How to talk to your child about disability?

How to talk to your child about disability? We’re asked this pretty frequently, so thought we’d post this extract from an Q&A James did recently, about this & his upcoming book – What Happened to You?

Q. Children sometimes ask questions that could upset a child with a disability. Do you have any advice for parents of disabled children about how they can comfort their children & empower them in the case of an upsetting or uninvited question? 

A. The first thing I’d say is that, uninhibited as children are, there are actually plenty of adults who are perfectly prepared to ask WHAT HAPPENED TO YOU? at the bus stop, or in the post office queue. For some disabled people, it’s a daily gauntlet whenever they leave the house. Disabled children will end up developing strategies to cope with this, which they will keep on using into adulthood, & there’s no simple answer, no one perfect response. Kids have to work out what they feel comfortable saying. But parents can empower them by making it clear they’re not obliged to explain themselves. Disabled children need to know they should have the same expectations of privacy as any child, & that it’s the question that is impolite, not any reluctance they might feel to answer it. 

Out now with Faber – link to order below!

Q. And how can parents of non-disabled children discuss this with their children to encourage them to put their disabled friend’s feelings above their curiosity? 

A. Parents sometimes ask me this in the playground, usually soon after their child has yelled YOU’VE ONLY GOT ONE LEG at the top of their voice!

I think the only solution is empathy. Well, maybe a quick lesson in manners first: now, we don’t shout at/harass/harangue/pursue/interrogate/grope (yes, seriously!) people we don’t know, do we?

But then the way to make it stick is to say: imagine you had one leg or used a wheelchair. Wouldn’t you get bored of being treated that way? I was actually a teenager before I realised that my best friend of years and years, unlike countless other children and adults I’d met in passing, had never once asked me…

James Catchpole

From a longer Q&A with Children’s Salon, and posted on Instagram on the 26th of February 2021

What Happened To You is out now (Faber) – you can order it here https://uk.bookshop.org/a/3366/9780571358304

The cover of James's book - a children's picture book showing a rather gorgeous one-legged boy winking at the viewer. He's a white child with blondish hair and is not wearing a prosthetic leg. The title is What Happened To You? It's written by James Catchpole and illustrated by Karen George.
Out now with Faber. By me!

[Image descriptions:

Image 1: A family photo from 2019 – we’re all out near our home in Oxford. Baby Viola is asleep in Lucy’s lap, and Lucy is sitting in her wheelchair. Mainie (age 5) is standing to the side, gesticulating (shrugging?) and smiling at the camera. I’ve just realised you can’t actually see that James has one leg.  (You think an entire missing limb would show up more frequently on photos to be quite honest.) Viola and Mainie are wearing matching bonnets – which are a triumph IMO. We’re all white with varying shades of brown hair.

Image 2: The cover of James’s book – a children’s picture book showing a rather gorgeous one-legged boy winking at the viewer. He’s a white child with blondish hair and is not wearing a prosthetic leg. The title is What Happened To You? It’s written by James Catchpole and illustrated by Karen George.]

Where is all the dad guilt?

Ever heard of “dad guilt”? I haven’t. But “mum guilt” is everywhere. 

What would the world make of James if he felt guilt for being a one legged father? (Disclaimer: obviously he doesn’t. He’s a man, after all…)

It’d clearly be a ridiculous thing to feel guilty about – there is no alternative world in which our children were born to a two-legged father. They exist because of this, one-legged, father.

James is generally treated like some kind of superman for parenting his own children. (And being married to his disabled wife.) It’s a bit odd. But also the opposite of any expectation he feel guilt as a parent.

Before I became a parent I thought a lot about the whole “mum guilt” thing, and decided that I wouldn’t treat it as a legitimate feeling. Because I don’t think it is. 

It seems to me to be mostly be about things we have absolutely no control over and no reason to feel responsible for: pandemics. C sections.

I decided I wouldn’t express it in front of my children.

I grew up with the ideal of an all-giving, selfless mother. I think it ran deep for her. And it was confusing – it gave me expectations my mother could never fulfil. Because of course she was human, with human limitations.

Children are sponges, they absorb what they see in simple terms. If I expressed guilt for not being able to walk, wouldn’t my kids reasonably presume it IS my fault, and within my power?

Society often treats disabled people for our disabilities. Disability still carries shame. And we frequently become scapegoats within our own families.

Children pick up on all that. Even the children of disabled people. They’re not angels – they’re kids, hungry for information.

If I accepted “mum guilt” where would it end? I’m mostly housebound, live in bed, constant pain – there are millions of things my children can’t do because of my disability.

But. But! It isn’t my fault. Wouldn’t I confuse my children if I behaved as though it were?

There is no world in which my children were born to an able-bodied mother. Just me, as I am. Of course they feel sad about the things they can’t do with me – so do I. But if I blame myself they will too, which will get us nowhere good.

Which is surely the last thing any of us needs.

I am absolutely not rubbishing the feeling, but the way guilt is seen as an expected, legitimate part of motherhood. And the glaring inequality of it all.

Lucy Catchpole

First posted on Instagram on the 8th of September 2020

James is standing with newborn Viola strapped to his chest, 4 year old Mainie is looking up at him adoringly.
James: a conspicuous absence of “dad guilt”

[Image description 1: Lucy sits in her wheelchair with Mainie on her lap and Viola attempting to climb the other side of her, they’re outside and are very windswept. She is wearing a very fine honey coloured linen skirt, which billows a bit. Hair is everywhere. We’re all white with brown hair. Lucy’s is ridiculously long.

Image 2: James – a one legged man with crutches – is standing with newborn Viola strapped to his chest, 4 year old Mainie is looking up at him adoringly.]

KidLitCripCrit – El Deafo

El Deafo is a very funny, real, own voices autobiographical graphic novel about a deaf rabbit.

If Mama Zooms is personal for us, this is out of our comfort zone – neither of us is deaf. Or a rabbit. (Though the characters are really humans with rabbit ears.)

So does this qualify as an own voices review? Well no. Though maybe being disabled gives me an edge. I’ve read all the reviews by deaf, hard of hearing & culturally Deaf people I could find – do seek them out.

While I don’t believe Cece Bell identifies as disabled, in my opinion this is own voices at its finest. An intensely personal story – Cece becomes deaf, goes to school, friendships are made & break down. It is one 1970s, messy & individual experience of deafness. (With a small ‘d’ – a note at the end explains she is not part of Deaf culture or community)

Personal stories can have such power – especially when it comes to disability.

Inside pages - Cece sits with 2 friends. One shouts 'CEE-CEE IS MY DEAF FRIEND. SHE IS A-CT-UALLY ONE OF MY BEST-EST FRIENDS'
“Cece is my deaf friend. She is actually one of my bestest friends.” Words every deaf child longs to hear shouted, I’m sure…

There is no effort to make it palatable or easy for hearing readers. We see the many ways Cece’s fellow pupils get it wrong & wince – the shouting (which does not help), the patronising comments… and we learn as a by-product. The best way, surely.

Cece holds up signs with simple messages on, two read 'shouting is NOT good', & 'hands in front of mouth are also bad news'. The hearing characters speak back in nonsense, eg 'foo gah bee ahfah'.
Shouting: not helpful.

For someone like me – never a disabled child, no experience of non-mainstream education – Cece’s experience of classes with other deaf children is eye-opening. What we might naively imagine to be a negative experience – segregation – instead seems enormously validating. When she’s moved into mainstream education: 

‘I will never again be surrounded by kids like me.’

It seems a terrible loss.

Another close up of inside pages - Cece, a child-rabbit, stands in a classroom with other child-rabbit friends with hearing aids. Writing at the top reads: 'When I say good-bye to my friends at Fisher school, I do not realise that I will never again be surrounded by kids who are just like me.'
“I do not realise I will never again be surrounded by kids who are just like me”

The danger of a single story is definitely a thing. #CeceBell makes clear in a note at the end that this is her deaf experience – not the D/deaf experience.

Stories of disability are still so few they’re always in danger of being universalised. The 70s tech shown is outdated & no longer in use – probably obvious to an adult, worth spelling out to children. And her ambivalence about sign language should be understood as an individual reaction to circumstances, not a norm.

I know the title El Deafo puts some off (me included tbh) but I’d really urge you to read it. Mainie, 5, loves it, but it’s really suited to older kids & adults.

Lucy Catchpole

(First posted on Instagram on the 31st August 2020)

If you’d like to, you can order El Deafo here through our Bookshop affilate link: https://uk.bookshop.org/a/3366/9781419712173

[Image descriptions:

Image 1: Mainie (a 5yo white girl) is wearing a red cape & rabbit ears & holding a copy of El Deafo. She’s looking off to the side and is standing in a superhero pose. Text reads: weekly reviews by actual disabled people (not her – she is not disabled. And is 5.)

Image 2: Inside pages – Cece sits with 2 friends. One shouts ‘CEE-CEE IS MY DEAF FRIEND. SHE IS A-CT-UALLY ONE OF MY BEST-EST FRIENDS’

Image 3: Cece holds up signs with simple messages on, two read ‘shouting is NOT good’, & ‘hands in front of mouth are also bad news’. The hearing characters speak back in nonsense, eg ‘foo gah bee ahfah’.

Image 4: Another close up of inside pages – Cece, a child-rabbit, stands in a classroom with other child-rabbit friends with hearing aids. Writing at the top reads: ‘When I say good-bye to my friends at Fisher school, I do not realise that I will never again be surrounded by kids who are just like me.’]

An entirely unnecessary image

What Happened To You? is finally out!

It’s the 6th of April, and What Happened To You? is out in the U.S today.

James did BBC Breakfast on Saturday, which is pretty unusual for any children’s book, especially a picture book. Not sure how well YouTube works on here really, but I’ll put it here anyway. (Pulling the recording was a total faff so I am going to scatter it as many places as I can.)

The paperback sold out on Amazon minutes after James came off air. There’s been so much support for this book, especially on Instagram, that very unusually there’ve been three UK print runs pre-publication. And two in the US. (We’re just waiting for them work their way through the system…)

And talking of videos, last year – at the beginning of the pandemic – I made this video about the book for Faber. Just going to leave that here, too.

Lucy Catchpole

Affiliate link, with free international delivery from our local bookshop here What Happened to You? : James Catchpole, : 9780571358304 : Blackwell’s?a_aid=TheCatchpoles

KidLitCripCrit – Mama Zooms

Mama Zooms is that rare thing – a book that becomes part of your everyday. Viola calls it the ‘wheee!’ book & since the day it arrived she’s been over the moon about it.

It’s a beautifully simple, joyful book. A child sits on their mother’s knee: 

‘Mama’s got a zooming machine… and she zooms me everywhere.’ 

– every page is a different mini adventure. A celebration of a mother-child relationship, through the intimacy of riding on her lap.

This is one of the loveliest aspects for me of being a wheelchair using parent, and Mama Zooms nailed it. And did so almost 30 years ago – it was published in 1993, the oldest on our list by a mile.

It’s such an obvious idea. Wheeled vehicles fascinate children, so of course they’re everywhere. With one notable exception.

Wheelchairs are still feared, still stigmatised. Still associated with laziness & ‘giving up’ (whatever that actually means). And when children are shown wheelchair users, they tend to be children or older people.

So this extremely wholesome book feels a bit radical too, in the way it revels in & celebrates the wheelchair.

Mama Zooms isn’t own voices. But unlike so many others, it shows total respect for the disabled character.

The wheelchair isn’t used as a punchline – no big reveal, no ‘ta daa! She’s in a wheelchair!’ We can’t fully see the chair in the first spreads, but it isn’t dodged.

I’m not a ‘fit’ wheelchair user like the character in this book. I can’t take my kids out alone, whizz them down ramps, to the beach etc. The mother in this book is the most socially acceptable wheelchair user – strong, white, normatively attractive, a manual chair etc.

It’s not all me. But I still feel represented by it. And so do both our daughters.

The word ‘wheee’ appears nowhere, but at 1yo it’s what Viola sees – the movement, the excitement. She sees herself & me in it & our far more modest trips to the garden. She points to the child & says ‘Vava’. And now says ‘wheee!’ as she settles onto my lap.

The last page is pretty special:

‘Mama zooms me right up until bedtime. Then Mama is just my mama, and that’s how I like her best.’

Lucy Catchpole

(First posted on Instagram on the 23rd of August 2020.)

Mama Zooms is available with free international delivery at our local bookshop, Blackwell’s (affiliate link). It’s quite ridiculously cheap right now – £2.77 including postage – but I don’t know how long that’ll last. Mama Zooms : Jane Cowen-Fletcher (author) : 9780590457750 : Blackwell’s

Frustratingly Bookshop do not stock it, but here’s the rest of our list on our affiliate link Bookshop

KidLitCripCrit – A Kids Book About Disabilities

Here’s our first review of our top 6 kids’ books featuring disability – KidLitCripCrit as we’re calling it. (Unpronounceable, but we couldn’t resist.) This one is own voices – the author is a wheelchair user. As am I.

Do see our full list too, if you haven’t already.

Imagine the best primary school teacher you can, also a wheelchair user, giving your kids a perfectly pitched TED talk about disability – A Kids Book About Disabilities is that, in book form.

To be honest, we were dubious. A picture book format with no pictures? On disability?

But this book WORKS.

Kristine Napper’s writing is witty, never patronising, and utterly on point.

Something we get rather tired of when it comes to disability is the “everybody’s special!” thing. Here, the message instead is “disability is normal”.

Interestingly, instead of saying “don’t ask questions”, she points out that some questions aren’t nice, eg “what happened to you?” or “tell me how you use the bathroom?”.

We read it with Mainie, who as the proud owner of 2 disabled parents is pretty sure she knows everything a non-disabled person can about disability. She’s also 5 and likes pictures – a lot.

But she was hooked to the end, and said we should really just give this book to all the people who ask Daddy questions. (A pretty good plan, but might get expensive.)

The design is fantastic. We work in children’s publishing and it’s very hard to imagine this book coming out of the mainstream. The typography does all the work that illustrations usually would. In fact the message and typography on some pages are so effective they could easily be posters.

We’d be sceptical if we hadn’t read the book, but especially as a book to read with your child – which is the intention – it really, really works. We’re planning to get a copy for Mainie’s school.

It came out in summer 2020, it’s a US publication & was not super easy to find – we got our copy from Bon Tot but since then it seems to have vanished – which is a great shame. Good books centring disability are so very rare already, it makes me quite despondent when one actually appears and then isn’t widely available.

Lucy and James Catchpole

(Originally posted on Instagram on August the 16th 2020.)

A Kids Book About Disabilities is available here, though whether they ship internationally I’m not sure – A Kids Book About Disabilities – A Kids Book About™

Most other books on our KidLitCripCrit list are available on this – affiliate – link Bookshop

[Image descriptions:

Image 1: The book is propped next to James’s prosthetic leg. Text reads: our top 6, own voices review – own voices book, & book title & author (as in post).

Image 2: A double page spread of the book lying open. The words read: ‘But some questions aren’t nice. Some are kinda mean. Questions like….. “What’s wrong with you?” “Tell me how you use the bathroom?” “What happened to you?” “Can you have babies?”

Image 3: Mainie, a 5 year old white girl, is standing in the countryside holding a blue book with a dramatic white typeface – A Kids Book About Disabilities. She’s holding James’s black crutches and looks very pleased with herself. Text reads – disability in kidlit, own voices reviews, #KidLitCripCrit, @thecatchpoles.

Image 4: Viola sits grumpily in James’s prosthetic leg. The book is propped next to her. Text reads: ‘A very good book indeed. Bit sophisticated for a one year old’]

Asking questions is not the opposite of staring at a disabled person

Asking questions is not the opposite of staring at a disabled person. Is it? I mean it doesn’t make much sense – but it’s often how the dialogue around this goes.

Eg “I’d rather they asked questions than stared”

But why on earth would we be choosing between one and the other?

There’s a particular sort of stare we disabled people sometimes get. It’s absolutely othering. Perhaps it feels like if the starer would vocalise their thoughts it’d close the gap, bring it out into the open – create a connection?

But in reality, both staring at & asking questions of a stranger are othering.

Staring is not the opposite of questions – they’re coming from a similar place. Both are objectifying.

Being stared at as a disabled person can feel like you’re a museum or zoo exhibit, & don’t museums often give details of their exhibits? Encourage questions?

Society has often been fascinated by the details of lives absolutely categorised as other. (I mean, see freak shows.) 

Questions are not necessarily about acknowledging humanity – they can be about the opposite. 

Disabled people used to be kept in institutions. The so called Ugly Laws in the US made it clear this was to save the non-disabled the hardship of having to look at us.

When THAT’S the background, approaching a disabled stranger to ask them questions must have seemed uber enlightened, inclusive. Talking to us at all was legitimising. Acknowledging our existence.

Lots of disabled people find encouraging openness the best way to navigate an often impossibly hostile world – this is not about that. But non-disabled people – pleease stop encouraging questions. It’s not a progressive move towards diversity & acceptance. It’s the status quo.

When James started his book it felt like swimming against the tide to be taking on ‘just ask’ as an ideal – I was worried about how it’d be received.

It takes time to dismantle these things.

But our privacy has to trump others’ curiosity, & I think this is finally breaking into the mainstream.

Lucy Catchpole 

(Posted on Instagram on the 11th of February 2021) 

[Image description: A photo from the summer. James – a one-legged father – is sitting on the floor outside, looking at the camera. Mainie (age 6) is standing next to him in a floral skirt, she’s pointing at him with a solemn, slightly quizzical look on her face. Behind them you can just see 1 year old Viola, who is sitting inside James’s prosthetic leg. It is not a boat. But she is trying to row it nonetheless. Text with a cream background reads: Asking questions is NOT the opposite of staring at a disabled person.] 

If you enjoyed this, this picture book by James may be up your street.

You can buy What Happened To You? through our affilate link here: https://uk.bookshop.org/a/3366/9780571358304

Disabled! The best word we have

Disabled! Not a perfect word, but the best we have. There’s a dance around the language we use when it comes to disability, an uncomfortable one, and still so much confusion. 

I remember ‘handicapped’ in the 80s. Cripple mostly went out with the institutions they used to lock us up in. Invalid is awful, but less taboo (my rust-bucket of a wheelchair has a pun on invalid printed on the back – a major brand name apparently.) 

Disabled – the agreed-upon compromise. 

Of course the etymology of most of these words is cringe-making.

♿ In-valid – literally not valid (person? ticket? passport?)

♿ Disabled – no longer functioning (person? vehicle? instagram account?) 

In theory, ‘handicapped’ should be better – a sports handicap is a far more accurate analogy than a broken down lorry. 

But I loathe it. Words move on swiftly from their roots to absorb the ways they are used & the attitudes of the time. And handicapped just has too much baggage for me. 

I do care about language. If you call me any of the above except disabled I will flinch. 

But the more recent able-bodied pre-occupation with ‘kinder’ language can end up reaffirming the prejudice it’s trying to avoid : misleading euphemisms like ‘differently abled’, ‘special needs’… 

And the trend for ‘person first’ language, which still seems all the rage in the US – a charming reminder that unless you include the word PERSON when you talk about me, you’ll forget I actually am one.

It’s a weird, futile dance to watch. Disability is stigmatised. Helpful non-disabled people change the language – to ‘handicapped’ or ‘special needs’. And in a few years that new language is so contaminated by its association with us we’re back where we started. 

‘Special’ was an insult at school in the 90s. A decade earlier it was ‘Joey’. Why? Because a disabled man was once interviewed on BBC stalwart Blue Peter, and his name was Joey.

That is all it took for Joey – a man’s name for god’s sake – to become a playground insult. 

So. The problem is not the language. The problem is the stigma surrounding disability (yes, I’m sticking with that word). If we sound weary when yet another language change is suggested, this may be why.

Lucy Catchpole 

P.S PLEASE can we stop with the puns? Seriously. If I never hear wordplay around ‘ability’ again I shall die happy.

First posted on Instagram on the 4th of October 2020

[Image description: Lucy is in the garden with Viola (1) on her lap, they’re wearing dark brown & mustard. You can just about see her ancient metallic blue wheelchair. Lucy does not like metallic blue. The text reads – ‘Disabled! The best word we have’]

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