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Everett Franklin Interview 2/8/02 [We wish to thank Everette and NAMI for granting us this interview]

We're meeting this afternoon at On Our Own of Roanoke with Everett Franklin, Vice President of NAMI-VA, to get his take on the consumer movement. EFHM: Everett, as Vice President of NAMI-Virginia, and as a family member who's been involved in mental health advocacy work for many years, can you tell us what role you see for the mental health consumer in NAMI and in mental health advocacy generally? In response to the first question, with regard to the role of consumers in NAMI, I would see the consumers assuming leadership role positions, especially on the state and national levels. We have made an effort in the past several years to add consumers to the board of directors and also to the executive committee of NAMI. I know this addresses one of the questions later on, but I do see the consumers taking a stronger leadership role and position. And my reason for that, is something I started advocating six or seven years ago when I got involved in this movement . . . was that I started teaching a phrase: It is a 3-prong approach--family, consumers, and professionals working together, a triangle approach to the whole future of the mental health system. And if one angle of that triangle is not in there then it is difficult to attain the right kind of goals. A triangle approach.

EFHM: Everett, how far do you think NAMI-VA has come in terms of being inclusive of consumers, and what challenges remain? I think in the past 5 years NAMI-VA has made great strides first in their philosophy toward the inclusion of consumers in leadership roles in the state. I think there is work to be done on that in the future, for example when we have board members who are consumers that some particular attention needs to be given so far as transportation reimbursement and those kinds of things . . . . and I'd like to have provision for when a consumer or any of us may not be feeling well and may have a lapse and may not be able to attend a couple or three meetings . . . . I think that needs to be built into the by-laws to allow for an absence from the board for six months or something.

EFHM: There have been some charges that we have been made aware of from several quarters throughout the country that NAMI local affiliates often discriminate against those with mental illness by making them feel somewhat unwelcome at meetings and refusing them full participation in the organization. Can you comment on such charges? I think that the question that you ask there is very fair, and one that needs to be addressed, and at the same time I realize that it is a delicate issue, it's a very delicate issue. And I can understand the statements that have been made, some of the charges that have been made, and the feelings on both sides. So I think it's going to be an ongoing process, it's not going to be an issue that can be settled over night . . . six months from now the issue will not be settled. The reason for that, (to give my reason for that) is that one time at a NAMI state convention we had about 300 people in the room--family members, consumers, professionals, and I stood up and asked "What should constitute (be the makeup of) a support group?" And it's interesting the answer I heard from the floor. There were those who felt that NAMI groups should be for whoever comes. That was one answer. On the other hand, there were consumers who spoke up and said "Well, that's good but I think we need to have our own support groups, too, because we have things that we need to talk about and discuss that we cannot discuss openly and fairly in a group with our family members, there would be conflicting issues--both sides would be uncomfortable. Then there is a third approach to it, of having a unified support group with both family members and consumers and then at those AMI meetings have two support groups at the end of the meeting, and that is done in some areas. So as I have worked with support groups in SW Virginia and in other parts of the state I find a variance of all three of these approaches. But I think the overriding philosophy is that at some point in the future that we will arrive at such unity and administrative coherence that it is just one [group]. Now whether we'll ever see that in its entirety I don't know, but I'm sure that's the goal we all want to see. So I haven't fully answered your question, but yet I didn't want to avoid it by saying I have specifically addressed this issue at a NAMI state meeting.

EFHM: You've spoken a little bit to this, but I'd like you to specifically address the possibility of a consumer led and directed NAMI at all levels, and why you feel as you do. Let me ask you specifically what do you mean when you say "a consumer led NAMI at all levels?" What do you precisely mean by that? EFHM: I would precisely mean where consumers are in what would be considered positions of power, leadership and where the other members of NAMI would look to consumers for leadership, input and as experts in dealing with or in identifying the issues and what we need. I would assume that you're speaking of NAMI from a national point of view, from top-down . . . I think first of all, so far as the National Alliance is concerned, at a national level, it is structured to be run by a board of directors. And that board of directors, when openings come up, that directorship is open to anyone. So it's somewhat a competitive approach. They oftentimes when it comes time for national elections, there are more candidates than they have positions open, so it means they are actually competing for a slot on the board of directors. So that's an open process for consumers and family members and professionals. So anyone may run for the board of directors and that is the governing body of the Alliance. And certainly I think we all would like to see more and more qualified consumers in national positions especially those who are intellectually prepared for it and have a positive agenda that would move the organization forward. I've always been an advocate of the philosophy that you can get more with honey than you can get with vinegar, and there are those people here and there, and you and I know them, who have their own agenda, they have a pony to ride, and they can never contribute anything in a positive way. So I'd like to see more and more consumers, qualified consumers, in places of national leadership. And I base that on one fact--the psychiatric community is beginning to make the statement "We really need to learn from you." Because in many cases even though the psychiatric community may be highly trained, they still don't know and admit they don't know the answers to many situations. No more than you know, and no more than I know. Now they may have some answers as to how medication may be able to do something, but even then medication is just a mask, it's never a cure. So I think there needs to be more consumer involvement on a national basis to communicate to the professional community and to the families as to what is the reality of mental illness. Who are you really? Not looking at you as a textbook model. Through my last six or eight years of my work, most of my valuable information and the best friends that I have are those who have been diagnosed with a mental illness. I'd like to see more leadership.

EFHM: Right now we see the consumer movement nationally is not well-focused. Consumers are split into different camps and only a small percentage of consumers are participating politically. What steps do you think we as consumers can take to bring us together and speak out as one voice in society and in the political arena, thinking about the barriers and the activities we can undertake to accomplish that end? I think one real gap in the state of VA right now in the consumer movement, is that there is no movement. It's rather fragmented . . . We had a consumer organization at one time, but it fell apart. The only thing I know you can do is through the contacts like you're making with other organizations and asking the assistance of NAMI to help you since they have funding from the state to assist with consumer education programs, but as you talk to other groups maybe you can pull together, say, a group of twelve key people in the state who would be committed to getting a new statewide consumer organization started, whatever you would want to call it. I think a good name for a statewide consumer organization would be "Empowerment for Healthy Minds." But as you make contacts find 12 key people . . . The second thing that is important that consumers can do, especially in terms of making an impact on our government: Nothing ever changes in the state of Virginia without changes in the legislation. We can stand up in meeting and bark until we are blue in the face, we can say "we need 10 million dollars for medicine, etc." but we need to present specifics. There needs to be a voter registration drive among consumers, something that is specific and has a plan to it. . . . . So that when you stand before the legislators we can say that when I'm making my plea for this particular cause I'm representing 65 percent, the percentage of the consumers who are registered to vote. I know for a fact that a legislator was overheard to say "We don't need to listen to consumers--they are not voters." . . . . Legislators are going to pay attention to their constituency. Thank you Everette Thank you!