Help Professionalize (Ex) / patient Advocacy

Poetry for Personal Power has been working a long time on social entrepreneurship. We are trying to create modular, scalable, repeatable ways of making system change. We figured out about four years ago how to do effective, expandable mental health messaging that actually reduces discrimination and prejudice. Since 95% of stigma reduction programs are ineffective, we couldn’t find funders for our health care messaging program. So eventually we re-branded as mental illness prevention and substance use prevention, and that has been working.

But in the meantime we have realized there are other needs in the psych survivor community. First off, why are so many of us working for free? And how do we get connected with people doing advocacy in other so-called medical areas? A lot of this has to do with professionalizing the career of (ex) patient advocacy. So we have some grants pending to pilot some repeatable, modular, scalable payment systems to gives advocates some income for the work that they do.

We need your help filling out a survey to let us know your thoughts on this issue. If you do unpaid (ex) / patient advocacy, fill this out. Let us know how to fairly split up money and how to help advocates build their careers.

And happy day! My vision rehab is finally working right and my eyes are getting stronger.


Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.


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  1. Hi 🙂

    Is a bit sad this important topic did not had more participation.
    Indeed, the payment is a key issue.
    Why are ex-users (put here the name you prefer), not getting the recognition they deserve? If i recall correctly (i dont have the book at hand), Sigmund Freud said the first recognition of his work what he began to pay taxes for his work (so he got paid).

    Now, i will add my 2 cents:
    I recieved peer support formation.
    I we were miserably paid, frankly if i did not enjoyed (and mostly… had hopes), at what i was doing… was the worst payed job i ever had.
    On top of that…
    a) i never got a recipt (even that was told i would),
    b) never got a copy of my contract (even that was told i would),
    c) never saw (or heard), of any iniative to legalize/profissionalize peer suport where i live. Zero.

    So, is likely much easier to control the poor and not educated.

    To work, to get paid… allow to keeps dreams alive and make them true.

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