Language, Disability and the Mashed Potato Mountain

Photo of Devil's Tower, Wyoming at night, from the film Close Encounters of the Third Kind

I have been thinking a lot lately about "person first" and "disability first" approaches to referring to disability and disabled people. I'm going to use this blog post to work through my thoughts on the subject. The following is what I think this is all about. I could be wrong, and I would be happy to hear from others who have different thoughts.

For a long time, (not sure how long,) saying "person with a disability" (person first language) was almost universally understood to be the progressive, social model way of talking about disability. It was the formulation advocated and taught by disabled people, (people with disabilities), to non-disabled people who inappropriately called us "disabled people," "handicapped," or "differently-abled." This is what I picked up in the early 1990s, when I was making the transition from someone who happened to be disabled into being a conscious part of the disability community. I was waking up to my disability identity and part of that was using "person first" language.

Fast forward to now, or maybe 2 to 5 years ago, and there is a pretty energetic counter-movement within the disability community towards saying "disabled person," and viewing "person first" language as an ableist, medical-model imposition by non-disabled people who are all too eager to "able-splain" our disability experiences to us. A lot of disabled people, myself included, maintain an uneasy tolerance for both approaches. We're not quite ready to condemn the formulation outright. But although we say it's a personal choice, it feels like there is an unspoken implication floating around out there that people who still use "person first" are uncool, maybe a little self-hating, and certainly misinformed.

As it was explained to me, the reasoning behind "person first" language is to emphasize our personhood, and more significantly, to assert that disabilities are merely characteristics, not defining qualities or end-state outcomes. Disabilities are "things" that we "have", not what or where we are. There is supposed to be some sort of comfort in that, a way of shrugging off disability as "nothing but a thing" ... not anything that means anything beyond dry practicalities.

The rationale for switching back to "identity first," as I understand it, is that "person first" seems to "protest too much." It feels a bit too eager to argue our personhood when our personhood should be beyond repeated linguistic justification. Also, many of us do feel that we are at least partially defined by our disabilities. Some disabilities are much more integrated into a person's life than others. An amputee may reasonably feel that his or her disability really is separate, almost incidental, and external to him or herself. That's harder to believe if you have cerebral palsy, quadriplegia, or autism, which have with physical and social effects that permeate pretty much every part of your life. And living your whole life with disabilities makes it even less sensible to believe in the separateness or insignificance of disabilities. Finally, many of us maintain that "disabled person" underscores the ways that we are "disabled" by an ableist society, which is a key concept of the social model of disability.

I have mostly switched to using "identity first" language when referring to myself. On the one hand, I came of age in the disability community at a time when "person first" was the way to go. So, I don't feel any ill-will about it, and I think there are good arguments in favor of using "person first."

On the other hand, I have come to feel instinctively that my disabilities are woven deep into the fabric of my life and personality. I no longer see my disabilities as some kind of add-on or baggage I carry with me. I am a disabled person. At the same time, saying that doesn't make me feel the least bit bad or "less than," any more than saying I was gay, if I was gay, or black, if I was black, or a woman, if I was a woman. It's an identity that includes certain physical experiences and social disadvantages, but it's part of me, so there it is.

Which leads me to think that maybe "person first" and "identity first" are also markers of where a person is in his or her journey with disability. Maybe "person first" really does make sense for people still working on how they relate to their disabilities. Maybe "identity first" signals a kind of final or maybe intermediate peace or equilibrium with disability. Again, that sounds a lot like a value judgment, but I really, honestly don't mean it to be. As I said before, some kinds of disabilities really are more external and can be kept at arms length and it works fine, while other disabilities make that stance almost nonsensical. So that's another factor.

One thing is absolutely clear. All of this matters. Language discussions like this should probably be less contentious than they often are, but they're not pointless. Like the guy building the mashed potato mountain in Close Encounters said, "This means something. This is important."