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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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Anxiety Depression disabilities General health and well-being Mental Health Problems Mental Illness My Life OCD recovery Things I'm loving Uncategorized

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

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disabilities General health and well-being Informative posts Things Cerebral Palsy and Scheuermann's Related Uncategorized working with disabilities

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.

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Anxiety awareness Books and Literature Depression disabilities General health and well-being Mental Health Problems Mental Illness OCD Product Review Things I'm loving

‘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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disabilities General health and well-being Informative posts Things Cerebral Palsy and Scheuermann's Related

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

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Anxiety Depression disabilities General health and well-being Mental Health Problems Mental Illness OCD

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 

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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

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

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)

Categories
awareness disabilities Events Hull Bloggers tourettes

Backstage In Biscuit Land at Kardomah94*

Hello! This is a post I’m really excited about sharing with you. A few weeks ago I was asked if I’d like to attend a couple of events at a local venue, and when I found out the subject of the events I absolutely had to accept! This was the first of the events (the next is in a couple of weeks)  and is an award-winning show that has received fantastic reviews from critics and the general public. I knew I was in for a treat, but this show completely exceeded my expectations!

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When we arrived we sat for a beer and admired the lovely food coming from the kitchen – the pizzas looked INCREDIBLE – and the atmosphere was really lovely and ambient. Kardomah94 would be a fabulous place for a spot of dinner! The show space was fantastic, and we picked a lovely spot with extremely comfortable bucket chairs.

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Backstage in Biscuit Land is an extremely powerful show, containing equal measures of comedy and emotion. It is a show unlike any other, and is something that will stay with me for a very long time. It was shown as part of the Heads Up Festival in association with the Battersea Arts Centre, which presents some of the most exciting contemporary British and international theatre in some of the best venues in the city of Hull, of which Kardomah94 is one.

Through a mixture of puppetry, comedy and song by the aptly-named ‘Touretteshero’ Jess Thom – and her sidekick Chopin – we are given a poignant and at times intimate insight into life with Tourettes. You see, Jess Thom has Tourettes, which causes her to say ‘biscuit’ 16000 times a day.

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Tourettes is a condition often trivialised by the media. We’ve all heard jokes about people swearing loudly then blaming it on Tourettes, and most of us – myself included – understand very little of the condition, so it was incredibly refreshing to be introduced to something I know very little about.

The set itself was like something out of a dream; huge cardboard cutouts of trees, a loaf of bread, dolphin puppets, an assortment of biscuits and twinkly lights, and as we sat down in our seats we heard a muffled voice projecting a stream of assorted words from the wings. Chopin welcomed Jess onto the stage, and explained that her tics would  – inevitably – contribute to the show and its content. We were encouraged to laugh at the tics if we found them funny, and sure enough some were so unusually wonderful they were difficult to ignore. As is turned out Chopin – real name also Jess – is referred to in that way as a result of tics!

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Jess explained how tourettes is an awful lot more than the media-portrayal of incessant swearing that we’re all accustomed to. Jess needs to have a care plan sheet, which informs a reader of the steps needed to take when she has a fit as a result of the Tourettes and constant physical and verbal tics, which become completely exhausting. This is another of the realities of tourettes we don’t often hear about; sometimes her tics become so intense she loses the ability to communicate with others. This was extremely interesting to hear, and made us realise how hard life can be with constant physical tics. Jess revealed that her vocal tics have also made life very difficult, and recounted a time where she was asked to leave a theatre as she was apparently disturbing others. This was incredibly emotional – in essence the episode made her feel that she wasn’t allowed to be herself – and this really got everyone thinking.

Anyone who knows me will know how personally invested I am in societal perceptions of disability. My MRes explores disability through literature and the impact this has upon cultural attitudes. Though I have a form of cerebral palsy and other conditions – which aren’t always noticeable – I have been treated disrespectfully and without care by members of the public. It can be really upsetting, and Jess’s story really resonated with me.

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The whole show was a spectacular journey of incredible highs and gut-wrenching lows, and when I went to meet Jess and purchase her book and a T-shirt emblazoned with a selection of tics, I was completely overwhelmed. Her work is so integral – so vital – to thousands of people who face prejudice every single day for disabilities they have. Awareness is key; disability doesn’t discriminate. It doesn’t care where you’re from, or who you are. And I firmly believe that sharing experiences is key to advancing understanding of disability. Disability has many faces and forms, and the more we discuss it the more we can begin to understand.  I left on a complete high, and feel privileged to have had an insight – albeit small – into her world.

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Jess and Chopin are currently touring their Backstage in Biscuit Land show around the UK. You can see the tour dates and locations here.

Thanks for having me Kardomah94 ; I can’t wait to visit in a couple of weeks for another fantastic show!

Hope you’re having a great evening,
Heather x