I wrote about my lived experience with schizophrenia, neuroethics, and the importance of first-person accounts of illness in research and practice in: “The Missing Subject in Schizophrenia” — for the The Neuroethics Blog @ Emory University.
I am thinking about what it would mean to think about BPD as a form of neurodiversity. This is not to overlook the negative features of this condition, but to strike a balance between deficits and what about this condition brings in terms of value. What could be gained from viewing BPD not through a medical model but through a disability lens? I don’t want to underemphasize the fact that psychological suffering occurs with BPD. It occurs for me (and it occurs for those close to me). It’s important to remember that there is no way to conceptualize this condition in a way that works for all purposes and all contexts. I am less interested in proposing “borderline pride” as the new or best or right way of looking at BPD and more interested in noticing how difficult it is to form a thought about borderline pride—how unthinkable it is under the existing conditions about how we understanding BPD.
What is borderline pride? Is is pride-in-being borderline? Is it pride-despite-being-borderline? Does BPD pride make sense in the way that Deaf pride does? Or is it non-sensical in the way that cancer pride might be? (As soon as I wrote that sentence, I googled “cancer pride” and discovered the Bald Is Beautiful Campaign). If cancer pride exists, it is even more difficult for me to understand why BPD pride is so unthinkable. Still, cancer pride and BPD pride tend to focus on pride-in-recovery or pride-in-survival, unlike autism pride or mad pride which foreground pride-in-alterity.
I would like to envision a form of BPD pride based in the disavowal of stigma. The fact that BPD pride is difficult to think—that it feels, in fact, unthinkable—is an index of the depth of the stigma, and therefore a marker of the necessity of BPD pride. One message of BPD pride might be, “I have it, I am not ashamed of myself for having it, and I feel compassion for and community with others who also self-identify as borderlines.” BPD pride might say, “It is normal to experience pain, suffering, illness, and setbacks. It is not a sign of monstrosity. It is not a sign of being a failed human being.”
In queer theory, the pride/shame binary has been rejected and what lies beyond is a more complex look at difference (can we handle the fact that people are radically different from each other?) and sameness (can we handle the fact that people are far more similar to each other than our categorical thought processes tend to reveal?). In the context of disability, those same questions about permission for radical difference and recognition of unmarked similarities apply.
I don’t think pride and shame are the endpoints of how I feel about my borderline experiences. They are, instead, the poles of a spectrum containing innumerable nuances. By entertaining the notion of BPD pride against all odds, we start to map the territory of our own ambivalence. We give ourselves somewhere to go, a place to begin a dialogue on coping that has implications stretching far beyond our lonely predicaments.
I think BPD pride is a thought worth thinking.
Price, Margaret. “The Bodymind Problem and the Possibilities of Pain.” Hypatia 30, no. 1 (2015): 268-284.
Following the call made by scholars like Andrea Nicki, Anna Mollow, and Elizabeth Donaldson for more attention to mental disability in feminist disability studies, Margaret Price offers a theory of bodyminds through a feminist disability and ethics of care framework. Price’s use of bodyminds is from Babette Rothschild’s work on trauma:
“According to this approach, because mental and physical processes not only affect each other but also give rise to each other—that is, because they tend to act as one, even though they are conventionally understood as two—it makes more sense to refer to them together, in a single term” (p. 269).
And then there’s crip politics:
Price aligns with both Alison Kafer’s imagining of crip politics as “an attempt to signal a belief in potentiality and flexibility, an effort to occupy a more ‘contestatory’ space that merges activist and academic work, as well as hope for coalition across disability categories” (pp. 15-16, quoted on p. 270) and Nirmala Erevelles’s notion of the body as “a sociopolitically constituted and material entity that emerges through both structural (power- and violence-laden) contexts and also individual (specific) experience” (p. 271). That is, a crip politics of bodyminds necessarily merges academic/intellectual/activist/political/personal while recognizing both how they emerge and are experienced structurally and individually.
Price turns to Rosemarie Garland-Thomson and her articulation of the misfit and misfitting as a way to think through a theory of the bodymind. Misfit “directions attention to ‘the co-constituting relationship between flesh and environment’” (p. 594 quoted on p. 271) and has both material (physically not fitting in a space) and metaphorical potential. The concept of misfit is useful in discussions of mental disability to “emphasize the way that such disabilities are not exactly ‘visible’ or ‘invisible,’ but intermittently apparent” (p. 272).
Price offers two examples. The first is stimming, which can be read differently to different people (i.e., as pathological, rude, soothing, or an expression of identity) but whether viewed positively or negatively (or ambiguously) does not fit into normative expectations. These different interpretations highlight “the shape-shifting nature of the misfit” because stimming is contingent upon “the affective response of those who observe and interpret it” (p. 272).
Her more complex, abstract example is two people in a room: one who wants to inflict pain on herself and one who wants to stop that person from pain. Price writes, “Both subjects are fully immersed in their own realities. And each one is occupying a reality that is real, important, and complete. Who is the misfit here?” (p. 273). It’s easy to determine the misfit when the affective value is bad, but what happens when it is less clear? What is “good” or “bad” in the situation of the person who wants to self-harm and the person who stops her?
What is the desirable action or outcome?
This is a difficult question because then we have to assess the behavior, which means asking: “Are some disabilities worse than others?” and then that leads to “Is disability sometimes bad?” (p. 273). And as Price (and FDS and DS scholars argue), those aren’t productive questions because disability is not inherently bad (but oppression based on it is) nor is it a competition. But then, how do we come to terms (as a field, as individuals) with impairment as something that involves pain—that’s sometimes just really and truly bad (p. 274)?
How do we develop theories of disability that more inclusively account for pain and chronic illness? Or, as Price asks, “What shall we do with pain?” (p. 274). Disability studies has historically rejected the idea that disability is undesirable, which raises the question(s): “To what degree does the turn toward desire in DS move too quickly past the question of undesirability? Of pain? Of, well, badness?” (p. 275). Because even though we (as a field, as individuals) want to celebrate difference, positioning difference in terms of desirability necessarily creates understandings of undesirability.
These questions require that we not only describe but evaluate. What it means not just to describe but to evaluate difference, Price returned to the example of the two people in the room. Instead of thinking about who is the misfit or what action is desirable, Price asks us to think about pain through the lens of a feminist disability studies ethics of care:
[C]are means moving together and being limited together. It means giving more when one has the ability to do so, and accepting help when that is needed. It does not mean knowing exactly what another’s pain feels like, but it does mean respecting each person’s pain as real and important. Finally, care must emerge between subjects considered to be equally valuable (which does not necessarily mean that both are operating from similar places of rationality), and it must be participatory in nature, that is, developed through the desires and needs of all participants. (p. 279)
But as Price argues, bodymind is both structural and individual, and this passage nearly brought me to tears as it hit me at the affective level. It hit me after a particular painful interaction with [redacted]. It hit me months after thinking deeply and carefully and not very carefully and manically about why for the first time in my life people were marking my non-normative behaviors as abusive.
It hit me hard as I’ve been trying to think through the possibilities (desirability?) of schizophrenia, depression and bpd and what it does for me as a person. I like to think it makes me more careful, more thoughtful, more aware. But then I come up against with the pain of it when I’m crying during Q&A at a conference or shaking in a dark corner of my closet in the middle of the night. Those actions don’t make sense to me together, but this—this concept of care and an understanding that these experiences are harmful but that they have and communicate meaning—makes sense to me.
* Price’s “phrase book” that she gave her partner when they first started dating is so relatable. The handwritten document contains phrases that almost always help in the midst of a crisis as well as the phrases that do not. I have had a hard time getting people to take seriously the “deadly serious” nature of this sort of thing.
After her breakdown in front of her partner and the unexpected reaction of ze got her thinking about “what it means to be treated with great kindness immediately after doing something usually considered bad and shameful” (p. 280).
She notes how she does not address two other tough questions/scenarios going forward:
- What if a person strikes out at others, rather than herself, during a meltdown or a break (This hits me hard too).
- What if the two people, Person A and Person B, inhabit different positions of power, especially those typically enacted through war?
She reminds us of what Robert McRuer said about crip theory, how it must “keep on turning” (p. 63 quoted on p. 280)—that it is never finished.
Price concludes by writing, “Being witnessed and cared for, even in the midst of unbearable pain, makes me think there may be some hope for all of my bodymind” (p. 280).
This article was exactly what I needed at the moment (as an individual) and—more broadly—what we need (as academics) for more inclusive theories of disability and (as humans) more reciprocal understandings of how we experience and share pain.
Having a complex mental health history sometimes feels like I’m carrying around some sort of secret. I am pretty open about having schizoaffective disorder, bipolar type—which I often just refer to as schizophrenia since everything about the boundaries of this are contested. While it’s true that schizophrenic symptoms are highly stigmatized in our society (along with bipolar disorder, depression, PTSD, etc.), I have another diagnosis that is perhaps more stigmatized than those disorders in many circles including among mental health professionals themselves. And this is why I do not write about being diagnosed with borderline personality disorder.
This is also why I haven’t read any of the popular texts on BPD. There are literally more resources that have been created and are available to family members and loved ones of individuals with Borderline Personality Disorder than there are resources for those of us who have been diagnosed and are living with it. Read the reviews of classic bestsellers such as Stop Walking on Eggshells: Taking Your Life Back When Someone You Care About Has Borderline Personality Disorder (implying that my loved ones have to “take their lives back” from me) and I Hate You, Don’t Leave Me: Understanding the Borderline Personality Disorder (with its totally non-stigmatizing cover art) and you, too, will likely come away with the impression that people with BPD are to be avoided at all costs. Many psychiatrists and therapists will not treat patients and clients with BPD, due to their reputation as “troublesome,” pathological liars who will stop at nothing to manipulate anyone and everyone in their lives.
In order to talk about BPD, an official description of the disorder is necessary. For this, I refer to the National Institute of Mental Health’s definitions of BPD. The NIMH page lists the DSM-V’s (DSM = Diagnostic and Statistical Manual of Mental Disorders, the psychiatric “bible” found on every psychiatrist’s bookshelf) official criteria for the diagnosis about half way down the page.
Borderline personality disorder (BPD) is a serious mental disorder marked by a pattern of ongoing instability in moods, behavior, self-image, and functioning. These experiences often result in impulsive actions and unstable relationships. A person with BPD may experience intense episodes of anger, depression, and anxiety that may last from only a few hours to days. Some people with BPD also have high rates of co-occurring mental disorders, such as mood disorders, anxiety disorders, and eating disorders, along with substance abuse, self-harm, suicidal thinking and behaviors, and suicide. While mental health experts now generally agree that the label “borderline personality disorder” is very misleading, a more accurate term does not exist yet. People with BPD may experience extreme mood swings and can display uncertainty about who they are. As a result, their interests and values can change rapidly. Other symptoms include:
Frantic efforts to avoid real or imagined abandonment
- A pattern of intense and unstable relationships with family, friends, and loved ones, often swinging from extreme closeness and love (idealization) to extreme dislike or anger (devaluation)
Distorted and unstable self-image or sense of self
Impulsive and often dangerous behaviors, such as spending sprees, unsafe sex, substance abuse, reckless driving, and binge eating
- Recurring suicidal behaviors or threats or self-harming behavior, such as cutting
- Intense and highly changeable moods, with each episode lasting from a few hours to a few days
- Chronic feelings of emptiness
- Inappropriate, intense anger or problems controlling anger
- Having stress-related paranoid thoughts
- Having severe dissociative symptoms, such as feeling cut off from oneself, observing oneself from outside the body,
- or losing touch with reality
A lot of BPD stigma stems from the fact that its symptoms aren’t as palatable or acceptable as people would like them to be. They exceed the limits of a lot of people’s so-called sympathy and compassion for mental illness. What’s absolutely certain though is that stigma does not help anyone with a mental illness; it especially does not help those prone to suicidal impulse or, as the NIMH puts it, “completion.”
BPD makes me more philosophical than any other diagnosis about what this disorder means about me. I spend a lot of time worrying about how I can separate myself from it. What parts of my personality are me as an individual and what parts are just the pathology? Are they one in the same? When you structure your identity around an illness, you are unable to resist asking yourself: who am I without it?
The more awareness I develop about BPD and myself, the more I practice mindfulness and DBT, the more I realize that the worst symptoms are in remission. I still find myself doing BPD-ish things in my current life, especially in relationships, but not at all to the degree that I had done in the past. I find that getting older helps (research actually shows that BPD symptoms tend to decrease with age so that’s something to look forward to). In the past, my urge to sabotage my relationships with others and, ultimately, myself stemmed from a desire to be heard and to feel respected and cared for. I wanted attention and love. For example, It’s humiliating to admit that I used to think that if I became sicker, others would take me seriously. So, I’d try to deteriorate my health in violent and dangerous ways—or I would lie about having an illness—in an effort to illicit sympathy and love from others, the people who already loved me. It was pure selfish spectacle and never once had the intended effect which was to prove (to me) that I was worthy of love. At the time, it made perfect sense to do this, but it ended up costing me many friendships, important relationships, and put unfair strain on the few who stuck around. As I age and learn more about myself and this disorder, I realize that the greatest thing I can do for myself is to care for myself as best I can. Acceptance and love are revolutionary acts. This is not easy. It’s hard to love yourself when you’re not even sure you like yourself. But prioritizing self-preservation over self-destruction has been my good first step.
As I glance down the barrel of academic deadline, I am trying to go somewhere with the splitting metaphor in schizophrenia as it relates to narratives of modern scientific objectivity, unity, progress, and purity. It’s very much a mess but one thing I’ve found is that this metaphor, for as much as it’s been dismissed in psychiatry and psychology circles, still has incredible currency in both professional literature and popular culture. It’s literally everywhere. On the covers of books, Schizophrenia Bulletin, professional and popular journals, mainstream news media, pharma ads, etc. It’s… interesting.
Jarman, Michelle, Monaghan, Leila, and Alison Quaggin Harkin (Editors). Barriers and Belonging: Personal Narratives of Disability. Philadelphia, PA: Temple University Press, 2017.
My review of this book is on Metapsychology Online Reviews.