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My fellow “Beginner” Simon Hardeman is far cleverer than I am, so I console myself with just doing the cheap stuff in the column. It’s how I make my living. What many peple don’t know is that I use a wheelchair. Also, that on my medical records it states that I have spinal muscular atrophy or SMA.
There’s a 17-month-old lad, named baby MB, whose parents are going through the courts at the moment on his behalf. He has SMA. The doctors caring for him want to withdraw his life support as they suspect that his quality of life will be intolerable. His parents, somewhat understandably, don’t want them to do this.
The same condition was diagnosed when I was younger, although, in fact, I never had the exact condition that baby MB has. What actually made me disabled was the oral polio vaccine I had when I was 4 months old (I’m now 37). My problem is that my muscles have atrophied, the root cause being in the spine.
Linguistically and, to a certain degree medically, I have a spinal muscular atrophy, but not the kind of genetically determined SMA that MB has. But I feel an affinity with the little chap. No one held out much hope for me either, except my family.
So let’s look at the issue of quality of life, shall we? The men in white coats say that continuing MB’s ventilation is not in his best interests because he has an intolerable life.
Now what gives someone the right to judge the quality of someone else’s life? As a species we’re so damn concerned with how we’re perceived by others, with what we own or how beautiful we are. Isn’t it enough that we’re here at all? That’s miraculous enough, surely.
Little MB’s folks claim he that responds to certain stimuli: voices, touch, lights, even certain movies. Good enough for me. OK, so he may not be a Mozart fan yet. So what? If Doctor God is playing the “quality of life” card, let him watch one of the Jeremy Kyle or Trisha whinge-fests on daytime TV. I reckon the endless parade of social inepts trotted out daily on these shows warrants a few lethal injections at the very least. If only to put them out of their misery, let alone mine.
I was born perfectly normally, then began a two-week coma after the polio injection. During that time various medical experts (in the sense that they knew how to spell stethoscope and had a private bay in the car park) pontificated to my scared parents about what life for little Spikey held in store. I was even christened in hospital (my middle name’s “Ward 11”).
My “quality of life”? According to the best medical minds of the day (1968) I was destined for a life of, at its very zenith, basket-weaving and dribbling. Somewhere between a vegetable and a hippy. My parents, not to mention my elder brother Iain, had other ideas.
We lived in Dunstable and, as such, I was treated and raised to be as stubborn and independent as anyone else round about. Consequently, I have never viewed myself as either disabled or, indeed, as possessing a disability. I am alive. OK, so I’m more good-looking than most blokes with a nice set of shiny wheels. I adapted. That’s what life does, if it has the chance. My quality of life was deemed unliveable, until I lived it. I’ m still living it, wondering how all you poor bipeds cope. And that’s the point, isn’t it? Some of you two-legged types can’t begin to wonder how any human could manage if they aren’t walking normally.
Humanity, like all of nature, will find a way to normality. Me, I’ve played bass in a band that was huge in Luton (but nowhere else), I’m a sit-down comedian who’s played the Edinburgh Festival three times, and been a regular in a BBC disability magazine programme.
I write jokes and sitcoms, and I’m currently making a television programme where I cross Australia in a wheelchair. And, importantly, I’m vice-captain of our pub pool team. I’m writing this at 4am in the morning, having inexplicably just lost our championship match.
I’m not saying that all this lies before this kid, baby MB. He may not live beyond nine years. If he dies, he dies and I, for one, will be sad.
But don’t kill him before he’s had a chance to live. After all, if 37 years ago people had thought like that, you’d have just spent the last few minutes staring at a blank piece of paper.
Alfie and Perry’s Beginners’ Guide will appear again next week in the Times Magazine.
WHAT IS SMA?
Spinal muscular atrophy (SMA) is a gene-linked condition that attacks the spinal cord and causes muscles to waste away.
In the most severe cases of SMA, babies are floppy, suffer from respiratory failure, and can die before their second birthday.
In less severe cases, which tend to be identified after the age of 18 months, babies and children survive into adulthood, and are able to support themselves, but often require a wheelchair.
Spike Breakwell suffered from a condition in infancy that was described on his medical records as a “spinal muscular atrophy” but doctors later believed the most likely cause of his paralysis was the oral polio vaccine administered to him when he was four months old.
Between 1962 and 2004, the polio vaccine was administered to children orally. This was a live version of the vaccine, and there was a one in a million chance of the child developing paralytic polio as a result. It looks as if Spike was one in a million.
There is no chance of this happening now. The injected polio vaccine now used is dead, so that it is impossible to develop polio as a result.
SIMON CROMPTON
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