content notes: ableism, madphobia, borderline-shaming, racism, racist language

Much writing about Borderline Personality Disorder is mediocre and redundant. It is bland and it says nothing new. Much of it is self-absorbed (I include some of my own work here). Let me just say that first (and again). I stumbled into Beyond Borderline: True Stories of Recovery from Borderline Personality Disorder edited by John G. Gunderson, MD and Perry D. Hoffman, PhD while looking for something else on Amazon – it was coming out in a week, so I pre-ordered it. I hoped it would be different. As you may already know, I’m always searching for challenging and complex writing on BPD, and more especially so since the DSM diagnostic criteria changed a couple years ago.

The description of the book reads:

If you have borderline personality disorder (BPD), you probably struggle to manage your intense emotions on a daily basis. Feelings of anger, insecurity, sadness, and fear may cause lasting damage to your relationships and leave you feeling raw, hurt, lonely, and abandoned. But it’s important for you to know that you are not alone, and you are so much more than a simple diagnosis.

Well, yeah.

This book is published by New Harbinger Publications, who also published The Buddha and The Borderline, The Borderline Personality Survival Guide, Coping with BPD, Don’t Let Your Emotions Run Your Life (which I keep typo-ing as …Ruin Your Life!), The Mindfulness Solution for Intense Emotions, and, um… Stop Walking On Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder.

The introduction says, “Seldom does an illness, medical or psychiatric, carry such intense stigma and deep shame that its name is whispered, or a euphemism coined, and its sufferers despised and even feared. Perhaps leprosy or syphilis or AIDS fits this category. Borderline personality disorder (BPD) is such an illness… It may actually be the most misunderstood psychiatric disorder of our age.”

Since the book makes very, very little note of how one’s social location might put one in greater proximity to (at greater risk of?) a diagnosis of BPD, makes no mention of the political dimensions of diagnosis and potential for recovery, and notes that more women than men are diagnosed with BPD but attempts no analysis of why, the comparisons to leprosy, syphilis, and especially AIDS seem completely out of place/context and written for mere shock value. Had the author taken the time to discuss, even very briefly, the three very different illness being compared to BPD, and their own political contexts and histories as well, it might have made more sense. Instead, the comparison feels incomplete and unnecessary.

Next, it is stated, “Perhaps the greatest instigators of BPD’s stigma have been psychiatrists, psychologists, and social workers. For many years, clinicians spoke and wrote in pejorative terms about patients diagnosed with the disorder as “the bane of my existence,” “a run for my money,” “exhausting,” or “treatment rejecting.” In fact, professionals have often declined to work with people diagnosed with BPD. This rejection by professionals, which has seemed at times almost phobic [I would name this as ableism, madphobia, and invalidation, says Maranda!], has spanned many decades. Patients with tendencies toward self-injury, suicide threats, and suicide attempts have been described in the literature as manipulative, treatment resistant, raging, or malignant. A casual connection between too much exposure to BPD patients and professional burnout has been commonly assumed.”

Yep. All true. And since borderlines know this, we often resist seeking treatment, or give up the long and arduous search for meaningful and competent care, because we too are burned out on the system; many of us have been traumatized, multiply traumatized, in our attempts to access care. And I totally remember searching online for BPD care in Toronto last year, and the first link that came up was for a fucking retreat in the Muskokas for professionals who were burned out specifically on borderlines.

Is patient burnout a thing? I’m naming it as a thing. Patient Burnout.

[image description: Maranda Elizabeth’s left hand reaching toward an enormous chunk of deep violet amethyst that extends beyond the frame of the photo. They have C-A-R-E tattooed on their knuckles, and a sprig of lavender with a tiny Ouija planchette tattooed on their thumb. Their fingernails are very long and painted in various shades of purple.]

I find myself wondering if continuing to create borderline communities would counteract the traumas of the medical / mental health industrial complex (sorry for using “industrial complex” language, which often feels too confusing and academic to me, but also feels like a useful umbrella term right now), and if the attitudes and assumptions of mental health professionals and social workers would change if they knew that borderline communities could even be a thing.

While most books about BPD take a moment to name a few negative media portrayals of borderlines, this book included Winona Ryder / Susanna Kaysen in Girl, Interrupted as a portrayal that has “nurtured the popular conception of those with BPD as evil, dangerous, and destructive or as selfish, manipulative, and non-compliant.” This surprised me as Girl, Interrupted, a classic now, is so radically different from everything that came before it, not to mention, written by somebody who recovered from BPD. (As a sidenote, I would love to see more writing about BPD that moves on from Girl, Interrupted (and more writing about Susanna Kaysen’s other books, which are wonderful!) and continues more complicated conversations, but I still find it being referenced again and again and again and it was indeed one of my favourite books and movies long before I was diagnosed).

While the book thankfully names borderlines as “experts” on our own conditions, I found it bizarre that although the focus seems to be on “reducing stigma” (ew), all but one of the essays featured are anonymous, which to some readers, may indicate shame and embarrassment and the need for secrecy after all. As someone who has been asked multiple times to write anonymously about mental illnesses, and always turned down the opportunity (because it felt icky and invalidating, also because I was expected to do this labour & vulnerability for free), I found this particularly disappointing. While the book contains twenty-four chapters by twenty-four different people, most of the voices sound lamentably similar, as if the editors took care in excising quirks and originality to create a collection that is woefully homogeneous.

The foreword (written by Brandon Marshall, a Black man and professional football player, of which I will write about in Part Two), introduction, and many of the essays name “stigma” again and again. I’ve said this a million times and I’ll keep saying it: I desperately wish folks would consider replacing the word stigma with ableism, saneism, madphobia, and oppression (I also read the words madist/madism recently in Changing Our Minds, a Jenny Diski essay in her book The Sixties, yet another example of mad languages and lineages that have not been passed on to us crazy folks often or effectively enough). A lot of change can happen when we choose to use more direct, even confrontational, words.

When I talk about resisting the sane gaze, creating borderline communities, and politicizing recovery, I make special note of excising the word “stigma” from our language in an effort to shift focus to the political dimensions of madness, illness, and recovery. To me, stigma seems to be a word that comes up when crazy people are writing for a non-crazy audience (something I’ve otherwise referred as the “sane gaze”), obscures the possibility of developing more complex ideas about madness, and the writing/work consistently sounds unbearably redundant and mediocre. It also assumes we were once sane, and have the secret of mental illness to “come out” about. I was never mistaken for sane, my mental illnesses were never a secret, they were visible since childhood, and I don’t relate to this common, popular narrative.

I took a lot of notes while reading Beyond Borderline, including a reminder to myself to write down how many pages I have to read before words like race, poverty, feminism, queerness, etc. are mentioned (or if they are). Race is not mentioned until page 70, in an essay written by a Mexican American student at Harvard. Lack of post-secondary education is mentioned on page 81, but no mention of class. Rape culture and victim-blaming are mentioned on page 93, but not in those words. Sexism, racism, and politics are mentioned very briefly on page 99 as one writer recounts struggling with her mental health through the 2008 U.S. election, and feminism is mentioned as she applies for an unpaid internship at a feminist small press (this essay, How to Build and Bust a Life (despite ableist language) was my favourite in the book, but it could have been sooo much better). Fibromyalgia, a common chronic pain/illness condition among folks with BPD &/or PTSD &/or complex-(p)TSD, is mentioned once.

Ableist metaphors were used casually throughout the book: “falling on deaf ears,” “crippling fear,” “emotional invalid,” “turned a blind eye,” etc. War metaphors are also used throughout the text; I’ve always cringed at least a little (and often a lot) with war metaphors being used to describe mental (or physical) illnesses, as it feels appropriative and lazy to me. I found the clichés and problematic metaphors throughout the essays disappointing and distracting – I wish for more borderlines (and editors! and publishers!) to be more cognizant and critical of language so we can move into more complex and interesting writing, as well as for more borderlines to understand ourselves as politically and emotionally aligned with all disabled people. (Let’s all learn how to a) create better metaphors, and b) quit using illnesses, disabilities, and wars as metaphors!)

In the Afterword, although references are made to the extremely limited availability of treatments for BPD, there’s no mention of capitalism or poverty. I don’t recall finding mentions of queerness, and certainly not transness.

It won’t surprise you to learn that throughout Beyond Borderline, recovery is often defined as going to school, getting a job, falling in love, getting married, having kids, “contributing to society.” Not doing these things, by the way, is one of the (multiple) reasons I’ve got “treatment-resistant” on my own medical records. “Non-compliant” often means not conforming to boring societal expectations under capitalism. Please take some time think about that.

I read compulsively and I read multiple books at once. I’ve already read more than 111 books in 2016. While I was reading Beyond Borderline, I was also reading The Protest Psychosis: How Schizophrenia Became a Black Disease by Jonathan M. Metzl.

The description of this book reads:

“The civil rights [and Black Power / Black liberation] era is largely remembered as a time of sit-ins, boycotts, and riots. But a very different civil rights history evolved at the Ionia State Hospital for the Criminally Insane in Ionia, Michigan. In The Protest Psychosis, psychiatrist and cultural critic Jonathan Metzl tells the shocking story of how schizophrenia became the diagnostic term overwhelmingly applied to African-American protesters at Ionia – for political reasons as well as clinical ones. Expertly sifting through a vast array of cultural documents, Metzl shows how associations between schizophrenia and blackness emerged during the tumultuous decades of the 1960’s and 1970’s – and he provides a cautionary tale of how anxieties about race continue to impact doctor-patient interactions in our seemingly postracial [sic] America.”

In The Protest Psychosis, the author documents how schizophrenia, once assigned to depressed and fatigued middle-class white housewives came to be associated with Black men protesting racism. As I read The Protest Psychosis, the whiteness – which is never named – of Beyond Borderline became more and more glaringly visible, and the lack of analysis became more and more disappointing. Because I know borderlines are so much more capable. Borderlines, we are capable of so much more than this.

Reading both of these books at the same time had me continuing to think about how different bodies are pathologized in different ways, and how resistance – to racism, to colonialism, to misogyny, to ableism – is almost always pathologized. I remember seeing a poster/flier being shared years ago that said something like, “ARE YOU DEPRESSED OR ANXIOUS? IT MUST BE CAPITALISM!” And I felt a little iffy about it for a long time because I felt it oversimplified so many experiences of madness, mental illnesses, and depression.

Another reason the poster/slogan didn’t feel so meaningful to me for quite some time was that I had unfortunately come to associate nearly every rant about depression and capitalism with white cis anti-psych (and green) anarchists who grew up with enough money to eat & live and who were thus able to romanticize poverty (and sometimes madness) as teens & adults, so I took this simple (but actually unendingly complex!) message as a personal affront to my own experiences with poverty, mental illnesses, ableism, trauma, chronic pain, and inaccessibility

But as my own desires and politics grow and develop and change, become more complicated, and the more I learn about and feel and experience the complexities and entanglements of endless branches of capitalism, like the prison-industrial-complex & police brutality & racism & poor-shaming etc etc etc, I find myself returning to this expression again and again, and finding both solace and a renewed energy to keep fighting.

I’ve also been noticing how most of my so-called negative thoughts begin when I mistake so many of my problems as personal and pathetic flaws and failings and fuck-ups, rather than as structural, systemic, and political. I’ve been continuing to learn how oppression, how responses to oppression, are medicalized and pathologized, and thinking more and more of illness itself as resistance.

Last March, when Black Lives Matter Toronto held #TentCity protests and sit-ins outside of Toronto Police Service Headquarters, as written about here, here, here, and elsewhere, I was bedbound but attending in spirit through Twitter. Although I’m having trouble finding images at the moment, there were photos of posters taped to walls and hydro poles with this message: “_________ in SOLIDARITY WITH #BLACKLIVESMATTER,” which folks in attendance could fill out with ink. The first thing I imagined / wished for was the possibility to be there with my Sharpie in one hand, my cane in the other, and to fill in the blanks. BORDERLINES IN SOLIDARITY WITH #BLACKLIVESMATTER. This became a mantra to me as I spent more time contemplating and trying to write about politicizing recovery, creating borderline-cultures, and using borderline-identity as a form of resistance, solidarity, and magic. (This mantra becomes yet more complicated as I acknowledge that some borderlines are Black, rendering my mantra imperfect; this is something I think about a lot, as well as the possibility that my diagnosis – if I were able to access one – would likely be different if I were not white, and that many Black folks and people of colour could have BPD but are more likely to be diagnosed with schizophrenia and other mental illnesses with “symptoms” of so-called paranoia and psychotic features. Black people in distress are more often than not treated much differently than white people in distress. It’s complicated!)

To return to Beyond Borderline, especially my disappointment on ableist and problematic language found throughout the book, I also wanted to highlight one of the most unfortunate – actually abhorrent – lines in the book, which is a reference to Stop Walking on Eggshells, a much-disliked yet seemingly-popular book about BPD, written by someone who’s also published a how-to-divorce-a-borderline book. In a chapter called Walking, the author begins her story with this: “Eggshells. That word makes me wince. It’s like my N-word. It hurts to hear it, so I try not to use it. Even within the boundaries of its literal definition, I abandon the two-syllabled plural noun in favor of roundabout circumlocutions.”

While she goes on to note her boredom with redundant analogies in BPD literature (me too!), I was so startled and upset when I read this line that I had to pause for some time to catch my breath. Why did the author feel compelled to compare the word “eggshells” to “the N-word”? Why did this comparison seem acceptable, and how did it get approved by multiple editors and publishers? Did anybody try to talk to the authors and editors about it? When I talk about the visible but unnamed whiteness of this book (and most BPD literature as a whole), this is perhaps the most egregious example. And while I appreciated seeing another borderline mention what a crummy book Stop Walking On Eggshells is, even though / especially because it’s published by the same people who published this collection, and I appreciated that another contributor to this book talked about being the yolk, not just the eggshells, this particular line was incredibly unnecessary, and really hindered my ability to find much of meaning or value in the words that followed.

I would be doing a disservice to each and every one of my readers, as well as mad and disabled and crazy and cripple communities, if I did not talk about whiteness, white privilege, and white supremacy. I know a lot of folks with BPD are not gonna feel happy or satisfied with my review-ish and my feelings about Beyond Borderline, but I believe all of this stuff needs to be discussed, critiqued, and unlearned. I know white folks who have used their mental illnesses, depression, and fatigue as excuses to not talk about white supremacy, to not talk about white privilege, to remove themselves from potentially (almost certainly!) uncomfortable conversations about privilege and oppression, as if being mad &/or disabled cancels out white privilege, and I can also admit to occasions when I have done these very same things myself. We are all learning. We have all been complicit in one another’s pains and traumas and we need to talk about it.

I am writing this in the hopes that if my fellow white borderline readers have not been listening, or not been listening enough, to people of colour, to Black folks including trans and cis women, enbies, and queers, that they will listen to me, a white non-binary borderline, and begin/continue to shift borderline into a deeper political context of solidarity.

I believe that political identities and movements etc. like Mad Pride, Black liberation and Black Lives Matter, Palestine solidarity, trans liberation, decolonization and reconciliation, Missing and Murdered Indigenous Women & Girls & Two-Spirit People, etc etc etc are all intertwined, interconnected, interrelated in ways that may yet be difficult to define but are necessary to feel and to acknowledge. The continuation of one form of injustice or invalidation depends upon the continuation of the others, and the abolition of one form of injustice or invalidation depends upon the abolition of the others… We can’t fully listen to one without listening to the others, support one without supporting the others, liberate one without liberating the others.

In The Protest Psychosis, the author notes how before the DSM, there was the Statistical Manual for the Use of Institution for the Insane, published in 1918. While some pushed for the institutionalization of schizophrenics, others recommended that clinicians treat them as if they were “underdeveloped children.” The same questions that were asked of “mental patients” to determine whether or not they should be locked up were the same questions asked of immigrants to decide whether or not they could cross the border. Madness, racism, and xenophobia, etc. are more deeply entwined than many of us are aware of.

Early descriptions of schizophrenia sound remarkably similar to current descriptions of borderline personality disorder, and reading these two books together made me wonder if, just as schizophrenia was rebranded (literally) as a “black protest disease,” if borderline personality disorder has subsequently been rebranded as a “white protest disease.” And quite often, the “feminine” equivalent to what was re-written as a “masculine” disease was/is, of course, hysteria. Mental health professionals, as well, have a long and absurd history of conflating social and political issues and feelings with psychiatric illnesses.

The official definitions of both of these states of madness both sound to me like bodies – minds – psyches responding to and resisting sexism, racism, trauma, and neglectful or abusive childhoods, as well as all forms of systemic oppression. Mental illnesses have historically been and continue to be diagnosed in people who refuse to or simply cannot conform to what white supremacist capitalist colonialist society wants of them/us. And the all-too-pervasive idea, which I’ve discussed here and elsewhere, that “recovery” means contributing to a capitalist society, literally kills people.

When I talk about mad lineages, the Black men and women who were institutionalized and diagnosed with schizophrenia are a part of my lineage; people of colour who were and are refused entry across borders are a part of my lineage; mad activists in my own city in the 60’s, 70’s, 80’s, 90’s, and now and onward and back through all time, are a part of my lineage; every woman diagnosed as hysterical is a part of my lineage; each person who has “borderline” written on their file without their knowledge is a part of my lineage; everybody burned in the witch trials is a part of my lineage; these lineages and histories and resistances to oppression reside within me, deep in my bones and psyche, refusing to be ignored.

If being beyond borderline means acting normal, getting a job, and having a conventional, monogamous relationship… If being beyond borderline means refusing to name racism, misogyny, capitalism, and white supremacy… If being beyond borderline means adhering to the most proper and sane and boring and unimaginative definitions of recovery… I don’t wanna go beyond borderline. I’ll stay right here.

Borderlineingly Yours,

P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!