Open Letter to Senator Creigh Deeds

Leah Harris
19
114

Dear Senator Deeds:

Hello from another fellow Virginian. First, I want to extend my deepest condolences for the horrific tragedy that befell your family last year, and for the loss of your precious son Gus. I think I know, at least in part, how agonizing it is when our loved ones cannot access helpful supports, and how it feels to watch in horror as they spiral downward into darkness and despair.

You see, I was born to two people diagnosed with schizophrenia and bipolar disorder. I had the misfortune of spending 30 years of my life watching them steadily decline until they both died quite young. My mother, once a promising young artist and poet, became periodically homeless. She was one of the people we see everywhere in our communities, wandering the streets alone, in filthy clothes, talking back to the terrifying voices she could not make go away. She died at age 46 due to a “passive suicide,” when she refused a simple, life saving medical treatment.

My parents were under some form of Involuntary Outpatient Commitment (IOC) for many years of their lives, and these interventions never helped them to recover. My mother was so traumatized by the coercive “treatments” she was subjected to in state hospitals — including many instances of seclusion and restraint — that she finally rejected even a standard medical procedure that would have saved her life. My father largely complied with his mental health treatment, but he still never had a good quality of life. He never was able to work much, or achieve his dreams. He was largely isolated in his community, and died of toxicity from extreme overmedication at age 63. At the age of 30, I became an orphan. My eight year-old son has no maternal grandparents, and deeply mourns this fact.

And I myself have also struggled with mental health challenges. As a young woman I was frequently suicidal, and spent much of my adolescence in various facilities and institutions. I almost ended up spending my life in a decrepit group home, but I managed to get on a different path — in large part, due to the support of my family and friends, as well as my “peers,” people who have experienced mental health challenges, but have found recovery and hope.

I, like you, want to see much better outcomes for people struggling with mental health challenges, their families, and their communities. I, like you, want to see families and communities be able to easily access the services they need to support individuals with mental health challenges to recover, and to lead meaningful lives.

Perhaps you are convinced that the IOC solutions proposed by the Treatment Advocacy Center will prevent other families from going through the tragedy that yours experienced. Perhaps you think these proposed solutions will prevent another Newtown or Navy Yard. But the fact of the matter is that IOC is costly and won’t lead to the outcomes we want. It is largely perceived as invasive, humiliating, and traumatizing by those under commitment orders.

IOC won’t solve the crisis our nation is facing. It won’t make our communities safer.

I promise you that there is another way.  A better way. Let’s work together to transform the way we understand and respond to Americans living with mental health challenges.

For the last 13 years, I have been active in the “mental health recovery movement.” We are the very people that Representative Tim Murphy and others have targeted as “not doing enough for the severely mentally ill.” But that is simply not true. As a direct result of the peer recovery movement, I was able to move from rotting in a filthy group home to earning a graduate degree at Georgetown University, to becoming a mother, to choosing a career as a mental health advocate. I was supposed to be someone who ended up like my parents. I’m grateful that with the right supports, I’ve been able to break the cycle of misery that has gripped my family for decades. I’m just one of many who has broken the cycle. Come learn from us, and with us.

I invite you to watch this short video from the SAMHSA-funded Alternatives Conference that gives you a sense of the vibrancy and hope contained within our movement. Over the last 13 years I have seen people with the most severe diagnoses and symptoms learn not just to survive, but thrive. I have seen people who have gone from being completely non-communicative to leading trainings and supporting others to recover. I have seen people who were written off as “severely mentally ill” go on to have families, jobs, and fulfilling lives.

In Europe, they call us “experts by experience.” We have deep insights into what it feels like to be a patient, what interventions and supports are helpful, and which ones hurt us and cause us to reject help. We reject help not because we “lack insight into our illness,” but because the help that is provided, despite the best intentions of hard-working folks providing services, is often experienced as scary and dehumanizing.

People with personal experience of mental health challenges, psychosis, and suicidal feelings have come up with some of the most exciting innovations in crisis services to date. The “peer-run crisis respite” model allows individuals in crisis to receive support from their peers in a home-like, non-institutional setting in the community. Preliminary evidence suggests that peer-run crisis respite and other recovery-oriented crisis services have helped people to end the revolving door cycle, and to find a way out of suffering. But unfortunately, due to lack of political will, these peer-run crisis respites have not been adequately researched or funded, and there are only a handful of them existing around the country. My vision is that one day, there would be a peer-run crisis respite as well as other voluntary, easily accessible crisis services in every community in this nation. People and families in crisis would know immediately where to go, and they would not be turned away.

In addition to crisis respite, people with lived experience have much to offer. We have developed trainings to help people who hear voices to learn to cope with their voices, and go on to be active members of their communities. We have developed supports for people who have experienced trauma and abuse. These are just a few of the exciting innovations we have to share. We can also provide valuable input into policy, as well as the design and evaluation of programs and services. We want to work collaboratively with lawmakers, administrators, providers, and families to ensure that no one is unable to access supports they want, that no one is ever traumatized by their mental health treatment, and that no one struggling with hearing frightening voices ends up in prison or homeless and wandering the streets. No one would ever have to fall through the cracks again, and our communities would be stronger and more resilient.

We all agree that our mental health systems are broken. Those of us who have been down the hellish road of struggling with our mental health and have found recovery have developed a new vision that will take us forwards, not backwards. Please give us the opportunity to share that new vision with you.

Together, let’s break the cycle of shame, isolation, and suffering. Let’s do it to honor the memory of your dear son Gus, to honor the memory of my beloved parents, to honor all our loved ones who died so tragically and so young, when it could have been avoided. Let’s do it to give hope to families and communities that live in the shadow of fear and grief.

Thank you, Senator Deeds, for taking the time to read this.

Sincerely,

Leah Harris
Arlington, VA

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Leah Harris
Speaking Truth to Power: Leah writes about holistic, community-based approaches to support those experiencing emotional distress and extreme states; storytelling as a vehicle for personal liberation, human rights, and social justice; and connections between creativity, activism, spirituality, and social change.

19 COMMENTS

  1. Leah- having walked in Sen. Deeds’ shoes to some degree as my beautiful son @age 23 suffered a “mental breakdown” 2 months after marrying his longtime girlfriend. My son was dealing with too many stressors but unbeknownst to his parents (who were with him as his mind spun into another orbit literally out of nowhere) he admitted to us that hellish night (both my husband and I who despite our professional careers have never dealt with anyone whose mind was unraveling before us, and considering it was our first-born son who we have cherished, protected, nurtured and loved since we found out we were going to parents in 1986 it was the most horrific night of our lives) he had been using “recreational” drugs including cannabis.
    We were so desperate to find help and knowing nothing about the business of psychiatry, turned to a psych hospital to help our son. And I read Sen. Deeds and his family followed the normal path, as well, believing, like us, this was the road to get our “children” back to normal. Sadly, like my family, and Senator Deeds- nothing “normal” from the time our son walked voluntarily with the hosp staff into a locked unit transpired. But the damage from being brainwashed “mentally ill for life” instead of the TRUTH his brain had spun out from “recreational” drugs was discussed- just warehouse, label, massively drug with neuroleptics until our son was lisping, drooling and completely psychotic.

    As I have taken on this crusade, to educate myself about the truth behind my son’s two breaks from reality, 18 months apart, sadly we took our son both times to a psych hosp (the latter ONLY for drug rehab but my son was tricked into their locked unit where he was never given any rehab, just massively drugged again with neuroleptics…, warehoused, and then “dumped” after 13 dys the hosp took the thousands we were charged the day before adm believing our son was going to get the drug rehab promised). I believe every hosp in America IF they practiced the BMJ’s Best Practice Assessment of Psychosis guidelines, Gus Deeds ( the senator’s son) and my son (and countless other young people who naively believe “recreational” drugs are “innocuous”) would get the CORRECT DX why their brains went into psychosis. Imagine if both young men had been educated they DID NOT have an incurable, lifelong MI!!!. This is the WAKE UP society, I believe, needs to know. http://psychoticdisorders.wordpress.com/bmj-best-practice-assessment-of-psychosis/
    “Organic causes must be considered and excluded before the psychosis is attributed to a primary psychotic disorder. The MOST common cause of acute psychosis is a drug toxicity from recreational, prescription, or OTC drugs. Recreational drugs including: urine testings is required on all pts to screen for amphetamines, cocaine, cannabis, and benzodiazepines.

    Both hosp adm, my son tested + for THC (in cannabis) but both adm the p-docs told him, and his family, “no correlation”. LIARS!!! The path Senator Deeds, and my family, took believing our sons were going to be compassionately assessed, and supported, back to their always, normal, healthy way of living did not happen. The nightmare of being forever labeled with an incurable lifelong MI (some spectrum of psychosis- especially now the ubiquitous “bipolar” dx) IMO led my son and Gus Deeds’ to their demise.

    I would like to ask Senator Deeds to not rationalize the horror he has lived through until he thoroughly examines the root cause of Gus’s breakdowns. I believe, as I have educated myself about the business of psychiatry, and why the truth was denied by son and his family, we must work together. The IOC/AOT solutions are NOT the right direction. I beg Senator Deeds to reach out to SAMHSA alternative programs and learn really how Gus could have been saved.

    • Hi larmac,

      My sincere condolences on the loss of your son.

      While I appreciate the efforts of Robert Whitaker and all of those involved in the Mad in America site, I find the failure to understand the value of Functional Medicine/Integrative Psychiatry/Orthomolecular concepts very troublesome.

      Soteria House and Open Dialogue are very nice concepts but unfortunately, they fail to test for and treat underlying causes of psychosis/mania.

      In 2011, 19-year-old Mozelle Nalan was a victim of a fatal shooting at the Soteria House in Alaska.

      In Mozelle’s case, the Soteria model failed. Without applying Best Practice Assessment standards, it will always fail.

      No one on this site seems to understand Best Practice = The Right Way to do something.

      Take care, Maria
      “Better to light a candle than curse the darkness”

      I hope you find comfort in these words:

      Desiderata
      Go placidly amid the noise and haste, and remember what peace there may be in silence.
      As far as possible without surrender be on good terms with all persons.
      Speak your truth quietly and clearly; and listen to others, even the dull and ignorant; they too have their story.
      Avoid loud and aggressive persons, they are vexations to the spirit.
      If you compare yourself with others, you may become vain and bitter;
      for always there will be greater and lesser persons than yourself.

      Enjoy your achievements as well as your plans.
      Keep interested in your career, however humble; it is a real possession in the changing fortunes of time.
      Exercise caution in your business affairs; for the world is full of trickery.
      But let this not blind you to what virtue there is; many persons strive for high ideals;
      and everywhere life is full of heroism.

      Be yourself.
      Especially, do not feign affection.
      Neither be critical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.

      Take kindly the counsel of the years, gracefully surrendering the things of youth.
      Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings.
      Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself.

      You are a child of the universe, no less than the trees and the stars;
      you have a right to be here.
      And whether or not it is clear to you, no doubt the universe is unfolding as it should.

      Therefore be at peace with God, whatever you conceive Him to be,
      and whatever your labors and aspirations, in the noisy confusion of life keep peace with your soul.
      With all its sham, drudgery and broken dreams, it is still a beautiful world. Be careful. Strive to be happy.

      © Max Ehrmann 1927

  2. Thank You , Leah, you’re an inspiration and example ,to know that people with your kind of vision are in this movement breathes oxygen into hope.
    When I realized that the widespread drugging of children was going on it felt to me that some kind of State Medical Psychiatric Beyond Kristallnacht was and is going on, boldly at even our children , toddlers,and babies. For the general population to be so deeply asleep boggles my mind.
    The only way I know to real peace of mind is to do the best I can in this struggle for survival. As a psychiatric survivor and expert by life experience I would like to write a blog on this MIA site and explain more thoroughly what I have brought back that may be of real use from my experience and to explore how all who wish can do this and have it considered in a world coerced by pseudo science and their bogusly designed clinical trails for profit , where an individuals life experience discoveries are so swiftly marginalized, and where the cult of the educated is worshipped. Is this done simply by making a request to Bob ? Thanks , Fred
    I did call the senators from my state of OR. today advocating strongly they should vote against section 224 of H.R. 4302 which is up for vote today. Both phone answerers of the senators said they did not know where the senators stood on this issue .

  3. Leah,
    I was going to suggest that you contact Virginia’s inspector general for behavioral health and developmental services, Doug Bevelacqua, with whom I have had some phone conversations and correspondence and found to be an honest and open-minded man. However, I now find that he has now resigned in protest over the handling of the Deeds tragedy. Mr. Bevelacqua’s mother suffered under a life-long diagnosis of schizophenia.

    http://www.nbcwashington.com/news/local/Virginia-Inspector-General-Resigns-Over-Deeds-Report-248396721.html

    • Leah,
      Mr. Bevelacqua states in his resignation letter, linked in the news article above, that he is still interested in mental health reform. Perhaps he might like to join your organization.

      “I regret this resignation more than I can put into words, but I feel that I can no longer be an authentic, independent voice of accountability for the citizens of Virginia on matters of behavioral health and developmental services, and that I must move-on. I will look for other opportunities to serve our disabled neighbors and their families.
      Please accept my resignation effective March 1, 2014, and feel free to contact me it you have any questions concerning the comments above or this resignation. I remain
      Sincerely,

      G. Douglas Bevelacqua”