I remember hearing the word ‘disfigured’ whenever I visited the burns unit as a young child.
I went through hundreds of surgeries and hospital procedures. My file was so big it had to be rolled in on a trolley and I would say to my mother, ‘that’s me, Mum’.
Aged just three, falling into boiling water in an accident at home not only left me fighting for my life, but caused a huge hole in my back leaving me disfigured.
I was given my last rites twice and most young children would never be expected to survive something so severe.
In hospital I was often used as an example due to the severity of my burns.
Whenever I went for an appointment, my consultant would call in the student doctors as I was exceptional case study used to help doctors understand severe bodily disfigurement on a growing child.
While most people’s faces and arms were affected, I had third and fourth degree burns on my back, which left me with thick bands of scarring and loss of feeling to certain parts of my body (I still have this today).
This is a label I’m happy with because unlike the other names people have called me, ‘disfigured’ has never been used in a bad or offensive way towards me.
By using this label I got to change the narrative. Plus I had also learned so much about burns that I began to use the label when explaining my scars to nurses and family members.
It was almost as if the word wasn’t used or understood outside of the hospital grounds.
I realise now that when ‘disfigured’ is used in speaking or writing people either love or hate the word, a bit like Marmite.
For me, that was part of the inspiration to set up Love Disfigure two years ago. We aim to raise awareness and support those living with disfigurement and differences.
As much as I believe everyone is entitled their own label, and shouldn’t have words pushed upon them, I want to encourage people to love this term that they may have previously been uncomfortable with.
And I am so proud that it seems to be working.
In fact, I’ve been chosen by Theresa May to receive a Point of Light award, given to volunteers who are making a change in the community.
Downing Street have now given me a title that shows us that no matter how severe your disfigurement or how your mental health may be affected, you can still achieve amazing things.
I can honestly say I love my label. Love Disfigure and I have fought for the positive representation of the label and seeing disfigurement covered on TV, on radio and in articles makes it all worth it.
As long as I continue raising awareness and campaigning for people with differences and disfigurement my label will continue to thrive as I am thriving today.
Labels is an exclusive series that hears from individuals who have been labelled – whether that be by society, a job title, or a diagnosis. Throughout the project, writers will share how having these words ascribed to them shaped their identity — positively or negatively — and what the label means to them.
If you would like to get involved please email [email protected]
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