Tuesday, January 27, 2015

The Anarchist Soccer Mom Goes to Washington

I hope Congress can give themselves a facelift and pass mental
health reform legislation that will help children and families!
Lessons in Speaking Up—and Listening

I’m a mom. What that means for me, as it means for so many moms, is that I rarely think of myself first. When I have to choose between hearing the President of the United States speak in my hometown or picking up my kids from school, I pick up my kids. When I’m cooking dinner, I fix their favorite canned tuna and white rice instead of the lamb curry vindaloo and brown rice I would prefer to eat. Rather than spending money on spa treatments for me, I buy soccer camps or ice skating lessons for them.

But this week, I did something all for me. I bought a last minute plane ticket from Boise, Idaho to Washington, D.C. and flew into the outer edges of Winter Storm Juno to attend the presentation of the well-deserved Treatment Advocacy Center E.F. Torrey Award to Representative Tim Murphy (R-PA), a man I and many other families of children with mental illness view as a hero.

Two years ago, in a gut-wrenching response to the Newtown tragedy, I told our family’s painful story on my formerly anonymous blog. My essay was picked up by Boise State University’s The Blue Review and retitled as “I Am Adam Lanza’s Mother” (thanks, @paleomedia). Overnight, I became an accidental advocate for mental illness, speaking up for families and children everywhere who could not find anyone to listen to their stories. Then I wrote a book, The Price of Silence, telling some of those families’ stories, describing the numerous barriers to care that we face, and identifying solutions that already exist in some communities.

Now, it seems that lots of people are talking about mental illness, and that’s a good thing. But I wonder if people are listening.

Every day, there’s another tragedy in my Twitter feed: a father (or mother) tosses a child from a bridge, a mother attempts to kill herchildren, an estranged boyfriend kills a woman and her daughter, a police officer shoots a 17-year old girl. Every day, hundreds of thousands of people with mental illness suffer on the streets while millions more languish in prison. Meanwhile, states slash mental health budgets, and families continue to live onthe brink, as they did 15 years ago.

Today in his acceptance speech, I heard Representative Murphy offer, once again, a vision of hope. He talked about the need for better options, from early intervention to peer support to assisted outpatient treatment that can keep people with serious mental illness in the community and out of prison. As National Institute of Mental Health Director Thomas Insel and American Psychiatric Association President Paul Summergrad looked on, Representative Murphy encouraged research into new treatments that can help people with serious mental illness live productive, happy lives. He talked about ending discriminatory regulations that prevent people with mental illness from seeing a physical doctor and a mental health specialist on the same day and about expanded inpatient treatment options (instead of jail) for those who desperately need them.

I have to admit that one thing made me especially glad: in discussing his proposed new legislation, it seems like Representative Murphy is listening. And that’s important. But has one advocate noted, the voices of people who have serious mental illness are important too.

How do we hear the voices that serious mental illness has silenced? How do we ensure that we do not merely “bring back the asylums,” as one recent provocative JAMA article proposed, but that we create comprehensive services for individuals, families, and communities?

The word “advocate” means to speak up for something you believe in. But sometimes, advocacy also means respectfully listening to people who disagree with you. That’s a lesson our current Congress needs to learn. I hope that the Capitol’s denizens can repair their rifts (as the building itself gets a facelift) during this next session. It has become very easy in this world of fast information to tune out voices that disagree. But as a scholar and as an advocate, I prefer to surround myself with the voices of people who think about these complex problems in different ways. I do not feel threatened by other advocates who see these problems—and their solutions—differently than I do.

But one thing I think we all agree on is this: the current mental health care system is broken. We see the proof in our suicide and incarceration rates. Barriers to mental health care—however you define it—are massive and omnipresent. As one of my opposition-minded friends noted, whatever you think of Representative Murphy’s proposed legislation, at least he got us all talking about the problem. No bill, however well-intentioned, is ever perfect. But I applaud Representative Murphy for rising once again to the challenge of bringing our different voices together in a clarion call for change and hope. Let 2015 be the year we can listen to each other—and by listening, learn to help each other and those among us who suffer most.

P.S. Thanks to a supportive and amazing spouse who got the kids to school, fixed their dinner, and supported me in this once-in-a-lifetime opportunity. Love you, Babe!

Monday, January 19, 2015

5 Reasons I Wish We Would Stop Talking about "Recovery" for Serious Mental Illness

And the word I wish we would use instead

My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.

Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 

  1. Not everyone recovers. The word "recovery" has become central to mental healthcare, from the top down. In fact, the Substance Abuse and Mental Health Services Administration's stated mission is that "People recover." With serious mental illness, that's not true. People recover from head colds. They recover from chicken pox. They recover from situational depression. They even recover from trauma. But some diseases are lifelong. Like diabetes, or Parkinson's disease, or multiple sclerosis, serious mental illness is a lifelong, chronic health condition.
  2. Recovery and its partner phrase, behavioral health, imply that mental illness is a choice. Mental illness is not a choice or a character flaw. The focus on "behavioral health" unintentionally stigmatizes the very people that SAMHSA is meant to help: those with serious mental illness.
  3. The word "recovery" suggests that people need to return to a "normal" state, rather than embrace their differences. What does a person with bipolar disorder or autism need to "recover" from? When people realize they are not their diagnoses, they can start to find things that actually work to help them live successful and productive lives. That's hope, not recovery.
  4. The concept of recovery increases stigma, both within and outside the mental health community. Again, if people recover, why aren't you recovering? It must be a choice you are making, or something you're doing wrong. Some people tell you the medications you take are preventing you from recovery. Others tell you that your choice to stop medication is preventing you from recovery. Who is right? Hope is a universal concept that embraces a wide range of possibilities. Recovery seems dependent on a prescribed set of treatments that may not work for everyone.
  5. Recovery is an unrealistic standard for any chronic illness, including mental illness. We would never apply the blanket expectation of recovery to any other chronic illness or disability. With cancer and autoimmune disorders, we use the term "remission" to describe a life-threatening systemic illness that with luck and treatment has been stopped in its tracks. With other chronic illnesses like diabetes, we talk about managing the illness. But with mental illness, we expect people to "choose" recovery, even when they are experiencing psychosis, or when their disease steals their ability to make rational choices.

Behavioral health is an important concept for everyone. We should all focus on our behavioral health: on diet, exercise, mindfulness, good sleep habits. But behavioral health is not mental illness. Mental illness is physical illness. For people with serious mental illness, behavioral health alone will not "fix" or "cure" the chronic condition, and for us to expect otherwise is unrealistic and cruel. We need to focus on effective treatments, not inaccurate judgments about what we "believe" or "feel" mental illness is. It's a very real health challenge, with real and sometimes devastating consequences for those who live with it and their families. 

Let's keep talking about behavioral health for everyone. But let's stop talking about recovery for serious mental illness and start celebrating people whose brain disorders cause them to live with health challenges comparable to those experienced by cancer patients. The word we need, in the face of so much loss, is hope. Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.

Thursday, January 15, 2015

A Modest Apology

Three suggestions for kinder, gentler, more accurate social media posts

Wise words from a man who never said them.
Did you know James Franco is dead? Or that Idaho Governor Butch Otter thinks poor people are genetically inferior? Or that British author Jonathan Swift thinks the solution to world hunger is to eat babies? None of these stories is true, but the first two fake articles from a satirical content producer called City World News made the Internet rounds in the past few weeks and baited more than a few readers. I was one of them. I made the very public and easily avoidable mistake of believing (and worse, tweeting) the story about Governor Otter.

Satire has a long and colorful history, one that has been particularly prominent in the discussion of the tragic terrorist attack on Charlie Hebdo. While hardly anyone would defend shooting cartoonists, for a surprising number of people, the answer to the question, “Can’t you take a joke?” seems to be “no.” In the case of Governor Otter, I didn’t see the satire, perhaps because I spend a significant portion of my time trying to defend the rights of people that society just doesn’t care about. Many of the real news stories that cross my Twitter feed every day—people with mental illness shot and killed by police, or dying in solitary confinement, or being refused treatment in emergency rooms, or facing the death penalty for actions that were a result of their illness—are true.

Anyway, I screwed up. It was mea culpa, and a few of my friends very kindly pointed out my mistake. But one friend was a little less kind. She wrote: “People who blindly promote satire as truth risk diminishing their own validity.” 

At first, I thought her comment was a little harsh. I mean, I work full time, take care of four kids, and in my so-called “spare” time, I’m buried in dissertation research. You know, too busy to check my sources, right?

Wrong. My friend was right. And the thing is, validity and credibility really matter to me. So here are three suggestions I’ve come up with for myself to ensure that going forward, I tweet more responsibly.

  1. Don’t send late night tweets. When I read the Otter story, it was at the end of a long day. Work was intense. The kids were fun—but exhausting. It’s entirely possible that I was unwinding with a glass of cabernet when I read the outrageous “article” I retweeted without checking my source. I should have turned the phone off when I got home and enjoyed a good book instead. Lesson learned: No more late night tweets.
  2. Always check your sources. As Abraham Lincoln famously did not say, “The problem with Internet quotes is that you can’t always depend on their accuracy.” www.snopes.com is my favorite source for fact-checking urban legends. Lesson learned: It takes ten seconds to check a story on Snopes. But if you tweet something that isn’t true, you may look like a fool on the Internet forever.
  3. Be charitable in correcting people who tweet inaccurate information. The challenge with information these days is that it’s moving so fast. My friend’s comment struck me as harsh—but it reminded me that I’ve made similar “You really should have checked your sources” comments in the past on other friends’ posts.  Lesson learned: You don’t always have to be right. Sometimes it’s okay to be kind—to yourself and to others.

We all make mistakes. And though I regret my inaccurate tweet, I don’t regret standing up for the rights of people who are treated unfairly. I’ll continue to tweet about social justice, while following my own advice about slowing down and checking my sources—and hopefully my followers will not feel that my validity and credibility are too tarnished by one mistake. 

(And with respect to Governor Otter and City World News, props to the person who got me to tweet a false story that points at a larger uglier truth! Jonathan Swift would be proud!).

Monday, January 12, 2015

Lost in Transition

The author in Budapest, 2007
I performed three Bartok folk songs yesterday. With the performance came this memory.

One rainy evening in early October 2007, on a winding residential street in Budapest, Hungary, I got lost. I pulled out my notebook, squinting at the greying street signs as I tried to decipher something about my location. “Utca,” I mumbled, looking at the hastily written glossary I had begun building the day before: “Alma=apple. Gyorgy=health. Ut=street.” So “utca” must mean lane or little street.

I was illiterate, surrounded on all sides by new construction, hastily built stucco and plaster mansions for the nouveau riche who were coming to the formerly Soviet country in droves. I had a sudden vision of my body, violated and strangled and tossed by Russian gangsters in one of the many blue dumpsters that held construction-site waste. The gruesome vision quickened my pace as the rain stung my face and bare arms in the fast encroaching dusk.

I was afraid and alone. I felt in that moment that if I disappeared, no one would miss me.

My then-husband and I were in Budapest so he could compete in the Rubik’s Cube World Championships. We had taken a romantic Danube cruise earlier that afternoon, admiring the soaring span of the rebuilt Elizabeth Bridge, the reconstructed Parliament building, the bleached white Fisherman’s lookout.

“I want to go for a walk,” I told him after the cruise. I hoped—how foolish!—he would offer to come with me.

“Fine,” he said. “I’ll meet you back at the hotel.” I was too proud to ask for help, too proud to admit how lonely I felt. So I walked away.

Now, cold and unprepared, I shivered, seeing the spider cracks in our foundation, spreading and threatening to destroy the entire edifice of our marriage. Our perfect marriage.

My cheeks were wet, though I couldn’t tell the tears from the rain. I thought of Thomas Wolfe: “A stone, a leaf, an unfound door, of a stone, a leaf, a door.” Where was the door that would set me free?

Then I heard the violin music. It was Bartok, a simple folk song, with words I had learned as a child to sing in English: “Give to me the roses red, two I said! One alone would die forlorn, e’er the morn. Oh, no no! Off you go! Both of them are mine.”

I had stumbled in my peripatetic folly upon a music academy, and I listened in delight to the clean, crisp, rhythmically surprising songs of the Hungarian composer I’d studied when I was young. The music filled me with the joy of childhood discovery, the sense that things were possible.

I climbed the nearest hill, the music receding into the twilight. Searching for the lights that glittered along the Danube, I saw my way back.

When I entered the hotel lobby, drenched, shivering, my husband did not look up from his varicolored cube. I stumbled to our room and collapsed into a merciful, dreamless sleep. When he told me the next day, “You don’t love me like you used to,” I looked away, remembered Bartok’s roses.