First published on Guardian.co.uk on 17th May 2013, under the heading 'Facing blindness by seeing the funny side'.
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| The film Come As You Are depicts blindness, disability and illness with humour, compassion and a striking lack of queamishness |
What would you do if you were told you were going blind?
Quit your job, cut loose and rush to live out your most lurid fantasies? Nice
idea, but your mates are still at work, and wealth doesn't increase in inverse
proportion to eyesight, alas. Still, you'd be expected to react, so what would
it be: fury, despondency, soul-searching, or would you try to see the funny
side?
In the summer of 2006 I was diagnosed with retinitis
pigmentosa (RP) – an inherited condition that affects the retina of
the eyes, often leading to complete blindness. It was picked up by an optician
at a routine sight test after I casually mentioned my exceptional clumsiness
after dark (how I'd fail to spot big things like cars and ditches which, I'd
noticed, everyone else managed to avoid). That's how RP begins, with
night-blindness and accidents, followed by a gradual erosion of peripheral
vision and more accidents.
When I told my family, they frowned gravely and muttered
terrible portents like "devastating" and "life-changing".
But I didn't feel as though much had changed. I might go
blind; I might not. I might walk into the path of a bus; I might hop on it and
go on a fantastic journey. The future remained unforeseeable, and the splotches
of peripheral vision whose absconding I had barely noticed remained unseen – as
well as unseeing. Blindness was already here in a ghostly, imperceptible sort
of way; I felt more perplexed than devastated.
My mum, realising that half the genetic flaw causing my eyes
to self-destruct came from her, was overcome with guilt. Learning about the
randomness and odds-defyingly bad luck inherent in inheritance didn't help. Nor
did it help when I stressed that I was not merely unresentful, but grateful to
her for having had the particular genetic accident – coding error
notwithstanding – that made me.
None of this was funny. I don't remember crying, but I
definitely didn't laugh. Now, seven years on, when kindly folk ask – as they do
– "How are your eyes?", what am I meant to say: "Still
rotting?" Hardly amusing, I grant you, but what else?
There's no natural or comforting response to sight loss. A
couple of years back, a Channel 4 documentary-maker leapt to the presumption that
I'd want to go on a grand sightseeing expedition to curate a memory-gallery of
sights to console myself with in years to come – a proposal I turned down after emailing the blind academic John Hull (PDF).
"The supposition is that the life of a blind person
will be retrospective, living in the past," replied the media-wary
professor. "But one must affirm one's grasp of life as a present reality,
not live in nostalgia."
I also emailed the American memoirist Jim Knipfel –
who went blind as a result of RP in his 20s – who explained how he too was
approached by a film-maker of a sentimental bent. "Upon meeting me she
said, 'Oh, how wonderful it must be to be blind – you're living in a whole new,
magical world.'"
What possible response? "My first impulse was to grab a
letter-opener and let her find out first-hand what blindness is like. Instead,
I warned her that her belief in magic might not survive watching me try to get
across my apartment without tripping over anything."
In fairness to these film-makers, it's not easy to depict
sight loss in a visual medium – and at least they wanted to try. All too often,
blind people are omitted from film and TV for fear of depicting them in an
insensitive way or unsettling the audience. This lack of representation is
creating a problem for visually impaired citizens of the US, reckons Knipfel.
"Kids no longer grow up with images of bumbling blind
people in cartoons and on sitcoms, and so no longer understand the white cane.
This move to make everything 'nice' has resulted in an incredibly dangerous
situation, as all those people I've run into can attest."
Which is one good reason among many to endorse the daring
exceptions, films such as Come As You Are (to be released in UK cinemas on 7th June) – a funny, moving and distinctly unsentimental
story about three young men, one blind, one paralysed and one who has cancer,
who go on a road trip in pursuit of sex.
Knipfel's writing is a masterclass in seeing the funny side
when you can't see much else. Now 47, he has honed a knack for dragging readers
deep into the awfulness of a situation before bursting the pathos with an
acerbic joke. His grimly mirthful memoir Slackjaw –
lauded widely, even by the usually reticent Thomas Pynchon – details some of
the dire predicaments Knipfel got into as a young man with deteriorating sight. The worst was when, aged 20, he collided with a lamppost so hard that it left
him with a brain lesion and permanently reliant on anti-seizure medication. His
vision continued to recede and he was registered blind by the time he was 30 –
the age I am now – yet he remains relentlessly sardonic and self-mocking. Is
that what I should do, take my sight loss less seriously?
"Well, humour has always been my reaction to a world I
find absurd," confesses Knipfel, "especially when the people around
me seem to take it all so seriously. When I went blind, that seemed as
ridiculous as anything else, so I reacted to it in the same way."
But does it help to cope with sight loss, this refusal to
take the world seriously? "To be honest, blindness has never really
bothered me that much. It's an annoyance – like a head cold or hangnail. The
best thing about mixing blindness and humour is that I can now get away with
even more than I did before."
I admire Knipfel's insouciance, but it's not for me, I fear.
The prospect of worsening sight scares me, and I don't find it easy to make
light of the gaucheness it causes. Remember when Gordon Brown, who is blind in
his left eye, roused hilarity by appearing to shun a
handshake from a policeman on the door of 10 Downing Street? I felt a stab
of vicarious embarrassment because I suspected that Brown's failure to spot the
officer's outstretched hand had been caused by his limited peripheral vision –
it's a mishap that has befallen me several times. OK, such faux-pas are
comical, but isn't it just plain cruel to laugh?
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| Author Jim Knipfel wears a fedora - for safety reasons |
"Not at all," insists Knipfel, who wears a fedora
because the brim gives a "split-second warning" before his head hits
another post. "All of us – blind people, sighted, disabled, mentally ill,
whatever race, whatever religion – we all have attributes that can and should
be amplified for comic exploitation. We're all fodder!"
It's hardly comforting, the prospect of becoming ever
riper-fodder for ridicule, but I suppose it's preferable to being disregarded
or patronised. "Damn right. The blind are, for the most part, a fairly
hapless group. You deny that and, as I mentioned, before long no one will know
what a white cane is or what blindness entails, and that's no good for
anyone."
"OK, Jim, I'll do my best," I resolve to email
back. "Now if you'll excuse me, I'm off to buy a sombrero. Even if it
doesn't save me from handshake blunders or lampposts, at least it'll hide my
blushes."
