Argus title :
One night a few weeks ago, a young disabled student, quite new to Brighton, stood on a local railway station saying goodbye to friends. They’d spent a happy evening together. As their train pulled out, he was left on his own.
Suddenly, a group of teenagers on the platform opposite noticed him – and his disability. They began to laugh and hurl mocking abuse. “Downs Syndrome! Downs Syndrome!” they bellowed. He offered no response and left the station. He’d felt welcome in Brighton, so it was upsetting. But it was nothing new.
Celebrities often say that the thing that is most difficult abut their lives is lack of privacy. They may have worked to achieve fame, but when it comes they are appalled by the constraints it imposes.
Many say they long to be able to walk in public places as they used to do without being stared at. They find it intolerable to have people they have never met whispering and pointing at them.
Celebrities, however, have the consolation of having, in a sense, chosen their fate. They also know that the public which scrutinises them usually does so with admiration and envy. Often they are protected by great wealth or influence.
There are others, however, who endure loss of privacy, public scrutiny and intrusion without either choosing it or receiving any of the benefits of fame and wealth. These are people with facial disfigurement. They are stared at, not because they are famous, but because they look unusual.
Adam Pearson is such a person. He does not have Downs Syndrome. He is 20 years old and has a genetic illness called Neurofibromatosis Type 1 (NF1). This causes non-cancerous tumours (neurofibromas) to grow around nerves. In Adam’s case they have caused serious disfigurement. He is blind in his left eye and has imperfect sight in the other.
NF1 affects one in every 2,500 people, so it is not rare. However, the disease attacks people differently. Some never know they have it or experience few symptoms. Others, however, are terribly affected, experiencing disability and in some cases disfigurement.
The disease is equally common in males and females of all ethnic backgrounds. About half inherit it from parents. In others it results from spontaneous mutation in families with no history of the disease. There is no cure.
It can be a particularly cruel disease, affecting some children within families and not others. In Adam’s family it seems to have been particularly capricious. He is one of identical twins. His brother Neil, who also has the disease, has no facial disfigurement. So when he looks at his twin he sees the face he could have had.
However, Neil has not escaped unscathed. His brain has been affected and he experiences epilepsy and short term memory loss.
Until the boys were 4 they were identical. Photographs reveal them to have been sweet faced moppets, hard to tell apart. However, around this time the tumours started. They grew and grew, until Adam’s face was covered with swellings, his features torn and twisted. He was no longer recognisable as the small boy he’d been. Yet he was of course the same inside.
The children at his Croyden primary school took his altered appearance in their stride. They’d known him as he was and adjusted to each change that took place. However, when he went to secondary school things were very different.
Not only did he have to cope with numerous painful operations, but when he returned to school he was bullied. He remembers having things thrown at him. But far worse were the constant insults hurled at him, such as “big head” and “spastic”. He wasn’t beaten, but he was isolated, taunted and humiliated.
It was family and friends, rather than teachers, who helped him cope. He has maintained friendships from that time and acknowledges that he loves his parents “to bits”.
He was assisted too by his church, developing a strong faith which he retains. And, throughout, he was supported by the national charity “Changing Faces”, which campaigns to improve attitudes to people with facial disfigurement.
Adam did well in his A Levels and is now reading Business Studies at the University of Brighton. He speaks warmly of University staff who have worked hard to support him.
He writes slowly. His damaged eyes and distorted features make it difficult for him to see what he is doing, forcing him to move his head up and down. As a consequence, the University has provided an assistant to take notes for him and has allowed him longer to prepare projects and complete examinations.
Adam likes his fellow students and says that, notwithstanding the station incident, he has been made to feel welcome and accepted in Brighton. He enjoys the life of a typical student, working and playing hard, occasionally drinking too much and rolling home to his student residence. On these occasions, usually following too long spent in the student pub “The Lectern”, he is, according to his housemates, a “hilarious” and “noisy” drunk.
He likes rock music and is a fan of Coldplay, Linkin Park and Muse. In his quieter more reflective moments he visits the cinema, takes long walks and is an afficionado of milkshakes, regularly visiting “Shake-away” in the Lanes with good friend, Lisa Byrne.
He hates being patronised, refusing to be cast in the role of victim. Occasionally, he lapses into bravado “Well if people choose not to sit near me on a train, I get to put my feet up”. But he is a sensitive person and it’s obvious that such rejections cause him pain.
I asked Adam how he would like strangers to respond to him. He replied: “I’d like them not to do a double take. I hate that. But if they do, not to do another one. And to smile at me and say hello, just normally ”.
For good reason, his friends are very important to Adam. They provide him with ballast.
As he says: “When I get too low they’ll kick me up the backside. When I get too high, they slap me down… sometimes I need that”.
I was privileged to meet with him and some of his friends in the front room of his typically untidy shared student flat. Amongst the detritus of a previous evening spent socialising I watched them tease and occasionally insult him and each other. The affection for him was palpable. Though they all complained bitterly that he doesn’t do any cleaning, he is as Sai Tang said “at the heart and soul of the group”.
It was the first time they’d discussed Adam’s disfigurement. As Helen Avery said fiercely: “Never needed to. Never wanted to. He’s just Adam.”
Outside the university they see other people staring at him, but they no longer notice any difference. Dave George’s comment was typical: “We just take him for granted….wouldn’t look at him twice now.” He added laughing “When you get to know him you realise he’s just as much of a ***** as everyone else”.
Many spoke about how welcoming they found Brighton to be and commented that it is generally a good place to be ‘different’.
I asked his friends how they would like strangers to conduct themselves when they first see Adam.
Andy Blake’s response was typical “ Just treat him like everyone else..and get to know him”. Dave agreed “Act normally and have an open mind. And don’t assume that because people have a physical problem they’ll have a mental problem as well”
Lisa Byrne added with some frustration “I just wish people would wait before they judge. People tend to assume he’s different …. but he’s really nice and clever and funny.”
I asked Adam what he would like to say to the teenagers who insulted him on the railway station, but he didn’t answer.
So I decided to answer instead. Because what those young people did was cruel – and must have brought back terrible memories of the bullying Adam endured at school.
So I think they ought to say sorry. And they should do so, not just because they injured Adam Pearson, not just because they insulted people with Downs Syndrome, but also because, when they did this, they let down our whole City.
Note: For support and advice “Changing Faces” can be contacted on 0845 4500 275”