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asleep at mal 9/09
alumiere
Grrr... on judgemental idiots and ableism 
3/17/11 13:43
asleep at mal 9/09
My brain hasn't been working very well lately, but what has been working is pissed off to no end. The mess in Wisconsin, the US Congress, Japan, Haiti, the Middle-East and Africa, and the rest of the news is frequently infuriating, scary, or depressing. But that's not what I want to talk about today.

Instead, let's discuss some assumptions and attitudes that I've run across about me personally and disabled people in general. Because I'm fucking sick and tired of being treated like I'm mentally ill or stupid or lying about being sick and tired. I'm also sick of being broken, but that's another discussion entirely.

In the past few days I've had friends and family members ask me when I'm going to be better or if I'm ever going to get back to normal. I hate the fact that the answer is NO. Even when I'm on the right medications, it doesn't miraculously make the pain stop (or even go down to a tolerable 5-6 out of 10 - I haven't had a 6 since 11/1/10) or my immune system function or my memory suddenly work again. There is no getting well when you have chronic illness and permanent memory loss; I'll never be able to pull up my grandmothers' faces or my great-grandparents' or a lot of my friends' and chosen family's from memory again. I'll never be safe to drive myself, I'll probably never find a full-time job again, nor will I be able to stop taking 40+ pills a day to keep the minimal functionality I have.

And fuck you if you cannot understand how much that hurts, how much I miss being able to take care of myself, drive, think, both shower and leave the house without a nap in between, etc. Think about how frustrating it is that I need a 'personal caretaker' to leave the house (because I can't find my way home when I'm more than a couple of lights away), that I have to read the same book 2 or 3 times before I get what's going on, or that simple tasks for you are major undertakings for me. Seriously - try cooking when your hands are shaking and numb enough that you can't feel them (burns and cuts happen a lot); try going to the grocery store or even eating when the smell of most food makes you want to vomit (hyper- and para- osmia suck); try living with enough pain that you throw up a few times a week because the medication doesn't cut it. Then ask me again when I'm going to be back to normal.

Another friend, a resident in an ER, then posted about things he doesn't like patients to do. And the fourth thing on the list is bring him a printout of what's going on with them, their illness(es), the medication they're on and any allergies, new research about their condition, etc. And seriously - what the fuck? I get that you've gone to medical school, but did that really teach you how to deal with every fucking combination of co-morbid conditions; about every disease and illness on the planet and how to treat it; about what medications I personally am on to control my problems? Is there suddenly a world-wide hospital/doctor/pharmacy database that lets you see all my medical records, an up-to-date summary of the problems I have and the treatments I'm on? Or are you omniscient or telepathic so you can read the parts of my brain that I cannot personally access due to the memory loss? I didn't think so, which means that you should fucking take 5 minutes to read the 2 pages I brought with me because I can't remember it well enough to get it all straight.

And if I've taken the time to do the research and bring you the medical studies on some new treatment for one of my body's problems, perhaps you should take a few more minutes a look at it. Once again, unless you're omniscient I doubt you can know all the new studies going on in the world, and perhaps this new thing will help me if you take the time to look.

And then another friend made a post about how disability is a scam, and I almost lost it. I don't know if he's talking about me specifically, but it really doesn't matter. Things like that show up all the time, from lots of different people. And coupled with "hateful statements about the lives of 'defective' people like me: that we should all be shipped to Siberia to freeze to death, thereby cleaning up the population" it's too much.

I'd love to find a job, to be a healthy and productive member of society, but it's not in the cards because no-one is willing to hire me or make the needed accommodations for me to work there. The programs for finding disabled people jobs are piss poor nationwide, and the 'incentives' don't seem to get employers to give us a chance. Trust me, I've been searching for work for nearly two years now; I'm disabled but there are jobs I could do as long as someone is willing to work with my limitations. I have gotten exactly two interviews, and neither of them went past a first interview. So tell me, who is at fault here? I'm willing to work, I'm searching for work, I'm capable of work, and my disability seems to disqualify me from the get-go. I suppose I could omit it from my application, but as soon as I show up for an interview, it's obvious I walk with a cane and that in and of itself seems to make me undesirable if I don't automatically get ignored because I can't drive. So if you have suggestions on how I can find a job, and they're not just try harder or leave the cane at home or don't ask for the accommodations I'll happily listen. And if you don't then shut the hell up; you're doing me and every other disabled person on the planet a disservice.

I'm sorry if you don't like the things I've said here, if I've offended with my language or attitude, but in all honesty, tough shit. I have to deal with this every day, and trust me, I don't like it one bit. I wish there was a magic wand that would fix me, or that I'd win the lotto (I'd have to play first) so I could afford to fly around the world trying every treatment on the planet until I got better. But since those aren't realistic, it might be nice if you didn't treat me like shit because I'm somewhat broken. There's still a person in here, the same one you were friends with before, and she's not at all happy about the situation, but she's doing her best. How about treating her as the friend she is rather than as less than human?

Thanks.

ETA: The resident responded with an apology. Apparently his comment wasn't directed at well-informed patients, but people who self-diagnose off the internet and then insist that is the problem even when something else entirely is wrong. But once again, his intent wasn't clear in the original post. Sometimes speaking up loudly does make a difference, and maybe make people think twice before generalizing in an uninformed fashion again.

ETA2: This is not directed at anyone specifically - even when people ask me when I'm going to be better (which isn't usually face to face) they mean well. I'm just frustrated and venting. Although if I make it out in public and am feeling good, I'd rather try to forget that I'm fucked up for a few hours. And if you say "Hi, how are you?" and I tell you something's wrong I may want to talk about it, or I may want to talk about something else entirely - if we know each other well enough that I answer fully you should be able to read my expressions and body language and figure out which, and if you can't and I change the subject please drop it.
Comments 
3/17/11 21:44 (UTC)
I work against disability scammers for a living, and there are a lot of them. I wouldn't be too upset with people for thinking that people without obvious disabilities are scammers because frankly by the numbers so many are.

You're one of the people who keeps me from forgetting that not all disabilities are obvious are fit into a nice little category. I've seen you turn away from disability pay when it was available because you wanted to keep working and functioning. I don't doubt you are trying. I'm just sorry you don't have a cure for what ails you.
3/17/11 22:14 (UTC)
That's good to know. Unfortunately, you don't mention that in your post, and the article you share talks about the problems with the disability system including lack of accommodations, so it didn't come through. So it really bothered me, even though that obviously wasn't your intention.

Because I follow multiple people with similar disabilities online, I'm learning to come at this from the perspective of we don't have opportunities. I can't tell you how many other people with Fibromyalgia or Lupus or Epilepsy want jobs but can't find anyone willing to hire them (because I can't remember). And a lot of them lost jobs because their illness made accommodations necessary and their employers (who they were doing a good job for, with the exception that they have special needs) didn't want to bother and weren't required to because they're a small business or the job doesn't require them to make accommodations. Equality and accessibility aren't there for people who aren't fully abled, and the US seems to want us to go away instead of helping us get a job that makes us feel good and pays a living wage.
3/17/11 22:40 (UTC)
The Fed and state governments are the best / highest % employers of the disabled. Sorry my post bothered you. In my case I should know better, but when it comes to Joe Blow I'd be sympathetic to the number of fake disabled they see or perceive, and like the welfare cadillac - however unusual they stick out and taint the entire issue.

When Arlington removed free parking for people with disability tags or placards, they gave out free meter e-tags. The population of working disabled is about 2% on average, but parking around Arlington workplace street metered parking was about 40% "disabled." When they charged everyone, the % of people with tags plummeted. That's thousands of fakers out there that tens to hundreds of thousands saw scamming the system every day.
3/18/11 0:35 (UTC)
"Another friend, a resident in an ER, then posted about things he doesn't like patients to do. And the fourth thing on the list is bring him a printout of what's going on with them, their illness(es), the medication they're on and any allergies, new research about their condition, etc. And seriously - what the fuck"

Dah hell? I always bring a folder of all my previous test results, etc, to my doctors visits (except my primary care, who has them all). They've always thought that was very cool -- or at least told me it was.
3/18/11 0:54 (UTC)
ETA: The resident responded with an apology. Apparently his comment wasn't directed at well-informed patients, but people who self-diagnose off the internet and then insist that is the problem even when something else entirely is wrong. But once again, his intent wasn't clear in the original post. Sometimes speaking up loudly does make a difference, and maybe make people think twice before generalizing in an uninformed fashion again.
3/18/11 0:53 (UTC)
I wish there was something I could do. *hugs* I KNOW you're still here. And YAY, you're still on LJ! There's nothing to be sorry about, it's YOUR LJ page, say everything you want! It's been awhile. Keep writing!! Keep us informed. You know your friends are.
3/18/11 2:25 (UTC)
If he apologized that's cool, but did he change his original post? I've seen doctors who haven't even heard of EDS let alone know what it is. In the ER one time I told the dr that people with EDS have a lidocaine insensitivity (basically it does jack shit), which I found via an article through Andi. He had never heard that before. I know you have tons more to deal with than I do, but if I don't know my disease I don't know if I can trust the dr to know about it off the top of his head. I can only imagine what it's like for you.

PS I hate stupid people. Like ones that absentmindedly make dumb remarks like that.
3/18/11 2:45 (UTC)
I agree with you - which is why I called him on it. He didn't change his original post (most of the time I understand that, and would rather an apology or an addition noting what they got wrong and why). But I also understand what he was going for when it was explained; informed patients like you and I are good to have; people who come into the ER insisting they have for example EDS because they read about it on the web, when in fact they've torn some cartilege in one joint by being stupid and won't listen to him or the other doctors are the problem.
3/18/11 7:11 (UTC)
I don't blame you for being pissed. I hope I haven't said something stupid and inadvertently insulting, I hope that if I did say something careless you would point it out to me.

When I was much younger a friend of my mother's had a stroke. After she recovered enough to go on with her life, she got a handicapped placard to put in her car because she was easily fatigued, and she had short term memory loss. I don't know how often people confronted her or made comments that she could hear about her having a scam going, but it was enough that I heard about it from my mother. So I guess I was exposed to the fact that somebody can be disabled or handicapped without having any visible problems at a young age. In college I had a friend in a wheelchair. I guess it's easy for people to assume that with ramps and elevators and chair lifts on buses things are all peachy for people with disabilities. They've clearly never actually spent any time with any.

When people who ought to know better make comments like that...I don't even know how to respond. I think if I actually called out all my friends that have let some slight or slur slip out, I would have very few left. I am glad you speak out about these things.

3/18/11 7:23 (UTC)
we'd all be better off if more of us remembered how to have a little empathy toward one another. i'm sorry to hear you've crossed paths with so many who've forgotten...
3/18/11 20:47 (UTC)
"...another friend made a post about how disability is a scam..."

That person has almost no compassion and awareness of feelings beyond his own. He needs to learn to walk a mile in others' shoes before forming an opinion.
3/25/11 18:11 (UTC)
Oh humans. Sometimes when we mean well, we say dumb shit. I'd be willing to bet that most folks who say teh dumb think about it later & regret it. But the shipping of to Siberia thing is both outrageous & exceedingly unAmerican. FUCK THAT NOISE.

I'm glad you have become a crusader for yourself, Ms. Alumiere. Too many times people make assumptions, & you've always been feisty & brave, but since you have gotten sick, you have really been challenging a lot of different assumptions, both about illness, & its perception/people's assumptions, & I've been very reflective about your posts about rape culture/feminism. I am sorry like all hell that your life won't be the same as before; that's huge. But your refusal to just throw your hands up, your desire to keep living, & speaking some truth to power, is damned inspiring.

Keep on, keeping on.