Daily Archives: 8 December, 2009

Recommended Reading for December 8

Human Dignity for People with Disabilities

You may remember that this past July, Susan Rice, U.S. ambassador to the United Nations, signed the Convention on the Rights of Persons with Disabilities on behalf of the Obama administration. The disability rights treaty is a comprehensive promise made by nations across the world progressively promoting the human rights of people with disabilities.

The convention is revolutionary. Last year, on the 60th anniversary of the Universal Declaration of Human Rights, ACLU Disability Rights Fellow James Felakos wrote that the convention describes disability not as “an individual’s condition but rather as the flawed interaction between that impaired condition and society’s lack of adaptation to it, departs radically from conventional thought and is a core concept of the Convention.”

Why I never expect to be right

And understanding language was only part of it. It seemed to me that everyone other than me was moving along to the pattern of music that I couldn’t detect. And that every time I tried to insert myself into the pattern, no matter how hard I tried the music turned dissonant and terrible and pushed me out again. So I would never have guessed that my ability to turn written into spoken words, or my general ability to find and memorize and analyze the world through patterns, had been impressive enough for a five-year-old to earn me a high score on a test that people believed all sorts of ridiculous things about. (Meanwhile the people who tested me thought those abilities meant so much that they would disregard my receptive language scores and all other scores that didn’t make sense to them. My guess is that my being white and middle-class also helped them forget.). I still remember the test and the manner in which I worked out the answers. I literally didn’t know the meaning of the word “test”. But my answers were apparently impressive for a five-year-old (not so much for a fifteen or twenty-two-year-old, but that’s another story.)

The Reformist The Radical

activists friends and i talk a lot about balance and energy. about how to work the system and how to do what we love (organize, create) but come to think about it, no, not everyone faces that problem. people who grow up as translators and bridge builders—folks who live in multiple communities, folks who had some privilege and were favored in some way by the system, mixed folks— are the ones who travel back and forth never knowing where they fit, what safe space looks like, when to switch up tongues. people say that both the reformist and the radical has to exist but no one feels the obligation to be both, to carry everything, like we do.

our communities fought so hard to be at the table, how could we not respect that & politely say no thank you to sitting there?…honestly our communities that we are working with don’t have the privilege for us to disengage, they need the resources, the funding, the connections that come w/ sitting at the table. (especially with disability and the daily things we need being so tied up in government). …we could spend a month with all our energy going to trying to fund something ourselves or we could use the dominant culture language skills we have to spend a day writing a grant application. …or these folks aren’t members of our communities but could be amazing allies if we put some time into it.

News:

Health Care Plan Could Cut Home Care

The impact of the legislation on Medicare beneficiaries has been a pervasive theme in the first week of Senate debate, which is scheduled to continue through the weekend.

Home care shows, in microcosm, a conundrum at the heart of the health care debate. Lawmakers have decided that most of the money to cover the uninsured should come from the health care system itself. This raises the question: Can health care providers reduce costs without slashing services?

I Hope You Feel Better

I hope you feel better.

They mean well. They always do. It’s what people say when they hear someone they know is in pain or ill or uncomfortable. I’ve learned that tears and “Why would you say that to me?” while an accurate reflection of how it makes me feel is pretty much guaranteed to lead to all sorts of unpleasantness I don’t want to have to deal with.

Whoa where did that come from I was just trying to be nice. What’s wrong with her? Can’t you just take it for what it’s meant?

I really can’t. For one thing my brain doesn’t process subtext quickly enough to have conversations at full neurotypical voice conversation speed — I’m doing the best I can keeping up with the text alone. But I don’t wear a sign that says “I am not good at auditory processing.” If I did I’d be explaining that all the time too. I don’t like talking that much.

(What’s that mean? It means I hear fine. I hear everything. ((When tinnitus isn’t in the way meh.)) What I have trouble with — and sometimes it’s harder than others — is pulling the thread of one person’s voice out of everything else that’s coming in through my ears and turning sound into meaning. If there’s a television in my visual field this task gets harder. This is why I take books to restaurants; I usually can’t make out what the person I’m eating with is saying anyway.)

Well. I can take it as it’s meant when it’s someone who doesn’t know me. When the person saying it doesn’t know that I have a disease that leaves me in pain all the time and exhausted all the time and makes it hard to walk and think and work and all the Weird Shit that goes along with it I can accept “I hope you feel better” because it doesn’t actually mean anything. It’s just politeness.

When the person who’s saying it has heard me or read me (often we’ve also had the conversation amndaw wrote about in her Who Hates to Hear They Look Great? post) it hurts. Lately I’ve been not eating much and throwing up a lot and it’s not a lot of fun. I mentioned that I didn’t feel good at my LiveJournal and every comment was a form of this. I even got one in imperative voice: “feel better soon.”

I have a chronic disease that isn’t curable and I have not heard of it going into remission. This is not temporary. Sometimes the symptoms are excruciating. Sometimes the symptoms aren’t so bad. They never go away. Even if I never feel any better than I do right now my life will still be worth living and I’ll still be happy and I’ll be okay because I work really hard at living my life and being as happy as I can in it. For me it includes accepting that I will not get better. It also includes some complaining about feeling rotten because accepting that I won’t get better doesn’t turn it into rainbow-flavored unicorn shit.

Demands that I feel better discount all that.

I want to tell people to please not say that to me. But I know how it’ll go. I’ll be the mean cripple yelling at people who were just trying to be nice. So I mostly don’t say it.

Bonus Section:
Since most essays from marginalized people on the topic of Insensitive Things Privileged Folks Have Said To Us will garner at least one comment along the lines of “Well if you’re going to tell people they shouldn’t say whatever how about you tell us what we should say.” At which I’m like thanks for the derailment attempt that’s so thoughtful! I am so delighted to do this work for you you have no idea. But I do actually have something here. An expression of sympathy that doesn’t include a request or demand that I do something impossible is always nice. I’m a really big fan of “That sucks. I’m sorry you don’t feel good.”