Body positivity may be a message we're slowly starting to embrace, with many fashion and beauty brands taking steps to diversify the models they use. But for burns survivor and founder of Love Disfigure, Sylvia Mac, the industry still has a long way to go. It's not just about age, shape, gender and ethnicity, she argues, we need to see more people with disfigurements and skin conditions.
For now, Sylvia’s taken it into her own hands, this week launching a swimwear campaign to not only challenge the fashion industry to be more inclusive, but also to provide support and encouragement to others living with disfigurements, skin conditions and body imperfections. “I really want the fashion industry to understand that people that are disfigured need to be included,” she explains. “They need to know that we are not forgotten people, we are here to make a difference. That we are strong and we are brave”. London-based photographer Sophie Mayanne, who’s pledged to not digitally manipulate bodies or skin in her photographic work as of October 2017, volunteered to shoot the images, which also include men and children.
Having suffered severe third and fourth degree burns to her back, stomach and legs in a childhood accident, Sylvia was plagued with insecurity for years. Although a talented swimmer, Sylvia admits she’d hold back in races for fear of drawing attention to herself and the scarring exposed by her swimming costume. After years of battling depression, anxiety and post-traumatic stress disorder, she set up Love Disfigure in 2016.
“It was just me wanting to help others get out of the situation I was going through all those years ago,” she says, reflecting on the growth of the Facebook group, which has seen her receive support from around the world, including from former Olympic swimmer Sharron Davies, for her swimming scheme, which helps people with disfigurements and skin conditions feel more confident in using public pools.
Sylvia knows too well the challenges hot weather and swimwear can pose for those with a disfigurement, worried that uncovering it will lead to unkind comments and stares - both of which she’s experienced. Her turning point came when on holiday abroad with her mum a couple of years ago. Sensing a man filming her at the hotel pool, they left for the beach where Sylvia threw off her sarong, strode to the sea and started posing. “The best thing is to either block it out or think positively and smile”.
Sylvia says she’s has been overwhelmed by the “amazing” feedback and reaction she’s received on the campaign so far. For many of those featured in the images, it is the first time they’ve been photographed professionally and Sylvia is clearly proud of what they have all achieved: “To see so many people wanting to come forward and show their skin and not be afraid meant so much to me. Every time I look at the pictures I feel so emotional.”
Click through to see the pictures from the campaign and follow Love Disfigure's campaign on their Instagram.
Chloe, 18
"I suffer with borderline personality disorder and, as a result I have been self-harming since I was aged 13. In my mind, self-harm is an addiction and as with any addiction it got worse over time. The pain I was inflicting upon myself became more and more severe and turned into something more along the lines of ‘mutilation’ as opposed to ‘cutting’.
I’ve heard all of the comments ranging from "your skin is like a reptile" to "it doesn’t look like self-harm scars, it looks like you fell through a pane of glass". I have worked so hard on myself within the last five years and a big part of that is becoming self-loving and forgiving towards myself. I’m in a place now where I have hated myself so intensely for such a long period of time that I finally know that I deserve respect and love from everyone but most importantly, from myself. By showing my scars and being comfortable with them I hope to show people there is a life with/after/while suffering with mental illness and you don’t have to do it alone. My scars don’t define me and where I am now, but what they do show is all the places I’ve been and all the amazing people I’ve met. I may be scarred and imperfect but I’m 100% authentic and real and that most certainly is more beautiful than what this world expects as beauty."
Intagram: _chl.o
Photo: Sophie Mayanne
Kizzy
"I was in a caravan fire on 10th July 10th 2013. I suffered 96% present burns and lost my little finger and the tops of the others. Prior to the fire, I was in an abusive relationship. I felt like something was wrong with me; why did I choose these men that treated me this bad? I felt really down and upset. Because of the domestic violence and from missing appointments, social services took my children away from me and told me to say my last goodbyes to them. I felt like my life had been taken away from me. I felt like my life had ended. I couldn’t get any help. I just wanted to be with my kids; if not in person then at least in spirit so I could guide them.
I remember on 10th July, setting myself on fire in the caravan. Just myself and no-one else. Just to take the pain away that I felt. After a few months I woke up. I didn’t know what was going on. I had been in a coma and died three times. The pain was so bad. I am so lucky to be alive. It's hard for me to see myself as me. The way people stare and the things they say. It’s so hard!
I want to be that mum again. My oldest girl lives with my mum and I get to have her on weekends and some holidays. I find it hard as I have trouble with breathing and pain. Sometimes I just don’t have the energy. I take her swimming when there’s not many people at the pool. I hate the way I look but I know I need to get used to it and try to love the skin I’m in. I love posting photos of myself showing people that I am OK even though I still suffer depression."
Photo: Sophie Mayanne
Cath, 33
"When I was 23, I was diagnosed with an acoustic neuroma and the surgery to remove it resulted in the right side of my face being paralysed. I was left with total deafness in my right ear and the right side of my face cannot move or show expression. I cannot make tears in my right eye, I cannot cry normally and I cannot smile normally, only with one eye. I lost my most important feature, the one I used the most – my smile. I have had to have two complex and very clever surgeries to try and make my face look more ‘symmetrical’ as the doctors called it, or more ‘normal’ as I call it.
I hope that through this campaign and the great work of Love Disfigure, everyone can feel that they have the freedom and enjoyment that swimming can bring along with challenging the fashion industry to become more inclusive."
Photo: Sophie Mayanne
Natalie
"I developed the skin condition vitiligo when I was just two years old. What started life as a tiny white spot on the back of my hand developed into a condition that affected my arms, legs, hands and feet, turning my mixed race skin 70% white by the time I was four years old.
Growing up, I didn’t realise I was different to everyone else. However, things changed drastically during my teenage years when I no longer felt comfortable in my own skin. It was then I began doubting how I looked, comparing myself to others which significantly affected my confidence and self esteem.
In 2014, I underwent UVB Narrowband Treatment, which miraculously helped me regain the pigment in my skin. It enabled me to go on beach holidays, wear shorts in the summer and enjoy the things I once stopped myself from doing.
I have since became an ambassador for vitiligo and have featured on TV, in magazines and on the radio. I also speak out in schools advising on body confidence and the importance of appreciating differences in others."
Photo: Sophie Mayanne
Isabella, 19
"I was burnt as a teenager whilst cooking and am still adjusting to the relatively new changes to my body. I have come a long way from relying on microwave “ping” meals to learning how to cook again without fear. I was told it would be unlikely I would have full range of movement post-accident, but I do! I have recently got back into sporting activities such as rock climbing and swimming. I am a model. My activism stems from encouraging visibility. I openly show my scars and challenge preconceived beauty and fashion ideals."
Photo: Sophie Mayanne
Nikky, 28
"I am an alopecia overcomer who, at the age of 23, gradually lost all my hair on my body suddenly due to an autoimmune disease. I first lost the hair on my head, then total body hair-loss was very rapid. Dealing with the condition was very difficult for me as I started to struggle mentally and attempted suicide. Upon my release from hospital though, I decided to become a beacon of hope in my community by educating young men and women with and without physical medical conditions and mental health stigmas through my companies Pleroma, NikkyO and Elite Islington. I have also embarked on a new challenge to further support hair loss victims by starting a wig line. I have alopecia, alopecia doesn’t have me."
Photo: Sophie Mayanne
Ahila, 37
"I was first diagnosed with psoriasis aged 22 and then psoriatic arthritis at 24. After experiencing severe side effects from medication which impacted my ability to be a mother to my two young children, I chose to seek natural alternatives and live with the psoriasis skin legions. Under the Instagram name @naturallyhealpsoriasis I am challenging the definition of beauty to move beyond having clear skin. I recently took part in a BBC feature titled The Skin I’m In to empower fellow sufferers to also live their lives without letting psoriasis come into the equation. Exposing psoriasis legions has previously been taboo but I am keen to change the societal norm and remind all that no-one has the power to define us."
Photo: Sophie Mayanne
Raiche, 24
"I was 18 months old when I was burnt in a house fire and received 70% burns to my face and body. As a result, my fingers and toes were amputated. I also lost my hair, ear and balance.
I have now started a charity called The R-Chaie Foundation to support adult burn survivors through recovery with peer support activities. As a burns ambassador I am also campaigning for burns awareness and encouraging body confidence."
Photo: Sophie Mayanne
Kira, 24
"It was almost Christmas and just after my 14th birthday when I was in a house fire along with my sister. I suffered 3rd and 4th degree burns as well as full thickness on some parts of my body. On New Year's Eve my mother was told my sister and I would not survive and she may lose one of us. My life has changed so much but I feel I have a newfound strength and want to help others heal and promote positivity.
Sylvia has been such a positive influence to follow and what she does is help me grow in confidence and strength. I’d always be in denial but seeing Sylvia and the people she works with has helped me become able to speak out for the first time."
Photo: Sophie Mayanne
Michelle, 24
"I have had 15 surgeries as a result of a brain tumour, a punctured intestine, an obstructed bowel, a cyst in my brain and a condition called hydrocephalus. I am the creator of Scarred Not Scared Campaign and work as a body confidence coach to help empower people in their bodies. As a body positive activist, I’ve grown a following of over 140k people on my Instagram accounts @ScarredNotScared and @BodyPositiveMemes. I recently completed my first TedX Talk titled “Have You Hated Your Body Enough Today? ” and am due to release my first book soon."
Photo: Sophie Mayanne
Sylvia
"As a child burn survivor who spent my life living with low self-esteem, lacking confidence and depression, I decided to change my life by creating a video in September 2016. With the help of my cousin and his good friend, I was for the first time able to reveal my scars. I didn’t want other people to go through what I went through: suicidal thoughts, alcoholism, PTSD and daily crying.
As an ex-competitive swimmer who was bullied for having scars, I want to share my images with leisure centres to help encourage swimming for everybody. My campaign will reach out to every industry and open up pathways so others can achieve things in their lives whether that be modelling, TV and film, arts, theatre, athletes and more (whereas from a very young age I was unable to sit exams confidently, attend job interviews, unable to talk with anyone other than children or family).
Today I am a Founder of Love Disfigure, ambassador to Art Tribe and Soul, blogger and #ALLin Ambassador to Disability Talk. I have been on BBC Radio across several stations and am about to receive the Beautiful Survivor Award – World of Honours."
Photo: Sophie MayanneLike what you see? How about some more R29 goodness, right here?
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