subscribe 0330 333 1113 I http://www.amateurphotographer.co.uk I 29 February 2020 41
‘Thebookwasnotonlyphysically
demanding,butemotionallyarduoustoo’alwaysbeena passion,hencethe
decision– followinghisson’sdiagnosis- todoa projectonpeoplelivingwith
cysticfibrosis.AsSimonexplains,it wasa
‘lightbulbmoment’.
‘I hadbeentoyingwithideaof
documentingEllis’severydaylife,asit
involvesa lotof medication,treatment,
andclinicvisits,andat thetimeI was
lookingtoshootmoremeaningfuland
emotionalportraits.Anotherbiggoalwas
toraiseawarenessof cysticfibrosis.It’s
notthatcommonandpeoplearenot
alwaysawareof therealityof the
condition– a lotof timesyouwouldn’t
knowsomebodyhasit, andit’snot
alwaysclearhowchallengingeverysingle
dayis. SoI feltthisprojectcouldbea
powerfulpieceof workanddecidedto
fundit viaKickstarter.’
Hardworkbutworthit
Decidingtostartthebookprojectwasthe
easypart,however,asit provedtobea
hugecommitmentin termsof timeand
energy.‘Thebooktooka yearof mylife.
Aswellasthephotography,I hadtoraise
moneyonKickstarter,designit,
everything,whilealsoworkingfulltime.It
wasnotonlyphysicallydemanding,but
emotionallyarduoustoo.Asa dadof a
youngboywithcysticfibrosis,I knowit’sa
life-limitingcondition,andwhenyoumeet
peoplefurtheralongthatjourneyyou
becomeveryawareof this.Twopeople
havesubsequentlydiedaftertakingtheir
portraits.SoI hadsomeverytoughdays
doingtheproject,butI alwaysknewit was
worthit fortheendresult.’As Simon explains, it wasn’t just a
matter of getting all 47 subjects together
in a big hotel room or similar public space
and doing a group shot. ‘People with
cystic fibrosis can’t mix with each other
owing to the risk of cross-infection so
I had to go and visit each one individually.
I also had to do this in a specific order,
visiting people who were at a higher risk
of infection first. I had to clean all my
camera gear in between visits, to make
sure I didn’t contaminate anyone’s house,
and carefully work out the routes to make
the most of very limited time.’
Simon got a huge response when he
initially asked for volunteers to be
photographed for the book, so he decided
to focus on three areas: Yorkshire,
Lancashire/Liverpool, and the Midlands.
He ended up covering about 1,500 miles,
with the minimum of overnight stays
Fortunately, this herculean task was well
worth it, as the response to the book has
been overwhelming. ‘I sent books all over
the world, and got a great response from
Europe, Asia, the US and Australia. It’s
been great for spreading awareness.’
Simon was also featured in the Daily
Express, as part of its campaign to
increase access to cystic fibrosis
medication here in the UK, and appeared
on the BBC regional news show, Look
North. Following this exposure, he
received a photographic commission from
the NHS to promote awareness of the
need for organ donation volunteers. We’re
sure more commissions will follow.See http://www.simonwiffenphotography.co.uk
‘I wanted the images in 47/A Life with Cystic
Fibrosis to be consistent, with the same
lighting, and everything in black & white,’
Simon explains. ‘There was to be no
distraction with colour, I just wanted to
focus on the individual and their story.’ He
also knew he would be shooting people in
a wide range of very different
environments, so he tried to travel light
when it came to gear.
‘I took all the portraits in the book on a
Canon EOS 5D Mark III, using a 50mm
f/1.4 lens. The background was provided
by a black pop-up reflector, and the
lighting set-up was very simple – just one
speedlight, through an umbrella. This was
enough to give me dramatic and emotive
portraits, without weighing me down with
gear or taking ages to get everything set
up.’ Following the travel and the shoot, the biggest challenge was choosing which
images to use in the book. ‘I tended to
choose the image very soon after the
shoot, something which best represented
the person I had just met. They’d
entrusted their story to me; it is a very
personal thing to have your portrait taken
and also to talk to a stranger about your
illness and reduced life expectancy.’Portraits with power
‘Iris’
Canon EOS 5D Mark III,
50mm, 1/200sec at
f/2.8, ISO 100‘Luke’
Canon EOS 5D Mark III,
50mm, 1/200sec at
f/2.8, ISO 100