What Nobody Tells You About Adulthood

Welcome back! 

This week, we're continuing our conversation from last episode and opening up about the things that caught us off guard as adults living with a difference and physical disability. 

We get real about public perceptions, low days, navigating relationships, and the daily frustration of an inaccessible world. 

If you haven't listened to last week's episode on childhood yet, we recommend catching up on that one first!

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Transcript

SPEAKER_01 0:00

Hello, welcome back and sit down with us whilst we talk about things that surprised us as adults.

SPEAKER_00 0:07

Yeah, what we weren't prepared for basically because last week if you want to catch up we spoke about what we weren't prepared for as children you know growing up but yeah which we got in really deep so if you missed that I would say go watch that yeah and then come back to this one because this episode might make more sense if you have seen last week's that's the only thing and if you're new here please like subscribe do all the things and if you've come back still do all those things if you haven't already and let's get into the episode let's go I think first and foremost I going into an adult bold at this point fully bold fully bold yeah uh and no not wigs not wearing a wigs not at this point especially when I reached like 19 so I would say that's when I was like an adult because you're not a teenager anymore like you're growing out of that so 20s and up but till now I'd say public perceptions judgment the like definitely yeah people's assumptions and awareness that's what I was not prepared for like I wasn't prepared for the stairs like I wasn't prepared for like how like almost forceful and pushy people would be to ask a question that's not appropriate yeah like the audacity the entitlement to know everything about you within like this five seconds of meeting not necessary not at all especially when like you're just out in like I was out at a jewelry shop jewellery store with my mum and my sisters and um a gentleman looked at me funny and like rolled his eyes but I think it's things like that that I'm like one how do you have the audacity to comment on someone's appearance and two I was a young adult like like you've lived your life have some grace surely you've you're like you've lived you've had like lots of life experience and I feel like it's the people that are older than me that do have those perceptions. I get younger kids as well. It's generational I think yeah 100% it's definitely generational and I think when it's a child saying something so or not a child but a teenager saying something like I was out the other week celebrating my birthday and a boy shouted looks like my dad oh for goodness sake and so my partner and I we were talking to two guys at the time and we all turned around and stared at him and none of his friends were laughing just him so I just knew he'd only he'd said that because clearly he probably hadn't pulled that night not had a good night and probably just wanted to laugh and to make his mates laugh and it didn't work.

SPEAKER_01 2:40

So it's it's things like that that I wasn't prepared for the fact that people will use me to like get a one upon me and use that as they're better then yeah I think similar story with me that just made me think of it I don't know if I've mentioned this in our travel episode but there was a there was there was one time where I was travelling alone and I was at the airport and there was a group of lads like I think I would I would say they were like 16 17 maybe 18 I don't know how old you have to be to travel I don't actually know but they were on their own and I was going fast because I was like about to miss my gait and I could just hear them going whew as I was going fast I mean saying it is making me laugh because it is funny but it's just immature it is immature yeah like I'm not her being like oh my god but also it's it's like such an eye roll like what yeah like come on yeah so I think yeah it's I see it as like that I see it as like how original literally like if you're gonna try insult me and make a joke make it funny. I literally turned around and was like like usually I'm the kind of person that like at 3am I'm like oh I should have said this I should have said that but I don't know what came over me but I was like instant reaction turned around and was like grow up and then his mates all after him and I was like that's what we wanted. Yeah that's what we wanted yeah but no I think for me it's easier to brush off an a child or like uh someone younger than me saying something rather than an adult or like someone that's like much older than me.

SPEAKER_00 4:17

Yeah oh my gosh if a child comments passes comment I don't mind at all if for anything like I look to their parent and kind of be like chill yeah like they're learning it's fine they haven't probably seen a bald woman before it's fine like yeah it happens a lot when I'm like doing my food shops because I just don't wear my eyebrows don't wear makeup I'm bearing tracky bottoms not at the moment because it's still bloody boiling loving it but she's not yeah I'm just like it's fine.

SPEAKER_01 4:42

Also are you um Zara or a faith like are you loving it or are you hating it because I feel like people are really divided by this heat yeah should I say I like it no that's what I'm saying I'm like a mm like a lovingless life. I'd love I I'd love a bit of rain now. I'm liking it because I basically don't have any holidays book this year. So this is neither do I but I'm over it.

SPEAKER_00 5:05

You're the kind of person that sits in the shade on holidays though normally yeah I was up until I was 18 and then I went to a biza with my friends and I was like I want to sunbathe and I got a really nice tan and all my freckles came out well I had factor 50 on babe let's be serious but still but it was like 80 UV and I was no not 80 UV I was like were you at the sun? No it was ain't eight UV okay and I was like that's quite high yeah but I was everyone else was sunbathing.

unknown 5:35

Okay.

SPEAKER_00 5:35

So I was like I'm just gonna do it and it was great. Did you not oh was it I loved it but I can only do it for like 10 minutes not like 10 minutes.

SPEAKER_01 5:43

I think for me I get bored. I'm a very I'm I'm pretty sure this is like something I've diagnosed but I I can't sit still for longer than like half an hour. Yeah so I also find it hard to like just like people who just sit there for hours I'm like I cannot relate to you. I need to be doing something but anyway honestly take a shot every time we digress genuinely because why do we do this?

SPEAKER_00 6:11

But however as much as there is a big public perception and awareness that isn't there but slowly building that I wasn't prepared for I'm hoping that I'm helping create that for the next generation. Oh a thousand percent this is why we're here yeah especially because I had no idea how big of a community there actually was for alopecia for people with differences for different disabilities there is a massive community online and I think it's one of those where it's almost like a domino effect like someone will see you as someone with alopecia and then they'll be like oh I can do this so they'll also come on that com community does that make sense so I think it I think it wasn't a case of that like we didn't know of it but I also think it was a case of there wasn't much of it. Yeah not that we didn't know of it if that makes sense you know I think it was I will always say as soon as I started following people that looked like me I literally went on my social media and online and I unfollowed every influencer that didn't look like me. Oh I followed everyone that didn't look like me everyone who I didn't agree with I unfollowed and I started following people that had alopecia that were bold that were dancers that you know were into things that I was into not just people that I'd watched growing up almost like that transition to like match my maturity at the time just so I could like keep going and like keep growing with how my appearance would be I think for me on social media especially sorry were you gonna say something yeah no I was just saying because at that point I realised I was gonna be bold so I just gotta own it.

SPEAKER_01 7:42

With you should with me I think it's first started through social media it first started as being ignorance is bliss. So I followed literally everyone that didn't necessarily look like me and I was like hang on a minute this is a bit like I cannot relate to you. I can some aspect like with your hair and makeup and all that jazz but I can't relate to you as like your lifestyle. Yeah so I started following people like Chelsea Hills who's like a Californian dancer and like loads of other people Jordan Bone and she's a UK based influencer love her and I think following people with following those kind of people kind of made me be like oh I don't need to hide this is this is not ignorance bliss. It's like it was like kind of like exposure therapy if you will yeah and it worked yeah because here we am being someone else's exposure therapy.

SPEAKER_00 8:38

There you go. That's how we're here peeps. As much as finding our own community as an adult was amazing one thing that I still wasn't prepared for was still having low days yes like I thought I would have a few years of like discovering who I was growth and like I'd be completely found in myself like I wouldn't feel awful anymore I wouldn't cry about my hair anymore I wouldn't miss my hair anymore when actually like you still do because it's you still see people that don't look like you and don't have the same lifestyle as you and it's not that you see what you can't do but you just see I don't know it's just like a different perspective of things and it's so it's just to be authentic as much as everything's so beautiful when you find your group and your community there are also times where you can't relate that community it's like and that's it's hard to be confident all the time and it's hard to you know feel like you are okay with how you are because there's so much going on in the world you just go back to and I think as great as that community is and any community is it goes back to what we were talking about a few episodes ago where it's like people only show you certain what they want to show you and you don't necessarily see um the down days of people even if they have alopecia even they if they have a physical disability whatever that may be you don't see that so you think oh this person with alopecia for example is living their best life because that's all you get to see whereas it's I'm sat here crying my eyes out over whatever. Does that make sense? Yeah and it's like I feel like it happens with everyone. Yeah definitely because like we're we all compare ourselves to other people naturally because we all want to grow and to succeed and have bigger bigger better things so we we all compare and I think it's the finding the the comparison bit is just compare yourself to who you were yesterday rather than other people.

SPEAKER_01 10:40

And I think because especially hits a nerve for people with a different slash disability is because it's something that we can't like your disability is something you ultimately can't change and yeah like regular people compare themselves like everyone compares themselves but it's sometimes things that you can change and I think where it hits the nerve for me is is it hits a nerve wherever my disability hits. So I'm like I obviously can't change it. So that's why I'm like right right now as you as you're listening I am actually having a really down mental health time and I'm not gonna get into it too much but I'm just saying like it's normal to be to do that and I'm actually taking the social media detox taking my own advice from episode in feb social media detox is always needed digital detox whatever you want to call it so if you do need it take it and yeah I don't know how I digress that but I just to say like when it hits a nerve it hits a nerve especially when it comes to difference slash disability.

SPEAKER_00 11:50

Yeah and I think it's also it feels more primal because you think that when you grow up you won't be you won't feel the same you did as a kid about your different disability you you think that oh I'll get over it but you didn't never kind of get over it. You just kind of learn to grow with it.

SPEAKER_01 12:07

And I think the way sometimes I look at it which might be like whoa is it's like grief um and it's grief in the sense that like people say grief has different stages and one minute you're okay one minute you're in bits and all that jazz and I think it's grief in the sense that for me personally I grieve for the life I could have had. And I think this is specifically more hard I can appreciate this is especially harder for someone who's had a life without a disability or a difference and then it's come out come on later on in life as opposed to someone like me who's had that disability all their life and I think that's where I'm kind of confused with these feelings because I'm like I should be used to it by now but I'm not like for the most part I am but sometimes like for example this week I'm not and I think that's what yeah that's how I would describe living with a disability is like like grief sometimes.

SPEAKER_00 13:08

Yeah it's like well in terms of grief I definitely had to like grieve my hair because it wasn't like a different person it was still me but hair is a massive part of someone's identity like when you take that away it's almost like how do I frame my face yeah what c what style can I do today? What colour do I dye it to what haircut regular things that most people wouldn't think about. Yeah it's like like stereotypically if you are walking behind someone you can recognise them from the back of their head due to how their hair is yeah stereotypically stereotypically you can that's what people say it's like when you take that away you know like I get like I had someone a few years ago mistake me I was in Newcastle and they mistook they mistaked me I can't think of like the past head the past mistucked it's not that mistaken that they had mistaken me for another bold influencer but I just like went along with it I was like yeah that's that's me because I was like I just didn't know what to say because I didn't want them to be embarrassed for like yeah getting it wrong. Did you at least know who the influencer was yeah that is so because there's a Newcastle influencer Danny Ginny where Dominique said we're watching your YouTube videos to be fair at that point I did have YouTube videos out and I was like oh thank you and they went yeah and the one where you did you did some sort of makeup and I was like so much okay but I was like hi yeah like okay it's a fair caught me off guard because no one's ever said that before like recognised me not in my own hometown. So I was like okay but that that is just so prevalent how I had to grieve my hair when it fell out like because I wasn't that person with hair anymore. And I think there was like dance shows and things growing up learnt myself and taught myself to ignore the makeup and hair conversations that would happen like the day before a show like our hair's gonna be like this and our makeup's gonna be like this I would honestly like zone out when they would talk about hair like I did it through my masters and it's like I I ended up like not pulling a face but like actively like disengaging from the conversation. Yeah and like I didn't realise I was doing it but it was almost like to protect myself and not have to listen to what I should be doing. Yeah but I can't do it strange. Yeah I put it together I think grief you almost grieve what you didn't think you like grief is is massive.

SPEAKER_01 15:38

Yeah it's it's a lot of something and going back to Chelsea Hill who I said I follow she I say I was gonna say recently but I think she's been a mum for like three four years now I think her child is like four five and she was saying how she grieves the mother she could have been and honestly that really hit her with me obviously I'm not a mother yet but I like it made me see my disability in a different way that I'd never obviously I would get to it when I eventually become a mother if I ever become one but I just never thought of it like that so she was like having to think about accessible playgrounds and things like that because obviously you want to be in control when you take your child to places like that. You don't want to go to an inaccessible place and risk things happening because you just physically can't do X, Y, and Z.

SPEAKER_00 16:31

And I just I think that that was really and I think it's important this is why it's important to follow people like that because it they make you normalise your thoughts and feelings yeah and yeah because every time to be fair if ever I'm having a low day or like feeling that grief again which isn't that regular normally I just have the low days rather than the hair because I just I generally can't remember how hair feels until I've got like a wig on and I'm like oh I'm hot. Yeah take it off warm but especially at the moment but I go back to like my old post and like watch what I've been through kind of like see my journey and take my own inspiration from that. Oh like sweet sweet think of your journey and how far you've gone thousand percent and so yeah and if you're thinking you guys look slightly different if we sound different yeah the camera said it's a heat wave I'm gone see you later the camera overheated basically yeah so actually side two side note if anyone does have like a go-to like vloggy camera or filming camera hit me up that would be great to know and for the rest of us let's get back now back into it caught back clock back in it yes so as I was saying I think one aspect of my life that I didn't think I'd be grieving about but I am because at the stage of my life that I am in now I am thinking about it and it is navigating romantic relationships and growing up like I was very naive into how that would look like and now that I'm in it it doesn't quite match up.

SPEAKER_01 18:14

Not the light yeah I'm not saying it's bad I'm not saying um I was gonna say not saying I wouldn't want it differently but yeah I do. Let's be real navigating I think I feel like navigating relationships as an able bodied person is much more easier than if you were to have a physical disability slash difference. And yeah so in the relationship side of things it also makes me feel like I'm agreeing a relationship that I could have had in a weird way. Not the same yeah and I've always said like I don't have any bugs in life and I don't I'm very much a confident person I'm very much happy as I am but if there was a scenario where I could change how things are it would be when it comes to relationships.

SPEAKER_00 19:06

Yeah I think as well navigating it anyway when you're older it's completely different to what you spoke in as a child you know and so like even for me with a difference like my whole thing was like how can someone love me without my wig and then also thinking how can someone else love me without the wig when I don't even love myself at that point.

SPEAKER_01 19:24

Yeah.

SPEAKER_00 19:25

So I think it was like trying to learn that it is true you do need to love yourself and love your growth and what you're gonna get into before meeting someone or just be open that when you do meet someone that they're also finding love for the first time as well.

SPEAKER_01 19:42

And I think it's also true that you say like you're like if I'm not loving myself in this in this particular time how can someone else and I think for me what kind of is on the back of my head constantly is like how we said our experience with our disabilities our difference is not linear and it's like grief. So I'm like what if like like the way I feel about my disability some days that person's also gonna feel like that with it. Does that make sense?

SPEAKER_00 20:08

I get that yeah but I feel like the other person will just take on the frustrations that you have and feel it with you. But you don't where are you? Because if that's you only because I feel like especially in this day and age people look for a partner they can also call their best friend. Yeah and so I think that it's like being in like a seven and a half year relationship with my partner I found that my confidence and opinion towards my own alopecia has changed in a more positive way through meeting him and through seeing his side of things. Could you almost get out of your own head sometimes interesting so maybe that is a future output we need to get into like an update of dating.

SPEAKER_01 20:52

I mean it is spoiler alert it is non-existent in my life right now but never say never never ever say never never ever say never very like never ever say ever say ever say never oh my god but no I think I just yeah it's this is one of those I think this episode is coming at a great time because my headspace right now is very negative especially when it comes to things like that. Yeah so I'm probably looking at it as a glass half empty yeah kind of perspective rather than glass half full where I usually I hope you can see from these episodes that I am a very glass awful person but right this way that's not how I feel.

SPEAKER_00 21:36

And that's okay that's normal yeah I think just to move on slightly one thing as an adult that I was not prepared for that I've only recently actually understood is how inaccessible the world actually is thank you because just from going out with you a lot more from like just just to coffee and like to trips to step up into your coffee Shop and I'm like, okay, so we can't order coffee. Like the ramp, the ramp is broken. Okay. There's no toilets. There's no toilets. Um, so you have this is this is what got me. We went out for breakfast, brunch, the other week for my birthday, and did you know it was my birthday for it so many times? And um basically I actually eat text them on Instagram, DM them, said, is your venue accessible?

SPEAKER_01 22:25

Oh, I didn't know that.

SPEAKER_00 22:26

And they said, Yeah, it is, both venues are. I was like, great, because I was literally screwed, like like zooming in on Google Maps.

SPEAKER_01 22:33

Story of my life. You shouldn't have to do that. No, even though if you didn't know, there is an about page on there is an about section on Google wherever you search somewhere that has that section of like is it accessible, is it not? But not every business fills that in, which I think it should be mandatory.

SPEAKER_00 22:52

Yeah, I agree. But DM them saying, Are you accessible? Yeah, we're accessible, great, we go. It was lovely food, wasn't it? Like coffee was lovely. Absolutely loved it. So nice. I went to the loom. TMI, I guess. Probably should make sense, yeah. And then as I'm walking back, I'm just like, oh, Sarah might want to go to the toilet. And I'm like, I don't see one because I've had to go down the stairs to go to the toilet. And so I'm like, just curious, like, do you have an accessible toilet here? And she goes, No, we don't. I'm I'm really sorry. And she was like shocked that I'd asked the question, but also shocked herself that she couldn't give me an answer. Yeah. And then I was like, okay, do you know where the closest one is then? Couldn't tell me. Five dozen. Like they were really questioning that. And then I said, Maybe it's the spoons, because I know there is one in spoons. But then it made me realise that the we the girls I was talking to, they were doing their job perfectly. I was quizzing them, grilling them, but I was nice about it. I wasn't like this is your fault. Like, I wasn't like, because I didn't know what they're gonna do. Exactly. I just wanted to some information, but what I found from that is that they couldn't tell me where the accessible toilet was.

SPEAKER_01 24:02

I'm sorry, why is that not part of building my good nature?

SPEAKER_00 24:05

And it's like even within that complex we were in, it was attached to multiple different venues and different like hospitality points and things. No clue.

SPEAKER_01 24:14

And what kind of makes me like, oh yeah, that's fine, is because this particular place wasn't a chain. Whereas I had a very similar experience, if not even worse, with a chain. And I was debating whether I wanted to talk about this. I mean, I've already talked about this on my Instagram and on my TikTok because this happened actually about a year ago now. Wow. I think that's how long they've been open. But Joe and the juice. If you haven't heard of them, they're a cafe that serves juices and coffees and paninis and all that. And they're great, I'm not gonna lie. The concept is great, the paninis are great. What isn't great is how inaccessible the Manchester brand chains. I'm just gonna say it. So I was excited to go in, and when they opened, I grabbed my sister, I was like, come on, let's go. It was like 5 pm or something after work, all that jazz. Go in, and there's a massive step, and it's one of those steps where like you can't just like you know, if you're a wheelchair user, you just kind of like wheelie on. It's you could not wheelie, like you'd be flipping backwards if you tried anything like that. So I was like, Oh, okay, get a ramp then. So my sister goes in and she's like, Oh yeah, my sister's trying to come in, like can we do something? And then the waiter just looks at her and she goes, sorry, she can't come in. And I'm like, What what do you mean I cannot come in? Like, what on earth? Not being like, oh, we'll help her, oh we've got a ramp, yeah, like we'll make some arrangements. Oh my gosh, we're so sorry, we've been so busy, we've not thought about that. And my sister was like, Okay, and we just walked off anyway. So I DM'd them on Instagram, very long-winded, explaining the situation, being like, sort it out. The email, literally, not a word of apology. I still have it by the way. Yeah, I could read it out. Receipts. I actually don't know. Shall I find out? So hello, I kept it very profile. But hello, hopefully, you see this message. I wanted to DM as a few weeks ago I went to the Joe and the Juice, Manchester Ranch, and I was really disappointed. I noticed there are large steps at this entrance, even though other shops in the same street on the same row have step-free entrances. Case in point, boots. As a wheelchair user, this isn't the first time I have this, I have come across such issues, but the way that this was dealt with is my main concern. I was with another person and they went in to explain that I'm outside and to ask how I can come in and if there was another way for me to get in. Other entrance or ramp they could provide, etc. The staff in a non-apologetic manner just said, no, she can't get in, sorry, and went back to what task she was doing. As I said before, this is very disappointing, not to mention, in breach of many building and business laws. I actually checked with someone before doing that, by the way. So don't come at me being like, don't you know? I've checked, and this is true. Before reaching out to the council, I did want to contact you directly to see if this would be resolved. Spoiler alert, council did nothing. So they responded um two days later, being like, Hi Zara, thank you for reaching out. We now have a ramp at the store that can be accessed when needed. Kindly asked the team in store or use the accessibility doorbell for entry for assistance with this. Right. There's so many things wrong with this process. Number one, where is the apology? Wait, what's for an apology? No, not that we're sorry about you for explaining. Thank you for reaching out, that was it. As if I'm asking for a coupon. Yeah. Thank you for reaching out.

SPEAKER_00 28:17

You're asking for a discount, no?

SPEAKER_01 28:19

No. Because here's what's wrong. Ask the staff. I'm sorry, what am I meant to do? Oh yeah. Get out of my chair. Go in. Oh, sorry, I'm coming in with my chair. Can you come and help? What do you mean? Ask the staff. And I know there's a bell, but when you're busy, when there's like six thousand different people in the queue, no, I can guarantee you, no one is gonna give two. Two shoots.

SPEAKER_00 28:50

Hoots and two hoots. Two hoots about that goddamn bell. And also the there's like a disability influencer avocado online. She actually went around her hometown and tested the bells. And there were some places she didn't get any response. People were walking in, um, nothing. Yeah. So you can't rely on the bells.

SPEAKER_01 29:10

I actually, after that, I actually emailed them because I was like, this is still not good enough. No. And you know what happened in the end? They gave me a voucher for a fruit drink. Wow. I didn't actually end up using it because I am putting on myself, just me, myself, and I am boycotting Joan of the Juice. Yeah.

SPEAKER_00 29:30

I've actually never been in there.

SPEAKER_01 29:32

To be fair, there is one in Travis Centre that is actually shock horror accessible.

SPEAKER_00 29:38

Wow.

SPEAKER_01 29:38

But I've not been. Maybe they built that after. They have. Oh wonderful. They have. And I just think it's not that hard. And I I think for me, what is is that I don't want to go in, press that bell, nothing happens, and everyone looks at me like poor little damsel in distress. I'm not doing that. So yeah. So Joe and the juice, do better. Thank you for coming to our TED Talk. I feel like we rambled on.

SPEAKER_00 30:09

But to end on a high, I think one thing that I did not prepare myself going forward as an adult is that I would actually accept my alopecia one day. Being a child, I wasn't prepared for actually being bald. Like I didn't think that would ever be a day where I would be happy walking out of the house like this. Pointing to myself, right? Like, didn't think.

SPEAKER_01 30:33

I think this is the point where we're like go delusional. But to kind of add to that, kind of again, it might just be the headspace I'm in right now, but I think growing up I kind of didn't see my disability, and now that I see it, I'm like, I wish I kind of didn't see it.

SPEAKER_00 30:51

Yeah. Does that make sense? I feel like it's not you that's seen it, it's the world that's made it.

SPEAKER_01 30:55

Yeah, I think yeah, exactly that. I think it's the way like I wish I could go back to younger me where the wor where I didn't know how the world sees it.

SPEAKER_00 31:07

Yeah.

SPEAKER_01 31:07

Am I making sense?

SPEAKER_00 31:08

Like you didn't you it's wish I also agree with this, and I'll explain it in a way where we all understand.

SPEAKER_01 31:14

In a sense that sorry, wait, you're gonna know we're not brushing past that.

SPEAKER_00 31:20

We are not but in a sense that I wish I could go back to a time where I didn't know people's judgments and assumptions about the way I looked. Okay, I hate to admit it, but that actually was exactly what I was trying to say. I know. To end on the actual positive though, um sorry, I feel like the more I go through my adult life, the more people I actually come across that I can relate to, resonate with, and just meet more people. I've had so many experiences with the cards that I've been dealt. Yeah, you know, with my with my difference.

SPEAKER_01 31:52

Yeah, and I think word of advice, this is gonna sound tough lovey, but word of advice, chances are your disability, your difference isn't gonna change.

SPEAKER_00 32:02

So just learn to live with it. Yeah, toughen up more now. The one thing that can change is the way that you see it yourself.

SPEAKER_01 32:11

Yes, okay, I'm sorry. You're time now.

unknown 32:14

I need to go.

SPEAKER_01 32:16

I think it's because I'm in that glass half empty, so I can't be the nice lovey dovey chewy coaty person, but you are that in this episode. But anyway, come back for next week's pod and um see you then.

SPEAKER_00 32:31

We'll see you then. Bye.