I could never do endorsement deals.
It’s not necessarily out of any moral sense. I couldn’t be a shill, even if I wanted to. I’m just a lousy salesman.
Probably not a good thing to admit when you have a book coming out. The sales division at Crown isn’t going to be too happy about that.
Obviously, honesty can be part of the problem. I am brutally honest, as regular readers of this blog know. That’s not from any sense of morality. No, I’m so honest I have shot myself in both feet on more occasions than I can count. It’s gotten me fired from jobs. It’s lost me friends.
That’s not morality. That is compulsive.
I am honest because I can’t not be. It’s how I’m hardwired. I will open up my big fat mouth not only when it is of no benefit to me to do so but can even cause harm to me (hence my friendly cyberstalker, “WarriorMom”).
But it’s not just a compulsive hyper-honesty. I can’t even sell things I believe in. If Jesus was standing right next to me, I would have a hard time selling you that God exists.
Which can be a problem if you’re an advocate for a cause because, let’s face it, advocacy is basically selling except rather than selling a product you are selling a concept of a better world than the one we currently have. It’s the same basic principal. You have to convince the public to support something that affects you directly but, at the end of the day, will not drastically affect the life of the person on the receiving end of the sales pitch one way or another.
My first direct experience with mental health advocacy was when Susan and I were asked to participate in a team at the Ventura County NAMI Walk in 2009. I was vaguely familiar with the concept of “walking” to raise money. I had heard of the Susan G. Komen “Race For the Cure” Foundation Walks. Jani’s old school does a “Walk” every year to raise money for the PTA.
But I expected the NAMI Walk to be different, because NAMI has something the Susan G. Komen Foundation and the Oak Hills PTA don’t.
Yes, breast cancer is an “enemy” in the sense that it kills millions of women, but that enemy doesn’t have someone pulling the trigger other than your own DNA. This is not diminish those who fight against breast cancer, or any other cancer for that matter. They are fighting against Nature, which is the biggest enemy you can take on. My hat is off to them.
NAMI’s enemy is not mental illness, or at least it is not supposed to be. I only know of one organization dedicated to funding research in cures for mental illness, and I can’t even think of its name off the top of my head.
In general, mental health advocacy is not looking for a cure. Before you can find a cure for something, you have to understand what it is. And before you can understand what it is, you first have to get the rest of the world to acknowledge it exists.
Hence, NAMI’s “enemy,” and the enemy of all mental health advocates, is society itself. The weapons of the enemy are either a completely non-existent mental care system, a woefully inadequate one or, my personal favorite, a bureaucratic government agency made up of clock punchers who simply don’t care enough to buck the system they work for and demand better for the those they are supposed to help (my disdain for the L.A. County Department of Mental Health and their “contracted agencies” like the Santa Clarita Child & Family Center are well documented in previous blogs).
For those of us in the field of mental health advocacy, our enemy is right in front of us. It’s that big building downtown that says “City Hall” on it or that bigger building that says “State Capital” or that architectural salute to American political failure, the US Congress (which today makes a better tourist attraction that a house of leadership-that goes for both Parties). It amazes me that one of their own (Gabrielle Giffords) could get shot in the head by a young man with schizophrenia and they still sit on their fat asses. I commend the effort it must have taken them to get to their feet with Rep. Giffords returned to the floor of the House.
I could say something really awful here about what to do if voices in your head are telling you to shoot someone, but I won’t. It takes everything I have not to write it (although I essentially did so I guess there is no point in pretending anymore). Seriously, how many more dead nine year olds is it gonna take?
A lot, until one of those nine year olds happens to belong to a member of Congress. Or until the person who pulled the trigger happens to be the son or daughter of a member of Congress.
Someone recently told Susan that the lack of mental health care is a “public health emergency.” She’s right, but I’ll take it one step further. It’s a moral emergency. It is a civil rights issue (when a government prevents a group of people from their God-given right to happiness, dignity, and a sense of well-being then that is a violation of civil rights).
It is the failure of our society to help those least able to defend themselves. They can’t defend themselves. They are too busy fighting a war inside their own heads. They need us to defend them from the world outside. That is our moral imperative.
So when I agreed to do the NAMI Walk, I expected a march through the streets to City Hall, chanting and raising our fists in the air. I thought we were walking to let the world know our children, our siblings, our parents, our families, were here and by God we weren’t going to let them die.
Except that we walked along the beach in Ventura to a swamp, then turned around and came back again. We didn’t even walk in a circle. We literally backtracked along our previous route.
There were no bullhorns. There were no chants. There were no fists in the air. There was no righteous indignation at the lack of services for the mentally ill.
In short, there was no fucking anger.
Those of you who follow me on the Jani Foundation Facebook page know I have been very critical of NAMI and other mental health advocacy groups, which I suppose to an outsider seems like cross-purposes. Because it fell that way. It felt like those organizations didn’t represent my family and didn’t represent the families and individuals who come to the Jani Foundation page everyday because they don’t know where else to go. As time passed, I found myself with a large group of people who desperately needed help and I couldn’t provide it, so I attacked the organizations with the deep pockets. Because I was angry that they weren’t helping the families I knew.
Which is partially true. Whether NAMI is helpful really depends on what you are looking for. If you are looking for emotional support, they are good for that. I was looking for emotional support. I felt like I was in charge of a group of refugees, trying to live in the middle of a battlefield between their child and their child’s mental illness. I have watched their children suffer and I have watched these parents do everything in their power to ease that suffering, often at the expense of their own health. I have watched them fight every day to pull their child back from the jaws of the beast that eats the mind of their baby or babies. I have watched them struggle desperately to hold on to the child they have, both physically and mentally. I have watched the hearts of both the children and the parents break. I have seen families torn apart.
I have seen children fight with everything they have against a demon no one else can see.
You damn right I was pissed off. Emotional support is all well and good but I wanted to ease suffering and I needed material help to do that, material help that no organization or government entity would provide. What help I have been able to provide has come from you: a select group who came here to this website and took up the fight as well. And what really amazes me about that is it wasn’t necessarily your fight. But you took it up.
You know a warzone when you see one.
Yes, my advocacy is defined by anger. I know I have lost people because of that. But it is hard to see what I have seen and not get angry.
And I now realize that is the real reason why I criticized NAMI and other non-profits in mental health: I expected to find an anger that would meet mine and if you weren’t angry like me then you just didn’t get it.
In that sense, I was wrong. I wasn’t wrong about being angry. I was wrong that if you weren’t angry, you didn’t get it.
I often refer to the Jani Foundation as “the Malcolm X of mental health advocacy,” a reference to Malcolm’s more militant stance versus Martin Luther King in the Civil Rights Movement. This perception of a dichotomy between the two in their approach to Civil Rights is not entirely historically accurate. King was capable of righteous anger and Malcolm X could crack your soul open like a walnut without ever raising his voice. The perception comes from the fact that King was fighting for an end to segregation while for many years, until he left the Nation of Islam, Malcolm advocated for it.
Once, a white college girl came into a restaurant owned by the Nation of Islam where Malcolm was and told him she wanted to help blacks and whites get together. In Spike Lee’s 1992 film, this scene is portrayed a little differently where the white girl says she want to know how she can help and Malcolm tells her, “You want to help? Go home.” What he actually said to her was, “There isn’t a ghost of a chance.” She went away crying.
I don’t know that I’ve made anyone cry but I have similarly turned away people like that college girl, for the same reason Malcolm did: she didn’t get it and there was no way she could get it. I wonder how many young people Jani’s story has “inspired” who I then rejected. I don’t know the exact number but I know it’s more than a few. What turns me off them is their positivity. It just rubbed me the wrong way. They have no fucking clue, just like that white college girl.
Slowly, this sense of segregation between myself and other mental health organizations conflated into a class issue. Most founders of mental health advocacy groups are wealthy. Most board members are wealthy. Many times it is the board members themselves who make the largest donations (with the exception of NAMI).
Again, because they didn’t appear to feel the rage I felt, I dismissed them as inauthentic. They weren’t raising their mentally ill kids. Nannies or very nice private residentials were. They didn’t live the same life. I criticized their fundraisers as “socialite get-togethers.”
Tomorrow night, the 8th, Susan and I will be speaking briefly at a fundraiser for The Flawless Foundation, to be held at the Fred Segal store in Santa Monica. It will be the first time we have attended a non-profit event or fundraiser since that NAMI Walk in 2009.
Mostly it is because the Flawless Foundation actually provides services to mentally ill. They provide gardening therapy and music therapy, among others. They fund professional development for special education teachers. In short, they do much of what I want the Jani Foundation to one day do.
Janine Francolini started the Flawless Foundation after her family moved from New York City to Portland and discovered that the support services that had existed in New York were absent in Portland.
This is from their “About” page at www.flawlessfoundation.org/about/
“The Flawless Foundation creates and supports programs that accomplish our mission of seeing, discovering and nurturing the perfection in every child.
Our philosophy of giving is inspired from a place of gratitude and passion for children. We are creative, hands-on and proactive in our vision to enrich the lives of children who courageously face challenges of neurodevelopmental and psychiatric disorders on a daily basis….”
I could never write something like that. I wish I could but I have seen too much shit.
Except so has Janine.
Malcolm X believed in segregation until he undertook the Hajj, the annual pilgrimage to Mecca that every male Muslim must undertake at least once in his lifetime, if possible. There he prayed beside Muslims of all colors. This is what he wrote in a letter back to the US:
“[L]istening to leaders like Nasser, Ben Bella, and Nkrumah awakened me to the dangers of racism. I realized racism isn’t just a black and white problem. It’s brought bloodbaths to about every nation on earth at one time or another.
Brother, remember the time that white college girl came into the restaurant—the one who wanted to help the [Black] Muslims and the whites get together—and I told her there wasn’t a ghost of a chance and she went away crying? Well, I’ve lived to regret that incident. In many parts of the African continent I saw white students helping black people. Something like this kills a lot of argument. I did many things as a [Black] Muslim that I’m sorry for now.”
I have come to realize that mental health advocacy needs two kinds of people: leaders and soldiers. I’m not a leader, at least not a political one. Janine can get major corporate sponsors. I will never be able to do that. I can’t clean myself up enough to do that. I’m a soldier. I’m your pitbull. I will get down in the trenches and fight the battle alongside you.
But we need somebody back home trying to end this war.
Tomorrow night, this fundraiser at Fred Segal is part of my pilgrimage. It’s the start of me trying to put the anger behind me. It’s the start of me trying to work with the leaders.
Because kids like Jani need both of us.
Update 12/8/11 6:13pm PST: Susan and I have had to cancel. Jani has destabilized, driven by extreme anxiety at our leaving. So we have decided that the best interests of our children we had to cancel. Our deepest apologies to Janine Francolini, the Flawless Foundation, and tonight’s guests.