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Ellen Painter Dollar

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When Parents Hope for Their Children to be Cured, Are We Really Wishing That They “Cease to Be”?

When Parents Hope for Their Children to be Cured, Are We Really Wishing That They “Cease to Be”?

Last updated on: November 13, 2012 at 6:15 pm by Ellen Painter Dollar

When Parents Hope for Their Children to be Cured, Are We Really Wishing That They “Cease to Be”? 2012-11-13T18:15:47-05:00 Ellen Painter Dollar

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Messages about Andrew Solomon’s new book, Far from the Tree: Parents, Children, and the Search for Identity have been coming steadily into my inbox over the past few days. The author interviewed hundreds of families in which a child has some identifiable difference—autism, Down syndrome, violent criminal tendencies, being the child of rape. His resulting narrative focuses on “a crucial question: to what extent parents should accept their children for who they are, and to what extent they should help them become their best selves.”

This is similar to one of the central questions I have grappled with in exploring pre-embryonic and prenatal screening for genetic disorders, in the culture at large and in my own life: to what extent parents are rightfully concerned with alleviating or preventing a child’s suffering due to a genetic disorder, and to what extent they ought to value, and help others to value, their child just as he or she is.

I will certainly read this book, and likely write about it here. But today I find myself shaken, a little angry, and a little confused after reading a quote from Solomon’s book, as reported by Huffington Post blogger Lisa Belkin. Solomon interviewed an adult with autism who said:

When parents say ‘I wish my child did not have autism,’ what they are really saying is ‘I wish the autistic child I have did not exist, and I had a different (nonautistic) child instead.’…This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

This quote made my gut clench, along with my teeth, because it ascribes an intent to parents that is utterly foreign to my own experience as the parent of a physically and genetically different child (although in our case, she fell quite close to the tree, seeing as she inherited her brittle bone disorder, osteogenesis imperfecta, directly from me).

I want to be generous to the person who said this of parents (his or her parents, or parents in general?…I wonder). I know that autism is very different than the bone disorder I and my daughter live with. It affects personality and social interaction, while ours affects bones. Note, however, that I did not say our disorder “merely” affects bones. I refuse the easy categorization of physical disabilities as fundamentally different than other types of disorders, as “merely” physical, for I know firsthand how tangled up body, mind, spirit, and soul really are. My three dozen fractures, crooked spine, mismatched legs, and scars have made me who I am, in private and in public, inside and outside, just as surely as an autistic person’s inability to read body language or disinterest in others’ emotional reactions have made her who she is. And I have no doubt that my daughter’s dozen fractures, along with the despair and anger she feels every time they occur, have made and are making her who she is and will become.

Do I wish my child would cease to be who she is? That I would cease to be who I am? Nononononononononononono. I reject that notion with everything I have and everything I am. But do I think it is sad, and awful, and fundamentally wrong when a little girl’s leg breaks for no fucking reason, when she slips on a book on the floor, when her toe catches for a moment on the rug? Yes. Yes I do. And if there were a way to fix her bones, my bones, to make sure no one in my family ever has to witness or feel that moment of hearing/feeling the crack, and know immediately that another pile of plans and hopes have just been lost to the snap of a bone, I would grab it without hesitation.

I want to understand those who feel that a desire to cure, to alleviate suffering, is an assault on identity. Intellectually and even, to an extent, emotionally, I can understand why they feel so. But I also don’t want to sit by silently as every ancient measure with which we define good and bad, right and wrong, just and unjust is sacrificed to the cause of acceptance. In our well-meaning zeal to affirm unique identity, I don’t want to lose sight of the fact that when bones and brains and psyches don’t work as they were intended to, many things of value are lost even as other things of value are gained—and that it hurts to have bones or a brain or a psyche that doesn’t work as it ought, and not only because of other people’s inability to understand or accept.

Lisa Belkin writes of Solomon’s work:

“Parenthood abruptly catapults us into a permanent relationship with a stranger,” [Solomon] writes. And the coming to terms with that fact, the acceptance of that person who is never as you expected they would be, the loving them because of their differences and seeing the world anew through their eyes, all of that is what makes us parents.

Yes. Absolutely yes. Every parent is tasked with the hard and joyous job of learning to know, accept, and love the child(ren) they have been given. But I’m not convinced that this job requires us to fully accept and love the extra burden of pain and difference that some children and their families must bear.

A previous post addressing this topic, titled “How a Diagnosis Can Both Help and Hurt” is here.

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