What I Want You To Know About My Sister Who Has Down Syndrome

People are different. So what?
Lucinda, Emily and their sisters.
Lucinda, Emily and their sisters.

It was a day just like this one when my mother gave birth to my first little sister. I don't remember the events -- I was only 19 months old -- but I do have a milky memory of the feeling of that time. A curiosity, an unknowing. There is a photo of me peering over the edge of the bassinet to see what was inside. I saw a baby. But not everyone did.

There was something different about this baby, and some saw it as an error. You see, Emily has Down syndrome. At the time, I didn't know what a stir she would cause. What a ripple, what a shock. All I saw was a baby. All I saw was my baby sister.

We grew into children and two more sisters were born. Now there were four of us. They were all the same to me: mostly good playmates, sometimes annoying and each one as loud as the other.

Suddenly we were women. Now, Emily is married and her husband also has Down syndrome. They live together, just the two of them, and have a small number of support hours each week.

The weird and wonderful thing is Em is always seen as a success story. She's put on a pedestal: independent, married, intelligent, employed, brave.

She is used to show other people that this is possible. But then she's left alone, a job well done, as more dire cases find their way back into the limelight.

I don't mean to speak unfairly. There aren't many people in her situation, and as a sister I am immensely grateful for the amount of independence she has been able to achieve. I, too, am guilty of elbowing her onto the throne. But I don't want this to be her peak. Who would? At age 32 having seemingly achieved everything you ever will?

What I think is sometimes overlooked is the complexity of my sister's life. For starters, her relationship is, in fact, not just a relationship between two people, but a relationship between two people, their two families and a service provider as the cherry on top. The intricacies of balancing the couple in the middle with those on the sidelines are incredibly multifaceted. We're all in there getting among it, each one of us coming from a different position within the family, with different life experiences of Down syndrome, from varied generations, with different thoughts, feelings and opinions.

It's complicated.

Years ago when Em got married, a film producer wanted to develop a documentary about her relationship. Initially everyone agreed, Emily enthusiastically, as she quite likes the idea of being on the big screen. But then suddenly there was a woman with a camera at one of our dress fittings. After I had finished doing up the back of Em's gown she asked me: "Could you do that again, but could you get a little closer to her and look at her a bit longer?"

The very act of repeating that intimate action of Em trying on her dress for the first time suddenly horrified me. It felt too private to be having these moments filmed for everyone to see. This is our ordinary; not something to gawk at. I imagined jaws gaping, mouths hanging open.

I realise this is completely unfair of me. My heightened sensitivity comes from a lifetime of listening to inappropriate questions, of prying. The overwhelming feeling of defensiveness and the need to stand up for her bears down on me every time I hear someone make yet another ill-informed comment about "Downs people" (yes, we were born in the '80s).

The one thing I have always wished for is that people just relax a bit about difference. Let's all just calm down a little. So people are different. So you lead an independent life and then you're in a nursing home. So you get an illness and you need medical attention. So you are depressed and your next door neighbour has to cook you dinner and take your kids to school. So you have a disability and you need a support worker. So not every kid in the class gets an A+. So you're blonde and I'm a red head.

I can't help but hope that if people had access to real, true and balanced facts about Down syndrome they would see the other side of the difficulty, disability and despair.

I hope they might see the value of bravery in the face of hardship, the cheering after battles won, the scars and challenges brought by diversity, but ultimately the strength and the beauty and the preciousness bound up in individuality in an increasingly insipid and self-serving world.

I hope they might see a life that is fresh and raw. A life that is real and worthy, both to its owner and to all those lucky enough to find themselves inside the frame.


October is Down Syndrome Awareness Month.