Monday, June 3, 2013

When imagination fails

You have an eight-year-old daughter with severe disabilities. You and your partner have just brought her to the operating room for major surgery. But instead of setting up camp in the waiting room, the two of you leave the building:

"Laura and I crossed half the street to the grass-fuzzy median in front of the hospital. We lay next to each other, the lanes on either side of us quiet, trickling riverbeds."

This is a scene from a short story called Poppyseed in A Guide to Being Born by Ramona Ausebel.

I'd read Ausebel's first novel No One Is Here Except All of Usa fantastical account of a village of Jewish families in Romania who reinvent their history to save themselves from the Holocaust.

I loved that book, and the way Ausebel creates such strikingly vivid and unconventional ways of seeing and feeling things. But by the end, some of the storylines had become a bit too over the top for me. 

I really wanted to like A Guide to Being Born, and I was captivated by her first story, about a group of grandmothers who find themselves on a ship at sea, metaphorically awaiting death.

But many parts of Poppyseed—which revolves around the care of Poppy, 8—didn't strike me as authentic and real. The idea that the parents of a completely dependent child who can't speak would leave a hospital where they've just delivered her to surgery is so far from my experience of parenting, or that of other parents of severely-disabled children I know, that it felt like an annoying sliver lodged in my foot.

As my vulnerable child is being put under in the OR, the last thing I'd consider doing is asking my husband to come outside and lie down on the grass.

I'd be sitting in the waiting room, with a boulder in my chest, trying to slow my breathing. I'd be forcing my abdomen to rise on the inhale and on the exhale sending positive thoughts to my son and his medical team. I'd be hyped up, vigilant, on the off-chance that there's a problem and the doctor needs to speak with me.

I'm not sure why I was so bothered by the parents' divergence from my own experience in the story Poppyseed.

I had no idea when I began this new collection of short stories that one would be about parenting a child who doesn't speak or think like other children, one who spends her days on her back, looking at the ceiling or the sky.

Parenting a child with severe disabilities isn't a common theme in fiction and is poorly understood in the mainstream. Our culture spares no expense in attempting to prevent the birth of such children—who are viewed as inhuman and tragic—and little on trying to understand and support the experience for parents who find themselves navigating this strange new world.

So perhaps Ausebel's depiction of the interior lives of such parents took on a sacred urgency for me.

Can writers do justice to something they've never experienced? Is it possible to "imagine" the complex feelings that swirl around parents of a child with severe intellectual and physical disabilities? No, I don't believe it is. Some things need to be lived.

Parents of children with severe disabilities are full of ambiguity—they see-saw between joy and grief, contentment and wishing things were different, exhileration with their child's presence and angst with her inability to meet cultural expectations. Their love is messy and intense. But as with any parent-child relationship, the child is the parent's world.

So when the father in Poppyseed refers to his daughter in second reference as "our mute and immobile kin" and "our stunted eight-year-old," it doesn't ring true.

Not because in a dark moment a father might not use this language, but because one would expect his everyday narration to be marked with affection.

Ausebel's story then wades into an ethical minefield when the parents, seemingly on the advice of one doctor (do parents of children with severe disabilities EVER do anything on the advice of one person, medical or otherwise?), choose aggressive medical treatments to keep their daughter forever small, in keeping with the way they view her mind.

Many of you are familiar with this intervention—dubbed The Ashley Treatment—after a nine-year-old girl with severe developmental disabilities at Seattle Children's Hospital was given high estrogen doses to hasten closure of her bones' growth plates and had her uterus and breast buds surgically removed.

Last year The Guardian reported on the first boy to undergo an equivalent procedure.

I won't describe the parents' bizarre (some would say savage) reaction to the fictional Poppy's surgery (which involves leaving the hospital again, while their daughter is being sewn up).

I was so disappointed when I thought of all of the people who will read this story—most having no connection to someone with severe developmental disabilities.

In an interview with The New Yorker about the book's theme of parenthood Ausebel says: " kept feeling like the only way to represent just how strange the (very real) experience must be was to push the stories into the fantastical. Those exaggerated elements added more of what was already true, allowing me to see the experience better, like magnification."

I don't think Poppyseed has conveyed the depth of love (however challenging) that exists between a parent and a child who will never achieve conventional milestones, a child who will remain largely invisible and unknown to the outside world.

You'll have to let me know your thoughts.


Sounds interesting -- I often toy with the fantastical in my own writing and have been struggling/working on how to convey violent thoughts/feelings, particularly as they relate to my daughter's disability and our interactions with the world and the systems. I understand your discomfort with people imagining experience that they know nothing of in reality, but I'd argue that it's the provenance of the writer to do just that -- whether it rings "true" might really only be subjective. I know that I just read an incredible collection of short stories that revolved around infidelity and adultery and religion, and I wouldn't presume that the writer had to have committed adultery to write about it --

Well said. You should try to get the author to read this (via publishing house maybe?). From my experience, people mean well but are ignorant, and here it seems to be what's going on. Smetimes fixtion writers should do a bit of research beforehand when addressing certain subjects,Thank you for writing this.

Hi Elizabeth - thanks for your message. When I was reading the story, I was wondering whether I could have "imagined" what my life would be like now -- or even a fraction of it -- before it happened (in relation to my son). And I honestly couldn't. My assumptions would have been really off base. I think to write about a topic like this you would have to do soooo much research interviewing many families over a significant amount of time to really come to understand the complexity and nuances. I hope you will read the story. I'd be interested to hear your thoughts!

Thanks Silvia. Maybe the writer did do lots of research, I don't know.

I hope you and others will read and share your opinion.

The perspective offered by the author puts me in mind of the fears I have, if something were to happen to my husband and I, and a relative would have to take over. Going through the motions of "caring for" without actually caring too much. My daughter, while severely disabled, seems to have an extraordinary radar for authentic love, as well as the memory of an elephant. She could win them over, if given half a chance. But only if she were not mistreated or marginalized. I hope that would not be too tall an order.

Well, apart from what rings true to any given reader (and it seems to me that has a lot to do with the strength of the writing as much as any particular perspective)I actually do know of some parents of a severely handicapped child who plan not only to walk away when she's hospitalized for a grueling, lengthy and life-threatening course of treatment, but to leave town and travel for a few weeks during this period. She is their only child, but
I think the word the previous commenter used applies: she's marginalized.

I think if this same story had been written by someone with firsthand experience parenting a disabled child, our reactions would be different!


I would have to agree with Elizabeth on this one, writers write. It seems since this is a story concerning 'our realm' we might take it a bit personally instead of just judging it on its own merits. Being a Shiatsu therapist, if I read a story by someone about my profession, who is not a therapist themselves, much I'm certain, would not ring true.
The intense experiences we hold as caregivers make us naturally expect deep authenticity. If feel this is lacking then we have but one recourse (and this is especially directed at "A"): we should write our own stories!

I LOVED this idea about going outside to lie in the grass
Last time my child was in for a minor procedure, I planned a lunch to distract myself so I would not be in the waiting room feeling what you describe. I left my cell number with the volunteers who called me when she was in recovery.

Thanks everyone!

Anonymous -- thanks for your message. I "get" going outside if plans have been made with a pager or cell phone. What we have sometimes done is had one of us stay in the waiting room and the other one go out. It was just that in the story there is no mention of this critical detail and it appears that they just waltz outside with no connection to what's going on inside--where their daughter is having major surgery.

Eric -- yes, writers write. But to be so far off understanding some of the most basic nuances in this kind of parenting was what got me. You're write -- if we have a problem with it, we need to write the stories ourselves!

I hope some of you will read this story because I'm very interested to hear how the entire piece hits you -- especially the ending!