sarasvati: A white lotus flower floating on water. (Default)
Through [personal profile] torachan, I came across this post by [personal profile] kaz, on the subject of disability and the curing of disability and how that relates to identity.

Reading it helped to give form to a lot of thoughts that I've been struggling to deal with for a while now.

I don't consider myself disabled. I consider myself challenged. I have problems, mental and physical that require some readjustments to my life, and even though they may make things difficult for me, they do not directly prevent me from doing anything. I can't, in all good conscience, consider them disabling, as I feel that comparing my problems with, say, the problems of somebody who requires a wheelchair to get around or who suffers from chronic pain is just doing them a disservice. Thus, I call my problems my challenges rather than my disabilities.

Moving on...

I've spoken to people, friends and family, about these problems before, and nearly always, the topic comes around to how they can be fixed. Losing weight to hep me breathe and sleep better, which will possibly take away pain and comprehension issues. Wouldn't it be great if there was some sort of quick fix to my problems?

The thing is, I'm not sure it would be so great. And I feel like a terrible person for thinking so. I feel that by not being enthusiastic about wanting to be rid of any issues I may have, I'm a bad person for clinging to them, like I'm somebody who wants problems just so that I can have something to complain about. If I don't want to be perfectly healthy in all ways and forms, then I'm malingering, I'm trying to be special, I'm just looking for sympathy and attention.

That feeling is worse sometimes than anything that my issues make me go through.

I'm not 100% sure that if some miracle cure was offered to me, something that could fix my lungs and heart and my eyes and my brain and all the senses connected to it, I'm not sure I'd take it. And people treat you like you're stupid and attention-whoring for it, but here's the thing: my problems are a part of me. I may struggle with them, but for the most part, they're a part of my life and I've learned to deal with most of them enough that I can lead a pretty normal life without having to resort to some drastic miracle cure thing.

I've worn glasses all of my life. I can't comprehend what it's like to see clearly without something to help. I take my glasses off at night, and in the morning I put them back on. It's part of my routine, it's something I've adjusted to just fine, and it's a hassle some people wouldn't want to deal with, but to me, putting on my glasses is no different than pouring myself a cup of water.

One night, a long time ago, something wonky happened that I can't explain. My glasses were off as I was about to go to bed, and so the world had returned to its mass of fuzzy blobs and blurs of pseudo-colour. Then I looked at the clock on the bedside table, one that was 6 feet away from me, and I could see the display clearly. No blurriness around the lights making up the numbers, nothing of the sort. Something that shouldn't be able to happen.

I panicked. I felt my face for my glasses to confirm that they were off, multiple times. I looked around the room at other things to see if they were blurry too, and how blurry they were. My eyesight had, for a brief period, seemed to recovera significant amount, and it scared me. Not because I love having to wear glasses and think they make me special, but because seeing anything clearly when my glasses weren't on my face was not something I did!

Imagine someone who's badly agorophobic and stays inside all day, working from home and paying the bills and doing all that everyday stuff that people do. Now imagine one day this person feels absolutely no fear at going outside. They're not about to burst into song and go gallivanting around the local nature park, no matter what happy-go-lucky media portrayals would like you to believe. They're going to sit inside and stare at the outside and wonder why this is happened now, all of a sudden, and what it means, and how they're going to cope with it because it's not normal for them.

Just the same sort of reaction somebody might have if they had never exhibited a fear of the outdoors and then suddenly found themselves unable to leave the house one morning.

Long-term problems mean readjustments, shifting things in life so that life can go on in spite of the problems that exist. Having those problems suddenly lifted requires as much adjustment as suddenly having those problems descend upon you. Your life needs restructuring again. The identity that you built for yourself around your problems (the things you deal with every day, remember, and so are no more weird to incorporate into an identity than enjoying going for a run every morning or knowing you like to drink coffee) suddenly doesn't apply, and you need to re-examine yourself and form a new identity around your lack of problems.

And people expect you to be grateful for this. Sure, you may be able to get up and walk to the corner store instead of using a wheelchair, or you may now be able to digest food indescrimately instead of having to have a specialized diet, but there are still changes that need adjusting to, and aspects of your old life are going to creep back in. How many times have new amputees tried to use the limb that's no longer there? How many ex-amputees who had arms grown back by medical science (or some such thing) leave that limb unused or favoured for the very same reasons?

Your life still changes, no matter what the cause of change is. It's hard to deal with. Change is hard for everybody, whether abled or challenged or disabled. Expecting people to be happy about a major life adjustment is selfish. You're asking them to be happy that they have to struggle to restructure themselves because they're not longer an awkward inconvenience, they're "normal again."

Identity is also about how people see you as much as how you see yourself. It blows if people see you as "the disabled one" and treat you like crap for it, but at some point, the disability becomes a part of your identity. Losing it means you lose a piece of yourself.

I have a character that I RP with Rei sometimes. This character is blind, has been so almost from birth. He's happy. He's well-adjusted, loves his life, is in a loving and caring relationship. Rei once suggested that it would be awesome to come up with some way for Nathaniel to get his sight back, and then seemed annoyed and confused that I wasn't all for it. Nathaniel doesn't want his sight back. He's happy being blind. His life works well around it. It's a part of him, and he's okay with that. The thought of having to learn to rely on a sense he doesn't even remember ever having scares him quite a lot, because it's so alien to him. But in Rei's mind, it was a problem to be solved, an obstacle to be overcome.

It had been. Just not in the way that Rei, and a lot of other people, expect.

I think this mentality is at the heart of all the "fat wank," too. People who have been overweight for their entire lives have formed an identity for themselves that incorporates being fat. Lately, it's become a lot more acceptible to be proud of who one is, in spite of problems. "Accept me for who I am, problems and all, or else you're just being a dick." But the world is still telling them to be different, telling them they have a problem to be solved, telling them that part of their identity needs to go away. It's not too surprising that people get their knickers in a twist over it.

I don't think that enough people see things like this as something that can be part of an identity without connecting that to the thought that people just like to have something to bitch about. They can't see something not of the norm and think that it doesn't need fixing. "That poor girl needs a cane to walk," thinks the woman who doesn't even think about the glasses on her own face. "Her life must be so dreadful to have such problems. She'd be happier if she was normal."

What about my identity has been built around my problems? Let's take a tally of just some of them, shall we? I won't mention my reasons for them. I'll just list the adjustments I make, which have become itegral parts of myself.

1. I don't go outside on very cold and dry winter days unless I have to.
2. I don't drink coffee or energy drinks. I allow myself a cola if I'm at a restaurant. I allow myself tea at home.
3. I don't eat spicy foods because they don't agree with me. I also don't eat potato chips late at night, and am careful not to eat anything in the morning until I've fully woken up.
4. I prefer communicating online to talking face-to-face.
5. I watch movies and TV shows with the subtitles turned on.
6. I drink a variety of herbal teas.
7. I need to save a certain amount of money each month, which varies depending on what kind of job I have at the time.
8. I try to take a short walk every day, but sometimes I stay indoors instead.

Oh noes, such terrible things I have to do for myself! If I just posted that list of things I have to do in my life, people would wonder what point I'm trying to make, and act like it's no big deal. Why even mention it? But tell them that it's because of health or emotional problems, and the tone changes, and that list becomes a sinister one, listing all the restrictions I have to make and detailing, subtly, all the things I can't do because of my problems.

1. I don't go out much when it's cold and dry because my lungs spasm and I wheeze and cough and have to fight for breath.
2. I limit my caffeine intake because I've found that it's a trigger for my heart spasms that make it, for a few seconds, sometimes beat as fast as 200 beats per minute.
3. Those diet restrictions are because I have some sort of digestive disorder that requires unpleasant trips to the bathroom as well as pain.
4. Social anxiety, sensory problems primarily relating to hearing and speaking, shyness, awkwardness around people seeing my Tourette's make my twitchy, and trouble making eye contact makes me prefer distance communication to the other kind.
5. Hearing comprehension problems mean that turning subtitles on makes the movie easier to understand.
6. I've found some herbal teas that can treat a lot of my problems, from chronic sinus congestion to the pain and problems associated with that digestive disorder. They're a damn sight cheaper than meds, and sometimes more effective!
7. Money gets put aside so I can afford the meds I need to take. The amount varies depending on whether my job gives me health insurence.
8. I walk to try to get exercise for my lungs and heart and to lose a little weight, but sometimes the pain from my infected ingrown toenail, or perhaps bad weather that my lungs can't handle, means I stay in sometimes.

There are other, more obvious adjustments made for my health. The infected toenail was so painful for a while that walking anywhere required a cane for balance. I need to carry my asthma meds in my pocket, just in case. It doesn't escape anyone's notice that I'm overweight or that I wear glasses. Sometimes I have panic attacks.

But I am me. My challenges are a part of me, whether you like or not, whether it's convenient for you or not. I am not looking for a "quick fix" to being myself. I am not looking to have to reorder some parts of my life, and some parts wouldn't get reordered anyway. I like the taste of those herbal teas. I don't want to go out when the air's cold and dry anyway. Spicy food burns my tongue. Walking's an enjoyable activity that I like to do. Even if I didn't have Tourette's or social anxiety or autism-like symptoms, I'm still shy and prefer keeping my own company, so I wouldn't go out and become a party animal.

That isn't to say that I wouldn't be glad to be rid of some problems. I'd love to not be in pain. I'd love to be able to be broke without wondering how long I can go without meds before my lips start to turn funny colours. It isn't all positive stuff that comes along with my problems, or they wouldn't be problems.

But it's not all so terrible. It's not all something that's waiting for a quick fix. Not all bald men have hair transplants or wear wigs. Not all people with bad eyesight get corrective laser surgery. Nobody thinks badly of them for those choices, even if it would "fix their problems." So in that vein, nobody should look down upon the blind man who's content with being blind, or the woman with Celiac disease who doesn't suffer any for having to eat a gluten-free diet.

Or the person smiling as they limp down the street leaning on their cane, laughing at a joke their deaf friend just signed to them.

I wonder, if people looked closer, how many people they'd see with problems. People they know, whom they see every day, and of whom they never would have guessed suffered from anything at all, because they're so used to making all the little adjustments that allow them to live normally anyway.


sarasvati: A white lotus flower floating on water. (Default)

August 2011

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