What Do We Owe When a Shock Survivor Dies? – On the Death of Sue Clark-Wittenberg

16
1453

On August 7, 2015, prominent ECT survivor and antipsychiatry activist Sue Clark-Wittenberg died. That day, I sent the following message to members of Coalition Against Psychiatric Assault (of which Sue was one), also to my Facebook friends:

It is with profound sadness that I am writing to let everyone know that Sue Clark Wittenberg has just died, but hours ago . . . Everyone who knows anything about Sue knows that she has been an enormously important person in the community of people battling shock. A shock survivor since she was 17, Sue has fought against ECT for decades and decades, with fierce determination. She received an award from CAPA a few years ago for a lifetime of work combating psychiatry . . . May her memory be as a blessing. (personal correspondence)

A few hours after posting this, I began thinking about the loss of ECT survivor Leonard Roy Frank, that magnificent ECT warrior, famous for his activism and scholarship (e.g., Frank, 1975/1978), who likewise passed away this year. I was honoured to be one of those who memorialized Leonard. Then I found myself worrying who would memorialize Sue. Shortly, thereafter, to my relief, tributes on Facebook began pouring in.

That noted, in that moment of uncertainty, when I did not know whether or not people would rise to the occasion in response to Sue’s death, a curiously existential question came to me, which question, in part, motivated this article: What do we owe to shock survivors when they die? Whether they are extremely famous like Leonard, legendary but in more limited circles like Sue, or people leading comparatively obscure lives? Whether they were activists or folk who never became involved in a single social movement?  Whether they went on to do wonderful things like Sue or Leonard or simply went about their lives? What do we owe to each and every one of them?

One answer to this question which I would like to advance is that we owe them what we owe everyone who underwent an atrocity that is ongoing, that is being visited on others daily—doing something about that atrocity. Given, as shown by Breggin (2008) and Burstow (2015), shock is anything but a legitimate medical procedure, given that it is profoundly damaging, what we owe is doing everything in our power to rid the world of the “treatment” so that never again is it visited on anyone. Every time a survivor dies, it is minimally an opportune moment to renew our commitment and our pledge to both bring an end to this treatment and to build a world where brain-damaging people in the name of help would be unthinkable.

There is something else that we owe them as well, something of a more personal nature—and it is this that I will be honing in on in this article. We owe holding their experiences in our memory. Indeed we owe something of this ilk to everyone subjected to  ongoing atrocity, but the onus is all the more pressing here given that this “treatment” is precisely about the destruction of memory. More generally, we owe them taking very seriously the disjuncture that happened to them, however long ago—and all that this disjuncture points to. To be clear, the ethical imperative which I am referencing here is  of both a commemorative and witnessing nature for sure but likewise of a pedagogic nature. The point is that insofar as these stories can be used to conscience-raise, we help make them something beyond just the senseless tragedy which they otherwise are. A work of transformation, I would add, which the survivor takes upon themselves each and every time that they do us the courtesy of bearing testimony.

Which brings us to the Sue Clark electroshock story. The key questions taken up in this article are: What does Sue’s ECT story highlight? Exemplify? Teach us?

Sue’s Story and its Significance

Who was Sue Clark in the years before ECT? She was a very bright child, with a powerful instinct for survival.  She was also a child who had been subjected to ongoing abuse most of her life (see Burstow, 1994 and 2002, and Inquiry into Psychiatry, 2005).

Sue first ended up in a psychiatric institution as a teenager. How and why? Initially, she ran away from an abusive home, with that abuse at one point including sexual abuse. Now homeless, she began missing classes at school. She was soon summoned to speak to the school psychologist, who had concerns about her “absenteeism”. Upon hearing Sue’s story, the school psychologist observed that Sue needed help and suggested an appointment at the Royal Ottawa Hospital.

What can we learn from the story thus far? That at that time, minimally, there was insufficient support for abused children. What is also highlighted is the treacherous connection between school and psychiatry. Note that Sue did not have a “mental health problem”. Her “problem” was that she was being abused—and help in ending the abuse and creating safety—this was the kind of assistance that would have been useful. Instead the school psychologist began the process of redefining Sue’s problem as “mental” and turning her into a “mental patient”. What is highlighted here is at once the psychiatric transformation of social problems into personal diseases and the implication of schools in that transformation.

It was at this moment that Sue’s life as she knew it truly began to fall apart. One of the first acts of the institution was to create a “family meeting”. At the meeting, Sue courageously introduced the issue of the abuse. According to Sue, the family responded, “Oh no, we never abused Sue.” (see Burstow, 1994) Whereupon, the abuse as Sue had lived it was discounted, or put this another way, was turned into a “symptom”.

What truths about psychiatry’s mode of operating does the nature of the family meeting bring to light? That once a redefinition has occurred, the newly minted “psychiatric patient” has little credibility compared to everyone else. Indeed, the further at odds their story is with the ones of those around them, including those being identified as abusers, the more dire the mental illness that is likely to be assumed.

What happened to Sue after that? Having entered the Royal Ottawa voluntarily, she quickly found herself involuntary. States Sue, “Right away I was given heavy doses of tranquilizers. I had no coordination as I walked down the hall and had to cling to the walls.”(Inquiry into Psychiatry, 2015) In essence they drugged her into a stupor while refusing to let her go. All of which points to the brutality and the coercive of the “care” given long before ECT became part of her lived reality.

Upon being released, she went to live with her abusive family. Why? Because she had nowhere else to go and no one so much as mentioned a single resource that she might access—a reality which again points to the negligence of the “care” afforded the young.

More hospitalizations and more infringements of rights followed. Horrified by the daily infringement of her rights and understandably in despair over the turn her life had taken, one day while under lock and key at the Royal Ottawa, this increasingly desperate teenager tried to hang herself.

Obviously the question that any thinking person responsible for her care should have asked at this point was: Why did this youth resort to such a desperate measure? How are we failing this person? What this part of the story highlights is that questions of this nature are never asked. Instead, the institution continued to interpret what was happening through the frame which they had adopted from the start. To wit, her trying to kill herself, in their understanding, could mean only one thing—that her “mental disorder” was “deteriorating” and so more aggressive treatment was warranted. Whereupon, she was transferred to Brockville Psychiatric Hospital. And it is here where ECT entered in.

Once at Brockville, Sue was “informed” that she was going to be given ECT. This was a moment of absolute terror for her. She protested, stating that she feared what ECT would do to her. She was told that her worries were needless, that ECT is safe and effective— responses which, as we all know, highlight the misinformation which pervades the ECT industry (see Andre, 2009 and Burstow, 2015). What happened next?  Something that epitomizes at once power-over, indifference to people’s wishes, violence, and trauma. ECT was physically forced upon Sue, this I would add, despite the enormity and indeed transparency of her objection to it. In this regard, Sue tells us:

On the morning of my electroshock therapy, I yelled and screamed as loud as I could, I bit the staff and I kicked them . . . but no one came to my rescue, no one helped me . . .  Eventually the staff forced me into the ECT room . . .  I yelled to the staff that I did not want ECT . . . No one listened . . . It was a traumatizing experience that haunts me to this day. A rubber band was wrapped around my forehead and a rubber mallet put between my teeth. Then the psychiatrist turned on the shock machine and zapped me with electricity through the brain. (Inquiry Into Psychiatry, 2005)

While of course not all ECT administration involves people kicking and screaming in protest, what this story writes large is that everything about ECT is violent. That the entire experience is traumatizing. A reality which is all the more horrific when you factor in what allowed this to transpire in the first place—besides the avarice and the grandiosity of the ECT industry, a obvious distrust of youth, a dismissal of people’s words, rights, choices, a willful disregard for very real circumstances of people’s lives, an arrogance of massive proportion, and what minimally looks like callousness.

What has happened here? A young woman was abused at home. She was persuaded to seek help only to be imprisoned and otherwise abused by the so-called helping institution. Moreover, she was singled out for a experimental treatment that was already known to be brain-damaging (see Breggin, 1979).

Now people reading the literature on the efficacy of ECT with suicide might consider the choice of ECT appropriate in this instance. But here not only the senselessness of psychiatry but the groundlessness of official ECT claims are highlighted. Besides the fact that there was a simple solution to what was now seen as Sue’s “suicidality”—listening to her and stopping abusing her—the point is, as documented in Burstow (2015) and Breggin (2008) just as ECT has no efficacy in general, it has no efficacy whatever with “suicide”. That said, insofar as we are trying to figure out what the story so far has to teach us, there is one additional dimension to factor in, albeit one less obvious.

Step back and look at what is happening at this juncture and what led up to it. The adult male is forcing ECT on the female youth. This is adultism and indeed child abuse at the extreme. What is perhaps less obvious to some, though, it is also sexism. The woman’s story, significantly, is disbelieved. It is assumed that “the woman” needs ECT. And, note, the statistics on gender are clear: Throughout the entire history of shock, two to three times as many as women as men receive ECT irrespective of whether or not they are deemed “suicidal”. For a possible explanation of why, I would draw attention to this historical statement by shock promoter Abraham Myerson:

I believe there have to be organic changes or organic disturbances in the physiology of the brain for the cure to take place.  These people have for the time being at any rate more intelligence than they can handle . . . and the reduction of intelligence is an important factor in the curative process. (quoted from Breggin, 1979, pp. 142-143)

Given the statistics, it is clear that the people covered by Myerson’s term “these people” are largely women, and that on some level, the reduction of women’s intelligence is being deemed acceptable, and beyond that, desirable.

To make a more general statement about gender here (though this part is not so clear), Sue might not have been abused to this extent had she been male—certainly, was less likely to be sexually abused, given what we know of sexual abuse. Had she been abused to this extent, she was less likely have landed in a psychiatric facility. And had she landed in psychiatric facility—and here the statistics are irrefutable—she would have been far less likely to be subjected to ECT. What is relevant in this last regard, throughout the history of electroshock, irrespective of diagnosis, women have received ECT two to three times as often as men (for an example of a current statistic, see Weitz, 2009).

How many “treatments” did Sue end up having? Five. All against her wishes. All brutal. Why so few? Because a physical “complication” entered in, forcing them to stop.

What happened after that highlights additional realities about shock. From that period hence, Sue was someone who suffered from major memory and cognitive impairment, The hospital had done its “job”, and now she was forced to live her life with the consequences. Which for all intents and purposes boils down to this: Whatever her original dreams may have been—becoming a philosopher, having a regular job—thanks to a purported “safe and effective treatment”, all such options were now nullified.

And here one further fundamental truth about ECT is highlighted—how little it takes for massive damage to happen. Sue, note, had five treatments only—a very low number.  While ECT advocates sometimes suggest that trying a few treatments could not hurt—the consequences for Sue, as for legions of others, demonstrate otherwise.

The point is no matter how many shock are given or what type of shock is used, the memory loss can be enormous. Nor does it self-correct. The memory loss is not, that is, as promoters like Fink (1979 and 2009) are so fond of claiming, minor and transient.

Flash forward: For the rest of her life, Sue had to take notes all day long just to keep track of what was happening. “I’ll be talking to you today,” she stated in my video, “and tomorrow, it’ll be hard for me to recall . . . our conversation.” (Burstow, 1994).  She further stated 11 years later:

I have a difficult time remembering things from hour to hour, let alone from day to day. I forget to mark things down in my date book and I have forgotten appointments, meetings, trips, conferences, and the list goes on. People come up to me to this day and say, “Do you remember me—and I don’t know who they are. I can’t remember some of my neighbours’ names who I see on a daily basis . . . You can’t get a job when you can’t remember. You can’t go to school to get a good education if you can’t remember anything . . . Marking things down doesn’t even help me much for I forget where I wrote the things down. (Inquiry into Psychiatry, 2005)

A reality, I would add, which not only points to the damaging nature of this treatment—which it surely does—but once again points to the gender dynamic. In this regard, Sackeim et al. (2007) conducted the large study in ECT history and they established at a level of statistical significance that women administered ECT become more cognitively impaired that men, with inability to recall details of their lives particularly pronounced.

In summary, what Sue’s story reveals and reveals powerfully is the damaging nature of ECT particularly and psychiatry in general, psychiatry as an inherently oppressive and inherently dishonest institution, the foundationlessness of ECT as a “treatment”; the destruction of self that is part and parcel of ECT; psychiatry’s erasure of the social nature of people’s problems; and the dearth of real help for people in difficult predicaments. It likewise sheds light on the degree of social buy-in into psychiatry, with psychiatry’s cooptation of our educational system especially highlighted. And last but hardly least, it sheds light on the role played by sexism and ageism.

That said, what can learn from Sue’s life hardly stops here. Sue’s life likewise offers us a glimpse into a very different reality. And I could not end this article without also focusing in on it. The damage done to Sue was horrific and beyond dispute. The point, however, is, as philosopher Jean-Paul Sartre (1943/1956) put it decades ago, we can always make something of what has been made of us—and indeed Sue did—and did so brilliantly and with panache.

Albeit while persistently having to take notes all day long—and to be clear, these  dire effects never subsided—after consulting with a few of us when in her early 20s, Sue went on to become a fearless antipsychiatry activist and one of the world’s foremost advocates against ECT. In the end, as those of us who have had the privilege of knowing this remarkable woman are well aware, Sue led a highly meaningful live—a life of commitment, humanity, generosity, and integrity—and in the process, besides accomplishing much, she became a critical part of the social justice landscape and an inspiration to those around her. She demonstrated against ECT tirelessly. She meticulously highlighted what the research actually shows. She created numerous myth-fact sheets. She was co-founder along with her husband Steve of the enormously important International Campaign to Ban Electroshock (ICBE) and she managed its website (see https://intcamp.wordpress.com/). She wrote poems about ECT. She created and disseminated petitions. She networked with other activists and with legislators and scholars across the world. She made deputations. And she created her own whistle blower hotline.

And whenever a hearing was happening, a video being made, there was Sue offering thrillingly frank testimony, never missing an opportunity to draw on her own experience to expose and teach. She also pointed the way, not only insisting on the importance of ending ECT but also of targeting the state.

In this last regard, to end this article the only way that I could imagine it ending, with a quote from the fearless, the outspoken Sue Clark-Wittenberg—here is Sue at her quintessential best, mincing no words, and announcing to everyone that ECT is torture in which the State itself is complicit:

All the therapy in the world is not going to erase the scars of being dragged into a room, having a band on your head, and having your brains fried. People say there’s no torture in Canada. That’s pure bullshit.  And excuse my language. There is torture being paid for by the Ministry of Health. (quoted from Burstow, 1994)

In the end, what words better than her own to show who this remarkable woman was?  And what words better than hers to commemorate her?

(for this and other related articles, see http://www.bizomadness.blogspot.ca).

* * * * *

References:

Andre, L. (2009). Doctors of deception. New Brunswick, New Jersey: Rutgers University Press.

Breggin, P. (1979). Electroshock: It’s brain-disabling effects. New York: Springer.

Breggin, P. (2008). Brain-damaging treatments in psychiatry. New York: Springer.

Burstow, B. (2015). Psychiatry and the business of madness: An ethical and epistemological accounting. New York: Palgrave Macmillan.

Burstow, B. (1994). When women end up in those horrible places. Video. Burstow: Toronto.

Fink, M. (1979). Convulsive therapy. New York: Raven.

Fink, M. (2009). Electroconvulsive therapy. New York: Oxford University Press.

Frank, L. (1975/1978). The history of shock treatment. San Francisco: Network Against Psychiatric Assault.

Inquiry into Psychiatry (2005). Retrieved August 9 2015 from https://coalitionagainstpsychiatricassault.wordpress.com/articles/personal-narratives/

Sackeim, H. et al. (2007). The cognitive effects of electroconvulsive therapy in community settings. Neuropsychopharmacology, 32, 244-255.

Sartre, J-P (1943/1956) Being and nothingness (Hazel Barnes, Trans.) New York: Pocket Books.

Weitz, D. (2009). ECT statistics 2008. Unpublished statistics released under Freedom of Information. Austin.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

16 COMMENTS

  1. Bonnie,
    What an extraordinary tribute to Sue. Powerful and cutting. I know others will also look for Sue and I am still in disbelief that I will not hear her, to keep me focused and on track, to fuel my anger, to be a support. Sue was not only a pillar in the movement, she was a part of my support network and I really am beside myself, with a feeling of loss. I am so glad that she spoke out as often as she did and hope that her work inspires others to continue.

    Thank you for writing this, Bonnie.

    In loving memory of Sue Clark-Wittenberg, Sue talking about her own experiences: https://vimeo.com/laurentenney/in-loving-memory-of-sue-clark-wittenberg

    Report comment

  2. As one who unnecessarily received ECT because of drug withdrawal, I honestly believe our focus should be on psych drug harm to a much greater degree than banning ECT. This is not to endorse ECT by any means and there are probably harms not yet identified, but there just isn’t any comparison to the degree of suffering I’ve experienced from psych drugs than the 11 treatments of ECT I received. I guess I’m a Healy-ite on this.

    Report comment

    • Maybe you’re one of the lucky ones who has not ended up not remembering his childhood or having to take notes about every little thing because you can’t make new memories. Or one who died early because of electricity induce brain trauma ending up in ministrokes and increasing a chance of epilepsy and early death. It’s like trying to figure out – which one you prefer lung cancer or kidney failure. How about none?

      Report comment

    • It is interesting that when David Healy talks about ECT he produces the exact same pseudoscience reasoning he deplores in those who support psychotropic drugs. Confirmation bias, True Believer Syndrome and denial as a defense of Cognitive Dissonance. I must point out that when one bad thing thing is worse than another, it just means that there are two bad things, not that the lesser evil is no longer an evil.
      Healy also points out that drug harm is far more common than ECT harm (which he also denies). Does this mean that we should judge damage by numbers? Let’s look at an analogy: sexual abuse in children is less common than physical abuse which is less common than emotional abuse. So sexual abuse goes onto the back burner while we tackle the greater numbers?
      In asking what we owe the warriors like Sue and Leonard, I suggest a practical campaign, in their name, perhaps “The Sue Clark-Wittenberg/Leonard Frank Foundation” dedicated to raising funds to abolish ECT. If a million ECT survivors and/or their families send $1, that is a million dollars. This is the sort of money that’s needed to pay for MRI scans and neuropsychological tests that expose the damage in the living. Also, when an ECT survivor dies, from any cause, at any age, the foundation would support the family in its demands for an autopsy of their brain. The evidence so graphically seen in Hartelius’ cats in 1952 would be proved in 2016 in humans.
      In doing this we could build a body of PROOF of the damage that is so glibly denied by the psychiatric establishment.
      Because ECT damage can now be seen in scans in many cases, psychiatry has mounted a series of studies that show definite `changes’ in the brain following ECT but they are attempting to claim that this is a GOOD thing, that too many connections between the frontal lobes and the rest of the brain is a cause of depression (see Moniz 1938 AND Perrin 2012) – (and `schizophrenia’ & `mania’ & catatonia, too?). They are quick on their feet when $5 billion a year is threatened. This campaign must be exposed before this becomes folklore.
      Since we are not getting past the current PR campaign (I know a press release when I see one) lording the benefits of ECT as the “best treatment available”, the “gold standard of treatment for depression”, by presenting the plethora of science that disagrees, we need another strategy. Maybe straight physical facts, in large indisputable numbers, measurable by existing science is one.

      Report comment

  3. Thank you Bonnie for ‘remembering’ Sue.

    Greg, I also unnecessarily received forced ECT because no one recognized benzodiazepine withdrawal – benzodiazepines I took at a time of caregiver stress, burnout and insomnia. I had no history of depression.

    The cascade of drugs given for benzodiazepine withdrawal , led to what was referred to as ‘dementia, agitated depression, and psychotic depression’. 35 drugs, 25 rounds of bilateral ECT – all in 8 months. Horrific. Thanks to ECT, I have no memory of that time. I do have notes, however. What I experience on a daily basis 12 years post ECT is even more horrific. My mind has been destroyed. I have loss of 20-30 years memory and I have frequent memory blanks and periods of helpless overwhelm when I dare think about what was done to me in the name of medicine.. The post-ECT spontaneous seizures I had for several years have stopped.

    I appreciate Healy’s work on psych drug harm, and even promote his webite RxISK – but he seems oblivious the harm caused by ECT – and his Shock co-author Ed Shorter needs to be muzzled for promoting ECT for children, teens and seniors.

    Report comment

  4. Thank you for this post. Usually, those who are victimized by psychiatry die and nobody cares. I chose my screen name because yeah, I survived…2 involuntary rounds of heavy shock before age 25. The first one was done while I was suffering an OD. I didn’t find out about the “treatment” until I had to get a brain scan a couple years later. Awesome.

    Anyway, I think it was Szasz who said that psychiatry is a human rights abuse. Its not a couple bad apples; its the “profession” as a whole. I personally think that electroshock and psychosurgery reveal what psychiatry is really about…destroying minds, destroying lives, making people “more manageable.”

    Thanks again for this post. She was a wonderful woman, and I think its important that her life and her death are noted, that something is said.

    Report comment

  5. I was searching Google news for Antipsychiatry, something I do quite frequently, when this post came up on top.

    First thought: Horrible!

    Although I had not met Sue in person, we were Facebook friends, and I had had a few interactions with her online, chiefly, in regard to to an episode or two of the Talk with Tenney radio show. I was well aware of her website, and the kind of example that it laid for other survivors. I was encouraged by the fact that she was even out there, and so I found her example inspiring before any such interaction had ever occurred.

    Following the loss of Leonard, this is indeed a terrible loss. It is not only a loss to me, it is a loss to our movement. I’m always wondering how we are going to recover from such losses, particularly in these perilous times. I don’t think psychiatric oppression is anywhere near to being on the wane, I just think that it finds more subtle ways of expressing itself all the time, and some people do get duped. This is why it is so important that we reach a whole new generation. It is not going to stop without a lot of struggle, and it’s up to us to reach those who might be able to help with this matter and, ultimately, effect change.

    Thank you Bonnie for all that you do, and particularly for this post. There is definitely a great need for just such a tribute, and you are there, and up for it. Again, thanks. Many thanks.

    Report comment

  6. “I believe there have to be organic changes or organic disturbances in the physiology of the brain for the cure to take place. These people have for the time being at any rate more intelligence than they can handle . . . and the reduction of intelligence is an important factor in the curative process.”

    That is nothing short of amazing. The brazenness of this statement…
    ECT should be forbidden as a form of torture and mutilation.

    Report comment

    • At the very beginning of all the major psychiatric “treatments” you hear words this awful–then the public stopped buying that brain-damaging people was a good thing–and then the discourse dramatically changed. But yes, it was this brazen, and such words stand as a clear indication of why such treatments are taken up.

      Report comment

LEAVE A REPLY