Meeting Lucy was one of those Universe-conspiring moments. I stumbled upon her blog one night whilst feeding my baby and I immediately felt connected to her words, beautiful in their simplicity, describing life as a creative spirit and mother of two (now three!) small girls. It wasn’t until later that I discovered Lucy also has three sisters, one of whom has Down syndrome, and I realised we were both part of ‘the club’. As well as just loving the way Lucy writes, I really value her thoughts on growing up with a sister who has Down syndrome, and feel like I learn so much from her sibling perspective. Thank you for sharing another beautiful, thought-provoking post with us here x
When we were children, we were simply sisters.
When we were teenagers, I was embarrassed and ashamed of that.
When we were in our early twenties, I was a fierce and lethal advocate with a major disregard for other peoples’ perspectives if they weren’t my own (you too?).
In our thirties, we’re at a fork in the road. I’m a mother, a spokesperson. I’m a fierce and loyal advocate, I’m not embarrassed. I’m a bit angry sometimes. I can feel jaded.
But peel away the layers and the incidents and the battles won and lost, and there we are again, having a cup of coffee, talking about life, whingeing about our parents and enjoying the complexities of the day to day. Teasing each other, bickering, laughing.
Just another bunch of sisters.
* * * * *
It was a day not unlike this one that my mother gave birth to my first little sister. I don’t remember the events, I was only nineteen 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 is 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, the baby had 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, and some of you will know that my sister 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 mounted up, displayed, she’s parked up on her pedestal:
Independent
Married
Intelligent
Employed
Brave
All the things you thought she was not, could not ever be. She is used to showing other people: This Is Possible. And then? She’s left alone, a job well done, and 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 and I myself am guilty of elbowing her onto the throne. But I don’t want this to be her peak. Who would? At aged 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 amongst 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.
Recently Mum discovered a pile of towels lodged around the base of my sister’s washing machine. Apparently it had been leaking. She peeled the towels away; they were dried and thickened with old water and mould. She told me about this over the phone and my initial emotion was fury. I wondered why no one had reported this, why no one had helped Em to fix the problem she had obviously attempted to problem-solve independently. What may seem like a simple issue often requires ironing out or workshopping (whose role was that anyway?), while still supporting and maintaining individual independence.
As a sister I often feel stuck between teams; my sister on one, the parents on another, and then the service provider, mostly working together but sometimes not seeing what people in our generation tend to see. I can feel frustrated over a lack of authority but then again not really want it anyway, I shout demands but I don’t always feel listened to, I try my best not to step on anyone’s toes, I try not to pretend that I’m more important in this situation than I am. Sometimes it’s hard to know where you fit, as an adult sibling looking ahead at the road you are walking down, following time and its inevitable events.
* * * * *
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 may seem 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.
The larger issue for me here is not one of sentimentality. I’m not blinded by my love for my sister. I’m not romantic about Down syndrome. I don’t need an extra chromosome in my vicinity to discover challenge or difficulty or difference in life; that comes of its own free will, like it or lump it.
But the cold hard fact is that Down syndrome, for me, is Em. It is the full life she leads and the value she brings to her local community and the volunteering she does and the job she has and her personality and her smile and her thoughts and the friendship and sisterhood and insurmountable significance and richness that she has brought, and will continue to bring, into my life. It’s – she’s – not a project that raises a problem and a subsequent list of solutions.
I can’t help but hope that if people had access to real, true and balanced facts about Down syndrome (dare I mention it? more awareness) that instead of seeing difficulty, disability, despair, they would see the other side of that.
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.
Lucinda is the mother of three small children and in between school drop-off and life, she writes. She is passionate about disability culture, community development, parenting, birth choices and simple living. You can find her at Motherwho and on Instagram.
