Lucy Beall

My body is so thankful for the sun in Scotland. Whenever I was allowed to leave the house, I’d often stand in the empty street, feeling the warmth of the sunlight, and close my eyes. I grew up in Texas and am not used to being inside for so long. I’m not allowed to leave my house anymore, according to a letter I received in the mail.

I have a mask, but I also have a compromised immune system and a rare genetic condition. I need medical treatment I cannot reach, I need my education that is both at my fingertips and untouchable, and I need my body to stay well. My doctors let me know that I should not the house all if I can help it, that it would be too dangerous.

I have felt anger at my body many times before over the two decades of my life, cursing my scars and my skin that refused to heal, but I am tired of being angry. I will not be angry at it this time. Instead, I’ll sit in the garden and close my eyes and feel my body welcome the sun.

Isabelle Constant,

Lucy Beall

St. Andrews Fife 

28.04.2020

Nikon d750

 

»I’m much much more than my body and that’s what I always want my message to be.«
Talking to Lucy Beall about Body Politics, Art History and EB

Hi Lucy! Where are you sitting at this very moment? In your statement that you’ve shared with us, you mention the problems of navigating your condition during the pandemic, how is the situation for you right now?

Luckily I am at my boyfriend’s flat right now. Usually I live alone in a one bedroom flat, but my boyfriend actually has a flatmate who left kind of before the pandemic became a pandemic. So obviously we’re in a position of privilege that no one else is on our bubble, no one else can get sick. And that’s really lucky for me: Because of my disability there are – just straight up – some things that I can’t do. Because of my hands and the scars on them, my hands are more fragile, so that means I can’t open for example bottles by myself. And sometimes I have scar tissues on my throat which usually is not an issue but sometimes – if I’m not careful enough – I can choke, which of course is dangerous. Another thing is that my skin affects every surface of my body, which includes my eyes, so sometimes with rapid eye movement  [REM sleep] the top surface of my cornea can scratch which is horribly painful, it’s just the worst. So that also means that I can’t open my eye for the day and I can’t see. Even though I do live alone, people around make sure that I am still okay – so living by myself right now would be pretty dangerous. If I went shopping I would have to limit what I could buy because I can’t open everything by myself. So I’m super fortunate that my boyfriend and I are in the position where I can stay at his – that’s good! Whenever I need more health supplies, I can go back to my flat and come back, which is super lucky. Also the local pharmacy is delivering medication right now so that’s super lucky. The other thing with my condition personally is that I don’t have chronic wounds, which is fortunate. A lot of people of my condition do have chronic wounds – wounds that just don’t heal over a lot of their bodies. Whenever I have wounds, it’s usually really random and sporadic. It could be from, you know, just being clumsy or falling down, or it could be from a friction blister that turns into a wound – so I don’t know whenever I need my special bandages. And that’s a whole issue in itself because I can fall into a false feeling of security and think I‘m fine and think I’ll be okay with having just one extra bandage but then »oh oh«. But things are going slower right now so I need to be really proactive when it comes to ordering bandages and so on. In general I am very fortunate.

Regarding the health system and the question of accessibility to medication and treatments: Where are the institutions failing? What is your experience with that?
 

My friends with my condition back in America for example are not having the same ease of access as I have here. The whole situation there is just really scary. Even when I was little, it could be really bad: it could take a long time to get my bandages, a lot of times insurances wouldn’t pay for it, because they said it wasn’t essential sometimes, even though it absolutely was. The thing about my skin is that it’s fragile. I can’t just put on a plaster, because that would be too sticky. Also the thing about open wounds is that it leaves you open for infections, so you need the special bandages. It’s not a luxury, but a lot of times we would have to order it out of pocket or, you know, surgeries were expensive, things like that. DEBRA U.K. has been an absolute life-saver for me and my family, for example when I had my first hand surgery in the UK. About that: What happens with my hands is that scar tissue can tighten and the constant use of one’s own hands makes them more fragile. What happens next is that the scar tissues want to pull my fingers down towards my palm and a process called mittening would start, so they would almost form like a mitten. I wasn’t quite at that level but still needed that surgery and me and my mom just kept on waiting for a bill, which never came. It’s amazing – in America that would be a surgery of a few thousand dollars depending on insurance and so on. So I am super grateful to be here. Luckily, since I am a student, health insurance is guaranteed but one thing to consider is wait times, which I understand since it’s not a private health care system, so you need to wait sometimes. That can be scary for sure since it’s really hard for me to just go to my GP and tell them: »This is what I need. I need this because of this« and have them listen to me. Whenever I go to London and go to the specialist clinic for EB patients, it’s wonderful. There, it’s no issue and everything I need is treated. There, I am treated with respect and like an adult, which is really important.

Being asked about explaining your condition and how you’re feeling at the moment must be very tiring – how do you handle situations in general where you’re getting the feeling that people only focus on your condition, on your body, but seem to forget about you, about Lucy as a person?

A lot of times whenever you have a visible condition, especially when you’re a woman with a visible condition, you can be talked down to and treated like a child. So that’s part of why I do talk about sexuality and disabilities a lot – because I don’t want to be seen as a child, I am a 21 year old woman! That’s a lot of these issues I have personally with the press surrounding my condition: A lot of times people with EB are called butterfly children and this is primarily due to the fact that in some cases you aren’t alive for your 18th birthday, so a lot of people don’t make it to adulthood. Therefore it’s called a childhood condition. But what about those of us who are? Those of us who are adults? I’m just really outspoken about that stuff because it just, you know, fits into that stigma that people with that condition are more childlike but that’s not the fault of the charities, it’s just how it is.

A lot of times people do ask me why I post so much lingerie pictures – that’s because first of all I want people to look at my body and admit there’s nothing wrong with it and second of all I want to, you know, challenge what sexuality is and I want to be upfront about it. Because honestly, with EB and with women with EB and with women with EB who have sexualities – it’s not going to take a lot of people to change someone’s mind, it just takes one person.

It’s a shame that so many people just don’t see sexuality and disability as something that belongs together. I mean you’re still your own person who can be sexual if you want to be – your condition doesn’t define you.
 

Yes, that’s so frustrating. It’s the thing that frustrates me the most I think – anytime I do an »Ask me a question« thing, I would always get a question that says »Can you have sex?«. Then I’ll message that person and I’ll be like: »Just so you know, it’s not cool to ask someone with disabilities this« and they always defend themselves with »It was just a question«. It doesn’t matter, it’s not embarrassing but I mean, would you answer someone who asks you that? I remember one woman saying: »It’s just like asking about if you work out!« and I replied: »No, it’s not!«. It blows my mind every time.

It’s ridiculous. These people who keep asking you that would probably not ask someone without your condition a question like, »Can you have sex?«.
 

Right! I mean you wouldn’t ask Kylie Jenner that question, it’s just crazy. I’ll get to more of these weird questions...next week (laughs). Annoying, but that’s okay, that’s just part of it I guess.

Besides university you’re also very active as a writer, media ambassador and body positive model – referring to the question before: What was your experience inside and with the fashion industry? An industry that perpetuates so much of how we think of our bodies, beauty and norms in general? Did you feel tokenized at times?
 

I think that point is really important because a lot of times now brands are becoming more aware of what the audience is wanting. And since the audience is wanting more body positivity, I think people can run the risk of hiring someone just because they are disabled or a disabled model, which of course – once you’re in that position – doesn’t feel that good. I am lucky that I have not yet been to any shoots where I have felt like that. That’s also the reason why I’ve decided to not work with tabloids anymore because I don’t want to be sensationalized anymore. Even though I do pose in these images and sometimes they’re provocative, I also have six degrees at this point, I’m an academic and that’s what I’ve always wanted to be. I’m much much more than my body and that’s what I always want my message to be. And what I tell the people the most who message me is: »You are more than your body. Your body can do amazing things, but it doesn’t define you. Not at all.« How I define myself personally is through my academics, that’s kind of always how I’ve done it, because I understood that my mind wasn’t limited by my body. I am always constantly trying to not be sensationalized. But recently Metro and Daily Mail [two tabloids] did a couple of articles about me that I didn’t even know were being written. They posted some pictures of me that I didn’t know existed and that I would never have wanted to be posted. Luckily they took them down, but still I was like: »Okay this is getting bigger, I really need to keep solidifying what I want my message to be«. So that’s why I’ve personally decided to not work with tabloids anymore – people need to be careful about tokenizing people just because they think it’s cool. Therefore I am even more excited for opportunities like this!

[At the Vogue shoot] I did not feel like I was being sensationalized at all. They did not make my body the focus, they made me the focus. I'm studying Leonardo da Vinci right now, his biggest thing was connecting the image with the beholder, the intentions of the figure, using the forms of the body. And he said that painting needs to do two principal things: first, display the image, and second, display the intentions of the soul. And so, even though I didn't learn about that concept until like months after the Vogue shoot, that's in retrospect how I felt valid: They weren't shooting pictures of my body, they were shooting pictures of me. And that's what I want to keep doing in the future, because I think that's what will help people the most. And also, what I try to keep in mind when I'm doing this stuff, is: »What did I need when I was a 14-year-old girl wearing bandages?« And even though it would have been really cool to see someone who looks like me, you know selling soap, what would be cooler is to see someone like me become an academic and publish a book and do things like that, that would have been ten times more helpful. So that's why I'm always quite honest about what I'm doing academically and I'm always quick to correct people who ask me when I wanted to become a model as my career (laughs).
'Cause I don't.

I always felt from what I've read about you, from what I've heard about you, it's something you do amongst other things besides your academic focus.
 

It's an important tool because the thing about EB is that it's a very visual condition, and so in order to get people to understand a little tiny bit of what I go through, they have to see it. And humans are very visual creatures anyway, you know, we work with art – we know that – we know how people can react to images, but the thing is, too, whenever people see me, they think they know me.

Do you have the feeling that the industry is slowly changing? What is it that still needs to be done?

I do feel like the industry is changing in a good way because like ten years ago I would not be in this position, I wouldn't, there is no way. I think what’s important at this point is they need to not sensationalize the people that they're representing and people need to start giving voices to the people that they're talking about and not just talk about them. You know, whenever you're talking about disabilities, have someone with a disability speak, if you're talking about race, have a person of colour speak.

Yes!
You just mentioned it needs people who have experienced certain things, voices that need to be heard, but what else do you think would be the next big step for not just the fashion industry, but in general – to get a diverse, open-minded, inclusive group of people to the table?

It's important to show the people, but it's equally as important to get those people you’re talking about into decision-making positions. Literally bringing them to the table, because that's where you run the risk of sensationalizing someone whenever you don't have someone who's been in that position or is really knowledgeable on the subject trying to make decisions for them and how they're going to be represented. 'Cause a lot of times I've been about to be in some shoots or articles or whatever where they kind of had an idea of me and wanted to make me fit the idea. You know? The thing is, too, that a lot of times people haven't met someone with a visible disability and they weren't close to that, so at the same time I was very frustrated and I also couldn't blame them, because they had no idea that what they were doing was offensive to me unless I said so. It's tricky! (Laughs.) I think in short, people need to bring more diversity to the decision-making levels, honestly.

Let’s get into academics. What was your path into art history and archaeology like?

I moved to London when I was 17, basically what happened is that I was having a lot of throat surgeries. Basically, I was having them quite a bit and since EB is so rare, a lot of doctors don't know how to treat you. You need special doctors, anaesthesiologists, whatever. And so my doctors who I grew up with all my life, since I was two, were in Denver, Colorado. So whenever it looked like I'm not getting better, I was getting worse and might need to spend much more time at the hospital, me and my mom eventually moved there. So yeah, I had a surgery and it didn't work, I came out worse than I went in, I was coughing up blood... Usually, for reference, after these throat surgeries, what they do is they go into your throat, you're asleep, the actual procedure takes like 15 minutes, the longest part is waking up. They inflate a balloon, and that's it, you're good to go. Your throat's a bit swollen, it feels like you have a bad sore throat, but you're not choking anymore and it's [an] instant difference. Usually that night I'm super careful and I'll have, like, soup and milkshakes, but you can eat straight away. It's great, because before that, you have such a deep hunger in you, you can never get full because you can't even– so worst part of it for me was like, because it would get stuck in your throat, even liquid would get stuck in your throat, so whenever you were really thirsty, you couldn't just drink a glass of water, you have to take tiny sips. It would just be torture. And especially at night, you know whenever you're not swallowing a lot... I would wake up in the middle of the night and just be choking. And then we get to the point where my mom would come into my room in the morning and find me sleeping sitting up, because I just couldn't– it's really torture. Luckily I haven't had any of that since I was 17, so thank God. So yeah, I got the surgery and said to be totally good to go, [but] I was still having a really severe pain in my lower esophagus and coughing up the blood, which of course that shouldn't be happening (laughs). So, we went to the ER, we saw that I had a structure in my throat, it was still there, even though I had surgery. And then I was told I was gonna need to have surgery again. I was so upset, I didn't want to go through it again. And then they told my mom whenever I was in the ER, whenever I was going under, that they might have to consider giving me a feeding tube if they couldn't fix it, because I was just losing too much weight at that point. But luckily they tried an experimental surgery on me where they used a longer balloon, and it worked! And I haven't had to have another one and I can eat whatever I want again. So that was that. But the thing was, I had graduated high school early, I didn't have anything to do. That was scary for me. So I just kept getting better and better and then I got the interview for Sotheby's [Institute of Art] and I got in, I took the interview for Birkbeck [University of London] and I got in! And that was that. I went off and started my life here. Just insane. At the time I didn't know if I would live in the UK, but you know, here I am. I remember though whenever we got back, my first week at Sotheby's was a field trip to Rome. I remember being at London Gatwick in the EasyJet chair and my mom was like: »Do you see anyone you know?« And I'm like: »No, I don't know anyone!« (Laughs.) So, we went, it was wonderful. But, that was my first experience of the art world, I didn't even know the art world was a thing, you know. They talk about it, you see auctions…

But it's something completely different once you make the step into it.

And you're like, oh my god, this really is another world.

Yes, it's like a parallel world existing next to the one we actually move around in. What art works, artefacts, theorists or experiences had the biggest impact on you?

I remember, we were talking about romanticism and things like that, and we were talking about Poussin and this one painting of his of shepherds in a field in Arcadia, ‘Et in Arcadia ego’. For some reason, I'll always remember that, because the way our teacher explained was so great. And there I am, I know it's supposed to be a melancholic thing, because it was on a tombstone, and it was this idea that, you know, death and time are always going to be a part of life, and it's kind of comforting –  I don't know, it was just a really interesting concept and that was the moment where I was like, there is so much to learn about people through art, and what people want and what people are afraid of. I understood that no matter what time we're in, people always want the same things. It kind of clicked for me. So that was probably the one that had the most effect on me. Besides ‘The Rape of Persephone’ by Bernini. That was one of the first days in Rome and just the way that the fingers go into the flesh of hers, it's made of marble, but you feel like you could reach out and touch it and your finger would indent in it. So, that was probably the most special part for me, that Poussin painting.

Poussin was also one of the first artists that I had connected to, the first sessions of class at uni in my Bachelor degree, we had Poussin, Vermeer, and I was starting to really like, immerse myself into art history. And also one of my first professors at uni, he had this charisma, you just couldn't not listen to him.

Yeah, sometimes they can be really awesome, same with archaeology professors. But yes, I think it was just so cool to see how it was a different world. And you could be a part of it, if you knew how. So I think that was really exciting to me, because you know, whenever I grew up, we didn't know how long I would live, we didn't know if I would be able to get a job, and then here I am.

And you proved everybody wrong.

Yeah! And I'm here in this exclusive kind of world, and I'm really good at it! And it was kind of like, okay, no one ever thought I would do anything. And then here I am! It's crazy.

I also read that you're the youngest person to start at Sotheby's and I was just like, wow. That's amazing!

I remember what I wore to class for the first day, I was 17 and I was so scared, I was like, oh my god, what are they going to think of me? (Laughs.) But I loved it. So yeah, I did two semesters at Sotheby's and I went back for summer classes and stuff. I love Sotheby's, I'm really close friends with my history of decorative art teacher, I love her so much. I really love decorative arts as well, but I grew up in a town in Texas where cows outpopulated people, no one cared. So to know that my interests were not just approved, but that I was good at it, that was pretty big for me. So yeah, I always appreciate her, she's great.

Who or what are you interested in now, art-wise?

Now I would say, the artist I'm interested in the most is probably Leonardo. I think he's great and what's also so great about him is how much we can know about him, and his own words, also he as a person is just really interesting to me. We had a really great field trip before all this happened, we went to the winter collection exhibit at Holyroodhouse Palace in Edinburgh, it was all his drawings, and we had to pick a drawing, give a presentation about it, and then write our research paper about it. I did one, it was called ‘A nude youth as St. John the Baptist’, and it's really interesting because the figure is quite androgynous. Which is cool, because, you know, he's a saint. So that was a fun paper to write.

Sounds great, yeah. I think my first real connection to Leonardo was not a direct one, it was through Basquiat – I just love his work so much –, especially the paintings that he did in reference to Leonardo's body schemata, I was so moved by it. It was in Frankfurt –  two years ago I went there with a good friend of mine, and I just stood in front of this big painting of his – ‘Leonardo da Vinci's Greatest Hits’ – for almost an eternity.

I personally lean towards more pre-modern and early modern for sure, I think it's so interesting, I love the romantic aspects that there are still more paintings to find, there's still more stuff to know. Also, I read Latin, so I'm really a fan of all of that, reading all the texts and whatever. But I love modern stuff as well, I love Bauhaus. I wrote this really fun paper last year, I compared the Bauhaus to Dadaism and how they were both reactions to a need for stability after the war. Yeah, and I love Art Nouveau, the Arts and Crafts movement…

Also the connection between Arts and Crafts and Bauhaus.

It's so interesting because they wanted to go back to like, the woodcuts and the workshops and the guilds, it's just so interesting. My Sotheby's professor, who I'm really close to, is a huge Bauhaus fan, so we talked about all that. That's really interesting, because that's when your home became a piece of art, you were living in art! Yeah, it's so hard to specialize, but I think I'm gonna stick [with] Renaissance stuff.

I worked with an auction house called Dreweatts 1759, it was my first job and I was at the selling exhibit of the Saatchi gallery, the salon, in 2018, that was insane. I can't believe I did that. We were selling Berenice Sydney paintings, have you heard of her? She is great.

A bell is ringing, but I can't connect her right now.

She is kind of lesser known, even though her provenance is amazing. She's been at the Uffizi gallery, and like The Smithsonian. It was so much fun, because a lot of times we would get school groups come in, and I was literally the only one, just me in the basement selling art. And whenever we got the school groups in, the teachers would be kind of nervous, but since they're abstract paintings, you can kind of see whatever you want in them. So I would tell the kids, you can see whatever you want in them, what can you see? And they would start telling us what we could see. It's cool to see that switch, you know? I love art. Art's great. So I think it really does help me and how I see my body to see how a photographer sees me, and how someone who is drawing me sees me. Because then all of a sudden I'm less critical, I see myself as something to enjoy like art, I enjoy art! I've never once looked at a painting of someone and been like, ugh. You know? (Laughs.) I love art, art's great. I love it a lot, it's a fun world we're in.

Interview by Sarah Marcinkowski and Katharina Ripea, conducted by Sarah Marcinkowski

If you’d like to learn more about EB, visit https://www.debra.org.uk/“

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