National Alliance on Mental Illness
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One Really Good Idea
By Robin Cunningham, for the HealthCentral Network
This is number three in a series of seven blogs made possible by the encouragement and financial support of The HealthCentral Network. All represent interviews with senior officers of NAMI [National Alliance on Mental Illness] or other luminaries that attended the NAMI 2007 annual convention. They cover a wide range of topics that should be of interest to everyone that is involved in one fashion or another with mental health issues.
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Joyce Burland, Ph.D. is the National Director of the Education, Training, and
RC: I’m both a consumer and a family member. My daughter has bipolar condition and suffers from severe anxiety, so I took the Family-to-Family course. It gives family members hope when they need it most.
JB: If anybody ever asked me, “Did you ever have one really good idea in your life”, I would say “Yes, I had one really good idea”. And that was I was going to trust family members to be teachers of other family members. So when you talk about all I’ve done, I’m very grateful. I think we’ve had 8,000 or 9,000 NAMI members who have taken this course, come to the training, and gone back to their communities to teach the course. So it really is their project.
RC: This course has had a positive impact on so many lives.
JB: People have asked me what caused all this activity. I really want to tell you it was a citizen protest. I could not believe in 1980, when my daughter became ill… that still nothing had changed [since the ‘60s when her sister had been diagnosed with schizophrenia]. Family blame was as prominent as it ever was 20 years before. Families were shut out of any kind of collaborative involvement with their desperately ill family member… I simply found it unacceptable that in the United States there was this kind of prejudice against a group of people who were stepping forward to say, “Help me be helpful”. We were told, “You are not helpful”. We thought that was absolute baloney. My daughter was gone, I think, in 7 days. Some of these schizophrenias just come on like tornadoes. You know it’s physical. You see the changes. And then somebody is telling you, “Your daughter’s infant psychosis is breaking.” I said, “You’ve got to be kidding”. And that’s when I began to think, we have to do it. If they’re not going to help us, we need to help ourselves. We need to learn how to understand these illnesses. We have to see our family members as heroes, which we did not because the professionals did not. They were incurable in those days. It was all wrong. And I just protested. It wasn’t as much anger as it was outrage.
RC: Look what it’s led to. Look how many people you’ve helped, people you haven’t even met.
JC: But that was the idea, that it was ours to do. Maybe it still is. Because I think we do it best. There are many other interventions that professionals can do that can be very, very helpful, but not the business of coming to emotional terms with this kind of life change and this kind of life trauma. We really teach a course based on understanding the traumatic aspects for you and for us as family members, and dealing with that and normalizing it and coming to terms with our changed lives… But we have to learn how to do that. Nobody tells you the things, the lore, what you need.
RC: The first symptoms of my schizophrenia appeared on a Sunday. My parents took me to the minister on Monday. The results were not good. They sent me back to school on Tuesday. Again, the results were not good. That night, they had a bitter argument. My father said he’d seen what mental illness had done to my aunt and uncle (both had schizophrenia and were institutionalized). He said it destroyed their lives and he wanted to give me a chance to work it out on my own. My mother reluctantly agreed, but said if I wasn’t better by Friday, she’d take me to a psychiatrist.
JB: But this is what we see when this kind of cyclone hits a family. There are going to be big arguments. And I can’t tell you how many people have told me after taking Family-to-Family, “You’ve not only saved our daughter, you’ve saved our marriage.” Because you can’t make good decisions if you don’t know what you’re dealing with…I never had any doctor tell me about the illness. Nobody ever educated me. We had never had any family education before the 1990s when this started. There were isolated programs in universities that might have been research programs, usually based on “let’s give the family a little therapy to shape them up”.
RC: I was fortunate to get best practice treatment even though I was diagnosed in 1956. My psychiatrist was trained in Europe and believed the cause of mental illness was biological. He also immediately involved my family in my treatment. He was ahead of his time.
JB: There was no vestige of holding up family strength in the older way of looking at it and there was no appreciation of the strength of the individual who had been stricken. It was all deficits, you see. But we have to change that because we will never come out from under stigma if we are all seen as lesser than somebody else. You can’t get ahead with a rap like that. And here we are -- heroes as families. I want to say to any family that you’re not to blame. And the longer you sit without calling NAMI, the greater the pain will be. Because when you come to NAMI, we can orient you around what you need to know about these illnesses, how your own personal life figures into the care-giving job that you’ve been given, how to talk to your family member, how to help family members communicate, how to solve your problems. So come on in. It’s just essential.
RC: Just how did the NAMI Provider-Education Program come about?
JB: Five years after we started Family-to-Family, people said this has been so valuable, would you please teach this stuff to providers? They need to be more compassionate, more understanding of the real lived experience of mental illness… So we started the provider education course, which is now in 23 states. We have to talk people into letting us in because they don’t train line staff in many of these places. But we have been very persistent about putting it out there and I think we’re beginning to meet with success now. We really need to be recovery oriented. This is a transformative idea for us. And in order to do that, we have to call up systems of support. You can’t do this alone. It’s so important. … So we offer them a 10-week course in literally living the experience of families and consumers. They tell us in Family-to-Family, it is life changing for family members. They [providers] tell us it’s changed the way I look at families, it’s changed the way I look at my clients, I’m more patient, I’m more understanding, I see the heroism of their struggle. Well, that improves the relationship enormously. So these are things we should have started in 1920. We just didn’t get a chance.
RC: There are many people who are silently suffering at home, trying to hide their illness, trying not to let anybody know.
JB: Well, you know we also have a Peer-to-Peer course that is moving forward, which is people with mental illness teaching others. I think in every class that I teach -- I teach a course every year. It keeps me honest and I love it -- for every one I see, 24 people sitting in a group, I see a thousand people in the dark that we’re not reaching. If they would only come forward. Stigma has to be confronted when you have these illnesses, and it’s very tough for people to do that. But life is so much more terrible in the darkness.
RC: I’m on the New Jersey Governor’s Council on Mental Health Stigma. We’re putting together a three-year plan on how to address stigma. It’s enormously complicated as you know.
JB: This is a puzzlement to me because this has happened for centuries –- whether it’s schizophrenia, depression, bipolar illness, OCD. It’s been in the human realm almost forever. But we don’t see it as a human event. We don’t even see it as a brain event. We can really understand that we can have a heart attack because you know that organs in our bodies can be under siege. But it’s been very difficult for people to accept the fact that the brain, which we think of as mind and soul and about everything else, is also an organ of the body. Sometimes I see an ad that is very persuasive. It says that autism hits 1 in 150 children. But schizophrenia hits 1 in 100 teenagers. We don’t have that message out there. These are common illnesses.
RC: My aunt developed schizophrenia when she was about 30 years old and spent much of the rest of her life in the state mental hospital. When she was first diagnosed, her psychiatrist told my uncle that if their children had any further contact with their mother, they would develop schizophrenia. So all family ties were severed. It was agonizing for him, but in the end, he followed her doctor’s recommendation.
JB: This makes sense in a Dicken’s novel, but does not make sense in 2007. This degree of ignorance has willfulness behind it. Here again, our culture is not willing to understand what we need to do. Now we had one unusual sign of a social contract and it occurred with Prop 63 in California. The population passed a proposition saying that anyone who earned over a million dollars would give a percentage of that million dollars to the mental health system for the care of people with mental illness. So we are now working very hard in California with all of our programs because the only money they are allowed to spend is with projects that must be new and innovative… So we’re doing our very best to get all of our programs into California under this banner of new, innovative, effective, science based programs. Peer programming is now an event in this country. It was not before. We are now providing services. NAMI really is. We reach 12,000 to 15,000 people a year with Family-to-Family. And that’s now a community service, which always needed to be there.
RC: I tell all the In Our Own Voice presenters that I train that they are in fact performing a very important social service. And they come to believe that; they understand that. Once they’ve given one or two presentations, you see the changes in their faces.
JB: Oh, they are wonderful. What it’s done for them. To be involved in something that is meaningful, that is effective. In many cases, it’s their first step back into the world.
RC: What new programs are you working on?
JB: Our newest program is called NAMI Connection, where we hope in five years, we will have trained consumers all over the country through our NAMI state affiliate organizations to run daily support groups across America. Because we know consumers in the first stages of recovery…that is a wonderful place for them to be. And they all tell us, if we’d had this support group, it would have made such a world of difference. So this has been rolled out at our convention here in San Diego… So we’re very persistent in our department. We keep rolling out programs that are going to make a difference. We see this as our duty, our obligation, and I must say, as our joy.