split screen of woman on the left with makeup and on the right without

When I Auditioned for 'America's Next Top Model'

1k
1k
12

When Nyle DiMarco was named “America’s Next Top Model” in the show’s season finale in December, he was the first deaf contestant to win a $100,000 contract. While the hit show was scheduled for cancellation, this particular win ignited a national response and reaction to his success, and now the show will continue. There is no mistaking the fact that the fashion industry tends to disregard diversity. 

As I watched DiMarco’s recent victory, I remembered back to 2009, as I stood with a group of other women getting ready to audition for ANTM. My friends couldn’t believe I went through with it considering I was born with Treacher Collins syndrome, a craniofacial disorder. Many of us born with Treacher Collins look at our faces and see a puzzle full of pieces that will never fit. We see a disaster. We see a miserable childhood full of bullying and a life of insecurity and anger. We’re tormented at school, ignored by the opposite sex and we usually resort to various facial surgeries to repair what doesn’t work (such as physical appearance, hearing and speech) and to make ourselves look more like the people we want to fit in with. When I auditioned for that show, I had already been through more than 10 cosmetic surgeries, and my friends told me I was pretty. But was I pretty by the standards of “normal?” As I approached that large auditorium in Los Angeles, wearing four-inch heels and a black cocktail dress, I signed in and joined the other women. 

split screen of Cynthia Murphy, on the left with makeup and on the right without

I tried making small talk, but nobody looked at nor spoke to me. Some snickered. I felt alone and stupid for being there, but I was determined to go through with the process. Finally, my group was called. We all stood against the wall, and judges walked up to us and took notes as we turned from side to side. Finally, they called the numbers of the ones who would go onto the next stage. My number wasn’t one of them. Although I lied to others about how far I made it in the process, I couldn’t lie to myself. 

Now, as I watched a deaf male win, I realized he was picked, not by judges, but by the power of the people through social media, similar to the way the winners of “American Idol” are selected. I take this as positive for those of us who don’t fit the stereotype of attractive. When the people vote for what is beautiful, perhaps they will see something that fashion-industry professional judges miss. 

Society today is seeking inspiration as a result of difference, and even though many of us are different, that doesn’t make us incapable of pursuing the same career goals as anyone else. There is a desire and need for diversity and more inclusive beauty standards in the fashion industry. If the definition of an authentic role model stems from all-inclusiveness, then why isn’t the industry setting an example to be all-inclusive? Why would I subscribe to a magazine full of models who are deemed the true definition of beauty, when I can never aspire to be in in that category? 

We live in a world of difference, a world that so far, has not often been represented in the modeling and entertainment industries. This prejudice carries over to the professional world, where people with facial disorders want to be accepted and looked at based on our own merits. 

Although I dropped out of high school, I was fortunate enough to work for one of the largest law firms in the state. The first attorney I worked for encouraged me to return to school, and I earned my associate’s and then my bachelor’s degree and graduated with honors. I have nearly completed my master’s and am studying for the Law School Admissions Test (LSAT). For the past nine years, I have been married to a good man who sees and loves the real me. 

No, I won’t be auditioning for ANTM soon, but I hope that someone — many someones— with craniofacial disorders will be. I hope the perception of beauty transcends the limitations of the past and becomes more inclusive. I remember how the other contestants derided DiMarco because of his deafness, because he lived in a world of silence and was different, because, as they said, he would never fit into the high-stakes world he so aspired to join. With tears in my eyes, I heard his name called and watched his face light up in disbelief and overwhelming happiness when the American Sign Language interpreter translated the announcement of his win. 

What is beauty? Here’s what I think. I think the perception of beauty changes. It always has, and it always will. Beauty is not only what is on the outside; it’s the inside that radiates on that outside. It’s a lot of people who never before had a chance. It is all of us who keep saying, “Here we are. Look at us.” 

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

1k
1k
12
JOIN THE CONVERSATION

RELATED VIDEOS

A Letter to My Son Before His 11th Surgery

1k
1k
4

My son was born Treacher Collins syndrome, a genetic craniofacial syndrome he got from his birth mom. Yes, he is adopted; both of my kids are. He was born with no palate in his mouth, no ear canals, profound hearing loss and a complicated airway. We took custody of him eight days after he was born. His first major surgery was his trach at 3 weeks old, and it was then I started telling him that I wished I was a fairy Godmother and could pull my magic wand out of thin air to make everything OK, but I couldn’t find it.

He’s about to have his 11th surgery/procedure at almost 2 and a half years old, and we don’t know what it’s going to be for until the ear, nose and throat specialist (ENT) gets in there. It could be routine; it could be a few nights in the hospital. But the only minor surgery is the one you or your child isn’t having. So in response to that, here is a letter I wrote to my son:

Dearest Son,

I have looked everywhere and I cannot find my magic wand. I’m pretty sure I lost it on the car trip down to Florida to pick up your sister. So I had to leave a message for the surgery scheduler because I missed her call this morning and am waiting for her to call me back. She’s the one who came in last time and gave you a hug because she’d never met you but has scheduled everything we’ve had to send you back for in the last year.

I just want you to know that every procedure, every surgery, everything you’ve ever had to have done that has caused you pain and grief — even though it’s done for your own good, to save your life sometimes — breaks my heart and your daddy’s heart. I just show it more on the outside sometimes than he does.

Yesterday when the ENT came in and put his scope on, and you started signing “All done” and “Ready to go,” and the silent tears started coming because you realized we weren’t leaving — that I was not only going stay but hold you down — it was all I could do not to pick you up and run out the door with you and your sister. That’s why I was crying while I held you down. We have to do this. We do what we do for you because we have to. Trust me, it’s not because we want to.

And it’s not because we don’t love you the way you are. We do. We’ve loved you every way you’ve been. But if we said no to all the surgeries, you wouldn’t be where you are right now. Sitting, watching “Bubble Guppies” and eating crackers and yogurt. You wouldn’t be with us. You wouldn’t be lighting up the world around you with the joy and the happiness you bring to everyone. You wouldn’t be the little brother to your sister, and we would all miss you.

I don’t ever want you to think you have to change what you look like and who you are for anyone but yourself and the betterment of your health. Because we love you the way you are. We love that you talk with your hands, and we love that you swing your arms when you walk because it helps you keep your balance better. We love every bit of you.

Love,
Mommy

1k
1k
4
TOPICS
JOIN THE CONVERSATION

Family of Girl With Rare Disorder Adopts Her a Sister With the Same Condition

1k
1k
3

Thom and Tami Wetmore, from Tyler, Texas, credit their daughter Juliana with opening their hearts to their other children who they’ve adopted from all over the world.

Juliana, 12, was born with a severe case of Treacher Collins syndromeshe is deaf and missing 40 percent of the bones in her face, according to USA Today. She has already endured 45 surgeries on her face.

 

Because of Juliana, the Wetmore family decided to adopt a little girl, who also has Treacher-Collins, from an orphanage in the Ukraine. When they met Danica and took her home with them, they were the only people to have ever expressed interest in the 6-year-old girl. It is likely that had they not adopted her, she would have eventually been turned out of the orphanage to live on the streets.

Screen Shot 2015-07-29 at 9.09.21 AM

Now, Danica and Juliana are sisters living with the same condition and their family keeps growing — the Wetmores also adopted three siblings who were in need of a home.

It’s just amazing how your daughter that you look at as just a normal, everyday child that looks a little bit different has changed so many lives,” Thom Wetmore told USA Today. “Because you realize it’s OK to be who you are.”

Get more on the story of the Wetmore family in the video below:

h/t Reddit Uplifting New

1k
1k
3
JOIN THE CONVERSATION

Child With Rare Facial Condition Gets Special Visit From His Hero

8k
8k
10

When being different is hard, knowing there is someone else out there like you can give you strength.

Jono Lancaster, 30, of West Yorkshire, England, was born with a genetic facial condition called Treacher Collins syndrome. The syndrome is believed to be caused by a change in a gene that affects facial development, according to the National Craniofacial Association. The condition is often characterized by face abnormalities including the underdevelopment or absence of cheekbones and a slanting lower jaw.

Just 36 hours after he was born, Lancaster’s biological parents made an adoption plan for him, BBC reported. In his youth, he underwent years of struggling to accept his appearance and coping with bullying, but he’s since become a part-time model and learned to love himself. Now, he wants to help others to do the same.

What really frustrates me and upsets me is when a child in a supermarket stares [at me] and his or her mother tells them off,” Lancaster told the BBC. “I wish they could come and talk to me so that I could tell them about it, so that it seems more normal.”

Recently, Lancaster went on a three-week tour of Australia where he visited schools and educated the public about his rare disorder, the Advertiser, an Australian news outlet, reported.

On November 17, he made a special stop on his tour — he visited the Walton family in Adelaide, Australia. Zackary Walton, 2, also has Treacher Collins syndrome, and Lancaster is his hero.

“Today and over the next couple of days I get to hang out with this little dude and his amazing family in beautiful Adelaide,” Lancaster posted on Facebook.

Sarah Walton, Zackary’s mother, contacted Lancaster on Facebook and told him how her son looks up to him. They arranged for the two to meet.

I would have loved to have met somebody like myself when I was younger,” Lancaster told The Advertiser. “Somebody who had got a job, got a partner and said to me ‘these are the things you can do, you can achieve.’”

“He is a celebrity to us — he’s a huge inspiration,” Sarah Walton told The Advertiser.

h/t Aplus.com

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

8k
8k
10
TOPICS
JOIN THE CONVERSATION

A Letter to My Little Sister With Asperger Syndrome

512
512
2

image2 (3)

Dear Michaela,

It’s hard to believe the picture I used with this letter was taken 16 years ago. It’s even harder to believe how much my love for you has grown and developed in those years.

For most of our younger years, I didn’t like you. I didn’t understand why you needed more attention than me or why you would get angry and scream or throw things. Our mom tried to explain these things to me, and I remember her getting me books about Asperger syndrome. But it wasn’t until I was around 12 that I learned what a gift you were to me.

You were 9, and we lived in our great grandmother’s house with Mom. Life was great at home, but both of us hated school. We were both ridiculed and picked on. You were called a “retard” a lot, and I remember when you told me that, I wanted to bash a few people’s faces in. That year, I was hospitalized to get treatment for self-harm. One day, you came to visit me, and you told me you wanted me back home and you missed me. I fought to get better, and left three days later.

I haven’t attempted self-harm since.

In 2009, when I was 14, and you were 11, we moved to Massachusetts with our mom and our soon-to-be stepdad. You started to blossom. Throughout your elementary school years, you didn’t mention friends, but here, you constantly had friends over and talked about them a lot. In my high school, we had a program to mentor the students in the school.

I got in because I wrote my essay about you.

You went into high school my senior year, and though I was hoping you would attend the same high school as me (for selfish reasons, I just wanted to protect you), you found an agricultural school in the area. You applied, you interviewed, and you got in.

Since you began attending this school, I’ve seen a complete change in you. You’re happier, and you always have something you learned in school to share with me. You joined the Future Farmers of America, and you’re dedicated to it — you were even elected as an officer this year.

I look back on the dark time in my life, and I realize you were my beacon of light. I followed you, and I got out. I’m glad I didn’t end my life.

You inspire me in so many ways. It’s still strange to remember that you never liked hugs or even to shake hands, but you hug relatives and shake hands with strangers now. You hug me when I’m sad, and that’s the greatest gift of all.

You are the greatest gift of all.

Thank you, for being my little sister, and for helping me see the light when I couldn’t find it on my own,

Your Big Sister

If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

512
512
2
JOIN THE CONVERSATION

To the Therapist Who Threw My Son a Birthday Party

392
392
3

There are so many people who’ve come into our lives along our journey through autism — doctors, teachers, therapists and support staff — each person touching our lives in a different way, adding to our experience, guiding us, adjusting our learning curve and offering support. It would be hard to name all these wonderful people. But I attempted to make a list. And as I was adding name after name, I noticed one person’s name appeared multiple times. I suppose it was because as my mind rolled through our journey her name kept reappearing.I felt compelled to share her with you.

It’s taken me a long time to write this, to digest the emotions, to find the words. Having children is a blessing — a challenging, life changing blessing. Having my son, Liam, has been the most intense, amazing journey I’ve ever been on, and trust me, I’ve been on some awesome trips. He’s inspired me in ways I didn’t know another human being could. Like every other parent, the love I have for my son is my driving force. And, like most parents who seek out professionals to help their children, I look for providers who are as passionate and dedicated to their work and clients as I am to my son. We have been blessed with some amazing support along the way.

Last year, I was in a battle for services for my son. He needed a specific kind of therapy, and his school district would not cover the expense. Our private insurance denied coverage. It seemed like there were road blocks and barriers at every turn. The fight for services, coupled with daily life, took a huge mental and emotional toll on me. It’s difficult to know your child needs something and not be able to provide it. It was a dark time, and I wasn’t always sure how things would turn out. I kept pushing. That’s not a pat on my back. I kept pushing because one person continued to make it possible — my son’s board certified behavior analyst and owner of his therapy center. 

Even now, I’m not sure she realizes the impact she’s had on my son, my family and on me. I’m not sure I’ll be able to fit it all in one entry. Her passion and abilities as a therapist gave Liam a skill set he didn’t have before. For the first time ever, he was happy to go to school, happy to engage and we saw a decrease in behaviors which had limited him for so long. As a mom, it’s hard to see your child struggle in almost every aspect of life. The flip of that is it’s so much sweeter and life-changing when you see the same child cross hurdles and accomplish things he’d struggled with for so long. It wouldn’t have happened without Alicia. I’m sure of it. I will forever be thankful.

She wasn’t just his therapist. She owned the clinic. Liam needed a placement I couldn’t afford. I was determined to do it, but I didn’t know how. She worked with us, crunching numbers, finding ways to fund his program. There were days I thought, “He’s not going to be able to keep going. We owe too much. She’s a small business. She can’t afford to let us owe this amount of money.” (At one point, thousands — we owed thousands.) I worried about it constantly. There were many sleepless nights and days of fog worrying about paying his therapy bills. I waited for the phone call to tell me he was going to half a day — the call that would end his services. It was a call that never came. She allowed me to pay as much as I could as often as I could, and his services weren’t interrupted. I will be forever thankful. 

unnamed (38)
Me and Liam

As if teaching Liam and allowing me a more than generous payment plan weren’t enough, last winter, she read a blog I’d written about a failed birthday party. As many of us know, birthday parties for our kids can be a challenge. She offered to help me give Liam a birthday party. I won’t ever forget that. I was pushing a grocery cart, talking to her on the phone, when she said, “I want to help you give Liam a birthday party.” I cried. This person, a therapist who I’d known for such a short time, offered to help me give my boy a birthday party. It was priceless. I’ve yet to write about it, but fully intend too. I’ll save the details. Just know, a group of parents and kids were surrounded by support, the staff from the party location, behavioral therapist, and had a wonderful time — all because of her willingness to help. Another reason to be forever thankful…

When I was looking for a house, she gave me leads. When I was looking for a job, she helped me find one. I could talk all day about what this woman has done for my family and for me. But, for now, I’ll just say thank you, Alicia. 

Thank you for being a smiling face, a warm heart, strength and forgiveness. Thank you for the impact you’ve had on my son, on my family, on me. You have been an inspiration to me on so many occasions. Honestly, I’m not sure thank you is enough, that it captures what I want to say or has enough impact. You will always have my gratitude, a place in my heart, and be a memorable part of our autism journey. Thank you for all you have done and continue to do. 

X,

Bec and Liam

To all of you, during this season of thanks, I hope you have people in your life who have impacted you the way Alicia has impacted us. To the providers, teachers, therapists, doctors and everyone else supporting families — thank you. I hope you know what your dedication and commitment means to the families you work with. Many times, you’re what helps us get through a tough day, and we will be forever thankful.

For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

392
392
3
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.