Monday, March 21, 2016

What George Did - World Down Syndrome Day

Image description: the number 21 drawn so the 2 is in red with orange polka dots and the one is blue with pink polka dots.
He was the only man there. I saw him come in, look nervously around, and then take a seat, in the far corner, by himself. Others came in, all women, some in pairs, some in groups and others, like him, alone. I was getting myself ready, dealing with the nervousness that natural to public speaking, reminding myself that I love presenting to parents, reminding myself that it mattered that we were all here, today, on a Saturday morning.

It was time to begin.

Parents make a great audience. They come to a presentation to learn, motivated by the love of their child, they arrive ready. They were a lively group, ready to listen, prepared with questions and quick to laughter. By break I was tired, a good tired, from a mental workout. I wandered out to the lobby for some fresh air. There, sitting in a chair, was the man who sat in the back corner of the room.

We fell in to chatting. He told me that he was the father of a young boy with Down Syndrome. "Speaking of pride," he said clearly reflecting something I had said in the morning session, "let me tell you the story of my boy." He then went on and told me that he worked in a company that had hired a person with a disability. The employees were very worried at the direction the company was taking by doing this but when George arrived, a man with Down Syndrome, and took his job, all that worry just drifted away. "Oh, one or two of the staff were assholes but they were dealt with swiftly." Over time George just became another of the staff, he did his job, did it well and he added to the culture of the place.

At the company picnic, a few years later, George shocked everyone by bringing his girlfriend and then proposing to her at the picnic. It turned the whole thing into a wonderful celebration. George was more than happy, he was delirious when his girlfriend became his fiance. It was a few days later that he and his wife received the news that their baby, carried to term, would have Down Syndrome. As the doctor pressed them to schedule an abortion, his wife turned to him and said, "What if our baby is George? He has a job. He is in love. He has a full life. What if our baby is George?"

They have a wonderful son, with Down Syndrome.

Many of us with disabilities know that just by living our lives, out loud, out proud, in the most profound political statement we make. I am a one man disability pride march. Just being where people don't expect me to be. Just doing what people don't expect me to be doing. Just participating where people don't expect me to have a voice. Just doing those things is enough.

I wonder if George knew that his life was his protest against bigotry and prejudice. I wonder if George knew that going to work was a political act of defiance. I wonder if George knew that he would inspire people to think differently simply because he lived life without shame.

People with Down Syndrome, by the very nature of having a visible disability, have the unique opportunity to live in ways that challenge preconceptions. That their work and their passions will be a direct confrontation to the tyranny of low expectations. That their lives will stand in stark contrast to the predictions, by doctors and geneticists and bigots all, of lives lived without worth and value.

I hereby, then, salute, today on World Down Syndrome Day, 21 people with Down Syndrome whose lives are lived fully and well, whose contributions are important and valuable, and whose achievements make us all proud. I should say it took me less than 5 minutes to make this list of 21 and I had to stop. There were so many more. In this list are artists, actors, potters, painters, politicians and writers. In this list are people living loud and proud, people making a difference in their world because of their work and at the same time making a difference in the world because of who they are as they do the work they do.

Rolling Around In My Head's
World Down Syndrome Day 
List of 21

Sandra Jensen
Michael Gannon
Gretchen Josephson
Sarah Gordy
Lauren Potter
Angela Bachiller
Tim Harris
Tommy Jessop
Chris Burke
Megan McCormick
Raymond Hu
Christian Royal
Pablo Pineda
Edward Barbanelle
Jamie Brewer
Bernadette Resha
Michael Johnson
Emmanuel Bishop
Sujeet Desai
Melissa Reilly
Jessie Huggett

I would also like to salute those with Down Syndrome whose names we will never know but whose lives are equally valuable and whose presence in the lives of others make a contribution. I personally know several people with Down Syndrome who communicate in non-traditional ways, who work hard to accomplish the skills they need to live daily, who have support throughout their days, and each of these are equally valuable. I believe, as I said, that having Down Syndrome and living well is a demonstration of how the personal becomes the political. I remember being with someone with Down Syndrome, in a food court, and providing support to her as she ate her meal. I remember the looks, the disgust, on the faces of others. And then, magically, when the meal was over, her looking up, looking around and showing delight in seeing a friend approaching at a distance. That moment of delight, changed her in the eyes of those around her ... joy, no matter who experiences it, is still joy. And that moment of joy lit up the darkness in the eyes of those who saw in her, nothing.




Changes the world.  


Alicia Butcher Ehrhardt said...

How incredibly insensitive of the doctor to recommend abortion - just because the baby had the same 'problem' as its parents.

They should have asked that - what are this doctor's beliefs - before subjecting themselves to this possibility. They should not have faced this kind of unbelievable lack of support during their happy pregnancy.

Their child is already a 'George' - simply by having these parents.

Andrea Shettle, MSW said...

To clarify, my understanding from what I read in Dave's post is that the parents did not themselves have Down Syndrome. Rather, the father had a co-worker--"George"--who did have Down Syndrome. The doctor might not have realized this.

It is clear, though, that the doctor had a bias against Down Syndrome and probably believed in a lot of misinformation about Down Syndrome. And, yes, parents should not have to deal with doctors assuming that they necessarily would want to abort a child who might have Down Syndrome.

northlighthero said...

Recently I read a lovely essay describing a "normal" pregnancy in the same tone that doctors routinely use when Down Syndrome or another testable abnormality is detected in utero.

It was hysterically funny ... and it was chilling.

What would happen if, instead of all the gloom and doom, the doctor just presented the actual facts: "it looks like this baby has the Y-chromosome, Down syndrome, and is at about normal weight for X weeks of pregnancy" and let the parents ask questions?