Either/or… How advocates get marginalized 

Part of the battle in mental health advocacy revolves around one simple question.  Who really wants to help?   It is a substantial question and what legislators believe about the answer has a lot to do with who they are likely to listen to. 

Part of the genius of Tim Murphy was his attempt to own that question.   If you listened to him he was the person that wanted to help and anyone who disagreed with him was pursuing some kind of personal agenda and turning their back on people who really needed help.   No legislator for either party is going to vote against helping people with mental illness.  Witness the final vote on the Murphy Bill.   

It was never really a contest because Murphy controlled the language.  It was either/or.   Either you are for helping those with mental illness or you are not.  A lot of the bill was blunted by the Democrats but essentially it was the same deal.   Murphy controlled the language.   He controlled the outcome. 

The battle continues in social media.  There are an endless array of groups and forums that have sprung up with most being very passionate and taking one side or the other of the either/or divide. 

You have some groups that are passionately either you are for human rights or you are not.   They find little good and sometimes have very little interest in anything that smacks of mental health reform.   Many find the whole mental health process as inherently offensive.  Many of them can explain very vividly and clearly how their experience in the system hurt them and they don’t think anyone else should be hurt.   Not always,  but sometimes these forums or groups dismiss those with more moderate views as deluded or “coopted”  by the system. 

You have some groups that define the issue as either you are for helping those with severe (this is kind of a code word indicating that normal concerns with human rights do not apply) mental illnesses or not.   They often dismiss talk about rights etc. as irrelevant or missing the point.   They also have an experience of being hurt by the system.   In their case most often it is a family member or friend whose life was damaged or destroyed and who in their eyes got little or no help.   They are also sometimes very intolerant and angry towards anyone who expresses even a little bit of a more moderate position.   They regard them as foolish and unrealistic and as people who are trying to ignore the very real pain of their experience. 

Sometimes forums will have both groups in them and those groups are normally just war.   Positions harden it seems for the most part.   My experience is that they normally have a lot of bullying and intimidation in them.   In the end they become mainly about preaching to their end of the choir,  trying to be louder than the other side and trying to hold the line against those that would dispute their possession of the “truth.” 

A lot of people see it as a war.   And they are determined not to lose and both sides spend more time preaching to those that already agreed with them than anything else.   To many it seems an endless battle going no where. 

As things stand right now I think in the end the Murphy people are likely to “win”  if by win you mean those that gain legislative advantage.  There are,  it looks like,  more of them,  they are better organized and have more money.   But the crucial variable is none of that.   They have defined the battle as either/or and themselves as being the people who really care.   And like I said before no legislators are voting against helping the “mentally ill.” 

I think the battle is in redefining the narrative.   I think it is about going from either /or to both/and in a way that makes sense and that legislators understand and can buy into.  I think there are many people trying to do just that.   They are trying to say I care about human rights but that doesn’t mean I care less about what really helps.   I care more and much of what is commonly done just doesn’t work well. Neither position is antithetical to the other. 

It means saying psychiatric hospitalization doesn’t really help much other than perhaps providing a short term safe place for some people,  if it even does that.   It means in a new era where “evidence based”  is the new fashion it has no evidence base and the testimony of thousands and thousands of people attest to that.   It means saying that the financial burden of hospitalization makes it too little bang for way too many bucks.   It means saying that at minimum it is a way to little solution for a way too big of a problem. 

It means saying the reality of AOT is different than the advertisement of it.   In New York,  probably it’s biggest incarnation,  it serves 1/3 of 1% of the people served in the system.   At best it is a small answer to big problems.  

It means,  and this is crucial, that the experience of those who have seen family members hurt in the system is not less important but more.  

Neither homelessness or criminal behavior is the result of a defiency in the coerciveness of the the mental health system and there is no evidence that it is. 

It means making people more aware of alternatives that are working.   I think it means saying that a system that is increasing by millions of people because of health care reform cannot depend solely on roles like psychiatrist or psychologist that don’t have enough people to meet the demand they currently face and that increased importance for people in peer support roles is inevitable. 

I think it means saying it is long past time for official recognition of the role pharmaceutical companies play in the way we deliver mental health services.   

I think it means saying the key to mental health reform is not to create a system it is harder to say no to but one it is easier to say yes to. 

Like everyone my experiences have helped form my view of what needs to happen and I think it is fair that I disclose at least part of them. 

Many years ago my sister in law committed suicide.  She had been hospitalized multiple times and was taking medication and medication for her medication.  I think she just lost hope in finding a better life and finally lost hope there was even a  better life to find.  She took a handful of pills.   It took 3 days to die.  To this day I  see her as a casualty of a  system that told her that things were worse than she could possibly imagine and then convinced her they were right. 

2 years ago her son,  my nephew, committed suicide.   He never got over his mother’s death and his life was one problem after another.  Now,  in retrospect,  it is painfully obvious how much help he needed.   He walked out one night and laid down in front of a train.   He never once sought any kind of help as far as I  know.  He wasn’t going to repeat the same mistake his mother made. 

I don’t know how exactly to build a movement of both/and.   Perhaps smarter people than me can help find a way.   Either /or offers no hope,  no change, nothing better for anyone.   In our battles I fear we have forgotten the war. 

I  hope all this has made at least a little sense.   I  have many more questions than answers and if anyone feels like I have misrepresented their stance I apologize for that.   It is not my intention. 

I really hope there is a better way.  This way is not working. 


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