Every year, Penny and I visit the Down Syndrome Clinic at Mass General Hospital. (Here’s a behind-the-scenes look(!) at one of our recent visits to the Clinic.) Penny is an adult now, so this year we spent two hours filling out ALL the forms so they would appear in her name instead of mine. Details included her head circumference at birth (I can’t remember) and APGAR score (8) and whether she’s had her hemoglobin tested lately (I’m pretty sure the answer is yes). But my favorite question of all came when Penny said, “I think you’re supposed to answer this one,” and pointed toward the screen. The prompt read:
“What makes you smile about this person?”
I mean, what a wonderful way to communicate to Penny as a patient and to us as a family that this doctor and his team care about us. What a beautiful gesture toward the fullness of Penny’s life, with the assumption that she brings a smile to the faces of the people around her. I took a long time to answer, not because I couldn’t come up with something but because I can come up with so many things. I said, “Your honesty and your sense of humor,” but those felt like paltry efforts to say, “The whole of you. YOU make me smile, over and over again.”
We headed to the clinic itself, and Penny took the lead in articulating the things that matter most to her right now—healthy eating, initiating conversation, and self-care. We left with a list of things to do—I really drag my feet on calling the audiologist every year, and Penny really doesn’t want orthotics in her shoes even if she desperately needs them. But even more than tasks, we left with a sense that her life matters, to this team of people and to the communities she gets to be a part of.
When Penny was first born, we saw a genetic counselor who told me that most doctors had high IQs and such tremendous ambition that they couldn’t understand how any parent could welcome a child with Down syndrome. I learned about the medical model of disability, in which disability is seen primarily as a problem to be fixed, and I assumed most doctors saw my daughter as an unfixable problem. The history of medicine in the United States also tells a story of disability as a problem to be fixed, and, if not fixed, then pushed to the margins through institutionalization and exclusion. In some states, it was legal throughout most of the 20th century to deny medical care to individuals with disabilities. In 1982, a court in Indiana declared that the parents of a child with Down syndrome in need of a simple surgery could deny that surgery and allow their child to die. In more recent years, countless women have reported negative diagnosis experiences with doctors who see Down syndrome and other genetic conditions only as tragedies.2 In light of the history, I thought the medical establishment was against her, against us.
But twenty years of life with Penny has shown me that the majority of health care workers we’ve met—from the woman taking her blood pressure to the man drawing blood to the doctors and nurses who care for her physical needs—the majority of them are there as a part of a team of support and care. We are so grateful to know them and to benefit from the work they do. Yes, they want to fix problems if they can. And no, they do not see her as an unfixable problem.
Our nation is still in the process of writing the story of disability. The story of disability as a problem is still out there. But the doctors and nurses and therapists (and all sorts of other people) in Penny’s life have convinced me that they deserve our trust and our gratitude. They are helping to write a story where her medical needs matter, and where the reasons she makes other people smile matter even more.
Have you had a similar moment with medical professionals that made you feel seen or respected as a person or family, not just as a diagnosis? I’d love to hear your story. And if your experience has been different, I’d love to hear that too. Please leave a comment!
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