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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities



I’ve Just Never Felt Beautiful

Laura [last name withheld]

On learning about this anthology, Laura was eager to contribute to it in any way she could. She was born with a bilateral cleft lip and palate and wanted to let people know what it was like to live with a facial anomaly. She explained it to me this way: “Societal pressures reinforce physical beauty and forget the internal person. It is important for individuals who are not necessarily beautiful to know they are worthy as individuals, too.”

When we first spoke, Laura was twenty-one and had already devoted a lot of her time to working with or studying about people with disabilities. She was in her junior year of college, majoring in psychology and hoping to go into the field of occupational therapy. Her work with people with disabilities “puts things in perspective,” she told me, helping her realize that “all people are beautiful, and some of us may not have it as bad as we thought.” In talking about her family — one older sibling and two “very special parents” — she said they had given her something she could “never thank them enough for: love, support, and strength.”

I have kept a journal for 12 years now. I started when I was nine years old. I was asked to write about how it feels to have a disability. I think my journal writings tell the story best. . . .

June 3, 1990

I sit here filled with feelings that I don’t know how to really describe. In a day I’ll be facing maybe the hardest thing I’ll ever face in my life. On June 5th I’m going to have plastic surgery that’s going to affect me for the rest of my life.

The operation is going to help my cleft-palate deformity. In other words, it’s going to help me with my facial deformity. The only way I can describe it is that I have a scar on my lip, my nose is pointed, and I have an underbite. I also have flat cheeks. I’m ugly, but each time I say that people say, “That’s not true” or “You are so pretty.” I know they’re lying or just being nice. I mean, when you’re next to somebody who says they’re fat, ugly, or they have terrible hair, it might be true that they’re fat, but to be nice or to make them feel better, you say the opposite. That’s been happening to me for years.

Then there’s times when someone says, “It’s personality that matters.” Sure, that’s true. But it’s that first attraction that counts. I mean, would you go for some nerd with a pocket protector for his personality!?!

Good looks really count in life. It’s so hard to meet people and be with people when you have a facial deformity. You should hear some of the things people think happened to you. Some of the comments I’ve gotten are, “Have you been in an accident?”, “Did your mom drop you when you were a baby?”, “Did you fall on your face?”, “Have you fallen down the stairs?” Most people don’t realize that I was born with my deformity.

I guess people feel that asking about my lip is rude. Actually, I really don’t mind. It’s much better than getting some of the comments I do. It’s not that bad now since I’m older (15). I remember one time when I was in about third grade and these fifth-grade boys would call me “Medusa.” At recess they’d play this game that when they saw me they’d turn to stone and freeze. They wouldn’t be able to move until someone tagged them.

Things like that happen to kids who are different. It’s not really fair for the kids who are born with a problem. It’s not their fault that they have a deformity or disability. They were born with it, they didn’t ask for it.

It gets easier as you get older since people seem to get polite. Instead, they stare at you. Once I was reading an article in which this little child with a deformity said, “All I want is to walk down the street without anyone staring at me.” I could relate to that. Not many people realize how it feels when people stare at you because of your face. It hurts enough not to be normal, people don’t have to remind you.

June 4, 1990

This operation I’m having on Tuesday is going to include reconstructing my jaw, bone grafting, filling my cheeks in, and maybe touching up my nose a little. My lower jaw will be cut on both sides and pushed back. My upper jaw will be moved forward. A chip of bone will be taken from my pelvis (hip) and be placed in my cheeks. They’ll be filled in and won’t be as flat. If everything goes fine, my doctors will try to pull my nose down a little. (As the surgeons say, “We’ll do some touchups.”)

I really don’t know how to react about what’s going to happen to me. It’s as though my whole body is ignoring all the preparing and planning for this operation. I’ve been self-donating blood, and I passed out the first time I did it. I have also gotten surgical wires on so they’ll be able to close my jaw shut for three months. That means no solid foods for about five to six months. Even with all the appointments I’ve had, it hasn’t bothered me. Only one time I got upset. It was after my dentist put my surgical wires on and we were ready to leave. He gave me a hug and told me good luck. Not all dentists do this, but I’ve had my dentist since I was about two years old. We’re very close because of all the surgeries and struggles I’ve been through. My plastic surgeon is very close to me also. I guess I’m close to all my doctors since I’ve had 17 operations. Not all of them have been for my cleft palate and lip, but most of them (5 of them have been for ear tubes).

My operation is going to be between 8 and 10 hours, or all day. It might not seem long for me, but for my parents it’s going to be hard. To me, it might be 8 to 10 minutes. When I wake up, my jaw is going to be wired shut and there will be a bandage on my face. I probably won’t know much for a couple of days, since I’ll be in the intensive care unit.

So much is going to happen to me and there’s going to be a lot of pain. I don’t know exactly what to expect or what’s exactly going to happen, either. The funny thing is that I seem dead. I have no feelings whatsoever. I have no reactions. Sometimes I think my body and mind just don’t want to think about it.

Tomorrow is my operation and I have no idea what the future will bring. I just hope it’s the best.

June 5, 1990

Today is my operation and my feelings still haven’t changed. I’m not nervous or anything. Maybe I’m scared, but it’s not showing. Sometimes I think that I want to have this surgery so I look better.

That’s one thing I’m worried about. People in the hospital have been telling me that I shouldn’t expect a miracle, but that I’ll look better. I guess that’s what I’m scared about. Being disappointed after I’m finished is frightening to me. After 17 operations, actually 12 plastic surgeries, I don’t want to regret all the work I, my doctors, and my family have done. I have no idea what to expect, I just hope I’m going to be okay.

I have about an hour left till I start heading to the operation room. I hate the sounds in there. There’s beeping everywhere and it’s so cold. The lights blind you as all the doctors put monitors, wires, and tubes on you. I’m not supposed to know all this because you’re supposed to be asleep.

I’m in the waiting room now. It’s where you go just before surgery. As I walked down the hall to come here I felt tears coming, but I decided that I’m going into this straight ahead. Maybe that’s why I’ve been like this. Maybe my defense mechanism is working really hard. I’m not going to cry since I can’t because of my parents. My parents are more worried than I am. But no matter what, I’m not going to cry. I’m going to go through this so well that I’m going to scare everybody. I’m just going to think of all the times with the comments, staring, and struggles. I’ve gone this far, and I’m not going to stop now. I have to be strong for my parents. My mom is crying now and she’s starting to make me scared, but I’m not going to cry. One thing that’s going to help me through this is my dreams. My dream is to become the person I want to be. But sometimes I can’t be that person, because I’m not pretty enough. After today, maybe I don’t have to worry about not fulfilling my dreams.

I don’t know how long I have left, but all I know is that I’m going to go through this with all my heart. I have to go now. . . . I’m strong.

June 25, 1990

Well, it’s exactly three weeks after my operation. Everything went okay. My doctors were thrilled at how everything went. I don’t know if I could say the same. I’m so swollen, but that was expected.

I don’t remember much about the surgery. People told me that that was good. My parents told me that I looked awful. My head and face were swollen almost out to my shoulders and I had tubes everywhere. I was in the ICU (intensive care unit) for two days. Lots of people don’t think I remember, but I do. It was awful. I was on a respirator so I could breathe. This went through one of my nostrils in my nose. Even though I was breathing all the time, there were times when I felt as though I wasn’t breathing. That scared me. The nurses there always assured me that I was, but their words never really helped. I found out later that I couldn’t breathe because of the secretions in my throat. All the blood and crap that formed during my surgery went down my throat. It couldn’t have gone anywhere else since my mouth was wired shut, which it still is. Another reason why I couldn’t breathe well was because I had two tubes up my nose, so I couldn’t breathe through my nose. Then I had to breathe through my mouth, which was wired up and didn’t have much room to breathe.

The nurses were always nice in the ICU. My first nurse I had was really nice. I remember there was a facecloth under my cheek and mouth, and she moved it away from my face and there were streams of blood coming from the facecloth. After she put a clean facecloth under my cheek, she sat there and moved her fingers through my hair. At the time, I was unable to tell her how much that made me feel better, but I have a feeling she knew.

After two days in the ICU, I was moved onto a regular floor. There I had a primary nurse named Carol. I had Carol before. I had most of the same nurses that I’ve had on other operations. Of course, Clair was the one that helped me a lot. She has worked on plastic-surgery cases before and understood what was going on. Clair was a big help when times became really painful.

Yes, there was pain! I had 13 tubes all together. Several were in my arm. One tube was an IV and the others were for blood transfusion and extra IVs during surgery. I guess you can call it a backup. I had a blood drain for my hip due to taking the bone. I also had a catheter.

Day by day, I lost a tube. Each time I lost a tube, I was able to be more portable. The only problem about walking was that it was painful because of my hip.

May 21, 1991

Life is unpredictable. Sometimes I feel nothing comes my way. It seems like everyone else has the luck. It gets very frustrating and tiresome. I’m so tired of it that I’m ready to quit. I don’t feel like achieving anything anymore. People tell me that I’m pretty, but I don’t feel pretty. If I was pretty, wouldn’t people be asking about me? I’ve never had a boyfriend, and I am certainly no beauty queen. You know, it seems to be the most important thing to me and I don’t have it. And I’ve worked hard to be pretty. All the surgeries, were they worth it? Maybe it made me better, but I’m selfish. I want it all. I know I am lucky to have what I have, it could be worse. Sometimes it’s hard not to get upset. I wonder how my life would be without my birth defect. It makes me wonder when I’ll find a guy for me — will I ever? I’m 16 and I have never been kissed. Don’t laugh, I know it’s pitiful, but I want to kiss a guy that I like. I want to show a guy myself and show him everything. I want to share a piece of myself with someone.

April 27, 1996

The word appearance is significant to me. It represents my life, my anger. Every problem I face, every frustration or anger I feel, it always comes down to my appearance.

I was born with a bilateral cleft palate and lip. It is a birth defect, which some may call a disability. I am a normal adult, except I have a scar on my upper lip. My nose is not perfect, although years ago surgeons worked on it. I used to have an underbite, but that was fixed as well. Having a cleft palate and lip has affected my ears, too. I have had surgery five times to replace the tubes in my ears. My motor, communication, and cognitive skills are fine, therefore I never thought of myself as having a disability. If you look up disability in a dictionary, it is defined as, “to make incapable or physically unfit.” Physically unfit . . . I guess I do have a disability. According to society’s terms of beauty, I am definitely physically unfit. I don’t have blonde hair, blue eyes, a thin, almost anorexic, body, or the perfect face.

I have a wonderful life. I have a wonderful family, which has supported me. I have friends that are there for me, too. I attend an elite private college and am getting a good education. I have never had any major burdens in my life. My needs have always been met. I just never felt beautiful.

Not feeling beautiful or socially acceptable affects my self-esteem greatly. I am 21 years old, and I have lectured to children with the same defect. I tell them that what we have makes us stronger. Our experiences make us special. This is true, but it does not help my confidence. I will say words of encouragement to a child, then turn around and hide from people’s glances by placing my long hair or hands on my face.

I can speak in front of an audience about certain subjects, because I dissociate myself from the experience. I look at it as my intelligence or personality on stage, not beauty. Then take me to a party, and I suddenly become this individual who hides in the corner. It’s because I don’t want to feel the rejection or the glances of others who look at me not because they find me attractive but because they find me ugly.

People who know me would describe me as independent and stoic. The reason I am so independent is because I pretend that I don’t need anything or anybody except myself. I walk around concentrating on my future, working hard in school, and trying to add more impressive experiences on my resume. I am self-determined. It is a good quality, but I have it because it is one way for me to keep myself busy and not think of how lonely I can get. No one knows that I want someone to share myself with. No one knows that I have no confidence because of my appearance. No one knows how angry I am inside. They do not know how all my concerns and angers are vented and blamed on my birth defect. No one knows that my life is partly an act.

Thanks for listening,

For more information about the disabilities discussed in this story, please visit the Resource Links page.




spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
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