Argus title : We must not judge by a first impression
There are some charities which are very worthy, but make you want to block your ears or run away. You know you ought to listen to their pitch, but you simply don’t want to.
There are others which deal with equally distressing issues, but somehow fill you with hope. They even make people smile.
One charity which disposes me to despair when I read its material, is the Neurofibromatosis Association of the UK. Its commendable role is to raise awareness of this Neurofibromatosis (NF) and fundraise for research. Regrettably, its publicity materials are often so frightening that they are likely to send anyone with NF into deep depression.
Though many people who have the disease are able to function perfectly well with it, the NF Association’s leaflets list every gruesome complication and finish with the doleful news that it can cause “disfigurement, disability, disadvantage and premature death”.
It is the only charity I know that lists donations made in memory of individual people alongside reassurances to the reader that “the cause of death was not necessarily due to neurofibromatosis”. In fact, NF can be fatal, but rarely is.
In contrast, the charity “Changing Faces”, which deals with disfigurement issues and often confronts the severest manifestations of Neurofibromatosis, is always positive. The first leaflet I ever saw was headed “Face it…you’re fantastic”.
“Changing Faces” celebrates its 15th anniversary this year. It was launched in 1992 by James Partridge, who sustained severe burn injuries following a car accident at the age of 18. He recognized an unmet need, which was to address the psychological and social needs of people with disfigurements. He realized that quite apart from medical intervention, one of the greatest needs of people with disfigurements is to be accepted and respected by the rest of society.
Over the past 15 years there have been major achievements. The charity developed a uniquely successful support programme to assist individuals with disfigurements and their families. It lobbied successfully to ensure that people with disfigurements receive protection through the Disability Discrimination Act 1995.
The charity pioneered the Outlook Unit at Frenchay Hospital in Bristol – the only NHS unit that provides psychological and social interventions for people with disfigurements as a routine part of medical care. It also launched the UK’s first advertising campaign aimed at changing the general public’s attitude to people with disfigurements.
”Changing Faces” states that its “vision is to create a better and fairer future for people who have disfigurements to the face, hands or body – whatever the cause. The ultimate goal is to enable everyone to face disfigurement with confidence.” It has highlighted the widespread prejudice and stigmatization which all too often blight the lives and careers of people with disfigurements.
As part of its poster campaign on London Transport called “Facing Disfigurement with Confidence”, it published positive images of people with disfigurements alongside hard-hitting and often witty slogans. One of them posed the question “What do you say when you meet someone like me?” and provided the reply “How about hello”.
The charity doesn’t berate the general public or blame them for being startled. It advises them on ways to approach people with courtesy and how to see the person beyond the disfigurement.
Nowadays the charity faces a wider challenge, for as a society we are becoming more and more obsessed with appearance. Francesca Leadlay of “Changing Faces” said “The norms of “acceptability” seem to be narrowing instead of broadening – making people with disfigurements feel more and more marginalised in society instead of a part of it.”.
There is no group in society which suffers more from this narrowing of norms of acceptability than the young and this is why “Changing Faces” concentrates so much of its effort and resources on them.
It has an active Young People’s Council and on the 16th April launched its ground-breaking young people’s website www.iface.org.uk, funded by BBC Children in Need. This is the first interactive site created by young people for young people to tackle disfigurement issues.
The website gives young people with disfigurements a public voice and practical strategies to deal with situations that they might find difficult. It is an extension of “Changing Faces” other work with young people aged 11-21, which includes one-to-one telephone and email support, workshops and other services, including work in schools.
In order to find out more about it, I tracked down 22 year old Adam Pearson, who is a member of the Young People’s Council and helped design and build the website. I wrote about him two years ago in this column.
In 2005 he was a first year Business Studies student at Brighton University. Now in his final year, he divides his time between preparing for his final examinations and working voluntarily for “Changing Faces”. He is one of their most confident media spokespeople.
Adam has an extreme form of Neurofibromatosis and has very noticeable disfigurement. Neil, his identical twin brother, also has NF. He experiences memory loss and epilepsy, but has no facial difference.
Though one in 2,500 people have NF1, some 30% of them are unaware that they have it or barely notice the symptoms. Some have a many tumours. However, in Adam’s case no part of his face is unaffected. He has lost an eye and has poor sight in the other. His hearing is also affected.
When I met him 2 years ago I was struck by his courage and his unwillingness to dwell on bad experiences. He is an ideal person to represent the charity, because he has endured so much and is – at least publicly – unremittingly positive. He has undergone 17 painful operations, but has not allowed this to damage his academic career. He needs an assistant to help him read, but despite all of this, expects to get a good degree.
He was savagely bullied at his Croydon secondary school, by boys who called him “Fathead” Bighead” and “Elephant man”. He says the school did nothing to stop the abuse, though he notes this hasn’t stopped them parading him as a “successful” former pupil. “It was going on the television that did it” Adam remarked with a wry chuckle.
Such hypocrisies would reduce most people to fury, but to Adam they seem par for the course. I sense he expects very little from the non-disabled world.
He tells me he has enjoyed his Business Studies course. He drinks far less than he did when he was a wild first year student and has become involved with a student-friendly local church, the Church of Christ the King. After he graduates, he plans to study there.
He is excited about the website. It is a three-year project funded by BBC Children in Need which evolved from the needs and concerns of young people, who often find it hard to talk about experiences of disfigurement. Like Adam, they are often teased, bullied and excluded on the basis of their appearance.
Adam said “Young people can find it hard to talk. The website will create a safe online community to share information and ideas and give young people with disfigurements a public voice. They’ll also be able to chat about other issues which may be totally unrelated to disfigurement.”
The site will be moderated by so-called “super-users” – young people like Adam who have disfigurements and have been involved with building the site and creating content.
The site is open to all young people and will welcome contributions from family members, friends and others with an interest in disfigurement issues.
Last time I met Adam I was struck by his courage, and the dignity and occasional fierce humour with which he handled his disability. It’s rare to find this in anyone so young.
This time, I found I simply liked him. I watched as he leant down to pat our dog Daisy, who was leaping up at him. I realised he was struggling to balance and that even the simple task of petting a dog is a major undertaking for him. Yet he didn’t complain.
He tells me Brighton continues to be welcoming and that there has been no repeat of the incident of harassment I described 2 years ago. Knowing the city as I do, I’m not sure I fully accepted that. However, I respect his courage and fortitude.
I wish him well in his finals. I’m really glad he’s going to stay on in Brighton.
This city needs people like him.
“Changing Faces” can be contacted on 0845-4500275. The website is at www.iface.org.uk.