A Common Struggle: A Personal Journey Through the Past and Future of Mental Illness and Addiction Read online

  My parents were terribly worried, and everyone was calling them to say, “How awful, another son with a devastating illness.” And all the time I was thinking, This is great.

  This is something I wish for everyone who has a mental illness or addiction disorder.

  Not to have a tumor, obviously, but to have your illness taken as seriously and sympathetically as cancer. (Luckily, the surgeons had my tumor biopsied and it was benign.)

  And just to show how overwhelming and empowering that feeling was, I hobbled out of Mass General after three weeks in a hospital bed—walking with a cane and sporting a massive neck brace—on May 7, 1988. And in less than a month I was making plans to run for the Rhode Island state legislature, in the district where I was heading into my sophomore year of college.

  It was a part-time political job, paying $300 a year—and the incumbent, a five-term Democrat and Deputy Majority Leader, was a local funeral home director. But I was so high off the feeling of my health being taken seriously—and, in retrospect, while I hadn’t yet been diagnosed with bipolar disorder, I suspect this was somewhat manic behavior—that it all seemed quite logical. My older brother, Teddy, had decided he would not seek public office. So this was a way for me to do something that would really connect me with my dad—who I revered, and who I desperately wanted to respect me instead of just feeling sorry for me.

  There were 4,700 registered voters in the district where I went to college. My opponent and I each spent about $30,000 in campaign funds to woo them, and even after I put in close to $50,000 of my own money, I won by only 315 votes, 1,324 to 1,009.

  But it didn’t matter. I had joined the family business.

  Chapter 2

  When I was seventeen and a junior in high school, I got a letter around Thanksgiving from my father’s older sister Eunice Kennedy Shriver—as did every member of my generation of the family. The letter described the work of the Joseph P. Kennedy Jr. Foundation, which had been started in the 1940s to memorialize my father’s oldest brother, Joe Jr., who was lost in aerial combat in World War II. The foundation was about to celebrate its fortieth anniversary and Aunt Eunice basically suggested it was time that we young people start taking some interest in it. Not only did she want us to learn more about the foundation and its work, but she wanted to know what each of us thought about it—so her friend Lou Harris, creator of the Harris Poll, had volunteered to individually question each one of us young Kennedys, Shrivers, Smiths, and Lawfords about our “own policy concerns.”

  I’m not sure just how many policy concerns I had at seventeen. But as I look through all the stuff I still have from my teens, this letter—and the fact that I saved it—is probably the earliest inkling of where I would end up professionally. I have no recollection of what I told Lou Harris then, but I now have a much better understanding of the importance of the questions my aunt was posing to us.

  When the Joseph P. Kennedy Jr. Foundation was started in 1946, it was not specifically meant to fund work in healthcare. Joe Jr. had died in what now might be seen as one of the first military drone accidents. He and another pilot were flying a plane outfitted to be used as a radio-controlled unmanned dive bomber; on the way to its target in occupied northern France they were to arm the bombs, and then parachute to safety. Instead the bombs went off right after they were activated, and both pilots were killed instantly.

  The foundation memorializing him served several philanthropic roles during its first years before Eunice took control of its mission in the midfifties and began using its funds more systematically to help advocate for pediatric medicine, especially in improving the lives of children with intellectual disabilities—who were then referred to as “retarded” and, mostly, sent away to institutions. She was moved to do this because she could see how the care of pregnant women and infants needed dramatic improvement. But she was also inspired by the experience of her oldest sister, Rosemary—even though, at the time, much of that experience was a family secret and something of a medical mystery.

  Rosemary Kennedy was born during World War I with some form of developmental disability—it will never be completely clear which, because even the known facts about her case were gathered at a much more unsophisticated time in our understanding of the diagnosis and treatment of these conditions. Unlike most people with developmental disabilities, she was raised mostly at home with her family, just with a lot of extra help. But in her late teens and early twenties, her behavior changed and became more extreme—which was baffling to doctors of the day, who did not know, as we now do, that people born with developmental disabilities can still develop psychiatric disease at the same age everyone else normally does.

  In 1941, Rosemary’s father, my grandfather Joseph P. Kennedy Sr., made one of the most regrettable—and most resonantly regretted—decisions in the history of diagnosing, treating, and researching diseases of the brain and mind. He chose to have her treated with a terribly extreme new psychiatric procedure, a lobotomy. Instead of improving her life, this ill-conceived procedure dramatically worsened the brain damage she had experienced at birth, and she was never the same. She was cared for in a convent school in Wisconsin and, by my guilt-ridden grandfather’s edict, wasn’t seen at family events for years.

  In the mid-fifties, Aunt Eunice decided to use the Kennedy Foundation to explore what could be done to help those born with developmental disabilities, as well as improve prenatal and postnatal care in the hope of preventing brain damage. Her goal, to a large degree, was to wrestle the care of those with developmental disabilities away from psychiatrists.

  Psychiatry represented to her both the unresponsive medical establishment and the eugenics movement of the not-so-distant past. The psychiatrists also didn’t do a good enough job differentiating the needs of those born with developmental disabilities from those who developed psychiatric illness later in life—usually starting in their teens, when mood disorders and psychotic disorders normally first manifest themselves. (In their defense, there was a lot we didn’t know then about either area of medicine—and those who treated both of these deeply stigmatized groups were also, in the medical community, pretty stigmatized themselves.)

  Psychiatrists generally oversaw the large state institutions where both people with untreatable mental illnesses and those with developmental disabilities were warehoused if their families couldn’t afford a private institution. While many in these overcrowded, underfunded institutions didn’t belong there, it was for different reasons. Those with intellectual disabilities primarily needed care because their challenges came at birth and were not believed to be treatable or improvable; many of them could have already been living at home, but their families were too stigmatized. Those with mental illness had diseases that generally began manifesting during their teen years, sometimes responding to treatment, sometimes not, and sometimes improving on their own in natural (if unpredictable) cycles—as long as the patients didn’t harm themselves while sickest. The available treatments were the same kind we have today, but just much more rudimentary, and often given at much higher doses than we now realize is necessary. There was talk therapy and there were medical treatments, including the earliest psychoactive medications (mostly tranquilizers but also the very earliest antidepressants and antipsychotics) and the earliest types of direct brain stimulation (electroconvulsive therapy and insulin shock therapy). And there was watchful waiting.

  The federal government was already paying attention to mental illness, having passed a law in 1955—cosponsored by young Senator John F. Kennedy—establishing the Joint Commission on Mental Illness and Mental Health. But, as Aunt Eunice often pointed out, there was “nothing” for people with intellectual disabilities. She would have to create something herself.

  The first action of the Kennedy Foundation was to offer grants that would seed the creation of separate offices—state by state, because that’s how healthcare is largely delivered—to improve the care and treat
ment of children who grew up like Rosemary. Eunice worked on this state strategy for a number of years before her brother Jack was elected President in 1960, and she began encouraging him to create federal legislation to help people with intellectual disabilities. A year later, just before Christmas of 1961, my grandfather had a debilitating stroke, which, among its other impacts, freed his wife, Rose, my grandmother, and her children to begin interacting more overtly with Rosemary and talking more openly about her. It is no coincidence that in the summer of 1962, Eunice created a small summer camp for children with disabilities in her backyard in Potomac, Maryland—which is what eventually grew into the Special Olympics.

  That same summer, she wrote an article for the Saturday Evening Post revealing for the first time that her sister Rosemary, who was about to turn forty-four, was “mentally retarded.” She then began using her position with the Kennedy Foundation even more aggressively to fund such summer camps all over the country, in schools, parks, and other recreation facilities. And she used what turned out to be the last year of her brother’s presidency to lobby him to make bold legislation to help all the “special” children and adults who, largely, were living in institutions.

  That article Aunt Eunice wrote about Aunt Rosemary also represented the beginning of a tradition of which I am now a part: the Kennedy family sharing its own health concerns to encourage and personalize medical advocacy. That tradition continued the next summer when Jackie Kennedy gave birth to a son who was five and a half weeks premature and died after only thirty-nine hours. The White House was quite open about the challenges of that son, Patrick Bouvier Kennedy, and those of the First Lady after the loss, calling international attention to the challenges of premature births, infant respiratory issues, and postpartum health for mothers.

  In 1963, President Kennedy finally decided it was time to reverse “our approach to mental affliction.” His goal was to respond to all the lobbying from his sister Eunice by creating new institutions and funding for the care of the “retarded,” and also to reform existing mental healthcare, largely in response to a sweeping study and book-length report from the Joint Commission on Mental Illness and Health, which had taken over five years and was published just after he took office. Both efforts were deeply important and long overdue. In retrospect, combining them may not have been ideal.

  In February of 1963, JFK delivered his landmark “Special Message to the Congress on Mental Illness and Mental Retardation,” which represented the first time that either of these medical challenges ever had been discussed in public by a world leader. He called for “a new approach to mental illness and mental retardation” and said when that approach was “carried out, reliance on the cold mercy of custodial isolation will be supplanted by the open warmth of community concern and capability. . . . We cannot afford to postpone any longer a reversal in our approach to mental affliction.” Mental illnesses were covered first in the speech, in part because there were three times as many patients institutionalized for those diseases, and a much larger treatment bureaucracy already in place and desperately in need of reform.

  The resulting legislation, however, was more focused on addressing the smaller, but overall needier, group of children born with brain-related birth defects. On October 24, the President signed the Maternal and Child Health and Mental Retardation Planning Amendment to the Social Security Act, which focused on improving maternity and infant care, and preventing developmental disabilities.

  And on October 31, he signed what was now called the Bill for the Construction of Mental Retardation Facilities and Community Mental Health Centers.

  His rhetoric on signing the second bill was amazingly powerful and still resounds today:

  It was said, in an earlier age, that the mind of a man is a far country which can neither be approached nor explored. But, today, under present conditions of scientific achievement, it will be possible for a nation as rich in human and material resources as ours to make the remote reaches of the mind accessible. The mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities.

  Three weeks after that speech, my uncle, President Kennedy, was assassinated.

  While we now call that second bill the Community Mental Health Act, you can see it really wasn’t that at all. It was primarily a well-thought-out plan to change the lives of those with intellectual disabilities, to which was added a small but significant number of changes culled from a much larger, more ambitious mental health reform plan. In the President’s defense, at that time it was harder to know the difference between intellectual disability and severe mental illness, and people with one or the other (or both) were all being warehoused in the same shamefully run institutions.

  My Uncle Bobby loudly referred to them as “snake pits,” which certainly fit in with the rhetoric of the day. Ken Kesey’s One Flew Over the Cuckoo’s Nest—which showed how a sane man pretending to be crazy to avoid jail was harshly treated and, eventually, lobotomized—had just recently been published, and two weeks after the Community Mental Health Act was signed, a theatrical version of the book opened on Broadway with Kirk Douglas starring as Randle McMurphy.

  The main strategy of the bill was to move those stuck in large, often outdated and cruel facilities into smaller, more community-based centers (and, in some cases, back home) while dramatically increasing research into prevention, treatment, and cures. This impacted the two groups of patients quite differently. Many people with intellectual disabilities were able to live at home and they were all fully covered for their care and their needs for the rest of their lives—especially after Medicare and Medicaid were established in 1965. They were viewed as not being responsible for their disabilities and there was a government-supported process in place to try to care for them, destigmatize their situation, and prevent the injury, disease, or problem in the brain that caused their disabilities.

  For those suffering from mental illness and/or addiction, however, something different happened. The act led to the closing of many of the large institutions where these illnesses were treated but did not provide the funding for them to ever be replaced with smaller community health centers. In fact, we actually still can’t build modern psychiatric facilities today because of a clause in the 1965 Medicaid law: the dreaded “IMD exclusion.” The exclusion was established to help hasten the emptying of outdated facilities by prohibiting hospitals where more than 51 percent of the patients are mentally ill from getting the new Medicaid reimbursements. Today this outdated law just makes modern inpatient facilities all but economically unfeasible, leaving the nation with a serious shortage of hospital beds for patients with mental illness. (This is also a big part of the reason why so many Americans with mental illness are now housed in prisons.)

  The new laws also helped lead to the creation of a separate but unequal reimbursement system for care. Not only were these illnesses not viewed as disabilities, they weren’t even viewed as “real” illnesses. This helped create a situation where even though the science of the treatment and genetics of mental illness improved, the way it was viewed by society and covered by insurance did not keep up.

  Now, this bill certainly did not invent these problems. The prejudice against mental illness and addiction is as old as medical care itself. But while JFK’s act made major progress in stopping the stigma against those with intellectual disabilities, it did little to stop the stigma against mental illness and substance use disorders. By separating out those with intellectual disabilities, people with mental illness and addictions were actually more easily labeled as mostly responsible for their own problems and willfully going out of their way to not solve them.

  My aunt changed the world, and she showed us all how to employ laser focus and relentlessness—and the Kennedy name—to herd cats and convene the unconvenable. But she also taught us that even the most well-meaning and powerful advocacy can later turn out to have unpredictable results. />
  Chapter 3

  I grew up in a household where both of my parents had mental health issues. My mother inherited her own mother’s dark disabling alcoholism. And my father . . . well, I can now see my father suffered from PTSD, and because he denied himself treatment—and had chronic pain from the back injury he received in a small plane crash in 1964 when he was a very young Senator—he sometimes self-medicated in other ways.

  My father would have been President of the United States if there had been progressive mental health treatment for him—someone saying, “Since two of your brothers were shot and killed, maybe you need to get support and services, because you suffered trauma.” But no one could say that to my father, who had lost two siblings when he was a child and then had to survive the unthinkable: having not just one brother murdered in front of his eyes, and having it repeated over and over on television, but then having a second brother murdered, watching that repeated over and over, and wondering if he was next. That is psychological trauma beyond comprehension.

  The difference between my parents was that my dad was much more highly functional with his illnesses. My mom was just the opposite. She spent much of my childhood in her room, doing little but drinking and surviving, as her mother did before her. Occasionally she would come out and try her best to be attentive, like driving us somewhere. And when she swerved slowly down the street, my brother, sister, and I would just giggle because we didn’t know what else to do. Sometimes she would disappear to go back to rehab, for weeks or months at a time. We didn’t know much about it except for the obligatory family counseling session we had to go to. She did have a sustained period of wonderful sobriety during the late seventies and early eighties—during which I got to know a very different woman and mother than the one I grew up with, and we were able to travel together to the Holy Land, to London, and to Rome. But my mother has spent too much of her life harshly impaired by the cycles of disease.