A few years back, I read an article in the New York Times Magazine about a "wrongful birth" lawsuit. A woman sued her doctors after her child was born with severe disabilities because she would have aborted had her daughter's genetic abnormalities been detected in utero. The writer of the article sums up the problem well:
"... ethics and standards are being hashed out in the courts, in one lawsuit after another. And what those cases are exposing is the relatively new belief that we should have a right to choose which babies come into the world. This belief is built upon two assumptions, both of which have emerged in the past 40 years. The first is the assumption that if we choose to take advantage of contemporary technology, major flaws in our fetus's health will be detected before birth. The second assumption, more controversial, is that we will be able to do something — namely, end the pregnancy — if those flaws suggest a parenting project we would rather not undertake."I commend the entire (long) article to you, but I bring it up here because I recently learned of a Massachusetts woman who won a similar lawsuit when she sued her doctors in relation to the birth of her daughter. Louise Kinross, editor of Bloom: Parenting Kids with Disabilities, asked me to write a response to the case. I will post my response here, but I also encourage you to visit Bloom–it's a wonderful site that treats any number of issues surrounding disability with honesty and grace. Use the comment section to add your own thoughts.
Dear Mrs. Zhuang,
A friend sent me the Boston Globe Article about your recent lawsuit: "A superior court judge approved a $7 million settlement yesterday in a lawsuit brought by a Shrewsbury woman against four medical professionals at a Worcester hospital, whom she accused of failing to offer or explain tests that could have prompted her to have an abortion rather than carry her now-disabled child to term, her lawyer said yesterday."
When I read it, I felt a tightness in my chest. I felt defensive of our daughter, who has disabilities caused by Down syndrome. I felt angry. And I felt sad. The only thing I wrote to my friend in response to the article was, "Ugh."
I have two competing thoughts when I hear about your situation. One is that every human life is valuable and meaningful, no matter the form it takes, no matter the genetic problems involved, no matter the degree of disability. The other is that I should feel empathy and even love towards you, that I should try to understand. I guess the second point is really the same as the first. Just as I believe your daughter has intrinsic value, so too do I believe that you are a person who deserves my respect, my compassion.
Maybe you were frightened by the conversations we have had recently in this country about health care. Maybe you thought this lawsuit was the only way to ensure that you would be able to care for Annie in years to come. I imagine you are very sad about some aspect of your daughter's life. I don't know if she is experiencing pain and you desperately want that pain to go away. I don't know whether she can walk or talk or smile. I don't know if she keeps you up at night. I don't know if she calls you Mama. I don't know if you feel worn down by the care she needs. I don't know. But I have to imagine that some of those things are true and as you look ahead to decades together, you not only feel frightened and overwhelmed by what those years will require of you, but angry and saddened by what those years may require of your daughter. I have to imagine that you love her, as only a mother can.
And yet.
A spokesman for the hospital said, "Events of this nature impact patients, their families, and the providers of care, and we strive to learn from them.'' Your decision to sue sends ripples that reach beyond your personal situation. Doctors and nurses and genetic counselors, fearful, might be more inclined to push for prenatal genetic testing and even abortion of fetuses. Your story may incline individuals who read about the case to think that children with disabilities aren't wanted by their parents, that children with disabilities are a categorical burden on society, and that genetic testing offers control over the outcome of individual lives. Your individual decision to sue has consequences for the entire community.
Of course, the impact goes both ways. A child with a disability requires a community of care. I can only imagine your situation based upon what I read in the paper, but I wonder if you feel isolated. I know you are from China and English is not your first language. I wish I could say that everyone in America wants to offer support and inclusion to children and adults with disabilities. Unfortunately, it's not true. But there are many people in this country who care deeply about families like yours. There are many who would love to get to know Annie. And so I wonder whether those of us who, like you, have children with disabilities, might be able to welcome you into our community, whether we might be able to offer support in the hard times, whether we might be able to share your joys and offer some comfort in your sorrows.
I wish you hadn't felt the need to sue over the birth of your daughter. And I hope—despite your pain and sadness—you will find peace and unexpected joy in her life.
