Heads, heads heads heads heads heads – a song adapted for Covid-19, disability & Viola

Our third week of virtual playgroup – we’ve been in self-isolation for 3 weeks now and books are still coming out. So Mainie & Viola dressed as a mouse and a bat from PESTS – Emer Stamp’s new book, which came out the same day. It’s not super timing, for any author.

Couldn’t think of a pests related song though, so we just went for Heads Shoulders Knees and Toes instead.

Working and home-schooling all from home is essentially impossible, as the child-keepers of the world are all discovering. No sourdough or netflix for us. We had a holiday planned to Brill – just the next county over, but now impossible. Mainie was unimpressed by the news. So we’re taking two weeks off work (as far as possible) and are going to have our holiday at home instead.

Next week perhaps we will be slightly refreshed for virtual playgroup – instagram live, Thursdays at 4 pm.

Lucy Catchpole

Health & morality in the time of corona (exercise is good, except when it isn’t…)

My mother, a devout Catholic, used to say health is the new morality. I am not religious but I think that’s true. We applaud and idolise health as though it is attainable for everyone, as though it is a moral triumph, as though it is something we control.

Fresh air is good, eating fresh food is good, and most of all exercise is good.
We internalise this deeply. But right now a great many of these rules suddenly don’t apply – going out for long walks, going to the gym, is now not good…. staying in is good.

Humans can be inflexible – when we believe something to be “a good thing”, it is hard to reverse that.

I’ve lived mostly in the house, and mostly in bed, for years now. I learnt the hard way it’s the only way to stop my condition deteriorating. And over the past 22 years I’ve seen what a struggle it can be for people to understand and accept that. I struggled to accept it too. Back when I could still use my legs and looked “normal” every conversation seemed to include a recommendation to exercise. I did of course try it –
it was in fact gentle exercise that led me to lose the use of my right leg. (Not something I want to debate I’m afraid.)

This feels incorrect, on a deep level – because exercise is good. Always good. Except when it is not.

Years ago I was forced to accept that though society applauded me for going out, for exercising, doing these things could be the worst thing possible for me. It was a struggle – it still is. The way I live is associated with laziness, moral turpitude. I’m a living challenge to the rules, and that is uncomfortable.

Right now we all have to make a similar adjustment. We are more likely to be healthy if we don’t go out. The cognitive dissonance is challenging.

Lucy Catchpole

Also posted on instagram, 31st March 2020

Reluctantly Homeschooling

So a global pandemic – that was unexpected. For us, anyway. We decided to quarantine ourselves 9 days ago now, and so are homeschooling. Reluctantly. It is intense.

Thursdays are usually our local playgroup, James does the music. So we thought we’d do just songs and a story at the same time as usual – Thursdays at 4pm – on instagram live. We kept singing afterwards and recorded this. There was no rat.

Literally a chair with wheels: International Wheelchair Day

It’s literally a chair with wheels. ♿ Such an obvious, useful invention. I’m fascinated by how such a mundane tool: a chair with 4 wheels attached, can carry the level of emotion & stigma a wheelchair does.

International Wheelchair Day wasn’t on my radar till posts started popping up here last week. I’m not big on awareness days but the cumulative effect of different people posting about their relationship with their wheelchair was powerful.

I’m always intending to post something about wheelchairs & stigma, but it’s a slippery subject. Really it’s disability we’re messed up about, but the wheelchair is literally the universal symbol of disability, so it carries it all – fear, suspicion, disgust. ♿

Having looked it up, International Wheelchair Day seems to be an attempt to combat that – to point out what should be blatantly obvious:
If you can’t walk / have trouble walking, a wheelchair can give you freedom.

And perhaps, reading this, you think yes! It is that simple! Screw it, if you need to use one use it!

Perhaps it all sounds a bit theoretical.

But day after day, people with disabilities and chronic conditions choose not to… they miss work, weddings, family events rather than use one. Because using a wheelchair is identity defining and they know it – sit in a chair with wheels and you are silently declaring yourself “in a wheelchair”. You are passing into a new identity, from which you will not be allowed to return. Walk again, ever, and you’ll be congratulated on your miraculous recovery for years*, or looked at suspiciously, which honestly is even worse.

And they are encouraged in this, by family, friends, and by doctors. Who really should know better, but really, really do not.

They’ll be congratulated for “not giving up”. “Of course what I admire about Jan is she’s never let herself be disabled.” As Jan sits in her wheel-less chair, definitely not disabled, missing yet another evening out.

Because actually, the wheelchair is a magic curse, and “once you get into it you’ll never get out again”. Because life with a wheelchair is all grapes & honey and ease – the lazy choice… 😂🤣😒

.

A Familiar Question…

WHAT HAPPENED TO YOU? A question we hear A LOT, and the title of James’s children’s book, published by Faber this August.

James has been answering this question since he first learned to speak. And this picturebook is about Joe, a young child uncannily similar to child-James 😉 who wants to play but finds himself asked “what happened to you?” instead. A lot.

James’s book isn’t out till August, but we’ve had some wonderful support on Instagram since we mentioned it.

It’s an illustrated picturebook. They’re not long. And it’s a story for young children – it’s funny & (we hope!) charming, not a non-fiction treatise.

But we thought it might be worth outlining the thinking behind it, for anyone interested. Because disabled people ♿ talk about this & other questions we’re asked a lot, but society at large still seems pretty confused about it.

Small children learn from us. If they ask someone “why are you so fat?” or “why don’t you have any children” 😮 we help them understand that these are personal questions. Disability is no different.

When it comes from a stranger, “what happened to you?” can be an intrusive and jarring question. Especially when you’re hearing it repeatedly.

As disabled adults, it’s up to us to decide how to negotiate these interactions. But children are in a different position – they’re guided by adults. We don’t think disabled children should be expected to answer this question if they don’t want to. It’s often up to adults to facilitate that.

There’s been a big move recently towards “own voices” books, i.e Black characters written by Black authors, autistic characters written by autistic authors etc. That’s not to say no able-bodied author should ever write a disabled character. But even people with close proximity to disabled people don’t share our experience of life. There’s a need for books that genuinely reflect a disabled person’s perspective, for both disabled & able-bodied readers.

James is putting his thoughts down for a longer piece here which will be up in a couple of weeks.

Isaac from Sex Education and the Good Old Disabled Baddie

Oh Sex Education, you were doing so well. And then you thought – we are nailing diversity! But what about disability? Let’s do that too!

And somehow it seemed like a great idea to create a disabled character who is sexless, child-like and manipulative. And to make that character responsible for an end of series cliff-hanger that kept the two beloved central characters apart.

The public responded like this


To be clear, this was literally the top result on twitter – I didn’t go searching for it. And it wasn’t an exception. Someone on instagram set up an account which posts the same photo every day of the actor who plays Isaac with his face defaced and “I’m dead cos I’m a cunt” written over it.

Netflix must have gone in with good intentions – the actor who plays Isaac is disabled, quadriplegic like the character. But what’s shocking to me is that while (from my limited white perspective) they seem to have thought about and dodged cultural and racial stereotypes with the rest of their diverse cast, they dive into the worst stereotypes of disability with joyous abandon.

I thought initially – ok they’re aware of a too-good-to-be-true, Tiny Tim stereotype and they’ve thought “let’s not do that” & looked no further. It seemed at first like Isaac was a grumpy cripple with a big personality, which is a well-worn stereotype too.

But the more I watched I realised – this character is a baddie, a good old disabled baddie.

The disabled villain is as old as the hills. Richard III anyone? And Dickens is full of them. For centuries it was just too tempting to use a disabled “twisted” body as a reflection of a twisted soul. And in case the reader / audience were in any doubt, it’s often laid out for us like in Richard III’s monologue – being disabled is miserable – stands to reason it’d make you evil too.

How does Richard III become Isaac of Sex Education? Surprisingly easily… Let’s give Netflix the benefit of the doubt: Sex Education may not be showing us a disabled body as a reflection of an immoral soul like Shakespeare. But the other bit of the disabled = evil equation is pretty much alive and well.

Isaac is quadriplegic, and physically reliant on his brother. Physical dependence is still pretty taboo – we like our disabled people independent and preferably sporty. We’re deeply suspicious of relationships in which one adult is physically reliant on another (for a whole barrel of clusterfucks, see Lou & Andy in Little Britain).

So this aspect of his character needed very careful handling. Instead, his dependence is shown as either child-like, or manipulative.

Isaac uses his physical dependence on other people to manipulate them. This is seriously hard to watch. It’s impossible to overstate how pervasive this cliché is – of the dependent disabled person who makes people around them miserable with their unreasonable demands. How hard it is to escape it. To the extent that those of us who do depend on others tend to keep quiet about this part of our lives.

And with Isaac our suspicion of a physically dependent character is justified – he’s an evil manipulative bastard. He has to manipulate people to get an omelette… manipulating them to more dastardly ends is just the logical conclusion.

Just as Richard’s twisted body makes him contemptuous of the able-bodied people around him, Isaac’s dependency is shown as inherently unnatural, leading him to manipulate people in other areas of life. Like deleting that voicemail. Disability leads to evil.

There are ways this character could have been made less egregious. James & I tried to imagine how different it would have been had he been an amputee. The moments that make him seem most malevolent are centred around dependence and access, and these would be less of an issue.

But. BUT! They still would have created a disabled baddie, dragging the rotten history of disabled baddies along with him. (At a time in the UK when disabled people have had a decade of being demonised.) And outside of the parents, he’s the only baddie – there are other characters with flaws, but they all have some sort of internal life, some saving grace. Isaac is really a cardboard cut-out of a character. He refers to his disability constantly – it’s really all he talks about. We’re meant to believe that after 8 years, this is the sort of banter he and his brother engage in privately:

Isaac: why do you always double-knot my shoelaces?
Brother, jocularly: don’t want you running off, do we!
(Paraphrasing)

This is a brilliant example of a bit of dialogue written entirely for able-bodied viewers fascinated & appalled by this level of disability, who want reassurance. So we get this weird ham-fisted joke. Which would have got pretty old after 8 years, believe me.
One of the best things about Sex Education is the writing, which gives each character in an enormous cast their own internal life, flaws and all. The creators may think they’ve done this with Isaac too. The actor does everything in his power to conjure it, but it isn’t there.

Think of the most hackneyed racial stereotypes there are. I don’t want to drag other groups down in this, so I won’t be specific. But imagine those stereotypes. Would it be appropriate to create a character of x ethnicity as lazy, or y as money grabbing? How hard would you have to work, having dug down into that stereotype, to redeem the character? And why? Why would you create that character in the first place? What would be the point of the exercise?

I believe the manipulative, child-like disabled person is as pernicious a stereotype.

Back to the social media response. A lot of the memes I came across focused on the wheelchair – the burning one of course, but also an undelightful range of videos & gifs of people being tipped out of wheelchairs.

There’s a subversive joy behind these tweets and memes. Sex Education has allowed them to say the unsayable. This character allows them to hate us. Just as Richard III did 500 years ago. We haven’t come as far as we think we have.

Lucy

James has written a book…

It’s a picturebook for little ones called What Happened to You? It’s illustrated by Karen George and it’ll be published by Faber in August this year. We’ll have more information up here in March, before the book heads off to the Bologna bookfair in search of foreign publishing partners.

But for now, here’s Faber’s blurb for the online retailers:

‘The first ever picture book addressing how a disabled child might want to be spoken to.

‘Imagine you were asked the same question again and again throughout your life . . . Imagine if it was a question that didn’t bring about the happiest of memories . . . This is the experience of one-legged Joe, a child who just wants to have fun in the playground . . . Constantly seen first for his disability, Joe is fed up of only ever being asked about his leg. All he wants to do is play Pirates. But as usual, one after the other, all the children ask him the same question they always ask, “What happened to you?” Understandably Joe gets increasingly cross! Until finally the penny drops and the children realise that it’s a question Joe just doesn’t want to answer . . . and that Joe is playing a rather good game . . . one that they can join in with if they can stop fixating on his missing leg . . . Because children are children, after all.’