Sometimes, looking at things from a sideways angle is helpful...

Sunday, 26 August 2012

Life as a cripple

Or "microaggressions"

I'm not going to list my disabilities here, because I think that's unproductive, but I have a mobility impairment that means I use crutches or a wheelchair and affects my energy levels very dramatically, mental health problems, and learning difficulties that affect me on a sensory level, and on a processing level.
I hate typing that all out because it sounds like so much. However, it seemed necessary given the content of this post.

A lot of people will notice the odd thing that would anger or upset a disabled person (and I've decided I prefer that to "person with disabilities" because my disabilities are part of who I am). I'd be surprised if my friends didn't pick up on, for example, "crazy" jokes, but a lot more of these microaggressions go unnoticed, except by me, or the person or people with me at the time.

I am going to preface this with a few statements:

  • This is personal to my experience, I will not cover other people's experiences
  • I'm never going to remember everything that irritates me
  • I don't subscribe to the social model of disability*
  • This post contains sarcasm
  • Pretty much everyone I know has done one or two of these things. Guess what? I don't hate you. I probably got a bit annoyed, probably didn't say anything, and just got on with it. Still, think about whether you want to do them again. I won't hate you even if you do. They just irritate me, contribute to a lack of self-worth in a slow, insidious fashion. And I find that hard.
  • There's also a select group of people who can get away with most of this stuff, the people who know me as well as I know myself. The people who aren't doing it out of pity. If you're one of these people, you probably know. I could list the people I trust like this, easily, though I won't on a public blog.
Edit: I was thinking more about this. I don't want anyone to think I'm having some kind of a go at them for any of these things. I'm not. These things happen, and I live with it. On their own, they're fine, it's the piling on that becomes too much at times. If we're actually friends, then it's fine.
An example. I went away for a weekend. Someone who didn't know me that well told me I didn't look well and to go to bed. I snapped at him. I later apologised. Why? Because I realised he did know me well enough to know when that was actually the case, because I realised he said it because he cared and was worried. Because he actually knew something about these things. I don't always know my limits, and I do appreciate being looked out for. In that case, his comment made me feel a lot easier about accepting his help when I later needed it. I wrote this blog post in a slightly angry way, and I apologise for that, because I don't want people who I consider to be genuine friends to feel like they can't speak freely, or offer help, I just want people who aren't to think a bit more.

Right, so, where to begin? I don't know. I think I'm going to divide this up a bit:

Learning difficulties
This is probably the hardest one to come up with things that really frustrate me for, but I'll have a go.

"But you can't have learning difficulties, you're too smart" - I got this a lot at school especially. I didn't get picked up on properly until Year 7, yet when I was tested, I fell into the bottom 0.1% for some things (and the top 0.1% for others). When you say that, it's not a compliment. It's you ignoring the fact that I do, and that I have to battle against them constantly, and it's you saying that people with learning difficulties aren't smart.

"You read too fast to be dyslexic" - Oh, hi! I didn't realise you were an educational psychologist! Yes, I have an obscenely fast reading speed. Yes, my comprehension is good. Yes, I still have a diagnosis of dyslexia. Why? Because of my processing. I have the same processing issues, I just also happen to be a very fast (1500wpm) reader. On a similar note, don't bother testing that. I gave up reading paper books in front of people because I was so sick of people not believing I was reading properly. Why would I invent this? Yes, I am reading properly. Yes, leave me alone and let me get on with it.

"You don't have learning 'difficulties', you have learning 'differences'" - No, I have learning difficulties. I have difficulty processing. A change in teaching style would help, but it wouldn't correct the problem.

Mental health problems

"You should try this herbal medicine, it's really good" - I appreciate that, but actually I've been told not to take them. Maybe it worked for you, or your brother, or your mother's aunt's boss's sister's colleague's cousin. That doesn't mean it'll work for me. I've got a team of doctors who are trying to help me, and they know what might and might not work. I'd rather stick to tried and tested stuff thanks.

"Just cheer up. You're such a downer" - Cheers. That makes me feel so much better, knowing I'm making other people miserable as well. Don't you think I try as hard as I can to feel better? Don't you think I hate feeling so hopeless and miserable the whole time, and just manage to cover it up better sometimes than others, even feel happy sometimes on the surface, whilst still having a constant "I want to die" undercurrent? I try not to be a downer, I try to seem happy when around people, but when I have a videotape of being raped on replay in my brain, it's not easy. So if I'm being a real downer, assume things are particularly bad for me, and maybe ignore it, or maybe try sensitivity, if you know me, but a statement like that just makes me feel even more worthless. Which is the last thing I need.

"Stop thinking about things that make you sad" - A friend got told this last night, which reminded me of it, but it's something I've heard a lot as well. Ever been told not to think of an elephant? You immediately start thinking of one. If I decide not to think about the things that make me sad, then I list them in my head, then I start thinking about them. I try very hard not to, and I try to keep my brain occupied with other things, but if I feel awful, it's probably not because I was deliberately thinking about things that make me sad, because why would I do that?

"You know depression was created by capitalism, right?" - You know you can fuck off, right? I've had depression diagnosed for 8 years now, medically suspected for 10 years, and they think I've probably had it for 14 years. Whichever of those it is, it's a significant part of my life. Why do I have it? Because I have a chemical imbalance in my brain. Anticapitalism is great, and I subscribe to it, but not everything is a fault of capitalism, and when you say that you're basically denying my reality. You're not in my head, you don't know why I'm depressed, so you can fuck right off.

"You're not really depressed, I've seen you laughing" - The two aren't counterposed. I do laugh. I laughed about twenty minutes ago actually. About ten minutes ago I scanned my room for quick and easy suicide methods, before deciding not to. Things amuse me. It's like a surface level that can be happy, and this constant undercurrent of unhappiness and misery and hopelessness and desperation. I'm glad when things amuse me because laughter can provide a slight let-up. However, you can tell me I'm not really depressed when you've sat up with me til two or three in the morning every night for a week whilst I try not to give in to self destructive urges, okay?

"But you seemed so happy yesterday" - Thanks. Maybe I was. I do occasionally have a happier day. Maybe I wanted you to think I was. Who knows. Either way, telling me that is unlikely to make me feel any better today, isn't it. Maybe if we're close you could help me think about what's changed between yesterday and today, but it's unlikely that anything has. It's far more likely that it's just my mood. And that's okay. That's how it is. Just don't judge me for not portraying depression the way you want it portrayed.

"That was ages ago, shouldn't you be over it by now?" - Yes. I should. I desperately wish I was. I wish I didn't still have nightmares and wake up not knowing where I am and what year it is. That's not the case though. Healing doesn't work on a timeline, and making me feel guilty for not having healed enough doesn't help me to heal further. Some things I'll never be over, I'll just learn to live and cope with, and that's okay, and normal, and understandable. Everyone heals differently and I don't appreciate being judged for the way that I do it.

Physical impairments
This is easily the easiest. I can list situations for hours that frustrate me. I'll try not to!

"Oh, I forgot those stairs, we can just carry you up them" - I want my dignity actually. I don't want to be forced to crawl, or be carried, have all my anxieties about my weight become even more obvious. Nobody else has to lose their dignity to enter here, so why should I? When you forget about those stairs at an event you invited me to, you're also forgetting about my right to participate, you're forgetting about making it a safe space for disabled people. I want to be able to engage, but I'll either be so mortified about being carried, or in so much pain from trying to walk, or so exhausted from crawling, that I won't be able to. If you did forget about stairs, apologise to me, and ask what I want to do, see if you can move whatever it is to somewhere accessible, and give me my own right to decide. A lot of the time I'd prefer to crawl than be carried, and that's my right. I'd rather lose dignity that way and keep my independence than be forced to be visibly dependent on other people. You might think being carried or aided is more dignified for me, but I don't, and I'll let you guess whose word matters more here.

"You can walk, why do you need a wheelchair?" - None of your business. Do you think I'd really go through the hassle of using a wheelchair if I had any other option? If I want or need you to know, then I'll tell you, otherwise work with the information that I give you. I especially hate this one when it comes alongside a judgement about using one when I can walk. Any of the friends that have had to carry me home in a semi-conscious state will tell you that I'm uncomfortable enough about using one, and this just makes matters so much worse for me. It's what makes me force myself to do far more than I can, and then end up really unwell. It's not fair of you to pass judgement on me for using a wheelchair like that, when you have absolutely no idea why I might be using it.

"I'm sorry, you can't get on this train, you didn't give us 24 hours notice" - Fuck you. I'm a student. This happens a lot, alongside getting shouted at and sworn at. What student plans their life out 24 hours in advance, knows, when going to the pub, or travelling across the country, or meeting a friend, exactly what train they'll be getting back? I don't. When I know, I book assistance, but most of the time, frankly I have no idea what I'm doing when. That's okay. I shouldn't have to. I shouldn't be expected to plan my life in advance. I just want to live a normal life, and not be treated like a massive burden for needing the occasional ramp.

"You don't look sick" or "You look well" - That was 'nice' of you, but actually my leg has been cramping for three solid days, the world is spinning slowly around me, and I can barely stay awake. Good to know I look well though. This statement often feels like a judgement on me - feels like "what do you mean when you say you're ill, you're obviously not". I know people mean well by it, I really do, but it doesn't help. I don't want to look like a languishing waif the entire time, so I'm very glad that I don't, but not looking like death warmed up doesn't mean I don't feel like death warmed up. Thankfully my closest friends are able to tell how I feel by the more subtle signs, but if you tell me I look well after I've taken my 8th codeine of the day by midday, expect a death glare. Because I'm not well.

"Sorry, there's already a pram on this bus" - This happens to me a surprising amount. I realise that people with babies also have to travel, but prams fold, and I can't get out of my wheelchair and fold it without a lot of pain. I'm not allowed to drive and it's not physically possible to wheel everywhere, I have to get the bus, and when the buses are every half hour, not being allowed onto one can really fuck up my schedule. I realise there are times when folding a pram is totally impractical, but when it's not, I'd really appreciate it if people did so. Most of the time, it's not the person with the pram to blame, it's the bus driver though. The bus driver who'd rather pull away than notice that the person with the pram is busily folding it then and there, so that I can get onto the bus.

People speaking to the person with me instead of me (also people assuming whoever's with me is my carer, also people giving *my* change to the person with me, or even the stranger behind me in the queue) - Disabled people have friends too. Not everyone I'm out with is my carer. Being in a wheelchair hasn't affected my ability to communicate. There's no reason for you to assume my friends are carers, or assume that I can't communicate, and if I paid you for an item there's especially no reason to give the money to someone else. When you do this you're basically saying that being in a wheelchair makes me incapable of functioning as an independent adult. It doesn't, except maybe when I have to go up hills in the rain. If I'm too ill to communicate, the person I'm with will be talking for me already. They know me better than you do. Even if they are, it's polite to respond to me, and give me the option of speaking. I'm not just a wheelchair, I'm a person in a wheelchair.

"Are you okay? You don't look well. Go to bed" - Often, this is one of the most well-meaning ones on this list. People who don't know me that well, worrying about me. And if that's the case I'll tell you why it irritated me, and you'll apologise, and we'll stay friends. What annoys me about this is the presumption that I don't know my own health, and that I'm not capable of making my own judgements. Frustratingly, this is often true, and if I know, like and respect you then I'll probably listen, and if I don't know you so well, then at least you care, but I want to be independent. I don't want attention drawn to my various health problems, and this always entails just that, people drawing attention to my situation. I'm still not entirely sure whether this belongs here or not though, because it's more complicated than a lot of them. ETA: I think it frustrates me more because it highlights to me how incapable I am of making good decisions about my health, rather than because it's a silly thing to say. It is true though that if I went to bed every time I needed to, I'd rarely get up.

"Why are you in a wheelchair? What happened?" - I'm not interested in people being nosy. If I want you to know, I'll tell you. I covered this a bit earlier with the one about being able to walk, but it's different. It implies you have a right to my body. In some ways for me this fits in with consent, it's you demanding some right to my body that's mine to give you. Rest assured, if I want you to know, I'll tell you. If you want to know for some reason other than basic curiosity, explain why you're asking and I'll probably answer. If you're just being nosy, I'm not interested in humouring you.

"You're on crutches instead of in your wheelchair, you must be better today" - When I'm on my crutches I feel a lot more disabled than when I'm in my wheelchair. When I'm in it, with a bit of help with hills and accessible buildings, and still with the limits that my pain and energy place on me, I can live more or less a 'normal' life. When I'm on crutches, within 100m, if that, I'll barely be able to continue, most of the time. If I use them it's probably because I'm in an inaccessible situation where my wheelchair is impossible, or my wheelchair's broken, or, rarely, I'm trying to prevent my leg muscle disappearing entirely. It's not a comment on my health, and actually if I'm on the crutches I'm far more likely to need your help than if I'm in my wheelchair.

"Have you tried xyz?" - When coming from other people with mobility impairments, this can be useful, but if you don't have one, just think about whether it's logical, and whether I'm likely to have tried it already. It just gets frustrating having everyone in my life trying to play doctor, so unless you're pretty convinced it's something new and different, it's probably best for both of us if you don't mention it. I like my friends to be friends and my doctors to be doctors, and get irritated when this line's being crossed. If it's a genuinely helpful suggestion that I probably wouldn't have tried, then I'll give it a go, but have a think first, about whether I'm likely to have tried it already.

"We can't find somewhere accessible, sorry" or "We can't afford to do this somewhere accessible, sorry" - This depends on the situation a bit. I realise not everyone has the money or energy to hold everything somewhere accessible, but notice the message that you're sending when you don't do things in a wheelchair accessible space - you're saying you don't want the voices of wheelchair users. You're excluding us from your movement. An alternative here might be to ask us whether we can help at all, whether we know of anywhere. Saying this, I'd rather be told beforehand, so I can decide whether I can spare the energy to get into somewhere inaccessible, than not be told beforehand, because then I'm faced with a massive energy expenditure either way.

"Oh wow! You just got onto a bus!"
- I once got a round of applause for getting onto a bus. No joke. It was ridiculous. Generally I do things in the quickest and easiest way possible for me. If that means a wheelie rather than a ramp, then I'll do it that way. I'm not actually a trained monkey though, and I'm not here for your entertainment. I'm just doing the best I can to go about my daily life, and I'd prefer it if people didn't make a big deal out of me doing something that's normal for most people. If it's a lot of effort for me, you know me really well, and you've watched me learn to do it, staircases for example, then congratulate me quietly, but in general I'd prefer attention not be drawn to me doing things, because I just do what I can.

"Are you in the paralympics? What's your sport?" - Not every young person in a wheelchair is a world-class athlete. By comparing my unfit self to the paralympians you're diminishing the amount of strength and effort they put in to being at the level they're at. You also make yourself look like a fool, because there are a lot more wheelchair users than there are paralympians. It's also none of your business. If I was wearing a Team GB tracksuit, it might be, but since I'm not, then if you ask, expect one of my sarcastic answers. "Yes, I am actually! How on earth did you recognise me? I compete in the synchronised wheelchair jumping event!"

"Can I help? Let me help you" (followed by them grabbing my wheelchair)
- I genuinely appreciate it when people offer help. I find it hard to accept it, but I do when I need it generally. What really annoys me is people who decide to help when I've said no, or even worse, don't ask, just grab me and start pushing. I'm functioning independently actually, and I don't want your help. The worst one is when I'm getting down a step. You offer me help, I say no, and drop into a wheelie. You grab the back of my chair. I go over backwards and crack my head on the ground. If I've said no to help, please just step away (unless you know me and my chair so well that you know it'll be of use, and we're close enough that I tolerate it).

"Do you know 'x'? He's in a wheelchair too!" - My disability isn't the only thing that exists about me actually. When you ask me this you reduce me to it. Most of my friends aren't in wheelchairs, because I don't pick my friends based on obscure medical conditions. This is worsened by you then telling me all about 'x' and what's going on for them medically. It's none of my business. Just because we're both in wheelchairs doesn't give me the right to know their personal and private medical information.

"You could have at least said 'thank you!'" - I try to be polite, I really do. When people do irritating things that make it so much harder for me, like the aforementioned grabbing my chair, or giving me help when I refused it, I don;'t feel inclined to thank them. This is also, for me, the difference between charity and solidarity - charity you do to feel good and be thanked and appreciated, solidarity is something you offer because it's the right thing to do. If you've just made my life harder, even unintentionally, I'm unlikely to be in the mood to thank you, and I don't really like being accused of being rude for not thanking you.

People using my wheelchair as a handle / footrest / leaning post. - My wheelchair is an extension of me, and an extension of my body, and my personal space. If I know you well enough that you'd put your feet up on me, then do the same to my wheelchair, otherwise realise that it's a part of me. I'm very attuned to my chair. I can tell if a spoke's loose, so of course I can feel it if you have a foot on it, it changes the balance. I have personal space issues, and unless I know you well enough to let you in, I'm going to get very annoyed if you assume you can just interfere with my chair like that. In a similar vein, I'm not a table or a shopping trolley. You can't just dump stuff on me without even asking and assume that it's fine.

"Have you read this article about the cuts? It's really good" - When an able-bodied person is talking about cuts that specifically affect the disabled, it's awful, and sad, and so depressing, and did I know about it? The chances are, I didn't. This is because these cuts are happening to services that I need in order to live, and reading about the cuts terrifies me. If I lose these services, I'm completely and utterly fucked, so I'd really rather not know a lot of the time, because I don't need to be any more depressed than I already am. Therefore, please think and be sensitive - what's is an awful thing happening to other people, in your eyes, in mine is an awful thing that could happen to me, and could kill me, or drive me to suicide. Therefore, to be honest, I'd rather not know.

With the wheelchair especially, it feels as if the scales are set against me. Either I look well when I'm not, or I'm being told how to look after myself when I already know. Either everyone wants to know from me what's wrong, or everyone wants to tell me what's wrong, and how to recover. Either I'm expected to be some kind of supercrip, or treated like I'm completely incapable of daily function. None of these are true. I can look after myself, but I do sometimes need help (and I appreciate offers from friends or strangers, as long as people can also take no for an answer). I find it very frustrating and upsetting when people do these things. I hate not being allowed onto trains, or being shouted at or sworn at by train or station staff for needing a ramp, or being abandoned on aeroplanes for an hour and a half whilst people find the lift, or being forced to crawl onto a busy megabus. I hate all of these. I hate the fact that society's so inaccessible.

I realise with a lot of these microaggressions, people aren't meaning to be cruel, but the fact is, they still hurt and upset me. I still lose my temper, and there's nothing worse than "but they were trying to be nice / just being curious. You're so unreasonable" when I do lose my temper and rage. Because these things happen to me several times a day.

As a disabled person I'm expected to have no humanity. I'm a "wheelchair" for society's purposes. For ramps, "we have one wheelchair". I'm reduced to being the object that allows me any independence. I'm so much more than that, but for as long as I'm forced to fight against these things every day, it's hard to show people I'm more than my disabilities, because they're all people notice. And next time you think "why is he so *angry*?", ask yourself whether you said any of the things listed above.

*The social model of disability, in short, suggests that it is not that people are disabled, but that society is inaccessible, and were society properly accessible, we would no longer be disabled - that we are disabled by society, not by our bodies. I disagree with this because a) it is impossible to meet everyone's access needs - there are times when they conflict, for example when someone with autism finds it impossible to speak slowly enough for a sign interpreter to translate something into sign (which I have seen happen), so as a result we can never make a society truly accessible to everyone, and b) because I feel the social model ignores impairments. I will still have constant pain and fatigue, whether or not everywhere's accessible.

4 comments:

  1. I am glad you wrote this. A good reminder of you know, the fact you're a human being.
    (Not that I'd forgotten bro)

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  2. I have M.E. and get so sick of 'have you tried xyz?'. I get that people ate trying to be helpful but I'm under the care of a specialist & having been ill for over 10 years know my own body. What's worse is when people then act as though if you don't immediately follow their untested 'cure' that they've heard of second hand, that it means you don't really want to get well.

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    Replies
    1. Yeah, I didn't articulate that well, but that's the most frustrating bit. A lot of the time the advice I get in that line is about walking - that if I just walk regularly I won't need a wheelchair any more. A) I know that's bullshit, and B) I'd rather have a life in a wheelchair, than no life, and no wheelchair.

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  3. Needed to read this tonight Matt. Am currently sorting through an appeal for DLA whilst also preparing for another appeal (also for DLA!)

    So much of these comments that people make are actually quite triggering and I think I snap sometimes too. Sometimes about silly stuff that I shouldn't. I never feel 'well' but most of hte time my attention is not drawn to that at every waking moment until somebody does something to alert me to it. i.e at the shop a moment ago the shop keeper started pointing randomly then rather than explaining, just started taking my shopping off me. When I dropped a bag outside he came running out to help even though another member of the public had stopped to politely ask. I didn't need the reminder of the crippiness and actually I kind of didn't want anyone noticing that I had just bought a load of junk food to binge on or that I was wearing lounge pants (aka posh pjs).

    On the social model front - I don't entirely agree with it myself but I just felt the need to point out that impairment, disability and disabled are seen as different things in the social model. The reason why impairment is not in and of itself is not seen as 'disabling' is because 'disabling' refers to something external where as impairment is impairing. Hope that makes sense. It's exactly what you said anyway aside from attributing it to the social model ;)

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