The Limits of Advocating for Other People

In our town, there’s a bus for elderly and disabled people. It picks you up at your house, takes you grocery shopping, to doctors’ appointments, to anything within its range. On the one hand, I’m very excited; I would love to do more things by myself. On the other, I’m very nervous, because the bus is a new thing to me and I don’t really know how to use it. I’d need someone to come with me until I got the hang of it, someone who knows how my impairments work. My mother is usually the best assistant for things like this.

But she says, “A bus driver molested a little girl who was deaf ten years ago.”

                                                ***

My mom is meeting with my new psychologist alone, telling her all the needs I have. The emotional things. The social things.

“Did you tell her how I’d like to get around town better?” I ask her.

“Oh, I always forget that!” she says. “I’m sorry!” And she is sorry, but she forgets.

                                                 ***

My mother and I live in the same house. She lives upstairs, I live in the half-basement. I do my own laundry, my vacuuming. We go shopping together because I don’t drive, and I pay for my own groceries. When a friend picks me up to hang out, I tell my mom what my plans are out of courtesy, but it’s not like when I was in high school and she needed to know where I was at all times.

I like how my life is, for the most part. I would like to go to more places alone; my problems doing so have as much to do with the sheer inaccessibility of where I live as with any impairments I have. (There’s a Runza restaurant across from a very busy street that has no “Walk/Don’t Walk” sign. The state doesn’t want to “interrupt the flow of traffic” by putting one in).

My mom doesn’t mind driving me where I need or want to go. My friends and cousins don’t, either. I have no interest in driving; I’m grateful for their help and am very lucky that the people in my life don’t see giving me a ride as a burden. Still, I’m a pretty introverted person who happens to need a lot of help. My interests are mostly solitary. I communicate best in writing, outside of real time. And I like doing stuff on my own.

“But you don’t need to do all that stuff on your own,” my mother would say. “I don’t mind helping you.”

“I know. But it’s important to me.“

She understood, then.

My mother is not a bad parent. She is, in fact, the best parent I could ask for. And I know that you’re always your mama’s baby no matter how old you are. But we have to navigate some problems that are easy to run into when you’re a disabled adult who lives with her mom and is still her baby.

“I wish you wouldn’t cross that busy street!”

“Did you take your medicine?”

“I can’t believe you walked all the way up there in this cold.”

This kind of thing is annoying, but better than the alternative. Throughout my life, teachers, professionals and other family members have assumed I could do all kinds of things I couldn’t do. In junior high, school let out early and I went to the office to ask if I could call my mom to come pick me up. The receptionist said, “Don’t you live a few blocks from here? You don’t need to bother your mother with that.” My special ed teacher told me that math was “easy!” (for her, maybe); in college my academic advisor didn’t understand why I couldn’t just double-major in English and Classics. (“You’re grades are so good, your courseload is obviously too light for you.” My grades were so good because I had a light courseload).

Still, the balance between having too much help and not enough is one we always have to be conscious of. And we both make mistakes. (I don’t go to bed at a decent time, tend to use my benzacline once a day instead of twice, and hate using my sinus rinse even though it helps because it feels like I’m drowning.) I think this is something that all parents and their kids–no matter how old those kids are–need to be aware of. And I think it’s especially important for parents of kids who have difficulty communicating. (This includes disabled kids and very young kids without disabilities, as well).

A parent advocate may be speaking in support of their kid, but xe isn’t the kid. A parent and kid may have different opinions on what the kid wants or needs. The gaps in my communication skills are very hard for most people to notice, and my mom and I still have differing ideas about what I want and need. If a kid has more communication problems than I do, then what Dave Hingsburger once said about the ethics of touch and severely disabled people applies here even more: Parent advocates have to be more careful, not less. As Amanda Baggs says:

To me, ‘more severely disabled’ (however that gets defined) means less able to fight back, less able to talk back, less able to do anything about what is happening. (Where ‘less able’ can mean ‘less enabled’.) And to me, that means being more careful about violating the rights of people regarded as severely disabled.

Nobody’s perfect; not being perfect doesn’t mean you’re a bad person. But if you don’t recognize your imperfections, there’s no way to remedy them and the problems they cause.