Hi Micky here – first off, can I ask you to just spend some time reading this post, it matters such a lot to me. Trigger warnings for hurtful jokey descriptions related to asthma, diabetes, spinal deformities, cleft lip and palate. Please take care of yourself and consider whether this will hurt you to read the post. If so, please close the post and know I am advocating on behalf of these issues.
This blog post has been about a year in the making, and I have been collecting screenshots/photos along the way. I want to emphasise that it has been more than a year I’ve been thinking about it, but one instance was the final straw and I started planning. Yesterday, a friend had an experience and I thought, I have to write this now.
The problem that I’m talking about is when authors want to make a quippy, jokey statement, have banter-ish dialogue or describe the condition badly for maximum effect and use people’s medical vulnerabilities to do this. I’ll tell you my personal experience and then I’ll share other people’s experiences. What I can tell you is that this hurts. This isn’t about being ‘butt hurt’, I actually think this is gross writing behaviour and perhaps a little lazy in the humour department. Again, I reiterate, this hurts. It hurts people with these medical conditions and what I learnt from my friends on bookstagram that I discussed this with, is that it hurts parents of children with some of these medical conditions. Suddenly, my experience fades and I feel horrified for parents reading these things about their children. Please, I ask, just think about that from a parental perspective for a minute.
I am not tagging authors in this blog post or anywhere that I share it to but neither am I hiding the books that contain instances of this. I’m not about cancelling any author but I won’t recommend particular books that I consider to have harmful representation. I can tell you that myself and few other individuals have contacted authors and publishers about some examples and had good responses. I’ll share that too. After all, this blog post is ultimately about sharing in the hope of reeducating and encouraging change. We need editors to be highly aware of these issues, so that these problems can be removed before publication too. Publishers also have a responsibility here in my opinion.
First up we have Code of Conduct by April White. I have severe asthma, and thanks to a combo of asthma and COVID at the end of last year, I nearly died. I read this before (or DNF shall we say) and showed it to my husband. His words to me were that actually it didn’t make him ‘horny’ when I sit upright in bed overnight trying to breathe, taking inhaler after inhaler; he actually feels scared. Funny that. I do think this author could have made a joke here without using asthma, it was just a lazy way to make the point of humour. What I do want to tell you is that I contacted April White and told her how I felt about this and you know what, her reply was almost ideal. She apologised first of all and she said she would totally take this on board in her writing in future. I would have liked this line revmoving from the ebook, especially considering it’s indie published, but you can’t have everything, I guess.
Next up, I shrink in horror the amount of times I’ve recommended this book and I have two booksta friends who were/would be horrified by this. I have loved this author’s work and so the churned up stomach feeling I have now, has been difficult. I feel guilt over recommending this book to a friend who it directly hurt. That’s on me for missing this when I read it years ago. I’m so sorry for that.
I can attest to the beautiful faces I think of so fondly, of children I have looked after with cleft lip and palate who grow up to be beautiful adults (children’s nurse and academic here). That’s not a throw away comment, they really do have gorgeous faces. In addition, the reference to a spinal deformity in that way is awful.
Sadly, staying on the theme of cleft lip or cleft lip & palate (it can happen together or separately). Another friend shared her experience of reading in horror at the misrepresentation of cleft lip in a child when her child had this too. I can only imagine how this must have felt.
I can tell you that my friend saw ‘monster face’ and that hurt her in respect of her child. I can also tell you from an accuracy perspective that babies and children with a range of cleft lip abnormalities can 100% smile….beautifully. Now you can argue that this was conveying a reaction in the story, I would argue back that this phrasing was unnecessary and highly insensitive.
Now we move onto how diabetes is sometimes flippantly represented in literature, this time in YA. Diabetes may be one of the more common long term conditions the public know about, but did you know that 500 people die prematurely from diabetes every week in the UK (Diabetes UK, 2018)? That really is no joke and yet here we have an awful example but with a really good outcome. Authors and publishers take note, this was the ideal response.
My friend’s child has diabetes and has had some very scary episodes with her child. When she read this flippant comment (that was totally unnecessary), it hurt her so much. She wrote to the publisher who responded by contacting the author, then removing it immediately from the ebook and stating it would be removed from any future print copies. What I can tell you is that there were other asthma jokes in this book too though, that I don’t think were removed.
If you’ve stayed with me this long, thank you. I had four further examples that I haven’t used just because I think this blog post would be too long but in the space of a year, this is what I’ve come across myself or though conversation with friends. That indicates to me that there’s probably a lot of examples, probably other medical conditions too in other books that we know nothing about.
What can we do about this? Both myself and my friend who have contacted authors or publishers have had good responses, so I think that says that readers will be listened to on this. We can only tackle these issues by using our voices as readers and challenging this.
Thank you to my amazing booksta friends who let me use their experiences in this post, I admire you so much.