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Tuesday, 12 December 2017

The Power of Words: What the Wall Street Journal Didn't Tell You

scomstockBy Scott Bryant-Comstock

Note: This blog was published on Mad in America and is adapted from Scott Byant-Comstock's "Morning Zen" blog on the Children's Mental Health Network website.

Two weeks ago there was an editorial in the Wall Street Journal that basically eviscerated the Substance Abuse and Mental Health Services Agency (SAMHSA) while at the same time calling for support of HR 3717 – The Helping Families in Mental Health Crisis Act.

HR 3717 has elements that we agree with as well as elements we don’t. In addition, there are elements that are just plain confusing to us. If you haven’t already, I encourage you to read the Morning Zen post where we went through the bill page by page, identifying areas that raised red flags for us. We will be posting an updated more-detailed review next week.

Since then the introduction of the proposed bill we have read with great interest articles in the press, personal communication, and written testimony from past Energy and Commerce Subcommittee on Health hearings on HR 3717. Much of what has been written is definitely passionate and unfortunately sometimes vitriolic. In this post I want to address three of the most popular sound bites (two of which found their way into the WSJ editorial) that continue to come up again and again. It is interesting to note that these three provocative sound bites seem to have gone unquestioned in the popular press all these months, taken at face value for fact, creating an impression that might not be accurate. The other interesting aspect is that all three sound bites reference the Alternatives Conference. Some day I'm gonna have to go to that conference to see what all the fuss is about.

Note to readers: I have no monetary investment in the Alternatives Conference, nor have I ever participated in the Alternatives Conference.

Here are the three juicy morsels that keep making their way into the press:

  • The 2013 Alternatives Conference included a session titled “Dance Your Way to Wellness and Recovery
  • The 2013 Alternatives Conference included… a presentation from the “Hearing Voices Network,” which believes that hearing voices is a natural part of human experience...
    • From WSJ article - SAMHSA underwrites the Alternatives conference, which in 2013 included a session titled "Dance Your Way to Wellness and Recovery" and a presentation from the "Hearing Voices Network," which "believes that hearing voices is a part of human experience."
  • The 2013 Alternatives Conference included a session titled “Unleash the Beast.”
    • Opening Statement of the Honorable Tim Murphy Subcommittee on Oversight and Investigations Hearing on “Examining SAMHSA’s Role in Delivering Services to the Severely Mentally Ill” May 22, 2013."If SAMHSA were to use an evidence-based approach to identifying how to prioritize its resources – like other federal agencies do – would their record, not to mention their strategic initiatives going forward, look the same as they do now? For example, in 2012, an annual conference that has been funded by SAMHSA for many years – and at which the SAMHSA administrator regularly delivers a keynote – Alternatives, an hour and a half workshop was held, described as follows:Unleash the Beast is a mind/body fitness program that looks to the animals of the jungle for wisdom and skills that can benefit our lives in a myriad of ways. Through animal-inspired movements, behaviors, and expressions, participants are encouraged to shed layers of formal conditioning in order to return to their primal nature.While mental and physical health is important, I question the value of this exercise in advancing the treatment for mental illness in humans. And, I question if there is any scientific merit." 

In the most recent hearing on HR 3717 one of the expert witnesses was asked if he thought SAMHSA offering a workshop titled Dance Your Way to Wellness and Recovery was a good use of federal funds. I remember at the time thinking how I would answer. It would be something like “It depends on the context.” Realizing that I did not know the context I did some digging. Here now is some background on each of them.

Let’s start with “Dance Your Way to Wellness and Recovery” It turns out that this “session” was actually part of the morning wellness activities offered to conference participants from the hours of 7 am – 8 am before any general session started. In addition to this offering, there was a yoga session as well as a silent meditation session. Like most Network faithful, I have been to many conferences that offered early riser exercise or centering sessions to prepare conference participants for a long day of sitting in sessions. I would be hard pressed to imagine any physician arguing against the benefit of exercise or centering activities before a long day of workshops. Think Zumba – one of the biggest conference crazes currently around. And why do conferences offer sessions like this? Because increasingly conference participants demand wellness activities so that they can get their workout or quiet time in before the workshops begin. But let’s peel the onion a bit more and look at the description of this session as printed in the conference agenda:

  • “The Health and Wellness Fair is also offering selected wellness practices throughout the conference. These wellness activities are open to anyone at any fitness level. Activities are on first floor.”
    Wellness Activity: 7:00 – 8:00 a.m. Dance Your Way to Wellness and Recovery (Foothills I) Shining River (Sheilah Hill)"To watch us dance is to hear our hearts speak" (Hope/Choctaw). Dance for celebration, for wellbeing, for mental clarity, and healing. Learn how to release tension and discover new ways to listen to your body. No dance experience or ability is necessary for this free-form movement.

The description makes clear that the focus is on free-form movement – no dance experience necessary and also references the importance of dance to tribal nations, presenting an opportunity for some cultural learning as well.

With this important context, the accusation that offering this wellness activity is a poor use of money gets complicated real quick. It should be noted that the conference also conducted mini-health screenings where people could get their blood pressure checked, get a reading on their blood sugar levels, and get some ideas on getting and staying healthy. Sounds pretty reasonable to me.

Hearing Voices Network Okay, on to the next oft-used phrase in this increasingly vitriolic dialogue, also referencing the Alternatives conference – “a presentation from the “Hearing Voices Network,” which believes that hearing voices is a natural part of human experience.”

Here is the workshop description:

  • Discover the Hearing Voices Network (Foothills II)
    Lisa Forestell, Marty Hadge, Janice Curtis, Becky Edwards The Hearing Voices Network (HVN) believes that hearing voices is a part of human experience. The presenters are voice hearers and trained HVN facilitators who find support through community created around the HVN principles of inclusivity and non-pathological, judgment-free connection. This workshop will provide an overview of HVN and its principles and will provide information on how to develop new hearing voices groups across America.

It turns out that the Hearing Voices approach has been developed over the last 25 years in Europe and is now practiced in 23 countries across the world. Essentially it involves engaging the voice hearer about their experience and determining the meaning the voices have for them in relation to their lived experience, with the objective of developing long-term coping strategies.

One of the tenets of Intervoice, which is the international umbrella of the Hearing Voices Network, is to develop a close and respectful partnership between voice hearers – who are experts by experience and mental health workers, academics and activists – who are experts by profession. The group stresses the importance of both voice hearers and professionals engaging in respectful dialogue.

In context, this seems like a perfectly reasonable session to offer at a recovery conference. I get the fear amongst the psychiatric community that this suggests that there is never a role for psychiatric intervention but from what I read that appears not to be the case. This is undeniably a controversial discussion point from the medical community perspective but this is also a movement that is not going away. If anything it is picking up steam. Instead of shouting it down, it seems to me that the more fruitful approach would be to engage in respectful dialogue.

Here are two examples to illustrate further what the Hearing Voices Network is. The first is a Ted Talk by Eleanor Longden and the second is an interview by Allen Frances, MD and Eleanor Longden. The sub-title of the interview is appropriately titled “Reconciling psychiatry and recovery.”

Eleanor Longden, Hearing Voices Network Eleanor Longden spent many years in the psychiatric system before earning a BSc and an MSc in psychology at the University of Leeds. She argues that schizophrenia is a "creative and ingenious survival strategy" that should be seen "as a complex, significant, and meaningful experience to be explored." Longden is studying for her PhD and lectures and writes about recovery-oriented approaches to psychosis, dissociation and complex trauma.

Psychiatry & Hearing Voices: A Dialogue With Eleanor Longden
In this interview, Dr. Allen Frances and Eleanor Longden have a dialogue attempting to find common ground between psychiatry and the Hearing Voices Movement. Read the interview. And then, come back to this post – we still have more to cover. Dialogue is key, folks.

Unleash the Beast

On to the final sound bite, not in the WSJ article, but worthy of inclusion here in case you are asked about it. This is from the Opening Statement of the Honorable Tim Murphy Subcommittee on Oversight and Investigations Hearing on “Examining SAMHSA’s Role in Delivering Services to the Severely Mentally Ill” May 22, 2013:

"If SAMHSA were to use an evidence-based approach to identifying how to prioritize its resources – like other federal agencies do – would their record, not to mention their strategic initiatives going forward, look the same as they do now? For example, in 2012, an annual conference that has been funded by SAMHSA for many years – and at which the SAMHSA administrator regularly delivers a keynote – Alternatives, an hour and a half workshop was held, described as follows:

  • Unleash the Beast is a mind/body fitness program that looks to the animals of the jungle for wisdom and skills that can benefit our lives in a myriad of ways. Through animal-inspired movements, behaviors, and expressions, participants are encouraged to shed layers of formal conditioning in order to return to their primal nature.While mental and physical health is important, I question the value of this exercise in advancing the treatment for mental illness in humans. And, I question if there is any scientific merit."

Without the proper context one could draw the same conclusion. Unleash the Beast is such a provocative title I had to investigate this one. It turns out that the presenter grew up alongside an older brother with autism. At the age of 12 he was in a serious car accident and suffered a severe Traumatic Brain Injury. He spent three months in the hospital, relearning how to walk, talk and think. The next 15 years of his life were spent riding a roller coaster of success and setback dealing with severe physical, mental and social difficulties. Fast forward to today, he is a certified Life Coach, peer support specialist and works with individuals discharging from the psychiatric ward at a local hospital. His specialties include working with individuals who have brain injury, trauma/PTSD, bipolar, Autism spectrum/Asperger disorder.

Okay, he passes my test for a credible presenter. But what about the subject matter? I didn’t attend the session so I certainly can't speak to that but it did get me thinking about mind/body work and the question of scientific merit. We should be aware that the National Institute of Health established the National Center for Complementary and Alternative Medicine (NCCAM) in 1999. Since that time they have been looking at alternative forms of treatment (meditation, forms of movement therapy such as yoga, etc.,) and are taking a refreshingly open view towards the efficacy of complementary and alternative practices that may not yet be considered evidence-based. Much of what has been discussed in this post most likely falls into the practice-based evidence camp instead of the evidence-based practice camp. It is encouraging to see that NIH is keeping an open mind about alternative practices, as we all should.

Watch this brief video announcement from Josephine P. Briggs, M.D. Director, National Center for Complementary and Alternative Medicine

One thing we know for sure, the Veterans Administration has embraced body movement practices with returning servicemen and veterans who are experiencing PTSD. At the Washington VA Medical Center, both Yoga and meditation are used to help veterans recover from trauma. Many treatment programs for veterans with PTSD as well as individuals with diagnosed severe mental illness offer mind/body therapies, equine therapy (remember the first sound bite - Spirit of the Horse?) and other expressive arts therapy, including the healing power of dance. For a fascinating read on how dance/movement therapy approaches were used to foster resilience and recovery among child soldiers in Sierra Leone who had experienced significant trauma, read the paper by David Alan Harris.

The Next Time You Read a Sound Bite...

The next time you are discussing HR 3717 with colleagues and one or more of these sound bites are referenced, hopefully you will be able to avoid the visceral reaction (pro or con), thoughtfully consider the context, and will be able to engage in meaningful dialogue about this proposed bill.

* * * * *

"National Alternatives Conference: Voices of Experts by Experience"

"Voices Matter," video about the World Hearing Voices Conference in Wales

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