Monday, January 6, 2014

Next Topic: Mental Health (Again)

Since Nick Kristhof was kind enough to ask

On Sunday, January 5, 2014, a heavy hitter weighed in on the topic of mental illness. Pulitzer Prize winning columnist Nick Kristof of the New York Times published an op-ed piece that asked a provocative and welcome question to the mental health community: what’s next?
“Mental health issues pose a greater risk to our well-being than, say, the Afghan Taliban or Al Qaeda terrorists, yet in polite society there is still something of a code of silence around these topics,” Kristhof noted. “Indeed, when the news media do cover mental health, we do so mostly in extreme situations such as a mass shooting.”
Why is that, exactly?

As the mother of a son with mental illness, I have a few thoughts on this subject.

I talked about the devastating effects of stigma for parents and children, including my own family, in my October 2013 TEDx San Antonio talk. It’s not just external; stigma is internal as well. Peer advocates metaphorically beat up parent advocates, as Marlowe Franklin, a close friend of Kelli Stapleton’s, notes in her recent blog post about peer advocate attacks. In case you don’t remember Kelli, she’s the mom who attempted to kill herself and her 12 year old daughter who has autism because she truly felt she had no other options.

Speaking of autism and internal stigma, the mental health community is not immune, with too many people acting as if bipolar disorder or schizophrenia are “bad” but a developmental disability like autism is “good.” Guess what, folks? A lot of times, developmental disabilities and mental illness are comorbid.

And you know what else? Lots of children with autism and/or mental illness beat their parents up, every single day in America. Here’s some advice about protecting yourself during an attack straight from “When a person is attacking you, you have the right to defend yourself. This is best achieved through defensive and blocking moves. If you have not attended a non-violent self-defense or crisis intervention program, I would highly recommend it.” The same fact sheet recommends calling the police when behavior escalates to violence.

In rare but still too common instances, children with mental illness grow up to be adults who attack or kill their parents, like Adam Lanza. Nancy Lanza was his first victim. More recently, Gus Deeds was unable to get treatment for his mental illness, attacked his father Virginia State Senator Creigh Deeds, and in every parent’s worst nightmare, took his own life.

Why can’t we all be on the same side here, the side that wants effective treatment for ourselves and our loved ones before another tragedy makes the media take notice of mental health again? And when will we agree that mental illness is a medical problem, one that requires evidence-based medical, not “feel-good,” solutions?

Stigma is inextricably linked to language. I have a simple suggestion for journalists that could go a long way toward improving the lives of those suffering with mental illness. Use people-first language. We never describe a child with cancer as “that cancerous child,” or an adult with heart disease as “that diseased woman.” But we say “autistic child” and “bipolar young person” all the time. We also use phrases like “bipolar” inappropriately, as this recent HuffPost article noted.

I personally think it’s time to adopt National Institute of Mental Health Director Thomas Insel’s suggestion and start calling mental illness what it is: “brain disease.” You can watch Dr. Insel’s TEDx talk here.

Something about the word “mental” conjures up the false notion of choice in mental illness. Perhaps it’s the word’s history. Mental comes from the Latin mens, which is closer to our conception of the word “mind” than the more organic word “brain.” Think of the legal phrase compos mentis, “of sound mind.” That’s the standard for determining whether a person can be guilty of a crime.

People with serious mental illness like schizophrenia or bipolar disorder do not “choose” their mental state. They have an organic brain disease, which can be treated and managed. But one in three people with schizophrenia attempts suicide, and one in ten completes suicide. That’s another new word for journalists. When we say that someone commits suicide, we are suggesting that their act is criminal. In most cases, suicide is a tragic, fatal, preventable outcome of an organic brain disease, not a criminal act, and not a rational choice made by a sound mind.

Considering our limited resources, it just makes sense to help those who are most in need. That was the rationale behind Representative Tim Murphy’s (R. PA) proposed “Helping Families in Mental Health Crisis Act.” Murphy, who practiced for years as a psychologist, is co-chair of the Mental Health Caucus and spent 2013 talking with stakeholders, including parents like me, about what we most needed to help our seriously ill children. The answer: access to medical care for the 11 million people who suffer from schizophrenia, bipolar disorder, or major depression. The bill seeks to accomplish this goal by empowering parents, increasing acute care beds, and promoting AOT (assisted outpatient treatment) for as many as 50 percent of schizophrenia sufferers whose symptoms include anosognosia, or lack of awareness of their illness.

The bill also addresses the critical shortage of child psychiatrists (one for every 7,000 children in the U.S.) with funds for telepsychiatry and seeks to reform SAMSHA by redirecting funds for community-based care toward evidence-based programs. The Wall Street Journal praised Murphy’s efforts, noting that “SAMHSA [the government agency charged with funding community mental health treatment] has little or no focus on medically driven care, and of its 537 full-time employees only two are physicians.”

Mental illness is truly a bipartisan issue, and in fact, we already have the resources to attack this problem that harms children, families, and communities. DJ Jaffe of, a nonpartisan resource, advocates for “spending smarter” by using funds for mental illness, not for mental health. This is an important distinction.

Deborah G., the mother of an adult son with schizophrenia, recently set off an Internet maelstrom when she criticized peer-driven care: “How confident would you be entrusting your daughter with a life threatening, cancerous brain tumor to a system of care that has developed policies and therapies influenced primarily by "peers"?” she asked. Her answer—and the answer of so many other parents in her situation—not too confident.

This is not to say that peers don’t play an important supportive role. Mom-peers like Deborah are invaluable resources for me when my son is going through a crisis. What Deborah was saying is that she wants more funding to go toward evidence-based, medical treatments for her son’s very real medical condition.

Unfortunately for so many of our most seriously ill population, lack of insight condemns them not only to the mental prison of psychosis but also to very real prisons, where we have chosen, as a society, to warehouse them. As I said in my TEDx talk, spending $80 billion on prisons and just $1.4 million on the National Institute of Mental Health is just plain wrong.

That’s my three cents’ worth, Mr. Kristhof. Thank you for bringing this issue to the forefront. As you so eloquently noted, “if we want to tackle a broad range of social pathologies and inequities, we as a society have to break taboos about mental health.” Let's go smash some statues.


Rubye Jack said...

You make some excellent points. It seems to me much of the problem around stigma is this thing that seems to be almost innate in humans
-- dislike of anyone perceived to be different from self.

Unknown said...

Have only recently started reading Kristof. Have been reading you over a year.
Agree about the stigma and denial which I see as a secondary infection to a deep wound. Makes the sick sicker and the helper who may have only a scrape to start soon winds up with sepsis.
This is what happens to parents who are stretched thin,insulted and overcharged,resulting in Depression, PTSD ,loss of identity.
Most vulnerable time is before diagnosis and successful treatment. When help is delayed the parent suffers the stigma as resources dry up,money disappears and is labelled mentally ill.
The antidote for this is compassion and acceptance. That, any one at time,some situation can occur that exceeds coping.Unfortunately,if issues exceeds 140 characters, lasts longer than 24 hrs, costs more than $20 compassion is short lived.

Unknown said...

I fully support Representative Tim Murphy's bill HR 3717, "Helping Families in Mental Health Crisis Act." CIT trained police officers, AOTs can help immensely in helping those who live with a serious mental illness get the proper medical treatment they desperately need. This bill will save dollars. It will also help the families to be proactive in the treatment of their loved one instead of being pushed aside and avoided by HIPAA laws, Imagine waiting in the emergency room to hear where and what treatment will be used for your adult child only to be told you are excluded from any information. This bill can and will save lives. Everyone needs to contact their Representatives in support of HR 3717. Thank you Representative Tim Murphy.