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.

Realisations

I feel like I’ve been having a mid-life crisis.

No, really.

I thought I’d had my life and career all mapped out: I’m graduating with my MRes (with distinction!) in July; going on to do my English PGCE in September, then I’ll teach. Sorted, right?

Wrong.

I’m not ashamed to say that I’ve well-and-truly changed my mind, at least for now. I’m not really sure if this was a gradual process, or a sudden ‘light-bulb’ moment, but I just know teaching is not the right thing for me at this time. Doesn’t mean it’ll never be. It’s just, right now, not what I want to be doing.

I’d be lying if I said my disabilities didn’t have an impact on this decision, because they absolutely, almost certainly did. I’ve had the unique experience of actually being able to teach before embarking upon teacher training; I have my own classes, mark registers, prepare resources and do all of the other usual ‘teachery’ things that teachers do (except marking…thank goodness). And this unique insight has perhaps shown me that though I may think I’m invincible, and though I do not like to admit that my cerebral palsy can cause issues, it’s a struggle. And, being truly honest with myself, I just think I’m not cut out for the teacher training, with all the rigmarole of planning and marking and studying simultaneously.

There. I said it. I’m not cut out for it at the moment.

know I’m a good teacher. I’ve had several observations from line managers that have been great. And I love teaching. It’s hugely rewarding seeing that ‘light bulb’ flick on; it’s intensely gratifying watching a student mould, change and develop into themselves. It’s a pleasure to watch their confidence increase; to share their successes, and to pick them up when they need a boost. But it’s also hard. Teaching is – in my experience – either really good, or really, really bad. There’s nothing more frustrating that children refusing to listen, or making fun of your lesson that you’ve spent hours planning. There’s been no in between. And at this stage of my life – where I’m eager to establish myself, and settle down – I just need to focus on what it is I really want to do right now.

I feel strangely liberated by this. I thought I’d be bricking it: I am a person who thrives on routine, after all. But it’s finally time for me to really think about what I want to do, and to go out there and do it. And, most importantly, I need to make sure I look after myself.

Sometimes it’s okay to not know what you’re doing right now. Sometimes it’s okay to have a realisation, and to act upon it. I am taking this time for me, and for my body, and for my mental health. I know there will be bumps along the way, but I am excited to see what happens.

 

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

Social Media, ‘Spoonies’ and Speaking Out

Social media changed my life.

This is no exaggeration. There’s no other way to put it. Social media changed my life.

Most of us are well-acquainted with social media and all its forms. Many of us have a Facebook account, where according to the statistics provided by Facebook itself, there are 1.65 billion monthly users with an active Facebook profile (Facebook Newsroom, 2016). Twitter, though smaller, also has impressive user figures, with an average of 310 million active monthly users, and 1 billion unique visits monthly to sites with embedded Tweets (Twitter Company site, 2016). These figures pertaining to social media users are impressive, and are only set to grow as the number and variety of social media platforms increases. I know Facebook and Twitter often draw bad press with regards to ‘trolling’ or cyber-bullying incidents, but I want to share with you my positive experiences using social media, and why I think they really can be a force for good.

I got into Twitter when one of my friends set up my first ever twitter account. I was reluctant initially, but decided I had nothing to lose and so got stuck right in. Twitter seems to polarise its users: most people I know either love it or hate it, but after nearly six years of using that initial account, I can assure you I fall into the former camp, rather than the latter. Twitter – if you don’t already know – is described as a way to connect to others via ‘announcements’ of no more than 140 characters, called tweets, which can also include photos or short video clips. Registered users can create AND read tweets, whereas unregistered users can only read tweets and not create their own, or ‘like’, ‘retweet’ or send direct messages to others on the platform. Tweets are short, snappy and to the point, unlike Facebook statuses, which can be pretty long and lengthy in comparison. Facebook in comparison is great for reconnecting with long-lost friends and family members worldwide, and can be a fabulous place to store all your treasured photos. I also love using the Facebook messenger app, and I am part of several groups where we chat and connect over common interests. Both platforms provide a slightly different social media experience, and though some people have experienced the downside of social media, it has been such an incredible eye opener for me.

Social media is a great tool for connecting communities, and one I’ve become really involved with is the ‘spoonie’ community. ‘Spoonie’ is a term coined by Christine Miserando, based on the Spoon Theory, which you can read about here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . The spoon theory is a way to help explain the daily difficulties living with chronic illness, invisible illness and disabilities, and when I first stumbled upon this term everything started to fall into place. You see, I have cerebral palsy, but for a long time I didn’t want to admit to it. I didn’t understand it, and I felt ashamed and embarrassed of these differences. It was only through looking into the spoon theory and the community of ‘spoonies’ that connect as a result of this that I finally found the courage to come to terms with my diagnosis. I found like-minded people through the #spoonie hashtag, I got to learn more about my condition of spastic hemiparesis and its associated diagnoses, and after years of lack of education about my disabilities, things finally began to fall into place. My ‘spoonie’ experience culminated in meeting up with several of my wonderful twitter friends with hemiplegic cerebral palsy themselves, and I finally felt like I wasn’t alone. There were people who cared about my welfare. There were people who understood my frustration and felt my pain. And I just knew I’d made connections that would last my lifetime.

I feel that some people worry about speaking out and being honest on social media for fear of ridicule. I actually expected to receive a level of scrutiny when it comes to disclosing diagnoses and potentially sensitive information, and almost prepared myself for it. Though I was initially okay with sharing information about my physical disabilities – notably cerebral palsy and scheuermann’s kyphosis – I wasn’t always so sure about disclosing my mental health issues. But there came that ‘lightbulb moment’ when I found that sharing this information wasn’t so bad after all. There was a similar community here; where people with mental health conditions felt connected, understood and that they were being taken seriously by their peers. And then I thought ‘why should I be hiding this aspect of myself? Why should I feel ashamed about conditions I have no control over?’ and I decided to speak up. I decided to be honest; not only with others, but with myself. Being transparent about issues I’d sat on and ruminated over for year felt incredibly refreshing, and genuinely cathartic. I finally felt like I was coming to terms with all my diagnoses, and I’d be lying if I said social media wasn’t integral to that.

In an age where disabled people – and disabled women – are finding themselves under ever-increasing scrutiny, it is my firm belief that we must speak up. Though there have been advancements made with regards to liberatory and emancipatory movements during the twentieth and twenty first centuries, we have a long, long way to go. I myself have been the target of ‘ableist’ abuse, further perpetuated by damaging stereotypes seen splashed across tabloids and inflammatory articles online. We have not reached a stage where disabled people can feel comfortable despite their diversity. Many people are accused of fraudulently claiming benefits, or exaggerating the nature of their conditions for apparent personal gain. It is a constant uphill battle for disabled people to thrive in such restrictive environments, but portraying an authentic experience of what it is to be disabled in twenty-first century western society is one way to seriously combat these issues. I want to continue to grow older knowing that social perceptions are changing, and that I can feel comfortable in my own skin, with my own differences and my own talents and skills to bring to the table. The disabled minority is the biggest minority group globally, and yet we seem to fall so far behind in supporting this group. In a world where more people are exceeding life expectancy and where medical advances greatly improve our quality of life, we need to act now and shape a society where disabled people are unafraid to speak out. And I truly believe social media has a big part to play in all of this.

Social media changed my life. It might just change yours for the better, too.

PS: I have just started publishing posts on My Trending Stories found here, so why not check it out? Don’t worry, I’ll still be posting here, too. Hope you’re having a great day,
Heather x

Sources:

http://www.butyoudontlooksick.com/ (2016)

https://newsroom.fb.com/company-info/ (2016)

https://about.twitter.com/company (2016)

Acceptance: Learning to Thrive

Hello there. I hope you’re having a wonderful day. It’s been fairly productive today which is really good for me; I’ve managed to get some work done, gone food shopping and done general errands, but as a result I’m now slumped on the sofa desperate for bed. It sounds like I’m being a little dramatic, but doing the ‘everyday-stuff’ – you know, the boring Adult stuff – can often be the hardest for me.

I can cope with my university work; I do a research degree at my own pace. I can cope with my occasional volunteering and of course I love writing this. But it’s the everyday things, the essential things that are becoming more and more difficult to keep on top of. Washing clothes, hoovering up, cleaning the bathroom, cleaning the kitchen, preparing and eating meals…these just take me ages and completely wear me out.

By the time I do all these things, my university work  and social activities, I’m pretty much exhausted.

When I was younger I suppose I didn’t realise just how much I relied on my mum and family to do things. Loading the washing machine for example leaves me in agony. I struggle to use both hands, so even just washing pots and pans and hand drying them is a gargantuan effort. Hanging up clothes to dry and then folding them away when you have half a body that doesn’t cooperate as you wish is physically draining.

And don’t even get me started on how I feel emotionally about all this. I can guarantee it wouldn’t make for cheery reading.

When I started university I realised that living independently is difficult. There’s lots of little things that need to be done during the day and when you don’t feel up to it – because of pain, or tiredness, or low mood – it’s all too easy to leave. And thus you enter a vicious cycle of accumulating mess/paperwork/laundry and no one wants that.

I started seeing an occupational therapist for the first time ever this year. I don’t know why, but despite my cerebral palsy diagnosis I’ve never seen one (and the repercussions of that belong in a different post entirely!). Seeing occupational therapists has genuinely changed my life. I never realised I was entitled to living aids. I never understood why I found everything so hard, but it was all explained to me. Seeing occupational therapists has been genuinely fantastic. Initially it was extremely daunting having someone come round to tell me that I needed extra help and things to help me around the house, and I found this hard to admit.

Someone once told me that getting help was giving in, and that’s always stuck with me.

Only recently have I come to realise that getting help is far from giving in; they enable me to live more independently. Using aids – a seat in the shower, a rail on my bed, a perch stool for cooking – lets me do the everyday things when I’m too exhausted to stand up or when I’m in severe pain. I can cook knowing I can sit down. I can grab a rail and get out of bed even when my body is resisting. It’s amazing.

The occupational therapist who visited my flat gave me a catalogue full of helpful living aids and I’ve been flicking through it circling the amazing things available. There’s chopping boards with spikes on so you don’t have to hold food whilst chopping it, and ‘easy reachers’ that mean I can pick stuff up without bending over and being in unnecessary pain. I’m realising I’m finally ready to accept this; I’m finally ready to accept that by getting these things to make life easier I’ll be living my life to the full.

It is not weak to accept help.

I don’t want to limit myself and my choices in life. I want what everybody wants; I want to happy.  I am taking the steps towards acceptance.

I am learning to thrive, and I will get there.

I hope you’re having a fantastic evening,

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