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DJ Jaffe

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There's No Stigma to Having a Mental Illness

Posted: 04/27/11 02:07 PM ET

Stigma is dead.

Stigma was eradicated years and years ago in many people who suffer from no-fault biological diseases. For example, stigma used to exist in men with prostate cancer and women with breast cancer. It also existed in people with no illness at all: gays, lesbians, the left-handed and other historically marginalized populations.

But over time all these groups found a cure: they simply decided that there was no stigma to having cancer or being gay, lesbian or lefty. It was not, as some claimed, a "mark of shame" or "token of disgrace." Period.

They killed stigma and recognized that what they were really suffering was prejudice and discrimination.

While eliminating "stigma" was relatively easy, requiring only a change in their own thinking, the battle to eliminate prejudice and discrimination was much harder and is still ongoing, because it requires changing others. But importantly, eliminating prejudice and discrimination couldn't be done without first recognizing that the alleged "stigma" that was preventing everyone from speaking out didn't even exist. Stigma was killed, and everyone moved on to focus on the real enemy: prejudice and discrimination.

Mental illness advocates should do the same. Declare stigma dead and move on to focus on what really exists: prejudice and discrimination against the mentally ill.

May is Mental Health Awareness Month. This year, it should be celebrated as "Stigma Is Dead Month." Next year it should be converted to "End Discrimination Against The Mentally Ill Month."

Activities should not focus on "expanding awareness of mental illness." As I wrote in one of the articles I am most proud of, current mental illness awareness activities are not only ineffective, but they are harmful. Almost all of them are designed to work by hiding the most seriously ill and parading around the highest functioning and least-symptomatic in an effort to convince the public that this somehow reflects the reality of untreated schizophrenia or bipolar disorder. It has the exact opposite of increasing awareness of the horrors of the illness. It's like trying to raise funds for hunger by only showing the well-fed.

Instead of focusing on nonexistent stigma, we should focus on eliminating the public policies that discriminate against the mentally ill and are causing so many to become homeless, incarcerated or the victims of suicide.

There are a host of those: a two-tiered health system that shunts people with mental illness to substandard medical care; laws that require people with mental illness (unlike those with Alzheimer's) to become dangerous before they can be treated; Medicaid policies that refuse to reimburse the mentally ill in hospitals; and policies that send the most seriously mentally ill to the end of the line for mental health services rather than the front.

Stigma is dead. Discrimination and prejudice really exist.

* * * * *

http://mentalillnesspolicy.org

 
 
 

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HUFFPOST SUPER USER
June Conway Beeby
09:08 AM on 06/26/2011
The truth will set you free.

So,we must not hide the reality that violence that can occur when these citizens do not receive timely and appropriate treatment. We know the agony that flows from a lack of treatment for those who suffer from schizophrenia, manic depression and other psychoses. To tip-toe around the hard realities of these diseases does not help anyone. Especially since people are well aware of these frightening incidences of violence in society, anyway.

If only citizens truely understood the realities of SMI they would demand that governments give these suffering souls the essential treatment and care. To ignore them abandons them to suffer for decades, alone,untreated--literal orphans of our health care system.

We know that scientific research brings cures to illnesses. Let's bring our search for answers to legitimate scientists.
09:35 PM on 06/09/2011
-- Here I agree: We have to fight discriminatory policies -- particularlly the ones which bar us from employment -- because we are a legitimate civil rights struggle, much like the ongoing struggles to equalize the social situation for people of color, immigrants, the LGBT community and etc. The prejudice people carry around in their heads and hearts may more time to eradicate. But the advent of less discriminatory policies, will reveal us to be the diverse and competent people that we are, and help reverse those negative stereotypes.
But we are not there yet. We are still subject to ghettoized justice. We still don't get trials before we are locked away. Forced treatment -- being strapped down and shot up with brain burning chemicals because you pissed off the doctor -- still exists. Forced electroshock is still out there and often publically funded. In NYS, about 80% of us lose our kids in family court because the law defines "mental illness" as a reason to remove children.
I know that my experiences in the mental health system have scarred me. I mourn the ones who didn't get away; I carry survivor guilt.
We have been kept by legal traditions from being part of the general society who have some basic rights including due process, free speech and freedom from job discrimination. We have been spoken for throughout the centuries by well meaning professionals, family and friends.
We don't need your descriptions of us. We speak for ourselves. Thank you
06:53 PM on 05/26/2011
The prejudice and discrimination that exist against the mentally ill is clearly a problem that needs to be urgently addressed. Stigma is not dead; it is precisely the social disapprovals and distorted reactions from the ignorant public to people with mental illness that creates the prejudice and injustice that, then aides in causes such as homelessness and incarceration.

The Committees behind the Medicaid policies and medical care laws clearly have a false and misinterpreted view on the mentally ill, and as long as this view remains stigma is and will be very much alive. We must continue to fight to break the stigma attached to mental illness in order to have a fighting chance against the public policies.
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HUFFPOST SUPER USER
Genita Love
snarky and cranky
03:42 AM on 05/14/2011
I have Bipolar II and PTSD..From personal experience, I KNOW stigma exists largely because the general public are not well educated about mental illness issues- largely due to the unfavorable reporting in the media. I've been recieving treatment for my mental health issues for just over three years. (I'm blessed and fortunate to be living in Kansas..-where we have really good MH services for those who need them.)

I'm proud and glad to admit or confess that I am active in the Consumer movement, here, in Kans as. Three years ago, I participated in a program that trains mental health consumers to become Certified Peer Support Specialists, I currently serve on a Consumer Advisory Council whose purpose is to educate, advocate and collaborate to help improve the state mental health system, and to do all we can to improve the lives of all mental health consumers in Kansas.


Recovery can and does happen....I'm not where I'd like to be, but, I've come along way from where I was three years ago prior to services. The best things the general public can keep in mind is that people with mental illness are just as human as you are...the only difference is we have additonal struggles and challenges that are barriers to our reintegration into our communities. Secondly, people with mental illness can be productive members of society...we have strengths, talents and gifts to offer to help others...Recovery is about people!
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HUFFPOST SUPER USER
Lori Rob
right wrong
06:58 PM on 05/12/2011
It would be especially nice to eliminate the stigma first within ourselves..for those of us with the little known and less understood mental illness known as borderline personality disorder, trying to explain to friends and even family, in my experience, has been nothng but total invalidation..Not sure if it makes them ill-at-ease, they don't care, or what..I guess that's Stigma..in a nut shell..no pun intended..we just schlog along, messing up and cleaning up after ourselves with little public understanding of this disorder that wreaks emotional havoc on its victims..
08:48 PM on 05/11/2011
I am sick and I know I need help, but I am afraid to give into the healing process because I have stigmatized myself. I am afraid to admit that there is something wrong. I NEED my family and whatever friends I have left to see me as a whole person, not someone "defective", "lacking". I keep telling myself that depression is a brain disorder, but my heart tells me otherwise. I don't want to be sick. I don't want them to think of me as "less than". I just want them to see ME, but I know this will never be. It makes me so sad that most days I would rather hide under the covers than go out and face the world.
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HUFFPOST SUPER USER
Lori Rob
right wrong
08:20 AM on 05/15/2011
2brnot2b..I've learned to live with it...it's been hard, especially in the area of relationships, work/boundaries, impulsivity, etc. but I sought help, early on, tried to stay strong thru out not allowing it to get the best of me. I slip backwards now and then, but mostly, moving forward through it. it's not like bipolar whereby you're stuck with it for a lifetime, it does lighten up and you can live a normal, productive life. I don't know, just think of yourself as prizefighter swinging at it every step of the way..i mean, it's like life in general, for most people it is an ongoing battle...do not be embarrassed..it's not your fault...you will be ok..
10:58 AM on 05/04/2011
I see what the author of this thread is trying to say, however part of me feels as though what he is saying is no better than someone who doesn't understand mental illness saying 'just snap out of it' to someone like me who struggles daily just to have a normal life.

I have suffered from severe and debilitating depression and anxiety since childhood. There are days I look at where I am in life and I'm amazed I'm still here, but the fact that I was able to work myself through college, work, and continue to do things that most people take for granted is sometimes amazing to me, and at times just downright exhausting.

But it's been drilled into my head since I was a kid that mental illness of any kind is a weakness, and you can't show weakness, ever. My parents could not have an imperfect child, so I had to hide a lot of what I was going through on top of dealing with my issues. So I was very ashamed of what was going on, and there are times I still am. Sometimes I'm still ashamed that I have to take medication in order to keep from completely melting down, and I'm ashamed that I can't just 'snap out of it'. When you are taught from childhood that there is something inherently wrong with you, it's hard to wake up one morning and just say 'I'm fine'.
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
09:35 AM on 05/05/2011
Great post. (And love your pseudonym) I understand, "it's been drilled into my head since I was a kid that mental illness of any kind is a weakness, and you can't show weakness, ever." The belief that mental illness is a 'weakness' is ignorance. If I were to rewrite my original post, I would have made that point clearer: That what people are experiencing (discrimination and prejudice) is the result of ignorance. It is not the result of "stigma" ("Stigma" is defined as "a mark of shame or disgrace." Mental illness is not that).
I don't expect anyone to wake up and say 'they are fine'. I do hope they can wake up and say, "hey, before I had mental illness, I didn't know what it was either. And maybe these people who call people with mental illness mean names, are just not educated about the reality."
06:03 PM on 05/27/2011
Anxiety/Panic disorders,
There are a few facts that are almost never discussed about fear based disorders, to begin with there is the original onset of the disorders that can begin with the overused words of out-of-the-blue panic attack, or the slow almost insidious onset of deep trepidation and apprehension of anxiety! Neither one is given an explanation as to why they occurThere would be no further appearance of either form of anxiety if we were not to dwell on the frightening aspect of a return appearance of either one. It is unfortunate that this fact is never mentioned to those suffering these experiences, they long term of either or both of these frightening dilemmas is simply a joke on us by the way we keep on obsessing over the fearful symptoms created by both. Not a mysterious or strange disorder but simply a bad habit turned compulsive by our innocent minds!
ReleaseFromFear "The Jokes On Us/The Innocent mind" George Christophe
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HUFFPOST SUPER USER
Jake Thomas
elastic
01:05 AM on 05/04/2011
When you consider that most of the chronically homeless and most of the people who clog our prison systems are in some way affected by mental health and or addiction issues. I have bipolar disorder, I am not particularly high functioning nor am I particularly low functioning but I am chronicly unemployed.
Why am I and so many of my brothers and sisters with mental health issues not afforded the success of the general population? Why are so many of us incarcerated or homeless? The public knows about these issues, we need to get there attention.
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
09:36 AM on 05/05/2011
Thanks for post. A new study shows how to reduce incarceration of a subgroup of mentally ill people by a factor of 8 http://mentalillnesspolicy.org/kendras-law/research/reduces-arrest-link.html
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HUFFPOST SUPER USER
18
05:27 PM on 05/01/2011
Today marks the 3rd anniversary of my twin brother's death. It also marks the beginning of mental health awareness month. Paul had severe, chronic, treatment resistant schizophrenia, yet was released from the state hospital system, institutionalized after over 20 years of being a patient in the state hospital system. This is his story. The 10 years after his release was hellish, but he was one of the lucky ones, he was never homeless or incarcerated. Please read this, then contact your members of Congress and ask them how they can allow the federally sanctioned discrimination to continue? Demand they fully repeal the Medicaid Institutes for Mental Diseases (IMD) Exclusion.

http://psychservices.psychiatryonline.org/cgi/content/full/61/8/741
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HUFFPOST SUPER USER
18
05:19 PM on 05/01/2011
Yes, discrimination does exist and the federal government is one of the worst perpetrators. By allowing the Medicaid Institutes for Mental Diseases (IMD) Exclusion to exist for over 45 years, hundreds of thousands of people with severe, persistent, chronic mental illness are now homeless, in prison, or dead. You have said it a million times before DJ, but I'll say it another million times...denying coverage for long-term care for someone with a brain disorder when people with other illnesses have access to long-term care is discrimination, pure and simple. In my opinion, the IMD Exclusion is in direct violation of the Equal Protection Clause of the 14th Amendment and goes against the intent of the Federal Parity Bill enacted recently. That the federal government allows the continued suffering of one of the most vulnerable sections of the population is a national disgrace!
05:06 PM on 05/01/2011
For Mental Health Awareness Month I have posted "Leaving the Seclusion Room (some not-so-crazy notes on recovering from mental illness)" to my blog. Hope you will take a look:
http://www.reinventingtheeventhorizon.wordpress.com/2011/05/01/leaving-the-seclusion-room-some-not-so-crazy-notes-on-recovering-from-mental-illness/
Kathryn McCullough
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
09:39 AM on 05/05/2011
Thanks for sharing. It's a story I think many could benefit from reading. Love the art too.
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AdorableHero
Conquer your dark side or become it.
02:49 PM on 04/30/2011
I think of it as probably being kind of like my left-handed friend who lives in a right-handed world, or my parents who have to take blood-pressure medication to keep staying alive - not so much a flaw of character but being different and having a need. In a way, I think my condition (bipolar) is something to *use* because of the stuff I've read about its links to creativity. I like to paint and to write - Watch me on a "manic writing session" - my typing fingers smoke.

I think some responsiblity might be borne by those who have these conditions, though - the high functioning people, at least. I *resisted* a diagnosis of bipolar (and the proper help) for the longest time because my brother has it and used a whine of "but I'm bipolar!" to excuse for being a jerk. I've since learned that this condition doesn't make jerks - jerks make jerks. It took some... extremity... in my life to accept what I was.
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
07:49 PM on 04/30/2011
thanks. its a fave of mine
01:09 PM on 04/30/2011
I was diagnosed with Bipolar Disorder, Borderline Personality Disorder and Post Traumatic Stress Disorder 16 years ago, after years of denial and insistence that nothing was wrong with me until three suicide attempts in as many months led to a state committal to a psychiatric facility for 18 months. I hated every minute, but am eternally grateful it helped me to save my own life!
I never sought help on my own because of fear. All I knew of mental illness was that people who had it were somehow "less than". They weren't normal. They were to be pitied and feared. I now know better. We are not "less than" anyone or anything. We do not want nor need pity, And we are not to be feared. As far as not being normal... What is normal, anyway??? A pigeonhole ideal that no one can really live up to if you think about it.
We fear what we do not know about and that fear leads to prejudice and discrimination.
I can say there are no stigmas and mean it, but I dream of the day I can say there is no ignorance and mean that, too!
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
07:49 PM on 04/30/2011
thanks. i faved this
01:09 PM on 04/29/2011
Wouldn't that be great if simply declaring stigmas as dead it made it be? The reality is, I talk to people everyday who believe that suicide is selfish or a weakness of character and those with a mental illness should just be able to "think" themselves "normal". Just yesterday a young lady agreed to share her story of hope with us... a decision that came after three years of family-ordered silence to avoid the "embarrassment of suicide". She still felt is necessary to use a pen name and change identifying facts so her family wouldn't find out. I see people everyday here in Chicago who are mentally ill and live on the streets. I also see people who are noticeably frightened of them and go to great lengths to avoid interacting with them. Why?

I agree that action needs to be taken to end the public policy-driven discrimination against those with mental illness. But, we also need to create a shift in thinking on an individual level in order to foster an environment where healing can happen. That begins by eliminating some very real stigmas. @NoStigmas
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HUFFPOST BLOGGER
DJ Jaffe
Founder, Mental Illness Policy Org.
03:04 PM on 04/29/2011
I think you agree with me. Believe who believe suicide is weakness and people should be able to think themselves normal are people who need education. The woman who felt is necessary to use a pen name is not the 'victim' of anyone else, she is a victim of her own belief that she has to hide. No amount of educating others can change her. Until she changes herself. At best, you are making the case that anti-stigma efforts have to be aimed at people with mental illness, not others, since they are the ones who believe there is stigma. I'll ask the question I keep asking: If stigma exists, then no PSA is going to change it. It is a reality. If stigma doesn't exist, then a PSA isn't needed. Which is it? Tx for comment
12:31 PM on 04/29/2011
I see your post as insightful, but flawed in the extreme position that you are taking. It is always worthwhile to highlight those problematic policies regarding mental illness. However, all inequities are not strictly due to discrimination.

Stigma or a “mark of shame” related to mental illness is perpetuated by the myth that mental illnesses are some sort of character flaw that the person with the illness is to blame for. This stigma is still strong enough that many people are afraid of losing their jobs or friends by disclosing that they have a mental illness. The stigma is also strong enough to convince policy makers that to some extent mental illness is not a legitimate illness deserving of the policies other major illnesses get.

Inequity in policy does not automatically translate into discrimination. One has to look at the thought processes of the policy makers. The stigma and myth that mental illness is a character flaw is a large part of the reason why there is no strong voice for mental illness at the policy table- people were embarrassed to speak out about their illness. Additionally, the policy makers themselves think of mental illness as less “real” then other illnesses.

Blaming individuals with mental illness for “believing” that there is a stigma, is unfair and uncalled for, especially from a mental illness advocate. The stigma remains very real, and has a strong hold on both policy and daily social and work situations for people with mental illnesses.
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DJ Jaffe
Founder, Mental Illness Policy Org.
03:09 PM on 04/29/2011
I thank you for a clear post. I would just ask you to substitute the words "mark of shame" for "stigma" . Then you would be saying "The mark of shame is strong enough that people are afraid of losing their jobs". I do not believe that having a mental illness is a mark of shame. Someone who fires someone for having mental illness is discriminating and should be fired. I could go on, but you say 'stigma' is perpetrated by a 'myth'....A myth can't perpetrate anything. A myth is a myth that truth can reveal. So many people with mental illness believe they have a 'mark of shame' that they can't recognize they have no mark of shame, that they are the victims of discrimination