The Politics of Systems Change: Lessons Learned from the Launch of the DSM-5 Boycott

Machiavelli had it right.

“There is nothing more difficult to take in hand, more perilous to conduct, or more uncertain in its success than to take the lead in the introduction of a new order to things.”

Ever since we launched our DSM-5 Boycott three weeks ago, we’ve received support from organizations and individuals but have become entangled in more wrangling than I ever would have anticipated. While some folks have endorsed our approach and our immediate objective, curtailing the sales and the use of the new DSM, many others have criticized our tactics and strategy and have suggested we stop what we’re doing and start all over again.

Most of the comments have been pointed but civil, but a few have been personal and fierce enough to make me wince. My wife has helped keep me somewhat grounded, reminding me, as only someone who’s known me for thirty-five years can, “Well, what did you expect?” When a few sympathetic individuals attempted to commiserate over the barrage of criticisms directed my way, I tried to remain philosophical and remarked, “It seems some folks are unhappy because we haven’t declared the revolution and others because they’re afraid we might.” Another of our Boycott Committee members suggested I stop responding to the more provocative e-mails I was receiving. You know; what if they gave a war and nobody came?

That helped a lot and gave me the time to sit and reflect on what this Boycott was all about and what we might learn from the experience, whether we succeeded or failed. After all, despite years of grassroots organizing and of being a critic of the public mental health system, this was the first time I was involved in publicly challenging one of the several 800 pound gorillas that dominate the mental health system. I felt naked. We launched the Boycott, in part, just to do it, just to learn how to promote systems change on a national scale. I’m a “trial and error” guy, a partisan of the notion that nothing teaches better than failure. To quote John Gardner, “If you want to keep on learning, you must keep on risking failure.” It’s not that I anticipate we’ll fail, but I do know we’ll make mistakes and we intend to learn from them.

The wrangling hasn’t stopped, but I’ve come to see it in a different light, to view the tumult as part and parcel of getting the Boycott off the ground. It’s also an indication of our collective powerlessness, of our inability to put aside differences over tactics and unite around the paramount goal of weakening the power and prestige of the American Psychiatric Association. More on this below. Ultimately, the differing factions don’t trust one another to get the job done, and no single group has sufficient power and influence to persuade or cajole the others to follow its lead.

Outsider critics have likened us to a herd of cats – my metaphor, not the critics’ — who spend too much time and energy squabbling with one another. Actually, that’s wishful thinking on the part of the persons who made that observation. Our evident disunity is better understood as one pole or consequence of the several contradictions or dialectics in which we’re caught up and that are endemic to any social change effort. If we’re faced with any immediate task, it’s to identify those contradictions – specifically, the dialectic polarities – and address and mitigate them sufficiently to allow us to collaborate.

Michael Papa and colleagues, in Organizing for Social Change (2006), examine four social change projects that are taking place here and in India and are aimed at empowering the powerless. They identify four sets of dialectics that underpin all four to varying degrees:

• Fragmentation ←-→ Unity
• Dissemination ←-→ Dialogue
• Control ←-→ Emancipation
• Oppression ←-→ Empowerment

They also identify a meta-dialectic — Change ←-→ Permanence – which depicts the change process and provides the context for the other four. All of the four and the meta-dialectic are not “either/or” but rather “both/and” phenomena which contain tensions that are never resolved – they oscillate between the polarities and move the meta-dialectic or change process between change or stability. Should the tensions cease or diminish, movement towards change stops and whatever might have been achieved either dissipates or becomes institutionalized or permanent. Correspondingly, the group or organization that has served as the vehicle for change either ceases to exist, loses vitality or disavows its change agenda. Whatever the ultimate outcome, the tension crucial to the change process will continue its polar back-and-forth so long as it attracts a constituency committed to achieve change.

The first dialectic, fragmentation vs. unity, aptly frames the relationship between the two principal factions currently competing to lead the struggle against the DSM-5, the International DSM-5 Response Committee, whose membership is indeed international and largely British-based, and the Committee to Boycott the DSM-5, rooted in the U.S. and complemented by French and Canadian members. This is the group I helped found, along with Dan Fisher and Joanne Cacciatore, and which I currently serve as coordinator.After a week-long negotiation, both groups decided to go their separate ways, accepting the fact that personal and policy differences would not allow consolidation and would block any effective cooperation for the foreseeable future.

In dialectical terms, we opted for disunity and continued fragmentation of effort in achieving our common goals, the diminution of the sale and use of the new DSM and a corresponding loss of income, power and prestige for the APA. Practically speaking, we decided to forego what seemed fruitless discussions and to invest our time and energy in strengthening our respective Committees. On a more hopeful note, we did leave the door for eventual collaboration ajar – and some tension in the dialectic — by having several members of each Committee serve on the other. Time will tell whether our decisions were wise ones; but, as Zen-Buddhists would have it, the world is perfect as it is.

Our own Committee is less than two months old, and has slowly expanded over that time to twenty very diverse members — all opposed to the new DSM; most long-term activists; three-quarters professional practitioners; two-fifths psychiatric survivors or users of service. We’ve developed an efficient recruiting and vetting process and are always looking to expand our membership. We’ve spent much of this time focused on two inter-connected tasks: learning how to be a Committee and how to get the word out about the Boycott. Since we’re about change, the former involves negotiating the series of dialectical processes listed above – securing a Committee-wide consensus about our mission and objectives; fostering organizational cohesion; developing an internal communication system; empowering members to utilize their many skills in promoting the Boycott and their own personal growth. All ongoing works in progress, collectively aimed at enhancing our effectiveness in obtaining signatures of support and organizational endorsements of the statement that embodies our rationale for launching the Boycott in the first place. See it for yourself at http://www.ipetitions.com/petition/boycott5.

It appears that this latter task, our outreach strategy, will increasingly involve use of social media – Twitter and Facebook. Each Committee member is being asked to connect her/his accounts to the Facebook and Twitter widgets that are found on both of our two websites – the second is considered our informational site and contains the listings of Committee members and organizational co-sponsors, updates and blogs, and can be located at http://www.boycott5committee.com. The Facebook link leads to our Facebook “cause” page, the link to which can then be posted to one’s “friends”; the Twitter feed allows a link to either website to be forwarded to one’s “followers.”

Our plan is to continue to add “friends” and “followers” indefinitely and send reminders and tweets to them periodically. At the time of this posting, we’ve collected close to 900 signatures. Not very many, but we anticipate that prospective DSM-5 purchasers’ interest will be piqued as the May publication date for the new DSM draws near. Which is why we launched our Boycott initiative four months prior to the new DSM’s publication – to build momentum and a base of several thousand “friends” and “followers.”

Our aim is to obtain 100, 000 signatures by the end of this year. Yes, by the end of this year — this will be a long campaign against a powerful and dismissive foe, and we will keep the websites up and running so long as people continue to affix their signatures to the Boycott statement. And yes, 100,000, although I think we can take the next step we’re planning with a quarter of that number. Just so you know, our next step does not involve handing a petition to the American Psychiatric Association and asking them to halt publication and/or revise their new DSM. Despite its location on the ipetitions website, the Boycott statement is not a petition.

The APA has so much invested in the DSM-5 – an estimated $25 million and their prestige and credibility – that I don’t believe they’d be inclined to negotiate with anyone. No, we will use however many signatures we garner to attempt to discredit the APA and reveal it as the fraud it is. Does this constitute “anti-psychiatry?” (That phrase always reminds me of the Republicans crying “class warfare” whenever they’re obliged to defend the interests of their rich patrons.) Draw your own conclusions. Who but a madman could be “pro-“ an organization that has shamed itself and destroyed its own credibility?

As per Foster-Fishman, et al, systems change is circular, iterative and relational and involves altering existing relationships of the system’s stakeholders – the more they’re disrupted, the greater the change. Systems change is simultaneously a step-by-step process, proceeding from first order to second order change, or from a system’s more vulnerable parts to those which are entrenched and apparently intractable.

The latter requires fundamental systems change or a re-ordering of the system’s norms and values, resources, power distribution and the inter-dependence of the system’s component parts. When I look at the public mental health system, I see four institutional entities that dominate it, control its resources, and project its basic norms — the APA; Big Pharma; Big Insurance; and the Federal and state governments, particularly the U.S. Department of Health & Human Services, CMS (the Center for Medicare and Medicaid Services), NIMH and SAMHSA. The remaining stakeholders include the rest of us – provider agencies, including hospitals; practitioners, including primary care physicians, all other professionals and peer specialists; users of service; their family members, including NAMI; psychiatric survivors; advocates and activists. (I’m sure I’ve overlooked at least one presumed stakeholder – my apologies.) At present, the “rest of us,” by comparison, are disparate, divided and powerless.

Further analysis reveals that the four dominant stakeholders have succeeded in securing from virtually all of the “rest of us” — save for a few incorrigibles – agreement/acquiescence on the key defining characteristics of the existing mental health system:

• the APA’s nosology or classification of mental diseases contained in the DSM;
• the diagnostic coding system currently contained in the ICD-9 and mimicked in DSM-IV;
• the centrality of the bio-medical disease model;
• the centrality of psychoactive medications in “treatment as usual” or TAU;
• the social control function of the mental health system, as codified in State laws and Federal regulations;
• the fear and contempt of persons given serious mental illness diagnoses that permeates the system and U.S. culture.

I’ve listed the foregoing as a series of inter-connected dominoes, beginning with those elements I consider more vulnerable to first order change and proceeding with those that are fundamental to the system’s continued existence and that will require second order change. As must be evident, this is a daunting task and will require years to accomplish. Reforms, in the guise of innovative treatment approaches, are important to keep hope alive among those of us who want to see these systems changes take place; but, alone, they will not bring about lasting change since the system’s power brokers will eventually deform and co-opt the innovations.

Take it from someone who’s lived through the Federal poverty program, the Community Mental Health Center movement, and New York State’s Intensive Case Management Program and the statewide introduction of psychosocial rehabilitation ideology. Ultimately, the powerless “rest of us,” particularly those I’ve identified as “users of service” and number roughly 50 million persons in this country, have to undergo the dialectic organizing process I outlined above and transform ourselves into a potent political force.

When we launched the DSM-5 Boycott, some folks characterized our effort as a tactic aimed at costing the APA revenue and supporters. As per the foregoing, it’s also part of a strategy that dwarfs the capacity of our Committee, requires the forging of many alliances, and will need to continue beyond my lifetime. Accordingly, we consider the Boycott the first step of many. We chose to focus on the new DSM and the APA because, among the big four, the APA appears the most vulnerable. When the DSM-5 Task Force closed the books on the new DSM, the APA found itself obliged to admit that it had failed once again to gather enough evidence to support the neurobiological illness paradigm it has been attempting to establish for the past twenty-plus years.

The APA and its biological model still have no clothes and the DSM still lacks its long-awaited biomarkers. The APA had also promised to develop a “multi-dimensional” construct to add nuance to its disease classifications after discarding DSM-IV’s largely disregarded “multi-axial” methodology. Apparently, the new dimensions only managed to mystify certain members of its DSM-5 Task Force, several of whom resigned in disgust. All in all, a pretty bad turn of events for the APA, which compensated for what it had lost by adding a host of new diagnoses to the DSM-5 that will serve to pathologize the ordinary behaviors of millions of persons around the world.

As per the analysis I posited above, our next systems change step requires us to challenge the DSM’s nosology or its classification of diagnoses and presumed mental illnesses, its – and the APA’s — very reason for existing. We will proceed to do what we had considered doing when we launched the Boycott, attaching a “no-diagnosis” pledge to the Boycott and compiling a nationwide, state-by-state list of practitioners who agree not to assign diagnoses to the folks who’ve come to them for help. (In those instances where a diagnosis must be given to secure insurance reimbursement for services rendered, we will advocate Paula Caplan’s recommendation that a diagnosis be collaboratively arrived at and agreed to by the helping practitioner and the user of service.) Our fundamental contentions are that diagnoses not supported by scientific evidence but concocted to jibe with factitious illnesses are meaningless; irrelevant to the problems presented and the help required; and damaging to the self-identity of the person seeking help.

It’s at this point that our campaign, assuming we’ve gotten this far, must become overtly political. And to whom better to present all the signatures and pledges we manage to compile than to the 1000 pound gorilla of the bunch, the final arbiter of who gets paid what, the Federal Government and the Department of Health and Human Services (DHHS)? Our message will be that the APA and its DSM have lost the trust and confidence of the practitioners who are presumed to rely on the DSM to guide their efforts and of the persons they and the DSM purport to help. And what better time to do so than early next year, sometime before the ICD-10 finally goes into effect on October 1, 2014, twenty years behind the rest of the world? (For those of you who may not know, the International Classification of Diseases (ICD) is a publication of the U.N.’s World Health Organization (WHO), whose coding system has been adopted by all member nations of the U.N. via treaty to ensure uniformity of diagnosis worldwide and promote effective epidemiology and heath care delivery. It has been used in the U.S. primarily to promote uniformity of third party insurance reimbursement by Big Insurance and CMS.)

It can be anticipated that the DHHS will find itself in a vulnerable position at that time, besieged by professional organizations and provider agencies and by Big Insurance that will continue to oppose the ICD-10 until revisions favorable to their interests have been made. As Jon Abramowitz recently pointed out, ICD-10, designed by the World Health Organization (WHO) to promote better heath outcomes, will change all the current ICD-9 codes, which were designed to facilitate billing. Big Insurance and their hospital and physician allies have been fighting adoption of the ICD-10 for the past twenty years, when the rest of the world began using it. Why should they stop now?

We intend to intrude on this happy gathering, supporting DHHS’s intent to adhere to its October 1, 2014, adoption of the ICD-10, but urging that it remove from the new ICD all behavioral health codes. After all, if those codes represent factititious disease entities, they serve neither treatment nor epidemiological purposes. Why adopt them? If DHHS needs to revise the ICD-10 to address the needs of practitioners and patients in the U.S., why not revise the behavioral health codes out of the U.S. version of the new ICD? A rather ambitious undertaking, but one that, should it succeed, would alter the relationships of the biggest players in the U.S. health care system. It’s one, of course, that will require a much larger group of supporters and allies than we can currently muster and might not be able to assemble in a year’s time. Nonetheless, it would be worthwhile to put this issue before those entities – DHHS and the U.S. Congress – that have the power to make binding decisions on these matters. Remember, we’re all prisoners of hope.

Time will tell; and our involvement in the change ←-→ permanence dialectic over time will bring with it challenges and opportunities that we can’t foresee. Should we succeed in addressing these challenges, we will grow and can pursue the agenda I’ve set out above. Should we fail, so long as we remain part of the dialectic, we and others will learn and the struggle for change will continue. Support the Boycott of the DSM-5; send a message of protest to those who would impose our destiny from above. Don’t mourn, organize.

References:

Abramowitz, J., “The Road Ahead …,” “The Road Behind …,” “To Buy or Not To Buy …,”
posted, respectively, February 13, 14, 15, 2013, at http://1boringoldman.com/index.php/2013/02/13/the-road-ahead/