There’s this thing that I’ve noticed from people who are generally very nice and reasonable people when I tell them about the ways that my neurodivergent brain affects my life. I might say something simple like “I really can’t handle socializing for extended periods of time,” and ask for an accommodation.
Then comes the special tone of voice, one of mixed surprise and condescension. Especially when my accommodations are for something that seems small to me, like asking that people text instead of call, or when I say that I prefer to be in a small group to a large group, I often get the sense that people are astounded that I’m so broken.
Some people have even gone so far as to say things like “Well YOUR life sounds so much more stressful than mine. I can call people on the phone just fine.” There’s an assumption that because my brain prevents me from doing certain things, I live in some kind of hellscape or that I’m severely limited in what I’m capable of doing, sitting alone in my house wishing I could pick up the phone or go out and party.
It’s weird, because when I say things like “I have lots of anxiety about talking on the phone. I really hate it and would prefer not to do it,” I am not looking for sympathy, nor am I trying to tell people that I’m unhappy with my life. I’m not trying to make myself out to be fragile or delicate or in need of protection. I am asking for accommodations. I’m letting people know that I’d like to do things slightly differently from other people. Often I’ll include the full extent of why I’m asking for the accommodation because otherwise people think I’m being a diva or won’t respect my request.
There’s a really challenging kind of circle that you get stuck in when you’re disabled or mentally ill or asking for accommodations: explaining to people how hard things are means they start to discount your competence, but not explaining means that they will assume you don’t need the accommodations.
More often than not I’m likely to let people in on just how hard things can be because we need more honesty in that discussion, and because often people don’t really get what it means to be chronically mentally ill. But I’m getting incredibly sick of people thinking that this means I’m fragile, or acting as if they’re better than I am in some way because they can do “basic” tasks. Bully for you. Sometimes I can’t eat food without breaking down. But you know what I can do? I can write a mean blog post, take over a social media page without blinking, and alphabetize the shit out of anything. I can see patterns in things, I can make connections between things, and I can hold down some awesome conversations about everything from living forever to the intricacies of disability activism.
But you know what? Even if I COULDN’T do all those things, I still wouldn’t deserve your pity or your condescension. Because there’s nothing about talking on the phone or hanging out in crowded places that makes me less or more human. I am not a worse person because I am uncomfortable with times when I can’t quite catch the social cues for when to start and end sentences. My life isn’t WORSE because I can’t do or feel uncomfortable doing certain things. It is made worse by people who won’t accommodate my need to not do those things and by people who accommodate with a side helping of judgment, but there’s nothing about talking on the phone that would leave me fulfilled in a way that I’m not right now (in fact I maintain that my life is way better now than it was when I was trying to do a lot of things that set off my anxiety).
Asking for help doesn’t make me weak. It is not an invitation to comment on the value or fulfillment of my life. It isn’t something that puts you above me. In fact it’s probably a lot harder than most things most people do. It is self advocacy. But more than that, it isn’t an admission of limitations. When I say that I have trouble with something I’m not saying that I’m giving up on my life or giving up on interacting with people. I’m asking for help to find another way. It’s just like someone who can’t reach a shelf asking for a stool: it’s not a judgment about their abilities. It’s a recognition that they need to do it differently than someone taller.
I see too many people acting as if a statement like “I can’t talk on the phone without getting anxious” is the end of the conversation. It’s not. It’s the beginning. It’s the point at which you say “can I text you instead?” or I ask for another accommodation. It’s a statement of fact but not a recognition of failure. There are things in this world that I will never do. Run a marathon, quantum physics, and also feel comfortable in group settings. No one gets all uppity if I say I’m never going to understand the intricacies of the theory of relativity, so why do they make faces like they’re sucking lemons when I say I’m never going to feel comfortable in certain social situations? None of those things diminish my ability to live a good life that I enjoy and that contributes something to the world around me.
And I suppose that’s the point isn’t it? When I say there are certain things I can’t do, some people think that those things are a prerequisite for being a functional, happy human. They think that I’m diminishing myself by recognizing there are some things I can’t do. They seem to think that I’m fragile, or I need protection, or I can’t be independent because I can’t or won’t do certain tasks that they see as basic or necessary.
There are certain activities that enough people do that they have become synonymous with “human.” Of course these standards of “basic human tasks” have changed greatly over time and in different places, so no, there’s nothing inherently human about eating three meals a day, or being able to strike up a conversation at a coffee shop, or making small talk. When people hear that I can’t do some things they take for granted, they don’t understand that there’s nothing all that great about the things they take for granted.
The more I can question the idea that I need to do certain things in a certain way in order to be ok, the better I feel. I can’t do some things. So what I need from the people around me is just a little bit of adjustment. There are some things all of you can’t do that I can do. It doesn’t make you less than me. I make adjustments for people around me all the time without giving them any side eye. Can we make it mutual?
We Got So Far To Go 