Reprinted from Steve’s Thoughtcrimes by permission of the author Steve Bringe.
Today, I negotiated with the City of Albuquerque for DBSA support groups venues and a venue for our SUTS (Stand Up To Stigma) May Mental Health Education Fair.
I also wrote a letter declining a sizable donation after much consideration and board discussion. I wrote a letter thanking a prior support group venue for their hospitality and that we unfortunately are moving venues because of severe safety concerns, also after much consideration and board discussion. Neither of these letters were easy or a pleasure to compose.
I paid my bills, marveling at how much water can cost per unit and vowing this is the year I build a cistern for gardening. I contested a recent billing from my insurance company. I questioned an unknown fee on my phone account.
Recently, I endured a nine hour deposition in the Walgreens suit that did not include a lunch break. I then had to review the deposition transcript for any errors, another four hours of my life in a nearly 300 page transcript. This is difficult stuff, having to relive the trauma of being nailed in the back of the head by a huge sign at Walgreens (not my error, t’was theirs).
I’ve been grieving the loss of Clare, the idiocy of her family and friends, and recovering.
I’ve been vocal about my treatment concerning MHRAC and have learned people I once respected are documented liars. So there’s something else that self-empowerment dictates I care for.
Seems like a lot to juggle, yes? Seems odd that a peer can take on so much, yes? Why, I must be “high functioning”. That’s the term used for me, both in conversation and in medical records.
You should have seen me last year, in particular last August and September when I was paranoid out of my head that the police were going to break into my home and throw my arse in jail. For what? For nothing. I was paranoid because I had low potassium. Hypokalemia. I was hospitalized at Haven for that. And then I was hospitalized again at Pres because my hands and legs stopped working. Again, low potassium. Hypokalemia. Entirely unrelated to bipolar, by the by.
Was this “high functioning”? I have a solid command of the English and French languages. I get by pretty well with ASL. No false modesty, I’m really smart. I’m a very good public speaker. So I’ve been accused of being “high functioning.” How am I labeled when symptomatic? How am I when I cannot do any of the so impressive tasks that make me “high functioning”? Is there a medical category for “temporarily not high functioning”?
It’s an insulting turn of phrase, much like how I had to untrain Muggles at meetings from telling me “You’re so articulate FOR A PEER.” Yes? Well, you’re so ignorant for someone who works with peers daily.
There’s a commonality in saying to me “You are so articulate for a peer” and “You are so high functioning.”
I learned a lot from my Care Coordinator girlfriend, Clare Castellano (angel above), about the classification system used by Molina New Mexico for peers. It’s based on a tri-level system of NEEDS. When I’m at my best, I have no need for care coordination. When I got out of Pres and Haven, being on a walker, unable to drive, unable to cook, unable to get to my provider appointments and retrieve my medications from the pharmacy, having difficulty talking and concentrating, I was a HIGHER NEEDS peer, a Level 3 at that. Now, I have no needs for care coordination once more.
Did I change as a person when having Level 3 needs? Did I become “stupid”? Incompetent? Low functioning?
Nope. I was still Steve Bringe, and I was struggling, and I needed additional help. And I could still be in a place where I am struggling and needing additional help. Thankfully, I’m recovering and continue to noticeably recover both mentally and physically. I always ways and will forever be Steve Bringe. Other than for helping define treatment parameters and billing purposes, don’t box me in, baby baby.
Clare worked with Level 3 peers in the field (and was fucking excellent at her job from what her peers shared with me), and these were not stupid, incompetent people. They are people who need additional assistance to complete tasks. They just happen to have ailments like bipolar and schizophrenia. That’s on the behavioral health side of things.
On the physical health side of things, there is also Care Coordination. What’s the difference? None. Because Clare pointed out that Care Coordination is Care Coordination, and separating BH from PH is impossible in getting her “little members” all the assistance and services they need. Lacking a mental health diagnosis, the same attention to higher needs is offered and achieved.
I’m not blind to the fact some peers will most likely have higher needs for much longer than I did. However, these are not stupid people. These are people who need assistance with everyday living because of the way their mental illness affects them. Not because they are “low functioning.”
It’s the go to move to say “Would you say someone who needs help getting to dialysis or someone who needs physical therapy after a car accident or someone who is literally blind and can’t drive to the pharmacy is ‘low functioning’?” If you answer anything other than “no” then you are making excuses for playing into an embarrassing stigma. Embarrassing for you, not the peer.
While categorizing peers in terms of level of service needs is not ideal, it is also not euphemism, and it is very much practical and infinitely more honest than generalizing peers as “high functioning” and “low functioning”. Like EVERYONE on the planet, sometimes we need a little more help than other times. And just because I can out-lawyer the lawyers at behavioral health meetings doesn’t make me “a high functioning peer”. It makes me a person quicker and more logical than a lawyer I’m going toe to toe with.
Hey, maybe I am stupid. I just ended a sentence with a preposition. I’m sure there are some split infinitives in here, too. Sue me. I dare you.
– Dedicated to Clare Clarissa Nina Castellano who taught me much about Care Coordination and what it truly means to be a person who cares for PEOPLE.