Utopian Daydream

I can’t stop having this idea.

I keep this idea close to my chest and don’t show it to many people because I haven’t indulged in this degree of idealism in probably years.

My mom used to work as an occupational therapist. When I ask her about it, she tells me, “Everyone can do something.” My dad used to be a Marxist; he is fond of quoting “From each according to their abilities, to each according to their needs.” Disabled people have a lot of needs. We also have a lot of abilities. So here’s my idea: disabled people living together as each other’s support staff. Get a group together, and see if everyone giving what they can means everyone gets what they need.

It might work something like this: maybe you would wake me up in the morning and make sure I got showered and dressed and then I would cook us breakfast or help someone else take a bath. If I can’t drive, maybe someone gives me a ride to work and if someone else can’t talk, I could make their phone calls and if you can’t lift your arms, maybe they could do your dishes. I proofread your emails. You help me with my taxes. We lend and borrow spoons. We fill in the gaps.

Would we still feel "broken" if the pieces all fit together?

Guilt-allaying things people tell me over the internet

So I think I've mentioned before that I deal with a lot of guilt due to the amount of late work I turn in in my classes, or the fact that I can't do all my reading -- various lapses of academic performance. But lately people have been saying awesome things, on chat or in emails or in blog posts that I read, that help me put the guilt aside for a little bit. I save these communications, and I take them out and look at them later, and I remind myself that people love me and I am okay.


"You are a very good student. However. There are a lot of ableist expectations for what being a very good student means. I know you have had a tremendous amount of your self worth wrapped up in your academic performance since FOREVER. But you might want to consider whether you want to continue basing your self worth on how well you adhere to standards which are not designed for Zoes."
-Asher

“You and I both space out when we should be working on things. The difference is I meet deadlines more often. The difference is prob because I can pull all-nighters and you stop functioning. It’s not me having better discipline at all. It’s me having more energy.”
-My girlfriend

"I'm so proud of you... the more I learn about ASD the more I admire and respect how you've gone about building your life."
-My dad

"All too often I find myself waiting for the day when I can do shit properly, which more or less amounts to waiting until I'm not disabled anymore. Then I can feel good enough to deserve everything I want. Well my cure is slow in arriving, so I'm just going to do everything I want now, if that's okay with you."
-Amanda, in an amazing post about executive dysfunction

Respect, and the Other R-word

At dinner last week, I was talking to one of my friends about the drama department. Across the table, another friend – I’ll call her Melanie – covered her mouth with her hand as if she had just cursed inappropriately. “Oh no!” she moaned.

My girlfriend leaned towards her and patted her on the shoulder. “If you start to say it, just say ‘ridiculous’ instead,” she advised.

I realized what had happened – Melanie had used the r-word, and then realized that she had done it. She looked up at me and said “I’m sorry! I feel like I let you down.”

I got up and walked around the table to give her a hug.

At first it was hard for my friends to remember even to avoid the r-word around me, let alone to cut it out of their vocabularies entirely. But gradually, they all stopped saying the word. They started telling me that now, they cringed when they heard someone else say it. I saw them explain to other people why using the r-word was wrong. My old roommate even asked his colleagues at his summer job to stop using it.

I think that now, they all understand that the r-word has real impact, that it hurts me and other disabled people. They didn’t all think that last year. But they got where they are now because they took me seriously when I said I didn’t want to hear that word from my friends.

I have the best friends ever.