by Jeanene Harlick | September 12, 2014 6:40 am
Over the past half-century, since the beginning of the Civil Rights movement, minority groups such as African Americans, women, the LGBTQ community, and the physically disabled have made enormous strides in the elimination of prejudice and discrimination. But people with psychiatric disabilities have for the most part failed to reap comparable gains, and remain one of the most stigmatized and disadvantaged minorities in this nation. Often not even included in minority rights discussions, the mentally ill are still associated with a wide array of negative stereotypes and experience significant prejudice from employers, landlords, government institutions, medical professionals and sometimes even counseling professionals, according to researchers like Dr. Patrick Corrigan, Petra Kleinlein, Palmer Reg Orovwuje, Gerald O’Brian and other colleagues who have done extensive research on this issue. The mentally ill experience disproportionate levels of unemployment, lowered standards of living, economic hardship, social isolation and social restrictions. Their plight caused Orovwuje and psychologist A.J.W. Taylor to write, in a journal issue devoted to examining social justice and mental health:
“People suffering from mental disability and mental illness are among the most disadvantaged groups in society. They suffer severe personal distress, and they are stigmatized, discriminated against, marginalized, and often left vulnerable. They are denied civil, political, and social rights, and are treated less than fairly in legal procedures, clinical practice, and institutional management… The yearnings of people with mental illness to be recognized as full citizens able to enjoy the same rights as other citizens has yet to be satisfied.”
One in four Americans ages 18 and older experience a diagnosable mental disorder in any given year, according to the National Institute of Mental Health. However the primary burden of mental illness falls on those who suffer from severe and chronic disorders – about 1 in 17 adult Americans, or 6 percent of the population. Mental disorders are in fact the leading cause of disability in the United States and Canada; and their rates are higher among the poor, homeless, and women, according to NIMH and other researchers.
Who is included among the mentally ill? The definition is in flux, and who is or isn’t a member of this population is sometimes a complicated thing to assess. However the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association, and the World Health Organization’s International Classification of Diseases define mental illness as a clinically significant behavioral pattern that leads to distress or potential loss of freedom, and which impairs life function. (The DSM – which plays a leading role in the social construction of mental illness – sorts out the various mental disorders among five axes which include more than a dozen categories of mental illness.)
This article will primarily be concerned with the 6 percent of Americans who live with chronic, serious mental illness. It will seek to provide a comprehensive overview of the history of the mentally ill in the United States, the oppression they face, various psycho-social models underpinning how both society and mental health professionals view the population, and emerging models that offer hope for more effectively equalizing opportunity.
Wrote Jose Barchillon in the preface to Foucault’s Madness and Civilization:
“The roots and symptoms of folly are being looked for today in psychology, medicine, and sociology, but they were still and are as present and important in art, religion, ethics, and epistemology. Madness is really a manifestation of the ‘soul.’”
Did you know eating disorder treatment is a $2.7 billion industry, according to the market research firm IBIS? But try to find an outcome study on whether the billions being poured into treatment – particularly residential treatment – for EDs is actually working, in the long run, and what will you find? Virtually nothing, particularly when it comes to adults. Treatment centers simply are not required to report outcomes, nor are they required to track them in any respectable way (as far as accepted quantitative and qualitative research standards go in academia). Many centers will boast to potential clients of success rates in the 90-something percentage rate – but these are based on self-report surveys, which as anybody who’s ever conducted research knows, are completely unreliable. Only the former clients who are doing well generally return the surveys; thus the “outcomes” found are incredibly biased. Meanwhile, both private and public health plans, as well as a multitude of client families’ whose plans don’t cover residential treatment, shell out millions of dollars of years to treatment centers whose true, long-term outcomes are a mystery to all except the providers. I’ve been a client at many of these treatment centers. What is one of the first things I find when I enter one? That I’m in a house full of clients who’ve already been to a slew of other treatment centers as well. So clearly you’ve got to wonder – are these places working? Some evidence shows that residential or inpatient treatment may work – for the long-term – for adolescents or young adults when the illness is caught early. But there is nothing out there about whether it works for people like me, a 40-year-old woman who’s battled anorexia for more than half my life. I entered my first treatment center 10 years ago, when I was a high-functioning, successful journalist attempting to avoid letting what was becoming an increasingly impairing illness destroy my life – if I didn’t act soon enough. The irony is, things only got worse from there. I became much more of an “anorexic” after my first treatment center than I was before. Things came to a head in 2010 when, after 6 years of cycling in and out of treatment centers, I reached a weight so low I became at risk of dying of anorexia for the first time in my life. This is despite the fact I wasn’t even consciously trying to achieve a low weight, much less one so dangerously low – that was the last thing I wanted. I had just resumed graduate school in the Bay area and finally felt like maybe I still had a chance at establishing a new career and becoming a functioning member of society again.
Many treatment providers, when asked about why the long-term, recovery rates for people like me are so low will say the problem is US, that anorectics in particularly are notoriously hard to treat or track, that we are “treatment-resistant,” that we refuse to truly “surrender,” blah blah blah. They apparently refuse to take any responsibility for considering that perhaps the problem is the fact they’re simply “treating” us wrong. For one, most of these centers’ use old models originally developed for adolescents. A rigid, punishment- and rule-based system (among other things) based on very rapid weight restoration, rigid schedules, and nearly no personal freedom – simply does not work for adults who are already highly, internally motivated to recover. Nor do, I’ve found, most professionals at RTCs address the very different issues that adult eating disorder clients wrestle with – for example, my eating disorder has very little to do with appearance or a desire to be “thinner.” I hate being too thin. The underlying issues fueling my eating issues and behaviors are much more complex, have evolved continually over the years, and are so convoluted at this point that it would be hard for even me to concisely summarize them.
Another irony is that I was, as stated in the “About ADW” page, the lead plaintiff in a lawsuit now requiring private health plans in California cover residential treatment for eating disorders. And now I wonder – apart from the fact that I am VERY happy my parents got their money back – whether that was such a good idea – requiring insurance plans pay for treatment that has no evidence base, for adults? Why should these insurers be required to spend millions of dollars on treatment centers – or private individuals be forced to go into horrifying debt – for treatment that, at least for adults, for all appearances does not seem to be working. Why aren’t treatment centers – particularly in an era of health care reform, with a premium being placed on more efficient use of health care dollars – being held accountable for their apparent ineffectiveness? It almost makes me wonder whether treatment centers actually want it this way – they fail to adapt to the needs of their adult clients because they want them to keep coming back – they need the money. On the other hand, I know this probably isn’t true. I’ve seen the true caring these treatment providers have for people who suffer from eating disorders. But I think they work in a very insular field where they are taught not to think outside the box.
Clearly, you can see where this story will be going – I will be attempting to do some hard-core research to find out the true (and possibly dirty) story of what the real outcomes are, why no government, consumer or health care entity is forcing residential treatment centers to be held accountable – and what kind of profits these places are reaping while women die because some treatment centers refuse to take a hard look at themselves… The good news is, a coalition was recently formed to address, in part, some of the issues I’m talking about here. News I was very glad to hear. And I am becoming more aware of just how tricky and complex it is to create and implement scientifically rigorous outcome studies for my particular client population. In short, many facets will be explored in this upcoming story, only some of which have been mentioned here.
I was born in an era when twins were fairly rare and my sister and I were gushed over in public, as well as
immediately lumped together into one entity. We were dressed alike, of course. As we grew up, we would constantly hear people tell us how much “fun” they thought it’d be to be a twin, asked how often we tried to fool people, and endlessly called us by the wrong names, among a multitude of other things. As an adult when my mental health issues became more exacerbated – and remain a constant struggle – not one of the professionals (and there are multitudes) I’ve been treated by have done their homework on the complexity of twin psychology. They have all treated me as they would any other client, never bothering to consider that I see myself and my relation to others in this world in an entirely different way, purely by dint of being born a twin. It only recently dawned on me that maybe this is one reason no therapist or treatment center has ever helped me in a way that has led to long-term recovery. Recently, I was lucky enough to discover a psychologist – and twin herself – Dr. Barbara Klein, who writes about what therapists need to understand when they’re working with somebody who happens to be a twin. This article will explore both my own journey as a twin – including how I continually try to grapple with “losing” her to her husband and children, with nobody to fill the void – as well as the research and complicated dynamics of twin psychology. Writes Dr. Jacqueline Martinez in the forward of Klein’s book: “An understanding of the realities of twinship is essential for success any time one is working with a twin… In the worst-case scenario, the therapist’s lack of awareness of how poignant these attachment and developmental issues are for twins leads to perpetuation of the very dynamic the twin-patient is attempting to heal from and move beyond.”
Bella DePaulo (Ph.D., Harvard; Project Scientist, UC Santa Barbara), an expert on single life, is the author of several books, including “Singled Out: How Singles Are Stereotyped, Stigmatized, and Ignored, and Still Live Happily Ever After”and “Singlism: What It Is, Why It Matters, and How to Stop It.”
As a 40-year-old single woman who has accepted that I will likely remain single for the rest of my life – and that my hopes of having children, due largely to the biological clock factor, are pretty much nil, I still struggle with the prejudice which occurs toward single adult women of my age range on a daily basis. We live in a society where being “normal” means being married, and if you’re not, you’re an “other.” I recently was lucky enough to discover two great writers who are actually trying to get our voice out there, as well as conducting research which documents the extent to which single people are stigmatized today. Most notably, Bella DePaulo, who holds a Harvard Ph.D and does research at UC Santa Barbara, is making huge strides in this area. She coined the term “Singlism” following a series of studies documenting how single people are demeaned and diminished, and viewed and treated more harshly than married people in the U.S. (for example, she found people view us as more self-centered, less well-adjusted, less mature, among many other things).
Dr. DePaulo notes in one of her columns – she writes regularly at PsychCentral – that there are many more single people in the US (more than 100 million) than people who are LGBT, yet “the same-sex community has achieved many more victories in their quest for justice than single people have… Where are the people willing to invest big sums of money and huge amounts of time in the cause of singles’ rights?” And in another column, she asks, “Why do so many prestigious publications, such as the New York Times, devote so much attention to marriage, and so little to single life?”
The other writer I discovered, Gabriela Denise Frank has written about how single and childless women are put into a “separate caste” and taught from our youngest years to fear being alone, that being alone = FAILURE.
There are a lot of other, subtle ways single people are discriminated against that go unnoticed — for example, try grocery shopping for a house-of-one. For certain products in particular, it is nearly impossible to find package sizes that include the amount of food only a house-of-one needs. And, as already noted on this Web site – my budget is very limited. Being forced at times to purchase products packaged for families – because that’s the only size they come in – is an expense I can not at all afford.
I could go on, of course. In short, this article will explore research people like Dr. DePaulo are doing and, like the twin story, integrate it with my own experience to help shed light on the difficulties (and society-induced shame) inherent in living single in America today.
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