Why can’t theatre imagine what it’s really like to be the parent of a disabled child?

http://www.theguardian.com/commentisfree/2015/feb/26/theatre-parent-disabled-child-kill-me-now

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It’s rare to have your life portrayed anywhere, especially in a play. I’m a parent of a child with a disability. I’m not in children’s storybooks or in adult films about family life. I’m the invisible parent. I’m someone no one wants to be.

And then Kill Me Now premiered this week at the Park Theatre in Finsbury Park, north London, a play by Canadian Brad Fraser, with Greg Wise playing Jake Sturdy, the father of disabled Joey. I attended a preview and was hopeful that it would reflect my experiences. Instead, it was a portrait of a thwarted, self-hating, self-destructive family who might be better off dead.

Kill Me Now opens with Jake bathing the twisted, twitching body of his 18-year-old son. (When non-disabled actors play disabled people, they love to squirm, startle and speak as if they were drunk.) Poor Joey struggles terribly to take a bath, and his put-upon parent strains to lift him in and out. Why doesn’t he simply take a shower, like any wheelchair user would? Funny how they’d never thought of that.

But that would make our lives look far too normal and not at all tragic. And the audience wouldn’t see Jake having to spend the first moments of his morning consumed by struggling to get his adult-sized son washed. Nor would we see a naked, writhing teenager screaming “I’m ugly! I’m ugly!” while Jake, unsuccessfully and without conviction, tries to persuade him otherwise.

These aren’t the first words I hear my daughter, of a similar age to Joey, shout when she gets up. She’s more likely to be boasting about how good she looks in her new leopard-skin coat. And my first thought when I rise each morning isn’t “My God! We’re a family with disabilities!”, as if it comes as a shock to me every time my alarm goes off. While Jake seems to be continually surprised by the fact that he has a disabled son, most of my waking thoughts are probably rather like yours – about getting the kids to school, getting ready for work, checking there’s something for supper.

When non-disabled actors play disabled people, they love to squirm, startle and speak as if they were drunk

In Fraser’s fantasy disabled family, we eat alone as we have no friends. The house is always silent (apart from the disabled child’s incomprehensible pants and groans), because the mere sight of someone with a disability frightens everyone away. But the main reason no one comes round is because it constantly smells of pee. In fact my home is quite fragrant, and the smell that’s likely to waft the way of our frequent visitors is not urine but the spaghetti bolognese boiling on the cooker to feed the three kids.

Non-disabled people are always obsessed about how disabled people go to the toilet. In Kill Me Now, none of the non-disabled characters ever go to the toilet. They must have very strong bladders and steel bowels. But the disabled characters have to pee, with help, and all the time. This portrait of a family life consumed by physical necessities is how the non-disabled world sees us – a cliched view that bears no relation to our daily life.

My friendships and my career, unlike Jake’s, haven’t all been sacrificed and destroyed, even though the play presumes they must have been. And I shouldn’t have to defend my most intimate life just because my daughter is disabled. But this play, with all its prejudices, forces me to do so, with Jake becoming impotent because of his concerns for caring for Joey. I didn’t know that having a disabled child meant you couldn’t get an erection. But I did know that a non-disabled world presumes you can’t have a sex life, and Kill Me Now propounds this.

How could this play get it so wrong? Even though three out of the five characters are disabled, Kill Me Now is a play with a cast, crew and writer without any disabilities. Fraser says he was inspired by a disabled nephew. There is no genuine disabled voice; my family’s life is seen from one dimension. Imagine a play about black people written and performed entirely by white people, then you get the idea.

Still, the play disturbingly rings true to the non-disabled audience because it gives voice and panders to all their preconceptions and fears about what it’s like to be in a family like ours. It presumes that we’re both consumed by disability and nobly fight it – yet still pities us. When the audience gives a standing ovation, they’re applauding this prejudice.

Why can’t theatre, which is supposed to be about creativity, imagine what it’s like to be me? Perhaps the best way to do that would be to include at least one disabled actor in the cast. But that might risk showing the life of a family which lives with disability as messy, flawed, joyous, human – and we wouldn’t want that. Because the title is Kill Me Now. And in the end, the father, becoming disabled himself – developing a creeping disabling condition – and with the terrible burden of Joey, hates life so much he kills himself, then the audience applauds. But sorry – I’m still here.