the dilemma of “responsible” mental health advocacy

The Tim Murphy Mental Health Reform Act (“TorreyCare” ???) has a lot of goodies in it.  It provides for funding of a bunch of ideas that have a lot of merit:  The excellence in mental health care act, mental health first aid, and reauthorization of funds for suicide prevention chief among them.  The operative question is at what cost.

There has always been a tension in mental health advocacy between the needs of providers and large organizations and the needs of consumers or persons with lived experience.  “Respectable” organizations tend to believe that what is good for mental health providers is good for mental health.  To an undeniable degree that is true.  The health of helpers is related to the degree of help they can provide.  But they are not the same.  The problem with the mental health system is not that the voice of mental health centers, large organizations or “professionals” is inadequately heard.  The problem is that my voice and yours is not heard.  “Professionals” may and hopefully will speak with me in advocating a position.  They most assuredly do not speak for me. 

Rep Murphy to have best chance of making his ambitious bill reality needs the support of “responsible” organizations, the big money, big ticket organizations whose collective efforts define so much of what the mental health system is about to support him. He may be successful anyway, but his chances skyrocket with “responsible” supporters.

So the question becomes price. What are you willing to give up to get what you want? I have seen pronouncements from several large organizations saying they would “work” with Rep Murphy to develop a “good bill”. There is absolutely nothing wrong with that. The real question is what is negotiable and what is not. And so much rides on that. I know I will be eager to hear the answer. I dont pretend to know, but I am sure listening.

Mine is a very small voice and in the scheme of things not very important. But it is the only voice I have so I do want to speak it. “Torreycare” regardless of how it is dressed up is not okay with me. It does not reflect my goals, my values, or my interests. It defines my rights as conveniences and anyone who advocates for me as a criminal. It is a huge step backward and I oppose it at the top of my lungs. My guess and it is only a guess because I dont know is that if “respectable” organizations sign on they will find they have done their standing with consumers grave damage. Everything that looks good or tastes good is not good and hope due caution and care is used before anyone decides to go forth.


6 thoughts on “the dilemma of “responsible” mental health advocacy”

  1. I just received an email from NAMI-IL yesterday, and apparently (no surprise here folks), they are in favor of the whole bill, lock, stock and barrel. They always manage to have a big voice, so we have to stick together and squawk even louder. Who’s with me on this one?

  2. NAMI is, perhaps, one of the single most dangerous “advocacy” groups for those of us labeled as mentally ill. Don’t get me wrong! During the mid-to late 1980’s, I had the great fortune of being asked by the State Director of NAMI Arkansas to start, develop, create, expand, etc. – a statewide support group for people labeled as mentally ill. By and large, the members of NAMI Arkansas were genuinely good people who were truly interested in hearing from those of us who had the “great fortune/mis-fortune” of getting a label smacked onto us by the psychiatric community. On the flip side of this was the constant, pandering rhetoric of “the decade of the brain”. You know, nothing that happened to their crazy relative was THEIR fault; it was the BRAIN’s fault! Honest-to-goodness, I became so weary of the constant need by NAMI members to dissolve themselves of any responsibility for their relative’s “condition”. It seemed so self-serving, selfish and a huge waste of time.

    I digress – my apologies. Here’s the thing. NAMI is going to support Murphy’s bill – Hook. Line. And. Sinker!! Those folks who genuinely – or disingenuously – have “our best interests at heart” – have historically taken GREAT liberties with our lives and our freedoms. They tend to see themselves as victims who are simply trying to do the right thing. And I certainly DO understand their need to take a break from their crazy family member! You know, we are not always the easiest folks to live with – day in and day out.

    Bottom line, though, is this: If certain NAMI members feel a need to take care of us (even though, at times, taking care of us is counterproductive for both parties), they will do anything and everything they can to make that situation comfortable and livable for themselves. I get this. What I DON’T get is this: Why on earth do they insist on playing the victim, the martyr, the tortured (but oh so-good/Christian) family member who (willingly?) sacrifices his/her very existence for the benefit of their nutty family member? If the situation is/has become toxic, tell your family member to find his/her own place to live. Do it with love. Do it with compassion. Do it with concern for the ongoing development and growth of your family member. But, by all means, DO IT.

    You think you are “helping” your family member by allowing them to live in your home and do some pretty awful (sometimes downright scary and potentially dangerous) things. You accept is as “your lot in life”. And, on and on the pathological cycle goes. We may be crazy, but we are not stupid. Setting and sticking to boundaries and expectations is GOOD for us! But – whatever you do – do NOT “force” us to “accept” so-called “treatments”, medications, therapies, programs, groups, etc. – whether they be in our communities or in a psychiatric facility. Because, you see folks, human nature is to REBEL and RESIST against that which is forced upon us! And no – it is NOT for our good. And, NO, we are not so messed up that we are not (at least some of the time) capable of figuring out what is GOOD for us. But so often, you don’t even ask us he simple questions. So often, you treat us as if we are nothing more than imbecilic, irresponsible children who have to be “tended to”. Of course, there ARE people like that in the world. However, I would argue that those folks are not “mentally ill”. I would suggest that they have been allowed to live their lives free of consequences because someone (ahem, you “giving” parents) out there constantly “rescued” us – with the tragic outcome of teaching us that we don’t have to act responsibly because you are going to bail us out. The more you expect of us (within moral and reasonable limits) the more we will do (for ourselves and for you). The less you expect of us, the less you will get. Set us free and watch us: 1) Succeed; 2) Fail; 3) Get stuck; 4) Soar. But, always, always, let us GO so that we can make our mistakes and – hopefully – learn from them. Flip side: if our lives become little more than tolerating situations/medications/”treatments’ which have been forced upon us, you will ensure that we never become all we can be – AND – we will resent you and all the people responsible for making this a reality in our lives.

  3. In a mental health bill I would like too see parratey between funding for mental health and physical health. And more funding for cumummity supports . Like housing in safe naiborhoods of our choosing , acsses to quilaty health care, and oppertundes to build on my strangths , including good job opperundes with living wages.
    James Maynard CPS

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