I came across a link to this article in my FB newsfeed earlier this evening, and it’s got me thinking about a lot of things.
The first thing I want to say – and I’ve had this on my mind and have been wanting to write about it for some time – is that I’ve moved beyond feeling, and insisting to the world, that Down syndrome doesn’t define Finn. You know what? Down syndrome absolutely does define him. Down syndrome and the particular ways it manifests in him shape so much about him: it shapes how he experiences the world, it shapes how the world experiences him, and to a very large extent – possibly to a greater extent than any other single thing – Down syndrome will influence and even dictate the path his life takes. So, to continue to say that Down syndrome doesn’t define him is both an untruth and a disservice to him and to all people with Down syndrome. It’s a disservice because it’s dismissive (by and large by those of us who do not have Down syndrome) of his experience and his identity, and moreover, it relegates Down syndrome to something that is negative and undesirable. We would never insist that someone is not defined by something that we see as positive (he’s not defined by his wisdom; she isn’t defined by her compassion); we only say this about traits that we perceive as negative, and we say that a person isn’t defined by things we see as negative as a way to try to diminish their impact on the person in question, and really, their impact on us, because those things make us (the people who do not have those particular undesirable traits) uncomfortable.
I’ve begun talking to Finn about Down syndrome. At this point, I really don’t think he has any understanding of what Down syndrome is, or even how it pertains to him, except that he is aware that he looks like other people with Ds; when he sees pictures of other kids with Ds, he’ll point to them and say “Finn! That’s Finnian!” In any case, I want to instill in him from this young age that he has Down syndrome, and that he should feel good about it. He should own it, damn it. I never want him to perceive Down syndrome as something negative, something he wishes he didn’t have. I never want any of my kids to wish they weren’t who they are.
So, this leads me to the People First Language issue. I admit that I’m wrestling with it. Amy Sequenzia makes some excellent points in her article (if you didn’t click on the link above, go read it now: People First Language and Ableism), but I feel like some nuances are overlooked.
I still tend to use PFL and appreciate when others do – unless told otherwise by directly affected people (for instance, I am now very aware that autistic people prefer to be called “autistic” and not “people with autism”; I respect this, and therefore have made that change in the way I talk about autism) – where it pertains to Finn. There are a few reasons for this: first of all, although I do not see Down syndrome as negative or undesirable, and I accept and even embrace that Down syndrome does, in fact, define him, I’d still like to think that our shared humanity is the thread that binds us all together, and what separates us from other beasts. Maybe this is a Pollyanna-ish view, I don’t know. In my mind, it’s not that I don’t want people to see his Down syndrome, or that I want to attempt to diminish its impact on him, it’s more like this: if you can see his humanity and see how his humanity relates to your humanity, then hopefully you can see him with compassion – not pity or disdain – and hopefully you can see that he is a whole, complex human being, and not a subhuman defect.
There is also the problem of word usage and how awkward it can be. I’m talking about grammar, I guess. See, while autism has an adjective equivalent (autistic), Down syndrome does not. So when someone says, “He’s Downs,” or “the Downs kid,” it grates on the ear (at least mine) because “Downs” is not an adjective. Plus, I guess I have somewhat of a problem with using the name of the guy who believed and promoted the notion that people with Down syndrome were actually an entirely different species – a sort of subhuman species that had manifested from some sort of reverse evolution – to identify my kid. Yes, I still use the term “Down syndrome” to describe my son even though I’m not a huge fan of Dr. John Langdon Down’s ideas, but only because it’s the term that most people are familiar with. If you say, “Trisomy-21,” most people have no idea what you’re talking about.
Anyhow, so there is no adjective version of Ds or T-21 that I’m aware of that would make “_______ person” sound right, from a linguistic standpoint. Ds isn’t the only disability like this; what about cerebral palsy? Would you say, “she’s cerebral palsy,” or “the cerebral palsy man”? Or pretty much any “syndrome.” How about Williams syndrome or Fragile X syndrome or Prader-Willi syndrome? None of those have adjective equivalents, so it’s just awkward to use them as adjectives.
So, let’s just say “disabled” then. I can get on board with that, except that it’s just such a negative word. I mean, if you disable a smoke alarm or a machine or a bomb, you render it inoperable. Are disabled people inoperable? Do they no longer “work”? No. And if you think about it, all of the most common “dis” words in the English language are negative: dismember, disenfranchise, disrespect. In fact, the dictionary defines the prefix dis as follows:
I wish we had a word that wasn’t itself so negative. “Differently-abled” doesn’t work, either, because in its insistence on focusing on ability, it’s ableist. So where does that leave us? I don’t know. I guess we’re stuck with “disabled” and all of its inaccurate and negative connotations.
Perhaps I’m splitting hairs over language and terminology, but I think all of these subtleties are worth contemplating. A big part of the problem is that, yes, it’s very often – probably almost always – people who are not disabled who are deciding the language that gets used. A lot of them, like me, are parents of children with one or another diagnosis – parents who do not themselves have those diagnoses. A lot of us are thrust into this world of disability, and we’re trying very hard to be advocates for our children, and, yeah, we fuck up along the way. Speaking for myself, having Finn was my first ever experience with disability. When he was born, I didn’t know Down syndrome or disability from my ass. God, some of the things I thought and said and felt in the beginning truly make me cringe now. But there was never a single moment when I did not love my son fiercely, and all along I’ve tried to advocate for him and for the larger disability community. I heard and read things over the years that resonated with me and made perfect sense to me – like People First Language.
Advocacy changes; the language that we accepted a few years ago is now offensive, so now we advocate for new language. That language will one day also be offensive, because it will be misappropriated and turned into slurs, or it will take on new ableist connotations. Hot button issues of today will be replaced with hot-button issues of tomorrow – perhaps issues that we can’t even conceive of today.
So, what I’m getting at is that it’s just not so cut and dried. Being an advocate and a true ally is an ongoing, lifelong process of listening, reflection, introspection, contemplation, and growth.