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What I’ve Learned This Month About Down Syndrome, Cures, Health, and Family

What I’ve Learned This Month About Down Syndrome, Cures, Health, and Family

Last updated on: October 31, 2013 at 9:55 am by Amy Julia Becker

What I’ve Learned This Month About Down Syndrome, Cures, Health, and Family 2013-10-31T09:55:08-04:00 Amy Julia Becker

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For the past month, in honor of Down Syndrome Awareness Month, I’ve invited a host of people–doctors, professors, mothers, fathers, and individuals with Down syndrome–to address a question that has come up across various news outlets in recent months: Should we try to cure Down syndrome? I began with my own concerns about the research related to this topic and, even more so, the way people with Down syndrome are portrayed within the media. I, like Alison Piepmeier, was suspicious of the idea that curing Down syndrome was desirable. And yet I knew that plenty of parents of children with Down syndrome support and even embrace this research as a source of hope for their children. I wanted to listen to their perspectives and learn from them.

I’m still ambivalent at best about the possibility of mitigating the effects of Down syndrome through genetic or drug-based therapy. I’m concerned about side effects, unforeseen consequences for individuals and for our culture, and about an ethos that values productivity and IQ above community and care. I don’t just accept Penny as she is, I love her as she is, and many other parents attest to a similar perspective on their children. The two adults with Down syndrome who contributed to this series ultimately said they wouldn’t change who they are, challenges or benefits. And yet I can now say I support Leticia Velasquez in her earnest desire to improve her daughter’s Christina’s quality of life. I support the parents who long for their children to be able to share memories and live safely and enjoy learning, and so I support the research that might one day lead to these outcomes.

A few nights back, Penny and I were in the kitchen. She stood by the kitchen island, practicing ballet moves, and she was singing “Onomatopoeia, whee! Onomatopoeia, bang!” She didn’t actually know what onomatopoeia meant, but she had learned the song in school that day and we were able to talk about its meaning and come up with other words. Later that night, I was cajoling her to come to my side so we could start the next chapter of Prince Capsian. She looked up at me, crawling on her hands and knees across the floor, and she said, “I’m coming, Mom. I’m just coming slowly.” That sums up Penny’s life, and the slow and deliberate pace she pursues has been a blessing for me. I wouldn’t change her if I could, and I don’t imagine she sees herself in need of curing either.

At the end of the day, my energy goes towards making this world a place that welcomes the kids and adults who are coming, who want to be included, who have great contributions to offer, those who are coming slowly.

To conclude this month, I’ve listed all the posts below, with a brief summary of each. For those of you who’ve been following along (faithfully or intermittently), I’d love to know whether this series has changed your perspective at all, and if so, in what way?

October blog posts on “Curing” Down Syndrome”

Should We Try to Cure Down Syndrome? by Amy Julia Becker

Why is the quest for a cure so problematic?

The Damaging Language of “Cure” and Down Syndrome by Rachel Adams

Author Rachel Adams challenges her readers to stop asking the question, “Should Down Syndrome be cured?” and rather focus on improving the lives of the individuals with this genetic condition.

Down Syndrome: Towards A New Research Era And Effective Therapies by Dr. Faycal Guedj

A clinical and personal approach to the advances made in the latest Down Syndrome treatments.

On the Possibility of Curing Down Syndrome by Lisa Morguess

A mother to a child with Down Syndrome examines the root of the question at hand.

Down Syndrome Research, Hope for My Daughter by Leticia Velasquez

A mother embraces medical breakthroughs as a glimmer of hope for her eleven year old daughter with Down Syndrome.

Reversing Down syndrome and the Golden Rule by Mark W. Leach

Considering the potential treatment of Down Syndrome and asking the question based on the “Universality Principle:” “if it’s so good, would you do it to yourself?”

Why Down Syndrome Matters to You by Amy Julia Becker

Considering the positive and negative effects a potential “cure” for Down Syndrome could have on our culture as well as the Down Syndrome community.

A Few Thoughts on the Bioethics of Space Cowboys by David Zahl

This blogger and minister offers another “dimension” of the question, “Should Down Syndrome be cured?” by discussing bioethics and science fiction.

When Science Fiction Becomes Science Fact: Reflections on Flowers for Algernon and my Daughter by Margaret (Gary) Bender

One mother reflects on her daughter with Down Syndrome and Flowers for Algernon as she considers a potential “cure”: “Does anyone have the right to change who people are intrinsically, to change a person’s identity and identification?”

Sam Was a Gift to Us: A father reflects on medical advances, trisomy 18, and human fragility by Aaron D. Cobb

A father reflects on his son’s short life and is not convinced that the latest medical advances include the answer to his unfulfilled hopes.

None the Same as the Other: Ethical Reflections on Eradicating Down Syndrome by Dr. Johannes Reinders

Dr. Reinders shares why he believes the answer to the “cure” question is focusing on medical support for families with Down Syndrome that will help them enjoy life rather than eradicating the genetic condition all together.

Missing Adam: One Mother Reflects Upon Her Son with Down Syndrome by Stephanie Brock

One mother challenges individuals and their way of thinking as she poses a deeper question to the “cure” debate.

Loving My Challenging Life with Down syndrome by Tryn Miller

An insider’s perspective of a potential “cure” from an individual who has Down Syndrome.

My Suspicions About “Curing” Down Syndrome by Alison Piepmeier

A mother’s intuition on the progress being made as researchers try to find a “cure” for Down Syndrome. Instead of “curing” the condition, she embraces it: “Disability is an embraceable form of human diversity.”

What Does it Mean to Be Healthy? John Swinton on Down Syndrome, Shalom, and Medicine by John Swinton

What if health is not the absence of illness but the presence of God? Or the presence of an inclusive and loving community?

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