I can’t really say that I’ve grown up in a ‘normal’ family. I am one half of a set of identical twins and my older sister (Nancy) has a rare disability that effects her in pretty much every aspect of her life. Growing up in this strange dynamic took patience.
When I was a toddler I have vivid memories of sharing cramped baths with both sisters and being engulfed, nay, suffocated in Nancy’s boa constrictor type hugs. These hugs had no squeeze restrictions, and while they were exceptionally uncomfortable for the receiver (they still are, that girl has some grip!) there was no doubt that they contained the most amount of love a person could possibly bare.
When I was in reception I remember being exceptionally jealous of Nancy’s endless days off school. Sometime’s she’d go on ‘holidays’ for a number of days and when she’d return she’d have cards and presents, the stuff a five year old dreams of! I wanted in. So, my mum took the three of us out of school for the day to show us what Nancy got up to on her ‘holidays’.
We went to Guy’s hospital. Nancy was popped into a wheelchair on our arrival. It dwarfed her tiny frame and she cried, her face terrified and her eyes glazed with tears. She was taken off with some nurses and doctors and we were told to wait. So we waited. And waited. And waited. And there she was. Lying on a hospital bed, being wheeled back in to be woken up. She was unconscious, mouth open, face swollen and angrily bruised. The blood was still damp and sticky on her face.
Nancy’s ‘holidays’ were bouts of maxi facial surgery. When she awoke, she didn’t complain, she didn’t feel sorry for herself. But I did. I felt so sorry for my jealousy. I felt so guilty for wanting in.
When I was in primary school I remember patrolling the playground with my twin, acting as Nancy’s bodyguards, making sure if any cruel kid took a pop at Nance we’d take them where the dinner ladies couldn’t see and kick their shins in. Okay, so probably not the best way to deal with things, but those kids learnt not to mess with Nancy, or they’d have to deal with us. We were like the Tweedledum and Tweedledee of the playground mafia.
When I went to secondary school I remember everyone around me using words like ‘spaz’ and ‘retard’ to insult each other. I remember trying to explain the origin of those words and how they were offensive. I remember my peers taking the piss out of people with disabilities, on the bus, on the telly, whenever and wherever. I remember trying to say something when a particularly nasty girl made some horrible remarks about a woman with Down Syndrome and being told to ‘get off my high horse’.
When I was in sixth form, I set up a campaign called ‘Let’s Talk Disability’. I wanted to do something to encourage people to get to know a person, rather than limiting that person to their disability. To not feel pity. To not pass judgments on someone else’s quality of life.
Nancy is happy. She does not have a lower quality of life than you or me. She actually has a pretty great life. She does not let her disability limit her enjoyment of the world around her. The only thing that limits Nancy’s quality of life is society’s view of disability. The ‘other’. The ‘unknown’. The glares she gets when she’s out in public or the nasty comments in the shopping queue.
She is not happy because happiness is a symptom of her disability. She is happy because she works hard to get where she wants to be and she is happy because she is loved. Sometimes she is sad, sometimes she gets angry but most of the time Nancy is happy.
I love my sister. I love that when I shower or bath her, she gets out and hides under the towel, giggling uncontrollably. I love that if she does something to upset me, a sorry note saying that she loves me will be posted under my bedroom door within minutes. I love that if I take her to the park in her wheelchair, she’ll end up pushing me. I love that whenever I read her a bedtime story she always asks me who the illustrator is and will insist on me doing the voices.
I love how trusting and open she is. I love how she sees magic in the world in places I’d never expect. I love that she calls cuddles ‘meep meeps’. I love that she has her own faith that has developed and not been taught. I love that most nights when she dreams, she dreams that we are mermaids, eating cake under the sea. I love how she sings at the top of her lungs with her headphones on, then demands that I tell her she has the voice of an angel.
I love that she writes poetry like this:
I love Nancy because she has brought a vast amount of joy into my family. But I also worry. I worry over the cruelness of the world. I worry for her future. Will she always have the funding for her specialised care? Will she be able to remain as independent as she can be if this funding is cut? Will a future carer take advantage of her?
In many ways it feels like we’re still in the playground and I’m still on patrol for Nancy, trying to protect her from and fight against those who mistreat her both knowingly and otherwise. Only now we live in different cities and I can only worry and try to defend her from afar.
And these worries will prevail for as long society remains ignorant and prejudiced toward disabled people. So let’s get this straight. Disability or no disability – my sister is a valuable member of society and she makes this world a happier and more beautiful place. Any talk from bigoted politicians that suggests otherwise (I’m looking at you, UKIP), is wrong.
Ella is an aspiring stand up comedian studying in Edinburgh. She lacks the ability to filter inappropriate jokes and she thinks unicorns probably existed at one point or another. She currently spends her days cruising Gumtree for a kitten, and she recently discovered that she is Gluten and Lactose intolerant. If you see someone in Edinburgh sipping on double cream in secret and then complaining of a sore tummy, it’s probably Ella.
If you’re interested in getting involved with PTL – drop us an email on firstname.lastname@example.org.
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