Introducing Tiny Tim syndrome

If you have a disabled child you will have met this one before.  I call it Tiny Tim Syndrome.  It’s living with, dealing with and generally finding a way through the two commonly acceptable options for the future of your disabled child. Your child has to either get better, or die. 

Getting better includes cures, miracle and otherwise – and can possibly, in some circumstances consist of the child becoming just more socially acceptable.  This means that they get a green-card either by acting like a “normal person” (i.e. they walk and talk) or if they are outstanding in other ways, such as athletics, comedy, music, writing or just gobsmackingly clever.  In the short term they can get away with even being profoundly disabled while they are little and cute.  No-one fully grown and profoundly disabled is cute, apparently.  The general public don’t do well tolerating disabled people if they aren’t cute, entertaining or at least sweetly pathetic.

When it comes to death, well obviously the death of a child is sad, but the death of a child who is disabled is only a little bit sad.  It’s not like the death of a “normal” child after all.  People around you can see it’s so much better for the parents who can now get on with living their normal lives.  It’s better for the child too, as their suffering and sad life is now at an end.  Oh good, what a relief and now let’s all get on with our nice normal lives.

Parents of disabled children see their children as gorgeous, handsome, sweet, funny, adorable and loveable.  They also see them as challenging, tiring, worrying, frustrating and sometimes boring – which pretty much covers what it’s like to be the parent of any child, whether they are disabled or not. 

The parents of disabled children learn to be incredibly organised and self-sufficient.  The endless rounds of hospital visits, wheelchair clinics and SEND meetings are just part of their lives.  Everyone needs a moan from time to time. Everyone gets exhausted, stressed and depressed from time to time.  But then there are those moments of incredible, glowing pride.  The competitions won, the performances given, the certificates, the commendations.  The illnesses beaten.  The endless wonderful little things and the amazing huge moments.  So many special moments, so much love and so much pride.

People outside of the disability world often seem not to understand what we want for our children. It seems not to occur to them that firstly, we don’t require our children to stop being disabled.  What we want for our children is for them to have great, fulfilled disabled lives. Fantastic lives.  We want them to be happy, healthy and to have long, long happy healthy lives.    We want them to have the lives they want to have themselves.  We want to help them achieve what they want. We don’t see the future they want for themselves as unrealistic.  So why do those outside our world find our children’s dreams of independence so ridiculous, unrealistic, threatening and just plain wrong?

So they infantize disabled people, making them forever patronized Tiny Tims.  Do they find that by infantizing them, by making them all into sweet, sad little Tiny Tims, they feel less threatened by their differentness? And why is differentness threatening?  Why do disabilities make them uncomfortable?

And then there is the neat solving of the problem of disabled children via their death.  How selfish we bereaved parents are, refusing to see that it’s so clearly all for the best.  A few weeks after Nico died, my mother’s cousin sent me a letter.  I have the letter still, though I’ve had no contact with her since she sent it.  In it she said “although at the moment you may be feeling very sad, in due course you will see this was for the best.  You will now never have to concern yourself over what will become of him when you are old or after you die, which must be a relief and best for everyone”

She never asked why he had died or anything about the circumstances of his death.  She never asked why a perfectly healthy young man of 23, albeit small for his age and with CP would suddenly die.

Because in the end, he was just another Tiny Tim, and his death was the best. The neatest and most convenient outcome.  Apparently.

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