Please find a full audio transcription of “Atholl, Emma and Hannah on educating people about visible difference” below.
Moderator questions in bold, respondents in regular text.
Unable to decipher = ( inaudible + timestamp ), Phonetic spelling ( ph + timestamp ), Missed word = ( mw + timestamp ), Talking over each other = ( talking over each other + timestamp )
Introduction:
Welcome to Changing Faces, Voices of Visible Difference, the podcast where we talk about having a scar, mark or condition that affects our appearance.
Hannah:
Hello everyone and welcome to this week’s podcast for Face Equality Week. My name is Hannah and I’m joined by the lovely Atholl and Emma, and we’re going to be talking all about visible difference and the best way to educate other people. I have a condition called scleroderma, which is an autoimmune disease that causes a lot of scarring all over my torso. Emma, would you like to tell us a little bit about your visible difference?
Emma:
Yes, I have Char syndrome. It’s a very rare genetic disorder. It affects facial features when you’re in the womb, amongst other things.
Hannah:
And Atholl, do you mind just telling us a little bit about yourself?
Atholl:
I have a condition called cystic hygroma, which causes cysts to form where you have lymph nodes and then when they were taking the cysts out, which were predominantly in my neck, they had to sever my facial nerve, which also meant that I have a condition called Facial Palsy, which is the permanent facial paralysis of the left side of my face as well.
Hannah:
So, we all have obviously very different experiences of visible difference, do you mind just telling me a little bit about some of the positive and negative reactions you’ve had from people, Atholl?
Atholl:
I’d say one of the biggest positive reactions I’ve ever had, which is quite recently at my work, so shout out to my garden centre family if you’re listening, because this always sticks in my mind. We were, sort of, joking about and then one of my co-workers, Diana, had said to me, “Oh, well, what is your condition if you don’t mind me asking?” and I remember just telling her. But then by the end of the conversation, everyone had basically stopped what they were doing and they were all just, sort of, listening, asking questions, and I thought that was, like, really great. It, kind of, made me think like, “Oh, I wish they’d just have asked away if they wanted to,” but it was so nice and it wasn’t in an invasive, picky way, wanting to know every single detail. It was because they were just, like, genuinely interested and wanted to educate themselves and I just thought that was really nice to, sort of, have as an experience in my mind, because, obviously, some experiences are just not the best at all. I always remember one time where someone came into my work at the same place, so we take people up to the till to make them pay, and when I was getting the money from him, he asked me if it was an abscess, which is always the worst thing, never just go up to someone and assume that you know what the visible difference is or their condition is. I remember going, “Oh no, it’s not,” and then he concluded the conversation with, “Oh well my friend had an abscess and if I looked like him or you, I’d probably kill myself.” Then I just had to, obviously, being in a waiting situation and in a work situation, just, kind of, had to take that, which you shouldn’t have to do and I probably shouldn’t have needed to do. I probably could have got my manager, and she did say, “I would have thrown him out,” but I just took it. It was nice that I had the support of my work colleagues, who gave him a lot of death stares and he hasn’t been back since.
Hannah:
It’s one of those things isn’t it, where, like, we don’t always know how to respond when we do get those negative responses from people because we still want to protect ourselves, and if we get angry at a person for doing that, we don’t know what risks we’re opening ourselves up to.
Atholl:
I’m a very fiery Aries, so there are many times where I just want to respond to people, but you do, kind of, have to self-assess, like, how bad could this go if I do start an argument?
Hannah:
Yes, it’s always playing that balancing act, isn’t it? So, Emma, what are some of your, kind of, most positive and negative experiences of being with people responding to your visible difference?
Emma:
I think one of the most positive experiences I had was when a mum came up to me with her daughter and she was just asking if I could talk to her about how I look, which is great as long as the person doesn’t look busy and you’re respectful. I think it’s very good to talk to people, but this instance was really good because she, kind of, asked, “Well what’s wrong with you?” so I started out of the gate, kind of like, “Well actually, nothing’s wrong with me, I was just born a little bit differently,” and then went into how I feel about my appearance and why I use a cane and things like that, and I was so into it, I actually got lost. I was walking along with the mum and the daughter and when I stopped, I was like “Where am I?” It, kind of, offsets all the stares and comments when you get people who want to discuss it, I think, and not just treat you as you’re invisible or not approachable.
Hannah:
Yes. I think that’s the fine line between those positive and negative experiences sometimes, I think, is when you have genuine curiosity, versus people treating you like you’re a freak, basically. It’s trying to find the line between people just coming up and just genuinely wanting to be educated, and then dealing with people who are just treating you like you’re something to look at and stare at, and it’s quite a hard balance to strike, isn’t it? Because I’ve had very similar things where I’ve had wonderful experiences where people have come up and said, “I just would like to know what’s going on, so I can understand.” Those experiences are always so much more rewarding because you feel like you’re actually, like, making a difference with your visible difference. If there were, like, one or two things that you wish you could tell the general public about visible difference, what would you start with to try and educate people about what visible difference is and how to treat people who do look different?
Emma:
I would definitely say as long as you come with respect to the conversation and maybe don’t bring religion into it because I’ve had some experiences where people have said, “Oh I’m praying for you,” and it’s, kind of like, well, one, you’re assuming somebody’s religion and if they are religious, but also if you’re praying to fix someone, some people don’t want to be fixed, that we’re not actually broken. So, I think we definitely have to have respect. It’s difficult to always be ready to educate people, so don’t expect people to educate you on this. There’s Google, you can Google it and find resources, so, yes, it’s definitely a good thing, but you have to be respectful.
Hannah:
Yes, I think that’s the most important thing to note, isn’t it? That, you know, educating people actually can take quite a lot of emotional labour for a person and I think we need to make sure that the public doesn’t assume that everyone is always ready to educate at all times, because people with visible difference, we just want to live our lives. We don’t always want to play teacher, do we? And how about you Atholl, what would be your, kind of, top things that you would say to someone?
Atholl:
I would say, like, the whole thesis of this idea of normal and looking normal is just because of-, based on education and due to in-exposure to people who look different. I always think I would love to just challenge the general idea of what normality is because, I mean, I’m guessing all three of us see ourselves as normal people. Just because we look different doesn’t really mean anything, and I think that’s one thing that I try to educate people, when I do, sort of, like, my TikTok lives and stuff like that. A lot of people go, “Oh, what’s wrong with you?” and I was like, “Well, there’s nothing really wrong with me, it’s just I have this visible difference and I just look a little bit different, but I’m still a normal person.” And as Emma said, another thing is respect. Just because you ask someone, and even if you feel you’re asking in a nice way, I don’t have to feel obliged to give you an answer, especially if I’m having to do it ten times a day.
Hannah:
Yes, I completely agree. I think there needs to be this, like, generalised respect level that needs to be met, that you can’t assume that everyone you meet on the street is going to be happy to tell you about all of their personal medical information. But I wonder, do either of you have any advice that has really helped you deal with any comments and stares or negative reactions that you’ve had in the public? Is there something that stands out for you?
Atholl:
I will give you the best piece of advice I have ever been given in my life, and this really helped change my mindset is do not accept criticism from someone who you would not go to for advice. So, this stranger in the street who hurls abuse at you, would you go to them for advice? Absolutely not, you just wouldn’t, so, therefore, that really helped change my mindset. Another thing was, I used to be so consumed by going outside and people would be looking at me and I would be worried that someone was going to say something, that I went through a point where I didn’t leave my flat for six months because I just was so worried that people were going to say something. I always remember my dad saying to me, “If you keep looking for someone to be looking at you, you won’t stop until you find someone,” so that you almost prove to yourself that you were right and that people are looking at you. He was, like, “You really need to change that and start focusing on what you’re doing and who you’re with, and maybe focus on your own opinion of yourself.” In doing that, I, sort of, started to forget that other people were looking at me, or what they were saying, and I realised that I actually had a bad opinion of myself and in doing that managed to improve my own opinions. Whereas now I can honestly say in a non-egotistical way, I absolutely love myself now, and I genuinely don’t even notice if people are staring at me now a lot of the time, unless they physically say something. There are a lot of times where my friends will be, “Oh, I got really annoyed at that person who was staring at you,” and I’m like, “I had no idea,” so I would say those are two things that I would say is, don’t, like, listen to people because you wouldn’t go to them for advice, and to just practice self-love. Self-love goes a very, very, very long way.
Hannah:
I absolutely agree because I went through a very similar experience myself with my ( timestamp 00:10:00 ) scars, where I literally didn’t look in the mirror for a really long time. I was like, “I’m just not going to look at it and then it won’t be a problem,” so my only perception of myself, of my scars, was defined by other people reacting to them. It really took, like, a similar journey to yourself, where I was, like, “Oh, wait a minute, maybe I need to figure out how I feel about myself, and then I can change my relationship with my body and my visible difference.” That really helped me, kind of, shrug off other people’s judgements, because it’s like, “Well I love myself, so what everyone else thinks is kind of irrelevant.” So, how about you Emma? Have there been any, kind of, key things that have really helped you deal with those comments and those stares?
Emma:
I think definitely self-love is the answer. I think that’s a really big journey as well. I’m not at that stage yet, I’m at, like, body-neutrality at the moment. I’m trying to be body-positive, but we’re not there yet. But another thing I do when I’m getting stares or anything, is I like, kind of, repeating something over and over until I’m out of that situation, so I’m not emotionally-invested in it and usually I say something like, “My self-worth isn’t somebody else’s problem.”
Hannah:
Yes, that makes sense. It’s not like a linear journey, we don’t wake up one day and suddenly love ourselves and suddenly be completely okay with visible difference and never be affected by anyone’s opinions ever again. I think it’s one of those ongoing journeys that we have to keep, kind of, working at and keep building those blocks of self-love and it’s body acceptance.
Atholl:
So, with that in mind, and, like, how obviously all three of us have just said that we’ve all had very similar journeys of, sort of, self-love and people’s comments have helped shape that and helped, almost, hinder it in some cases, how do we then help educate others or how do you think education could be improved to help with that journey? Because I feel like education is the key thing. If people were actually educated, then they wouldn’t grow up to then go on and do those things and say those things because I’ve found, like, from doing TikTok live, TikTok has been a great thing for me, and it’s got me in touch with so many people. I just hit 80,000 followers, which is insane, and a lot of the time when I go live, it is, sort of, younger children under the age of 18, who are all very curious. I honestly don’t mind answering questions, but that really showed me that if you educate children at a young age, they are willing to learn. I’ve found a lot of times now, when people come on and they say, like, “Oh, you look like you’ve been stung by a bee,” or whatnot, the same people, the same children, are then defending me and be like, “You don’t say stuff like that, that’s rude.” Even people that have come on and I’ve been, like, “Oh, well maybe that’s not how you should have worded it” and they’re like, “Oh my goodness, I’m so sorry,” I then see them coming back on to my lives and, like, interacting with me, and then, sort of, telling off other trolls that come on.
Hannah:
Yes, well I think that’s what’s so great about platforms like TikTok because you can see the learning and the education happen in real-time. You can see the change happening, like, in front of you. The most important aspect of education is starting it young, so we talk to children about difference so that they grow up to be adults who are sensitive to visible difference. Because I think at the moment, what we’re dealing with is a lot of adults who don’t know how to deal with visible difference educating their children, and in a way that doesn’t actually help people like us. Things like, you know, I’m sure you’ve both experienced this, where a child might be pointing at you and the mother or the father has said, ‘Oh no, no, don’t point, don’t point,’ and kind of, like, makes it a shameful thing, so that the child then is less likely to be curious and ask questions in the future. How do you think a parent should respond, Emma?
Emma:
I definitely think that you can tell a child anything, it’s just how you say it that’s important. It does take a village to raise a child, and I think you should be looking for diversity in your groups and people that you talk to because I think you always think yourself as the default so that anything different is interesting and curious. I think if you try and talk to people with your child about things, that there are lots of people who are different and it’s not something to be scared of, it’s not something to be pointed at. It’s something to celebrate, really.
Hannah:
Yes, I agree, because I think at the moment we have a real problem with the way society treats visible difference and disability and things like that is intrinsically tragic. I think that is definitely passed on to children which, like you say, it doesn’t actually end up translating to equal treatment, it ends up translating to pitiable treatment, where we’re treated as, like, “Oh your life is so tragic and sad,” and there’s no appreciation of, like you say, the positivity in the visible difference community of people who have embraced being different.
Atholl:
I think, as well, as you said, if you get them early enough, it’ll stop them growing up and then making, like, mistakes, or where they think it’s funny and then they educate themselves and they realise it’s not, and I think a big part of that is representation in media. When you look on TV, why aren’t there people that look different? It’s so minute, and I feel like if you had more representation, that causes another, sort of, aspect where, if a kid is watching a TV show, they can ask their parent without the person actually physically being in front of them, and that opens the discussion even more. The parent can, sort of, control that conversation and not feel like, “Oh my goodness, my kid has just said something to this person directly to their face, I need to, like, mission abort and get out of the area that I’m in,” which I often find happens if a kid says something. I mean, you can educate your child without telling them off and I think that one thing that I also think should happen as well, is if you tell a child off, I think they almost have, like, a bad ideology in their head, like, “Oh, that’s bad,” and I think that needs to be challenged.
Hannah:
Yes, it’s like you’re reinforcing this negative connection between visible difference and, like, punishment for the child if you punish them for doing something like that. Having those opportunities for children to have those discussions without the person right in front of them I think would be amazing because it means people like us have to take on less emotional labour. But I think just to wrap it up, I guess, like, how do we reach the adults who have left school and who maybe have already got these thoughts embedded in them? How do you think we should approach that, Emma?
Emma:
I think the Internet is there. When you’re an adult, I think you have to take some responsibility in educating yourself about these things. So, I’d definitely say to an adult, “Look online,” there’s tonnes of people on every social media platform who are talking about visible differences. Look at representation as well because there are movies about people with visible differences. There are resources out there, and I think it’s up to the adult to, kind of, start that conversation with themselves about, “Oh, I’m treating people a bit differently. Why is that? What have I been taught that I need to unlearn?”
Hannah:
Yes, like you say, it’s about everyone taking the individual responsibility to confront their own internalised prejudice and then taking that journey. How about you, Atholl? Is there anything else you’d add to that for adults to, kind of, start that journey to unlearning their biases?
Atholl:
Adults are a hard one because children you can, sort of, mould them as they grow, whereas adults are, as you say, they’ve already, left school, they’re already adults, they already have their own thoughts and opinions, which I think can be quite hard to change. So, I think the way to tackle that is with representation, like in the media. For instance, if you go on Instagram, yes, you have Nikki Lilly, Katie Piper, Katie Mearn ( ph 17:51 ), Adam Pearson, who all have quite big platforms, which is great, but I feel like if people were actually exposed to more people with those kind of platforms, or more people on TV, it challenges their own ideology of the way they’ve maybe been thinking of, “Oh that’s weird and awful.” Then when they see it on TV, they might be like, “Oh, that’s actually not what I thought it was.” I always remember the first time I watched a documentary on BBC Three. I can’t remember the name of it, but Adam Pearson was the one hosting it, and that was the first time that I had ever seen someone with a visible difference host something and do a documentary. That really did make me think, “Oh my goodness, I have a visible difference, maybe I can do that too,” so I think it, kind of, works in more than one way with education, but also, maybe, sort of, inspiring a young person with visible difference as well.
Hannah:
Absolutely agree. So, now we’re, you know, all coming up to Face Equality Week and at the same time, we’re all starting to, kind of, face coming back out into the world and dealing with a lot more reactions from people. Is there anything that’s really worrying you, or even something funny that’s coming up that now that you’re going to be out in the world more that is really on your mind Atholl?
Atholl:
I think with wearing masks, I have become so accustomed to not having stares and not having looks, so it, kind of, is that apprehension of, “Oh gosh, am I going to go and get loads of these?” And I’ve become so accustomed to not getting them that I’m a bit worried about that, but at the same time I cannot wait to go for a drink. I am so excited for that, like, just to go out, go to a beer garden and have a great time or go to a cocktail bar. Count me in. I will never say no to a night out ever again.
Hannah:
So close to freedom I can taste it. How about you, Emma? Is there anything that’s, you know, worrying you or anything that you’re really looking forward to?
Emma:
Well, I’m looking forward to it all because on Sunday I went to a shop for the first time in about a year. I was shielding because of my heart condition, so it was an experience, definitely. It was all loud and there were people everywhere, and it’s, “Wow.” ( timestamp 00:20:00 ) I’m not used to it now, so definitely it’s baby steps and just doing little bits and getting out more and, yes, I can’t wait.
Hannah:
I get that. For me, I think the only thing I’m worried about is, you know, before all of this happened, I was feeling very confident with getting my scars out in public, and now that we’re coming out of lockdown into another summer, I think there’s a little apprehension about putting that swimming costume on again, but I think, you know, talking to lovely people like you gives me the confidence to go out there and do it and shrug off those stares and awkward questions. It has been lovely speaking to you both, and thank you both for coming.
Atholl:
Thank you.
Emma:
Yes, thank you.
Conclusion:
You have been listening to The Voices of Visible Difference podcast from the charity Changing Faces. If you would like to get in touch, share your thoughts or find out more, you can contact us via the Changing Faces website or follow us on Facebook, Instagram or Twitter.