It’s Thursday again – already! – so it’s time to feature another guest on my blog. This week I’m over the moon to welcome my lovely friend, and fellow Write Romantic, Jo Bartlett. As a bestselling author with Boldwood Books, as well as being an extremely proud nana, and having a million other roles to fulfil, Jo’s a busy woman, so I’m pleased she found the time to accept my invitation to write a guest post. Jo’s written about something that’s very close to her heart, and which features in her latest book, A Change of Heart for the Cornish Midwife. So without any further ado, I’ll hand over to Jo.
We all have that one friend, who can make us laugh with just a look, because over time there have been so many shared jokes you know what they’re thinking without even needing to ask. I met that person, Paula, twenty-five years ago. We were very newly qualified teachers of business and IT at an FE college. My kids laugh so much now at the idea we taught IT, when these days neither of us have any clue how to use Snapchat and the first time I mentioned seeing a meme, I pronounced it with two syllables!
What bonded us first was our sense of humour. If you’re someone who believes in star signs, you might say it’s because we’re ‘cosmic twins’, and because our birthdays are only one day apart. But I think it has much more to do with us being kindred spirits in an entirely different way and not feeling like we really fitted in. We were much younger than our colleagues, but there was more to it than that. We were both trying to deny who we were, hiding in plain sight in our attempts to fit in.
There was no such thing as body positivity back then and, at 5’11” and a size 16, I didn’t look the way a twenty-something was supposed to look, and hiding – in plain sight or otherwise – was incredibly difficult to do. I wasn’t beautiful like my two sisters, and I remember one of them introducing me to some boys she knew as her ‘little sister’. They laughed like it was the best joke they’d ever heard; the idea that I could have been anyone’s ‘little’ anything was simply hilarious. Even thirty years later, I can remember how that made me feel. By the time I met Paula I’d already been in the grip of an eating disorder for a long time. A combination of weird yo-yo diets, where I’d eat nothing but boiled chicken and lettuce, or scrambled eggs and bananas, interspersed with the binge-eating and bulimia that just became a way of life.
All of that was nothing compared to what Paula was facing up to. By the time we met, what had initially seemed to be little more than a limp had become much more serious and it was clear that things were progressing. Back then the diagnosis was unclear, but one thing that was crystal clear was that Paula was determined to deny anything was wrong. If the odd comment I had about the way I looked stung, then she had that tenfold. People calling out comments or asking if she was drunk, when it was obvious she was struggling to walk, were a far too frequent occurrence. It shouldn’t have happened even once.
Advocacy for disability was lacking even more than body positivity. So, what do you do as a person who barely recognises their own body anymore, because it’s letting you down on a daily basis, when there are no role models around to prove you’re not the only person going through it? You deny it’s even happening. Paula did this to such an extent that, rather than say she needed help when out in a workplace visiting some of our students, she carried on as if nothing had changed. When she had a fall, she pretended to herself and everyone else that it was just a slip, and walked around for almost a week with a broken neck, before an x-ray finally revealed what she had done. Even that wasn’t enough for Paula to accept and admit she had a disability, because no one wanted to be different for any reason back then.
For all those people who rail against representation, be it body positivity activism, the LGBTQ+ community, the Black Lives Matters movement or anything else, I’d urge you to think about all the young people out there who do now have role models and advocates looking out for them. It means they can celebrate being who they are, instead of feeling like their best hope is finding a way of hiding in plain sight, with all the damage that does.
On the flip side, disability representation has a long way to go and there are still so many misconceptions about people with disabilities. When Paula and I have met people, and they’ve commented that they didn’t expect her to have such a great sense of humour, it’s breathtaking. I’ve talked about this with Paula a lot, and it seems most representation of disability is either the inspirational type, involving abseiling down cliffs or ascending Mount Kilimanjaro, or a far more grim portrayal that lumps the whole spectrum of disability into a single stereotype. People with disabilities are just that, people. They’ve got extra stuff to deal with, but they are also coping with the same ups and downs of life as everyone else. They are also just as diverse in every aspect of their lives – their hopes, aspirations, likes and dislikes – as every other person. It was why I wanted to write a novel featuring disability as a central theme. I drew a lot on my friendship with Paula to write the story and we even did a Facebook Live interview on the Boldwood Books’ Book and Tonic page, where she spoke openly and honestly about her experiences of disability and how the lack of representation affected her ability to accept her diagnosis. If you want to hear about all of that, including Paula’s experiences of online dating and a whole lot more, you can check out the recording here.
The response to A Change of the Heart for the Cornish Midwife has been phenomenal and some of the comments I have had from people living with disability have been incredibly humbling. But some of the reviews have backed up how far we still have to go. When they mention that ‘such a nice character’ did not ‘deserve a disability’, they’re really missing the whole point. Disability can affect any of us at any time. People with disabilities are not separate or other to everyone else, they span the full cross-section of society and the full spectrum of personality traits. Disability can affect the nicest person in the world, or the nastiest. They are every man and every woman, and that needs to be represented far more fully. Not as a token gesture, or only when they can be deemed inspirational, or to fit an easy stereotype.
During our interview, Paula was asked how she’d like to see disability represented in future, and she talked about how much she loved the Daisy-May Cooper series Am I Being Unreasonable? If you haven’t seen it, it’s brilliant (no spoilers!) and it features a young actor, Lenny Rush, who plays Ollie and has a condition called spondyloepiphyseal dysplasia congenita, which affects the bones of the spine and the ends of the bones. In the series the focus isn’t on Ollie having a disability, but on the fact he is essentially having to parent his mother, and the impact that doing so has on his life and behaviour. He’s just a young boy, dealing with a mother with lots of issues, and disability if anything is a side note, a facet of his life, not what defines him. Ollie is just getting on and living his life, like the millions of other people who live with a disability. That’s the representation Paula wants to see and, as an author, it’s something I’m determined to keep thinking about.
As for the two of us? We’re no longer hiding in plain sight. I finally gave up crash diets in an attempt to try and be someone I can never be, and unsurprisingly my eating disorder disappeared with them. But Paula has done far more amazing things. She’s been around the world, solo, embracing the freedom and opportunities that she has as a wheelchair user, doing things she could never have done, and seeing places she could never have seen had she continued to try and pretend that disability wasn’t affecting her. She works to support young people in crisis and is there for them at times when they are at their lowest ebb.
She also found the love of her life, the world’s cutest chihuahua, Audrey, who has the best eyebrows of any dog in existence. Whilst we’re far too old to talk about ‘living our best lives’, Paula is doing all of the things she loves and the same things she’d want to be doing whether or not she had muscular dystrophy. That’s disability representation in a nutshell. Just ordinary people, doing ordinary things and we need to see far more of it in commercial fiction and other media.
Thanks so much, Jo, for such an amazing post, and for sharing so many photos of yourself and lovely Paula, who I had the pleasure of meeting a few years ago in Leeds. This is certainly a post to make us think. The comments about your nice character not deserving a disability are shocking, but made me wonder how many times we think things like that, without even realising it. I know just what Paula means about Am I Being Unreasonable? too. Ollie’s disability was just part of who he was, and the focus was never on that, but everything else he had to deal with. It was brilliantly done. I’ve seen a few programmes that feature characters with disabilities treated in the same way, so maybe (hopefully) things are finally changing.
A Change of Heart for the Cornish Midwife
A forever love…or a future dashed?
Midwife Ella Mehenick can’t wait to marry the love of her life, Dan Ferguson. They have both waited so long for their perfect day, and they know their future together will be everything they’ve ever dreamed of. But when Ella suddenly and unexpectedly collapses – all plans are put on hold.
Dan just wants Ella to get better, but Ella, so used to caring for others, struggles to accept she needs care herself. She doesn’t want Dan to give up everything for her and suddenly the life they dreamed of seems to be slipping through their fingers…
Once rock solid, Ella and Dan suddenly seem further apart than ever before. Can they find a path back to their happy ever after or will Ella’s change of heart risk everything they love?
About Jo Bartlett.
Jo was born a stone’s throw from the English Channel and still lives near the sea in Kent, with her own family – so close to the South Eastern edge of England that they’re very nearly French – and it’s probably why so many of her books are set near the sea too. She’s made up stories for as long as she can remember, but never really took it any further. Concentrating on her career and family, writing went on the back burner until a catalyst called cancer gave her a major kick up the proverbial. She decided she was going to write that novel after all.
Since having her debut novel published in 2015, things have happened quite quickly and she has recently released her twentieth novel. She’s been able to fulfil a childhood dream of walking into WH Smith and buying a book with her name on it and still finds it almost impossible to believe that her books have been bestsellers on Amazon too. She writes contemporary women’s fiction, with a focus on love, friendship, family and community, and loves that her ambition to make a living from drinking tea and making stuff up has finally come true.
If you’d like to know more about Jo and her books you can follow her on Facebook, Twitter, and Amazon.
This Post Has 2 Comments
Yayyyyy Audrey made the cut! Jo, I can’t thank you enough for this book, I know it was a huge risk to take and I’m so happy that the response, overall, has been positive. What a shame the message that disability doesn’t discriminate hasn’t got through to everyone! Nice or nasty (I straddle the in between!) it can happen to anyone at anytime. Let’s hope, one day, this filter’s through to everyone!
Ps… Hi Sharon! Hope you’re well, let’s all catch up again!!
Hi Paula! It’s been a long time – frightening how fast the years go by. Audrey is sooo cute! I think Jo’s done a good thing, highlighting these issues in her book. A change of heart from everyone is long overdue. Thanks so much for popping by and commenting. It’s lovely to hear from you xx
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