Personal experiences with our Paid Friends.
Warning, this may appear to be a "rant".
By Scot L. Wheat
It just might be....
Over the past two years I have tried to be a more active participant in my own treatment and rehabilitation. This has meant reaching out to my paid friends. There have been mixed results, mostly bad, as seen from my direct experiences. While I am stuck still reaching out to paid friends, there are others who are helping me survive the encounter with "the system" of paid friends. And to those who are friends that only incidentally get paid, I tip my hat. I hope you know the difference and do not take this personally.
Those of you who are the paid friends I am referring to. PLEASE TAKE THIS PERSONALLY. Please take offense, that is my intent for you. I am tired of being hurt by you, and somehow even more offended when you hurt other vulnerable people.
In public testimony before the various agencies that have huge impacts on our lives, I have stated that I will try to use my personal experiences in a responsible way by working with the system of paid friends. Principles before personalities. Having made that commitment, I have worked to be at the public and private meetings that concern us and do my best to represent consumer/ family members.
Today the Trust is meeting. I appeared before them a year ago in Wasilla at my own expense from Homer where I raised three main personal issues which I wished out loud that were stories about a friend instead of me. I then appeared in June in Fairbanks, and consciously chose not to go or appear yesterday in Anch. Maybe I could have found a sponsor, but I did not want to go this time. I "should" have gone, it would have completed a circle started a year ago. Why did I not go? The unresolved issues are sickening in themselves, and the system of paid friends has made it worse. See below:
I have heard from some in the mental health community that people like me are just "groupies". Hanging around the "real" power people (the paid ones only? or are they all elevated when they are on a board?), sucking up some reflected power/money. For me, at age 45, the image of "groupies" to me are sick sycophants attracted to rock and roll bands.
There also is a general sense it seems both with professionals and consumers that new faces should be seen; the old ones' are taking all the opportunities. For me at least, I have spent years learning the system, but I guess a new face that knows little will in years know something and can leave with that knowledge so some other new face can take over and learn until.....No wonder our paid friends run circles around us. They do "it" five days a week all day long.
Consumers have attacked me calling me a " power tripper", I and my family sure wish that power=money. I have been told to take more Atavan, that things are just fine. I have been mislabelled as a Paranoid Schizophrenic that only imagines there are problems-this by supposed clinicians. Thank God that those inept, un-professionals are not the only ones taking the money meant to help us. Thank God for other consumers that offer continued support to me and other consumers who risk by standing up to the paid friends that are only friends to themselves and their families!
Other allegations have been made I will not self injure by posting here, but I am out of the closet about in private. Please do not tell yourself now that it is just me. I have talked to people face to face from all over the country this year that have stood up and gotten attacked by self hating consumer/ family members and paid friends who want us sick. Sure this is a rant, what did I say at the top?
I am home today with my pet friends, my companions that un-conditionally accept me and never attack me. Nor do they lie to me while smiling. I met people in the states that had mental health pet companions. I think in many cases, I WOULD prefer the company of a pet companion to that of a paid friend. I guess that actually is a healthy attitude, and God knows, cheaper to the payers.
Yes I AM bitter, and angry. One thing I am NOT is depressed. I could crash as usual, but for TODAY I am just angry. I believe I have to be hurt first to have something to be angry about. I do not subscribe to the belief that difficult consumers are "inexplicably" angry.
Today there is no consequence to our paid friends if they screw up. There is no better business bureau file, no accountability. They will not be de-funded if they give crappy service, they will not lose their jobs. They won't even face a reduction in pay. Most of them are non-profit so can pay themselves whatever their board will go for. If they increase their Medicaid funding, they may even get a bonus, and an increase in base pay or fringe benefits. If they build buildings, edifices, infrastructure, their community may be impressed with the great job they are doing for the mentally ill. In some communities, they may have a pay roll that makes them the second largest employers in town. They are loved and respected by the chamber of commerce and others. They do not have to give customer service. All they have to do is please their funder, their "real" customer (that might read: the state of Alaska paid friends that they have more in common with then the pseudo customer, the consumer/family members). They do not seem to have to worry about there being more needy "customers"/raw material/product to work with or "serve". We seem to be a dime a dozen.
There is no place to lodge a meaningful complaint. Except the court system. Having been in court way too often, the last place I want to go is to a deliberately adversarial arena. I saw and see what the Lands Trust war did to the mental health community. We are still hurting from that court battle. That is not my idea of a starting point to effect change. Especially with people who are paid to be our friends. I want to continue to believe in the idea that there are some good guys out there. In fact, I have one hundred college credits devoted to BECOMING a paid friend! I would like to help not only in my own rehabilitation, but in others too, some day.
Please note: if I am returned to my usual level of dysfunction, that is RE-habilitated to my pre-crash condition (I mean the latest one, the really big one, starting in 1990), my life would still be pretty.... ##****!!#*.
Would any of you consumers be surprised that I do not want to go back to that level of "functioning"? I want hope of some quality of life. I do not want to be rehabilitated. ( At my best in the last thirty years, I have never been "high functioning".)Am I going to be punished for that attitude?
I do not want to be dependent on my paid friends for all my life needs either. I do not want to live in a dependent world or in a "normal" (at least based on thirty years of experience of MY "normality") world. I have heard it called "saneism", where a culture of NORPs (Normal, Ordinary, Responsible People) imposes their value system on another culture. Some people point to Eurocentrism, the white patriarchy etc. All I know is that I have no hope of competing in the "normal" world successfully for my life supports.
I have a thirty year history (age 45 now) of ups and downs that looks like a history of failure to most outside observers. For the record, "Schizo-affective Disorder, depressed type" seems to be the consensus of the testers and observers. It looks alot like "Bi-Polar Disorder" and some are saying I am manic now. For those of you who have lived through the ups and downs of Bi-Polar, you know why I may be a little angry that some people at least , seem to think I am "cured" or "recovered" and no longer need regular services or supports. I may in fact be at more risk now than at any time I am depressed.
Multiple marriages, multiple jailings, multiple hospitalizations voluntary and involuntary for mental and physical health reasons. Short lasting jobs and attempts at school. Horrible financial decisions. Wandering homeless but in some ways content. It is not a lifestyle choice for me so much as a coping mechanism. I called them "Walk Abouts" as I had heard that is what was done in Australia by a minority there.
I do not want to be rehabilitated to my previous level of disaster. I would rather be dead. I want hope that with proper treatment by professionals, and better yet, community supports, my life will not just be a waiting period for the next big Crash. I believe it is possible.
This year in July in Chicago at the NAMI convention, in August at the Consumer Clearinghouse Convention in Portland and in October in Houston at the Alternatives convention, I have met other mentally ill people who have found the right supports for them to have a life they seemed to LIKE to live. Some even acted like they had dignity and respect not only within themselves, but in their community too. This did not seem to come all that much at the hands of our/their very expensive paid friends. It may have been in co-operation with them, but often, the sense of dignity most of us have never had before came from other consumers. Peer run CSP/COP, peer run warm lines, peer case managers and so on. Successful people I could identify with. I am sorry, or maybe not: I can not identify with the NORPs, the NORMIES. I will never be like them. At age 45, I have accepted that I am different in many ways from the "sane" and do not want to be like them. I want to be like you other consumers; I am like you other consumers. I have no future emulating the NORPs. I will get sick trying to be like a NORMIE. As I said: I think some day I could be a paid friend to us. How many years away is that though? Note: I would hate to bet my life on my success at it though; and yet , some of my paid friends think I am ready to compete with them...for my life.
It is my personal belief that our very expensive paid friends goal "should" be to put themselves out of work. Tell me: how many of you consumer/family members see YOUR paid friends working to put themselves out of work?
Or do you see them figuring out different ways to do their job that benefits them? They mouth the words of "recovery" while undermining the efforts of consumers to take responsibility that may threaten the paid friends position of power=money to support their lifestyle/their families. And then there is the Department of Corrections, our main provider of mental health services in Alaska.
Do you believe that they would meet for hours if they were volunteers? Do you think they would accept the status quo if they only got paid if they actually produced something?
Granted, my life has not all been bad. For example, my daughter that I just visited last week is reason enough (for today) to live.
However, this idea that pills and compliance with some VAGUE hopeless plan of our paid friends is going to cure me in itself seems to be making me sick. How about you? Thanks for reading this far, if you made it. This was advertised as a "rant", and I trust you know what that means. If you did not deduce it, the future holds less public activity where I can be made a target.OOuuuuh, is he paranoid; like anyone would take the time to hurt him!
Nothing personal, it is just our paid business to jerk you around...