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Jon

Age at interview: 38
Brief Outline: Jon was born with a cleft lip and palate. He is a graduate and currently works as a freelance producer of arts and events. Jon is also involved with the CLAPA Adult Voices network for adults born with cleft.
Background: Jon is a graduate and works as a freelance arts and events producer. He is single and White British.

More about me...

Jon is a graduate and currently works freelance as an arts and event producer. Jon was born with a cleft lip and palate and is a single child. When he was born his mother the Cleft Lip and Palate Association (CLAPA) was in its infancy. Jon did experience some teasing as a boy in primary school and this persisted at the boarding school for boys where he completed his secondary education. Jon has undergone extensive surgery throughout his infancy, teenage years, and up until he was 20 years of age. As a young adult Jon also considered further surgery for jaw alignment but opted not to go ahead as he did not want to go through the post-op recovery at a time when he was enjoying his independent life. 

Jon was academic at school and progressed to higher education. Subsequently, Jon has worked in engineering within the oil industry and has been involved in a number of business ventures before he began producing arts events on a freelance basis. Jon finds working within the arts world a relatively more accepting place, particularly if you have a visible difference such as a cleft. 

Although Jon has achieved well in education and business, and has lived in many different locations, he sometimes wonders if and how his life would be different if he did not have a visible cleft. In particular, as a single male, Jon is aware that having a cleft may hinder romantic relationships, particularly in the age of on-line dating. As an adult Jon has identified more with his cleft and is aware from his own and others experience that there is a gap in emotional and psychological support available for adults born with a cleft lip and / or palate. Thus Jon became involved with the Adult Voices group - a forum in which adults born with cleft can share their experiences and support others in living with the condition, as well as providing feedback to CLAPA.
 
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Jon believes that he would he would have been teased as a teenager whether he was born with a cleft or not and does not think the teasing has had a big impact on his wellbeing.

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I guess 13 onwards, I think really, you know, a bit of teasing about the way you look... from... other, you know, from other kids. I remember not being able to play rugby because, just through kind of... it was considered to be risky, risk of injury I guess. So that kind of... it was quite a sporty school, so I guess that kind of instance, sort of difference but I took up other stuff instead. But yeah mainly, mainly it was just kind of... you know, teasing and sort of... snide comments, I guess. But actually there was always a level of bullying which I think actually quite a lot of which wasn’t related to having a cleft; a lot of it was just... it happened to everyone as well. 

OK yeah.

So I guess one has, you know, one has to pick apart the stuff that was cleft related and the stuff that was just teenage boys being nasty to each other [laughs].

Yeah so it’s difficult to sometimes separate it?

I reckon there was probably of the latter than the former actually.

OK hmm.

I think the kind of cleft, as I say, might occasionally have been a catalyst, might have set you apart. But I kind of quite liked being slightly different, I think: didn’t mind it, didn’t mind it so much.

You didn’t mind doing the different activities, did you say?

No I didn’t mind just being a bit, you know, just being a bit different.

You didn’t mind being different in yourself?

Yeah it just suited my personality probably, so it wasn’t a big deal for me.

So would you say it helped shape your identity a little bit?

Kind of hard to know. ...Yes, I mean yes, I mean all... in the sense that all... all experiences shape your identity, whatever, whatever they are, I think unavoidably, yes.
 
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Jon considered further cleft treatment as an adult but decided that there would be no significant benefit at this stage of his life.

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I guess kind of the way I looked perhaps... came back to consideration every so often, I guess. And I, perhaps in my late 20s, I’m just trying to think, yeah very late 20s thought about having the bone, the jaw... alignment, or possibly just having the nose moved without the jaw alignment. And I went to see a consultant at that point who... I had a where they put sort of dye down the back of your throat and look at your speech, your soft palate and how that works during speech.

Oh yeah I’ve heard of that yeah, yeah.

I know there’s a scientific name for it, which I can’t remember something-oscopy, nasoscopy, something-oscopy. Anyway they… the guy I saw, who was very good, kind of felt that it wasn’t totally cut and dried whether moving the jaw would affect my speech. I felt that actually speech perhaps trumped looks [laughs]... or, you know, in terms of priorities.

OK yeah.

He also felt that without realigning the jaw and just trying to do my nose, that it was a bit like sort of... painting over a badly repaired wall, [laughs] if that’s the right metaphor i.e. he felt that to move the nose and do that work properly you needed the foundation of moving the jaw. So following through the logic of that, it was something which I kind of felt it was all or nothing, and I decided again... what I’d decided ten years earlier, which was to leave it and haven’t really thought about going back to do anything since, and probably won’t I imagine now, now I’m 38. I don’t strongly feel the need to go through tons of surgery right now.
 
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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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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.
 
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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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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.
 
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Jon had had trained as an engineer and was interested in joining the Air Force but was prohibited because he had a cleft. He became an engineer in the oil industry but was not aware of any discrimination in this role. Jon now promotes arts events.

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I don’t really think I ever did. I mean I think... oh I... there were a couple of early pre-experiences about, they were in relation to cleft, one of which, which were both quite different, one of which was at university. I thought about... for some reason I got it in my head to go and join the Air Force.

OK.

That was my first idea. You know what it’s like, well everyone’s different, but when you’re in your late teens/early 20s, you know, you have ideas of doing all sorts of things and you see what sticks really. And I went to ... a selection process for that, and was told at the end of it that I couldn’t join it because I had a cleft because you can’t be a pilot in the Air Force with a cleft.

And what was the rationale behind that?

The rationale at the time I think was that they... I got the impression the rationale was there had been instances in the past of people having pressure related issues for flight, which I think some people with clefts do have more issues with equalising pressure.

Yeah.

And I think they therefore applied a more blanket approach because that’s what, that was the kind of most straightforward way of dealing with it through the selection process.

Yeah sure.

So that was a quite practical specific cleft related experience. And the other one was actually again pre-engineering I set up a business with a friend, and we had some investors, we were probably early 20s, 21 I think, and we had an investor looking to put money into the business who, by all accounts, said to my colleague, you know, “I find it difficult to invest in a business where there’s someone who looks like that.”

Right hmm.

Which, you know, was quite... quite specific [laughs] kind of reaction.

Was that said in your presence?

No it was said to my colleague out of my presence.

Right but…

It was very divisive, but he actually did still invest [laughs].

He did?

Yes... so... those were the kind of two experiences pre-kind of engineering. Through my four or five years as an engineer I never, to my knowledge... it was never an issue. No one ever mentioned it. And when I had to do practical like to go offshore, you had to do offshore survival training being ducked upside down in helicopters in water and stuff like that.

Where was this? Oh for the oil rigs?

Yeah the off- you had to do offshore survival training to go offshore. And I wondered whether a cleft might be an issue with kind of pressure issues with that, being shoved under water and all that training. But it was never an issue. No I mean through, certainly through... work, from there on I... of course you don’t know how things would have turned out if one hadn’t had a cleft and whether people are what’s the word? you know, discriminatory. But they were never... I never experienced any open discrimination in 15 years of work really since that point.

I would assume that’s quite a male dominated environment, would that be fair?

Oil industry, yes definitely, yeah, quite, quite male, quite, quite macho: not really me [laughs]. You know, offshore is quite ex-military; onshore quite... people have come up through the trades. And I, I think, was at a disadvantage because I hadn’t come up through trades; I’d come up through university.

OK.

And I think actually that gave me a practical disadvantage. And it wasn’t a job that I was particularly well suited to; it wasn’t a job that I was particularly interested in. None of that has to do with the cleft, it was just... that was just a fact. It paid quite well for four or five years, so I stuck with it and then decided to go and work in the arts. And certainly in the arts, you know, I think it does self-select quite kind of open-minded, liberal people. And therefore of all the career choices, if you’re a little bit different, or you are a bit different, the arts is probably [laughs] quite well suited to you.

So your experiences in the arts, what have they been like?

Similar, I mean, you know, I’ve tried to forge a career. It’s quite, again no, nothing detrimentally... nothing detrimental related to having a cleft. I mean it’s, I’m freelance; it’s a career that’s quite life consuming.
 
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Jon was involved in starting up the Adult Voices network for adults born with clefts.

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I sort of thought it would be quite nice to... sort of help out [laughs] I guess. It was really nothing to do with my... you know, it was just something I thought that would be a nice thing to do. They were ... at the time in a magazine or somewhere had a wee article, ad saying, you know, they were setting up Adult Voices, which was... a group of adults with clefts.

So this is at the set up of Adult Voices?

Yeah I kind of represent adults with clefts to CLAPA, and I think that had previously come out of perhaps a conference where it had been acknowledged that a lot of CLAPA services were directed towards children and parents. And actually children stopped being children at 18 and are adults for three times as long, that there was kind of quite a sizeable demographic of people who weren’t being represented by CLAPA. If you do the maths, if one in 500 people are born with cleft, that’s something like 100,000 people in the UK, quite a lot of people.

It’s a sizeable population isn’t it, yeah?

So... they invited a bunch of people to come along and just have a kind of brainstorm and I went along to that. And... a bunch of us agreed that we would move forward and set up Adult Voices because I’m... quite, well because I’m vaguely organised and I sort of during that initial session kind of pulled together the kind of... the chat and just some kind of structure.

OK.

I guess I got... when someone said, “Who wants to be chair of it?” everyone pointed at me [laughs].

OK are you the first selected chair then?

Yeah so I’ve been doing that ever since. I’m planning to hand over to someone else at the end of this year. I’ve done a few voluntary/charity stuff things, mostly not cleft related, over the last ten years, and I’ve chaired a couple of things, a couple of boards of trustees for charities and things. And I’ve always taken the view that three years is quite a good period to do something: it’s long enough to make a difference but not so long that you get bored and fed up [laughs].

Are you looking forward to handing the role over or?

Yeah.

Yeah.

Yeah and I’m kind of... what I’d like to do is just kind of get more involved with adult... contact, which is something that I’ve put a funding application in to CLAPA for, which is to set up a kind of regional network of people who are... who other adults with clefts who want to talk to someone with a cleft can contact.

Oh I see, yeah, so like a buddy system?

Exactly.

Yeah oh that sounds…

Which is something that struck me as necessary. And we started, we started the Adult Voices, not, perhaps not really knowing what... we were there to do [laughs].

Yeah sure, yeah.

And at the time kind of realised that there were particular things that are quite useful and particular things that we thought might be useful that really aren’t. And... having set up really simple things like a Facebook site for adults with clefts, which has now got hundreds and hundreds of members, it became quite apparent that people with clefts, not everybody but some people should get support from other people with clefts. But some people I’ve had direct contact from others. But it kind of came to my attention that anyone who is being named as a potential contact needs a bit of training around what is appropriate, I think particularly down the more emotional, psychological support, which is what, I think, what we acknowledged that a lot of adults perhaps need, adults with clefts, or if not a lot then some. People who have contacted me, some, some contact has been very practical around how to access treatment or…

Yeah sure.

Quite a lot of it, in a way, has been people kind of perhaps with more emotional needs, people at low points where the cleft is perhaps a catalyst for that. And also, as a layperson, albeit a person with a cleft, I think it’s important to have a kind of common agreement across the adult contacts as to how to deal with that, how involved to get, how involved not to get, when to refer people on, that sort of thing.
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