Friday, May 13, 2011

Fatal flaw, redeemed

A week or so ago, I was telling a friend I had identified one of my social fatal flaws: the inability to tell a white lie. I call this a fatal flaw half in jest, half with gravity.

Since when is honesty bad? An overwhelming majority of our interactions with people are made up of white lies, to make ourselves, our friends and our family feel a little better, or less worse, about themselves or a situation, to soften a proverbial blow, to keep hope alive and postpone disappointment.

What does this have to do with anything? This is not a complete non sequitur.

Last Wednesday, I attended a Peds/Neuro co-sponsored talk on learning/developmental disabilities. The speakers were two mothers. The first was not a doctor, and her daughter was born with and/or developed: central brain damage, cerebral palsy, seizures, scoliosis, osteoporosis. The second was a neonatologist, and her son had regressive autism, meaning his development was normal until he hit two years old, when he stopped speaking and responding.

The mothers were amazingly strong, self-aware, and human, admitting their weaknesses, yet not letting those weaknesses rule their actions. They spoke about their kids, the difficulties they have faced in getting the support they need, the communication issues between the kids and their parents -- how their receptive language far exceeds their expressive language, making it difficult to interpret their needs. Theirs were heartbreaking stories -- yet they came asking for awareness and advocacy, not sympathy, as mothers protecting their children and the hundreds of thousands other children whose voices are not heard.

Someone asked the mothers a question toward the end, one that stuck with me, and probably everyone who heard their stories - when you see someone in a wheelchair at the grocery store, a person with cognitive disabilities standing ahead of you in line at the cashier, what do you do? I confess that my curiosity flares up; I want to ask questions, but it's inappropriate, so I hold my tongue. But because of that, I feel awkward - should I look? Will they see my questions mirrored on my face and resent it? Should I say hello? Is it welcome? Should I look away? Isn't it rude?

Someone asked, and the mothers said: Be honest, but remember that they are there, and acknowledge them. And then added, we have kids with special needs, and we still feel awkward. It doesn't go away.

It's human.

I remember my frustration whenever someone was over at our house, and would inevitably approach my grandfather and say, "Do you remember who I am?" Once. Twice. Then, "Remember me? I'm XYZ, your son's friend." To which my grandfather would reply, "Ohh, yes, yes, I remember you, XYZ." They took it at face value -- the more sentimental would turn and say, "See? He remembers!" and the more pragmatic would nod and carry on. Eventually, my grandfather learned to game the conversation before it really began. "Do you remember who I am?" "Of course, beta [son], how could I forget?" He used the ambiguous pronoun to his full advantage.

He may have been losing his memory, and many of his higher cognitive functions, but he was still sharp, which combined with frustration was a powerful weapon. He refused to be treated as the vocal equivalent of a mime. Eventually he lost his self-defense mechanisms -- given Alzheimer's progression, it was inevitable. But the visitors' questions persisted, even though it was clear as day he had little awareness of his surroundings. It was easy for me to defend him, and to some degree denigrate the questioners. Why torture an already tortured elderly man?

But last week, I was forced to face my confusion on interacting with people who have special needs. And I realized, when faced with my grandfather, those visitors were struck with the same uncertainties and an odd mixture of concern and curiosity. Wasn't this the least offensive way to express that they care?

Curiosity can be empowering, because curiosity begets knowledge, which boasts a certain heft, shape, specificity. My mother would claim I was cursed with too many questions. I would argue I was blessed with a billion feline lives. The confounding variable in these interactions wasn't curiosity, but fear - of judgment, of perception, of hoof-in-mouth disease.

I bore witness to my grandfather's regression for four years, and the frustrating interactions he put up with throughout. But now, I can finally try to pinpoint where we go wrong. Perhaps curiosity not completely unwelcome, but only when accompanied by honest empathy. Empty words are empty. False assurances are false. Glossy conversation tries to pull a curtain over reality.

It sounds very kindergarten, but we sometimes forget the Golden Rule and instead make a spectacle out of a "freak show." But regardless of the exterior, be it glamorous or thorny, inside is someone with feelings and a personality who struggles to express themselves, or sometimes lacks the consciousness to do so. Don't mistake that hurdle for a weakness.

To take a cue from Laurel, sheath any sense of "unquestioned entitlement," and recognize their sense of self is not comprised solely or entirely of their disability. Be curious, do your homework, but don't impose yourself on them.

Let them carry on with their lives, as you carry on with your own. And if the two happen to intersect, address them with dignity, and acknowledge their humanity with your own. Wield your honesty as a gentle tool of awareness instead of a harsh weapon of insensitivity.

Fear is paralyzing. Honesty is inspiring. Initiative is rewarding.

Humanity brings us to our knees.

What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
- William Wordsworth
Excerpt from "Intimations of Immortality from Recollections of Early Childhood"