Back in March of this year, Congressman Tim Murphy, Republican of Pennsylvania, sponsored a hearing to the House Oversight and Investigations Subcommittee of the House Energy and Commerce Committee on violence and severe mental illness.   Many people were called to testify, including author Pete Earley, NIMH Director Dr. Thomas Insel, parents of persons with severe mental illness, and Dr. Fuller Torrey, founder of the Treatment Advocacy Center. Of the six questions Congressman Murphy posed to the panelists in preparation for their testimony, only one had to do with individuals with untreated severe mental illness.  The rest had to do with all persons with severe mental illness, including children.

After the hearing, I wrote an open letter to Congressman Murphy, asking him to include persons with severe mental illness on any subsequent panels:

Finally, I am gravely concerned that there was no mental health care consumer on the panel that testified yesterday. I am not sure how we can discuss what is in the best interest of the mentally ill without asking the opinion of persons with mental illness. Would a hearing about cancer rates be as valid if there were no cancer survivors testifying? Of course not. We talk about, as you stated, wanting to, “take mental illness out of the shadows,” but then do not invite the very persons we are trying to help. I have two teenagers, ages 17 and 18, who have severe mental illness and are stable. I have advocate for them in full view so as to teach them how to one day advocate for themselves. I cannot imagine deciding their treatment without their knowledge and input. I wish your subcommittee had given mental health care consumers that same respect, and heard their input on how they are treated by today’s mental health care and social services systems.

 Last week, a second hearing was held before the same subcommittee about SAMSHA and its role in servicing the severely mentally ill.  And while Dr. Torrey spoke again, not a single person with a severe mental illness was invited to testify.

If you are a person or you love a person with a severe mental illness – and let’s be clear, we are talking about  Bipolar Disorder, Schizophrenia, and Schizoaffective Disorder – this should enrage you.  What Congressman Murphy and Dr. Fuller Torrey are stating is that you don’t have the right, nor do you deserve to be heard about what it is like to get treatment and services if you have a severe mental illness.  That you don’t have enough control of your faculties to have any coherent or useful input.  That out of at least three million people in this country, none have anything valuable to contribute to the conversation.

There are plenty of folks in this discussion that feel this way.  DJ Jaffe, Dr. Fuller Torrey, and Dr. Xavier Amador are the de facto ring leaders among them.  They feel – and state, quite publicly – that if you are even remotely close to stable, your opinion isn’t valuable.  They need to speak for every severely mentally ill person.  After all, DJ Jaffe said directly to me, we don’t have Alzheimer’s Patients or the Developmentally Disabled testify before Congress!

Um… DJ? Yes, we do:

http://www.aging.senate.gov/hearing_detail.cfm?id=341499&

http://blogs.app.com/capitolquickies/2013/03/05/developmental-disabilities-an-early-focus-of-budget-hearing/

But Jaffe, Torrey, and Amador want us to forget that.

Forget about the fact that it takes an act of God to find a psychiatrist that 1) takes your insurance or Medicare, 2) is accepting new patients, and 3) is even remotely close to where you live, and when you find him or her, the wait to get an appointment is, on average, eight weeks.

Forget about the fact that supported housing is scarce, the waiting lists are enormous, and cities all over the country fight having them anywhere near their neighborhoods because you are all so dangerous.

Forget about the fact that you can’t find a job because more than 50% of you dropped out of high school, and supported employment programs are as rare as supported housing.

Forget about the fact that you can only get inpatient treatment after proving you are already a danger.

Forget about the fact that the easiest place to get housing and treatment is in prison.

None of that matters because you were, on some level, well enough at one time to try and get yourself some help.

Know who else was well enough, at one time, to try and get help?  These guys:

There’s a thin line between when a person with a severe mental illness is stable, and when he or she is not. Maybe we should hear from them about the pitiful state of mental healthcare in this country before more end up crossing it.