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Steve Luxenberg's Keynote Speech, "Losing an Identity, Finding a Voice"

NAMI 5th Annual Gala Awards Dinner
Oct. 14, 2009

©Steve Luxenberg, 2009.
Reprinted by permission.

(Bio: Steve Luxenberg, an associate editor at The Washington Post, has worked for more than 30 years as a newspaper editor and reporter. Post reporters working with Steve have won several major reporting awards, including two Pulitzer Prizes for explanatory journalism. Steve's new nonfiction book, Annie's Ghosts: A Journey Into a Family Secret-part detective story, part social history, part memoir-revolves around his mother's decision to hide the existence of a disabled sister. Employing his skills as a journalist while struggling to maintain his empathy as a son, Steve pieces together the story of his mother's motivations, his aunt Annie's unknown life, and the times in which the two sisters lived. One review described Annie's Ghosts as "beautifully complex, raw and revealing." The book has been featured on NPR's All Things Considered and the Diane Rehm Show.)

Suzanne Malveaux, CNN's White House correspondent, served as the emcee for the dinner. She introduced Steve.

Thanks, Suzanne, for that kind introduction. If it's true that it's better to quit while you're ahead, perhaps I should wish you all good night now.

Thanks, also, to NAMI for inviting me to speak, and especially for putting me before Jessica Phillips. Once you hear her sing, you'll understand why I would rather open for her than follow her.

Before I dive into my talk, two announcements.

Cell phones, BlackBerries, other electronic devices. . . . No, no, please don't switch them off. It's absolutely fine with me if you call your friends, your family, your parents, and tell them, hey, I'm listening to this terrific author, he wrote a book about his mom, about how she hid the existence of a mentally disabled sister, how her silence affected her life and the lives of those around her. It's called Annie's Ghosts: A Journey Into a Family Secret. It's been featured on NPR. Suzanne, maybe you want to call CNN….?

It's getting late for a weeknight, and I'm worried about an outbreak of GDOD, better known in Washington circles as "Gala Dinner Overload Disorder." According to the DSM-IV, it's a disorder characterized by fatigue, eye glaze, yawning and, ultimately, an urge to get up and leave. The good news: If you're experiencing any of these symptoms, we have plenty of guests here who can give you immediate treatment.

***

It was fascinating, and humbling, to meet people tonight who are much more knowledgeable than I am about mental health issues, and to listen to the description of Dr. Carpenter's work. But it was familiar, too. I heard echoes of the same issues that I encountered in researching Annie's Ghosts-the pressures that families experience when confronted by mental illness, the mysteries of the mind that still baffle scientists, the continuing nature of stigma - all these are issues that faced previous generations, that faced my mom's family in the 1940s.

That was a time, not so long ago, when most mentally ill patients lost their voices, and their identities, when they entered the huge asylums that dominated mental health treatment during the first half of the 20th century. I'm going to talk a bit about that history, and why it matters now.

I'm also going to talk a bit about stigma, and why I feel that the legislative trend toward greater and greater privacy is having the effect, perhaps unintended but undeniable all the same, of eroding the gains that organizations such as this one have made in reducing the shame that has long surrounded mental illness.

Privacy laws regarding medical records have done something quite rare-they have conferred rights upon the dead, rights with few limits, and these rights have created a serious imbalance between our understandable desire for privacy and our desire to be able to tell our own history.

I'm not usually in the habit of quoting German philosophers, but there's a quote from Hegel that nicely captures the issue. "Genuine tragedies in the world are not conflicts between right and wrong," Hegel once observed. "They are conflicts between two rights."

Like many long-time journalists, I have had more than a little experience in dealing with recalcitrant government bureaucracies. I wasn't deterred by the high walls that often exist between the governed and their government. But that's not true for most people. When they encounter hard-to-understand restrictions and stone-faced officials, they usually retreat. Some-and I've interviewed these people-never try at all.

For now, we have chosen to exalt privacy over history. This can't last. In coming years, as researchers learn more and more about the genetic and neurological basis for physical and mental illnesses, governments will come under more pressure from families who will want clearer and less complicated access to their ancestors' records.

We cannot be afraid to tell these stories, to write these histories, to reveal our pasts. My mom was afraid of her past. Until I was in my forties, I had no reason to question the facts of her biography. I knew that her name was Beth, that she was an only child, and that she had raised me to always tell the truth.

Well, she wasn't born Beth, she wasn't an only child and her relationship with the truth turned out to be a complicated one.

Her secret first emerged on an ordinary April afternoon in 1995, when a social worker called my sister out of the blue, and asked: "Did your mother have a sister?" Like everyone else my mom met, this social worker had heard her stories about growing up as an only child.

What Mom said, on that April day, was largely untrue, yet another fiction designed to deceive. She was in the emergency, being treated yet again for shortness of breath related to her emphysema, the consequence of a six-decade love affair with the cigarette. Her doctors, concerned about her anxiety level, asked a psychiatrist to talk with her, to get a sense of what was going on.

At this point in 1995, my mom was 78 years old, still working, still tooling down one of Detroit's many expressways, still living alone, as she had done since my dad's death in 1980. She distrusted psychiatrists, and psychiatry in general. She would never have gone to one on her own.

The psychiatrist was running through his routine questions. He asked about her family history and, inexplicably, Mom mentioned a sister. She didn't say, "Oh, I have this secret." She merely answered his question. "I had a disabled sister," she told him. "She was institutionalized when she was two, and I was four. I don't know what happened to her."

Later, when the social worker read the psychiatrist's notes, she was puzzled. That's when she phoned to ask her startling question: "Did your mom have a sister?" Amazingly enough-remember, I'm a long-time investigative reporter-I decided not to ask my mom about this. She was too ill at the time, and I was too much her son. I believed her when she said her sister was two. I believed her when she said she didn't know her sister's fate. The journalist should have known better. The son did not.

Secrets, I write in Annie's Ghosts, have a way of working free of their keepers. Six months after my mom's death, in March of 2000, we received a forwarded letter from the cemetery where our grandparents are buried. It was addressed to my mom, an annual solicitation, asking about planting flowers for the spring. But instead of two graves, it listed three.

Now the secret had a name: Annie.

***

At the cemetery office, records showed that Annie had died in August 1972. My mom had arranged the burial. So much for not knowing what had happened to her sister.

The cemetery records also revealed that a mental hospital had reported Annie's death. Curious, I called the Michigan Department of Community Health in Lansing, and ended up in the lap of a woman who sits at this busy intersection between the public and the government.

I told her what I had just learned. I said I wanted to find out something about my aunt's time in the institution. She replied: "You and 5,000 other families."

This threw me. I was well aware that asylums had once held thousands of people, but deinstitutionalization had ended that era more than 20 years earlier. Why would that many people being seeking such information now?

She replied, "I get dozens of calls a month from people like you, who have just discovered they had a relative they never knew about."

A bit more reporting-well, a lot more reporting-produced one more mind-altering fact: My mom wasn't four when Annie was institutionalized. She was 23. Annie was 21. They had grown up together.

All the stories I had heard from my mom about her life as an only child, all of them exploded in that moment. Now the journalist reasserted himself. I wanted to know: What had caused my mom to hide her sister's existence? The easy answer, one that I often heard as I did my research, was shame. But shame isn't where the story ends. It's only where it begins.

Remember, Mom and Annie had grown up together. Everyone in the old neighborhood knew Annie, knew about the girl born with mild retardation and a deformed leg, the leg that could never be straightened, the leg that had been amputated when Annie was 17, replaced by a wooden one that never fit very well.

My mom was in her mid-twenties when she made Annie into a secret. Something must have caused her to do that. What was it?

Let me pause here for an aside. When I talk about this story before a room of journalists, I tell them that I have lived every reporter's dream: I have investigated my own mother. But when I talk to mental health professionals, I tell them that I'm every therapist's dream: I'm the son who has investigated his own mother.

I should stress here that it's all too easy to define my mom by her secret. That was just one dimension of her life. She was a kind and generous person. Her decision to hide her sister's very existence seemed so much out of character that it heightened my desire to know what had motivated her to do it. I wanted to understand, to stand in her shoes, not to pass judgment.

While my mom was inventing a new identity, Annie was losing her. In April 1940, the day before her 21st birthday, Annie went into a county-run psychiatric institution called Eloise, outside of Detroit. She never left. Her temporary, involuntary commitment became permanent, and Eloise became her home. She wasn't allowed to attend her own hearing, but when served the court papers, she said she wasn't insane. Under state law at the time, she was an "inmate," only eligible to leave if she were "paroled."

In the months before her admission to Eloise, she spent most nights moaning and screaming. She cowered when anyone other than her family entered the apartment, and frequently refused to eat or bathe.

My grandmother visited Annie at Eloise until the early 1960s, when age and illness got in the way. According to a hospital report just before Annie's death in 1972, she "had not had visitors in many years."

Annie's life at Eloise spanned two very different eras in the treatment of mental illness. When she entered Eloise in 1940, it had more than 10,000 residents, half psychiatric and half infirm or homeless. It was larger than many small towns. It had 75 buildings, including one with more floor space than the U.S. Capitol. In 1940, Eloise's herd of cows sent 120,000 gallons of milk to Eloise's state-of-the-art pasteurizing plant. Its piggery put 110,000 pounds of pork on Eloise's tables. Its ovens, in the largest institutional kitchen in the country, could turn out 1,800 loaves of bread an hour.

But the hospital could not cure or help most of its patients. The majority of them stayed there for years, under Michigan's standard of care in that era, which was to provide "treatment and care" for the state's "defectives," another term embedded in state law at the time.

By 1955, the nation reached its peak population of institutionalized patients: 550,000. Think about that number for a moment. More than half a million people. Over the past 50 years, the nation's population has doubled. Logic tells us, therefore, that there should be more than one million institutionalized patients now. But there are fewer than 50,000.

Half a million in 1955. 50,000 now. Where did they go?

We know a part of the story. First, there was a medical revolution, with the introduction of medications that allowed many patients to be treated at home. Then a change in the standard for involuntary commitment. Out went "treatment and care," replaced by a "danger to himself or herself, or to others." Then, a legal assault. In 1971, during Annie's final year at Eloise, a lawsuit was filed against the hospital. It alleged that the very foundations of the Michigan mental health system were unconstitutional. In 1974, a panel of three federal judges essentially agreed.

After more than a century of building up, the system began to tear itself down. And the patients? Some went without treatment, to the streets. Some are in jails, on segregated floors. The pendulum has swung in the other direction, and we still haven't gotten the balance right. This is our challenge now, and how we meet that challenge is one way we will be judged, 50 years from now.

***

These revolutions did something else, something unfair, or at least unhelpful.

They cemented an image. We all know this image: The warehoused patient. The abused patient. The medicated patient, the patient who sits on the ward, unable to relate to others. It's also the image we have seen in countless books and movies.

Like many images that have become fixed in the public's mind, this one begins in fact. There were patients who were abused. There were patients who were overmedicated. There were patients who were warehoused.

But to put forth only that image, to describe those institutions as scary, spooky places, obscures the history of mental health treatment in America. Worse, it distorts that history. It makes it hard to understand where we have come from, and even harder to see where we need to go.

It is a mistake to believe that we, today, are so much smarter about mental illness than the people who came before, that we are the modernists and that our predecessors were the barbarians. Every generation-every generation-believes that it is doing better than the last. Every generation thinks of itself as making progress.

Now think about this: In 1949, that generation awarded the Nobel Prize to the Portuguese neurologist who developed the first lobotomy technique. Today, we regard the lobotomy with contempt, if not horror. What will successive generations say about us, in the year 2059?

***

In many ways, the future always echoes the past. In researching Annie's Ghosts, I read through the files of Gov. Harry Kelly of Michigan, who arrived in office in 1943, during the height of overcrowding at his state's mental hospitals. It became so bad that at Eloise and other institutions, patients were sleeping on the floor.

Kelly learned the hard way what every governor discovers: Mental health treatment is expensive, and huge mental hospitals are particularly expensive. Governors do not run for office promising to fix the mental health system. But all of them eventually discover the inescapable fact that mental health treatment can be done better or it can be done worse, but it cannot be done cheaply.

***

For my final stirring of the pot, I want to return to this conflict between privacy and history. HHLast week, I received an email from a woman who wanted my help in finding records on her grandmother's institutionalization. "There is nobody alive today, anywhere on the planet, who knew my great grandmother," she wrote. "But state law makes it almost impossible to legally access medical records for long-deceased ancestors."

Think about it: Doesn't this shroud of secrecy merely serve to extend the very stigma that we're working so hard to eliminate? By putting medical records of the long deceased off limits, aren't we saying that there's something about mental illness that needs to be hidden, forever? The taboo cannot die if we nourish this sort of thinking.

I have witnessed the pain that silence can cause. In 1995, after that trip to the emergency room, my mom's anxiety level reached new heights. She was up most nights, moaning and groaning, but couldn't say what was wrong. She wasn't eating much, or taking care of herself. That psychiatrist concluded that she was suffering from depression, and he wanted to try a medication that had a slight risk of respiratory arrest. With my mom's emphysema condition, he didn't feel comfortable treating her at home. He asked her to spend two weeks in a geriatric psychiatric ward, where she could be monitored to see how she tolerated the medication.

She agreed. But after one night on the ward, surrounded by dementia patients, unable to do her beloved crossword puzzles because she had to surrender her pencils upon admission, she changed her mind.

I will never forget the scene. She stood in the middle of the ward's day room, begging, cajoling, pleading with me to take her home. "I can't stay here, Steven," she said, draping herself around my shoulders. "You don't understand."

I didn't understand. I didn't know that Annie she had spent 31 years in a psychiatric institution. I didn't know that my mom feared that she was becoming her sister. But this I do know: At that moment in 1995, it was in my mom's best interest to reveal her secret, even if all she was doing was using it as a weapon to persuade me to take her home.

Yet, she could not do it. She no longer controlled her secret. The secret controlled her. That is the danger of silence and secrecy.

***

I want to close by coming back to Annie, and to my grandparents. Their story is also the story of what happened to thousands of American families in that era. After Annie's leg was amputated, my grandparents, who never mastered English and never truly assimilated, found themselves overwhelmed by Annie's increasingly erratic behavior.

My grandparents did not know what to do. "They were all going crazy," the record reports. A neurologist told them to have Annie committed, and faced with the same pressures and uncertainties that bedevil so many immigrant families today, they felt both guilty and grateful to have a system willing to take their troubled daughter.

What would happen to someone like Annie now? A lot, I'm told. Today, her deformed leg would be recognized as both a physical and mental problem, requiring counseling along with the casts and braces that dominated her first 17 years.

I would like to believe that this earlier intervention would have eased Annie's way into the independent life that she craved. Perhaps she could have lived in a group home, held a job, attained some self-sufficiency instead of becoming, as one psychiatrist put it, "a custodial patient"-in part because there few jobs for women in her day, and none for women with her disabilities.

I would like to think that, today, Annie would be a shining example of the ways in which this generation IS doing better than the ones that came before.

Thank you. You're a great audience. Enjoy the rest of the evening.

©Steve Luxenberg, 2009. More information on Annie's Ghosts can be found at Steve's website, steveluxenberg.com.


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