The Great Turning

Iden Campbell, CPRP
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When I first heard of the proposed “Helping Families in Mental Health Crisis Act of 2013” (H.R. 3717)”, I felt relieved and thought “maybe somebody has finally got it!” However, as I read and processed the words I realized just how much Tim Murphy didn’t get it. Is this mental health system broke? Yes it is. Can it be fixed? Yes it can. But we must do it collectively and with the experience and voices of those with true lived experiences including their families and allies.

People have ended up in jail and on the streets due to sweeping enactments by the government such as H.R. 3717. Do we really want to continue this legacy of big government telling us how to treat the most vulnerable in our communities? Our communities collectively must do this. Communities that have family and neighborly support have better outcomes for those with mental health breaks. We have not yet developed community support such as that in this country. We continually rely on government, hospitals and law enforcement to treat and make better those in need. This is not the way to go. We need community and family to love, nurture and support those that are the most vulnerable.

I personally know how hard it can be for a family that seeks support for their child or loved one who is in need of treatment and how frustrating it can be when that help is not given. I have struggled for years trying to find services that work for my sister. As a person that has been diagnosed with a developmental disability and a mental health issue, no one system wants to support her. It has been a constant battle for 25-plus years to get her housing, benefits and treatment. I myself have battled the system as a self-advocate for fair treatment, culturally competent treatment and housing. I have received treatment and been hospitalized in four states, received public mental health care in six states and housing in none.

In one state I received excellent care but no housing. Thus I was being treated while I continued to live in my truck. Each time I went to my therapist I had experienced a new trauma. All other states were sub par at best. In each state I met individuals who were being forced into treatment. I remember thinking that they seemed like they were the walking dead. No facial expressions, just following orders. Is this what we want our communities to look like? Our fellow brothers and sisters being forced into treatment that we know does not work for everyone?

Medication is not the end all for mental health crisis. Some people respond to medications, some do not. Some go deeper into crisis while others just exist. We must and can do better. Our system can be fixed but not just by one person writing an act and thinking it’s a cure-all because he is a licensed clinician.

I stand with millions of others who have shown through our resiliency that our movement is real, has saved lives and most of all we have people that can give voice to what really needs to be changed within the system. If only people will listen.

In the District of Columbia we are doing just that, we are building a coalition of survivors, resilient individuals along with clinicians and providers who believe in recovery. We were awarded the State Networking Consumer Grant in 2013 and quickly set about building this coalition that aims to make real change by putting our words into action and by using our skills and community to build each other up. In December 2013 we partnered with The National Coalition on Mental Health Recovery and Howard University to hold a conversation on mental health and addictions. We brought together community members to build a bridge by having face-to-face conversations about real life issues and events. We had police officers tell stories about how they have been touched personally by mental health crisis in their families and how this has helped them be more caring in their interactions with those in mental health crisis. We need more conversations with those in first responder roles so they can hear first-hand how their interactions with us either empower us to seek assistance from them again, traumatize us and in some cases we end up dead. Real stories, real people, real conversations create change. We don’t need behind closed door meetings held by 60 and 70 year-old white men who only know what they see on TV.

In January we held a city wide Service 2 Justice conference in partnership with over 20 other community based agencies. With a broad range of topics that included advocacy, transgender services, integrating peer workers into organizations, fundraising and building boards and committees. We have also created a partnership with dozens of community based organizations and social justice advocates to bring racial equality to the city. We held a 2-½ day workshop on undoing racism in July of 2012 and will be holding 2 workshops this Spring.

The equality work we do around racism is of the utmost importance; most members of our community forced into IOC are people of color, the underprivileged and those living in the transgender and gender-non conforming communities. Understanding the historical context behind the treatment of these communities is important in the social justice movement. We must know what has happened in order to not ask what’s wrong. Creating community space where all members feel safe, respected and well cared for is a must.

We can only live the life we were created to live if we break the shackles from our past and awaken to the true threat of our existence. In order to do this we must focus on “The Great Turning” and what the great Joanna Macy has put forth in the universe;

“To be alive in this beautiful self-organizing universe—to participate in the dance of life with senses to perceive it, lungs that breathe it, organs that draw nourishment from it—is a wonder beyond words. Gratitude for the gift of life is the primary wellspring of all religions, the hallmark of the mystic, the source of all true art. Furthermore, it is a privilege to be alive in this time when we can choose to take part in the self-healing of our world”.

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Interview with Iden Campbell McCollum:

27 COMMENTS

  1. Hi Iden,

    Thank you for your heartfelt article on the need for more caring communities. I think you nailed one of the greatest problems of being homeless is one of the greatest challenges and causes of mental and emotional distress that requires housing and not more bogus psychiatric stigmas and toxic drugging.

    I had been very impressed when I read about “housing first” initiatives that wisely recognized that focusing on so called health care of any kind was futile and even hypocritical as long at the clients lacked basic housing.

    http://www.hchmd.org/housingfirst.shtml

    http://usich.gov/usich_resources/fact_sheets/opening_doors_chronic_homelessness/

    I googled this topic and found several with the above two examples. One thing many providers have realized is that people refuse housing and services if forced psychiatric treatment and drugging are part of the so called bargain (with the devil in my opinion). Thus, in some cases they have been backing off on the type of AOT draconian measures being proposed now and focusing more on getting people into housing that often vastly improves their mental health, which comes as no great surprise as I’ve noted elsewhere on other recent MIA posts.

    You say that you and others got so called mental health services when homeless while help with getting housing was never part of the so called “treatment.” I find it disgusting to know that billions are wasted on a failed DSM biopsychiatry paradigm that pushes lethal drugs that are mostly useless and cause all the more problems while basic needs of such people in crisis are ignored for the most part.

    Are you aware of any recent initiatives that use such common sense that anyone would be in great emotional distress and trauma when forced to deal with homelessness, poverty and other life threatening issues on a regular basis. In my opinion, this should be the first priority.

  2. I was thinking about Housing Firs too, Donna. It makes sense that people would reject help getting affordable housing when it would be used against them. This is a very positive development. I’m guessing that having a safe home to return to every time one left would relieve a lot more anxiety than any drug.

    You’ve done wonderful work Iden. Congratulations on your group’s grant and your coalitions. You’re filling a need in your community and setting a fine example, thank you.

    • “safe home to return to”

      I have an AA friend who is always in treatment for alcoholism and “mental illness” (OCD) about every two months he drinks, gets kicked out of treatment or sober living then the anxiety-panic of being homeless causes him to drink to oblivion again and get arrested for public intoxication then he gets out and back into treatment. I told his parents who live 1000 miles away last time when I was trying to help him when he was drunk “I would like to tell him to just go home BUT HE DOESN’T HAVE ONE !!”

      They seem to be able to afford this stupidity and the treatment centers keep pumping him full of SSRIs (paxil) for his so called OCD that are likely causing his alcohol cravings. The family and treatment itself is causing the family in to be in” mental health crisis”.

      http://www.google.com/search?q=anti+depressants+alcohol+cravings

      I was just nasty to his parents last time saying “why don’t we feed him more pills put him in the same living situation again so that way if he drinks he becomes homeless again and see if we can avoid the same ******** is drinking and homeless crisis from happening?”

      His parents know everything, they read about “dual diagnosis” on WebMD and maybe a few NAMI pages so its back to treatment and more pills.

  3. Truly, inspirational, the way you express the vision for the country I envision for my surviving 22 year old son, and the family I hope he may be blessed with one day. I wish you could present this exact letter at the next hearing on HR 3717. I have so much admiration for you, Leah Harris, and so many others fighting to change the current psychiatric wasteland ( to borrow Copycat’s phrase). Thank you Iden.

  4. Hi, Iden!

    I am the mother of a psychiatric survivor and living in the belly of the beast, so to speak (Johnson & Johnson headquarters are just outside my window). I have just read Bruce Levine’s book “Get Up, Stand Up.” I, like so many other activists, am asking, “How to we find our way and fund our way out of this mess?” Do we shut down the psychiatric system first or do we open alternatives first? Do we fund this using government funds that are so enmeshed with the Big Pharma or do we stay pure? I believe that Housing First is a helpful directive.

    I am the chaplain at a university intentional community with a second floor that could be used for a Respite center (thinking Soteria-like). It seems like we can do housing first and then focus on alternative modalities. The university setting is a portal from which young people, separated from their support systems, can be introduced to the psychiatric system for the first time. Often their continuing enrollment in the university is based on a medication plan (which is a form of compulsion). When I was just starting to feel really overwhelmed by the work to be done, you have provided a clear guidepost for next steps. Thank you!

  5. Yes, how to fund this? The state of PA has two programs which were offered to my son instead of SSI: Works for Me and Think Beyond the Label. He was assessed and scored very high which meant he was encouraged to take out student loans and “retrain” at a Pennsylvania college. The student loans provided housing costs. The catch-22 is that if the student does not comply with the counseling center’s “recommendations”, enrollment can be terminated. The SSI attorney questioned the assessment of my son. Rightly so. He now has student loan debt without a degree. If it were not for RISN House, he would be in a group home still drugged or on the street. So, I struggle with the purity issue of the funding.

  6. Iden, great piece and glad to have your voice on this site. As someone who works part time in a hospital setting, I see how broken our system is for those who are in crisis and in emotional distress. The lions share of people who come through the door are either in poverty, unemployed, homeless, people of color, transgendered or some combination of those.

    We take in these people with tremendously complex socio-economic problems compounded by racism and discrimination and offer them….heavy psychopharmalogical drugs. And then we send them back out the door. “Here’s your 7 day supply and a shelter voucher.” And in a few days when the person decides they don’t like how the meds make them feel and stop them? The withdrawal symptoms can spike a new round of severe distress.

    And if we commit them and for outpatient treatment? Then we condemn people to ongoing side effects such as loss of libido (castration), cognitive fog and confusion, tics, tremors and long term health problems such as brain shrinkage, obesity, diabetes and heart disease.

    You are right that this disproportionately affects the traditionally disenfranchised including the LGBT community and people of color. Essentially we are allowing tState sponsored racism and discrimination to chemically control and damage certain groups of people.

    So….I am heartened by seeing you address the deeper issues instead of this bandaid approach that can easily do more harm than good. Housing is a key issue as well as examining how the community chooses to help people in distress. This should be a neighborhood by neighborhood and city by city issue…not one overarching government law that appears to have good intentions but is actually draconian in practice.

    Thanks much for your words Iden.

  7. This helping families in crisis is supposed to “save lives” right ? A “Mental Health Crisis” is usually diagnosed as “mania”. The standard treatment for a person experiencing mania is brain-damaging neuroleptics, although most probably know of the drugs as being called ‘antipsychotics’.

    “Mania” is usually diagnosed as bipolar. Well check this out,

    The selling of bipolar disorder stresses that the disorder takes a fearsome toll of suicides. And indeed the controversy surrounding the provocation of suicide by antidepressants has been recast by some as a consequence of mistaken diagnosis. If the treating physician had only realized the patient was bipolar, they would not have mistakenly prescribed an antidepressant. Because of the suicide risk traditionally linked to patients with bipolar disorders who needed hospitalisation, most psychiatrists would find it difficult to leave any person with a case of bipolar disorder unmedicated. Yet, the best available evidence shows that unmedicated patients with bipolar disorder do not have a higher risk of suicide.

    Storosum and colleagues analyzed all placebo-controlled, double-blind, randomized trials of mood stabilizers for the prevention of manic/depressive episode that were part of a registration dossier submitted to the regulatory authority of the Netherlands, the Medicines Evaluation Board, between 1997 and 2003 . They found four such prophylaxis trials. They compared suicide risk in patients on placebo compared with patients on active medication. Two suicides (493/100,000 person- years of exposure) and eight suicide attempts (1,969/100,000 person-years of exposure) occurred in the group given an active drug (943 patients), but no suicides and two suicide attempts (1,467/100,000 person-years of exposure) occurred in the placebo group (418 patients). Based on these absolute numbers from these four trials, I have calculated (see Figure S1 showing calculation, and see Figure 2) that active agents are most likely to be associated with a 2.22 times greater risk of suicidal acts than placebo (95% CI 0.5, 10.00).

    Read more http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.0030185

    This paper is called The Latest Mania: Selling Bipolar Disorder

    I don’t see how pushing drugs that are associated with a 2.22 times greater risk of suicidal acts is helping families in mental health crisis, that makes no sense to me.

    Mabey instead of spending billions and billions of dollars enriching the pharmaceutical companies and Universal Health Services, Inc. (NYSE: UHS) a Fortune 500 company based in King of Prussia, Pennsylvania that runs abusive psychiatric lockups we should work on actually helping people with the things that lead to the mental health “crisis” in the first place.

    Things like maybe housing , transportation … hope.

    Just the cost of the prescriptions I left the UHS hospital with would rent an apartment and lease a new car !!!! The hospital stay was almost $20,000 to be abused and threatened with a forced injection (rape with drugs) to try and coerce me onto a bunch of brain disabling pills cause I had a drinking problem and went to the E.R sick and shaking. I was made sick with those brain disabling pills years before after trying them for “insomnia” and refused to take that med road again, I had to quit drinking and I did.

    More on UHS , This site is dedicated to all the people who were harmed or killed in UHS facilities. They speak for those who have no voice, to protect others from experiencing the pain they endured. http://watchinguhs.wordpress.com/

    UHS profits are in the 100s of millions wile many patients go out the door with no place to live and traumatized from the strip searches, injections, injection threats, abuse with oral medication, assaults by staff…

    H.R. 3717 is just one more expensive fraud called help brought to us by the psychiatric pharmaceutical industry in its quest for more billions.

    • I just checked and the cost of the medication they “suggested” I take would make the lease payments on a new 2014 Mercedes S550 4MATIC® Sedan. No wonder Pharma pays NAMI to push for laws like H.R. 3717 , every “diagnosis” has the potential to bring in 100s of thousands of dollars.

  8. As the years go by I find it harder to believe that the system will be “fixed” anytime in the foreseeable future. We have been through various points where there was to have been no less then systemic improvement of our nation’s mental health system. For example, in 2003 the President’s New Freedom Commission on Mental Health shared the united opinion that our mental health system was in “shambles.” What followed were countless activities on the federal and state level which were to have led to a system of care predicated on fostering the domains of wellness and evidencing the principles of recovery. Conferences, colloquia, trainings, webinars, presentations, PSA’s, changes in language, pronouncements, new organizations, tag lines, task forces, workgroups that once again failed to lead to meaningful systemic change.

    Consider the Mental Health Transformation State Incentive Grants which totaled more then $100 million between 2005 to 2010. The grantee states failed to achieve the very transformation that the grants were to have facilitated. There were plenty of activities as evidenced by the “Transformation Tracker” but too few actually made a difference. (In fact, the “Transformation Tracker” was taken down shortly after the grants were completed.) The grantee states even failed the proof of concept when it came to creating more recovery enhancing environments.

    Then there was was the 10 by 10 Campaign which was supposed to reduce the premature mortality of mental health consumers by ten years in ten years. It is now almost seven years past the campaigns original announcement. There have been some integrated health grants but well into its ten year “effort” there is no evidence that consumer years of potential life lost have decreased. It is telling that the original campaign and the original promise broaden in response to coverage by NPR’s Maiken Scott and the effort became 10 by 10 Wellness Campaign. Then it simply disappeared under the rubric of SAMHSA’s Wellness efforts. (The original 10 by 10 Report from 2007:
    http://store.samhsa.gov/product/The-10-By-10-Campaign-A-National-Wellness-Action-Plan-to-I)mprove-Life-Expectancy-by-10-Years-in-10-Years-for-People-with-Mental-Illness/SMA10-4476

    If the past is prologue I fear there may only be localized bright spots and the systemic change necessary for a fixed system will continue to be an aspirational goal. In ten years will there be empirical evidence that our mental health system has changed for the better that Robert Whitaker could quantify? I wonder ….

  9. ​Joe:

    Something got glitched with a stray “)” in the URL in your message; let’s try this again:
    http://store.samhsa.gov/product/The-10-By-10-Campaign-A-National-Wellness-Action-Plan-to-Improve-Life-Expectancy-by-10-Years-in-10-Years-for-People-with-Mental-Illness/SMA10-4476​

    Unfortunately, the report is Out Of Stock, and unlike the other SAMHSA “Wellness Initiative” products, there’s no .PDF version available. Too bad, it would be an interesting read.

    ​The report​ was subtitled, “A Report of the 2007 National Wellness Summit for People with Mental Illness,” but the web site indicates it wasn’t published until October 2010 — no sense of urgency there, eh? 🙂

    Years ago I read where smoking cessation programs for vets wouldn’t help the Veterans Administration save any money; in the long run, it would cost the VA *more* if the vets *didn’t* get lung cancer and lived longer. It would seem that SAMHSA has similarly determined that extending consumers’ life expectancies by 10 years is no longer an active (or quantifiable) goal.

    Frustration with SAMHSA is nothing new. ​I keep hearing an old PSA late at night on ​my local radio station for SAMHSA’s “What a Difference a Friend Makes” project, but when you go to the advertised http://www.whatadifference.org URL, it’s an obsolete link on the SAMHSA site. It would appear helping consumers have supportive friends is no longer an active goal of SAMHSA’s, either.