What I've Learned This Month About Down Syndrome, Cures, Health, and FamilyA summary of the posts this past month in honor of Down Syndrome Awareness Month addressing the question "Should we try to cure Down syndrome?"Amy Julia Becker
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?
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?"
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.
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."