Posted in Developmental disability service system, HCBS

The apparent dignity in being a slob, and the terrifying catch-22 on the other end.

When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.

When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.

When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.

When you’re a slob, people think you’re gross but they don’t think you’re incompetent.  They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.

When you’re a slob, people think you make bad choices but they don’t think you’re pathological.

When you’re a slob, people find you sort of relatable as a human being still.

When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.

There are other consequences to being a slob, mind you.  But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard.  And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.

And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.

But seriously.  When you’re a slob, you get to be a human being.  Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.

Because I don’t actually want to live in unsanitary living conditions.  I don’t want to laugh it all off over and over again.  I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function.  These are not situations I have ever wanted.

But I’ve endured them.  Over and over again.  Allowing people to believe what they will.

For so many reasons.

So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.

So people wouldn’t declare me too incompetent to live on my own.

So many reasons.

And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.

Because that’s the fucking flipside, the catch-22 of being a slob.

Is they can just call you a slob when they want to deny you help you need.  Help that may be at the level of survival, like it was for my friend with her infected leg ulcers.  Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing.  That’s not how it happens, people.

But all these things have a catch-22 angle to them.

Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.

Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.

Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.

Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.

There are no right ways to be developmentally disabled around here.

And I’m hearing horror stories.  About people suddenly being pushed to do things on their own they’ve never done before.  And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.

There are no right ways to be developmentally disabled around here.

We aren’t supposed to exist anymore.  We’ve become too inconvenient.  We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient.  So they’re Xing us, one by one.  Or trying.  We need to resist Xing with everyting we’ve got.

For the time being, I'm still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can't frigging help it), and all. And I intend on remaining.
For the time being, I’m still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can’t frigging help it), and all. And I intend on remaining.

Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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