“So that’s the one that tells us what you want us to hear.”

Standard

A little background on how and when I was told that.

I was dealing with the San Andreas Regional Center, an agency whose real job is to withhold as much funding from disabled people as possible (I’ve even heard this from people who’d worked at the Regional Center), but who pretend to be about great humanitarians who fund us as much as possible. And hold big dinners about how wonderful and selfless they supposedly are. And so forth. But that’s a tangent.

The main background information they had on me was either:

  • Obtained from an hour-long interview with a relative who was under pressure from the interviewer to answer in certain ways and not others.
  • A few pages of diagnostic information from a psychiatrist.
  • Their own impressions from seeing me.
  • The inventions — out of her ass or something, I can’t figure out where else she would have gotten some of those “facts” — of a bizarre and scary case manager.

Needless to say, this was not a lot of information. In the meantime, I had a letter. The letter was from someone who’d known me for a long time and had been my primary caregiver recently. She knew a lot of things about me that would be missed by people hurrying by with diagnostic information and such. She condensed the most important things into a letter, sent from her position as an officer in an organization for helping autistic adults with daily living issues, and sent it to the Regional Center.

The letter contained more accurate information, by far, than people could have gotten from the other things. It contained a reasonably accurate assessment of my strengths and weaknesses and the kind of assistance I needed.

Anyway, at one point I told someone from the Regional Center, “Don’t look at the other stuff. Look at the accurate stuff. Look at the letter. It’s the most important one in there.”

The response, “Oh, so that’s the one that tells us what you want us to hear, I’ll bet.” Or something similar.

As if wanting them to hear the truth was a problem.

What kind of “service” are agencies providing if they trust the opinions of people peripherally involved, and trust short interviews and such and bizarre inferences, more than they trust the most likely source of accurate information?

And what kind of “service” are they providing if they refuse to see that what is important to me might just be the most accurate stuff?

I remember a video I once watched. Part of it featured a woman whose disability theory I’m not always fond of, because she has built it entirely around certain physically disabled people and left the rest of us out. But she said something important.

She said that disabled people are seen as manipulative, as needing to be pushed by non-disabled people into doing what’s right for us, as unable to understand that on our own.

Often we are seen as manipulative when we are only trying to run our own lives. Often when we do things that would normally be “manipulative”, what we’re doing is doing all we can under a system of power that prevents most other self-expression. But often, we’re just “manipulative” whenever we do something someone else wants, “unaware” whenever they want to emphasize that it’s their way that matters.

To SARC, who I am mercifully free of now: Yes, that was the paper that told you what I wanted you to hear. I wanted you to hear it for a reason. I wish you had listened instead of making power play after power play. I’m a real human being with a life, too, you know, and I bet you’d want accuracy and power in your own life too if our situations were reversed.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

2 responses »

  1. Yes, the paper I wanted them to hear was absolutely true at the time. (It wouldn’t be true now, because it referred to motor skills that I don’t have anymore, in what recreation I enjoyed.)

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