More from Pat Deegan

When Help is Not Helpful

Help, and in particular toxic help, is not a topic that is discussed often in professional rehabilitation cultures. The nature of help is one of those topics about which we are often silent because we are too busy being helpful to stop to talk about it. But we must break that taboo. We must dare to talk about help because power, including the power to oppress, often disguises itself as help. Power-disguised-as-help is used to silence disabled people. Paolo Freire (1989) says that oppressive power submerges the consciousness of the oppressed into a culture of silence. Toxic help oppresses and silences people with disabilities.

Help isn't help if it's not helpful. Help that is not helpful can actually do harm. Being helpful requires that professionals ask us what we need. But asking is never enough. Professionals must also listen to what we say. In this way help becomes something that is co-created between the disabled person and the professional. When help is co-created as an explicit agreement between the professional and the individual, then silencing is avoided.

In my opinion, one of the best methods for amplifying the voice and values of those of us who are disabled is the shared decision making process. In this process, the clinician and service user come to agreement on *what the service need is, what the course of rehabilitation will be, what the desired outcomes of services are and what the respective responsibilities of each party will be in achieving those outcomes. It seems to me that the shared decision process is more than a method. It is an ethical obligation that makes explicit the power of the professional and brings it into alignment with the voice and directives of the disabled person.

Micro-Aggressions

[note: "Mentalism refers to the oppression of people who have been diagnosed with psychiatric disorders."]

Peer practitioners may encounter mentalism in all its forms when on the job. In its most obvious form, mentalism is a macro-aggression. A macro-aggression is obvious and easily identified by all who witness it as unfair, biased and/or discriminatory. An example of a mentalist macro-aggression is an emergency room automatically placing people with psychiatric diagnoses in restraints while waiting to be seen by a physician or having only clients (not staff) go through a metal detector at a local mental health center.

Another form that mentalism can take is called micro-aggression. Micro-aggressions are more subtle, not as obvious and therefore are harder to point out or confront. Mentalist micro-aggressions occur frequently and have a tendency to wear us down over time. Micro-aggressions tend to be “invisible” and we often experience the cumulative effect of them as tension between ourselves....

Most peer practitioners will encounter micro-aggressions on the job. How should staff handle these types of experiences and still remain within the role of the peer practitioner? The answer is that first peer practitioners must be able to identify micro-aggression when it happens. This requires consciousness raising and a supportive group of peer practitioners who can help us name mentalism when it is happening. Secondly, peer practitioners must support and validate for each other, the reality of mentalist micro-aggression when it is reported by a co-worker. Third, peer practitioners must learn to strategically respond to those people or policies that are oppressive, whether it was intentional or not.

Healing Relationships

Relationships are the cornerstone of the recovery process for most people. Relationships that are marked by kindness and compassion can heal. ... In a culture steeped in the belief that there is a “pill for every ill”, it can be important to remind ourselves of the healing power of human relationships.

The people I have interviewed mention certain important characteristics of people who were experienced as helpful in their recovery. Many said the helpful person showed fortitude, patience and love. For instance, John said:

“Relationships helped me. Patience. Sticking by you regardless. Like my wife. Sticking by you through thick and thin. Constant support. Constant encouragement from the outside. That's what I think a person needs the most. And love.”

Fidelity, patience and fortitude are evident when the helpful person is present during the most difficult of times and does not simply come around when recovery seems promising. People who are experienced as helpful are able to hold the relationship during times when the other does not reciprocate affection and care. This holding of love and relationship, even during the most barren and anguished winter of recovery, requires compassion. The word compassion comes from the Latin passio, to suffer and com, to be with. To be compassionate is to suffer with the person in distress. To be compassionate is a way of being with the other without an agenda to change them, to relieve their suffering or to suffer for them. Through compassion we can reach out to the other even when they refuse to reach back. With compassion we see the person, not the diagnosis or disorder....

Another characteristic of people who are helpful to the recovery process is that they believe in the person in distress, even when that person does not believe in themselves. Believing in the other is not expressed in optimistic rhetoric such as, “I just know that in time you will do better.” Shallow optimism ignores the challenges and difficulties that the person in distress faces. Optimism may help us feel better, but it leaves the other alone and distanced. Believing in someone, on the other hand, takes the form of a fundamental affirmation of that person's goodness. It is a hopeful stance that admits the the future is uncertain and ambiguous while simultaneously expressing a willingness to walk together into that unknown future....

People who are helpful to the recovery process are able to convey feelings and are experienced as being very human. No one reported that professional distance and demeanor were helpful. Instead, our own humanity is the bridge that connects us to people in distress. Sometimes humor can form a connection of warmth, joy and affection....

Relationship includes the idea of mutuality and reciprocity. This can be very healing for people who have been in the patient or client role for a long time. That is, being socialized into the role of a “good” mental patient often means learning to become preoccupied with matters pertaining to “me”. Socialization into self-preoccupation starts in the hospital where each day begins with a nurse asking you if your bowels are moving, if you slept that night, etc. Socialization into me-ness proceeds on through the years as each and every casemanager, therapist, residential worker or vocational rehabilitation counselor asks, “How are you doing?” Unlike normal social discourse in which 'how are you doing' acts as a perfunctory greeting, mental health discourse requires the client to take the question seriously and to answer by revealing more about “me”. In addition, in most mental health settings, clients are not encouraged to help each other or anyone else. In this sense, the currently popular term “consumer” seems apt. It conjures the image of a large mouth consuming and consuming without a hint that it would be possible to contribute something back.

Socialization into me-ness, self-preoccupation and being a consumer means that many people are denied the opportunity to discover they have something to offer to other people. This iatrogenic wounding is another reason relationships can be so healing. It is healing to learn that one needs and is needed, cares and is cared for, and can receive as well as give.

Recovery and the Conspiracy of Hope

I think Pat Deegan does a great job describing the cycle of despair in settings that don't facilitate or witness recovery. I think this translates very well to addiction treatment providers. What it misses is those who step in after hope is abandoned and ennoblize the suffering of patients--"accepting them as they are", but never accepting them for what they can become.

From Recovery and the Conspiracy of Hope:

From the outside it appears that the person just isn’t trying anymore. Very frequently people who show up at clubhouses and other rehabilitation programs are partially or totally immersed in this despair and anguish. On good days we may show up at program sites but that’s about all. We sit on the couch and smoke and drink coffee. A lot of times we don’t bother showing up at programs at all. From the outside we may appear to be among the living dead. We appear to be apathetic, listless, lifeless. As professionals, friends and relatives we may think that these people are “full of excuses”, they don’t seem to try anymore, they appear to be consistently inconsistent, and it appears that the only thing they are motivated toward is apathy. At times these people seem to fly into wishful fantasies about magically turning their lives around. But these seem to us to be only fantasies, a momentary refuge from chronic boredom. When the fantasy collapses like a worn balloon, nothing has changed because no real action has been taken. Apathy returns and the cycle of anguish continues.

Staff, family and friends have very strong reactions to the person lost in the winter of anguish and apathy. From the outside it can be difficult to truly believe that there really is a person over there. Faced with a person who truly seems not to care we may be prompted to ask the question that Oliver Sacks (1970, p. 113) raises: “Do you think William (he) has a soul? Or has he been pithed, scooped-out, de-souled, by disease?” I put this question to each of us here today. Can the person inside become a disease? Can schizophrenia pith or scoop-out the person so that nothing is left but the disease? Each of us must meet the challenge of answering this question for ourselves. In answering this question, the stakes are very high. Our own personhood, our own humanity is on the line in answering this question.

...

However, when faced with a person lost in anguish and apathy, there are a number of more common responses than finding a way to establish an I-Thou relationship. A frequent response is what I call the “frenzied savior response”. We have all felt like this at one time or another in our work. The frenzied savior response goes like this : The more listless and apathetic the person gets, the more frenetically active we become. The more they withdraw, the more we intrude. The more willless they become, the more willful we become. The more they give up, the harder we try. The more despairing they become, the more we indulge in shallow optimism. The more treatment plans they abort, the more plans we make for them. Needless to say we soon find ourselves burnt out and exhausted. Then our anger sets in

...

Our anger sets in when our best and finest expectations have been thoroughly thwarted by the person lost in anguish and apathy. We feel used and thoroughly unhelpful. We are angry. Our identities as helping people are truly put to the test by people lost in the winter of anguish and indifference. At this time it is not uncommon for most of us to begin to blame the person with the psychiatric disability at this point. We say things like : “They are lazy. They are hopeless. They are not sick, they are just manipulating. They are chronic. They need to suffer the natural consequences of their actions. They like living this way. They are not mad, they are bad. The problem is not with the help we are offering, the problem is that they can’t be helped. They don’t want help. They should be thrown out of this program so they can 'hit bottom'. Then they will finally wake up and accept the good help we have been offering.”

During this period of anger and blaming a most interesting thing happens. We begin to behave just like the person we have been trying so hard to save. Frequently at this point staff simply give up. We enter into our own despair and anguish. Our own personhood begins to atrophy. We too give up. We stop trying. It hurts too much to keep trying to help the person who seems to not want help. It hurts too much to keep trying to help and failing. It hurts too much to keep caring about them when they can’t even seem to care about themselves. At this point we collapse into our own winter of anguish and a coldness settles into our hearts.

We are no better at living in despair than are people with psychiatric disabilities. We cannot tolerate it so we give up too. Some of us give up by simply quitting our jobs. We reason that high tech computers do as they are told and, besides, the pay is better. Others of us decide not to quit, but rather we grow callous and hard of heart. We approach our jobs like the man in the Dunkin Donuts commercial: “It’s time to make the donuts, it’s time to make the donuts”. Still others of us become chronically cynical. We float along at work like pieces of dead wood floating on the sea, watching administrators come and go like the weather; taking secret delight in watching one more mental health initiative go down the tubes; and doing nothing to help change the system in a constructive way. These are all ways of giving up. In all these ways we live out our own despair.

Additionally entire programs, service delivery systems and treatment models can get caught up in this despair and anguish as well. These systems begin to behave just like the person with a psychiatric disability who has given up hope. A system that has given up hope spends more time screening out program participants than inviting them in. Entry criteria become rigid and inflexible. If you read between the lines of the entry criteria to such programs they basically state: If you are having problems come back when they are fixed and we will be glad to help you. Service systems that have given up hope attempt to cope with despair and hopelessness by distancing and isolating the very people they are supposed to be serving. Just listen to the language we use: In such mental health systems we have “gatekeepers” whose job it is to "screen" and “divert” service users. In fact, we actually use the language of war in our work. For instance we talk about sending “front-line staff” into the “field” to develop treatment “strategies” for “target populations”.

Is there another alternative? Must we respond to the anguish and apathy of people with psychiatric disability with our own anguish and apathy? I think there is an alternative. The alternative to despair is hope. The alternative to apathy is care. Creating hope filled, care filled environments that nurture and invite growth and recovery is the alternative.

Remember the sea rose? During the cold of winter when all the world was frozen and there was no sign of spring, that seed just waited in the darkness. It just waited. It waited for the soil to thaw. It waited for the rains to come. When the earth was splintered with ice, that sea rose could not begin to grow. The environment around the sea rose had to change before that new life could emerge and come into being.

People with psychiatric disabilities are waiting just like that sea rose waited. We are waiting for our environments to change so that the person within us can emerge and grow.

Those of us who have given up are not to be abandoned as “hopeless cases”. The truth is that at some point every single person who has been diagnosed with a mental illness passes through this time of anguish and apathy, even if only for a short while. Remember that giving up is a solution. Giving up is a way of surviving in environments which are desolate, oppressive places and which fail to nurture and support us. The task that faces us is to move from just surviving, to recovering. But in order to do this, the environments in which we are spending our time must change. I use the word environment to include, not just the physical environment, but also the human interactive environment that we call relationship.

From this perspective, rather than seeing us as unmotivated, apathetic, or hopeless cases, we can be understood as people who are waiting. We never know for sure but perhaps, just perhaps, there is a new life within a person just waiting to take root if a secure and nurturing soil is provided. This is the alternative to despair. This is the hopeful stance. Marie Balter expressed this hope when asked, “Do you think that everybody can get better?” she responded: “It’s not up to us to decide if they can or can’t. Just give everybody the chance to get better and then let them go at their own pace. And we have to be positive - supporting their desire to live better and not always insisting on their productivity as a measure of their success”. (Balter 1987, p.153).

So it is not our job to pass judgment on who will and will not recover from mental illness and the spirit breaking effects of poverty, stigma, dehumanization, degradation and learned helplessness. Rather, our job is to participate in a conspiracy of hope. It is our job to form a community of hope which surrounds people with psychiatric disabilities. It is our job to create rehabilitation environments that are charged with opportunities for self-improvement. It is our job to nurture our staff in their special vocations of hope. It is our job to ask people with psychiatric disabilities what it is they want and need in order to grow and then to provide them with good soil in which a new life can secure its roots and grow. And then, finally, it is our job to wait patiently, to sit with, to watch with wonder, and to witness with reverence the unfolding of another person’s life.

Mad Pride: Mental illness and recovery

The NY Times has an article on anti-stigma efforts by mentally ill people.

This caught my attention in relation to all of the attention that harm reduction has been getting recently. There has also been a mental illness consumer advocacy movement demanding a recovery orientation in mental health services. This movement emerged in response to psychiatry's harmfully low expectations for people with serious mental illness.

I see a parallel.

The business of treatment

Apparently there has been some turmoil at Hazelden over a new CEO's modernization of their business practices. It doesn't offer much detail, but here's a little history:

It started in 1949 in a farmhouse where men followed a recovery program based on the Twelve Steps of Alcoholics Anonymous. Teams of psychologists, chaplains and clinicians developed an approach that was copied worldwide.

But by the time Jerry Spicer became chief executive in 1992, managed-care companies had decided they didn't like what had become known as the Minnesota Model, with its costly, long-term inpatient approach. They preferred cheaper short stays and outpatient care. Hazelden felt the cost pressure. Hundreds of other centers closed or downsized.

An outsider moves in

A decade later, Spicer's successor, health care executive Nick Hilger, lasted one year. In 2002, Breyer was plucked from Hazelden's board and made president and chief executive.

She had been vice president for marketing at Ryan Companies, a commercial real estate developer. Breyer brought an outsider's corporate sensibilities to the insular treatment field. Hazelden inked a contract with Blue Cross and Blue Shield of Minnesota, which now brings in about 30 percent of Hazelden's patient revenue.

That Blue Cross contract opened the floodgates to insured patients but squeezed out those at the high and low end. Therapists and alums used to referring patients wouldn't always get their self-paying patients in the door. At the opposite end, charity care fell.

Still, it was hard to argue with the numbers: In 2007, Hazelden had operating revenues of $109.3 million and a record 10,754 patients. Donors gave a record $12 million.

Despite Hazelden's traditional devotion to abstinence-based treatment, Breyer approved use of new pharmaceuticals to treat addiction.

She won some fans. "People generally thought highly of Ellen," said Jill Wiedemann-West, Hazelden's senior vice president and chief operating officer of clinical and recovery services. "She brought a vision."

...

In 2006, Breyer brought in the Hay Group, New York consultants who grouped Hazelden's activities into three "strategic" businesses: treatment, publishing and the graduate school. Fundraising was a fourth important area.

"Trying to get your hands around that organization was like trying to sort stuff out of cotton candy," Hunsicker said. "Ellen, for good, better or worse, rolled up her sleeves and said I'm going to build some accountability."

That year, the National Association of Addiction Treatment Providers named Breyer Administrator of the Year.

By the next year, Hazelden executives began leaving.

General counsel Ivy Bernhardson became a Hennepin County judge. Carol Falkowski, director of research communications, is now director of chemical health at the Minnesota Department of Human Services. Both declined to be interviewed.

Chief Medical Officer Dr. Marvin Seppala left to head an in-home treatment program. Vying to return as Hazelden's chief executive, he declined to talk.

Mike Ranum, chief financial officer and chief administrative officer, joined an architectural firm in St. Paul. He did not return calls for comment. Nor did Tom Galligan, former market development chief.

All left, Breyer said, because of other opportunities. The departures "had very little, if anything, to do with me," she said.

Moyers, working on public policy, had become Hazelden's most recognizable public face. He also tried to leave last year but stayed after Hazelden funded a Center for Public Advocacy and put him in charge.

But to others, she represented a break from the Hazelden of old, where being in recovery was a credential as good as any fancy academic degree.

"The addiction field has been known for its warmth, its compassion, its affirmation," said Hunsicker. "Ellen brought with her a bit of an aloofness."

These are strange times in the field of addiction treatment. In the wake of the collapse of much of the addiction treatment system, many are seeing financial opportunity. Prometa, tv shows like Intervention and Celebrity Rehab, boutique treatment programs for the rich and famous, recovery coaches for hire, etc. There's a trade publication with cover stories like, "The King of Methadone" and "The Big Money Cometh". The magazine celebrates the business of addiction treatment, "high end" providers, and focuses one the scores of acquisitions that are creating some enormous companies with enormous profits.

It seems to be an era of entrepreneurship in addiction treatment and I find that pretty frightening.

The article didn't say much about what exactly is changing within Hazelden's culture. Smart business practices don't have to mean abandoning their mission, hopefully Hazelden will avoid some of the pitfalls that many other providers seem to be stepping in. Although, it's worth noting than many people think that Hazelden was one of the first providers to turn treatment and recovery into big business.

Science and Harm Reduction

I'm stepping into it here, but the rush of these articles (here and here are two examples) proclaiming Insite's empirical goodness (my word, not theirs) is getting on my nerves. The implication is that any critic is motivated by moral panic or some evangelistic impulse. (Many critics fit these characterizations. I'm bothered by them too.)

The first clue that something isn't quite kosher is this line, "A scientific review at the XVI International AIDS Conference in Toronto on August 15 became the scene of an emotional outpouring of support for Insite, Vancouver's supervised-injection site."

Let me be clear. I think that there can be a place for a program like Insite, especially in a city with HIV rates like Vancouver, but context matters.

"Success" depends on how one defines "success", doesn't it? Science supports the use of opioids to reduce pain in cancer patients. Is that an adequate response to cancer? We can create situaltions where the surgery is a success but the patient dies.

Many harm reduction advocates accuse critics of having a value-laden perspective on drug problems. I agree. I'm suggesting that values drive harm reduction activities as well. Public health has its values too. For example, it tends to focus on disease transmission, it tends to focus on communities rather than individuals, and can, at times, reduce decisions to an accounting exercise. One extreme example is medicalization of female circumcision.

I'd encourage all providers working with addicts to identify the values that drive their practices. We've done it, here.

So, Insite is fine with me, as long as it is used as a place to engage addicts and move them incrementally toward recovery. To do so, you have to have a lot of other pieces in place. I may be wrong, I'm 3000 miles away, but I get the sense that there is a lot more enthusiasm for harm reduction than for recovery.

These agruments might get put to rest if they tried a both/and approach.

Racial Inequity and Drug Arrests

A NY Times editorial on the insanity of the drug war and its disproportionate impact on communities of color.

Now, two new reports, by The Sentencing Project and Human Rights Watch, have turned a critical spotlight on law enforcement’s overwhelming focus on drug use in low-income urban areas. These reports show large disparities in the rate at which blacks and whites are arrested and imprisoned for drug offenses, despite roughly equal rates of illegal drug use.

Black men are nearly 12 times as likely to be imprisoned for drug convictions as adult white men, according to one haunting statistic cited by Human Rights Watch. Those who are not imprisoned are often arrested for possession of small quantities of drugs and later released — in some cases with a permanent stain on their records that can make it difficult to get a job or start a young person on a path to future arrests.

...

Between 1980 and 2003, drug arrests for African-Americans in the nation’s largest cities rose at three times the rate for whites, a disparity “not explained by corresponding changes in rates of drug use,” The Sentencing Project finds. In sum, a dubious anti-drug strategy spawned amid the deadly crack-related urban violence of the 1980s lives on, despite changed circumstances, the existence of cost-saving alternatives to prison for low-risk offenders or the distrust of the justice system sowed in minority communities.

Nationally, drug-related arrests continue to climb. In 2006, those arrests totaled 1.89 million, according to federal data, up from 1.85 million in 2005, and 581,000 in 1980. More than four-fifths of the arrests were for possession of banned drugs, rather than for their sale or manufacture. Underscoring law enforcement’s misguided priorities, fully 4 in 10 of all drug arrests were for marijuana possession.

One quibble. I do wish that these advocacy pieces would be consistent in distinguishing between arrests and incarceration. An arrest that results in a drug court, or a sentence to treatment and probation is very different that an arrest that results in a jail or prison sentence.

[hat tip: Matt Statman]

The American treatment system

A presentation from the Recovery Symposium I linked to the other day included this nugget.

Is Food Addictive?

From Slate:

As neuroscientists focus their attention on obesity, you can expect to see morestudies comparing food cravings to drug addiction. As these studies accumulate, you can expect to hear them cited in campaigns to regulate junk food.

Great Stuff

Here's a library of resources from the recent recovery conference in Philadelphia.

Of special note is this article: The Role of Clinical Supervision in Recovery-oriented Systems of Behavioral Health Care. It includes several references to Dawn Farm.

Powder cocaine comeback

This is certainly consistent with what I've been seeing in my intake interviews. I went years with very few mentions of recent powder cocaine use, but lately it's coming up every day.

Speedy Decline

A FEW years ago Pierce county, in Washington state, was in the grip of a methamphetamine epidemic. Toothless addicts roamed quiet rural roads, stealing everything that was not nailed down, ... “It was behind every bush,” she [the Sheriff] says.

The life cycle of the "meth epidemic" is an interesting story and I don't have my head wrapped around it yet, but the media's use of sensation and stigmatizing language has certainly colored attitudes and perceptions. The intro to this article makes it sounds like the film 28 Days Later.

I think that it's safe to conclude that there have been some successes in shortening the life cycle, but it's important to remember that drug use patterns are cyclical.

[via DailyDose.net]

Friend or foe? Drunk, the brain can’t tell

A new study exploring why people do risky things when they're drunk.

Housing First

There was an Op-Ed in today's USA Today advocating the housing first approach with "chronic public inebriates" (CPIs).

I have no objection to housing first is they continue to try to facilitate recovery. I'm uncomfortable with programs that place NO contingencies on the housing. I think there ought to be some expectation of at least minimal particiation in treatment or recovery support services. If a program opts not to place those contingencies on housing, they ought to at least continuously encourage use of those services/resources--looking for windows of opportunity. Housing is not enough.

The reason many programs seem to wince at this suggestion seems to be philosophical. They believe that addiction doesn't cause homelessness. Gentrification, racism, sexism, domestic violence, and other societal problems cause homelessness. That homelessness is not caused by individual factors, but community conditions. Therefore, to focus on their addiction is to blame the victim.

I also worry two other things. Financial considerations are important, but we shouldn't reduce these decisions to accounting exercises. We also need to be careful that these programs don't send messages to clients and the community that CPIs are hopeless and fan the flames of stigma.

Other posts on housing first here.