Tuesday, November 13, 2018

Comments by dengster

Showing 8 of 8 comments.

  • I agree with many of the points being made about othering people and using the language of mental illness and the DSM in pejorative ways to dismiss and demean people. I wouldn’t mind if we gave it all up.

    But, how can we then develop a common language to share our experiences with others that captures the uniqueness, individuality and diversity of our experiences as well as what we have in common.

    One thing I’d really like to see is to quit talking as though “psychosis” is the only experience called “mental illness”. There are all kinds of extremely distressing and debilitating experiences, behavior, thoughts, perceptions and emotions so the only issue here is not just “psychosis”.

    I also reject the notion that many of the signs or traits known as symptoms can’t be measured. Certainly, we can measure things like memory, concentration, pace of thoughts, lethargy, fatigue, comprehension, ability to read, write, eat, confusion, following directions, pain, repetitive thoughts and actions, having the sense of mastery over our thoughts, feelings, actions, ability to sleep, hours of sleep, levels of sleep, nightmares, a sense of calm, involuntary dwelling on past events and incidents, level of anxiety and fear, sociability, involuntary degree of fearfulness when faced with certain situations, etc.

    And when I say “measure” I don’t mean against someone else or some norm but to measure against a previous level of functioning that we desired and want to restore or work to achieve.

    And of course, many people can experience changes in functioning but disability depends on our ability to control these functions, and the degree to which we experience the changes to be extreme and for how long.

    These are all things that can be extremely distressing and debilitating to oneself that can make it impossible to meet our basic needs and/or carry out the kinds of activities we want to do.

    Drastic changes will exist for many of us no matter what we call that change or think about the change.

    So, how can we develop a common acceptable language outside of the medical model to assist people who need and want help and agree that the experiences of some are not the experiences of all.

  • Thanks for this encouraging report. As a user of mental health services who got trapped polypharmacy, I’m very happy to see this progress but disappointed that it is taking so long to take hold even in more progressive Scandinavian countries.

    I am not optimistic that programs like this will be available to help me in my lifetime in the US, though. I do often say however, that the best way to end coercion and force is to develop non-coercive and drug free alternatives that work for people who are suffering.

    If people in Norway and elsewhere are interested in how to work without drugs with people who become more agitated and aggressive, I would suggest looking at what is happening in dementia care.

    Since anti-psychotics have a black box warning for elders, they are not recommended for people with dementia or Alzheimer’s who also have memory loss, delusions, hallucinations, anxiety, and depression and also may become agitated or aggressive. Restraints are also not recommended.

    Therefore, the field is somewhat ahead of conventional psychiatry with trying to find ways to both calm and engage people who are living with dementia. I am familiar with the Best Friends approach and Green Houses.

    Since cognitive processes are impaired progressive providers are using more innovative ways to use all of the senses to communicate and connect with people with severe challenges. This is happening now and is being promoted and accepted in many places in the US.

  • I think I would qualify as being in the group that Allen Frances wants to speak for and I totally reject the notion. He should admit that he can only speak for himself and maybe for his profession but never for us. I would like him to see his main task as breaking down the barriers in the psychiatric system that prevent us from speaking and acting for ourselves. He could possibly, after rigorous soul searching, become an ally to those of us who currently identify as people with psychiatric disabilities or “serious mental illness” or whatever other nomenclature which might be used.

    As far as speaking in his role as a psychiatrist who was heavily involved in the development of the DSM IV and the perpetuation of the myth that the DSM contains scientifically based medical diagnoses, he has a lot to answer for. Countless people have been harmed, further disabled, rejected, dismissed, drugged, marginalized, being held down and subjected to forced injections, locked up, handcuffed, segregated, denied medical treatment, fired from jobs, denied professional licenses, added to federal government databases, bullied, beaten up, ended up in solitary confinement, tortured and even lost their lives because of being categorized as a person with a DSM diagnosis.

    If by some true change of heart and mind, he, or any other mental health professional who has decided that s/he really cares about us and our suffering, should be willing to engage in a process similar to the Truth and Reconciliation Commission in South Africa that was co-ordinated by Desmond Tutu. He needs to emotionally and intellectually listen to the stories of great suffering, persistence, courage, and survival of the oppression of people who have been harmed and take responsibility for his part in it.

    He would then have to ask for forgiveness and agree to fight against the oppression of the current psychiatric structure. He would have to be willing to flatten the psychiatric hierarchy. He would have to admit that psychiatry has very little to offer in terms of scientific evidence for what it does. He would have to admit that psychiatry knows very little about what causes people with or without diagnoses to become violent. He would have to admit that what is proposed by something like the Murphy bill would have little impact in terms of stopping mass shootings. He would have to admit that psychiatrists do not have any special expertise to accurately predict whether certain individuals will become violent.

    Next, he and others who want to ally themselves with us need to spend a lot of time listening to what we want in terms of alleviating the suffering we might be experiencing. Some of us don’t feel that we are suffering at all except from oppression and basically want to be left alone or given opportunities to get out of poverty and live lives that we find meaningful where our civil and human rights are respected and enforced.

    He also needs to listen to others of us who might want to use services and supports and agree to work with us to promote the supports that we need and want. It sounds to me like he doesn’t have a clue who we even are if he thinks that we all need forced interventions and that all of us have either been in jail or prison and other environments which are controlled by mental health professionals.

    There are millions of us who live our lives peaceably in the community and struggle because we don’t have access to much of anything that we feel is helpful enough to recover the lives we wanted to have prior to receiving diagnoses. Millions are begging for those kinds of voluntary services and get next to nothing. Why not work with us to pass laws that would give us a right to safe and effective voluntary treatment, support, and services of our choosing, including housing that would enable us to fully participate as members of our local neighborhoods and communities.

    Such supports would be based on a flexible interdisciplinary consumer-directed process that would facilitate rather than control our participation and integration into our community, our family, and our friends. They would have to lift all of us out the current system of poverty. Non-violent human connections and civil and human rights would be paramount.

    As one who would welcome such supports, I truly believe that much of what I need and would choose would have little to do with traditional psychiatry. I never really identified with the term “anti-psychiatry” a la Szasz or Foucoalt or anyone else. Maybe its because I hoped for such a long time that psychiatry would eventually, within my lifetime, discover the silver bullet. Well, forget that, even for a “compliant patient”.

    If I do use the term its not because of academic or professional theory and/or writings. Its because I have seen how psychiatry continues to destroy and shorten the lives of people I care deeply about. I’ve seen how it has wasted their lives by focusing on compliance, coercing them into expressing acceptable behavior and punishing or ridiculing anything deemed “inappropriate” or is against the many program rules or philosophy. Since I’ve been a witness to this injustice for a long time, I’ve seen how it has wasted people’s lifetimes by blaming the oppressed. I’ve seen how ineffective the pills and locked wards have been at preventing the suicides of my close friends. I’ve seen way too many premature deaths from related conditions.

    Truth be told, I think that the way psychiatry has been practiced in the previous two centuries would become irrelevant if we could provide access to non-violent trauma-reducing egalitarian and democratic supports within a community of people and institutions who value us. We need to be embraced no matter what our struggles or strengths are. We need to be able to develop our skills and have them be used. We need to provide access to a wide range of options so that we can find what heals our own soul and gives us meaning and purpose.

  • I just came across this in an article from “In These Times” by Noam Chomsky. I know there have been problems with Chomsky on our issues but I thought his article was pretty accurate. As I was seeing Andy Imparato’s belief about how we shouldn’t expect to change American laws with “outside” treaties, I thought about some of the work we did on nuclear proliferation years ago. Of course, that’s exactly what we did. We pushed the U.S. government to limit its nuclear proliferation in treaties between the U.S. and other countries.

    Anyway, here’s a portion of Chomsky’s article which quotes “Foreign Affairs” which of course, is a very mainstream publication. But, of course, its written by someone who is well-versed in dealing on the international level to create universal standards for all countries which should include the U.S.

    “In the latest issue of Foreign Affairs, the leading establishment journal, David Kaye reviews one aspect of Washington’s departure from the world: rejection of multilateral treaties “as if it were sport.”

    He explains that some treaties are rejected outright, as when the U.S. Senate “voted against the Convention on the Rights of Persons with Disabilities in 2012 and the Comprehensive Nuclear-Test-Ban Treaty (CTBT) in 1999.”

    Others are dismissed by inaction, including “such subjects as labor, economic and cultural rights, endangered species, pollution, armed conflict, peacekeeping, nuclear weapons, the law of the sea, and discrimination against women.”

    Rejection of international obligations “has grown so entrenched,” Kaye writes, “that foreign governments no longer expect Washington’s ratification or its full participation in the institutions treaties create. The world is moving on; laws get made elsewhere, with limited (if any) American involvement.”

    While not new, the practice has indeed become more entrenched in recent years, along with quiet acceptance at home of the doctrine that the U.S. has every right to act as a rogue state.”

  • Yesterday, I was told by my psychologist that Medicare would no longer allow coding for an extended session of pychotherapy of 75-80 minutes. That prompted me to do a lot of reading last night about CPT codes and the changes which were passed into law last November and took effect Jan.1, 3013. Since I’m not a provider I didn’t really have much knowledge of how codes are used in billing. Well, I learn a lot about it last night.

    But, I do believe that in my reading, it was stated that starting in the fall of 2013 Medicare would be requiring providers to use ICD codes instead of DSM codes for diagnostic purposes. What I read said that most insurance companies would probably follow suit. I don’t really know the politics of all of that within the industry but it seems as though the use of the ICD will soon be standard practice by m h professionals.

    This hasn’t been an area of expertise for me so if anyone has different information, correct me if I’m wrong.

  • This is quite a good topic to think about Ken. I was faced with considering these questions about three years ago when I was advocating for a young African American man with autism who was racially profiled and sentenced to 10 years as a felon as the unfortunate consequence of not saying his name and then resisting the assault on him by a police officer for merely walking away. I also thought about it a lot in relation to the Virginia Tech shootings and now, in relation to shocking disabled children at the Judge Rotenberg Center.

    I think that what is happening as the result of Whitaker’s recent book isn’t getting as much coverage as we would like because it is complex and people and reporters these days don’t like “complex” for the many reasons you mentioned as well as others. Much of the complexity has to do with understanding human behavior and the science we are just beginning to have related to the human brain.

    However, I would say that the lawsuit which you have mentioned is really not about Whitaker or medication and “the least restictive” standard is not quite accurate. The lawsuit, in simplistic terms, is about Olmstead, the law of the land, even from a conservative Supreme Court. Its about integration rather than the medical model or the reliance on medication to treat “mental disorders”. Olmstead was pre-Whitaker and should be adherred to whether or not one believes in the medical model or not.

    Olmstead is about being served in the community in the same way others are served and live, play and work. Its about equality of opportunity and and basic fairness and ending discrimination. Its about access to community living which we all should be able to enjoy as a basic human right.

    Olmstead was our Brown v. Board of Education which was supposed to be implemented with “all deliberate speed”. Well, we all know that didn’t happen. Olmstead was about implementation at a reasonable pace which in many states is happening at less than a snail’s pace.

    If a reporter isn’t talking about Olmstead and integration, they’ve missed the boat. And if we aren’t doing the same, its no wonder that the media isn’t getting it right.

    As far as general coverage of the issues raised by Whitaker and many survivor’s and some consumers prior to Whitaker, I think we need to look at what ACT UP did in relation to HIV/AIDS.

  • Corinna, I think you have captured the experience of many people who have used or who are trying to avoid using the current system dominated by the mental health industry. However, there are many people who have different experiences. What I’m committed to is self-determination which, to me, means carefully listening to each person and being present with them as they discover for themselves how they want to lead their lives. I try, as much as possible, not to assume that my experience is everyone else’s experience and I try not to impose what might work for me on other people. I also try, within my own limitations, to present information to people on the risks and benefits of all mental health and alternative treatments. In order for people to find their own way, I believe in a vigorous process to protect the human rights of everyone which doesn’t force the beliefs of the dominant culture on others and which doesn’t force or coerce people into so-called “solutions” which might not work for them.

    I strongly believe in informed consent which means that I try to advise people about the mental health industry but would also try to advise them about the consequences of what you are suggesting, Corinna. While there are many possible benefits to your proposals, there are also, many risks which I and others have found. Basically, the exit ramp which you talk about is a road to nowhere in terms of any system or network or movement which has the capacity to help individual people. Yes, there are some spots throughout the country where one can get alternative support but those places are few and far between.

    When people try to come off their meds or try to avoid taking them, there is just nowhere to go except maybe for Daniel Hazen’s program and a few others on the West Coast. When Dr. Breggin lived in the DC area, I could not see him because he was too expensive. I have searched high and low for an alternative doc who takes Medicare with no luck. I have also searched high and low for a therapist who takes Medicare or my secondary insurance who incorporate mindfulness Buddhist practices into therapy with no luck. There are no people who I know of who have learned and practiced intentional peer support in the Northern Virginia area or in Sarasota, FL. All of the people who have been trained in peer support in Northern Virginia have been trained and work within the traditional mental health system. Almost all peer specialists who I know of are not very active in pursuing the rights of their peers within the m h system because they are so low on the totem pole in the system and have so little systemic power that they are afraid to rock the boat.

    As far as using a “business model” to provide viable and effective alternatives, I’m not too excited. There is nothing magical about business. In fact, many would say that it is the capitalist business model which is destroying our country and which certainly was responsible for the last economic crash and deep recession. I do support alternative models, but one must realize that many people in the mental health industry are not corporations seeking profits for shareholders. The people who have been oppressing us for years where working under a professional model which has no shareholders and in which the professionals are supposed to have a fiduciary responsibility to their “patients” or “clients”. What we have gotten from them is a God complex in which the docs act as if they are infallable and have every right to hold all of the power and control the whole system.

    I don’t know where this leaves us. I support many of your ideas but right now I think there needs to be some sort of collective effort for people to come together and present and practice new models which take into account the different experiences which people have. I think the suicide rate in the U.S. tells us both people using the traditional system and those who don’t are in deep despair.