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Hate the DSM? Boycott Normal!

Jan 3 2012 | Comments 6

From one of my most beloved organizations, MindFreedom, comes an effort to challenge notions of normalcy as the American Psychiatric Association meets to unveil the DSM-5. From MindFreedom.org:

Free thinkers unite in an international campaign to question how psychiatric corporations try to control us and our democracy through their misguided idea of “normal.”

Be part of peaceful protest of the American Psychiatric Association, everywhere, especially Philadelphia, on 5 May 2012.

Occupy the American Psychiatric Association!

MFI calls on mental health consumers, psychiatric survivors and allies to Boycott Normal in response to the American Psychiatric Association’s preparation for a fifth edition of Diagnostic and Statistical Manual of Mental Disorders.

DSM-5 would be the latest edition of what is widely known as psychiatry’s “label bible,” used to determine if people can be diagnosed with mental ‘disorders’ or ‘illness.’

Today, we challenge normality and celebrate creativity and diversity. Please join us!

Want to get involved? If you’re in Philly, email Susan Rogers at srogers@mhasp.org. She’s the nicest person on earth, so you won’t be sorry. Also, click HERE.


liz | 3:35 PM | BIG PHARMA, hospitals / hospitalization, meds, politics, stigma, boycott normal, dsm-5, mindfreedom

If You Do Nothing Else Today, Read This

Apr 2 2010 | Comments 0

An incredibly eloquent submission by Joe Gutstein.

Let’s imagine for a moment that you are long into the public mental health system. You have been in the hospital multiple times, in a couple of partial hospitalization programs, and have spent years in sheltered workshops and day programs. You’ve received the Prophecy of Doom, “Too sick for too long to get any better.” You’ve heard plenty of statements beginning with “You can’t, You won’t, and You will never.” You’ve been told endlessly that something is intrinsically (genetically) wrong with you and the only thing that will truly save you is a medication yet to be discovered. You’ve also been told that the most important thing you can do is get on SSI or SSDI in light of the prolonged and persistent nature of your illness. You’ve been told to engage in meaningful activities generally limited to walking, listening to music, and reading. You’ve been told countless times to avoid any stressors which might be associated with more rewarding activities and these stressors will doubtless lead to yet another hospitalization. You’ve been told so many things.

You’ve lived through several successive Eras: Psychosocial Rehabilitation, Evidence Based Practices, Transformation, Recovery and now Recovery and Wellness but the only thing that actually changed was your medication. You’ve been referred to as a patient, a recipient, a client, a consumer, a prosumer, a self advocate and now a “person with ….” but everything is the same at the hospitals, the sheltered workshops, the partial hospitalization programs and the very day program you now attend. You are now told pursuant to the Recovery model that you are suddenly empowered but what evidences your empowerment? What is it in your life that is now different? When did you last hold a meaningful job, live in decent housing, go on a date, attend to a party which wasn’t held at 3 pm or have friends over to your place? Has your health improved? Has your circle of friends and acquaintances changed? Has your income increased to provide for more options? What activities do you now engage in which you wouldn’t have before you were empowered?

Are you empowered? Not really, nothing has changed in your existence. What you do have is a familiar long standing delusion in which you are empowered. You imagine, it is part of your symptomatology, that you can provide anyone anything and everything with a CGI script. This is an empowering belief within your disempowering reality and among all the other folks at the day program it gives you a unique identity, a unique story where being unique in other areas might not be highly regarded. Fortunately, there is no impact on your role as a person in the day program unless you chatter away about it. (No more so than your peer who believes he is being watched by friends on another planet. After all, he is no longer alone all the time. Someone is watching over him where no one else might otherwise care about him.)

What is going to replace this powerful delusion and that which accrues to you by virtue of it? Let’s consider your options and the system of supports and services which will assist you in replacing it. Knowing that it is best not to ask for anything specific which might fall beyond the groups found at the day program, You say, “I want to be empowered.” The reply is “Of course, we can help you with this. Did you know that the day program has an Empowerment Group?” (You knew there was an Empowerment Group.) Consequently, you are signed up for the day program’s Empowerment Group. It meets in the same room as the Socialization Group which was going to help you get a date on Saturday night and the Pre-Vocational Group which was going to help you get a meaningful job. But you know the folks in the Empowerment Group. Not a one has become empowered. (The group meets weekly and all the chairs are in a therapeutic arrangement. There are handouts and members of the group so inclined read aloud from the handouts.)

So in the final analysis, you have the delusion and the Empowerment Group. The delusion is empowering but the Empowerment Group isn’t. Sadly, no one asked you the right question in the Era of Wellness & Recovery. Now – for the first time – the very question he or she would want to be asked in the same circumstances is being asked, “What do you need to thrive?” What is it that would lead you to hope for a life where the delusion has no value and might be patently detrimental. And for once you truly know that your answer shouldn’t be limited to something that happens in another group but involves real skills, fostered and facilitated in the real world with services and supports which promote a life. And just maybe you’ll now believe in the possibility of that date on Saturday night and a meaningful job for this new reality is more satisfying and empowering then any long held delusion.


liz | 11:05 AM | DISABILITY, SCHIZOPHRENIA, anxiety, bipolar disorder, depression, hospitals / hospitalization, meds, politics, stigma

Liveblogging Primetime Outsiders

Aug 25 2009 | Comments 18

All the below is about this show.

Madigan: They didn’t flatter you with that lighting.

David Oaks: You’re looking so handsome! I had no idea. Your eyebrows are very sexy. (I’m completely sincere.)

“But critics worry …” That’s journalism-speak for “We don’t have any specific sources who say this, but we’ll generalize it so we have reason to focus on …”

… violence. That’s what they’re focusing on. Why am I not surprised?

So of all the things they could talk about related to Mad Pride — and related to mental health — this is what they’ve come up with: criminals and violent crime. Ugh. TV is so predictable and depressing.

Okay, so now we’re telling the story of a kid with hallucinations and delusions (the CIA, yadda yadda) who KILLS HIS MOTHER? Does the average American viewer understand how fucking rare this kind of thing is? That it’s not the necessary result of deciding not to take meds?

On to the withdrawal story: Clearly, the program wasn’t looking for a success story. This poor woman who decided to do the show so they could feed off her misery — I knew that’s what they wanted. Is she doing the withdrawal in conjunction with a doctor? Who the hell knows? The show doesn’t tell you. It hardly tells you her name. And …

Oh! There it is again: “Critics worry … ” (that she’s going to be “a time bomb” without her meds). Who are these critics worrying about this girl? Frank Rich? David Denby? I’d love to know.

“Violence is unpredictable with or without drugs.” Brilliant script.

Blurry homeless images. Madigan cello-ing. … This show is so bad, it’s like a joke. I guess it all goes back to what producer Ia Robinson told me, when we discussed my being on the show: She doesn’t have any friends or family who have mental problems, so the whole topic was like “walking on the moon.” Yes, that’s the phrase she used. The show should’ve been blasted out to Mars.

Except Joey P. He’s delightful and a voice of reason.


liz | 9:34 PM | SCHIZOPHRENIA, alternative treatments, bipolar disorder, celebrities, criminal justice system, depression, hospitals / hospitalization, meds, philadelphia, side effects, stigma, suicide, violence

The Donut Thing Won’t Die

Aug 6 2009 | Comments 12

I don’t know what’s going on, but suddenly the site is getting a lot of comments on the Psycho Donuts dust-up. To fill you in, there’s a donut shop in California called Psycho Donuts that uses mental illness as its theme to sell donuts. Here’s how the store’s website describes the theme:

Psycho Donuts has taken donuts to the next demented level. We bid a fond farewell to the tired, round ring of lameness, and the drab, time-weathered environment of donut past. Psycho Donuts has taken the neighborhood donut and put it on medication, and given it shock treatment.

Psycho Donuts are very unique and, well, crazy. Our name comes with a commitment to not only be the craziest/fun donut experience you’ll ever have, but one of the most unique places in the South Bay (see blog).

Try our signature Smores Donut; or for something different, how about a Green Tea Donut? Even if you’re not certifiably insane yourself, you’ll still find a handful of donuts from the past.

As a donut lover, this is an issue close to my heart. I mean, a Green Tea Donut? Is that even legal? I’ll stick with Boston Kreme, thank you, and yes, I’ll spell it that way until I die.

But the “Nutcase” display case and the padded cell in the store don’t sit well with many mental health advocates, who fear the store is stigmatizing, especially the folks at NAMI’s StigmaNet. Yet to tell you the truth, the more I think about it, the less I care. Wait — don’t hate me. It’s just that there are so many other things that are more important, I think, and the fact that this, of all issues — a single store in a single town — is generating so much controversy, seems kind of limited to me.

For instance, I got some other mental-health-related news from some people via email while I was on vacation, and without blogging about it further, I’ll just give you the broad strokes (no attribution because I’m not sure if my tipsters want it):

Also in California, L.A.’s homeless lose out in settlement

Recent news quote: “The secretary of defense is required to have a plan in place by September 2013 to increase military and civilian mental health personnel available to our troops and their families.”

Antidepressant use doubles in US, study finds

N.J. psychiatric hospitals to release 300 patients under lawsuit settlement


Suicides rising in US military

American Medical Association study: Adults near WTC disaster still being diagnosed with asthma, PTSD

I could go on and on. Every day I see headlines I worry about, and get emails from people who are suffering right now. Those people don’t give a shit if there’s a “bipolar” donut (pictured). They just want to know: Is there anything that’s going to ever make me feel better? Can I survive this? Why can’t I get out of bed? Can you help me? Can anyone help?

Personal urgency and large-scale issues slap me in the face in a way this donuts thing just doesn’t. Yet the comments keep coming. I don’t know. Maybe I’m wrong.


liz | 1:55 PM | Funny or Offensive?, media, stigma

People First Language

Jun 30 2009 | Comments 19

One of the biggest challenges I’ve had in the 10 years I’ve been writing on the subject of mental illness is the evolving use of language around disabilities. Sometimes I’ve been relieved by change; other times I’ve been frustrated. I recently had the opportunity to start thinking about this again because I accidentally let a writer use the phrase “wheelchair-bound” in an article I edited. Afterward, the subject of the article objected, and I felt terrible. I wasn’t hip to that particular change, but in the future I won’t use it again.

Often, the lack of a consensus stymies writers and members of the media. In my case, I’m sort of okay if you call me “bipolar,” but there are many other people who think that’s terrible — and that you should only say “person with bipolar disorder” or “person who has been diagnosed with bipolar disorder.” As a writer concerned with rhythm and clarity, I have to object to the latter for myself. Yes, I’ve been diagnosed that way, but given that I concur with the diagnosis, I’m comfortable saying “I have bipolar disorder.” A lot of people object to “a person who suffers from bipolar disorder,” but I remember just a couple years ago when that was absolutely the most appropriate language.

One thing I feel we’ve mostly agreed upon: To call a person schizophrenic is really out of date. As in: “I think he’s schizophrenic.” In clinical contexts that emphasize recovery, people definitely say, “I think he has schizophrenia,” if not something more progressive, like the examples above. There’s something historically uncomfortable about the word “schizophrenic” that hasn’t yet accrued to “bipolar,” if only because the illness (oops) only recently shifted from “manic-depression.”

And now to that oops — some people no longer like to say “mental illness.” Some prefer “brain disorders” but others like to go in the opposite direction and say, well, I’m not even sure anymore. Because I subscribe to some of the horrors that many people rail against (like that my symptoms are part of an illness; that medication can work; that not all of the DSM-IV isn’t balderdash), my language may, at times, be less People First-ian than that of others.

For example, I wear two hearing aids and have been, for some years … hearing-impaired? Suffering from hearing loss … ? Partially deaf .. ? (I am not, however, Deaf. That I know for sure.) My friend and I talk about this sometimes because she is partially deaf (with much more impairment than I have) and has been so since childhood. But even she doesn’t know what the hell to call it. If she meets someone who’s like a bit more deaf than she is (but not Deaf), she doesn’t know what to say to contextualize herself. It’s so weird.

Maybe because I was a translation scholar, I love this kind of discussion. I’d be interested to hear (but talk loud! Heh.) what you all think of People First language, in all its permutations.

[Button (that I should really get for public situations) available here.]


liz | 2:55 PM | DISABILITY, SCHIZOPHRENIA, bipolar disorder, stigma

You Don’t Have to Walk Alone

May 28 2009 | Comments 9

Come on, peeps. Don’t forget about the NAMI Walk. If you’re in Philly this weekend, the info is below. To register go to the website here.

Location: Memorial Hall
Date: May 30, 2009
Distance: 5 K
Check-in: 7:30 am
Start Time: 9:00 am

For more information about this event, please contact:

Neen Davis
neendave@aol.com
Phone: 215.886-0350

You may also contact:
Greater Philadelphia NAMIWalk | CCaruso@NAMI.org
Phone: 215.886-0350 | Fax: 215.886-6974

Family Team Chair: Neen Davis
610.584-8464 | neendave@aol.com

Honorary Chair: Joseph A. Rogers, Chief Advocacy Officer, Mental Health Assn of SEPA
215.751-1800 | jrogers@mhasp.org

Business Team Chair: Bob Waters


liz | 12:42 PM | Song of the Day, philadelphia, stigma

Is Driving a Civil Rights Issue?

May 5 2009 | Comments 12


Thanks to Joe for sending me this article about a man who wanted a driver’s license despite being diagnosed with schizophrenia. In my experience in community mental health, getting a driver’s license was basically impossible with such a diagnosis; psychiatrists didn’t want to sign the paperwork allowing a person to apply for a license. It was something that distressed me to no end. When I reported the problem to the city authorities, they were appropriately appalled. But nothing changed. A man would go in, ask for a signature that would allow him to simply take a permit test, and be rejected. Yet at the same time he was being told not to define himself by his diagnosis; what a mixed message. He was being told he could recover and lead a “normal” life. But what kind of life is it without being “allowed” to drive?

What made me angry is that I know plenty of incompetent drivers who shouldn’t be on the road, and they don’t suffer from mental illness. I also know drivers who have severe mental illnesses who acquit themselves quite admirably on the roadways (myself included). It’s a violation, in my opinion, of a person’s civil rights to prevent them from applying to get a license.

One woman who did get approval was empowered by it. She failed the permit test again and again, but it never ceased to be a goal, which fit in with the messages given by the community health center: Make sure the clients set goals for themselves; it gives them hope. Perhaps it was an unrealistic goal for her. I don’t think she’ll ever drive. But it was the trying that mattered, and if she ever gets behind the wheel, I hope she drives far away into the sunset with a great song on the radio. Just for fun.

A Guy, a Car: Beyond Schizophrenia by Ronald Pies M.D.


liz | 9:01 AM | DISABILITY, SCHIZOPHRENIA, bipolar disorder, depression, hospitals / hospitalization, meds, side effects, stigma

Good Morning America, Et Al: Mental Illness Made Her Do It?

Apr 17 2009 | Comments 47

Melissa Huckaby is charged with murdering and raping Sandra Cantu, a little girl in her care. In an interview with Good Morning America, her ex-husband is asked, insistently, about his ex-wife’s mental health. Check out the video of the interview here.

I know it’s valid to ask about her mental state, but the way it’s done in this instance makes me uncomfortable. I notice the Australian coverage of the case doesn’t mention the possibility of mental illness, which is nice, considering she hasn’t even been proven guilty yet.

Perhaps I’m being overly sensitive, but I resent the persistent connection between violence and mental illness that’s played up in the press. I mean, there’s a whole article here about why the insanity plea in this case probably won’t work. It begins:

The fact that the woman charged with killing Sandra Cantu was recently mentally evaluated through the San Joaquin court system raises the question of whether she might use an insanity defense if the case goes to trial.

Emphasis mine, because this kind of speculation is ridiculous! It’s followed up by:

“She might be extraordinarily mentally ill but still legally responsible for the crime,” said Loyola University criminal law professor Laurie Levenson.

Or she might frickin’ not be. WE DON’T KNOW YET. All this article — and coverage like it — does is foster the linkage between mental illness and crime. And the funny thing? Here’s all we know for sure: Her family may have said that she might have been depressed after her divorce.

Eff you, media world. I’m sick of it.


liz | 1:40 PM | criminal justice system, depression, media, stigma

Stigma in My Sleep

Apr 14 2009 | Comments 7


Last night I dreamt that it was revealed that Al Franken (who won, by the way) had schizophrenia. People were very upset about it. He got on a bus with me and some people I knew, and everyone was nervous around him, as though he might “go off” at any moment. When we all arrived at our destination — some kind of summer camp — Franken disappeared, and everyone got very uncomfortable with his absence. We looked around and finally found a bathroom that was locked. We heard a struggle inside. We pried open the door and there was Franken, stuffing a small girl’s body into a paper bag. He had killed and mutilated her.

Isn’t that horrible? What’s (possibly) worse is that because I worked in the mental health field, I was expected to be able to handle things. I took the bag out of his hands and pulled the folded body out and lay it down on the floor. I knew I was supposed to be grossed out, so I pretended to swoon. But I wasn’t grossed out. I felt nothing. And I was ashamed to feel nothing.

Prior to that? I dreamt I was watching a TV special about rehabilitating serial killers.

Dark nights, my friends.


liz | 10:03 AM | SCHIZOPHRENIA, stigma

I Am a Threat to Your Library!

Apr 8 2009 | Comments 58

The Treatment Advocacy Center (TAC) never ceases to amaze. Joe sent me a link to a press release they put out, the sentence of which reads:

ARLINGTON, Va. – (Business Wire) People with untreated severe mental illnesses may pose a greater risk to the future of America’s public libraries than does the invention of the Internet, according to a new survey released in the March/April edition of American Libraries, the journal of the American Library Association.

I needn’t tell you who authored the study. That’s right: TAC. The stats TAC offers in the study are:

Other findings include:

  • 28 percent say they have witnessed someone with a psychiatric disorder assault a staff member;
  • 58 percent report more library patrons who appear to have serious psychiatric disorders now than when they first started working in the library;
  • 61 percent say library patrons with psychiatric disorders utilize a disproportionate amount of staff time; and,
  • 66 percent say they have needed to change library rules because of patrons with mental illnesses.

There are so many problems with these stats, it’s hard to know where to begin. First of all, there’s that word “appear.” Are library employees qualified to determine who has serious psychiatric disorders? I doubt it. I suspect they wouldn’t identify me as one of those people, but I’m guessing every disheveled person gets tarred with that brush, no matter the issue. And let’s not forget the classicism and racism that makes such observations inherently problematic. If a black guy in dirty clothes comes into a library and spends a lot of time on the web, is he going to be seen as the same as a white woman in clean clothes (like me)? Who’s more likely to be called “crazy,” despite whatever behaviors?

Even assuming that people with psych disorders do use the library — which I know is true, particularly when their situation coincides with poverty — why can’t they? So what if they have odd behaviors? Are they any less entitled to access the resources? People with disabilities have a right to be accommodated.

TAC’s ostensible point is that:

“Our nation’s libraries are turning into daytime shelters for people with severe mental illness who need to be in treatment. The fact that libraries remain a safe haven from violence and life on the streets for people with mental illness is a sad commentary. Doing so devalues human life and the importance of libraries in our communities.”

But the study isn’t about sympathizing with people with mental illness. It’s about making them look like freaks.

The librarians surveyed reported very serious problems in dealing with patrons with mental illness, including, “two librarians murdered by a mentally-ill patron in the early ’90s,” according the study. Others reported being punched, having chairs thrown, and stalking.

The librarians were frank in their comments about dealing with people with mental illness. Included were such statements as:

“Many, many library customers don’t come downtown to our central library because they are afraid of these customers…They perceived the library to be a dangerous place and another homeless shelter and it has really lessened our stature in the community and is disheartening to our staff.”

“Other patrons are often frightened by strange behavior…They tend to hold onto their children more tightly and leave more quickly than they might have planned.”

“A number of patrons have told us they will not be back because of unpleasant encounters they feel are unsafe.”

As Joe points out, where is StigmaBusters on this? Hey, NAMI, get some balls. This is unacceptable.

[This image is of Mudd Library at my alma mater, Oberlin College. It was the awesomest library I've ever lived in. Thank God they let me in.]


liz | 10:27 AM | stigma, violence