Listen to this post:
I’ve been having some delightfully engaging conversations with two people deeply connected to disability. They have years upon years of direct lived experience around disability, stigma and oppression. And we have been talking a lot lately! I can’t get enough.
Here are the two themes we’re on: communication and just being people together. All three of us are longing for–and working for–that time when we all know how to respectfully accept all types of communication. Because then we can just be people together rather than being treated differently in a hurtful way. Here’s where it gets sticky: some disabled people would say they don’t want to be treated differently at all. I respect that. But I do want that for myself. Let me explain.
People gasp when they hear me say I want to be treated like a person with a brain injury. Gasp. Shock. No. What I mean is I want people to accept that I need instructions simplified and repeated and slowed way down. I need reminders and help using calendars. Sometimes I come across as rude when that’s not what I meant to show you. I can’t always maintain eye contact even if it hurts your feelings that I won’t look at you. That’s what I mean by please treat me like a person with a brain injury. Accept that I am different. Once you can accept that, then we can just be people together, lots of different kinds of people. Together.
This goes so very far beyond disability, though. For instance, I want white people to stop calling black people “articulate” and “brilliant” for speaking honestly about their experiences just as much as I want nondisabled people to stop calling disabled people “articulate” and “brilliant” for speaking honestly about their experiences. Sometimes we communicate those experiences in a way that’s familiar and comfortable for the audience, and sometimes we don’t.
Here are some communication differences some people with brain injuries have that other people can work to accept so that we can then be people together. (Because I am white, cisstraight, and otherwise fairly mainstream from the U.S., I’m not going to address communication differences in any other cultural context besides brain injury. Other people in other communities should, and are, doing that .)
1. Sometimes reading is easier than listening. But sometimes listening is easier than reading. Sometimes we want both. Sometimes we need it to be neither for the moment. We might even want to draw the idea or ask you to draw an idea rather than use words. It fluctuates. For me, talking is easier than listening. That’s one reason I want to talk more than I want to listen to you. I’m not being rude. I just can’t keep track and don’t want to always face how angry it makes me that I get lost when I listen. (Also, I am rarely admitting to you how often I get lost, so you probably don’t even believe me right now. Please, believe me.)
2. Eye contact can be hard. Some of us need to look at something that doesn’t move around. A wall or floorboards don’t tend to wiggle like eyes do. So they can be easier to focus on so we can listen better. Eyes can be distracting, sometimes even threatening.
3. That background noise you hardly notice? I notice it! If the TV is on, even low, and you ask me a question, and I don’t answer? It’s because the TV is on. I can’t parse what you asked. Or I can’t formulate my answer with the noise. Or I can’t pull my attention away. Or I am so neurologically overloaded by trying to take in you and the TV at once that I’ve fallen into a rage and need to deep breathe now.
4. Sometimes we use a word that’s not a real word or isn’t exactly the one we meant. That’s not fodder for a joke, please. If you get what we meant, you don’t need to correct us. If you don’t get what we meant, kindly ask rather than just nod and say, “Sure. Uh-huh.” Sometimes we know it was the wrong word, and sometimes we honestly don’t. Either way, the issue is about communicating our ideas, not the utter perfection of word choice and pronunciation.
This is just a few things. I’d love to hear from other people about communication differences that you want more people to accept as valid and not joke-worthy so that we can connect better. Drop me a line or leave a comment! Sharing this information is how we learn these things.
2 responses to “Just people together”
when I ask a question such as: what are you telling me to do? or what is this thing? or what is happening now? what are we doing next? and people look at me like i’m trying to be annoying/humorous/ironic. and i’m like oh boy. can you tell me? and stop making me feel weird? cause then i could interact more or be involved in this environment more or engaged in the situation we are in. otherwise i’ll just be over there, or i’ll be confused and start dissociating most likely. summary: people don’t take my questions/asking for information seriously! and that seriously sucks
Thank you for adding this to the conversation! It happens to me too! When you ask a question like that and people don’t think there’s anything that would confuse a “normal” person, they blow off your question. I have people say to me, “I know you can figure this out. It’s a no-brainer.” And I die a little inside. First of all, “no-brainer” is really nasty when you think about how they are saying “all normal people could understand this, so if you don’t, you’re abnormal.” To me, it’s another way of devaluing people who might have any cognitive disabilities or impairments, even some kind of cultural or language barrier that might prevent them immediately getting it. But the other thing is that people keep assuming that if they could understand something at first glance that I will too. I guess it’s supposed to be a compliment. But it silences us, and it lets us know that they don’t believe or refuse to understand that we mean it when we say we don’t understand. It’s not simple, Ls, but people try to make it simple. It would be simpler if they believed us and answered the questions the first time we ask. I can see why you would start to dissociate when your genuine attempts to stay engaged and laughed off. Darn it!