Daily Archives: 14 December, 2009

Recommended Reading for December 14

Wheelie Catholic: Imagine no one has to imagine

One of the other questions I’ve been asked is “What’s it like to be a quadriplegic?” usually followed by “I can’t imagine!”

My answer to that is no, you probably can’t imagine, although you may try , with the misguided help of maudlin movies about disability, on the one hand, or inspirational tales of people climbing mountains, on the other. You’ll read stories about quads who want to die and stories about quads who help others find better ways to live. You may tap into societal myths and assumptions about disability, through no fault of your own because we are surrounded by them. You may base your ideas on the few disabled people you’ve met and generalize from there how it is to live with a disability. And, sadly, you may avoid being around disabled people because you are so worried that you’ll say or do the wrong thing as you try to imagine what it’s like for them.

To all that I say – please, don’t imagine what it’s like.

LaToya Peterson at Racialicious: Why is it so important to have productive conversations on race?

Conversations about race are not amusing at all when the people who you are discussing the issue with make it clear that (1) they have not thought about the issue much, (2) they don’t care to think about the issue much, but (3) they are determined to talk about the issue anyway. And, as some of you may know, I was recently confronted with this situation over at Jezebel. […]

Writing about race in mainstream spaces can often be frustrating and it can often be rewarding, just as many of you know from doing the same thing in your daily personal interactions. And while we are all encouraged when we have a breakthrough by talking to others and expanding upon or ideas, it is also important to remember that this must be done in a sustainable way. I have seen too many people with amazing ideas and wonderful perspectives become burnt out and disengaged because they felt they could reach everyone, every time, at every occasion. But as these structures were not built in a day, and not upheld by one person, the process to dismantling them will also be a long, hard road.

A Femanist View: Heads-up for Feb.

On the Paul O’Grady show today, professional dancer Brian Fortuna from the BBC’s Strictly Come Dancing (the US version is called Dancing with the Stars) announced a new show called Dancing on Wheels.

Knowledge Ecology International : Writers Open Letter in Support of WIPO treaty for People who are Blind or have other Disabilities [via BoingBoing]

The undersigned, writers and journalists, are writing to ask you to support the World Blind Union proposal and initiate discussions at the World Intellectual Property Organization on a treaty to improve access to works, articles, blog posts, subtitled films, etc in formats accessible to people who are blind, visually impaired or have other disabilities that impair access.

New York Times: Poor Children Likelier to Get Antipsychotics

Some experts say they are stunned by the disparity in prescribing patterns. But others say it reinforces previous indications, and their own experience, that children with diagnoses of mental or emotional problems in low-income families are more likely to be given drugs than receive family counseling or psychotherapy.

Part of the reason is insurance reimbursements, as Medicaid often pays much less for counseling and therapy than private insurers do.

Nashville Scene: Even after a sex-abuse scandal, NHC Bristol nursing home employees still don’t know how to handle abuse allegations

Last August, after a staffer was charged with molesting elderly patients—some of whom were too ill or frail to plead for help—at a Bristol, Va., nursing home run by Murfreesboro-based National Healthcare Corp., whistleblowers hoped that the ensuing attention would create an inhospitable climate for serial predators.

Instead, an October survey of the nursing home’s staff obtained by the Scene—prompted in part by a sexual-abuse complaint lodged in September—found that most of its employees don’t even know they are required by law to report abuse allegations to the state. […]

NHC Bristol may serve as an extreme example of just how bad a nursing home can be. The allegation of sexual abuse wasn’t the only complaint that prompted the survey in October. According to Brenda Bagley, supervisor of the complaint unit for the Office of Licensure and Certification at the Virginia Department of Health, the nursing home had been reported for a “general lack of care.”

Inertia

Asking for help is something I have never been good at. It’s rather like standing in front of a car hurdling toward you, intending to push it in the opposite direction. It requires an enormous amount of resistance. And I’m almost certain to come away with some sort of injury.

Lying in bed the other night, I had a realization. I seem to have two modes of being: at rest, sitting or leaning or lying in one place, unmoving, still; or in motion, pushing, moving, rushing, doing, working, over-working. And it is very, very difficult for me to move from one state to another. It is not as easy as just get up and go or sit down and stop. It would be expected, with my disabilities, that I would have trouble getting up from a state of rest to start doing, but wouldn’t you think it would be easy to just stop myself from doing and rest?

But it’s not. I find it very, very difficult to stop moving, working, doing when I am already doing it. Very difficult. In fact, I actually have to work at stopping working. It’s like once the do switch is on in my brain, turning it off is about as easy as pushing that hurdling car. I get to a point where I don’t even notice that I am doing; my consciousness turns off and I am pushing forward on autopilot, working from habit, memorized routines, just going and going — and my awareness has been switched off, perhaps as a way to avoid feeling the pain?, but that means I don’t know when it’s time to stop. I don’t know when I’ve reached the critical point, when I’ve done too much, when I cannot do any more — often, I don’t know until my body just stops doing and I am confused inside it, trying to make it move and being denied, and it takes time for my consciousness to boot back up, to kick on and make me realize oh — I need to stop.

It has come to a point where I’ve learned that I need to stop before it feels like I need to stop, because my body and brain simply do not have the ability to sound the alarm for me. Even when my body can’t keep going anymore, no matter how much I push it, it still doesn’t feel like I can’t keep going anymore.

So I’ve been teaching myself, over the years, to force an override at a certain point — not based on what I’m feeling at the moment, but based on predetermined amounts of time/work that I believe is what I can handle on the balance. It’s hard, because I’m so stuck in that inertia of doing that I often don’t even remember to keep track of the amount of time/work that has passed, so I might forget for some time after I’ve reached that point, and then try to abort belatedly.

Either way, even when I’m “being good” and recognizing when that predetermined point has come, the act of overriding my natural inertia — my natural tendency to keep moving — is not as easy as flipping a switch. I actually have to go through a process of convincing myself that yes, it is time to stop, and yes, I really should stop, no, I should not keep going, and yes, it is okay to stop, really, it’s okay, and yes, I need it — and so on (and on, and on, and on). And then even if I am convinced, I have to try to push in the opposite direction of my body pushing to go and do. And pushing your body to stop pushing is about as technically-impossible as it sounds.

Now, convincing myself just that I should stop doing is a difficult enough thing to do. But add in a sense of pride… and a sense of guilt… and suddenly convincing myself that I should do (or stop doing) something doesn’t seem like such a hard thing in comparison.

***

I am one of two clerks working on our program at my office. Last week, for three days, my partner clerk was not there — it was just me running the show. And I happen to think that I am knowledgeable and capable enough to do a pretty good job of it. The problem is that we are severely short-staffed — the two of us in our corner of the building are already balancing a workload that should require four or five clerks. So when one of the two is gone, well, things move from chaos to crisis, so to speak.

I have an amazing supervisor. I absolutely adore her. And she was keeping an eye out for me. She kept coming back and asking if there was anything she could help with.

And for that first day, I kept saying no. And I thought it was legitimate! One of the main assignments is something she is not supposed to do at all, and another couple are things that I just thought would be more complicated to have someone else do than to do myself. So I said no.

And then my husband poked a little bit of fun at me — he works at the same office — saying that my supervisor had been talking with him (casually) and mentioned that she kept trying to offer help, and I kept refusing. And they shared a laugh, and he said yeah, that sounds like her. She’s not very good about asking for help when she needs it.

And I needed it. I just couldn’t convince myself inside that I needed it, that it would help, that it would be OK to ask, and so forth. I was already so overwhelmed and using so much energy, and I watched that car hurtling toward me and knew I did not have the strength required to push it the other way. Not on top of everything else I was doing. I did not have the capacity to make myself ask.

Because I’m not supposed to ask for help. That means admitting I can’t do my job. It means admitting my disability does make me less capable than other people. It means admitting my disability does exist and does affect me. And I’m not supposed to ask for help, because other people can’t spend their time and energy doing something for my sake. It’s not fair to them. I don’t deserve that, to have anyone other than me devote a single second to me. Other people would deserve that, but I am not deserving. If I ask for help, I am telling that person “I am worthless. Useless. I can’t do anything right.”

Asking for help means sending the message to the people around me that I am actually not as good a worker (as good a person) as I keep insisting to them that I am. That actually, I am inept and incapable. That I can’t do anything right, that I do mess things up.

Asking for help is asking for special treatment. Asking for help is asking other people to pretend like I deserve the same consideration as everyone else, and deserve to be considered just as capable as everyone else, while also demanding that they treat me differently, do special things for me that no one else gets to have done. Everyone else has to stand on their own, and here I am demanding that all these people prop me up and say that it’s just the same as that person over there standing on their own.

Every single time I need help, I have to fight these thoughts. Even if I don’t actually think them consciously. Every single time I need help I have to take time and energy to refute all of these thoughts to myself. I have to take time and energy to prove all those thoughts wrong. And that takes quite a lot of energy.

So I don’t ask. Even when I need it. Even when I know I need it. And even when I know, intellectually, consciously, that it is OK to ask for help, and that I should ask for help. I still don’t ask.

Because by the time I’m needing help, I’m already at my limits. I certainly don’t have any energy left to deal with that hurtling car.

(Cross-posted at three rivers fog.)

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