Tag Archives: stigma

mental health debate: the stigma of stigma

the following is a transcript of an email conversation with harold mayo, a mental health advocate from florida. harold is critical of talk of stigma in relationship with mental illness. this criticism arose in connection with the press release for mental health camp.  in the following you will see that in the exchange, i directed most of my efforts towards understanding harold’s point of view. i don’t agree with all ore even many of his points but will leave that to another post. what’s important here, i think, is to entertain the dialogue (even if it seems a bit like a debate right now). i am very interested in hearing what you have to say.

harold: to prolong the concept of “stigma,” CAMH is employing it as a marketing tool (MHA here in the US, other groups elsewhere.) it is a powerful tool, stereotyping. it has worked against many people. jews, women who survive rape, in my country people of african origin, and mental illnesses. why we purchase this “product” is difficult to assess. why we promote it is even more difficult to assess.

isabella: in order to ascertain whether i understand you correctly, when you say product, would it be almost like a brand? in that vein, we could say that CMHA (that’s who we’re talking about here, not CAMH, which is another organization) is not “selling” say, heinz ketchup, it’s selling the idea/concept of stigma. correct?

yes i believe CAMH is using negative marketing as a tool to get themselves attention, reinforcing negatives instead of providing us with positives, as “black is beautiful” did. “CAMH can care for you so long as we can keep you a position to be cared for,” is the model.

yes “stigma” is being marketed as a brand. name me another medical issue that employs this marketing tool. michael j. fox does not employ it. i am aware of no medical condition that does, outside this one it has no marketing value. where claims of “stigma” against women continues to be a marketing practice, where women are diminished and where men are in total control, it continues its effectiveness. where not, it does not.

the women’s movement here refuted the assignation “stigma” to women who survived rape, they forced us to look at realities it hid, the violence, the crime, the criminal. they did not ask us to reduce or diminish it, they forced us to end our marketing practice against them, to stop. we did. it is a model worth emulating. mental health must do the same. the model has been established, it is being ignored.

isabella: why would CMHA want to prolong/sell the idea of stigma? (to keep itself in the business, perhaps, just like some social service agencies are referred to as “poverty pimps”?)

yes. examining the structure of cults, no CAMH is not strictly a “cult,” one easily observes this practice: “you are flawed, i do not like that you are seen as flawed, you ought not be seen as flawed, i will protect you.” constantly reinforcing the “flaw,” while claiming to oppose it, is a pandora’s box syndrome: i let loose the negative terms, no one can recover them and put them back in the box.

harold: are you perhaps also saying that by keeping up the talk about stigma, the act of stereotyping is perpetuated? (“those” people with mental illnesses, for example?)

yes. “those people” is the ultimate goal of any prejudice. we, “them.” how many ways we express “those people” is what i examine in the media every day.”the” mentally ill, that generic, is one. it is the most useful to any marketing campaign, it establishes the logo. “the” jews did, “the” blacks did. “the” mentally ill does. it is the house brand, the one with the generic label on the can.

isabella: i would say that mental illness is still not something that people enjoy talking about, to put it mildly.

do not interpret “people” to mean all people. i cannot dispute your use of the modifier “enjoy.” we do not “enjoy” speaking about many illnesses. nonetheless we do. i do not know your age, but i recall very clearly not talking about breast cancer. my head says it was not the cancer that was the issue, but the mention of “breast.” now we speak about it, without hesitation. and we have made progress in addressing it because of our speech. and “many” of us, “some” is a better descriptor, enjoy speaking about it, if only to assure people it is a topic one needs to discuss. as a mental health editor, i edited a great many people talking about it (mostly talking poorly.) as a retiree, i address many instances of people talking about mental illnesses. i address them in education, government, and the media.

isabella: can you explain more why it (assigning a “stigma”) is an affront?

ask the jews who survived it in nazi europe. ask any african american in the us, south africa. i generally speak very directly, please do not be offended by: do you realize how naive a question yours is? that is the power of well marketed social contracts, it preserves naiveté, while doing its harm. how many women did i insult with my jokes about rape, how many african americans did i insult through my inactions? how many women? how many people in high places dealing with a person a mental illness will not come forward because of the marketing? i hid for about three years after my first institutionalization, and then realized that was what was “expected” of me. from that day i became a vocal advocate.

i appreciate many very successful people are still in hiding because of the marketing, and the number of people purchasing that product. they skew public perception by hiding. as it is an affront to any woman who has survived the violence of sexual assault to argue that she is “marked,” it is an affront to suggest that i am.

harold: “according to CAMH” rings soundly my ears alongside “according to bigots” stigma surrounds jews, “according to,” here one must now say, “some men,” stigma surrounds rape… this “according to” is a red flag i note wherever it occurs, and from whomever, university, government, private and public voices.

isabella: i don’t understand what you’re saying there. it vaguely sounds to me like you’re implying that we’re talking about authority wrongly used, but – well, that’s just a shot in the dark. can you tell me more?

harold: yes, it is authority wrongly used. “black is beautiful” is rightly used,” ” i am woman hear me roar” is authority rightly used, and note the “roar,” simply speaking was not enough. so long as the focus of any group is negative, it is authority wrongly used. “impart knowledge positively ” is authority rightly used.

harold: we [people with mental illness] are as accepted in the community as any other people.

isabella: that is not my experience. just a little example: most of the time, when i say that i cannot do a certain task or that i need to do things differently because of my at times fragile mental health, i don’t meet what i would consider “normal” reactions such as, “oh, right” or “interesting, tell me more”, etc. i usually meet stony silence.

harold: that is your experience, it is anecdotal and certainly (sometimes) true for you, it is not “we,” do not expand your experience to that of everyone. that is CAMH’s marketing tool, “the negative is the only reality.” it is but one reality. it is the promoted reality.

when the marketing changes, your response and the response to you will. (i am sure it has.) so, market yourself better. you are a product, market yourself. you are doing it very well in your letter.

here is an example from my life: i wanted to learn computer skills, went to of the library and asked for help. within seconds i recognized how limited my abilities were and i began crying and hurriedly left. slowly i picked up some skills, but working in public brings out my weaknesses. a few months ago i returned and failed again. i went to my wife, a librarian there, and told her the librarian was not helping me. she said, “tell her what you need, she cannot help you until you do. she cannot offer you an accommodation if you do not describe it.” i then asked a librarian to sign me in on a computer, because i was afraid i could not follow the steps the library has in place. she did. i asked her to give me a computer isolated from those in use, she did. market your needs, they are yours.

harold: illness does not discriminate as words do,

isabella: i don’ t understand.

harold: illnesses strike all people, they do not select among people by imposed labels or prejudices. that is why we are as likely successful individuals as the “product” CAMH markets with their language. language is the repository of a society’s prejudices, recognized it can be stopped. marketing is often so thorough it is not recognized. marketing is often so insistent, in law, education, government, social intercourse, media, it cannot be overcome, ergo: “we shall overcome.”

harold: while the broad stereotype entertains, it does not inform.

isabella: i guess i don’t understand the connection between talking about what we perceive as the real problem of stigma or discrimination (when i say “we”, i should disclose that i am on the board of the CMHA vancouver/burnaby branch) on the one hand and stereotype on the other

what you perceive as the “real” problem does not make it the real problem. (were blacks here “slaves” or were they people held by us in slavery?)

you have been successfully “marketed” about what the problem is: “it is you, your illness.” it is not you, it is “them,” they who are doing the marketing. “they” are not the actual problem, the “marketing” “they” have internalized is. when the “marketing” of women changed, the response to the marketing allowed for change. when the “marketing” of CAMH changes, it will allow for change, too.

harold: we do not encourage those changes with negations, we encourage them with positive act, word and thought.

isabella: oh, that sounds interesting! tell me more! what’s a better way of doing this?

harold: “black is beautiful.” present positively. remove all negative language, adhere to the practice of positive representation. advocacy for represents issues positively, advocacy against represents them negatively. assess each and every word, sentence, phrase for its presented view. if it is negative you are defeating your claimed cause, you are allying with those against you.

isabella: are you saying that agencies like CMHA are intending to harm people with mental illness?

harold: i am, resoundingly.

as i intended to harm women, as i intended to harm african americans. responding to a “truth” i wholly believed, i intended harm. people on the receiving end of that harm were harmed.

i will leave you with these anecdotes about one of the founders of this nation, thomas jefferson:

1. he believed wholly that his grandchildren should read, and read with them every evening, that they did, a noble goal.
2. he believed wholly that the people, children and grandchildren he held in slavery should not, and proscribed them from learning, a now ignoble goal.
3. he believed wholly that men should receive a university education and founded one, a noble goal.
4. and he believed wholly that women should not, a now ignoble goal.

CAMH has many ignoble goals. like jefferson’s, they are intentional. in jefferson’s time there were few here who marketed goals contrary to his. but they existed. there were many in other countries who marketed goals contrary to his, who had no such ignoble intentions, for they were never marketed there.

communication being instant today, there is no longer excuse for ignoble goals.

your turn now, dear readers.  what do you think?

speaker line-up for mental health camp

yay! we now have the speakers list and topics for mental health camp, the conference about the intersection between social media and mental health.  more information on the topics will trickle in by the end of june.  if you want to sign up to come to this conference, go to our eventbrite page.  there will also be a busy twitter stream – watch out for more information about that!

if you wonder what “mental moose” is – they are opportunities for people to propose sessions the morning of the conference. the sessions will be voted on by participants, and the proposals with the most votes will be slotted into the available times. they are called “mental moose” in nostalgic memory of northern voice’s moosecamp.

here is the line-up:

9-9:30 keynote

9:35-10:20
room 1
escape from bummer island – imagining a mental health adventure game
by “depression 2.0”

9:35-10:20
room 2
arts based advocacy: sound therapy radio
by jay peachy

9:35-10:20
room 3
mental moose

10:15-11:00
room 1
ripping the scabs off through writing
by steffani cameron

10:15-11:00
room 2
digital outing / mad pride
by steven schwartz

10:15-11:00
room 3
getting by with a little help from our friends
by henry jue

11-11:20 break

11:25-12:10
room 1
mhsm chat – a virtual session about the weekly mental health chat on twitter
by amy kiel

11:25-12:10
room 2
how covenant house’s blog “on the house” helps break the silence around mental health issues
by michelle clausius

11:25-12:10
room 3
mental moose

12:15-1:40 lunch

1:45-2:30
room 1
ADHD and stigma
by pete quily

1:45-2:30
room 2
panel: being ‘out’ about various forms of mental illness such as bipolar disorder, eating disorders, ADD, and post-partum depression
by terra, steve, steff and catherine

1:45-2:30
room 3
mental moose

2:35-3:20
room 1
who gets to talk about mental health? when, where, why, how?
by isabella mori

2:35-3:20
room 2
mental moose

2:35-3:20
room 3
mental moose

3:50-4:25
room 1
the power of words and the power of bikes – a journalist goes on a bicycle tour to raise awareness of mental health
by michael schratter

3:50-4:25
room 2
mental moose

3:50-4:25
room 2
mental moose

4:30-5:00 closing statements

… and when and why is it ok to talk about mental health?

still thinking out loud

when and why do people get to talk about mental health?

there seem to be certain circumstances that make it more acceptable or easy to talk about mental health. as i am writing this i am telling myself that i need to be careful not to sound too cranky. “the curmudgeonly old advocate” is not a role that i am very well suited for. but it’s tempting, people, it’s tempting …

the truth is, there seems to be an unconscious fear of contagion. “if i get too close to you, will i catch your depression/anxiety/schizophrenia?” in a very, very roundabout way, it’s understandable where this comes from. we are sensitive to others’ emotion. harvard researchers, for example, found that happiness can be contagious (thanks for the reminder, aaron). i’ll be looking up research on “contagiousness” of mental illness as well.

however, some, perhaps much, of this fear is irrational. you don’t get the cooties from hanging out with someone with anxiety or PTSD. my (as yet unresearched) theory is that the irrational fear stems from old, instinctual fears that arose during times when humanity did not have the science to detect that the majority of diseases arise from causes such as bacteria, malnutrition, unsanitary practices or chemical imbalances.

all this is to say that when there is this fear of contagion, you talk about mental illness at your own risk. this fear seems to be strongest in the presence of ignorance. you know the silence that sits in a room like a rock when someone has the guts to say something like, “i wasn’t here last week because my meds got adjusted and i had to go to the hospital for a few days”? this thick, heavy, dense silence typically comes from fear and ignorance. fear and ignorance that OCD is contagious, but also lack of knowledge of what to say. we, the ones who know about mental illness first-hand, aren’t the only ones who don’t know how to talk about it. those who don’t know have even less of a clue.

so when is it a good time to talk about mental illness? since fear seems to be the problem here, the answer may just be, “when it’s safe.” that means situations like

  • when you’re in the presence of others with mental health issues (which is one of the major benefits of mental health camp)
  • when mental illness is far away, when others have it (e.g. when psychiatrists talk amongst each other; that is, psychiatrists who either don’t have a diagnosis themselves or if they have it, they’re secretive quiet about it)
  • to a lesser degree, when there is a “good reason” to have a mental health issue

yup, we’re coming back to the ignorance (and also to the cranky curmudgeon, apparently i can’t escape that role right now) because, you see, mental illness is apparently the kind of thing you only have a right to have (just for a short while, of course) if you have a “good reason”. a bit of postpartum depression is ok, about 3.5 weeks of depression caused by grief is ok, and if you’ve been raped or spent months in a crazy war, you’re also allowed to go off the rails for a little while. maybe.

someone i know is dealing with the acute, deep end of bipolar disorder right now. his family is pissed off; what is he doing going to the hospital when there are so many important things to do right now? and hasn’t he been to the hospital before and he still gets those silly crying jags, so clearly it doesn’t work? what a nuisance! mental health issues, like many other invisible illnesses, don’t seem to really exist for a lot of people, they are often treated like annoying idiosyncrasies.

boy, do i ever sound negative. let’s end with something a bit more uplifting. let’s think of a few more circumstances (the “why”) when it is at least somewhat safe to talk about mental health issues:

  • when the topic is to erase stigma
  • in art – literature, music, visual art, dance
  • in research

any more ideas?

psychologists, mental illness and stigma

today please visit over at brainblogger, where i talk about research on how some psychologists view people with mental health issues, especially those with schizophrenia and borderline personality disorder.  interesting points that are being discussed in the comments are the place of diagnosis and the importance, or limits of, of objectivity.

call for speakers for mental health camp

is there something you’ve always wanted to say about mental health?  here’s your chance – the call for speakers for MentalHealthCamp 2010.

we are looking for session leaders who speak from personal or professional experience with mental health or mental illness.

we will have 9 slots for prearranged speakers (e.g. approved by the selection committee), and will keep 6 slots open for “mental moose” – a continuation of the unconference tradition of moosecamp at northern voice.  during mental moose, participants who are interested in leading a session can pitch them on saturday morning with a quick 30-second talk.  everyone will then vote on which sessions will be presented, and the winning sessions will be scheduled.

also, we would like to experiment with having one or two virtual sessions.  do you live in new zealand and would like to present?  are you unable to leave your children and your dogs alone in rural quebec but have an important story to share?  if you have the technical know-how, let’s talk about using technology to bring you right into our conference here in vancouver.

go to the MentalHealthCamp site for more information.

mental health camp news

a few updates on MentalHealthCamp, the second vancouver conference on the intersection between social media and mental health, to be held on july 10.

we have a motto! it is

breaking our silence. setting us free.

also, there will be a mental health camp in toronto – isn’t that cool?  it’s on may 28.  raul and i are really stoked that this is moving beyond vancouver.

then there is a video of how the whole MentalHealthCamp idea started.

also on the MentalHealthCamp blog is a reply to an interesting article on the topic of “normal“, which had started with a post on the same topic at PsychCentral.

rising up to end stigma

as you know, i am a proud member of the canadian mental health association. i am even prouder to announce that a participant advisory committee, that is, individuals who are using the services of the CMHA vancouver/burnaby branch, is hosting an event for people living with mental illness and those affected by it to talk about ways to fight the stigma and discrimination around mental illness. if you’re like me and get excited about grassroots initiatives, please come and visit! here is the full information

rising up to end stigma

please join us at our 2009 participants forum
tuesday november 3, 2009

this is an opportunity for individuals living with mental illness, family members and professionals
to engage in dialogue and share ideas about how we can each be involved in fighting the stigma and
discrimination associated with mental illness.

what:

a 2-hour forum with speakers and plenty of opportunity for participant feedback and idea sharing.

with complimentary snacks and beverages

when:
tuesday, november 3, 2009 – 7:00 pm – 9:00 pm

where:
muti-media room
roundhouse community centre, vancouver bc
right off the new canada sky train line

featuring:
wayne cho who from may 2008 to june 2009 ran across canada to raise awareness of anxiety and depression.

andrew kellett fraser health peer mental health advocate

hosted by the CMHA VB participant’s advisory committee

please RSVP by november 2, 2009

pac.vb@cmha.bc.ca
or
604-682-3269 ext. 8479

mental illness awareness week 2009

today marks the end of mental illness awareness week. here are some bloggers who wrote about it, and a poem

and here’s my contribution, a poem i wrote about 15, 16 years ago. you’ll be happy to hear that the suitcase has been emptied.

i’ve been carrying around with me
for all these years
a hidden suitcase of despair

once in a while
i go and open it
inspect it
gleefully
under the covers of my
sheltering bed

i am delighted at its contents:
colourful puppets and leftover trinkets
spill out
and one or two caterpillars, brillant in the half shade
of what little light pierces
the soft, warm clouds of my duvet

then, when i hear footsteps
i close it
camouflage it
so that no-one
can steal
not even with a glimpse
my precious suitcase
brimming with exquisite anguish