M.E's Top Model

Copyright: Hayley Eszti Szucs

Remember not long ago I wrote a post about disability in fashion and another about the work I was doing with Models of Diversity to get disability represented on the highstreet and catwalk? If not, please do go take a read of them here and here. You might even remember I featured the above image of my friend Hayley, another M.E sufferer, blogger, pressure group member and as of last week headline maker. 

Last week she was featured in 4 national news papers, The Mirror, The Daily Mail, The Express, The Daily Star and disability magazine Able 2 UK to share her story of how she became ill and diagnosed with severe M.E (myalgic encephalomylitis) that has left her disabled and needing to use a wheelchair ocassionally.

The onset of Hayley's illness was sudden and shocking. Going from a healthy and fit young woman teaching children in Spain, to not being able to move or talk. She describes it as feeling locked inside herself, an experience that many severe M.E sufferers experience during a sudden onset of the illness or during a crash. Please refer to the articles for more information on how this feels or read one of my recent posts which describes an M.E crash, here. 

And yet at the time doctors had no idea what was wrong with her. All the tests came back inconclusive. Luckily she regained her speech and some movement but was left with pain, exhaustion, cognitive difficulties and seizures. Needing to lie in a darkened room and rely on others for basic care. Which meant moving back home to live with her parents in the UK. 



Copyright Hayley Eszti Szucs

M.E is an illness that has peaks and troughs so whilst Hayley was no longer needing to be hospitalised her condition still left her unable to lead a normal life, or the life that she had planned. As mentioned she now uses a wheelchair when leaving the house, but she needs someone to help push her as she does not have the strength to do so herself and this would leave to post exertion malaise. Luckily she can now mostly manage to do basic things for herself, such as feed herself and wash her hair. However she still has times where the symptoms worsen. Where she needs to lie in the dark or is unable to lift herself up in bed. And will suffer from post exertion malaise after doing something, which varies in severity and length of time, depending on what she is recovering from.

In 2012 she started writing her blog to document her story. In her first ever post she wrote.

 

"I want to share how I deal with trying to be 'normal' and young and continue to do what defined me as a person before I was faced with obstacles.I want to try and incorporate fashion, style and creativity within my blog too"

 

It has since grown into a space where Hayley can advocate for M.E awareness and for disability in general. Challenging people's perceptions of what disability means and how disabled people are represented in society.

 

For M.E awareness day (May 12th) 2014 Hayley published a blog post called the visual campaign, which you can read here. A series of photographs showing her both in her chair and out of it, aimed at highlighting the often invisible side to disability. When she is in her chair, she can be instantly identified as disabled but if she  isn't then society might never guess something was wrong. Despite her still being chronically ill and at the mercy of her symptoms in both situations. 

Over the course of her illness she has realised just how invisible disability is in many influential areas of society. That there are millions of people in the world with a disability of some kind but they are very rarely presented in the media. Or if they are it is separate from main stream marketing. Take for example the Paralympics. The games were meant to leave a legacy of encouragement and inclusion for disabled people but these games were still held separately and nor did they get equal media coverage.

 

It would seem that according to marketing and advertising disabled people have no interest in what they are trying to sell. And Hayley, like many other young women had found that although disability had meant her life was dramatically different that her intetests remained the same and yet people tend to struggle with the fact that disabled people can be interested in fashion and beauty. Like she said in her first blog post she just wanted to be normal.

 

Copyright: Hayley Eszti Szucs

Determined to tackle this attitude and continue the work of her blog Hayley joined the pressure group ran through Models of Diversity, keen to make a difference to the highstreet and the brands she bought from. As her blog has grown in popularity she has grabbed the attention of several stylists and brands who want to style and photograph her. Which altogether has lead to her decision to start modelling and be featured in the national press. In a recent blog post about her experience of being in the press Hayley clarified why she had made the decision to start modelling, saying:

"There was a comment on the Daily Mail article which said models are not important, which I couldn't disagree more with, ESPECIALLY disabled models. We need people to look up to, people we can relate to, and since I've needed a wheelchair and mobility aids myself, I have noticed how under represented we are in the media and in society. I'm doing this to help raise awareness and to show that we are not invisible."

 

The response to the articles has been immense. Especially from people with a chronic illness or disability and in particular those with M.E. We are used to seeing lots of negative press about the illness with incorrect information. Cosequently M.E sufferers get a bad reputation because of it. However since Hayley's story has been published she says:

 

 "The amount of people who have come forward since the articles were published and said how glad they are to see M.E in the press is ridiculous, there were literally hundreds and hundreds. We need to know that people are doing things to help combat the ignorance or misunderstanding of the illness. The illness can strike anyone, at any time just like it did me. I think it gives people hope that we are being seen and being heard and having M.E featured in several national newspapers is a damn good place to start with that!"

 

As you can imagine I am incredibley proud of what Hayley is doing and wish her every success. She has a few shoots and appearances lined up, so I'm wishing her plenty of health and wellness for them. I can't wait to see how this progresses. It would be fantastic to see brands using more disabled people in their advertising campaigns. And not because they feel they need to be politically correct or as a one off 'oh look how brave and inspirational they are' but because they recognise disabled people as valued customers.

 

Please do take a read of the articles and Hayley's blog too. 

 

What do you think? Does the media need to place disability in more influential areas? I know the world needs more Hayleys and I hope you'll all join me in wishing her every success.

 

Sian x

 

All photos in this post belong to Hayley Eszti Szucs and have been used with her permission.