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Katy: I’ve broken my back in an accident and now I’m going to be paralysed from the waist down for the rest of my life! It makes it a lot harder to play basketball because being in a wheelchair means I’ve gone from being the tallest kid in the class to the shortest, but I was learning to be quite good at it anyway, but now my school won’t even let me play basketball any more because I was so dangerous zooming around in my wheelchair that the other players were afraid to tackle me! And I can’t even get to some of my classes because they’re upstairs and the school doesn’t have lifts.
I hate this. My stepmum is trying to be nice by inviting me to do things with her like design handbags, but it makes me feel like a pathetic cripple in a Victorian novel, and I hate her for making me feel like that. If I really was in a Victorian novel, probably I’d miraculously get better, and that would be just the first of my adventures and then there’d be all these sequels where I go away to boarding school and grow up and fall in love and get married and have children.
But in real life, maybe I’ll never do any of those things. Well, okay, it’s not that I can’t do anything – one of my dad’s friends has had rheumatic arthritis since she was my age, and she’s a professor, like Stephen Hawking. But I can’t go climbing or skating or sneak into the next-door-neighbour’s garden ever again, and when I get to be a teenager I’ll probably never find a boyfriend, unless it’s someone who just feels sorry for me, or a creep who thinks crippled girls are sexy because they can’t get away. mean, I’m fed up. Does life ever get better?
Daisy: Hi, Katie. My big sister, Lily, can’t walk either, but she’s not like you. She has a broken brain instead of a broken back, so she can’t go to a normal school at all.
We used to think Lily was never going to be able to talk or do anything, and that it was always going to be like having a giant baby in the house. It felt as if the only good thing about having a sister like Lily was that Chloe, this mean girl from my school who bullied me and stole all my friends, was frightened of her.
But now Lily’s learning Makaton, which is a sort of simple form of sign language, at her school, so we can talk to each other, and she’s a real big sister. When I was sad because Chloe was having a sleepover party and inviting everyone except me, Lily comforted me by letting me sleep in her bed, and she said we should have our own sleepover party. So we did that, with my one friend and Lily’s best friend from her school, and it was the best party ever! We went swimming in the therapy pool and then my uncle taught us to dance and gave us makeovers, and we all slept in Lily’s room, and we had way more fun than everyone else did at Chloe’s posh expensive party with a Youtube star coming to entertain them. And Lily’s friend from school is a Goth and is super-cool.
I know Lily can’t be normal. She’s never going to be able to walk, and she’ll probably never do GCSEs or go to university or get a job. But she’s a person and she has her own life, so I think life is getting better from her. It’s definitely getting better for me, having a proper sister I can talk and laugh with.
Dolphin: Sometimes people’s lives get better, even if they can’t fully recover from an illness or a disability, and sometimes they don’t. My mum has bi-polar, and my sister and I had to be taken into care because my mum was too ill to look after us.
Sometimes people assume that if you grow up in care, you’ve got no chance of doing anything good with your life, or that if one of your parents has an illness, you’ll probably inherit it and go the same way they did. But Star and I are doing okay as adults. My sister Star is a doctor now, and she’s married and has a child, and she’s a good mum. I’m running my own tattoo parlour, because even though I know it’s not healthy the way my mum always gets a new tattoo whenever she’s in the manic phase of her cycle, I also know some tattoos can look cool.
My mum is – still the same. Still flaky, still running into bad relationships with bad boyfriends who encourage her to stop taking her medication, and to get drunk and use drugs. I’m always having to drop everything and go and bail her out because she’s having a psychotic episode and kicking off and I’m her emergency contact even though Star is the one with medical qualifications, because Star is fed up with her. But she’s my mum and I love her, and, well, life goes on.
Garnet: Sometimes it’s disappointing when things don’t go the way you hoped, but that doesn’t mean there can’t be a good side to it. My sister and I were desperate to get into drama school together when we were about your age. Well, mainly it was Ruby who was desperate, because she’d always wanted to be an actress, but we always did everything together, so we both applied.
But then I got in and Ruby didn’t, and she hated it. We thought we could never really be best friends again, not the way we always used to be. I liked going to my new school, and it was a lot easier to be me, and express my own ideas and not just be Ruby’s quiet sister, when I didn’t have her talking over me. But I missed Ruby, and I felt guilty about stealing her dream.
But now, as adults, we’re still close, and working together, and Ruby was the one who became an actress after all, even though she wasn’t the one who went to drama school. I write a television show, and Ruby stars in it. She’s very creative and funny and extremely popular. She says she had to learn to work hard when she didn’t have me around to do her homework for her.
Not long ago, we had a girl on our show who had been as ultra-close to her sisters, in a rather unhealthy, we-are-all-best-friends-and-don’t-need-any-other-friends way, as I had been to Ruby when we were younger, with her sisters doing her schoolwork for her the way I used to do for Ruby. It was only when she was seven, and her teacher split them all up so that the three of them were sitting separately, that they started to make other friends.
Tina was on the show with her new friend Selma to talk about how they had created a butterfly garden together at their school, which she’d never have thought of doing if her life hadn’t changed, and she and Selma hadn’t found themselves the only two children in their class with no friends or hobbies to go out to at playtime.
Tina was very small for her age, and I learned from her parents that she had been born with serious medical problems, which was why she was so much smaller than her sisters that most people assumed she was younger instead of being one of triplets. Until she had started working on the butterfly garden, she had barely done any kind of physical exercise, since she was too fragile to be able to play contact sports like you (I hope you do go back to playing basketball, but please try not to maim anyone else in the process!), so had had a poor appetite, therefore hadn’t grown fast. But by the time I met her, she was a cheerful, active and rosy-cheeked, if short, seven-year-old. Her fragility might never entirely go away, and she might miss more school from illness than her sisters (she said she had started to get interested in butterflies because of reading a book about them while convalescing from illness), but this didn’t mean that she couldn’t make progress.
I know having a life-changing injury is a much bigger change than sitting at a different desk from your sister, or even going to a different school, and I don’t want to trivialise it. I’m just saying that your life isn’t over, and you don’t know what might come up.
Tracy: I grew up in a care home, like Dolphin, so I know what she means about people thinking you’ll never get anywhere, and maybe a lot of people think that about disabled people, too. But it wasn’t Dolphin’s mum’s fault she was ill, but my mum just couldn’t be bothered with me! I got taken into care when I was a toddler because she used to go out and leave me on my own, and I had three foster families but the first two gave up on me, so I didn’t have a proper mum until I met Cam. She’s been my foster mum since I was ten, and she’s my daughter’s favourite granny.
Some of the other kids at the Dumping Ground (the care home I used to live in), and some of the friends I used to hang out with when we were bunking off school after Cam fostered me, have gone on to do really well. Peter, this weedy little boy who used to cling to me and insist I was his ‘best friend’ just because we had the same birthday (well, and because I helped him with the washing-machine when we’d both been woken up in the night by wetting our beds) is a headmaster now, and Sean, who used to be a lonely boy who kept getting excluded from school and spent his life hoping his dad would come and visit him, the same way I always longed for my mum to visit me, went on to be a Premier League footballer and he runs his own gym now, and he’s really rich and lives in this huge expensive house with a private swimming pool.
Justine thinks she’s made it because she’s run her own business, even though she keeps going bankrupt, and she’s still the same back-stabbing friend-stealing little bitch that she was when we were ten! (Cam says I shouldn’t call her a bitch because it’s sexist, and Jess, my daughter, says it’s unfair to dogs. Jess is nuts about dogs. We’ve got a lovely dog called Alfie who we adopted from Battersea Dogs’ Home even though we weren’t really allowed pets in our flat, and Jess’s favourite toys are her cuddly toy dog Woofer and all our china models of mother dogs with puppies.) So I’ll just call Justine a fake friend, instead.
Me, though – I drifted from job to job, got pregnant too early by a boy I didn’t even like (he’s not horrible or anything, but he can’t really be bothered with me, or with Jess), never did A-levels, never stuck with a boyfriend very long. Sean lasted about the longest, because we’d been friends when we were children, but Jess couldn’t settle into living in his big house instead of our little flat, and it didn’t work out, especially when he turned out to be cheating on me.
BUT! I’m not a bad mum. I don’t leave Jess on her own, and even if I’ve had boyfriends who were pretty useless, I never had ones who were a threat to Jess. I didn’t neglect her, and I always stuck up for her if anyone gave her a hard time. And she’s a good kid who behaves much better and gets better grades in school than I ever did, and I’m proud of her. And our life is getting much better since we moved to the seaside and started working in a junk shop. (Jess spotted that it was called The Dumping Ground, and it seemed like an omen, and the lady who owned it was getting too old and doddery to do much, so she was glad to have us to sort it out.)
Cam:Hi, Katy. Tracy forwarded your message to me, so I hope it’s okay if I answer it, too.
I met Tracy when I came to visit the children’s home where she lived because I was writing a newspaper article about the care system. I’d never thought of fostering, but Tracy was already an aspiring writer and we became friends, and even though she’d always insisted that she needed to be sponsored by a rich family who could buy her lots of toys, almost as soon as we’d met she wanted to move in with me.
It wasn’t as easy as that, of course. I had to train as a foster carer, and particularly learn about working with older children who’d been through a lot of trauma and rejection. And it wasn’t easy for Tracy to get used to me when I had to be a responsible foster-carer who had to make sensible decisions about what we could afford to spend, instead of a friend who invited her over for the day and saved up to take her for a day out even if it meant I was skint for the rest of the week.
When Tracy’s own mother, Carly, considered inviting Tracy to live with her, I tried to be supportive, even though I wasn’t convinced she was competent to bring up a child, because I knew Tracy loved her and I hoped they could manage to make a life together. Tracy was quite indignant at this, because at the same time as telling me to my face that as her foster carer I had a duty to support her relationship with her mother, she also wanted me to be selfish and fight to keep her in order to prove how much I loved her. I think she wanted my life to be so lonely that I desperately needed Tracy to make me complete, because she couldn’t believe that I loved her if I didn’t need her in that way.
Well, of course, it wasn’t like that. Nobody as selfish and needy as Tracy wanted me to be could be a foster carer. But I did love Tracy, and we were both relieved when she did decide to return to living with me. I think fostering her was the best decision either of us ever made. I expected it to be a one-off, but I turned out to be quite good at working with children, especially older children who were scarred by having been rejected by other foster carers, and so when Tracy grew up, I moved into a house where we’d have room to have more children living with us. (Tracy herself turned out to be good with children, too; apart from being a good mother to her own daughter, jobs she’s had include working in a children’s home and being a nanny. Her social worker from when she was younger was amazed, considering some of the incidents in Tracy’s past, like the time she’d shut a little boy in a cupboard!)
I do enjoy fostering, but it did make it very different to have a social life of my own. The Christmas before Tracy moved in, I’d been worrying because my mum didn’t want me to come for Christmas dinner if I brought my girlfriend with me, and Tracy was worrying that her mum wouldn’t bother to come to visit her for Christmas or even see her starring in the school play. In the end, Tracy and I ended up having fried egg and chips (which was about all I knew how to cook, and it was cheap) for Christmas dinner in my flat. We had a very happy day together, even if it wasn’t the one either of us had planned, but on Boxing Day my girlfriend phoned up to say she was breaking things off. In those days, adults weren’t even supposed to talk to children about being gay, so I hadn’t rung my girlfriend until after taking Tracy home, and then when I’d tried calling her later on Christmas Day, she was out, so I didn’t even get to speak to her until Boxing Day. I cried for the next week, but I made sure I didn’t show it when I next went to visit Tracy.
When Tracy moved in, I was determined to be the best mum ever, and never neglect her, and not even go out and leave her with a babysitter until I was quite sure that she knew I was coming back. My two best friends, Jane and Liz, worried about me because I spent all my time with Tracy and stopped doing things like coming swimming with them, even if they invited me to bring Tracy along with them. In time, we managed to work out a bit more of a healthy balance, but even so, my social life had to take third place after my children and my writing.
I managed to stay friends with Liz and Jane, who were very loyal through all this. When they got married, as soon as it became legal, they invited me to their wedding, and I wondered whether I would ever find a wife. I hadn’t had time to date anyone for years.
Well, this year, it finally happened! I met Mary through the swimming club, and we started spending more time together and liking each other more and more. Completely by coincidence, she turned out to be my granddaughter Jess’s teacher (and to have crossed swords with Tracy when she stormed into the school to shout at Mary for not protecting Jess from being bullied). Thankfully, Jess had always got on well with Mary (very differently from Tracy’s interactions with most of her teachers!) and was much more comfortable with having her as a stepgranny than Sean as a stepfather. So it’s taken me until fifty to find love, and I hope it doesn’t take you that long – but I promise you, when you find the right person, it will have been worth waiting for them.
What you said about Victorian novels was interesting, and I’ve discussed it with Mary, and with Tracy and Jess, and my writer friends Jenna and Colin. I used to share my favourite books from my childhood with Tracy, and a lot of them were old classics like Black Beauty, Little Women and Jane Eyre – and, of course, she gave a stunning performance as Scrooge in her school’s production of A Christmas Carol. Jess mostly reads modern children’s books, particularly Jenna’s, but she complains that a lot of them are too weepy, and that when she feels sad anyway, reading a sad story about domestic violence or Victorian orphans doesn’t help.
Jenna says that you’re better off not looking for role models in Victorian novels, because the only things disabled characters ever get to do is either miraculously recover or die. Colin says he wouldn’t have got through his childhood without fantastic escapism, but it should be openly escapist, which is why he writes fairy-tales.
Personally, I think Jenna is being a bit unfair. After all, A Christmas Carol doesn’t end with, ‘And Tiny Tim somehow stopped being crippled and became a Premier League footballer,’ but just tells us that he didn’t die, and that Scrooge became a good friend to him and his family. Jenny Wren and Sloppy in Our Mutual Friend not only don’t die or stop being disabled, but are getting on well and probably heading for marriage by the end of the book.
But it’s true that a lot of disabled characters in 19th century fiction either are people who aren’t permanently disabled but just have some sort of illness and can grow stronger and more active, like Tina, or are very sickly and die.
Why is that? Well, for one thing, in the 19th century there wasn’t much medical care, so lots of people did die young. If you were in a Victorian novel, maybe you’d have a temporary injury that you might or might not recover from, instead of one that you knew would keep you in a wheelchair for the rest of your life. But you might have lots of other sad things happening in your life as well, like maybe your stepmum would die just when you’d finally started to be friends with her. If Tina, the little girl Garnet wrote about, had lived in Victorian times, she might well have died as a baby.
But also, Victorian writers often wrote about people who did have an illness from which they either recovered or died, because they might just not know what sort of story to tell about someone who gets a permanent injury, like you, or is born disabled, like Lily. In Victorian times, you might not have been able to go to school if you weren’t able to walk, and there almost certainly wouldn’t be a school around which was suitable for someone like Lily.
Even in the twentieth century, it was harsher than today. I grew up listening to records of funny, satirical songs and monologues by a singer-songwriter called Michael Flanders. I knew he was disabled, because there was a photograph of him in his wheelchair on the album cover, and he made jokes about things like the car that kept stealing his disabled parking space, or about travelling by air and having to be winched into the aeroplane through the forklift in the kitchen. But I didn’t know until I was older that he had been studying at Oxford before World War Two, but then he got polio during the war, and wasn’t allowed to come back afterwards because the university wasn’t used to dealing with wheelchair users.
I hope that wouldn’t happen now. Gradually, life is getting better for disabled people, just as it is for gay people and often for other minorities. But sometimes it goes backwards, as society becomes less accepting of anyone who doesn’t fit into their pattern of what a ‘normal’ person looks like. Life hasn’t become fair yet, and there is a lot to fight for.
Good luck, Katy. I am fascinated to find out what you choose to do next.