Stigma and Pride
May 13, 2008 by Kristina Chew, PhD
Filed under Health
Sunday’s New York Times had an article about “Mad Pride”: More people with “severe forms of mental illness such as schizophrenia and bipolar disorder” are now speaking out about “their demons”:
About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.
Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.
One of the persons interviewed for the article is a law professor and associate dean at the University of Southern California, Elyn Saks, who has schizophrenia; she did not reveal her diagnosis until after she had received tenure.
Autism as I understand it, as I know it from my son Charlie, and as I write about it here, is not a mental illness. It’s a neurological disorder. Nonetheless, there’s been a side-discussion going on about autism, trauma, and neurosis in an older post I did on Floortime therapy, in which autism is referred to as psychological and even psychogenic. If there’s one theory about autism causation that today’s parents universally reject, it is that they themselves “caused” a child to become autistic due to the parents being emotionally withdrawn, as stated in the infamous “refrigerator mother theory.”
One could argue that some of the past and present stigma cast upon autistic individuals is in part because of misconceptions not only of autism, but of mental illness. More about “Mad Pride” in the New York Times:
Members of the mad pride movement do not always agree on their aims and intentions. For some, the objective is to continue the destigmatization of mental illness. A vocal, controversial wing rejects the need to treat mental afflictions with psychotropic drugs and seeks alternatives to the shifting, often inconsistent care offered by the medical establishment. Many members of the movement say they are publicly discussing their own struggles to help those with similar conditions and to inform the general public.
“It used to be you were labeled with your diagnosis and that was it; you were marginalized,” said Molly Sprengelmeyer, an organizer for the Asheville Radical Mental Health Collective, a mad pride group in North Carolina. “If people found out, it was a death sentence, professionally and socially.”
She added, “We are hoping to change all that by talking.”
The confessional mood encouraged by memoirs and blogs, as well as the self-help advocacy movement in mental health, have deepened the understanding of bipolar disorder and schizophrenia.
It’s the stigma attached to mental illness that rings true. There’s been more than a few people whom we’ve heard say things like “he’s nuts!” or “what’s wrong with that kid?” about Charlie. Certainly we strive to teach Charlie that home and the car are the safe places to do some things, but I also know that some seemingly “odd behaviors” that Charlie might do (like the curious and loud barking sound he’s been making of late) are how he communicates how he feels about being in some public situations. We try to teach him to talk and not be quite that loud, and we also hope seeing Charlie out and about might teach people that autism, too, is not a “death sentence.”
And as far as pride—I can never say enough about how proud I am of Charlie.
(But you probably already know that.)
There are a great many people who are extremely ignorant and quite proud of it. They are attempting to force the rest of us into their delusional world view. They are usually known as denialists, and come in all types.
Stigma and marginalization are the main methods they try to use to foist their world view on the rest of us.
What a world we live in. I believe that mental illness is still one of those things that are thought of as a pull yourself up by your bootstraps kind of thing; look at how reactive people get if there is a suggestion that their genetics *might* have something to do with it. Compare with the disappointment but sanguinity of knowing there is a predisposition to a physical ailment or syndrome. Place the problem in the brain and the paradigm shifts.
Mental illness or different behavior is a tough thing. I don’t have schizophrenia, but I have a family member who does, and she is defined by it in public reaction, the therapeutic circles she runs in and now, after so much social shaping, herself. Having known her for 30 years, that was not always the case. This is a woman who does the therapy, takes the meds (and has been through dozens of various drug trials), and just about everything that she was supposed to and still has overt schizophrenia. She has spent so much time working on being cured that there has been very little time for much else. At some point you gotta have some pride, because it beats feeling guilty as if something volitional was involved.
All disorders currently classified as “mental disorders” are actually neurological disorders. I can’t wait for the day that we stamp out this assumed dichotomy and accept that brain and body share physiology. If there’s anything I’ve learned from the people close to me who have “mental disorders,” it’s that your physiology is your physiology, whether it’s your brain or your heart or your peripheral nerves. When, O’ when, will we shake the dust of Freud from our feet?
I wanted to clarify about the reactions to genetics–that was meant primarily by those who are a familial role but not necessarily directly affected.
I have one last comment–a few years ago I became acquainted with a woman who was deeply and possibly clinically depressed; I thought that she should get to a professional stat, having some personal experience with depression, but quite a few others in our social circle advised her to “get off herself”, “get busy”, or “shopping cheers me up”; others simply disengaged. The result was that on top of everything else, she started expressing that she was just being “self-centered” and “letting this thing get the better of me”. She gunnysacked her depression, put on a cheerful facade, and attempted suicide shortly thereafter.
If it had been a heart condition would people have given a similar kind of feedback or reaction?
In my family’s experience, the most insidious aspect of psychotic mental illness is affected person’s absolute denial and lack of insight into the illness. Several years after the initial onset of simptoms, my husband still refuses to even entertain the possibility that he might be ill and that some of his experience is the result of that and not objective reality.
So, I am ready to applaud the members of “mad pride” movement. Accepting the fact of mental illness and going on living with it and fighting for acceptance is a huge, huge step.
I only wished the NY Times had put this article in the Health section, rather than Styles (beauty, fashion)!
More to the point:
The article really hit home with me. Both of my husband’s parents have mental illness and this was one reason that we were not able to live with them anymore. While my mother-in-law has a diagnosis—depression, severe anxiety, bipolar—-there is deep denial about the extent of it, about how long it has lasted, and about its effect on the family, especially her children. My father-in-law has no diagnosis, but there are, as they say, “issues,” one of them being “absolute denial” in the “affected person.”
I’ve my own “issues”—it was an interesting year, last year.
“All disorders currently classified as “mental disorders” are actually neurological disorders. I can’t wait for the day that we stamp out this assumed dichotomy and accept that brain and body share physiology. If there’s anything I’ve learned from the people close to me who have “mental disorders,” it’s that your physiology is your physiology, whether it’s your brain or your heart or your peripheral nerves. When, O’ when, will we shake the dust of Freud from our feet?”
Actually, we’re not looking at Freud here, or at least not originally. We’re looking a Descartes. And the mind-body distinction that seems to falsely hold is so prevalent in the field it’s somewhat astonishing. I still keep laughing that people want to define autism as a “whole-body” disorder instead of a neurological disorder because there can be effects on the body. As if neurology doesn’t effect the body.
“In my family’s experience, the most insidious aspect of psychotic mental illness is affected person’s absolute denial and lack of insight into the illness. Several years after the initial onset of symptoms, my husband still refuses to even entertain the possibility that he might be ill and that some of his experience is the result of that and not objective reality.
So, I am ready to applaud the members of ‘mad pride’ movement. Accepting the fact of mental illness and going on living with it and fighting for acceptance is a huge, huge step.”
It is such a prevalent issue. Even though I have no issues reframing neurological disabilities, often I find that people absolutely refuse to recognize certain aspects of who they are, and then become really upset when these aspects come to light. It’s so great that, even under such a heavy stigmatization like that of schizophrenia, people are still coming quite openly about that as part of their identities. Quite neat, really.
Cliff
Some people stigmatize other people even for trivial differences, such as skin color, hair length, political beliefs, sexual orientation, height and weight.
Unfortunately such people will use any perceived “weakness” as a mechanism for inflicting harm.
Just had a very good conversation with a student (senior psychology major) about how she got interested in psychology: She noted that there’s always something unseen and underlying behind why people do things, something not apparent on the surface.
I’m curious to know about Elyn Saks, the law professor. According to her webpage, she is training to be a psychoanalyst.
Cliff, agreed, although I’m a lot happier blaming Freud. Just makes me feel better. I suppose we could also do a bit of gunning for Jung, while we’re at it.
Hehe, not all a bad thing.
Cliff
Why not gun for Skinner or Lovaas and stay on topic?
I’m sorry, I didn’t realize AutismVox had Comment Police.
And one that had a very narrow, misconstrued view of “on topic”.
Cliff
I apologize. I failed to find any reference in removing any perceived stigma from the subject matter of these more current ASD professionals. Please provide any reference to the contrary, Thank you.
Alles ist gut; omnia bona; tout va bien. It’s not exactly “anything goes” here but digressions, Cartesian and otherwise, often get us into new places.
I’ve been rereading Freud. Am team-teaching a course on Psychology and Literature this summer.
Chuck, are there any ASD professionals in particular you’re referring to?
It’s not that people are “removing stigma from current professionals”. But we’re implying trends in autism that have been caused, indirectly, by certain individuals. Like Descrates, in a fashion I described.
Of Freud. Perhaps you hear of his psychoanalytic movement, Bruno Bettlehiem? Lovely guy. Particularly kind to mothers, and spoke of autistics as empowered individuals who had clear agency and, amazingly, a soul.
Yeah, there are reasons to be critical of the effects of Freud.
Cliff
Err… read that bit as “Perhaps you have heard of one of is psychoanalytic movement”. Forgive my typing today, where I have made some really weird gaffes (some of it has to do with an unfamiliar environment and keyboard, other is just final period distraction).
Cliff
If I may point out (”Freudian slip?”)–you typed Descrates—-looks like Descartes + Socrates to me.
Back to business.
Yeah, distractable libraries do not make for good typing. Wasn’t thinking particularly of Socrates, though, in a different context, I sure am now.
Cliff
“Chuck, are there any ASD professionals in particular you’re referring to?”
There were no major players at APA when I was undergrad (DSM-III era) addressing Stigma and ASD. If there are ANY major players now, that would be very surprising.
A mental Health Consumer Provider’s experience working on two Programs of Assertive Community Treatment
After an accident I was disabled for five years. During this time I received Social Security Disability Income and counseling. I joined a club house in Newton Massachusetts for vocational counseling. After volunteering there I got a temporary employment placement. I did janitorial work on two days each week for two hour shifts at some group homes. On one night each week I attended a vocational support group to discuss issues related to the job. After this I found a part time telemarketing job. This independent employment was a step in the right direction. I had an excellent college education and had difficulty getting hired. I thought this could be related to having been disabled. Employers are careful in hireling people and this can exclude people who can do the job but have been unemployed. I was grateful that a program was available in my community to help disabled people get jobs. Being excluded from the work force creates a unique poverty of the soul. I vowed that someday I would help disabled people with finding jobs.
A year and six months into my recovery I got a residential counselor job working with individuals called mentally retarded. I slept overnight three nights. This was an excellent situation for someone with depression. I got off public assistance and was self supporting, productive and responsible member of society. After you worked for a year at the agency you were eligible for tuition reimbursement. I took advantage of this and enrolled in the U Mass Boston’s Rehabilitation Counseling program.
After taking one course a semester for a few years I moved into a therapeutic community where I worked as a counselor with mental health clients. Working in a supportive environment as a counselor and learning about mental health counseling helped me grow as a person and nurture the growth of people I worked with. I worked in this position and studied rehabilitation counseling for five years. After I earned a Masters in Counseling I got certified as a rehabilitation counselor.
Then I took a job with a Program of Assertive Community Treatment (PACT) in central Massachusetts. I was able to advocate for clients and help them with a lot of problems. I liked the fact that we did outreach and helped clients where ever they were. This type of work brought me to homeless shelters, schools, work places, hospitals, jails and client’s homes. The psychiatrist and staff were supportive. Because the program was associated with a University teaching and learning were emphasized. I received good performance reviews over my four years of employment. I handled numerous crisis situations effectively. I helped clients to find jobs.
After four years I was offered a better paying position at another PACT. I had twelve years experience and not one complaint on my record. I moved near to Malden take a position as a Vocational Counselor with a PACT in Malden at Tri-City Mental Health Center (TCMHC). The company was merging with Eliot Community Mental Health (ECMH). This was because TCMHC had committed fraud in billing Medicaid and the director of rehabilitation stole from clients. I understood that the company was in transition. I was confident in my ability to help clients and I knew I had a good work ethic and thought that would be enough to succeed. No one new I had a disability when I took the job. I had the experience of being on an effectively operated PACT. This experience was needed because the program had problems.
After taking the job I saw that clients were not getting services they needed with housing and employment. Clients needed help. Staff would say that clients were to “symptomatic” to benefit from help with these important issues. Staff treated clients in a condescending manner. I raised my concerns about client treatment with Aaron Katz the new program director. A Katz did not have the required credentials or experience to manage the program. This program was designed to serve the most disabled and vulnerable mental health consumers in the area. The response I got was “mind your own place and business”. I could see his approach to management was to bully subordinates, use intimidation and push people around. For example he and another manager would co supervise a counselor while A Katz sat at a computer taking notes like it was a disposition. You never knew what was being written. I asked if I could take notes during a meeting but was told this was not allowed. I do not respond well to this approach by a manager.
In my first month of employment I was asked to take a client to get a toxicology screen. The test results could get the client in legal trouble. I thought that this task was a bad idea for our first meeting. I found out latter this client had been charged with attempted murder. I was not told about his background but just to take him to get tested. I refused to do this. This is just one example of a number of problems where clients and staff were put at odds because of poor management. (Reports to DMH never told what was going on.) In a PACT program clients are often under court order to get treatment and have the program manage their money. The only way to be sure clients are not coerced and staff is acting ethically is for there to be effective communication between all staff and management. However this was not possible at the ECHS PACT all communication was one way. Aaron Katz gave orders and expected staff to obey his orders without question. It was as if the clients weren’t people but animals to be feed anti-psychotic medications. A Katz the program director would say “I have to micromanage everything”. If a team meeting was going on counselors were expected to raise there hand and ask permission to go to the bathroom. We were in team meetings ten hours a week.
The work place became hostile. I think it was because other staff saw that I advocated for clients in meetings and management felt threatened. I got the “you aren’t fitting in talk” from the manager. Then I got a written warning that threatened termination. This was for late paper work. Some of the paper work was the program directors (A Katz) responsibility. I explained that I had dyslexia and I asked for some extra time to complete the paper works. I advocated for my self and asked for the accommodations that I am entitled to under the American’s with Disabilities Act. Other than this minor issue I had demonstrated leadership in important matters. I helped client’s find jobs and housing. I managed crisis situations. My request for more time to do paper work was denied by a Katz.
Then after a client in crisis did not get help from management in a timely manner a blame game started. I had brought the client in crisis to meet the manager. I got blamed because this client who needed to be hospitalized ended up driving in Malden. This happened after I warned the manager that he needed help. A staff person from the day program was in his car. He could have crashed his car into someone. But I was blamed for this management neglect. I filed two grievances with the SEUI union. Management ignored them. I developed health problems as a result of the stress I was under. The management created a hostile work place. I even got treatment for job related stress. I let A Katz and M Mathews a senior manager know I was being treated for job related stress. The work place got more hostile. I requested time off but this was denied. Even though I had a doctors note as evidence that I had job related stress and both vacation and personal time.
Basically I was thrown out like the trash. The reason was because I advocated for clients, workers rights and would not accept unethical behavior by management. ECHS management contested my unemployment claim. At hearings M Mathews and Aaron Katz committed perjury. After four hearings the Massachusetts Department of Employment and Training found I had an urgent and compelling reason for ending the job. I was paid unemployment compensation. ECHS management also refused to pay me for my last two weeks work. I went to small claims court and named Pam Burns the Human Resources Director in my complaint. I had an excellent case but the hearing officer was a Malden court clerk named Paul Burns. Without considering the facts I lost my case.
Because of all this I lost my health insurance and couldn’t continue treatment. Now, I can not get a good job because I do not have a reference from my last employer. My health problems have not been treated. I am applying for Social Security Disability. I found management’s main interest was in misleading the Massachusetts Department of Mental Health about how the PACT was operated. Ethical issues were not to be discussed. Dishonesty and hostility were the foundations of management’s practice. They treat counselors like dogs and laugh at the SEUI union.
Signed,
Dog Meat
“Yeah, distractable libraries do not make for good typing. Wasn’t thinking particularly of Socrates, though, in a different context, I sure am now.”
Cliff
——-
The motive of Freudian slips are never conscious. On a pre-conscious level they are superficial and similar to day’s residues in dreams. However, ultimately, under several layers of mutually-reinforcing determinants, they are infantile wish fulfillment.
“Descrates” reminds me of “desecrates through reverence.” Maybe that will give you a clue as to why you made the mistake.
Honestly, can a distracted kid make a typo without being analyzed? One of the issues with Freud is that it totally takes out simple computational motor errors out of the way. Both of the contexts of psychoanalysis and psycholinguistics overread that. I know you and I disagree about Freud, but I’ll say that, quite simply, I made a (honestly, quite funny) mistake, and attributing it to wish fulfillment would be well overreading.
Cliff
Theoretically it’s possible you made a purely mechanical error, but this has been studied by experts and laymen alike for over a hundred years; and it’s starting to look like there really are no accidents. I can’t read the whole book for you, but if you choose to get your toesies wet:
http://books.google.com/books?id=cNE7Ag2q0tgC&dq=psychopathology+of+everyday+life&pg=PP1&ots=Fli7erTROf&sig=9JDrzsSRbZvfk1eOSGEX095U-zM&hl=en&prev=http://www.google.com/search%3Fsourceid%3Dnavclient%26ie%3DUTF-8%26rlz%3D1T4HPIC_en___US239%26q%3Dpsychopathology%2Bof%2Beveryday%2Blife&sa=X&oi=print&ct=title&cad=one-book-with-thumbnail#PPR7,M1
Or you can buy the book. It’s still in worldwide publication in paperback.
http://www.amazon.com/s/ref=nb_ss_gw?url=search-alias%3Dstripbooks&field-keywords=psychopathology+of+everyday+life+freud&x=9&y=14
Incidentally; Freud pointed out that “distraction” is the thing that allows unconscious wishes to sneak past conscious censorship.
Hi Kristina:
You recently censored a post of mine which was meant to be conciliatory. It was totally benign. I can’t figure out why you did this. It involved a referral to a book that offered a method to determine whether or not memories of child abuse were real or fantasy. Why did you censor that post?
scs, I totally sympathize with you.
It can be a horrible experience to find out that the “stated goals” are not the real intentions.
Unfortunately all too common in the human experience.
@larry, are you referring to the above comment with the link to Freud? Comments with URLs to websites tend to go into the moderation queue. I’ll look for it; sorry about that.
@larry, are you referring to the above comment with the link to Freud? Comments with URLs to websites tend to go into the moderation queue. I’ll look for it; sorry about that.
——–
Hi Kristina:
I was referring to a reply to Kassiane on the Greenspan II thread. It too contained a URL. It was well over a month ago, but I just now noticed it never went through; so it’s long gone. I’ll try again.
Yours,
Larry