Downs With Ups

Hello dear Reader. This post isn’t about Poppet, per se; it’s more about Down syndrome and those across the globe, who have an interest in it.

Through my administrative access to this website, I receive data about the number of people who read my blog and the countries in which they live. I love the fact that I’ve had readers from places from around the world; places in addition to Australia, such as the US, Canada, Spain, China, Russia Israel and Brazil. I look at the statistics and see where my readers live, and wonder, ‘who are you’? I try to imagine what their interest is, in Down syndrome and what their lives might be like.

My readers come from places, like Namibia, that are so widely divergent to my own home; places where the political, cultural, social and environmental circumstances are extraordinarily contrasted to mine here. I couldn’t begin to imagine what it would be like raising a child with Down syndrome in a developing nation, where access to medical and specialist support might be limited.

In such an environment, it would be incredibly difficult to have the same expectations as I do for Poppet and her life ahead, whereby we demand equality and have access to a wide range of resources; these things will help her develop into an adult who will ultimately contribute to society and live a full life. Even though these resources are limited in our society, I feel incredibly fortunate when I consider that there would be families with a child with Down syndrome, who don’t even have access to basic living standards.

With this in mind though, children with Down syndrome born into third world societies, I imagine would have exceptionally strong ties to their family and community. This is quite different to us here in Australia, where we often don’t even know our neighbours and our families are spread far and wide.  Having said that, I read the other day that a mother to a newborn baby, in Armenia divorced her husband because their son has Down syndrome and she didn’t want shame to fall on her family.

Anyway, back to my readers. Despite such disparities, we all have one thing in common, and that is our interest in Down syndrome, as a parent, relative, friend, professional or even someone with a passing interest. This one thing unites us.

According to Down Syndrome Education International, there are around 1.6 million children with Down syndrome. I guess this is a very small percentage of the world’s population, but it’s an important statistic. It’s really only been two or three generations since these people have been ‘allowed’ to live outside institutions.  We have yet to help people with Down syndrome fully reach their potential and critically, we have yet to eliminate the stigma of difference.

Additionally, we have yet to put an end to the stereotypes that are often placed on people with Down syndrome. “Oh, they’re always so happy,” I hear from people when they are referring to people with Down syndrome. Depending on my mood, I’ll help them understand that Poppet actually experiences a full range of emotions, just like people without Down syndrome, or I’ll just let them live in their own ignorance.

Again, depending on my mood at the time, I’ll ‘correct’ someone who uses the terms, ‘Downs girl’ or ‘Down syndrome boy’. I’ll suggest to them that they say, ‘girl with Down syndrome’ or ‘boy with Down syndrome’. This is a subtle difference and you’ll see by trying it yourself, that it shifts the focus from the syndrome to the person.

We don’t say, ‘wheelchair man’ or ‘cancer woman’, because for some reason we can accept that humans can have these conditions and yet, not be labelled as such. Instead we say, ‘the man in the wheelchair’ or the ‘woman with cancer’, always putting the person first. Maybe that’s because we can identify with these types of people, whereas Down syndrome is still foreign.

I’m fortunate in many ways, when it comes to Poppet.  The most important fact is that I speak English.  Language is important for it helps me to achieve a number of things.  With it, I can correct prejudice, ask for help and assert our needs. All of which contribute to Poppet’s development.

When Poppet was born, she spent time in neo-natal intensive care (NICU). There was one baby who had only been visited by men, one of whom I assumed was the father. The men spoke only Arabic, so I never spoke with them, only smiling acknowledgement of each other. I’d never seen the baby’s mother.

After several days, the mystery as to where the baby’s mother was became clear. She had been a patient at another hospital, whilst her baby had been brought to this NICU for special care.  On this particular day, she was well enough and had come to the NICU accompanied by her uncle.

She was also from the Middle East and it seemed spoke very little English. She relied on her uncle for interpretation. It was here, with words translated from the nurse by her uncle, that she learned her baby had Down syndrome.

I couldn’t imagine how difficult it would have been for this woman, having to receive such news through a third party, not to mention trying to understand all the medical processes in a foreign language. I felt tremendous concern for her. I saw that she now had a future ahead of her, with a child with a severe disability and the huge disadvantage of not being able to communicate.

Although there was a great chasm between us culturally, I shared something in common with that woman. I wanted to be able to reach out to her, to somehow communicate that we were experiencing the same profound changes to our lives together. Sadly, I never saw her again.

So, to all those people out there who take an interest in Down syndrome and who take the time to read this blog, thank you. By doing this one simple thing, you are changing the world for people with this condition.