Living with Down Syndrome

Real Prettiness I am a half-Peruvian photographer from Germany and I am 24 years old. My full name is Linda Dajana Kruger but my artist name is Dai Lyn Power. My intention was to call attention to people living with Down syndrome. I want people to see how beautiful, happy, funny and open they are. The <a href=

The Long Game: Or why cute and happy is not enough
by David Perry

March 21st was World Down Syndrome Day, chosen because 3/21 reflects the three 21st chromosomes that mark the genetic condition Trisomy-21, also known as Down syndrome. It’s a day about awareness and you will, if you’re lucky, see lots and lots of cute pictures of kids and adults with Down syndrome. Here’s a cute picture of my son hugging a stuffed alligator at the zoo. I love cute pictures of kids with Down syndrome.

Cute, right? Do you feel more aware?

You might see people wearing funny mismatched socks, not, I think, because people with DS are funny and mismatched (though I feel there’s an implication here I’m not comfortable with) but as a conversation starter.

I am wearing black socks. They are not funny. They do match. Even more unlikely, they don’t have any holes in them.

When it comes to the cutesy and commercialized elements of the Down syndrome internet, I am a curmudgeon.

My basic argument is this. Cute pictures are nice. They are, however, the low-hanging fruit. They render our children as objects to coo over, and you know what, my son IS cute. Most kids are cute. Cute is what kids do. But the labels of cute and sweet persist past the delicate phases of toddlerhood and infancy, defining even the perceptions of teenagers and adults. What about the moments in which humans, real, complex, three-dimensional humans, are not so cute? What about pain? Violence? Sorrow? Poverty? Rape? Murder? My fear is that because there’s so much emphasis on cute and on children, that cute makes it hard for other stories to emerge.

Cute is the low-hanging fruit. If we in the community employ it, we must do so as a tool to open the door and start the conversation, not as an end to itself. Otherwise, cute just becomes “sweetness porn.” It makes you feel good, but it doesn’t do anything – except perhaps shut out the non-cute. At best, it promotes a nice feeling of passive awareness, because it’s easy for people to be aware of something cute.

But as I’ve said before, I’m playing the long game. I want inclusion (and not same-ness). I want resources. I want justice. I want to change perceptions.

Disability scholars use the phrase “inspiration porn” to describe ways in which people with disabilities are leveraged to inspire others, losing their own agency, losing their wholeness as a complex person, and often sending messages that if you aren’t inspiring as a disabled person, you’re letting the side down. I argue that our focus on cute, sweet, and happy in the Down syndrome community does the same thing.

And so I write about death and rape, I write about violence and enforced compliance, and I question the utility of things that make me feel good about people with Down syndrome and the world. I question the value of letting kids with DS score uncontested touchdowns, even if it makes them happy. I question the significance of voting kids with DS as homecoming kings and queens – yes, it makes everyone happy and helps the typical kids feel good about themselves, but tomorrow are they going to go out and advocate for reinstating respite care for struggling parents of kids with disabilities? Or is it just patting themselves on the back for showing how great they are. I am a cynic; a curmudgeon; a writer about difficult topics – and I grateful to CNN and others for letting me have that surly voice on a national stage.

Again, if you post lots of cute pics and blog or publish heartwarming stories, thank you. You are doing a lot for awareness. I believe in our community and am so privileged to be a part of it. I believe we are all trying our best and trying to make a difference. And again, cute opens the door. But it just can’t stop with that.
David M. Perry is a professor of history at Dominican University. He writes about language, power, and privilege, especially on topics related to parenting, disability, gender, and history. He is a regular columnist for the The Chronicle of Higher Education, and a contributor to CNN.com. He and his wife are doing their best to raise a boy with Down Syndrome and a precocious and hyper-verbal girl.

A New Story For Down Syndrome
By Amy Julia Becker

There’s a video making the Internet rounds. It introduces us to Heath White, a father who didn’t always love his daughter Paisley. Heath reads a letter in which he confesses that before Paisley was born, he urged his wife to have an abortion. Paisley was prenatally diagnosed with Down syndrome, and Heath was devastated by the news. As Heath tells it, he wasn’t really worried about Paisley. He was worried about himself, and about how a daughter with Down syndrome would shatter the image he had of himself, an air force pilot, a marathon runner, a perfect student with a perfect family. His wife refused an abortion, however, and a few years later, Heath describes the way he came not only to accept his daughter but to take great delight in her and to count her as his pride and joy.

Heath White’s story is unusual only in that it has been viewed by nearly one million people. Plenty of memoirs, including my own, relate a similar set of emotions, from grief and despair to acceptance to wonder and joy. On countless blogs and in articles and interviews, I have told the story of our daughter Penny, who was diagnosed with Down syndrome a few hours after her birth. I have described the initial sense that I was drowning and might never come up for air. I have written about the early months of wondering if it might be OK after all. And I have told story after story about the delightful ordinary life of our daughter. She rides the bus to school in the morning. She has play dates and goes to ballet class and started piano lessons last week. She adores the Clementine books and isn’t a big fan of animated movies. She fights with her brother and sister and whines to her mom and dad. And we can’t imagine our life without her in it.

It’s a story worth telling, because our culture still believes what we once did — that Down syndrome is cause for grief. Many of us who have children with Down syndrome want the rest of the world to know that we were mistaken in our initial assumptions and emotions. We want the world to know how much we celebrate our children’s lives. And so we tell the story, from grief to hope, again and again.

But the more common story, even if it doesn’t get told very often, is the one I read in a magazine this summer. This story starts in a similar place, with shock and grief and hopelessness after a prenatal diagnosis of Down syndrome. But it ends differently, because in this story Chloe Ashton chose to terminate her pregnancy. Some studiesshow up to 90 percent of women with a prenatal diagnosis of Down syndrome abort. These stories begin with grief, and many of them also end with grief. Chloe Ashton concludes her essay: “As I sit here today, almost three years later, I pray for those who may be going through this, and I try to forgive myself. I’m not sure if I ever will.”

I wonder if there’s any hope of entering an age with a new story, a story that isn’t as dramatic as Heath White’s or Chloe Ashton’s, a story that doesn’t rely upon an entry point of grief, a story that doesn’t need the tension of transformation.

Over the past 40 years, the social, educational and medical landscape has shifted dramatically for individuals with Down syndrome and their families. Instead of sending children to institutions, parents started to bring their babies with Down syndrome home from the hospital. This familial inclusion led, in time, to the inclusion of children with Down syndrome in schools and places of worship and the workplace. Thanks to legislation like IDEA (The Individuals with Disabilities Education Act) parents gained access to early intervention programs, enabling them to learn how to help their children communicate, gain independence and move around safely. It also led to medical advances and research which, combined with the greater social satisfaction from living in home environments, has caused the life expectancy of people with Down syndrome to double.

Currently researchers are working on a variety of measures to potentially mitigate some of the negative effects of Down syndrome, even as social supports continue to improve the quality of life for children and adults with this condition. All of these advances provide the makings of a counter-narrative to the hopelessness that some parents experience when their child is first diagnosed with Down syndrome.

I have a friend with a cousin with Down syndrome. She tells the story of his birth. The room went silent as the doctor offered his diagnosis, but my friend’s aunt said, “A baby was just born. Why aren’t we celebrating?”

It took me nearly a year to unreservedly celebrate the life that was given to us in our daughter Penny. Seven years later, I am grateful that my grief turned to joy. But I hope our family, along with Heath White’s and thousands of others like us, might be a part of writing a story for parents of children with Down syndrome, a story in which hope replaces grief as the first chapter.

Nico-coat

Telling the sibling – Collecting stories
By David Perry

On Sunday, my daughter and I went out to go grocery shopping while Nico and my wife did things around the house. As we drove by the local high-school, my daughter, 5, said, “If we still live here that will be my highschool someday!”

“That’s right,” I replied, “And you will be able to walk or bike there, or maybe even drive when you are old enough.”

She said, “Or my big brother Nico can drive me! Because he’s going to go there too and he’s older than me, so he’ll be able to drive first.”

The words struck me hard. Nico, of course, has Down syndrome. He may well learn to drive someday, but it’s not very likely that he’ll be driving his sister to school at age 16. This conversation was, to me, a sign that soon I was going to have to talk to Ellie about her brother’s diagnosis. In a few weeks, they start school again, and for the first time will be in the same building. The other kids will talk about “special needs.” Who knows what the other kids will say. Ellie needs to be ready.

It’s not like she doesn’t have a clue. We’ve had the “Nico has to work hard to learn to talk,” conversation, in regards to therapy. But Nico is not medically complex, as these things go, so our lives together have not been permeated with lots and lots of doctor visits and hospitalizations, events that might have forced this conversation earlier. Ellie has never asked, “what’s wrong with Nico,” or “why can’t he really talk yet.” Life with Nico is normal, the only life she’s ever known, and it’s a damn good life. And yet, it’s time. She’s ready.

I’d like to hear from all the other parents who have faced this moment. What did you say? How did it go? Let me know here via email lollardfish@gmail.com.

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