it’s THRILLING HEROICS:30, y’all

May 1, 2008

blog against disablism

Filed under: health — jayangel @ 9:17 pm
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Today is Blog Against Disablism Day, and the start of M.E. Awareness Month, so I am going to talk about something I really only mention when I encounter it and am hurt and angry; albeism. And this time, it’s not going to just be about me receiving shitty treatment as a disabled person; today, I am going to talk about healthy privilege.

Privilege, for those unfamiliar with the term, is having the advantage in society. Privilege means the human social world was built for you and people like you, and anyone without that privilege is at a disadvantage in interactions with you; you hold the power, the “normality”, and use it to override and invalidate the other point of view. Sometimes this is overt; mostly it is not and you won’t even know you’re doing it. It’s just there, and until you examine it you won’t notice. There are many kinds of privilege, and a lot of people have some but not others; for example, I have white privilege, class privilege, and probably more I haven’t noticed (or rather, had pointed out to me yet), but I don’t have male privilege, cisgendered privilege, straight privilege, or healthy privilege.

So what is healthy privilege? It’s everything that you (general you), as healthy people, can do without thinking, but I can’t. It’s in the smallest of things that you wouldn’t think of, because you’ve never needed to. Having healthy privilege means not being kicked out of a flat just because you had one bad day and spent 45 minutes in the bathroom and “it’s more likely you’ll get sick again because you already are sick” (and nobody wants to be around that); it’s not having to fight for a home visit from your doctor because you can’t get out of bed, only to be told he doesn’t do home visits for minor things (it was a minor, unrelated to the CFS problem I wanted to see him about) and I should just put the extra effort in to see the specialist he referred me to in a city an hour’s drive away; it’s big things like that, but it’s also little things. It means not being inherently unattractive, it means not being a burden, not having to ask for help with everyday things all the time and knowing only people who already love you will put up with living with you. It means not being looked at with fear, as a scary It Really Could Happen To Anyone story. It means not being looked at as a condition, or a wheelchair or a walking stick, but as a person.

I see it everywhere, in little things, and they hurt hurt hurt. I suck it up and let it go, refuse to dwell on it, but that doesn’t mean it doesn’t hurt. Things like an episode of Friends where Monica has a cold and is trying to deny it, and she and Chandler talk about how they couldn’t have sex with a sick person, sick people are gross, only healthy people are attractive. Things like a band’s message to their fans being “Go outside! Enjoy the sunshine!” and/or “Come to the shows!” I would dearly love to do both, but sunlight hurts my eyes so much I have to keep my curtains closed; I’m bedbound, going outside takes a lot of energy and wipes me out afterward; and don’t even talk to me about concerts. Let me tell you what is not, in any way, fun: being wheeled out to an ambulance just as the band you went there to see is playing your favourite song. Collapsing the day of a show and putting all your effort into staying on your feet that night because you’re not going to miss this one for the world. Buying tickets and then having a relapse before the concert and knowing there’s no way you could make it. That is not fun. That is my experience with concerts.

The world wasn’t constructed for the likes of me. Public places are more likely to have wheelchair access these days, but not everywhere does, and looking for a flat involves compromise; I’m lucky in that the wheelchair is a mobility aid, I can walk (not very far, with a walking stick and some extra help) without it, so my options immediately widen there. Most houses are not built for wheelchair users; I’ve been in one that was renovated after a previous owner had an accident and was left wheelchair-bound, and the shower was the most spacious I have ever been in. Years ago, I had to try and maneouvre through a busy shopping centre, on a Saturday, the week Elton John’s Candle In the Wind came out, pushing my mother in a wheelchair through Virgin Megastore (which was sold out of CD copies of that single, so we had to buy a tape), and I had never had to fight so hard to get through a crowd. (That was before I became ill myself, and now every time I am in a crowd it’s a fight, with or without the wheelchair.)

If you’re not in a wheelchair, you can be independent. I don’t have the strength to push my own wheels, nor do I have the concentration and co-ordination to steer an electric wheelchair, so if I want to go anywhere (when I have the energy to do so and it doesn’t involve a car) it has to be at a time my carer can take me, and a place my carer is okay with going to. I’m not willing to cause discomfort to someone else just because I want to go to a particular place they do not wish to be, because I try not to be a jackass. I either don’t go there or find someone who is willing to take me.

Having healthy privilege means not needing a carer. It means being able to live on your own and take care of yourself; I’ve done that before, and I got by and did okay for a while, but when it takes all of my energy in a day just to sit up sometimes, and shower every few days, and type for a time, and eat, and do nothing else and still get drained, that means nobody is cooking, nobody is cleaning, nobody is answering the phone, nobody is feeding any pets or cleaning up after them, nobody is answering the door, and that doesn’t happen just one day, it happens every day. I have my hands full taking care of myself, I can’t take care of a flat and daily life as well, but the world demands that I do, and it’s exhausting. If my carer minds when I can’t do housework, if anything happens to my carer, I am screwed. And then I’m meant to just be grateful I’m allowed near the healthy at all on top of all that; it’s their world but they’re very graciously letting me stay there too, and you (general healthy you) may not think you’re giving off an air of that, but you are. Because it’s true that it’s your world, you built it to be, but I have every right to be here and interact with you. And yet I don’t get that feeling from the majority, I don’t get that from society. I’m supposed to be healthy. I’m not healthy. I have a chronic, disabling illness that there’s no cure for, that was only recognised by the Chief Medical Officer of Great Britain as an illness a few years ago, and that no treatment has yet arisen for that guarantees lasting improvement of symptoms for every sufferer. There are a lot that help many people, but it takes a hell of a lot of trial and error before you find one that works for you, and so far all the ones I have tried that gave me a huge improvement didn’t last longer than a few months. I have been dismissed by doctors, told I’m just academically jealous of my brother (which I’m not, and would have no relation to being exhausted in the first place), told that it’s all in my head, that I should just snap out of it, that I’m putting it on for attention, that I look fine if a bit pale and if I just did some exercise I’d feel better, that I can’t possibly wake up more exhausted than I was when I went to sleep, that any other health issues that arise are “just part of the CFS” and handwaved away (this happened to my mother when the cancer returned, she was so used to having everything attributed to the CFS that she didn’t get it checked out in time), and on the flip side, my doctor was shocked when I saw him last and told him how bad things have been, and despite him having seen me for years struggling with the CFS, his only answer was “But you’re only twenty-four!”

I’m tired of it. The only place I’ve been able to make friends without pity, without that barrier there of “oh my god you’re young and little and cute, your life shouldn’t be like this!” is online. When all people see is lines of text, they’re seeing what spills out of my brain through the keyboard onto the screen. It’s a relief, to have text be my interaction with new people, until they’re used to me and my enthusiasm and tendency to babble and quote geeky things and ramble and make wild connections that don’t seem to make as much sense outside of my brain. Because who I am is this little bundle of smiles and enthusiasm, and that seems to come across in online interactions. But meet me in person first and you won’t see an exuberant, loving, enthusiastic whirlwind of glee. You will see a short and exhausted woman, possibly in bed if you’re a friend of my boyfriend coming over to see him and say hi to me; or you will see a wheelchair with a person in it, or a tiny young woman with a walking stick. And you will be glad it’s not you who’s stuck in bed, or in a wheelchair, or needing a walking stick, because that’s human nature and you should be glad. It’s good to be healthy. I miss being healthy and able to dance and have dreams for your life that don’t amount to “I want to have an entire year where I’m not in pain all the time”. Holy shit, what a dream. That’s one of my far-fetched dreams, on a par with my childhood one of wanting to be a professional actress. God, an entire year. A whole year without pain. I don’t even know if that could happen, the most I’ve managed is four months in the last ten years. When I think about how most people get to live their lives without feeling like their muscles are on fire or just aching so much you can hardly see straight, when I think about those people, my heart soars. I wish everyone could have that, because it’s beautiful. People get to see a band’s tour several nights in a row, and have full-time jobs, and clean their apartment, and read books whenever they want, and drive without the constant danger of concentration flatlines, people get to have energy and that’s amazing and makes me happy like you wouldn’t believe. I can’t do any of those things, but other people can, and I am so happy for them the words “happy for them” don’t cover it.

I still wish I could do those things. It still gets to me sometimes that I can’t. It still bothers me when everyone around me uses Healthy Person Logic and applies it to me and my life, because it works in their life and it’s just, to a healthy person, how the world works. Of course you can take a moment to tap on a wall, or leave a comment, or reply to an email, or send a text when you’re thinking of a person. Of course you can sort out the paperwork yourself, remember instructions, think of something to say on the spot, stay up half the night to talk when you want to, pick up the phone and speak. Of course you can empty the bins when you’re exhausted, clean up your room, go to another city, keep this appointment, walk to this place it’s not far.

Go back and read the spoon theory. What takes a moment and a tiny amount of effort for you takes a whole lot more for me. And it doesn’t stop, it never stops. I don’t get a break from this. When you get sick, and you feel crappy and people expect you to function normally and you can’t and you’re grumpy and you feel awful, you know you’ll get better, and you get treated or wait the cold out and then you feel okay again. I don’t get to do that, I don’t get to know that. From the typical pattern of this illness, given that I’ve had it for a decade and I’m in the 25% of sufferers who are bedbound with it, and have been so on and off for nine of those ten years, it is very unlikely that I will ever get a break from this. That’s not to say I couldn’t see vast improvements, maybe even lasting ones. But even if I improve to the point where I can have a normal life, I will have to fight not to get ill again. Healthy people don’t have to fight for every ounce of energy they have. And that comes across, all the time, when you have no idea it does. And all I want from you, those with healthy privilege, is to see and acknowledge that there are disabled people in this world, and you can’t expect them to be able to do everything you can do at the drop of a hat. Don’t come upon the words “I can’t come out tonight” and hear “I don’t want to come out with you”. Hear what is being said, which is “I don’t have the energy to do all of the activity needed to come out tonight”. If a doctor is told by a patient that they are bedbound and need a home visit, I would like that doctor to hear “I am bedbound and wish to be cooperative and get treatment; I am asking you for help” instead of “I just need to be encouraged to make the requisite effort”. If you go to a friend’s house and their sister’s friend, who has CFS, is lying exhausted on the couch and declines the offer of joining everyone else on a walk, please try to hear what is being said, “I am ill and exhausted, but appreciate being included in the offer”, rather than hearing “I’m too lazy to go for a walk, I’d rather lie here”.

And please, don’t make jokes to me about “Chronic Fatigue Syndrome? Ahh, you’re just being lazy.” You may mean it as a joke, and say it with a wink and a grin, and know it’s not true, but I have had to face so many people who were being serious when they said that. It’s not funny when you joke about it. It’s even less funny when you’re serious about it. I may look fine, but I am exhausted and in a lot of pain and can’t think well because of the mental fog, and you come along and tell me I don’t feel any of that because, when I’m in enough of a good swing that I don’t need the mobility aids and can walk without them, I have no outward signs of being ill, so I must be faking. For crying out loud, why would I fake this? I wanted to be an actress. I wanted to dance. I wanted to be Fred Astaire when I grew up, not Lord Chatterly. There is nothing I would like more than to have the energy to exercise, to get sunshine, to play basketball, to take up ballet again, to learn languages and actually remember them (I have a hard time remembering and processing English, let alone other languages I’m not hearing 24/7), to have a job. I have a list as long as your arm of jobs I would happily do, careers I could flourish in. I wanted to do a PhD, I know I’m good enough for it. But I only have four GCSEs and one AS Level, because I had to leave school at fourteen and spent the next four years gathering qualifications slowly at community college. So don’t call me lazy, jokingly or otherwise. I’m fighting hard just to stay afloat. It would be nice if I didn’t have to defend that.

This post has been brewing for ten years. It’s been a long fight, but finally the medical profession is starting to see CFS/M.E. as a real neurological disease. And I am not, in point of fact, as upset as this all makes me seem; I’m pretty mellow about the whole thing. Sure, I get momentarily hurt, I have to bury my head in my hands when it’s assumed the entire audience for a thing is able-bodied, and I have to deal with some people being assholes to me sometimes because they either don’t get it or just plain don’t want to be around it, or both. But hey, everything else in my life is made entirely of awesome, so I can’t complain. (Note: this post is not meant to be read as complaining; I do not mean it as complaining, but am aware it could come off as such. I am merely pointing out experiences I have had, stating that they upset me, and moving on.)

Happy Blogging Against Disablism day, and welcome to M.E. Awareness Month. I’m hoping to blog some more about CFS/M.E. this month, but it’s an illness of ups and downs and I’m rather in the downs at present so we shall see how it goes.

15 Comments »

  1. I don’t know what to say.

    (And, trust me, that’s NOT something which happens very often.)

    Non-disabled people should be forced to read this and be given a comprehension test afterwards. And they should KEEP ON being given comprehension tests afterwards until such time they have read it PROPERLY, and understood it, and been able to demonstrate at least some glimmer of understanding.

    Comment by Lady Bracknell's Editor — May 2, 2008 @ 10:07 am | Reply

  2. Your post definitely doesn’t read as complaining, as you fear. It raises awareness and educates. It must be difficult to deal with people who don’t take your illness seriously. I’ve had similar issues. Very wise and well written.

    Comment by fridawrites — May 2, 2008 @ 7:58 pm | Reply

  3. Thank you.

    Comment by WTTO — May 2, 2008 @ 9:39 pm | Reply

  4. This is one of those rare posts you want to put on very large billboards, give out in the street, wear quotes from on T-shirts. Or link to and keep the link very much alive.

    Comment by seahorse — May 2, 2008 @ 9:47 pm | Reply

  5. Thank you so much for writing all this out. As a fellow relentlessly cheerful person with an exponentially less restrictive crappy disease, I only have a tiny idea of what it cost you to do so. I’m so glad you did, though.

    Also, I love this line:

    “I wanted to be Fred Astaire when I grew up, not Lord Chatterly.”

    Nicely put. :)

    Comment by Sara — May 3, 2008 @ 10:57 am | Reply

  6. Wow. This is such a brilliant post, thank you.

    Comment by Anwen — May 3, 2008 @ 7:35 pm | Reply

  7. Wow. A doctor who makes home visits? I don’t think that even exists here in America anymore.

    I emphasize with you, I can relate to a lot of this post. I have a progressive disease that doesn’t even have a name, thus there’s no cure or even a prognosis. I’m in a chair all the time now, but I used to walk with a cane. It was a lot easier, although it was harder in some ways too. I don’t think I’d even care that much that I had a disability if I were just treated equally. That’s the worst part.

    I don’t have the strength to push my own wheels, nor do I have the concentration and co-ordination to steer an electric wheelchair, so if I want to go anywhere (when I have the energy to do so and it doesn’t involve a car) it has to be at a time my carer can take me, and a place my carer is okay with going to.

    I was in this same predicament myself, although I could steer an electric if I wanted to and have the concentration for it. I just didn’t want to, because I didn’t want my arms wasting away with inactivity. That, and they’re too heavy to put in a car. I got power-assist wheels and it changed my life. I can go out independently now. It’s just like using a manual wheelchair, but when you push on the wheel rims, you get propelled forward (or backward, or stop). You can set the power to whatever you’re comfortable with, either low assistance or so much all you need to do is touch the wheel to make it go zoom. It sounds like this could work for you. You just replace your manual wheelchair wheels with these, and you can change them back if you want easily. The chair also remains light enough to put into a car, unlike a regular power chair. It’s pretty awesome.

    The wheels are called emotion and I got them here. They’re German made, they’re also available in the UK. If you ask a local shop about “power-assist wheels” they might know where you can try them out. Mine were paid for by my medical assistance. If you haven’t, give them a try! You’re too young and cool to be stuck at home.

    Comment by The Angry Gimp — May 4, 2008 @ 3:16 pm | Reply

  8. hi. thank you so much for this post. it must have cost you a whole bunch of spoons to write it.

    i have cfids too. i can’t bear the name “chronic fatigue syndrome” (the most-used name in the U.S., i think). it makes too many people say “hey, i’m tired too!” so i either say “CFIDS” or “CFS — it stands for Chronic Flu Syndrome.” a slightly better soundbyte, at least.

    cheers to you. this post made my night. so well said, and so useful. and being linky’ed all over the place. :)

    Comment by colorwheel — May 8, 2008 @ 6:24 am | Reply

  9. Hi there! I’m here via seeksadventure over on LJ.

    I don’t have any disabilities which primarily effect my body. However, I have clinical depression, dysthymia, generalized anxiety disorder and post-traumatic stress disorder, and when I have an episode I am often exhausted, dissociating and sometimes in physical pain. Yet healthy society expects me to be able to just keep on working right through it. This is why I hid my illness for years instead of being out about it, which I am now.

    In other words: our disabilities are very different, and mine often comes with the (albeit questionable) privilege of being easily hid. But I agree with everything you’ve posted here, and I think this is one of the best posts I have ever read on ablism.

    Comment by JoSelle — May 11, 2008 @ 9:58 pm | Reply

  10. I’m here via seeksadventure, too. Thank you for sharing and making me consider some things that had never crossed my mind.

    Comment by Rebecca — May 12, 2008 @ 2:58 am | Reply

  11. Brilliant post about the difficulties of living with M.E. and the notion that if we (as PWME)just tried a bit harder we could do better (what I wrote about). It may have been 10 years in the brewing but better out than in and God only knows the frustration and rage we all feel with this wretched condition.

    There’s so much here that chimes with my own experience, even though I’m now fortunate enough to at least not have to spend all my time in bed. Having said that, I tried to explain to a close friend the other day that I cannot remember what it feels like to be well or to wake up and feel able to seize the day. They just couldn’t connect at all but its just been too long to have any understanding of what it must feel like to be healthy.

    I shall add your blog to my own blog roll.

    Thanks for writing down what so many feel. Bless you

    Comment by cusp — May 14, 2008 @ 11:01 pm | Reply

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