Posted in Being human, Developmental disability service system, HCBS, Self-advocacy

Let’s get one thing straight.

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

“I tell my story, not because it is unique, but because it is not.” -Malala Yousafzai

So when a social worker told me I had to understand that my developmental disability service agency is being nice to me, I saw red.  Especially when she explained to me oh-so-helpfully that many clients are getting nothing, therefore they are being nice to me by giving me anything, and I should be grateful and appreciative of this fact.  There was, of course, the implied threat that everything could be taken away from me, but that’s been hanging over my head for awhile now.  I fully expect them to try at some point.  Possibly soon.  Possibly now.

But anyway.

So.

To be really, really fucking clear.

There is nothing that I am demanding for myself that I don’t think every other client of the Howard Center should have.

The fact that some people there have nothing right now is obscene.

I am not causing them to have nothing by demanding what is both my right and their right.

Hell, I’m not demanding as much as I deserve.  I’m not even demanding all of my actual rights as a client of the developmental disability service system and a Medicaid waiver recipient.

Right now, I’m just demanding what i need to survive and live in my own home.

Survival is a human right.  Living in my own home is a human right.  As a client of the developmental disability service system, these are things that all 700-odd people under the Home and Community Based Services system in this agency are entitled to.  Every single one of us is entitled to the supports we need to survive and live in our own homes.  The fact that the agency doesn’t do things this way is an ongoing violation of those rights, not a thing that should ever be considered an acceptable state of affairs.

If I ask for these rights for myself, I am asking for them for every single other client of the agency as well.  I am not asking for them so they can take them away from someone else, and it’s fucking insulting, not to mention dangerous, to every client involved here to even imply that.  And it belittles — deliberately, in many cases — the work of the self-advocacy movement which has worked very hard to secure these rights for every single one of us.  I am here because other people demanded these rights for themselves, and they became known as rights we all deserved, and then they became available to me as well.  In asking for what I need, I am merely doing the exact same thing.

So don’t ever tell me that in asking for my rights i’m somehow taking away from someone else’s.

I’m able to live in my own home because Lois Curtis and Elaine Wilson demanded the right to live in their own homes.

When I demand that this right be upheld for myself, I am demanding that this right be upheld for every single other person with developmntal disabiliites and beyond.

I refuse to play their divide-and-conquer games.

I refuse to say that because other people are getting nothing, I should be happy I’m getting anything at all.

If I don’t get what I need to survive, I’m not getting enough.  If other people are getting nothing, they’re not getting enough.

I might not even be involved in this fight if it weren’t for knowing how many other people this is happening to.

So don’t ever get the idea in your head that all I care about is what I get.  I want to survive and live in my own home without being endangered by the very system that is entrusted with assisting me to live in my own home.  These are not excessive demands.  These are bare minimum demands.

They are playing a lot of head games and a lot of word games.

But I can still see what’s happening.

And I will continue fighting because I am not unique, my needs are not special, and an agency that exists to meet those needs, meeting those needs, is not a fucking favor.  Every single one of us deserves to survive and live in our own home, these things are basic human rights (and even legally considered them at this point, not that this should be the measurement of whether something is or not), and failing to meet them on such a large scale is evil.

Also, less than I need to survive safely is still less than I need to survive safely.  The fact that I could get even less doesn’t change the fact that I need more than this.  And that until recently, I was getting more than this without increasing my hours or changing anything.  (In fact, what they want me to be doing would require an increase in hours probably, so they can’t even truthfully argue this is about resources.  The proposed changes in my services would, even if possible, require far more time and effort on the part of staff than what was going on already.)

And no, I am not unique, that’s part of why all this frigging matters so much.  If I were the only person this was happening to, it would be a problem, but not the kind and scale of problem that is actually happening here.

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.

One thought on “Let’s get one thing straight.

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