That Moment Social Media Sets You Free
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That Moment Social Media Sets You Free


– My family has always been
told we’re so beautiful, and I always felt like for
me, it was from the neck up. So I was born a happy, normal baby. My mom would describe me as perfect, but about two weeks after I was born, she noticed that my hands
were different sizes, and they found out that I was
born with a rare bone disease called Ollier’s and Maffucci’s syndrome. I can remember playing in
the snow during winter, and my aunt said something
like, “Oh with that snowsuit on, “Ash looks normal.” And I remember one time when
I was getting my jeans hemmed, the tailor, he was at the
bottom working on my pant leg, and he was like, “So what happened?” And the only answer I can really offer is I was born this way, and I can remember him shaking his head, and he’s like, “That’s too bad “because you have such a pretty face.” So in 2005, that’s when
social media entered my life. I started getting all
this attention from guys who were like, “Come to
this party,” or whatever, and it wasn’t something that
I was used to, and I noticed that when certain pictures
of mine were cropped, you couldn’t tell that
I had a bone disease. I was normal. I was Ashley in a snowsuit. I was Ashley with the pretty face. There is this sense of fear because I felt like if
people knew the real me or saw all of me, they
wouldn’t be interested, which sometimes was true. Someone would tag me in photos, and I would have this panic attack. Text my friend, “Please take
it down, please take it down.” Then about a year ago at three a.m., I am scrolling through Facebook, and I come across this
group for my bone disease. It kinda blew my mind because I have never met
someone with my disease. There is only 200 documented
cases in the world, and I’m just looking at this like, “Wow, there is people out there
who are like me that exist.” And then I see this mom
who posted these pictures of her daughter who’s six or
seven, and she’s beautiful, and I’m looking at the
photo, and then I see it. I see that her hand looks
exactly like my hand, the hand with bony tumors,
the misshapen fingers, and it’s the hand that I hate. And I just sat there in my apartment, and I just started crying because I imagine this little girl looking at my social media-cropped Ashley being like, “She doesn’t know. “She’s not like me. “She’s normal.” But I wanted her to
know that I am like you, I’m exactly like you, and
I know what it’s like. It’s ironic because your social media, this thing that I was so
terrified to be judged on, now it’s the bridge for this
sense of hope and inclusion. It was that moment that I
decided that I needed to stop trying to hide myself, and I’ll be honest, it’s a struggle today. It still is. But I think about this
little girl at six or seven, or I think about myself at six or seven, and what it would have been like to have someone as a role
model to say, “I’m here. “I’m living this life. “I’m happy. “I’m thriving. “You’ll get through it.” So that’s kind of what I’m doing. This is me being vulnerable with the hope that it will help someone else be brave.

100 Comments

  • Suzume Kato

    that feeling when someone is a billion times more attractive than you and they make a video about how they are self conscious of their appearance

  • Yumna Nezar

    you are the most beautiful person i have ever seen inside out! And you are a great role model, and the fact of you telling your story and being strong really made many people stronger. i showed my cousin who is a similar case like yours your video, and then she looked at me at the end and said that she is happy because she was born this way, because it made her stronger. Thankyou for putting up your story out there, it is really helpful and inspirational.

  • Newman Susan Elizabeth

    You have beautiful, strong, sculpted Michelle-Obama-esque arms! I would never notice anything different about you…except that you are unusually articulate and exceptionally big-hearted. We all have things we don't like about ourselves. I had a bike accident that badly separated my collarbone. It sticks way up. At first I was very self conconscious about it. If people noticed, they would stare or grimace. Then one day I was walking on the beach and saw pelicans flying overhead.They have "bumps" in their wings  – just like my shoulder. So now I have decided that I am simply built like a pelican. I applaud you for standing up and sharing your differences. Your goodness, kindess and generosity is what is truly sets you apart.

  • Cynthia Volkmann

    She's absolutely beautiful! Interesting as we see our personal defects looming largely before us but others don't notice it as much. And sad that if they do, they feel that they must comment. Sigh.

  • josinta waang

    Ashley.. You are just beautiful inside out. Your feature may not be perfect, but your peesonality cover it all up.. I'm truly inspired by your courage.. Thank you for being you.

  • Antonio Aakeel

    Courageous, Brave, Inspiring.
    I can't believe to understand what this woman has felt her whole life, but being vocal and vulnerable like this is incredibly touching to witness. Thankyou.

  • Tom Handsome

    Compared to other people with her condition she looks fairly conventional. While it must stop her from doing things and pose challenges , she looks oksy

  • King B

    Shes too cute to let her hands bother her, judging by the video her personalities pretty good too so theirs plenty of guys that would not only date her but love her.

  • ronel

    She's one of the most beautiful woman I've ever seen. And not like "..for a person with a condition". No .. like for real. Different doesn't mean "not beautiful". In her case it actually means the opposite to me. She's just one of those few people you can't take your eyes off, such a unique beauty. And her personality makes it even better. I wish you a wonderful inspiring life dear Ashley!

  • mythirdchannel

    what a touching video 🙂 I salute your bravery and you're amazing for telling your story and putting yourself out there

  • Daniel Scott

    Very well stated young lady. I too struggled with having a deformed left leg since birth. Your not different or ugly! Your beauty surrounds you in so many ways. Live life to it's fullest!

  • Emilia Pawlikowska

    You are beautiful, flaws and all. None of us are in perfect bodies, and we are never satisfied with ourselves. It's very hard to make peace with yourself but it's a working progress…for you, for me and so many others around you. I think there's so much worry among young girls where they feel like they have to be this perfect thing – and they don't. Perfect people don't exist. Sometimes people need to be told it. We don't love the people we love because they are perfect. We love them because they are.

  • Toshiba22 Mendoza

    You are blessed to have an alluring face like yours. But let's be frank ,you having the most beautiful face on social media i must say , helped you to have guts to finally free you , and you know that ,but…what if not? There are hundreds that are like you,but thousands that are not.

  • Debbie Lester

    What a brave, strong, and yes beautiful woman! Though your face IS beautiful, I think your spirit and soul are so much more beautiful. We ALL have parts of ourselves that we are insecure about! Wouldn't it be wonderful if everyone valued who we were over what our bodies look like? Thank you for sharing.

  • eva parke

    I actually think your body is great and I’m so sorry life caused you to not feel that way for so long, but you go for taking back that power and embracing yourself!! ❤️ inspirational sis (:

  • L Drake

    I freaking love this. Ashley, I love your brave heart that's on display here. In fact, it's so big and so brave I couldn't see anything else when you took off your jacket. Thank you so much for standing up, not just for those of us with outer flaws, but for every single one of us… because we all struggle with hiding our struggles and our imperfections from the world, and putting on that plastic mask every day to protect us from others' judgments. I'm learning to take my mask off, but like you said, it's hard to do. Thanks so much for helping me get that much closer to being authentic. To being me.

  • Amira Akmal

    You brought me tears….. Your courage, compassion and honesty is just remarkable… Thank you for sharing your story… I honestly can relate to it… And I wish I was that brave… Thank you again

  • Utshab Karmakar

    Your personality is yr biggest crown which you have acchived in yr life…..
    People like you are the real examples for why this beautiful world should be loved on…
    U r a role model for many …

  • Cal Marsh

    I was crying from the moment you started talking about your memories in the snow. You are beautiful, you are strong and your courage is brighter than a thousand suns. From someone who is dreaming of running but is still scared to fall down, thank you. <3

  • AZBrant56

    What a shot of ‘Will’ came out of Ashley in that last moment, asking us to take it and be brave and believe in ourselves. I could feel it reach the young girl she spoke of. Thank you, Ashley

  • SwanCrunch

    uhm, and what is the big deal? maybe it's lighting and camera setup, but i'm just getting like a slightly midget-esque kinda vibe.
    pfft, so much drama and anticipation and no ugly duckling beneath the neck. #wouldsmash

  • Landon Y

    How about that moment where Social Media makes you feel like a prisoner? Where you post your opinion online, and society tears you down limb from proverbial limb. Where social media is the jury and the judge. Where social media turned bullying into an epidemic with rampant suicides because you can't escape with the internet remembering everything.

    Yes, social media has a lot of positives. I myself have severe social and generalized anxiety that leaves me unable to leave my house the majority of the time. But social media has also created new problems and sometimes I wish it didn't exist at all.

  • Punk Rock

    I don't see anything wrong with her , she's stunning inside and out and people wish they were as beautiful and as sweet as her

  • Born Bred 113% Hollywood Local

    I don't get it what is wrong with her? Her hand just looks a bit small but I wouldn't have noticed I only did because she mentioned it but I don't see whatever it is she's talking about I mean size isn't a big deal some people have their entire face burned from fires and worse. She is really pretty and I love her hair people buy wigs for hair like that. What people need to know it can get worse whatever it is we are bitching about especially looks because guess what? When you're really old which we all will be it won't matter because it's gone whatever we had all we have to offer after that is our true inner person and when you live for vanity and appearance then you better prepare for the fact that you'll be very lonely and disappointed when you find yourself alone and you realize plastic surgery can no longer help next thing you know (because time flies)you'll find yourself lonely reminiscing about what was causing you distress and depression. Instead of being surrounded by friends and family who love you because of how you lived your life and made people feel loved not just loving yourself no matter how we look at one time in our lives their will always be someone trying to bring you down looks don't matter people should make themselves happy and love themselves because you should never depend on someone for happiness only can make you happy and you can't love anyone till you love you!

  • Ivana Jordan

    The first thing I thought is that she was very fit and wanted to know her workout routine. She’s a beautiful person❤️

  • Stella’s Daebak

    You are so beautiful. Your eyes and how you chose to help people by showing your weakness. When u took that Jacket off really all I can say is that you are so beautiful Ashley. Thank you for being an inspiration!

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