The Neurologist said we had every right to question his advice about seizure medications. He leaned against a paper-covered table, and my husband and I sat in chairs against the wall. Fiona, who was sick with a cold that day, sat in her stroller. “Do you have to follow my recommendations? No,” he said. “You don’t. That’s your right as a parent.”
I was relieved. I’d been hesitant about a particular drug he recommended for Fiona. I wanted to check with the Wolf-Hirschhorn syndrome community and see about other people’s experiences with the drug.
“Let me give you an analogy,” the Neurologist said. Then he told us this story:
He once had a patient who was “profoundly disabled,” he said. She was in a wheelchair. She needed a feeding tube. (There is a way to list these details as facts, and there is a way to list these details as tragedy; the Neurologist did the latter.) She also had frequent seizures. Her father, who was a renowned something or other, was distraught by his daughter’s disabilities. He felt she was taking a toll on his career. When his daughter was around twelve, the father asked the Neurologist: “When is enough enough?” The father asked when the medical world could let his daughter die.
My eyes widened. I waited for the Neurologist to condemn the father’s question.
He didn’t. Instead, his thin, long, seventy-something-year-old face stayed neutral. He detailed the fall-out of the father’s question. The Neurologist had to report it to the hospital, who investigated, and the father and the mother divorced, and the whole ordeal was tragic, really tragic, said the Neurologist.
A knock on the door came. A nurse popped her head into the examining room and asked for the Neurologist. “Excuse me,” the Neurologist said, and my husband and I nodded, and the Neurologist left the room.
Alone with our daughter now, my husband and I turned toward one another.
“What?!” I said, shocked. “How did we get from seizure meds to euthanasia?”
“No idea,” my husband said. “Now I wanna see where this thing is going.”
I laughed, but it was a laugh stemming from the urge to cry, or an urge to do something beyond crying, which did not exist to my body, and so I laughed.
The Neurologist returned. “Where was I?”
“Hospital investigated, father and mother divorced,” I said.
“Right. And it really ruined his career. But,” the Neurologist paused. “Did the father have a right to ask that question?” The Neurologist, I realized, spoke in questions and answers. “Yes,” he said. “Yes, I believe he did. He might not have liked the answer, which was no, we can’t end your daughter’s life.”
I was both relieved the Neurologist consented to that, and furious that I had to wait for a doctor to consent to that.
“But I believe he had every right to ask the question.”
I looked at the Neurologist, baffled.
“Just like you have every right,” the Neurologist said, “to not give your daughter this medicine. You’re her parents.”
I wanted to shake my head violently at the analogy, not just in a way that meant No but in a way that meant Wait, what? Where am I? I wanted to shake my head so hard my cheeks would slap against my gums and afterward I’d find myself in a different doctor’s office, where a different doctor didn’t bring up the killing of disabled people, where a different doctor didn’t liken my reluctance of a drug to an inquiry about killing one’s kid.
“We’re never going back to him again,” I told my husband when we got into the car. My husband agreed.
Yes, the Neurologist was a terrible listener. Yes, he made terrible analogies. But here is mostly what angered me after the Neurologist’s office that day, which happened maybe a year ago but hasn’t left me yet: I’d venture to say very few parents of able-bodied kids have had to suffer through a doctor’s story about euthanizing kids like their own. I’d venture to say most parents of able-bodied kids don’t have any of their doctors bring up the legal and ethical question, “Should kids similar to your kid be killed?”
If the father wanted to euthanize a child who belonged to virtually any other disenfranchised group, I doubt the doctor would argue that a father “has every right to ask that question.”
Yesterday, Claudia Rankine received the PEN Open Book Award for her book, Citizen: An American Lyric, about the everyday micro-aggressions people of color must endure. You’ve probably read it, but in case you haven’t, Rankine writes in poignant prose about the pervasive instances of racism in day-to-day life, and the wearying effects those instances have on people who experience them. It’s a gorgeous, effecting, timely work. It also makes me think about the micro-aggressions people with disabilities (and their families) must endure.
Here’s something I didn’t expect about having a child with disabilities: I didn’t expect there’d be public conversations about whether people like my child should live. I didn’t know I would read headlines about a Princeton Ethicist arguing that babies like my child, if they became too costly, should experience “non-voluntary euthanasia.” I didn’t know I’d have to learn that a professor who said these things could still keep his job. I didn’t realize such micro-aggressions would be a part of permissible public discourse, spearheaded by high-profile men. He has every right to ask the question.
As lawyer and disability rights activist Harriet McBryde Johnson writes of Peter Singer, in this brilliant NY Times essay from 2003, “He insists he doesn’t want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.”
But the take away is: of course she feels threatened.
My husband and I drove home that afternoon, resigned to get Fiona back to her old neurologist, who was twice as far but at least never talked about euthanasia. I called that office and said yes to the next available appointment: six months out.
In the meantime, Fiona still technically fell under the Neurologist’s care. One day, a nurse from his office called and wanted to know if my daughter’s weight had changed. I said yes, by a pound. The nurse consulted with the Neurologist, who said that, based on Fiona’s weight, he wanted to increase the dose of her emergency seizure medicine. I filled the prescription, keeping the medicine on hand for whenever Fiona had a seizure that didn’t stop on its own.
A few months later, we finally had an appointment with the other neurologist. He asked me if we’d had to administer Fiona’s emergency seizure medicines recently. No, I told him. Not in a long while. He asked to see the medicine. I pulled out the plastic Tupperware container in which we keep a syringe of it.
He looked down at the syringe. He got quiet a moment. Eventually he said, “This dose is enough to stop her breathing.”
Dear Readers, if you feel so moved, feel free to share the micro-aggressions of ableism that you’ve experienced.