The two sides of Alison's face did not develop in tandem By Dan Bell BBC News
The two sides of Alison's face did not develop in tandem By Dan Bell BBC News
On a packed commuter train, passengers rarely give their fellow travellers more than a passing glance. But Alison Rich is not just another face in the crowd - what is the impact of facial disfigurement on an otherwise normal life?
On a packed commuter train, passengers rarely give their fellow travellers more than a passing glance. But Alison Rich is not just another face in the crowd - what is the impact of facial disfigurement on an otherwise normal life?
Every morning on her way to work, Alison Rich is met with sideways glances and furtive second looks. Some people stare openly, others turn away out of embarrassment.
Every morning on her way to work, Alison Rich is met with sideways glances and furtive second looks. Some people stare openly, others turn away out of embarrassment.
Alison was born with a condition that impeded the development of the left side of her face and gave her spine a severe scoliosis, curving her back from side to side. From the ages of two to 13, she was strapped into a brace from her waist to her neck. She has had to deal with such reactions all her life.
Alison was born with a condition that impeded the development of the left side of her face and gave her spine a severe scoliosis, curving her back from side to side. From the ages of two to 13, she was strapped into a brace from her waist to her neck. She has had to deal with such reactions all her life.
She now works for Changing Faces, a charity that challenges the prejudices surrounding facial disfigurement. Ahead of a public discussion on Thursday at the Wellcome Collection in London, Alison invited me to follow her daily commute to witness the reactions of fellow passengers.Don't look is usually the unspoken rule of a crowded commute
She now works for Changing Faces, a charity that challenges the prejudices surrounding facial disfigurement. Ahead of a public discussion on Thursday at the Wellcome Collection in London, Alison invited me to follow her daily commute to witness the reactions of fellow passengers.Don't look is usually the unspoken rule of a crowded commute
What for everyone else is a momentary shock, followed by a double-take, for Alison is constant undermining scrutiny.
What for everyone else is a momentary shock, followed by a double-take, for Alison is constant undermining scrutiny.
As suited workers file on to the drizzle-stained platform in south London, she is met with a series of second glances. One man stares openly, his mouth slightly open, eyebrows knitted in fascination. A woman looks away, her face full of pity.
As suited workers file on to the drizzle-stained platform in south London, she is met with a series of second glances. One man stares openly, his mouth slightly open, eyebrows knitted in fascination. A woman looks away, her face full of pity.
No-one actually says anything, but as passengers crowd onto the train, their eyes dart up from a newspaper, or hastily look away and then back again. One woman stares, her eyes wide in grim fascination.
No-one actually says anything, but as passengers crowd onto the train, their eyes dart up from a newspaper, or hastily look away and then back again. One woman stares, her eyes wide in grim fascination.
"Some people we work with tell us people literally stand back in horror. But for me it's that constant slow drip, drip and you can imagine what that does to someone who is not emotionally equipped."
"Some people we work with tell us people literally stand back in horror. But for me it's that constant slow drip, drip and you can imagine what that does to someone who is not emotionally equipped."
Findings by Changing Faces suggest 542,000 - or one in 111 - people in the UK have a significant facial disfigurement. Alison, 35, says the publicity that comes from events such as the Wellcome Collection debate helps challenge responses to disfigurement, engrained from the playground to the workplace.
Findings by Changing Faces suggest 542,000 - or one in 111 - people in the UK have a significant facial disfigurement. Alison, 35, says the publicity that comes from events such as the Wellcome Collection debate helps challenge responses to disfigurement, engrained from the playground to the workplace.
"We don't have to be PC about it. We can't deal with it until people are aware of what they are thinking."
"We don't have to be PC about it. We can't deal with it until people are aware of what they are thinking."
Changing Faces aims to change perceptions
Changing Faces aims to change perceptions
While society is more accepting of physical disability, the huge growth in cosmetic surgery suggests beauty is increasingly skin-deep.
While people with physical disabilities have more rights in law than ever - leading a growing awareness of their needs - the huge growth in cosmetic surgery suggests beauty is increasingly skin-deep.
A 2007 survey by market analysts Mintel predicted people in Britain would spend about £1bn on cosmetic surgery in 2008. They found 577,000 cosmetic treatments were carried out in the UK in 2007, up from 300,000 in 2005.Seeking to improve on nature
A 2007 survey by market analysts Mintel predicted people in Britain would spend about £1bn on cosmetic surgery in 2008. They found 577,000 cosmetic treatments were carried out in the UK in 2007, up from 300,000 in 2005.Seeking to improve on nature
Alison believes the trend is leading to a narrower definition of what people find acceptable. Professor Alex Clarke, from the Royal Free Hospital - which has ethical permission to perform the first face transplant in the UK - agrees with her.
Alison believes the trend is leading to a narrower definition of what people find acceptable. Professor Alex Clarke, from the Royal Free Hospital - which has ethical permission to perform the first face transplant in the UK - agrees with her.
There is now pressure not just from celebrity culture, but in what is expected from day-to-day life as well.
There is now pressure not just from celebrity culture, but in what is expected from day-to-day life as well.
"It's more the sort of presentation of highly attractive people in everyday contexts. It's the sitcoms like Friends or Neighbours, or very good-looking newsreaders. That's the subliminal message," she says.
"It's more the sort of presentation of highly attractive people in everyday contexts. It's the sitcoms like Friends or Neighbours, or very good-looking newsreaders. That's the subliminal message," she says.
And this airbrushed ideal is emerging at an early age. For someone going through puberty with disfigurement, the anxiety and insecurity can be particularly distressing.
And this airbrushed ideal is emerging at an early age. For someone going through puberty with disfigurement, the anxiety and insecurity can be particularly distressing.
"Because it is coming at you from all angles, from the TV, from the internet, it's very difficult to stand back from this and say do I agree with this? Am I happy to look the way I am?"
"Because it is coming at you from all angles, from the TV, from the internet, it's very difficult to stand back from this and say do I agree with this? Am I happy to look the way I am?"
Alison is not opposed to plastic surgery - she has had 15 operations on her face. The decision whether to go under the knife, she says, should come down to individual choice.
Alison is not opposed to plastic surgery - she has had 15 operations on her face. The decision whether to go under the knife, she says, should come down to individual choice.
And medical advances such as face transplants can raise false hopes of what can be done for people with disfiguring conditions.Isabelle Dinoire, who received the first partial face transplant
And medical advances such as face transplants can raise false hopes of what can be done for people with disfiguring conditions.Isabelle Dinoire, who received the first partial face transplant
"You look at somebody with a pan-facial scar from a Spitfire, for example, or at somebody with a pan-facial scar from a road accident, the cosmetic result really isn't much different," says Prof Clarke.
"You look at somebody with a pan-facial scar from a Spitfire, for example, or at somebody with a pan-facial scar from a road accident, the cosmetic result really isn't much different," says Prof Clarke.
It's a point that Alison feels strongly about too.
It's a point that Alison feels strongly about too.
"The first thing is that they are only available to a very small number of people with particular injuries, so everyone is not going to be suddenly walking out with a face transplant.
"The first thing is that they are only available to a very small number of people with particular injuries, so everyone is not going to be suddenly walking out with a face transplant.
"The way the media has presented face transplants is it sets them out as a great white hope and plays into this stereotype that it's absolutely impossible to lead a decent life if you have a disfigurement, and that just isn't true."
"The way the media has presented face transplants is it sets them out as a great white hope and plays into this stereotype that it's absolutely impossible to lead a decent life if you have a disfigurement, and that just isn't true."
Coping strategy
Coping strategy
Ultimately Alison has dealt with her disfigurement through inner strength.
Ultimately Alison has dealt with her disfigurement through inner strength.
At school, girls would be friendly outside the gates, but shun her in the classroom. At discos boys would stand in front of Alison before turning to her friends and refusing to dance with her. I don't look in the mirror in the morning and say 'oh God, look at my face'
At school, girls would be friendly outside the gates, but shun her in the classroom. At discos boys would stand in front of Alison before turning to her friends and refusing to dance with her. I don't look in the mirror in the morning and say 'oh God, look at my face'
It was one of the cruellest reactions that transformed how she dealt with her disfigurement.
It was one of the cruellest reactions that transformed how she dealt with her disfigurement.
"I was in the student union and this guy came up to me and threw me against the wall and said: 'You are the ugliest thing I have ever seen, I'd kill myself if I looked like you'. I just didn't go out for a few days, I was quite bruised by it.
"I was in the student union and this guy came up to me and threw me against the wall and said: 'You are the ugliest thing I have ever seen, I'd kill myself if I looked like you'. I just didn't go out for a few days, I was quite bruised by it.
"But it also made me realise how I was going to handle myself and that I had to get strong inside. And I think even more importantly I needed to learn how to deal with these things."
"But it also made me realise how I was going to handle myself and that I had to get strong inside. And I think even more importantly I needed to learn how to deal with these things."
In a way, she says, he did her a favour. She now has a number of strategies she recommends to anyone concerned about their disfigurement: Look someone in the eye, have a short explanation ready, move the conversation on, and seek expert support.
In a way, she says, he did her a favour. She now has a number of strategies she recommends to anyone concerned about their disfigurement: Look someone in the eye, have a short explanation ready, move the conversation on, and seek expert support.
But she still has bad days.
But she still has bad days.
A young man who had been talking to her suddenly turned round and said: "you'd be really lovely if you weren't so ugly"; and before her wedding a shop assistant told her: "Oh gosh, I didn't think that someone who looked like you could get married."
A young man who had been talking to her suddenly turned round and said: "you'd be really lovely if you weren't so ugly"; and before her wedding a shop assistant told her: "Oh gosh, I didn't think that someone who looked like you could get married."
Alison is always aware of how those around are reacting.
Alison is always aware of how those around are reacting.
"I never have a day off. But I don't look in the mirror in the morning and say 'oh God, look at my face'. I think I'm looking pretty tired today, or shall I pick up some lipstick, or 'hey, you're looking pretty good'."
"I never have a day off. But I don't look in the mirror in the morning and say 'oh God, look at my face'. I think I'm looking pretty tired today, or shall I pick up some lipstick, or 'hey, you're looking pretty good'."
Add your comments on this story, using the form below.
Below is a selection of your comments:
I have two legs full of skin grafts due to extensive third degree burns, and some burns on my face which have faded slightly with time. When I first started going out again after the fire, people stared & some even asked questions; they still do. The point is, how can I feel offended by simple curiosity or the fleeting instinct to look at something that is different? I'd stare if I saw my legs on someone else. However, if anyone, & they very rarely are, is rude... well, they soon get to realise that what I'm missing in the attractive leg dept, I make up for with the cluster-bomb that is my withering scorn. The bottom line? My scars are who I am. They are my badge of honour. They show I'm living a life that means everything to me because I almost lost it. If anyone is experiencing the 'yuck' factor or has a problem with that, that's just what it is; their problem.Deborah
I have two legs full of skin grafts due to extensive third degree burns, and some burns on my face which have faded slightly with time. When I first started going out again after the fire, people stared & some even asked questions; they still do. The point is, how can I feel offended by simple curiosity or the fleeting instinct to look at something that is different? I'd stare if I saw my legs on someone else. However, if anyone, & they very rarely are, is rude... well, they soon get to realise that what I'm missing in the attractive leg dept, I make up for with the cluster-bomb that is my withering scorn. The bottom line? My scars are who I am. They are my badge of honour. They show I'm living a life that means everything to me because I almost lost it. If anyone is experiencing the 'yuck' factor or has a problem with that, that's just what it is; their problem.Deborah
My son has a facial disfigurement and I almost want to kill people who stare and make comments in his hearing. They are deeply hurtful and I know they affect his self esteem. He is a lovely, kind, gentle and well mannered. I hide my feelings all the time when out with him as he has to learn to live in the world and put up with the stupidity and shallowness of the general public, but it doesn't stop it hurting.Julian, St Helens, Lancs
My son has a facial disfigurement and I almost want to kill people who stare and make comments in his hearing. They are deeply hurtful and I know they affect his self esteem. He is a lovely, kind, gentle and well mannered. I hide my feelings all the time when out with him as he has to learn to live in the world and put up with the stupidity and shallowness of the general public, but it doesn't stop it hurting.Julian, St Helens, Lancs
Whilst I sympathise with Alison's condition, I am not surprised that people will do a double take or stare. People are naturally curious - is it any different to people staring an an outrageously beautiful woman, a cute baby, a handsome man? However, derogatory and insensitive comments are unforgivable.F, UK
Whilst I sympathise with Alison's condition, I am not surprised that people will do a double take or stare. People are naturally curious - is it any different to people staring an an outrageously beautiful woman, a cute baby, a handsome man? However, derogatory and insensitive comments are unforgivable.F, UK
I'm deaf and British Sign Language is my 1st language. When I'm talking to a BSL user, either deaf or hearing, I'm also stared at by people. I feel bit offend as we don't stare at people talking, which is rude. It should be the same in another way around. I get stared by children, which is normal for their age, and they often make enquiries to their parents or copy our signing by waving their hands in the air. We even get lots of offensive remarks from teenagers. Over 100 years ago deaf people were not allowed to sign in public.Richard Collins, Preston, Lancashire, England
I'm deaf and British Sign Language is my 1st language. When I'm talking to a BSL user, either deaf or hearing, I'm also stared at by people. I feel bit offend as we don't stare at people talking, which is rude. It should be the same in another way around. I get stared by children, which is normal for their age, and they often make enquiries to their parents or copy our signing by waving their hands in the air. We even get lots of offensive remarks from teenagers. Over 100 years ago deaf people were not allowed to sign in public.Richard Collins, Preston, Lancashire, England
Like it or not we are genetically predisposed for reproduction purposes to be attracted to symmetrical faces. We can refrain from staring and pointing however without too much effort however. Peter Acton, London, UK
Like it or not we are genetically predisposed for reproduction purposes to be attracted to symmetrical faces. We can refrain from staring and pointing however without too much effort however. Peter Acton, London, UK
Whilst people who say thoughtless and cruel things are to be despised, it's unrealistic to expect people not to notice and react when people look different from the norm (if such a thing exists). Don't assume you know what people are really thinking when they are "reacting". Sure, most people will feel pity when they see someone with a disfigurement - precisely because most people will have an understanding of how tough that would make a person's life. I know pity is often as annoying as hostility, but a completely neutral reaction is never going to happen - human beings are hard-wired to react to everything. The only thing you can control is how much you choose to let it affect you. Perri, London
Whilst people who say thoughtless and cruel things are to be despised, it's unrealistic to expect people not to notice and react when people look different from the norm (if such a thing exists). Don't assume you know what people are really thinking when they are "reacting". Sure, most people will feel pity when they see someone with a disfigurement - precisely because most people will have an understanding of how tough that would make a person's life. I know pity is often as annoying as hostility, but a completely neutral reaction is never going to happen - human beings are hard-wired to react to everything. The only thing you can control is how much you choose to let it affect you. Perri, London
Beautiful people are beautiful inside and a human inside is much bigger than surface. Ugly humans kill, rape, steal and denigrate - whatever their superficial appearance. It is the inside person who affects others.David Johnson, Stockport
Beautiful people are beautiful inside and a human inside is much bigger than surface. Ugly humans kill, rape, steal and denigrate - whatever their superficial appearance. It is the inside person who affects others.David Johnson, Stockport
I volunteer with young people with disabilities and unfortunately it is an everyday experience for people to act inappropriately. On a recent trip to the zoo it was like our young people were an attraction. I think a massive part of the issue is embarrassment in not knowing how to react, due to a lack of understanding. So people either stare in fascination or act as if you are not there (to the point where they will climb over a young person rather than ask them to move). I was very lucky to go to a school where there was a special educational unit and all the children interacted. Because we were taught not to be embarrassed about disability, it never even occurred to me to treat my friends differently. I think if children and adults are better educated about disability and disfigurement then they will come to realise that there really isn't anything to stare at or to make them feel uncomfortable.Amy, Swindon, UK
I volunteer with young people with disabilities and unfortunately it is an everyday experience for people to act inappropriately. On a recent trip to the zoo it was like our young people were an attraction. I think a massive part of the issue is embarrassment in not knowing how to react, due to a lack of understanding. So people either stare in fascination or act as if you are not there (to the point where they will climb over a young person rather than ask them to move). I was very lucky to go to a school where there was a special educational unit and all the children interacted. Because we were taught not to be embarrassed about disability, it never even occurred to me to treat my friends differently. I think if children and adults are better educated about disability and disfigurement then they will come to realise that there really isn't anything to stare at or to make them feel uncomfortable.Amy, Swindon, UK
I had a small facial disfigurement once and the reaction I got was mostly the furtive stares from people. It was only there for a few months until removed at hospital but it was amazing the downer it had on my confidence at the time. Anthony, Basingstoke
I had a small facial disfigurement once and the reaction I got was mostly the furtive stares from people. It was only there for a few months until removed at hospital but it was amazing the downer it had on my confidence at the time. Anthony, Basingstoke
It's a human reaction to look at something that is new or different. As with any situation were I see someone with a physical handicap, disfigurement or whatever my usual reaction is to ask about the condition. Is that wrong?Graham, Cambridge
It's a human reaction to look at something that is new or different. As with any situation were I see someone with a physical handicap, disfigurement or whatever my usual reaction is to ask about the condition. Is that wrong?Graham, Cambridge
Sadly, some of these comments don't surprise me. People are just so shallow it's disgusting - I've had random strangers comment on my size in the middle of the street (I'm short and quite overweight) and I've had people look down their noses at me when commuting into work, as though they resent having to share their space with a less-than-perfect being. Alison is such an inspiration for us all to be more accepting of ourselves, even those of us who look "different" and to ignore the rules pushed on us by society of how we should look.Sharon, London, UK
Sadly, some of these comments don't surprise me. People are just so shallow it's disgusting - I've had random strangers comment on my size in the middle of the street (I'm short and quite overweight) and I've had people look down their noses at me when commuting into work, as though they resent having to share their space with a less-than-perfect being. Alison is such an inspiration for us all to be more accepting of ourselves, even those of us who look "different" and to ignore the rules pushed on us by society of how we should look.Sharon, London, UK
The ugliest thing in this article is the ignorance and bad manners of some of the people who made comments to Alison. Not Alison's face.Kate, London
The ugliest thing in this article is the ignorance and bad manners of some of the people who made comments to Alison. Not Alison's face.Kate, London
I can easily imagine myself giving an involuntary second glance and then looking away with pity. But the question begged, and is not answered by an otherwise fascinating article, is what reaction on the part of others would Alison consider kindest and most considerate of her feelings? How would she prefer people react?Bill Gribble, Gloucester, UK
I can easily imagine myself giving an involuntary second glance and then looking away with pity. But the question begged, and is not answered by an otherwise fascinating article, is what reaction on the part of others would Alison consider kindest and most considerate of her feelings? How would she prefer people react?Bill Gribble, Gloucester, UK
I have a pretty big birthmark on the side of my head, face and neck so I understand where Alison is coming from about getting sideways glances and stares from lots of people. But my attitude has always been to just get on with it; if people want to have a look and stare then it's up to them, I just rise above it and get on with my life.David Gore, Liverpool, UK
I have a pretty big birthmark on the side of my head, face and neck so I understand where Alison is coming from about getting sideways glances and stares from lots of people. But my attitude has always been to just get on with it; if people want to have a look and stare then it's up to them, I just rise above it and get on with my life.David Gore, Liverpool, UK
She is totally right about the definition of acceptable being narrowed. Of course, the worst thing is that the image of "beauty" presented by celebrities and the media is nothing of the sort. Even "normal" is no longer normal, and it's time the pretence that these people's looks are totally natural and fairly easily attainable was put to a stop. Not that the BBC has any moral high ground, as Moira Stewart and others could vouch for.Doug Daniel, Glasgow, Scotland
She is totally right about the definition of acceptable being narrowed. Of course, the worst thing is that the image of "beauty" presented by celebrities and the media is nothing of the sort. Even "normal" is no longer normal, and it's time the pretence that these people's looks are totally natural and fairly easily attainable was put to a stop. Not that the BBC has any moral high ground, as Moira Stewart and others could vouch for.Doug Daniel, Glasgow, Scotland
Parents - if your child points out the obvious, don't tell it to be quiet. They're being truthful, and talking about such things encourages acceptance.James, Paris
Parents - if your child points out the obvious, don't tell it to be quiet. They're being truthful, and talking about such things encourages acceptance.James, Paris
I don't know why we are so obsessed with beauty. Big Brother is a joke, but is in fact one of the only programmes to feature disabled people. Why are there no disabled/disfigured people in soaps? Why are there no disabled/disfigured people on X Factor? If the faces of the media were not so selected, then they wouldn't be considered freaks - they would be normal people, which is what they are.Dawn, Bedford
I don't know why we are so obsessed with beauty. Big Brother is a joke, but is in fact one of the only programmes to feature disabled people. Why are there no disabled/disfigured people in soaps? Why are there no disabled/disfigured people on X Factor? If the faces of the media were not so selected, then they wouldn't be considered freaks - they would be normal people, which is what they are.Dawn, Bedford
People's capacity for unkindness is truly shocking.Gerry, Exeter, England
People's capacity for unkindness is truly shocking.Gerry, Exeter, England
Perhaps it could help to try to stop being so aware of how people around you are reacting. You are looking for things that often are not there. How often does someone glance at a person and look away for many different reasons that facial disfigurement? Many of us are a bit "unusual" or "interesting" to another person in some way.Judy, Bromley, UK
Perhaps it could help to try to stop being so aware of how people around you are reacting. You are looking for things that often are not there. How often does someone glance at a person and look away for many different reasons that facial disfigurement? Many of us are a bit "unusual" or "interesting" to another person in some way.Judy, Bromley, UK
