Good morning everyone, and happy Monday, but more specifically, Happy World Down Syndrome Day! Today, I am so excited to welcome a dear friend to the blog in honour of this very special day, Tamara Taggart. For those of you who don’t know Tamara, she is a community leader, activist, veteran broadcaster, cancer survivor, mother, and former candidate in the 2019 Canadian election. Tamara and her husband Dave have three children—son Beckett and daughters Zoë and Poppy. They also share their home with George, their Airedale Terrier, Penelope, their rescue dog from Mexico, and rescue cats Broccoli and Brussel Sprout.
Tamara’s son, Beckett, was 5 days old when they found out he has Down syndrome, and today she is sharing that an extra chromosome isn’t something to fear, but rather something to celebrate!
Happy World Down Syndrome Day!
Today is 3/21, or World Down Syndrome Day, a day celebrating people with 3 copies of the 21st chromosome. This year the theme of WDSD 2023 is “with us, not for us.”
My son Beckett is 15 years old. He goes to school, has friends, and is a true spark of positivity. Beckett loves HotWheels, pizza, and his family. He has a great sense of humour and is stubborn (like his mum). Beckett has feelings, a unique personality, and the ability to make you a better person. He’s very good at video games and will kick your butt in a dance-off.
I share these things about my son to help others understand that an extra chromosome isn’t something to fear, we all come with our own challenges and unique personalities. For so many years, I felt pressure to prove my son’s worth to others, society views disabled people as broken but I’m here to tell you there’s nothing to fix.
One billion people, or 15% of the world’s population, experience some form of disability. People with disabilities are the largest minority group on earth and it’s a group any of us can join at any time. Most of us will join this group at some point in our lives. Disabled people are commonly the poorest people in society, experiencing social exclusion and discrimination at all levels.
We have been groomed to believe that having a child with a disability is nothing to celebrate, this narrative has been fueled by non-disabled people. It’s not only dangerous but it is wrong, it’s because of this discriminatory belief that we are constantly fighting and advocating for basic human rights for individuals like my son Beckett.
Beckett’s Down syndrome diagnosis was a huge surprise, as a 38-year-old woman pregnant for the first time, I went for all the necessary tests, including a nuchal translucency screening. I replay that time in my head often when my results came in the news was ‘good’ – in fact, the doctor told us he had never seen such impressive numbers. I was assured I wasn’t having a baby with Down syndrome. I remember feeling confused and worried, I now recognize how the experience was laced with fear and eugenics, it’s woven throughout healthcare. Time has allowed me to recognize the constant assault of ableism.
Beckett was five days old when we found out he has Down syndrome, the news came on the phone and I’m not going to lie, it felt devastating. We were so scared, we didn’t know anything about Down syndrome, and the little bit we did know was negative and came from people working in healthcare. Our sadness was short-lived, we met other parents of children with Down syndrome and quickly found a community that we love beyond measure.
Two years ago, a group of parents and I started Down syndrome BC, it’s been a dream for a long time. We are parents, guardians, self-advocates, and caregivers who all love someone with Down syndrome. We also recognize that we have a long way to go when it comes to the support people with Down syndrome receive, and there are a lot of negativities to unravel. World Down Syndrome Day always reminds me that inclusion is a team effort, we need each other to create change.
I hope you know someone with Down syndrome, and if you don’t, I can point you in the direction of some fantastic people to visit on social media! Today is a great day to start exploring how you can contribute to inclusion and it’s a perfect day to discover people with Down syndrome all over the world who are breaking stereotypes and lighting the way for the next generation.
Happy World Down Syndrome Day.
This struck a chord with medical professionals and universities around the world, by reframing the way healthcare practitioners talk to patients.