World Down Syndrome Day is March 21st, a date that was chosen because the condition is defined by the triplication of the 21st chromosome. This triplication leads to a predisposition to a number of health challenges, including:
But the fact is that people with Down syndrome can and do lead happy, fulfilling, productive lives. And the time has come to stop defining people living with the condition by their various challenges, and start to see them for who and what they are, and can become.
About Down Syndrome
The condition was first identified in 1862 by Dr. John Langdon Down. It was only in the 1950s that scientists linked the condition to the existence of an extra chromosome. This in turn led to a test, launched in the 1980s, called CVS or prenatal “screening” that can be done during pregnancy to let parents know if their child has Down Syndrome. This has come to be a huge issue for the Down syndrome community as some parents decide to abort their baby upon finding out that their child has Down syndrome.
Medically, huge advances have been made in the treatment of the health conditions associated with Down syndrome. Currently, 1 in every 750 children born in Canada has Down syndrome, but their prospects for long-term survival are much better than they’ve ever been. In fact, a child born with Down syndrome in the 1970s couldn’t expect to live past the age of 15 or 20. Today, people can live with Down syndrome to the age of 60 and beyond.
Early intervention is key for children born with Down syndrome
Forty percent are born with heart defects that often require surgery in infancy. Pneumonia and other respiratory infections are by far the most common cause of death for children with Down syndrome. Rates of leukemia and other cancers are also very high. But armed with this growing knowledge of the challenges, doctors are getting better and better at identifying problems and treating them as they come up.
Now that people with Down syndrome are living longer, healthier lives, however, there is a growing movement to remove the stigma that is associated with Down syndrome, and to help people with Down syndrome face barrier-free environments.
Stigma and today’s societal practices
Many Down syndrome advocates see the ongoing practice of prenatal “screening” as a concerning practice as some parents who are told they are having a baby with Down syndrome choose to end the pregnancy. And some medical professionals encourage this approach. Clearly, we have a ways to go before we can truly say that we are an inclusive society.
Understanding the different types of Down syndrome and varying degrees of how it can affect your child is taking one step closer to ensuring your child is supported and gets the best start in life.
We need to change the dialogue around Down syndrome
The solutions being put forward are all very common sense in nature, and they focus on changing the dialogue around Down syndrome. We are all encouraged to use positive, person-first language when talking about people with Down syndrome, and to focus not on the things they can’t do, but on the many, many things they can and do contribute.
So, on March 21st, we ask you to #SeeTheAbility.