12:44am May 21, 2012

I am realizing how far I’ve come in terms of services.

That last sub threw me back to a much earlier time in my receiving adult DD services. When them sending her with the amount of preparation she had would have been a step up from normal.

And yes she did eventually work out where I was, that my vocalizations aren’t random, and that the proper response to my synthesized speech was not to ignore it. It just took awhile. And it was a long shift. Probably for both of us. But we got through it.

I used to get IHSS (In Home Support Services) from this agency in California that cared nothing for its employees or its clients. In California I got some combination of IHSS, ILS (Independent Living Services), and SLS (Supported Living Services). But my IHSS agency, where my very first services came from, was just horrible. (I continued to get IHSS after getting ILS/SLS, but IHSS was the first, initially put in place to stop me from starving and living in utter filth. Well I still was hungry a lot of the time but less. And how filthy? The first worker who came in my house basically said “Oh my God, I’m not authorized to clean a place like this, I need to call and get them to send someone else.” It was bad.)

So anyway.

Nobody was sent over prepared by anybody with any information about me or what I needed. People would come over and ask things like “So what’s wrong with you?” especially if they saw me stimming. Which was usually.

The worst instance of preparation was the time they sent a woman over. She did not speak any language I could recognize. There was no interpreter. I could not run out and find someone to interpret because I couldn’t figure out what language she spoke. She had been given no instructions on what to do when she got here. I was terrible at using body language to explain things. This is what I mean when I say they did not give a shit about either employees or clients.

One time I had to cancel just before someone’s shift. Knowing how little people were paid and how draconian the policies, I asked if she was still getting work or payment that day. They literally said something on the order of “Who cares?” This is why I and other clients often signed time sheets for people who for some reason were prevented from doing the work.

(But then there were the people who used shifts as a coffee break. As in literally sat in my living room and drank coffee for a few hours. The agency didn’t really care that they weren’t doing any work at all. And I’m not talking about even doing a few things. I’m talking nothing but sitting and drinking coffee. Nothing at all. That was always great for getting really overloaded by people’s presence but not even having any food or anything to show for it. This was a studio apartment so there was no escaping anyone who was present.)

I also remember how much difference it made when I really could find an interpreter for people. The agency never provided one. But if I found someone willing to help out, I was happier, staff were happier, and more got done.

They also didn’t make sure staff had the skills necessary to help me. And I’m talking about like… the time someone cooked me dinner. I took a bite and almost threw up. They had cooked rice. Added in uncooked, rock hard beans. And then filled the whole thing with an amount of rock salt equal to the amount of rice. I’m not just talking food I don’t like, I’m talking food that’s not edible. This happened a lot. So sometimes the goal of preventing me from going hungry was more abstract than real.

This agency was truly just horrible in every way. It didn’t pay worth shit. It didn’t provide information to staff about me or what I needed done. It didn’t make sure they had the skills to do it. I was usually too stressed to communicate properly. And it didn’t really care about me or staff. Or even make a pretense of caring.

The problem was also that I was constantly expected to be grateful that I had anything at all. And combine that with the way that when something happens constantly it feels normal. I often didn’t feel like I deserved any better. Yet even in this state where I took way too much of this stuff as how things should be, I was constantly getting told I was too demanding and too militant and too aggressive. Not by the IHSS agency. They didn’t even care enough to say stuff like that. But certainly by ILS and SLS agencies. I once got told I had too much sense of entitlement when I expressed a desire to eat at least once every day of the week.

And in that regard I think I was also being punished for being fat. I had been stick thin while at the worst of my time before services. My bones poked painfully into anything I sat or laid on no matter what position. I began to get access to food on a more regular basis and I became fat. Because my body was trying to get the most out of every calorie. But food on a regular basis did not mean food at least once a day. It didn’t even mean junk food, most of my food was fairly healthy. But people repeatedly refused to believe I was going hungry because people who are five two and 170 pounds aren’t supposed to be experiencing hunger in any way. So instead people would tell me I needed to be grateful I got anything and that expecting to eat every day was being a Bad Client.

At any rate it seemed like any position other than boundless gratitude for crumbs was being bad in some way. Even when you just wanted some of the most basic things. You were supposed to shut up and take what they gave you even if your life was threatened.

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