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Kerry Fender by Kerry Fender Additional Needs

Kerry Fender

Kerry Fender

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

Growing up in the 1980s, I went to a Comprehensive school that was, to put it bluntly, feral. I was one of the library monitors, and so got to spend lunchtimes away from the war-zone of the yard, sheltering among the bookshelves. Many of the books in there were leftovers from the school’s former days of glory, when it was a Grammar School for Young Ladies.

Amongst this treasure trove of relics from the 1930s, 40s and 50s I found several books on etiquette, crisply worded hardbacks detailing the rules of good manners, behaviour and communication governing every conceivable situation a person could find themselves in (including when fast asleep in the privacy of your own bedroom. Did you know it’s rude to sleep with your mouth open? I can’t remember now if it said you should tie your gob shut like a corpse or not).

Well, it detailed almost every situation.

Nowhere amongst those starchy pages of instructions on how to address Archbishops, reigning Monarchs, tradesmen, and your fellow WI members did it once mention how to behave when meeting a Disabled person. Perhaps it never occurred to the authors that there was any need, after all, weren’t they all living in institutions or confined to their sick beds at home? Or perhaps, more reasonably, it was self-evident that people should simply treat them with the same tact, courtesy and consideration as they would any other of their neighbours, colleagues, fellow citizens?

It never occurred to me to notice this omission at the time – I was too young and callow, but a recent encounter while out walking in the woods with Freddie and my husband brought it to mind. If the behaviour of this couple, who, no doubt, consider themselves to be well-behaved, well-mannered and polite people, was typical of what is considered acceptable etiquette when meeting a Disabled person, then how would these books have worded the instructions that informed their behaviour (and that of others who act similarly – this encounter was not a once-in-a-lifetime incident)?

It would probably go something like this (it should be noted that my tongue is very firmly in my cheek here):

Chapter 35: Encounters with the Handicapped and Afflicted

1.  Imagine one is abroad for a relaxing stroll with one’s spouse in some bosky dell, when one espies a family approaching from the opposite direction. As they draw near it becomes apparent to you that the child of the family is afflicted by some malady as evidenced by the wearing of iron bars affixed to the legs by an arrangement of stout leather straps. As a meeting of the ways with these unfortunate people is now inevitable, what is the correct course of action to take? Under no circumstances should one make eye contact. This might result in their curse or misfortune being transferred to you. It is, however, perfectly acceptable to stare at the strange devices on the child’s legs.

2.  As you draw level with them (and still being careful to avoid eye contact) one should turn to one’s spouse and ask in a clear, well enunciated voice: ‘What are those things? Do they straighten the legs?’ The child himself is probably deaf and almost certainly mentally defective and will not understand your words at all, but the parents will feel flattered that you have taken an interest in him.

Seriously mate, if you meet us again, anywhere at all, next time just nod and smile, and don’t mention the legs, because I’ll tell you one thing for free about those devices – they don’t render him, or us, deaf. So, no matter whether your comments are directed at us, or are simply just about us, keep them to yourself and walk on by.

Go home and ask Dr. Google.

Some people say they wish others would ask questions about their children’s disability, they would welcome it as a chance to educate. I can’t imagine any situation more awkward than marching up to a stranger and asking ‘So, why does your kid wear those things on his legs?’

I don’t welcome random questions from strangers -- my son doesn’t need to have his differences commented on in public. As far as he is concerned wearing calipers is no different to wearing glasses – they’re just a thing he needs to help make life easier. He is blissfully unaware that they make him an object of curiosity for others. And you, as an abled person, do not have an automatic right to have your curiosity satisfied at the expense of my son’s confidence and comfort.


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