The wail of the horn and slam of the brake took forever, but lasted maybe thirty seconds. People raised their heads and yanked off their earpieces to stare out the window. Our train screeched to a sudden halt in the winter darkness out in the middle of nowhere. Judging by the chatter and gasps, the passengers knew what had just happened. The driver climbed down the cabin steps and searched the tracks below our carriage with his torch.
“He’s looking on the wrong side.”
A neatly bearded, suited, passenger standing next to the door opposite me held his hands over his eyes as he stared into blackness below him.
We are accustomed to seeing in particular ways. An “I’m fine” follows a “How are you?” and if someone responds instead with “the sky sure is green today” we’re forced to pause, to consider this slightly unusual event. When we see a disabled person, someone whose behavior or appearance is remarkably different, who doesn’t fit into our established mental categories of “ordinary person,” many feel disoriented and afraid.
Leadership in the disability community stems first from transforming whenever possible the limitations of disabilities into strengths. If you can see what makes you different as an advantage rather than as hardship, you will feel more confident, and this confidence can inspire others. I would define leadership as it relates to the disability community as just this imaginative awareness: taking what others see and rewriting it so they can attempt to see it your way, too. It’s not unlike what Keats called “negative capability”: holding two contradictory ideas in your mind (advantaged/disadvantaged, blessed/cursed) and coming to inspiration through the tension of these opposites.
Chrissy spun at the foot of the bed with her left hand in the air. She was dancing. The room was dark, and only some of the moonlight seeped in through the plastic shutters.
"What are you doing?" Michael said.
She spun faster, her hand flinging around as if she were a Kuchipudi dancer in India. Michael watched her for a moment and smiled. She was a child. A bird. One of those flailing green air men in a used car lot.
It is the struggle for life that breaks our will to live.
But live we must. We must not internalize our oppressors who say we have no worth because we don't have a paying job. Who say we are a burden on our families and friends. Who say it is our fault we are not well. Who say we deserve this due to karma. Who say we could be better if we just tried harder. Who say there are many treatments that work. Who don't understand the constant fights with insurance companies, the stop-watch doctors, the burned out anti-social workers, the nonstop misdiagnoses, the lack of decent support, the total exclusion from most of the world. All the things we used to love to do--gone, gone, gone. And the heartbreak of all the "friends" that leave when they don't want to know our new lives as a "sick person" because it makes us a bummer. Too real. Too negative. Too inconvenient.
Unlike Harilyn Rousso, I never had a choice whether to claim and name my cerebral palsy. It’s been twined around my life for over thirty years like a plant around a trellis. (I haven’t decided which is the plant and which is the trellis—maybe that will take another thirty-something years) My level of mobility impairment, though far from the most severe with this kind of disability, has always made the thing that is “wrong” with me front-and-center, in-your-face obvious. I guess like many people in my situation, I assumed both rightly and wrongly, that mobility meant freedom, that any standing position, no matter how shaky, was better than facing life from a chair. I would have guessed, before I read this book (which has the best title in the world, by the way) that it felt better to be the people who stumble, hobble, or hop. But we all have an unattainable, airbrushed image to compare ourselves to, and apparently only very slight deviations can exist in an American, especially an American woman, before she longs to punish herself and her parents who wonder what went wrong. I suppose that makes me very different than able-bodied readers who delve into Don’t Call Me Inspirational, because it tells the tale of ugliness and awkwardness, not in an ordinary but in an imperfect body. This was the most surprising.