03 Jul The Personal is Political is Revolution
The personal is political. Well, yeah, I admit it: it was a good phrase years ago, challenging the notion that feminism was just “personal stuff.” It’s a good phrase still, with ever widening applications. So this blog post is personal—in the most political sense.
I’ve long thought that each of us should defend the rights of all of us, even if only from enlightened self-interest, because you never know when you might become part of an oppressed group. I fought for childcare well before I had a child, but it was only then that I fully realized just how crucial an issue this was. I worked for lesbian and bisexual rights long before I found myself in love with a woman. Given my years in the global women’s movement, I’ve joked that one of these days I’ll wake up planting a rice paddy in Southeast Asia. While that hasn’t happened yet, I did fight for the rights of the disabled decades before I was diagnosed with Parkinson’s disease seven years ago. Finding oneself actually inside the oppression is always quite a radicalizing experience.
Regular readers know that at times I’ve reported on my own condition, and the work we’ve been able to do with the Parkinson’s Disease Foundation to help put women on the map of Parkinson’s research. Basically, I’ve been fortunate, since PD, while incurable and progressive, is slow-moving in my case and so far hasn’t greatly affected the quality of my life. The medications have been working, and I’m as busy or busier than ever. More importantly, PD has raised my consciousness with a glimpse into what it must mean to be seriously disabled.
This past week witnessed the American spirit at its basest and at its finest. It’s basest because of the blatantly cruel attempt to destroy what healthcare Americans do have–which compares dismally to that of other industrialized nations. But at its finest because this time protesters were from the disabled community. They filled the corridors on every single floor of the Russell Senate building in Washington, and at the home-state Senate offices of every Republican senator supporting or considering support of this bill. They chanted Save my Medicaid, Save my health care, and Don’t kill me, I don’t want to die.
These protestors came in wheelchairs and on crutches and walkers and canes and even on stretchers, as if in a procession to Lourdes. But they weren’t praying or pleading for a miracle; they were dignified citizens demanding their rights. Some slid down from or were helped out of their wheelchairs to lie on the floor obstructing passage outside Majority Leader Mitch McConnell’s office. At the Russell building, 28 women and 15 men were arrested, roughly carted off by police officers handling fragile bodies in ways ignorant of or indifferent to the damage they might be doing. One young woman in a wheelchair proudly shouted that she was from the Ozark, Arkansas, Indivisible Group, as cops wheeled her away in handcuffs. (What, she was going to attack someone? She was going to run?)
Then this newfound consciousness broke like a great wave against my heart, a wave of light dense with information, with an inescapable knowledge of the details required for even one such protester to be there.
Because in the world of the disabled, each button is provocative, each sleeve a challenge, each pant leg a process of weight-shifting, pain, effort. To bathe, to dress, to move however haltingly or smoothly, on foot or by wheels, is an issue. For individuals whose lives depend literally on caregivers and personal physical assistants, interdependence is not an abstract term. For them, or for those on ventilators, the trip—from, say, the Ozarks to the Senate—would have been an exercise planned to microscopic detail. Each car or ambulette pick-up to be booked, each curb to be navigated, each stop at a public restroom, each visit to a coffee shop. Factoring in the financial cost and the physical-endurance capacity to even make the car or train or plane trip. Having to search out long ways round to locate service entrances or access ramps or delivery elevators instead of those impressively high flights of steps leading to government buildings, steps that spurn your approach. The effects of rain, of summer heat. Needing to factor in extra time for everything. The chronic hurting, the plain inconvenience, the stares of strangers, the exhaustion, the determination. These protestors carried signs reading Healthcare is a Human Right, and Life, Liberty, and the Pursuit of Happiness.
Mike Phillips was one of them. He wasn’t at the Senate, but he became an overnight internet and TV star after being a guest with Ari Melber on Lawrence O’Donnell’s “The Last Word” MSNBC program. Mike, at age 30 “locked in” with spinal muscular atrophy, delivered a ringing message through a voice machine he operates by eye movements; it takes him almost three minutes to “write” one sentence. Eloquent, witty, utterly unsentimental, Phillips and his mother Karen Clay spoke about their rights to healthcare and what would happen to him, to them, without coverage. Their message was viewed by more than a million people within the first 24 hours. Mike referred to being productive in and enjoying his own “really, really, really unusual, totally usual life.”
Really, really, really unusual: No automatic pilot, little or no multitasking, continual mindfulness, relentless focus, attention to every motion.
Totally usual: Eventually, everyone will join this particular community–if they’re lucky to live long enough. Sen. Mazie Hirono of Alaska led the latest all-night session of Democrats holding the Senate floor by speaking in passionate opposition to the bill. Then, early in the morning, she left to have an operation removing a cancerous tumor. This was personal to her.
It should be personal to everyone.
It’s personal to me. So I will tell you that even as a newcomer to a community some people were born into and where others—including beloved friends who are brilliantly productive—have resided for most of their lives, I will tell you that this has changed me. I will tell you that when I saw my sisters and yes brothers being dragged off by cops, forcibly separated from their wheelchairs and caregivers, but still singing “America the Beautiful”; I will tell you that knowing jails as I do and knowing that the Americans with Disabilities Act doesn’t penetrate jails; I will tell you that the flashed V signs and the faces lined with weariness but radiant with crooked smiles; I will tell you that the invincible character of this group of protesters has moved me as no other in a lifetime of activism.
These people share the same fear, anger, hope, and determination of all demonstrators protesting the current regime and dominant political party that seem to be competing with each other for heartlessness. But for this protest group everything is harder; everything costs extra forethought, funds, effort, cooperation, time, pain, risk.
Today, the United States of America prepares to celebrate its July 4th birthday. Picnics and fireworks are all fine enough, but this Independence Day follows the week of those protests, and those protests will persist and grow across the nation. Today we’re witnessing a reinvention of the American Revolution, a moment in which persons considered less than whole are leading the fight to make the Republic itself finally whole.
I’d be the last person to say, Hallmark-card style, that Parkinson’s is “The best thing that’s ever happened to me,” as some people irritatingly chirp about their diseases. It is so not the best thing that’s ever happened to me. But today, finding myself part of this community which by its very existence testifies to the importance of science and to the indomitable human spirit—to find myself in even the smallest way a part of that, is a profound honor I only now am beginning to comprehend.
(This blog post is dedicated to the memory of my friend Laura Hershey (1962-2010), poet, feminist organizer, lesbian activist, disability rights leader, founder of Crip Commentary and The Not Dead Yet Brigade—and is also dedicated to Robin Stephens, Laura’s partner of 20 years, and their adopted daughter Shannon.)