In the last couple of weeks, I’ve read two articles in which the National Alliance on Mental Illness (NAMI) is described as being the “largest organization representing people living with serious mental illness.” (Okay, so one of the articles actually said, “largest trade group representing Americans with mental illness,” but same difference, really.)
Putting aside (for the moment) my issues with the use of blanket ‘mental illness’ terminology; since exactly when did they become a group that represents people who have been so labeled in any genuine sort of way? (Please don’t come to NAMI’s defense on this point with mention of ‘In Our Own Voice.’ Please.)
NAMI National’s very own website acknowledges that they found their beginnings as a “small group of families gathered around a kitchen table in 1979.” Families. Not people who were themselves struggling or who had been psychiatrically labeled. Instead, it was their Mothers, brothers, fathers, spouses, daughters, sons and so on.
Surely, the pain, worry, fear, and desperation of so many parents, siblings, partners and children counts for something, but ‘representatives’ of my voice they do not make. To me, that is akin to white people acting as primary representatives for those of color, or cisgendered individuals having the loudest voice on what transgender people need and want. That they should take such liberty or be afforded that title by others without question certainly is representative of at least two things: Public deception (or, perhaps, mass delusion) and a deep-seated, long-standing system of oppression.
Meanwhile, Mental Health America (MHA) did indeed (more or less) grow out of the work of one particular person who had his own personal experience with psychiatric diagnosis and hospitalization: Clifford Beers. One has to wonder, however, what Beers would make of their new ‘President and CEO,’ Paul Gionfriddo.
While it’s true that MHA was already sitting deep in the pockets of the pharmaceutical industry right alongside NAMI (see my blog on that topic: Dear NAMI, Apologies. I’ve been unfair.) and their language is typically just about as offensive, they had done fairly well on taking a stand against such oppressive measures as Involuntary Outpatient Commitment (IOC). Then, in walks Gionfriddo and his ‘Four Stages of Mental Illness’ nonsense, and next thing we know, he’s testifying every chance he can get in favor of the Murphy Bills (HR 2646 and S. 1945), some of the most regressive, force-laden legislation to hit the bureaucratic waves in decades.
Clearly, Gionfriddo is most often operating out of his own pain and loss of his son, Tim, who no longer has consistent contact with him and who reportedly lives on the streets of California. (In fact, he’s written a book called ‘Losing Tim,’ that he can be found promoting across the country and various conferences and other assorted venues.) But, how much can one’s personal suffering be allowed to cloud the public airwaves?
In fact, Gionfriddo’s perceptions prove highly distorted as evidenced by the following excerpt from a recent article on the intended changes laid out in the aforementioned Murphy Bills to the federal privacy law known as the Health Insurance Portability and Accountability Act (HIPAA):
Paul Gionfriddo, president and chief executive officer of Mental Health America, told Bloomberg BNA he understands people have concerns over the potential HIPAA changes. But “those concerns are rooted in the reality of 1970” when it was permissible to discriminate against people with mental illnesses or substance abuse disorders. (Weixel Nathaniel. ‘Mental Health, Privacy Advocates at Odds Over Legislation.’ Bloomberg BNA. August 31, 2015.)
Does Gionfriddo really believe that discrimination against people with psychiatric diagnoses is a thing of the past? I wasn’t even born in 1970, and yet I’ve witnessed, heard about, or been personally subjected to enough examples of discrimination to fill several good-sized libraries. Here are just a few I’ve witnessed in the last year alone:
- The media regularly demonizes or caricaturizes individuals with psychiatric diagnoses, and excludes or minimizes their voice in any serious discussion about policy, the mental health system, or understanding their experiences of emotional or mental distress. For example, while I’m grateful to two reporters (Kimberly Leonard of US News and Nathaniel Weixel of Bloomberg News) for including quotes from me and other dissenters in recent articles about the Murphy Bills, in most instances, the general public isn’t hearing about any dissent at all (let alone any opinions directly from people who’ve been ‘treated’ in the systems that would be most impacted). This is in spite of the fact opposition is widespread among individuals with psychiatric histories, their allies, and even many mental health providers.
- Try this experiment: Look at your local hospital’s website for their general visiting hours. Then, compare them to the visiting policies for that same hospital’s psychiatric unit.
For instance, here’s what I find at one of the local hospitals in Western Massachusetts:
“There are no set visiting hours, but visitors are asked to respect patients’ needs for a restful atmosphere. In some cases, in the Critical Care Unit or Childbirth Center, or at the patient’s request, visitation may be limited.”
I then called that same hospital and asked the main operator about their visitor policy. She confirmed that they have no set visiting hours, and that visitors are encouraged as it often supports people to heal and feel more comfortable. I then said, “What about the psychiatric unit, then? I thought there were very strict visiting hours there,” to which she replied flatly, “Well, that’s the psychiatric unit.” Note: The hospital doesn’t even seem to acknowledge the existence of the psychiatric unit in its general visitation policy on the website.
- Check out this (current) statement on one particular meditation center’s website.
Persons With Serious Mental Disorders
People with serious mental disorders have occasionally come to Vipassana courses with the unrealistic expectation that the technique will cure or alleviate their mental problems. Unstable interpersonal relationships and a history of various treatments can be additional factors which make it difficult for such people to benefit from, or even complete, a ten-day course. Our capacity as a nonprofessional volunteer organization makes it impossible for us to properly care for people with these backgrounds. Although Vipassana meditation is beneficial for most people, it is not a substitute for medical or psychiatric treatment and we do not recommend it for people with serious psychiatric disorders.
Do I need to say more?
Clearly, these abuses are mild as compared to some of the many much more violent and horrific examples taking place each and every day. However, in some ways, it’s their very mildness that serves to demonstrate just how integrated and accepted the bias against people with psychiatric diagnoses is at every layer of our culture.
Thus, Gionfriddo’s denial of the existence of present-day discrimination is perplexing, even if I give him the benefit of the doubt and totally ignore the fact that the HIPAA privacy protections were enacted well after the ‘Americans with Disabilities Act’ that prohibits discrimination, thus rendering even his starting point for that statement to be nonsensical.
So, I’m left wondering: Are NAMI and MHA (who are increasingly looking an awful lot like NAMI, anyway) suffering from anosognosia? (For anyone unfamiliar with that term, it is essentially defined by the Treatment Advocacy Center and its followers as a part of one’s supposed mental ‘brain disease’ that leads them to lack insight and awareness that they are ‘sick.’) How have they come to these distorted perceptions and altered realities?
In truth, I don’t really believe these organizations suffer from ‘anosognosia’ primarily because I think the term itself is absurd (except, perhaps, when applied as it was originally intended to stroke victims and others who’ve suffered real, tangible brain damage), but they sure do seem to be lacking in some degree of insight. They are blinded by many factors that include (but are not limited to) ignorance, pharmaceutical influence and greed, fear and desperation based on personal family crisis, and public pressure to appear to be doing something. Anything. Even if it makes no sense at all.
I wish I could say that pure reason is likely to be what rights this topsy-turvy mess, but we’ve already seen ample evidence that that’s not going to happen. I’m not suggesting that we join these two organizations down a path of absurdity, but somehow, we’re going to have to collect more voices, get even louder, and be even more persistent than we’ve already been. Somehow, we’re going to have fight harder and infiltrate more.
Until our voices are seen as having equal value and are given equal space, those that do not understand and lack insight into our experiences (whether they possess good intent or not) will continue to be the ones to define our past, present and future in the public eye.
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For more on the Murphy Bills:
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.