Sit Down With Us

Ep 11: "You don't need to stare for THAT long!" | Q&A Part 2

• Faith & Zara • Episode 11

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0:00 | 46:30

We’re back with Part Two! If you haven't seen Part One, go back—we talk about everything from career hurdles to... well, our personal lives.

In this week’s sit-down, Zara and Faith continue their deep dive into your DMs, tackling the questions that most people are too polite (or too nosy) to ask. We’re breaking down the "Inspiration Trap," the reality of being "helpless" in public, and the specific etiquette of staring.

In this episode, we discuss:

  • The "Cancer Assumption"
  • The Staring Rule
  • The "Inspiration" Pressure
  • Coming Out Online
  • Finding Community

Join us for a coffee (literally, or we won't be nice) and let’s bridge the gap between curiosity and reality.

Follow us for more:
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🎵 TikTok: @sitdownwithuspod

#DisabilityAwareness #Alopecia #ZaraAndFaith #WheelchairLife #Inclusion #RepresentationMatters #Podcast #ZebedeeModels

SPEAKER_02

Hi, I'm Zara. And I'm Faye. And we would like you to sit down with us every Wednesday. So we're back with Modi Mm. The part two. Yes. Of our tenth. If you've not watched part one, what are you doing? Go back. Watch that. Then come back. There's many things discussed. Yes. To our sexual activities.

SPEAKER_01

Yeah, we nearly sound really bad. We nearly took a road trip to London to out of companies. Um here too much. But anyway, let's get let's get into it. Let's go. More DMs, more questions. So here we go. A DM that I get a lot, and a question just from people out and about that I get a lot that I kind of mentioned in the last step, but may as well discuss it more. I get do people assume you have cancer because you don't have hair? That is kind of a given. I get that assumption a lot. Yeah. And that assumption is wrong. I've said time and time again in other episodes as well, I don't have cancer, I never have had cancer, I have You never claim to have cancer. I never claim to have cancer, I'm not that unhinged. So, like some people, someone's done that. Not that has had lapecia. No, no, no. But some woman has done that. I've I've seen that. Like a personality sort of thing. I don't know. But I'm sorry.

SPEAKER_02

No matter how you choose to spin that, nah.

SPEAKER_01

Yeah. But we spoke about this a lot in my the podcast where Angela, my mum, came in. Good old Angela. I spoke about it in previous podcasts as well of instances. My last instance would be the Tesco's. I was in Tesco's on my way to a photo shoot of all things. That was my pit stop to get a coffee that burnt my mouth. It was well hot. But anyway, as I was getting this coffee, an old man piped up and was like, Oh, hi love. Are you alright? Have you got a cancer? And he was an elderly man, bless him. And there is more to why he had this assumption. So this is why I don't mind the assumption. And I know we've discussed this, and I've said it before, but like it even if you did, why would you ask? Yeah. So, but obviously I say, No, I'm all good. And again, like I like he did the head tilt, like, oh, like, you're still bold though. Yeah, I am, I'm thriving though, mate. And I literally put my thumbs up and went, Yeah, but I'm off to a modelling shoot now. Like, I'm all good, you know? Money's coming in. I'm alright. And then he goes, Oh no, but like sounds great, love. And he had a joke and a laugh, and I said, Oh, are you okay? And he goes, Yeah, yeah, I'm uh and then he did say he's going out later in the week to celebrate him being cancer free. Oh, so this is where I'm like, I understand where the assumptions come from. Okay, and then I understand why you've piped up and asked. So he wasn't just being nosy. No. Right. That makes a difference. Because the majority of people are just nosy and have no filter and just want to ask me upright. But I get a lot of this as well that people in the past have had cancer or known someone with cancer, they then ask me if I have cancer, and they don't necessarily necessarily see it as closure, but definitely find a rapport, relationship connection there. So I understand why they ask in that sense. Yeah, a bit bizarre still, but I have more patience for those individuals rather than the ones that are just curious. Yeah. So yeah. So that's my idea. Love that. I mean, I don't, but yeah. So but that's the answer to that question. I get that assumption a lot, people, yes. And now I'm balancing the DM over to you, Zara.

SPEAKER_02

So someone's asked, again, thank you for these questions. Um, I get this question a lot actually. It's what's something that people do that they think that is like it's helpful or like they're doing it out of respect or whatever, but actually isn't helpful. And the question might shock a lot of you, but for me personally, what actually isn't helpful is helping me before I've asked for help. Oh like just always assuming a person in a wheelchair, a woman in a wheelchair, is just a helpless damsel in distress. Damsel in distress. And don't get me wrong, I am helpless sometimes. Like like I said in the previous episode, like it would be great to be able to reach the top shelves in Sainsbury's, Tesco's, what have you. But I'm not in constant need of help. Yeah. If that makes sense. So yeah, I've had like previous episodes we've talked about people pushing me in the streets, thinking they're being helpful, or people just like outright, pushing me everywhere. Like I've had people pushing me at night nights out. Like, not friends or like people I'm with, but like literal like strangers. I'm like, oh, let me just help you there. I'm sorry. Would I if I touched you or pushed you, you'd smack me into next week.

SPEAKER_01

You're not violent, but no, I'm not a violent person. But on a night out, especially, you just you kind of you have your own space bubble and you don't need to touch. You don't touch other people.

SPEAKER_02

The whole helplessness being the synonym of a disability thing, I I need we need to get rid of it. Like, I'm sorry, it's 2026. Yes, this disabled people, majority of them have carers, which kind of initiates we are help helpless. Yeah it gives that assumption that you are helpless, but but no, I'm I'm um look at me now. Are you helping me? No. I mean you are helping me in general life, but not because of my disability.

SPEAKER_01

No, because I just bring the vibe.

SPEAKER_02

Oh yeah, absolutely. But yeah, so the to answer the question, what was the question? Um, what's something that kind of seems helpful? Um pushing me, or like assuming I need help. It's it's it's the it's if anything, one, it makes me doubt my own abilities, and two, it makes me feel like what like what what what are you doing? Like it makes me feel disrespected in a way it's really weird.

SPEAKER_01

I could imagine it would make you feel less independent. Yeah. When you are very independent and you go about your normal day, but then one person can just almost use their power above you.

SPEAKER_02

Yeah, just like a power. It's we it's a weird one, because like on the surface, it sounds great, like someone like helping me do this. But it's like ask. Just question it.

SPEAKER_01

Do you need help? Do you don't just do it? But I think one thing that comes under assumptions a lot was another question that I got that was kind of similar. I think it's the assumptions that people assume they can ask these questions or assume they can just you know, yeah, take over. So this um DM is what is one thing you wish strangers understood about your alopecia before they stare or ask questions? Ooh, that is a hard question. So one, please don't stare. Oh, do you know what? Amen. Because I'm sorry, like Amen. If I was in a circus, I would be in Cirque du Soleil and you can stare. But uh I'm not a circus freak, so please don't stare at me. Can we just put please don't stare at the tiger line on the top? Because I don't know in what world. Because in my mind, I'm like, you've seen, you've adva you've admired, now move on. Yeah, like I've had like I've had instances at the gym, literally at the weekend.

SPEAKER_02

I was like, in mid-set, bearing in mind, okay, I get it, I'm a wheelchair user doing a squat. Like, it's interesting. But yeah, look, be on your way. You don't need to genuinely, like I said in the previous episode, 20 squats, midway through 20 squats. I'm like down, come back up. This guy's staring. Come back up this time.

SPEAKER_01

Genuinely, at least through the six reps afterwards. I just think it's like so. That's one thing I wish people knew. Just don't stare. If you haven't started, I would I would rather you come up to me and ask the most unhinged question than stare at me like I'm an alien. Yes. It makes me feel like unhuman because just staring at something weird. Like what? And I and it also I think makes my perception of myself worse when I notice you staring more because it makes me angry. Like it, I'm not gonna throw hands, but it makes me like I will wave and smile until you stop staring at me. Oh yeah.

SPEAKER_02

Like, stop like I I stare back now. I mean, not at the gym when I'm like midset sweaty, but like when it's on the bus or whatever, I'm like, Yeah.

SPEAKER_01

My partner does that a lot now as well. Does he? He will actually announce, like, we were actually were at his physio the other day at his fine. He basically we walked into the waiting room and he went, Wow, a lot of people are staring today. Oh he announced in the room, love that. But this boy doesn't care. Like he I'm like, love that. Like, babe, you can't say that. He went, I will say whatever I want. And I'm like, you know what? What were people's reactions? They just stopped staring. It works. Because I'm like so, but I'm like, oh but at the same time. Love that. Just yeah. So I wish people that and then another thing, um, what was it before they ask a question? Repeat it in your head first. Yes. Fact check it. Like just be with yourself for a minute. Just think, do you actually need to know? Yes. Are you genuinely being curious or rude? Or what is the reason for this question? What is the reason? So someone actually said to me the other like a few months ago now, so they said I had a I I look like a pixie. Like with my hair cut, like my hair cut, my hair lost, lack of hair. They said I look like a pixie. And I grew up with that Barbie versus Pixie dolls film. Oh yeah. Oh yeah. Yeah. Yeah. And so I was like, oh Pixies are quite cute. Alright, I'll take that, thank you. And then she continues and goes, Yeah, you've got a really nice skull. And I'm like, This is such a bad-handed compliment. I know you probably meant it well. Yeah. But all I'm thinking about is you are imagining my head on your mantlepiece right now, babe. Like I think I have a nice skull, but I don't want to find out.

SPEAKER_02

Oh no, no, no, no, no, yeah.

SPEAKER_01

Like, I guess I'm glad because it's on show every day, but I mean you don't need to announce it to me. Oh no.

SPEAKER_02

Yeah. Yeah. Oh gosh. I didn't think of that.

SPEAKER_01

Yeah. So so that that like I didn't need to know. No. Some things are better left unsaid. Yeah. Keep it to yourself. Yeah. For something. So that's one thing I wish that people understood before they stare. And also actually understood that I'm happy. Like, yeah, I don't wish to have my hair back. Don't I don't I don't want people to stare and feel sorry for me. I'm very proud of my journey and where I am today. We are proud of you. Thanks. Okay, thanks. But I think overall, know that I'm I'm well, thriving. Yeah. But good. Loving life.

SPEAKER_02

That was really mank. Loving life. Loving life. We are loving life. We are. Um so next question. So one thing I I get asked in real life, as well as like on the DMs today as well, is one, like, how have I got the confidence just to live my general life? Well also this question more specifically, how did you get comfortable talking about your condition so openly online? And this was an interesting question that I thought I got because I don't think I've ever fully talked about my actual condition online. But I guess like putting myself out there being a wheelchair user, that's seen as me putting my condition online, I guess. Because I've always thought to myself, I'm kind of like not not completely in the open book because I don't really share the ins and outs of my disability. But I guess I do because people think that I do, that I'm like comfortable doing that.

SPEAKER_01

But yeah, so how I think it's how did you get it? I think that relates to you as well, I would say. Yeah, so I actually I guess outed my alopecia properly online. I was 18 at a bar, about to go to uni, so I was leaving college and I was there with my two mates and two best friends at the time, and they were also going to unis and we were all going to different universities, so it was kind of a big farewell. And I knew going to uni to study dance, I'd already made the decision that I wouldn't want to wear my wig to dance classes because at this point an event had happened with my wig and dancing, which is a story for another time. Um it's a juicy one, but um what what happened was I had a photo that I really really liked that I took without my wig, without my headband, just the hair I had in a ponytail messy bun kind of thing, which to be fair, I do look bold on this photo because of the shadowing and the at the time 2018, filters were kind of in still. Yeah. So there was a filter on there. I was 18.

SPEAKER_02

Yeah, classic.

SPEAKER_01

Yeah. So I posted that photo, and strangers hyped me up, people I thought didn't like me hyped me up, people I hadn't spoken to in years hyped me up, and it was for me to post that on Instagram, I didn't have many followers, but it was my I couldn't believe the support I got from one photo. Oh wow. And from that, I and then with friends that I met throughout university, meeting my partner now, meeting more alopecians online. That that was the turning point. When I saw another bald woman online, I was like, I can do this. Like, I can be that role model for a 10-year-old that's Googling on YouTube how to do their eyebrows without any eyebrows because that was me. When I was 14, I literally Googled how to do eyebrows without eyebrows, and I think Zoella came up. Oh, yeah, love Zoella. Nostalgia, yeah. Zoe song. Yes, um, she came up, but she had hair. But that's the best kind of vibe YouTube video I had. So fast forward a few months later, I started my own YouTube, which I should post on Multi TV.

SPEAKER_02

It wasn't always like this where like TikTok and like Danny G wasn't there, and many other like Alibians weren't there.

SPEAKER_01

This is all very new, how much online and social media has helped this. It's a it's new. Yeah, like and it's great. I think like past five years, like even that, like only then have I been comfortable to share because throughout high school, you wouldn't see me leave the house without a wig, unless I was seeing family. Like that's how insecure I felt in myself. So I think for one, I had to love myself for who I was. Definitely. Two, I did it for myself to make I guess life easier. My in my I guess motivation for posting it to Instagram before I went to university was so when I meet people at uni, if I was in my wig or if I was in my headband, or if they could see my hair loss, they would most likely share Instagrams. That'll that's what would happen. They would then stalk me. Yeah. As you do when you meet someone near, you normally stalk them. We've all done we've all been gone. We've all done it. They would then see my story. So that's was my motivation behind it. My story was there for people that wanted to know more about me. Yeah. And because I put it out there, I knew how to articulate my words. Yeah, I could then more easily talk about it to a stranger if they didn't. I love that.

SPEAKER_02

Um it's so interesting because for me, I I didn't really have that like a moment in terms of like, so for example, all my baby pictures, all my high school pictures, uh, wheelchair is nowhere to be seen. I just always thought it just doesn't need to be included.

SPEAKER_03

Yeah.

SPEAKER_02

It just out of sight, out of mind. I think that was the tagline of me growing up. Wow. Out of side, out of mind. And I think my to the point that my first ever person that I followed who was visibly disabled was during COVID.

SPEAKER_00

Oh wow.

SPEAKER_02

And I was like in my 20s at that point, so very late in life. Um, obviously I'd been like part of like wheelchair basketball groups, I'd been around disabled people, but not seen it as like an online presence until I actually followed Chelsea Hill, who is an American influencer, I believe. Um, she's great. If you don't know her, go check her story out. But I was never one of those people, I was always into like the likes of Zoe Sugg, and I wanted to do that whole like influencing thing, and I dabbled in it a little bit, but I I didn't want to do it, I didn't feel comfortable putting my disability forward. And to be here now where like my disability is part of my story. It's not like I've not made it my personality, don't get me wrong. It's still part of it, but like I'm addressing it rather than hiding it away. Yeah. And I think that's literally just because it's come with myself growth and me accepting it and just knowing it's not gonna go away. Yeah.

SPEAKER_01

I kind of see it as someone out there will need potentially need your help. Yeah. They need to hear your story. Yeah. So I see it as like 10-year-old me would have wanted this. Definitely. You know, from where I was. I had no one in my life growing up I knew with alopecia.

unknown

Yeah.

SPEAKER_01

Not not a soul. Not a soul until I guess I was 19 and I saw people online. I did a few like online calls through COVID. That was about it. I knew nobody else with alopecia. I think the first alopecia individual I met is called Jess Newman, I think. I'm really sorry if I got her name wrong. But she does like fashion online and clothing fashion, and we met at Cheshire Fashion Week back in oh I want to say 2019. I feel like it was before COVID, but it was that long ago. So siny memory here. Yeah, like, and that was it before COVID or after COVID? I was bald, I know that. So, but yeah, and that was the first time I saw another bald woman, and I was like, oh my gosh, there's more of us. There's there's a whole like there's a whole group, but there's a lot of us that day was the first person I've actually met someone else bald. Oh you know, and then obviously that has now grown to more people online that I've met. But yeah, I think to if you want to post anything about your condition or something personal to you, you need to accept it and love it first.

SPEAKER_02

And don't feel like you're doing it for the views. Yeah, no. That's not how you get comfortable. No, no, it's not how you get it. You can't do it for the views or the likes or the comments. You do it for yourself. And always remember you can't, this is gonna sound scary, but you can't take back what you've put out there. So genuinely just put out what you're comfortable with. 100%. Because I I follow a load of people, or like I see loads of things on social media, and it's like really intimate and like really private stuff, and I'm like, Jesus Christ, like are you really confident? Like, it's it's even when people like, I mean, good on you for doing that, like you do you, but like when people do like birth vlogs, yeah.

SPEAKER_01

And I'm like, Jesus Christ, yeah. It's like I I enjoy it's lovely that people document that, yeah, but to see it, I think it's because I'm just not there going to be a mother anytime soon. Like maybe one day, but not anytime soon. But not ready. No. I think that's why I can't, but any, I guess, like people that are pregnant now might appreciate that video. But again, I think it's it's where you are in your life and what you want to put out there at the end of the day. Yeah, so yeah, just just just be c work on yourself and then think about posting it online. Yeah.

SPEAKER_00

Mm-hmm.

SPEAKER_01

Um yeah. Yeah, should we move on to another DM then? From that. So this next question is deep. Ooh. And tissues? I don't know, you know. Tissues potentially, but this this this DM threw me off, and I feel like we could both answer that. Okay. But it's do you ever feel pressure to be inspirational all the time because of what you've been through?

SPEAKER_02

Straight off the bat, yeah. I do I have mixed answers about like mixed feelings about this. Yeah. Because I feel like people assume that I should be inspirational because of my disability. But me as a person, maybe it's the growth, maybe it's the therapy, maybe it's whatever, maybe it's the way I've been brought up. But I don't see myself as again, it's gonna sound really weird. I don't see myself as anything special to be able to be inspirational. Does that make sense? I get you. Because I think So I therefore I don't feel that pressure, is what I'm trying to say. Yeah, because in your eyes, you're just living your life. I'm living. Literally always gonna swear, fuck around and find out. I'm just effing about and finding out what happens in the end. I am not trying to be inspired. Don't get me wrong, going into the modeling industry, it is amazing that other um wheelchair users are gonna see me, maybe potentially younger audience are gonna see me and think, oh my gosh, I love that. But I'm doing it not to be an inspiration, but all but to normalise it. And as actually the opposite of inspiration, to be like, it's normal. It's not we're not when we're out there, we're not being inspirational, we're just like anybody else. Yeah. Does that make sense?

SPEAKER_01

To be fair. I feel like because I've gone from like having hair to like not having hair, and I've now documented my life after I've lost my hair. Um I do feel a pressure to be inspirational, but only because I I get the question I get the comment that I am inspirational all the time. You are inspirational, don't get me wrong. But I feel like everyone goes through their own life struggles and that's inspiring in itself. But I think that I feel pressured to keep being inspirational because people are inspired by me. And I love that because like 10-year-old me would have been 10-year-old me would have adored me right now. Look at me bigging myself up.

SPEAKER_02

I but 10-year-old me would not believe.

SPEAKER_01

No.

SPEAKER_02

Would not believe.

SPEAKER_01

No. But I think it's like I now feel not worried to fail, but I don't like I'm hesitant to post my failures because people want to always see good and see like winnings from me. Oh, 100%. When and I think that's also the culture we're in now, yeah, which is quite rubbish. But I highly agree with the concept of you have to fail to grow.

SPEAKER_00

Yes.

SPEAKER_01

And so my failures aren't failures. If anything, a failing is a win. Yeah. Because you then learn from that mistake to grow. And then do something else different. And then that's where you wanted to be. In the past, I've wanted to be inspirational and to be an inspiration to people because I wanted someone. I wanted that.

SPEAKER_02

Yeah.

SPEAKER_01

Like I wanted someone else to be inspirational for me. I wanted to be inspired by someone else. So now I want to be that inspiration for the younger girl that can't accept her other piece show or is struggling so much. So it's a it's like a a balance being like a yes and a no.

SPEAKER_02

I think for me, when I realise that people see me as an inspiration, is when so, like I said, I don't really make, I don't really address my p my disability on my socials. I do more now, but I didn't used to. And I remember about a year ago I posted this reel and it was a trend, is like, you seem happier. And the twist that I put on it is that I accepted my disability, or like, um, yeah, I've learned to accept my disability. And I got so many responses from that, and I was like, oh, hang on a minute. So I am actually like it's it's weird, like it so I am actually inspiring people. Like it's like to me, like I said, I'm I'm not anything special, but I I don't mean it in like a feel sorry for me kind of way. But I I don't know how to explain that I don't feel like I'm special.

SPEAKER_01

I think it's because I I am just living my life, like I'm I'm not special, but to someone who is Hey Dodo, I'm you are special to someone who needs to see that side, yeah. That's where like the inspiration comes from. But I get the sense of like I'm just because I'm living my life day to day doesn't make me inspirational. I'm just dealing with the cars that I've been dealt with.

SPEAKER_02

So I think it's that balance again. I've literally been on dates recently where like people have just like sat opposite me and gone on about 45 minutes about how I'm an inspiration. Like, literally, I was telling this guy about like my like day to day. I was like, Yeah, I went to the gym and he's like, Oh, you're so inspirational for going to the gym, like find this like honey. What would you want me to do?

SPEAKER_01

I mean, I don't mind the term if I'm actually being inspirational. Like if I like the cover line. There's a fine line. Yeah, if I'm doing a performance with Little Lady Locks, I I normally have in the past started doing my wig and took it off. And I feel like that's almost don't judge a book by its cover vibe that I'm going for, and I feel like that's inspiring for those to say, like, actually, this is how good their wigs are, yeah, you know, and to inspire young younger girls and younger women that accepting your alopecia and wearing a wig and having fun with it is a great thing. That's great. As much as wigs helped me helped me live my alopecia, yeah. But if I'm just like not doing anything like out of the ordinary, and I mean because and you call me inspirational, it doesn't make sense because when I was 12, and I'm not sure if my if Angela my mum me mentioned this in her podcast, but when I was 12 years old, I needed a wig desperately. It was my first ever wig, and bear in mind at that point I didn't want to wear a wig. Uh it was like the last thing I wanted to do, but I had to. And we went to the dermatologist, which is very wrong. If you have alopecia, go to a hair clinic, go to a hair specialist because it's not a skin condition, it's an autoimmune condition. Um, however, you do have if you do have eczema and flare-ups, yes, that is a dermatology skin condition. Yeah. Um check with your doctors. Yeah, I'm not a doctor, but that's from my experiences. Um, dermatology did not help at all. And so, but we got this dermatology appointment, and what we thought was going to happen was that we would get a voucher to get a free wig. That's all we went for. Yeah. I got a lecture from this woman. Oh my god, where had like a student doctor and like there was about three other people in this room of a profession that were telling me a 12-year-old that I was inspirational and she was and this woman was borderline crying. I was 12 years old, I just wanted a wig babe. Like, I didn't feel inspirational at that point. No, I wanted to be inspired, to be confident. Yeah. And like, yeah, a 12 year old. I didn't need that at 12 years old. Like, okay, I'm inspirational. How? I want a wig, babe. That's all I want. Yeah like when I was 12.

SPEAKER_02

I'm not inspiring anymore. May maybe you are inspiring people from afar, but like you're not trying to be. So I think inspirational.

SPEAKER_01

Their way of, I guess, feeling sorry for me. Because I think they just felt sorry for me and wanted to help, but they couldn't help. So they said inspirational, but that was just the wrong word to use. It was, I mean, I literally ended up grabbing my mum's car keys, grabbing my dad, and like, let's go.

SPEAKER_00

Blackpool. Were you gonna say grabbing a wig?

SPEAKER_01

Grabbing a wig, I wish. I wish. But no, we literally drove to Blackpool that day and just bought a wig. And I was like, let's turn this day around because what just happened. Yeah, that's not it. It was a bit crazy. Right. Moving on. But just a side note, I do love to inspire young girls. Oh, that's cute. I do love to and that's why I put content out there to show younger girls and younger women that you can love your hair loss eventually. It is a journey to get to it, but you can also love weights.

SPEAKER_02

Speaking of younger, the younger generation, I've had people come up to me, like with kids that are like disabled, and be like asking questions about my wheelchair, being like, we are thinking about this wheelchair, like how'd you find it and things like that? And I'm like, that you're more than welcome to come to me for. Coming to me in person with like a random question, don't do that. But like questions like that, I'm like, listen, I've got all the time for you, babes.

SPEAKER_00

But yeah. Yeah.

SPEAKER_01

I think that's when it like really brings it back as to what as your why, your purpose, your why. Your why. That's my purpose, that's my why. Yeah. For the 10-year-old faiths out there. Oh, ten-year-old faiths out there.

SPEAKER_02

Yeah. Love that. So something a bit more lighthearted. Um, and I think you could answer this as well.

SPEAKER_00

Okay.

SPEAKER_02

And someone's asked, can you talk about a moment or somewhere where you felt really included as opposed to the previous episode where I've talked about a place I was completely excluded from, to the point I was not even let through the door. Wow.

SPEAKER_01

Um yeah. I think um the first time I felt it was I did a wig shoot with Demuse. Ah. And everyone there, we were just trying on different wigs and it was to launch her eyebrows and loved it.

unknown

Oh.

SPEAKER_01

Because we all shared obviously alopecia similarities. I came without my wig. I at that point I wasn't wearing my wig. Mm-hmm. Uh wigs at all. Uh, but other women that were there were wearing their wigs. And yeah, I don't know. I just that day was like the first day I'd met multiple alopetians, girls with alopecia, pe girls that wear wigs, women that wear wigs in one room. And I think that for me was like a that was a big a big moment of like, wow, like this is a gorgeous community. And I felt so included right then and there.

SPEAKER_02

I think to be honest, for me, I school half and half. Yeah. Do you know what? Actually, funny enough, um, going back to excluded, a tiny bit, I remember my first day at school, or like my what's it called, inset day, or like day. Open day open day, whatever. They literally were like, this is your playground. Bearing in mind it was high school, and it was literally the size of this room, and that was the only area I could be in because of my disability, and I had a support worker, but also yeah. And I was like, listen, love. This listen, love keeps coming back. I was like, listen, love, this little love. I don't know if you just realize what you've just said, but there is no way you could keep me in this confined space.

SPEAKER_01

Why was it only that space?

SPEAKER_02

Because otherwise it would be like, oh, it'd be the field and like the people playing football, there's the dangers of the football hitting me head, apparently, and it was just like this was the only safe space to be bubble wrapped and just sit love, wow. So obviously complained, and they were like, Yeah, you're right. And I was like, Yes, I am. So I was like, and then as well as that, I don't need a care um you're right, you yes, I am. This is do you know what? I always say this I'm nice until you're not. Yeah, that's one thing you should know about me. I'm I'm but it wouldn't melt until you're not.

SPEAKER_01

Anyway, I am nice after a coffee.

SPEAKER_02

Oh yeah, I know. I've I've seen it first.

unknown

I know.

SPEAKER_02

I know, I know. Trust me, been there, done that, yeah, gone. Yeah, I'm not never meeting you without coffee. This is why when you came in this morning, first thing we did was coffee. Did that not like translate?

SPEAKER_01

Was I started? Oh dear, okay. Oh, digressing. Moving on. So from that, when did you then feel included?

SPEAKER_02

Yeah, I kind of remembered.

SPEAKER_01

Sorry, that was my fault. Sorry, alright.

SPEAKER_02

Keeping go. Um Zebedee, Zebedee, yes, Zebdi. So, like I said, that was like Zebedee was my whole like introduction to like the model modeling world. Me too. And I just was like, whoa, like there's the people here that understand me, what is going on? And I just every experience I've had with Zebedee bore a couple, um, that like wasn't Zebedee's fault. Um, like for example, like clients booking me rooms that are like not truly accessible, we've been there. Um, but as a whole, with Zebedee specifically as a team, that's inclusion. 100%. And obviously they're clues in the name inclusive agency, so you'd hope. But you'd be surprised the amount of places that claim to be inclusive. Absolutely not. I know not. But Zebedee truly is. Yeah.

SPEAKER_01

So yeah, I think that's that would be. Yeah, most obviously Demuse was my first encounter feeling very included and feeling that inclusivity. But now and most recently it would be Zebedee. 100%. Love ya. If you're watching.

SPEAKER_02

I know you I know you're watching because our agent actually comments. Yeah.

SPEAKER_01

So we know she's watching. Okay, so next one. A um DM I got, a question I got was what's the best comeback you've ever given to someone who's made a rude comment about your hair? Oh, absolutely. So I'm one of these gals, right? In the moment, I I can't think of it. Oh yeah, I'm always the one in an argument. 24 hours later, oh, I could have said that. Yeah, I'm kind of like stunned, like taken aback a bit.

SPEAKER_00

Yeah.

SPEAKER_01

But like as time goes on, I get like I get the comeback. So the one that I love, someone once said, I look like Voldemort. This was a message, by the way. Stop it. It was yeah, so it was a dance video I posted. It was very darkly, and we were kind of covered in like black paint. And this was through my master's degree, and I posted this video, and the video did quite well for me on Instagram, very proud of it. So it had slow black. No, so we were it was red lighting, but we had like a like a vest top on, black shorts, but just black paint like splattered on us. Ah right. Um, almost like we looked like mud. Yeah. Like, you know. And so I posted that and then a woman commented saying, at first glance, I thought this was Voldemort. You look like Voldemort, basically. A woman? Yeah. A woman? Yeah, yeah, yeah. A girl, yeah. Not being sexist here, but women pick women up. Yeah, no. So then I then commented saying Avarnicadabra bye. No, no, no. You need to. Could I use my powers? You need to say that um Is that what Avarna Kadabra? Goodbye. Said to me. I love that. Like, if I'm Voldemort, I will be Voldemort. I will summon you today. No and improved with a nose. Another one I've had is Gollum, and I'm like, oh sorry. Come on. No, Gollum had hair, my love. Do something. Yeah. Oh, didn't it? Gollum's got hair. Like strands. And I'm like, do research. Factor. Gollum. Come on. So then, yeah. Yeah. And that was I mainly got comments through daddy. My YouTube.

SPEAKER_02

Yeah. And do you know what one thing for me about hate comments, not that I get a lot, or like DMs or whatever. It's like you it's not like I've spared a moment. Because you're typing this out. At any moment you can just not send it. Do you know what it's it's like you really thought that was a good comment? Yeah. Like you know, it's it's not accessible. Accessible. It's not accessible. Acceptable. It is not acceptable.

SPEAKER_01

So that is one for me.

SPEAKER_02

So someone's put very nicely, um, if you don't mind, can you actually say what actually happened to you? And I have a love or hate uh relationship with this question because this isn't the first time obviously I've been asked it, and I do sometimes get asked it like face to face. Yeah. Um so yeah, so to answer that question, it wasn't a shark attack. I think I've mentioned that in one of the previous episodes. It wasn't, I know, right? No, I know it's not. What do people assume that? It's because you're no, but like some people are like, oh, was it a shark? And I'm like, oh yeah, his name's was James. There's just he's just chilling in the Indian ocean. Like, come on, what do you mean was it a shark? Oh my gosh. Um okay so I was actually again, uh if you've not watched one of our first episodes, I explain it kind of on there, but I have a disability that I was born with, spina bifida. And yeah, it I was born with it. My mum was pregnant. I was born. Uh-oh. Her spine is basically outside her body. Basically, part of my spine. If you don't know what a spina bifida is, in short, part of your spine swells up and it kind of like grows outside your body. I've probably said that in the worst way, and if you're a medical professional, you're gonna be like, what she just said, but that's how I would describe it. And I've got lived experience, so ha. You're allowed to describe it like that. Oh my god. So yeah, so and then one thing that people don't understand, that's kind of like I guess my hidden disability is that I've actually got an implant in my head that not a lot of people know. And it's basically because so spinal is one of those disabilities where it's like an umbrella and a lot of SHIT can come from it. So, for example, it because of the loss of nerves, it can lead to different things. For example, one of the things it can lead to is hydrocephilis or hydrokephilis. I think it's a Roman term, I don't know how you pronounce it. Again, medical professionals correct me in the comments. Um thinking like loads of medical professionals are watching this right now, but one can dream. Um and it's basically where you're so in a perfect body, um, your brain fluids gets like drained out, your body. Whereas with mine, it wasn't draining out. Okay. And internally would like basically mean m my head would physically be bigger, but also it could lead to like literally death if I wasn't to like drain it properly. Yeah. So they put this in implant in my head, like literally, it's like a cochlear implant, like next to my ear, but like in inside it, and it kind of drains it out. And that's kind of a hidden disability type thing, because like not a lot of people know about it. And yeah, that is pretty much what's actually happened to me. So yeah, no shark attack, no car accidents, fortunately. And I say fortunately because maybe um unpopular opinion or like unpopular thought to have, but in the most weirdest way, I'm actually glad that I've not known any different. And this might be hard for some people to understand, but it's because I don't have anything to compare it to. Yeah. Like I've oh sometimes I say, like we've talked and I've said, oh like I would like to know what it feels like to run, and I've said it to my friends, but I I would have thought it would be hundred times harder going from knowing how it feels like to run and then not being to, being able to, than to never knowing what it feels like. Yeah. And I think, yeah, and I think if you get it if you get it, and you don't if you don't get it, you don't get it. It's one of those. Yeah, yeah. So yeah, that's that's my personal question.

SPEAKER_01

I think that wraps up my really. I think I've got one more, which we can both answer actually with this one. Ooh, keep me. So my last question that I got was Um If you could go back and tell your younger self something about your journey, what would it be?

SPEAKER_02

Ooh. Love that question. Do you want to go first?

SPEAKER_01

Am I going first? If I were to sum it up in a sentence, I would say, trust the process. Trust the process. That's one. My journey really has been a process. You know, I've I've done the looking at myself in the mirror and crying. I've done the wanting to rip my hair out, you know, pull my bun out for dance class, done it all, you know, I've done the like oh, so much. Yeah. And so I think It's been a journey. It's been a journey. And so if I could go back and tell younger Faith, I would tell her, trust the process. And not that everything happens for a reason, but obviously we're at the other end of it now, where we can see the pot of gold at the end of the rainbow, and we're at the end of the storm kind of thing, light at the end of the tunnel, that's how we're feeling. So I'd think there's gonna be a lot of lows, but there's so many highs that are unbelievable that are experiences that I would not have had if I did not have alopecia.

SPEAKER_02

Do you know what I'm thinking about? Imagine like we're doing this in like 10, 20 years' time. We'd be thinking, what would you tell your 20 year olds? Oh my gosh.

SPEAKER_01

Oh my god, I'm not ready for that. I'd be telling myself to stop drinking coffee. I reckon we'd be. Still be doing broadcast potentially. Old and grey.

SPEAKER_02

Yeah. Go on. Um I think this is gonna sound weird, but I will kind of explain. But maybe nobody cares. Nobody cares in the best way possible. I like that actually. Because I was very because obviously my disability is visible. So I was very aware, um, as I got like from 10 10 onwards that I what looked different and it kind of stopped me doing a lot of things. So for example, I'd in the summer it'd be like the heat. Obviously, I live in the UK, so it can't be like 40 degrees, but we had the odd heat wave, all right? So like it'd be hot and I wouldn't wear shorts because at that point I was always wearing leg braces. So I was like, oh, that doesn't look right. I don't I don't want to show my braces. But nobody cares. Like people I was I used to think people are staring. It's not right. Nobody cares. Yeah. Honey, 10-year-old you, nobody cares.

SPEAKER_01

Literally nobody cares. Yeah, I think this is one thing I loved when Kai came on that he said that everyone's living their own life. Yes. Like their mundane, normal life. You know, you are maybe like a 0.5% out there day if you walk past them. Yeah.

SPEAKER_02

And so don't get me wrong, like as a child, as like a 10-year-old or a person going through high school, primary school, whatever, I was given the odd comment that probably contributed to that. So for example, I had one time this guy being like, oh, wheel away in the middle of the playground, which low blow, mate, low blow. Um, but nobody cares. In in general, nobody cares. No. You do you. You do you.

SPEAKER_01

I'm loving that. As a whole, you do you. Yeah, do it. Anyway, thank you so much for listening to our DMs, our questions. This is our 10th, 11th podcast now, part one and part two, done. Yes. Thank you so much for watching.

SPEAKER_02

And this isn't gonna be like the end of like answering any questions. If you do have questions, please let us know. We'll we can like talk about it in the podcast anytime. It's not just gonna be like, this is it, we're done. We're open books, honestly.

SPEAKER_01

Yes. Yeah. Just say yes. We'll see you next week. Next Wednesday. Bye.