“Normal” life came to an abrupt halt and, 5 weeks later, I’m still struggling with breathlessness, pain and exacerbated chronic fatigue.
For those of you who don’t know, I was born with a rare form of Muscular Dystrophy – a progressive condition. Consequently, my lung function is total crap, immunity impaired, and a significant scoliosis causes my internal organs to fight for space.
I’m a seasoned pro when it comes to extended periods of enforced isolation and inactivity, resulting from a lifetime of ill health. Fortunately, I’m more than comfortable with my own company!
In all seriousness, spending your days sat in the same chair, in the same room, attached to a ventilator 24/7, unable to make it as far as the kitchen, let alone leave the house – it’s…really not good!
This latest period of downtime allowed me to reflect on my 33 years – what I’ve learned, and what I want to focus on going forward.
My Life Lessons
Stop caring what others think of me
(because, actually, they’re probably not thinking anything)
I can trace this back to a comment made by a fellow pupil at primary school who told me, “you look normal when you sit down but really weird when you walk”.
I remember it vividly and, ever since, I’ve been painfully self-conscious, particularly about my appearance. But, now I’m ‘old’, I’m trying not to care about the opinions of others, especially total strangers.
Take me as I am or not at all.
Be my true, authentic self
I once had a (sort of) date which ended up in the guy’s completely bare bedroom. In this room was only a bed, some strewn clothes and a copy of, Alice in Wonderland. Rather than attempt to flirt and seduce (yeah, I’m cool), I turned my attention to the book and asked what it meant to him.
His answer made an impression on me:
“I like it because it’s about being open-minded, being yourself, holding onto your identity, and being comfortable with who you are. I’m weird, you’re weird, everyone’s weird! And that’s a good thing, in my view.”
Man, he was…DEEP!
Don’t waste my time, effort or tears on those who don’t care
I think, for most of us, our social circle becomes smaller as we age. And this isn’t a bad thing! On the contrary, you learn who you can be your unfiltered self with, who is willing to tell it as it is, who has your back, and who you can count on when times are hard – the ‘no matter what’ friends and family.
I am guilty of investing too much energy into the wrong people. But, from here on, I will realise my worth and focus only on those who bring joy to my life.
Well, I must now bring this lengthy blog post to a close and get back to my milky tea and digestive biscuits.
I was born with a rare form of muscular dystrophy, affecting my body and physicality. I have a severe scoliosis (curvature of the spine) which, for various reasons, is not surgically corrected. This causes asymmetry and a shortened torso. Joint contractures mean I am unable to stretch out my arms or legs. Furthermore, the muscle wasting nature of my condition results in extremely thin limbs.
Now 31, I look very different from other women my age. My pixie-sized stature is emphasised by the scoliosis. In place of womanly curves, are unwanted and abnormally crooked humps and bumps. This visible contrast negatively impacts my sense of self and makes me feel odd, weird, and self-conscious.
I love fashion but fashion doesn’t love me
Over the years, I have desperately sought to hide my body with shapeless, baggy clothes. Anything resembling a potato sack is a winner. I live in leggings because jeans are a no-go and frankly, they are the next best thing to pyjamas!
Clothing manufacturers don’t cater for my body since it doesn’t meet standard criteria. Shopping is not an enjoyable experience. It is a frustrating and disappointing struggle to find anything at all to fit, let alone look flattering. Most of the clothes I buy have to be returned which makes me wonder why I bother at all – well, simply because I can’t roll about naked!
Accepting my unique body
Do I love, embrace and celebrate my unique body shape? Hell, no! BUT – I have slowly and gradually learnt to accept it. After all, there’s absolutely nothing I can do to change it. So why stress myself out over something I cannot control.
Exercise isn’t an option for me. I can’t go to the gym and buff-up. And why should I resort to cosmetic surgery? Why put myself through pain, trauma and financial strain simply to conform to societies high and unrealistic standards of beauty? Okay, it might make me feel more confident to look a little more like the average woman. Then again, it might not…
Societal standards of body beautiful
Our perception of body image and beauty is arguably increasingly influenced by social media, particularly Instagram. Heavily airbrushed, edited and filtered selfies are everywhere to be seen. With a smartphone, we can all look like a celeb from a magazine spread!
But this is misleading, unrealistic and unattainable. I can’t relate to the pouty, posers of Instagram. Honestly, can anyone?!
Diverse bodies are sadly under-represented in the media. This is starting to improve but there is still a long way to go before the presence of disabled bodies on our screens becomes mainstream.
The 21 year-old who has Spinal Muscular Atrophy Type 2, moved from the Ukraine to England at the age of 6. She currently lives in Bradford, Yorkshire with her Mum and younger sister.
Kat was good enough to talk with me about life with a disability, her experience as a physically disabled model, her growing YouTube channel and the issues she campaigns for.
Spinal Muscular Atrophy
1. Kat, please tell us about your disability and how it affects you.
I was diagnosed with Spinal Muscular Atrophy type 2 when I was only a year old. This is a genetically inherited, progressive muscle-wasting condition.
I was told that essentially my spinal cord doesn’t communicate with my muscles properly. This means that over time my muscles slowly lose any strength they once had.
SMA2 affects all my muscles. This limits my mobility and my breathing. I’ve never had the ability to walk but I used to be able to crawl until around the age of 10. I’m now non-ambulant and a full-time wheelchair user.
When I was younger, I was often in and out of hospital because I struggled to fight off infections. A common cold would often develop into something much more serious. As a result, I was unable to attend school and was home-tutored instead.
I guess I’ve had quite an unconventional, drama-filled life, but I don’t know any different. This is my normal.
Life as a disabled Model
2. How did you become a model and what does this mean to you, as a young disabled woman?
I’ve always enjoyed being creative and experimental with my style. Not only did Instagram provide a platform for that creative outlet, it also encouraged me to express my style and share my life and experiences with people who are leading similar lives.
When I was younger, I had never seen anyone with a disability in the fashion world, and so I never imagined that someone like myself, with a physical disability, could be a model.
One day, Instagram suggested that I follow Zebedee Management. After scrolling through to find out more about them, I quickly fell in love with what they’re all about and instantly knew I wanted to be a part of their family.
I applied after attending a fashion show hosted by Zebedee Management, and was then invited to attend a shoot. I never imagined myself as a model but being accepted by Zebedee has given me a massive confident boost!
Joining Zebedee as a disabled model has made me proud to be able to represent young disabled women, like myself, in the media. This opportunity has enabled me to empower and act as a role model for the younger generation.
I feel privileged to have worked on three wonderful campaigns, all of which are very special to me.
I’ve made it my mission to embrace and love my body after years of self-loathing. It was therefore a really special experience for me, especially to have found the confidence to bare all on camera and share my scoliosis story.
I was fortunate to be chosen as one of their ambassadors, and to work alongside seven very talented people. The four LGBTQ+ campaigners, including myself, were partnered with four incredible artists who painted our portraits. The portraits were then displayed throughout the UK during the Birmingham, London and Brighton Pride weekends.
Our portraits went on to be sold at auction and all proceeds went to LGBTQ+ charities.
Visibility, diversity and inclusion is so important, and I’m so proud to be able to share my perspective and represent those with disabilities in the LGBTQ+ community. Unfortunately I do believe that we are underrepresented and I’d love to improve this by talking about my sexuality more.
It is only two years since I came out, so I’m still learning about myself and the community. I’m very fortunate that my Mum accepts me and my sexuality, although my family back home in the Ukraine are not yet aware.
3. Kat, could you please tell us about your Youtube channel?
I started vlogging because I wanted to share the highs and lows of my life, as a young disabled woman living with SMA2. Not only that; I also wanted to raise awareness of the fact that my life is actually pretty ordinary for a 21 year-old woman, despite being a full-time wheelchair user. I live at home with my Mum, younger sister and our dog named Khloe Kardashian. I love to go out shopping, clubbing, meeting friends and traveling.
I was inspired to start my own Youtube channel after I became obsessed with other vloggers whilst in hospital. Back in 2012, I was subscribed to many of the famous ‘Brit crew’ content creators, such as Zoe Sugg and Louise Pentland. I found myself watching their YouTube channels for hours and I always knew it was something I wanted to pursue.
I’m proud to be a disabled creator and put the platform to good use by sharing my experiences. I hope my contribution offers a realisitic and informative insight into what life is like with a disability, and that society learns to understand us (disabled people) better.
I love the YouTube community and feel like it’s a second family. I can definitely see myself working in the media in the future.
I also love that YouTube allows viewer anonymity. Anyone can observe my vidoes without needing to engage with me directly, thereby eliminating any potential awkwardness.
Some people are curious to ask disability-related questions but are often too shy or afraid to do so. They might be scared of saying something that may come across as inappropriate, or they may not know how to address topics appropriately.
I’m open to discussing most topics, however taboo they might seem. For me, it’s about trying to encourage people to interact and engage with me and my videos, as I love to educate, inform, raise awareness and simply chat with curious folk!
4. You describe yourself as a disability activist. What are the issues that are most important to you?
I grew up feeling super self-conscious about my disability, to the extent I would actually try to ignore it in the hope that one day everything would be ‘normal’. But when you think about it, what is ‘normal’, anyway?
I believe that we should embrace our differences, encourage acceptance and celebrate diversity in all its forms!
I think that society in general still interacts with us (disabled people) in a very condescending and neglectful manner. People are either sweeping us under the rug, or using us as tokens of diversity and not really accepting or understanding our lifestyles. It’s 2018 and frankly, it’s tiring!
I’ve been involved with a number of opportunities, such as speaking on ITV national News about my short film, which I released last year with the help of Fixers UK. I also attended an event in London with FixersUK, where I spoke to sponsors about my film and promoting disability awareness.
I have also presented talks, and held workshops with students and tutors in schools and colleges. As well as participating in panels at the WoW festival, I recently took part in a discussion for BBC 5 Live about how disability can be better represented in the fashion and beauty industry.
I’d like to thank Kat Pemberton for taking the time to answer my questions.
20 year-old Shelby Lynch is an up-and-coming YouTuber from England, who happens to have a muscle-wasting condition similar to myself.
She was recently kind enough to chat with me about her disability, life as a YouTuber and her involvement with the Missguided #KEEPONBEINGYOU campaign.
1. Could you please tell us about your disability and how it affects you?
My disability is called SMA (Spinal Muscular Atrophy). This causes my muscles to become weaker over time. I have a curve in my spine (scoliosis) and am unable to walk, so I use a powered wheelchair to get around. I also need to use a ventilator 24/7 to help me breathe.
2. What have you found to be the biggest challenges of living with your disability?
The biggest challenge of having a disability is having to rely on other people to do things for you. My daily life is affected – I need help with simple things like getting around, eating and personal care. I’d love to be able to do my own hair and makeup.
Also, not having as much independence as someone my age should. Independance for me is key.
3. What, if any, do you feel are the positives to having a disability?
There are a lot of perks! For me, the biggest positive that comes with having a disability is getting to skip the queue for certain things. Sometimes I can get free access to certain places too. But then others do take the piss and charge disabled people more than they would an able-bodied person.
4. Can you please explain why you decided to become a Youtuber?
I wouldn’t say I’m a successful YouTuber but if I’m helping people in a certain way then that’s cool. I started watching YouTube around four years ago. I thought it looked really fun so I decided to make a channel too. On my channel I talk about fashion, beauty, lifestyle and my disability.
Really, I just want to have fun with it to be honest. I want to show people that I’m just a regular 20 year old who enjoys doing what other people like to do. Whether it’s going to concerts or hanging out with friends.
5. Do you consider yourself to be an inspiration?
No, I don’t consider myself to be an inspiration unless I have done something to impact people. People usually call me an inspiration just because I’m disabled but to me, that’s not right.
6. Can you talk about your involvement with the Missguided campaign, and what it means to you?
I saw their campaign on Instagram and really liked the fact they were showing different types of people. So, I took a picture of myself wearing one of their jumpers, and used the hashtag #KEEPONBEINGYOU.
Only a couple of hours later they had reposted my picture. It was so overwhelming receiving so many nice comments from people I didn’t even know. Then somebody from Missguided contacted me, offering to send some clothes, and asking if I would like do a mini photo shoot and video for their campaign which felt like a dream!
Working with them was absolutely incredible! When they asked me if I would join their campaign I was over the moon. It was such a great start to the week. I was a bit nervous as I have never done anything like this before.
But Missguided is a brand that I actually love. And I feel like their clothes are different to any other fashion retailer. The clothes make me feel confident and cool, so getting to work with them was a dream come true.
In addition, it’s great that they aren’t afraid to break barriers by showing some diversity in their campaign. This is something I personally respect so much.
In my caption for my picture I spoke about how disabled people aren’t often seen as pretty or sexy because of their disability, and that’s not the case. We should feel empowered no matter what.
– “Keep On Being You means to be confident in your own skin, and not letting anyone in life tell you that you can’t do anything.”
I hope they ask me to work with them again as it was so much fun and they are certainly leading the way in showing diversity as a fashion brand.
Find out more about Shelby’s involvement with the Missguided #KEEPONBEINGYOU campaign here.