A few months after our daughter Penny was born with Down syndrome, a friend of mine lamented the fact that Penny’s diagnosis would narrow my field of interest and influence. “I want you to be able to write and talk about more than Down syndrome,” she said.
I agreed. I wasn’t particularly interested in becoming a disability-rights advocate. I wanted to be able to write for a broad audience about a broad array of topics. I didn’t want to be limited by my daughter, and I didn’t want to be segregated because of her disability.
As it turns out, on one level, my friend was right. I know more about Down syndrome than I ever expected to know. For a time, I lived a more “limited” life than my other friends with newborns due to the number of doctor visits and therapy appointments Penny needed in the first few years of her life.
But on another level, my friend (and I) was wrong. Four years in, I can say that having a daughter with Down syndrome has expanded my world far more than it has limited it. I’ve written about this before, so I won’t go into all the details (see, for instance, “My Sister’s Name is Doha“), but I do want to share a few of the stories I would never have noticed were it not for Penny’s presence in our life:
First, an article: “French Religious Community Welcomes Girls with Down Syndrome,” and a video clip of the order, in which a tiny Catholic community in France exists in order to support the vocation of a group of women with Down syndrome.
Second, another friend told me about an interview she had heard with the principal at Columbine High School on the eleventh anniversary of the killings there. He was asked, “What have you seen change at your school, and how have you seen the healing continue?” (he was principal at the time of the shootings). He talked about a student body that is more compassionate. His response included a quick reference to the fact that their student body’s Prom King and Queen both have Down syndrome.
A final, more sobering story, and another one I would not have had eyes to see were it not for Penny’s presence in my life. The Miami Herald recently reported, “Sarasota doctor’s license revoked for aborting the wrong fetus.” A woman who was carrying twins, one with Down syndrome (and a possible heart defect), asked for a “selective reduction.” Which is to say, she wanted to abort the baby with Down syndrome and keep the other twin in her womb. The doctor aborted the “wrong” baby, that is, the baby without Down syndrome. Ultimately, the woman had another abortion.
Thinking about Down syndrome, and about disability in general, has expanded and enriched my understanding of what it means to be human. In the first two stories I mentioned, eyes have been opened to a group of people who would otherwise be invisible. Here, individuals with disabilities have been placed in the center of a community rather than on the periphery. And changing the center changes everything. Those of us without disabilities can see men and women with Down syndrome (and cerebral palsy and William’s Syndrome and autism and on down the list) as a part of who we are. We can understand more of our own humanity when we find the image of God in the “other.” Having a daughter with Down syndrome has enriched and expanded my life. I’m grateful for all the ways she has opened my eyes.
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