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“ain’t no way to deny it, if it’s in your soul”

I recently co-authored a commentary (now in press; will post once all the copy-editing is done) on the deeply controversial and emotionally charged topic of violence, psychosis and the insanity plea. Short and geared toward a general audience, the piece is certainly more of an affective appeal than a well-developed position statement.  I have my reasons for this.

Theoretically and empirically unpacking the issues implicated in the insanity defense—the philosophical ethics of criminal responsibility and moral culpability, for example, the ‘actual’ long-term outcomes and comparative sentences of defendants ruled NGRI in different US states, the implications with respect to broader policy concerning the legal capacity of individuals with severe psychiatric disabilities—is, of course, urgent and important.

What drives me to write about this and related issues however (consent, capacity, coercion)—issues that I would, quite honestly, prefer to be in the position to ignore or overlook—is and always has been my undeniable, irrecusable, direct and deeply personal entanglements with them.

Sometimes these entanglements lead to the sort of “minor” reflections that anthropologist Paul Brodwin (2013) has termed ‘everyday ethics’:  “second thoughts and fleeting moments of self-doubt” regarding the play of power, coercion and paternalism in front-line (often para-professional) American psychiatry.   Other times—too often–they cut much deeper, hew closer to the bone; the contradictory simultaneity of my own social and ethical positionings overwhelms me.

….

The first time I found myself ‘summoned and charged,’ in a more formal sense, I was 19 or 20.  My mother was, at the time, living in another state in a small apartment (covered by federal Section 8 subsidies), and dependent on SSI for any and all food.  I was in college, working 20 hours a week on federal work-study and trying to avoid student loans; struggling to make ends meet in spite of a “full-tuition” academic scholarship.   It was winter;  I had saved up enough money to buy her a plane ticket to fly out and stay with me over break.  I carefully planned the route for her: a bus just a block from her apartment complex would take her to the airport.  She had to leave at such and such a time; pack lightly so that she could carry her bags.

Taking a step back, I had already known—we had known—for some time that she was barely eating.  The SSI funds she received, she had decided months earlier, were illegitimate, not only part of a conspiracy to discredit her but implicated in political conflicts on a global scale.  My brother, at that point my mother’s official “representative payee”—himself, at the time,  working for minimum wage in a group home for individuals with traumatic brain injuries–had consequently been sending the money to my aunt; the only family member living remotely close to our mother.  While closer than us, this aunt was nevertheless faced with a 3-4 hour drive (each way) spanning mountain passes that often closed during the winter months.  To the extent possible, she would leave packages of food on my mother’s doorstep every few weeks, denying that any SSI monies had been used to purchase them.

My mother, always keenly intelligent in spite of the beliefs and “thought disorder” that had, at this point, more or less completely overwhelmed her, did not buy it.

“I don’t care if I die,” she had announced, “though that’s not my goal.  I would eat if you sent me food.  If you loved me, you would send food. I have more moral courage than all of you.”  Let us call this Ethical Dilemma #1:  the money is there, unused , and you can barely make ends meet for yourself; what do you do?  What, here, is the individual’s ‘right to self-determination’ in light of complex intersubjective relationships and familial obligations?

To recap: I was a first-year undergraduate already qualifying for the highest levels of income-based financial aid; my brother, with only a high school diploma, was working a part-time service job at minimum wage, trying to save up enough to start attending community college the following year; my aunt, again with just a high school diploma, was working as a part time special ed aide in a rural school district (again, earning minimum wage or barely above).  [I repeat these facts in order to emphasize the real-world socioeconomic conditions by which the arguable majority of family members of individuals with serious psychiatric disabilities on SSI are so tangibly constrained.]

[Further context:]  If we turn the moral table, something that has never been easy for me, the situation looks something like this:  a few years earlier my mother was (finally) involuntarily hospitalized for the first time in decades for attempting to strong-arm my brother into a double suicide at a campground in rural Virginia.  They were both, at that point, homeless (I had been sent to live with relatives in upstate New York, where I was attending high school). Since then, my brother and I were frequent targets of profoundly delusional anger—we conspired against her, we were on occasion responsible for global atrocities, there was absolutely nothing about us, she often said, that she could “ever feel proud of.”

Earlier that fall, my brother and I had uncovered a home video of her interacting with us as small children; a video I suspect I’ve mentioned before.  There, behind the shaky lens, was a person, a mother, I could scarcely recognize and of whom, at that point in time, I had essentially no ‘native’ memories.  Sweet, ebullient, insecure;  apologizing that her kitchen was such a mess, proudly emphasizing my brother’s early prowess at the piano.  In retrospect, unbearably, painfully, kind.   I cried solidly for many nights afterward.   Let us call this Ethical Dilemma #2:  how to understand the person who once loved you exactly as a ‘real’ mother does,  who was once so kind and sweet-natured, but who,  because of psychosis, severe delusions, thought disorder, and so forth, subsequently turns into the sort of parent who would and did violate virtually every normative maternal mandate—physical abuse, psychological abuse, symbolic violence,  neglect.  In my brother’s case one might even speak of attempted filicide.

…..

The day my mother was supposed to arrive in Portland I waited—fruitlessly– at the airport.  She did not de-board the plane.  I called her: “I was too weak to walk to the bus stop,” she confessed, “I haven’t eaten in so long,.”  How much do you weigh?  “About 90 pounds. “  “Why didn’t you at least call me so I could order a taxi?  The ticket is non-refundable, how will I get you here now?…”

Ethical dilemma #3.  I could not have her death on my conscience; I called the local police.  My motivation, at the time, had nothing to do with a desire to “force” her to take antipsychotics, or engage with institutional psychiatry; it was much more simply a matter of keeping her alive.   “That is abuse,”  I was later told by a survivor activist, “you’re every bit as bad as the worst and most abusive psychiatrists; you have no right to call yourself an advocate.”

As it happened, the police officer who showed up at her apartment that day determined that she was not enough of an immanent threat to herself to warrant legal intervention.  Her life, that is, was not immediately in danger.  Subsequently, my aunt, who felt that things would be even worse for me if my mother realized that I was the one who had made the call, told her that she had.  My mother barely spoke to her for close to 5 years as a consequence.   Ethical Dilemma # 4:  Whether or not to let someone else “take the blame.” Ethical Dilemma #5: Whether or not to concede and contribute to an ever-expanding net of lies and deception, in a possibly futile attempt to not completely alienate someone living outside reason.

….

Recall that this was only the first of my more formal entanglements, at least as a legal adult.

Early this morning I received an email from my mother that read (verbatim):

I am thinking its a good thing to have had a brother, who killed himself. It makes one have loved.

Whereas I imagine you don’t,   …..don’t love. “

If only things were easier and clearer, if only theory, ethics, policy, could, in fact, guide us.  If only psychosis had no dark side, never endured, never forced us to make choices we would otherwise do anything to circumvent; hands tied, heads bowed in equally enduring, equally inescapable, supplication.

13 thoughts on ““ain’t no way to deny it, if it’s in your soul”

  1. Thank you for sharing this deeply personal story, Nev. What immediately strikes me is that this story is not just about ethical dilemmas, but about double and even triple binds. The binds placed on the sufferer of madness and her loved ones by the state and the surrounding culture, and the binds the sufferer lives within herself and places her loved ones in. One of the things that most strikes me about the phenomenology of much madness–psychosis or not–is its “no exit” quality. It is like a never-ending labyrinth of despair. Any turn within it simply re-enters or leads deeper within the labyrinth. You are right that within this labyrinth, there are no simple solutions or easy heroes. Any intervention will cause suffering, at least in the near-term, because suffering is the ground from which double and triple binds originate and which they reproduce. Perhaps the only way out is simply to refuse to internalize the terms of the binds–to recognize that their seeming omnipotence is in fact very fragile and takes a lot of work to maintain. With this realization, we are able to name and begin to undo the structural binds that oppress others. By living on different terms–recognizing the suffering that will inevitably cause–we restore hope to ourselves and others. And hope, of course, is a long-term thing. The structural changes in our society that produce so much human misery will likely take a very long time, but we can begin by internally rejecting the binds that those structures, as well as people living within them to a greater or lesser extent on their own terms, have tried to place us in.

    • Thank you, Natalie–very powerful observations. I suspect you’re right–that the only way “out” is to simply refuse to play by the (implicit/tacit but ideologically ‘fragile’) rules. For some reason this is a lot harder for me than it probably should be: affectively and psychologically, not intellectually….

      • It’s hard for me, too, Nev. I think the difficulty is a testament, in part, to our care for those, on macro and micro scales, who try to put us in those binds, and our commitment to solidarity with them, as well as to a certain kind of humility. It is very natural to seek affective harmony with our worlds, no matter how dysfunctional they are. It feels lonely to “play by different rules,” so to speak. Yet, as I have come to deeply believe, to live differently is not betrayal or abandonment but the greatest expression of loyalty and love. Love tends not to be reciprocated on the terms of binds, and it tends not to be reciprocated to those who live on other terms either. Perhaps that is the greatest double bind of all. And yet, it is worth it to change the terms, every painful step, so that love can be in the world freely (which is the only way it can be, I think), and do its work.

        I realize that love is not often brought into the discussion of psychopathology/social theory in academic settings, but the email you quoted from your mom testifies to how central it is to all of this–the need for love, the often hopeless search for it, the misrecognition of other things as love, the failed recognition of love that is right there. Love makes the first gesture; love is often unseen; love is patient and kind but firm and strong; love does the hard and uncomfortable things. Loving is scary and lonely and vulnerable. Love’s heart breaks again and again. Love works on its own terms and doesn’t justify itself, but is truly humble. Love is the only way to be free. Perhaps this is theological of me; I totally own that. :) Yet, it is the essence of healing, I think.

      • You sound so much like Derrida here, Natalie… :-) (I’m thinking mainly of his articulate of the gift as a free offering made with no expectation of return, outside ‘normative’ economies of exchange.)

  2. Hi Nev-
    I wish I had something profound or wise to say. I don’t. Mainly, I wanted you to know that I read this. I continue to be amazed by your clarity of thought – but not just of thought – of a kind of witness to the complexity and pain these situations entail.

  3. Pingback: “ain’t no way to deny it, if it’s in your soul” | Malingering Normal

  4. Hi Nev, I feel profoundly moved by your post and humbled by the clarity and lucidity with which you describe the awlful pain of such dilemmas. There is no doubting the failings of a system which fails to provide safety or refugee from the vulunerabilities and fragilities of psychosocial distress. It is one thing to rail against and fight for freedom from compulsive treatment as an ideal principle but real world dilemmas posed by utterly savage ruthlessly organised neoliberal capitalism’s failures to provide safety nets for people who get lost in mental torment. It makes me furious that a kind and safe alternative is not available when needed. It is the position of relatives which is rarely articulated so clearly because black and white dichotomies are easier to deal with cognitively. I feel upset at the judgement made by another activist at your decision which was the sanest, most loving alternative in an impossible situation. I am also struck by Natalie’s comments on love (true love rather than romantic fasination) which strongly resonate with me yet love is an academically and socially unfasionable concept. What a different world we would have if kindness and compassion were as validated as profit and ecomonic growth. I hope this does not sound detached from the pain of being trapped on the horns of impossible dilemmas that loving another in such a dark place you portray so vividly. What I want to do is salute your ability to survive -and articulate the impossible moral pain of being forced to action that is unpalatable. The system is failing and I think that is what is immoral. The philosophical challenge we as a user/survivor movement face is to face up to the complexities of how to create systems that support safety nets to hold people lost in mental torment.

    Psychiatry has a long history of being the fixer of social failures and seeking technological fixes for social/emotional oppression. I’m thinking here of how damaged many of us have been by psychiatry’s social control function, especially in ‘curing’ lesbian or gay love, pathologising young mothers trapped in poverty and patriarchical oppression, or losing (giving up to adoption) a child because of social/religious mores.

    I find communicating abstractly is even easier online than in real face to face presence, my way of coping with much of the unbearable pain life has thrown at me is to disassociate and intellectualise rather than be present. But I am getting better in real life which reminds me my poor dog is waiting for his morning walk while I try to type a reply to your honest post. Be well dear soul and have a lovely day today. :-)

    Liz

    • Liz– Thank you. And yes–issues of class, poverty, access to healthcare and intersectional marginalization are such a huge part of the problem… Hence issues involving treatment & the psychiatric system are really only one piece of a much larger net of social justice issues that (badly) need to be addressed.

  5. Pingback: Diagnosis, disease, illness | Mad In America

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