Sunday, March 22, 2015

World Down Syndrome Day: In A Different Key

(Photo Description: Skyline of the city of Toronto, downtown, at night. The CN tower is lit up in yellow and blue, in celebration of World Down Syndrome Day.)

In the wake of World Down Syndrome Day, a day designed to celebrate achievements and to challenge stereotypes, we need to examine the inclusitivity of the day. We need to ask whether those of us who believe in inclusion, who stand firm that 'all means all', have practiced the ancient art of exclusion.

I read a lot of the blogs and articles that came out about people with Down Syndrome. I was inspired, as was the intention of the writers, by the stories I heard and the amazing accomplishments of people with Down Syndrome. The list of those who have done amazing things, and who have lived such full lives, is long. Shona Robertson from Australia, Sarah Gordy from the United Kingdom, Michael Gannon from Ireland, Mia Farah from Lebanon, Shoko Kanazawa from Japan, Raymond Hu from the United States and Stephanie Boghen and Julian Escallon from Canada, comprise a growing number of people with Down Syndrome whose achievements are noteworthy in and of themselves. That last sentence was difficult to write, not because it was hard to find names to include, but because it was hard to select names to include - the accomplishments of many are rich and varied.

Many of the blogs that wrote had inspiring stories of those who have gone beyond the predictions of Doctors, the expectations of teachers, and the prejudices of society. These are important and powerful stories and they are stories that need to be told.

But. We all know that these are not the only stories that need telling. We all know that success isn't always bright and shiny and tinged with celebrity. We know this because most of us live quiet lives filled with more ordinary accomplishments. Most of us are celebrated, not by the press or by the world, but by a smaller more intimate group: those who know and love us.

I met Lyddia many, many years ago, when I'd first become a consultant. She was older than me, by about 15 years, she lived in a group home, she went to a day program and she visited her sister and her elderly father regularly. When the referral was first made for a behaviour therapist, it came from the family, not the agency who supported her. I met her father and sister first.

In chatting I asked about the spelling of Lyddia's name, I had wondered if the secretary had typed it wrongly on the form. Her dad smiled and said that when they were naming their daughter, her mother who had been shaken with the diagnosis of Down Syndrome, decided on the name after learning about the extra chromosome. She decided to give her daughter an extra letter in her name - to say to the world YES WE KNOW!

Their concern was the Lyddia was too passive and they wanted her to have a voice that was heard. She only had a few words, but she could say 'yes' and 'no' ... "that's all you need to be able to say in order to take control of your life," said her sisters. But it only works if people ask the right kind of questions. 'What movie do you want to go to?' doesn't work, they should know that, we keep telling them."

So the referral was for Lyddia to use her voice effectively and for that to happen, the staff had to listen effectively. Then I met Lyddia. She was a short, plump woman, who was, by nature, very quiet. She would look at me, when I asked her something, but as soon as she answered her question, she would look down and away. She understood what the goals were, she agreed to work with me, and we did.

Her staff loved working with her, they saw her as a quiet, gentle and very wise woman. They realized that they too often communicated in a rush, and forgot about framing the questions in such a way that Lyddia could answer. As such, I wasn't involved for long.

I enjoyed working with Lyddia, and, yes, I came to see her wisdom when we were together. She had, when she focused on a task that she enjoyed, the most beautiful and peaceful face I have ever seen.

I remember a conversation with Lyddia's sister. She said that she hated when professionals used terms like 'high grade' and 'low grade' or 'high functioning' or 'low functioning.' She said, 'It's not just because they consider my sister on the 'low end' but it's because those terms miss the point. Lyddia has all the skills necessary to just be Lyddia. She lives her life well. She lives her life kindly. She brings herself to every encounter. She brings her presence into every room. How do you rank those things?"

There is no link to Lyddia's name.

There is no article about Lyddia's life.

Lyddia lived her life receiving supports, going to a day program and later, much later, working part time in a pre-school helping out with the kids. She lived an ordinary life, with ordinary accomplishments. Her achievements are real. But they don't call attention to themselves. But they need not be ignored because of that fact.

Many people with Down Syndrome will live quiet lives filled with everyday accomplishments. Many will need help to live their lives for their whole lives. Many will have goals that reach for the stars that hang low in the sky. But, remember, they are stars still.

Some parents I've spoken to feel excluded from the celebrations of World Down Syndrome Day because they do no see their child represented in the 'You Can Do Anything' attitude or the 'If I can do it, you can do it,' mantra of self advocate speakers. They worry that in the rush to the front of the stage to celebrate those with exceptional accomplishments, the quiet accomplishments, accomplishments that come with struggle, and tears, and love, and patience will be diminished. They worry that their children are the 'embaressment' of the movement. They may not have ever been in the back wards of an institution but exclusion from the conversation puts people in linguistic back wards, hidden behind the conversations and removed from discussion.

Everyone needs a seat at the table.

And everyone needs a chance to communicate.

All means All.

Or as was once powerfully said to me, All means Even You.


Glee said...


Mrrrien said...

The real celebration being the chance to be what you are as a right. Great post Dave, Lyydia and her family sound greAt.

carriejoy said...

this was just lovely, lovely, lovely!!

Cheryl Harnett Hynes - Strawprincess said...




One of the things we wanted to capture in re-branding the CDSS was true inclusiveness.

I hope we captured it with "Celebrate being!"

Accomplishments do not define our humanity.

Thank you, Dave. Again.

Karen said...

I am beginning to understand that gentle influence can be more effective than world power. And I worry too about the message we are sending to our children about their worth as individuals. After all, in the words of Will Rogers, "We can't all be heroes, because somebody has to sit on the curb and clap as they go by."

Tara said...

Well said! I remember hoping (planning, pushing, strategizing) early in our journey that my son would be a Ds star. I smile at that now. Six years later, I just want him to be the best Eon he can be!

Blog editor said...

Spot on! We acknowledged the day, but didn't get to a World Down Syndrome Day event because my son was more interested in doing the regular things that he had planned for *his* Saturday ... being himself.

Amy JD Hernandez said...

Yes! Exactly. Thank you! As usual, you get it!

Tricia said...

Thank you. Thank you so much. This means the world to me.

JustMe said...

That was lovely. And yes Lyddia is included in this celebration as far as I am concerned, her life is full of just being Lyddia. My granddaughter's accomplishments will, I think, be quiet as well, but they will be hers. She most likely won't make a billboard, or an advertising or modelling campaign. Just looking for a life well lived, her own, quiet as it may be. Thanks for sharing Lyddia's story.

Anonymous said...

"But. We all know that these are not the only stories that need telling. We all know that success isn't always bright and shiny and tinged with celebrity. We know this because most of us live quiet lives filled with more ordinary accomplishments. Most of us are celebrated, not by the press or by the world, but by a smaller more intimate group: those who know and love us.'
So very well said!!