00:00 I was born with Main Ear Syndrome.
00:02 My condition is super rare.
00:05 As far as I know, there are only 93 known cancers
00:09 in the world.
00:10 I was in and out of the hospital as a child.
00:14 People don't expect me to be an advancer
00:17 because of my condition.
00:19 I love to prove people wrong.
00:22 There are times where me and Matt are out
00:24 trick-or-ghosting.
00:26 - I don't like you.
00:27 At all.
00:29 (rain falling)
00:32 (rain falling)
00:34 (rain falling)
00:37 (rain falling)
00:40 - I just haven't found the right studio
00:42 that I felt comfortable in.
00:44 So I was scrolling on TikTok one day
00:47 and I saw Rick.
00:48 And this bloke, like everything about him,
00:51 his environment, his attitude,
00:54 the way he runs his class, it's just amazing.
00:57 I've been doing it for, going on three months now
01:02 and I haven't stopped.
01:03 I've been dancing constantly, everything I studied.
01:08 I was very nervous putting myself out there.
01:11 I didn't know how people were gonna react to me physically.
01:15 They were like, "Well, she can't do this.
01:17 She can't do that."
01:19 - Hips and throw, head, head, cross, cross,
01:22 open, open, scoop.
01:24 It does take a certain amount of courage
01:26 to show up for any dance class,
01:28 to risk making mistakes,
01:31 and to stand in front of a room and say,
01:32 "Here I am just trying as best as I can."
01:35 Ashley's body's built differently,
01:37 so she's obviously gonna have a different sense of balance.
01:40 Knee, turn.
01:41 But as she gains balance and gains her own footing,
01:45 she's able to make the moves more of her own
01:48 every single time that she executes.
01:50 Sweet, hell yeah.
01:51 Got it.
01:53 - Major syndrome is a cranial facial inflammatory
02:07 in the face, arms, and hands,
02:09 and there's only four in a hundred cases in the world.
02:14 My arms are short,
02:16 so there are things I cannot do for myself.
02:19 I had to learn from figuring out ways
02:24 to make it work for myself.
02:30 So, like, every single time,
02:31 I would have to stay at another school.
02:34 I just had to learn by thinking outside the box
02:37 on how to adapt to the outside world.
02:40 When I was born, I didn't really have a jaw,
02:46 so I had to take bone from different parts
02:50 of my, mainly my head,
02:53 and make implants and rip it off,
02:56 and then just extract it to make it more outward.
03:01 And then I had surgery on my cheeks
03:03 'cause I didn't have any cheeks, nose,
03:07 so I had to implant those,
03:09 and I had other facial surgeries,
03:11 other stomach surgeries,
03:12 and then I had surgeries on my hands
03:15 where they took both of my index fingers
03:19 and they rotated them into my thumbs.
03:23 It was challenging because I was the only one
03:27 who had major syndrome.
03:29 So, a lot of friends and family from school
03:33 would make fun.
03:35 They would call me names like T-Rex,
03:38 and then really, really sad.
03:42 Like, I was crying every night.
03:45 I just had a hard time,
03:48 but I didn't let it affect my schooling.
03:51 Growing up in the inner world was a little bit tricky.
03:54 There were a lot of times
03:56 where people wouldn't really give me the chance
03:59 to, like, get to know me or get to know them,
04:02 and it just kinda hurt
04:04 because it felt like they were
04:07 judging me for how I looked
04:09 rather than trying to get to know who I am as a person.
04:13 So, that was a little tough.
04:16 Matt!
04:17 - What's going on?
04:18 - My roots.
04:19 - Oh, worried for your hair now?
04:20 - Yeah. - Okay.
04:22 - Me and Matt met online 14 years ago.
04:26 We were best friends for a very long time,
04:30 and then in 2019,
04:33 we officially met in person for the first time,
04:36 and then we've been dating ever since.
04:39 - Thank you.
04:40 - Beautiful.
04:41 - Thank you.
04:42 - He didn't really treat me like I was different.
04:46 He treated me like a human being
04:49 who would treat someone else,
04:51 and that's what really got me attracted to Matt
04:55 because he was so different
04:57 from the other boyfriends I had.
04:59 He literally picked me as a whole person.
05:03 He'll help me with all kinds of stuff, really.
05:07 I mean, he'll help me with everything if he can.
05:09 - I help Ashley with her hair,
05:11 putting on her top if she needs help with her top.
05:14 Just basic things that would require extension and height.
05:19 - Sometimes, like, in more physical aspects of it,
05:23 it's so bad for having to ask him to help me all the time.
05:29 But he doesn't seem to mind it,
05:31 so it makes me feel better
05:33 that I have someone like him to look at and take care of
05:38 if I have to have help.
05:39 - Everybody needs help in life.
05:41 - Yes, sir.
05:42 I feel amazing to know that I have a significant other
05:47 who supports me in what I wanna do,
05:51 and I support him,
05:53 so we're like partner and tribe,
05:56 if you wanna call it that.
05:58 Matt is my life.
06:01 He's everything.
06:04 - You want crushed ice or ice?
06:08 - Crushed.
06:09 - Crushed ice it is.
06:11 Got the big old fancy pours.
06:17 (laughs)
06:18 - Yeah.
06:19 - Saloon.
06:20 - Saloon.
06:20 There are times where, like,
06:24 me and Matt are out doing something
06:26 or I'm doing something when I say,
06:28 "Yeah, take me to the store."
06:31 - It gets me really frustrated.
06:33 There's definitely times that she has to hold me back,
06:37 because if we're at a grocery store
06:40 and someone is just looking at her for no reason,
06:43 trying to judge her,
06:45 I just ask if they got a staring problem,
06:47 or do we need to go have a talk somewhere?
06:50 So I don't like it, at all.
06:54 Comment or anything like that,
06:56 especially on social media,
06:59 where people would make inappropriate comments,
07:03 and I don't really let it get to me.
07:06 Like, I don't, I don't move into that type of environment,
07:11 so I just kind of shrug it off and let it go.
07:14 People with physical disabilities can also do things,
07:23 even if it's, like, acting a different way
07:26 to make the dance room happen.
07:29 I feel like I'm on a pole line when I'm dancing.
07:33 I don't feel nothing.
07:34 I just feel freedom.
07:36 I feel the music.
07:38 I don't feel nothing but music when dancing.
07:41 - I love when Ashley posts her dance routines
07:44 on social media.
07:45 I know she gets an outstanding response every single time,
07:48 but what I love most about it
07:50 is that she's continuing to take away excuses,
07:54 where other people come up with syndromes for themselves
07:57 and say, "I have two left feet.
07:59 "I can't dance."
08:00 Ashley's standing up here with Negger syndrome
08:03 and is doing it.
08:04 She's executing the moves,
08:06 despite what limitations her body might give her,
08:09 and by doing that, she's inspiring other people
08:12 that are just like her,
08:13 other people that have bodies that are different than her,
08:16 and people that might be self-conscious
08:18 to show up for their first class.
08:20 (gentle music)
08:23 - Like, I'm an animated to do that,
08:25 to show people, "Hey, this girl can really,
08:28 "and she's got Negger syndrome.
08:30 "If she can do it, I can do it."
08:33 And that's the main reason why.
08:36 I do like the fact that I was born different
08:39 just because it's brought out so much confidence in me,
08:44 I guess you could say,
08:46 and now it's just like a complete re-fix me.
08:51 I feel really unique when I know
08:54 that there's less than 100 people that have my condition,
08:58 but that just means that we're special,
09:00 that we're one in a kind,
09:02 and I kinda like that.
09:04 (gentle music)
09:07 (gentle music)
09:09 (gentle music)
09:12 (gentle music)
09:15 (gentle music)
09:17 (gentle music)
09:20 [BLANK_AUDIO]
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