Tuesday, May 17, 2011

A letter to Mrs. Zhuang

Many of you read the news last week that Ran Zhuang of Boston was awarded a $7 million settlement because her daughter was born with a genetic disorder. Zhuang says she would have aborted the child, who is now 3, if she'd been offered prenatal testing. I asked Amy Julia Becker (above with daughter Penny, who has Down syndrome),  to respond, and she did, with the following letter to Mrs. Zhuang.

Let us know what you think! Louise

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.

Amy Julia Becker blogs at Thin Places, where she writes about faith, family and disability.


That's so upsetting to me too. I hate that it devalues our children and others with disability. My daughter has a genetic disability and needs lots of extra help with everything but is so loved and enjoys life as much as any other 6 year old. I believe the world is a better place because she is here and I know my life is better with my girl. I don't understand this mothers decisions to sue but I 'm sure there is more to this story.

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This is a world gone mad. I don't think of it in any other way.

I have preferred to not pass judgment on people who choose to abort a disabled fetus. It is a private choice. However...this court decision, ever so public, is dangerous in the extreme. You know where this is going, don't you, Louise. The tables will be turned. Prenatal testing will become mandatory to protect against lawsuits. Parents who choose NOT to abort will be denied services to their disabled children because of that choice. I can see the statute now: "In cases where disability was ascertained and preventable, the state shall not be responsible for long term assistance to the parents of the disabled individual." We.are.so.screwed.

This is just another symptom of a society that feels if everything does not work out perfectly it is the fault of someone else. I pray for the little girl. I hope she never learns of her mother's lawsuit.

Why oh why can people not just accept that sometimes sh*t happens? That's what I feel about my situation. It's no ones fault, not mine, not my husband's, not the Doctors, No one. This is just what happened because sometimes the biggest pile of cr*p will land at your door. What is important is how you deal with it, not who you can find to sue.

Julia, we all love our children, but the reality is that there is simply not a support structure in place now, or for the future of children with disabilities.

This is so sad. Without justifying her actions, I think this mom was only thinking about the implications for her family and her daughter financially, and not the bigger picture of what a lawsuit might mean for others. While I read this letter, I kept thinking of the book "Handle with Care" by Jody Picoult, in which a mother of a child with osteogenisis imperfecta (brittle bone syndrome),launches a lawsuit against her OB GYN for "wrongful birth" stating that had she been offered available prenatal testing, she would have terminated the pregnancy. She loved her daughter, but wanted to ensure that she was getting her child the best care possible to meet her complex needs. I hope that this was the case in this real life example...

I think its a little unfair to judge this woman's decision; as Amy Julia said, there are so many things we DON'T know about this case. Judgment comes across as preachy and puts this woman down. I would rather see a letter reaching out to this woman and asking her questions, instead of making statements that will automatically put her on the defensive. My two cents.

No, it's not unfair to judge her decision; it was calculated and she has told the world that her daughter shouldn't have been born and that her own mother doesn't want her as she is. For shame. Enough of the mollycoddling. I don't care if she feels defensive; maybe she ought to. Enough said.

Ridiculous couple, ridiculous case, from a Chinese' mind. However, I have to remind everyone that the couple are not the ones to blame, it is the jury and the judge who ruled that the couple should win. Stupid judge.

The air of judgment on this blog is palpable. While you guys are indignantly claiming Mrs Zhuang is not "considering the wider social implications" of her lawsuit, all of you are only thinking of your feelings, your family, and your children as well. Maybe you should all look into the living conditions of new immigrants. For a family like Mrs. Zhuang's, they are working low-paying jobs despite high education in their home countries, have little property and almost no support of extended families since they are all at home, plus various difficulties with new culture and language. So what if the only way out that they can see is to sue for their daughter's future upkeep? If you guys are well-off enough to hang around blogs, then start your own organization to spread awareness and offer support instead of attacking a family that has been through tumultuous times. You are no different from the vegans who get offended at people eating meat, or the "pro-lifers" that get offended that people who abort, or certain deaf parents who would not let their kids receive a cochlear implant. Raising special needs children, while admirable, is not an honour badge you can wear that gives you a pass to judge others. You are entitled to your personal choice while they are to theirs. Mrs. Zhuang's stance that she does not want a disabled child is unique to her circumstance, has nothing to do with you, and does not take away value from your child. Stop being offended and start to have more understanding and compassion.

I met with a group of moms with disabled children like myself. It was sad to learn that for many of these moms, in their culture there is a strong blame placed on the mother as being responsible in having a "less than normal" child. In all cases it was the mother who was blamed. so for these moms, there is a huge amount of guilt put on them.
I suspect that, by suing the doctors, it has in some way alleviated some sense of the guilt, as the mother would then convince herself that she wouldn't be responsible for bringing into the world a "less than perfect child" as she would have aborted the child instead. Unfortunately the shame brought onto these families by their culture is a very strong one. I am thankful that I don't have this sense of guilt or shame in my own culture. It is a difficult cross to bear.