Latest / Unbalanced with Cerys Davage / 81. The reality of life as a disabled model (ft. Emma Lines)

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81. The reality of life as a disabled model (ft. Emma Lines) · Unbalanced with Cerys Davage

0:10
Hello everyone, welcome back to another episode of Unbalanced
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with Me, Cara Savage. Today's guest I found an
0:17
Instagram called Emma. Hello.
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Hi. How are you doing?
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Good, good. How are you?
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I'm all good. I'm very excited to chat to you
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because the content that I've seen on your page is absolutely
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incredible and I can't wait to find out a bit more about you.
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But first of all, introduce yourself to us.
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Where are you from and what do you do?
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So I'm Emma Lyons and I'm based in West London and I do a little
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bit of a lot of things now. I guess my main thing is I am a
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model and I a public speaker and I also do some content creating
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just to be a bit creative in between all the other things I
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do. Lovely.
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As I was scrolling through the amazing content in the amazing
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disability community online, I came across your page and I just
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thought you're like, you just seem like such a big burst of
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light. And I was like, I need to get
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this girl on my podcast right now.
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Yeah, when you send me that message, I was like, absolutely,
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yes. Tell us a bit about your
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disability and your journey with it.
1:27
Yeah, so I have Shark Up Marie Tooth and I have type 2 AI was
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actually diagnosed really young. I was I think about 5-6 because
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it's hereditary, but no one in my family actually has it.
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It was just as I was growing well, starting to walk more and
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it was mainly came very, I guess obvious when I was in nursery,
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like my mom had already picked up on it, like I'm the youngest
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of three. But like the nursery teacher was
1:56
like she can't skip like the other kid.
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She can't jump because I had what's it called, like my foot.
2:04
I had foot drop was like floppy fat.
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No, yeah. So it became like quite apparent
2:10
that there was something that I had went to the GP.
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Obviously I don't, I don't remember all of this, but my mom
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went to the GP and they were like, oh, she'll grow out of it.
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And I very much well grew into it.
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So I think in the end my mom ended up getting me sort of
2:28
privately diagnosed through the Podiatry service.
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I think she found out that she could do self referral.
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And then my nursery teacher actually wrote a letter as well
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to support my mum. So yeah.
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And then from there, we didn't really know.
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Like I was the only one in my family to ever have this
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disability. And so growing up it was very
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unknown. And I wore leg splints for
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majority of my childhood, which helped my ankle in sort of like,
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I guess a 90° angle. Is that right?
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Gosh, my maths. Yeah.
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So basically I couldn't bend my ankle when I walked.
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It was very like set. But I wore my splints every
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single day. Just I found it helped me walk a
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lot better. And I remember when I was in the
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hospital, they used to like just have physio appointments.
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They used to bring other people in to talk to me because I would
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always wear my splints and look people wouldn't.
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But for me, I just found I could actually be more independent and
3:34
safe with them. And I think because I started
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from young, such a young age, I think when you have a family of
3:40
disability and you have someone in your life that doesn't like
3:42
wearing their splints, you already have that view of the
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mobility aid where we were like completely fresh.
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Like I was given the splints, so I wore them.
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And then because it came routine and I realised how much I
3:56
tripped less and I could get round a little easier, I
4:00
literally wore my legs up until like I couldn't walk anymore and
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I was like, well, there's no point me wearing these every
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day. So yeah, it's been a journey, I
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have to say, quite a difficult one at times.
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A lot of fighting as well, especially like trying to get
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into mainstream, mainstream schools.
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I guess when I was younger and I was still running around and
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everything. It wasn't as difficult, but
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going into secondary school it became a lot more of a
4:29
challenge. None of it was really adaptive,
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but they didn't know how to deal with someone really with a
4:34
disability. Like it took my science lessons
4:39
3 or 4 years to move downstairs and then when they did, I was
4:43
just like fed up with it all. And I so stop going to all my
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lessons and just went to learning support because I just
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got to a point where I was like, you just don't care.
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And you get people complaining like I'm not in my classroom.
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And it's just like, well, I'm obviously the sole reason, like
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you're not. But I, I actually hid my
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disability at the point I spent a really, really long time
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hiding that part of me because also my hands are affected.
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So I've got limited dexterity. But as much as I could, I had, I
5:15
had my disability up until basically I couldn't anymore.
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So yeah, that's a bit my, I guess my, my past and growing
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up. Wow.
5:24
OK, well thank you for sharing that.
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So honestly and openly, it doesn't sound like a an uncommon
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experience where society doesn't know what to do with a disabled
5:35
person. So you feel like you have to
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hide it just to blend in. And it's frustrating to hear
5:41
because. The.
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Reaction to a disabled person's diagnosis is to just try and
5:47
adapt the environment around you as much as possible.
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And that sounds like it did not happen with you in school.
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And how are you supposed to know what you need?
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You know, you're the one that's trying to get used to it, trying
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to learn your limits with it. Other people should be able to
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help as well. So that's that sounds really
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frustrating. Yeah, and I think as well that
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is like you're, you're exactly right.
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Like especially when my disability progressed like we
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had to try and fight to get adaptations at home.
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But I was also in college at the time and it's quite difficult
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when I get your access needs has have been ignored before.
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And then I'm like, no, I actually do.
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Like I can't struggle upstairs. Like I need it to be moved
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downstairs. But also it is like everyone
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just expects you to be fine with it.
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And I'm like, I'm still like, I'm adapting to this massive
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change that I also thought would never happen in my life.
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Like I don't know what I need from anything right now.
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And you just feel so lost. But people's way of sort of or
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like, I guess reaction to it is sort of like they just
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completely step back and remove themselves rather than actually
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being like, yeah. And they're like, I lost so many
7:00
friends when my disability progressed.
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And I would say even like growing up with a disability, I
7:06
did find things difficult. I couldn't just go and do
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everything that everyone else was doing or it wasn't easy.
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I do feel like friendships were very come and go.
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Like you think you're close to someone and then you're not,
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they disappear. And I think that's been a very
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common occurrence throughout my life.
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And then when my disability progressed, like I literally sat
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in college my first year, it happened sort of like I guess
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when I came back, it was halfway through my first year, I had one
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person that actually sat with me.
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And then my second year they left and I was just like sat
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there on my own. If I didn't have a one to one, I
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would have just been sat in a classroom on my own the whole
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year. Like not being included.
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And also that was a time where I was also getting used to the
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people seeing this side to me that I've been hiding.
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But then the reaction is, well, actually we're just, I guess, in
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a way not going to see you. We're going to like pretend like
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it's not happening. It's so we avoid it and it's not
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happening for us. Yes, it is.
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It is really interesting to see how people do react obviously,
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and that it's coming from a very different part to when it was
8:17
happening. Yeah, and it says a lot more
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about those people in your lives that came and went or that
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didn't stick around. You haven't done anything wrong,
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but it just shows that people maybe aren't equipped to know
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what to do and know how to help. And like you said, it's not like
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you know exactly what other people need to do.
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It's just the case of them being there than being a listening ear
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and wanting to learn, wanting to help, you know?
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Yeah, and I think it does shine a light that it shows how
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disability is not shown in in society.
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Like so when this happens, people are like, whoa, I don't
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know what to do. I don't know how to talk to you
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now. Like even though I knew you
8:58
before, but don't know, like all of a sudden you come in on
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wheels and I I don't know how to talk to you.
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You're not the same person. And like I am the same person.
9:06
I just. Can literally use my legs by
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you. Yeah, yeah.
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It's just like people just don't know how to talk to you.
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And I'm like, I am a person. I'm like you.
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My life is slightly different. Like I passed with that so that
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I can come out like you come out and like get on with my day.
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It just sometimes baffles me so much.
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And I know that a lot of people have very similar experiences
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and I think that's why community is so important as well.
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Like I didn't have Instagram at that time or even it wasn't such
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a big thing when I was at college.
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So I didn't really have that side of things.
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Like I didn't really know anyone else with my disability, I or
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any, any disability necessarily. Like I didn't really have anyone
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to connect with. Like I'm lucky that I had, I do
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have a really supported family. Like my mom has literally like
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given up so much so that I can have the life that I have.
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But I still found it really isolating at the time that I was
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going through it all because I was and I didn't have anyone
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that could relate in exactly what I was going through or not
10:13
necessarily exactly what I was going through.
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But know how it feels to lose your mobility.
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Know how it feels to have to stop doing something because
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I've fallen again so I can't walk there.
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Or, you know, my hands have progressed slightly more so I
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can't. I need help putting something up
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like they're happy to help me, but they don't know how it feels
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to lose that part of you. And that's why I do think it's
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it is beautiful now how there is a community out there and there
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are it is easier to connect with people that are going through
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similar to you. And I do think everyone can
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relate in some kind of way. We've all lost things like
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whether you're disabled or not, like you go through life and
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things don't turn out. I just think non disabled people
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can't see it in the same way. They can't see how actually all
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our lives do connect, but in very different ways.
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I could be speaking to someone with a completely different
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disability to me, but they could be like, Oh yeah, yeah, I could
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relate to you. Like that was really similar to
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this situation I've gone through or this part of my body's
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progressed and yeah, I can really relate to how you felt.
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And I think that's one like really beautiful thing of like
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social media is that you can make connections really easily
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or even if you don't necessarily even want to talk to someone,
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seeing someone go through similar to what you are, I think
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it can be really, really powerful and life changing
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really. Absolutely, there's nothing like
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community and I completely relate to you on that.
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You know, as soon as I found other people with my condition,
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them good or muscular dystrophy, I was like, wow, OK, like this
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condition was supposed to be really rare, but it doesn't feel
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rare anymore because I've met other people across the world
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with it. And, you know, we all share our
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experiences together. And you know, if I'm like, oh,
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guys, like I had a fall today or I had to ask like a random
12:07
stranger to pick me up from the street and I would feel like
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that's such an abnormal like experience.
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But then everyone will chip in like, oh, that literally
12:15
happened to me last week or yeah, no, I completely get that.
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You know, so it just, you just don't feel like abnormal
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anymore. And it's just so nice to
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actually have someone to relate to you in that very specific way
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that they they've been through it themselves.
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Yeah. And I think as well, like it can
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sometimes feel embarrassing, like just putting it out there
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and being really like honest, like it can sometimes feel
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embarrassing. Like sometimes I'm like if I'm
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going out with for a meal with people that I don't really know,
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even if I'm with someone that I do know and I'm asking for them
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to cut my food up, I'm less embarrassed.
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Maybe isn't the right words, but it can feel a bit like because
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people are just like what you doing.
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But then the more that you do it, the more you realise it's OK
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and the more that you see other people do it, it is.
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It's like, Oh yeah, like it's fine.
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Like asking for help isn't a bad thing and it's enough, nothing
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to be ashamed of. In fact, it shows like strength
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and courage. I sometimes still get it where I
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really want to ask someone for help, but I'm like, but then I'm
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also like, what do I have to lose to ask?
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Like most of the time people will be happy to help.
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And like I think that also relates into like everyday life
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is if I go into a shop and I can't find something now, I'll
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just go up to someone and be like, do you have XYZ?
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Instead of being like, well, we could go look over there.
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Then we could go look over there.
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Now I'm just like, you know what?
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I'm just going to go off. And then if they're like, we
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don't sell that, I'll be like, OK, thank you, goodbye.
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Or like, do you know what? But I think there is such AI
13:51
guess like a stigma on asking for help.
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And then when you actually need to ask for help, it's like there
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is that like kind of guilt feeling and that embarrassment
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feeling initially. But then the more that you do
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it, the easier it does get. And it is still challenging.
14:08
Like I still find it really hard and I still have people that I
14:11
will go to if they're around, just like normalising those kind
14:15
of things like asking for help or having someone with me most
14:19
of the time because I need help. Yeah, I'm definitely the same.
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I, I think I have no shame now in asking for help.
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And I'm like, you know, people, people like to help others.
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I think, you know, if you're a stranger on the street, you feel
14:34
good by helping someone else, like helping an old lady cross
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the street, you know, like that stereotypical thing.
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But like, if you do, if someone drops something and they didn't
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realise and you're like, oh, excuse me?
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You drop this. Like, you just automatically
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feel better because you just help their day out.
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Yeah. So I'm trying to view it in that
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way and like trying to flip it over rather than me being like,
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oh, this is so embarrassing. I'm asking for help.
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I'm like, I'm going to make this person feel good by helping me.
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And then they can feel better about themselves, you know?
15:04
But also in like supermarkets, the staff, they're there for
15:08
people to literally ask them what like even if I'm 90% sure
15:13
what something is, I will still ask them like, excuse me, can
15:15
you just, can you just take me to where it is to save so much
15:19
time and energy? Yeah, exactly.
15:22
And also just like you build it up so much in your head and then
15:25
you actually do it, you're like, wow, that wasn't that wasn't
15:27
that bad. Yeah, it's not that.
15:29
It's never that bad. I think, like you said, you
15:32
know, if you don't ask for help very often and then when you
15:34
actually do ask for it, you can build it up so much in your head
15:37
to, you know, to be a massive deal, but it's actually fine.
15:42
You know, like it's not a big deal.
15:44
The world keeps. Going exactly And if you can
15:48
save some energy and some time, then why not like exactly?
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It's self-care in a way, you know, like you're not struggling
15:55
alone, you're asking someone else to help.
15:57
I love that. I remember you said about your
15:59
splints so you use them all the way up until you literally could
16:03
not walk anymore. What was the transition then
16:06
like We straight into using more mobility aids?
16:10
What was that transition like? It was a very, very quick
16:13
transition. So I got ill in the November and
16:16
I pretty much was it up until Christmas.
16:19
Like I had an Abscess and I had to go get it drained.
16:23
And then I literally had dressings changed up until
16:26
Christmas and I didn't go into college at that point.
16:29
I just had that whole time off because I was also really,
16:33
really weak and I thought my strength would come back as I
16:35
got better, but that didn't seem to be the case.
16:41
I literally remember when I was it when I thought this was
16:44
because I was ill at the time, standing at the top of the
16:47
stairs looking down and I was just like, I can't walk down
16:50
these. Like I don't feel strong enough.
16:52
I wouldn't have had spins on at this point because I didn't used
16:54
to wear them around the house when I walk, but I just remember
16:58
like standing at the top of the stairs, just like I don't feel
17:02
safe at all. So then I sat down and I went
17:07
down on my bum and that was the last time I went down the stair
17:11
walk. Well, that was the day before or
17:13
the day before. That was the last time I walked
17:15
up and down the stairs. And then I went to College in
17:21
the January well, when really throughout the time that I did
17:25
go into town that I was like holding on to people like you
17:29
still in comes with someone. But it was just more for like a
17:32
confidence thing where this was like I was so tense walking and
17:37
whoever it like my mom used to say, I can feel your body like
17:40
shaking. I think as well.
17:43
It was a confidence thing as well.
17:44
Like I just completely lost my confidence.
17:47
And I'm like very aware in how my body feels to the point where
17:50
I'm like too aware that sometimes it kind of means that
17:54
I won't just be like, yeah, that's good.
17:56
It like withstanding and things like that.
17:58
I am like, I don't feel safe. I don't feel strong enough.
18:04
Instead of being like, yeah, let's just see what happens.
18:06
Like I think I've got a bit of a fear of falling.
18:08
So that comes into that. So literally by the February, I
18:13
was in a wheelchair and I went from being like, I fell, so I
18:19
didn't walk there. I remember going around my house
18:23
literally like around the edges of the rooms, like literally
18:27
holding on to furniture to get to the other side.
18:31
And that, yeah, I literally went so quickly from I guess walking
18:35
to not pretty much. I guess it kind of happened
18:39
almost overnight in a way, but proclonged it by trying really,
18:44
really hard to still walk. And then I would fall in one
18:48
part of my house and be like, well, OK, I can't walk there.
18:51
But my house was like completely not adapted because before I
18:55
just, I didn't want any adaptations.
18:57
Like I, I was like, I can manage.
18:59
I don't want it. Like my view on it was very
19:01
different to them when I had to have it and realise that these
19:05
things are there to help me where before I was like, I can
19:08
do it all. Like I don't, I don't need help.
19:11
And that's not necessarily a good thing because those things
19:13
would have probably helped me before and made my life easier.
19:16
But it wasn't until I was that point where I'm like, I actually
19:19
can't do it without things to help.
19:21
And so like even getting in and out of my house, I had to be
19:24
taken in and out because we had steps, not loads, but like there
19:29
was like a threshold step and then another step down to the
19:33
downstairs toilet. We had a 2 little steps and I
19:37
literally crawled upstairs in my house and I had to pull myself
19:41
onto my toilet and onto my bed. Our bathroom at the time was we
19:46
had a shower over the bath. So I managed to get in and I was
19:49
literally like holding on to my mom and the wall while she was
19:51
showering me down. And then I fell when I got out
19:54
one time. And so that sort of stopped.
19:57
And then the camp, the council, the lovely council, said
20:02
personal care isn't a priority. Yeah, they didn't even.
20:06
So while I was at college and no one was really talking to me,
20:09
they were like, yeah, just don't shower on top of that.
20:12
And so we had to find our own ways to sort of overcome.
20:16
I had an OT our local hospital that managed to get me a lift
20:23
for the bath so at least I could sit in the bath and be showered.
20:27
Safely and, and still shower. Yeah, it was just mad.
20:31
And then even we, we had to wait well, fight basically for two
20:36
years to get adaptations for our house.
20:39
And it was really interesting. Some of the things that we heard
20:42
during the time like that social care wait for basically they,
20:47
they just think it's for elderly people.
20:50
So the longer they wait, they probably won't have to do the
20:54
work. And I'm like sitting there and
20:56
I'm like 17/18/19 at the point like this point being like,
21:01
well, I'm not going to die anytime soon, So what you're
21:04
going to do? And literally I moved into my
21:06
bedroom when I was 20 and this all started when I could have
21:11
walked from 17. So wow, that's a very long time
21:16
to have to struggle. But I also know that by the
21:19
sounds of it, like 3 years really isn't long, although it
21:22
is a disgusting amount of time. Yeah, it's just not long.
21:26
And I think it is so like heartbreaking, their view, like
21:30
the people that are meant to be there to help you, the money
21:33
that is meant to be there to help you so that you can just
21:37
live the basic standard of life. And I think a lot of people
21:41
don't understand this, that don't need these things.
21:44
It's literally so I can live the basic like life so I can shower,
21:49
you know, my basic human rights. I can get in and out of my
21:51
house. I'm really not asking for much
21:54
like, and these people aren't asking for much.
21:57
And it's just crazy how it's still, even now, it seemed to be
22:01
like, that's OK, and it's not. And it's not until someone's in
22:05
that situation, they're like, oh, no, actually, this isn't OK.
22:08
And it's like, well, yeah, we've been trying to tell you for a
22:10
long time, like things need to change.
22:12
Like, it's not OK. Like, it just feels like the
22:15
attitude of them and us. And it's like, no, we are equal.
22:19
We just need a bit of support. I guess that's getting on
22:22
getting on to a whole other topic.
22:24
Yeah, well, I mean, it sounds like a bit of a familiar story
22:28
with your stubbornness at the beginning to just try and do as
22:32
much as you can without any help and to just try and like push
22:36
on. But it also sounds like, well,
22:38
because of your obviously your instant when you got really
22:41
I'll, it sounds quite unusual just because I know that we both
22:45
have a progressive disability. So usually the symptoms kind of
22:50
come on very slowly over time. But it sounds like yours.
22:54
Well, you literally said it happened overnight.
22:57
So that must have been quite a big shock.
22:59
And like, I don't think I've had those moments where I've looked
23:02
at something and being like, this is the last time I'm going
23:05
to be able to do this or like I'm I know I can't do this
23:08
anymore. I think like I really can't
23:10
pinpoint a time where I couldn't run anymore.
23:13
For example, like I used to go for runs and now I literally
23:17
cannot run. But I can't like, pinpoint the
23:19
time. It's so strange.
23:20
Like there must have been a day where I just couldn't.
23:23
But yeah, that's, yeah, that's so unique in a way.
23:27
I can kind of relate to you and that like from before, like when
23:31
I couldn't really run that I remember I'm in sports day at
23:33
like primary school and I did kind of run in my own like way.
23:36
But then as I got older, I couldn't like, yeah.
23:39
So I completely like get that. Yeah, like it is.
23:43
I got told I would always be able to walk and then all of a
23:46
sudden like virtually overnight. It was so weird.
23:48
Like no one really knows like why but there's just not really
23:52
that support out there. Like I eventually got rehab
23:54
therapy like 2 years after I, I was 20 at the time.
24:00
I was literally, I just got to a point where I was just so done.
24:04
Like I was so done. I was still being showered by my
24:08
mom. Like I think I had just moved
24:10
into my new room, but life just felt so stuck.
24:15
And I think when you've been waiting for so long for
24:17
something and then it happens, like it feels great that I'm not
24:20
going up the stairs on my bum like in crawling, but I'm still
24:23
like in the same. You're just kind of left like we
24:27
were just given this adapted wet room and you're left where like
24:31
you're in the, I guess routine of my mum helping me to shower
24:35
like that is really hard to then learn how to shower again and
24:40
break those routines. I just remember I went for my
24:44
like annual appointment and we were talking.
24:48
They were like, we'll give you like one of the there's a,
24:51
there's a nurse in the unit there that gave me a call and
24:53
error missing on this call. I've spoken to my consultant
24:56
about a hand surgeon as I spoke to someone with the same
25:00
condition as me, but she was from America and she said out
25:04
there they do a lot of hand surgeries and surgeries to
25:07
improve your hand function and also Linux.
25:10
But for me right now, like my hands were the biggest thing
25:14
that I would want. Like even now, if I could get
25:17
more function in my hands, that'd be great.
25:18
Should do everything with your hands.
25:20
I was just all like there, I don't know, hand surgeon, blah,
25:24
blah. And I just got to this point,
25:26
this phone call and I was just like, if you're not going to do
25:28
anything, I genuinely like, I just don't know how much longer
25:31
I can do this. Like I wasn't obviously not
25:33
saying it quite as casually as I am now, but I was like in tears.
25:36
I was just like, I'm 20 and like what is my life like?
25:40
I just feel like I've been left like I mean told that you just
25:43
don't have a contact for a hand surgeon.
25:48
Like I just feel like you're not taking me seriously and I want
25:51
to have a life and I just feel like I'm stuck and you're not
25:55
helping me in any way to progress it Like rehab.
26:00
You say that you try and you're not.
26:01
And like, I just felt really like I had nowhere to go.
26:06
Like I felt really stuck. And I was sort of 20 and
26:09
everyone else that I knew around me, like I guess at college, but
26:13
I didn't really have much contact with them.
26:15
But looking at all these people getting on with their lives,
26:17
going to uni or doing all this stuff and I'm just there.
26:21
Like I'm can barely do anything and no one's, you know, you're
26:26
meant to be there to help me and you're not.
26:28
And, and I know that a lot of people can relate to that.
26:31
And I was just in tears. What really annoys me is I had
26:34
to get to that point to get appointments.
26:36
So then the next day I got a phone call from the rehab unit.
26:39
This was I think June time. By the December, an appointment
26:43
with my hand surgeon. Then literally I met my hand
26:46
surgeon in that December. He saw me, I think, as a young
26:51
woman who wants to have a life and go on.
26:56
And he was just, he sat down with me and he said, I don't
26:59
know what I can do for you, but if surgery isn't the way to go,
27:04
I will help you no matter what. He was the first person to ask
27:07
me about my periods, how I get on with them.
27:10
And I was like, yeah, it's, that's the whole story.
27:12
I was like, yeah, that's, that's, that's not great.
27:15
But do you know what I mean? Like to actually be seen as a
27:17
young woman and all these other things that you go through.
27:21
And I was like, wow, you've seen me.
27:23
And he, I knew from that point that I could trust him as well.
27:27
And that's, I feel rare sometimes.
27:29
I mean, I do have people that I can trust.
27:30
But when you go in somewhere new and they are actually so keen to
27:34
be like, I'm going to help, you know, matter what, especially
27:37
when it comes to surgery. I knew that whatever he was
27:40
going to do, he would never do anything that would make me
27:43
worse off or put me like back. Thanks for filling us in on, you
27:48
know, your very up and down roller coaster ride journey of
27:53
getting these operations and finally finding someone that
27:56
actually understands you and that sees you for you.
27:59
Obviously I do want to get into talking about your modelling
28:03
career and the work that you've done online.
28:07
Tell us a bit about how you got into modelling and how important
28:11
it is to be a disabled model. Yeah, so I never planned, never
28:17
planned it, never thought it was even a option or a career that I
28:21
could go down. I mean, I guess up until I was
28:24
in it, I didn't. I was very lost.
28:26
Again, I had a job, lost it in not a very nice way.
28:31
So I was never really ambitious, but I just got sent an article
28:35
actually from my auntie about the agency at the time, which
28:39
was an up and coming inclusive agency.
28:43
And she was just like, oh, have a look at this, think you would
28:46
be really good. And that was well, a few months
28:48
later, I think I actually was like, well, I might actually
28:51
just have a look. And their books were shot, but
28:55
they were like follow us on social media.
28:57
So I followed them on social media and then about a couple of
29:00
months after that, that books opened and I was like, I would
29:03
just be so silly if I don't just send in a few photos.
29:07
So I sent in some photos and a bio.
29:10
And actually this was while loads of things were happening.
29:13
So this was the year that I went into rehab as well and moving to
29:18
my new room all around the same time actually.
29:21
And yeah, yeah, big year. And so I remember it because it
29:27
was also the year that I lost my job as well and got got the job
29:30
and lost it. So basically when you apply it,
29:32
they say that you're here within three weeks.
29:35
If you haven't heard by this date, you haven't been
29:38
successful. This time it was a literally, I
29:39
remember it, it was the last day and I was like to my mum or I
29:43
haven't heard anything. And we were on our way somewhere
29:46
And I got there and I got the e-mail and I was like, and they
29:50
said we would love you to go get some head shots.
29:53
And so they gave two dates, one in, one up in Manchester, one in
29:56
London. The one in London was literally
29:59
the day after I got back from holiday, but the day before I
30:01
went into rehab. So it was just sort of like that
30:06
very lucky how those dates sort of align that I could, I could
30:11
do it. And then within by the
30:13
September, they were like, Oh yeah, we would love you to join
30:17
us. I wasn't really very confident,
30:19
especially in myself. I still wasn't really still, I
30:23
guess learning to love this new life that I had and also still
30:30
adapting and adjusting. So it was sort of like, Oh my
30:33
God, that's amazing. But I was also like, and it was
30:36
quite a difficult time. So after rehab I just got sort
30:39
of dropped again. But I got my first job really
30:41
quickly, which was a commercial. And then for about two years I
30:47
didn't really like, I did a few self tapes here and there,
30:50
nothing really came up. But again, like I wasn't really
30:53
in a great place. And I was also waiting like for
30:57
operations and things like that. And then it got to winter
31:01
lockdown. So we'd had a year of lockdown.
31:04
I had an operation just before we went into the first lockdown,
31:07
gained quite a lot of confidence before lockdown.
31:10
And then lockdown happens and you know, we all like life was
31:14
just wow, very odd for a long time.
31:18
And then recovering from an operation as well.
31:20
By the end of that year, I was just a bit like knocked out.
31:24
But then I, I remember actually having a conversation with my
31:27
brother and he was like, you know, you just seem like you've
31:30
lost yourself. And we had a really great chat
31:32
chat. And then it came around to
31:34
January, the 1st self tape I did, I got the job.
31:37
The second self tape I did, I got the job.
31:40
And that second one was my first like modelling job.
31:44
So the first one was commercial, which is super fun and I love I
31:48
love doing them. But then I did my first like
31:52
modelling job. It was hair hair job who I
31:55
actually met the girl that cuts my hair now, Jen, she still
31:57
comes around. I remember being on that set and
32:01
being like, wow, This is why I want to do this is something I
32:07
can do. And I was just all of a sudden,
32:10
like actually like, wow, I'm excited.
32:12
Like I'm excited for my future. That's crazy that you were
32:15
basically living a double life for a very long time.
32:18
Like modelling, but also like in between operations.
32:21
That's insane. And not everyone could do that.
32:24
So you have to give yourself some credit for pulling that
32:28
off. Like that's insane.
32:30
Congratulations. Honestly, I think like last year
32:35
I was so burnt out. But actually looking back, I've
32:38
been trying to like work quite a lot on like and reflecting
32:41
because I decided my last operation I was like, I think
32:44
I'm done. Like, I think I'm done for a bit
32:46
like, and next week comes up and he's like, I can do this and it
32:49
will be like whatever. I just was like, I don't think
32:52
there's anything more we can do where it will be beneficial to
32:57
go through another operation. And after 4 is a bit like, I
33:01
feel like my body was like we we're just, you know.
33:04
We've had enough. Yeah, we can't do another one
33:07
right now. So, but then realising that
33:11
actually for like those five years, I was always waiting for
33:16
another operation. It is insane.
33:18
Like if I actually look back and then even throughout that, I was
33:21
still like wanting to work and do my Instagram.
33:25
Like if I look back like I literally have toast when I have
33:29
my like splint on my calves on my arm.
33:32
And I am a bit like, you should probably cut yourself a break.
33:34
That's why I bet like chill out. It does take a while to find the
33:40
balance and to learn what your limits are to not burnout.
33:44
I'm very guilty of this. Still trying to figure that out
33:47
myself, but I want to just ask you before we finish the
33:53
episode, I do want to ask you about your social media and the
33:57
work that you've been doing online to raise awareness.
34:00
I think it's so cool to see a disabled woman in her 20s like
34:05
me just absolutely smashing it, looking gorgeous, feeling
34:08
confident. And now we know that it's a very
34:11
long journey that you've been through to get to that point.
34:14
And I just feel like so proud of you for gaining that confidence
34:18
slowly over the years and feeling more comfortable in your
34:22
body and being able to explore fashion and makeup and showing
34:26
off how you do makeup in your specific way with your limited
34:30
dexterity. But it's still possible.
34:31
It's just about adapting. And yeah, I think it's
34:35
brilliant. How important do you think it is
34:37
to see and be that representation online?
34:40
Yeah, I think like I always say this, but I didn't know what
34:44
representation was is when I was proud of it because it was
34:47
never, it was never there when I was growing up.
34:50
So I think seeing the effects that it has and how powerful it
34:56
is from other people's point of view, but also from my point of
35:00
view, I think a lot of people don't realise that.
35:02
Like, so when I did the Primark adapted job, you never know how
35:07
a job's going to turn out. But I actually really, really
35:11
loved the outcome because they did a real that literally
35:15
started off with me going, hey, I'm Emily.
35:18
I have shark up Marie tooth. And when that came out literally
35:23
on Primark's comment section, there was loads of people that
35:28
were like, I've got CMT. I've never seen anyone with CMT.
35:31
There were people literally like I'm crying because I've never
35:35
like, I just thought I was, it was just me.
35:38
And like all of these comments saying like it's so amazing to
35:42
be seen. When I read them, I feel the way
35:45
that they feel when they've just seen me.
35:48
They give me the representation that I guess I give them.
35:52
I think I that really, really made me realise quite how
35:56
powerful it is to be seen. I think because also like I've
36:00
very much just like pushed through it and really stopped
36:03
thinking like, oh, if I saw someone like me, it would be
36:06
easier when when you have that. And even like seeing loads of
36:10
other disabled people in the industry and seeing them and
36:13
being like, Oh yeah, wow. Like watching one of their
36:16
videos and I'm like, yeah, I can really relate to you.
36:19
So I think that drives me even more to what I already have the
36:23
drive to what you were saying to me about how seeing someone
36:28
confident, young and like do my makeup, that's what I want to
36:32
get across to people. Like you can still like do all
36:35
these things and you can look great while you do them.
36:38
Like you can be confident just because you were using a
36:42
mobility aid or you're disabled, like that doesn't matter.
36:45
And even like I was very insecure about my disability,
36:48
like I hid it away for until I couldn't.
36:51
And you know when they say the worst thing, like becomes the
36:54
best thing that ever happens to you?
36:56
Because at the time it felt like the worst thing to ever happen
36:58
to me. But actually it was like the the
37:00
making of me. It was a making of my
37:02
confidence. It was a making of a career.
37:04
It was the making of who I am. And like, I want to use that to
37:09
really help other people so that they don't have to go through
37:11
that drastic train change that I did to get that confidence.
37:16
If I can help other people grow at the same time as me, I think
37:19
that's great. And now I want to, I am trying
37:22
to like use my platform to share more about my journey and be a
37:28
lot more vulnerable and open. Like it has been fashion and
37:31
showing, like being confident and playing with fashion and
37:34
sitting down and normalising fashion, sitting down or doing
37:37
makeup with limited dexterity. But I think I'm now at a point
37:40
where I'm ready to share the other things about my life, the
37:44
journey that I went through, the more personal things and being
37:47
more vulnerable and where and actually how I felt through
37:50
those times. Like I'm really ready to start
37:52
sharing that I the past year have gone through like massive
37:56
ups and downs with my body confidence.
37:58
And I think I've, I've touched that briefly.
38:01
But I think it is also like something I really want to share
38:04
because it's really important to also be like, yeah, I do all
38:06
this modelling, but I've still like dipped so much in
38:09
confidence, like the past year in body confidence.
38:13
But that is OK because it's just an actual thing.
38:16
Like my body changed a bit. I haven't been feeling well,
38:19
like everything fluctuates and you know that everyday person
38:24
like we all fluctuate. Like even if your body stays the
38:27
same, like your state of mind changes, your environment
38:30
changes, you know, things that happen and just sharing that
38:34
part of things as well. I really want to start doing
38:37
because you know, it's not all sunshine and rainbows.
38:41
And I come across really positive online, which I love
38:43
because I am, that is also a part of me.
38:45
But I do also want to share the hardest side and show how I've
38:50
got for it. Definitely, it's good to show
38:53
both sides, to show that you can go through the hard times but
38:56
also still enjoy life at the same time.
38:59
And I completely relate to you on the fact that, you know,
39:02
obviously I'm doing a lot of content creation and through my
39:05
podcast, I'm hoping to be that representation for other people.
39:08
But the fact that other people can relate to what I'm saying
39:12
also really helps me as well. Like I know I'm not the only one
39:15
going through other things. And so it's honestly such a good
39:20
feeling and knowing that we're not alone in this.
39:22
Yeah, because actually I watched your sorry, I was sure you're
39:27
going to the gym vlog yesterday. And I was like, yeah, I really
39:31
relate to that. And but it was also really great
39:33
to see you in a in a gym space. Like I haven't been to the gym
39:38
in a while, but of the gym that I went to, it was like a private
39:42
gym where I saw my personal trainer.
39:44
But showing like you were out in a in a public gym, but you were
39:49
still doing your thing. And like, yeah, it's a cute you.
39:52
You were getting up carefully or getting off carefully, but
39:54
showing, seeing you doing that confidently, it was great.
39:57
And like, I relate to that as well.
39:59
Like how important moving your body is, no matter how you can
40:02
do it. Can relate.
40:04
We can all relate to like different parts, Like we're
40:06
talking about fashion, beauty and all of that stuff.
40:08
But yeah, like, fitness is a massive part of a lot of our
40:11
lives and. Yeah, I really loved your video.
40:14
I just wanted to. Thank you.
40:16
Oh, thank you so much. Yeah, I think definitely it's
40:19
important to show that disabled people belong in those spaces as
40:23
well, in the normal spaces where people without disabilities are
40:27
known for going there and, like, smashing it out and trying to
40:29
build muscle. But even though I can't build
40:31
muscle, like, it's still just as important for me to exercise,
40:34
and it just looks a little bit different.
40:36
And I'm not going to see anyone else doing that.
40:38
So I may as well be the person to show what it's like.
40:42
Yeah, I love that you showed the vulnerable bits as well of like
40:45
you getting off the equipment and gang up and things like
40:49
that. I think they're almost sometimes
40:51
more important than that to be seeing the exercises.
40:55
But yeah, I loved that. I love the way you did your
40:57
video. Thank you.
40:59
It shows that, you know, I do things differently, but I can
41:02
still because still do it at the end of the day, you know?
41:04
Yeah. And I think as well, it's like
41:05
normalising what you can do. And even if that's like you get
41:10
to the gym and you do one thing or at home, like that's still
41:15
like incredible. Like it doesn't have to be this
41:18
perfect like workout that looks polished and you can like easily
41:22
get on and off things. Like whatever you can do is good
41:25
enough and as long as it makes you feel good as well.
41:28
I posted a vlog where I said that I was going to the gym and
41:33
then I actually only ended up doing like one or two exercises
41:37
and then I left because I was so like oversimulated and so tired.
41:41
And that was quite a vulnerable moment for me to share.
41:43
But I think it was important because it just shows that like
41:47
just showing up is enough. You know, even if you don't do
41:50
much and listening to your body is actually better and giving up
41:54
sooner than you thought you would is better because it just
41:58
means that you're not overdoing it and you're actually taking
42:00
care of yourself as. Well, yeah.
42:02
And I think that's really good that you posted that because I
42:05
think a lot of people would be like, I've failed, like I
42:07
haven't done what I did. And like, especially if you
42:10
filmed it, there would be like, well, I'm definitely not posting
42:13
that. Or you would leave the gym in
42:15
such a negative way because you're like, I didn't achieve
42:18
what I went set out to where actually it's like, but you
42:21
still went to the gym. Like that's great.
42:23
And like learning to like flip that mindset, which is it can be
42:27
really, really hard. But learning that actually, you
42:29
know, if you go to the gym and you do 2 exercises, that's still
42:32
amazing. Like there's still something to
42:35
be proud of. For a disabled girl that's, you
42:37
know, that's pretty good I'd say.
42:39
Yeah, yeah. I wish I could keep talking to
42:42
you forever. Like I'm absolutely loving this
42:45
conversation, but unfortunately we have to end the episode at
42:48
some point. So I'd love to ask you a
42:51
question that I ask all my interviewees at the end, which
42:54
is what is one piece of advice that you would give someone else
42:58
who is struggling or your younger self?
43:01
You know, it does get better. It gets easier.
43:03
Everything you're going through will just feed the fire that's
43:07
in your belly to change, change society, change the way that
43:12
things are done and help people. You'll find your way to help
43:17
other people and to growing confidence.
43:20
And I think as well other people that are struggling, I think
43:24
find community I think is really important.
43:26
Reach out or if you don't feel confident to reach out, maybe
43:30
just have a look at their content, see what they're doing.
43:34
I think also groups can be really helpful, like if there's
43:37
a group with people with your condition, but also just I think
43:42
try and focus on what you can do and not what you can't do and
43:48
see the light in that because that could be anything.
43:50
Like, I know that sort of content creation isn't for
43:53
everyone, but there is something like whether it's movement,
43:57
whether it's art, like anything like that, or even if it's just
44:01
getting outside 5 minutes in a day, I think it can be really,
44:05
really hard and times can be really, really dark.
44:07
But if you can reach out to other people, you know, they're
44:10
especially people that are in the disability community that
44:14
can really relate. Like they're usually more than
44:18
happy to like have a chat with you.
44:20
And, and then eventually we'll come friends.
44:22
Like I've met so many friends through this.
44:24
And that was from someone that came from a point where I didn't
44:27
really have many friends. Now I have lots of friends that
44:29
I can reach out to. You know it is worth it and it
44:32
will get better and just fine. Try and find an outlet.
44:36
I think that's really important as well.
44:39
Try and find something you do feel joy in or you know that you
44:42
feel joy in because you might not initially, but the more that
44:46
you do it, the more it will help you.
44:49
You know you deserve to be here and you deserve love and you
44:52
deserve to be seen. And even if it doesn't feel that
44:55
way now, you do. So you know your voice is
44:59
powerful and special and don't silence yourself because you
45:05
feel like there isn't a place for you, because there is.
45:08
I love that. Thank you so much for sharing
45:10
that, and we've both just made a new friend today.
45:13
Yeah, we need to get a coffee one time that we're both
45:17
somewhere near each. In the same place.
45:20
Well, I do come to London quite a bit, so if I am then yeah,
45:25
that would absolutely be amazing.
45:27
I've really enjoyed chatting with you today.
45:30
Thank you so, so much for coming on the podcast.
45:32
Is there anything else you'd like to?
45:33
Have I went to Can Cans Lion this year or last year actually
45:39
with Natalie Amber and she we've got completely different
45:43
disabilities, but it was really interesting to see.
45:45
So she's got crowns, which is more of an invisible disability.
45:50
And we stuck together most of the week.
45:52
And it was really interesting. Like for me, I guess I've had an
45:56
invisible disability. So I did know a little bit, but
45:59
I haven't as an adult. We were meant to be in the
46:01
disabled seating that we have to be had to fight to get in
46:04
anyway. And then someone told her to
46:06
move and I was like, no, she's disabled too, just because I
46:10
guess she couldn't tell me to move because I was very visibly
46:12
disabled and that was the only spot I could go in.
46:15
And I was like, no, she's, you know, and it is seeing like the
46:19
different fights that you have from different points of view
46:23
because I am very visibly disabled.
46:26
So we both went through discrimination, but in different
46:29
ways. Mine was very like I got told
46:33
like they could carry me down the stairs all the time.
46:35
And I went what would you be carried down?
46:37
And then got looked up and down and was like, I don't have to
46:39
be. So mine was quite like just
46:42
people's ignorance to access to the discrimination.
46:46
But then Natalie went through the discrimination of them being
46:49
like, why are you in the seat? I need the seat where they they
46:53
just wanted it for baggage. And I was like, no, she's she's
46:57
disabled too. So I did what?
46:58
I just wanted to add that in. But yeah, it was a lovely to to
47:03
chat with you. I think whatever disability you
47:06
have, you have your own set of hurdles, whether it's societal
47:09
or just like feeling like you're not being taken seriously and
47:13
having to advocate for yourself a lot more.
47:15
And I kind of relate to both sides at the moment because
47:19
sometimes you use a mobility aid so that it's really obvious, but
47:22
then people question, do I actually need it?
47:25
But then on the other side, if I don't use a mobility aid, people
47:29
are like, whoa, like why are you walking like that?
47:32
Or. Yeah, you know.
47:33
It's just like, yeah, there's something.
47:36
On, you can't wait. You can't.
47:37
You basically can't win. You can't wait.
47:40
And yeah, those situations are really tough to go through, but
47:43
it honestly does make us stronger and it makes us, it
47:46
gives us more of a fire in our bellies to want to advocate for
47:50
ourselves and the rest of our community that's also probably
47:54
going through the same things. Yeah, to just educate people one
47:58
silly scenario at a time. Yeah, definitely.
48:01
I love talking to you so much and hopefully we can stay in
48:04
touch. Yeah.
48:05
Thank you guys for listening and thank you to Cure LG and D2I and
48:10
Bridge Bio for sponsoring this podcast.
48:12
As always, if you enjoyed this episode, don't forget to like it
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if you're watching on YouTube and to subscribe and to follow
48:18
the podcast on your favourite podcast platform to click the
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little bell so that you are notified every time a new
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episode comes out and to rate the podcast 5 stars if you
48:28
haven't already. That really, really means the
48:30
world to me. I will speak to you guys very
48:32
soon in the next episode, but until then have a lovely couple.