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12:18am June 4, 2014

lichgem:

It really makes me furious that my dad said he doesn’t think giving me money to SURVIVE ON is “helping” me because I actually DO have plans for my life, that I am actively working toward, but they are invisible to him because they are plans for a disabled life, instead of the life he thinks I should live.

Like, I have been making plans to see a neurologist, and plans to try a new medication that might help make my cognitive impairments less disabling, and I’ve been looking for services in my area that will help me leave my house, but since the only correct way to live is if I get a job and leave the house on my own, he doesn’t give a crap, and he wants to take over and go back to trying to harass me into becoming abled. And because at the core of it he thinks all of the signs of my disability are actually “choices” I make, he never sees that he, and every single other person in my life, has been doing this to me since I was a CHILD and NOTHING HAS CHANGED, but never reaches the right conclusion.

I want him to go away and leave me alone forever.

It can be really hard for even decent parents to understand their children planning for a disabled adulthood.  They aren’t used to anyone planning for that and they think it’s their job to push us into a nondisabled adulthood.  But your father doesn’t even sound like a decent parent.  So it makes sense that this is something he will just refuse, utterly, to see.

My parents eventually came around, once they saw how much better I was doing getting services, on SSI, etc., and that I could still be independent this way, just differently.  But my parents, whatever their flaws, love me and want the best for me.  I can’t say that of all parents.

I just hope that whatever happens, you get what you need.

I was very lucky in some ways.  When I hit adulthood, my parents had no preparation for the life I was going to need to lead.  They didn’t understand that SSI/DAC was the only thing I had going for me, for an income – they still had hopes that somehow I’d come up with something else, despite huge cognitive and physical impairments that made that impossible.  Nobody had told them about the DD service system, and I was still in the psych system, although trying my hardest to get out of it.

But at that point came into my life a woman that I now call my second mother.  I live next door to her now.  But she came in and helped my family help me get what I really needed.   She knew the system, she pointed them at SSI, she pointed them at the DD system, and they were able to between Laura (my second mom) and my real parents, help me get what I needed.  But I remember it took a lot of convincing in the beginning.  They had dreams for me, and this was not their dream for me.  It was not my dream for me either.  But we all rapidly figured out that it was better than the alternatives.

It doesn’t sound like your father is willing or able to adjust his dreams for you, and it also sounds like he’s an asshole.  Like a serious, serious asshole.  So do what you have to do.  Even decent parents have trouble with what disabled adulthood looks like.  Indecent parents, well… ugh.  It’s too bad, all around.  I hope you can make your life into what it has to be.  I’ve made mine, with a lot of help, into what mine needs to be, but you’re in a much harder position – you can’t fall back on physical or developmental disability services, which tend to be far better than psychiatric services.  Still, I seriously hope you carve out a life for yourself that you need, whether or not anyone else understands it, family or not.  Because that’s possible.  And it can be beautiful, once you have it.  But as a disabled person, even if you get everything you need, you’ll always be defending your right to live how you want to live, no matter how obvious it is that you need to be living exactly as you are.  There will always be people wanting you in institutions, or other programs (which are often essentially the same), or something other than what you’ve got going.  And you’ll always have to fight.  But it’s worth fighting for.