Monday, September 6, 2010
The REAL SuperCrip
You want to talk SuperCrip?
Take away the devoted wife and kids whose care allows this wheelchair-bound guy to do his own thing and set up his own foundation and go on TV. Let's see how much he accomplishes without help.
Because for most disabled people, that's how it works. You go it alone. Your spouse runs off with a healthy person leaving you to cope as best you can. Either you didn't have kids because you got sick before you had them, or you had kids but they're too young to be much help when Dad gets tired of playing nursemaid and leaves for a woman who imposes less responsibility on him.
You think it's hard for a healthy woman to juggle work and household chores? Try doing it with a disability! The experts tell you to "delegate chores". How do I do that when no one else lives here? Asking friends for help doesn't mean you're going to get it – they have busy lives, too. My friends all have either full-time jobs or full-time caregiver responsibilities at home ... they barely have time to clean their own houses, much less come over to help me.
The only cleaning agency that actually cleans costs $200 a visit ... I can't afford to pay that much every week! So I muddle through the best I can, trashing my bad back doing things I know I shouldn't, trying to avoid exhausting myself by using pacing, having to make choices whether to stop in the middle to rest or to violate the rules of pacing by pushing through till I'm done. Sometimes the decision is made for me – I get dizzy enough that I have to stop and lie down.
In my mind, the real SuperCrip is the one who never gets noticed because she's quietly struggling through life with no money, no help, and insults flung by people who don't understand that she's not merely lazy or depressed. Some years ago, I got my first abnormal blood test result, but even that didn't appease the critics.
The real SuperCrip is not the one who was able to write a book while someone else did the chores and cooked her dinner. The real SuperCrip is the one who would like to write a book, and thinks about it while she's doing her own chores and cooking her own dinner.
I've been on TV and had my picture in the paper, but not for reasons related to my disability, which was never mentioned. (It was mentioned by me, but not by the journalist who summarized my statements.)
I'd like to do more to publicize CFS/fibro, but if I'm soliciting public appearances, I'm not home doing the chores and earning a living, and I don't have the energy to come home from a speech and do everything that needs doing. Blogging and letter-writing can be done if I have energy left after doing the more important stuff and can be done horizontal, using less of my precious energy resources.
Unfortunately, the picture the world has of SuperCrip isn't the realistic one, the average disabled person who's poor and alone. The pictures they see are the ones the media loves: the husband with the wife who has to do everything for him, even wipe his nose; the wife who wrote a book about living with CFS and tells us how her daughter lovingly cooks organic chicken broth from scratch while her husband carries her from the bed to the bath. Therefore, every woman with CFS has only to lie in bed while nutritious food miraculously appears and her cadre of servants and handmaidens tends to her every need without her needing to move a muscle, reinforcing the stereotype that we're spoiled, petted, lazy women who use a fake illness to manipulate people into doing our chores for us.
The media never show the woman who lives in squalor because she barely manages to rustle up food, without the energy to deal with the cobwebs and dust bunnies the size of elephants and mopping the floor. The woman whose house is a mess because bending over to pick up something she's dropped causes her to pass out. The man who's living in the gutter because his meager disability check wasn't enough to pay rent. We're the real face of disability, the one that's too ugly for the media.
And we're the real SuperCrips because we're doing as much as we can – often more than we should – without help, without recognition, on our own.
Stand up (if you can) and give yourselves a round of applause. Whether the rest of the world ever acknowledges it or not, you deserve a lot of praise for accomplishing as much as you do against insurmountable odds.