Earlier this year, a bill entitled the “Helping Families in Crisis Act” made it through our US senate. At the time, a NAMI rep on the national level touted this is a huge triumph with the “full support” of NAMI. I raised an eyebrow at this, the assertion that all the membership of NAMI offered full support, or even majority support.
To the contrary, a number of articles published by peers who are members in NAMI decried that the “Helping Families in Crisis Act” put family needs first and peer needs second. Others peers offered that this act was the first step towards a national AOT law (assisted outpatient treatment, aka “Kendra’s Law”, aka “forced treatment”), which served only to circumvent a peer’s right to choose services for themselves.
On a more local level, a peer member of NAMI Albuquerque stated in a meeting with APD that “NAMI is a family organization first and foremost, and peers and peer programs are merely window dressing to make NAMI look better.” Ouch. That’s quite the condemnation. And it’s a condemnation that was not unique to this meeting. It’s something I’ve heard from fellow In Our Own Presenters and other individuals trained for NAMI Peer Signature Programs. The NAMI programs are great because they allow peers to reach other peers directly, but in the grander view these NAMI programs don’t have peer best interests in mind is what my friends were feeling.
Something even more disturbing that came from peer focus groups I held was that many peers felt that NAMI claimed “ownership” of peers, expressing peer membership in NAMI as “our NAMI peers.” The retort one peer stated in an early meeting was “We don’t say, ‘our NAMI parents.'” I make the joke that our Constitution guarantees that NAMI can’t own peers, and this joke falls flat because this is an impression that peer ownership is part of the structure of NAMI.
For a little less than a year I sat on the NAMI Albuquerque board, and during my tenure it felt like every chink made in the stone, steel, and opaque window of “peer window dressing” was quickly filled in with titanium-reinforced granite. Personally, I found this very frustrating. In a very diligent manner I was bringing peer concerns to the table, and aside from two board members I felt like it was a waste of my time being on the board if my charge was to help a peer voice being heard by the board that purportedly represented their needs.
Prior to John Barnum taking on the helm of president of my affiliate (NAMI Albuquerque), we had a president who spoke grandly of a “consumer event” where peers could showcase art, music, talents, etc., and that sounded like a great thing. Over a three hour Laguna Burger lunch, I heard over and over “We need to give peers this opportunity” and “It’s a great opportunity we’re giving peers” and “NAMI is the best way for peers to be able to reach the community.” For me, I’ve seen that peers are very capable as creating these opportunities for themselves, without hobbling or allegiance to an organization.
There was also the NAMI Albuquerque board member who deemed peers unprofessional for not “calling in sick” if they weren’t going to make it for our affiliate’s In Our Own Voice presentation at Anna Kaseman Hospital, which is held each Friday morning. Her thought on the matter was “I know when I’m catching a cold and I call my employer the night beforehand to let them know I would be out.” When told that the reality is a peer can go to bed in the best of moods, and then this same peer can wake up the next morning wanting to commit suicide, I was told flatly, “No, that’s not how it is. You have the obligation to call in the night before In Your Own Voice.”
I’m trained as an In Our Own Voice presenter, a Connection facilitator, and a Peer To Peer mentor. These are good education programs, and for the most part I am fine with their structure and content. Still, with the number of peers who have spoken in detracted or disparaging verse about their involvement in NAMI Peer Signature Programs, it’s difficult for me to want to remain involved. I don’t want my name to be connected to the NAMI brand if NAMI’s reputation is questionable to my fellow peers. I’ve got a reputation to uphold, with snickers and winks.
In an email this week, a NAMI Albuquerque board member spoke of “NAMI’s peers,” and I wondered if she realized that labeling peers as such is reinforcing the stigma of peer segregation, that peers are different than non-peer NAMI members. We are all NAMI members, and the separation of “peer” and “family member” is central to peer dissatisfaction if I’m hearing my friends correctly. For me, I know it’s one solid reason I resigned from the NAMI Albuquerque board and definitely influenced my choice to take a hiatus from the NAMI peer programs for which I am trained.
All this said, we have a great guy at the helm for NAMI Albuquerque again, Mr. John Barnum. He’s creating a concerted plan of action to help bring Peer To Peer to Albuquerque, and as much as I can I will help him and my fellow mentors get the ball rolling and assist in keeping the ball in motion. It’s two years since I was trained for Peer To Peer and the stop-start-stop approach to launching Peer To Peer has been straining.
I believe in John because he is my good friend, and more than that, he cares about peers, family members, and the community in a very balanced and understanding way. I know with absolute certainty that he is the best choice for our affiliate president and I encourage my friends to allow John to share his values and openness with all NAMI Albuquerque’s members.
Much like the Crisis Intervention Training Razzie, Taren, and I participate in for the Albuquerque Police Department, it’s about changing the culture from within. NAMI has the opportunity to model a change in culture that refutes peers as a separate category in membership and by expansion as a separate category in society.