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6:16pm April 14, 2013

I am so sick of having the difference shoved in my face like this.

“Yeah. We are gonna stay – tryin’ to stay ahead of it. Got it.”

Just said to my roommate about making sure her pain stays under control. Never said to me even when my pain level was literally 9.

Her pain level is 7, and from what she says seems vaguely comparable to my 7. The moment the LNA said the above quote she ran out grabbed the nurse and he came running in to give her any available pain med.

When my pain was 8-9, there was. Lot of dragging their feet, doing stuff that they knew was making it worse, eye rolling, “We have other patients you know”, pain meds hours late. Hell my pain right now has been in the 5-7 range, same as hers, and nobody ever rushes when I ask for pain meds, they still have gone an hour or more late in front of witnesses, treated it like no big deal. 6 and 7 is still bad, can still run up higher if you let it, still needs to be controlled.

They were able to get my roommate down to zero for awhile. With my body I can hardly expect that. But the attentiveness would be nice. Even a four would be nice. Don’t get me wrong I am happy they do this for her, I’m just unhappy they aren’t doing it for me or probably other people they think don’t matter. I’ve seen them positively dote on three roommates by now and I can see that their standard operating procedure for real people in pain doesn’t apply to unreal people like me.

And this is all born out by actual research into pain control for people with developmental disabilities. People don’t take our pain as seriously and they don’t put as much effort into treating it. Often they take our obvious signs of pain as misbehavior. Last time I was hospitalized they evacuated my roommate so she wouldn’t have to hear my moaning and occasional shrieking because I couldn’t take Lyrica and my nerve pain was acting up. I’ve never been evacuated because a roommate was making noises related to pain. Usually they don’t let my roommates get that bad for long unless they are also disabled.

“I can push that buzzer if things get really bad. It’s a really good secure feeling to know I can contact somebody.” My roommate just said that. Except when I push my buzzer, and someone comes in, they’re likely to find a quick way to leave then stay away. When they come for her, they immediately set to helping her and often bring other people in to help. Even if its something less important, even though she uses the buzzer more often than me, so it’s not that.

She thinks this hospital is wonderful. Because for her, it is. For me, it can be okay sometimes but other times it’s a nightmare. Make no mistake: What is happening to me is disability discrimination. It’s not because they don’t have the means to do better. I see every day they are doing better for my roommates than they’ve ever done for me. And most of the really bad stories I’ve heard have been from disabled people, poor people, people of color, and other people who don’t seem to matter as much to them.

I wish I had the ability to write down everything I’ve ever seen and heard here, to me and to others. Because this is not incompetence, it’s discrimination, and people always want to believe they’re just bad at what they do instead of refusing to do as much for some people as others.