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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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

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

Pain, Pacing and Piggies

Today has been one of those days.

I woke up this morning feeling as if someone had beaten me up as I slept. I tentatively opened my eyes, grabbed for my glasses, struggled to pull myself up out of bed and slowly waddled into the living room.

I just knew how this day would turn out.

Drew handed me a coffee and I swallowed down three pills – codeine and celecoxib – sat on the sofa, and eagerly awaited some relief. I waited. I took out a guinea pig to cuddle (great therapy) and waited.

Nothing changed.

Days like these are frustrating.

The most frustrating thing about chronic pain is its unpredictability. Of course there’s particular activities that are bound to aggravate my back pain – and annoyingly standing/sitting too long is one such ‘activity’ – but sometimes the pain just comes out of nowhere.

I must admit though, I don’t always help myself.

For years I didn’t really face up to the pain issue. I’d do things without thinking and then suffer the consequences. I’d go out shopping in town all day and deal with the fact I’d be up all night in agony.

It didn’t occur to me then how destructive this was.

For some reason, I seemed content with punishing myself. I’d blame myself for having ’caused’ the pain, and then tell myself I had to deal with it. Although I’ve been prescribed analgesia since I was thirteen, I did anything to avoid using it. The pain was ‘my fault’ and ‘my problem’, and I wasn’t going to take the ‘easy’ option by taking some painkillers.

Incredibly destructive (and completely untrue).

I’m not sure when my attitude changed with regards to taking medication (although Drew will probably tell you I’m still incredibly stubborn when it comes to this) but one thing that hasn’t completely changed is pushing myself.
Let me explain.

Mistake #1

Yesterday I went into university and got out a couple of books from the library. I put these into my handbag, and decided to walk home.

Mistake #2

On the way home I pass lots of shops. I rang up Drew (I was feeling peckish) and asked if I needed to pick anything up. We needed milk, so I popped into a shop, grabbed a basket and some milk.

Mistake #3

There were so many things on offer I just couldn’t resist having a look and more and more items ended up in my basket. I got to the till, paid and walked out of the store feeling grateful for the wonder that is Heron Foods (and its vast selection of biscuits)

Mistake #4

I decide to walk the rest of the way home despite the fact I felt like my shoulder was being pulled out of the socket. I had bought far too much but I was already halfway there…besides, asking Drew to come and meet me would be a huge inconvenience.

Mistake #5

I continued to walk home whilst struggling – having to stop every couple of pages to catch my breath – and still this wasn’t ‘enough’ to ring Drew for a bit of assistance. I finally made it home, looking like I’d been dragged through a hedge backwards. Breathlessly, I rang the doorbell and stumbled through the front door, collapsed on the sofa and moaned about my throbbing spine.

Drew made sure to remind me how ridiculous I’d been.

This kind of thing happens far too often. I don’t know why I do this; I know it makes absolutely no sense at all, and of course I ended up paying for it for the rest of the day.

Pacing is a phrase banded around a lot in the spoonie community (see here) and consists of prioritising activities ensuring you don’t run out of energy by doing too much at once. I’m all too aware of this but I haven’t really grasped it yet.

I’m 22 and always want things done now.

It’s difficult to accept that sometimes things have to be done differently, and right now I feel like I’m taking one step forward and three steps back. I think that’s why I’m really struggling. I am trying to get better, but sometimes I really can’t help myself; I can’t shake the desire to be ‘normal’, to not worry about my every activity and how it’s going to affect me.

It’s such a vicious cycle, because my depression and anxiety fluctuates when I’m like this. I really really need to learn.

I’m currently curled up on the sofa wrapped up in a blanket, dosed up on codeine cuddling my guinea pigs and wondering when I’ll change my attitude for good and realise I need to look after myself a whole lot more.

I hope it’s soon.

Heather x

Meds, Appointments and Pain…

…are just a few words to sum up the last few months. It’s really strange. I worked out the other day that I haven’t had a single week free of hospital appointments since I moved back to uni. That’s three months with at least one hospital appointment every week (but sometimes up to four a week).

I am exhausted.

Being perpetually tired is something i’ve had to get used to as of late, and the worst thing is I don’t know what it is that is leaving me so run down. The other day I had my occupational therapy appointment. For anyone who doesn’t know, they basically help you to ‘do’ things better. So in my case – cerebral palsy (right hemi) – they  help me to make sure my hand has ‘reached its full potential’ in terms of coordination and control. As it turns out, I have a pretty powerful grip in my palms, but I find controlling my fingers and other fine motor movements completely frustrating. I can’t pick things up with my fingers  very easily at all, or do up buttons, or cut up my food at dinner, or use my right hand when my left hand is full (getting on the bus with the change in one hand/ticket in the other/personal belongings balanced somewhere on my person is incredibly challenging).

As is the case for many with a disability you learn to adapt to difficulties, and you manage to find a way around the more challenging daily activities. This isn’t always a conscious effort, and as my occupational therapist pointed out I won’t realise I’m making these changes. The adaptations one makes with CP aren’t ‘natural’; they’re not energy-efficient or ‘easy’ movements because they’re not the movements the body is designed to do. I had always read that people with CP expend between 3-5 times more energy than those without but I didn’t quite realise this until the other day, particularly with regards to my own CP.

My therapist gave me a simple task to complete with my right hand; I had to place plastic pegs into holes on a board. This wasn’t a trick and there was nothing sneaky going on: it was just a simple, easy activity.

But not for me.

As I tried to gain control of my fingers to pick up the pegs I dropped them. I then struggled to get the pegs at the right angle if I managed to pick them up (very awkwardly). My elbow was pointing outward, my wrist was curled under, and my whole posture changed; I was so, so intent on completing this activity my head felt like it would explode. Everything about my body was fixated on trying to complete this one little meaningless task, and it completely exhausted me.

and, most of all, I felt like a failure because I couldn’t.

I’ve never done these tasks before, and I’ve never seen an occupational therapist until this year. Treatment was mostly focused on my leg (physio, the occasional neuro and consultant) and my walking, as I had an operation to enable me to do so when I was very small. I think my hand just got a little bit left out on the way, and as a result I’m finding all these tasks impossible and ridiculous and a little bit of a shock to be honest.

Of course I’ve always known I haven’t had good control over my hand, and I often deliberately avoid using it because I drop things and have in the past been made fun of for it (kids, eh). But this exercise drove it all home to me.

It’s hard to live with a brain injury. It’s frustrating when your body doesn’t behave in the way you want it to. And it’s tiring, because not only is it physically taxing but mentally frustrating.

We had a long discussion about Everything, and it was so refreshing because I felt like she really understood me. We discussed the fatigue, and really it’s probably a variety of things combined into one; med side effects, pain-related tiredness, depression, anxiety, CP…and for now that’s something I have to work through. I need my medication. I can’t just stop doing things. And unfortunately neither my pain nor brain (ha!) can switch off for very long.

But most importantly what my therapist made sure I knew was that it is okay. It is okay to feel this way. It’s okay to take rest days, and it’s okay to have a break.

Living with a disability isn’t easy.

It is not okay however to make myself feel bad about all this, and feel bad about the fact I’m tired, or think of myself as a failure, or less than worthy. Because those thoughts just add fuel to the fire.

Having the depression and anxiety on top of the CP/spinal problem really doesn’t help (and I spend a lot of my day feeling sad/empty/guilty/horribly anxious as it is) but I do not need to add to these feelings.

I am not a failure, because I will learn how to do things differently. I will thrive, because I’ve already come this far without the help.

Getting used to everything is taking time, but I think I am getting there. It’s just going to take time.

I am sorry because this is a really rambling, ridiculous post, but (as always) many thanks for reading if you got this far. It means a lot.

Take care of yourself whatever you’re doing; we could all do with a break every now and then.

Heather x

 

 

I am feeling…

A little bit intimidated. Is this what your 20s are about? Do you just float around waiting for an opportunity to pass you by, praying one does and moaning when it actually happens? Are your 20s meant to be about panic and uncertainty and unadulterated fear???

Today all I can think about is what i’m going to do after study is over.

Okay so…what am I actually going to do?! What can I do that will make me feel okay and not in too much pain? How am I going to survive and all that jazz? I’m struggling to cope as it is. Being an adult is ridiculous.

I don’t even know what I need to do to get a job. I don’t even know what I want to do. (No. That’s a lie. I do want to win the lottery and pay for people to take me to hospital appointments and surround myself with fluffy cute animals and buy myself a house and put most of the remainder in the bank and live off the interest. That isn’t too much to ask, is it?? Surely not…)

Is it just me who is this confused? Will this pass? Will someone fix my body so I stop feeling scared about what’s going to happen to it? I do not want to adult today. It is not happening.

Things I’m Loving in October

Hello there, you. Thanks for bearing with me! Today I thought i’d do something a little bit different, and I thought i’d share some of my favourite things that I’ve been loving in October! Since this month has been pretty difficult pain/mental health wise I thought i’d write something happy and positive, because that’s always nice and it’s a good way to remember the past month 🙂

I don’t know about you, but I love this time of year. I love the golden leaves that rustle and tumble all around, I love the misty, sleepy mornings and wrapping up in snuggly clothes. One of the things I REALLY love most is getting to wear my fluff-filled Dr Martens; I am fortunate (or ridiculous…you decide!) to own seven (yes, that’s SEVEN) pairs of Dr Martens. Don’t fear though; I very rarely buy them full price and you can always search them up online and find reduced prices when things are slightly out of season. I own a pair of brown Serena boots, and they are lined with the fluffiest white faux-fur. They’re a great winter boot and admittedly I’ve had my pair for about 3 years now which is really good going. I got mine for the bargain price of £35 (ish) at TK Maxx but you can find them on the DM website here. They are pretty pricey, but they’re very lovely and will keep your toes all toasty and warm.

I also am enjoying wearing my Pascal cherry reds during the cooler months; another Dr Marten boot. Again, these were bought at a lower price (around £65 I believe from Country Attire , although I think the price does fluctuate so just keep an eye out). You can find them full price on the DM website here . Just be aware; if you’re familiar with Dr Martens Cherry Red, the red of these is more like an Oxblood but it is still rather lovely. Plus the leather finish means they’re pretty much buttery-soft from the first wear, which is practically unheard of in Dr Martens! I’m always wanting to add another pair to my collection (they’re pretty much all I wear and I have loads of different styles/materials/colours) and though I know they’re pricey, they do last. I have a pair of Triumph 9-eyelet boots that tie up with ribbon laces, and they’re pretty much like new and I’ve had them for 5 years, so I suppose you could say they were worth the originally hefty price tag of £130 (ish).

Because I live with chronic pain, it’s really important for me to keep warm as much as possible as the cold just makes things so difficult to deal with. I bought a couple of basic fleeces from M&S to slouch around in on ‘off’ days. I know they’re not the most ‘stylish’ thing, but they’re really comfortable and great for wrapping up warm in. You can find them here, at a really reasonable price.

M&S do some wonderful lounge/sleepwear, and I recently bought a snuggly Me to You dressing gown to wrap up in on chilly evenings. It has a hood, and zips up, and best of all it transforms you into a giant Me to You bear…what’s not to love?! They have very similar styles right now, but I cant find the exact one I have…but you’ll get the picture with the similar items here.

Again, a warmth related product. This one is a little bit gorgeous and wonderful, and i’m currently wrapped up in it now. It’s an electric-heated faux fur throw by Dreamland. Not only does this look lovely draped across a sofa, but it’s so toasty and warm when switched on (you plug it in and there’s 6 different temperature settings) and is really soothing when my back pain is getting really bad and my painkillers aren’t working. You can also machine wash it and tumble dry it which is hugely convenient. My dad bought this for me and I am so incredibly grateful. It’s definitely an amazing buy for anyone with pain issues. Find it here.

What are your favourite things this winter?

I hope you’re having a great Thursday whatever you’re doing!

Heather x