Welcome to the Conversation: part 1
Introducing disability issues and experiences.
I sometimes wonder what it’s like to think about disability from the outside. I assume you all use your imaginations, or grab bits and pieces from knowing me or another disabled person, or gather ideas from shows or movies or books.
For a long time, I treated being disabled like a dark secret, something I couldn’t speak about, something to suppress. I believed disability screamed into the ears of everyone I met, and I had to coax her into a tight box labeled “unimportant” using my wit and poise and intelligence and independence (or something).
It turns out disability was screaming in my ear for all those years. In a psychology class once, the professor told us, “don’t think about a white bear” to illustrate that our mental spotlights don’t understand negatives. Ignoring disability, being so determined to hide her, actually brought her front and center.
It turns out when I gave her a little attention (and a fair amount of time with my therapist Stacey) she calmed down a lot. This reminds me of my cat Evey, who also gets louder if you ignore her. But unlike me and Evey, disability and I now have quite rational, even friendly conversations.
I still don’t know how outsiders understand disability, because I can’t see it from the outside, and I can’t try to understand you all without her by my side, and even though she screams less now, our conversation doesn’t end. I get clues about what people think from how they treat me, from their faces, from internet memes, from news stories, from TV plot lines. The evidence isn’t great, but I attempt holding realism and trust together and not tacking those beliefs onto every stranger or friend or family member out there.
Stacey tells me it isn’t my job to educate everyone or perform the role of the good disabled person, and that’s true. But now that disability and I have semi-rational conversations, I can let you in on some of them. Perhaps I can’t know how others see me or understand disability. The best I can do is offer you my best picture of how I see it.
The most basic feeling I could give to being disabled is alienation. Other ways to say it: the feeling of knowing I’m different from other people and knowing they know it too. Feeling distant. Feeling Other. Many other feelings of being disabled emerge from this one. For example, I feel frustrated a lot. But I feel frustrated usually because I’m moving in a space that wasn’t made with my body in mind; it was made with more common bodies in mind, so mine feels: alien. I feel embarrassed or ashamed a lot. But when I’m alone I almost never do. I just do basic problem solving between my body, the world, and my goals. The only time I feel embarrassed alone is if I imagine how someone else would see what I’m doing, and how it would look very: alien.
That’s where most of disability’s pain comes from. I think people don’t understand this. Disability is hard and comes with many unpleasant emotions, and almost none of those things have to do with my body, they have to do with my body placed here, in this time and space. They spring from my self in relation to other selves and my consciousness of your consciousness of me.
But I should add to this concept. It isn’t just alienation, because if I felt alien for something that made people think I was awesome and pretty and super smart or athletic or something, the feeling would be different. Then I could feel alienated like the Abominable Snowman from Rudolph who can put the star on the Christmas tree, or I could write songs about alienation via wealth and fame like rich and famous people do. That sort of alienation might feel bad sometimes, but I think it’s a different experience. I feel unlike Taylor Swift in that no one wants to trade lives with me and unlike the Abominable Snowman in that no one thinks I’m an odd but useful addition to Santa's workshop. (“Lookie what he can do!”)
My version of alienation gets sad faces, gets prayers I’ll stop being like me, gets more prayers that children will never ever end up like me. If the children do end up like me and you find out before they’re born, the doctor may offer you an abortion. I looked it up once.
And, I don’t know. Have you ever felt the need to look up whether the rest of the world thought your life was worth living? And discovered that not only had they considered it, but many had decided: maybe not?
I know that’s super depressing. I don’t mean for it to be. Here’s why I share it: it’s really important to locate the main problem with experiencing disability and what makes that a bad experience. Because the location of the main problem is in my relationships with people, in how the world feels about me, and in me knowing that, and in all the ways I’m reminded as I go about the world.
Here’s a factoid: a majority of disabled people estimate our qualities of life higher than non-disabled people guesstimate our qualities of life. That isn’t something I’m making up, it’s a study that’s been done. Human beings adapt to circumstances and environments and, it turns out, our bodies, really well.
An analogy has been playing around in my head for a while: think about what it takes to be a human person and create a fulfilling life in, say, South America. You learn a skill set. Your body adjusts to a climate. You become familiar with weather patterns. You eat certain types of food and wear certain types of clothing. Now imagine the same thing, but you live in Alaska. Same sort of human person, still trying to create a fulfilling life. Now your body adjusts to another climate. You get used to very different weather patterns. You eat other food and wear other types of clothing.
Some climates are even more extreme than these and seemingly inhospitable to human life. But do people stop living there? Most do! But some don’t. Who knows why? They like it, or it’s just theirs. They live lives that seem wildly inconvenient because of weather, food availability, living conditions, maybe pests and predators. But good for them. People live good, fulfilling, valuable, human lives in all kinds of ways.
My point is: people adapt. Imagine again: what if we swapped South America Person and Alaska Person? Let’s not give them any preparation or help either. Their experiences could range everywhere from irritating to funny to frightening to delightful to deadly.
The analogy works on a few levels. First, people do a lot of wild things to adapt to their environments and live their normal lives. Everyone actually has a body and those bodies have limits. The physical world tends not to account for human limits on its own, so we make efforts not to die or suffer because of our environments. Again, it’s just problem solving. We usually think that’s interesting, maybe even impressive depending on the ingenuity of the solution or extremity of the environment. We don’t usually pity it or think it’s a tragedy.
The world tends not to account for my body on its own, so I make efforts not to die or suffer because of my environment. It’s just problem solving. I use things like chairs and ramps and technology to adapt. But for some reason, daily disabled life looks like a tragedy.
Extend the analogy. People do some sorts of adaptation naturally—sometimes our bodies change themselves to adjust to an environment, like acclimating to climates or foods. But beyond a point, we have to adjust environments to our bodies. We can only be so cold before we need shelter, because bodies freeze. We can only live so far from water before we need to bring it closer or move closer to it, because bodies dehydrate and travel takes time and energy. That’s just what goes on for disabled people. I’m not sure if this is still an analogy or just an explanation. Our bodies cope with the environment to a certain point, and beyond that point, we adjust the environment to our bodies. It’s sort of as simple as that.
And so the similarity between, say, an Alaskan finding her way in South America and a disabled person finding her way in 2023 America is we’re both aliens in a foreign land trying to figure out how to live. Our bodies will do some of the work, and we’ll change the environment with tools and ingenuity when the body’s capacity to make do ends.
A difference, though, is we’re less able to look around and do what the natives do. Our bodies don’t do that. The natives also tend to get irritated when we ask for help, because it’s inconvenient and expensive. They may, however, feel sorry for us, and applaud when we overcome absurd and unnecessary obstacles, and get misty-eyed over demeaning stories on Facebook about people being nice to us.
Another difference, of course, is that I’m not foreign to human society. I am native. I’m just a native who’s been alienated by the structures and attitudes of her own people.