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.

Related Posts

  • Jenifer November 21, 2014 at 8:01 pm

    As you point out later in the letter, the amount of energy it takes people with the illness themselves or their caregivers is immense. I would take it even further and say it doesn't even take a day. It takes a SITUATION. An overload of stress that can happen in a moment. Razor thin, that line.

  • Eleanor Owen November 21, 2014 at 8:31 pm


    I think you’re not reading DJ correctly. He knows there are thousands and thousands of individuals with mental illness, their families, their guardians, therapists, community mental health counselors, social workers, administrators doing the best they can as advocates for those on, as you say, “your side of the line,” albeit today or tomorrow.

    He, and I believe rightly so, — as a deeply compassionate and exceptionally insightful person– has dedicated most of his adult life advocating humane, appropriate and continuity of care for the thousands and thousands of persons with severe mental illness who are too often “legally disenrolled” because they “aren’t compliant.” These individuals are the most ill and, because they either do not have sufficient insight, or are plagued by voices, visions, commands—end up “flying” out of apartment buildings, “stopping” a train, “eating” razor blades, “severing” testicles, “blinding” the light—end up dead, disfigured or in jail or prison.

    Future historians will say, “For shame, America. For shame. The only developed country in the world that routinely puts people with severe mental illness in jails and prisons, and increases funds to expand those facilities –while deliberately closing wards designed to protect and care for them in medical hospitals.”

    What DJ is saying is what I, a co-founder of Seattle’s WAMI (1978), co-founder of SWAMI (1979), a co-founder of the National Alliance on Mental Illness (1980) have been saying, what Treatment Before Tragedy is saying:. THIS SHAMEFUL NEGLECT MUST STOP!

    We need your help in bringing this shameful neglect to a halt. Support HR 3717. JOIN Tb4T.

    Eleanor Owen

  • Chrisa Hickey November 21, 2014 at 8:32 pm


    I agree it must stop. But not at the cost of others who also need our help.

    This is why I challenge DJ Jaffe:

    "Many people I worked with including myself, have had or have depression, anxiety, have trouble sleeping, take Zoloft or Prozac, or nothing and do quite well. We don’t need funds diverted from the seriously ill to the highest functioning."

    He said that, in his speech at the New York State NAMI convention.

    But, in my opinion, that's arrogant and flat out wrong.

    How many people died in a mass shooting on December 22, 2012? 26.

    How many people died that day by suicide?


    Acccording to NIMH, 90% of them had a diagnosable mental illness. That's 95 of them.

    Also according to NIMH, about 10% of persons with some mental illness have schizophrenia, the most severe. So of the 95, that's about 10 of them.

    So 85 people died on December 22, 2012, in the US, but of a disease that Dj says we shouldn't pay attention to. And 85 more will die, every single day.

  • Lauren November 22, 2014 at 4:04 pm

    I have a serious mental illness, have experienced homelessness, and have experienced periods in which I was unable to afford any form of medication or treatment. During this period, I was not taking medication; but it was not due to lack of insight. Rather, I was not taking medication due to issues of affordability. Medicaid applications had a backlog of over six months, and I had no other means of obtaining the costly medication. Consequently, my health declined and I experienced many frightening episodes. With a history of psychosis and no safe place to sleep, the line between insight and total instability was thin, and the line between homeless and incarcerated even thinner. Where would DJ Jaffe place me, in his arbitrary, constructed definition of serious mental illness? I was homeless, but was I really non-compliant? I was not taking my medication, but that was because I couldn't afford it.

    I live in a state with AOT. While the results have been mixed, being in AOT means that one receives medical and community assistance. Had I crossed that line, I would have qualified for these services, and AOT itself; but I only would have crossed that line because the service system was so poor to begin with. If you look at the history of Kendra's Law (NY) you will find that the story behind the law is similar. Kendra Webdale's killer voluntarily sought help – repeatedly – but was turned away due to lack of beds, not being dangerous enough, wait lists being too long, etc. Most of his repeated hospitalizations were voluntary, but he and his family were never able to secure follow up help because funding had been slashed. The irony of Kendra's law is that Kendra Webdale's killer would not have qualified.

    Fighting for AOT is not enough, and fighting for AOT at the exclusion of these other services is irresponsible. All people with serious mental illness need access to services, and people can have a serious mental illness and still at one point have had insight. People shouldn't have to lose it to get care; creating that system only perpetuates the issue of needing to be "sick enough" prior to receiving services.

    That's where DJ gets it wrong. He seems to think that those who do not fall neatly into his side of the line already have access to care. He couldn't be more wrong.

  • mental illness March 6, 2015 at 8:56 pm

    The National Alliance for the Mentally Ill (NAMI) states that 16 percent of the prison population can be classified as severely mentally ill. This means that they fit the psychiatric classification for illnesses such as schizophrenia, bipolar disorder, and major depression.