World Down Syndrome Day

Do you know anyone with Down syndrome? We do. One of my closest friends has a daughter with Down syndrome. Jess is now 23 and she lives here in Toowoomba in her own unit with the support that she needs. We have known Jess for just over 20 years now. She likes to dress up and have her nails done. She likes to laugh and have fun. She can also be as stubborn as anything. There have been plenty of challenges too in her life, but I don’t think her family could imagine life without her.

Dan also knows a number of people with Down syndrome who attend his activities at Yellow Bridge. Like all of us, they like to socialise, have fun and participate in all sorts of activities. And just like everybody else, they experience the full range of human abilities, needs and personalities. We couldn’t imagine the Yellow Bridge community without them.

Sadly though, many people with Down syndrome experience discrimination and exclusion. People make assumptions about their lives without getting to know them first. A while ago I was shocked to read some of the things that have been said to prospective parents by doctors – things that I know were simply not true. It’s true that there might be challenges specific to Down syndrome, but we all have to face challenges in life, and as it is often said, it’s not the challenges themselves that are the issue, it’s how you choose to deal with them that makes the difference. Everybody has something to contribute to making our society a better place. 

World Down Syndrome Day was first celebrated in 2006 and declared an international day by the United Nations in 2011. March 21st was specifically chosen for the day because it signifies the “ uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.” As human beings, we are a pretty diverse bunch. We come in all shapes and sizes, with more variety in ability, personality and capability than we can possibly imagine. Yet we are also very quick to exclude, denigrate and devalue difference. Too often Down syndrome has been seen as a tragic condition, rather than “a naturally occurring chromosomal arrangement that has always been a part of the human condition.” 

This year World Down Syndrome Day is inviting us to consider this question…

What does inclusion mean?

An inclusive society is a society that over-rides differences of race, gender, class, generation, and geography, and ensures inclusion, equality of opportunity as well as capability of all members of the society to determine an agreed set of social institutions that govern social interaction.  

(Expert Group Meeting on Promoting Social Integration, Helsinki, July 2008)

The UN Convention of the Rights of Persons with Disabilities calls for “full and effective participation and inclusion in society” for everyone. Think of all the things you do every day, during the week and throughout the year. Have you ever been excluded? Are there barriers in society that stop you from participating in life to the full? Imagine your life if you were excluded from doing the things you enjoy or take for granted.

 Every person with Down syndrome has the right to be accepted and valued for who they are, and to be able to participate fully in their community, without exclusion. You can read some great stories from people with Down syndrome here or check out Rachel’s story, the first Australian person with Down syndrome to graduate from university. 

Together we can empower people around the world to advocate for full inclusion in society for people with Down syndrome and for everyone.

What does inclusion mean to you?

4 thoughts on “World Down Syndrome Day

  1. I wish we more inclusive and accepting of difference, when we are not we are cheating ourselves of other’s valuable insights. The lack of diversity and inclusion always surprises me, especially when it occurs in university.

    Liked by 2 people

    • I agree Sharon. It frustrates me at times, but one of the things that I think we are very reluctant to do in Australia, is interrogate and recognise our own inherent biases and the complex relationships between ability, race, gender, class and so on. It’s quite surprising the number of things that I’ve heard people say, which might sound quite reasonable, yet are based on ideas about ableism and “normality.” And so in the end, as you say, we cheat ourselves and have a very narrow society.

      Liked by 1 person

  2. It’s great you’re raising awareness of inclusion, Karen. It can be unmistakable but also quite subtle. There’s that old saying “birds of a feather flock together” but things like not having physical disability access. I recently did a survey from the Australian Council of Churches and it didn’t ask if you had a disability and it could have been a good opportunity for identifying ways disability/chronic health prevents people from attending or being more involved with Church. I’ve experienced exclusion from physically attending Church during covid and I am yet to hear of a Church which holds smaller services for vulnerable people where attendees need to be masked and ideally triple vaxed. Why should we be restricted to online? I’ve tried raising my voice on this one before but didn’t make much if any impact.
    I don’t know whether you or your friend has heard of a musician Phil Davidson. His daughter Georgia has Downs’ Syndrome and he wrote this beautiful song about her: https://www.youtube.com/watch?v=IwhPJS-nk48
    I hope that link works.
    Best wishes,
    Rowena

    Liked by 2 people

    • Thanks Rowena. Yes, I’ve had the same issue here. We’ve not gone to a lot of things because we’ve considered it unsafe for vulnerable people. Dan has a flatmate and friends, all with disabilities, and we’re really conscious of not putting them at risk. We’ve also got family members who literally would die if they got covid. Since QLD has opened its borders I’ve sensed a real cavalier approach to protecting the vulnerable. The responsibility has been put onto the vulnerable, which ends up being self-imposed isolation, and that’s a form of exclusion, especially when no other alternative is being offered. As far as I am aware, all the churches here are open to both vaxed and unvaxed. It can be tricky when being inclusive to some, means being exclusive to others. Thanks so much for sharing your experience Rowena. Glad to hear I’m not the only one after all. Interesting point about that survey – disability is still invisible in so many areas.

      Liked by 2 people

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