I’ve been very public with my vision issues and my recent experiences with anxiety. I do this to normalize disability. Living with disability is totally normal for me and for lots of other people. The most recent statistic I saw is that one in four adults in the U.S. has a disability at any given moment. The longer you live, the more likely it is that you will acquire a disability. My late husband is a great example: he lived without disability for decades and then when he was 60, he had a massive stroke that left him with multiple disabilities. He went from completely able-bodied to disabled in a split second.
Despite the fact that so many people are or will be disabled, we have a hard time as a culture understanding disability without judgment. The assumption that everyone is or should be able-bodied is called ableism and it is everywhere. I wrote about the challenges my late husband and I faced trying to get around downtown Denver when he was using a wheelchair last year. The restaurant that required wheelchair users to send a companion in to ask for help, wait for the right employee to materialize, get escorted around the building, and then traverse a large space in front of an audience had designed its entrance with the assumption that all patrons would be able-bodied.
I recently listened to a fantastic podcast on ableism. Glennon Doyle featured Carson Tueller on the July 27 episode of her podcast We Can Do Hard Things. The episode was titled “How to Love Your Body Now,” which is an idea that can apply to anyone, able-bodied or disabled. Carson Tueller, who was paralyzed from the chest down in an accident in 2013, told the story of how he came to accept, love, and feel at home in his body, recognizing it as “complete and enough.”
Tueller explains ableism as “the idea that there is such a thing as a good body and a disabled body is a broken version of a good body.” I like this explanation because of its use of the word “broken.” Something that is broken is damaged or ruined. We throw out things that are broken. When we understand some bodies as broken, we bring with us into that understanding the connotations of “broken”—that the body is ruined, it should be thrown out. The person living in the disabled body is seen as disposable. Unlovable. Unworthy.
Tueller shares that after his accident, he found a new way of thinking about his body. Instead of thinking of his body as broken, he thought, “My body now works differently.” That may seem like a small shift, but as Tueller explains, there is “no drama, no brokenness there” and that thinking of the accident as something that changed his life rather than as “a disaster that ruined my life” made it possible for him to see his body in its current state as complete rather than broken.
Notice that it’s not the injury or disability itself that causes the feelings of disposability or unworthiness—it’s the ableism that assumes a disabled body is broken. As Tueller says, “I can survive being paralyzed. I can’t survive feeling unlovable.” Tueller has found that living in a disabled body is quite wonderful (and I was thrilled to hear him disrupt the notion that disabled bodies aren’t sexy or that disabled people are asexual—he is having great sex).
When we assume that disability needs fixing, we convey that disability is a de facto problem, that something is wrong with people who have disabilities. There is nothing wrong with my eyes. My eyes can’t be wrong. Yes, my eyes function differently from lots of other eyes. But my frustrations with my vision are usually connected to something outside of me that could be fixed. For example, one of my most common challenges is not being able to read signs. Why is the assumption that my eyes are the problem rather than the poorly designed signs? I meet people all the time who can’t read street name signs, street numbers on buildings, and the like. Why not just make bigger signs or use a different font and make everything easier for everyone?
This idea that the problem is located in the person with the disability is ableism and it sneaks into our lives in insidious ways. In “Unlearning the Ableism of Cookbooks and Kitchen Wisdom,” Gabrielle Drolet brings attention to what she calls small-scale disability—”the little things that add up to make a life. Things like tying your shoelaces or braiding your hair or lighting a candle. Like turning on the faucets to wash your hands. Texting your friends. Cooking with ease.” The type of ableism Drolet identifies in cookbooks is less about brokenness and more about laziness. The cook who buys pre-ground pepper or uses paper plates is assumed to be lazy or wasteful. I was called wasteful when I bought two identical cutting boards, one in white and one in green, but with low vision, I can’t see the onion I’m cutting on a white board or the basil I’m cutting on a green board. The person who called me wasteful didn’t ask why I wanted two boards—they jumped straight to calling me wasteful.
Ableism is so deeply baked into our culture that during Disability Pride Month (July), someone asked me why anyone would take pride in being disabled. This was a person I know to be kind and generous. The question was a genuine one and grew out of the idea that being disabled equals being broken. Why take pride in being broken? To grasp taking pride in being disabled, you have to reject the idea that disability equals brokenness.
I am not broken. I do not need fixing. I love myself, my eyes, and even my anxiety. My low vision and anxiety are natural and normal. I refuse to be ashamed of them.