I had the good fortune to be working at a dynamic Recovery program for adults beginning in 1990. I passionately believed that not only does recovery happen – but that we would be able to demonstrate it by reporting significant improvements in quality of life outcomes such as employment, housing and social supports. The program’s commitment to Supported Employment, for instance, was emphatic and we took pride in doing “whatever it takes” to support our members’ integration into the community. The Recovery movement was just taking root in California and throughout the U.S.
When I look back on the following 19 years, I can’t help but feel some sense of disappointment about the overall outcomes — especially employment. Maybe I was overly optimistic, but the average rate of competitive employment (full and part-time) reported by the program has hovered between 10 and 20 percent. I had always expected it to be much higher. Many other newly established recovery programs reported similar, underwhelming results.
In the early years, Courtenay Harding joined us to share results from her Vermont study debunking the myths of schizophrenia as a progressively deteriorating, hopeless disease. She reported that a full 34% of the 269 discharged patients from the hospital’s back wards were in recovery, working in the community and off psychotropic medications. Whitaker called attention to Martin Harrow’s long term study that revealed 39% of the participants were off meds and in recovery (compared to 5% on meds) and 60% were working.
The phrase that stands out to me from these studies is “symptom remission without functional remission”. In other words, people experiencing hearing disturbing voices, feeling overwhelming anxiety or black moods reported a lessening of symptom severity – but were still not rejoining our work-forces and communities. I recall several people that I worked with closely, who indicated that much of their emotional distress had faded along with their future goals and passions.
Now, don’t get me wrong. This innovative program never fixated on diagnoses, nor on insisting upon pharmacological treatments of them. Choice, empowerment and shared decision making were bedrock values, so you wouldn’t hear many conversations about non-compliance. Still, multiple prescriptions for psychotropics were more common than not. This was the case for virtually all of the other psychosocial rehabilitation programs I was familiar with as well. Each of them offered the same biologically based standard of care for people diagnosed with bipolar disorders, schizophrenia and depression.
The discomfiting thrust of Whitaker’s books and the research literature suggests that psychotropic medications have played a major role in undermining the long-term outcomes of consumers. It appears that if someone is experiencing psychiatric problems, they might have a better chance of finding a meaningful role and recovery by avoiding or escaping the mental health system altogether. Has the Recovery movement been compromised by the continued reliance on pharma-centric approaches? It may be a gross oversimplification to attribute anemic employment results to just the use of psychotropics — Crushing poverty, a difficult economy and stigma come to mind — But the evidence points to medications being more of a stumbling block than a step up. The Recovery movement is overdue for a new road map.
“Has the Recovery movement been compromised by the continued reliance on pharmacentric approaches?”
I think you know the answer to your own question. Every bit of good research, not the stuff put out by the drug companies or biopsychiatry, points directly to an overwhelming YES!
Prior to the advent of the toxic drugs people would experience one episode of psychosis and eventually they would move back into their lives and continue on. Not everyone accomplished this but large enough numbers did to be significant. With the toxic drugs what was once episodic was morphed into something that became chronic.
I saw this personally dealing with a very close member of my immediate family. This person became distressed and supposedly “psychotic” in their late teens. The person spent a number of months in a psych ward, where she painted and created art on a daily basis. The psychiatrist made sure that my family member had the art supplies she needed and paid for them from his own pocket. The person was released from the hospital, came home, AND NEVER HAD ANOTHER EXPERIENCE OF SUPPOSED “PSYCHOSIS” for the rest of her life. She died at the age of 72 from emphysema but never experienced another problem with supposed “psychiatric issues.”
Thank goodness her hospitalization happened prior to the arrival on the scene of the damned drugs! Her life from then on was productive and she enriched the lives of so many others through her compassion and wisdom. She was a Wise Woman who was greatly loved by many, many people. There’s not a day that goes by that I don’t bless the memory of that psychiatrist who encouraged this woman to paint her way out of her distress. He was truly a great doctor in every sense of the term.
The psychotropic drugs certainly have long-term consequences: memory loss, cognitive dysfunction, etc. I fully support delayed administration of psychotropics and the restriction of settings in which they are employed. Simple sleep aids such as Benadryl should be the front-line defense against sleep deprivation in mania and psychosis.
That being said, we absolutely cannot discount the crushing stigma. The judgment, abilities, and the contributions of people diagnosed with mental illness are discounted by our society. This is pernicious. It means that people diagnosed with mental illness will almost always be passed over for employment when the employer has an alternative. Try concealing the health history of the people you are trying to help. I guarantee it will improve their chances of getting a job.
Just to explain how pernicious this is, I will illustrate with my own experience. I have a Ph.D. from one of the best universities in the world. I can trounce most mental health professionals on test of cognitive ability. And despite this, or perhaps because of this, I have had a mental health professional question to my face that I have a Ph.D. Their excuse was simply that they did not have anyone with which to verify my story of having a Ph.D. This was stated despite the fact that a simple web search will find my dissertation which was published by my university in a publicly available database of dissertations. It is clear to me that some members of society are only interested in doubting, in stripping people of their achievements, in perpetuating stigma, and not in fact or even in recovery.
This kind of stigma makes its own truth: it makes people worthless by denying their abilities, robs the value from people’s professional achievements, takes away jobs, and denies employment.
Psychiatric staff are trained to believe that you can never believe anything that a “mentally ill” person says. The psych you dealt with probably went and told the staff that you were experiencing grandiosity because you believed that you had a Ph.D.
I had an experience very similar to yours. I was a hospital and nursing home chaplain. I’d been trained in both medical and pysch settings. When I was admitted to the unit of the hospital the nurses were telling me how I needed to behave and I informed them that I was a chaplain trained in psychiatric settings and knew what was expected of me. The next morning I was meeting with my psychiatrists and the social worker sent to do my social history just happened to be a very dear and old friend of many years. She’d once been a chaplain too.
As she waited for me to get out of my meeting she overheard the nurses talking about what a big liar I was, that I wasn’t a chaplain and I’d never been trained in a psych hospital. I was just lying. She stepped up to the nurses’ station and proceeded to inform them that I was everything that I’d stated and that if she heard any more conversations like she’d just listened to she would report them for unprofessional behavior. She said they all ran off into the conference room behind the station and hid!
Thanks for sharing your experience. You are absolutely correct in your observations of our present situation. When I got out of the hospital I found a job four days later. The manager who hired me asked about the gap of time in my work history and I was very frank with him about having been in the hospital. He hired me anyway but told me that I’d be wise to never let any others know what I’d shared with him. He was truly enlightened but he felt that he was not the average manager out their in job land.
One more little story and then I’ll quit! I know a woman therapist who has been hospitalized numerous times. She’s a delightful person, well educated like yourself and very personable. She shared that during one of her hospitalizations she made a statement on the unit where she was held that her father was a doctor. A psychiatrist overheard her remark and shouted at her “That’s a lie!” Her response was “What, that I had a father or that he was a doctor?!”
Great points. Stigma is a powerful blinder.
The irony is that we are endlessly told that with knowledge stigma will be eradicated yet it is practitioners and those in the medical field who often have the most prejudiced views of consumers.
I agree with Stephen. Part of the reason that we still have pharma-centric approaches is because of the stigma. People are not actually allowed freedom of choice in terms of medication, because the pernicious stigma questions their judgement.
Too rarely are the outcomes fostered by mental health programs given the slightest consideration. Wayne should be congratulated for considering the outcomes for this program, possible causes, and remedies. And it made me think back ….
In 2006 I attended a presentation given by two representatives of an employment program for consumers. I asked about outcomes. I was presented with the usual annecdotes, “Let us tell you about Billy ……” but pressed on as I sought information on outcomes as a whole.
After several months this program which had received almost $3 million to date provided the following:
# of consumers who received direct services: 871
# of consumers who got jobs (includes full-time, part-time, volunteer): 307
# of consumers who stopped receiving SSD/I because of employment: 14
# of consumers who were still working at 3 month follow-up: 242
It was never made clear how many individuals were actually working full or part time at competitive wages. That fourteen individuals had likely met the SGA standard ($860 monthly in 2006) at some point was cold comfort where 871 consumers had invested themselves in this program.
This may surprising – but in my experience, those outcomes would qualify that program as top notch. Most supported employment programs I’m familiar with report much lower percentages.
In fact, the program I cited won an award.
I just wish that programs of all stripes wouldn’t broadly represent outcomes that are evidenced narrowly. The community at large is left with impression that consumers afforded every opportunity and resource for success generally fail. (This is similar to when we failed our medications which were always safer and more effective.)