March 21 marked Down Syndrome Day both Internationally as well as in Ontario. In 2016, the Ontario legislature passed the Down Syndrome Day Act recognizing the need to advocate for those with Down syndrome and making this an official day to celebrate those with Down syndrome. This is a day to draw attention to the fact that your number of chromosomes doesn’t impact your value.
MPP Sara Singh (NDP-Bramptom Centre) understands this, and recently introduced a private member’s bill in Ontario seeking to end the discrimination those with Down syndrome face.
Singh’s bill, Harvey and Gurvir’s Law, focuses on how a prenatal diagnosis is given, ensuring that parents are given up-to-date information about Down syndrome. It also ensures that parents would be given time to process a Down syndrome prenatal diagnosis, seek out additional resources, and make connections with other families.
“I am so thankful to see the Ontario government focusing on ending discrimination against those with Down syndrome. When it gets debated in May, I am confident we will see MPPs from all parties supporting this,” says Sarah Valiquette-Thompson. Valiquette-Thompson is mom to Harvey, a young boy with Down syndrome and one of the namesakes for this bill. “Sara Singh has been incredibly supportive and willing to advocate because she understands – having a sister with Down syndrome, she comes from a family where loving someone with Down syndrome is part of everyday life.” Singh’s sister, Gurvir, is the other namesake for the bill.
Valiquette-Thompson became a Down syndrome advocate after being overwhelmed by the negativity that came with a prenatal diagnosis of Down syndrome for her son. Her efforts led to the formation of Perfectly Me, an organization with the slogan “Advocate, educate, legislate for Down syndrome.” They seek to ensure that parents receiving a prenatal Down syndrome diagnosis are not pressured to make quick decisions and are quickly put in contact with the Down syndrome community.
“Hearing from families lucky enough to have a child with Down syndrome is so different than sitting in a doctor’s office listening to a list of risk factors and outcome predictions,” says Valiquette-Thompson. “We heard from doctors that our son was going to be a burden. We were questioned on why we would continue the pregnancy. Nobody told us the joy Harvey would bring to our life. There was so much pressure and outdated information, and that needs to change.”
“We have an incredible Down syndrome community in Ontario and across the country,” continued Valiquette-Thompson, “and this is the resource people need first – real people who understand the unique beauty of these wonderful children. We have worked in unison with the Down Syndrome Association of Ontario for the past two years, the Chair Domenic Gentilini, continues to hear from families across the Province that the information some families receive is extremely outdated, and difficult to locate. We are supporters of inclusion and we believe that each and every one of us is who they are meant to be. Harvey and Gurvir’s law would be a great step to advance that recognition and inclusion for those with Down syndrome.”