With both shock and sadness, I heard yesterday about DJ Jaffe’s passing the day before. It couldn’t have been more than a few weeks ago when I responded to one of his Facebook posts. He hid his illness well and worked tirelessly until the very end.  Others who knew him well have already written beautiful commentaries and his Facebook page has an outpouring of condolences which I hope his whole family will read.  I didn’t know him well, but my son and I benefited directly from his work as an outspoken advocate for the most seriously mentally ill.

About 1% of the population suffers from schizophrenia.  Within this group, there is a wide range of functionality.  I don’t think there is such a thing as a “mild” case of schizophrenia, but some people are able to work and live independently, enjoy family and friends and have deeply meaningful lives, in spite of their illness. This is usually made possible when the person receives superlative and consistent private mental health care.

In the middle range, we have loved ones with schizophrenia who may not be able to work or even live on their own. Some need to live in residential programs or with family, looked after by caretakers.  On the extreme end of the spectrum, the most seriously mentally ill, often referred to as “gravely ill,” end up incarcerated, hospitalized long term or live on the streets.   DJ Jaffe made it very clear that he was an advocate for the most seriously mentally ill, the “4%” as he would state repeatedly when challenged by those who do not believe any mentally ill person should ever be treated involuntarily. Without the amount of involuntary treatment needed in current times, the results have been a disaster. In some cases, it was DJ Jaffe alone who brought to light some of the most insane and arcane laws and policies still in effect today, which discriminate against people with schizophrenia, who cannot fend for themselves.

I have recommended DJ Jaffe’s best-selling book, Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, to anyone who seriously wants to understand what is wrong with the current mental health care bureaucracy and how a genetically based brain illness became criminalized. DJ Jaffe fought against what causes this stigma and lack of empathy, to prioritize the most vulnerable in our society.   It’s a tall order, but the best way to honor DJ Jaffe’s life and all his work is to continue advocating for the most seriously mentally ill and to never give up hope.