Do NAMI and MHA suffer from Anosognosia?

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In the last couple of weeks, I've read two articles in which the National Alliance on Mental Illness (NAMI) is described as being the “largest organization representing people living with serious mental illness.” (Okay, so one of the articles actually said, “largest trade group representing Americans with mental illness,” but same difference, really.)

Since when?

Putting aside (for the moment) my issues with the use of blanket ‘mental illness’ terminology; since exactly when did they become a group that represents people who have been so labeled in any genuine sort of way? (Please don't come to NAMI's defense on this point with mention of 'In Our Own Voice.' Please.)

NAMI National’s very own website acknowledges that they found their beginnings as a “small group of families gathered around a kitchen table in 1979.” Families. Not people who were themselves struggling or who had been psychiatrically labeled. Instead, it was their Mothers, brothers, fathers, spouses, daughters, sons and so on.

Surely, the pain, worry, fear, and desperation of so many parents, siblings, partners and children counts for something, but ‘representatives’ of my voice they do not make. To me, that is akin to white people acting as primary representatives for those of color, or cisgendered individuals having the loudest voice on what transgender people need and want. That they should take such liberty or be afforded that title by others without question certainly is representative of at least two things: Public deception (or, perhaps, mass delusion) and a deep-seated, long-standing system of oppression.

Meanwhile, Mental Health America (MHA) did indeed (more or less) grow out of the work of one particular person who had his own personal experience with psychiatric diagnosis and hospitalization: Clifford Beers. One has to wonder, however, what Beers would make of their new ‘President and CEO,’ Paul Gionfriddo.

Comments

  1. Karen Mac's avatar
    Karen Mac
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    You are correct in what NAMI began as. I am a family member and feel that NAMI has given up on families too. They have become corporate. It is no longer run by family members.
    I know in Massachusetts there is a strong voice for those living with many brain disorders but they (NAMI) are political and don't want to step on people's toes.
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