Charlotte’s Story- Why Do We Need a Disability History Month?

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Why Do We Need a Disability History Month?

 

When I first heard about Disability History month, I did not know what it was, or why it existed. I quickly came to realise that it was an important period of awareness that would teach me a lot about my place in history as a disabled person.

Disability History month, which runs from the 16th November – 16th December, was first created to shine a spotlight on the rights and dignities that disabled people have fought for across history. The month celebrates disabled lives now and in the past, while also challenging myths and stereotypes surrounding our existence. From myths about disabled people being cursed, or being burdens on society, or inspirational spectacles, these historical narratives have deep roots, some of which need to be pulled out and examined.

Disabled figures, including those with Osteogenesis Imperfecta, have lived across history. But many of these figures are not well known. Disability History month seeks to change this.

 

29 Years Ago…

 

My parents had never heard of Osteogenesis Imperfecta until I came out with a broken arm, a broken shoulder and two broken legs. I was born in the 90’s, and the information in the library about brittle bone syndrome was limited to tales of tragedy and disaster. At the time, the absence of information about life expectancy, and what the condition was, made my parents feel very isolated.

My parents felt as though they were the only people in the world coping with this new reality of caring for an extremely fragile new-born. They worried about whether I would have a good life. The stories told about brittle bones did little to ease their worries.

But, the history of this condition speaks for itself: I was not the first to have OI, nor will I be the last. Osteogenesis Imperfecta, while rare, affects 1 in every 15,000. There is a worldwide community of us living ordinary lives while navigating our health condition. Yet, even in 2022, our stories are often conflated in the media with tales of pity and negative stereotypes. Or, only the other side of the scale, we are shown as superhuman for simply going about our daily lives. (The only superpower I have is being able to eat a can of pringles at the speed of a conveyer belt after a night out, which I don’t think is that newsworthy…)

The History of OI

 

Cases of Osteogenesis Imperfecta have appeared as far back as 1000 BC. A mummified Egyptian infant, first believed to be a monkey, had markers consistent with Osteogenesis Imperfecta.

The 17th century priest Nicolas de Malebranche is often credited as being the first person to describe the physical characteristics of OI in his 1688 book and sermon, The Search after Truth. Unfortunately, Malebranche’s descriptions of OI were not compassionate – he referred to those with symptoms of OI as ‘monstrous children’. Nevertheless, records of Osteogenesis Imperfecta have left an imprint on the past.

And as medicine progresses, new discoveries about OI are being made. In 1970’s, there were 4 known types of OI. Today, with advances in genetics there are more and more types of OI genes being discovered

 

Silent Stories

 

Disabilities are all around us and are part of our everyday lives. We have disabled writers from the past, such as John Milton and Agatha Christie. We have activists like Helen Keller. Paralympians. Political leaders. Lawyers. Online influencers (some of whom call themselves ‘cripfluencers’!)

Disabled people are one of the largest minority populations. And yet, we are the least represented on screen. Our stories and histories, simply put, are not being told enough.

And if our experiences are not visible, how do we even begin to challenge the stigmas that surround being disabled? Scope identified that 1 in 3 non-disabled people in the British population feel uncomfortable having a conversation with us.

Our stories matter, and they deserve to be heard.

Charlotte with a sign saying "Everyone has the right to Education"

 

Writing Letters to Our Younger Selves

 

This summer, I went to Belgium for the OIFE’s annual youth conference. It was a brilliant opportunity to meet with friends and to bond over shared experiences. Between beers and games and laughter, we talked about our lives into the night.

During this trip, I ran a writing activity in the park on a hot summer’s day. I asked everyone to write a letter to their younger selves, asking the question: what do you wish you could tell your past self? This exercise was intended to get everything thinking about what we know now that we didn’t know before.

I believe that the past remains important to all of us. It helps us to see the world differently, to learn from our mistakes, to track our progress and achievements.

For me, it is an incredible feeling to think back to the past. Whether its remembering who I was 15 years ago, or considering that there were people, like me, with OI, from various civilisations, living in the world – there’s something quite poignant about it.

 

Are You a Writer? Tell Your Story

 

As part of my work as a lecturer and Ph.D. researcher, I am hosting two, free, fun creative writing sessions for disabled communities in February 2023. One session will be on campus at Bournemouth University (Tuesday 14th, February 2023), the other will be online (Monday 13th, February 2023), you can attend either. Register your interest with me at fodorc@bournemouth.ac.uk. The aims of the workshop address inadequate representations of disability in public media through creative writing.

You can hear more about my research and the writing event at a free, online seminar on Wednesday 16th November at 3pm. You can click the link here.

 

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