Ok, that’s not strictly true. I’d much prefer it if you called her by her name please. If you’re not sure what it is, ask her.
What I mean is that I no longer waste enormous amounts of my own emotional energy on this. I no longer get that punched in the gut feeling when I hear it. Or at least I’m trying not to.
Person First Language
The Down syndrome community generally prefer the use of person first language. That is to say “a person with Down syndrome” instead of “a Down syndrome person”.
The idea is to acknowledge the person before the disability, to not define the person by their diagnosis.
When Scarlett was just a couple of weeks old a midwife phoned me “I hear it’s a Downs baby” she said. I was devastated, most new mums receive “congratulations! It’s a girl”, but to this midwife “it” was simply “a Downs baby”. From her tone I knew she considered that a tragedy, there were no congratulations for me.
This experience and many more like it drove me to loudly demand that person first language should be used at all times and every single time my daughter was referred to as “Downs baby” or a “Downs girl” my heart broke.
Identity First Language
The Autistic community generally prefer the use of identity first language. That is to say a person “is autistic” or to refer to “autistic people”.
I tread carefully as I discuss this as I am not autistic but autistic friends or parents of autistic children often say that they do not consider autism to be separate to them, that it’s not just something they “have”, rather it’s an important part of their identity that they feel proud of.
As time goes on I feel increasingly aligned to this way of thinking. I don’t see Down syndrome as something that Scarlett simply “has” like a broken leg or like a hair or eye colour. It’s deeper than that. Down syndrome is in every single cell of her body. It is woven into everything from how she communicates to how she looks to how she understands the world. Take the Down syndrome away and I’d have a different child. And I most certainly would not want a different child.
Why the difference in outlook
The journey begins differently for people with Ds compared to autistic people.
If your baby has Down syndrome you learn this either before your baby is born or shortly after birth. People often chose to terminate their babies with Down syndrome and the response to the diagnosis either pre or post birth from the medical profession is on the whole negative.
As new parents we are thrown into this world and immediately forced to defends our child’s very existence. We are asked questions such as “didn’t you have the test then?” and spoken to as though the birth of our baby is a sad, avoidable event. Mothers are told “I’m sorry” before they’ve even got off the delivery table.
Our babies have not yet developed their little personalities, we haven’t had a chance to get to know them yet. No wonder we feel compelled to put some separation between a diagnosis which is seen so negatively and the tiny humans we love so much.
An autism diagnosis happens a little differently, a year or two after birth, later in childhood or even as adults. Sometimes more gradually, sometimes it’s a shock and sometimes it has to be fought for and comes as a relief to finally have it recognised. There isn’t a prenatal test for autism. Yet.
I’m in no way saying one experience is easier than the other, both journeys come with the most wonderful highs and challenges that only those in the SEND community can understand. But there is a difference and I suspect that, at least partly, explains the differing views on language.
It’s also about grammar
A key point which I think is often overlooked in this seemingly never ending debate between person first and identity first language is grammar.
While the autistic community prefer “autistic person”, the phrase “autism person” would never be used.
We would never say “autism girl” or that someone “IS autism” in the way people sometimes say “Down syndrome person” or that someone “IS Downs”
Autism is a noun.
Autistic is the adjective to that noun.
Down syndrome is a noun.
There is no adjective for Down syndrome.
If there was an acceptable adjective for Down syndrome, I can’t help thinking much of this would at least be a little easier.
It’s a personal choice, try to respect it
While my feelings about person first vs identity first has shifted over time along with how I understand my daughters diagnosis and how it shapes her & us as a family one view has remained constant throughout:
If you know a person’s name, use it. If you don’t know it, ask.
If you are referring to a person and need to describe them try “the girl in the red dress” or “the girl that goes to dance class” rather than always defining by their disability and nothing else. You know, a bit like you do for other people.
And if you are a medical professional or need to refer to particular groups of people with the same or similar diagnosis, take some time to learn what their preference it.
For me, I no longer waste emotional energy on this. I’m a busy mum of two very active girls and, honestly, I don’t have the time to spend arguing with strangers about the language they chose to use.
These days If you call my girl “a downs girl” I roll my eyes, chuckle at your lack of good grammar and get on with my day and I feel a hell of a lot better for it.