GUEST COLUMNIST: Writing is a challenge. A Down’s syndrome child is about acceptance
By Maura Adshead

WHEN you write in a university, you plan your work in months.

A colleague and I are planning a book. We think we know what we want to say, we think we know what the main arguments will be, and we think that if we crack on with it over the summer, there’s a chance it could be written by Christmas.

We know, though, even as we say it, that this is optimistic and probably delusional. Experience tells us that when we put our ideas on paper, and as we work through them and the arguments, the book will probably take a year.

So, then, imagine the terror that someone like this feels when asked to write for a newspaper. You seriously expect me to marshall my thoughts and put them into some kind of intelligible form — in days? It is a terrifying challenge. So, obviously, I said yes. I’m getting on in years and am worried about what bungee jumping might do to my back. Writing for a newspaper seems safer and encapsulates more or less the same emotional range.

All you need to do is find something that you know about, preferably that someone might be interested in reading about, and then write about it in a clear and interesting way.

But I teach Irish politics and policy-making — so that’s just not going to work. Himself says ‘I suppose you can write about the referendum?’ ‘Naah’, I said; ‘I’m saving that for next week: I thought, this week, I’d write about having a baby with Down syndrome. That’s interesting and funny, and its something that I know about’.

He was sceptical about whether this was a good idea, and having listened to his cautionary advice, I thought I’d proceed anyway. That’s two things explained: one is how my relationship works; and the other is how I managed an unlikely introduction to what I wanted to write about.

Now, the only difficulty is choosing which stories to tell and which I must keep: there are so many funny stories that it’s hard to know which to share.

The birth. I was a bit nervous of this: what new mother isn’t? So, I’d read everything I could to prepare. Har har har. I’d heard that babies may be born blue; that they may sometimes be born with downy hair over their bodies; and that sometimes their heads are slightly misshapen after birth. I was prepared for a blue, hairy, pointy-headed baby. What a pleasant surprise, then, when they passed over the good-looking auburn one with a tan (I hadn’t read enough to know the symptoms of jaundice). It was another surprise when they just as quickly whisked away my baby for a ‘chromosome test’. A bit weary and sub-vocal after the birth ordeal, I remember thinking ‘but even I can tell she’s a girl — do they test for transvestism now?’

So began the 24-hour crash course in Down’s syndrome, which obviously required a few more books. The consultant giving us the news, seeing that we were practical about it, suggested that ‘farmers and agricultural workers tend to do better with this than people like you’.

They have, he said, a better appreciation of natural things and an acceptance of what nature brings. So began the first of a few challenges: to be as good as a farmer; and to be as good as you’d expect and want yourself to be.

‘Well, you do hippy, lefty liberal’ — I remember saying to myself — ‘you’ve talked the talk enough, now it’s time to walk the walk’. Because, at the start, that’s how you confront this kind of disability. You think of it as a great challenge. Something that you must overcome.

With more experience and hindsight, however, I now see that the experience of being challenged and having to overcome is more or less universal to all new parents. The big difference is that they don’t get a team of experts to help. When my second child was born and I was sent home, normally, with my new baby, I remember sitting sulkily and thinking ‘but where’s the team — you can’t expect me to do this by myself?’ (For clarity, there was, of course, the child’s father, and associated grandparents and family, but you have to understand that I was expecting some higher order of professional expertise).

But back to the ‘challenge’ of intellectual disability. For most people, who don’t have experience of them, intellectual disabilities are scary. I think this is because without understanding, we lack empathy. I’m not saying that everyone understands physical disability, but at least a lot of us think that we do.

If you close your eyes, it’s possible to imagine what it might be like being blind. If you push a buggy around an office, it’s possible to imagine the obstacles encountered using a wheelchair. Now imagine walking in circles and flapping your arms. Unless you’re at a family party and the birdy song is playing, you can’t do it, can you? The problem you’re having is trying to understand what’s going on. That’s the lack of empathy I’m talking about. Because once you can’t imagine doing it yourself, it becomes much harder to understand the person you’re looking at.

Yet how many people do you remember from school who stuck out their tongue when they were concentrating on writing or drawing? How many people do you know who whistle when they’re content in the garden? Or sing in the shower? Or bite their nails? (if your pet kept biting its nails, you’d take it to the vet). What’s the difference?

Nothing much in terms of behaviour, but a great deal in terms of your perceptions of it.

Once you know, however, that walking in a circle and arm-flapping is the nonchalant activity of an imaginative and content child at play, it’s not that disturbing any more.

So the irony is that the ‘big challenge’ of intellectual disability is not to see every little thing as a big challenge. It takes a while to learn this, but not everyone needs to learn the hard way. If you recall the last day you spent time with someone you care a lot about, ask yourself: what did you do? If you watched a movie, or had a nice meal, or laughed at their impersonations of someone else you both know, or simply caught up on the latest ‘scandal’ — then you’d admit that these are not pursuits that require a huge amount of intellect.

Fair enough, intellectual capacity is good for building bridges and discussing referendums and a variety of other important tasks: but possessing it is not the life skill that will make you happy. For that, you need to enjoy your friends and family, love someone who loves you, and do the simple stuff we all enjoy.

That’s what my daughter has taught me and it’s one of the most important things I’ve ever learned. You probably won’t read my proposed book and I doubt you’ll be any worse off for missing it. But knowing what’s really important — that’s a serious lesson that we all should learn.

* Maura Adshead is head of politics and public administration at the University of Limerick


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