The Hard Questions
NAMI NE Regional Conference, Spring 1998

Since I've been asked to speak on the topic of including consumers in NAMI, I thought someone ought to raise the hard questions, and that someone might as well be me.

So here goes:

Do you really want consumers included in NAMI, 
or are you doing this to be "politically correct"?

I think each affiliate and each state organization and National needs to ask themselves this question before we move any farther on this topic. I'm sure we'd all agree that it sounds like a good idea, "morally right", timely, and so forth... but including consumers in NAMI means we consumers will have a voice and we will use our voices to speak and we will expect you to listen when we do.

Which leads me to my next question:

Are you ready for the change in attitude and the heart change
that will be brought about in you as individuals and as organizations
by including consumers?

What will happen as your beliefs need to change based on what you hear from consumers rather than your assumptions about what consumers want and need? Are you ready to accept as equal partners those of us for whom you are accustomed to substituting your own judgment? Can you possibly make room for us -- step aside from your position as experts on mental illness in families -- and allow and encourage us to own our own expertise in the context of an organization that is based on the family experience of mental illness? Are you ready for that? Do you really want that?

Which brings me to my next question:

Are you ready to confront within yourselves and your organizations
the prejudice that you have?

Whether inculcated by a society that reviles the experience of mood swings, fears, voices and visions -- mental illness -- or learned in the process of "family trauma" that NAMI has come to recognize as part of living with a person who has a mental illness, the prejudice is there. Are you willing to have revealed the subtle ways in which that prejudice, that you may not even know you have, colors the way you look at consumers?

And, finally:

Is equality a reasonable expectation for consumers
who wish to enter NAMI as your partners?

Beyond the symbolic, beyond the well-intentioned gesture, beyond the tokenism to which many efforts have fallen prey, is NAMI really going to be a place where consumers may work as equal partners with family members in bringing about much-needed change in our organizations, our culture, our country?

I don't want to soften these hard questions -- I want you to take them back to your affiliates and back to your states and back to National and think long and hard about them. But I also want to say that I believe that these obstacles raised by the hard questions are not insurmountable and would, in the end, have a very good effect on the organization. You have a membership problem; we might be able to help solve that. You have an inclusion problem: trying to get young families, and spouses, and siblings, and other interested parties involved in NAMI has proven difficult; we might be able to help with that. It is my observation that you also have a "graying" problem and while wisdom comes with age, so can stagnation and, inevitably, a shrinking pool of talent from which to draw.

We might be able to help with that too.

My personal belief is that is not only possible but probably a very good thing for NAMI to become more inclusive of consumers. Both consumers and NAMI have a lot to gain from a meaningful partnership. I do believe, however, that the ability to develop a meaningful partnership depends almost entirely on the process of answering the hard questions.