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All Lives Matter

There are three men on a train. One of them is an economist, one of them is a logician, and one of them is a mathematician. And they have just crossed the border into Scotland and they see a brown cow standing in a field from the window of the train.

The economist says, “Look, the cows in Scotland are brown.”

And the logician says, “No. there are cows in Scotland of which one at least is brown.”

And the mathematician says, “No. there is at least one cow in Scotland, of which one side appears to be brown.”

-Adapted from The Curious Incident of the Dog in the Nighttime

Today, I took Ryan to Pump It Up.   For those not acquainted with the concept, it is a giant warehouse full of inflatable bouncy rooms that allow you to jump up and down like a trampoline (but softer), slide, or navigate an obstacle course. It is great fun, especially to people with sensory disorders.

We’re on a first-name basis with the manager at the local place, and today, we were welcomed in our usual way by the staff. We headed to the arena, which is usually empty or nearly so on Wednesday afternoons, as most children are in school at the hour we arrive (our children get out of school early on Wednesdays, because the school system believes that teachers need an extra break from our children. They probably do). Today, however, there were two preschool-aged girls in the arena. Ryan went into his favorite bouncer (and there are several choices available), and one of the little girls followed him inside.  Just as an aside, Ryan does not jump at all in the bouncers. He sits in the corner, against a pillow-like vertical column and rocks, bouncing his back against it.

I usually read or do work, so I was somewhat surprised to hear a voice say, “is he aggressive?”

It took a moment to realize it was someone speaking to me.

“I’m sorry?” I replied, still uncertain.

“I’m just asking if he’s aggressive. You know, yesterday there was a group of ‘different’ kids here,” (and yes, the air quotes were hers), “and one of them was aggressive towards my daughter and I had to complain.”

For one minute, I didn’t know what to say. I was just dumbstruck. Was this really happening?  I formulated a knockout punch.

“No, he’s not usually aggressive toward other children. I am really glad you asked that question though, because it would be terrible for you to assume, solely on the basis of how he looks (because you don’t know him at all), that he would be more likely to be aggressive because of his appearance.”

Now it is her turn to look stunned and to be unsure how to react.

I decide to make it easy for her. “I mean, it would be like me assuming that you are more likely to rob me because your skin is dark, right?” Fuming, I promptly got up and instructed Ryan to follow me to the other end of the arena.

Every day, this prejudice plays itself out in my son’s life. He must be mean, aggressive, or “scary,” as children often say, because he looks different. And adults assume he must be intellectually impaired before he ever says a word (there is actually no connection between most congenital craniofacial disorders and intellectual disability, and the vast majority of people with my son’s condition have no intellectual impairment at all). Even with common genetic disorders like Down Syndrome, which used to entail a life of institutionalization, people are receiving better education and healthcare, and are now writing books, modeling, acting and enjoying the right to marry and have families (sound familiar?).

The irony here, of course, that members of racial and ethnic minorities have their own inherent biases, sometimes against their own racial or ethnic group.  If you want to hear a discussion on inherent bias, I highly recommend you listen to “Cops See it Differently” on NPR’s This American Life.

Discrimination against disability is one of the last acceptable “isms” in our society.

Recently, I saw “Black Lives Matter” spray-painted on an overpass on an I-95. Someone struck through “Black” and replaced it with “All.”  Of course all lives matter.  That completely misses the point of the movement.  As a society, we don’t react that way though, do we?

Facing Life

Clara Beatty, Girl With Treacher Collins Syndrome And Deformed Face, Learns To Navigate World.

This week saw another news story about a child born with a facial difference who almost did not come into the world. Clara Beatty, age 9, has Treacher Collins Syndrome (“TCS”), a craniofacial disorder with a known genetic cause. It frequently causes hearing problems (ranging from hearing loss to total deafness) and breathing difficulties caused by a narrow airway. It does not typically have neurological or cognitive effects, and there are very successful people living productive lives with TCS.

Clara was almost not Clara because her parents (they were living in Belgium at the time) were told by doctors that most people in their situation abort. When is it ever ethical for doctors to provide “ultimate advice” like this, as opposed to simply providing the parents with information about the condition (which is plentiful in the Internet age)?

You may be surprised to find out that ethical or not, it happens regularly, all over the world. This is a direct function of the inherent paternalism in our system of medicine — the patient is incapable of grasping the full import of the diagnosis, so choices must be made for the patient.

I often tell people that the one upside to not knowing a thing about our son’s condition before his birth was that I didn’t have to listen to people tell me how he would have a life not worth living. Back in the early 2000’s, my husband and I went to a craniofacial conference that included medical personnel and families. There was a series of “providers only” sessions and one of them — get this, was entitled, “The Benefits and Burdens of Pre-Natal Diagnosis.”

An army of doctors and nurses were at a conference with families who knew from first-hand experience what those benefits and burdens were, and rather than hear it from the families, they chose to discuss among the ignorant. This example epitomizes the hubris that is all-too-common in the profession — patients and families have nothing to teach.

The article contains another, implicit issue. The focus of the discussion in the story is on how Clara appears different. The underlying message is that the doctors told Clara’s parents to abort her because she would never look like everyone else. Clara eagerly anticipates her facial growth so she can have some surgery and look more like everyone else, so people will stop asking questions and staring.

What Clara does not know yet is that the staring will never stop. No surgery or series of them will erase the fact that she was born with TCS. Instead of celebrating her triumph, the focus is on her “deformities.” How important is it, really, to look like everyone else? In her memoir, Autobiography of a Face, Lucy Grealy (who later committed suicide) writes:

“I spent five years of my life being treated for cancer, but since then I’ve spent fifteen years being treated for nothing other than looking different from everyone else. It was the pain from that, from feeling ugly, that I always viewed as the great tragedy in my life. The fact that I had cancer seemed minor in comparison.”

Every year, we take our son to a top-rated craniofacial clinic, and every year, some doctor rolls in and makes a suggestion about some possible surgery or procedure that will “normalize his appearance” or will make him “look better.” My response is always the same: this is our son’s face, not ours, and we don’t make the decisions about it. If he asks for surgery, we can discuss it, and he can go ahead with a thought out decision about it, but we and he must do so with a sense of realism — he will always look different from other people, and the fact that is a problem is not his problem to be surgically corrected, but the rest of the world’s problem, which unfortunately, can not be surgically corrected.