Rewriting the story of Down syndrome

For many, thanks to deinstitutionalization, education inclusion, and medical treatments, they know a different Down syndrome than others. This new knowledge is rewriting the story of Down syndrome. 

Knowing a different Down syndrome

In 2015, Karen Gaffney spoke at a TEDx conference held in Portland, Oregon. Gaffney happens to have Down syndrome and also happens to be a long distance swimmer, being the only woman with Down syndrome to swim the English Channel as part of a relay team and to cross the width of Lake Tahoe on her own. You can view Gaffney’s TED talk below and at this link.

Gaffney begins her talk telling a story about her 5th-grade teacher. After Gaffney was an adult, her teacher called to tell Karen she needed her. Her teacher had just received a prenatal diagnosis of Down syndrome and, as Gaffney relays, her teacher “knew a different Down syndrome than her doctor.”

This was because she had taught Gaffney as a student and stayed in touch with her. Her doctor, however, it seems, lacked experience with individuals Down syndrome. He therefore held outdated, inaccurate views on what a life with Down syndrome can be like.

Gaffney shares how when she was born a doctor counseled her father about institutionalization. The doctor, no doubt believing he was delivering quality care to a new parent, advised Karen’s dad that she may never be able to tie her shoes or write her name. Gaffney pithily notes that the doctor forgot to mention the English Channel to her father.

Since Gaffney’s talk, many others have had experiences that the physician who spoke to her father or the one who cared for her teacher likely couldn’t imagine. Indeed, not a week goes by that there isn’t a featured story about an individual with Down syndrome surpassing outdated expectations.

Here are just two:

Where Hope Grows

Karen’s talk was in May. In August, a blu-ray and DVD was released of Where Hope Grows, a movie whose supporting actor is David DeSanctis, a young man who happens to have Down syndrome.

Karen’s confident delivery of her talk at TEDx no doubt surprised and impressed many in attendance. Similarly, DeSanctis’ portrayal of a young man who plays a key role in turning the lead character’s life around also exceeded expectations, not the least for the role being DeSanctis’ first time ever acting.

The producer of the film shared a moment, though, when DeSanctis may have given into the doubt so many have of the capabilities of individuals with Down syndrome.

On a cold night, the crew was filming at a minor league baseball stadium in Louisville, Kentucky. It was the first week of filming and the stadium had 500 extras there to see DeSanctis perform. In that moment, DeSanctis admitted to Milan Chakraborty, the film’s producer, and Chris Dowling, the film’s writer/director, that he was overwhelmed and didn’t know if he could do it. Chakraborty shares how they gave DeSanctis a pep talk:

We also told him he had changed our lives and he was going to change the lives and perceptions of everyone in the crowd.

DeSanctis went on to shine that night in his performance, even entertaining the crowd between takes by dancing to the piped in music. Watching his performance in the film shows Chakraborty’s prediction to have proven to be true.

Dear Jillian,

Another instance of exceeding expectations happened on June 27, 2015, Jillian Daugherty’s wedding day. Her father wrote a letter to his daughter about his thoughts on that day. He writes asking her to recall:

Do you remember all the stuff they said you’d never do, Jills? You wouldn’t ride a two-wheeler or play sports. You wouldn’t go to college. You certainly wouldn’t get married.

Yet, there he was waiting as her daughter got ready on her wedding day. Daugherty describes the moment;

I am outside, beneath the window, staring up. We live for moments such as these, when hopes and dreams intersect at a sweet spot in time. When everything we’ve always imagined arrives and assumes a perfect clarity. Bliss is possible. I know this now, standing beneath that window.

With advances in prenatal testing, for those parents receiving a result, beyond acting in a movie or imaging your child with Down syndrome on his or her wedding day, the notion of feeling any bliss is hard to imagine.

A day in the life

Gaffney spoke about the challenge she sees with prenatal testing. While many “know a different Down  syndrome,” unfortunately too many, particularly too many developing, marketing, and administering the testing to expectant parents, do not. This is why, in her talk, Gaffney calls on sharing better, more accurate information about Down syndrome.

And part of that information is imagining what a life can be like with Down syndrome.

Karen’s, David’s, and Jillian’s parents could not have expected they would go on to do all that they have, even besides excelling in open water swimming, or starring in a movie, or standing at the alter with a beloved. Gaffney invites the audience and all listening to appreciate that the story of Down syndrome is being rewritten by, as she says, all these lives that matter regardless of the number of chromosomes.

Gaffney asks whether those watching and listening can imagine the future for those children now being born into this new era for Down syndrome where they are welcomed home to loving families, included in their public schools, and have the opportunity to attend college classes and work in the community.

One final example that may help with this imagining.

Penny Becker is a nine-year old who lives in Connecticut with two younger siblings. Penny recently wrote a column that appeared on ABCNews.com. She writes about a day in her life: how she puts on flip flops when she wakes up, who some of her classmates are that she’ll see that day at school after riding Bus 27, what some of her favorite books are, and her nightly routine. Only after describing this fairly typical day does Penny share at the very end:

I almost forgot to tell you about Down syndrome. My mom and dad thought it was going to be scary because they thought Down syndrome would hurt me and other people. But it actually was not scary and I did not get hurt. I have a great life.

How the story of Down syndrome is being rewritten

If you do take the time to watch Gaffney’s talk, you’ll see how front-and-center “Down syndrome” is. That stands to reason given that that was the focus of her talk. But, if you consider how the story of Down syndrome is being rewritten, particularly as Gaffney invited us to do so by imagining it from a child now growing up with Down syndrome, then Penny’s day-in-the-life column is all the more revealing.

For those now growing up with Down syndrome, the story is being so rewritten, and better told and experienced, that “Down syndrome” is literally the last thing on their mind that they want to tell you about.

With that rewriting, and if parents are given better, accurate, up-to-date information on this new story of Down syndrome, hopefully more and more parents will be able to imagine that they will feel bliss because of their child with Down syndrome.

More information:

I’ve written before about Karen’s accomplishments at this post; she also has a Foundation, which you can learn more about and support at this link.

The website for Where Hope Grows has clips, extras, and links for purchasing the blu-ray/DVD.

Paul Daugherty has written a memoir on raising Jillian, An Uncomplicated Life, which can be purchased here.

Amy Julia Becker, Penny’s mom, is a writer whose most recent book small talk on the lessons learned from her young children was reviewed here and can be purchased at this link.