The Personal is Political

I always thought Ayelet Waldman, local author and celebrity darling, seemed like a pretty cool woman. She is married to Pulitzer prize winner Michael Chabon, of Kavalier & Clay fame, writes a fun series of mommy-themed mystery novels, has a gentle, self-deprecating sense of humor in interviews, and contributes a lot of time and money to Bay Area charities including my beloved Habitot. So it made my heart sink this morning to see her essay in Salon where she frankly speaks about terminating her second-trimester fetus, who was diagnosed in utero with a "genetic abnormality" that she never names but which clearly is Down Syndrome.

She trots out all the usual justifications - her family isn't prepared to raise a child with a disability, it will take too much time and attention away from her other kids, she doesn't want her son and daughter to be "burdened" with caring for their brother after her death, etc. Of course I can't help but have a visceral, stomach-twisting reaction to this incredibly privleged, wealthy woman whining that she simply didn't have the wherewithal to take on this challenge. I wish she could log on to my online Down Syndrome support group and meet the dozens of working-class, struggling parents, who often live in far-flung rural outposts with little to no community resources - and who STILL manage to lovingly raise happy, healthy children with and without extra chromosomes. If they can do it than surely Waldman, who lives within shouting distance of several world-class universities and hospitals with top-notch services, in one of the most diversity-friendly cities in the country, could handle it with relative ease.

At least she has the guts to admit in a national magazine that she killed her fetus because he wasn't genetically perfect - she actually uses that term and doesn't try to couch it in euphemism or political correctness. She is only doing what an estimated 90% of women do when faced with the same news. Once a diagnosis of Down Syndrome is confirmed, termination is expected and encouraged - it is those of us who choose to give birth to our imperfect, hopelessly compromised babies who are shunned, or at least treated with utter bewilderment. I can't count how many times people approached me after Bug was born to bluntly ask "Didn't you know? Beforehand?" The tacit implication being, of course, why didn't you get tested like everyone else does, so you could have had an abortion before it was too late?" Parents of disabled kids quickly become well-versed in the language of the unspoken, where niceties like "Special kids are only born to very special families" and "God never gives you more than you can handle" really mean "Thank goodness it's you and not me!"

In this age of ubiquitous prenatal testing, having a child with an easily detectable genetic disorder is seen as an embarassing, awkward gaffe. It just isn't done. And all those times I look around my temple, or the neighborhood, or the community at large and wonder where all the other kids like Bug are - statistically speaking, he shouldn't be the only one around - I realize that in many cases their parents made the same choice Waldman made.

It isn't that I am against choice, far from it. In fact whenever I get into a discussion regarding this issue I feel I must present my long-standing pro-choice credentials, which are impeccable. All through high school and well past college I was an active member of NARAL and Students for Choice, I volunteered for Planned Parenthood, I did clinic defense, I joined protest marches, the whole works. I am still as pro-choice as I ever was. My objection is not to the availablitity of safe, legal abortions, but to the widely accepted notion that kids like Bug are, by their very nature, disposable. To me there is a significant moral difference between terminating an unplanned and unwanted pregnancy versus aborting a kicking, rolling, 4 month old fetus that was actively wanted and planned after discovering that it doesn't live up to your fantasy of a perfect baby.

I never want to see abortion become illegal - but I would love to see an end to the ignorance about Down Syndrome that causes people to see no light at the end of the tunnel, save for termination. It is so discouraging to hear that even Harvard-educated Ayelet Waldman believes those offensive old stereotypes, that kids with DS are a horrible, time-consuming burden with no quality of life and no future. It's a tragic cycle - people (including doctors) keep repeating these same damaging untruths, so more babies are aborted as soon as the diagnosis is made, so as a result there are fewer living, breathing people with Down Syndrome who can challenge those outdated images.

I hope Bug will be one who changes people's minds. In a sense it is behind almost everything I do. When I take him to Sunday School or Shabbat services, or the movies or the mall or the park, I hope people will see my happy, adorable little boy completely participating in his community, surrounded by his very devoted family, and realize that raising a child with Downs is not some oppressive life sentence requring "massive diversion of parental attention" (if anything, it is Bug's chromosomally normal sister, the strong-willed, high-needs Bee, who sometimes strains our parental reserves)! In fact Bug is a perfect fit for our family, brings us an untold amount of joy every day, is growing and learning and progressing at an astounding rate, and - bottom line - has a life worth living and a bright future worth striving for.

I have no doubt that Ayelet Waldman's decision was a wrenching, painful experience - by her own account it caused her nightmares and months of depression. Still, it makes my blood boil to imagine her brave, tearful confession to her congregation at Yom Kippur, which was surely followed by sympathetic hugs and hairpats and congratulations on her honesty and courage. How ironic, when she chose the coward's way out. The truly courageous thing would have been to give her son a chance to live.