A "Consumer" Letter to NAMI Board of Directors

Date: June 28, 1999

To: NAMI Board of Directors

It was almost a year ago that I first wrote to this Board concerning my perception that NAMI is not interested in its consumer membership, their values, opinions, and goals. Since that time, NAMI has continued its hypocrisy, disrespecting consumers while proclaiming to represent consumers.

- Laurie Flynn has not apologized for her statement in the August 10 issue of U.S. News, "I think it would be a good thing to recognize again the old notion of asylum, to protect the mentally ill as well as society." - NAMI continues to use the horrific and stigmatizing phrase "the mentally ill."

- NAMI has refused to take a strong public stand against unethical research on human subjects, research which benefits the drug companies that support NAMI.

- NAMI ignored its consumer members for years when they spoke out against the use of restraints and seclusion. Yet when a Hartford Courant journalist wrote about these atrocities, NAMI jumped on the bandwagon of public opinion, feigning shock and surprise at the "news." (Would you have taken such a stand, even now, even with all the adverse publicity against these practices, if Charter Hospitals and similarly accused facilities had been major donors to NAMI?)

- NAMI claims to run an anti-stigma campaign while at the same time using stigmatizing language, sensationalizing violence in consort with TAC, and presenting images of persons with mental illnesses as incompetents in need of protection and involuntary commitment.

- Of course, the language and focus of the "anti-stigma" campaign is clearly aimed at eliminating stigma against the parents of consumers, not consumers themselves.

- In an effort to increase your membership, thereby increasing funding and political clout, NAMI shamelessly recruits consumers. I use the word shamelessly because NAMI does not inform them of NAMI's stance on issues like involuntary commitment and research on human subjects prior to enrolling them as members. But then, that would involve informed consent, wouldn't it? - the same kind of consent that many NAMI statements and actions claim many consumers are incapable of.

- NAMI claims to be a grassroots organization of families, but its grassroots are predominantly parents, family *members,* not family *units.* Look around. How many consumers are in attendance with their parents, spouses, siblings? How many families participate in NAMI activities? In fact, there are many affiliates nationwide who will not allow consumers to attend their meetings.

- Why is NAMI promoting the use of forced treatment, harming consumers and ultimately costing billions of dollars, instead of promoting the research and funding of alternative services that are desired and accepted by consumers? Alternatively, why isn't NAMI, who promotes a medical model, not supporting further research into the latest findings that demonstrate that "lack of insight" is biologically-based? Why isn't NAMI pursuing research on the barriers to professional help-seeking? (Of course we know from the Well-Being Project that the existence of involuntary treatment is a major barrier.)

- Why are NAMI members "outraged" when law enforcement officers use excessive force against persons diagnosed with mental illnesses, against persons NAMI claims only respond to force, against persons who NAMI says are so violent that society needs to be protected against them? Who's really to blame when police officers use force? Why are you surprised when people act on the messages you've been sending?

Perhaps worse than any of the above, is NAMI's promoting the Treatment Advocacy Center, providing publicity, support, and a free forum to spread false and damaging "facts" about consumers. After NAMI's Consumer Council's reaction last year to TAC's presence, why would NAMI once again participate in TAC's anti-consumer campaign?

I've attached some of the "facts" presented by the Treatment Advocacy Center and how Torrey and TAC have distorted valuable research, causing considerable harm to consumers nationwide. I hope you'll check their website, the major source of this material. There is much more that they've distorted but I've focused here on just one outrageous statement and its claimed source.

TAC's research contains valuable information for NAMI, but not the "facts" TAC is distorting and promoting - rather, the actual facts about violence within families. In the cases of violence that TAC has compiled, 42% of the 397 homicides allegedly committed by persons with mental illnesses are committed against family members. Another 24% are committed against persons the defendant knows, e.g., a boy/girlfriend, roommate, employer, or neighbor.

The real issue of violence is about interfamilial violence - just as it is in every other segment of society. Isn't it time that NAMI address this very real issue?

There is a critical need for family counseling, for families to receive mental health services and education on their own communication and coping skills. In order to promote "bad parenting doesn't cause mental illnesses," NAMI has not publicly supported (and has privately scorned) family therapy. It's time to change that. Old myths about the causes of mental illnesses are gone. It's time for NAMI to help the consumers and families it claims to help. NAMI needs to offer workshops and materials on preventing family violence. Involuntary commitments (IC) aren't the answer. Indeed, if the articles TAC has compiled are a reliable sample, IC is one of the *causes of violence.* Research is needed into the causes and prevention of this family violence. How much does consumers' anger and trauma caused by involuntary commitments affect family dynamics and future violence? It's not a question that should be tossed aside because the answer doesn't fit NAMI's agenda. That research will save more lives than IC ever will.

NAMI has much to make amends for and needs to seriously make these amends to its consumer membership. NAMI can start by focusing on family and real support and acceptance instead of focusing on consumers as "them," and "the mentally ill." NAMI can start to face and resolve real issues, acknowledging that medication doesn't solve *all* problems. NAMI family members can be taught to cease and desist the fight against family member stigma long enough to look at themselves with openness and honesty and to deal in the gray areas. NAMI can begin to exhibit a more global view and tolerance of mental illnesses. NAMI can also begin to promote prevention and to speak more about recovery than illness.

Most importantly and urgently, NAMI (including individual board members and staff) can dissolve its relationship and support of the Treatment Advocacy Center, renouncing TAC's distorted rhetoric and its stigmatizing, discriminating, anti-consumer goals.

In sincerity,

Laura M. Ciprotti

Marietta, Georgia 30060

E-mail ChoicesGA@aol.com

CC: NAMI Consumer Council

NAMI State Presidents Association