What Person-First Language Can Miss About Disability and Identity

Phoenix is my bright, funny and engaging daughter. She is 6 and attends our local school in first grade with the support of a 1:1 aid. It’s hard not to notice that Phoenix looks quite different from your average 6-year-old. Most people first notice that Phoenix has no hair. She has a condition called alopecia which causes her hair to stop growing. There is a good chance her alopecia is caused by the second thing you notice about Phoenix: she has Down syndrome.

Down syndrome changes everything about Phoenix’s life. At its core, it has changed/enhanced/added to every single cell in her body. It has affected her development. It has affected how her body grows and is shaped. It has created low tone that makes her bendy little body work so much harder than many other kids her age to walk, run, play, and speak. Down syndrome affects how other people perceive her and the expectations others have for her. Given how intimately Down syndrome affects Phoenix’s essential experience of being in the world, I have no problem saying that I believe Down syndrome defines her. I say this with acceptance, with love, with pride, and with understanding of the challenges her disability brings with it. So the narrative about person-first language from some parents in the Down syndrome community is perplexing to me.

See the person first.

Let’s deconstruct this message for a second. See the person first. See the person before the disability. If we are making a point to see the person first, the implication is that there must be something wrong with seeing the disability. With this narrative, the only possible reason we would put disability as a secondary quality is because there is something wrong, less than, inferior, or negative about disability. That somehow the disability can be set aside while we acknowledge the person, without the quality of disability, first.

Wait, what?

Parents have a unique place in the disability world. We aren’t disabled ourselves, but we care deeply and passionately about our disabled children. We have many different roles thrust upon us as we navigate medical systems, educational systems and social systems; we are parents, advocates and we are allies with the disability community.

Disabled writers, activists, bloggers and self advocates are raising their voices about the language used around disability. Many of these self advocates are saying they prefer identity-first language. That disability is a central part of who they are as people. That it is not a negative quality, and that as a society we need to change the way we talk about, treat, think about and acknowledge disability. That disability is a natural part of life and is not separate or secondary. Some people in the disability community are saying this narrative that we need to see the person first is damaging to the work they are doing, and perpetuates the idea that disability is a negative quality.

Parents have a responsibility to advocate for how we want our children to be referred to and spoken about. Parents can and should say “I don’t want you to refer to Phoenix as a ‘Down’s child.’ I prefer ‘child with Down syndrome.’” However, if we are respecting disabled voices, like we want others to respect our own children as they grow up, we must support their voices and support their perspectives. In my daughter’s case, adults with Down syndrome prefer person-first language. It’s as simple as that. But parents need to own their personal preference for person-first language, not adopt an ableist and misleading narrative that does nothing to further the standing of disabled people within society.

As allies with the disability community, I believe that regardless of whether we use person-first or identity-first language, we must get on board with the message that disability is a central and defining feature of a person’s identity. Disability is natural and it is beautiful. Disability is just one way that people are diverse and unique.

Having Down syndrome and alopecia are two very unique things about Phoenix. You cannot ignore them and you cannot set them aside. These qualities are not secondary. Phoenix is beautiful, unique and remarkable in part because she has Down syndrome, not despite having it.