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THIS WAS A VERY DRAMATIC and fascinating time in the politics of mental health, and I wish I had felt more comfortable being as directly involved as I would have liked. While I quietly supported funding for various mental health causes and joined groups of cosponsors of some bills, I was afraid to try to lead—because someone might ask me what personal reason I had for making this a priority. I was mortified by the prospect that someone would find out I was getting any kind of psychiatric or psychological care, because I had successfully convinced the press that my time in rehab as a teen was a brief youthful indiscretion that was only made public by someone seeking money during the Palm Beach coverage.
My party line was that I had never used illegal drugs or abused alcohol since my high school visit to Spofford Hall. I just assumed nobody would notice if, every once in a while, I drank more than my share of shots at the Red River Grill and then called in to my office the next morning to postpone my first appointments.
I deferred to others, more established than me and more comfortable being “out” about their mental illnesses and addictions, who were creating a whole new national dialogue about mental illness. Bob Boorstin, the thirtysomething former New York Times political reporter turned consultant and speechwriter who was working with the Clintons on healthcare, was probably the youngest, most prominent person willing to come way out about his hospitalization for bipolar disorder and the challenge of managing a mental illness and a career. From his earliest days in the Clinton White House, he openly discussed his first manic-psychotic episode, in 1987, which took place while he was working on the Dukakis campaign. And he was a unique spokesman for the emotional politics of having a mental illness and the Washington politics of getting his care covered.
Boorstin was close friends with Dr. Kay Redfield Jamison, the prominent psychiatry professor at Johns Hopkins who had recently co-authored the authoritative textbook on my disease—which she still liked to refer to, old-school, as “manic-depressive illness.” But only a handful of colleagues in mental health knew that she had struggled with the disease herself for years. In April of 1995, just months after I started in Congress, she stunned the medical and political worlds of Washington—where she and her husband, schizophrenia researcher Dr. Richard J. Wyatt, were well-known—by “coming out” to the Washington Post Magazine and announcing an upcoming “memoir of madness” called An Unquiet Mind. It became an overnight bestseller, showing just how many people were desperate to know more about mental illness and talk about the real world of its care.
Kay was involved with a mood disorders conference held annually at Hopkins—founded by her colleague Dr. Ray DePaulo and known in the District but not nationally—where several older, prominent people recently had come out, including 60 Minutes correspondent Mike Wallace, Dick Cavett, and author William Styron. (The first public person to come out in a big way with bipolar disorder was actress Patty Duke, in her 1987 autobiography and in a bold 1992 book just about her experience with the illness.)
These brave people began coming out to help fight stigma, increase appropriations for the NIMH, and support the mental health provisions of the Clinton healthcare plan. But after the Republican revolution they were also trying to save the largely bipartisan gains of the previous years. I admired them and never imagined I would join them—I really didn’t yet see what was wrong with me through the same medical prism they did. They were fighting—and possibly endangering their own privacy and careers—so that the public, and the business and political establishments, might one day see their symptoms as just one more medical problem that deserved to be covered and respected like cancer and diabetes.
I wasn’t yet ready to take responsibility for my own illness, for my own health. When I look back at my journals during this time, I didn’t really understand much about myself or what was wrong with me. So it was probably a good thing I wasn’t anywhere near ready to be “out.”
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DURING MY FIRST YEAR in office, I kept a pretty low profile in Congress and, politically, tried to stay closer to the middle of the road than was my nature. I turned down pretty much all national media requests. When CNN asked me to be on a panel of legislators—including my father and Chris Dodd—talking about how liberals would deal with the new conservative majority, I turned it down; correspondent Candy Crowley announced on the air that the reason I said no was because I wasn’t a liberal.
Then one day in late March of 1996, I decided I had to stop being so cautious. We were in the middle of a debate about one of the more infamous bills during the Gingrich era, the Gun Crime Enforcement and Second Amendment Restoration Act of 1996, which, based on heavy lobbying by the NRA, proposed lifting the ban on many semiautomatic assault weapons and large-capacity ammunition-feeding devices that President Clinton had signed just two years earlier (and I had passed in the Rhode Island legislature). One of the active Republican cosponsors of the bill was Rules Committee chairman Gerald Solomon from the district around Lake Placid, New York. He was thirty-seven years my elder and none too happy when I asked for two minutes to address the bill and just went off on him.
I started a little shakily—describing the conservative logic of the bill as “just bogus.”
Then I started building up a head of steam, yelling, “I cannot believe . . . you have the nerve to bring this bill up,” especially since only a week earlier there had been a horrific school shooting incident, in which sixteen five-year-old students and their teacher had been murdered at the Dunblane Primary School in Scotland.
“Families like mine all across this country know all too well what damage weapons can do,” I said. “And you want to arm our people even more? You want to add more magazines to the assault weapons so they can spray and kill even more people?
“Shame on you. What in the world are you thinking when you are opening up the debate on this issue? Mr. Speaker, this is nothing but a sham, to come on this floor and say you are going to have an open and fair debate about assault weapons. My God, all I have to say to you is, play with the devil, die with the devil.
“There are families out there, Mr. Speaker, and the gentleman will never know what it is like, because they do not have someone in their family killed. It is not the person who is killed, it is the whole family that is affected.”
After I finished by loudly announcing that the assault weapons ban should stay in place, Solomon asked to speak. He said he had great respect for me and my family but added, “I am going to tell him [me] something: when he stands up and questions the integrity of those of us that have this bill on the floor, the gentleman ought to be a little more careful. And let me tell you why!”
As I began walking away from the microphone at the front of the chamber, I yelled, “Yeah, go ahead, tell me why.”
And then he just started screaming, “My wife lives alone five days a week in a rural area in upstate New York! She has a right to defend herself when I am not there, son, and don’t you ever forget it. Don’t . . . you . . . ever . . . forget . . . it!”
As I walked away, a number of reporters heard Solomon dare me to “step outside” with him. It was the lead story on all three networks that night. And it was, in retrospect, the day I first found my voice as a Congressman, the day some of my colleagues started thinking, Maybe there’s a there there.
While the media noted that I appeared to be invoking my own family’s experience on the House floor, the truth was I was angered almost as much for my girlfriend, Kate Lowenstein, who had lost her father—well-known New York civil rights and antiwar activist Allard Lowenstein—to gun violence almost exactly sixteen years before, in March of 1980, when she was just nine years old. Al Lowenstein had been a close friend of my father and my uncles, and Dad had given one of his eulogies. He was buried near JFK and Bobby in Arlington (I put a stone on his gravestone the day we came to get the dirt for Rabin’s funeral). Al was murdered in his New York office by Dennis
Sweeney, a former protégé of his who was known to have been suffering from schizophrenia. Kate and her older brother had been active in making sure Sweeney was treated as mentally ill by the courts. They became early experts and advocates against the death penalty and for a more progressive version of the insanity plea.
More recently, Kate had found herself in a different situation, actively opposing unsupervised furloughs for her father’s killer, fearing for her family’s safety and the public’s. But, regardless of the challenges of death penalty issues (which became her life’s work at Murder Victims’ Families for Human Rights) and the complex mental health issues, there was no room for ambiguity in her family’s feelings about gun control. Or mine.
Chapter 11
Just a few weeks after my yelling match on the floor of the House, mental health parity got its first serious airing on the floor of the US Senate. It’s not that the idea of such equality of coverage for mental illness had never come up before in Congress, but this was a political turning point for the idea—and for the phrase “mental health parity” itself. It came in the form of a last-minute amendment to a health insurance bill my father was trying to get passed, which eventually became the Health Insurance Portability and Accountability Act (and created the infamous HIPAA regulations that so aggressively restrict access to patient information).
As soon as the Clinton healthcare act had died in 1994—and with it, the chances for equality for mental illness and addiction treatment to be part of a larger healthcare reform package that also prevented any preexisting conditions from affecting coverage—a handful of stand-alone strategies had been suggested and debated. Parity seemed like a pretty basic concept, but it actually wasn’t: there were a lot of possible moving parts, each of which came with its own economic and political price tag.
One of the biggest issues was what exactly would be covered by a parity law, and how this parity could be created and enforced. Would it cover only what the government called “serious mental illnesses” (a definition that was more limited in 1996 than it is today, including only schizophrenia, bipolar disorder, and the most disabling clinical depression)? Would parity cover what the government called “all mental illnesses”—which, in theory, included any condition listed in the DSM (a list that was different and somewhat more limited in 1996 than it is now)? Would parity include all addictions and substance use disorders (which, in 1996, some leading mental health advocates were still claiming were not actually diseases)? Would parity cover a menu of evidence-based treatments from different caregivers in different settings that worked for different patients—the equivalent of covering surgery, medication, outpatient physical therapy, inpatient rehab, and other treatments for a knee injury—or would it mostly be parity for generic psychopharmacology, a little short-term outpatient therapy, and maybe a few days in a hospital after a suicide attempt?
Would parity cover private insurance plans that already included mental health coverage? Would it mandate that all private insurance plans cover mental health, since some of them did not? Would it cover all federally funded health insurance—Medicare, Medicaid, Veterans Health Administration, federal employee coverage—and all publicly funded insurance at the state level?
And what would “parity” actually mean, once the law got beyond banning denial of coverage based on preexisting conditions, and disparate copays and lifetime caps for mental healthcare? How would the parity law remedy problems like the shortages in qualified caregivers in various parts of the country, and shortages of mental health beds and facilities for inpatient and outpatient care? If mental healthcare stopped being separate from all other medicine, how would a law force it to be better integrated into the practices of various specialists and generalists?
And would any of these changes actually lessen the stigma of mental health diagnoses and mental healthcare to the point where most of the people who needed help would get it—and once diagnosed and treated, would remain in treatment? Because, historically, no matter how effective treatments were and how much better they got, the majority of people refused to get, or stay in, care.
Given the deep political divides between the answers to these questions—made even deeper by a Republican-controlled Congress that had already shut down the federal government twice for a total of twenty-six days—it was especially significant that the mental health parity amendment was cosponsored by perhaps the two most diametrically opposed members of the Senate. On the Republican side there was card-carrying conservative Pete Domenici and on the Democratic side, card-carrying liberal Paul Wellstone from Minnesota—who I was getting to know because he was my neighbor in Justice Court, so we sometimes walked home together from work.
Domenici was already becoming well-known for his heroic public calls for increased research funding for the NIMH. Because his family’s advocacy grew out of his daughter’s struggle with schizoaffective disorder—which made anyone’s short list of the most “serious” mental illnesses—he tended to want the strongest possible parity for the smallest possible group of the most seriously ill and disabled patients. And he was completely against including substance use disorders in parity.
Wellstone was a well-known liberal on healthcare issues but had only recently begun speaking about the reason for his interest in mental health parity. In the 1950s, his older brother Stephen had been hospitalized repeatedly for mental illness, and his care had nearly bankrupted the family. He vividly recalled being eleven years old and visiting Stephen—who was then nineteen—at Western State Hospital in Staunton, Virginia, and realizing that the way patients were being treated was terribly wrong. He considered that the crystallizing experience of his life, which made him want to go into politics, so he could stop people struggling with mental illness from being “put into parentheses.” While Stephen had been originally diagnosed as suffering from schizophrenia—as almost all hospitalized patients were in the fifties—he was later rediagnosed with bipolar disorder and responded well to modern treatment with medication and supportive therapy. But he still had to struggle to function again and rejoin society, and he and his family were haunted by the blatant discrimination against him. Wellstone supported the broadest possible parity, including all mental illnesses and substance use disorders.
Between the two of them, they had built a bipartisan coalition of senators who had personal interests in mental illness and crafted an amendment. It was based on a bill they had proposed the year before, the Equitable Health Care for Severe Mental Illnesses Act, which had never made it out of conference. Their proposed amendment primarily impacted only larger employers with private insurance that already included mental healthcare, preventing them from putting annual or lifetime caps on care. The bill they proposed to amend just happened to be a health insurance reform act my father had cosponsored with Kansas Republican Nancy Kassebaum.
The amendment was notable in Washington because of the scene it caused on the floor of the Senate on the evening of April 18, 1996. In utter desperation to get their issue heard, several senators began pouring their hearts out concerning friends and family members devastated by mental illness.
Pete Domenici began:
Nobody is at fault because somebody has schizophrenia and acts differently and reasons differently. They are just as sick as your neighbor who has cancer. Yet only two percent of all individuals with mental illnesses are covered by insurance which provides benefits equal to the coverage for physical illnesses. . . . Through caps that are irresponsible but save money so insurance companies do it in their own self-interest, only two percent of Americans with mental illness are covered with the same degree of coverage as if they got tuberculosis or cancer instead of manic-depression or schizophrenia. You can walk down any street in urban America and you will find them. It is time to give these people access to care they need, and as you see them in urban America sleeping on grates and other things, you should realize that they probably started out as wonderful teenage children i
n some beautiful family. And when the costs got prohibitive and the behavior uncontrollable, they are abandoned.
Domenici yielded the floor to Wellstone, who spoke equally eloquently and, at the very end, personally. “I do not usually do this on the floor of the Senate,” he said, “but I would like to dedicate my remarks to my brother who has struggled with mental illness almost his whole life. He is doing great now.”
Alan Simpson, the Republican Senator from Wyoming, then got up and told about the suicide of his niece.
We did not get or understand the signals in time, and the signals were very clear as we all look back now out of sheer guilt and anguish. She was tough-minded, independent, loving, strong, and forceful. . . . She began to withdraw, and then she went into some religious and almost cultish activities, and she had a child. And that is a beautiful child. I know that child. . . . And after years of reaching out to us in her way and us not hearing and us not knowing, she one day decisively purchased a pistol and a few hours later purchased the ammunition and went to an isolated field, removed her shoes, sat in a crouched position . . . and blew her chest away.
She [had been] taking medication, and it was working. But then something, something unknown, entered her mind and her life and she decided not to take the medication—knowing what would happen if she did not—and then her tragic plan of ultimate rejection came to pass.
Simpson was followed by North Dakota Democrat Kent Conrad, who talked about a young woman who was the beloved receptionist at the state tax commissioner’s office when both he and his fellow senator Byron Dorgan had worked there. “She was a beautiful and vibrant young woman. She was somebody who absolutely lit up an office. One day, she just went off the deep end with a mental illness that none of us knew that she had. Pictures were speaking to her. She had all kinds of aberrant thoughts. It led to her institutionalization. It led to her attempting to take her own life. That was a young woman, because of a suicide attempt, who did enormous damage to herself from which she will never fully recover. That young woman had a mental illness, and that illness deserved to be treated like any other illness.”
A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Page 13