Try treating disabled customers as customers, world? Just a thought.

There’s a presumption – a very widespread, deeply rooted one – that disabled people should be grateful for anything we get. Whether that’s tech or a new tap, representation in books, or a new wheelchair.

When we’re used to seeing disabled people in the context of charity, is it surprising if that affects the way people deal with us? 

We’ve had a week of totally avoidable disasters, all coming at us from the outside. Everyone can have bad luck. But we do have a LOT of bad luck. Plumbers, gardeners, salespeople, tech shops (not even going to go there rn).

We pay the same as everyone else, but I don’t think I’m imagining that the starting point is often different. That it’s not going to matter if a workman smashes a few of our things, or what day they turn up.

Or what’s a year or two, when it comes to fixing the stairlift so I can get to my daughters’ bedroom?

I think more and more people now accept the idea of microaggressions – small, difficult interactions which are hard to pin down as racist or ableist. The million presumptions we make about people from first impressions, which then set the way we deal with them.

The impossibility of pinning them down is what makes them so slippery and confounding.

I just saw a post that said something like: stop applauding able-bodied people for being friends with disabled people. We’re not charity cases.

Which should not need saying, but yes.

But also – if you’re a business, could you please see your disabled customers as customers? Especially as we, erm, actually are. And we pay, just like everyone.

Don’t presume our houses matter less to us. Or our email systems are less important to back-up.

I was buying a very important dress once.  The lovely dressmaker said her friend had told her not to do it. Not to take the job, just based on the facts of my disability. She thought she’d get sucked into some situation… I don’t know. I just wanted to buy a dress.

Disability does not = charity. If you can’t provide us with the same level of service you would to anybody else, maybe just steer clear.

The end.

P.S One day we’ll clean this mirror. But the smears work like a real life filter so…

Lucy Catchpole

What Happened to You? A cover reveal

What Happened To You is written by James Catchpole and illustrated by Karen George, it’s out April 2021 from Faber & Faber

This is me. A few years ago admittedly! I’m an agent for kids’ books – I edit & sell my authors’ stories, & had no plans to write one myself. But I’m also disabled & keenly aware of how few good books there are about disabled children. So eventually, I bit the bullet & wrote my own story.

(πŸ“š You can pre-order it here

This is my story in both senses – I was a disabled child just like Joe on the cover here. And writing Joe’s/my story has confirmed for me the value of Own Voices. β™Ώ It’s not just the direct experience of being disabled that I can draw on, it’s that I aim to centre both disabled characters & disabled readers in my writing.

For instance, when I started to think about having been a disabled child, my first instinct was to reach for the feelgood, show-offy stuff: all the praise I got for climbing trees or kicking footballs. That would have been a story to show that, look, disabled kids are cool too. Stories like that already exist, almost always written by non-disabled authors, for non-disabled children. And to be honest, they don’t say much.

Then I realised what I really wanted to write was a story for my younger self – for a disabled child – that would speak to what’s often hardest in many disabled people’s lives: being treated differently by other people, & specifically, being asked The Question ⁉️ For disabled adults, being asked ‘what happened to you?’ by strangers at the bus stop or in the post office queue, can be a daily annoyance. For a disabled child in the playground, it can be relentless.

And yet we’re conditioned to feel like NOT delving into the most personal, private, often traumatic parts of our history and identity, to satisfy a stranger’s passing curiosity, would somehow be rude. I was in my 20s before I figured out what utter rubbish this was. So this story is for me aged 5, to let me know I was well within my rights to say SHARK 🦈 or CROC 🐊 & have done with it!

And of course, by writing from a disabled perspective, for a disabled reader, I’ve realised that I actually have something meaningful to say to non-disabled readers – & their parents – too.

James Catchpole

What Happened To Youβ™Ώ is out April 2021

Image description:

A jpg image of the illustrated cover of WHAT HAPPENED TO YOU? It shows a boy of 5 or so, he’s standing on a swing, half-smiling and winking. He’s clearly got just one, left, leg – his shorts are tailored neatly around where his residual limb would be. He is white with blondish hair. It’s a children’s picture book, and the names James Catchpole and Karen George are at the top.

Disability in kids books – a list by two disabled people in publishing

Introducing our 6 favourite kids’ books featuring disability, picked by actual disabled people working in children’s publishing. (Ahem. Us.)

A pile of books with two small girls - our daughters - just visible playing on the wheelchair in the background.
Text reads: Disability in kidlit: our top 6.
The list of books under this is exactly the same as the list in the body of the text.

We’ll be posting a full review of each of these books weekly here and on instagram – watch this space.

Own voices books are marked *

El Deafo *

Mama Zooms

This Beach Is Loud! *

Frida Kahlo: Little People, Big Dreams

A Kids’ Book About Disabilities *

I Am Not A Label *

Our main, overarching criterion was this. If our girls were disabled, would we read them this book? This simplified things – a lot.

It’s enormously clarifying looking at books through this lens. Books that so nearly got it right – we wanted to include them – when we thought about it this way, got a clear no.

Our choices are subjective of course – we don’t claim to speak for all disabled people. And both our disabilities are visible & affect mobility. So that’s our bias.

But we’d really urge everyone to think about kids’ books & disability this way. Judging by the blurbs on Amazon – which often say ‘perfect for the sibling of a disabled child’ – most kids’ books about disability aren’t written for disabled readers.

And if they’re not good enough a reflection of the disabled experience to read to disabled children… In the end, do we really want our non-disabled kids reading them?

We tried to stick as closely to picturebooks as possible – we’ve included a couple which aren’t strictly picturebooks, but no novels.

We also prioritised own voices & only considered books which centre disabled characters. Not because disabled secondary or incidental characters aren’t important, but that wasn’t our focus.

If you want to recommend a book in the comments (more relevant on instagram than here really), we should just mention:

a) we’ve read a lot of what’s out there, there may be a reason we’ve not recommended your fave.

b) we work in publishing – with occasional exceptions we don’t want to explain why some books didn’t work for us in a public forum. I know that’s annoying (for us too!) but there are very good intentions behind a lot of these books – the ones we feel don’t quite hit the mark – & their authors & editors are often our colleagues.

These are great books. Enjoy!

Lucy & James Catchpole

This text was also posted on instagram on the 8th August 2020

Just (Don’t) Ask!

Just Ask! But don’t. Please. Speaking as disabled people in children’s publishing – this book means well but is wrong.

Luckily @readwithriver started #LibrarianFightClub on Instagram…

The idea “it’s always best to ask” when it comes to disability is not new – its the norm. We hear it a lot.

Even as an adult, it’s always disarming when a stranger approaches to ask about your disability. Because generally, we don’t ask strangers about their bodies, their medical history. We consider that private. Something you might discuss with friends. Unless you’re disabled…

Disabled children have to work out, on top of everything else, how to answer these questions. Do they break off from playing with friends to say “bone cancer” or “I didn’t get enough oxygen at birth”?

Do they ignore, say “I don’t want to talk about that” or “I’m just disabled”? It’s a delicate thing to work out – with parents & trusted adults.

But this book sweeps all that away – no, the world can & should “just ask”. And so it’s your job to “just answer”. However private or traumatic it feels.

A close up of Just Ask! by Sonia Sotomayor, illustrated by Rafael Lopez. The strapline is "be different, be brave, be you". We've put # LibrarianFightClub over the top.

To be fair, a few lines in the book hint at this: “sometimes my friends don’t feel ready to explain”. But there’s still an obligation: “speaking up keeps me healthy”.

At the core of this book is the (beloved, I know) author’s personal experience with Type 1 diabetes. It’s important to acknowledge that.

And openness about things that make us uncomfortable feels right. But whose discomfort? Do we really feel assuaging it is the duty of disabled children?

Disabled child characters have been used for teachable moments since Tiny Tim. It’s time we moved on. We know there’s very little out there in kidlit when it comes to disability, but bad representation is not better than none.

Full disclosure: James has written a picture book himself on the same subject, with a very different message – it’s called What Happened To You? (2021). It revolves around questions too, but from a disabled child’s perspective. We need to centre disabled children in stories.

And, for that matter, disabled readers. We don’t feel the experience of disabled children has really been centred. To whom is Just Ask! addressed?

Lucy & James Catchpole

This text was also posted on Instagram on the 12th of July 2020.

Happy Death Day! Or Happy Birthday…

After someone dies, their birthday suddenly doesn’t need marking anymore. But the 15th of June will always feel enormously significant to me – it was my mother’s birthday, an important date for 24 years of my life. It’s hardwired in me, this date, far more than the date of her tragic, unexpected death.

This photo was taken at my christening. She was only 25 or so – the age I was when she died. She died a few weeks before her 50th birthday. It was 2004, before camera phones, and before everyone had digital cameras. So it’ll seem to my girls like their Grandma lived in a completely different era.

Actually, I too grew up with that idea – as a direct result of this photo – I thought I’d somehow been born in the Edwardian era, and things had just changed very quickly. (It was 1979, Edwardian chic was in style.)

I always mean to mark her birthday. I often fail. It’s still surprisingly raw after all these years. My life is segmented into the before and after. Her death contributed to a chain of events that made my condition dramatically worsen, I lost the ability to walk etc.

But she of course knew nothing of that. It’s easy for the person you loved to get lost in the circumstances around their death.

She was a very warm woman, whose eyes smiled like nobody else’s I’ve ever seen. She was fiercely intelligent and loving, with a personality that could swing somewhat alarmingly. She never, through the sparse nineties & noughties, plucked her eyebrows – they’d be achingly fashionable now. I regret she was robbed of that “I told you so”. Our relationship was often hard, and complex, but I loved her terribly. I still do.

We had macaroons and tea in the garden on the anniversary of her death. Mainie ran in saying “happy death day!” in the morning. (She was wearing just pants and brandishing a stick. It was unnerving to be honest.) There was a card too, she drew me and my family in black, and children throwing rose petals onto Grandma’s coffin. (This did happen – she asked me about it and was clearly fascinated.) I posted about it on instagram stories and everyone was so lovely. Next year I will mark her birthday instead, as I always mean to. She deserves a place here I think.

Lucy Catchpole

(First posted on instagram 15.6.20 in a slightly shorter form.)

My disabled motherhood & Alison Lapper – Make Motherhood Diverse

Back in September 2019 I wrote this short piece about Alison Lapper for the Instagram account @makemotherhooddiverse.

In terms of media representation, disabled mothers are thin on the ground. So Alison Lapper, naked, pregnant, very definitely disabled, and on the fourth plinth in Trafalgar Square was a beacon for me in the Noughties. I’ve just heard that Alison Lapper’s son Parys has died, aged 19, and feel knocked sideways with the sadness of it.

Very few disabled mothers are heard, and she’s a glorious exception. As a young, newly disabled woman, watching her pregnancy and motherhood in the BBC documentary Child of Our Time gave me hope that motherhood might be possible for me. I pored over her book, and the few times I saw her on tv talking about parenting as a disabled person affected me profoundly. She was so confident in her mothering.

Alison Lapper and her son.

My sadness about this is selfish, I don’t know Alison or her son. Like most people when it comes to disability, I wanted to see a happy ending so badly. I wanted her strength to be enough.

Because if her strength wasn’t enough, then what does that say? It says that perhaps it just isn’t possible. That perhaps without extra resources, privilege, support structures, it is not possible to be severely disabled and bring up a child as a single mother.

Alison has said in interviews that Parys was bullied at secondary school, that the bullies focused on her disability. That he asked her to stop coming to Parents’ Evenings at school. For me this is the fear, that the uncomplicated love our children feel for us will give way to something else when they grow up and see us through the eyes of others. That they will feel shame. As disabled mothers there’s very little we can do about that – this one is on all the able-bodied people around us, and that is scary.

Me and my daughter Viola, August 2019

Lucy Catchpole

In a Lockdown, Getting Bored Now… Mainie sings! Quarantine song 8

We’re still going! Virtual playgroup is still live on Instagram every Thursday at 4pm. (I just got lazy about putting them here too.) This was week 8 and Mainie wanted to sing. It’s almost as though she’s actually bored… πŸ˜‰

We All Live In An Endless Quarantine – quarantine song 5

In which it rains, James rhymes pangolin with quarantine, Viola learns to “sing”, and Mainie is creatively exhausted after her seminal performance of Dingle Dangle scarecrow at virtual playgroup, and wields an umbrella.

5 weeks of quarantine…

(Virtual playgroup on instagram live, Thursdays at 4pm – @thecatchpoles)

Trapped – With and Without Covid-19

I do not want to write this post – there is literally nothing I want to write about less. This is not about the coronavirus, which is pretty much all that feels relevant right now.

A lot of us are isolated, and feel trapped. Because the whole country, and much of the world is under lockdown. But on top of that, I’ve been trapped in my area of Oxford for months now, and am likely to remain so after the lockdown finishes. Getting out to the rest of this beautiful city is now much harder and more painful than it was before. They’ve shut the main road to cars at one end, and the impact on my life has been massive.

I understand the appeal of pedestrianising cities and discouraging cars, and the reasons behind it, I was able-bodied once. People probably imagine that there is some sort of provision made for disabled people, for wheelchair users like me who have to travel by car. There is not.

I wrote this initially as an instagram post and it sat in my drafts ever since. I looked back at the photos I’ve posted on there, of the painfully precious trips out with my children – so many of those places I won’t realistically be able to go now. In a life that was already so restricted it is crushing.

It is very difficult to talk about this. When I first became disabled aged 19 in 1998 it wasn’t too bad – as a disabled driver I could get to most of the city. Since then more and more of Oxford has been made off-limits to cars. And so, to me. Trying to explain to able-bodied people can be frustrating and upsetting. Honestly, I’ve stopped trying on the whole. There’s a reluctance to believe it’s true. They want details, make suggestions, refuse to believe there aren’t solutions.

So I’m not going to give details, and I’m afraid I don’t want suggestions. There are many admirable disabled people out there who patiently and doggedly document the access problems they face, put in official complaints, and fight. I can’t tell you how much I admire them. The truth is I can’t think of anything that’d make me more miserable. As a disabled person you’re constantly entreated to “look for the positive”. (Which is a thoroughly patronising thing to say btw. Don’t.) I enjoy my life enormously, despite its restrictions – my home, my young daughters and my husband. I’d just like to leave it occasionally. Documenting every access problem – every time you can’t do something – is the exact opposite of that.

So I wonder how many, like me, are largely invisible. Who find another precious trip they used to make is no longer possible and don’t have it in them to fight. Because it is too much, too painful, to beg and be dismissed. The city council, or whoever makes these decisions, will never know about us.

There’s a familiar gesture and tone that people use when this subject is broached – surprise, confusion, and dismissal with one sentence and a wave of the hand. Oh but you’re not the target, and I expected you to be with us, their tone says. Yes the target is overarching and something that threatens everyone – climate change. And this is one reason this is so uncomfortable for me, it’s got nasty locally around this issue – people against the closure are being written off as trolls. No, disabled people are not the target, but it hits us nonetheless. We’re the collateral damage for a greater cause, and we’re meant to accept that with good grace.

These anti-car measures are meant to be time-consuming, awkward, difficult – that is literally the point, to either ban or discourage car use. But if it’s awkward for you – eg slowing down and bumping over traffic calming measures – it is agonisingly physically painful for me. If it adds half an hour onto your journey it does the same to mine, and in doing so moves it from a do-able trip with planning and rest to essentially impossible. Many, many other disabled people are in a similar position. Disabled people with stamina and no pain do exist – I married one – but are in the minority.

If you were to ask local politicians they’d probably claim there will be some system in place for us. But this has already happened – the road is already closed and has been for months (initially for roadworks – then somebody had the bright idea of keeping it that way). There is nothing. They might point to an ill-thought through scheme like mobility scooters to rent, the sort of scheme which is relevant to almost no real-life disabled person for so many reasons. Or a phone number you can apparently call for permission to drive to a local playground (rising bollard issues). These things are diversions to help able-bodied people feel better about the situation. Including the people who make these decisions, who I’m sure are thoroughly good, well-meaning people. We are just not on their radar, and if we are, the real life implications of disability are poorly understood. (Or we’re just a sacrifice for the greater good.)

I remember when I first became disabled, and rang the number I’d seen proudly displayed on all the train timetables for years, right next to the wheelchair symbol. Here, I had no doubt, would be the answers – a specialist disability access helpline, I imagined naively. It led to the main desk. And believe me, they were not interested. I was appalled but also frankly begrudgingly impressed. It’s like the huge banners all over supermarket websites right now, proclaiming that given Covid-19 they’re keeping their slots for the most vulnerable. They aren’t there for us – those signs. Try to actually access some of this supposed help and you find that out quickly. They’re there for you. To make all the able-bodied people feel better. And from what I remember pre-1998, it works.

If you’re reading this as an able-bodied person it might be impossible to understand. But this is how it is. Every bit of my emotional and physical energy could be eaten up with fighting the myriad barriers. I can’t live that. I can’t face how insignificant I am to this city I love, how easily I’m excluded. It’s too painful.

My 5 year old asked the other day “but why does nobody care about disabled people?” Quite. What do I say?

Lucy Catchpole, April 2020

The Sun Has Got His Hat On And We’re Staying In To Play

A song from our 4th virtual playgroup

In which Viola takes our hat-wearing as a personal challenge to remove as many hats as possible in the shortest conceivable period of time. She is successful. By the time we got to this take Mainie had given up and was channelling American Gothic at the back. If you watch to the outtakes you’ll see she was initially significantly more enthusiastic.

We’ve been totally locked down as a household for a month now.

Virtual playgroup on instagram live, 4pm on Thursdays. Find us @thecatchpoles.