ASHLEY is 23 years old with Treacher Collins Syndrome, a condition from birth that affects the bones and tissue in the face which meant that Ashley was born with no cheekbones and no ears. “I’ve dealt with this for 23 years, I get the stares, the looks”. “And I am who I am, if you don’t like it - tough!”. Ashley’s father Michael recalls how rare and unprepared doctors were when Ashley was born: “Not a lot of people knew about Treacher Collins Syndrome because it affects 1 in 10,000 people.” Ashley has had over 30 surgeries including a jaw distraction, which involves breaking the jaw on a daily basis in order to bring it forward. Ashley has been bullied throughout his school years because of his visible differences. “They would punch me, kick me, pin me up against the wall”. This drastically affected his self-confidence and he now regrets not telling his family sooner. “I didn't go out, I just wanted to be in my safe space”. Through his TikTok account, Ashley has been able to bring awareness about Treacher Collins Syndrome to his growing followers. Although at times he gets hateful comments, this doesn’t stop him from wanting to spread a message of hope and acceptance.
Follow Ashley here:
https://www.instagram.com/ashleycarter102
https://www.tiktok.com/@ashtheebash200
https://www.tiktok.com/@ashbash122
Follow Ashley here:
https://www.instagram.com/ashleycarter102
https://www.tiktok.com/@ashtheebash200
https://www.tiktok.com/@ashbash122
Category
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FunTranscript
00:00 I've dealt with this for 23 years.
00:02 I've had the stares and like,
00:04 I don't like to be the most different
00:05 'cause like we're not different,
00:07 like we're still the same.
00:08 And I am who I am, like, don't like it.
00:11 Tough.
00:11 Tetrachlorus syndrome is a genetic condition.
00:15 I was the only one in my family with the condition.
00:19 I was born without no ears, no cheekbones,
00:21 and a receding jaw.
00:23 I've had over 30 operations.
00:26 I have my jaw broken three times.
00:29 We had to turn the screw,
00:31 so in effect, breaking your jaw every day for two weeks.
00:35 My hair gets so frizzy.
00:39 I can't stand it when it goes messy.
00:42 That is a wig, mate.
00:43 Like, that's not my normal hair.
00:45 I'm Ashley Carter, and I have Tetrachlorus syndrome.
00:49 I was born without no ears, as you can see here.
00:52 I've got both bone antiterorities on both sides.
00:55 The surgeons literally put in a titanium screw,
01:00 and this is where it attaches here.
01:03 Turn it on, and I can hear.
01:07 It's been very difficult
01:08 because I just wanted to fit in with everyone else,
01:12 but I always felt, like, left out.
01:14 It all stemmed from school.
01:16 I knew that I looked different
01:19 to the other children in the school.
01:22 Trying to mix in with other people,
01:24 trying to not get involved.
01:25 I had urinalium, urogyny.
01:29 It would happen on a daily basis.
01:31 I would sit and eat my lunch,
01:32 and I would get food chucked at me.
01:34 They would punch me, kick me.
01:36 They would pin me up against the wall,
01:38 and I just said to my mum that I cannot do it anymore.
01:42 I didn't want to go out
01:43 because I was worried about,
01:45 "What if this happens?
01:46 What if that happens?"
01:48 I just wanted to be at home all the time.
01:50 I lost my confidence.
01:52 The lack of interest in things.
01:54 I just wanted to be at home in my safe place.
01:58 I will never, ever forget the people
02:00 that made my life hell growing up.
02:02 I started posting about a couple years ago,
02:10 and it's all about raising awareness about my condition.
02:13 I'm going to be sharing some of my stories.
02:16 Just because we're born different,
02:18 we're still the same people as everyone else.
02:21 It means so much to me that I've got my support out there.
02:24 Some of the lovely comments I've had,
02:26 and you all have been really lovely,
02:29 and it's actually helped me climb a lot.
02:31 I have received negative comments online.
02:33 "Can people not comment or judge my videos by the way I look?"
02:38 "Looks like you've been putting it in the oven."
02:40 "Looks like the sun has melted you."
02:42 Seeing the comments, it got me down.
02:45 I'm not going to say it hasn't.
02:46 I don't think it would to anyone.
02:48 What I tend to do is I just delete the comments
02:50 because I don't want my family, my friends to see it.
02:54 This is Bradley here.
02:57 Even with normal shoes on, he still over-tallies me.
03:01 I think my brother noticed it more when I would come home.
03:05 Quiet, upset.
03:07 Hello.
03:10 - How are you? - Come in.
03:11 - Alright? - Yeah, I'm alright.
03:13 Do you want a coffee?
03:15 Go on.
03:16 I'll get you a coffee.
03:17 Bradley can be very protective when he realises that I've been picked on.
03:22 Straighten your hair, it'll take about an hour.
03:26 No, it does not.
03:28 Get out of the shower, straighten your hair.
03:30 - Don't talk stupid. - Blow dry it, whatever you want to do.
03:32 - Brush it. - Don't talk stupid.
03:34 Why are you sat in a shoe?
03:36 Because I wanted to, alright?
03:37 I did see from an outside point of view all the bullying.
03:41 It angered me a lot.
03:42 I just wanted to be there for Ash.
03:45 But obviously being five years younger, it's kind of hard.
03:47 Just that thought, I look so chubby.
03:49 Brr.
03:52 I just want people to be treated the way that they want to be treated.
03:56 Yeah, me too.
03:57 So when I go out, even if it's to the shops,
04:03 even if it's to the pub, even when I'm in the car,
04:06 I get the notes.
04:08 I get the stories.
04:10 And I sometimes do get the comments.
04:12 And I just want people to understand that
04:15 just because I look different and I have a facial difference,
04:19 I'm actually a genuine nice guy.
04:21 Lovely to see you.
04:26 Dad has been very supportive.
04:28 When we found out that Ashley had Treacher Collins syndrome,
04:33 we were shocked.
04:34 But you were really, really cute.
04:37 - Cute? - Yeah, cutie.
04:41 Not a lot of people knew about Treacher Collins syndrome
04:47 because it's a syndrome that is just one in 10,000 people.
04:51 So he was a bit of a guinea pig.
04:53 Obviously, you were very young.
04:55 So we had to turn the screw on this frame that was inside your jaw.
05:01 And we had to do that every day.
05:03 Due to having such narrow airway, I couldn't breathe.
05:07 I turned blue.
05:08 And they gave you an external frame.
05:10 So that brought your jaw forward by two centimetres.
05:15 And then that opened your airway up.
05:19 And then they could take your tracheostomy out.
05:24 Yeah.
05:26 Which was deep breath time.
05:29 You'd never breathed unaided, really.
05:32 I didn't breathe on my own.
05:34 You were breathing on your own.
05:36 It was quite scary, actually.
05:38 Because you had to have stents put in your eyes
05:41 because you didn't have any tear ducts.
05:43 Morsel stents.
05:44 It's a little tube that you put into the eye
05:48 to make a little channel so that you can make a tear duct.
05:52 Sleep, you could only lie on your back.
05:55 Was that the most recent one?
05:57 That was the most recent one.
05:58 Yeah.
05:59 I remember that.
06:00 I was in a coffin.
06:01 You were like that, yeah.
06:03 I was a female, and I had to sleep like that.
06:07 We were about a week away from actually taking you to London
06:11 for prosthetic ears.
06:14 They can literally make ears.
06:16 I haven't had ears for 23 years.
06:18 I could have a chin implant if I wanted,
06:21 but I'm not going to.
06:23 You said, if people can't accept me for what I am
06:27 and the way I look, then they're the ones with the problem.
06:31 And that's the way it's been for practically
06:35 the whole of your life.
06:36 There were some really horrible operations
06:38 that you had to go through.
06:39 And we didn't know what was going to happen.
06:47 With me being picked and growing up,
06:49 I do wish I'd told my dad earlier.
06:51 I wish I'd told my mum earlier, because maybe things
06:56 might have got sorted quickly.
06:57 But Ashley kept a lot of it very quiet.
07:01 He used to come home, go straight to your bedroom,
07:03 thinking, oh, he's up there doing his homework.
07:06 I was in that state of mind, thinking,
07:08 if I tell anyone, is it going to get worse?
07:10 Is the bullying going to get worse for me?
07:12 To know that he was hiding things like that from us
07:16 and all we wanted to do was to make it right.
07:21 Throughout your life, you've been so brave.
07:26 I'm very proud.
07:27 I'm very proud of him.
07:28 He is just a good role model.
07:31 And generally, people love him.
07:35 I've had my good moments, but I've had my bad moments.
07:38 We are who we are.
07:39 We are living the life that we want.
07:42 I think from now onwards, life is looking up.
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