“Don’t Let Disability Define You.” Ummmm….What?!?!

Hello readers,

Today, we’re going to look at another common thing TAB people say to people with disabilities, or about them. I’ve realized lately there are more phrases like these than I thought. I kinda want to call them STABS–Stuff Temporarily Able-Bodied People Say. You could also make the first S do double duty, as in Stupid Stuff–and I’m sure some people would replace “Stuff” with something else…which you are more than welcome to do). And no, this does not reflect a desire to “stab” TAB people–it’s more like, “take a stab at understanding this stupid stuff.”

Ahem. So, today’s STABS: “Don’t let disability define you.” This is often rephrased as, “Don’t let it define you.” As with “don’t let it stop you,” today’s phrase is benevolently meant. When most TAB people say it, they mean, “I don’t define you by what you cannot or may never be able to do, and neither should you.” They mean, “You are an equal person despite disability.” They mean, in their own funny way, “Don’t let the TABS get you down.” If I look at “don’t let it define you” at pure face value, I can appreciate it. I understand where TAB people are coming from, and I am grateful that they want to see me in other ways, and they don’t align themselves with straight up bigots. So, what’s the problem?

The problem is, “don’t let it define you” has become, and perhaps always was, a casually ableist phrase. A lot of PWDs, especially advocates and activists, have a big problem with it because “don’t let disability define you” effectively erases their identity. The logic here goes like this:

“You say not to let disability define me, but I am a person with a disability (or disabled person, or whatever I prefer to be called–which you should also respect). If disability is part of my diversity, and diversity is good, then disability should be allowed to be as much of my identity as I want. To say ‘don’t let it define me’ is to take disability completely out of the equation. It erases me. It basically says, I’m okay, but would be much better if I were not disabled.”

And I just…I’ve gotta read that again, because ouch. OUCH. Yeee-owwww. For a middle-class Christian white chick who has done everything she can to say, humanity is humanity and privilege is not a thing…again, ow! I don’t care who you are or what political party you’re from or what deity you worship or what kind of snowflake you compare yourself to, or not. Making people feel “erased” is not cool! Furthermore, in any context, it is not okay to say, “You’re great, but you’d be even greater/cooler if you weren’t disabled.” I mean, for crying in the sink. Would you say that to any other minority? I hope not! (And no, it doesn’t escape me that my own tribe still basically says that to the LGBTQ+ population. Again, not cool).

Okay, moving on, because we’ve got more to cover. Another problem with “don’t let disability define me” lurks in the question, “What exactly do you mean by ‘defining?'” This can be even more ableist than erasing a PWD’s diversity, if that’s possible. Why? Because in using this phrase, a non-disabled person is basically determining what it means to be “defined” by disability.

Did you catch that? They don’t have a disability…yet they are telling me, or you–people who do–how to define our disabilities and interact with them! Does that weird anybody else out? Because I think that’s really weird.

Best-case scenario, this turns into a “buck up, kid” situation. It’s what happens when a benevolent parent, guardian, or friend tries to cheer up or encourage a PWD after an ableist incident, or after the PWD expresses self-doubt or consternation. Again, this is not meant as ableist and I would never call somebody ableist for doing it. But benevolently meant or not, the TAB person is still saying “don’t let it define you” because the PWD’s interaction with disability is making him or her uncomfortable. It’s still a place that says, “This is about me, not you. I’m not disabled, I’m the majority, so my feelings and concerns take precedence.” It’s kind of like saying, “Don’t cry” to a sobbing person. Yes, it’s uncomfortable to watch people cry. Yes, you want to fix it. Yes, crying hinders communication. But good grief, that person may need to cry.

Worst-case scenario, “don’t let disability define you” turns into a situation where the TAB person–again, often with benevolent intentions–steamrolls over the PWD in the name of minimizing the disability. This is the parent who forbids their autistic child to stim in public. This is the teacher who insists that their student perform without modifications or accommodations because, “Well, it just takes a little longer/you just need to try harder/you need to practice more.” This is the spouse who gets frustrated with their wheelchair-using partner because said partner finally put their foot down, so to speak, about an activity they don’t enjoy but grit their teeth and do because the TAB spouse enjoys it. And when the spouse with a disability speaks up, the TAB spouse is like, “I’m just trying to get you/them to go out in the world and try new things.” (Which, everybody should do that–but when, and what, and how much, is a matter of personal agency).

As with “don’t/doesn’t let it stop me/you/them,” “don’t let disability define you” also doesn’t make room for a PWD to ask for and receive help or support, whenever and however needed. I won’t explain this one; you can find a fuller explanation in the last post.

Finally, “don’t let disability define you” is, in my humble opinion, the most ironic example of STABS I have ever encountered. As mentioned, it’s ironic because it’s often said from a place of, “Don’t do this because your disability makes me uncomfortable.” But it’s also ironic because–say it with me–

NON-DISABLED PEOPLE DO NOTHING BUT DEFINE US BY OUR DISABILITIES!!!!!!!

I know, I’m yelling. Screaming, actually. Sorry.

But seriously, folks. How often do you encounter this? I’m not just talking about the ableist extremist who goes out looking to beat up on a wheelchair-user or mug a blind person or whatever. I’m also talking about:

-The employer who took one look at your wheelchair, your braces, your hearing aid, whatever, and flinched or looked the other way.

-The employer who asked you to disclose disability, either out loud or on a form, even though legally, they can’t do that

-The coffee shop owner who has one entrance to their place of business–a flight of wooden stairs. And yeah, they have railings, but what if railings don’t help? (This actually happened to me on Monday and all I could think of was wheelchair- and mobility-aid users).

-The bookstore or online service that charges you double for large-print or Braille books, or the library whose waiting list for those is a week longer than normal

-The private school that kicked out your kid, or threatened to do so, when they found out he might have a learning disability, because the school is for “intelligent” children only (this was brought up in today’s Care and Feeding column on Slate).

-The Facebook/Instagram/Twitter/Snapchat parent who posts videos or recaps of their autistic child’s meltdowns and struggles, basically for sympathy

-The church, synagogue, mosque, or temple that promises to welcome everyone, but yet doesn’t know how to react to your family member with a disability/places them in a segregated “ministry”/does not ask what they want/denies them participation (an autistic boy named Anthony was denied his First Communion in New Jersey this week because he allegedly cannot confess his sins or tell right from wrong).

And yet, you tell me not to let disability define me? You tell me it’s my fault for being negative and putting myself down? You give me no agency, yet you expect me to exercise complete agency over my disability–the thing you most try to control?

I don’t know whether to laugh, cry, vomit, or punch a wall.

Here’s the point: No, disability should not define us, if what that means is, letting TAB people control our lives and our access. BUT, disability is part of our diversity and our identities. To “erase” us is the same as saying, “This ain’t no colored restaurant” or, “Ms. Cohen, this country club is…exclusive.” You don’t want disability defining us? Too bad, so sad. We’re here, we’re not going anywhere, and we’ve got the right to be here…and define ourselves however we want.