A few days ago, my wife mentioned a podcast episode that made an impression on her. It's an episode of The Allusionist, in which Helen Zaltzman and Christa Couture discuss loss, ability and disability. It's a moving conversation with lots of important observations, but one that my wife noticed specifically was Ms. Couture's comment on "identity-first" compared to "person-first" language. I'll transcribe that part of the conversation here; HZ is Helen Zaltzman and CC is Christa Couture:
CC: I mean, "disabled" and "disability" for some people land as negative words. And I think our first problem is there. They're not, they're not. I use identity-first language over person-first--and that's to say "I'm a disabled person" over "I'm a person with a disability." And that is for a couple reasons: one because I just dont think I should have to reiterate and highlight that I'm a person; that just should be granted and should be clear.
HZ: If you're using language, then: probably a person.
CC: Yeah, probably. I shouldn't have to assert my humanity. So that should be a given. But, what I like about being able to say "disabled person" is, it can actually help highlight what is outside of me, and actually doesn't have to do with my body. Because I'm disabled by many things other people aren't. Like, in Toronto, our subway system, I think, only four of the stations have elevators, so there's a bunch of stations that a number of people can't use; so we're disabled by that design, by structural things and systemic things. So for me, it's helpful when I say "I'm a disabled person," because then we can look at all of the barriers that I happen to face, vs "a person with a disability;" I feel like with that, we're less likely to say "ok, but how does that actually play out in your day." My disability, my particular disability, matters less in certain settings. I'm impacted by it less depending on what I encounter. And so, yeah, that's just an equity issue--but I also, because I can't extract it from who I am, as much as I can't extract being white-presenting, being short--these are all I know, and the same with being disabled--at least for the last 30 years--it's not some thing, it's not an accessory. But it's something around disability that I think we see a lot, and again, it's people's discomfort, that they're attaching to the word, that there's something negative about being disabled, like "oh you're not disabled--don't say that," like "but you're so talented." I'm like, "I know, I know. And I'm disabled."
Throughout the conversation, one of the themes is the tension between what I would call external observer comfort and assertion of lived experience. In an encounter between a disabled person and a non-disabled person, there is a simple fact of difference. When you perceive yourself to be on the "strong side" of that--being the non-disabled person interacting with a disabled person--if you've been socialized in the Western humanist tradition which asserts that all people are fundamentally equal--it's natural to experience that fact of difference as cognitive dissonance and to be made uncomfortable by it. That's no bad thing--in fact, it's one of the signs of a working moral compass that one feels discomfort when one enounters unfairness in the world. In some cases the unfairness is human-created and has a human solution--what Ms. Couture describes as "just [equity issues]," like making sure subway stations have elevators. But there is also another sentiment in what she says: "I can't extract it from what I am...it's not an accessory." That is, the "strong side discomfort" in an interaction--the feeling that you're interacting with someone who has been unfairly deprived of something that you possess--tries to resolve itself through a kind of panicked reflexive redistribution--to quickly reach for a "you're so brave" or an "I don't think of you as disabled" that intends to symbolically rebalance the interaction and alleviate the observer's feeling of discomfort. But because this rebalancing is only symbolic, and offers no meaningful help to the person perceived to be on the "weak side" of the interaction, it is often described as erasing--it is a tactic that uses an initial acknowledgement of an imbalance as an excuse to proceed as if the imbalance doesn't exist.
This is the point where thoughtful people start to despair, or worse, get annoyed. Because there's no right answer, and yet the interaction has to proceed. It seems--especially for people who don't usually find themselves on the "weak side" of these types of interactions--unfair that one should be forced to commit to a move when there are no good moves available. It's unfair that you should have to experience the discomfort of being implicated in the unfairness of the world; that, just because you're the one who happens to be in a particular interaction, you become the representative of that unfairness, despite knowing that unfairness is not in your heart. But that's also when you have the opportunity to shoulder some of the other person's emotional burden, if you're able. Not by fixing, and certainly not by rattling through a resume of good works--but by simply experiencing that discomfort internally without trying to avoid it or externalize it or negate it--by recognizing the unfairness that you feel in the interaction and letting it stay an unfairness that you experience, that you bear. To accept that burden is to validate the other person; to acknowledge, without trying to "fix," the fact of difference.
If you can get past that point--the point where you're able to experience the discomfort of being implicated in unfairness without externalizing it, negating it, or rejecting it--you will find that it is a great source of intuition about how to behave. In the quote above, we saw that Ms. Couture prefers identity-first language for some specific reasons. I do as well. I think there are also people with similar life experiences who prefer person-first language, for equally specific and well-thought-out reasons. I doubt a right answer will emerge, nor is it possible to know in many situations (like this blog post) who you're speaking to and what they prefer. That is: we are guaranteed to be wrong, and to hurt people, some of the time. It ought not to take this kind of example to convince one on that point; humans are limited and fallible enough to expect this result even without catch-22s. But once you give yourself the option, when you inevitably do hurt someone, of simply sitting with that discomfort--bearing it courageously and uncomplainingly--you naturally lose some of the fear of being wrong. When you are wrong, and when people are strong enough to simply tell you that something you did hurt them, you have an opportunity to reflect and grow. Rather than an impossible and frustrating search for the right words, which seem to change with every season, you need only focus on listening to what people are telling you about the way that you interact with them. If you are a person who thinks of yourself as "good" or "considerate" or any of those words, then the evidence for or against that claim is not your adherence to any objective set of rules about what to say or not-say; it's the way others feel when you interact with them. That's an ongoing thing, way beyond any single interaction or faux pas, and the more time you spend with someone the more your behavior will reveal what's in your heart, regardless of the words you use.
Social system design plays a huge role in this dynamic. Look at a system like Twitter, which feels like an echoey stadium full of people shouting at each other. Where is the opportunity for connection there, for starting somewhere, wrong or right, and slowly building a relationship in a humane way, acknowledging fallibility and error but upholding respect and care? Twitter's social position is what makes it that way. Because Twitter is designed to be like speed-dating everyone in a football stadium while playing football with them and not being able to see your own or anyone else's uniform, the behaviors that succeed in gaining positive attention there do not include thoughtfulness and respect. If the design was different, different behaviors would succeed in gaining positive attention. And it's not very useful to apportion blame separately for each facet of the awfulness that arises from such a situation; to say that this toxic person is the problem, or that software-writer created the situation, or the other executive is responsible for the condition. While those things are true of any individual case, the problem, and solution, are systemic, not personal. When you have a system that is enabled and funded in the way that Twitter is enabled and funded, and the opportunity to build it is distributed according to the logic that guides who gets hired at Twitter, and when Twitter-the-public-service is made available to the set of people to whom Twitter is available, Twitter is what you get. If you want something different, you don't just keep replacing the humans who prove themselves unequal to the emotional, intellectual, and humanitarian demands of that system; you recognize that the system is the problem, and you direct your energy toward changing it or building a new one.
This topic has been on my mind especially for the last few weeks, because I'm starting to face decisions about exactly how the social media system I'm designing should work. What elements of system design promote interactions with respect and care? What elements tend to humanize rather than dehumanize? I've shared some of my ideas in other posts, and I'll continue to share them as I'm able. If you have ideas, I'd love to hear them.
and many other encounters with different sorts of imbalances. ↩︎
That is, what I'm saying relates to the particular Western humanist tradition with which I'm familiar and maybe not to other humanist traditions. ↩︎
Words are part of it, obviously. If you say the wrong thing you may have made a mistake; if you deliberately or recklessly say the wrong thing, then you are probably communicating clearly. ↩︎