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Life is Complicated – 4: The Wolf in Sheep’s Clothing

Wolf in Sheeps Clothing Milo Winter 1919

We began this thread in the aftermath of the Indiana State Legislature’s decision to remove disability in the offspring as a legal reason for termination of pregnancy Go here to read the full text of the legislation).

I asked readers for their opinion of what they would do if they were a doctor practicing in Indiana. This proved to be an overwhelming or unanswerable question. (In any case, I got no answers!). Then I rephrased the question: If you found yourself or your partner pregnant and the fetus had a genetic disorder, and you were planning to discuss the issue with your doctor, how would you like your doctor to treat you? My hope was that wording the question this way would make it more accessible – since everyone has been a patient at one time or another, and we all have expectations of how we’d like to be treated by the doctor.

I received an extended reply from a woman named Anne, who is the mother of a child with severe disabilities. Although Anne was prepared to accept abortion for various other reasons, she equated termination of pregnancy on the grounds of disability in the offspring with repudiating the value of her own living child with disabilities: “If people like [my son] can’t depend on their own mothers or on their [physicians] to defend, fiercely, their place in this world, then we’ve failed.”

In my last post, I took issue with Anne’s line of reasoning. I maintain that from an ethical and logical standpoint, children who exist are in a different category from theoretical children who may or may not come into existence. Consider for a moment what would happen if that were not the case. Medical research shows that couples who have given birth to one child with autism often stop having more children. (The term for this is “reproductive stoppage”). You might say “Perhaps they are saving their resources for their one child with autism – laudable.” But are we entitled to pick apart their motives and say to them “It’s OK for you to stop having children if your goal is to conserve resources, but it’s illegal or unethical for you to stop reproducing if your only motive is to avoid having a second child with autism”? Or to say to them “Your decision devalues persons with autism”? Who among us is qualified to sit in judgment on someone else in this regard? (More on this question below)

Although the Indiana bill is nominally about protecting persons with disabilities, it is actually a cleverly repackaged “fetus as person” initiative: “‘Fetus’, for purposes of [this legislation] means an unborn child, irrespective of gestational age or the duration of pregnancy.” This language sparked a wave of protest call-ins to the governor from women who had missed their periods. As reported on NPR:

“The organizer [of this protest] highlighted one aspect of the law — it requires miscarried fetuses, as well as aborted fetuses, to be “interred or cremated by a facility having possession of the remains,” regardless of the age of the fetus….. The “Periods for Pence” Facebook page wrote: “Fertilized eggs can be expelled during a woman’s period without a woman even knowing that she might have had the potential blastocyst in her. Therefore, any period could potentially be a miscarriage without knowledge. I would certainly hate for any of my fellow Hoosier women to be at risk of penalty if they do not ‘properly dispose’ of this or report it. Just to cover our bases, perhaps we should make sure to contact Governor Pence’s office to report our periods. We wouldn’t want him thinking that THOUSANDS OF HOOSIER WOMEN A DAY are trying to hide anything, would we?”

Getting back Anne’s letter: After expressing her concerns about devaluing her existing child by opting for termination of pregnancy in the case of fetal anomalies, she goes on to say: “But beyond that, I think it’s important for doctors to honor the patient’s (or family’s) perspective [emphasis added]. I know that our pediatrician has much disdain for Andrew Wakefield, for example, but he genuinely respected my decision to try a delayed vax schedule for our youngest, not because I’m anti-science or anti-vaccines but because my non-verbal son’s regressions were extreme and alarming during toddlerhood and…separate can of worms. The point is, we had an excellent, respectful conversation around the decision, even though I made a slightly different choice than he would have recommended.”

Now we’re getting to the nuts-and-bolts issue: We want to be listened to by our physician, and treated with respect.

In addition to being attentive listeners, we want our physicians to be good problem-solvers. Anne’s doctor heard her out, respectfully, and then the two of them devised a plan of action together. What patients are counting on, implicitly, is that the doctor has a free hand to recommend whatever he or she thinks is best for them.

In most cases this is true. But not always. It used to be illegal for doctors to discuss birth control . At this moment, in Florida, it is illegal for pediatricians to discuss gun safety with parents. This legislation is contrary to the best interests of children, but pediatricians in Florida must submit to the law or risk losing their medical license. In a similar fashion, the Indiana bill restricts doctors’ ability to discuss options with families, and degrades doctors’ ability to practice good and compassionate medicine. Doctors and their patients are all losers.

At one point in her letter, Anne declares “I think that when you choose to become a parent, you choose the path no matter what.” That is her privilege, and there are many people who share that view. The question is, do we as a society have the right to impose that view on everyone else, or is it better to let individuals come to their own decisions?

Like the proverbial wolf in sheep’s clothing the Indiana bill – which cloaks itself in the language of the disability community, and preys upon folks like Anne – is actually a stealth move to abolish abortion altogether by conferring the status of personhood on fertilized eggs. We cannot resolve that controversy. But we are interested in unmasking the wolf, and revealing this bill for what it really is.

Unless the State can show a compelling reason for intruding (which the Indiana bill does not), there are some issues better left to the doctor and patient to decide.


2 responses to “Life is Complicated – 4: The Wolf in Sheep’s Clothing”

  1. Anne says:

    Whoa. No, I don’t agree with Indiana and don’t think laws should be imposed on a woman’s right to choose, as I said in my first note. Also true, I didn’t feel, reading your first blog post, that you valued the lives of people like Peter. And I think that doctors who specialize in autism spectrum disorders should see the inherent worth of all kiddos, even the ones who can be extremely challenging for some years. Which is wholly different than abortion rights, see?

    But mostly I need to take this to our pediatrician–Dr. John O’Brien of Park Nicollet, Carlson Parkway Clinic–for being the penultimate model of engaging in those nuts and bolts of understanding, respectful conversations.

    Off topic, after years of harrowing, hard summers, Peter is having his second peachy summer in a row. And suddenly life feels easy. That’s what I want parents to know, too….this, too, shall pass. Suddenly he’s easy, sweet company on the deck. It’s our job to honor Peter’s humanity, even if he’s still nonverbal and at the very bottom of every standardized testing barrel.

    I need you to hear what I’m saying, Dr. Copland! Thank you!

  2. drcoplan says:

    Hi Anne
    This illustrates the difficulty of discussing sensitive topics without eye contact, inflection, body language, or prior knowledge of the other person. At least, I hope that is the case.

    First, I’m not sure where you get the impression that I don’t see the inherent worth in kids with special needs. If I could, I would direct you to any of the parents of my patients, or the kids themselves, and I think you would come away reassured. My stepmother used to say “Actions speak louder than words,” and all I can say is that I’ve given my entire professional life to the service of kids with special needs and their families – as equal partners in the enterprise of helping kids and their families achieve their full potential. So I’m a bit mystified as to how you drew an opposite impression. Perhaps you can enlighten me?

    As for me hearing what you are saying: When I spoke about not imposing laws on others, I didnt mean to suggest that *you* were taking that position. My blog post was about the Indiana Bill, and the Indiana Legislature’s self-annointed decision to impose *ITS* will on others. In hindsight, I can see how my writing did not differentiate between when I was reflecting on your letter, versus when I was reflecting on the Bill. Let me say for the record that my impression of you (as far as it can be gleaned from an exchange of emails) is a thoughtful, articulate person, secure in your own values, without the need to impose your values on others.

    Finally – I’m glad to hear that Peter is doing well. Yes, honoring humanity is the key. I was raised Jewish, but I’ve always been partial to Matthew 25:40 “Even as you have done it unto the least of my brothers, so also have you done it unto Me.” I have spent my life in the service of kids whom society at large would consider “the least” of its members – and it has been an honor and source of deepest satisfaction.

    Thanks for speaking up. I hope we are getting each other better now.

    Best wishes
    James Coplan, MD

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