I don’t remember having to be told that my brother was disabled, but I have to break it to other people all the time.
When people ask if I have any brothers or sisters, I tell them I have a brother. They ask how old he is, and I say he’s my twin. This immediately gets them excited. They want to know if we went to the same school, if we look the same, if we can communicate telepathically. I feel like I’ve made the conversation awkward when I tell people that he’s severely disabled. (I wish there was a better word for “really disabled” than “severely”.) Teachers go quiet and walk away, casual friends apologise as if it’s their fault, and people look embarrassed to have asked in the first place, as if I’ve confessed a deeply personal family tragedy.
The best kind of person asks lots of questions. They’re insatiably curious. Their desire to know more outweighs any embarrassment. I know if the situation was reversed I would be too shy to be this kind of person, but they’re brilliant because they keep the conversation going. I’m normally a little bit intimidated by extremely confident people, but not when they’re brave enough to ask me about my brother.
His name is Jack, and we were born 11 weeks early. Jack weighed 3 pounds 2 ounces and I weighed 2 pounds 10 ounces. A few days after we were born, Jack had a brain haemorrhage. He was left with cerebral palsy, hydrocephalus (water on the brain), and epilepsy. He can’t walk, talk, or interpret images that he sees.
While I’m aware that finding all this out must have been awful for my parents, I don’t remember any of it. I’ve never known anything different. We’ve always had a disabled parking space outside our house, always jumped to the front of airport queues, and always had silly family traditions to keep Jack entertained.
When he was little, Jack would scream when the car stopped at a red light, so we would chant “Red light Jack! Red light Jack!” until he laughed. Right before he’s about to cry, he sticks his bottom lip out for at least a minute, giving us time to sing the “Put that lip away, Jack” song. During mealtimes we have quizzes or play alphabetical word games so he doesn’t get bored. Relatives and friends who come to visit are swept up into it. One minute someone is a total stranger to the house, the next they’re trying to come up with a fictional character beginning with Q. I think it’s safe to say that our interactions with guests would be a lot more boring if we didn’t have Jack. We’ve always had a disabled parking space outside our house, always jumped to the front of airport queues, and always had silly family traditions to keep Jack entertained.
As a child I read a couple of books from the point of view of children with disabled siblings. Neither of them reflected my experience. In one, the disabled little brother died at the age of 2. Obviously this happens, and it could have easily happened to me. The only part that didn’t ring true was the main character’s school friends, who immediately made fun of her brother when they found out he had been born with impairments. I don’t know if times have changed since 1988, when the book was published, but since 1992 my childhood friends have been, at best, kind to Jack and, at worst, indifferent.
In another book, the main character was embarrassed to invite friends over to her house because she didn’t want them to meet her disabled sister. This didn’t seem right either. The disabled sister was older, so the main character could never have known anything different. Nearly all of my friends met Jack so long ago that I don’t remember it, and by the time I introduced my university friends to him I knew everyone was an adult and would be mature about it.
None of this is to say that I had no negative childhood experiences because of Jack. I was often jealous when I saw friends playing with their brothers or sisters. When I was 10, I kicked a friend at a sleepover after watching her kick her little sister in the face, because I couldn’t understand how anybody lucky enough to have a nondisabled sibling would want to hurt them like that. I know better now. I’ve never had the same reasons to fight with Jack; we’ve never had to vie for our parents’ attention, never had to argue over whose turn it was to use the internet when we only had dial-up, never fought over possessions or who got the best GCSE results. Jack is not comparable to me as we cannot be measured on the same scale. I’m confident that our parents love us equally (or at least, that’s what my mum said when I asked her). My achievements are not his shortcomings.
I’ve been lucky. When Jack has become dangerously ill, so ill that he could have died, I was either so young that I had no idea what was going on, or so young that I was deliberately kept in the dark. The shunt in his head that drains out the brain fluid has blocked twice: once when we were 3 (I have a vague memory of knowing Jack was “poorly”) and once when we were 13. At 13 I knew the medical situation, I knew that he was in and out of hospital. But nobody told me he could have died. Looking back at my diary from the time, it’s pretty horrifying how quickly I jump from a casual mention of Jack’s hospitalisation to a lengthy paragraph about someone saying something mean to me at school. I didn’t find out how much danger he was in until afterwards, when he was out of the woods. They didn’t want to worry me.
The greatest emotional distress Jack has ever caused me is worrying that I’m not worried enough, which is a luxury problem. Jack is fine. He lives in a house with four other young disabled people, and 24-hour care. The people who look after him are almost supernaturally lovely. For our birthday they arranged for four actual owls to visit his residential home and fly around landing on his knees. I would not be able to do what those professional carers do. Jack needs constant attention: He needs people to read to him, talk to him, feed him, change his clothes, wash him. As his sister, I’ve never done anything beyond what I would consider to be the normal sibling call of duty. I’ve not done anything shower- or toilet-related, apart from when we were so young we would share a bath. I’ve never fed him more than a mouthful. The most I do is read to him and sing to him, which I see as the equivalent of the conversations we would have if he wasn’t disabled. And really, I benefit from this too. He’s the only person who appreciates my out-of-tune rendition of every song from The Sound of Music.
Jack is different from anyone else I’ve ever met; he remains the most purely good person I know.
The only thing I feel that I miss out on is the twin-ness. I’ve never spent much time around other twins, particularly not boy-girl twins, and I suppose if I did it would make me sad. There’s a whole parallel universe that I try not to think about where everyone knows Jack and me as “the twins”, where we went to the same school, where he’s friends with my friends, where we argue about things. I can’t fully imagine what Jack would be like if he wasn’t disabled. I don’t know what his political affiliations would be, or his annoying quirks, or what else might have surprised me had he grown up like everyone else.
As Jack is different from anyone else I’ve ever met, he remains the most purely good person I know. I sort of believe that everyone (including myself, and everyone I love) is a bit of an arsehole. Jack can be irritating. He shouts, he’s grumpy, he won’t be satisfied with any song on his iPod or any book you read to him, but he doesn’t have the intellectual and emotional capacity to be mean.
It’s not a good thing that Jack’s disabled, but it feels like the sad bit happened a long time ago. I was born two minutes after him, so I didn’t have the opportunity to build up alternative expectations. I missed out on all the regular twin stuff, although sharing a birthday is still pretty great, but I know that if it wasn’t for Jack I would be too shy to be comfortable in the presence of other disabled people. I flinch at the word “spastic” in a way I might not do otherwise.
Although I don’t always see Jack’s disability, this doesn’t mean that I don’t see any disability. I’ve got more used to other disabled people now, but when I was younger and would go to Jack’s school with my mum to pick him up I would see a crowd of people with unfathomable impairments, and Jack would look like the odd one out.
So when I tell people I have a disabled twin brother and they’re uncomfortable, I feel like I’ve misled them. What I really have is Jack, my twin, who happens to be disabled. He’s not a sob story, he’s just Jack.
Written by: Anne Suslak BuzzFeed Contributor
Rebecca is an independent publisher working to help siblings of children with emotional challenges.