NAMI Legislative Conference
February 7, 1999
NAMI Executive Director
I just want to thank our staff, our board, our campaign, our volunteers, our campaign leader Rona Purdy, and all of you for what has been an extraordinarily energizing and unifying Legislative Conference. I’m so happy to join you during this 20th year of NAMI history.
Every time we have an activity like this one, we become a bit reflective. We look back and we look forward. And it has been noticed by others that for individuals with mental illness and their families, we are at the best of times and at the worst of times.
We increasingly know what it takes to give people with serious mental illness a real life. We know, in fact, how to promote recovery. But, sadly, in most places in this nation, we choose not to do it. We know what to do and we choose in our policies not to offer that opportunity for a real life.
Despite the advances that we’ve heard about from science and treatment that are bringing about better understanding and combating stigma, we still face in our communities today a psychiatric emergency, a real emergency situation for people with serious mental illness – people we know by name, people who we support, people who are with us in our hearts, in our homes, in our movement.
We have all these wonderful new treatments, more are coming, and they offer enormous hope. We see what they can do, we see what they can mean. But, if people can’t get them, it’s a terrible fraud to bring them forward.
We see that we can build a new understanding and a new legitimacy for brain disorders, for recognizing the reality that our illnesses are no different than Alzheimers, Parkinson’s, epilepsy, that, in fact, our illnesses should be recognized and accepted for the real medical conditions that they are. And, yet, we find so often that the understanding does not translate into policy change. We’ve got people saying the right words, but they’re still not doing the right thing.
We have an opportunity to move forward this year drawing on our success in bringing forward the parity issue. We all know that parity is only a tiny first step. It doesn’t really reach very often into our own lives, but it has been an important platform on which the rest of our message can be built.
People now realize that these disorders are being discriminated against by policy design – not by accident, not because someone forgot, but by design with knowledge. And, we’re the ones that have to live with the consequences.
We’ve seen in the healthcare revolution, in the managed care discussion, looking at the Patient’s Bill of Rights, that, so often, we’re still at the margin of those conversations. But, we now have a unique opportunity with the continuing concern everywhere in our country about health care, about the care for people who have complex disorders, about the care that extends beyond an acute phase in a hospital. These discussions are going on across medicine, and they are at the center of policy discussion and it gives us an opportunity to drive home the message.
We see in the political environment the opportunity with an upcoming White House Conference on Mental Health and the continuing devotion to this issue that we’ve seen with Tipper Gore, we recognize that NAMI has the chance to get our message out, to bring forward our agenda, like you have never seen in our former years.
We know, too, that at the state level, where the real action needs to take place, you have gained respect and attention from your legislators and policy makers. They know who you are and they know you mean business. And, we know that they’ve got money to spend. They’ve got surpluses. They’ve got to deal with our issues now, because they can’t put us off with tales of budget deficits and "next year" and "another time, when we have resources."
We need to take this opportunity to let them look right in the face of the tragedy of untreated mental illness, to let them know despite all the good news in science and medicine, the lives of most people we represent are in danger. We need them to understand the depth and gravity of the psychiatric emergency, the crisis in health care that our people, our families, we ourselves are facing everyday.
We need them to understand as we will be continuing through our Campaign theme that treatment failure, treatment denial is death in individuals who lose everything. They lose their very lives. We need to recognize the power of that message and that it is uniquely our message. I don’t think that there’s anyone in this room who hasn’t been straight up next to it. I think everyone in this room can name and share a story of treatment-denied death.
All of us know that this is not only unacceptable, but it’s outrageous. It’s outrageous that today in this nation at this time, that with this much hope and real potential for recovery, that we would lose one single life. We have to be the voice of that outrage. We have to go back home from this meeting and call our politicians to let them know that we will not be silent – not for one more day.
We need to take the "Mental Illness Recovery Act" and call on the supporters who have helped us in the past and bring forward those stories that we know and share in our support groups and lay out the vision of what recovery really looks like. We need to challenge the leaders in our states to build that recovery, brick by brick, so that the people we know about can walk down that road into the future. There is no more important work our legislators will do and we have to help them understand what that road requires. We have to make noise. We have to make demands. We have to be tough. And we have to be bold.
We must lay out the whole picture. That it’s not just a little bit over here and a little bit more over there and some additional increases in the mental health coverage. It’s a revolution in the way our states and federal policy makers understand what mental illness means and understand how people with mental illness can bring meaning back into there lives. You have to give them the whole picture and challenge them to take us seriously.
We have to bring forward the real lives, the real stories, not just the stories that reach the newspapers that are opportunities and teachable moments, but the stories that nobody reads.
Every once in awhile we have the opportunity to share a story. And, as our movement has become stronger and we’re recognized, somebody will come forward and share their stories and join with us.
One of the people that the Campaign has been enable to engage who has shared her story very publicly – a story that is enormously poignant and very powerful – is Danielle Steele. Danielle Steele is the best-selling writer in American history and has two or three of her fiction stories out every year. Danielle Steele has only written one nonfiction, a personal story she published a little earlier this year, a story called "His Bright Light". It was a story of a light, and a needless death.
It is a story that is astonishingly meaningful. It is a story that tells us money can’t buy you immunity, money can’t buy you safety. All the fame and fortune in this world does not stop the death that accompanies our illnesses because of ignorance – because of stigma – because of the pain of denial. Danielle Steele lost her son, Nick, at the age of 19. And, she shares in her book everything that her family did to try to save his life. And she tells the story of inept treatment, of the stigma and the denial, of the years of getting the wrong kind of help at very high prices. And she told of the terror of losing her oldest child.
She contacted NAMI because she wants to relieve someone from this tragedy. After her book was published, we had an opportunity to speak with her and interview her, to share her story with people across the country who need to understand.
In our Campaign newsletter Spotlight – you’ll see in the next issue of NAMI’s Advocate – there’s an interview we did with Danielle Steele that synthesizes in a compelling way the power and tragedy of treatment-denied death. She shared her story and we are able, through our Campaign to End Discrimination, to share 700,000 copies of this interview over the next several months. Our campaign sponsors are carrying this material – which features NAMI and encourages people to join – lets people know mental illnesses are lethal and no one is immune, and no one can feel safe until our system can respond. This interview will be in doctor’s offices and hospitals and clinics, it will be out there and it will reinforce our theme that we need our nation to respond or we will continue to lose far too many members of our society.
In our 20th year, I think we’ll see a rekindling of the revolutionary spirit that started this movement. We have much work left to do. And until we can build – brick by brick, community by community, state by state – a national response to the psychiatric emergency, a national response that cherishes these lives and supports and safeguards the potential of each of our members, we have not done what needs to be done. We need a mental illness recovery system for this country and that’s what the "Mental Illness Recovery Act" is all about.
Most of you -- I’m sure all of you – at the end of the day are still with us because there’s a person with a name who brings you here…maybe your name, maybe your family’s, sister’s, your brother’s. I know in my case the name is Shannon. You know my Shannon. I always like to tell her story because I’m so proud of her and because she reminds us what treatment can be.
My Shannon has schizoaffective illness. She has had trouble, she has been courageous, and she has had victory. She has graduated from college. She has a job. She has her own apartment. She has a life. She has friends, she has family and she has almost won herself a graduate degree. She will be receiving a graduate degree on May 15. She is proud and I’m proud. This is the kind of story we need to hear about and read about, not just the awful stories that we still see so often.
But I know that, every time I get a phone call from Shannon, I am one crisis and she is one relapse, one treatment denial, away from potential tragedy. None of us – not even those who have done the best – are safe. We are not safe until we build the mental illness recovery system.
We all need to remember that the mental illness recovery system is not there until we put it there, until we push the decision makers to build it.
I know that that’s at the heart of the advocacy this movement brings. It is the moral courage that is part of the legacy of mental illness in our own lives. It is this message we need to bring and the reason we persevere: Even those who have done so well are only one crisis away from tragedy, unless our system really moves toward the recovery, toward the reclaiming, toward a real life that all of us know is possible and must be made real.
As we begin to take up this challenge, I urge you to think about the whole spectrum of NAMI, from those who are most disadvantaged, from those who are so vulnerable, to those whose names we may not know, but we surely can feel -- all the way to those who seem to have no need for us at all. Remember how vulnerable and how fragile is the success we have. And realize how much we have to build so that more of the future will be bright and real, like the recovery that we’re beginning to see all around us.
Let us know how we can help you do this work. This is the work of our hearts, it is the work that’s at the heart of our movement and, in our 20th year, it is indeed going to rekindle the revolutionary force and power of NAMI.