Friday, July 12, 2013

Silence Kills - The Stigma of Mental Illness

I don't use the s-word.  I hate this title.  I use it only because people who need this post will use it when they google.

I don't use the s-word.  But here it is.

First from Google:

Definition of STIGMA

Noun
  1. A mark of disgrace associated with a particular circumstance, quality, or person: <the stigma of mental disorder>.

Synonyms
brand - stain - taint


Wow.  Did you catch it?  Mental disorder is the illustration for the word that means a mark of disgrace.

Now from Merriam-Webster:

Definition of STIGMA

1
a archaic : a scar left by a hot iron : brand
b : a mark of shame or discredit : stain <bore the stigma of cowardice>

So, like, who would want to take that on?  Who would want to pin the button of disgrace, shame, discredit on her chest, branded?

Me, that would be me.  Bring it on.

Now let's go somewhere else.

From Google:

Definition of PREJUDICE

Noun
Preconceived opinion not based on reason or experience.

Synonyms
noun.  bias - preconception - detriment - prepossession - harm

And from Merriam-Webster:

Definition ofPREJUDICE

1
: injury or damage resulting from some judgment or action of another in disregard of one's rights; especially : detriment to one's legal rights or claims
2
(1) : preconceived judgment or opinion (2) : an adverse opinion or leaning formed without just grounds or before sufficient knowledge
b : an instance of such judgment or opinion
c : an irrational attitude of hostility directed against an individual, a group, a race, or their supposed characteristics

Now let's come back to Prozac Monologues:

Definition of STIGMA

1
a when used by somebody who is the object of the stigma: the internalization of somebody else's prejudice

b when used by somebody else: a mechanism of diversion that calls on the object of one's own prejudice to bear responsibility for that prejudice.

Got it?

Prejudice Against People With Mental Illness

When there are 283,000 people with severe mental illness incarcerated on any given day, plus another 30,000 in forensic hospitals and only 40,000 people with mental illness in non-prison hospitals, that is not stigma.  It is prejudice.

When NIH spends $2013 for research every year for each person living with HIV/AIDS, $228 for each person with breast cancer and $21 for each person living with bipolar or depression, that is not stigma. It is prejudice.

When psychiatry scrapes the bottom of the doctor compensation scale (only family practitioners are paid less), when mental health services are optional services under Medicaid, when private insurers and the states subcontract out their mental health coverage to get around parity laws, when low reimbursement rates create a psychiatrist shortage, so that psychiatrists, if you can find them, do not even accept Medicare/Medicaid patients and are out-of-network for most private insurance companies, that is not stigma.  It is prejudice, built into the economic structure of health care.

As Merriam-Webster defines it above, these examples are injury or damage resulting from some judgment or action of another in disregard of one's rights.  And yes, I mean rights, in the equal protection of the law sense of rights.  People with mental illness experience injury and damage resulting from other people's prejudice.

That we are not howling, in our state legislatures, at the New York Stock Exchange, at the National Institute of Health, in front of the courthouse and in the streets is a sign that we have not figured out that we have the right to be treated the way anybody else with any other illness is treated -- now that is stigma.

Silence Kills -- the AIDS Crisis

So back in the mid 80s, people were dying from this strange disease that nobody knew anything about, and what they did know was wrong and fed their fear and prejudice.  People with AIDS were lying in hospital beds, and hospital workers would not enter their rooms. Children with AIDS were forced to drop out of school.  If you were infected, you would be nuts to admit it.

Even saying the word was stigmatized. Is that why Ronald Reagan, President of the United States during this major public health crisis, never did?

In March, 1987 people with AIDS created ACT UP to end the silence. And boy, did they end the silence.  They blew an air horn to drown out the opening bell on Wall Street, protesting profiteering pharmaceutical companies.  They occupied the FDA.  They picketed the Republican Convention.  They interrupted Dan Rather on the NBC Nightly News. Seriously, they jumped out in front of the live camera.



They got noticed.  And you know what?  It didn't kill them.  It was AIDS that was killing them.  So they took on that hot iron brand of all the dreadful names they were called and all the dreadful ways they were treated, and they threw America's prejudice back in its face.

And when they changed, America changed.

Sure, not everybody is good at acting up.  But they inspired all the rest of us, even those of us who are not infected with HIV but who lived with another stigma, another fear to Come Out.  Today, not only does everybody in the nation know somebody who is gay or lesbian, but everybody also knows that he/she knows.

Yes, there is still prejudice.  Yes, gay men and lesbians, especially the young, get fired, bullied, beaten up and killed.  But when we sucked it up and refused delivery on stigma, on our internalized oppression, then patients got the research dollars needed to turn HIV/AIDS into a chronic illness instead of a death sentence.  And last month all the rest of us got our constitutional rights under the fourth amendment of the constitution when DOMA fell.

Coming Out Works -- Mental Illness

Us loonies can learn a lot from Gay Pride.

You might even call coming out an evidence-based practice for helping people laboring under the delusion called prejudice.  Just as it worked with gay and lesbian people, familiarity with people with mental illness has been shown to be associated with less desire for social distance.  Social distance here means the desire not to have people with a mental illness as a neighbor, friend or co-worker.  Social psychologists use the concept in research about prejudice.

Our findings have implications for strategies to address stigma. Approaches to social change that increase the public's familiarity with serious mental illness will decrease stigma. Social psychologists have examined several variables that are relevant to ethnic prejudice and that could be adapted for research on contact with and stigma surrounding persons who have mental illness. One important variable that affects contact is opportunity: members of the majority must have opportunities to interact with members of minority groups if stigma is to be reduced (36). Thus persons who have serious mental illnesses must have formal opportunities to contact and interact with the general public. Other factors that augment the effects of interpersonal contact include treatment and perception of the participants as equals by members of the public (37,38), cooperative interaction (41,42), institutional support for contact (41,42), frequent contact with individuals who mildly disconfirm the stereotype of mental illness (43,44), a high level of intimacy (45,46,47), and real opportunities to interact with members of minority groups (36). Each of these factors suggests specific hypotheses on how contact between members of the general public and persons who have serious mental illness can be facilitated.

Well, this study conflates stigma with prejudice.  But you get the idea. The way to reduce whatever you call it on the part of the people in the majority or the privileged position is to increase positive contact with people in the minority/disadvantaged position.  But for that to work, the majority need to know the minority.  In other words, the minority need to self-identify, to come out.

The medical profession is a special case.  The prejudice of the medical profession against people with serious mental illness is costing us years off our life.  More to come...

flair from facebook.com
images of prison bars and money bag from Microsoft.com
photo of Ryan White by Wildhartlivie, used under the GNU license
photo of Act Up graffiti by Rory Finneren, used under the Creative Commons license
t-shirt image from www.cafepress.com/+crazy-meds+t-shirts, used by permission

3 comments:

  1. The sad thing is that while HIV/AIDS was a "gay" disease, they still had trouble with funding. But when hemophiliacs and heterosexuals started getting it, more people sat up and took notice. I used to work at Genentech on the gp120 HIV vaccine before they split off that entire project into a separate company. Was fortunate to meet Don Francis. :)

    And don't even get me started on why viagra is paid for by insurance while many types of birth control are not.

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  2. As you know Willa, I work in the behavioral health field, and I couldnt't agree more! I see it every single day.

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  3. This was the most awesome piece i've read on stigma for a long time. Before I had my first episode, I really did fit that 'perfect girl' stereotype - smart, funny, hardworking, educated, kind, attractive. Then after people witnessed me manic, it all changed. I was "crazy", my word wasn't credible, my opinions weren't valid. Even my emotions had to have some underlying correlation to my disorder - I couldn't just be 'upset'. And yet, i said screw them all. i announced my Bipolar, I shoved it in their faces. My psychologist told me not to, and I said why should someone keep their cancer, their diabetes, their asthma a secret? I'll admit, sometimes it feels like no matter how many awards I win, no matter how highly I achieve, it will never mean anything because at the end of the day, i'm still Bipolar and therefore I don't count. I will continue to shove BP in the faces of people until they notice it til the day I die.

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