I published this blog — OUTPOURING OF FRUSTRATION, WHAT’S NEXT? – the first time on January 24th, 2011 and was struck when reading it this week by how little has changed. Although it has been two years, I could have taken the date off this blog and published it as if it were new. It was written after I appeared on CNN’s State of the Union news show. I was a guest with my friend, Fred Frese, because of the January 8th, 2011 murders in Tucson, Arizona.
This week, I have received several emails from frustrated readers who want to do something, but don’t know what to do. Reader Joseph Meyer offered this suggestion on my Facebook page:
Annual NAMI Walks are not going to get it done–they’re just not enough! Facebook posts are certainly not going to get it done. The GLBTQ community has made huge strides in the last 10 years by getting in the face of people and basically saying “we’re here and not going away, so you damn well better get used to us.” Psychiatrists, psychologists, patients, caregivers, family, and friends need to rally publicly about the discrimination we face and do so loudly, regularly, and without regard for offending anyone. They GLBTQ gave us a model for success and we need to follow it.
I once asked then-Virginia Governor Timothy Kaine why mental health was such a low priority in Virginia even after the shootings on the Virginia Tech campus. As long as there is no national, mental health PAC that makes political contributions or a mental health group that can deliver votes – mental health is doomed to stay at the back of the line, he candidly told me.
A possible solution would be for groups such as the National Alliance on Mental Illness, Mental Health America, the National Alliance for Research on Schizophrenia and Depression, the Treatment Advocacy Center, the Depression and Bipolar Support Alliance, the Bazelon Center for Mental Health Law, and the Depression and Related Affective Disorders Assocation to put aside their individual differences and agree to meet together as part of an umbrella lobbying group for better mental health care. Their influence would grow if such organizations as BringChange2Mind and the Rosalyn Carter Center joined in. There are dozens of advocacy groups scattered across our country that could be part of a larger coalition. If other stakeholders, such as the National Sheriff’s Association, American Bar Association and American Psychiatric Association, joined in, then politicians might finally start listening.
Together, these organizations could afford to fund a PAC and could deliver votes. When Judge Steven Leifman forced all of the different stakeholders in Miami to sit down and begin working together, progress was made. Why aren’t we following that example on a national level?
FROM MY FILES FRIDAY: OUTPOURING OF FRUSTRATION, WHAT’S NEXT?
Published January 24, 2011
I have been inundated this week with emails, mostly from parents and family members, expressing frustration and anger about our broken mental health care system.
Here is a sampling:
*You touched my heart today on Sunday’s CNN show. I tried to get my son help over and over. He is now in prison. .. What now? No education, no job, a criminal record….no help.
*Unless someone has had a mentally ill family member, and had to go through this, they just simply don’t have a clue, so it’s very easy to pass judgment. My Mom would frequently go off her medication. My siblings and I struggled with this for years, and the upshot is, an adult has a right to be mentally ill and cannot be forced to take medication. I actually had someone who said, well you need to just force her to take her medication. Oh yeah, that works!
*My anger is not with Jared Loughner’s parents. My anger is directed at our national mental health programs that come nowhere near bringing awareness to the public – so that family members and loved ones can identify mental health problems, before it is too late. I am also angered at laws that protect the mentally ill – which allows them to reject necessary intervention.
*I’m sitting watching you with tears – State of the Union – Candy Crowley/CNN – I am the sister of a paranoid-schizophrenic man who committed murder in 1977 when he heard voices in his head and couldn’t be stopped -Our lives were shattered and we had to stay virtually silent for years because no one wanted to hear our story – because it was mental illness, we were shunned.
*I am desperate. My daughter C. graduated from high school in May ’09. She graduated 3rd in a class of 500 students. She was chosen to give the farewell speech at the graduation ceremony. She went off to a good university with a top scholarship. Six days later she called me and I knew something was very wrong. She is unsuccessfully battling Bi-Polar disorder as I write this. The same disorder her father was diagnosed with nine days before he committed suicide in 1996. ..
*I was in the middle of crying for my son, his 39 birthday is tomorrow. Yes, the illness is merciless. I am a member and contributor to NAMI. I just don’t see any big nationwide effort coming from them. The lobby is not strong enough. I wonder how many more tragedies like the one in Tucson, that involve well known people ( thousands die every day on the streets of our cities and in the homes from violence, nobody bothers to give them a minute of silence! ) is needed before we as a society bring mentally ill into the fold of empathy. This is not about a group here and there, it has to be a movement of most of the people. .. If medical professionals united and stepped in, our world would be a different place. Maybe then a lot more money would be given to the brain research, and there would be help for our loved ones. In comparison to cancer research, the money given to the brain research is dismal.
*Every single day we fear the phone call to come that our dear daughter, our only child- has died. She is 34 and we love her so much. She used to LOVE FAMILY and LOVE US. And now – she is alienated from us and we are scared. She has so many problems.
*We have a 39 year old son who has a mental illness and is not on medication. We tried a NAMI support group and didn’t find it helpful. Everyone sat around meeting after meeting just repeating all the sad stories. I don’t know where to get help…My son is in denial with his illness. He is not a threat to anyone and in years past, we had called police and mobile crisis and they said there was nothing they could do. In fact, one counselor told me he has a right to his delusions…
*Our loved one is 32, BP, has tried to kill himself five times. During his last suicide attempt in June, he’d found a gun, but it wouldn’t fire. Fearing he’d find another way to harm himself, we called 911 and when two police officers arrived, he decided on suicide by cop and came out of the house pointing the gun and yelling, “Shoot me. Kill me,” and one officer did shoot. It’s a miracle he survived. He spent time in the hospital healing before being declared mentally insane…Once he’d been stabilized, he was sent to jail, charged with 2 counts of attempted assault on a law enforcement officer, 2 counts of armed criminal action, 1 count of unlawful use of a weapon and since a third officer rolled his car on the way to the scene, a charge of causing serious physical injury to an officer reporting to the scene.
*My son died of suicide. He was 36. I travelled a long road of mental illness together with him. The mental health system failed us. It is a long story and I will not take your time for writing about it. Suffice it to say that my son was a sensitive highly intelligent child and adult, diagnosed with Major Depression, Dysthymia, Anxiety, Borderline personality disorder, Obsessive compulsive personality disorder, non 24 hour circadian rhythm, chronic nightmares and sleep apnea. In addition he had chronic pain in the thoracic area for which he was on Fentanyl. We were with psychologists who did not know how to address my son’s problems. He was afraid to go to big hospitals where there might have been professionals who new how to use DBT to help him, he was afraid they would tell him that he was crazy. He was not, and your son was not either. That word scares general public and medical professionals. I can see a lot of smaller attempts to help mentally ill. There is no big comprehensive movement to do so. Can you or somebody you know, start the movement and get millions of us parents to join you, we are a huge population that wont to do something but don’t know what to do and where to turn?
With so many people suffering, with so many people seeking help, the question now becomes: what’s next?
The Tucson tragedy has gotten the nation’s attention. There have been countless news articles, TV reports, much talk on the radio. My good friends at Fred Friendly Seminars persuaded PBS to rebroadcast the Minds on the Edge debate nationally to encourage debate about civil rights laws, a lack of community services, and our failed system.
But how do we change this conversation into action?