You can’t have one without the other. I’ll explain as we go along.
As 2011 was winding down, SAMHSA issued what it termed its “… working definition of ‘recovery’ from mental disorders and substance abuse disorders …” Specifically, recovery is to be understood as “a process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.”
Nice, innocuous and inoffensive, something nobody could object to; which I suppose was the idea, in the interest of forging a speedy consensus among stakeholders. To judge from the SAMHSA blog, very few people did, with the possible exception of Ron Unger, a social worker and blogger, who was critical of SAMHSA for defining recovery as an indefinite process with no apparent endpoint: “In doing this, [SAMSHA is] lining up with a defective mental health system that has long been criticized for lacking exits…”
To operationalize its definition, SAMHSA also listed ten “guiding principles of recovery,” ranging from the importance of “hope” to the need for “respect” for those striving to recover. Still another of the ten principles was “addressing trauma”; and, once again, Unger observed that SAMHSA “fails to address the possibility that trauma may have played a causal role in creating the “disorder” that the person experienced … Apparently SAMHSA is still bowing to those who want to see mental disorders as strictly biological …”
I wholeheartedly agree with Mr. Unger and told him so in a recent e-mail; frankly, I have trouble with the notion of recovery and how its meaning has evolved over the years.
I was first introduced to the idea of recovery in 1989 when I was hired to write the curricula for New York State’s new Intensive Case Management Program. It was then that I met folks like Anita Pernell-Arnold, who was steeped in what was termed “psychosocial rehabilitation” after stints with Jerry Dincin at Thresholds in Chicago and Horizon House in Philadelphia, and Richard Surles, who had been commissioner of mental health in Vermont and then Philadelphia before being tapped by Cuomo the elder to occupy the same position in New York. Recovery, the endpoint of psychosocial rehab, was considered to be a repudiation of the DSM II & III conceptualization of schizophrenia as a psychic death sentence, a disease which offered no hope of improvement for those diagnosed with it. Psychosocial rehabilitation, which was to promote clients’ recovery, paid little attention to the biomedical model and never regarded psychoactive meds as the sine qua non of effective treatment. Rather, psych rehab rested on the “collaborative relationship” between case manager or coordinator and client, a relationship between presumed co-equals, and it saw their joint efforts in pursuit of the client’s rehabilitative goals as “client-driven.” As Judi Chamberlin and her successors would contend, and as time would prove, more rhetoric than reality, but I believed it when I wrote it.
By the mid-90’s, Pernell-Arnold and Surles were gone; within a couple more years, I was pushed out by the State as Director of Curriculum Development of the ICM training program. Before the decade was out, in 1999, the State legislature passed Kendra’s Law and established New York’s Assisted Outpatient Treatment program, and recovery as we meant it to be – integration into the larger community – had indeed become mere words. After Kendra Webdale was pushed in front of an oncoming subway train by a deranged mental patient, all mental patients were feautured on the front page of the Daily News as violent and dangerous. Social control trumped freedom. Little more than two years later, in October, 2001, our “fear of the other” became Federal law with the passage of the Patriot Act. Social control had trumped freedom nationwide.
Not surprisingly, and this is something Unger underscores, SAMHSA’s definition never specifies when one has “recovered.” Actually, we never did either, although I referred to recovery’s end point as a client’s “reclamation of community citizenship”, by which I meant her/his reclamation of civil rights and the aforementioned community integration. But I never equated recovery with liberation from the mental health system or freedom from dependency on it, as Chamberlin, et al, did and do. SAMHSA also conflates recovery from mental illness with that from addiction, leading me to conclude that SAMHSA sees recovery as an unending process not only for those individuals diagnosed with serious mental illnesses who need or choose to remain involved with the mental health system but for all persons with such diagnoses. Once you’re in, you’re in for good. Which flies in the face of reality, since most folks who want to get out of the mental health system eventually find ways to do that.
In any event, recovery from mental illness is not recovery from addiction. There are, of course, points of congruence. By SAMSHA’s own count – its 2005 nationwide co-morbidity survey – over fifty percent of persons reporting “serious psychological distress” use or abuse illicit substances; further, approximately half of that number are addicted to or dependent on intoxicants of all kinds. Lots of crossover between two presumably discrete groups. In addition, the individuals who comprise both groups are among the most feared and despised in this society. The social consequences, the stigma and marginalization for both groups, are enormous and destructive.
Nonetheless, once an addicted person’s neurotransmitters get attuned to an addictive substance, the craving for that substance never ceases; nor does that person’s recovery. Unceasing for the foreseeable future. On the other hand, persons who have psychotic experiences do not crave repeat episodes. Again, the consequences, for them as individuals and for the persons who care for and about them, are too severe. If anything, they usually do their damndest to avoid repetitions and to mitigate the consequences. That they often fail is testament not to the power of their presumed illness or to their failure to comply with their treatment regimens but rather to a mental health system that misconstrues their suffering and blocks them from discovering their sense of self and acquiring confidence in their ability to weather severe emotional storms.
Bluntly, it’s disingenuous to assert that those you purport to help can learn how to live a “self-directed life” in a system whose principal objective is to suppress their self-identity and replace it with that of “patient” or, more dishonestly, “consumer”, i.e., one who does not produce or initiate but quietly accepts what the system offers and acquiesces to a subordinate position in the system. We’ve learned from reading the personal accounts of Soteria residents and of Judi Chamberlain in On Our Own that recovery or reclamation of who you are occurs only after you’ve had the freedom to experience the terrors of psychosis and come out the other side alive and intact, with the conviction that you can lead your own life. In short, recovery appears to be co-terminus with that first breath of liberation, with the realization that you can live the remainder of your life free of the mental health system, free of dangerous medications, of the fear of losing your freedom whenever you have a weird or potentially subversive thought or feeling. So when we talk about recovery, we’re talking about recovering the identity that was taken from psychiatric survivors or that they never had the opportunity to develop, and not about recuperation from putative mental illnesses that, as Bentall and others have pointed out, have no factual basis. Ultimately, then, we’re talking about recovery as a political act, of liberation from oppression, that necessarily involves a rejection of a public mental health system that has been the instrument of oppression for those caught up in it.
Folks have done this. Here in the U.S., Courtenay Harding’s Vermont Longitudinal Study documents over the course of over 30 years the successful efforts of nearly 200 Vermont state hospital back wards inmates discharged into the community in the 1950’s to live their lives with no or minimal involvement with the mental health system. But the real question is where does one go for help now? Unfortunately, Chamberlin’s and the Soteria residents’ therapeutic experiences are as rare today as they were then. Chamberlin’s and her successors’ dream was and continues to be treatment alternatives developed and directed by survivors, some of which have been and continue to be implemented. Soteria replications are underway in Alaska and California; and a small number of peer-run respite programs, such as Voices of the Heart’s respite house in upstate New York, are being established. But the problem then and now continues to be money … how to raise enough to get these programs up and running, and enough of them to constitute a systemic alternative. The answer is not to be found in inserting peer specialists into programs in the existing public mental health system, since, at least here in New York state, they’re regarded as system “trustees”, as I’ve written in a previous blog, misused, underpaid and exploited. Accepting funding from government is also problematic, because government-funded programs and their outcomes then become subject to government scrutiny, revision and termination. Chamberlin and others hoped that the survivor community would collectively rise to the task; but that level of unity of purpose seems beyond its capacity, at least at present.
With any luck, that last comment might provoke some responses and get some ideas on the table. Topic for a future blog. And remember … Don’t mourn, organize!
Bentall, R., Madness Explained: Psychosis and Human Nature, Penguin Books, London, 2004
Bentall, R., “Abandoning the concept of Schizophrenia: the cognitive psychology of hallucinations and delusions,” in Read, J., Mosher, L.R., Bentall, R., eds., Models of Madness: Psychological, Social and Biological Approaches to Schizophrenia, Routledge, London & New York, 2004
Carney, Jack, “Helping Consumers Add Years to Their Lives, VIII: Jobs vs. Mental Health Careerism in an Ongoing Recession,” Behavioral Healthcare, June, 2011, @ www.behavioral.net
Carney, Jack, “Resistance in an Oppressive Mental Health System: One Step at a Time,” Behavioral Healthcare, December, 2011, @ www.behavioral.net
Chamberlin, Judi, On Our Own, Mind publications, England, 1988 (U.S. publication 1977)
Harding, C., et al, “The Vermont Longitudinal Study of Persons with Severe Mental Illness, I & II …”, American Journal of Psychiatry, Vol. 144, June, 1987, pp. 718-735
Mosher, L., et al, Soteria: Through Madness to Deliverance, Xlibris publications, 2004
Substance Abuse and Mental Health Services Administration, Results from the 2004 National Survey on Drug Use and Health: Summary of National Findings, Rockville, MD, 2005.
Substance Abuse and Mental Health Services Administration, “SAMHSA’s Definition and Guiding Principles of Recovery,” December, 2011, @ www.samhsa.gov/recovery/ & http://blog.samhsa.gov/2011/12/22
Treatment Advocacy Center, “Assisted Outpatient Treatment: Myth vs. Reality,” @ http://www.treatmentadvocacycenter.org/resources/
Unger, Ron, “Questions and Answers about Recovery, “ @ http://recoveryfromschizophrenia.org & http://blog.samhsa.gov/2011/12/22
Voices of the Heart, @ www.voicesoftheheart.net
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Great stuff Jack! I’m a survivor and organising like mad, Chrys
I love the idea of Soteria houses everwhere but what’s to stop them from continuing to be co-opted? How about a community kitchen grass roots model. We can use our libraries, community centres and churches, movie houses and cafes, as places to organize madness radio listening and discussion groups, mood food cooking classes, book groups, walking clubs, discounted or free Tai Chi, meditation and yoga classes… Offer and take alternative emotional CPR classes so we don’t freak out when we or our loved ones experience extreme states… and then offer our homes as safe places for each other to chill out for a few days. Otherwise, I’m afraid our efforts will be piecemeal, we’ll get burned out trying to keep things funded and brilliant projects will be co-opted by the status quo attached to funding. Thanks for this honest article.
Why not. Analagous to what the Occupy folks are doing; for which you’d require a fairly large number of reasonably coordinated individuals. The liberation I write about and to which you’re referring requiresd a movement of survivors and their supporters who are proud to say “Crazy and proud of it”. I’d like to think it’s slowly and steadily building.
We need “survivors and their supporters” to serve in advisory capacity for prevention so that teachers, parents, pediatricians and religious, community and youth leaders can help prevent the rise of another generation of psychiatric “survivors”.
Jack: The Vermont Study did not study a “no treatment” cohort. The 200 persons in this study were involved in an innovative inpatient/outpatient “rehabilitation” program led by George Brooks, M.D. The hospital staff treated/supported these patients for at least five years post-discharge from the state hospital. There is literature on this: google “Vermont Story George Brooks” and you will find various references.
Correct, Joel. I was summarizing the end result when, as Harding herself is proud to point out, approximately two-thirds of the folks she followed were close to fully recovered, I.e., lived ther lives with no or linfrequent contacts with the MH system. Harding, y the way, also talks of recovery for persons diagnosed with serious mental illnesses as the recovery by them of aspects of the self that have been lost.
Thanks for your,as always, challenging comments. Jack Carney
One other point … Did not mean to imply that the Vermont hospital staffers simply dumped their patients into the community, as was common practice throughout the country. The plan they developed and tested out was brought by Surles — along with many Vermont veterans — to Albany to launch his initiatives in the late 1980′ and early 1990’s. When he left – when Pataki replaced Cuomo — the Vermonters left with him and the efforts of those of us on the ground went leaderless. Joel, you’ve got me reminiscing.
Recovery here in the UK or at least where I live in Reading, Berkshire, seems to mean two things:
1 you are feeling a bit better than you were when you first contacted the services (even if you are a walking zombie druged up to they eyeballs with hardly any friends and your life constrained to bedsit land and the day centre)
2 services will no longer tell you that you should refrain from applying for jobs because they are stressful and might trigger a relapse.
Services are using something called, Recovery Star, a nice little life coaching tool which many find useful and which can sometimes help workers actually show an interest in the lives of their clients instead of patronisingly suggesting you do the washing up regularly because it will add structure to your life when you are feeling there is little point to living (sigh – are they trained in being patronising?). However they still push drugs like they are on commission from drug companies, seem to either pay no interest in trauma and the actual conditions of someone’s life (like actually helping to resolve conflicts with partners, landlords, family members etc) or actively discourage any conversation about the obvious causes of mental distress.
Recovery originally, as I understand it, was a service user concept that meant that people could actually recover as opposed to what most service providers thought. It has been co-opted so that it now fits in nicely with government agendas of getting people off benefits and back to work but with services hardly changing their policies and practices this is an unrealistic and sometimes cruel idea.
As I said elsewhere, “Recovery starts with non-compliance,” is a nice slogan. “Don’t let the bastards win”, is an even better one
Love both slogans. Was recently at an INTAR conference and saw a button bearing the likeness of an impish Bart Simpson and underneath his image the slogan “Non-compliant.” bought a handful and distributed them to friends and colleagues in NYC, who eagerly gobbled them up. Any act of resistance helps. Best, Jack
I was a peer worker at a state funded peer center from 1995 to 2010 when I quit over a conflict about sexual predation by a director. The peer community is not going to be any more moral or idealistic than the culture it arises from. We are just as susceptible as anyone else to the lure of money and power over others. I freed myself from the mental health system AS WELL as the professional-peer-provider mimicry of the system. The entire culture has to become life-affirming: it’s the inhuman economic system that breaks families and leads to madness.
I totally agree with you, Jeanne Smith. The cracks in the foundations of our culture and economic system are causing distress in people which I think is what most of what is called “mental illness” consists of. Our mental, emotional and social health are just more externalized costs to society of the grand inequalities of power. Stand up, fight back!
Ron Unger was not the only person objecting to SAMHSA’s re-defining of the word “recovery” in so broad a manner as to make it meaningless. I took part in this same debate as well. As far as I’m concerned, “recovery” and “liberation” are not one and the same. First, people are not always clear as to what a person would be “recovering” from, is it “disease” or is it “treatment”? Second, one is usually convicted of having a “disease” without benefit of a jury trial, and by virtue of the fact that this process takes place in civil court rather than in criminal court, due process becomes relaxed to non-existent. “Recovery” is also a word that is being co-opted by the mental health police force. Even drug companies are throwing around the word as if chemical maintenance had anything whatsoever to do with fully functioning human beings. Liberation, on the other hand, is real. Liberation from dependence on a system that stinks from top to bottom. Liberation is self-reliance, and it is not “normality”, “normality” being just another set of chains.