Advocacy One Day, But Not The Next

Tim -

On his blog today, Pete Earley posted a recap of a speech DJ Jaffe gave at the New York State NAMI conference earlier this year.  DJ Jaffe and his mentor, Dr. Fuller Torrey, are two of the most outspoken advocates for AOT legislation in the country.

I have blogged before about my feelings on what Mr. Jaffe advocates for.  He draws a very clear distinction between what he considers, “the most severely mentally ill,” and others with mental illness.  I do not.  There’s a thin line between stability and instability and I don’t see the point in making a distinction between the two, because a person on one side of the line today can easily be on the other tomorrow.
So, here’s the thing, Dj Jaffe:

Your definition of a “high functioning” person with a serious mental illness is someone voluntarily on their meds and not incarcerated or homeless.

So – what about someone who:

  • is actively having hallucinations and delusions, even on meds
  • can’t get housing assistance because every waiting list in the state is closed
  • is hospitalized every three months
  • has an IQ below 70 because the psychosis has eaten away at his brain
  • cannot be left alone and requires an aide 24/7
  • has attempted suicide in the past year
  • can’t hold down a job
  • can’t get Medicaid to cover all the medication he needs to keep him even remotely stable

But he’s voluntarily taking his meds, isn’t homeless, and isn’t incarcerated. Does he still count as someone you advocate for?

The difference between him and med non-compliance and incarceration is one day:

  • One day when his psychosis breaks farther through is meds than he can handle.
  • One day when he has to spend a few hours alone in an afternoon and his delusions lead him to suicide.
  • One day when his psychosis tells him his sister can read his thoughts.

It takes an unbelievable amount of energy to keep him on the side where you don’t feel the need to advocate for him. But the difference between persons with serious mental illness like my son and the persons with serious mental illness you advocate for may just be one solitary day.

  • The day my appendix bursts and I have to be hospitalized.
  • The day his father gets snowed in and can’t get him from school.
  • The day the pharmacy has to order his meds and they don’t arrive in time.
  • The day Clozaril stops working.

Think about that, please, when you consider who you are advocating for.

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