The Importance of Facial Equality

After reading your article, I found you to be a beautiful person inside. After googling your image, I found you to be just as beautiful outside. Thank you for sharing.

Thank you for your article about Crouzon syndrome and your struggles. I look forward to sharing your words with my children. I too saw a picture of you online. You are beautiful and obviously smart and articulate. Keep on loving yourself and maintain that confidence that so many of us lack.

It's amazing how many people make comments to friends about strangers appearance. Their face, their weight, their clothes. It's a hobby to them, picking someone out of a crowd and having some fun. I had a couple co-workers that enjoyed this sport regulaly. We were in a bar after work and these two started in on a stranger. I told them some day you're going to mess with the wrong person. Guy didn't take it for long and invited them ouside. They accepted. Two on one and with in seconds both had it handed to them.

Sad thing in cases like this we say there's no reason for violence. Of course there is. We just shouldn't practice it. Just sometimes it's fun to celebrate when it turns out well for the underdog.

What do you think? If someone stepped in and defended her? Would she feel better?

Ariel Heneley, i googled your pic and even though you have long hair you look like a an adorable pixie with mischief in your face. Be strong. Best always.

I have a skin disease which usually frightens people and makes them mistakenly assume I am contagious or just dirty/disgusting. I have lived with this my whole life and became a psychologist so I could help people who also suffer with a physical appearance that is different and/or disturbing to others.

Please don't give up on therapists. There are some of us out here who definitely understand the stigma.

There are so many medical conditions that create these social problems...

It's so important that we stop using labels to define standards of ...most everything! More or less loving, thoughtful, beautiful, happy, etc. it really messes everyone up! The more we consciously choose not to define other people, the freer we are to be ourselves, and that leads to lots of love.

It's not a good day or a bad day, it's just a day. Sometimes it rains and you might prefer the sun, but that doesn't make the day a 'bad day'.

This might be a teeny bit off topic, but should we all expect to be represented in mainstream media ("People with Crouzon syndrome and other conditions that result in facial disfigurements are not represented in mainstream media.")? Maybe the point was more that being purposefully excluded isn't good, and that's true.
But, I hope mainstream media will not be the final arbiter of whether I should love myself or not.

Thank you for sharing...it's important and I appreciate it.

"It was at moments such as these that Joseph recognized the face of God in human form... it glimmered in their kindnesses to him. ...
And if you do this, if you just act a little kinder than necessary, someone else, somewhere, someday, may recognize in you... the face of God."

R. J. Palaccio, Wonder

Thank you for your powerful statement. This might not help you, but I believe there are many kinds of disfigurement many of them internal that the people who do not see you as any other human being suffer from. they are the bullies I use that term broadly, who snear at others but hide their smallness. Your suffering lifts you up far above them.

Personally I am almost blind and I can not see you, but I feel your life through your powerful words. When I was young I was misdiagnosed as someon who had a learning problem and people ridiculed me for this. I was not diagnosed with severe glaucoma until I went to the draft board and the eye doctor sent me to a specialist. I missed Vietnam because of that. The internal suffering one goes through is sometimes far worse than the outer ones.

Good luck and God speed.

"...truly viewed as a valuable addition to society. Because we are."

Bingo!

Thank you for this meaningful look into the minds of "the stupids" who fear differences in other humans. They must not have had proper upbringing, if they can't accept others as having real value in society. Everyone has worth.

Your lovely and insightful story reminds me why I am a #nevertrump person. Trump is a deplorable person who judges people based on their looks. My father is in a wheelchair and disabled. I applaud you for this impactful article.

Life isn't fair, that's for sure. But of course it's not life's fault that some people respond the way they do to it. In that I mean the people who take for granted their own blessings. I know it sounds cliche to say this, but when one does have a disability, it can afford us an empathy for others that many will ever get to feel. Maybe the payoff from that is not equal to the loss, but it's still better than nothing.

I googled the author after reading this. My dear, you are not ugly, and that is not a platitude. You're actually cute. I would not have described you as disfigured, either.

Thank you, Ariel. We need more unapologetic people like yourself. When we don't seek validation in the eyes of others, we can give the love that this world needs. The people who are uncomfortable with your existence are uncomfortable with themselves. May your self-love and fearlessness help to heal us all.

Here in Cleveland right on the lake there is a large wind turbine near downtown. There aren't many in our area, so when I drive by it, I can't help but looking at it - how it works, how fast it moves, and its position high above the ground. I use the turbine as an example for my daughter who is an above-knee amputee. She was born missing most of the bones in her right leg, and her hip never fully developed. When people see her, an 11-year old girl walking awkwardly with a prosthetic limb that juts out to the side, they can't help but stare: they are seeing something they don't see very often.

While I agree with this article, and while I cannot justify any form of bullying and prejudice against the disabled, I truly believe that most people want to be as supportive as they can. They stare because they are unfamiliar and uncomfortable with what they don't know. Giving the disabled a voice (as this article does) is helpful; what are really needed are personal, real-life relationships with people different from ourselves

Most of us don't fit the fashion-magazine image of beauty, male or female. The air-brushed ideal is plastic. As we get older, travel widely, and meet all kinds of people who aren't like us, we come to understand the superficiality of physical imperfections and disfigurements, to accept them in ourselves and look beyond them in others. In a civil society, we teach our children early to do the same, giving them opportunities for a variety of experiences and friendships and showing them by example how to be courteous and empathetic.
As you know, yours is an unusual face, an elfin face. And I hope you also know what a lovely person shines through.

This really resonated with me.

As a girl and woman living with a severe form of PCOS, I have experienced with my body what you have with your face, minus the surgeries. I can remove the heavy body hair and dress to cover the stretch marks, but nothing hides the fact that I'm 300lbs in a society where fat people are uncommon. I've experienced the bullying, the stares, the obviously intentional looking away, the job discrimination, the therapists unable to relate, and the assumptions about my life and experiences. I spent decades doing violence to my own body in an attempt to look a little more like 'regular' people -- people who could walk down a street unnoticed, who could be welcomed into groups, who could be loved, even desired. (But I am still lucky; so many like me fall victim to bariatric surgery, to fatal complications of eating disorders, to suicide.)

I, too, dream of a world where physical diversity is not hated, feared, or stigmatized, but embraced as part of the remarkable human species.

I work with people with disabilities and ever fascinated with medicine and science, I Google anything I've never heard of before.

Then I Googled you.

Your cute, as strangers would tell my younger sister, as a button.

Love your essay. You gave us all something to think about. Also love your way of thinking.

I admire your writing and your honesty. I suppose one aspect of your experience moved me more deeply than anything, having no one to share one's experience with. It makes me a bit angry that the world is this way. There's a certain coldness, superficiality that humans seemed to be either hard wired with or have been conditioned to this state.
I was born with a different experience one I had no part in and want no credit for. I lived a life being gazed at, fussed over, chosen, sought after, praised, for absolutely nothing but the way I look. I'm a guy and I understand people mostly mean well. But that attention has bothered me my entire life. But what I've tried to control more than anything is my rage at the people bestowing me with this special attention simply because of how genes fell together. Regardless of any decency, kindness, loyalty, generosity, warmth, love, humor, that are as much of me as the color of my eyes, these qualities seem to be overlooked, ignored in favor of how I look. It's isolating. There is no one who would quite understand because of a simple fact, I've benefited in life due to this situation. How can one complain? It's complex. I identify in a clear way with all you have written here, though I'm on the other side of it. But, your intelligence, insight and beauty in expressing yourself tells me I'd certainly rather have a friend like you than the next stranger gazing at me without knowing a thing about me.

At the urging of our three young sons, my husband and I are watching Game of Thrones.

GoT ain't my usual cup of tea (too much squishy sound effect violence!), but it's been fun watching a tv program en famille.

I was just telling my sons about how much I value the opportunity of becoming a fan of the terrific actor Peter Dinklage.

Born with a form of dwarfism, Dinklage plays a main character in GoT. His story line includes a complicated quest for survival and power, woven with very personal struggles about living with his condition.

Dinklage is such a fine actor that he's expanded my world - I feel grateful to have come to know, enjoy, and admire him.

How does a guy from New Jersey nail that high-falutin' British accent so well?

Talk about talent!

You look a lot better than us older ladies do. We all become invisible somewhere just past menopause. At least you will have had some understanding of that along the way. I pity the beauties whose life ends after the high school senior prom.

Wow, Ariel. I should look like you. Sorry but I can't relate to the problem. You look lovely.

Please, when you meet me in a store, on the street or wherever, give me a moment to get over that little startle refle, before I meet your eyes and say Hello. I'm fascinated by other people in all their diversity and believe that each of us is beautiful and worthy of respect.

I just want to thank the writer for her graceful prose and for the chance to see the world through her eyes.

Thank you for writing this. I consider myself a well meaning person and try to behave as such, but it is not always easy to know how, especially when confronting something new with no time to consider my reaction . Your beautiful and inspiring essay will help me and others respond better when confronting a disfigured person, which I know was your goal. You have the strength of a lion.

I saw a woman in the park the other day walking with the aid of a helper who was so bent over from some sort of spinal disease that I couldn't see her face at all. I myself am not looking in the mirror much anymore, but that's because I bear a strong resemblance to Cary Grant and don't want to spoil it for me. There's Tom Brady, there's Gisele Bundchen and then there's almost everybody else.

thanks for an enlightening piece. I like to read about all kinds of people with all kinds of backgrounds and challenges. if we all look at each other as real, as human, as fragile, perhaps we can start to treat one another as we would like to be treated in similar circumstances. we all have challenges and struggles that deserve to recognized, so thank you for publishing yours.

"Nobody told me happiness was an inside job."
----
How brave, and how true.

I'm curious about why the editorial team chose not to publish her picture. Isn't that the whole point of her article?

'Nobody told me happiness was an inside job.' This could be the most important and accurate sentence in the Times this week. Thank you!

A few thoughts...

Like many other commenters I Googled your picture and I have to say you have a smile that can light up a room. That makes you more attractive than a stereotypical "beautiful" person who is a sourpuss any day. What makes a person beautiful or ugly is not just what they look like, it's what they act like and their attitude toward the world, too.

Aside from that, your essay made me think of the movie "Deadpool" (in which a military commando becomes a superhero due to a serum that "mutates" him, giving him superpowers but also disfiguring him at the same time). If you haven't seen it, I would say he looks like he was burned over his entire body, and plastic surgery isn't an option because his super healing powers would just restore his new appearance. He is very afraid his girlfriend will reject him when she sees what he now looks like, and she is indeed shocked, but while acknowledging the change she decides she can accept it and she still loves him. I am encouraged by "Deadpool" as well as several roles Peter Dinklage has played (most recently in the Adam Sandler comedy "Pixels") where his dwarfism is not only not a central part of the role, it's not even mentioned -- they could have cast any actor in the role. They chose to cast him, and his dwarfism takes a back seat to his acting skills (and sexy voice!). Seeing Melissa McCarthy cast in lead roles is encouraging too. Maybe, little by little, Hollywood will come around.

Where is the picture of the author? It is sorely absent. Better yet, a hundred pictures of individuals with craniofacial deformities. She makes a point of writing that her features are unknown to the public as - unlike Down Syndrome (finally) actors with her diagnosis don't get hired and put on TV. Please don't leave her countenance out of her own essay. Where is the picture - or a video? PLEASE

Saddened from your story and sadder still, not surprised by your treatment by others. And sad also but true that it is a disability. We as society do not work hard to understand our nature and negative tendencies and even the ones we do have good awareness of we instead indulge or exploit which is aggravating to the maladaptive tendencies. Do we want men to choose mates based 99% on appearance? Do appearances correlate well with compassion, intelligence, or other qualities we may value? Yet our media that is proven to shape our views not only does not have 'disfigured' people present, its hard to find women over the age of 35, harder yet one that is of average weight. And when such briefly flicker they are not heroic or associated with fun, made interesting or desireable company. Sure media may just be to 'entertain or sell' yet since its has so much influence, improving such may help the cause. This and of course more education in human nature and especially where we need work in elementary and higher grades..
--w

I love your line, "Nobody told me happiness was an inside job."

I cannot easily relate to your beautiful struggle. But I see my own struggle for happiness just a little more clearly for what you wrote. Thanks for that.

I, too, Googled this writer. She meets more of the criteria for conventional feminine beauty than I do, and I do not have ADA-defined facial disfigurement. She has, full lips, clear skin, straight teeth, large eyes, straight and not overly large nose.

I cannot speak to what she has lived with or through, nor do I claim that my less-than-beautiful face created the hardships for me that her disfigurement has for her. But some of us are just ugly, and we can't explain it by noting that we have disability. And what about women who are so conventionally beautiful that few people even see beyond their beauty to who they really are? ?Does the condition of extreme beauty also at times act as an impediment to a normal life, despite the obvious and significant advantages it offers?

I very much love this theme and the essays, but I always dread the comments.
Especially when advice is given! Also sympathy. That's really annoying. A quad friend wheeling about the neighborhood (Santa Barbara, a most excellent disabled community) would sigh when patted on the head by passerbys, and/or prayed for, as in "bless you little lady."

As one now in a wheelchair, I find responses are sometimes hilarious sometimes humiliating; the challenge is to respond graciously.

"I believe the intensity of the term 'disfigurement' allows individuals to become more aware of their own prejudice and more mindful of how they treat others."

You have certainly given me something to think about. I truly thank you for that.

You are so beautiful! There are so many people who don't have what society would consider to be "beautiful, symmetrical faces" yet they are still gorgeous. I'm not sure why our world thinks that you have to be symmetrically pleasing to be considered beautiful. My god your lips are nose are so cute and pretty! You're gorgeous and I hope you always remember that girl!

Ms. Henley, you have written a beautiful, intelligent and eye-opening article. I am very grateful to have read it and to have learned a great deal. I, too, googled you and also see a lovely woman. Thank you for sharing your life with us. You have given me much to think about.

I agree completely that more people with quirky looks should appear on TV and in the movies, because that's the way real people are. Actors like Tilda Swinton, Peter Dinklage, the late Marty Feldman, and many, many others became great successes because of their talent, but their memorable faces also played a part. I think Hollywood has noticed, and we will see fewer marches of perfect physical clones in the future.

I'm sorry you've experienced this. I was lecturing today on microaggressions and the pain of invisibility for a Cultural Psychology class and am going to include this in their reading. And I am sitting in an emergency room right now with my son, who just had an IV to bring down his constant high pain. I too understand that searching searching searching to find others who have had the same experience as you have. His illness is invisible. No one stares - a blessing. But no one understands except other kids like him and other moms whose kids are also suffering.

Thank you for writing this.

Unfortunately many people in this world are rude and crude. I hope a person with similar concerns can get the most updated cosmetic surgery to make them feel better about themselves if this is such a challenge for any individual. In the meantime, I would enjoy my life and not care what other people think or say.

This is heart cry for a world In which people are valued in deep and authentic ways. Our visual age places the value of many on their appearance alone. Social media is turning too many into attention hungry image makers. You exist as a rebuke to this shallow age and by your writing reveal intelligence, wisdom and authenticity.
I would love a world in which you could feel included not because people are used to seeing disfigurements in media, but because people are valued for the integrity of the character and not the colour of their skin (or any other physical feature) to borrow a famous but as of yet unfulfilled prophesy. Live to realize that world.

Ariel,

Thank you so much for writing this. You and your sister are brave and beautiful. I believe your goal to get people on television with Crouzon's and other facial differences is so important. I hope producers will read your piece and take your advice.

I must admit, I googled you after reading this article, out of curiosity. I don't know what I was expected to see, but when I saw your face, I was shocked. I was shocked because you look so cute! Seriously. I was preparing for something on the order of the people who need facial transplants after a fire or accident... Yes, you look different, but I could not honestly call you ugly. I urge everybody reading this article to look you up in google images and see your real face, instead of writing niceties out of obligation while imagining a monster they want to feel gracious towards. You are cute. I know there are plenty of disfigurements out there that we really need to try hard not to stare at, and they all need respect and equal treatment, but... To read that you of all people have received harsh treatment, after I saw your face, is even more disturbing to me, hence why the importance of seeing your face. You should've posted a photo with the article, instead of the art piece - it's publicly accessible in google so might as well show it here! It would drive the point farther - if people are capable of so much discrimination towards somebody so mildly different and otherwise cute and pretty looking, then imagine what people with more severe degrees of disfigurement must be facing daily. Seeing your face highlights society's faults so much more than words alone can.

Well written and true. Differently figured faces and bodies were much more common in the past. I would expect they were more accepted too. Modern medicine has skewed the spectrum of human appearance and altered what we consider 'normal'. We should all grow up and accept the differences in ourselves and others as part of our shared humanity. Bullies are the true 'ugly' ones.

Don't look away! Look in this person's eyes and hear her voice.

thanks so much for your beautiful and painful story. we have so far to go as humans in our compassion and acceptance.

Yes, to all of this. Keep working for it, you will see results, you will change the status quo, and you will help many others beyond yourself.

I believe you are incorrect. Watch the reality series "Last Alaskans". There are three sisters that have the same thing. It is one of the better reality series, too.

I agree wholeheartedly that our society (and probably all societies, since facial recognition is hardwired into infants) needs to do everything that it can to ensure that those whose faces, whether as a result of injury or birth, have elements or proportions that fall outside of the standards that our brains are wired to accept as "normal," are accorded the full dignity and respect that all people deserve, but would it have been so hard for the Times to include a photo of the author, instead of a generic abstract sketch, so that readers can have the slightest clue as to what she's talking about?

I love this account. I am deeply touched and brimming with tears. They are tears of sympathy and of regret, regret for my prejudice. I liked to think I did not have any, but Ariel exposed me. I very strongly believe that identity is created by illusion and deserves to be rejected in favor of recognition of humanity, universal values rather than the ones which are ascribed by those in power who would divide us. Beauty is a hard wired biological trait that can be manipulated and just as we can recognize the delusional aspect of identity, we can ask ourselves to love all the forms, but more importantly to acknowledge that while form is phenomena, it is not substance.

You are already contributing more to society than many of the 'beautiful people' will in their entire lifetimes.

Thank you for this essay, Ms. Henley.
The rigid standards for "good looks" and beauty in our culture are very oppressive. Mainstream t.v. is so crowded with plasticized faces that often I have no stomach to watch it. The dominant standard of beauty is fake and uninteresting, The real beauty of humans is in their personalities, in their acts, in their creativity and dedication to meaningful things. I hope that your campaign for recognition succeeds, and I hope that your happiness thrives.

You are a brave woman. Your strength and determination are inspirational. Thanks for sharing what cannot be an easy story to tell.

My parents taught us not to stare, but the truth is sometimes that initial look can cause a slight flinch, but I always try to catch the person's eye and smile at them. I'll work harder on my poker face and keep smiling. Thank you.

The facial slur remains as a heartbreaking moment.

"How can individuals with disfigurements and physical differences be expected to accept ourselves and love our differences, when we aren’t even worthy of mainstream inclusion?"

Why, on earth, should you "love" your "difference?" Your draw in the genetic lottery has caused you immense mental anguish and physical pain. Accept that fact and then move past it.

Focus your energy on creating a satisfying and rewarding personal life. Cultivate a hobby, and develop an expertise in it. You will soon attract a small core of friends who share that hobby and are eager to learn from you.

The sewing author, entrepreneur and public TV host, Nancy Zieman, has had a noticeable facial deformity, Bell's Palsy, since infancy, but that hasn't stopped her from having a rich and interesting life. You can have one, too, and you don't need to remake society to do it.

https://www.amazon.com/Seams-Unlikely-Inspiring-Story-Zieman/dp/09884789...

I very much appreciate this article. It has widened my horizons and reminded me of the depth of human reality that lies behind every face, beautiful or not.