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9:33pm August 12, 2014

lichgem:

youneedacat:

lichgem:

I wish there was some kind of list of “best places to live if you’re disabled” with examples of how the places in question can help and accommodate disabled people, and how likely they are to actually follow their own laws with regards to disability rights.

I tried to do a search a while back but everything turned up “places with the most services.” Services doesn’t mean shit. Where I live now has plenty of services and they are brutally ableist and that’s why I’m leaving.

(Also, it was always by parents of disabled people looking for services.)

Yeah and services really depends on what kind of services.

Mental health services are shit pretty much everywhere.

Physical disability and developmental disability services are shit in some places and amazing in others, and in others can vary from amazing to shit in the same place depending on all kinds of factors.

Sometimes “services” means institutions, and sometimes it means community institutionalization, and sometimes it means actual community-based services aimed at helping people function wherever they want to live.

I don’t understand why it seems that the last kind don’t exist for mentally ill people ANYWHERE that I’ve ever heard of.

That’s a huge problem for me. I wish I didn’t occupy this invisible niche. I don’t think I could ever be considered developmentally disabled or physically disabled but I need the same things other disabled people do. Mental illness seems to be in this weird zone on its own, in people’s minds. I can’t articulate things right now, I’m hungry and that’s making me tired and bad at thinking.

The thing is – lots of mentally ill people need exactly what you need, what most disabled people need:  Help doing the things their illness makes it impossible for them to do.

Depressed people who can’t make it out of bed, let alone do stuff around the house.

Schizophrenic people dealing with severe negative symptoms that keep them from being able to take care of themselves, at all, no matter how much they want to.

Manic people who can’t stay focused enough on one thing to get anything done around the house, including things like making sure they eat.

ADHD people whose executive function won’t let them function at all.

And so many, many more examples are out there.

And basically, what people need, is help to do what they can’t do.  The same way that someone with a chronic physical illness, or physical disability, or developmental disability, needs.

And I honestly think mental illness and cognitive disability in general, including cognitive developmental disabilities, contain a huge degree of overlap to the point that the only reason they’re not classified together is an accident of history and diagnostics.

And at any rate, if mental health services wanted to do anyone any good at all, they’d be like the Medicaid waiver services offered to physically disabled/chronically ill, or developmentally disabled people.  Or rather like the best of those services:  You get someone to come into your house and do for you what you can’t do yourself.

And I don’t know anywhere that exists.

And it enrages me because I know so many people trapped in no-man’s-land because they have only psychiatric disabilities and can’t fall back on any other disability.

And even people who technically could, I’ve seen passed back and forth between DD and psych so fast they get whiplash.  Because neither one wants someone they see as belonging to the other.  (Which has been good for me, because no psych institution wants to keep me once they learn I’m DD.  "We don’t have the facilities for people like you.“  Great, great, get me the fuck out of here, I’ll put up with whatever condescending speech you want to give me as long as you let me leave.)

My friend, in the disability gulag, without support is a post I made ages ago about a guy who literally had three developmental disability diagnoses – epilepsy, autism, and intellectual disability – yet couldn’t get DD services in California because they wanted to force him to stick to the psych system, and his mother was interfering too, it was a mess, and I only hope he got even half of what he wanted in life.  He’s stuck in a board and care home in California, last I heard.  I remember he was being sexually abused by his roommate, and nobody did anything about it, although that’s not his roommate anymore, so at least there’s that.  And when you have to say "At least there’s that”, about that, just fuck.

And he wasn’t sure he was institutionalized.  I could look at him and see institution all over him, and he wasn’t sure that a board and care home was an institution enough to count.  He was the only person at Autreat that year that I could connect to on any level.  The support group that had failed me when I was at my worst, was really trying to help him, but having trouble.  (I wonder if it had anything to do with me being AFAB, I hate to say.)  Because his mom wouldn’t let him go, she’d say “they’re too high functioning for you”.  She’d let him visit me, because she saw me as low functioning enough, I guess?  She’d seen me on TV and suddenly idolized me and would call me so much asking for solutions I didn’t have, that I sometimes had to hang up, because she wouldn’t hang up.  (If I said I had a headache, her response was to get out an herbal remedy book and try to cure it on the spot so that I could keep talking to her.  It was utterly exhausting.  And I loved this guy, but his mom was near impossible.)

What I hated was when I was going to move away, and he kept saying that his trips out to see me were the only freedom he was ever going to see in his life.  He kept saying how even these tiny little things about being out with me and our mutual friend, made him feel the ache of freedom, and he’d go back and fight with his mom because he felt like she was keeping him confined, and that didn’t help him in the end.  He had no power.  None.  And it’s dangerous to give tiny amounts of hope to people with no power.  I still feel horrible and impotent when I think of him.

He was in California.

So were lots of people I knew in mental health housing of the worst sort.

He wasn’t even allowed food in his own apartment.

I just…

I can’t.

He could have been me, he so easily could have been me.  If I hadn’t encountered the right people in the autistic community, if they hadn’t insisted on making sure that my primary diagnosis was autism and not schizophrenia or schizoaffective anymore.

And not everyone has that “out”, as you’ve pointed out.

But it still could’ve been me, even so.

And if it isn’t me, it’s someone I know.

Most of the teens I was in the system with were destined for this, or for DD group homes, which can be just as bad.

It’s so damn hard to stay free and get what you need.

I almost think what you need is some ability to hire your own staff, but I don’t know how you can do that on your income.  Because if you could hire your own staff, you could determine what tasks they helped you with.

ARRRRRRGH.

(No, I’m not trying to solve everything at once here, I’m just frustrated because I’ve seen this so many times before.)