What's it like to grow up with a disabled sibling?
Date Posted: 02.12.2012
Thirteen-year-old Victor remembers playing with his brother, Stanley, when they were tiny. "We used to hide under the covers and Mum used to be the Jack And The Beanstalk giant and come and find us. She used to come and say 'Fee, fi, fo, fum…' Stanley would hide and sort of laugh. That was good. All that stuff. Now we don't really do anything. He doesn't really want to. Sometimes we still do. But he doesn't want to."
Stanley was diagnosed as autistic when he was three and a half. Soon there was no more hiding under the covers. There was no giant. He retreated into his own world. Victor, two years younger, learned to play on his own.
Ten years ago, I wrote a piece for this magazine about the work of Victor and Stanley's mother, Rosie Barnes, a photographer. In a series of images, she had attempted to enter Stanley's enclosed, isolated world, and look out at us from within it. Now Rosie is determined to understand Victor. "I am fed up of people saying, 'Well, it's just like being an only child, isn't it?' No, it couldn't be less like being an only child. Victor is not an only child. He has an older brother, an older brother who should have been guiding him through his life, teaching him things, acting as a social guide. Being the only brother of someone with autism is, I think, a very lonely place to be."
I meet Victor in a cafe where he orders two Oreo milk shakes. He drinks through a straw with his hands in the pockets of his GB Olympic tracksuit, never touching the glass. He's a quiet boy, who hates causing a fuss. But sometimes he feels he has to. "I do stuff to get a reaction. I might take away his DVDs – the ones he likes. I pretend I'm going to throw them away. I sort of open the bin and I'm just about to put them in. Then I just give them back to him. He shouts, 'No! Don't do that!' I think I'm a bit frustrated that he doesn't do things with me. So that's why I wind him up." Victor also plays up for his mother's attention. "I do something so she has to see and talk to me. If Stanley is watching TV and I just stand in front of it, she has to come and tell me off."
Autistic people often have little sense of another's mind; nor do they feel a need to be sociable. So having a brother with autism is different from having a sibling with other disabilities. But there are shared feelings and experiences. Monica McCaffrey, chief executive of Sibs, a charity offering support for those with disabled brothers or sisters, says: "They feel they don't get enough attention from parents. Sometimes it's about daily activities and sometimes it's about being the emotional focus. If they could change anything, it would be that."
But it's not easy to change. I have three children, and the eldest is disabled. Storme is 19, a drama student and uses a wheelchair. Her sister Savanna, 11, recently said to me in anger, "You don't pay any attention to me! Storme is your special one."
"Lots of siblings hate the word special, because it's never applied to them," McCaffrey says. "Once we ran a session for siblings in a local school. A boy – a sibling – came in and saw a notice about special needs. He went over and tore it down. He couldn't stand even seeing the word."
Many parents loathe it, too. My daughter isn't special. She's disabled. But it's difficult not to over-praise the disabled child. I remember one appointment with an eminent pediatrician when my daughter was a baby, shortly after her diagnosis. The doctor leaned towards me and whispered, "Your daughter will always disappoint you", as if delivering a dirty secret. Of course, the opposite is true. Every achievement – from taking a bus on her own to Oxford Street to getting into university – is a source of immense pride, as she has done it despite everyone presuming she wouldn't. It's hardly surprising she's more praised than her siblings. My two other children simply do what's expected of them, without meeting either resistance or astonishment.
But from the sibling's point of view, it might not look like that. "I used to be really into basketball and was fairly good at it – I had a team I played for," says Daniel Petralia, 25, who lives with two flatmates in a house in south-east London, close to his parents and sister Maria, 44. Maria has cerebral palsy and epilepsy, is a bit wobbly on her legs and struggles to understand. "My parents never came to watch me. It would have been nice, but it never happened. Aged 12, 13, 14… it would have been nice." There is no hint of resentment as he speaks, no bitter wash over his words. He repeats, after each thought, "That's just the way it is. I know it's not her fault. That's just the way it is. I can't change it."
Maria attends a day-care centre during the week. But she used to do the looking-after. "She was like a second mother to me for a while," Daniel says. "She'd make tea. Then there came a point when I started looking after her. I was about 10, just before secondary school. There were certain things I knew I could do that she couldn't, such as cook egg on toast. I used to like bacon a lot. I used to like pancakes. So I started doing things for her as well as me.
We speak to families who know to find out what it's really like to grow up with a disabled sibling
"I remember when I first had the sense of responsibility. I remember lying in bed – I was 12. I remember the realisation. This was for life. I had to look after her. Next day I forgot about it. But I revisit it a lot. Whenever I have to make choices – like choosing a career. That's the reason I picked osteopathy. I wanted the flexibility to work when I wanted to work and three to four days a week.
"My biggest worry is what happens when my parents can't look after her any more. At some point – maybe it's five years, maybe it's seven… The options are I look after her. But there's only one of me, and I have to work. Or perhaps I have to stop working."
Daniel's thinking out loud, debating with himself what would be best, for him, for Maria, as if I weren't there. "I sometimes wish I had other siblings, so I could say, 'Can you look after her today, because I have to work?'"
Although Daniel left the family home three years ago, it's as if any day he may be called back. "It still doesn't feel like home here," he says. Three men's worth of just-washed underwear, jeans and T-shirts are airing on surfaces, the sofa, the kitchen table. "I haven't put my stamp on it. My room is just a bed and wardrobe. I don't have anything on the walls. My flatmates have loads – posters and things. But I don't. Perhaps in a way I have an idea I'm not going to be here very long."
I ask if he would one day like to have his own family. He is very quiet. He swallows. "I do. She'd be amazing with them." He drums the side of his mug of tea. "I'm not entirely sure it would work," Daniel says. "She is a huge factor with girlfriends. My current one hasn't met her. It won't progress until they meet my sister and see if she likes them. I see how they are around her. It has limited my options. One relationship ended because of it. I wouldn't want to be with someone who couldn't accept my sister. That is a deal-breaker.
"More than anyone else in the world, my sister's love for me is unconditional. No one else will ever love me like that. Ever."
It is clear that Daniel loves Maria, too. It's a rare love – enduring, binding, reconciled. In many ways, it's the sort of love we all seek to know.
Ellie Akyuz Holgate, 19, is a sociology student. Her brother Louis, 16, is still at school and has Down's syndrome. "I wouldn't change Louis in a million years. He's the nicest person I know. It upsets me when people say how he won't be able to do this and he won't be able to do that. He's actually better than others at most things. He's got such a positive attitude – he doesn't worry. Even if I'm stressed, whenever I hang out with Louis I feel a million times better.
"I don't remember the first time I was told Louis was disabled. It was always a given. It was just: this is Louis. When I was in primary school people would say, 'What's wrong with him?' I'd say, 'There's nothing wrong with him. He has Down's syndrome. That's how it has always been and that's who he is.' " For Ellie, as for Daniel, growing up with a disabled sibling is "just the way it is".
But it's more than that. It's realising, very young, that every choice involves someone other than yourself. It's knowing that assumptions about what you can do, and how you will be perceived, are different from other people's. That your life, like your disabled brother or sister's, will be different. "I always assumed that at some point I would look after Louis – that he would live with me, and I would look after him," Ellie says.
Despite everything, Victor and Stanley love each other, even if they both struggle to show it. On Friday afternoons, Victor often goes with Rosie to collect Stanley from the coach back from his weekly boarding school. "I like going to pick him up. I like seeing him. But he doesn't like seeing me. We go for fish and chips, because that's his favourite. It's not my favourite – but I like it." .
• Understanding Stanley, by Rosie Barnes, will be published next spring.