Category: Stand Up To Stigma

Have you ever had a sibling you just couldn’t get along with and always bickered with and even though you were at each other’s throat you could still sit down at the family dinner table and love each other anyway?

This is nothing like that.

I am so aware of my reputation in the behavioral health community as a brash, diagreealbe peer advocate who turns people off because I am quick to challenge established protocol and quicker to express peer needs in blunt, direct terms. And my reply?

You see, I didn’t start out in behavioral health advocacy to make friends with the world and attend hugfests in a peer-hostile echo chamber. I started out in peer advocacy because I had friends in DBSA Albuquerque who didn’t even know how to apply for Medicaid (nor did I) and these friends desperately needed services and medications. Without insurance, this doesn’t happen. So, my friends suffer needlessly. They suffer. And I watched them suffer. Every week I watched them suffer. So why did I start attending meetings like LC2?

Some eight years later, I’m still out there finding answers. Better, I’m out there creating answers. The State of New Mexico gave me this Lifetime Achievement Award in Behavioral Health Innovation I think in part because . . . I have no idea why they thought I’ve accomplished everything I’m going to do by age 46. Am I supposed to stop living now? Weirdness.

In any case, with the help of my friends, we endeavor to help others understand our needs by sharing of ourselves and our life experiences. In this, we have the best opportunity of reaching Muggles, policy makers, providers, legislators, and the community. In fact, this is what Stand Up To Stigma is ENITRELY built upon. Peers openly telling tales of challenge and triumph to help others understand . . . by way of sharing their stories living with mental health issues.

As an important deviation, grammar style guides insist that all numbers between zero and ten be fully spelled out and not expressed with the digit character. Given the example above, “Some eight years later” is proper. “Some 8 years later” means you were too distracted from learning because of passing notes in first grade of the ilk “Do you like me? Yes. No. Maybe.” It must lag hard you got so many “no” notes passed back. Jenny Caruthers’ reply included a sketch of her vomiting all over your head. She showed me. That must be traumatic, any time a woman vomits in your presence. And then draws it. And sends it to you. I know this happened in the Cottonwood Mall food court on Sunday. It’s on YouTube and viral. Go check. You can run away from my blog but you can’t run away from the truth.

Hey, did you know that the beautiful bosque cottonwoods were not always as lush and established as now we enjoy? Farming upstream in the San Luis Valley of Colorado led to increased siltation and seasonal flooding as the Rio Grande passed through Albuquerque. The result was hyperalkaline swamps along the banks of the river making once-profitable farming in Albuquerque a historic relic beginning in the late 19th and early 20th centuries. Read up on Aldo Leopold and the Middle Rio Grande Conservancy. The reclamation he developed and initiated not only saved farming along the Rio Grande, it also provided the ideal habitat for lush, dense cottonwood forests along the Rio Grande. And, we got Tingley Beach, the Zoo, and the Botanical Park out of the deal. And a country club. And a path for Route 66. Speaking of cool historical stuff to read up on, research the history of Conservancy Beach … Municipal Beach . . . Ernie Pyle Beach . . . Tingley Beach before the polio fright in 1951. By all accounts it was magical.

Get this. I embrace my controversial slash & burn advocacy stylings . . . much like I embraced Jenny Caruthers behind the handball court and then told you about it right after recess in algebra class . . . because I’m proud of my ability to weather either reciprocated or reflexive defensiveness from those who tug gently the strings of peer wellness. It’s the frustration of penetrating the geometric din of the peer-hostile echo chamber (PHEC). Frustration. I’m sure destructive interference resonance within the PHEC is annoying. It’s natural to experience something you don’t want to hear as combative. I fault no one. I offer to embrace you if it helps you empower yourself to feel better.

By the by, my primary emotion at many behavioral health meetings is this frustration. It is not the emotion of pissiness. When I see my friends suffering and when I attend a meeting voicing their issues, concerns, and needs and join my friends later sharing that we’ve made no headway, I don’t feel like a very effective or successful peer representative. And by the by again, the honor of peer representation is often mistaken for showing up and being a peer placeholder. A dedicated representative listens to friends and represents THEIR issues, concerns, and needs. And ultimately, what is represented is our peer solutions. And by the by once more, it often feels like I’m talking in some weird moonman language. There must be moonman prejudices on these committees. I heard rumbles of building a wall between the US of A and the moon. For shame.

We’ve done a Stand Up To Stigma podcast where I share openly – with the support, encouragement, and love of my dearest friends – my experience with PTSD borne of my choice to be on the Mental Health Response Advisory Committee (MHRAC). The motivation for the podcast was for me to reempower myself through personal accountability and responsibility and create the effective reality of taking back the power I gave others on loan. The gift is as a team member of an independent peer collaborative I no longer am required to ask for permission to do what’s right in my heart and the hearts of my friends. The greater gift is our community now has a pure peer voice guided by this benevolent principle:

Our Stand Up To Stigma peer focus group is trained, is activated, and is coming to MHRAC. And we’re excited for the opportunity we’ve created for peers. We’re moving into the community. We’re offering our voice. We will share with you the solutions that will work best for us. Free of charge.

I’m happy to share I’ve come to terms with my PTSD symptoms. I’m happier to say I’ve reempowered myself. I’m happiest to say I’m back to the person I know I am. I’ve missed everyone so much it hurts. Let’s embrace.

By the by, this article is just a little tongue in cheek. Only just.

Reprinted with kind permission of Steve’s Thoughtcrimes.

Stigmatization is a cruddy reality for those contending with the symptoms of illnesses, mental and medical alike. There’s a group of terms affiliated with stigmas I really don’t like in the least, the most, and all points betwixt:

I’d like you to look at this photo of the NAMI Challenger. The front page article is one I composed during my time on the NAMI Albuquerque board. I ask you to look at this photo and remember it because when we travel full-circle back to “in the closet, “coming out,” and “outing myself,” the importance of this image will make sense.

So, I’ve got a buddy who is deaf (“Big D” as she calls it), and she is not the best at “reading lips.” That’s great for Hollywood scripts, she tells me, but not so great for actually carrying on a conversation. There are two things that bug her about people:

1.) When they raise their voices to talk to her, as if shouting will bring her hearing back.

2.) When people think she’s stupid, as in intellectually deficient, because her speaking voice is different than those of us whose ears collect noises and whose brains interpret the noises as sound.

These stigmas, when she was young and soon after she lost her ability to hear, had her hiding from the neighbor kids who were once her friends. After the accident that took her hearing, these “friends” became cruel, taunting, and vicious in the teasing and gossip they spread into the community that the accident made her stupid and deaf. She just wanted to hide, she just didn’t want to be with people anymore, she just wanted to die.

Now, she is a strong peer voice in the hearing impaired community (and I use the word “voice” purposely, and she likes it a lot), and she works with children with hearing impairment sharing her life stories and experiences to hopefully spare them the feeling of worthlessness and self-doubt that comes from being stigmatized.

In our chats, I shared with her that I, too, had feelings of worthlessness and self-doubt tied to my bipolar. I had a friend of two decades who stopped calling (after my wife… ex-wife now… told him I had a mental illness), I’d been fired from job after job, my marriage was a disaster and a failure, I’d been kicked out of New Mexico Tech… what I thought of myself was equivalent to what I thought of dog squeeze on the bottom of a nice pair of Nikes. I dreaded that point where someone caught whiff of me and tried to wipe me off on the lawn, the entire time cursing they ever met me… and the bottom of their shoe.

Stigmas abound beyond only medical and mental considerations. I gave a presentation to a group of kids at Polk Middle School earlier this year, and part of the presentation is asking the kids what stigmas they contend with in their lives. The typical teen-angstiness identified “We’re always on our phones,” “Everyone thinks we’re lazy,” and “All we think about is boys/girls.” I think they meant teen crushes, but I didn’t explore that one.

One young man shared a stigma that broke my heart. And, I could sense when he shared his stigma with the class that there was an implicit understanding with his peers:

The quality of this stigma, the impact it had upon the class, was tangible. It was real. It was beyond “always being on the phone” or “being boy/girl crazy.” A young lady followed up saying “That’s why I never tell anyone where I go to school.” Too many of her classmates nodded in agreement.

That sense of accepted worthlessness is something I realize and understand is part of any marginalized group’s mainstay. It’s a community bond built upon a foundation of presumptions, misconceptions, and lies. These kids believe that people think less of them because of where they live, and that this stigma they overwhelmingly feel is part of their identity is a preordained limitation on what they can accomplish. I’m not too proud to say I started tearing up when I heard the kids speak about this unfair assumption.

The word “unfair” is thrown out there so much and so often that it’s all but lost meaning. It’s unfair I have to wait until Sunday to see Force Awakens. It’s unfair she got to go to the company picnic while I had to stay at work and finish billing reports. It’s unfair he buys a brand new car every year and I’m stuck driving this clunker. Given these qualifications for “unfairness,” it’s easy to see why “unfair” is a nearly worthless word.

Yet when you hear from these Polk Middle School kids, the word “unfair” is afforded a clarity all but lost in the vernacular, that the magnitude and direction of vectored fairness is so real and succinct that stigmatization is unavoidable. These kids were all a part of a leadership class, and there is no mistaking why they were chosen for this class. Their leadership talents define them so much more than the geographic locality of their community.

That’s the crux of stigmatization. It is unfair and immediate, created by an unenlightened, self-appointed mob judiciary over generations. More than that, though, is stigmas become so pervasive and saturating that the people being marginalized come to accept the prejudice, and when this happens stigmatization mutates from prejudice to shame.

What is shameful about living in the South Valley? For me, it’s a gorgeous place to walk the old trails and follow the irrigation canals between neighborhoods. The history and culture are rich and so much more a part of New Mexico’s identity than my tract housing neighborhood. For some reason, though, kids living in the South Valley are ashamed to tell other kids where they live and where they go to school, and this is baffling to me. If anything, being part of such an important community is a trophy of pride and not shame.

Looking at different stigmas, and looking at my own life living with bipolar and how I’ve often devalued myself, there is a common link expressed almost universally by marginalized groups:

In fact, the shame is so powerful that people feel they have to hide themselves from public view and scrutiny. My Big D friend hid from kids who used to be her friends. The young lady from Polk Middle School won’t tell other kids where she goes to school. And me? I pretended that I was “normal” and dreaded that people would see the symptoms of bipolar that alter my behavior so detrimentally (read: I’m weird, I know it, and I hope nobody notices me because I just can’t handle another failed job, failed relationship, and failed self). I was ashamed of myself for having bipolar.

“In The Closet,” “Coming Out,” and “Outing Myself.” We touched on this at the beginning of this article, and as promised we’ve gotten to the reason I started the article talking about “in the closet,” “coming out,” and “outing myself.” This is a concept attributed initially to the LGBT community (I don’t know the full acronym any longer – please send me the entire list of letters if you know it and I’ll edit the text). Being “in the closet” was being homosexual and not sharing this with others. There are valid reasons for this, with the policy of the U.S. military being a fine example. “Don’t Ask, Don’t Tell” was actual policy and not just a catch phrase. Serving our country, protecting our freedom, rights, and liberty meant you couldn’t tell anyone you are gay. Where’s the logic in that? And yet there it was, and it was a policy that if you wanted to commit yourself to serving our country, it meant you couldn’t be homosexual, of if you were, you were required to hide it. It’s shameful to be gay while serving our country. It was official federal policy to keep people “in the closet.”

Now, stating proudly “I’m a guy who likes guys” or “I’m a girl who likes girls” is part of our American culture. Being “in the closet” has become more passe than “coming out of the closet.” Yet, the term remains. To share with those you love that you are gay still entails the idea of “I’m coming out of the closet,” shortened as “coming out,” and the choice and act of leaving “the closet” as “outing myself.”

I don’t like “in the closet,” “coming out,” and “outing myself” in word and concept, and this goes to the etymology of the phrase. The connotation retains the artifact consideration that “coming out” or “outing myself” meant I was hiding something that I felt was deeply shameful, and that I didn’t like who I was based upon others’ presumptions, misconceptions, and lies about what it is to be someone with bipolar.

I don’t like “in the closet,” “coming out,” and “outing myself” with such directed, purposeful zeal that it is part of my peer advocacy playbook. I don’t feel like I’ve “come out” to the public to share openly that I have bipolar. When I decided to start speaking in public about my challenges and triumphs living with bipolar, I wasn’t “outing myself.” I share openly that I have bipolar because I like who I am, and I’m hoping that my openness can inspire other peers to have the innate pride in themselves that every person on the planet has a right to.

Exactly like with “journey to recovery” versus “recovery journey” (I NEVER say “journey to recovery”), I NEVER say anywhere at anytime that me sharing my life experiences with others is the a process of being “in the closet,” “coming out,” and “outing myself.” You will NEVER hear me say “I’ve come out of the closet as someone with bipolar, and when I did I outed myself and you can, too.”

Why? Because while I felt inferior at the beginning of my recovery journey, and I felt I had to hide my shame away, the way I feel about the world and my place in it has evolved dramatically, and I’m exceptionally proud of who I am, and part of that is being a peer and a peer advocate. When I first began this peer advocacy phase of my recovery journey, I discovered in myself that I had no shame of having bipolar and I didn’t feel I had to hide my bipolar symptoms. There was no “coming out.” I didn’t “out myself.” There was only me sharing my life experiences with others in a celebration of life and all the quirky nuances that is the human condition.

So here is that photo again, zoomed in on a very specific sector of the article. “In the closet,” “coming out,” and in this article “outing myself” is not part of my vernacular, and I actively advocate removing “in the closet,” “coming out,” “outing myself” from the vocabulary of my peers.

That “outing myself” is presented in italics is a good indicator that my original article met with less-than-adept editing skills prior to publication. Sorry if anyone got the wrong impression, which many peers did at the time questioning, “Steve, ‘outing myself’ doesn’t sound like something you’d say.” Exactly. And please notice the “journey to recovery” kicking off the article as well. I covered this in an earlier “Letter to the NAMI Editor” article. “Journey to recovery” and “outing myself” in the same initial paragraph of my article are not my words or what I submitted for publication. Quality control and professional editing was not a priority for this issue of NAMI Challenger, so let this serve (vanity press) notice in lieu of a wordy editorial retraction in a future issue of NAMI Challenger.

If you’d like a copy of this NAMI Challenger issue, I’d highly recommend this specific issue. There is a very good article on WRAP, and a free WRAP class is taught at the NAMI Albuquerque office every Sunday.

Okay, so here’s the rub. I’ve learned a lot about myself as I understood more about stigmas. For you, I share a pocket-size version to take with you:

Dedicated to Mary Tabor, for without your warmth, leadership, and encouragement this article would not be possible. Thank you for everything!

Reprinted with kind permission of Steve’s Thoughtcrimes.