagine you want to read about) to try and raise a little awareness.

My friends I saw in the evening probably have no idea about what happened during the day, they will have just seen me being a bit uncomfortable and chatting and laughing with them. Most don’t notice when I excuse myself to go to the toilet where I blackout or vomit or cry and scream silently, which is ok in some regards – I don’t want a fuss made normally – but it also masks my reality. It makes it look like my pain issues aren’t always around and aren’t all that disabling. It also hides the problems caused by a lot of damaged abdominal organs and the mental health issues stemming from the PTSD.

I guess what I’m trying to illustrate is that much of the really rubbish parts of chronic illness/disability get hidden behind closed doors. This post is a vague attempt to shine a light on that. People never get to see me when I’m bad because I don’t want them too. I won’t invite a friend to see me when I think I’m at risk of wetting the bed and I won’t go out if I don’t think I can manage the pain or my PTSD for the length of the trip.

Best of luck to all the other Bloggers taking part in Blogging Against Disablism Day 2012 x

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