My Son Doesn’t ‘Suffer’ From Down Syndrome - The Grace Tales

My Son Doesn’t ‘Suffer’ From Down Syndrome

The Grace Tales reader Nicole Dearden is mother to 7-year old Oscar, who has Down syndrome. She tells us what this year’s World Down Syndrome Day theme, ‘We decide’ means to her…

In a world gone mad, I hope this year’s World Down Syndrome Day on 21 March won’t fall under the radar as the current coronavirus pandemic continues to dominate headlines, incite panic, and for now, show no sign of dissipating.

The theme for World Down Syndrome Day this year is ‘We decide’, highlighting the right for people with Down syndrome to have full participation in decision making about matters relating to, or affecting, their lives. Effective and meaningful participation is a core human rights principle supported by the United Nations. It is difficult to believe that this right to participate does not exist already.

Alongside our focus on We decide to highlight how people with Down syndrome are active members of our global community, it is my hope that the media dispenses with its outdated language around Down syndrome. “Sufferers of this condition” and “Down syndrome sufferers” serves no one and only sustains an already out of touch stereotype and further isolation and fear because one thing we all understand is that ‘suffering’ is no good thing. The word evokes pain and loss and grief. No one wants to suffer. But as a mother of a child with Down syndrome I am not suffering. My seven-year old with Down syndrome is certainly not suffering – in fact, he is the happiest kid in town. I wonder then, who is?

We decide comes at the perfect juncture to challenge these misconceptions and change the vernacular. How many of us know that people with Down syndrome today have a normal life expectancy, go to mainstream schools and increasingly gain a college education and long-term employment? They also, like the rest of the ‘normal’ population experience their struggles. It’s just the word ‘suffering’ that sits uneasily with me.

We decide means so much to our community as we continue to fight hard for their right to an equal and inclusive contribution.

I can’t think of a better way for society to truly understand more about the condition than our kids having a classmate at school, or a work colleague or a friend with Down syndrome. My own situation has always been welcomed with the same two questions: ‘Did you know?’ and ‘Did you have all the tests? The answers are no and yes. Does that incite fear and panic, or even suffering, in you? We decide.

It loathes me to tell you that some of the stereotypes around Down syndrome are true. Generally speaking they are very happy and loving people, tactile beyond the norm and an emotional intelligence that is off the charts. But increasingly, many adults with Down syndrome are starting to face mental health issues and depression and I can’t help but wonder if it’s the years of carrying society’s judgment on them that has caused it.

I witness incredible moments every day where my son brings joy and light to complete strangers just with a smile or a hello. He is a singular force for change. If only he could meet everyone who ever had any doubt or fear then perhaps we wouldn’t even need a World Down Syndrome Day.

So for me, We decide means just that. We decide that people with Down syndrome have a right to contribute to society just as much as the next person. We decide to dismantle our own judgment and misconceptions about the condition. Lean in. Don’t be afraid. Celebrate these individuals and their right to participate fully in the world. We are all connected and not just by a virus.

World Down Syndrome Day is celebrated on 21 March 2020. If you wish to donate and support children with Down syndrome, Downright Excellent is a UK charity that works with children to support their speech and language development.