Yesterday marked the start of National Down Syndrome Week. To be honest I am not really sure of what that means to me or us. The thing about Down Syndrome is that it is not like diabetes or cancer where the organization primarily raises money to find a cure. You cannot erase an extra chromosome from every cell in the body and therefore Down Syndrome will NEVER have a cure. Likewise, it has always existed. So the National Down Syndrome Society instead seeks to promote awareness and equal opportunities for individuals with Down Syndrome. We have come leaps and bounds in even the last 20 years. Truthfully, their work has probably played a part in my own view of individuals with disabilities and, as a result, in my own small little world I feel Ella has all the same opportunities as Jakob.

Because of the uniqueness of Down Syndrome compared to other “disabilities” I find myself unsure as to how to respond to things like purchasing calendars (which I think Ella will be in) or other propaganda or promoting National Down Syndrome Awareness week. What do I want/expect people to do? First and foremost Celebrate! This week is to celebrate the contributions that individuals with Down Syndrome have made and to recognize that they have abilities and aspirations like any other.

A word that often comes up is ADVOCACY. The Canadian Down Syndrome Society is the voice of individuals with Down Syndrome and is therefore the voice of my Ella. Be an advocate and stop discrimination towards these individuals. That being said I must reiterate that we have been so blessed by incredibly supportive family, friends and strangers that love Ella all the same. Thank you.

www.cdss.ca