Thursday, February 10, 2005

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.


Blogger exute said...

Outstanding! You've outdone yourself.

You should send it directly to Aylet Waldman- and if you don't, I will. And I know just how to.

8:36 PM  
Blogger Leese said...

thank you for sharing.

i've opted not to have genetic testing/amnio during both my pregnancies because i couldn't see any other reason why i would want to know whether my child had a genetic "defect" other than to give me the option to terminate the pregnancy.

i was afraid that if there was something "wrong" with my child, my coward self would take the easy way out and choose to terminate.

in my case, though, it was optional. but i don't understand why the test is mandatory for older women. i think it gives women unnecessary burden to make a decision, and they make a decision to terminate the life of a child they have not given birth to, seen and touched.

2:17 PM  
Blogger lucidkim said...

I was 33 with my first pregnancy and 36 with my second one. Both times I was encouraged to have an amnio done - I asked my doctor about it. He said "if you find out something is 'wrong' with the baby, will you have an abortion?" I said "no, I'll have my baby no matter what" and he said "then the test is pointless." He would not have encouraged abortion even if I had the test and found out one of my girls had down's (they did not). Until I read your post, I honestly didn't expect most women would. Your baby is your baby, regardless.

Thanks for sharing all of this.


5:12 PM  
Blogger Aimee said...

Bravo! That was brilliantly written. And I agree with exute--you should send a copy of this directly to Ms. Waldman.

4:49 PM  
Blogger Zelda said...

What an incredible post. I saw Gooch's picture of your son on his birthday and I don't think I've ever seen anything more perfect.

That woman deserves her nightmares.

10:45 AM  
Blogger Inanna said...

This is something worth printing out and keeping forever. No one is genetically perfect. Whether its apparent through amnio or not apparent until later in life. Often you hear, "We all have our burdens to bear." Its not our children though, its the idiots around us who have such disregard for "imperfect" human life.

12:13 PM  
Blogger dantobindantobin said...

Wow. Well done.

4:26 PM  
Blogger Melissa said...

Yesher koach! Bug is lucky to have you as his mom.

8:46 AM  
Blogger Jamie said...

I too am pro-choice. But I chose to have my kids before i found out I was pregnant. Yes, I got tested, but it wouldn't have changed anything. I could never terminate a child inside of me.

Plus, maybe I have a different view of down's people, but I generally see them as happy, adjusted people, with a more simple world view. Something most of us could use in our lives.

One of the girls at work has several 'special needs' children in her life, two of them adopted. Since I have cared for one of them as a patient, and gotten to know him, she and I have been able to share much of his joy in this world. I think the world is a much better place with Devon in it.

Same with Bug. Yes, send this letter to Aylet, and the responses, too.

11:10 AM  
Blogger rizlablue said...

*hug* As you said - you're pro-choice. So is Waldman, I guess. Just a pity she didn't learn a bit more about her son.

5:00 AM  
Blogger Craig said...

I am pro-life (albeit not foam-at-the-mouth so), but I wish to applaud your article nonetheless. I am very much pleasantly surprised to see a publically pro-choice person who doesn't see the issue in terms of "abortion is always right because the woman's right to choose trumps everything", like many of the pro choice talking-heads seem to.

You've also piqued my curiosity, and I wish to ask you two questions, if that's alright. Clearly you consider it morally wrong to use abortion as a means to remove oneself from at least one type situation where the consequences of delivering and/or parenting would be significantly more difficult than the alternative. So what I'm curious about is a) under what circumstances do you consider abortion to not be morally wrong? and b) what (would you estimate) is the percentage of abortions that meet this criteria?

Answers here, or by e-mail to (craigkas)at(myway)dot(com), are fine, or if you simply decline to answer - you're not obligated to, after all - that's fine too.

7:32 AM  
Blogger Alison said...

Thank you for an amazing piece of writing. I have a son with multiple special needs, and have had all those "didn't you know beforehand" questions thrown at me. No I didn't - his is not a condition that could be detected by any antenatal testing, and I would never have aborted anyway. When I became pregnant with my daughter, I refused all the usual tests - I knew I wouldn't abort anyway, so they seemed pointless. The worst comment I got was from my son's neurologist, who on being told that I was 28 weeks pregnant with my daughter, said very gloomily, "Well, it's too late to do anything now anyway". Horrible man, thank God he's retired now.
I love reading about both your kids - they sound like lovely little characters. And I wouldn't change anything - I've met some wonderful people in the special needs world since I had my son, and he, of course, is the most wonderful of all.

4:47 AM  
Blogger GrannyGrump said...

Ironic, isn't it, that for all the talk about "celebrating diversity," it's expected that you'll abort a baby who is known to be different.

I used to work in an institution for people with severe developmental disabilities. They were among the most amazing, resourceful people I've ever met. They weren't "defective;" they just had different challenges and different ways of approaching life. The world lost a lot by shutting them away. It loses even more by weeding folks like them out in the womb before they even see the light of day.

4:39 PM  
Blogger Emily said...

Here's the Amazon link to Expecting Adam, a book about parents who got a lot of similar comments in their academic environment because they didn't abort their Down Syndrome baby. It's a great book.

1:30 PM  
Blogger Z said...

I am standing over here applauding you - can you see me???? All mothers of "children who are not developing typically" are applauding you. I just can't find words to express myself right now.

8:35 AM  
Blogger Z said...

Of course I DO want to know if this was ever sent to Ayelet by you or by Exute...I am dying to know!

8:35 AM  
Anonymous Anonymous said...

You have written an essay of your beliefs about what rights women should and should not have. This woman has every right to terminate her pregnancy for the reasons of her chosing, just as you have the right to have the baby of your choosing. If you truly are 'pro-choice' then you cannot expect to choose what circumstances you are pro-choice under and ridicule women for the ones you do not feel appropriate. No matter how wealthy or poor, educated or not, it is (presently) every woman's right to choose. It is not up to you to decide what another woman or family feels they can or cannot "tackle." Hats off to you for your abilities to educate and nurture your son, but shame on you for being just as closed minded in criticizing another woman who has chosen not to.

8:53 PM  

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