(2-19-16) I received emails last week from two readers who were angry that the Senate Judiciary Committee had asked me to testify but had not asked anyone with a mental illness to speak during a recent congressional hearing.
“People with mental illnesses can speak for themselves,” one declared. “You have no right to tell your son’s story,” the other noted.
My response to their emails surprised them. Why? Because I agreed with them – although I didn’t appreciate the accusatory tone of their complaints.
Every time that I have been asked to testify before Congress, I have urged those in charge to include someone with a mental illness on the witness panel. Every time. Having a hearing about mental illness without including someone who has recovered from one is a missed opportunity. You wouldn’t hold a hearing about heart attacks without including someone who had suffered one. I’ve always felt strongly about this. That’s why my speaker’s contract includes a paragraph that states that if I am asked to participate in a panel after a speech, that panel needs to include someone with a mental illness.
After the horrific shooting on the Virginia Tech campus, I wrote an Op Ed in The Washington Post that criticized then Gov. Timothy Kaine for not including a person with mental illness on the panel investigating that tragedy. At its first meeting, I told members of the Ad Hoc Police Practices Review Commission in Fairfax, Virginia, that it needed to include persons with mental illnesses on the commission.
I also have always made it clear that I am telling my story. This is why my book is entitled: CRAZY: A Father’s Search Through America’s Mental Health Madness. Kevin and I don’t agree on some of the reforms that I feel strongly are needed. I always recommend that reporters, who interview me, also interview him. We are a team.
None of this means, however, that I do not have a right to tell my story as a parent. Nor does it mean that I cannot advocate for programs, such as Crisis Intervention Team training, jail diversion, and mental health courts, that I believe — based on my personal experiences and research — would improve our broken system.
I regret that the email writers assumed that because I testified and because I speak out as an advocate that I am opposed to listening to individuals with mental illnesses and am against encouraging them to speak out.
My thoughts about this have not changed since I published the following blog in 2013 after I noticed that several hearings had been held in the House about Rep. Tim Murphy’s mental health bill without any input from someone with a mental illness.
Congress Needs To Listen To Persons With Mental Illnesses (originally published 5-27-13)
From the moment I was first contacted by a House subcommittee investigating our failed mental health care system, I have urged its staff to hear testimony from persons with mental illnesses. Rep. Tim Murphy (R.Pa) has conducted two hearings and a public forum, the most recent being held last week.
Yet, the House Oversight and Investigations subcommittee of the Energy and Commerce Committee still has not heard from anyone who actually has a mental disorder.
Rep. Murphy risks undercutting his subcommittee’s earlier accomplishments unless he holds another hearing — this one entirely focused on listening to persons with mental disorders.
Unfortunately, excluding persons with mental disorders from events is still much too common. I often arrive at symposiums, only to find that no “consumer” has been invited. This is wrong. It further marginalizes and stigmatizes our loved ones.
The most common excuse I hear is that a consumer might be embarrassed if he or she is asked to tell their story. Why? There should be no shame in having a mental disorder — only shame in not offering meaningful help to someone who needs it. I am not blind to the dangers of speaking out because of stigma. A person has to wish to speak out publicly. However, the idea that no consumers want to speak is ridiculous.
The Washington Post yesterday published a front page story about a man with a mental illness. Take a moment to read the comments posted on my blog by consumers. NAMI runs In Our Own Voice. Speakers also can be found at Mental Health America and Depression, Bipolar Support Alliance.
I have never been involved in a mental health group where there is no one willing to speak. All too often, consumers don’t volunteer because they are not asked. No one thinks there is anything that can add. They might say something embarrassing.
When Virginia governor Timothy Kaine appointed a panel to investigate the shootings at Virginia Tech, I urged him in a Washington Post editorial to appoint a consumer on the panel. Who would know better than a consumer what barriers might keep someone who is showing the symptoms of a mental disorder in college from seeking help?
Clearly, if someone is in the midst of a psychotic break and has impaired thinking, asking them to heal themselves is nonsensical. But most persons who are in recovery have strong, insightful opinions about what helped and didn’t help them. Even when someone is psychotic, listening to them and treating them respectfully is important.
The last time my son was picked up by the police, he asked the Crisis Intervention Team officer to let him ride to a hospital emergency room in the back of a police car without being handcuffed. Using his discretion, the officer chose to not shackle my son. When they reached the hospital, my son thanked the office for treating him with understanding. Unless you are a person who has been handcuffed while psychotic, you may not understand how significant that CIT officer’s action was. The previous time when officers encountered my son, he resisted when they handcuffed him. That’s when he got tasered and ended up being hogtied.
I listened to him and I learned.
I realize that some are fearful of having consumers testify because many of the most vocal often express views that are contrary to the medical model and to psychiatry. As long as individuals express themselves respectfully without engaging in personal attacks, browbeating and hyperbole, then they should be heard. Their arguments can stand or fall on their own merits.
I’ve been told the subcommittee doesn’t have money to bring witnesses to Washington D.C. to testify. (Perhaps it should get a grant from SAMHSA!) Fortunately, there are many eloquent consumer advocates who live near our nation’s capital. Dr. Kay Redfield Jamison probably knows more about bipolar disorder than anyone, in part, because she lives with it. She would make a fabulous and fair-minded witness.
I wish the subcommittee would find a way to lure Catherine Zeta Jones, Jane Pauley, former Rep. Patrick Kennedy or some other high profile figure to the witness table because that would generate publicity and show the public a different face from the photos of the shooters in Aurora, Tuscon, and at Virginia Tech.
The subcommittee’s Democratic co-chair, Rep Diana DeGette (Colo.) reminded her fellow members last week at the start of their third hearing that it still hadn’t heard from consumers. The subcommittee needs to listen to her.
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