Blindness, writing, and a not very savage review of It’s Not What It Looks Like by Molly Burke

So let’s talk about blindness and books.

This was actually just going to be another savage review but I thought I’d first write a bit about how NOT to include blindness, or disability generally, in a book.

It all comes back to something that happened a few months ago, in a group for beta readers and critique partners. The woman who wrote this abomination is out there, somewhere, but I think it’s unlikely she’ll come to read this post. If she does… well, she deserves the roasting. She was asking people in the group to critique her blurb for her book which I think she was self-publishing. I think (hope) that this story idea would just fill an agent’s heart with horror and it would be pretty much unsalable, so traditional publishing is probably not an option.

Her story was about a young woman, recently married, who was a sex addict. I can’t remember this character’s name so I’m going to call her Mildred, because that’s a name that tastes of apple crumble.(1) Mildred is in a car accident and loses her sight. Newly blind, she understandably becomes depressed. But here’s where the ableist fuckery gets dialled up to 11. She decides to mosey on over to Dignitas to make an appointment to end it all. Her husband, whom I’ll call Jeremy (because it tastes of jam roly poly) is not all that much in favour of the suicide plan. His response is not to go and find her a therapist and someone to help her adapt to her new disability. He decides to cheer her up by pretending to be a bunch of different people and having sex with her. So, you know, she gets to continue the sex addict thing. This works (somehow), cheers her up (somehow), and she decides not to die after all. The whole thing is a fun little rom-com.

If you’re not appalled by this plot, you probably don’t belong on my blog. Run along now.

A few people in the group said that it sounded fun. Then literally every single person with any kind of disability said OH GOD WHAT IS THIS THIS IS TERRIBLE DON’T PUBLISH IT WTF. We pointed out various issues, such as the implication that the obvious response to becoming disabled is losing the will to live. The implication that disabled people’s lives really aren’t worth much to us or anyone else, and that we need able-bodied saviours to change our minds. We pointed out that if someone has a sensory disability, taking advantage of that fact to deceive them is not cute and loving – it’s abuse. You cannot consent to sex with someone if you think you’re with a different person, even if the person you’re actually with is your spouse. Depression in these circumstances is understandable, but the appropriate response is to get professional help. The hospital would likely refer her to a service to support her and help her adapt (to be fair, I don’t know if this happens in the book, but I suspect it doesn’t). Depressed people typically have a very low libido, so fucking them back to health seems like a dubious plan. Did she not think that having a jaunty little rom-com in which one of the two main characters is suicidal is a bit tasteless?

All of this was brushed off by the writer. So I tried pointing out some of the glaring flaws with how the plot works. Did she really think that Mildred would be so easily deceived? Even if Jeremy is putting on a range of different voices and accents, touch and scent would give him away. What are the odds of all these different people having the exact same body as her husband?

And then there’s the big one. I asked the writer several times if she thought that Dignitas would approve Mildred’s application. Had she actually looked at the requirements? Did she do any research into Dignitas at all? Irritably, she pointed out a case that was “just like Mildred’s”. It wasn’t. Firstly, it was not a young, physically healthy person. It was an elderly woman who’d wanted to end her life for some time. She had several disabilities, and blindness was the most recent one to show up.

Secondly: it wasn’t fucking Dignitas.

This happened under the Dutch system. Because voluntary euthanasia is legal across the Netherlands, many different doctors are involved, and they interpret the law in different ways. Sometimes there are scandals when people disapprove of a particular doctor’s actions – for example, euthanasia in the occasional case of severe and intractable depression. The system in the Netherlands is comparatively lax when it comes to rules about exactly who is allowed to get a doctor to help them end their life. Some people think it is too lax. However, euthanasia in the Dutch system is not available to visitors to the country. You have to be Dutch, and Mildred isn’t.

Dignitas will work with non-Swiss citizens, which is why they’re so well-known internationally. But they are one organisation and they have a particular set of rules. You have to be terminally ill and/or suffering from a completely incapacitating disability and/or suffering from intolerable, untreatable pain. You have to have exhausted treatment options to improve the situation. None of these apply here. They’re not going to assist in the death of a physically healthy young woman who is despondent because she’s become blind. That’s a completely normal response to the situation and most people work their way through it with the right help. What bothers me here is that the writer hasn’t bothered to spend two minutes on Dignitas’ website checking if her plot even makes sense. I really don’t think she sees any significant difference between the aforementioned elderly woman in the Netherlands, and a young, physically healthy blind woman with every chance of going on to live a fulfilling life once she’s come to terms with her disability.

In the end I was on the verge of being thrown out of the group for upsetting this writer, and I decided it was time to leave anyway. I don’t think that “I’m being honest” excuses being a dick, but I do think that if you want to put your work out there you have to be prepared to deal with the possibility that not everyone will like it. My prediction about this story is that it will probably vanish without a trace anyway, but if it does get anywhere, she will be met by the opinions of people less polite than me. Honestly – I really was quite polite. (More polite than you’d assume from reading my unfiltered opinion here.)

So, this is how not to write about disability. It’s possible to write a funny, uplifting book about a blind character. It’s probably possible to write a funny, uplifting book about someone who’s newly blind and is struggling with the experience. But as a sighted person that is not a book I’d consider myself qualified to write.

So who is qualified to write about blindness? Here we get back to the savage review. It’s Not What It Looks Like by Molly Burke is, as far as I’m aware, only available as an audiobook. Which is perhaps fair enough, since Molly Burke is blind and an avid audiobook fan, and hence a good investment for an Audible original. It’s on the short side, but it’s an easy and entertaining listen for when you’re pottering about doing housework.

Molly Burke is a YouTuber who talks about all things related to her own blindness and her overall experience of life.  I watch a lot of YT videos in the morning when I’m drinking coffee and working on my art stuff, and I’m interested in the experience of living with various kinds of disability, so I was drawn to her channel when it popped up. She has an easygoing, natural charisma about her and has a talent for talking to an audience. She also has an extremely cute guide dog named Gallop who appears in a lot of her videos. She collaborates with a great many other YouTubers, and all of these factors have probably contributed to the success of her channel. I have certainly learned a lot from her. I like this kind of channel because it enables people to find out the answers to questions that have probably been lurking about in their minds, without having to ask random blind people whom they meet.

I also feel guilty about that time when I snuggled a working guide dog on the train. To be fair, I did ask the dog’s hoomin if it was OK and he said “yes, she’s very friendly.” I would never distract a guide dog who’s helping his hoomin navigate along a busy street. But I didn’t realise that you have to remain hands-off any time the harness is on, so that the dog continues to understand that harness on time is not random snuggle time. Now I have learned. I just wish that blind people could be guided by a less cute animal.(2) And now I’m running through every approximately large-dog-sized animal I can think of and none of them are sufficiently un-cute for this to work. Damn.

This audiobook won’t tell you much you don’t already know if you’ve watched a lot of her videos, but it’s interesting nonetheless. It goes through her childhood and the surprisingly long time it took everyone to figure out that she really couldn’t see stuff worth shit. Those awful teenage years (being a disabled teenager is the worst. THE WORST. I wonder if there’s ever been a disabled teenager who had an easy time of it), depression, coming out of it, the life she has now etc etc. Lots of fun anecdotes and important squeee guide dog facts.

Then it all goes a bit… The Secret. I get it. Molly Burke is one of those motivational speakers who goes around telling people that they can achieve anything no matter what their limitations. But this part of the book made me cringe. I don’t like the idea that your dreams will come true if you say some affirmations and make a vision board and believe in yourself. Or rather, I don’t like the idea of telling people that it’ll happen. I mean… for one thing it’s just not true. Luck is always involved. It feels empowering when you’re listening to someone successful who’s telling you that you can be successful too if you work hard and believe. That sense of empowerment, that reassuring high, is what people are paying the motivational speaker (or prosperity gospel preacher) to provide. If you don’t believe in God you can just ask the universe for what you want!(3) But it doesn’t work that way, and if you follow this thinking to its logical conclusion, it can lead to some very unhealthy thinking and some very unhealthy beliefs in society. There’s a very significant chunk of this audiobook (I want to say the last hour, because that’s what it felt like, but it was probably much less) that is full of platitudes. Listening to non-sequitur after non-sequitur that said stuff like “When you feel stuck, reach out to that one person who you feel can give you answers… you deserve to find happiness and peace… I know you can do it… it’s not always easy, but trust me, it’s worth it… when life brings you a situation that you think you can’t handle, you just do, because that’s your only option… sometimes what might feel like failure is just the start of something better….” It’s frustrating to me because there’s every reason to want this stuff to be true but it just isn’t. Sometimes people are faced with more than they can handle and they don’t just manage to do it – they fall apart. Sometimes they don’t have that one sage in their life who can give them answers, or they think they do, but that person isn’t a sage after all. Phrases like “I know you can do it,” and “I believe in you” mean absolutely nothing when they’re coming from a complete stranger. The world is full of people doggedly following dreams that won’t happen for them. I actually think that much of the depression of millennials comes from receiving the message that they could do anything if they put their mind to it, and then discovering that it wasn’t true. This is why I don’t like this kind of thinking.

Oddly, Burke’s excitement about having been called in to model for Dove symbolises this for me. She goes on about what an honour it was (and I can respect that – I’m glad that this was a positive experience for her) because Dove is such a body-positive, empowering brand. Dove is what now? The much-vaunted Campaign for Real Beauty was a cynical advertising campaign by a company that wants your money. It wasn’t as toxic as some advertising campaigns are, but any impression that it was empowering is based on a saccharine first impression. What I want to do, as a body positive woman, is get rid of the idea that women’s value is in any way dependent on our looks. I want us to own our bodies rather than needing others to approve of them. Having Dove gather a bunch of conventionally attractive women, who break the norm in one way – freckled or older or a little bit larger (but still gorgeous and hourglass shaped) or in Molly Burke’s case, disabled, does not body positivity make. Let’s not kid ourselves: what Dove did was slightly expand beauty standards to include women who wouldn’t have been accepted to a modelling agency but were by any standard beautiful.(4) Then they put them in their underwear and shoved them onto billboards so that people could approve of them. They weren’t including the vast majority of women in this. They weren’t saying “people should respect you whatever you look like.” They were throwing crumbs off the table and patting themselves on the back for it. But that’s what a lot of “empowerment” looks like. It’s a saccharine, overly-positive message that falls apart the moment you give it any serious thought.

I could have done without that but I appreciate that many others will find value in it. I probably would have done so a couple of decades ago. All in all, I thought this was a good listen and worth my time.

(1) Synaesthesia is a condition where senses get jumbled up in someone’s brain and combined in odd ways. Lots of people see colours when they hear music or look at numbers. My particular form is a bit more unusual: names (first names) have tastes for me. Some of these are nicer than others. I thought I was the only person in the world with this form, but then I read this article. TWO OF US. Although she’s quite wrong: Catherine clearly tastes of peppermint creams.

(2) Not really. Dogs do a great job and I’m not that selfish.

(3) This is the one I find baffling. If you believe in a personal God, especially if that God likes your group of people best, it sort of makes sense to ask for stuff. Asking the universe, on the other hand, is so bizarrely self-centred. You are utterly insignificant. The universe hasn’t even realised you exist, Imogen. It’s not going to get you that promotion.

(4) Then they called it “real women” which is another pet peeve of mine. Models are also real women.

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