Introduction to a work-in-progress,
The Making of an Accidental Advocate
Know this before I tell you my stories.
1973. I was 19. In Paris working as an au pair, a babysitter.
Most American teenagers didn’t know about au pairs in the 1970s. But the college dropouts looking for escape routes, some of us knew. We were the failures. We were banging against the psychological walls in our heads. We were suffocating in lives where the possibilities were out there. We were desperate to know. Know what? That’s just it. We didn’t know what we were so desirous to feel, but we knew it was out there – anywhere but here. We took risks. We had nothing to lose.
People like that, like me, we somehow happened upon words like au pair, and latched onto them as our ticket to anywhere but here.
Even as s a teenager I owned my existential crisis by letting myself feel it — not that I had words for what I was doing, or the questions that consumed me. What is this crazy planet I’m on? The hellacious suffering? The hatred? The killing? Disease? How did I get HERE? What’s with this God-business? So much hatred and prejudice in God’s name? A God? And after all that we die? What the hell??? What is real? What is real?
What is real? The asking was an admittance that I suspected that what I was seeing was not…real. A record playing at the wrong speed. Something about life just wasn’t right. Why so much suffering?
Body counts from the Vietnam War, race riots, and protesting American teenagers gunned down on a college campus were served up on TV. The television mirrored the suffering I saw at home. I watched Multiple Sclerosis claim more of my mother’s body every year. First she shuffled while holding my shoulder. She moved to a walker, and eventually a wheelchair when I was a teenager. By the time I had my first child in my thirties, my mother’s muscles had atrophied to the point where she could no longer swallow. She died at 56. Life took its good ol’ damn time leaving her body, one listless limb after the other over 30 years.
What is real? I insisted on knowing. The suffering I was seeing sure wasn’t. That was my attitude. Sabina Brown never said an unkind word to me. She graciously extracted life’s lessons from her disease. Not me. I was angry for her. I just didn’t know it at the time.
My teenage mind was a tinderbox. And for whatever reason, I was not detoured by substances to kill the brain fire. I intuitively knew that to save myself I had to jump into the blaze. I never stopped asking the questions. I just stopped asking out loud when teenage angst was no longer attractive in a thirty-something. I became a spiritual knockabout secretly asking What is real? What is real? of E V E R Y T H I N G. The trail took me to life’s edge where I had to choose to give up everything I thought I knew to follow the trail into the unknown where answers lay. Or stop. Turn back. Play it safe.
I jumped. Asking What is real? pushed me down my psyche’s dark hallways, and through mind doors that seemed to open into deep, cold, desolate interior spaces–Where am I? I had to give up all notions of space, time, and who I thought I was if I was to survive the passage through my own psychological baggage. I shed pieces of myself like a distressed plane dropping fuel to save itself. I gave up what I thought I knew about everything. I jumped off a cliff into identity-less-ness. I tussled with my psyche to let go of conditioned patterns that made me feel safe but also stuck. Sometimes the tussle felt more like a psychic bloodbath. Who will be left inside my head? Maybe the one who can hear the answer to the question, What is real? I had to know. I was willing to give up my identity to know. S C A R Y. There was no ground beneath my feet. If I ended up at the bottom of the rabbit hole then so be it. I wanted the answer to my question even more.
If courage were measured by our tenacity to get answers to the big questions perhaps society would be more generous conferring the label success. All education does not come with a diploma. Our great personal leaps and courageous stretches are interior personal accomplishments that often do not present outwardly. Most of the time we are the only ones who know what we have achieved save for a kindred spirit here or there. We are alone with our un-seeable successes that look like failures to the outside world. Our successes cannot be weighed, counted, measured, calculated, reasoned, or calibrated by society. Success becomes a holy word uniquely ours.
We may ask our questions at 15 in a fit of teenage angst, and then be told we’ll grow out of it. Or we get the subliminal message not to ask such things. Or we spend decades putting round pegs into round holes dutifully fulfilling our self-assigned roles until hardship, disease, trauma, disillusionment precipitate a mid-life crisis. THEN we finally ask, WHY ? I did everything right. Why? Our successes have failed us. We feel lost and empty.
I was fortunate enough to feel so lost and cavernously empty at 19 that I quit college after a week.
I chose the school for its field hockey team. I certainly had no idea what I wanted to do in life, and I gave myself every reason to hate school – the roommate, the beanie the freshman wore at initiation. The truth? Life’s big questions were running amok like hidden apps or viruses just below wakefulness. I followed the impulses I had yet to understand or identify.
I. Had. To. Run.
Quitting school was the start of my very long list of failures, and the beginning of a lifetime of jumping into agita. Life perturbed me. I did not settle in like batter poured into a muffin tin, all nice and neat and formed. I held steadfast to the question, What is real? and ran headlong into impressive failures that unearthed even more questions and more failures like Russian wooden nesting dolls one inside the other.
At 19, the answers were out there in the pages of a teenage magazine. I read an article about a girl who worked taking care of French kids. Au pair. I made my way to Paris finding work as an au pair. A college dropout, babysitting for room and board, and $60/month in a city that could be very dreary at times, yes, I said dreary. Overcast, cold, and lonely winter days dragged on. I had no friends, no money to splurge on anything. I was taking care of two bratty kids who were acting out due to a freshly minted divorce. And they thought I was atrociously stupid because I couldn’t speak rudimentary French. The sass reached epic levels.
But there was no going back. I had turned my back on convention. Was I going to fail at running away too? Nope. I leapt into fear, loneliness and poorness because I had no choice. I also kept running because I knew that in some backstairs mental place the answer to my question What is real? lay in those gray Paris days and beyond into the unknown –in the world and in myself. I could not uncover those mysteries by playing it safe. I may have looked over my shoulder once or twice at the familiarity of home, but quickly admonished myself to press on.
Forty-one years later my adventures in failure have left me with only one thing I can give the world – but it’s a big, glorious, wet-kiss, dog-licking-your-face kind of colossal gift:
I will stand in your pain with you. You are not alone. I am not afraid. You are not alone.
In 2008 I started a series of portraits for my art project, Art As Social Inquiry. I asked people how they got healthcare. I interviewed them, wrote up their accounts, and attached the stories to their portraits online. (artassocialinquiry.org)
Each shared story was a fissure leaking information from this country’s foul secret about insurance. My research told me the policy wonks were well aware of the ineffective health insurance delivery system that was leaving almost 50 million uninsured  and another 25 million under-insured. Many insiders were working on the new healthcare law to stave off further collapse. The man-on-the street, however, was clueless unless it happened to him. The insurance it could destroy a life.
My anecdotal evidence mirrored the statistics. I found people who were being bankrupted by medical bills. They were losing everything they had worked for all their lives just because they got sick. Others experienced major medical events only to discover they were under-insured. They couldn’t pay their policies’ out-of-pocket costs. They mortgaged their homes to pay medical bills. I talked to too many families whose loved ones died because they could not get timely medical care. Monthly insurance premiums were sometimes as much as a person’s mortgage. Sick people whose jobs didn’t provide insurance, or lost jobs because of illness were uninsurable. The insurance companies set premiums prohibitively high to cover their risk in insuring the sick. Or they would not sell them insurance at any cost. No profit in it.
I found that health insurance in the US is a moneymaking enterprise that exits to deliver profits to shareholders. Delivering access to healthcare for the making of a strong, productive workforce is a nifty slogan for brochures, but has no place on the ledger sheet. When we think of capitalism we think, for example, of a company selling sneakers. A company sells sneakers. The company hopes we buy their shoes, love them, wear them out quickly and buy more. Good ‘ol American ingenuity we’re all so proud of.
Insurance companies on the other hand sell a product they hope everyone will buy but no one will use. When customers use insurance, profits decrease. Insurance companies have gone to great lengths not to pay claims. They use delaying tactics. They comb medical records looking for bogus reasons to deny expensive claims. A migraine not reported on an insurance application could be used as a reason not to pay claims for a stroke 10 years later. The new healthcare law, the Affordable Care Act,  outlaws some of these practices.
My portrait stories connected the dots. I saw how the decisions in the boardrooms to make money played out in real people’s lives. Not good.
Story after story, day in and day out, year after year. These were the punctures that leaked the truth about our very dysfunctional system for accessing healthcare.
The glue keeping the whole mashugana together was fear. A parent with a sick child feared losing the insurance, a lifeline for his child, if he lost his job. The healthy uninsured feared getting sick, and having no means to pay for care. Fear kept time like the steady tick tock of a metronome one could sometimes forget was there. And then a reality check, “O yeah, I really shouldn’t rock climb. What if I get hurt? I can’t afford the medical bills.” Tick tock. Fear’s ankle weights were just heavy enough to interrupt living.
People were not going to use the power of the purse. They couldn’t boycott insurance. They needed it. The insurance companies had us all in a stranglehold.
I listened to the stories and I got it. Our country was lying to itself. How could the USA claim to be the best in the world when millions of our citizens were not getting access to healthcare, a basic human right. We don’t believe healthcare is a human right? Let’s man up and say so. Let’s distribute lists to the uninsured. Tell them what they are doing wrong so they stop doing it. Uninsured problem solved. How are they falling short as human beings trying to meet their basic needs? For the record, why isn’t healthcare a human right? I’m listening.
A medical horror story here or there, and we dissolve the phlegmatic lump like a capful of bleach in a gallon of water. No big deal. But stories were piling up. And every single one took up space in me before making it onto the canvas. Research told me that my portrait stories represented the plight of many millions in this country. I was going to burst.
By late fall 2011 the United States Supreme Court had decided to take up the challenge to the Affordable Care Act. The law while far from ideal was a very good start in getting millions access to health insurance. Oral arguments would be heard in March 2012 with a decision to come late June.
I lost it.
Nine justices on their gilded perch were going to tell us whether or not the new healthcare law is constitutional?
Do they have any idea what it’s like having one’s whole life consumed by fear of medical debt? Having one’s child die because she tried to save money by cutting back on her insulin? Having saved one’s premature twins but lost the house, rental property and marriage to the financial struggle because of being under-insured? This will not do. No. N-O. NO!
“I’ve had it. I am facing down this government.”
We can’t un-know what we know. We can pretend to ourselves that we don’t know what we know. Yes, lie to self. Self-lying exacts a price. Our very existence becomes un-real. We steer ourselves away from life’s adventures and surprises. Self-lying fogs up our internal compass. It tamps down the wings that get us to self-discovery. Why would we do that? Change is really scary. But lying to self numbs us. What to do?
I was already in too deep to lie to myself about what I knew. How could I stop knowing what I had witnessed? Adults who had been through insurance hell teared up, “I never told anyone the whole story.” A parent shared every detail of a child’s premature death due to some insurance issue. The three hour “death” interviews left me nauseous. I would have to speak up. But how?
Speaking up for me meant standing with the healthcare portraits in front of America’s symbols of democracy, the Supreme Court of the United States, and the US Capitol in Washington D.C. I stood with a different portrait each day, 5 hours/day, 2-3 days/week for 5 months no matter the weather. I detached from the self who was afraid and embarrassed to be drawing attention to herself. BE QUIET! And carried on.
I had brooked the moodiness of Paris decades earlier and been recast. Then I hadn’t even had a plan scratched on the back of a napkin. I could do this.
I unfastened my wings, slung a 40″ x 30″ portrait over my shoulder, and walked the half mile from Union Station to the US Supreme Court for five months. There, on the public sidewalk where I was free to exercise my First Amendment right of speech, I told the stories behind the portrait faces – to tourists, passersby, workers, the Capitol police, journalists, groups of schoolchildren, politicians, foreign visitors.
Some cried and hugged me, thanked me for standing. Somebody finally understands the trouble I’ve had was the message. Others came out swinging against the Affordable Care Act. The vociferous opposition to the healthcare law made me wonder if I was missing something? I would find out.
I put myself in the ring. I stood by day. At night I studied the law for hours. I learned quickly that I needed to prepare for the Niagara Falls of propaganda that came at me every day. There was the occasional respite from someone who actually wanted to have a real policy debate about the healthcare law.
Connecting to people’s pain strengthened my resolve. I wasn’t moving. Five months in the trenches left my wings a bit tattered but intact. The stories needed to be told.
This book is the story of how one person’s dogged pursuit of the question What is real? landed her smack in the middle of the fast lane of public, political crossfire in front of the US Supreme Court and Capitol. No book about the making of an accidental advocate would be complete without the telling of the stories that got her there.
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 “Key Facts About the Uninsured Population,”The Kaiser Family Foundation, Sept.26, 2013 http://kff.org/uninsured/fact-sheet/key-facts-about-the-uninsured-population/
”How Many Are Underinsured? Trends Among U.S. Adults, 2003 and 2007,” The Commonwealth Fund, June 1, 2008 http://www.commonwealthfund.org/publications/in-the-literature/2008/jun/how-many-are-underinsured–trends-among-u-s–adults–2003-and-2007
”Affordable Care Act Summary,” Obama Care Facts: Dispelling the Myths http://obamacarefacts.com/affordablecareact-summary.php
Chief Justice John G. Roberts, Jr., Justice Antonin Scalia, Justice Anthony M. Kennedy, Justice Clarence Thomas, Justice Ruth Bader Ginsburg, Justice Stephen G. Breyer, Justice Samuel Anthony Alito, Jr., Justice Sonia Sotomayor, Justice Elena Kagan. The Supreme Court Historical Society, http://www.supremecourthistory.org/history-of-the-court/the-current-court/