It is ironic that this week, the Mental Health Commission of Canada's (MHCC) international anti-stigma conference contains a session, offered by Canadians, with the most blatantly stigmatizing collection of ideas about families coping with mental illnesses that I have ever seen. The picture it weaves of these families has the power to shroud them in the worst shaming they have experienced since the Freudian heyday of the schizophrenogenic mother.
The ongoing political struggles that have plagued the work of the MHCC are evident in various sessions. One of the basic dividing lines is between people who believe that psychotic illnesses are brain disorders, and those who don't. The former, supported by contemporary neuroscience, think those who struggle with these disorders usually need medications as well as a variety of psychosocial rehabilitation strategies to make the best possible recovery. This group also believes that sometimes when people are psychotic and are unable to understand how ill they are, they need to be treated involuntarily. My daughter and her friends, all of whom live with psychotic disorders, have good relationships with their families and count on them to ensure treatment in the event of future psychotic relapses.
The other position about mental illness, held by the "psychiatric-survivor movement," is well represented at this conference. This group contends that the term "mental illness" itself is stigmatizing and inappropriately applied to various states of being that should be considered part of normal human experience. Sometimes people have extreme mental distress, or spiritual emergencies or existential crises (all terms used by groups attending this conference) and these should not be medicalized. Medications should be avoided and no one should ever be treated against their will. Many of us who are family caregivers feel that the "psychiatric survivor movement" doesn't represent the beliefs of our family members.
The panel session that is focusing on the family certainly has a promising title: "The Experiential Knowledge and Wisdom of Families." However, the description of the session reveals perspectives that are rare among actual family caregivers of people with psychotic illnesses.
This is not a session exploring the "wisdom" of the families coping with severe mental illnesses. The session describes how families need help in finally becoming recovery-oriented; they need to be led out of what is termed the "stigma inherent in the family movement" and its "disempowerment" of people with mental illnesses.
The major resource listed for this session is Debbie Peterson's article "Family Attitudes and Mental Illness Literature Review." This selection of studies is used to demonstrate how destructive families are to people with mental illnesses.
It may be troubling to see a large panel at a conference fighting stigma put forth such negative stereotypes of family caregivers. However, it's even more disturbing that some people on the panel are entrusted to speak on behalf of family caregivers and offer assistance to them.
The panel has been organized by MHCC Board member and controversial CEO
of the Schizophrenia Society of Canada, Dr. Chris Summerville -- the title reflects his training to become an evangelical minister. Summerville astounded many family members soon after he volunteered to be an interim CEO of this loosely organized federation of provincial schizophrenia societies. In an interview in Canadian Christianity, he spoke of families being the obstacle to people getting treatment because they don't want to let out the "family secret."
The anti-family attitudes that frequently appear in the "psychiatric survivor movement" are well explored in the writings of fellow panelist and anti-psychiatry activist Karyn Baker. Baker lays out her position that families undermine recovery in her article "Families: A Help or Hindrance in Recovery" published in Stastny and Lehmann's anthology, Alternatives Beyond Psychiatry. In this article, she presents her version of the history of the family movement. This history doesn't mention, for example, families' successes in initiating a wide variety of new services including housing, educational, and vocational opportunities for people with mental illnesses. Instead, Baker focuses on the kind of education her group, Family Outreach and Response, has created for misguided families. The families should understand "madness as part of the human experience," acknowledge their role in "wounding their relative" and stop encouraging the use of medications.
Fortunately, this three day conference does include a session that offers a less stigmatizing perspective on family caregivers. In "First Episode Psychosis: The Experience of Parent Caregivers," Alberta nursing instructors Jane Elizabeth Hamilton Wilson and Sherrill Conroy, discuss their study which involved carefully listening to parents. These researchers discovered that a major experience for parents during these turbulent times is their enduring love for their sons and daughters. Perhaps Debbie Peterson will consider including this research in her next literature review about family involvement.
For families across the country looking through the program at the many diverse offerings at this week's conference, there is hope. We are told how important protest has been to bringing change to stigmatizing and injurious attitudes.
I am protesting.
Lloyd I. Sederer, MD: OC 87: The Obsessive Compulsive, Major Depression, Bipolar, Asperger's Movie
My son believed conspiring neighbours has entered our home, abducted his real mother and I was an imposter with a spying device implanted in my eye. He cornered me in our kitchen and threw a brick-size, metal file box at my head. I was in danger. There comes a time when relying on kindly talk is legal negligence; the person must be removed from the family home.
My son did not leave voluntarily because he thought nothing was wrong with himself. Watching police take him to hospital involuntarily was heartbreaking; but it would've been worse to leave him to harm me, after which he would have gone to jail.
I did not take the easy way, nor fail him. I visited him in hospital every day. We played cards and ping-pong. I spoke with his doctor, ensuring he was treated kindly.
After 9 weeks on medications, he returned home. After 11 weeks, his insight returned. He phoned friends, rebuilding relationships and talked to a former employer, getting his job back. Eventually, he graduated university. He is now employed in a professional field he loves. If anyone has recovered, he has!
We talk. He doesn't resent me for having him hospitalized and treated involuntarily. He understands that he needed help when he couldn't help himself. On my birthday, he gave me a beautiful card that read: "With gratitude for everything you have done for me."
I am very happy for your son's good outcome. I have also signed papers to get my son committed and visited him every day when he was in hospital. We have a good relationship and he does not condemn me for putting him in hospital. That being said, mainstream psychiatry as it is practiced in institutional settings enabled me to have no insight into how to help him - it operates from the principle that only doctors know best. Mental hospitals in my opinion, are a testament to failing the
individual. If psychiatry did its job properly there would be no need for repeat hospitalizations. Anything I learned about how to avoid repeat hospitalizations, I learned on my own through trial and error. I failed to keep him out of the hospital, but through perseverance on everyone's part, hopefully we will not go that route in future.
Your hospital experience was different from mine. My son was in a community hospital with a mental health unit, in Ontario, which had a team approach, so we were assigned a team of doctor and social worker to help with needs beyond the illness itself. The hospital also had a family support coordinator who was absolutely wonderful in helping me navigate the mental health system. She was a knowledgable, caring person I could talk to.
My son experienced relapses and hospital readmissions at first. But then Ontario brought in Assertive Community Treatment (ACT) teams comprised of a psychiatrist, nurse, social worker, peer support worker - and they helped my son stay well at home. That was in 2000, and my son hasn't returned to hospital since. He did relapse once after that, but the ACT team helped him stabilize at home instead of going to hospital.
I agree that some doctors do assume they know best. The team approach helps get away from that. I've noticed younger doctors seem more comfortable with the team approach. Also, I developed the ability to become suprisingly assertive with doctors when I didn't agree with them. This isn't an easy journey and no one is perfect, but as parents we love our children and fight for them the best we can.
Rossa, I sincerely wish you and your son well.
I hyperlinked to it because it contained an interview with Dr. Chris Summerville which bothered many family caregivers.
First, even in poor countries like Ethiopia, the large urban centres have hospitals, doctors and medications, and people use them the same as here.
In some remote, rural areas people may not have access to hospitals or medications, but the traditional care is not necessarily superior. For example, when I travelled to Zaire as a reporter a few years ago, I saw a woman with psychosis or dementia tied by her leg to a large log in the middle of a village. This was not done from unkindness: she had previously wandered into the jungle, got lost and nearly died before they found her. She was chained by just one leg to give her as much freedom of movement as possible while still keeping her safe, and in the middle of the village so that other villagers could keep an eye on her as they went about their daily tasks. They were doing the best they could and spoke kindly to her, but I would not call this superior mental health care.
These WHO studies have not been refuted. Even though proponents of court-ordered drugging would like to claim otherwise.
Playing around with the brains chemistry is dangerous, there are over 60 chemicals in the brain
Targeting a couple of them, is just Russian roulette.
Every is an individual & each illness needs to be judged on it's own merit. Unfortunately a lot of Doctors just jump in.
I often focus on the great strides being made in cognitive enhancement therapy to help people with schizophrenia overcome the cognitive problems the illness can create. In fact, I have tried repeatedly, but unsuccessfully, to persuade the MHCC’s Knowledge Exchange Centre to include cognitive remediation information on its site so that Canadians can share information about this topic.
NIMH research, as I often point out, details how cognitive challenges related to schizophrenia make people's lives much more difficult. It’s why they have sponsored so much promising research in this area.
It doesn't help people to have these cognitive challenges ignored out of fear of stigma. Recent emphasis on neuroplasticity is very exciting and offers great hope for people with a variety of brain difficulties. It’s unfortunate that people who want to deny that schizophrenia is a brain disorder block efforts to develop much needed programs.
I would think that people who oppose the use of medication would be very happy to learn about the great progress being made in rehabilitation techniques like these.
"Summerville said one of his goals is to “bring the presence of Christ” into the different perspectives that will be present in the Commission.There has been a “prejudice against religion” on the part of some mental health professionals, he said, and “historically clinicians have been reluctant to discuss religion with their clients.” However, that is changing, partly because clients themselves are saying that finding purpose and meaning are an important part of their healing process. “Young people especially want to be defined more than just chemically,” said Summerville.
A variety of viewpoints should be represented; I’m calling attention to the missing perspectives of Canadians who are genuine family caregivers of people with psychotic disorders. The one panel during the three day conference which was supposed to be representing these voices described their session in ways which shames these families and labels them as being anti-recovery. The writing of panelist Karyn Baker, which I describe and to which I hyperlink, blames, patronizes and insults families. These ideas also pose real dangers to people who actually have psychotic brain disorders. It also stigmatizes them by denying the reality of these disorders.
If this panel truly represented the needs of family caregivers they would have been exploring the incredible stigma they face which makes their ongoing assistance to their own family member and to the larger causes they work on more difficult.
If they wanted to celebrate the ‘wisdom ‘ of families, which has been essential in the recovery of many people with psychotic disorders, they would have highlighted these stories.
Instead, the panel supported ideas which greatly heighten the stigma families confront.
Here is a link to numerous stories from "psychiatric survivors" on David Oaks' website. Many of them have lived through the very horrors you mention, yet are fully recovered. I find their stories inspiring, but that's just me. http://www.mindfreedom.org/personal-stories
For many people with psychosis, medications are the turning point to recovering a meaningful and fulfilling life. My son is one of these. But he takes the meds as prescribed in full consultation with his doctor.
Mr. Summerville -- one of the panelists of the session discussed in Ms. Inman's article -- himself gives witness to the amazing transformation of Vincent Li, the man who beheaded a fellow passenger on a greyhound bus while in a full-blown psychotic state. Mr. Summerville, who has been visiting Mr. Li in the forensic hospital where he is committed, reports that Mr. Li has recovered so well on anti-psychotic medications that he is now stabilized and his insight is restored to the point where he can safely be granted escorted excursions outside the hospital.
When consumers want to represent the needs of other consumers, I think it's important they understand the disorders that people are dealing with and the evidence based practices that can help.
The US National Institute of Mental Health (NIMH) says that problems with cognition are the biggest factor that lead to ongoing disability for people with schizophrenia and have focused research efforts on helping with these problems in recent years. There have been good results; ex.: Dr. Sophia Vinogradov's research:
http://www.cell.com/neuron/abstract/S0896-6273(12)00049-9
Much more valuable information about cognitive difficulties and many useful research studies can be found on the website of NIMH, ex:
Cognitive symptoms
Cognitive symptoms are subtle. Like negative symptoms, cognitive symptoms may be difficult to recognize as part of the disorder. Often, they are detected only when other tests are performed. Cognitive symptoms include the following:
• Poor "executive functioning" (the ability to understand information and use it to make decisions)
• Trouble focusing or paying attention
• Problems with "working memory" (the ability to use information immediately after learning it).
Cognitive symptoms often make it hard to lead a normal life and earn a living. They can cause great emotional distress.
http://www.nimh.nih.gov/health/publications/schizophrenia/what-are-the-symptoms-of-schizophrenia.shtml
Susan
I mention, in fact focus a lot of attention on, the great strides being made in cognitive enhancement therapy. NIMH research, as I often point out, details how cognitive challenges related to schizophrenia make people's lives much more difficult. It doesn't help people like my daughter to ignore these problems and pretend they don't exist. She has benefitted from and appreciated being able to be a part of research projects on these techniques that are occurring in Vancouver. She feels no shame, nor should she or others, who have developed various brain glitches. It's helpful to have these cognitive challenges acknowledged and to learn strategies to overcome the problems that occur. The age of neuroplasticity is very exciting and offers great hope for people with a variety of brain difficulties. But it seems like families advocating for the development of these useful programs won’t be getting any support from people who have different perspectives on the nature of mental illnesses.
I would think that people who oppose the use of medication would be very happy to learn about the great progress being made in rehabilitation techniques like these.
Brain damage, neurological impairment, metabolic, hormonal and cardiovascular dysfunction are a pretty steep price for a person to pay to be 'effectively treated' for what is being claimed is a 'brain disease.' I assure you these things are not enabling my son 'get well.' I am skeptical only because I wonder, if the drugs are making your children well, why can't we hear from them?
One of the things I totally do not understand, is can a drug-induced death be called, 'natural death'?
First, re the need for cognitive remediation; info available at:
http://www.nimh.nih.gov/health/publications/schizophrenia/what-are-the-symptoms-of-schizophrenia.shtml
Often cognitive difficulties are part of the prodromal stage of schizophrenia.
You may not have seen, Becky, as I often have, people emerge from the chaos of psychosis into mental clarity because of the use of anti-psychotic medication. Big Pharma pushes meds that people don’t need, but the research on most people getting rid of the positive symptoms (hallucinations, delusions, etc.) of psychosis through meds is extensive.
The meds don't address the other cognitive difficulties caused by the illnesses.These difficulties are present in people who haven’t taken meds.
Yes, meds have side effects, but psychosis is hell.
Re who should advocate for people when they are unable to advocate for themselves. I'm sorry that some psychiatric survivor groups, with people who have very different disorders, believe that they are entitled to decide what people with psychotic disorders need. I notice that these movements are very anti-family, although they often want to 'fix' them; currently Whitaker's psychoanalytically oriented communities are popular. It's odd that any parents support these groups which see the illnesses as having arisen from flawed family relationships.
My daughter enthusiastically supports the advocacy work I do.
There are lots of stories available from people helped by meds.
http://fullcomment.nationalpost.com/2012/06/18/erin-l-hawkes-forced-medication-saved-my-life/#more-82034
Susan "protests" the notion that the standard approach is disempowering family members, yet when people are told they have a "brain disease" that requires them to take tranquilizing medication for life, and are led to believe that they have no other possibilities in life, they are being radically disempowered. This is a great way to market drugs, but a lousy way to treat human beings who deserve to the truth, which includes the fact that many people do manage to get off the drugs and seem to get better after they do so.
They do have psychiatric drugs in India!! And people in India do use them and recover a meaningful and fulfilling life!!
If the general public understood what their money was going to these days when it comes to behavioral health, I don't think they'd like it. Even though many of us come from lousy childhoods and manage to make it through life without ever thinking we're Jesus Christ or the FBI has planted listening devices in our head, we're supposed to believe that other folks just can't cope with the mistreatment and become so "traumatized" and "emotionally distressed" that they need to live on disability, Medicaid and Medicare? And these same people get public money to open organizations that tell other people that they too have no illness? Seriously?!? If you don't have an illness, get a job, support yourself, and leave our really sick kids alone!
Excuse me? Dr. Summerville has earned a doctorate from the Dallas Theological Seminary which is accredited by the Association of Theological Schools, the same commission that accredits places like the Harvard University Divinity School, Princeton Theological Seminary, and Yale University Divinity School.
Ms. Inman also tries to tell us that Dr. Summerville is "evangelical." Maybe she does this because of the common misperception that evangelical Christians are anti-science? Yet one of the top scientific positions in the U.S. is held by an evangelical Christian, Dr. Francis Collins, who heads the National Institutes of Health.
When people resort to discrediting others by distorting truth and sneaky smear tactics, they do nothing but undermine their own credibility.
Dr Summerville has a D. Min degree from the Dallas Theological Seminary, I gather. The admission requirements from their website include evidence that they (1) are born again; (2) are of proven Christian character; (3) are endowed with appropriate spiritual gifts; and (4) adhere to the following doctrines: the authority and inerrancy of Scripture, the Trinity, the full deity and humanity of Christ, the spiritual lostness of the human race, the substitutionary atonement and bodily resurrection of Christ, salvation by faith alone in Christ alone, and the physical return of Christ.” See http://www.dts.edu/dmin/admissionsrequirements/
This will make him an excellent religious leader in that church but, unless he can leave those beliefs at the committee door, they do not make him representative of the vast majority of Canadians in my opinion. He is entitled
It is important when reading about these matters that we families know the basis for credibility in any speaker.
I don't write about all kinds of mental health problems, just about psychotic disorders. The erasure of diagnostic categories promoted by the psychiatric survivor movement leads to great confusion. As this group has become overly empowered in the US to deliver mental health services, it also leads to people with the most severe mental illnesses receiving the fewest services.
Please know that I know a large number of people have been damaged by inadequate parenting. And given that 1% of the population have schizophrenia and 1% have bipolar disorder, some of these people are clearly going to have had those experiences. However, I'm hoping readers can see, in my link to Karyn Baker's article and in many comments to several of my huffpo articles, the kind of pervasive parent blaming that is inherent in the psychiatric survivor movement.
This unjustified parent blaming hasn't just hurt our sons and daughters. It has severely limited families in Canada in advocating for the kinds of services that we see are needed. I mentioned in an earlier article
http://www.huffingtonpost.ca/susan-inman/how-peer-workers-can-hurt_b_1444359.html
how disappointing it is that families advocating for education programs specifically developed for people with schizophrenia have never found any allies in the psychiatric survivor movement.
You write: "how disappointing it is that families advocating for education programs specifically developed for people with schizophrenia have never found any allies in the psychiatric survivor movement."
There are probably several reasons for this. Most psychiatric survivors have had to go it alone - and would prefer to do so given how they have been treated by the mental health system. The mental health system has had plenty of time to get it right, and it continues to receive low grades. Second - psychiatric survivors are no fan of NAMI, an organization that advocates for education and often forced treatment, because this is a pharma funded organization which is embraced by family members who think their relative is brain damaged. Third, psychiatric survivors don't consider schizophrenia a disease. Why would psychiatric survivors want to advocate for programs that advocate the stigmatizing disease view of a suffering individual?
Best regards,
Rossa
Drugs used to treat psychosis do have troubling side effects but psychosis renders people unable to meet even the most basic of their needs.
I did a practicum at a homeless shelter in a large urban center. Many of the clients had psychotic illnesses with hair uncombed for YEARS and fingernails that were so long they had started to curl beyond the tips of their fingers.
They were constantly being victimized by other inner city residents and at risk for being hurt or killed by police when acting particularly crazy.
As sad as their lives seemed, the lives of their families were very difficult too. I met their parents and siblings who lived in a state of overwhelming fear about the fate of their loved one.
People with psychotic illnesses sometimes do feel resentment against their families because it is parents and siblings who nag the system into commital and hospitalization of the ill person.
The medical profession also fuel stigma through it's theory, that's still to evolve. Stuck in the Victorian era.