I’ve really enjoyed all the feedback and support in response to these blogs – it’s especially rewarding to hear from other parents who have been inspired to have birthday parties for their children (with peers, not just family) – or to start Facebook pages for them to keep in touch with people.
But I’ve also had enough feedback of the “I never know what to say” and ‘I’m terrified of saying the wrong thing” variety to make me reflect I may have done a bit of moaning and finger pointing about words and how they can be so annoying, without really offering any advice as to what the “right” thing to say might be.
That’s because I don’t know.
People who know me know I’m far more likely than most people to blurt out the “wrong” thing because it just occurred to me and I can be a bit impulsive.
But we can only ever judge people on their intentions.
Someone who is charming but vicious is a far more dangerous prospect than someone who drops some clangers with the best will in the world.
Sweetness and light with a motive of glory or revenge ain’t so sweet.
However the vast majority of us are just humans blundering along and trying to do so amiably.
So I despair at the thought that some of the nicest and most sincere people I know – (the sort of people who have made a point of contacting me to tell me they enjoy this blog) are also feeling desperate about potentially saying something “wrong”.
It’s unfair to judge the well intentioned harshly but I don’t think people do;
we parents have far more pressing wrongs to right.
All I can offer is that in my experience, and that of some of my friends – sometimes the worst things are not actually said.
The very worst thing not actually said is when I tell people my daughter is intellectually disabled and I just get the head-on-the-side “ohhhhhhh” which shows me they pity me – and also they are patronizing and my life feels utterly diminished by them.
Those are the people who leave you feeling like crap.
Another thing not actually said sometimes is “hello” to our children. And that can offend.
I have a feisty friend who was parent for five precious years to a beautiful boy and she was enraged by the numbers of visitors, health professionals and “advocates” to her home who didn’t even acknowledge him in the room.
She would actually halt things, invite them to look at him and say “hello” before proceeding.
I think of her, and him, when I notice people ignoring Claudia.
Talking around or over people happens to many of us; the physically disabled, the elderly, the very young as well as the intellectually disabled.
My Mother, bless her, still sometimes asks me if Claudia would like a drink or something to eat. And I hear myself snapping “I don’t know – ASK HER!”
But these are niceties and don’t always work.
Claudia will say “yes” to anything my Mother offers her – and if I give her a choice of two things (peanut butter or jam? jam or vegemite? vegemite or peanut butter?) she will without fail, choose the last thing I said.
Some people try so hard to do the “right” thing – and it backfires.
On one occasion we were in hospital – waiting for assessment – and a young registrar came in, clearly didn’t read the top of his notes, didn’t look at her at all and just said “So Claudia, where is the pain?”
I waited a beat then said “well, I think it’s-”
“now now Mother!” he cut me off “ it’s important you let her speak for herself!”
So I duly shut up and sat in slightly smug silence as he very slowly realized she was not only deeply asleep but also intellectually disabled and he coughed and shuffled her notes, read them more carefully, and then with a flaming red face asked me if I could shed any light on her condition.
Not just the presenting one.
Which just goes to show that nothing is simple, “rules” depend and flexibility matters.
But I digress.
I think how to respond is a potential mine-field because of the variety of ways we families feel about it.
For instance, being told someone has been diagnosed with a terminal condition is pretty much bad news and we all respond accordingly.
Being told someone has been diagnosed, after years of questions and pain, with something easy to treat and is finally recovering is generally good news – and that’s how we all respond.
But it’s hard to know which side of the ledger to come down on in response to news there is a diagnoses of intellectual disability.
Some families may be shocked and devastated – some may feel truly blessed and privileged, or maybe all of those things.
There will be a variety of responses because we are people.
We are just human beings who may or may not feel the way you may-
who may or may not appreciate you giving us an emotional response which reflects only how you would respond or how you think we may respond
and is therefore charged with the potential for pity, platitudes, and patronizing problems!
So I guess the best response is going to be one which is emotionally neutral.
In New Zealand there is a group called People First – a self advocacy group which formed out of Idea Services. The self advocacy movement is worldwide and so is the intention of the name.
Round table discussions on how to define themselves led to someone rightly pointing out they were not a bunch of characteristics, not a group of diagnoses – they were first and foremost human beings.
They were – and are People First.
They are not “A Downs” – nor are they “A Cerebral Palsy”, “A Special Needs” any more than they are “A Spastic” “A Retard” or “A Mongol”.
It’s a significant detail and if it matters to People First how they are defined, then it matters. No-one wants to be known as a condition first.
It’s saying “I have a grand-son who has special needs” instead of “I have a special needs grandson”
They are People first. They are people.
If that is your first response that’s probably the right one.
Acknowledge the person, if they are there. They are a person.
If they’re not there, still acknowledge them. Because they’re a person.
I find “how is she doing?” is a benign and friendly way of asking about her and our life without implying how I should feel about it.
I enjoy hearing about other people you know who might be having similar experiences.
“I have a cousin who has Down Syndrome – she’s 13 and just loving High School!”
It reminds me that disability is everywhere and its something we have in common.
That and being human.
Because they’re not “ A Downs” – they are a person who has Down Syndrome – who may also have green eyes, numerous certificates for swimming, a wicked sense of humor, every Julie Andrews movie and a growing collection of original poems.
They’re a person. They’re human. With hopes and challenges, needs and aspirations.
Just like the rest of us. We are people. First.