Changing perceptions

Struck by a speedboat in a horrific accident, Jill Clark knows all about disfigurement and its effect on lives. Now she has teamed up with high-profile campaigner James Partridge to launch Changing Faces Channel Islands, a charity to help other sufferers. Shaun Shackleton spoke to them

'My skull was caved in, so I now have a metal head, my eye orbits have metal pins and my nose was rebuilt by using my hipbone,' she said, matter-of-factly.

To someone who had only just met her, the only physical sign of the trauma she went through is a scar on her throat.

'Tracheotomy,' she said. 'My face was so badly smashed up I couldn't breath properly.'

After the accident, Jill, who is now director of retail communications at Specsavers, spent four years in and out of hospital.

Her directness is amazing. Not only in the calm way that she describes what she has been through, but the fact that she can describe such trauma to a stranger.

But that is one of the main things Changing Faces Channel Islands is about - discussing disfigurement with confidence.

As its chairwoman, Jill was speaking at the charity's Guernsey launch, which was also attended by chief executive James Partridge and committee members Graham Beveridge,

Dr Nick King, John Fewkes and Chris Bound.

'I almost became a recluse,' she admitted of the dark days after the accident in the Little Russel.

'Then one night, about three months after, I decided to go to my local, the Prince of Wales. And that was the turning point. Seeing all my friends.'

She felt that she needed to be out of the house and back in her social circle.

'The hardest part is not the operation or the scars but other people's reaction to you. It's very hard.'

Luckily, Jill had a great network of loved ones around her.

'I was very fortunate and had very, very good support from my family, friends and employers,' she said.

I asked Jill if it is harder for women than it is for men with a disfigurement.

'It probably is,' she said. 'Society puts far more emphasis on feminine beauty. It's like that programme with Trinny and Suzanna. Do you think as many people would watch it if it were two men?'

There are five main aspects that determine disfigurement: birth conditions, including cleft lip and/or palates and birthmarks, trauma such as violence or burns, skin conditions such as acne, eczema and psoriasis, necessary treatment whereby surgery has removed part of the face and paralysis from strokes, Bell's palsy etc.

I was surprised that there was no mention of self-inflicted disfigurement, such as failed plastic surgery.

At the time of her accident, Jill wasn't aware of Changing Faces and even though it is estimated that 1,000 people in the Channel Islands have a disfigurement (and 400,000 in the UK), many are unaware that there is help and support.

And this is what James Partridge and Changing Faces Channel Islands seek to change.

'Tuning up health-care professionals in the island is very important,' said James, a former Guernsey dairy farmer and teacher. 'We will be holding annual seminars so that care professionals can up their skills.'

James was burnt at the age of 18 in a car fire. After four months in hospital and five years-worth of intermittent skin grafts, he wrote a book about his ways of coping with it.

'There wasn't any support,'

The book - Changing Faces: The challenge of facial disfigurement - aroused such media interest that James gave up farming and became a full-time campaigner for his newly formed charity.

I was struck by his quote, when asked by inquisitive children what happened to him: 'You should always take care and not play with matches.'

And it is this well-developed sense of humour that has helped him deal with his situation over the years.

'Humour is absolutely fundamental to coping positively,' he said. 'Seeing the funny side of an experience: even in the darkest places, black humour will help. It is a typical human reaction to hardship.'

He recalls the time he met David Blunkett.

'?I'm bloody glad I don't have a disfigurement?, he said to me and I said, ?I'm glad I'm not blind?.

'?Ah?, he said, ?being blind, you can't see other people's reactions?.'

But humour as a coping mechanism aside, James believes that for many people with a disfigurement, all it takes is stepping onto a bus and someone saying 'ugh' and they'll never use public transport again.

He quickly realised that people would always stare, so by teaching himself to walk tall, to maintain eye contact and change the subject away from his problems, he could make people feel more relaxed rather than alarmed or distressed about the way he looked.

'Once I'd mastered it - five years it took - I was not about to give it all up.'

Dr King studied neurological trauma at Cambridge and has worked as a locum at the burns unit at Queen Mary's Hospital in Roehampton. He has also known James Partridge for 25 years - from when he was his patient in 1982 - and was the duty doctor at A&E when Jill was brought in after her accident. They didn't meet again until he joined the committee.

The charity, he believes, is very worthwhile and provides essential services.

His role is to identify deficiencies in the health service concerning resources for people with disfigurement and help policymakers to reach the right decisions.

'Change is often brought about by the consequences of public opinion and not by policymakers,' he said.

Through his work at the Orchard Centre in St Martin's, Dr King is well versed in the isolating nature of disfigurement.

The outward signs of HIV and Kaposi's sarcoma, a debilitating cancer most often seen in HIV-positive, homosexual men, are both physical flags that show that someone has the disease.

But even if a disfigurement isn't noticeable, it can still marginalise those who have one.

'It may look insignificant,' says Dr King, 'but it's significant to them.'

The Channel Islands branch will be based in Guernsey and the charity is further to strengthen its UK presence by appointing a Scottish and a Welsh officer.

It will provide professional advice and counselling for local people and fund travel to the UK for those who need more specialist help.

As well as supporting those with disfigurement, helping those who care for them and promoting awareness to both health professionals and the public, it aims to teach people with fears or preconceptions to reconsider the way they look at those with disfigurement.

And Changing Faces Channel Islands does it all with an unflinching intelligence, a calm and measured courage and - perhaps most importantly of all - confident and infectious good humour.

* For more information on Changing Faces Channel Islands, phone 07781 444868 or email contact@changingfacesci.org.gg