Well, at least I think it's part 7; after a while it gets hard to remember!
Anyway, as I've already mentioned--another thing I learned about at the conference was: Switchfoot. They're a great musical group. Their music is not overtly religious. But it is spiritual. And they try to say something in their songs. One song of theirs I heard at the conference has lyrics that I think really speak to those of us with Moebius Syndrome; and really they speak to anyone who has physical differences. It's from their song "Who We Are." I'm just going to focus on a few lines. Here we go:
"They said it's complicated"
And it is. No doubt, having Moebius Syndrome complicates your life. It can make some things harder and more difficult--in speaking, in swallowing, etc.
"They said we'd never make it this far
But we are"
But--exactly! How often at the conferences have we heard that. Parents of Moebius children come up to us. And so many of them say--the doctors said we'd never meet anyone else with Moebius. They said my child would never talk. They said he or she wouldn't survive. They said he or she wouldn't go to school. But Moebius children do all of those things.
"They said the fight would break us
But the struggle helped to make
Who we are"
There are many who doubt us. There are many who, upon first seeing us and meeting us, assume that we must have an intellectual disability. Some look down upon us. Some are prejudiced against us.
So sometimes we have to struggle. But we overcome. We achieve. And maybe it's true--the struggle makes us better. It makes us tougher. No one is better at adapting to things than we are.
And now--now, our network has grown. And we have each other too. And so it's not just a situation where "I" have Moebius Syndrome. Now there's a we. There's an us. And we all have things in common. And that helps us too.
Thanks, Switchfoot, for putting these ideas into some simple, but powerful, words.
Tuesday, July 29, 2014
Monday, July 28, 2014
WHAT I LEARNED AT THE CONFERENCE: part 6
For the next couple of days, I'm going to talk about a couple of new and interesting (to me, at least) thoughts and sayings I learned about via the conference. These thoughts said a lot to me.
First, there was Rick Guidotti, and all his work through Positive Exposure, the FRAMES project, and the Pearls Project. Rick has a great saying: Change how we see...and see how we change."
And of course a lot of what his talking about is the concept of "beauty." I think most in society see beauty as skin deep. They believe in the kind of beauty that Hollywood and television and fashion sells: that beauty is about high cheekbones, smooth skin, full hair, a certain kind of lip, certain kinds of muscles, a certain kind of waistline, etc etc. Few differences are allowed. Nothing that is seen as un-"normal" can be tolerated. So of course, if you have Moebius Syndrome, or Albinism (a condition which Rick first saw years ago and helped turn him to his new life) you are not seen as beautiful. It's assumed that you have no beauty, that such can not be brought out in you, that people would not want to see you.
Rick Guidotti of course knows that such is not true. And through his photos, and through his films, he shows that all those with physical and facial differences are in fact beautiful; that instead of turning away, you just have to see these folks as they really are and get to know them. That all we have to do, in fact, to see their beauty is to "change how we see."
But he does not stop there. And this kind of thinking does not stop there. Because what we also get at here is that we find that, if we do change what we see, we won't believe the good things it will do...to us. If we change how we see, then we see that all humans, even if they look different, have beauty; that we should accept all; that all have lives and deserve them; that we shouldn't turn away from anyone, even if they look different. We will become more accepting. We will become more tolerant, more open. We will become better people. So, if we change how we see...then just see how we change. And become better.
Really, in trying to raise awareness, that's one of the things that we in the Moebius community have been trying to tell people. Maybe we just haven't quite known how to say it before. But this is an excellent way to in fact say it. Hey, world--change how you see everyone with physical and facial differences. And then--see how you change. For the better. Thanks, Rick.
***********************************************
First, there was Rick Guidotti, and all his work through Positive Exposure, the FRAMES project, and the Pearls Project. Rick has a great saying: Change how we see...and see how we change."
And of course a lot of what his talking about is the concept of "beauty." I think most in society see beauty as skin deep. They believe in the kind of beauty that Hollywood and television and fashion sells: that beauty is about high cheekbones, smooth skin, full hair, a certain kind of lip, certain kinds of muscles, a certain kind of waistline, etc etc. Few differences are allowed. Nothing that is seen as un-"normal" can be tolerated. So of course, if you have Moebius Syndrome, or Albinism (a condition which Rick first saw years ago and helped turn him to his new life) you are not seen as beautiful. It's assumed that you have no beauty, that such can not be brought out in you, that people would not want to see you.
Rick Guidotti of course knows that such is not true. And through his photos, and through his films, he shows that all those with physical and facial differences are in fact beautiful; that instead of turning away, you just have to see these folks as they really are and get to know them. That all we have to do, in fact, to see their beauty is to "change how we see."
But he does not stop there. And this kind of thinking does not stop there. Because what we also get at here is that we find that, if we do change what we see, we won't believe the good things it will do...to us. If we change how we see, then we see that all humans, even if they look different, have beauty; that we should accept all; that all have lives and deserve them; that we shouldn't turn away from anyone, even if they look different. We will become more accepting. We will become more tolerant, more open. We will become better people. So, if we change how we see...then just see how we change. And become better.
Really, in trying to raise awareness, that's one of the things that we in the Moebius community have been trying to tell people. Maybe we just haven't quite known how to say it before. But this is an excellent way to in fact say it. Hey, world--change how you see everyone with physical and facial differences. And then--see how you change. For the better. Thanks, Rick.
***********************************************
Friday, July 25, 2014
WHAT I LEARNED AT THE CONFERENCE: part 5
You know, another thing I think I learned at this year's conference is simply this: I learned just how important these conferences really are.
What I mean is this: the conference is such a good, powerful, emotional experience for those with Moebius. Finally they can be around people like them. They can talk to others who know exactly what we all go through every day. You don't have to be afraid that someone is going to stare at you, or that another is going to wonder what's "wrong" with you. At the conference, if you have Moebius, you are kind of the "normal" one, for a change!
And of course, there's even more than that. The conference is about the families of those with Moebius too. It's about their siblings, their parents, their grandparents. And for them too, the conference is an amazing thing. They get to talk with other moms and dads about their struggles, their achievements, and their joys of being Moebius parents and grandparents. They get to share information. They get to learn things. They get to be around other people who, again, know exactly what they are going through.
Maybe I have been getting information from an unrepresentative sample, I don't know. But based on the people I've talked to, and all the comments and posts I've been reading on Facebook, it seems like this conference had such a great, positive effect on so many people. I think we're all excited about that.
And it just makes me think: we have just got to find a way to get more people to these conferences. What I mean is: we need to find more ways to help people find a way there. Let's face it--attending the conference is not cheap. Plane fares are expensive, and then there's the expenses of hotels, food, etc. Most people aren't rich. That's something we really have to think about and try to work on. We want as many people as possible to be able to benefit from the conference. In the meantime, we're so glad to many got a lot out of this one.
What I mean is this: the conference is such a good, powerful, emotional experience for those with Moebius. Finally they can be around people like them. They can talk to others who know exactly what we all go through every day. You don't have to be afraid that someone is going to stare at you, or that another is going to wonder what's "wrong" with you. At the conference, if you have Moebius, you are kind of the "normal" one, for a change!
And of course, there's even more than that. The conference is about the families of those with Moebius too. It's about their siblings, their parents, their grandparents. And for them too, the conference is an amazing thing. They get to talk with other moms and dads about their struggles, their achievements, and their joys of being Moebius parents and grandparents. They get to share information. They get to learn things. They get to be around other people who, again, know exactly what they are going through.
Maybe I have been getting information from an unrepresentative sample, I don't know. But based on the people I've talked to, and all the comments and posts I've been reading on Facebook, it seems like this conference had such a great, positive effect on so many people. I think we're all excited about that.
And it just makes me think: we have just got to find a way to get more people to these conferences. What I mean is: we need to find more ways to help people find a way there. Let's face it--attending the conference is not cheap. Plane fares are expensive, and then there's the expenses of hotels, food, etc. Most people aren't rich. That's something we really have to think about and try to work on. We want as many people as possible to be able to benefit from the conference. In the meantime, we're so glad to many got a lot out of this one.
Thursday, July 24, 2014
WHAT I LEARNED AT THE CONFERENCE: part 4
I also learned about Rick Guidotti. He's an amazing story. He used to be a very big fashion photographer. But he's changed--and now he's out to help society kind of re-define how they see beauty. I and my family met Rick, he and his crew filmed us, he did a brief photo-shoot of us, and he did the same for many others at the Moebius Syndrome Foundation conference, all to help with his latest project. And he is such an unbelievable human being, so full of energy and compassion for everyone. It was a joy to work with him.
But first, let's talk about the organization Rick has founded, and then I'll have more to say below; his organization is called Positive Exposure. What's it all about?
******************************
Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti. Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure.It has always been about beauty for Rick. “In fashion I was always frustrated because I was told who I had to photograph. I was always told who was beautiful.” It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path? How do you get people to see those with differences not as victims, but kids and people first and foremost? The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.
The photos give people the permission to see beauty and interpret beauty in their own right. Not to see beauty that is dictated by industry’s ideas of what is acceptable. What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.
Our Mission:
Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism. Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.
The statistics to support our work are staggering. With one out of five children in the United States being born with a disability, the need for society to understand and respect children and adults living with genetic, physical and behavioral differences is critical.
Our programs:
Also, Rick is now involved further in something called the FRAMES project. That was why he was photographing and filming so many of us at the conference. His project will create a short video on Moebius Syndrome that will be available online, and will be especially aimed at audiences of medical professionals. It will help explain Moebius Syndrome, and make people understand that it is about people; that we with it are not simply objects to be studied.
I know Rick will do a great job, and it's an honor for all of us to work with him. If any of you ever have a chance to meet Rick and to work with him, do it. You'll be glad you did.
But first, let's talk about the organization Rick has founded, and then I'll have more to say below; his organization is called Positive Exposure. What's it all about?
******************************
Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti. Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.
So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure.It has always been about beauty for Rick. “In fashion I was always frustrated because I was told who I had to photograph. I was always told who was beautiful.” It became clear to him that it was essential for people to understand and see the beauty in our shared humanity. But how? How do you lead people down a different path? How do you get people to see those with differences not as victims, but kids and people first and foremost? The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.
The photos give people the permission to see beauty and interpret beauty in their own right. Not to see beauty that is dictated by industry’s ideas of what is acceptable. What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.
Our Mission:
Positive Exposure utilizes photography and video to transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism. Our educational and advocacy programs reach around the globe to promote a more inclusive, compassionate world where differences are celebrated.
The statistics to support our work are staggering. With one out of five children in the United States being born with a disability, the need for society to understand and respect children and adults living with genetic, physical and behavioral differences is critical.
Our programs:
- Photo shoots, interviews, and self-esteem workshops to empower people living with difference. (Image)
- Lectures and workshops targeting medical schools, corporations, nursing and genetic counseling programs, universities, elementary and secondary schools worldwide.
- The Pearls Project, an interactive, educational program for K-12 students, teachers, and healthcare providers.
- Image Database for print and media.
- Media Campaigns.
- Multi Media Exhibitions.
Also, Rick is now involved further in something called the FRAMES project. That was why he was photographing and filming so many of us at the conference. His project will create a short video on Moebius Syndrome that will be available online, and will be especially aimed at audiences of medical professionals. It will help explain Moebius Syndrome, and make people understand that it is about people; that we with it are not simply objects to be studied.
I know Rick will do a great job, and it's an honor for all of us to work with him. If any of you ever have a chance to meet Rick and to work with him, do it. You'll be glad you did.
Wednesday, July 23, 2014
WHAT I LEARNED AT THE CONFERENCE: part 3
I also attended a session that was just for adults with Moebius Syndrome. It was called the "Just for Adults" meeting (we also had similar sessions that were Just for Moms (moms of children with Moebius), Just for Dads, and Just for Grandparents. And in two years, we might just add a session that would be just for the siblings of children with Moebius. These meetings are very popular and help people a lot.
In the Just for Adults session, which was led by my esteemed colleague Matthew Joffe, what we did was sit around in a big circle, and the session was opened up and anyone could bring up any topic they wanted to bring up, and all could say whatever they wanted to say. I tried to listen very carefully to what everyone brought up, and so this is what I learned:
1] So much of having Moebius Syndrome as an adult is about adapting. It's about adapting to your life, to your circumstances, to whatever life throws your way. Of course, having Moebius means it is very difficult for us to show facial expression. But we want to be able to do so. We want to smile. So some us seek the smile surgery; and while that isn't for everybody, if you do want it, we agreed that we'd encourage you to get it. Some of us have a hard time, in our eyes, of creating tears. We suffer from dry eyes. But we heard how there are minor surgeries that you can get and products that you can use that can help you with that. Moebius Syndrome affects people differently. We don't all have dry eyes. But no matter what, we are all adapting, and doing so very well, every day.
2] Some had never met anyone else with Moebius Syndrome before. But now they had. And it was an overwhelming, but outstanding experience, for all involved, we all agreed. For many of us who are older, when we were in our teens and 20s, we thought we were the only ones. We thought we were alone, that nobody else looked like us. We all agree we're so fortunate enough to have these conferences and to able to connect with each other on social media. We are not alone.
3] And finally, I think we all agreed that we can. That is, that we can go out, we can accomplish things, that nothing need hold us back. We are people who have jobs, and who have been successful at them; we are teachers, we are managers, we attend college, we are going to graduate school, we're successful photographers, we're doing it all. And you can do it too. You deserve a life. You will have a life.
At the end of the conference, we had a slideshow of pictures taken there; and the last song playing along with the pics was Switchfoot's "Who We Are." And you know--some of the lyrics from that song sums up us Moebius folks quite well. Here's an excerpt of the lyrics from that song:
They said it's complicated
They said we'd never make it this far
But we are
They said the fight would break us
But the struggle helped to make
Who we are
Who we are
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
Who we are
(in the fever of our youth)
Who we are
(We've got nothing left to lose)
Who we are
(There's still time enough to choose)
Who we are
Who we are
Who we are
Who we are
(I wanted something with meaning)
Who we are
(Yeah I wanted something to believe in)
Who we are
(Yeah, sure as I'm here breathing)
Who we are
(I wanted more)
Who we are
(Yeah, I wanted more)
Who we are
(Yeah, I wanted more than just a feeling)
Who we are
Who we are
(Yeah, for more than just a season)
Who we are
Who we are
(Yeah, we become what we believe in)
Who we are
In the Just for Adults session, which was led by my esteemed colleague Matthew Joffe, what we did was sit around in a big circle, and the session was opened up and anyone could bring up any topic they wanted to bring up, and all could say whatever they wanted to say. I tried to listen very carefully to what everyone brought up, and so this is what I learned:
1] So much of having Moebius Syndrome as an adult is about adapting. It's about adapting to your life, to your circumstances, to whatever life throws your way. Of course, having Moebius means it is very difficult for us to show facial expression. But we want to be able to do so. We want to smile. So some us seek the smile surgery; and while that isn't for everybody, if you do want it, we agreed that we'd encourage you to get it. Some of us have a hard time, in our eyes, of creating tears. We suffer from dry eyes. But we heard how there are minor surgeries that you can get and products that you can use that can help you with that. Moebius Syndrome affects people differently. We don't all have dry eyes. But no matter what, we are all adapting, and doing so very well, every day.
2] Some had never met anyone else with Moebius Syndrome before. But now they had. And it was an overwhelming, but outstanding experience, for all involved, we all agreed. For many of us who are older, when we were in our teens and 20s, we thought we were the only ones. We thought we were alone, that nobody else looked like us. We all agree we're so fortunate enough to have these conferences and to able to connect with each other on social media. We are not alone.
3] And finally, I think we all agreed that we can. That is, that we can go out, we can accomplish things, that nothing need hold us back. We are people who have jobs, and who have been successful at them; we are teachers, we are managers, we attend college, we are going to graduate school, we're successful photographers, we're doing it all. And you can do it too. You deserve a life. You will have a life.
At the end of the conference, we had a slideshow of pictures taken there; and the last song playing along with the pics was Switchfoot's "Who We Are." And you know--some of the lyrics from that song sums up us Moebius folks quite well. Here's an excerpt of the lyrics from that song:
They said it's complicated
They said we'd never make it this far
But we are
They said the fight would break us
But the struggle helped to make
Who we are
Who we are
1 2 3 4 5
1 2 3 4 5
1 2 3 4 5
Who we are
(in the fever of our youth)
Who we are
(We've got nothing left to lose)
Who we are
(There's still time enough to choose)
Who we are
Who we are
Who we are
Who we are
(I wanted something with meaning)
Who we are
(Yeah I wanted something to believe in)
Who we are
(Yeah, sure as I'm here breathing)
Who we are
(I wanted more)
Who we are
(Yeah, I wanted more)
Who we are
(Yeah, I wanted more than just a feeling)
Who we are
Who we are
(Yeah, for more than just a season)
Who we are
Who we are
(Yeah, we become what we believe in)
Who we are
Tuesday, July 22, 2014
WHAT I LEARNED AT THE CONFERENCE: part 2
So what else did I learn at this year's Moebius Syndrome Foundation conference, held in North Bethesda, Maryland, just concluded?
Well, let me write a bit about what some people may think is a surprising topic: service dogs.
I went to a conference session led by Natalie Abbott. Natalie is an important member of our Moebius community. She has Moebius Syndrome. She is a member of our Moebius Syndrome Foundation board; and she helps coordinate and lead our activities on social media. Natalie also has a service dog. And so that was the topic of her conference session. There were also 3 other people participating in the session, from a local organization that helps provide people who need them with service dogs.
Many people I suspect have the wrong idea about service dogs. Not that they think there is anything wrong with them. Most people love service dogs, and can't wait to pet them (even when perhaps they shouldn't; I sometimes am guilty of that!) But I suspect many think service dogs are only for those who are pretty much completely blind and deaf.
They are not. Service dogs can be for anyone--as long, that is, as you have a kind of disability in which you need a service dog to help you complete certain specific tasks.
So, for example: if you have Moebius Syndrome, and you live with various physical pain and other physical limitations, a service dog can help you with certain things. If you drop your keys, a service dog can pick them up for you. If you go out to get the mail, your dog can get the mail for you and hold on to it until you get back into your apartment or house. When you're walking down the street or wherever you happen to be, your service dog can help you maintain your balance.
And of course, in general, your service dog can help you integrate better in society and have better acceptance from others. Because, even though perhaps you look different and sound different (if for example you have Moebius), if you have a service dog with you, people will be interested in your dog and be more willing to interact with you because of that. They'll come up to you and want to talk to you about your dog. They will want to pet him or her. And thus they will meet you.
There are certain things to remember, though. 1] You cannot get a service dog ONLY for the purpose of getting other people to like you and talk to you. As the joke went: if you're a young man, you can't just get a working dog to help you meet women! You must need the dog to perform certain specific tasks for you. 2] In addition, it is not an easy process to get a service dog. You have to apply. There will be several different interview processes. You have to be trained. You have to qualify for a dog. The process of acquiring a service dog usually takes at least a year.
But the bottom line is: if you have Moebius Syndrome, or other kinds of differences or disabilities, you may very well qualify to get a service dog. You may want to look into it. So this was a very interesting session, and I learned a lot from it. Oh, and by the way--Cassius, who is Natalie's service dog, is very, very smart and very handsome. It was great to meet him!
Well, let me write a bit about what some people may think is a surprising topic: service dogs.
I went to a conference session led by Natalie Abbott. Natalie is an important member of our Moebius community. She has Moebius Syndrome. She is a member of our Moebius Syndrome Foundation board; and she helps coordinate and lead our activities on social media. Natalie also has a service dog. And so that was the topic of her conference session. There were also 3 other people participating in the session, from a local organization that helps provide people who need them with service dogs.
Many people I suspect have the wrong idea about service dogs. Not that they think there is anything wrong with them. Most people love service dogs, and can't wait to pet them (even when perhaps they shouldn't; I sometimes am guilty of that!) But I suspect many think service dogs are only for those who are pretty much completely blind and deaf.
They are not. Service dogs can be for anyone--as long, that is, as you have a kind of disability in which you need a service dog to help you complete certain specific tasks.
So, for example: if you have Moebius Syndrome, and you live with various physical pain and other physical limitations, a service dog can help you with certain things. If you drop your keys, a service dog can pick them up for you. If you go out to get the mail, your dog can get the mail for you and hold on to it until you get back into your apartment or house. When you're walking down the street or wherever you happen to be, your service dog can help you maintain your balance.
And of course, in general, your service dog can help you integrate better in society and have better acceptance from others. Because, even though perhaps you look different and sound different (if for example you have Moebius), if you have a service dog with you, people will be interested in your dog and be more willing to interact with you because of that. They'll come up to you and want to talk to you about your dog. They will want to pet him or her. And thus they will meet you.
There are certain things to remember, though. 1] You cannot get a service dog ONLY for the purpose of getting other people to like you and talk to you. As the joke went: if you're a young man, you can't just get a working dog to help you meet women! You must need the dog to perform certain specific tasks for you. 2] In addition, it is not an easy process to get a service dog. You have to apply. There will be several different interview processes. You have to be trained. You have to qualify for a dog. The process of acquiring a service dog usually takes at least a year.
But the bottom line is: if you have Moebius Syndrome, or other kinds of differences or disabilities, you may very well qualify to get a service dog. You may want to look into it. So this was a very interesting session, and I learned a lot from it. Oh, and by the way--Cassius, who is Natalie's service dog, is very, very smart and very handsome. It was great to meet him!
Monday, July 21, 2014
WHAT I LEARNED AT THE CONFERENCE: part 1
So as most of you probably know, I haven't blogged for the past few days because I was at our bi-annual Moebius Syndrome Foundation Conference 2014, this time held in North Bethesda, Maryland. It was a wonderful, moving experience--as always. I met some new, terrific people--as always. And I re-connected with great people who I am proud to say are my friends, and there is nothing so terrific as that.
And as always, I learned a great deal. So let me in the next few days write and muse about just what I learned. First of all: we had an excellent opening keynote speaker, on the conference's first day. His name was James Partridge, and he leads an organization from the UK called Changing Faces. Here's some more about him, which I found here:
****************************************
is the Founder and Chief Executive of Changing Faces.
When he was 18 James Partridge was severely burned in a car fire that changed his face, and his life, forever.
After a period of recovery in intensive care, James spent a gruelling ‘gap year’ in hospital having reconstructive surgery for the 40% burns to his face and body, before going up to Oxford as planned. Every vacation and the whole of his third year were then sacrificed to the surgeon’s knife, before he graduated in politics, philosophy and economics in 1975. He embarked on a Masters in Demography at the London School of Hygiene and Tropical Medicine, which led on to academic appointments in health economics at St Thomas’ Hospital and at Guy’s Hospital, London.
In 1979, he exchanged academia for farming and a teaching post in A’ level economics, in Guernsey, where his wife, Caroline, was born and brought up.
James was determined that the unique insights gained during his prolonged recovery should be put to positive use, so early mornings in the milking parlour were interspersed with periods of writing, culminating in the publication by Penguin of his book Changing Faces, the Challenge of Facial Disfigurement in 1990.
The warm response to this led him to relinquish life as a dairy farmer to found Changing Faces in 1992 to pass on the lessons learned, and to work for the rights and inclusion of people with facial and body disfigurements.
The charity has, from the outset, been underpinned and informed by academic evidence and research. It partnered the University of the West of England, Bristol, in setting up the first Centre for Appearance Research in 1998, which is now a fully-fledged research centre with 28 attached academics. The University recognised James’ contribution to academic research by granting him an Honorary Doctorate of Science in 1999.
As well as directing Changing Faces, James has served on many committees and panels bringing disability, human rights, user, consumer and lay perspectives to bear on a range of subjects. He is also a founding partner of Dining with a Difference, which aims to challenge and change the way chief executives and directors of private and public organisations address disability as a strategic business issue. Over the years Dining has made a major impact on the thinking of organisations such as the Royal Mail, Barclays and Jobcentre Plus.
*********************************
So what does Changing Faces try to do? Here's an excerpt, found here:
Welcome to Changing Faces. We’re a charity for people and families who are living with conditions, marks or scars that affect their appearance.
Our work is divided into two areas:
Changing Lives
We aim to help individuals lead full, confident and satisfying lives. We give practical and emotional support to adults, children and their families. We also provide training, support and advice to professionals in health and education.
Changing Minds
We aim to transform public attitudes towards people with an unusual appearance. Our goal is 'face equality' and we promote fair treatment and equal opportunities for all, irrespective of how they look. We campaign for social change: lobbying for integrated health services; influencing schools and workplaces to create more inclusive environments; and pushing for anti-discrimination protection and enforcement.
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And something that really interests me is Changing Faces' "Face Equality" campaign. Here's more:
Changing Faces launched the Face Equality on Film campaign in 2012 calling for balanced portrayals of people with disfigurements in films.
More than a million cinema goers were invited to challenge their assumptions about a character in a short film called ‘Leo’ starring actress, Michelle Dockery, and Leo Gormley, a man with burn scars. The film was shown in 750 Odeon cinemas nationwide.
A YouGov survey commissioned by the charity found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil or villainous character in a film. Ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.
James Partridge, CEO of Changing Faces, said: “We’re so used to seeing people with disfigurements portrayed as the villain in films that it may be hard for people to imagine they could ever play someone’s friend, the Dad picking up his kids from school, the US President, or a lover.
“It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed.
“The problem is that, for those who actually do have facial scars or whose faces are asymmetrical as a result of cancer, strokes or birth conditions, the way that people react in the cinema can spill over into the way they are treated in everyday life. It can encourage people to make moral judgements based on what they see on the screen.
“Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life. Changing Faces hopes the film and campaign will encourage audiences and the wider film industry to think about how disfigurement can be portrayed in a more balanced way.”
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And here is a link to their short film called "Leo."
These are all things we need to think about. Check out Changing Faces' website. It is very valuable.
And as always, I learned a great deal. So let me in the next few days write and muse about just what I learned. First of all: we had an excellent opening keynote speaker, on the conference's first day. His name was James Partridge, and he leads an organization from the UK called Changing Faces. Here's some more about him, which I found here:
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is the Founder and Chief Executive of Changing Faces.
When he was 18 James Partridge was severely burned in a car fire that changed his face, and his life, forever.
After a period of recovery in intensive care, James spent a gruelling ‘gap year’ in hospital having reconstructive surgery for the 40% burns to his face and body, before going up to Oxford as planned. Every vacation and the whole of his third year were then sacrificed to the surgeon’s knife, before he graduated in politics, philosophy and economics in 1975. He embarked on a Masters in Demography at the London School of Hygiene and Tropical Medicine, which led on to academic appointments in health economics at St Thomas’ Hospital and at Guy’s Hospital, London.
In 1979, he exchanged academia for farming and a teaching post in A’ level economics, in Guernsey, where his wife, Caroline, was born and brought up.
James was determined that the unique insights gained during his prolonged recovery should be put to positive use, so early mornings in the milking parlour were interspersed with periods of writing, culminating in the publication by Penguin of his book Changing Faces, the Challenge of Facial Disfigurement in 1990.
The warm response to this led him to relinquish life as a dairy farmer to found Changing Faces in 1992 to pass on the lessons learned, and to work for the rights and inclusion of people with facial and body disfigurements.
The charity has, from the outset, been underpinned and informed by academic evidence and research. It partnered the University of the West of England, Bristol, in setting up the first Centre for Appearance Research in 1998, which is now a fully-fledged research centre with 28 attached academics. The University recognised James’ contribution to academic research by granting him an Honorary Doctorate of Science in 1999.
As well as directing Changing Faces, James has served on many committees and panels bringing disability, human rights, user, consumer and lay perspectives to bear on a range of subjects. He is also a founding partner of Dining with a Difference, which aims to challenge and change the way chief executives and directors of private and public organisations address disability as a strategic business issue. Over the years Dining has made a major impact on the thinking of organisations such as the Royal Mail, Barclays and Jobcentre Plus.
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So what does Changing Faces try to do? Here's an excerpt, found here:
Welcome to Changing Faces. We’re a charity for people and families who are living with conditions, marks or scars that affect their appearance.
Our work is divided into two areas:
Changing Lives
We aim to help individuals lead full, confident and satisfying lives. We give practical and emotional support to adults, children and their families. We also provide training, support and advice to professionals in health and education.
Changing Minds
We aim to transform public attitudes towards people with an unusual appearance. Our goal is 'face equality' and we promote fair treatment and equal opportunities for all, irrespective of how they look. We campaign for social change: lobbying for integrated health services; influencing schools and workplaces to create more inclusive environments; and pushing for anti-discrimination protection and enforcement.
**********************************
And something that really interests me is Changing Faces' "Face Equality" campaign. Here's more:
Changing Faces launched the Face Equality on Film campaign in 2012 calling for balanced portrayals of people with disfigurements in films.
More than a million cinema goers were invited to challenge their assumptions about a character in a short film called ‘Leo’ starring actress, Michelle Dockery, and Leo Gormley, a man with burn scars. The film was shown in 750 Odeon cinemas nationwide.
A YouGov survey commissioned by the charity found that bad teeth, scars, burns and other conditions affecting the face are viewed as the most common indicators of an evil or villainous character in a film. Ethnic minorities, bald and disabled people are all thought to be portrayed in more diverse ways than those with disfigurements.
James Partridge, CEO of Changing Faces, said: “We’re so used to seeing people with disfigurements portrayed as the villain in films that it may be hard for people to imagine they could ever play someone’s friend, the Dad picking up his kids from school, the US President, or a lover.
“It would seem as if all the film industry has to do to depict evil and villainy is apply a scar or a prosthetic eye socket or remove a limb and every movie goer knows that it’s time to be suspicious, scared or repulsed.
“The problem is that, for those who actually do have facial scars or whose faces are asymmetrical as a result of cancer, strokes or birth conditions, the way that people react in the cinema can spill over into the way they are treated in everyday life. It can encourage people to make moral judgements based on what they see on the screen.
“Freddie Krueger, Scarface and Two-Face are just some of the names that our clients get called at school, on the street and at work. They have to put up with people laughing at them, recoiling, running away or staring in disbelief that they can and do live a normal life. Changing Faces hopes the film and campaign will encourage audiences and the wider film industry to think about how disfigurement can be portrayed in a more balanced way.”
********************************************
And here is a link to their short film called "Leo."
These are all things we need to think about. Check out Changing Faces' website. It is very valuable.
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