Today is Day 14 of 31 for 21, a blogging effort to promote awareness of Trisomy 21.
When my husband was telling his parents the news that our new baby had Trisomy 21, he made some kind of comment like ‘he’s a Down syndrome baby’. I really try not to interrupt his private conversations but this bothered me so much that I had to comment, and I loudly whispered to him, “He’s not a Down syndrome baby, he’s our baby with Down syndrome'”.
Does that sound like I was reacting to silly semantics? To me it didn’t feel like that. I felt the terminology was presenting our baby as a problem and was impersonalizing who he was (obviously this wasn’t dh’s intention). You don’t define a person by what is wrong with them. You don’t call an infant with strep a ‘strep baby’ – because that’s not accurate. You don’t call a toddler with leukemia a ‘cancer child’. You don’t call an adult a ‘heart disease man’. It’s really obvious when you use those examples how ridiculous it sounds.
And yet when it comes to T21, it’s normal for people to say things like, “he’s a Down syndrome boy” or “she is a Downs”. No, no, no. Just tonight I was speaking to someone on the phone who kept telling me about different people she knew with links to Down syndrome and saying things like, “Her daughter was Downs” until I felt like I had to say something. I know that people don’t mean to be offensive or hurtful, but there’s a much more appropriate and less demeaning way to refer to others. There’s a huge difference between referring to somone with T21 as someone who has Down syndrome, or someone who IS Down syndrome. A few days after my whispered comments to dh, I learned that it even has a name: people first language.
People first language means that when you speak about a person, you first speak about them followed by a mention of their disability or ‘issue’ – who they are is their primary defining characteristic, and their disability is just one aspect of who they are. It’s true that it’s a bit more wordy to say ‘a baby with Down syndrome’ instead of a ‘Downs baby’. But our words shape perceptions and reflect our understandings. Isn’t it worth a couple more syllables when we speak to focus on seeing people for who they are rather than what they have?
Avivah
I strongly agree with you on this. Our words are powerful and directly link to what we feel and believe. I’ve been blessed since I was very young with a number of friends with a variety of ” differences” and perceived “disabilities” my gut reaction has always been similar you yours at your husbands reference to your youngest child. Role modeling your sensativity to language choices is very powerful, your family and friends and an ever increasing circle of others will benifit greatly from your intentional verbal decisions which will extend out beyond your child to eventually include your entire human family . Blessings upon you and yours!
When Mendy was first diagnosed I refused to call him “autistic” – I said “he has autism.” Eventually I got lazy though. So yes, I agree with you that it’s definitely more proper and feels better to put the baby first and disability second. (HUGS)
I am totally with you on the issue of putting people first. And in an indeal world, we would all have the time and the patience and the knowledge and the curiosity and any number of other qualities to see each individual purely as that – an individual – without any need for labels or mental and verbal shorthand.
That is not how we (human beings) operate though. We need labels and shorthand to help us make sense of things. I think of it in terms of letters and words – we need to learn the individual letters in order to be able to read; once we have mastered this skill, though, we then do not see the text on page or screen as a jumble of unconnected letters; we see the meaning of the words they have been joined to form.
Therefore, saying someone is “autistic” (an example I am using because my daughter has a diagnosis of an ASD) is problematic if the speaker is assuming that this is all there is to the “autistic” person – if they are denying them as an individual and reducing them to their diagnosis. However, I find that saying “she has autism” can be equally problematic if this “autism” label is used to denote a “fault” or “disability” – if it is, in other words, saying “she has something wrong with her”. Because I do not believe that to be the case at all – I believe that autism is simply a particular personality type, with as many percieved “positives” as there are “negatives” (and how personal and subjective are those two terms, too – who decides what is positive and what is negative ?).
So….. The jury is out here in terms of terminology, I’m afraid. Is it any better to say that person is “blue eyed” or that they “have blue eyes” ? Whatever the answer to that question is, then that’s the form that should be used whenever referring to a “syndrome” that is a part of who a person IS, as opposed to something that is a “disease” (like asthma or heart disease) or a disability (like cerebral palsy or spina bifida).
Just my opinion though 🙂 I always make an attempt to use the terminology that an individual is comfortable with and would not dream of telling them that they are wrong in preferring it – I just do not wish to be misunderstood or found dismissive or disrespectful because I prefer a different one !
For instance, if I was talking to you, Avivah, about your son, I would refer to him as a “baby with Trisomy 21” because it seems to me, through your usage in your blog posts, that this is the form that you prefer to “Down’s Sydrome” – or am I just reading too much into it ? 😉
Allegra, autism has many forms, and yes it can be a disability and a debilitating one at that… sorry… my son has it pretty bad, so it’s not a ‘type of personality’ for us, it’s a disability that’s preventing him from doing things that neurotypical children do.
In which case, I can see why the “he has autism” form would be far preferable for you !
Don’t get me wrong, though – life for us can be (and often is) hell, despite the fact that DD is very “high functioning”. This might sound like a cop out (it’s not us, it’s everyone else !) but the problems that we have are more often than not caused by other people’s lack of understanding and the fact that the world is geared towards NTs. Those that aren’t are often caused by poor diet (the whole sensory issues thing means that she sometimes eats appallingly badly, or does not eat at all). And yes, my DD can not do many of the things that NT children can…. But she can also do many things that NT children can’t.
I sometimes get annoyed by the books and articles that present the whole ASD issue in a rosy light…. Because it really isn’t. And I am sorry if I came across like that. But – for us – I still prefer “she is autistic”. Because if all the debilitating problems that so often go hand-in-hand with the condition were to disappear, she’d still be who she is now, and she’d still think in a unique and unusual way that would set her apart from the norm. That is why I feel the way I feel… Or, perhaps, to word it differently – a lot of the problems associated with the autism can be, with a lot of hard work and a bit of luck, removed – skills can be learnt, coping techniques devised (to what extent, it depends on the individual, of course) – but the autistic personality, the unusual wiring of the brain – that will never go. It’s who you are, not what you have. Hence, my DD is autistic, but she suffers from many of the problems associated with autism. Some of these problems can be tackled, some can’t – but autism can’t – and shouldn’t need to – be “cured”.
As usual You are so right! I could not have said it better myself!
I am glad you brought this to my attention.