I have decided that I want to be a seeker after the truth. There a are lot of ideological positions in mental health, and I want to find the truth somewhere in the middle. Some of this is common knowledge in mental health care, but these are some of the topics I have been pondering in the last few months.
One thing weighing heavily on me now is that many people in the consumer movement believe in the research that shows that ECT (electroconvulsive therapy, or shock treatment) is ineffective and causes brain damage, yet the procedure is still performed. One of the problems with ECT research is that people who are doing lots of ECT, and therefore publicly profess to believe in it, are the only people able to study its effects. Yet on the other hand, I am an ECT survivor (7 of them) and I don’t think I was brain damaged except for my year of lost memory. I do think that peer support at my times of need would have been much more effective at a fraction of the cost. So the truth about ECT must be somewhere in the middle, and I think a truly informed consent is necessary that acknowledges that some non-negligible minority of people never fully recover their complete cognitive abilities. This is especially poignant to me right now I know a person who recently got ECT’s out of desperation. He would have been a really good candidate for Dialectical Behavioral Therapy, but couldn’t persuade Medicaid to pay for it in time. Instead they were willing to pay $10,000 each for his series of ECT’s. This may have led to his eventual death, as continued memory and cognitive problems plagued him afterwards and gave him extra worries about returning to school.
Another ideological position regards medication. Mind Freedom is an advocacy organization that has put out a brochure with a headliner that says, “Does your mental health system need a truth injection?” This brochure says “It is speculation” to say that mental illness is caused by a chemical imbalance. It says that the long term effectiveness of medications has not been demonstrated in scientific studies, that medications cause withdrawal effects, and many people do better without medications. All these statements are true and supported by current medical research, although, like all truths, there is much involved with each statement. Many of us with mental illness have been permanently damaged by our medications (I have tardive dyskinesia). Most people would be well advised to be very careful before starting meds and we should be more supported for medication withdrawals.
Yet on the other side of this debate is the Treatment Advocacy Center, a group that advocates for increased use of involuntary outpatient commitment. They discuss a lot of the dangerousness of people with mental illnesses and do a lot of advocacy in states after high profile crimes committed by people with mental illness. Some people say the outpatient commitment laws are extremely unjustly applied and 85% of people forced to take meds have never previously been violent. Many people in the consumer movement say that being forced to take medications that they believe are harmful and not effective is one of the worst experiences of their lives. However, the Treatment Advocacy Center cites a lot of research showing that people do not hate the mental health system for making them take meds, and that recovery is enhanced for some people, and crime is reduced. I talked with Fred Frese, one of the founders of the group, and he said that being forced to take meds was profoundly important to his recovery. I also used to handle a lot of information and referral calls at my former job for people who are unable to get help for family members who are erratic and possibly a danger and definitely need some kind of help. My aunt is raising three kids whose mom has untreated schizophrenia but still had a fourth kid after turning over the first three to the state. And the first three are great boys, and I need to take them camping or bike riding or go see their new dog. The truth about meds has to be somewhere in the middle.
I think mental health research and all research in general is in this state of denial, an unwillingness to acknowledge the whole truth. I think all of us on this planet are intricately connected. Al Gore’s An Inconvenient Truth said that 40% of the world gets drinking water from glaciers. Maude Barlow’s Blue Covenant that we could provide safe drinking water for the 2.5 billion people in the world without access for what the US spends on bottled water in one year. Instead huge multinational corporations are privatizing water supplies in developing countries and cutting off public taps. Sustainable agriculture is more productive, provides more jobs, is cheaper, and produces higher quality food. Yet the United Nations consistently funds 10 huge “Institutes” around the world that only do research on conventional methods. One of the reasons this continues is that many of us affected do not have a voice. The consumer movement is only barely heard in the mental health field. We want shared decision making, and access to complete and honest information about medications. We want people out of nursing homes and with personal care attendants. We want peer support and respite care instead of hospitalizations. We want to work and find a way off disability. Many suggestions made by the consumer movement would increase the sustainability of the mental health system by saving incredible amounts of dollars. Warmlines are much cheaper to operate than crisis lines and do more to promote recovery.
So where I want to go next is to give a voice to the voiceless. Oppressed peoples throughout the world need to be heard. This is the only way we’ll find a way to fix mental health, and to fix the planet. We have to hear those of us most hurt by the injustices. Farmers in India whose family wells have run dry have plenty to say about what needs to be done. I want to find this kind of knowledge, to be this kind of leader. A final line from one of my poems sums it up, “It will take people beyond compare to find a way that’s fair to share this planet …. that’s beyond repair.”