We've been talking all week about a fascinating new book called "Far From The Tree" which examines the complexities of being a parent to children in some of the most trying of circumstances.
In part three of my conversation with author Andrew Solomon, we talk about whether trying to find a "cure" for some of these kids' conditions is sending the wrong message - that they'd be better off never having been born?
One of my favorite definitions of the word "interesting" is "counter-intuitive." Something that seems, on the face of it, just wrong. And that was my initial reaction to the news that many in the disabled community are actually angry at the efforts of do-gooders to make them more "normal." "Who are you to decide for me what is a preferable life?" they ask. Even the most well-intentioned efforts may strike the "beneficiaries" as sinister.
Andrew Solomon says this idea, in its most extreme form, is put forward by a man with autism named Jim Sinclair.
He tells parents that when they pray for a cure for autism, what autistics hear is that they're really praying for a different child instead of the one they have. Sinclair says his autism is fundamental to not only himself but to all autistics.
Solomon says Sinclair's position is very extreme, one he doesn't entirely agree with. But he thinks it poses a significant challenge to the opposite, more obvious assumption which is: "Let's make them all just like us."
He says making the whole world standardized is a dangerous direction to go in. Solomon says the assumption "normal" people too often make is that if they could only make a particular disability or condition go away, then a truer or more authentic self would then emerge. But for many, their condition is integral to who they are.
Is there an authentic non-autistic person inside every one with autism? Or a hearing person inside every deaf person? A straight person inside every homosexual or a truer tall person inside every dwarf? Solomon says most people with these conditions don't think so. The wife of a dwarf couple explains to Solomon that she thinks dwarfism shapes the soul as well as the body. Identities are not so easily interchangeable.
But if this constant effort to change these people can be seen by some as somewhat sinister, a perhaps more sinister concern is the possibility of never having been born at all. Thanks to the advances of medical science and the legality of abortions, the number of children born with certain "difficult" conditions could soon be on the decline.
Procedures like amniocentesis allow parents to decide whether they want to give birth to a child with Down Syndrome, for instance, and many decide not to. A quarter of parents say they would abort a dwarf and an astonishing 50 per cent of medical professionals say they would do the same.
"I think there's a danger in having entire segments of the population disappear and there's an irony too which is, for Down Syndrome for example, the prognosis is so immeasurably better than it was 20 years," he says.
Solomon calls himself an abortion libertarian, meaning he supports a woman's choice. But with his book "Far From The Tree," he does hope to better inform prospective parents what life is or can be like for children born outside the norm.
Now if the prospect of "designer babies" is at all troubling to you, you'll no doubt be even more dismayed by what one journalist dubbed "deformer babies." In a somewhat dark bit of "turnabout is fair play," some disabled parents are actually screening for disabilities.
Solomon reports that some dwarfs, for instance screen out average size fetuses and in a famous (or infamous) 10-year-old case, a deaf lesbian couple asked a fifth-generation deaf friend to be their sperm donor. Two deaf children were the result. When they told their story to the Washington Post, they were pilloried, called monstrous and cruel. What's Solomon's take?
"I have a kind of neutral stance on it. I think it can be, for example, very difficult to be a Latino in the United States but nobody questions the right of Latinos to have Latino children," he says. "So I think wanting to have a child like you is understandable."
Further complicating this already complicated matter is an issue raised over and over by Solomon in his book. One of the mantras of "Far From The Tree" is that parents need to do what's best for their child, not what's best for them. Do "deformer babies" meet that criteria? Perhaps. And perhaps not.