Mental Health America asked me to moderate a thought-provoking panel that featured four nationally-known activists during its annual convention in Washington D.C.
Kay Redfield Jamison doesn’t need an introduction. Her memoir, An Unquiet Mind, was the first book I read after my son, Mike, became ill, and it spent five months on the New York Times bestseller list. She is not only brilliant and well-spoken, but also unassuming.
The other three panelists were new to me.
As executive director of Boston University’s Center for Psychiatric Rehabilitation, William A. Anthony was one of the first advocates to preach that persons with mental illnesses can recover and live meaningful lives.
Larry Fricks is the director of the Appalachian Consulting Group and author of a bestselling book called, Strong at the Broken Places, about his life. His expertise is peer-to-peer services.
Thomas Nerney is executive director of the Center for Self-Determination and has been instrumental in drafting legislation that has shifted federal dollars away from state institutions and into community treatment, as well as, laws that safe-guard the civil rights of persons who have severe illnesses.
As moderator, my task was to discover what motivated these four individuals to become advocates. Fricks talked movingly about how he had been inspired by Dr. Martin Luther King Jr. and the civil rights movement. Nerney spoke about how he had become outraged when he worked with patients and saw how they were being abused. Anthony mentioned how his parents had instilled in him a commitment to social justice. Jamison talked about the encouragement she had received from other psychiatrists when she first talked about her struggles with bipolar disorder.
The discussion quickly turned to the recovery and self-determination movements, in part, because as a parent, I have grappled with both.
What does recovery mean?
In our current climate of political correctness and everyone wanting to be encouraging and positive, I often think we have watered-down the definition so much that it has no meaning.
I was surprised when Dr. Thomas Insel, the director of the National Institutes of Mental Health, and someone whom I greatly admire, said in a speech at the NAMI national convention in San Diego a few years ago, that severe mental illnesses – much like cancers – are so devastating that some people are not going to get better. I appreciated his honesty, but such talk flies in the face of the recovery movement’s upbeat chorus and insistence that everyone can get better.
Our discussion about self-determination also proved lively because Nerney argued that every person, regardless of how ill they might be, has a right to make decisions about their treatment.
A key part of his argument is that even if a person is in the midst of a manic episode, he still can understand what is happening around him. This was not only Nerney’s viewpoint but Fricks’. He explained that even when he was psychotic, he had moments when he could think clearly – isles of sanity – so to speak. And it was during these moments when he could tell if someone was trying to help him and if they cared about him as a person. He argued that this is one reason why peer-to-peer can be so successful. No matter how ill a person might appear, that individual still has the capacity to sense when someone is trying to help them.
Self-determination and recovery are tough subjects for parents. As the panel moderator, I explained that most parents are motivated by concern and love. They believe they are doing the right thing when they seek to have a psychotic child involuntarily committed.
So what’s the answer? Are Nerney’s self-determination demands, that make sense when dealing with other illnesses, foolhardy when it comes to brain disorders? Or is he spot on?
And is it realistic to believe that everyone can recover?
Is Fricks’ claim about isles of sanity accurate?
How we answer these questions probably is shaped by our own experiences. And while I would like to think that we all could reach an agreement, I am skeptical that we ever will. It is difficult for me to believe that Nerney and Dr. E. Fuller Torrey, the architect behind Assisted Outpatient Treatment, will ever see eye-to-eye, although I respect each of them.
Personally, I believe we make a mistake if we believe there is only one solution. Because everyone is an individual, everyone’s needs will be different. Our system should encourage self-determination but permit intervention if necessary.
Which gets us back to the never ending stumbling block. How, when and who makes such determinations?
After the panel ended, Larry Fricks told me something that I really appreciated. He said that many parents talk about how they want their loved ones to go back to being the way they were before they got sick. This is impossible, he said. Instead of looking backward, he encouraged me to see the “new” Mike and appreciate all that he has overcome and achieved.
I thought about what Fricks told me and concluded that he is absolutely correct. Mike’s illness has dramatically changed him and our entire family. And I am extremely proud of the new “Mike.” But I also have friends whose children are not doing nearly as well as Mike and they would gladly turn back the clock. For them, accepting the new person and letting go of the old is heartbreaking.
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Pete – You have beautifully described the dilemma. There is no one answer to this. In 19 years of psychiatric practice, I have definitely seen people able to gain insight and move forward in recovery. Some people in the midst of psychosis or mania are able to have moments of clarity and people do tend to respond to compassion. BUT, there are others who are so adversely influenced by their psychotic or manic state that they absolutely do not believe there is anything “wrong” and go on to put themselves in vulnerable states or die by their own hand. Each person is uniquely different in presentations and needs. Is it “OK” to allow someone who is suffering from a brain disorder to dodge in and out of traffic thinking they are traffic controllers or sleep in a dumpster because he is “King of the Dumpster” or endless other examples I could give you? We are in a heat emergency right now. Is it OK to “allow” a person with major mental illness walk around in 10 layers of clothes with no food or water because he is too disorganized to know differently? Since these illnesses affect the brain (a very different organ than the heart or lungs or kidneys) they affect how people perceive cues and how they react to others. It is so complicated. All of the panelists were correct. Some will recover, some will not. But, we must always be striving for recovery and self-determination is always preferable. There are just some times that interventions need to made and those decisions are never made lightly.
Thank you for giving us a taste of what went on at the NAMI convention. Wish I had been there.
Pete – You have beautifully described the dilemma. There is no one answer to this. In 19 years of psychiatric practice, I have definitely seen people able to gain insight and move forward in recovery. Some people in the midst of psychosis or mania are able to have moments of clarity and people do tend to respond to compassion. BUT, there are others who are so adversely influenced by their psychotic or manic state that they absolutely do not believe there is anything “wrong” and go on to put themselves in vulnerable states or die by their own hand. Each person is uniquely different in presentations and needs. Is it “OK” to allow someone who is suffering from a brain disorder to dodge in and out of traffic thinking they are traffic controllers or sleep in a dumpster because he is “King of the Dumpster” or endless other examples I could give you? We are in a heat emergency right now. Is it OK to “allow” a person with major mental illness walk around in 10 layers of clothes with no food or water because he is too disorganized to know differently? Since these illnesses affect the brain (a very different organ than the heart or lungs or kidneys) they affect how people perceive cues and how they react to others. It is so complicated. All of the panelists were correct. Some will recover, some will not. But, we must always be striving for recovery and self-determination is always preferable. There are just some times that interventions need to made and those decisions are never made lightly.
Thank you for giving us a taste of what went on at the NAMI convention. Wish I had been there.
Personally, I believe we make a mistake if we believe there is only one solution. Because everyone is an individual, everyone’s needs will be different. Our system should encourage self-determination but permit intervention if necessary.
I think the above is the most important point you make. As I watch my 25 year old daughter sleep peacefully on the couch, I know the only reason she's able to sleep peacefully on the couch is because she has been receiving a court ordered Haldol shot for over 2 years now because she is so incredibly med non compliant. She is the poster child for no insight.
What I find disheartening is here in Arizona, the public system is changing the medical model to the recovery model. If you read all of the information they are posting on websites and handing out in clinics and you didn't have any knowledge of mental illness you would think these illnesses aren't very serious and all it takes is a person to want to get help and magically they'll be okay. Fortunately there is still an avenue for a court ordered process for people like my daughter, but I'm worried the trend is to remove the process of force medicating people. I absolutely HATE that my daughter is force medicated. But I hate more seeing her outdoors naked or thinking her Asian father is Dog the Bounty Hunter. Not to mention that people who aren't manic can't survive in a household with someone who is manic. When I say that to someone in the system they are now starting to make the recommendation that she find other housing. She doesn't want to move, I don't want her to move. I just want her treated which requires a medical model since doctors have to prescribe the medication. With the vast majority of people the medication is the primary piece of the puzzle that allows “recovery” so trying to replace one system with another doesn't seem right.
I also think the recovery discussion in some respects is a distraction from the more serious issues of mental illness which in my mind is that person who is in 10 layers of clothing during a heat emergency, sick people in prisons rather than hospitals, and most recently the budget cuts that are taking services away from our most vulnerable citizens.