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!

2 comments:

  1. who couldn't discover anybody to listen to their stories. At that point I composed a book, The Price of Silence, letting some know of those families' stories, depicting the various hindrances to care that we confront, and distinguishing arrangements that as of now exist in a few groups

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    ReplyDelete

I regret that I don't have time to respond to comments on this blog, but I really appreciate your insights. As we speak up for our kids, we can end the stigma of mental illness.