Follow:
My Life

Perhaps the world has poor taste

When I was a little girl, I had very little idea that I was different. The most I knew was that many grown-ups paid a lot of attention to me. I was special, and people were interested in me. Well, why wouldn’t they be? I’m awesome. I was oblivious to the fact that I was what people call “disabled” and I was unbeknownst to the many challenges that I would face later on in life because of that and because of what I looked like.

In many ways, I had a truly magical childhood and for that I am so grateful.

But sure enough, I got older. I was exposed to school life and the rest of the world. I soon learned what was apparently “wrong” with me. I learnt that I didn’t look or sound like the other kids. As I grew up, I started to receive a new message about what I was. Bullying, the media, and a universal world view about what was considered beautiful would resolve me to believe one idea;

I am ugly.

Many people who experience a facial difference or speech impairment will know exactly how this feels. I’m sure people without a disability will know what it feels like too. But I just want to focus on facial differences for now because I feel like there is a huge difference and difficulty with how it feels to have a facial difference that most people do not understand.

Personally, I’ve always had a healthy self-esteem to begin with. Like I said, when I was little, all the attention that I got (that I was aware of) was positive. I grew up in an environment of a very loving family and most of the people I surround myself with intentionally are good people who love me and see me for the real person that I am.

I know how to take a compliment when its genuine. I love getting dressed up wherever I’m going because that’s what makes me feel confident. I am by no means a recluse who wants to hide away her looks. I’m a social butterfly and actually don’t mind being the centre of attention mostly.

But there will always be my biggest physical insecurity – my face.

I hate that my eyes droop down half way (despite my eyes having a lovely colour and eyelashes that many girls pay to have. – Oh yes, I’m aware). I hate that my mouth doesn’t fully close (despite having big lips that look fabulous in bright red lipstick and again girls pay to have. – You don’t need to tell me again). I hate that I can’t control the over-production of saliva, so sometimes I do drool. I hate that when I talk my speech is not always clear. People have to ask me to repeat myself several hundred times or they hear me incorrectly or EVEN WORSE, they just nod and smile, pretending to listen when really, they can’t understand me at all. I hate that people think I don’t notice, because I do! Every damn time! I hate it!

Children in shops will point, stare, laugh or cry at the sight of me. You have no idea how humiliating it feels watching a little girl hide behind her mother in fear of me. In primary school I was called ugly and kids looked visibly disgusted to even go near me. In high school, a boy who hung out in the group of kids I was friends with once told me that no guy would ever date someone as ugly as me. I never even told my parents about that one and at the time I pretended that I didn’t care – that guy was a dick anyway. But the fact that I still remember that clearly will tell you that in fact it still hurts and has a very lasting impact.

In high school I sometimes refrained from putting my hand up in class because I was afraid that nobody, including the teacher, would understand what I was saying and that I would hold up the class as the teacher asks me to repeat myself over and over. I often want to say hello to people who smile at me or start a conversation with a new group of people at events or parties, but I’m afraid of what I will sound like. So many people, young and old, have assumed that I was retarded because of how I looked and sounded. I was once on a bus on the way to school and watched as an elderly woman leaned over to her friend and pointed at me and then to her head as if to say; “she’s retarded”. I wanted to speak up for myself and let her know I was every bit aware as the next person, but the humiliation is silencing.

I have so many more similar stories.

So, you see, living with a facial difference is heartbreaking. Those who do know me, know that I’m an intelligent, upbeat and social young woman. When I’m comfortable with people, I can talk paint off a wall. But I am no longer unaware of how others tend to perceive me.

I often say, and truly believe, that if there is one thing I could change, it would be my face. Not even that much, just my mouth. If I knew that I could kiss the people I loved, smile for the world to see and speak as well as be understood, I would be completely satisfied. Not being able to walk is NOTHING compared to not being able to talk properly.

Speech, smiling and kissing are all such natural parts of our everyday communication. We kiss to signify love and gratitude. We smile to signify that we are happy or pleased or any other positive emotion. And our speech? We speak to communicate emotions, ideas and stories. To ask questions or to give answers. To compliment those we admire, or to call out those we think have done wrong. We speak to stand up for ourselves and to let the world know we are here, and we matter.

But for me, I feel as though a lot of this has either been taken away from me or made more difficult for me. To understand my pain, you have to understand what a gift your own voice really is. How powerful it is. The other things I have listed are things you don’t even have to think about as much as your own breathing.

I’ve had many operations in the past to help me correct my mouth. It’s not bravery, its desperation. Each time I’ve become more and more determined to get my mouth to where most people have it. But soon it will all have to stop. The doctors will tell me that there is nothing left they can do for me and that this will be as good as it gets. I will have to accept that, just as I have accepted the rest of my disability. It will be hard, and I will have my weaker moments of self-esteem, but I will do it because I have no choice but to keep on living.

I will continue to speak out about appearance positivity because I know that people with disabilities and other young people need to learn to love their appearance and be proud. People need to learn to take a compliment graciously rather than argue about all the things that make them ugly. Young girls in particular should feel comfortable in their own skin and we need to eradicate this fake world view of what it means to be beautiful.

Beauty comes in all shapes, sizes, colours and features. I see so many beautiful people every day, not one of them looking the same and its amazing.

I want to say also that so many people have told me that “it’s what’s on the inside that counts”. Now sure, that might be true, but can you imagine every single person ever, saying that to you. Its bloody annoying! I’d like to encourage people to think differently. Everyone is beautiful on the outside. If you are a good person, it definitely shows. But being kind to yourself is just as important.

One thing that has always helped me with accepting my speech difficulties is my ability to write. It’s a magnificent gift I have been given to be able to still express everything I cannot say out loud, in a written format. I know others can still hear my voice through my writing and I am so grateful for that.

A beautiful song by Alessia Cara called “Scars to you beautiful” summarises this message perfectly.

You don’t have to change yourself, the world can change its heart.

Btw, I should clarify, I know now I am definitely not ugly. Aint nobody gonna tell me otherwise.

 

Share on
Previous Post Next Post

You may also like

12 Comments

  • Reply Karen Rosher

    I have moebius syndrome and can’t close my mouth or eyes, or smile.
    I can’t express anger or any other emotion either, but it is the smiling that is such a loss.
    People who know me, know I’m smiling on the inside a lot.
    It comes across in my voice and people who know me, say I smile with my eyes.
    All comes with working hard to fit in.
    I wish people understood the blessing of a smile, if I could do so, I would never stop and be smiling all day,at everyone. Somehow giving a smile is giving a tiny piece of your heart to everyone you meet what a wonderful thing to be able to do.

    January 6, 2019 at 1:43 am
    • Reply Claudia Forsberg

      I could not agree more. I would smile at everyone I meet too. its funny though, the people who matter most say that they can see me smiling so I guess thats the most important thing. but its also good to know you’re not along. 🙂

      January 6, 2019 at 11:25 am
  • Reply EJ

    My son has Pfeiffer’s Syndrome and also cant close his mouth, over salivates and struggles to be understood. Hes only 5. Hes oblivious to others who dont see what we see. I dont think he recognizes anything is different about him either, even when other kids tease or run in fear. And I’m ok with it as long as he knows we love and respect him and he can learn to love himself. Your demeanor thru your writing is what I hope he gains. You provided an old man hope today.

    January 5, 2019 at 11:00 pm
    • Reply Claudia Forsberg

      wow, that is an amazing compliment. thank you so much. I must say the fact that your son doesn’t know he’s different is not a bad thing and I hope he can stay ignorant like I did for as long as possible. but I truly believe that the day he realises somethings up, he’ll be able to get through it with the support of his loving family. thank you so much again, this is why I share my story.

      January 5, 2019 at 11:45 pm
  • Reply Jan

    Beautiful writing. As someone with moebius syndrome, i am also unable to make facial expressions and this made me life a little harder than the others. Always, always, the first impressions would be that i am rude or a snob or emotionless when in reality, if i could, i would smile at everyone i meet a long the way. Smile is contagious they say! But it’s somethig we are incapable of doing, sadly. But i try to look at it as a gift because even me being this way, i still have friends and loved ones who love me for who i am. And you know it’s genuine. I love how strong you are and how you know yourself deep inside. You are a beautiful person! It will take a while for someone to see us for who we really are on the inside, and i wished the world was a little less full of shitty people, but i do believe that you have a lot of love to give and for that you are already AMAZING!

    January 5, 2019 at 7:42 pm
    • Reply Claudia Forsberg

      Jan, thank you so much for your kind words, darl! its so nice to know I’m not alone and its true that the right people will see us for who we truly are. beautiful. xx

      January 5, 2019 at 7:56 pm
  • Reply Gemma

    Thank you for your beautiful birthday words. As I help my two year old begin to navigate a world that is often judgmental and rarely fair, it fills me with hope that beautiful people with strong souls (like you) will help to make the world a better place for my baby to live in.

    January 5, 2019 at 6:16 pm
    • Reply Claudia Forsberg

      Thanks Gemma, so glad to know I can help someone out there. the goal has always been to make the world a better place. still working on it 😉 xx

      January 5, 2019 at 7:58 pm
  • Reply frijolic14

    I always say that often it’s not always looks that are important but it’s always the personality that counts. if somebody has a caring nature I take the person for what they are and who they are we are all unique

    December 31, 2018 at 8:21 am
  • Reply Nicola

    Beautiful writing from a beautiful woman. x

    December 21, 2018 at 1:21 pm
  • Reply Anna

    OMG Claud. Your words are so incredibly powerful. You had me in tears in the ChOffice. You’re right, you are beautiful, both inside and out. I see it in your eyes when you smile and they practically sparkle with happiness. I see it in your writing and I hear it when you speak. Those who really matter to us know to look beyond the physical. Thank you for sharing your perspective.

    December 19, 2018 at 2:13 pm
  • Reply Lexy

    You definitely weren’t wrong about your gift in your writing or your beauty for that matter. Thank you so much for reminding me how much of a gift my speech is.

    December 19, 2018 at 11:07 am
  • Leave a Reply

    This site uses Akismet to reduce spam. Learn how your comment data is processed.

    %d bloggers like this: