This morning I was talking with my friend Jim Ogle, former president of NAMI Albuquerque, current chair for the legislation committee for NAMI New Mexico, and loving family member.
Jim and I sometimes won’t see eye to eye. I’m a peer who self-advocates with great skill (and lots of trial and error), which is different than his family’s experience. So, there are times we come to the same cause with partially opposing perspectives, although ultimately we only want what’s best for ourselves and our loved ones.
One frustration I’ve come to accept as more than valid from Jim’s perspective is that if peers won’t stand up to be heard on important issues and legislation, it isn’t acceptable for these peers to complain after the fact. It’s a reasonable expectation of people in general, although it’s not really congruent with the life experience of myself and many of my friends who live with a mental health diagnosis.
It’s through my friendship with Jim that I’ve come to understand about peers and legislative education. It’s also through recruitment attempts to get peers involved in the legislative process that this understanding truly came into focus. And it’s through my personal life experiences that this understanding became succinct realization.
As said, Jim expresses some frustrations with an apparent disinterest from peers participating in developing or commenting on bills like 2646 and our recently passed AOT statute. As with everything in a peer’s life, whatever we do has to be with making sure recovery and wellness comes first, and then everything else second. Let me explain.
If a peer is struggling with medications, if a peer is in and out of the hospital, and if a peer is unaware of their treatment efficacy, these real needs must be met first before getting involved in the legislative process and peer advocacy. When I was at my very worst, there is no way I’d have the insight or energy to take part in promoting or denouncing things like AOT, much less taking an active role in advising on AOT.
I was a heck of a lot more invested in finding meds that worked, finding providers who were worthwhile, and keeping myself as symptom-free as possible so I wouldn’t lose my son in my divorce to a mother who outright told me she would make me so sick I’d lose Scott and move out of state where I’d never see him again.
What was my priority? Staying healthy. How much time did that take? All the time, and by that I mean every second of every day.
Even if I wanted to take part in the legislative process (I didn’t), and even if I had the energy to expend (I didn’t), and even if I had the confidence to participate (I didn’t), I simply didn’t have the time to do so. My recovery and wellness came first.
It’s such a weird, self-defeating irony, that those who would benefit the most from taking part in the legislative process, those who need to weigh in on this legislation this most, these are the peers who lack the capacity to do so simply because of… the peer experience and what it means to be a peer struggling with the symptoms of a mental illness. I can speak in retrospect on what would have been useful to me when I was at my worst (CET, Community Engagement Team), but at that time I wouldn’t have been able to speak up… because I was too all-consumed with just making it through to the next day.
There is a website called “Mad In America” that I’ve been frequenting, and one repeated concern on the site’s articles is there are not enough peers making an appearance at important meetings and events to have our voices heard. Val Marsh, writing on a “call to action” to speak out against HR 2646 (Helping Families in Mental Health Crisis Act) on Capitol Hill in June, lamented the lack of peers in attendance. This is an excerpt from her MIA article:
“[…] I was there with three comrades-in-arms. Four of us in a sea of people recruited by NAMI and the Treatment Advocacy Center. There were people there who had flown in just to be at this event.
[…] I wondered why we were so easily outmaneuvered. And I realized that, as the saying goes, “Size matters.” NAMI has the capacity to issue an action alert and get thousands of people to act. That alone makes the difference.”
She makes a lot of really good points about the necessity to have a stronger, unified peer voice in legislative proceedings, especially those bills that directly affect peers. The one thing I felt was missing from her article was acknowledging that the peers who most needed to be at the congressional hearing were the peers who, like me going through my divorce, were the most unable to attend the congressional hearing. Staying healthy took precedence, and staying healthy took every microgram of energy I had and every picosecond of time I had.
Yes, family-oriented organizations like NAMI do have the ability (and resources) to bring together thousands of voices from Families in Mental Health Crisis. That there were “four […] in a sea of people recruited by NAMI and the Treatment Advocacy Center” is not surprising in the least, from my own life experience and the personal stories of my peers.
I suppose what I’m saying is it’s not disinterest or apathy that keeps peers from participating. Peers care about legislation that affects peers. Honestly. It’s simply the nature of the peer experience that limits our ability to participate at the most crucial times, and that is a pity of enormous proportions.