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Cerebral palsy disabilities My Life Things Cerebral Palsy and Scheuermann's Related

IWD 2020: embracing identities, embracing intersectionality

I wrote this post for International Women’s Day 2020: I hope you enjoy (even though it is exceedingly late!)

I’d be lying if I said I have always been comfortable with my identity as a young, disabled woman. I recall my schooldays with a mixture of sadness and regret, where I spent most of my time anxious, desperately trying to hide any evidence of my disabilities. At an age where you are so set on ‘fitting in’, claiming and taking pride in this element of my identity was not at the top of my priority list.


Disability is not a new thing to me.


Born at 2lb 11ozs, and decidedly purple in colour, I was susceptible to a myriad of illnesses and dangers. One thing that hadn’t fully developed was my brain: initially I was diagnosed with a brain injury of sorts (the details are sketchy), and my parents were never really privy to the details. When it came to ‘reaching milestones’ I fell short, and was easily compared to my twin brother. When the initial diagnosis of lead poisoning was ruled out, we were told I had cerebral palsy. I’d need an operation, physio, occupational therapy and monitoring throughout my childhood.

My parents didn’t ask too many questions: doctors were blasé about this diagnosis, which seeped into my parents’ consciousness. So, though littered with appointments, I was brought up as if there wasn’t anything to worry about. Pain was explained away by doctors as growing pain: and though I writhed in bed screaming some nights, I was told to take some ibuprofen and grit my teeth.


At the age of thirteen, mum took a photograph of me on Floridian sand, where the sea stretched for miles and miles and the sun kissed my hair a golden blonde. This photo unknowingly captured another aspect of my cerebral palsy: my increasingly curved spine. When I got home, try as I might, I couldn’t stand up straight. With tears in my eyes, it was back to the doctors I went.


Being diagnosed with Scheuermann’s Kyphosis – a deformity in my thoracic vertebrae – led to more hospital
appointments. Surgery was banded about, but a spinal brace was the preferred option. Wearing this restrictive plastic shell around school was a real challenge. I couldn’t get into my own bed, my clothes didn’t fit, and my increasing pain was dismissed by consultants. I felt so badly about my body and what it was that I was engulfed by shame: disability was not something to take pride in. It was messy, chaotic and unpredictable. And living with an uncooperative body wasn’t something I wanted.


They say people go to university and ‘find themselves’, and although this is admittedly a little cliché for my liking, I can’t deny the fact that university was instrumental in me coming to terms with my disabled identity. It was here I first learned of disability rights, and of those who came before me and fought for their rights to a happy and fulfilling life, disability and all. I read the work of Rosemary Garland-Thomson, Elaine Scarry and Frida Kahlo, who championed disability, and portrayed it as a variant of ‘normal’. It was here I learnt that disability was not the undesirable attribute I thought. It was simply part of me, and part of who I was. And I finally felt like I had permission to embrace my disabled womanhood.


When we celebrate International Women’s Day, we must remember to be intersectional: we must remember to celebrate all embodiments of women, and what we have achieved. We must remember BAME women, disabled women and LGBT+ women, as we continue to fight for better gender diversity, equal rights, and the right to embrace – and be completely proud of – our identities as women.


There’s no denying that there’s a way to go. We’ve made strides in this space, but there’s always more we can do. We must advocate and champion women from all walks of life around the world. On International Women’s Day I hope you are able to celebrate and uplift the women you know. We each have a story, and have each faced adversity and obstacles. I know that, despite these difficulties, we have the power to shape the lives of women everywhere.

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Books and Literature disabilities Events General health and well-being Mental Illness The Spoon Theory Things Cerebral Palsy and Scheuermann's Related

Disabled, Diverse and Talented: a snippet from the Children’s Media Conference 2018

Earlier this year, I was fortunate enough to speak at the Children’s Media Conference on behalf of Inclusive Minds. I used this opportunity to discuss the importance of authentic representation in literature. This is something I am incredibly passionate about, having studied literature at university, and this event gave me the opportunity to speak with like-minded individuals working in the media.
I just wanted to share the transcript of my talk with you. I hope you enjoy learning a bit more about my motivations for disability advocacy and campaigning and the profound effect representation can have on validating and acknowledging an individuals’ differerences.

A kindle cover made of fabric covered in books

Disabled, Diverse and Talented: Media, What Are You Waiting For?

Diversity: it’s the word on everyone’s lips right now. And – whether you like it or not – the word is well and truly here to stay. Employers are asked to make sure their workforces are diverse; creatives are reminded that their content is diverse, and, perhaps more importantly, that it can be accessed by a diverse audience. As the field of disability rights becomes more and more prevalent, and as more people are finally becoming aware of the ableism and disablism that disabled people are subjected to, diversity is becoming an integral part of everyday conversation. So, that begs the question: as media professionals, what’s in it for you?

A story I often tell at events like these is a very personal one, focused on my own experiences of university studying English Literature. I’ve always been an avid reader, so a degree that consisted of hours and hours of reading seemed rather apt. I’ve always found books fascinating: I was captivated by the way that narratives were so carefully crafted and interwoven, and the ways in which such intimate expressions of the human experience can be portrayed through words alone. During my second year, I chose to take an extremely popular module called ‘Classics of British Children’s Literature’. I was expecting this – probably naively – to be a nostalgic trip down memory lane, but instead, it completely changed the course of my studies. We were asked to read Hodgson-Burnett’s The Secret Garden, something I was aware of during my childhood but not something I really ever read; or at least it wasn’t anything that really had an effect on me. I remember – incredibly vividly – sat in the newly-refurbished Brynmor Jones Library and stumbling across the following: ‘…he is a hunchback…[and] it is horrid,’. What I haven’t mentioned yet, which is very integral to my story, is that at the age of 13 I was diagnosed with Scheuermann’s Kyphosis, and I remember the words thay came out of the consultant’s mouth on that fateful day: ‘You have vertebral deformity…a hunchback, if you will,’. This, alongside my pre-existing form of cerebral palsy came as a real blow to me. Stumbling upon those lines brought that familiar sinking feeling washing over me. My cheeks flushed red. I felt a deep-seated shame emanate from the pit of my stomach: those days stood in front of the floor-length mirror trying to desperately straighten my back to no avail. For a long time, I hated the way my back looked, and amongst those pages, those words really hurt. what was worse about this, was that when I came to discuss my issues surrounding this book in the seminar that week, no one really batted an eyelid. Whilst I accepted that the book was written for early 20th century readers, I found it hard to accept that my concerns were not being addressed by my lecturer in 21st century Britain.

It’s said that there is no friend as loyal as a book, but right there and then, I felt betrayed by one of the things I loved the most. I’d worked for a long time to get to a place where I was comfortable and happy with my body’s differences and appearance. But those words spoke loudly to that internalised ableism I’d carried around with me for years, something shared by the majority of the disabled population. After my experience in that seminar, I made it a mission of mine to search out for more accurate representations of people like me. I wanted to find characters in pages and on stages that had disabilities and lived their lives in either ordinary – or extraordinary – ways. Maybe they were embroiled in a dramatic family saga, or went on fantastic adventures. Where were the protagonists who got up and lived their lives embracing their disability rather than following the typical narrative trope of bitter and twisted individuals desperate to be cured?

A woman stood at a lectern wearing green dungarees pictured mid-sentence. Next to her is a large board covered in pictures and there's a large screen on the right of the picture with a powerpoint presentation

We all know that media is one of the most powerful forces in the world. I’m sure most of you attending Children’s Media Conference are here because you are creative individuals with grand ideas and a view of changing the world, no matter how small. You strive to create a world of fun, education and interest for children. You know how much your creations have the ability to impact upon young children’s lives. You work to harness that spark of imagination within individuals’ eyes, and want to watch it grow into a fire roaring with enthusiasm and excitement. We all know that there is nothing more validating than seeing a reflection of your true self – differences and all – captured through the written word or lit up on a television screen. It paints a picture and conveys a message that says that you matter, you are worthy, and that, most importantly, your life and experiences matter. Nothing quite beats that.

This experience was perhaps the main catalyst for commencing a Master of Research postgraduate degree where I made it my goal to uncover lesser-known literary portrayals of disability that were more true-to-life and accurate in their manifestations. Imagine my joy, then, when I came across Emma Henderson’s protagonist Grace Williams, a girl with the same type of hemiplegia as me and a spinal curvature alongside it.

Behind the scenes and screens is a good place to start cultivating these characters and representations that have the power to bring so much validation and happiness to children and young people. I do not think it’s a prerequisite to have direct experience of each of the many facets of diversity to render it into media, but we need to acknowledge that consulting those with real, lived experience adds authenticity and insight to your creations. When you employ a disabled person, and ask them for their honesty and opinion with regard to ascertaining an accurate representation of their lives, you are unlocking a plethora of knowledge, which – when transferred and translated into whatever you’re creating – has the ability to validate the lives of thousands, if not millions, of individuals.

A woman stood at a lectern wearing green dungarees. You cannot see the front of her face. Next to her is a large board covered in pictures and there's a large screen on the right of the picture with a powerpoint presentation.

Now is a good a time as any to make truly positive changes, and in turn to shape perceptions and enrich the minds and lives of children and young people. I longed for characters to be like me when I was growing up, but they never materialised. However, organisations like Inclusive Minds – for which I am an Inclusion Ambassador – gives authors, publishers, agents and other creatives the opportunity to find out more about the lives experience of under-represented individuals, can help make this positive change a reality.

I know your work is devoted to making children’s lives richer by whatever means possible. You truly have the ability to enact real, meaningful change in your fields.

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awareness disabilities Mental Health Problems Mental Illness My Life The Spoon Theory Things Cerebral Palsy and Scheuermann's Related Uncategorized

Disappointments, Direction and Decisions: Visiting the Musculoskeletal Clinic

Yesterday felt like a big, anxiety-inducing, sad-making day.

I woke up early knowing I had to attend my MSK Clinic appointment with butterflies in my tummy and a raspy dry throat. Perhaps it seems a little over dramatic to feel this way, but I’d be lying if I said I wasn’t anxious.

Truth is, I had been waiting for this appointment for months, having had to be re-referred to a different service in a different part of the country since moving back after my university studies. This appointment would determine what kind of support I’d be entitled to back in my hometown, and having got used to the routine and effectiveness of treatment back in my university town, I was extremely anxious at the prospect of having no support at all, which seems like an exaggeration, I know.

You see, it is very much a postcode lottery when accessing healthcare.

As much as I love the NHS, I must say there really is a huge difference with regards to provisions and accessibility depending on where you are in the country. It’s all a bit touch and go with certain services, as each have different approaches. Back in East Yorkshire I’d been lucky enough to receive frequent acupuncture treatment, excellent mental health treatment through several talking therapies, and access to a neuro consultant, occupational therapy and physio. Though I’d seen a physio and neurologist a long time ago back home, I hadn’t ever seen an occupational therapist despite having cerebral palsy. I also hadn’t had frequent acupuncture, or had monitoring of my curvature since the age of sixteen. It made me anxious to think all the fantastic progress I had made in Hull could possibly be stripped away just because the services and provisions aren’t available here.

All of this explained the butterflies and raspy throat, I guess.

As I suspected, things have changed. Much to my disappointment, they don’t offer acupuncture here. This was a little hard to swallow (and accounts for my exclamation of ‘oh no!’ in the consulting room) and though I was offered facet joint injections back in East Yorkshire, I was told I probably won’t be able to have them over here for a few years owing to my age. I might also have to consider a spinal fusion in the future (eek!) so they’d want to reduce steroid exposure to a minimum.

Again, fairly disappointing.

It’s not all bad, though. I will be discussed at their monthly review -‘they’ being made up of doctors, spinal consultants, neurologists, nurses and pain management specialists – and it is likely I’ll be able to access support to help with the mental struggles of the cerebral palsy and scheuermann’s, which is really quite exciting considering this aspect has never been discussed. I’ll also have specialist physio, with therapists who know the condition, and will be able to advise me accordingly, a change from the ‘I’ve never actually seen scheuermann’s in a person before!’ physio I’ve had previously. So, I’m feeling a bit mixed-up about this one. I am seriously gutted I can’t have acupuncture, and will be looking into private treatment options.

However, I am feeling a glimmer of hope, and really feel that the mental health focus will help. It is also lovely to know I am not alone, so a big thank you to Ben for coming with me to my appointment. This is a start, and I have at least some direction, and I’ll just have to hang tight and see what’s in store.

I’ll get there, I’m sure.

Sending warm bear hugs on this chilly day…

Heather x