How We Can Empower Ourselves in a Divided Country
“I am Chinese. I am a stone. I go where I am kicked.” –France Nuyen, actress and psychologist
This line of dialogue was uttered by Vietnamese-French actress France Nuyen in an episode of the 1960s series “I Spy.” In that story’s context, her character spoke as an abused woman who reduced herself to a lifeless lump devoid of self-worth and free will. Nuyen herself was an abuse victim who left acting to become a therapist for battered women. By switching out some words, we could take ownership of this statement:
I have multiple sclerosis. I am a stone. I go where I am kicked.
Did you read these lines as a declaration of defeat? It would be easy to do considering how often we feel at the mercy of an employer, a healthcare professional, or a limited array of drug treatments each with a set of side effects. So many narratives we live by have been proven false. A big one is that we live in a meritocracy where hard work, discipline and ambition will pay huge dividends. Sometimes it’s true, but only as long as the people in charge don’t push an agenda that overrides it. How many of you have been given a pet project that you can run with, only to have it blitzed one day and told to wait for further orders? Then comes the news that you are out of a job. It doesn’t matter why.
You are a stone. You go where you are kicked.
But defeat doesn’t sit well in the gut. You begin to swell with self-righteous pride, imagining those lines going viral on social media health pages, maybe getting printed on tee shirts worn for a fundraiser. They could become the battle cry of a grass roots social movement. In these polarized times, the recent political election showed that “normal” folk judge mouthy activists as being cringe-worthy whiners proclaiming their victimhood. A protester in a wheelchair with attitude is likely to get mocked, dismissed, or pushed into traffic at rush hour. There’s safety in numbers, you might tell yourself. You should be able to put on a tee shirt/uniform and gather in a large group, but somebody’s bound to get nervous when they see a chorus line of mobility aids and cardboard signs with slogans scrawled in magic marker. Is there a safer path towards solidarity? There is, but it’s safer because we’d be preaching to the choir.
Much like underground newspapers serve civilian resistance fighters in occupied countries, online MS communities provide a safer platform for those who feel decimated by the skirmishes fought in our brains and spinal cords. It is the worst kind of civil war, not of citizen against citizen, but self against self, as our immune cells turn on our own tissues without warning. Our myelin is napalmed, our assets are appropriated, and loved ones are torn from our embrace. Though we live in a country governed by a constitutional republic, we are trapped from within by a fascist dictatorship that aims to keep us in perpetual war with ourselves. We either live under a red alert when T-cells strike or a yellow alert when all is quiet again.
I am a stone. I go where I am kicked.
There is another way to read these lines. It can be a resignation without being a defeat. I am resilient, flexible. No matter what you do to diminish me, I am still whole. Or think of the serenity prayer of Alcoholics Anonymous: God, grant me the serenity to accept the things I cannot change/Courage to change the things I can/And wisdom to know the difference.
But maybe you can’t settle for Zen-like peace-love-and-understanding. Maybe you feel up to fighting, or even if you don’t feel up to it, you still can’t quiet the strident voice inside you that wants to get in people’s faces. If this is a recent change, you’re certainly not alone. Every disenfranchised group in this country seems to be rising up in protest after a bitterly hard year of political campaigns.
As disabled people, many of us rely on Medicare and SSDI for our treatment and income. These programs are in danger of major dismantling. We can blame somebody for it and sit on our hands, or we can become activists and reach out to our state’s legislators and give them an earful about how we depend on these programs the way they are.
We tend to think that government institutions are stone monoliths that cannot be moved. But even a big stone can crumble if it’s kicked hard and often. We little stones can be easily kicked, but we can be the kickers, too. Imagine what we could do if we glued ourselves together and made one massive boulder and launched it like a bowling ball down the National Mall from the Capitol Steps, glancing off the Washington Monument, rolling through the reflecting pool before the Lincoln Memorial, and coming to rest in Abe’s big lap.
We’d probably get arrested for destruction of property, but you can’t say we didn’t do it for a good cause.
We are stones. We go where we can kick bigger stones. That’s how we roll, man.
Have you ever experienced any of the following financial struggles due to your MS?