Dis-abled?
Sitting in that small, clinically white room, I felt like the world was closing in. The air seemed thinner and the room much smaller. Had I misheard the doctor?
“Can you repeat that please?”
It was March 2018, I had been struggling with stomach issues for over a decade and had always been told it was IBS and that no treatment was available. I had been desperate for a different diagnosis, one that meant I could be treated and start living normally again. I was a working mum with two young boys and felt like I was at breaking point. A diagnosis, of anything other than IBS, had been what I was hoping for, but…
“It’s definitely Crohn’s,” he repeated, interrupting my fast-flowing thoughts. “We need to start with an aggressive treatment plan. A move to a liquid diet, a course of steroids and we’ll book in regular colonoscopies. Let’s do a gastroscopy and CT scan too and full bloods. We need to be thorough.”
I could feel my heart beating in my chest and wondered if he could hear it. Most of these words meant nothing to me, though they would quickly become vastly overused elements of my vocabulary.
He was one of those very intellectual-sounding doctors whose bedside manner left a lot to be desired. He was delivering this news as if he was telling a child to do their homework – he knew it wasn’t great but, well, this is how it is. I was at the appointment alone and quickly tried to wipe away the seemingly endless stream of warm tears trickling down my face. I’m not sure he even noticed.
“This is of course a life-changing and lifelong condition. You’ll get to know the IBD nurses well, you’ll have a dietician and we’ll keep an eye on you with regular blood tests. You must NEVER miss an appointment.”
He then proceeded to give me cards with direct numbers, recommended charities, helplines and an information pack. I still hoped it had all been a mistake and imagined having to give it all back. That was going to be embarrassing.
I had never met anyone with a disability during my childhood. When I spotted someone in a wheelchair in a big supermarket, or at church, I would avoid looking them in the eye, feeling awkward. Pretending to stare at various milk cartons whilst they passed. Fixating on anything else that stopped me feeling so awkward and unprepared. Growing up in a small town, diversity was limited. My primary school consisted of white, able-bodied, working-class kids. Kids like me. I can’t remember a single child at my primary school who had a visible disability, though I now know that not all disabilities are visible. At high school, it was the same, other than one boy who had Down Syndrome. I was uneducated about disability and at this time the curriculum around diversity was practically nonexistent in my little Catholic school.
At age 23, I found myself standing on the front steps of a pretty, white bungalow. The front garden was well kept and surrounded by colourful flowers. I knocked tentatively. I needed to find a job, I had an 8-month-old son so anything more than part-time seemed too much. The house was a short distance from my own, essential as I didn’t drive then. Was this the perfect position for me? I had applied as a carer for a little girl who had both hydrocephalus and spina bifida; she was ten and had been in a wheelchair her whole life. Butterflies flooded my chest and I was concerned by the speed of my heart rate. I had never attended an interview at somebody’s home before. Imposter syndrome crept into my thoughts, could I even do this? Would the girl be there? Would she be able to talk to me? How would I talk to her? The door was opened by a man wearing glasses, in his thirties with a warm and welcoming smile. He shook my hand and invited me in.
After an interview with their parents, they called Elena and her sister, Lucia, into the room. I stiffened with nerves as I heard the sound of her wheelchair moving along their shiny, wooden hall floor towards the living room. Elena had brown hair, beautiful cheekbones and was wearing a Disney t-shirt and long black skirt covering her legs, she looked me straight in the eye and gave me the huge warm smile that I had seen in her dad, I exhaled. I stood up to say hello to them both and then, feeling silly, immediately sat down. When standing up, I towered over Elena in her wheelchair and her 7-year-old sister, I didn’t want to seem overbearing
“Hi,” said Elena. She was a confident 10-year-old who seemed so much more grown-up than I had envisaged. She began chatting, hardly pausing for breath. She was funny and honest, very honest, which made her all the more endearing. Within a minute of talking to her, I was no longer conscious of her wheelchair. Lucia squeezed in next to me on the couch and smiled. She was much shyer than her big sister. I felt so comfortable with this family, in their home, I suddenly realised how much I wanted this job. Thankfully, I was lucky enough to be offered the position.
Elena was bright, funny, articulate, and determined not to let her physical disabilities restrict her. As a teenager, she volunteered with kids who had disabilities and played wheelchair basketball, whilst studying for GCSEs and A levels. She now has a university degree and is in a happy, long-term relationship. She was raised by an incredible family who taught her that she could do anything anyone else could, there may just be some adjustments to ensure the accessibility of certain activities. I always remember her dad doing a risk assessment of a mountain before she was due to go with school, so that he could pick her up at certain points but so that she was also very much part of the group.
After my experiences with Elena, I felt more confident about disabilities in general. I had qualified as a teacher and was especially drawn to the children in my care who had special educational needs, particularly those with autism. I thought I understood, that I could truly empathise.
Twelve years later and here I was, in a gastroenterologist’s office. Feeling helpless, less than, scared. I could have huge love and respect for people with disabilities, but I had no idea how it felt to be one of them, until now.
The doctor was still talking to me in a language of unfamiliar medical jargon. And even the words I could understand, I struggled to take in. I remember him telling me of my ‘significantly increased cancer risk.’ He was saying things like ‘calprotectin,’ ‘inflammation markers’ and ‘autoimmune disease.’
“Your life will change from now, but we can stay on top of this if you work with us.” Some reassurance then, finally. I wished my husband was there, or my mum. Someone to tell me that it was all going to be fine.
“You can’t ignore this,” he said with a serious tone, interrupting my thoughts..
He was right, things did change. The liquid diet was tough- not eating was much more socially excluding than I had imagined. Despite the lack of food, I gained 2 stone, losing more confidence than I ever knew I had. It was hard to sit at our dining room table whilst the rest of the family ate and I slowly drank my tiny bottle of Ensure milkshake. Always smiling so the children didn’t realise I was struggling.
The steroids caused sleep problems, high blood pressure and chest pain. The physical symptoms of Crohn’s gave me social anxiety, leaving the house was more stressful than it was worth most of the time. I was regularly at the hospital, sometimes several times a week. My life had seemingly changed overnight and the simplest things that I’d taken for granted, were taken away.
Over the following years, different aspects of my health were also affected. Arthritis, a complication of Crohn’s, caused a gap in the back of my knee that allowed a huge cyst to grow. The cyst caused severe pain, falls, mobility issues and eventually nerve damage that is most likely permanent. After a particularly stressful period in a job, whilst my Crohn’s was flaring, I began to suffer with panic attacks and night terrors, which, true to their name, are completely terrifying.
There are mornings I look in the mirror and grimace- swollen body, huge black bags under my eyes and a puffy face. I’m 37 but can feel much older. Some of my current symptoms include anaemia, nerve damage, night terrors, anxiety, chronic pain and fatigue. It can feel overwhelming at times, Crohns has brought with it a host of additional issues that are also invisible to the people around me. I’m not paralysed, I have no genetic condition, I can move and think, I can see and hear, and I am grateful for those things. I am blessed in so many ways and am still the same person I was before, perhaps even a little stronger.
So, what is a disability? Is it an inability to walk, or to walk without pain? Is it an inability to leave the house, or leaving the house but having a panic attack in the car? Is it a life-threatening disease like cancer, or a chronic condition that causes pain, embarrassment, discomfort, and fatigue? I have a disabled parking badge. When I am in a lot of pain, I choose to use it. I can feel people’s eyes on me as I get out of my car, their judgement. They do not see the leg support beneath my boots. “You are not disabled,” I imagine them thinking. “Where is your wheelchair?”
Elena once said to me, during one of our more serious chats, “Everyone sees the wheelchair, but it is not that we worry about. It is the hydrocephalus, the anxiety, the stuff that is inside that nobody sees that is dangerous and causes the worst symptoms.” She was right.
To look at me, standing still, or walking on a good day, other than a slight limp – I look ‘fine’. I smile and laugh. I pick my son up from school, I study, I volunteer. I organise parties and birthday surprises and holidays. There are other days though. There are days when I cannot be more than a few feet from a bathroom. When rolling around my bed in agony is something that I cannot control. When I fall in car parks, at work or at home and feel so vulnerable that it scares me. There are days when my anxiety is so high that I am unable to answer my phone no matter who is ringing- I just stare at it with my heart beating out of my chest, trying to catch my breath and incorporate the breathing techniques my counsellor taught me. There are nights when I can feel something pushing down on my chest, hard, but I am paralysed- I cannot even open my eyes.
I look fine though. I do not look ‘disabled.’ I look like I am functioning. I am functioning. Until I am not.
In which case, they will not see me anyway.
Featured Image: ‘beautiful faces’ by tommerton2010
The body positivity movement has grown in the past decade. Women are escaping the shackles and the voices that tell us that stretch marks are ugly, scars should be hidden, and cellulite is shameful. Beauty and health don’t necessarily align, and for the first time in living memory, we are beginning to see body differences being normalised – in advertising, on TV and in magazines, whether due to a genetic condition, an illness or simply a part of who people are. There are models with vitiligo, downs syndrome, disabled models, models of various ethnicities, older models – the list goes on. Surely, this can only be a positive thing?
Conventional beauty looks different now to how it looked in the 60s, 70s, 80s and even the 90s. Although the catwalks of Fashion Week are often still filled with slim women and men, we have at least moved away from women who look ill and frail, and from a sea of white-only models and women without curves.
Twiggy was one of the most successful models of her generation and certainly had a more androgynous look. This seemed reflective of how society viewed beauty at the time. Other famous ‘beautiful’ women of this era included Jean Shrimpton, Veruschka, Jean Patchett, Sunny Harnett and Donyale Luna – all of whom were very slim women.
Occasionally curvier women were recognised as beautiful, particularly those with curvier hips and breasts. Marilyn Monroe is a famous example. Fast forward to 2021 though and the ‘market’ for women size 18 plus still seems to be restricted to a niche sexual fantasy, rather than there being any normalisation of women of this size. There is still a notable absence of women above a size 10-12 in mainstream advertising, and when the average UK size is currently a 16, there continues to be a gap between who we are and what we see as ‘normal.’
The pressure on models to be ‘thin’ has been widely publicised and discussed. At times, the pressure from the entertainment industry has led to the development of eating disorders among celebrities. There are examples of singers, actresses, TV personalities, models and even royalty who have famously developed anorexia, which is considered the most fatal of all mental health disorders. In the UK, approximately 1 in 100 10-20 year olds suffer with anorexia and that number is rising. Girls are ten times more likely to develop it than boys, and shockingly, anorexia has been diagnosed in children as young as five.
However, underweight people are not the only health concern that is glamorised by the media. Ironically, some advertisers have chosen to embrace the body positivity movement in a big way (no pun intended!) Whilst we are now seeing curvier women in advertising, some of these women are what the National Health Service would deem ‘morbidly obese.’
There is an obesity crisis in the UK, with over 60% of adults classed as overweight or obese. This number is almost 80% for those 45-74 and obesity is also rising in our younger generations, 35% of 10-11-year-olds are overweight or obese. Overweight and obese people are more likely to develop certain types of cancer, heart disease, diabetes and are also at a higher risk of becoming seriously ill from Covid-19. When will our image of what is beautiful align with what is healthy?
The faces of beauty don’t always elicit health concerns though. One of the faces (and bodies) that graced the covers of glossy magazines and men’s calendars alike during the 90s and 00s was actress, model and presenter Kelly Brook. While never overweight, she looked healthy and, what many would consider beautiful. Yet undoubtedly even this woman has been air-brushed by the media.
With almost half of primary school aged children owning mobile phones, the message that we can (and should) edit ourselves is seeping through to our youngest and most vulnerable. Even a basic app such as ‘Gallery’ enables users to make their skin blemish free, can remove freckles, makes eyes brighter and can make faces thinner. When the faces we see on our screens and in our magazines look this way, why wouldn’t others aspire to look like this? When people voted to be the most beautiful people in the world are airbrushed or edited, how can we expect our children not to aspire to these conventional notions of beauty- even if in reality, it doesn’t exist.
To demonstrate, I took a photograph of myself, no filters, no makeup. I then gave myself 30 seconds to ‘improve’ it. These were the results:
This was edited through the ‘beauty filter,’ and so, understood literally, I am more beautiful without my freckles, the lines on my forehead, my current eye brightness and with a significantly thinner face. If it was a full-length picture, I’m sure I could have spent much longer trying to iron out all of my ‘imperfections.’ Yet that wouldn’t be real, and it wouldn’t be me. In the words of Jess Glynne, ‘Why would I succumb to something so unlike me?!’
We’ve grown up in a world where we often believe we are ‘better,’ if we are younger, thinner and often lighter in complexion too. Scars affect most of us at some point in life and stretch marks aren’t reserved for the overweight. Often those considered most beautiful (by many) have hair that is generally straight and shiny, lips that are full, eyes that are large (without glasses) and sparkly with huge eyelashes, and features that are delicate. You only need to pick up a few ‘women’s magazines’ to see the body shaming that still occurs, although it’s now more discrete. We see fewer headlines about stars described as ‘skin and bone,’ or actresses who have ‘gained ’50lbs.’ Now the ridicule is repackaged as faux body positive messages, claiming to be ‘worried’ about the weight gain or ‘drastic change’ of a particular celebrity. I think it’s doubtful that these journalists are actually concerned.
Though to some extent, women in the public eye can’t win, as undoubtedly, any weight loss, weight gain, Botox, plastic surgery, or decision to ‘grow old gracefully’ will be highlighted. And though the criticism may not come directly from the headlines, the insults, abuse, bullying and cruelty instead comes in the form of online trolls – who will generate more ‘clicks’ to the site, more views, higher followings, all while the younger, more insecure population read on in horror. How many women (and men), teenage girls (and boys) are sitting in their bedrooms thinking, ‘If they are criticised for looking like that, what must people think of me?’ The teenagers growing up with the toxicity of social media are in an unenviable position. Singer Lizzo, a body-positive icon, is an example of this. She is confident and beautiful, yet she has been subjected to a barrage of online abuse due to her size, which led her to quit the social media platform Twitter last year.
The ‘Be kind’ movement is growing stronger, particularly in terms of mental health and support for marginalised communities. Support for the LGBTQ+ community is just one of the areas where this is particularly prominent, with Pride events growing in size and popularity each year in the UK (although in the countries where there is the least tolerance towards the LGBTQ plus community, intolerance is actually increasing – both legislatively and socially). Though celebrities are often criticised for getting too ‘involved’ in issues that are considered political, in my opinion people with high profile platforms who want to use them in this way, can only be a positive move towards equality, inclusion, diversity and acceptance.
The modelling world is finally realising that there is beauty in every gender, race and complexion – though curvier models and older models are still very much in the minority. While I don’t necessarily believe that women who are morbidly obese are the ideal candidates for the future face of beauty, neither do I believe that we should bring back the underweight models of the past.
Advertising agencies, especially those online, do seem to be moving towards less conventional idealisations, tapping into the ‘body positive,’ movement and market. An advertising campaign that still stands out to me was Dove’s Real Beauty Campaign and their many other campaigns since – this advertising uses women who are old and young, smaller and larger, of different ethnicities and with different features. This was impactful because it was brave, forward-thinking, and, perhaps for the first time, women saw themselves in these adverts. At this point, the wider public was largely unaware of the scale of airbrushing and photo editing that took place.
According to the Be Real campaign founded by the YMCA and Dove, 64% of children were concerned about returning to school after lockdown because they were worried about their appearance – not Covid, academic pressures or adjusting to changes – but the way that they looked. Our young people need to see beauty in everyone, this should be about more than size or skin colour, beauty needs to mean more. It needs to be real, by not airbrushing what we consider to be our own imperfections and not editing out our supposed flaws, we open up the conventional picture of beauty. By including girls who are a size 16, by making exercise and health fashionable, by not editing out stretch marks or scars, by not making ‘body hairless’ women the only women we see.
We are tall and short, old and young, a mix of ethnicities and complexions, we have afro hair and thin straight red hair and everything in between, we may have vitiligo or alopecia, or glasses or a colostomy bag, a wheelchair or freckles, one breast or two, a missing limb or albinism – and every single one of us possesses beauty. When we widen our definitions, our ‘imperfections’ are simply differences and difference is what makes the world beautiful.