Wednesday, August 15, 2012

The monsters in us

Yesterday my blogging friend Meriah Nichols had a piece published in Mamalode called Be not afraid. It’s a candid piece about looking out the window while feeding her daughter Moxie, who has Down syndrome, to see a group of children with special needs walk by. In that moment Meriah is overcome with fear that Moxie will one day be part of that group.

“I’m heart-stoppingly scared that Moxie will be like those kids,” she writes. And at the same time: “I’m deeply ashamed of that fear.”

Meriah’s young son asks his mother, who is now crying, if it’s because of a monster.

“I started to say no, but then I realized I was – monsters, after all, were invading my brain. So I nodded yes. ‘Be not scared of monsters, Mama.’ The boy responds. ‘You should not be scared of monsters.’”

I imagined that the monsters in Meriah's mind were stereotypes about people with disabilities she would have learned as a child. We all pick up cultural values about what is good and what is bad, who is accepted and who is not, without even being aware of it and those biases live in our memory, often at an unconscious level.

The monsters Meriah feared, I think, were depictions of people with disabilities as less than human, somehow lacking, worthless, and so to be feared, as if human indignity could be caught like a flu bug. And Meriah wanted to protect her precious daughter – and herself – from that emotional sting.

Thoughts can pop into our minds that don’t reflect our current way of seeing things. Instead, they are the regurgitation of culturally dominant fears and biases we grew up with. These storylines may surprise us because we weren't even aware we were carrying them. And when they rear their ugly heads they can feel real and threatening.

I think that's what happened in Meriah's story.

It’s not pleasant when this mental "stirring up" happens, but I’m glad it does, because unexamined, these ideas, embedded in our subconscious, can impact how we act.

Which leads me to The Cyclops Child, a piece by Dr. Fredric Neuman published in Psychology Today earlier this month. Oddly, this commentary is published under the header Fighting fear: Confronting phobias and other fears and yet it is a doctor’s account of his own inability to see a child with serious malformations as human, and the fear this engendered in him and his coworkers. Dr. Neuman, we are told, is now an expert in anxiety disorders.

Over 50 years ago, Dr. Neuman was an intern at a Catholic hospital where a child was born with severe malformations. “It had a single fused eye in the middle of its forehead,” he writes. “The irises pointed to the sides. There seemed to be four lids surrounding the eye like a box. It was blind, of course. A large part of the brain and head were missing. There was no nose…The baby’s esophagus and trachea had not separated, so that feeding the child was impossible…Also, the child had extra fingers.”

Dr. Neuman describes the child as “unworldly,” “alien” and not looking like a human being. He says the obstetrician who delivered the baby called it a “monster” – a medical term, Dr. Neuman says, for a grossly misshapen baby.

The obstetrician told the parents the baby had died, to protect them, we learn, and Dr. Neuman feels this was the ethical thing to do. Further, the baby was left to die, unfed, and this caused great anxiety on the unit because the baby did not die quickly. “Because it did not look like a human being, most of the time no one was disturbed by it…” Dr. Neuman writes. Until it cried. “Then it sounded like any other baby. It was hungry, and it could not be fed. Picking it up would not stop the crying.”

Dr. Neuman is asked by a resident to remove the child’s extra fingers for no medical reason but as a “learning experience.” But when Dr. Neuman ties a ligature around the baby’s finger and pulls tightly, it screams. “The kid was in pain,” he writes. “I should have realized that, but somehow I did not. It was because the baby did not really look like a baby...” He puts the baby down and retreats.

The rest of the article details his overwhelming urge to smother the baby because it’s causing such angst among staff on the ward. He says that another obstetrician might have smothered the baby before anyone had a chance to see it. “Such things happen,” he tells us. The baby ends up dying before Dr. Neuman has a chance to see if he has the nerve to put his hand over its mouth. And all these years later he says: “I still think now, that the right thing to do would have been to kill that baby. It wasn’t really a baby; it just sounded like a baby…”

When you think of the hate crime that has been perpetrated against people who are different – who are disabled, gay, the wrong race or religion, poor – doesn’t the rationale usually come down to some version of: “It wasn’t really a (human)?” Throughout Dr. Neuman’s piece, we never learn whether the baby was a girl or a boy because he refers to it only as “it.”

That baby deserved to be held by its parents, the people most invested in its life, to be treated with respect and to not suffer pain.

In another case that reflects societal attitudes about the worth of people with disabilities, a man with autism is being denied a heart transplant in Pennsylvania: Should autism block a man from getting a heart transplant?

It's a complicated case, but it's not hard to see how cultural values and physician attitudes about what constitutes quality of life trickle down into these decisions.

An interesting 2006 journal article crossed my desk about 94 obstetrical and pediatric professionals in a hospital in France who were surveyed about euthanasia. All indicated they would agree to have their own newborn child's life actively terminated through euthanasia for conditions including Down syndrome, intellectual disability or lack of one arm or leg, among other disabilities. One doctor wrote on the survey: "no handicapés are allowed."

And here, a mother writes about learning her teenager with autism was beaten up by a non-disabled peer on the job – at the Department of Disability Services of all places, in the District of Columbia: Eyes wide open.

And that headline sums it up beautifully: Let's open our eyes.

Let’s take a closer look at the monsters that lurk in the recesses of our thinking – the cultural relics of fear and stigma and hate that none of us is immune to.


It seems that the monster in us should be taken care well. I know that everyone of us has our own difference in personality. I think that it necessary to show them their better personality to make them into a better person someday.

Clearly the "monsters" here are the hospital professionals who would snuff out the life of their own child (or ours!) and the doctor who attended to that poor dehumanized child 50 years ago and still believes it would have been preferable to actively kill that baby with his own hands. Would it have occurred to anyone to give that child some love and comfort? This is the very real evil that I fear when I see a group of disabled persons walk by, that they will not be treated as they should be. That all my life I will have to be on guard for my own child to be accepted as human and treated as anyone else.

Thanks for sharing! As a mom of 2 kids with special needs - a 5-yr-old daughter with CP and a 2-yr-old daughter with Down Syndrome - I definitely have had moments - moments I'm not proud of - in which I, despite being a tolerant mom of two kids with special needs - have been, like Meriah, scared of monsters. My daughters are the light and the joy of my life but still as special needs parents we worry that others might not view our kids' potential the same way we do. Thank you Meriah for sharing such a relatable moment in your life as a special needs parent.