What interested me the most about my blog last week entitled The Changing Face of NAMI is that many of the nearly 100 comments were about Assisted Outpatient Treatment, Dr. E. Fuller Torrey, the Treatment Advocacy Center and Robert Whitaker. Anytime there is a mention of requiring someone to take medication, battle lines are quickly drawn.
I wonder if we have lost sight of the war because we are so busy battling amongst ourselves.
The shootings at Newtown, Aurora, Tucson and Virginia Tech, have finally turned a spotlight on our broken mental health system. Now is the opportune time for us to join ranks and attack the larger issue of STIGMA.
While this window of opportunity is open, we need to hammer home three points.
1. Mental illnesses, such as bipolar disorder, depression and schizophrenia, are real. 2. They are not the fault of the individuals who get them. 3. Most people who do get them can recover if given meaningful community services.
Two years ago, I spoke at a convention of journalists from the Lesbian, Gay, Bisexual and Transgender community. I said that mental health advocates needed to learn from the LGBT community. Yesterday’s Washington Post published an editorial by immigration activist Frank Sharry that ecohed the same thought. Sharry wrote that gay activists have given underdogs a blueprint for how to successfully change public opinion.
We learned three crucial lessons from LGBT activists: We had to build a movement. We couldn’t be afraid to challenge our friends in power. And we had to give our cause a human face.
Let’s start with Sharry’s first point: building a movement.
I often say in my speeches that we can’t reform mental health care in this country unless we want to talk about much more than medications. We have to talk about housing, jobs, veterans, drug and alcohol treatment programs, transportation and hope. In short, we need to expand our definition of what constitutes mental heath services.
The same can be said about building a national movement to fight STIGMA. This has to become more than a cause fought by the National Alliance on Mental Illness, Mental Health America and BringChange2Mind. Fighting stigma must become a priority for the American Psychiatric Association, the American Medical Association, and dozens of organizations that deal with behavioral health care, homelessness, veterans, etc. We have to think beyond our own silos and form a coalition. Better mental health care begins with fighting stigma and that means pulling the National Sheriff’s Association, National Education Association, and even groups such as the AARP into an umbrella movement with one main goal: reducing STIGMA.
Let’s look at lesson two from LGBT.
LGBT advocates showed us that the way to build power is by leveraging your competitive advantage. If money and votes are the currency of politics, their strength was in the former. Snarkily referred to by donors and beneficiaries alike as the “GAY ATM,” LGBT contributors gave generously to political candidates and won themselves a seat at the table.
We need to buy our “seat at the table.” We need a national mental health political action committee. Donating funds for research is noble, but in my myopic view, research should be financed by the National Institutes of Mental Health and SAMHSA.
We like to claim that one- in- four Americans have a mental disorder. If true, then one-in-four of our nation’s most influential and wealthy struggle with mental disorders. We need to tap into that influence and money and begin using it to flex our muscles in local, state and national elections. One reason why mental health parity was passed was because many of the politicians who endorsed it had family members with mental illnesses. We should remember that!
I dream of a day when presidential candidates will value the support of the mental health community enough to attend a NAMI or MHA or whatever group’s national convention. Part of successfully raising money and buying our seat requires us to twist arms of our wealthiest. We need to do more of that. It also requires us to broader our political base. (See point one above.)
Now let’s move to step three from yesterday’s editorial.
The final lesson our movement learned from the LGBT community may have been the most important. Gays and lesbians have created a monumental shift in American culture. They did it, first and foremost, by coming out to family and friends. They did it by infusing popular culture with popular character, from Ellen to Will to Mitch and Cam. They did it by being brave and loud, out and proud.
Does that lesson apply to the mental health community as well?
You bet it does. There should be no shame in having a mental disorder, only in not helping someone who does. Hollywood television shows and movies such as HOMELAND and the SILVER LINING PLAYBOOK are finally getting us away from the old, stigmatizing PSYCHO stereotypes. We must keep moving in that positive direction by putting a realistic face on mental illness and our families.
If we can reduce STIGMA, then we can change how Americans’ think about mental illnesses and if we do that, we will be able to improve our community services and then we might discover that many of the issues that currently separate us might not be as overwhelming as they seem.
About the author:
Since I lost my job because I had bipolar disorder, I have written four books about the disorder, discussing what it is like to have the disorder and teafching people what it is like to have the disorder.
I have never missed an opportunity to speak about the disorder and to edufcate people about it. Sometimes it is difficult becaucse the stigma is so strong, but I have become less thin-skinned as time has gone on. I don’t care what people think of me when I tell them I have bipolar disorder–I just want thme to see that it is pollsible for a person to live with the disorder and not be “crazy.” I am spreading a positive message as far and wide as I can. All of us need to do this to rid the world of stigma.
!5 years ago, I wrote in a dissertation that the mentally ill will be the last group to march on Washington, after blacks, women, and gays.
Of course, we should pick up pointers, and considering our commonalities w/ the gays (i.e. the old DSMs) , their platform would be excellent for tweaking toward our objectives.
Lets start with terminology –
illness is defined as wickedness, unpleasantness
and unhealthy condition.
Wow! Put the word mental in front, and you have an explosive term sure to create fear, loathing and stigma!
What are bipolar, schizophrenia, depression, and all the other conditions that affect mood,thought, and perception, sometimes causing delusions and hallucinations? Every scientist,medical doctor and 5th grade science teacher knows that these conditions originate in the central nervous system, of which the brain is the principle organ.
So, I am not mentally ill. I have whats labeled for convenience, a bi-polar disorder, I’m as healthy as a horse, as are many I know, similarly diagnosed, who run marathons, ace stress tests, exude wellness and positivity in everything they do. Parents with bipolar and schizophrenia have been known to raise high honor students, and rise to executive levels in corporations.
If I’m not mentally ill, but have bi-polar than what am I?
I have a CNSC. CENTRAL NERVOUS SYSTEM CONDITION
Hello out there!
Nothing negative in those words.
Nothing to conjur up fear and stigma.
a NEW FACE for an age-old human condition
No ‘illness’ to frighten off the uneducated
No ‘disorder’ to connotate chaos and low function
The term ‘mental illness’ is vernacular slang, and incorrect.
Along with helping to steer stigma, I could easily write a book on how many lives have disappeared intio a state of useless hopelessness, because of beliefs in a permanent illness, instead of
a workable condition.
If we’re going to change our face, we have to change our name!
Basically, lines will be drawn around requiring people to take medication because of what it means to “require” others to take medication. It means there are people afraid of the strong to extreme emotional states of people, mostly others, and believe these states are symptoms of diseases that require forced medication. There are those that believe these strong to extreme emotions are legitimate responses to people’s lives and believe we should be more accepting of human diversity.
I don’t see how the two mindsets you described oppose eachother. They don’t. Of course, mental illness is a response to environment,and I greatly paraphrase, Therein provides an opening for discussions on prevention. And, many need medication regardless of how severe or threatening the symptoms of their illness. Mental illness is undoubedly THE most complicated, yet to be completely understood human problem on the planet!
It does need to be renamed – like a nervous system condition. It is NOT a disease that spreads like cancer
or AIDS. Its NOT communicable. Its NOT a disorder.
If it were then every nose picking, nail-biting, hair twirling, shouting and swearing human would also have to be called disordered, as there is nothing sane and ordered in those actions. Not to mention those who lie, cheat, steal, rape and murder. Those people have severe disorders, though polite society excuses many
Stigma will never go away with the label of mental illness. It translates in every language to ‘sick in the head’.
The issue that Pete is trying to bring forth is
a coalition across the United States that will organize, unite and lobby for the BEST LEGISLATION, the BEST POSSIBLE HEALTH CARE, and the BEST EDUCATION on ALL MATTERS concerning PEOPLE with MENTAL HEALTH MEDICAL CONDITIONS.
The purpose is not to spar about labels, stigmas, treatments, court orders, medications versus alternative therapys, and whatever else can be opinionated.
PEOPLE ARE DYING – PRISONS ARE HOLDING FRIGHTENED, TORTURED PEOPLE, TEENS ARE KILLIG THEMSELVES, FAMILIES ARE TORN APART DAILY WHILE LOVED ONES SINK INTO HELL WITH UNTREATED MENTAL ILLNESS.
STIGMA IS GROWING BECAUSE THOSE THAT CAN BEST EDUCATE ARE FAILING AT IT.
* Is it time yet to form a group, elect officers, set a platform, hold meetings, stage events, corroborate with the other national advocacy groups?
How many more blogs do we need? .
Learning from the LGT community — and seeing that it’s possible for attitudes to change quickly with the right “push”, which was years in the making — is an important point. Of course an early victory for the LGT community was getting out of the DSM in the first place!
The LGT community — or the LGBTAQQ — had to come to some consensus over who they were fighting for: everyday people in long-term loving relationships, not so much transsexuals/bathhouse orgy types/.
I really struggle with my own identity under the Mental Illness umbrella: are serious episodes of Axis I disorders, interspersed with long high-functioning periods, mean that I am a person living with mental illness?
Well, I continue to take meds and see a therapist — so, yes?
So there’s Mental Illness and craziness. Sometimes people act crazy
because they are in the grips of MI stuff, where some kind of treatment should be able to help, we hope, and the message is about recovery and proper support. About how people can act less crazy/different/incomprehensible over time.
But people butt up against craziness all the time and genuinely need to identify it as “other” and distance themselves from the very difficult people in their lives, for their own protection: perhaps some personality disorders, sociopaths, pathological liars, the crazy and controlling bosses of the world. It’s hard to know what kind of treatment to offer such people — who are seldomly willing anyway — and the recovery model doesn’t fit as well.
We have a strong reflex to reject people who cannot enter a shared reality with us, who just don’t make sense. We should acknowledge that reflex exists. It’s more than “stigma” and misunderstanding MI.
I’m rambling without knowing my point anymore, I’m afraid. But my difficulty is a sign of how hard pinning down this stuff down is.
Yes, you live with mental illness. The fact that you have periiodic bouts of “craziness” does not lessen the stigma that you face. Perhaps it does help that gays were removed from the DSM, but that is not something we can expect, for we are mentally ill, unlike the gays who simply have an alternate sexuality. Denying mental illness adds to the stigma rather than dispersing it.
>Yes, you live with mental illness
>Denying mental illness adds to the stigma rather than >dispersing it.
Hmmm, what was the giveaway that I “live with mental illness”? The meds thing? What if I never have another relapse? What if I only had one episode in my lifetime? …as an adolescent? …or while using substances? Does psychosis matter?
I actually do think I have a chronic propensity toward a certain kind of craziness that I need to work to keep in check — hence the meds and a bunch of other good-living things. But everyone works, or should, to keep themselves together as best they can. When things fall apart, exactly how far apart the pieces land is highly individual. Sometimes it gets labelled mental illness and sometimes not. Sometimes the person adopts Living With as an identity and sometimes not.
The label “living with mental illness” suggests a chronic condition, but I think every person has a capacity for an episode of mental illness over the course of their lifetimes. Comes with the mental apparatus. That is also stigma reducing, don’t you think? The universal way people can slide from good to poor mental health? And back?
I’m more inclined to draw a connection between the experiences of People With Psychiatric Labels and the run-of-the-mill People Without: hey run-of-the-millers, going crazy isn’t the end of the world, ya know, and those who’ve done it
can describe some of the experience in a way that emphasizes the continuum of experience from “normal” to “crazy”.
I don’t claim to have figured out this mental illness thing, but it’s just more complicated than Brain Disease…
Newton, maybe I can help you with this. A bona fide mental illness can be identified, ( diagnosed), when it is re-occurring. If you become psychotic as a result of some chemical substance such as LSD or the stuff in certain mushrooms, for instance, you are not neccessarily mentally ill for life. However, some people become permanently mentally ill as a result of drug use.
Yes, mental health wavers in all of us.A good rule of thumb for self check is to ask yourself – Am I in control?. If you’re
depressed can you snap out of it at will? If you’re psychotic, can you force yourself back to a functioning state of mind? If I were you, I would not play Russian roulette with your mental health.30 Years ago i asked your same questions – mental illness is a lot more than brain disease – it is a condition of the central nervous system that affects body, mind, spirit, everything. I would suggest -don’t focus on whether or not you’re living w/ a mental illness Definitions don’t matter. What matters is keeping a finger on your own pulse, and doing whatever is needed to keep You in control of your faculties! If it turns out you have a mental illness, deal with it! If you don’t, then deal with that! Use your intellect to know yourself, and let someone else worry about figuring out ‘the mental illness thing’. .
How I think of myself doesn’t matter in the big picture, of course. But (back to the blog) who we’re talking about when we build a campaign to reduce stigma matters quite a lot. I do think mental illness is a lot more complicated than brain diseases like Alzheimer’s or Parkinson’s and our collective confusion for how to categorize them is part of why they are stigmatized.
PS. I don’t think that *time* is what will tell whether I have a “mental illness” or not. Having had several episodes already, I think of it as a latent infection that may emerge again in the right [stressful] environment. Or not. Oh, so today it sounds like I am accepting the “mentally ill” label…
Interesting post in light of the comments on the last post. But I feel this post points out one of the major issues I was trying to get across in the comments last week, namely, the desire for some advocates in the MI community disregarding the voice of the actual persons with mental illnesses in the conversation.
I think learning from the LGBT is a fine idea. I especially like the “gay ATM” model of funding. However, I would argue that the MI community (those of us with mental illnesses, at least) do not have the financial resources that the LGBT community does, due to our circumstances. Our condition(s) keep many of us from holding well-paying jobs, which means we don’t have the access to fundraising or donors. And, because our diseases are not one of those “casserole” diseases, there’s not a lot of financial support to be gained from those not familiar with brain disorders. That’s where the challenge lies.
My family member, and all of the people I know who are on meds, many against their will, are so tranquilized that they are no longer able to work full time, most are no longer working part time either, but receiving disability checks. Those aren’t promising financial resources to build a dynamic movement like the LGBT community has.
This is the end result of forced drugging. A disgusting and violent policy only supported by those who hate people with psychiatric labels.
People who are really sick can be groggy because of the drugs, but the serious illnesses can be exhausting too. Sometimes poor people get terrible medical care and changes in drugs could help.
I have always thought that the LGBT community has given the mental health community a perfect example to follow. It’s time to step up to the plate. Life is too short to not stand up for what you believe in. The time to make a difference is right now.
Thank you, Pete.
I agree. By fighting psychiatry in the 70s against psychiatry putting quackery based DSM labels on them and taking away their rights, ALL people with quackery based DSM labels who stand to lose their rights can learn from them.
Yes, good point. DSM has lots of BS.
Sat. March 30 is National Doctor’s Day. Science and medicine catergorizes and labels – thats how it works. There are many caring, intuitive healers in medicine. None of them are interested in taking your rights. If you don;t like psychiatry, stay away from it. It works for many, and if you’re not using it for your assumed mental illness, it would follow that you would be too busy seeking out alternative therapies to be bothering with a ‘fight’
that is not yours.
Stigma will be erased if individuals with severe mental illnesses receive the treatment they deserve and. may require, whether that is provided voluntarily or involuntarily. When the general public (especially those not as knowledgeable about the symptoms of mental illness) understand that schizophrenia, bipolar, etc. are treatable illnesses whose symptoms can be managed, then there will be less stigma. The LGBT community never exhibited symptoms that were of concern and therefore they didn’t need to be in treatment to change others perception of LGBTs. As someone else wrote, they simply have a different sexual lifestyle. Not everyone is able to move easily into recovery – some people do need the support of AOT or they may end up homeless, in jail, or worse. Pete – you’re the one who mentioned that there may be a shift away from AOT by NAMI in your post last week which is why so many comments addressed that issue. If that happens, then many families with loved ones with untreated mental illnesses most likely will leave NAMI and look for another organization that supports timely, effective treatment.
Let’s hope the families who support forced drugging do leave. Then the battle lines will be more effectively drawn and these families can be shown to be unrepresentative and violent anti human rights campaigners that they are.
F4L, do you have a chronic illness that is difficult to manage even with treatment? If you go off your medication, will you be in any danger of completely losing your grip on sanity and reality?
Once, I was forced medication by negligence, that I was deathly allergic to. After losing my pulse and blood pressure I miraculously recovered. Once, I was forced medication that brought me from the brink of suicide. Once, I was forced medication that kept me from seriously hurting others. If not for forced drugs, what? A straight jacket, padded room, shackles?
Somehow, it doesn’t matter – when your life is saved and your mental health restored – I don’t give a damn what is used!
I am grateful to God and humanity for my breath today. That is love.
Years ago, according to polls provided concerning gay marriage, most Americans were not in favor. Fast forward 5 years, and more than 50% of polled Americans are now in favor. Many of the original “no” votes were based on moral issues.
The real difference is the fact that the younger generation has weighed in. My son who just turned 30 today is my constant reminder that America is constantly changing and evolving. He reminds me about how accepting his peers are of social issues that were once considered deviant and immoral. I agree that Will & Grace and Cam & Mitch have helped to present Gays as “real” people, and not degenerates whose lives revolve around same-sex relations.
Mental health illnesses are no fault brain disorders! There is nothing moral or immoral revolving around these issues! I just don’t get it!! We need to bring mental health issues into medical programs like, The Doctors, Dr. Phil, Dr. Oz, and other talk shows. The public NEEDS to see “reality” shows that are about REAL life issues that revolve around daily life with our loved ones who live with mental illness. The media, and especially TV remains an effective tool for educating the American public. Let’s start lobbying the television industry to help paint a more accurate picture of what those with mental illness have to go through to survive every day!
Most people who get serious mental illness do not recover. They have lifelong chronic illnesses. One-in-four is not actually mentally ill. Lincoln and Teddy Roosevelt were not mentally ill. Why do people repeat these things?
Reason #1: Because people can have serious symptoms of mental illness at some points in their lives and be relatively well, or really well, at others. Illness can be episodic OR chronic. If you only want to advocate for the chronically mentally ill in an LGBT-style campaign, that’s OK. But one way to reduce stigma for the chronically ill is to highlight the similarities between them and episodic-ers. And whose to say the episodic-ers didn’t just get treatment that works for them, didn’t just really recover?
Reason #2: Because the symptoms of serious mental illness are the same as less serious mental illness, but magnified. There’s a continuum of difficulties with thought, behavior, and mood.
(Wait, am I arguing the other side now?)
SMIs are chronic and like the name says, serious. People who get really nuts once or twice or have problems in adolescence and not adult life aren’t SMI.
You want to limit the term MI to the SMI? OK, no Lincoln and Teddy Roosevelt. And, apparently, no hope for recovery, since if you do manage to overcome symptoms with whatever avenue of treatment appeals to you, you weren’t MI in the first place. What do you tell those people who are young but have gone nuts once or twice? At the moment, they are indistinguishable from the SMI. Why do we need this S/MI distinction anyway?
Replace the term mental illness with some other neurological disease, like epilepsy or MS, and then look at the argument. Do people with MS need to use LGBT tactics, or any other tactics, to get proper medical care? Why not?
People will continue to avoid psychiatric “treatment” if the violent advocates of forced drugging continue to criminalize human distress.
Advocates for human rights will continue to fight tooth and nail every attempt to rob people of their human rights on the basis of a psychiatric label. Make no mistake.
You are right. Battle lines ARE drawn, as you say in your article.
We didn’t start this battle. Those who brought the fight INTO our bodies started it. And we will finish it hopefully in the next few decades.
Psychiatry’s quackery and the truth about its pathetic and pseudoscientific “evidence” base continues to bleed profusely into the public consciousness.
Those who seek to use threats and force to impose this dangerous biological quackery on us by force of law have declared war against our human rights. They will lose in the end.
Why do you hope politicians don’t go? So you can continue to rob people with psychiatric labels of a voice? So that their right to be heard by their elected representatives is robbed from them the way YOU seek to rob them of the right own their own bodies DJ?
Deleting the comments of those you are actively denying human rights to I see.
Noted.
Forced drugging is a crime against humanity.
I disagree completely. Allowing someone to remain out of touch with reality (psychotic) when they could experience sanity is cruel. Forcing meds until someone is well enough to decide whether or not he wishes to remain sane is a mercy.
You sound like those in the 60s who used to deny that mental illness existed. That did no one any good at all. I have been ill with bipolar disorder for 37 years and stable with medication for 30 years. No one forced me to take meds but I would do anything to stay on them. I would have blessed anyone who had forced me to take meds before I had the awareness to seek them myself. Forcing someone to remain ill would not be allowed with a physical illness; don’t force crazy on people
Forced drugging is dehumanizing and inhumane. If they want to force me to take a medication, then I want them to tell me how it works, and why. I want to see the studies and how they apply and not just the part they released to promote whatever drug company payed them for the opinion. In fact, to establish just the presumption of ethical standards, they might stop accepting money from drug companies that shape psychology and its methods currently more than any interaction with an actual patient. Why would you settle for allowing them to decide what will shape your quality of life? That’s no different than being forced to remain crazy.
Menatlly ill people are the most-discriminated people in the country. The stigma is not even realized by most people. When I sit in a book signing the remarks made by people are not even to be beleived. I think the most important thing we can do is to come out of the closet and live openly as people who have a mental illness but who function well. People have to get over their fear of us.
Unfortunately so many of the so called advocates of those diagnosed with severe mental illness who are interviewed in the media focus on force, and don’t talk much about access to good community based treatment, housing, etc. We need more mental health professionals speaking out in the media addressing the things that might actually encourage people to seek treatment rather than run from it. Who would seek treatment after hearing some of the scary rhetoric on tv from some of the usual culprits? I don’t imagine many people in need of treatment listen to that and think, hey let me sign up for some of that. I know I didn’t.