Here is the introduction to my book. Share widely and let the story find its way home to a proper publishing house. Happy travels, memoir. Meanwhile, if you want to read excerpts, subscribe to Art As Social Inquiry’s newsletter
Working Book Title: The Making of an Accidental Advocate
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.
Know this before I tell you my stories.
The moodiness of Paris circa1973
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.
PHOTO CREDIT: K.Bleier,AFP Getty Images, Theresa’s Sign in the Crowd at Supreme Court for Affordable Care Act Oral Arguments
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.
5.16.12 with Rep. Jan Schakowsky
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. 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.
And so I end as I began by telling you, “ 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/
First an undated photo of me on the front page of our local newspaper. Then my response in a letter-to-the-editor with portion edited out that did not see print. And there is always the question, “Did our local press self-censor at our congressman’s request?” Welcome to 2014. Read on….
“The newspaper pulled a 2013 story critical of the congressman’s lack of town halls under questionable pretenses. And now the editors print an undated photo that gives the reading public a false impression about the congressman holding real town halls.
These are just two instances in my personal experience where the congressman seems to be coddled by this newspaper.”
Our local newspapers, the Intelligencer and its sister paper, the Courier Times (part of Calkins News Group), recently recapped 2013 in their publications.
The article included this undated picture of me from 2011. I suppose my efforts to have real town halls with my congressman was topical? Oy Vey! Whatta picture!
But why run a 2011 photo of me at a town hall with no mention of my repeated and unsuccessful efforts to get to real town halls in 2013? (There was an event at a church that someone tipped me off about….Jeeesh, and that’s what we have to rely on in Pa-8? Informants?)
Congressman Mike Fitzpatrick (Pa-8) is NOT having town halls. Publishing a picture of me or anybody at a town hall as part of a recap of 2013 is misleading .
The Courier Times printed my response (since removed from the online edition) to having the undated, misleading photo of me on their front page. One paragraph from that LTE was omitted. The entire letter including the deleted paragraphs is here. Omitted paragraphs in blue.:
The newspaper ran a picture of me at a town hall with Congressman Fitzpatrick. The photo was not dated. That photo is from 2011.
Is that how far back the newspaper had to go to find a picture of the congressman at an unscripted town hall??? It’s 2014 not 2011. Publishing a 2011 photo is misleading when this issue of town halls is very topical in PA-8.
The newspaper pulled a photo from its archives of the one person most publicly critical of the congressman on the town hall issue, and has her at a town hall. This creates the false impression that the congressman is having town halls, and his critics are attending.
A DATED PHOTO FROM 2011 would have made my point: It has been a LONG time since the congressman really faced his constituents.
The congressman does not want to be caught at a real town hall. Informed constituents would challenge their representative to square his words with his votes. I would challenge him on his campaign of misinformation about the Affordable Care Act.
Calling the congressman out on his strategy of avoiding unscripted town halls is not personal. It’s the business of the people in a functioning democracy.
The newspaper pulled a 2013 story critical of the congressman’s lack of town halls under questionable pretenses. And now the editors print an undated photo that gives the reading public a false impression about the congressman holding real town halls.
These are just two instances in my personal experience where the congressman seems to be coddled by this newspaper.
A free, independent press sustains democracy. I would like reassurances that our local press holds fast to high standards of journalistic independence. Perhaps we could start the dialog with the printing of this letter. Let’s talk. Is our local press an extension of Congressman Fitzpatrick’s PR office?
Why all this business with town halls, the press, etc?
In trying to get to real town halls to address my congressman’s misstatements about the Affordable Care Act, I stepped into what I believe is a bunker mentality coming from the Congressman and his staff. Real discourse with the public is to be avoided. “Town halls” were held without proper notification of the public, and then they dried up altogether. I tried in vain to get advance notice of town halls. Finally, I decided to keep close track of town halls so I wouldn’t miss any. That effort became the Art As Social Inquiry project, Tracking Town Halls: Do Unscripted Constituent Public Gatherings Matter?
Throughout this piece, I reference the August 2013 disappearing article by Gary Weckselblatt, longtime respected reporter at the Intelligencer. That newspaper piece was critical of Congressman Fitzpatrick and his apparent unwillingness to meet his constituents at town halls. The article has since disappeared from the online version of the newspaper as well as another online outlet that picked it up, PA/NJ NBC News. Also, Mr. Weckselblatt, the reporter, has been removed from the newspaper’s political beat. The newspaper contends that the article critical of the Congressman contained “inaccuracies.” The source of those inaccuracies remains unknown.
Why is this important to me? I want our local press to go the extra mile to show its readership that they do not bend to the will of our congressman. It would help to know what the “inaccuracies” are that caused the editors to banish an article by a respected journalist, and one that, coincidentally was critical of the Congressman. It would also be helpful to know if this information — info that would cause a major news source in our region to censor its work — didn’t come with a little arm-twisting by the congressman or his staff. What are the inaccuracies in the censored article?
Citizens rely on a free press. Democracy is nothing but theater for public entertainment until it ceases to exist at all without a strong, independent, free press. (Open and unscripted dialog at well publicized town halls also helps.)
This letter-to-the-editor appeared in the Midweek Wire print edition. (No LTEs appear in the online edition.)
A COMMUNITY NEWSPAPER REACHING 239,700 HOMES IN BUCKS AND MONTGOMERY COUNTIES, PA.
I have gone to the trouble of keeping a log of town halls in Rep. Fitzpatrick’s district for many months so I can attend a few to talk about my representative’s positions on the healthcare law. The congressman’s staff did not tell me about two that happened in August in Salford Township and Springtown when I asked. I read about them in the newspaper. There have been no real public town halls since then that I am aware of.
After months of keeping a log, I have observed how politics is played in PA-8.
Constituents who want to challenge the congressman on the issues are political liabilities to be avoided especially at public town halls.
I suspect this congressman and many other representatives do not want to be videoed talking to folks at real town halls. They prefer events that are managed or staged where the dialog can be controlled. This, in turn, controls what the press sees. The press then feeds the congressman’s message to the general public.
At a real town hall, the congressman would be on the hot seat. He would have to answer for his statements on the healthcare law and his votes on the gov’t shut-down, for example.
We see the congressman visiting seniors, and tenderly talking to veterans. But he voted for Paul Ryan’s plan to alter Medicare by turning it into a voucher program that would hurt seniors.
And the veterans? The congressman uses every low-ball, incendiary Republican talking point about the healthcare law without regard to facts. Is he really working for the vets ? One out of every 10 vets will get health insurance because of the healthcare law.
So what is really going on in PA-8?
PA-8 is comprised of Democrats, Republicans and Independents. Pleasing them all is difficult.
I believe our congressman’s answer to this political conundrum is image. Appear to be accessible by making many private appearances where challenges are less likely; avoid being challenged in public on the issues where substantive answers are required; and hope this strategy wins enough moderate voters to win an election.
Unfortunately, it seems that serving as US congressman for PA-8 in the House of Representatives has become one long press junket to keep a congressional seat.
Art As Social Inquiry
My daily calls to Congressman Fitzpatrick’s office for the town hall schedule information for Art As Social Inquiry’s daily log, Tracking Town Halls: Do Unscripted Constituent Public Gatherings Matter? , is sometimes met with curt politeness.
“Nothing is scheduled as of right now,” I am often told. “As of right now,” implies that something could be scheduled 5 minutes, an hour, two hours from now. The staff technically fulfills their duty by giving me the “correct” information in the 60 seconds I am on the phone with them.
But any thinking person would connect the dots and ask, “Why is getting town hall information from the congressman’s staff so difficult?” It’s just information like any old movie listing,or the departure and arrival board at Philly International Airport.
Does the congressman not want us to know when town halls are? And what would be his reasons?
When asked about why we couldn’t know in advance about the August 3 “town hall,” where the congressman shared the stage with a representative from the group, No Labels, the staff told me they put the notice in the newspaper when they knew.
The town hall was scheduled at a college. Obviously the space was reserved in advance. Having helped organize events, I know all kinds of arrangements need to be made in advance — logistics with security, parking and other accommodations. Institutions work on schedules. A speaker from No Labels had to be booked.
For the congressman’s office to say that the August 3 event at a college was only confirmed when the notice went in the paper on August 2 really insults the intelligence of the average person to the point where one giggles at the silliness of the statement. We cannot run our lives that way, and who would believe that a congressman, a member of the United States Congress with schedulers in Bucks County and Washington D.C., would not know well in advance.
Some at the event even questioned why it was called a “town hall.” Here is an excerpt from the newspaper coverage:
Fitzpatrick said representing a “more challenging district makes me better representative. I have to listen and respect everyone’s opinion.”
That comment didn’t fly with everyone in the crowd of about 80 people. Robert Mason of Levittown said he became “very angry” listening to Fitzpatrick. He’s one of several people who have called on the Republican to hold town hall meetings on major topics, including health care, immigration, and Social Security and Medicare reform.
“We’ve been after him daily,” he said. “Today, in an hour and 20 minutes, (by his count) there were six questions from the audience and four from the moderator. That does not represent the main purpose of a town hall. It hardly gives the opposition an opportunity to vent their frustration. Why is (Fitzpatrick) so adverse to talking to constituents with different points of view?”
Clare Finkel showed a reporter a printout of a Fitzpatrick newsletter emailed Friday afternoon that didn’t mention Saturday’s event. “I don’t understand what he’s afraid of,” she said.
So what’s up with the Congressman’s reluctance to have town halls and to let people know about them IN ADVANCE?