I was on my way to Tesco the other day with Sam, when somebody stopped me, and reminded me of how cross I used to be, pretty much all the time. Sam likes to make me walk on the other side of the road to him (I don’t think he’s embarrassed by me – yet – after all, I don’t ‘cooee’ or anything , he just likes to stretch the apron strings a little bit at a time), and the sight of a medium-sized child with Down Syndrome out on his own in the late afternoon/early evening caused a passer-by to do a double take.
I always notice when someone stares at my son. When he was little he was so utterly gorgeous (fluffy red hair, long eyelashes, flirty eye contact and captivating grin) that I accepted people’s admiring glances as nothing more than his, and my right, but as he’s grown older, and his Down Syndrome has become more noticeable, the stares have become less admiring, more curious and longer in general. It doesn’t happen here, in our home town, too much, I have to say, and when it does, it’s usually from little ones, who are easily reassured by the big smile from me; I think it’s in part because Sam is so well known round here. We walk everywhere, we shop locally in our disorganised fashion, he went, and goes to a local school. But this stare was different.
It wasn’t like the old lady in Sidmouth who goggled at him in such a way that her head nearly screwed off her neck. I was tempted to ask if she’d never seen anyone with red hair before. Maybe it was because Sam was dragging far behind the rest of us, kicking at stones and generally moaning about having to walk instead of riding in the car. I hope it was, because even though Down Syndrome is getting rarer and rarer, he’s hardly a unicorn. Maybe old ladies in Sidmouth are richer than most people and that gives them a license to be rude, I don’t know.
No, the way that this man stared at Sam had my hackles raised in an instant. I’m a distrustful sort where my children are concerned, I freely admit, but there was something about the way he looked at my son, as if he was a monkey in a zoo, that put me on my guard. Even so, I was mildly surprised by his first comment to me. “Is he yours?” I’d love to have the chutzpah to answer, “No, I go for walks to Tesco all the time with random children,” but I didn’t. I have learned, over the years, to hold my tongue and give them a non-committal smile. Most people, after all, mean to be kind.
And I suppose it’s not completely unnatural for a man of his generation to question whether or not the child with Down Syndrome with me was my child or not. When I was on the maternity ward the question of adoption was raised,and dropped pretty damned quickly. It used to be far more common that parents would give away the children who didn’t measure up: put them in a home, hide them away, move on as quickly as possible. Even so, it would be easier, perhaps, if he was less of a small version of his father and looked a little more like me.
Something of my defensiveness must have communicated itself, though. Maybe I’m not as good at hiding what I think, after all. After thirteen years of fielding comments from the ubiquitous ‘did you know?’ (accompanied by sympathetic head-tilt) (yes, I ordered him from the ‘I want a more complicated life baby shop’ especially), through ‘Down’s children don’t get nits’ (why is that? Are you implying that he’s never going to have any friends?), and my own personal favourite, ‘He’ll always be with you’ (please, no!), maybe my non-committal smile was more of a gritted-teeth grimace. Whatever it was, he seemed to feel the need to reassure me.
‘You know what I think?’ he said. ‘They are angels. Angels sent from heaven.’ Oh purrrrleeeeeeease! Anyone who has spent any time in the company of my eldest son will know that he is no angel, disguise or otherwise. He has just as much capacity for devilment as anyone else. You should see the way he winds up his younger brother. I feel quite sorry for A sometimes.
And this idea that people with Down’s have ‘such capacity to love’, as if they are more loving than anyone else. I’ve got a theory about this one, and it’s got nothing to do with an extra chromosome. I mean, if you were stuck in a home, looked after by people who see you as a patient, where you are just one of many to be treated in your shift, you’d be pretty pleased when someone showed you a bit of loving attention, wouldn’t you? And I don’t for one moment think that those children who were placed in the sanatoriums of the past had a better time of it than the adults living in the Winterbourne home.
That’s one of the reasons I hate these kinds of comments. Sam may be an affectionate child, he may be trusting and impulsive, and many, many of the things he is may well fit into a stereotype. But by describing him this way, by putting the label before the person, by assuming that all ‘Down’s Syndrome’ children, or adults, come to that, are the same, we lock them away just as effectively as if we had put them in a dungeon and thrown away the key. In just the same way that I want freedom for my daughter to choose who she wants to be, what job she wants to do, how she wants to live her life, I want it for my sons. I want it for them, regardless of their chromosomes, X,Y or 21.
So don’t call my son an angel. Don’t assume that he won’t read, walk, talk, get a job, have a home, make successful adult relationships. Don’t assume anything. Don’t put my baby in a corner.