Cleft Lip and Palate

Social interaction and relationships

The adults we spoke to who were born with a cleft lip and/or palate had a variety of experiences when interacting with others. They talked about differences in the level of comfort that other people showed when meeting or mixing with somebody who either looked different, or sounded different or who had hearing difficulties.

Such experiences were generally more positive in adulthood than those in childhood or during the teenage years. A common view expressed by the adults was that their self-confidence increased the older they got. Improvements in self-confidence were associated with support and guidance from family and friends and also support from speech and language therapists, psychologists and counsellors. Confidence in social situations also seemed to have a positive impact on aspirations and life plans!

The support that these people received from others had helped them to develop strategies for dealing with and counter-acting unwanted comments or negative reactions from others, either in social situations or at work. They believed that negative comments about cleft and its associated symptoms were usually based on ignorance and fear rather than intentional cruelty. The adults we spoke to were open about answering questions about their cleft and were happy to addressing comments from members of the public as this can help raise awareness of the condition. (See ‘Perception of self and appearance’ and ‘Social interaction and public awareness’).

Since leaving school Gemma has become more confident about her appearance. She is open to people asking her about her cleft as she believes that it helps to raise awareness of the condition.

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Age at interview: 18

Sex: Female

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It’s been really good. I mean obviously I go clubbing, as a young adult. I have been clubbing once or twice, and you do meet people that look at you a bit strangely because you look different from what, you know, normal people would look like without a cleft palate. But when you’re out people don’t really look... and think of me any different. I mean they might look at me and give me a few strange looks, but they won’t treat me any differently.

Compared to what it was like when I was at primary school, people, I’ve found older people are more accepting of it.

Yeah.

It’s like young children are. I think it’s that, that middle ground: there’s always that, you know, not sure of what it is. But I’ve found older, older people have actually come up to me and asked me what I’ve got and how I deal with it.

Are you open to that approach? Are you happy to be asked and?

Yeah I mean I’d rather they asked me than take the mick out of me. So if... I think, I think most of the reason why they take the mick is because they’re ignorant of it; they don’t know what it is like in my experience anyway. And once I’ve explained what I’ve got, that I’m just the same as anyone else and, you know, I just look a bit differently, they seem to accept that. And then obviously working as what I do, wanting to be in a primary school,

I have done placements in other schools and I have... had... them, other teachers even ask me questions about what I go through. And… people just seem to... I’ve found other people seem more accepting of it once they understand what it is. And they’re more adult about it by just coming up and asking me, rather than considering to what I was like at primary school and secondary school having people take the mick. I think there is that difference, the maturity there.

And on the positive side as well, I’d say I’ve got a really good support system with my family and friends, and they’ve always stuck up for me and been there to help me when I’ve struggled sometimes. And... I suppose that’s a big positive, is having the, the great support system I do.

Yeah sure. And I was just wondering if you had any strategies for other young people, anything you wanted to express or?

I mainly just am open with them, and if they have questions, like again with that young girl who had a cleft palate and hare lip, I’m just... I told her to be very open, and not to take it all to heart when people do take the mick, because most of the time it is out of ignorance: they don’t know what you have.

Yeah sure.

So... I would say to other people who have got a cleft palate and who aren’t sure what to do, I would say to just be very open and honest and not take anything to heart if people do pick on them. Because obviously, as long as you’re OK with how you look, that’s really what matters.

After leaving school Iona went to work in a restaurant before going to University. The experience of working with other people and public helped to boost her confidence.

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Age at interview: 19

Sex: Female

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So you left school when you were 18 or?

I was 17.

So did you go straight on to university after doing A Levels.

No I took a year out.

Sorry?

I took a year out.

OK what did you do in your year out?

I just worked in a restaurant for a year which was…

So did you work in the caring field or something different?

No, no I... it was kind of a last minute decision to take a year out, and it was just kind of just a regular job in a restaurant, nothing…

OK a restaurant yeah.

Yeah but…

And was that a situation which boosted your confidence?

Yeah, yeah.

Because obviously in a restaurant you’re meeting a lot of people and…

Yeah, no, definitely, it was definitely beneficial and…

Would you say it was a confidence boost?

Yeah it was in terms of kind of coming out your shell a wee bit more, kind of going from school where everything about school was... remember about being bullied, and not being happy as I was meant to be, and to then kind of going somewhere new and meeting new people, and nobody knows anything about that, and you don’t really have any memories of, like any bad memories, no. It was it was good to go somewhere where people didn’t point and ask questions.

So was that in town or?

Yeah, yeah.

So you did that for a year and then…

Yeah.

…and then applied for university?

No, no I already had a place.

Oh you already had a place, yeah?

Yeah so then just left the job to go to university.

So how would you compare university life with school life?

Oh completely the opposite end, like chalk and cheese, like two different. Obviously with the... the degree I’m in people like... people are more able to understand and people will be different. And, no, there was... I mean there’d be a few incidences of just people being just life, people being, you know, kind of comment on the way you look, or comment on the way you speak. But, yeah, you just brush it off.

That’s nice. OK so you’ve done your first year at university.

Yeah.

So how does that feel to have that, to sort of be on that trajectory now?

Yeah it’s certainly a sense of achievement and... it’s good to... kind of... yeah it’s a sense of achievement ...to know that you wanted to go somewhere and you were like... and you achieved it when people didn’t think you would.

When you say ‘people didn’t think you would’ who do you refer to?

Oh just like from school, you know.

Is it peers or teachers?

Peers.

Or both?

Oh both I suppose. I suppose when... kind of from school where people just kind of thought that she was bullied you know, “She’s in her shell, she’s got no self-esteem, no confidence; she’ll not get anywhere.” And then kind of working your way up and proving the people wrong, so yeah.

Younger adults spoke about how their confidence and their relationships with others improved after leaving school. They believed that further and higher education environments offered more accepting communities in which diversity was valued.

Hannah experienced a big change in the attitude of others from leaving school to going to a college of further education. This change in attitude helped her gain greater self-confidence.

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Age at interview: 22

Sex: Female

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An all-girls school is... it can be quite difficult.

But... it’s the school I wanted to go to: my friends were going there, both my sisters had been there.

OK hmm.

…So, yeah, there wasn’t really a lot of option.

OK but it’s what you wanted at the time?

Yeah, yeah.

And is there anything particularly difficult about going to an all-girls school?

I think...

Or particularly positive?

Girls, girls are just very… like they’re very self-conscious and very judgemental as teenagers. And... you know, I definitely picked up on that. I’m not saying it would have been easier if boys were around, because I don’t... I haven’t had that experience.

Yeah.

...But I thin ... having been in a mixed primary and middle school it... you know, the balance is better. But, yeah... all-girls school…

That’s how it was?

…that’s how it was [laughs].

That’s your experience was and that’s what you know, yeah.

Yeah.

OK. So at what point did you leave school?

I left school at 16 after my GCSEs.

OK and what happened next?

I did a music course at college.

OK what was that like?

I loved that. That was kind of... the making of my confidence and…

OK.

..you know, I really kind of found myself there. And it was just college is a much more accepting environment, and I really felt that from the people on the course and everything else. So that’s really good... memories for me, really good experience.

And was that music theory or music technology or a bit of both or?

It’s... so it’s music on the theory and then the practical side, so every couple of weeks we’d perform to each other.

Oh OK.

And you know, we’d practise all the time... but yeah.

And where did you do that, where was that?

That was in [place], and that’s like half an hour away.

Oh yeah I think we came through that on the train, yeah.

Yeah.

OK so it’s still quite local to you?

Yeah, yeah.

And familiar to you, yeah?

Yeah.

And did you make some friends there as well?

Yeah I mean I didn’t know anyone there…

OK.

…so it was... you know, I was [laughs] terrified.

Were you? Yeah.

But... I got there and within a few days, you know, it was just so laid back that you couldn’t get on... not get on with people, do you know what I mean? Because... yeah.

Yeah so you met like-minded people?

Yeah.

When Jon left school and his family home to go to university he found the excitement of his new life overshadowed having a visible and speech difference?

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When Jon left school and his family home to go to university he found the excitement of his new life overshadowed having a visible and speech difference?

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Age at interview: 38

Sex: Male

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OK so if we could move on to post school years and the transition into adulthood, what was that like?

I think always a bit stressful [laughs]. I don’t think, again, I don’t think that’s [laughs] got much to do with necessarily having a cleft, it was just a, a kind of discovery. I think, I think also you become more aware perhaps of the way you look. I mean I think certainly the cleft, by adulthood, didn’t stop me doing anything physically, if you know what I mean. It’s not a, you know, it’s not a disa- I don’t see it as a disability in that, that respect. So I think... you just become conscious about how you look, I think that’s really the primary thing, perhaps how you sound as well, but mostly how you look. But I, I went to university straight out of school and then had quite a kind of odd... odd sort of four or five years. Went to university, left university, did travelling, set up a business which failed, went back to university all within the stretch of about five years.

Oh right yeah that’s quite a lot of…

Very odd [laughs]. I moved to London, met a whole new bunch of people, quite a lot of kind of weird and wonderful people, kind of it was just a very... quite an exciting five years. I put it that that was the period between leaving school and actually [laughs] getting a proper job I guess. And... I think actually the... the kind of rollercoaster of that time combined with those, you know, being 18, 19, 20 etc., perhaps... overshadowed any... issues around having a cleft, to be honest. I was just doing stuff that came along in quick succession.

Lizzie adapted well to the transition from school to university and has an open attitude to others who ask about her cleft.

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Age at interview: 25

Sex: Female

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I’ve never had a very big circle of friends. I’ve always been that kind of person who I have very, a few sort of very, very close friends. I did have experiences at school where I thought people who were my friends turned out that they weren’t. Because I went to an all-girls school, and actually I found that girls were worse than boys, because they can be incredibly catty and they can be incredibly cruel what they say.

Was this at primary school, was this an all-girls?

Primary school and secondary school I went to all girls.

Hmm OK.

And it wasn’t until I actually got to uni that I actually started socialising with boys again, and that was a... that was an experience. But when you get to university people don’t really care, because there’s so many different, you know, groups of people that, you know, they don’t see it, they don’t see the cleft, they don’t see anything, they just see you.

Where is this, sorry, at?

At university yeah.

So you found university distinctly different to school, in terms of socialisation?

Absolutely. I was quite... I was nervous about university because I didn’t actually know what to expect. But literally within the first couple of days I’d sort of settled in and was absolutely fine. Because I found that there were quite a few girls who had never been away from school…

OK yeah.

…and I could help out with that, because I went to boarding school.

OK yeah.

And that, you know, I could help them with their homesickness and things like that. So that sort of helped me.

People born with a cleft may have hearing difficulties. This can affect the sound of the voice and therefore affect social interactions. Those with hearing problems may wear hearing aids and lip read to improve their communication with other people.

Suzi recalls how her daughter Kendal was fitted with hearing aids as a child. Kendal continues to wear hearing aids as an adult.

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Age at interview: 24

Sex: Female

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Kendal: Well I don’t know, I think I had the perspective that I couldn’t hear very well, I’ve got something in my ear that makes me hear very well, probably had a, well I’m giving myself a lot of [laughs] intelligence there, but I... this thing in my ear is helping me to hear. And I like, I like sounds. You know, I like... I like being able to hear, funnily enough [laughs].

OK so that was a positive reinforcement in itself, the fact that you?

Kendal: Hmm I can hear so…

It gave you access to sound and communication?

Kendal: Yeah I mean even when I get a... well I recently had a hearing check-up, and even when they tweaked them a little bit I thought, “Ooh, ooh that’s a new sound I haven’t heard before.” So really simple things, “Ooh,” I got in the car and said, “ooh yeah, that’s what a car engine sounds like.”

Yeah.

Kendal: You know, so simple things you just go, “Oh.” I kind of... they’re there to help me, and I’ve always, I think because you’ve had such a positive attitude with it, well people wear glasses, yeah OK you get, you know, when you’re a kid you can be, you know, specky four-eyes or something like that, and... I mean I do wear glasses, I’ve got contacts in at the moment, but... there shouldn’t be a stigma with glasses, well there isn’t really a stigma with glasses, in fact they’re quite cool now, but with hearing aids I thin ... they, I, they were always the thing that old people wore.

Suzi: Hmm.

Kendal: And I think you did a very good job of sort of... “That’s just you, Kendal that’s fine.” And I was just like, “Oh yeah OK, I’ve got hearing aids.” And I do remember kids coming up to me and going, “What’s that in your ear?” “It’s a hearing aid.” I was, I wasn’t very, I wasn’t fazed by people...

Suzi: I can remember you…

Kendal: almost trying

Suzi: Yeah, I can remember you in ‘show and tell’ at school…

Kendal: Yeah.

Suzi: …when you had the moulds.

Kendal: I used to bring in the moulds to show kids, “This is? what my ear looks like,” with the mould.

Suzi: Yeah.

Kendal: I used to be quite excited about it. And... I think because I was quite open about it, it kind of... then puts it on show and then people can’t really... question it, or they just accept that’s you, that’s a part of you. It’s like, “Oh right, yeah, she’s deaf.”

Some of the adults we spoke to had to make more conscious of having a visible difference and can have an impact on romantic relationships.

Last reviewed June 2017.

Jon talks about looking different and the impact that can have on confidence in social situations, career choice and romantic relationships.

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Jon talks about looking different and the impact that can have on confidence in social situations, career choice and romantic relationships.

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Age at interview: 38

Sex: Male

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But that’s sort of the impression I... certainly very practically meeting someone for the first time, that’s perhaps when one feels the most difficulty. ...And I guess also quite often avoiding large groups of... teenage kids, you know, because they tend to... be the ones that kind of point and laugh, which is just a bit boring. And I’m not really, I’m not really a confronter.

So you wouldn’t want to go into the teaching profession or?

I’m not particularly a confrontational type person so I... I’d rather avoid that situation than confront. And, to be honest, trying to confront that situation, you’re not going to have a kind of sensible conversation in that environment anyway, to be honest.

So do you find yourself, I mean steering away from those sorts of situation then?

Yeah sometimes maybe, yeah. Not with adults particularly, I think.

But I was just thinking, with the kind of work you do, you must find yourself around young people quite a lot?

Find myself what, sorry?

Find yourself around young people?

No not really. No I’ve never really. Most, to be honest, most of my work tends to be with, you know, professional adults, so it’s never really been an issue particularly.

OK.

And actually, strangely, the kids who are involved in the arts again tend to be on the more intelligent, liberal end.

Yeah sure.

[laughs] I know that’s a generalisation, but it’s been my experience so it’s tended to be true.

I was just wondering what advice you’d have for other people, adults with clefts in confronting difficulties.

It seems almost the best bit of advice is not to identify yourself, is not, for that not to be a too... key aspect of your identity particularly.

Yeah.

There’s not much, not much other advice I can give, because each person’s different and each person’s personality is different. But I think not identifying oneself primarily as someone with a cleft, that it is just an aspect of your- yourself like... any other, you know, your height or your gender or your sexuality or whether you’re boisterous or quiet, or other aspects of personality and individual… and it’s just one of those. But that’s not to say, that’s not trying to underplay its significance but…

Yeah it’s just one of many things that…

…but not to overplay its significance either.

OK yeah, one of the many aspects of your identity, yeah.

Exactly. That’s one, that’s one of many.

OK we’ve covered quite a lot of topics so far, and I just wondered if there’s anything you wanted to address which hasn’t been raised in the interview so far, is there anything you wanted to say?

No I don’t think so. I mean I think one of the, one of the things that’s come up a few times at Adult Voices through, just through personal discussions, has been that of... sort of dating people and meeting people for the first time romantically.

OK yeah, yeah.

And that’s been quite an interesting... discussion with people actually. That can, that can loom quite large I think for some people, in that if there’s one thing that looks affects it’s your sense of whether you’re attractive to other people, which is kind of irrelevant in the workplace and kind of irrelevant to your friends probably and kind of irrelevant to your family I think, but perhaps more relevant in a society where how you look is perceived to be quite important for, for, for kind of meeting partners.

Yeah sure.

And perhaps more so for girls. Inevitably I would suggest the guys I think... but that... has been... was quite an interesting topic that consumed quite a lot of one particular Adult Voices meeting.

OK.

And it kind of branched out into a Facebook conversation. And it’s something that perhaps some people feel awkward about discussing, but I think it’s quite a... it’s up quite high up there in the list of things that adults have to deal with when they look slightly different.

For Lizzie, meeting a long-term partner has made her more confident in her personality.

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Age at interview: 25

Sex: Female

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I mean I’m, since I’ve been with my other half, I’m more inclined to show how I feel.

He’s sort of breaking down the barriers a little bit by little bit. And he... in the... early stages of our relationship it was quite difficult because he was the first sort of proper partner that I’d had and... it took me a lot of getting used to, the fact that someone actually found me beautiful, someone who actually loved me for me, and that took a lot of getting used to.

OK I appreciate that.

A lot of getting used to.

Yeah, so how long have you known each other?

...Been together for five and a half years and we sort of knew each other a few months before then and, you know, that, so I’d say cracking on for six years, so... a long time, a long time.

So it’s a well-established relationship, yeah?

Yes, yeah. And you know, he did ask a couple of questions but it was more sort of... it wasn’t in a way which made you think, “Oh, you know, I want to hide,” it was just, you know, he wanted to know more about... you know, the scar…

Yeah sure.

…you know, the tell-tale scar of the cleft lip, more than anything else. So... I told him... so.

Ryerson talks about dating and social relationships at school and his progression to University.

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Age at interview: 41

Sex: Male

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I’ve always been self-conscious of the way I look, always will be. But... after I started getting the nose repaired and rebuilt I guess some of my confidence came back. It... probably affected my ability to date for, you know, junior high school, but that... didn’t hold me back after that.

Hmm so what age was that then?

...Probably...

I’m a bit confused with high school in Canada, yeah.

Oh yeah, yeah, no worries. So we go, depending on the province, we go from Grade 1 through Grade 13.

Yeah.

I think everywhere has got rid of 13 now. So you would be in junior high from Grade 8-10 and high school from 11-13. So junior high school, when others were beginning to date, and that was before I had had some of the last... round of reconstruction surgery on my nose, I was not the most datable of the guys. I was outgoing more than most, so I could compensate for some of that, but…

Outgoing in what way?

I’d go across the room and talk to somebody, which helps, makes a difference, yeah.

OK so you wouldn’t shy away then?

No, but it was always... I was always aware I had to as well though.

Sorry?

I was always aware I had to do that if I…

OK yeah.

…if I wanted to... you know, do what some of my other friends did easily, I had to push a little bit harder.

OK is that a common thread with other aspects of your life, would you say, or is that something peculiar to dating, more pertinent to dating?

Well the dating and the making friends and the fitting into new schools.

Yeah.

But that... a lot of that changed in the university, changed dramatically. It probably changed in the last year or two of high school really: kids begin to mature a bit and it’s... they’re more interested in who you are as an individual rather than the initial sort of physical, “He looks a little different.”

So a little bit less superficial or?

A little bit less, yeah, I think: I hope, I hope so, yeah hmm.

OK so things changed quite dramatically then at that, would you say?

Things really changed dramatically, I remember it changing when I moved jurisdiction right across the country when I was, what, 17, into a new school, 16 or 17. And... suddenly it was all fine. ...Got along good, I had a good circle of friends, yeah, it was not a problem, and then off to university and then, you know, university was ...an eye opening experience, so yeah.

Elliott says he has struggled in the past with relationships with girls but is now more confident in himself.

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Age at interview: 20

Sex: Male

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I’d say I’ve always had like... average amount of friends and just always gone out socially. I wouldn’t really say it’s played any impact at all. …Yeah just socially my life’s been fine: sort of always gone out with friends and had a laugh. It hasn’t really played... any impact at all.

I think I became sort of, from when you become a teenager to sort of the age I’ve reached now, you become sort of very self-conscious... and I just feel that maybe other people shouldn’t let that try and... just because you have a cleft lip and palate, you should try not to feel... I don’t know, I definitely felt a bit... self-conscious in those ages because of the way I looked. I think there’s a lot of peer pressure and

Did you feel comfortable with girls, has that been?

See that’s something I struggled with as well, I’d say. It’s like your whole image to like the opposite sex or... whatever and... just your whole, the whole social thing was a bit... I think everyone becomes a bit obsessed with their image and I just, yeah, I’d try not to let that bother you too much, would be some advice I guess. I mean as I got to sort of 17-18, the confidence I sort of grew from college, it didn’t bother me as much at all.

But... there’s something I feel about it can be difficult. I think it’s a difficult age. ...But, yeah, I found, I sort of found it difficult with relationships as well I guess. But... especially now like 19-20 I’ve... become a lot more relaxed with it and feel a lot more... comfortable about myself... and with the way I look and relationships and stuff so... a lot happier now.

So were there issues in the past at all?

...Only really self-confidence issues, I’d say.

Yeah.

I don’t feel there was anything... else wrong at all. I think it was just the way I made myself feel.

So it was more within you than anything.

Yeah.