Cleft Lip and Palate
Perception of self and appearance with cleft
We spoke to 15 people aged between 17 to 65 years of age about their experiences of being born with a cleft lip and/or palate and the impact it has had on their lives. Some of these were also parents of children born with clefts. While they discussed experiences of bullying in their early years over time they had come to accept that they had a visible difference and, for some, that their speech sounded different to others within their social group.
Most people had positive experiences of the surgery they had received as children and teenagers and were satisfied with the outcome as far as their appearance was concerned. They also believed that the other treatments they had received from the cleft services, including speech and language therapy and psychological support, had helped them to feel more accepted by society. (See ‘Social interaction and public awareness’ and ‘Social interaction and relationships’).
They described having strong personalities and they attributed this to being born and living with a visible and/or speech difference. They also expressed a determination to achieve their life goals: for example, many of those we interviewed had pursued careers in the public domain such as teaching and education, healthcare and the arts.
I don’t actually recollect much about, you know, being made aware that I was different until I actually went to school.
I started, you know, at about age 4. And... I remember little comments from the other kids. Kids are naturally quite curious: if they see something different they want to know.
Yeah sure.
And my mum remembers after the first day, my first day of school coming back and I said, “Mummy, what’s wrong with my face?” And that was her first sort of experience of what was... to come basically, all the questions and everything like that. And it sort of snowballed from there. I mean my school years were... bit of a roller-coaster. Of course kids can be very cruel, especially when they don’t understand what, you know, what they don’t, you know, with something different they don’t understand it and they can be very, very cruel. So, yeah, I got bullied, I got teased. But that kind of spiralled spurred me on to... basically be the person that I am today, you know, I am very determined, and if someone says, “You can’t do this because of this, that and the other,” I try and set out to prove that I can.
OK.
So it’s made me the person I am.
OK so you fought back in your own way or?
Yeah I think that, I think my parents definitely helped with that, because they’re both very, very driven, very determined people anyway, and they kind of made me... the sort of saying of ‘don’t let them get you down’ sort of was very well... very, that basically summed up what they stood for, and what I stand for is the same: don’t let them get you down.
It does take time to develop ways to deal with it. At first it’s very hard and you just want to run away from it all but that’s not the answer. Ye ken I personally found people that I could talk to, whether it be people at school or family and... you just kind of... you kind of... you learn to accept that you’re born with a cleft, and that’s not going to change. And over time you learn to think, “That is what makes me different and that’s actually a good thing.” But until you reach that point, you need to find a good like support network to kind of talk over what you’re thinking because if you don’t voice what you’re thinking, nothing’s going to get done.
Right.
So... like I feel it’s quite important to talk about it.
Have there been any particular difficulties you’ve had at all?
... In terms of social?
Yeah or any particularly positive things, rather than focus on negative.
Yeah positive things just... having a good support network and helping the... helping you to come to terms with, as I said, helping you to come to terms with the fact that having a cleft is a good thing. It’s not... everyone’s going to have something that makes them... different, and you don’t want to be like everybody else, and having a cleft gives you a story, it makes you who you... it makes you who you are... and it shouldn’t be seen as... a negative. People might treat you like it’s a negative, and they might say things, but... you know, I’m sure they’re not perfect, and their imperfection might not be noticeable as having a cleft is, so yeah.
Having a visible difference was not always viewed in a negative way by adults born with a cleft. For example, as a teenager it suited Jon’s personality that he looked different from the other boys in his school and he believes he would have been teased by other boys even if he didn’t have a cleft.
There was some concern amongst younger adults born with a cleft that health professionals, particularly cleft surgeons, were continuously striving to improve their appearance despite teenagers and young adults being comfortable with their looks.
I mean I did have quite a long time to think about it, think about my treatment and what I was going to go through. ...The only thing I would say about my surgeon, especially in the latter stages of my treatment, was I felt like I wasn’t really a person, I was more like a canvas, which I didn’t particularly enjoy. You know, I’m thinking, “I’m a person, I’ve got a heartbeat, treat me like an indivi- treat me like a human being rather than just a painting which needs, you know, things sort of, you know, improved on.” That was the one thing that I really didn’t like. And after my last operation my surgeon said, “Right, we can do ...a little more just to tidy the nose up,” and I said, “I don’t want any more. I don’t want any more surgery,” you know.
How old were you at this point?
I was 22 when I had my last op. And so we’re sort of talking about sort of almost four years ago now. And I said, you know, “I’ve been through enough surgery, I’ve been through enough pain, I’m very happy with the results, I don’t want any more work done. I’m fed up,” you know.
Right.
And I think he was actually quite taken aback with me sort of saying, “No, enough is enough, I don’t want any more surgery done.”
OK so would you say from their perspective there’s a kind of never ending kind of process of refinement and?
Yeah I do. I think definitely when it comes to surgeons, surgeons are always going to be perfectionists, they want something to look as good as they, you know, as they can. And possibly, yes, he could have done more to improve the way that my nose should look but, you know.
Right.
I don’t, well I just said, “Look, I don’t want any more done,” I said, “I’m so, I’m so thankful that you’ve done what you’ve done to me already, you know, I’m so happy with the results, but I just don’t want any more surgery done.” And I think he was... he accepted that, but I think he was quite sort of taken aback, because I think he thought that I would say, “Yeah I want more and more and more and more and more.”
Yeah.
But I just said, “No, enough is enough, I don’t want any more.”
OK.
So, but he respected my viewpoint.
Yeah so I started having singing lessons. And then I wanted to play the piano. And then I kind of dabbled in instruments: I’d pick up a guitar and, you know, you kind of experimented by yourself. Once you learnt what the notes were it was... you’d go off and you’d practise and work it out, you know.
Yeah.
And that was part of the fun of it for me, I think.
So could you explain a little bit more about your relationship with music and your confidence levels?
I think... the thing I love about it is when I am performing or you know, even when I’ve done exams or, you know, whatever, I find that quite often an audience will look at me and then they might see that I have a cleft lip and... and then they’ll make a judgement, and then I’ll start playing or singing and then their judgement will change.
Yeah.
And I like that I have the power to do [laughs] that with the music. And…
That’s interesting.
You know, I feel like the music is the real part of me more than the issue with my face. And... you know, it’s nice that I get the opportunity for... to change their judgement of me through the music.
That’s interesting yeah, yeah.
I think it’s really powerful anyway.
Hmm so that’s kind of, it’s been a coping mechanism in a way?
Yeah, yeah.
Yeah OK. And do you write some of your own material or do you?
Yeah.
Yeah, do you write from personal experiences or?
Yeah.
Yeah.
I mean just recently I did a portfolio at uni which was all my own compositions. And one of them was completely about... like the battle with surgeons and…
OK.
…feeling like I didn’t have a voice.
Last reviewed June 2017.
Most people had positive experiences of the surgery they had received as children and teenagers and were satisfied with the outcome as far as their appearance was concerned. They also believed that the other treatments they had received from the cleft services, including speech and language therapy and psychological support, had helped them to feel more accepted by society. (See ‘Social interaction and public awareness’ and ‘Social interaction and relationships’).
They described having strong personalities and they attributed this to being born and living with a visible and/or speech difference. They also expressed a determination to achieve their life goals: for example, many of those we interviewed had pursued careers in the public domain such as teaching and education, healthcare and the arts.
Lizzie was not aware of her visible difference until she went to school and this experience has helped to shape her character and her self-determination to succeed in life.
Lizzie was not aware of her visible difference until she went to school and this experience has helped to shape her character and her self-determination to succeed in life.
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I started, you know, at about age 4. And... I remember little comments from the other kids. Kids are naturally quite curious: if they see something different they want to know.
Yeah sure.
And my mum remembers after the first day, my first day of school coming back and I said, “Mummy, what’s wrong with my face?” And that was her first sort of experience of what was... to come basically, all the questions and everything like that. And it sort of snowballed from there. I mean my school years were... bit of a roller-coaster. Of course kids can be very cruel, especially when they don’t understand what, you know, what they don’t, you know, with something different they don’t understand it and they can be very, very cruel. So, yeah, I got bullied, I got teased. But that kind of spiralled spurred me on to... basically be the person that I am today, you know, I am very determined, and if someone says, “You can’t do this because of this, that and the other,” I try and set out to prove that I can.
OK.
So it’s made me the person I am.
OK so you fought back in your own way or?
Yeah I think that, I think my parents definitely helped with that, because they’re both very, very driven, very determined people anyway, and they kind of made me... the sort of saying of ‘don’t let them get you down’ sort of was very well... very, that basically summed up what they stood for, and what I stand for is the same: don’t let them get you down.
Iona believes that having a cleft may make her different from others although it does not define her as a person. To be able to accept having a cleft it is important to have good support and be prepared to talk to others.
Iona believes that having a cleft may make her different from others although it does not define her as a person. To be able to accept having a cleft it is important to have good support and be prepared to talk to others.
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Right.
So... like I feel it’s quite important to talk about it.
Have there been any particular difficulties you’ve had at all?
... In terms of social?
Yeah or any particularly positive things, rather than focus on negative.
Yeah positive things just... having a good support network and helping the... helping you to come to terms with, as I said, helping you to come to terms with the fact that having a cleft is a good thing. It’s not... everyone’s going to have something that makes them... different, and you don’t want to be like everybody else, and having a cleft gives you a story, it makes you who you... it makes you who you are... and it shouldn’t be seen as... a negative. People might treat you like it’s a negative, and they might say things, but... you know, I’m sure they’re not perfect, and their imperfection might not be noticeable as having a cleft is, so yeah.
There was some concern amongst younger adults born with a cleft that health professionals, particularly cleft surgeons, were continuously striving to improve their appearance despite teenagers and young adults being comfortable with their looks.
Although her surgeon was suggesting further operations Lizzie reached a point where she was content with her cleft treatment and her appearance.
Although her surgeon was suggesting further operations Lizzie reached a point where she was content with her cleft treatment and her appearance.
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How old were you at this point?
I was 22 when I had my last op. And so we’re sort of talking about sort of almost four years ago now. And I said, you know, “I’ve been through enough surgery, I’ve been through enough pain, I’m very happy with the results, I don’t want any more work done. I’m fed up,” you know.
Right.
And I think he was actually quite taken aback with me sort of saying, “No, enough is enough, I don’t want any more surgery done.”
OK so would you say from their perspective there’s a kind of never ending kind of process of refinement and?
Yeah I do. I think definitely when it comes to surgeons, surgeons are always going to be perfectionists, they want something to look as good as they, you know, as they can. And possibly, yes, he could have done more to improve the way that my nose should look but, you know.
Right.
I don’t, well I just said, “Look, I don’t want any more done,” I said, “I’m so, I’m so thankful that you’ve done what you’ve done to me already, you know, I’m so happy with the results, but I just don’t want any more surgery done.” And I think he was... he accepted that, but I think he was quite sort of taken aback, because I think he thought that I would say, “Yeah I want more and more and more and more and more.”
Yeah.
But I just said, “No, enough is enough, I don’t want any more.”
OK.
So, but he respected my viewpoint.
Mary Z was born with a cleft lip and palate and she also has skeletal dysplasia. She considers that her cleft is not a defining feature and reached a stage as a teenager where she refused further cleft treatment.
Mary Z was born with a cleft lip and palate and she also has skeletal dysplasia. She considers that her cleft is not a defining feature and reached a stage as a teenager where she refused further cleft treatment.
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That I didn’t have any associated problems. So, you know, I guess mine has been a fairly straightforward case. But it’s just like with anything that makes you look different, I think you just have to get on and do what you want to do. You can’t let what other people think or, you know, how other people treat you hold you back. And that’s not to say that there’s been times people have made comment about me, I would say, you know, it’s more likely they’d comment about how... the fact that I’m very small or, you know, what a small person. You know, I’ve had some very cruel comments made to me regarding my size, but you can ... you hear it and, yeah, sometimes it does hurt, and I’m sure it’s the same with people that have a cleft lip and palate, that perhaps are more visible than mine, but you can’t let it be the reason that you don’t do something.
So it’s not a defining feature?
No it absolutely isn’t. And I think the way things are now with surgery getting even better, I mean as a teenager I met a plastic surgeon and they discussed what else they could do for me.
OK hmm.
And my decision was very practical: I said that I’d had enough surgeries in my life and I didn’t want anymore, that I could breathe well, I could eat well, I could speak well, and that really visibly on the face of it most people didn’t really notice that there was anything else different about me, and I chose not to pursue any more surgeries.
How old were you at that point?
I think I was in my early teens. I think I was maybe 12, 13, 14, that sort of age group, perhaps when it mattered most to me how I looked. But I wasn’t prepared with the pay-off, you know, I’d had, as I mentioned, other surgeries, and some of them were quite enormous and had been not so great, and I just thought, “No I’m not prepared to go this way.” And, yeah, when I became older, like when I was at university, there were times I thought, “Maybe I should have opted to have my nose changed,” you know, and it was probably a notion maybe in a moment when maybe socially I didn’t feel as confident as I had at other times. But... it passed and I certainly never felt that... the need for... you know, my fear of surgery and my unwillingness to undertake the surgery far outweighed my need or, or willingness to change my face, you know. As I say, it might depend on how different you feel you look.
Hannah creates music as a form of self-expression and it has helped her to be more confident about herself.
Hannah creates music as a form of self-expression and it has helped her to be more confident about herself.
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Yeah.
And that was part of the fun of it for me, I think.
So could you explain a little bit more about your relationship with music and your confidence levels?
I think... the thing I love about it is when I am performing or you know, even when I’ve done exams or, you know, whatever, I find that quite often an audience will look at me and then they might see that I have a cleft lip and... and then they’ll make a judgement, and then I’ll start playing or singing and then their judgement will change.
Yeah.
And I like that I have the power to do [laughs] that with the music. And…
That’s interesting.
You know, I feel like the music is the real part of me more than the issue with my face. And... you know, it’s nice that I get the opportunity for... to change their judgement of me through the music.
That’s interesting yeah, yeah.
I think it’s really powerful anyway.
Hmm so that’s kind of, it’s been a coping mechanism in a way?
Yeah, yeah.
Yeah OK. And do you write some of your own material or do you?
Yeah.
Yeah, do you write from personal experiences or?
Yeah.
Yeah.
I mean just recently I did a portfolio at uni which was all my own compositions. And one of them was completely about... like the battle with surgeons and…
OK.
…feeling like I didn’t have a voice.
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