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.

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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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Happiness is…

…soft lamp light, an abundance of throws, tea sipped at just the right temperature, scribbling on a crisp, clean page, crossing off items on my to-do list, the crinkle of a packet followed by a duet of wheeks, the light glinting off a freshly-polished table, sunlight streaming through the window in the early hours

Permanently Exhausted Pigeon

I always see a meme doing the rounds on social media that says something like ‘I’m not an early bird or an night owl, I’m some form of permanently exhausted pigeon.’ This is probably one of those memes everyone can relate to to some extent. But honestly, I cannot emphasise how much this resembles my life at the moment.

In September I landed myself a new job. This was a huge deal for me: after months of drowning in job applications, keen to avoid landing a job in the education sector, I found something I could really get my teeth into. The only catch? It was full-time. And getting my body used to the rigours of full-time work would be perhaps the greatest challenge of all.

Fatigue is a real sucker. Unless you’ve experienced it, it’s incredibly hard to understand. I am one of these people who can sleep for 12 hours or more and still nap for several hours during the day. And no matter what, I am always tired.

It’s generally acknowledged by the medical community that individuals with cerebral palsy use between 3 to 5 times more energy carrying out daily tasks than those without. On an average day, I walk a good 25 minutes during my daily commute. I also make sure to take regular breaks at work, and will frequently get up and go for a little walk around the office when I can. By the time I’ve come home from work and done the usual bits and bobs around the house, I am wiped. Sometimes, I will push through and make a meal from scratch. Other days, I’ll bung something convenient into the oven, or Ben or my family will cook something for me. By 8 o’clock, I am considering getting into bed. I feel bad about this though, so I’ll usually give it til half ten and then consider going about my daily bedtime routine before finally settling down.

Once I am in bed, I tend to do a little bit of reading, before falling asleep ungracefully, probably with my mouth wide open, snoring for all the world to hear.

Next morning, my alarm goes off at 6.45 and the routine begins again.

I’ve had to have a serious talk with myself regarding reserving my energy and managing my pain. I am awful and stubborn when it comes to admitting I can’t take on the world, but living permanently exhausted is just not cutting it any more.

Pacing is something I genuinely want to work on. I need to banish those guilty thoughts and accept that I am not a superhuman. I need to schedule in early nights, make sure I eat good meals and regularly snack on healthy things during the day to keep me going. Most importantly, I need to work on accepting that this is something I can and will work on.

I am enjoying my job. It is the right thing for me right now. Working in an office means I can sit comfortably with a hot water bottle on my aching back, endless cups of tea, with a view of the city around me. I enjoy the satisfaction of seeing a project come together, matters complete and people satisfied and thankful when it’s all over. I enjoy working with people based all over the world and I am lucky to have very supportive, lovely colleagues who put up with my endless yawning and stretching at my desk. I just need to remember give my body and mind the attention it deserves at all times.

I write this whilst snuggling under my heated blanket. My spine has got it in for me today and I haven’t done anything particularly spectacular. But that’s okay. Because right now, this permanently exhausted pigeon is all that matters, and I am going to make sure I spend more of my time with that in mind.

‘The Girl Who Took a Rocket to the Moon & Other Stories’*

Mental health.

It’s something we all have. Yet none of us seem to want to talk about it.

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‘The Girl Who Took a Rocket to the Moon & Other Stories’ is a book, aimed at adults and children alike, that attempts to break down the stigma surrounding mental health, creating a conversation within which individuals can discuss their own issues with others.

Jenny Eckloff, who wrote the book after seeing a loved one struggle with their own mental health, has written seven short stories that encompass all aspects of mental health. From tackling anxiety, to depression, to panic attacks, Jenny’s book – illustrated by the talented Sammie Ripley – showcases stories that are relatable, yet often poignant.

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Though it capture the multi-faceted nature of the human emotional experience, the book is very accessible. The stories are short enough to be read easily, and would make a great bedtime story for little ones. They address panic attacks, depression and anxiety in an open, non-judgemental way, allowing the characters to overcome their difficulties and with the understanding that it is okay to talk.

A particular favourite of mine – ‘The Fallen Star’ – addresses the difficulties individuals have in seeking help, and encourages others to be there when individuals do reach out:

‘…maybe sometimes, stars need to fall and even though he couldn’t fix it, he just needed to be for it when it did…it takes great strength to ask for help…and it takes equal amounts to fix yourself.’

As someone who made that very first step in addressing my own mental health, these words were particularly resonating. It is hard to seek help, and even harder to actually help yourself. The glossary at the back of the book is a wonderful, concise resource that can be used explaining anxiety, panic attacks, depression and more whilst reading the stories.

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Reading Jenny’s book – alongside Sammie’s whimsical illustrations – is a really lovely, affirming experience, and would make a wonderful gift to those struggling with their own mental health, or the mental health of their loved ones.

Thanks so much to Jenny for letting me review your book: it truly is wonderful, and I hope you continue to break the stigma and taboo of mental health one story at a time.

You can follow Jenny on twitter @Reckless_Winter, see her website at http://www.jennyeckloff.com .

You can also look at more of Sammie’s wonderful illustrations over at: https://www.instagram.com/samsillustration/

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Physios, pain and patience

Well hello, you. I know, I know. It’s been a while, hasn’t it?! I’d say I have a perfectly reasonable excuse, but all I can really say is that old little thing called ‘life’ got in the way. 
I know. Lame excuse. 
Anyhow, just thought I’d let you know about my most recent visit to the hospital. This is following on from my   MSK clinic post, which addressed plans for pain management. I was pretty disappointed;  my beloved acupuncture isn’t on offer where I am now,  and so we decided on a physio/mental health plan.

The appointment finally came around. Though my physio was super lovely, I just felt…well…really underwhelmed. To address the pain the approach seems to encompass a plan for exercise and keeping a record of how this affects pain and/or fatigue, but I am already really mobile considering. I walk a hell of a lot (that’s what not driving does for you), go swimming and gymming when possible,  and at least once a week, and keep active even on my ‘rest days’ as my boyfriend would tell you. I literally do not stop. I am always on the go. And whilst I know some people with pain and musculoskeletal conditions can’t be as active as I am, it just seemed to be an assumption that I don’t do anything,  and so need to increase my activity levels. I was given a few exercises to try and have given things a go, but all in all I just don’t feel like it’s been very helpful. I still have pain even after trying these things,  I still could sleep for days, and I’m still fed up of being told thay exercise is the cure-all even though I do exercise, and lo and behold, I still have cerebral palsy and severe kyphosis.

Sigh.

I am really grateful I got an appointment, and know I am privileged to do so. But I just can’t help thinking this approach is missing the point entirely. Maybe I’m still bitter about not having the acupuncture,  but I just don’t feel this is pain management.  Right now I miss Hull more than ever. 
So, that’s my little ranty update for you. I have a follow up appointment and will mention my concerns. As always, I’ll keep you updated. It’s been quiet on here I know, but thanks for sticking with me whilst I find my feet. I should be back to posting weekly very, very soon
Right, better get back to doing the washing…

Heather x

Happiness is…

…snuggling up in front of the fire, guinea pigs splashing around in a bubble bath, hot steamy showers, the wave of pain relief washing over me, making plans and chasing dreams, wrapping up in a toasty blanket, rain running down the window pane, sleepy smiles, cloudy winter mornings 

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