Adult women don't want 'Daddy's little princess' written on their T-shirts
Influencer Sinead Burke talks to Ouch about fashion and equality
Sinead Burke is all about fashion and equality and in September appeared on the front cover of British Vogue.
At three and a half feet tall, she is a fair few notches below average height and describes herself as a "little person".
Find out what happens when you are too short to be able to reach up and lock the toilet door behind you? Or what if the most fashionable choice of clothes you have are in the children's department and have "Daddy's Little Princess" written on them?
In this month's Ouch podcast from the Â鶹ԼÅÄ, Sinead explains how she has used people's interest in fashion to shine a light on inclusive design in public spaces and equality generally and how it has led to other opportunities and the launch of her own podcast.
Inspiration is a hideously over-used word when talking about disabled people but I think we can safely say this is a genuinely uplifting listen which gives plenty of great ideas, different ways of looking at life and, if you are disabled, it may well stoke your self esteem a little.
One of the hosts of our programme, Simon Minty, is also a little person which lets us dive deep into areas most interviewers wouldnt' think to ask which also brings plenty of wicked humour.
With Kate Monaghan and Simon Minty
Ouch is on Â鶹ԼÅÄ Sounds and available on your smart speaker by yelling "ask the Â鶹ԼÅÄ for Ouch".
Transcript: Adult women don't want 'Daddy's little princess' written on their T-shirts
SIMON - If you haven't worked out how this podcast feed works, well actually there's a long show from Kate and I at the start of each month. This is the full on, chatty, round table show with lots of guests chatting to each other and sharing all of that kind of stuff. And then during the rest of the month you get shorter podcasts which are done by other members of the Ouch team like Niamh, Beth, Emma and Damon. KATE - Right, housekeeping done, it's time to get back to our interview with Sinead. [music]SIMON - You did that amazing TED Talk and you were talking about going through an airport and the accessibility of that. As well as fashion it's…KATE - I mean, the whole TED Talk was about design and the design and inclusivity of design of the world around us.SIMON - So in terms of design, what are you looking for?SINEAD - I'm looking for accessibility as a starting point, rather than something that is legislatively only necessary when everything else has been done and completed and where there's a checklist.KATE - There was a real audible sigh there, Sinead. SINEAD - I know.KATE - It was like oh, I'm still looking for inclusivity to be the starting point. SINEAD - I think we all are. I think what I want is a real understanding that how we design spaces is symbolic and is explicit of who we allow into certain spaces. In the TED Talk I spoke about my challenges within public bathrooms, and the design of public bathrooms are not just limiting for disabled people, but also for the trans community, and if we don't design bathrooms in public spaces that are inclusive to lots of different types of bodies and people we are literally telling people that you don't get to be here, or if you do it's limited.KATE - So what are the problems with bathrooms for you short people, you and Simon here?SIMON - All right!SINEAD - For me, I imagine gender plays into this differently, but for me it's in terms of the cubicle and the height of the lock on the door and not being able to reach that. It's then climbing up onto the toilet. Depending on how old or new the toilet is, it's reaching the flush. It's then coming out to the sink and not being able to reach the sink or the taps or the soap. And then the hand dryer is more like a hair blow dry rather than a hand dryer. And it's just not something that inculcates any sort of dignity.KATE - So if you can't reach the lock on the toilet have you had many an embarrassing moment when people are…?SINEAD - Yeah, or it's like approaching strangers and saying, "Hi, my name is Sinead, I'm really sorry to bother you, I really need to go to the bathroom, is there any possibility that you would mind standing outside and just making sure that somebody doesn't come in?"KATE - And don't listen too closely.SINEAD - Well, yeah. SIMON - Well there's a lot of vulnerability in that. You're a stranger, you're telling them what you're going to do. There's a lot going on in just that simple request. SINEAD - Yeah, it's like impinging.KATE - Do you have that problem, as a male?SIMON - Well, I don't think people truly get it, because the bit that you've got to imagine is you go into a bathroom or a toilet stall, it is at your eye level. So everything you do you're putting your hands right high up. And I don't think people get it because they just can't get the concept of… My recycling bins are above my head so everything I put in has to go over my head. I was in the train and I was using the bathroom and the hand dryer, the soap and the water were all in the same bowl. I washed my hands in the water, pressed the dryer, and it blew all the water straight into my face. Now half of me laughed but the other half… If you imagine every time you wash your hands the sink is at your mouth level, or even maybe different for Sinead.KATE - Yeah, it's kind of gross isn't it?SIMON - Well, it's not only gross, it's impossible. It's really difficult, and you're talking about an accessible bathroom that's still not accessible for you, Sinead.SINEAD - And my argument then is, you know, whatever about the sink being out of my reach or being at my head height, right, I understand that in terms of dwarfism one in every 30,000, 25,000 to 30,000 people are born with dwarfism, and with an ageing population with an ageing parent population, we are only going to see an increase in the numbers of that. But it's still rare. So I can understand sometimes from a business or from a government legislative perspective why they're unwilling to legislate design standards for people like me. However…KATE - I thought there was going to be a but coming. [laughter] SINEAD - We live in a world with children, and by not designing public bathrooms, and particularly sinks, at the height at which children exist, which would also include me and perhaps wheelchair users and different people with disabilities, we are telling children also that they are not valid. And yet we all were children and that model of ecology will continue to exist. So why have we not designed for them?SIMON - I've got a couple of questions. One, which is I agree with your principle, and I think it's a good argument. The problem with that is that you and I are going to end up in the kid's bathroom, and I do not want that, and I don't want to be having a…SINEAD - I think it should be mainstream, I think there should be one low sink next to three average sized sinks.SIMON - They all should be there. Got you. Working with lots of organisations around the world, they say we're inclusive but we know they're not necessarily. What they will say is give me the regs, give me the codes, I'll do it. Don't do the whole, oh I wish the world was better, and we should all be happy and holding hands, they're not that bothered about that, just tell me what the rules are and I'll do them. Are you slightly resistant to that, you want them to be doing it a bit more willingly?SINEAD - I want everything to change. I want the rules to change. The rules have been designed by people who don't look like me, who are creating documents based on a lived experience that probably only reflects their own, or if they have been thinking inclusively it's usually through a lens of sympathy or a medical model, rather than looking at a kind of empathy and human rights and dignity. And I think that needs to evolve. You know, in terms of legislation what needs to change immediately in every country is the law around protected buildings. SIMON - Yes, so the historical buildings, the listed buildings we call it. there is a lovely bit in America, in America they do change…KATE - No, I want to know how it is at the Met.SIMON - Okay.SINEAD - How it is at the Met?KATE - Yeah, so when you were at the Met did you get to go to the toilet?SIMON - You were carried in by four men with naked torsos. SINEAD - That was Billy Porter, that was Billy Porter. No, and for me I was really deliberate about that in terms of going to the Met, that in the days before I spoke to all of the different parties who were kind of involved in the event and we did an access audit for me. You know, there is an accessible entrance to the Met that's further down the street that is a ramp access, but it's not a red carpet moment. And there haven't been many physically disabled invitees to the Met Gala ever. And in the process I audited the stairs to see if I could manage them independently. I audited the bathrooms and we created access requirements and needs within those spaces, and then also where we were sat for dinner and the kind of dancing afterwards and making sure that there was a footstool in the carpet of the event. But those items are very specific to my access requirements and what I'm really interested in now is, is having broader conversations with those teams that it's more than just me.KATE - So you had to go and do it yourself? You had to check it all out before that evening?SINEAD - Yeah, I also wanted to. You know, I could have left it to others to do it on my behalf, but nobody knows what I need more than I do. And being part of that process was really important to me personally. SIMON - I mean, really you want it that you just rock up and be cool and fabulous and wear the clothes and do the stuff like everybody else.KATE - We all want that don't we? Isn't that what we're all aiming for, that we never have to think about, never have to think about it in advance?SINEAD - That's what we're all fighting for, right? We're also living with a real sense of reality that that might not be for us. But the reason why I work so ferociously hard is that I don't want that for others. That I have the resilience, the support system, the education and probably the patience from my background of being a primary school teacher to be able to facilitate this learning for those who don't know what we're talking about or don't understand the importance of it. And those skills are useful in terms of creating that change. But I don't want others who are now ten or 16 having to still have these conversations in ten years.KATE - I just hate the amount of people that I know who will go to an event and they will not drink, either for an hour or two before and then during, and I don't mean alcohol…SIMON - Because they can't, yeah.KATE - I mean any fluids because they can't use the bathroom, and you're just too worried about what will happen if I go to the bathroom. So you just think to yourself, you know what, it's just not worth it, I'm not going to do it.SINEAD - I'm just not going to go.KATE - That's wheelchair users, that's short people, that's people who have to catheterise because they don't know what the…SINEAD - It's the trans community, it's a non binary bathroom.KATE - Yes, it could be the trans community, exactly. So it's like you're doing yourself damage simply because the environment around you is not set up for so many reasons.SIMON - The other thing you said about the things that you have, which you have all of those in abundance, the other thing I think that you have which makes me feel slightly annoyed is you have youth. At 29…SINEAD - I'm getting old, Simon. I'm starting to creak.SIMON - 29 year olds always say that. KATE - How old are you, Simon? 70?SINEAD - Ha, ha, ha.KATE - Simon's such an old man. [puts on wobbly voice] 29.SIMON - No, I'm really happy because it's about the next generation and what is it that you want and what do you expect and what are you going to push for. And lots of people don't do that, a lot of people just take it for granted. You're doing that, but you do have that energy because you have youth, but I also think you've done a huge amount. Do you have to pinch yourself and go, oh my goodness me, I'm 29 and look what I'm doing and who I'm hanging out with. SINEAD - But I'm also really cognisant of the fact that the industry or the world is listening to these concerns right now. And I'm very much aware looking at the past trajectory of how we've evolved as a world that they may not always be listening, that this may be a moment. And what can you do within this time frame to try to instil changes and thinking and methodologies that are actually sustainable and will just become part of our process.But I'm also realising that at 29 I may have the physical ability to be able to go on a plane four times a week, or to be able to go into a room full of CEOs and say this is what I need. I may not be able to do that in five years. So doing it now while I can and then retire to wherever it is I might retire to.SIMON - You're under a lot of pressure. You're saying I've got a window, whether that's who's going to listen to me. I've got a window in terms of my physicality. Do you sleep all right? Does that put you under immense stress?SINEAD - Well, you see I don't drink alcohol and I don't smoke, which I think helps. KATE - Maybe that's where you went wrong, Simon. But then I think being a woman we're also in, and I don't want to speak for anybody other than myself, but I don't know if I want to have children going forward. I don't know if that's something that I do want and I don't know if it's something that I don't want, but there's a biological clock ticking there too. So it's all of these things. I think we're constantly in this race against the proverbial clock.SIMON - Yes, but you're in a unique one. You're in a particularly unique kind of direction of travel that is phenomenal and I just… Are you grabbing every moment saying I've got to do this, or do you ever cut yourself some slack? Do you kind of go, you know what, I don't have to do everything. SINEAD - I'm very specific about what it is that I do. I have kind of four guiding questions that really help me build a moral compass in the work that I do, because I think that it's sometimes easy when you're in rooms of great influence and when you're wearing beautiful clothes to be complacent.KATE - No, I was saying this just to Simon. Just earlier today I said there's three questions that govern what I decide to do.SIMON - Oh, you did.SINEAD - Go on, tell me.KATE - No, no, no, I want to hear yours first. Let's see how they compare. You know, as a woman of great influence myself, you know. SINEAD - Of course. You certainly are. I'm being incredibly sincere. SIMON - Actually, all three of us didn't make the Power 100 list of disabled people. Still banging on about that. [laughter] None of us made it, and yet you made the most powerful 100 people in the UK or whatever.KATE - No, Sinead was 100 Most Powerful Women in the World. SIMON - Ever.KATE - Yes. Well, maybe that are alive. SIMON - Okay, okay.KATE - Sorry, Sinead. Your four questions, tell me. SIMON - Yes, what are your four questions?SINEAD - I'm not participating in that conversation. My four questions. The overall guiding one which is not one of the four, but the overall guiding one is what's the purpose, or what's the point? And then the four kind of pillar questions are: Does this fulfil my goals and dreams? Does this pay the rent? Does this give back? And does this bring other people with me? And everything that I do and any project has to say yes to more than one of those things, and that really helps me move forward in a hopefully positive way. And whilst also making sure that within that you're not being exploited or being useful and being a pawn to different agendas. But that really helps me move forward with momentum. And it also gives me a real ability to say no.SIMON - I'm going to come back to your pawn bit. And what are your three then, Kate, as another woman of influence?KATE - Mine are, it's very, very similar actually: Is it enjoyable? Does it have purpose? And will it make me money? So will it pay the rent basically is a nicer way of putting it than will it make me money. So it's those three, and I will say to myself unless there's a desperate need for me to make money or just enjoy myself simply or the purpose is overriding, it has to tick two of the three boxes. And if it ticks none or one then you have to really think about what we're doing. SIMON - And, Sinead, that bit about the pawn and you being very conscious of that, and I suppose we're very conscious of short people or other disabled people, that am I being used tokenistically, or am I used for credibility. I don't want you to name names, and you seem very sure footed, but once or twice have you thought, oh…?SINEAD - Did you say short footed? How rude. [laughter]SIMON - Sure footed. Sensitive. Have you kind of thought, oh I feel I've got in the wrong space, once or…?SINEAD - Yeah, I think there's all moments, not necessarily that you regret, but you had the best of intention. And I think we're living in a world where people feel like they're being policed and need to make only good decisions all the time and that there's no space for learning and there's no space for mistakes. And I'm very conscious that I think with a background in education, you know, we need to create space for people to make mistakes and to learn. And there are definitely rooms that I've been in, I'm like, this isn't what I thought it was. But for me, I come from a sort of socially constructive perspective with all things, and I'm like, okay, well how can this be useful? What's within this that I can either learn from or take from? Or what would I not do again? What do I need to be alert to? And that kind of helps me, even when those guiding questions don't guide you to the right place. [music]KATE - Now, coming up is a bit I really enjoyed about clothes for short men and short women, and a lot of people, myself included, would assume that you could just wander into the kid's section of Zara or H&M or other high street stuff and like buy your clothes in there, and that that's a problem. And there's a difference, that you can't do it for girls because of the choices that people make for girl's clothing, but also it's not the same for short men is it?SIMON - She's saying the girl's clothing is about sparkly pink things. And I hadn't realised, because she's saying for young boys it is chinos and shirts and I mean, there is Spiderman and there's a lot of Marvel comics and there's a whole load of imagery.KATE - But you're wearing a Spiderman jumper right now aren't you?SIMON - No, I'm not. This is a… But her point, what she's kind of saying is as an adult woman who wears that size it doesn't work for her. It's a bit of a mix, but I think it might be tougher if you're a woman. KATE - Well, let's dip back into the final bit of the podcast to find out. [music]KATE - Now listen, we have to talk about fashion, obviously, because it's you, so we have to talk about fashion. But before we do that I need to talk about your podcast because we are just sitting here blathering away and could do for hours, I swear. But I managed to listen to a couple and they are amazing, and the A list guests you get are just wow. But one recently is where you're talking to actor, Jamie Lee Curtis, and we've got a clip from this one. She's speaking in depth about being an artist. And having listened to it I just think there's a lot of what she says that she could be talking directly to disabled here. So let's have a listen. [clip] Jamie Lee Curtis: The only tragedy of my death, because everybody's gonna die, nobody gets out alive, so we're all gonna die, the only tragedy would be the ideas in my head that I didn't bring out into the world before I died. That the ideas in me that died with me is the tragedy. The creativity that dies with an artist is a tragedy. And to me, it's not about the judgment. It's not about… it's not about the external response to the art. It is bring ideas in your head out. And that's when I started calling myself an artist, because I've done enough that I've started to go, oh, I have ideas.SIMON - I love the bit she gives herself permission to call herself an artist. I suppose the bit you can take as a person who's disabled, which is we do have ideas, we do have thoughts, and the injustice is we don't get them out. Do you feel you're getting your ideas out, Sinead?SINEAD - I had a meeting this morning with somebody who works for a really big technology company, and the question she asked me was do you have ideas? And I was like, yes! And I think, as disabled people, we view the world through a different lens. We have to almost hack and destabilise the built environment in order to have independence. And with that comes ideas of how things could and should be better, and whether that's just physical or whether that's socially. And I think what we need to do is really give confidence to disabled people about the validity of their experience and their ideas, and whilst it may not come from qualifications of Ivy League universities and colleges it is as relevant as anything else. And I think the hardest part is creating the space in the rooms where those ideas can then be transformed into action, because in order to actually make an idea a reality you need resources and possible power. Not always, but sometimes. KATE - But you're in a place where you're tapping into that now.SINEAD - Yeah, I irritate people for a living. [laughter]SIMON - But I am thinking of the pure artist bit. Someone with a disability can still write. There are ways to get their message out. There are platforms to do this now. It's probably the easiest time that that's the stuff you can do, and then you've got to pick up and see whether people are interested. I think one of your criteria were will people follow me? That's part of it, but…SINEAD - Yeah. Well my career only exists because I started a fashion blog ten years ago, because I live in a small town in Ireland and was really interested in fashion as a vehicle for identity, and as an industry that could stand for equality and accessibility and kind of human rights in a really tangible way. SIMON - You may have alluded to it, Sinead, and it's almost like a pep talk, but people with disabilities, we might have lost the confidence, we might not think our ideas are appealing, how did you have that gumption to go yes, I'm going to keep going? And what would your advice be to someone who's got these ideas or creativity and they're nervous, they're hesitant?SINEAD - I have amazing parents, and an amazing family unit, and from the earliest of ages on my first day of school I expressed an interest of wanting to be a teacher. And they were incredibly positive in my ability to do so, though looking back now I don't doubt that they were nervous, not necessarily that I wouldn't be a good teacher but that the world might not let me. And having that family unit that cultivated my ambition, and I have always been deeply ambitious and I think for disabled people, like be ambitious. And in terms of the way in which I work, not all of my ideas are good, not everything comes to fruition, but for me like the power of asking for things kindly or the power of questioning things, you know, I continuously ask why in terms of things that exist or ideas. And for me the answer is always no, until you ask. So why not?KATE - And is that what you did with, I don't know who it was, but I heard a story about you, you just sort of walked up to somebody in fashion, I don't know if it was Anna Wintour or somebody and you just made them talk to you basically. SINEAD - I do to everybody.KATE - Do you really? SINEAD - Yeah. I was sat next to Edward Enninful, the Editor in Chief of British Vogue at a Burberry show about two years ago, and I tugged on the sleeve of his jacket and told him what it was that I was trying to do in disability and fashion and I gave him my card and said, "We should meet for a coffee," and we did and then I ended up on the cover of the September issue of British Vogue. SIMON - And so the cynics will go, "Yeah, but you were there," but what you also did was take your opportunity. That's the other bit. I think we do get opportunities but we've got to grab it. The moment you've got it, if you let it pass by, so it's one, it's getting the opportunity and it's two, having the gumption to take it.SINEAD - Yeah, and it's also that for me, I've spent a lot of my life reaching out to people that I admire and I'm impressed by, and doing it kindly, and asking them for their time if it's a coffee or if it's just like a skype call or a phone call. And people are, for the most part, incredibly kind and will give you their time. Because I think I have got to the position I have based on other people's kindness, so it's my responsibility now to reflect that on others who need or want my time. And trying to measure that is important.KATE - But do you not get imposter syndrome thinking why should they talk to me, why should they listen to me? What am I doing here, this is crazy?SINEAD - A lot of the time, yeah, but then it's that piece as well that if people who I admire see something in me that means I deserve to be in that room then the least I can do is believe in myself, even a fraction of how they believe in me. Because opportunities are not given needlessly, particularly when you're disabled. SIMON - We are going to go back to your podcast. We have another clip. This is from your conversation with Riz Ahmed. He's a British Pakistani actor and rapper and he's talking, perhaps slightly depressingly about his identity, and yours too, Sinead. Here it is. [clip]  Riz Ahmed: My reality, living in this body, just like your reality, living in that body in a totally different way, is inherently political in some people's eyes. But if by political they mean provocative to talk about, if by political they mean something that is usually airbrushed out of our stories and our commentary, then yeah, it is political. But I don't think there's anything inherently political about…Sinead: Wanting to be. Riz: Yeah. Sinead: And yet it's made to seem that way.KATE - So is that what we are? We're in our disabled bodies? We're just fleshy, political points? I don't know. [laughter]SINEAD - I think I'm really interested in this notion of the personal as political and vice versa, you know. I think we're particularly living in an era here in the United States where there's about to be an election in 2020, Brexit is unfolding in the UK, and whether or not there's going to be a general election in Ireland coming up, but we have all of this notion of people saying, "You know, I'm not interested in politics." The two things that you can't discuss are religion and politics in kind of polite company. And for me politics isn't just about policies that are being written, but being a disabled person and living in a disabled body is political. And I don't think that's the only reason in which we get to exist, but the personal is political and you're shaped by that. And for me in terms of speaking with Riz it was really interesting that for me the whole premise of the show is that so much of what we feel isolated by we think is unique and individual. And for me it's been really illuminating to sit with somebody like Riz to realise that how I experience my body in the world, whilst it's not the same as somebody who is British Pakistani, there are connections there, and what I'm really interested in the focus of these conversations is like what happens when we listen to these and realise that actually what divides us is probably also what unites us and then what's the potential. SIMON - I'm glad you said that because occasionally I do feel we're disparate and we're almost kind of you can't understand me and I can't understand you, and there's more that we have in common. We want to get to fashion. I texted Kate last night and said, "Who are you wearing tomorrow?" because that's what you do. She said, "I have my child's poo on me right now." KATE - I did, it's true. I was covered in it. SINEAD - Fabulous. There's been a lot of toilet talk in this conversation.KATE - Welcome to the Ouch podcast. SIMON - As you said, you peaked. I have my snake print jeans on just in your honour. So I'm a short person, I understand it, but you have…KATE - No, no, no, I want to know, you said what I was wearing last night, which was poop, you're wearing snake skin jeans, which are quite fancy. What are you wearing right now, Sinead?SINEAD - I'm wearing a pair of black high waisted jeans, a blue cashmere jumper and a pair of sneakers and a leather jacket.SIMON - The cashmere jumper, was it made for you or did you buy it and get it altered?SINEAD - No, I bought it, but I got my jeans altered in terms of the leg length and elastication at the back of the waist. My runners are a size 12 in the children's department, and my leather jacket, the sleeves were chopped. SIMON - So the clothes that you have made for you by these fashion houses are remarkable and amazing and that's part of what you have to do. I mean, could there be a criticism saying you want to make this successful but at the moment you're still at top end. When are Zara and Gap and H&M going to get involved? And is there a business case do you think?SINEAD - Well, maybe if we take it back a step in terms of how my interest in this space came about, because it was very deliberate and very intentional. I am the eldest of five children, I have three sisters and one brother, all of whom are average height, and it was made very clear to me when I would go shopping with my sisters that they had access that I didn't. And I'm not just even talking about the availability of clothes, but going shopping in a physical store was really difficult because I couldn't reach the rail. I was too short for the cash register. I wasn't strong enough to pull the curtain across in a changing room, or to reach the lock on the door if it was a door. And the whole process of going shopping was so awful, despite the fact that we all actually, and I physically needed to wear clothes every day, and yet despite that being a part of a functional aspect of my life it was so different to how my sisters got to experience it.And what I used to do was just never shop for what I wanted but shopped for what was available, and particularly being a woman and particularly fitting in to the children's department in many cases a lot of what was in the offering for me was infantilising. It was T-shirts that said, 'Daddy's little princess', which I mean, has weird connotations in so many ways, and at 25… I mean?KATE - What age were you when you realised that your shopping experience was different from your sisters'?SINEAD - Probably about 16.SIMON - I was going to say.KATE - 16, okay.SINEAD - Yeah, my sisters were 14 at the time and it was really obvious even in terms of the shoes that they could buy that they could even buy shoes with a kitten heel or they could just buy shoes that were more mature, you know. Everything for me was like light up runners, or it was pink shoes with sequins. And even if you look at how the narrative changes for boys and girls in the children's department, boys clothes are deliberately designed to mirror the men's department and they may get cute little chinos or a linen shirt, that just doesn't happen in the girl's department, they are infantilised and they are kind of sickly sweet pink and very kind of feminised in that way and that's what I was kind of caught into.KATE - Yeah, but does that mean that someone like you, Simon, you can go and pick up a pair of jeans in Zara kids for example?SIMON - The difficulty is also my shape. There's double. There's a tummy, which is a bit too big, but also the shape of my body wouldn't fit that anyway. So I mean, children are thin and small in relation to me; I'm more stocky than that. So no, the Zara jeans I've got on I buy and then I get them altered and they could be chopped or tapered or whatever it may well be. KATE - Because you've got achondroplasia, the same as Sinead, which is short limbs? SINEAD - You have achon too? Is that right?SIMON - No, of course I haven't.SINEAD - I have achon.SIMON - You've known me that long and you don't even know the basics?KATE - Yeah. SIMON - Is it MS you've got? [laughter] SED is the shortened version. There's about 10% of the short person community that have mine, so 10%. Sinead's around 40%. Achondroplasia's the more readily available.KATE - Common?SINEAD - Common, I ain't unique. SIMON - There's 200 of us though, or maybe even 300 types. There's lots of them.SINEAD - But for me in terms of my body it's something similar, and then as a woman, if I'm buying a coat or a blouse or a shirt I have a chest. So even buying that in the children's department means that it puckers, or buying a coat, it may be the right length in the arms and in the kind of length of the coat hitting my knees, but it's not functional because it won't close because children's bodies do not look like mine. And then when you go to the adult's department there is just such a huge amount of alterations that are required, that not only is it cost but it's then unsustainable because you're just throwing fabric in the bin and then it's like how do we bring kind of sustainability and accessibility together? KATE - So when I get a pair of trousers I'm a short woman. I'm not a little person but I'm short, so I'm 5' 1", so if I do get a pair of trousers that are too long I just go to my mum and say, "Can you just take them up?" Is that not possible?SIMON - I don't know your mum. [laughter]SINEAD - We'll all visit with bags of clothes. It is, and I have a seamstress who I have worked with since I was four who helps, you know, from altering my school uniform to my clothes that I wear today, today but it's the extra cost that comes within that, so when you're going shopping and you're looking at a garment. But it's also so much of what shopping in terms of experience is, is that immediate buying and then being able to wear it. And as a disabled person, you know, it might be a month before I can get to my seamstress and get them to alter it so that I can wear it. And it's just also realising that what you want to wear may not be physically possible for your body type, or may just require too many alterations. Like anything that's sequined is really difficult because the sequins just fall off once the hem is kind of caught. It's the same with wool and cashmere, you have to be careful of it. So it's that, like having to police yourself to what's available actually for you. SIMON - Obviously I have a huge amount of empathy. I remember being a teenager and we'd go out on a Saturday and buy clothes and my friends would wear them that night and then I'd have to wear mine two weeks later. I could never buy off the peg and just put it on, or it would be really long in the arm, or whatever it might be. Shoes inherently are always going to be difficult. That other bit, you look at something and you go, I like it but it, but if it's got something along the side of the leg or words or something…SINEAD - You've lost it in the alteration.SIMON - You can't do that. Or cargo pants you can't, because the pocket would be on your ankle. So there's a whole load of things that you have to really think about. My favourite seamstress at the moment, Pat, who is a short woman as well, so when I get shirts she'll take the cuffs up but she also reduces that little vent bit that you get, so the vent looks the right size for me proportionally. Oh my goodness me, this is a game changer. It's also why my favourite clothes I got made in Hong Kong because they were made to measure and it's like putting on a glove because it's perfect. But this is very rare for us.KATE - I was going to say, but what is the answer here, because I mean, you guys admit that you are in a very small minority of people…SIMON - Oh, you've turned, you've turned.KATE - So is it really worth…?SINEAD - But we're not. But we're not because you've just said that exactly what me and Simon need you need. KATE - Oh, okay.SINEAD - So the solution to all of this is customisation. So whether or not that service is available in the store or whether or not it's available through technology, and technology's not the ideal solution because people should still be able to exist in those retail spaces. But you know, Kate, you just said that you need maybe three inches off the length of a pair of trousers that you buy, but even for style reasons somebody might want a jacket that's three quarter length sleeve, or they might want a shirt that's half-length sleeve. And what I think companies need to do is embed this customisation process, because everybody has individual needs. You look at French people, and the reason why they're so chic is because they take everything to a tailor because it fits them. KATE - Oh, really? I didn't know that.SINEAD - Yeah. And that's what we need. SIMON - The Levi store in San Francisco had an alteration service, so you could go in, you put the jeans on and then you stand there and you go back three hours later and you pick them up. Oh my…SINEAD - Ideal.SIMON - It was perfect.SINEAD - Do you know Rebecca Cokley?SIMON - Oh yes, I know. SINEAD - So I was talking to Rebecca Cokley this week…KATE - No, who's that?SIMON - She's a short person, an activist.SINEAD - She used to work for the White House, she's extraordinary. But she bought a Burberry trench coat after I had mine, and she brought it to the Burberry store in DC and they did all of the alterations for her. And I saw it on her this week and it's impeccable. KATE - Did they do it for free?SINEAD - Yes.KATE - Wow.SIMON - Did she say, "I know Sinead, I want it like hers"?SINEAD - I don't think so. I'm a big deal only in a small town in Ireland, like do you know what I mean? Big fish, small pond.SIMON - Yeah, but I think your pond is getting… I said that earlier, but I think you're getting into a bigger pond these days. Almost the sea.KATE - We're running out of time and I feel like your pond is about to get even bigger because you've been on Ouch, so…SINEAD - I think this is exactly what I need, I mean it genuinely, it's a very different conversation to what I've had before and I'm very grateful. KATE - Give us a plug for your podcast, Sinead. Where can we find it?SINEAD - You can find it on Apple, Stitcher, Spotify, wherever you get your podcasts. It's called 'As Me with Sinead' which is a way in which I teach the world how to say and spell my name. [music]KATE - So that was Sinead Burke. We hope you enjoyed our chat with her. SIMON - This is a kind of one off for Ouch. We had a one to one long form interview with just one guest.KATE - I know, it was quite cool though wasn't it? SIMON - I really liked it. I mean, I'm not going to do it every time, but to have that opportunity and to grab Sinead for an hour is pretty special.KATE - Yes.SIMON - It meant we could dig a bit deeper, and the bit we always want to do, because she's so beautifully crafted in what she talks about, I think we got a bit underneath, and I like that.KATE - Yes. I think we made her a little bit uncomfortable at times as well, which isn't a bad thing.SIMON - Well both you and her made me uncomfortable quite a few times as well, so there's nothing new there.KATE - Well, that's it for Ouch this month. SIMON - Remember election day is December 12th and you should be looking at postal votes now if that's more accessible for you. I do a postal vote. Don't let yourself sit there on election night feeling sick that you didn't contribute. KATE - With thanks to Beth Rose, studio manager, Jo Swashanaki, because I don't know your surname, and this month's producer, Damon Rose, we'll say goodbye.SIMON - Goodbye.KATE - Jo, what's your surname? Jo Yon.Â
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Access All: Disability News and Mental Health
Weekly podcast about mental health, wellbeing and disabled people.