Politics of the "Consumer/Survivor" Movement

This post is not going to be very popular among the so-called "progressive" folks that get involved with or support consumer/survivor organizations, not only dealing with mental health, but many other types of "consumer" based movements as well. I have no trouble with these organizations, but would appreciate their work more if there was better leadership and a bigger push that would benefit the whole, as opposed to the few.

In consumer-type movements, there is a void of leadership. Even when there are "leaders", the leaders are not the type to get it done or cause it to get done. They are more of the "charismatic" and self-important types that generate unearned credentials and act as though they are the only ones that are tapped into their communities. The unfortunate reason for this is that they can. Not enough "consumers" stand up to their "leaders" and call for them to account. Whenever they do, they are often turfed from whatever organization it is they are a member of. I know about this. I am aware of numerous situations where people have been very hurt by these actions. To me, in my work as a legal representative, at least I try to follow the motto "do no harm" and then the next, "listen to the client". Even if I worked with a client similar to the one before me in the past, I need to know about this one because to me, everybody is different and needs to be treated like an individual and respected for it.

Twenty or more years has passed since the dawning of the mental health consumer movement in Ontario and from the beginning of its time until today, I have not seen a single change in the following: (a) the unemployment rate among consumer/survivors in general; (b) the percentage of ODSP recipients that have as their primary disability, mental health problems (e.g. this has in fact gone up from 27% of all new ODSP recipients in 1988 to 36% today); (c) the number of mental health consumers being referred to and stuck in low-wage employment; and (d) the number of dollars spent on dealing with mental health issues per capita.

I remember in the late 1980's and the early 1990's, certain mental health consumer leaders would cite the statistic of over 85% of people with mental health problems were unemployed. Please note we are referring to serious mental health problems, not the everyday anxiety or depression that many "healthy" people feel. During recent Senate Committee Hearings, which wrapped up in 2005, these same people reported an 85% - 90% rate of unemployment among this same group. Through this longitudinal admission, the leaders of this movement are admitting they failed their people. To me, this calls for new leadership. No more of the same old, same old.

To me, poverty and unemployment are the two MAJOR issues impacting on people with mental health disabilities. If leadership from this population is unable to effect improvements, the times should be a' changing. My views are well known by many of the "leaders", but all I get is the brush-off. The fact of the matter is that as long as they have their positions and their well-paid jobs, they are "all right Jack". People with mental health problems want to work just as much as other people. Low OW and ODSP rates in fact are making people among this group and other disability groups much more desperate to find employment to top up their income so they can survive. Some are unable to and are resigned by this current government administration to live in poverty forever. For example, one case I am aware of tried working and has held 26 jobs over the past two years in a lame attempt to bring himself out of poverty. No doubt this desperate situation was not great for his mental health.

There are others that I am aware of that come from higher education and want jobs that exceed the typical low-paid entry level positions that consumers are usually referred to: food, filth, filing, fetching and flowers. I'm not saying people shouldn't work in these fields, but if they do - it should be a self-chosen career goal, not something that is imposed on them, or by its mere dominance in terms of being the only job opportunities offered. Those offering jobs in so-called "consumer-run businesses" aren't much better at alleviating this stereotype. While the leaders are the ones that hog the better-paid management positions, they only have the lower-paid part-time jobs in the five f's as earlier referred to offer others. The progressive community is silent on these issues. When you try to raise it with somebody, they say, "That's what these people want to do!". My response to that is: How can anybody be sure? Has each individual been truly consulted as to what their career aspirations are? I heard from hundreds of people who are not crazy about going for the low-paid five f's.

Further, the very idea that somebody received their training and work experience in a "consumer business" does not allow them the choice to NOT disclose to their next employer their status as a consumer/survivor at whatever point they may wish to move on. The names of the businesses are sometimes dead give-aways: Crazy Cooks, Raging Spoon. Or even if they don't have names like that, employers in these communities are generally aware that the business from which the candidate is leaving is 100% consumer-run. These businesses have an unusual amount of press coverage advertising to the world who they are and who works there, an unreasonable amount of government subsidy and generally low expectations of themselves when it comes to actually competing with similar businesses in their respective marketplace. This does not bode well for a person who may be seeking a supervisory or management position at new company - even if that person has gained the right training and experience to do that work in the "consumer business".

Others may not offer consumer businesses, but provide exclusive training opportunities for their "members" or "consumers" to pursue. The clubhouse movement is great for this. The clubhouse is set up on specific work units, which give its "members" an opportunity to learn the skills to partake in a work-ordered day. Again, the work units are usually based on the five f's: food, filth, filing, fetching and flowers. While there may be some advanced clubhouses I am not aware of that may offer more, the ones that I do know don't stray far from the five f's. When I raise this with the staff - many of whom are not necessarily from the dinosaur era in understanding the impact of stigma on employment opportunities - they deny this is job training or intended to route people in these specific directions. However, for those clubhouses that do offer off-site employment opportunities, the jobs are not much different than what was offered in the clubhouse environment.

A third example is a specific one that is available in my community and a few other communities across Canada. That is the BUILT Network. While I have never worked there or participated in its programs, I know people who have, either locally or via the Internet. Again, this is another one of those programs that thrive on placing people into low-wage, entry-level jobs, regardless of the person's education or aspirations. The people who run the BUILT Network locally seem nice enough and probably motivated by solely good intentions, as are likely the people who run its other offices across the country. However, based on the training given and career directions offered post-program, the average wage is $8 - $10 an hour. A few make a bit more, but in general - one is not going to get into the door of a high paying career using BUILT Network as a stepping stone. One thing I did consider when I first learned of this program is that it is obvious that program staff and its leaders are making considerably much more than the average wage of its participants. I have no doubt many of them are educated, but then again - so are many "consumers" that come to them for help.

I have no idea of the success rates of these programs, because basically there is really no way an outsider can ascertain if a program is successful or not. I have seen programs across Ontario that claim a placement rate above 90%, but there are no actual empirical studies to back these figures. I suppose if I run these programs, I would know more accurately how successful we actually are and may find ways to present the statistics to make it look like we are doing even better than we are, but that's not the point of this article.

This article is to state there is no real leadership among this particular movement. Yes, perhaps "leadership" can be defined in different ways by different people, but when I envision "leadership" - I think of someone who is able to make an impact, effect change and support and/or advocate for a diversity of opinion and strengths. I already shown that nothing changed with respect to the unemployment and poverty among consumer/survivors, despite valiant attempts by its "leaders" to fix this. So there's been no impact or effective change in these areas. What about other areas?

I want to be gentle on this next point because I am not trying to attack people; however, many consumer "leaders" have adopted what more conservative folks may deem to be a "politically correct" paradigm. To me, people are free to believe what they want - but when they purportedly represent a larger group of people than themselves and their own personal networks, it is time to throw that paradigm out the window and actually LISTEN. I have attended various conferences in the past where consumer "leaders" were featured as presenters. I did this as part of my own work as the executive director of a mental health agency - an agency that consulted broadly with both its members and non-members on a variety of issues. I simply let them talk and me listen. However, when I attended these workshops, I noted particularly offensive comments made by many of these "leaders" about: (a) educated people, many of whom are also consumers themselves; (b) conservative people, which also includes a significant swath of the consumer population; (c) traditional lifestyles (e.g. consumers who choose to become married, consumers who are heterosexual and traditional in their orientation, consumers who seek employment in a traditional business setting); and (d) consumers who do not believe the mantra that it is only possible for men to be violent against women and not the other way around.

I personally have no problems with people whose political views differ from my own, because we need diversity and a variety of ideas in this world. In fact, many of my own friends are rabidly "left wing" in their perspectives and they enjoy my company because there are *some* issues we may agree on, such as the lack of a social safety net and the increasingly pervasive level of poverty among people in one of the richest countries in the world. I also have no problems with people who live non-traditional lifestyles (e.g. in a same sex relationship, no children, living common law, etc.). However, we are not going to wipe out prejudice and stigma by creating further prejudices of our own - by marginalizing members of one's own community by pretending there is no such thing as a "consumer" who is also a professionally trained service provider, or pretending that "consumers" cannot possibly last and thrive in a traditional heterosexual marriage and have children, etc. I also felt marginalized when consumer "leaders" talked down to many of their consumer audience members like they were two years old and didn't understand anything. This is a bold assumption that one can only be a "true consumer" if one were uneducated, illiterate and ignorant of the ways of the world. Further and probably most important is the assumption that "consumers" only want to live with and/or work with other "consumers". By making these bold statements, my members who attended these conferences or who heard the tapes from the conference and/or read the minutes, were very turned off by what was said - and 90% of these folks were also people who were "consumers" and a few were family members of consumers!

I am not saying these consumer leaders are mean-spirited or intend to attack many of their own with their comments. They are likely not aware of the vast diversity among their own people. I am also saying these leaders are either not listening to their followers or being very selective as to who their followers are - only allowing people who are more like they are into their tents. Now, doesn't this sound very much like what many of these same people accuse the broader society of doing to mental health consumers? These leaders have their own refined sense of their experiences and by their comments, actually believe others share the same experiences in the same way and have come to terms with its meaning in exactly the same way. They also do not seem to think there is a need for a diversity of leadership or a periodic rotation where a set of leaders retire to be replaced with new leaders with a new vision that better reflects changing times and changing ideas. Unfortunately, the same people who were "speaking for" the so-called consumer/survivor movement in the 1980's are the same people who are doing this today ...

I actually researched the web, spoke to members over the Internet of various "consumer/survivor" organizations across the province. Fifteen to twenty years ago, our provincial government poured a pile of money into funding these organizations. I don't know why because none of these organizations appear to be doing much lobbying and advocacy for change in the quality of life for its highly impoverished membership; henceforth, many do not seem to seek the most qualified people to run their organizations. I personally would rather have none of these groups funded than allow sanctioned mediocrity to continue and proclaim to be representative of this part of the population. Remember the anti-education stance that many of the leaders have taken over the years, that being a consumer/survivor in itself was sufficient to be a manager, supervisor, program developer, or spokesperson. I directly confronted a few of the directors of these groups at a conference for the CMHA a few years back about why there was not much emphasis on employment and poverty reduction on their agendas. I was told that their members did not want to lose their disability pensions. Yet, at the same time, I hear only minimal squealing from this gallery about the push for changes in employment supports and other initiatives that may well lower this risk for this group. Consumer members of anti-poverty groups tend to be from other disability groups, than from the organized "mental health" movement.

Among the hundreds of consumer/survivors in my region, 99% of them do not and will not join a "consumer" group, but some have told me on numerous occasions that the only three people who seem to be speaking up for people who have been through the mental health system or who have mental health problems are me, the director of a progressive community development agency next door to my office and another individual who is active with the Canadian Mental Health Association. In my opinion, I don't have to have an organization to be considered credible on these issues. I think we rely too much on the word of people that head organizations about what their respective constituencies want and need. There is scant proof that leaders in these organizations are always aware of what their people want and need; it appears many of them tend to govern and speak up only on the basis of their personal opinions or on the opinions of those closest to them - but certainly not on behalf of those they are paid to work with. While there is nothing wrong with expressing one's own opinion, but when you are paid to work with a large group of people - it is the concerns of your people and not you that need to be heard.

Thoughts?