Phoenix with her friends.

What Person-First Language Can Miss About Disability and Identity

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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.

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In much the same way as frost sticks to the windshield of your car in the winter, negativity can find a way to latch on to you, whether you like it or not, if you spend an inordinate amount of time surrounded by it. In the first three years of our son Rukai’s life – hell, preceding the first three, go back to “in utero” – down to all the medical guesswork and gleeful tick-boxing we were dealing with, there was little which didn’t fill my heart with sorrow, didn’t strangle my thoughts with worry. That fear, that negativity was like an overgrown ivy, and as such it led to poor health for us as his parents. A poor mental state, even poorer vision and all too often a lack of perspective.

It’s awfully hard to use peripheral vision from within a chasm.

Whereas some parts of society would have you believe that it is our child, born with Down syndrome, who was doing the suffering across those years, it was actually us, as his parents, in anguish – not from Rukai, he was a joy – but from having to fend off society and bad medicine perpetually marginalizing our beloved son. From all those conversations centered on “what he can’t do,” where we’d consistently be responding “the hell he can’t, shut up and watch him.”

It’s exhausting to have to fight all the time. And horrifying that at some point you actually tip over and get used to the challenge. Like a broken record, you find a “party line” that explains why statistics don’t define a life. We landed on something like:

A story not yet written cannot be told – particularly one which you do not own.

It was all so bleak. We were all so fearful. And I was entirely too angry. But that was then and this is now.

Much the same as a blast of garden hose clears out the muddle between paving slabs, in the winter of 2014 we enrolled Rukai into a nursery aptly named Sunshine. And these people could not have been more polar opposite to those eternally dark-minded, interfering medical professionals. Not only did they listen to me, but they listened to Rukai.

They watched what he could do, then they said “OK, what next? How do we go onward and upward from here?” And so too did Rukai, onward, upward. No labels. No negativity, just progress.

We went from medicine to education. From darkness to light. From fear to joy. From negative to positive.

And there, you have it:

Medicine searches for problems and seeks to correct a person’s disability. Education searches for potential and seeks to unlock a person’s possibility. I know where I want to spend my time.

And that Sunshine? Well, it was the very bridge from the one to the other. And just like that, I am not so angry now. Because now, we are here. Always moving. Relentless forward progress. Slowly but surely we arrived.

Maybe I’m too tired to be so angry. World-weary, it was recently said. Physically exhausted. Mentally used up. I’m looking at the calendar ticking off the final days in this year of amazing physical challenges that included hundreds of training miles run and two marathons. I’ve no idea where the mental tenacity required to get through one of those races came from, let alone two.

Then again, maybe I do…

When Rukai started primary school in September I knew things would be good in “big school,” but I had no idea just how good. A head teacher with practical experience of Down’s syndrome. A ridiculously inclusive school with the most amazing staff. And full time one-to-one support has meant Rukai has enough guidance to help him engage with the other children while progressing in his learning at his own pace. His support person knows Makaton sign language is an amazing blessing. Knowing she “gets” him is making me cry as I type this. I could not have possibly asked for more.

Yet, still I got more.

Earlier this week, I was able to watch him in his first school Nativity play, the incredibly sweet “Born in a Barn.” He stood (and sat and stood and sat) with all his peers, participating in his currently unspoken way, yet bursting with communication via Makaton signing. And he signs like a boss.

I wept to see him doing so much more than I was led to believe he would be able, from way back in that frozen hospital room as I tightened my arms around him to protect him from those equally cold, white-coated bringers of misery who stood before us. I expect to see him do amazing things now, but that doesn’t make it less moving; probably quite the opposite. Every milestone is Everest.

That is my son up there.

My son. My sunshine. My Rukai, in his school play. Included completely.

And the play ended. And they all stood. And in unison, they began to sing “We Wish You A Merry Christmas.” But they weren’t just singing… they were signing. They were all signing. Every last one.

By then, this hard, old, world-weary mom was weeping herself dry.

You see, I also cry when I’m angry. But I’m not so angry anymore.

It’s a long way on a donkey.

“It’s a long way on a donkey

It’s a long way to go

It’s a long way on a donkey

It’s a long and winding road.”

– From “Born in a Barn”

Follow this journey on Down in Front Please.

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