We took a day off today to do some Christmas shopping. Simon went up to the next floor in John Lewis while I stayed on the ground floor to browse the hats and scarfs.
I noticed a couple of women a few feet away from me. More specifically I noticed one of them had Down syndrome.
While my life is filled with other children who have Ds (and other disabilities) I rarely have the opportunity to meet an adult with Ds and so I found myself watching them.
I worry about far into the future – 40 year old Scarlett. 50 year old Scarlett. I worry what will happen when we’re too old or no longer here to care for her….. so I watched, I guess hoping for some reassurance.
I’m not very stealthy so they spotted me very quickly. Embarrassed I apologised for being rude and explained my daughter has Down syndrome.
The lady with Down syndrome told me her name, Sarah (name changed) and that she is 48. She told me her mum is in her nineties so doesn’t like to shop now. She showed me the new clothes she’s chosen – a very snazzy top and pair of trousers.
She asked to see a photo of my Scarlett and said she’s very pretty.
Sarah had a companion with her who joined in the discussion but quickly the conversation turned dark.
Sarah’s companion asked if I knew my Scarlett had Ds when I was pregnant. I explained I did not test either of my babies for Ds in pregnancy, a decision I have never regretted.
She then turned away from Sarah, lowered her voice and said “Sarah’s mum didn’t know until she was born. While she loves her very much, her advice to any pregnant mother carrying “a downs” would be to abort .
She might as well have slapped me in the face. I felt my stomach flip. I composed myself and said “I feel the complete opposite to that but appreciate times were very different 40 odd years ago.”
My eyes were burning with tears, I told Sarah it was lovey to meet her and moved away.
And then I couldn’t breath. I think I had a panic attack. I couldn’t breath, I couldn’t see straight, the room was spinning and tears were streaming down my face.
I went upstairs to find Simon. I couldn’t breath and I couldn’t find him. So, in a quiet corner of John Lewis I phoned my dear dear friend – who is also mum to a little girl with Ds. At times, she’s the only person in the universe who understands me.
I explained what happened, between gasps of breath and sobs and snotty tears with people staring at me as they walked past.
My friend listened. Cried with me for a minute and then reminded me – it’s always other people. It’s never us, it’s never our kids, it’s never people with Down syndrome. It’s ALWAYS other people with their shitty words and nasty views that do this to us.
So why say that. Why say that in front of her? Why say that to me? Why, when Sarah and I were having a perfectly lovely conversation tell me that her mother wishes she had aborted her. IN FRONT OF HER. To me, the mother a child with Down syndrome.
This pattern has been repeated over and over and over again for the last eight years and I am so unbelievably tired of it.
At 9 months old, at a routine appointment Scarlett’s Cardiologist informed me that if I chose to have more children I should “get tested early as abortions are easier in early pregnancy. Lovely as she is, you wouldn’t want another like her.” I cried for a week after that appointment.
Throughout my pregnancy with Katie I was repeatedly pushed towards testing for Down syndrome by practitioners despite repeatedly declining and asking them not to ask me again. My maternity care was compromised and the joy of my pregnancy tainted.
I’ve had family members, friends, strangers in the street, people in the doctors waiting room. Over and over this idea that Scarlett should not be here, that she’s a mistake.
At a recent orthotics appointment the term “Downsie feet” was used. This is far from the first time this type of language has been used by healthcare practitioners when talking to us.
A few years ago at a toddler dance class one of the other mums brought her parents in law to watch. I was heavily pregnant with Katie and had a lovely session dancing and laughing with Scarlett. After the session I learned the in-laws, once I was out of ear shot, said “what a shame, I hope the new baby’s not got it”. All these years later I remember how that made me feel. And asking “what did they see that was so terrible? I thought we were just dancing”.
Why. Why? Why do people do this to us? Would they talk to other people like this? Are they this rude, this vile to everyone they meet or do they genuinely view Scarlett and me as so unworthy of even basic common decency.
And the thing of it is. It’s all bollocks. None of this in anyway reflects our life. This view that people have, it’s not us. Scarlett’s bloody brilliant. She’s funny and bright and kind and I love being her mummy. She’s easy, she lives in the moment, she never holds a grudge, is never unkind (unless chocolate is involved, then she’ll fight you to the death). Our day to day life is great, we’re happy. But it breaks my heart that she will have to hear this, from strangers, her whole life.
I’m glad I met Sarah today. She was nice and she made me smile. But the truth is I’ve learned nothing about what Scarlett’s life will be like as an adult by talking to a stranger who happens to have the same number of chromosomes as her. Because that’s the only thing Sarah and Scarlett have in common. So maybe this whole episode has taught me something, even if it’s just to not stare at strangers in department stores.