I’m a cancer patient, or maybe a survivor. The labels are not as important to me as they used to be. I’ve done a lot with language on this blog (now, newsletter) over the years, and I’ve taken up issues about survivorship, “battling” cancer, making a case that we call caregivers, “care partners,” because we’re in partnership with each other and our care teams. These represent important discussions in so far as language reflects our thinking, and I think the inverse is true, too, the words we choose to use influences our thinking.
For example, I’ve been a wheelchair user for some time. These days, I manage just fine with my cane, but still for long distances, a wheelchair is useful. I would never describe myself as “wheelchair bound,” because the reality is that I’m “wheelchair free”; that is, I can go places with a wheelchair that I couldn’t access with my cane and unsteady gait alone. This is a little exaggerated because I try not to use my wheelchair, much to Whitney’s displeasure, but my failure to take my own advice in terms of wheelchair use does not undermine the argument I am making: We are not bound by our wheelchairs, we are liberated by them. And so, if someone were to ask, “Is so and so wheelchair bound?” I may reply, “Yes, they use a wheelchair; they are a wheelchair user.” Role model the language you’d like to hear; be the change.
That a cane suggests disability and an over-the-counter knee brace suggests athleticism exposes nothing other than our biases.
Assistive devices assist us, like your contacts or your glasses or the knee brace you slide on to play rec basketball. A wheelchair is no different, except for an arbitrary and unhelpful distinction we’ve made between a cane (“ooooh, disabled; elderly”) and a knee brace for basketball (“you’re staying active, good for you”). That a cane suggests disability and an over-the-counter knee brace suggests athleticism exposes nothing other than our biases. Each is a tool to enhance our performance. It would sound silly to complain that after rolling his ankle on Sunday night’s game that Patrick Mahomes is “kinesio tape bound.” No, he’s a kinesio tape user. It enhances his performance more so than playing without it. Next time you grab your cane off the coat hook on the way out the door, say to yourself, “I’m the Patrick Mahomes of canes.”
This is why language matters. When we say “wheelchair user” we are reclaiming our agency, and that’s a good thing. We choose to use a wheelchair because it is performance enhancing. So why continue to feel awkward about using my wheelchair? Well, for two reasons, the first is internalized ableism, in other words, the idea that people with disabilities are inferior to nondisabled people. You’ll notice this when using your wheelchair that a nondisabled person will speak to a friend or partner who may be pushing you in the chair rather than lock eyes or address you directly. Rather than addressing you, rather than making eye contact with you, people will speak to the nondisabled person you are with.
Language should always be owned by the users of the language to describe their situatedness.
One time when deplaning after a flight with Whitney, she handed me my cane, as I struggled to get up from my seat. Those narrow aisles are difficult for anyone, let alone someone with motor impairment and damage to proprioception, the faculty that allows us to “feel,” or perceive, our body and movement in the environment. After I finally shimmied to my feet, Whitney reached to pull down my carry on and a guy standing a row behind us asks her, “You have to get his bags for him, too?”
Hey, jackass, I can hear.
Wrapped up in ableism is the idea of a sort of disability essentialism. Essentialism is the idea that certain traits and attributes are fixed and inherent. Living with a disability reduces you to the outside world as a disabled. Period. As though, your entire identity is defined by your body. Like this guy who rather than lend a hand or mind his own business decided instead to verbalize his observation and disdain. I’m no longer his peer in his eyes, I’m disabled, and that’s all that I am to this person—to many people! I don’t even notice the staring anymore, but sometimes we’ll walk through a crowded restaurant to our table or cruise down the grocery store aisle and Whitney will say ask whether I noticed the looks. I should get a shirt that says, “My eyes are up here.”
This is that part of ableism that reduces anyone with a disability to their disability alone.
The second reason that I always shrug off grabbing my cane for a short trip or refuse to use my wheelchair on a tough day is the structural expression of the individual ableism: Our society is not designed for all body types.
It’s not like older buildings were built without ramps because no one had motor impairment; rather, disabled people were hidden away, or worse:
In the nineteenth century due (in part) to the Eugenics Movement, there was social policy implemented to deal with the “defective” and disabled members of society. The earliest institution for “defectives” and “feebleminded” persons in the United States was established in Boston by Samuel Howe in 1849. It was Howe’s intent to educate the “defectives” so that they could return to society. However, he was so successful in removing unwanted persons from the streets and from public sight that families and communities refused to have them back.
Handicapped parking is at a premium, retail stores and restaurants don’t have adequate space to navigate a cane or wheelchair, there is no storage to hang a cane or store a wheelchair, elevator waits are long and out of the way… these are the systemic issues that arise when society just forged ahead, privileging the nondisabled. Accommodations are perceived as a burden. I’ve been employed at places where the ADA code was, “I hope we don’t get inspected.”
Like all prejudiced, discriminatory and bigoted behavior, that an individual may be a bigot is their problem, but when prejudice has access to power, then you have systemic injustice. We have simply failed to design a world open to all.
In this way, using my cane—and probably working to dismantle my own internalized ableism and using my wheelchair more often, is an act of resistance. My disabled body is a revolution. I’m the Patrick Mahomes of canes.