The British Journal of Social Work, Volume 53, Issue 3, April 2023, Pages 1285–1302, https://doi.org/10.1093/bjsw/bcac220
Abstract
This article aims to shed light on cognitive disabilities after electroconvulsive therapy (ECT) from an expert-by-experience perspective. It illuminates the living conditions that may follow, with a particular focus on epistemic injustice, societal attitudes, narration and recovery. Since personal narratives about ECT are scant, an autoethnographic method was used through which I weave together my own experiences of ECT and the need for support from, for example, social services, with research in various nearby areas.
These experiences were then placed in a wider psycho-social context. Three themes emerged when analysing own experiences of ECT, revealing both risks and important aspects of managing side effects such as cognitive disabilities: (i) At the social services office; (ii) Alienation in society; and (iii) Excerpt from a friendly conversation. Subjective experiences may broaden the understanding of a certain phenomenon which calls for greater (societal) knowledge regarding cognitive disabilities after ECT.
It also emphasises the importance of different professionals, including social workers and psychiatric staff, working to promote recovery, legitimise users’ narratives and not seeing disabilities as given obstacles in everyday life.
Issue Section:
Preface
For nearly two decades, psychiatric inpatient care was a recurring element and ontological starting point of my existence. Due to pronounced mental suffering, I was generally admitted between one to three times a year. Initially, institutional life included hierarchical structures and reduced room for maneuver, but also brought with it an adaptation to the biomedical discourse ‘explaining’ the emergence of mental health problems. During a half-year hospitalization in 2007, six ECT treatments were planned, followed by an evaluation of possible memory disabilities. I vaguely recall the sandpaper-dry mouth caused by the atropine that was injected before they put me to sleep, how my muscles ached and that the world seemed unrealistically dizzying afterwards. It slammed around me, bowls had to be washed clean and beds prepared for the next batch of patients. But among those who waited, there was silence and fear—some of them did no longer care what would happen. Every time I was driven down to the ECT ward, a man rolled after me on a stretcher similar to mine, and it sometimes felt like we were going to face death together. Later, when wandering the streets of Stockholm, I struggled to orient myself, to navigate in the subway, regain a sense of place, remember experiences and the names of my friends. I tried to explain to different authorities what it was like to be in a new world without logic, common thread or connection to anything in my social sphere. I told them that my memory did not return as it was explained in the clumsy piece of paper I was given when they enrolled me. However, they attributed the forgetfulness on another psychiatric problem, or indicated that I was simply exaggerating—my narrative did not fit into an established discourse and was thus silenced.
Introduction
Using electro-convulsive therapy (ECT) to trigger generalised seizures was introduced in 1938, and has since been a psychiatric treatment method whereby medical staff, using electrodes placed on the patient’s temple/temples transmit an electrical charge with the intention of ameliorating mental health conditions such as severe depression or schizophrenia (Endler, 1988).
A treatment series usually includes between six and twelve sessions spread over two to three times a week. With the development of psychotropic drugs in the 1960s and in combination with the associated stigma, ECT fell into disrepute until the 1970s. However, in contrast to several states in the USA, Germany, the Netherlands and Italy where ECT is used restrictively (Buccelli et al., 2016), ECT has received a new impetus in the Anglo-Saxon world and the Nordic countries (Benbow and Bolwig, 2009).
In Sweden, the number of ECT treatments are increasing although it is only partially understood how ECT works. Yet, people sometimes report being helped by ECT and this article is not written to challenge them. However, there is another group whose descriptions of severe side effects are rarely noticed, perhaps because they are in sharp contrast to the positive crowd.
Cognitive disabilities and retrograde amnesia (inability to recall existing memories) after ECT were earlier considered mild and non-permanent conditions, but more studies are paying attention to users’ long-term memory disorders (Philpot et al., 2004; Seniuk, 2018). Notwithstanding, these experiences are often scrutinised with scepticism by clinicians which may imply a barrier to social and personal recovery.
Since people testify about side effects that seriously complicate and limit their quality of (social) life, the socially and epistemically honourable approach would be to validate these experiences rather than dismissing them as mad or less knowledgeable. Within this context, users’ narratives need to be legitimised (cf. Polkinghorne, 1996) in order to optimise social inclusion (Davidson, 2016), hope (Leamy et al., 2011) and counteract stigma (Goffman, 1963) as well as to increase general understanding about this relatively voiceless population.
Disabilities, ‘sanism’ and ‘crip’
Whether talking about physical, mental, intellectual or acquired disabilities, defining them is intimately linked to the idea of the ‘normal’. Additionally, it also incorporates a wide arsenal of attitudes and preconceptions where most of us have an idea about a certain target group, what positions they have and/or are given and how ‘we’ talk about ‘them’. Associations between disability and an incomplete life are relatively common which, according to Watson (2002), is in strong parity with how disabled people summarise their everyday lives, where the disability has become an accepted part of their ontological beings.
Linked to this approach, Foucault (1973) points to the ability to distinguish the normal from the abnormal and that professionals—social workers, doctors, psychologists—have the power to label what does not fit. This draws parallels to the concept of ‘misfit’ (Garland Thomson, 2011) where disharmonies arise in relation to others.
Although Garland Thomson highlights the physical obstacles, I argue that misfit is applicable to overall disabilities as it emphasises the normal versus the non-normal. Furthermore, Foucault (1973) also addresses the term ‘gaze’ which has been popularised in different societal contexts and therefore transformed into an assessment instrument to use when analysing disabled people.
I suggest that this gaze activates both social constructionism and citizens, who are given the position as observers and thus superiority in a hierarchical social system characterised by amateurish labelling of individuals who, in various ways, do not behave or look as expected. This points to societal attitudes where rooted (social) notions of ‘madness’ (Foucault, 2009) are constructed and discourses are ongoing.
In all strata of society, there are conversations about ‘mad people’, which touches on and in different ways contributes to the production of ‘sanism’ (Poole et al., 2012), a concept derived from a discriminatory approach linked to manifest prejudices about mental health problems.
Stemming from the discourse on ‘normality’, there is a general expectation that a body should look and function in a certain way. This is one of the starting points in ‘crip theory’ (McRuer, 2006), which is connoted positively as in the case, for example, with ‘Black Power’ (Tyler, 2018). According to McRuer (2006), ‘crip theory emerges from cultural studies tradition that question the order of things, considering how and why it is constructed and naturalised; how it is embedded in complex economic, social and cultural relations and how they might be changed’ (p. 2).
From this, the concept of ‘crip time’ is also actualised where Kafer (2013) defines it as a reverse logic—‘rather than bend the bodies and minds to meet the clock, crip time bends the clock to meet the bodies and minds’ (p. 27). I propose that this view may be applied to memory disabilities, even though the theoretical approach originally emanates from physical disabilities.
What crip theory contributes to in this context is to generally question normative assumptions about time (McRuer, 2006) and I would argue that this also actualises different ways to think about time and how we position ourselves in relation to it. Linked to memory disabilities, this is often about being given the opportunity to have time to recognise people, to look for knowledge, find the words etc., which challenges our comprehension about normative time and the idea of direct feedback on, for example, a question or a statement (cf. Pierre, 2015).
To speak of ‘crip time’ is to demand the right to temporality and the discourse actualises a desire to live a life based on individual needs. In an effort to (better) understand how disability is created, I would argue that it is also adequate to link cognitive disabilities after ECT to the social model. Shakespeare (2010) is one of the spokespersons for disability policy (cf. Beresford, 2002) and highlights the concept of identity in disability studies.
Shakespeare emphasises that disabilities not necessarily are one’s personal fate, but that supporting individual development, citizenship and functional alternative identities is crucial. Here, the municipalities have responsibility for individuals’ opportunity to achieve a life ‘like others’ (the norm) where employment and social life may be understood as fundamental factors and promises based on participation in society (ICF, 2003).
I would argue, however, that it becomes problematic to refer to individuals ‘like others’, as it inevitably categorises people as well as manifests the norm as the obvious way of living. Instead of being presented with these above-mentioned promises, people with memory disabilities often end up in discussions around unemployment, loss of income, a limited social network and low self-esteem with isolation, loneliness and loss of recovery and identity as a result.
Epistemic injustice and the struggle for interpretative precedence
Due to the ECT, I experienced situations where my narrative was not taken seriously by professionals, which contributed to what Fricker (2007; cf. Newbigging and Ridley, 2018) entitles ‘epistemic injustice’. Fricker describes this as a social and collective knowledge vacuum which, for me, meant that I was not given the opportunity to conceptualise my own experiences due to lack of comprehensible notions that could have increased the understanding of these experiences.
With this vacuum followed a series of events that had immense consequences for my everyday life—above all lack of contact with the outside world, loss of adequate social support and rehabilitation efforts and epistemic violations within the care apparatus and the field of social work. A hierarchical truth was revealed—according to the psychiatric ‘expertise’, my memory disorders were experienced due to the depression itself, sedatives, me being fragile, stress or a number of other phenomena.
Since I was suddenly being viewed merely as a psychiatric patient, I was considered unable to decide what type of forgetfulness I was experiencing, namely a profound and personality-changing oblivion rather than having forgotten the car keys or a telephone number. Instead, I spoke in terms of not remembering my family, my home, my immediate surroundings, my earlier education or my closest friends—all significant social parameters for human life.
This interpretive precedence made by the care and support system had major consequences on how my life was shaped, which is why this article is formed as an autoethnographic depiction exploring my experiences of ECT.
Autoethnography and reflexivity as research methods
Autoethnography is described as a theoretical, methodological and practical approach in qualitative methods where the personal narratives are placed in a social context (Reed-Danahay, 1997). The knowledge claims made through autoethnographic research promote what Adams et al. (2015) call ‘epistemology from the inside perspective’ as it seeks to reach a knowledge that had been difficult, or impossible, to extract in other ways. By combining ethnography, biography and self-analysis, the autoethnographic approach contributes to expanding the understanding of subjectivity (Fox, 2021).
Thus, as a method, autoethnography is both process and product. Whilst also striving for social justice (Adams et al., 2015), it is considered to promote ethical debates with the help of reflexive elements. In the autoethnographic setting, the data are both internal (e.g., memories and reflections) and external (e.g., notes and previous literature and research) which are intimately interwoven within a larger cultural context (Frankhouser and Defenbaugh, 2017).
Through this method, I gain greater aesthetic freedom in giving a full and captivating meaning to interpersonal experiences. Applying an autoethnographic lens to memory loss due to ECT enables a deeper understanding of the lived experience and since it focuses on the individual narrative, its goal is described as ‘to tell a story in a way that reveals the self as a central character with rich emotional evocation that serves to ground the story being told’ (Anderson and Glass-Coffin, 2016, p. 79).
With this in mind, the autoethnographic method seemed relevant in this endeavour and in this article, memories from and meetings with certain key people from various institutions are woven together with diary and journal entries from the period between 2007–2009 as well as theoretical thinking linked to my academic journey during the years of 2019–2021 when I went from being a master’s student to PhD student in social work.
Also, since I myself research recovery from mental health problems (Moberg et al., 2022), aspects of recovery (Leamy et al., 2011; Le Boutillier et al., 2011; Tew et al., 2012) become important elements when reasoning about my own process. However, when describing this self-experienced journey, it requires reflexivity and the ability for philosophical reasoning (Bourdieu and Wacquant, 1992). If we as researchers want to relate reflexively to our own analyses, we must strive for transparency when the chaos of the lived life is structured and thus forms a, seemingly, logical course of events.
This procedure is what Bourdieu calls ‘the biographical illusion’ which also lays the foundation for reflexive sociology. Here, Bourdieu highlights ‘erroneous’ notions that life has a somewhat fixed starting point where meaningful markers are highlighted, but which at the same time do not necessarily describe the actual order of a course of events (Bourdieu and Wacquant, 1992). Having said that, my ambition has been to create something autoethnographic coherent of events marked by overarching fragments and confusion.
Ethics in autoethnography
In terms of research ethics, autoethnography must also adhere to the same ethical guidelines as other research. However, there are certain aspects that are particularly relevant in studies where autoethnography is used (Edwards, 2021) which touches on the unique position that the researcher herself is to be regarded as a research person who should thus also be given ethical consideration.
One could, like Edwards, argue that in-depth exploration risks affecting one’s mental health and that this process may increase the feeling of experiences being somewhat unfinished. Here, I want to point to an opposite, that is, an opportunity to summarise one’s story and put it in a larger context for closure. Thus, the autoethnographic approach enables the opportunity to voice experiences based on rich data about the self, contextualised in experience and history, that may not be accessed otherwise (Lapadat, 2017).
In addition to self-ethics, and by acknowledging bonds to others (Ellis, 2007), relational ethics has also been taken into consideration when writing about supporting characters (a social secretary, a doctor and a close friend). Through dialogue with two of them, consent to attendance in the study has been obtained. However, a similar approach could not be applied to the social secretary mentioned in the section ‘At the social services office’. In striving to protect her integrity and ensure that she is not recognised by readers, I have instead chosen to portray her without revealing characteristics, such as age or appearance.
Results
At the social services office
It was a Tuesday in 2007 when I asked for financial assistance for the first time in my life. I thought I had paid the rent, but like everything else I had forgotten—I had paid another bill and mixed everything up in my everyday anxiety and confusion after the discharge. So, I went to the social services office and stepped into a whole new context. Since I had become slower in answering questions, I was at a disadvantage where stress affected my ability to keep up with the pace of others.
‘You need money?’ says the stone face. She is relatively young and seems quite annoyed by my presence.
Pause.
‘Yes … um … I forgot to pay the rent … or I thought I’d paid it. I’ve problems with memory loss … and before my student grant comes I’m not … I don’t want to ask anyone else for help, I want to spare my family my pain.’
‘So … memory problems … due to what? Medications? I’ve never heard of that before. Are you sure that’s correct?’
‘No, wait … not medications … but ECT. I’ve been hospitalized for six months, and now I try to get back to … normal, but it’s difficult. I’ve forgotten so much … everyday aspects. How to pay for things in the store … the way in which a conversation is structured … how to do … normal stuff, where people live and what their names are. I’ve problems remembering my best friend … or what my apartment looks like. Every time I come home I’ve to learn to find things again … get familiar with different rooms.’
‘So, you’ve an apartment. Do you own it?’
‘Yes’.
This is absurd, what’s she talking about?
‘Oh well, then you can sell it if this should happen again (giggles) because you can’t ask for money like this every month, you’re young. I know what ECT is, I’ve more clients who’ve received it but they’re usually much older than you … because you’re …?’ (looks in her papers).
Hello, I’m sitting right here!
‘I’m 23 and have never had reason to ask for help before. But now I don’t remember my surroundings and … I don’t know what to do … I can’t remember how to play chess or the order in which you do things in the shower. I can barely boil water!’
‘Hmm … but are you sure this “memory thing” is the ECT? That it’s not just your mental illness that makes you forgetful and … disabled?’
‘What illness?’
‘I don’t know … haven’t you been on the psyche ward …?’
Can you possibly dislike anyone more than this?
‘Okay, but will I get help with money for the rent?’
‘You probably need housing support and custodianship because you don’t seem to be able to take care of yourself. Agreed?’
‘But … no … I want to be …’
What’s the word?
‘… autonomous! I can clean my apartment by myself, that’s not the problem!? I want to live again … find my old patterns in life.’
‘Well, today I’m in a good mood … but I advise you to have all the paperwork in order in a folder in the future so that you don’t have to come here again. But if this’s really due to the ECT … I doubt it. All right, I’ll approve your application … for today only. Please remember that.’
The irony made me jerk, and after being granted a monthly rent I left this terrible experience behind me. I asked a woman on the bus for directions home, and since she had no idea that I did not remember my surroundings she answered in a simple way.
I thanked her and almost screamed in anger as I walked up the hill to the apartment that was ‘apparently’ mine, where I had ‘apparently’ lived for two years and where there were clothes and notes and books I did not remember I neither bought nor read—my home was like a stranger to me.
Alienation in society
It was winter and almost painfully cold. I had started my bachelor studies at the Department of Social Work and was sitting at home on the edge of the bed, writing about my societal fears. I wrote that I did not know how to proceed to remember again—I did not even know if I had the opportunity to do so. I wanted my journey out of oblivion to begin, and in this, I could not continue to ignore social contexts. To me, society had become an unknown entity.
2008-10-10: Outside the window the fog is thick. I’ve gone to the university, bought a coffee and been cheered on by some peers I (apparently?) know. I sit in the auditorium, at lectures and at seminars. I hear my fellow students speak, I see how their mouths move. Yet it’s a suffocating loneliness that has re-emerged where I don’t know where to go. Right, left or straight ahead—I don’t remember this building, nor how to get home! And now, there’s research material that’s to be written and literature that’s to be read and in the midst of this confusion, it’s assumed that my brain will function. All this while I don’t remember and constantly lose both thread and direction—where am I really going?
Each lecture involved intense doubts and academic challenges. Would I remember my classmates? Would I remember the content of each lesson? What if I forgot to pay another bill? The panic surrounding the memory difficulties marked my days and I wanted to peel off the problems like peeling an orange—change identity or at least remember it. My past memories were an extension of the social life I used to live, and now they were gone leaving me tormented by fear of never being able to blend into society or become autonomous again.
Excerpt from a friendly conversation
So, I waited: for better days and for my memory to return. As the years went by, I was wishing for a cognitive recovery that never showed. When in contact with the insurance system, my so-called inconveniences were ignored in the light of the psychiatric problems: branded as ‘mad’ the blame yourself-mentality became an aggravating circumstance.
Much like the hospitalisation was a bit of a pleasure or that those six months at the ward were a holiday. I was the result of desperation within a biomedical efficiency system permeated by automatisation, where forgetfulness at the same time strengthened the medical identity but also weakened the social one. In an attempt to avoid total isolation, I struggled to keep in touch with important people because I was afraid that they too would otherwise be erased from my memory—I guess I was desperate in keeping these relationships alive.
2009-12-16: Earlier today, I went to see one of my closest friends. We had coffee together even though I, at first, didn’t remember if I preferred milk or no milk when the barista asked. I hesitated and struggled to answer. When we had finally straightened it out, we sat down in a corner where the music barely reached us. Honestly, it’s like a slap in the face every time my ability to remember is shattered by everyday trivial things such as too loud sounds, cups rattling and children making noises. Talking about violin playing makes it easier—it dulls all anxiety.
‘Do you remember classical music at all? Your favorites and certain interpretations?’
‘Yes, otherwise I’d probably have given up. But all that stuff’s still there. I remember every phrase … where to place my fingers on the violin and Brahms, Bach and Shostakovich being my absolute darlings.’
‘But you don’t remember … things we once did together?’
‘Some of it. More as fragments of experiences. I guess classical music’s so deeply rooted in me. Since childhood, I aspired to become a professional violinist but that ambition was shattered due to my mental health issues and me constantly being in hospitals. You and I got to know each other in our late teens, that’s probably why I can’t …’
‘Remember me?’
‘I remember you, just not every aspect of you … or us.’
Silence.
‘I’m sorry, this’s just … look.’
I handed her a piece of paper revealing a journal entry.
‘Yesterday, I read my journal for the first time since the discharge. Look at what one doctor wrote in September of 2007.’
She read out loud.
‘In my opinion, ECT is not a suitable treatment for the patient. She has suffered from severe side effects with very pronounced and long-lasting memory disorder, even retrograde amnesia. Also, significant deterioration caused by muscle relaxation with severely increased anxiety and increased PTSD symptoms.’
Pause.
‘This’s awful! I wish that they’d stopped the ECT earlier … they kind of watched you slip away and still … well, they just went on and on, didn’t they? I really don’t get it, how’s it possible to be so nonchalant when choosing something that should rather be considered an emergency solution?’
‘This doctor was the only one who took me seriously, none of her colleagues believed me. Unfortunately, she was partly absent during the ECT-period … and when she came back she said that she didn’t understand why I was still … treated.’
Discussion
At the social services office: Testimonial injustice and institutional power
Injustices are constantly created in different contexts. The difference between how these injustices are interpreted may emanate from more or less deeply rooted notions about target groups, where stereotypical images sometimes affect our willingness to receive knowledge from other people.
As such, some individuals have attributed lower credibility. However, the need to (over)prove and disprove different authorities means grossly affecting people’s living conditions. Questions here that are of significant character relate to what type of support this population needs, and how these needs best can be supported by, for example, society. Fricker (2007) links this to the fact that narratives generate varying degrees of credibility depending on who they belong to.
The phenomenon eventually results in many narratives being trivialised, making a high degree of credibility impossible. This trivialising aspect may bring feelings of social stigma (cf. Goffman, 1963), but also shame and powerlessness similar to what Skeggs and Loveday (2012) call ‘ugly-feelings’ (p. 472).
Because the experience itself is not recognised, the process also leads to different gaps which may be seen as a form of discrimination that generates interpretive precedence that does not benefit the target group and which tends to severely complicate the living conditions thereof. This form of epistemic violation, which Fricker (2007) calls ‘testimonial injustice’, is characterised by the inability of certain target groups to be seen as knowledge carriers—thus being strongly neglected.
This is addressed in my meeting with the social services, where I became exposed to institutional power and this particular injustice. There, I was attributed a ‘credibility deficit’ (Fricker, 2007, pp. 47–48) by the recipient (social secretary), whose task was to assess the probability of what the speaker (I) was saying.
In other words, I was indeed wronged in my capacity as an epistemic subject. These various forms of epistemic injustices risk locking the individual into a dysfunctional context, simultaneously as the recovery process is slowed down or never initiated—one becomes one’s disability. It was at a pronounced disadvantage that I tried to convince both the social services and the healthcare system that oblivion was not temporary but had come to control my life.
However, instead of being treated with dignity and respect at the unit for financial assistance, I was being interrogated by someone who stressed the ambiguities surrounding my memory loss in a way that made me feel like a liar. The sterile treatment became almost as traumatic as the ECT itself and, in contrast to Shakespeare (2010), I experienced a counterproductive shame of having suffered from mental health problems ‘and’ to have become even worse from what, according to the biomedical paradigm, would help.
Alienation in society: Memory impact and crip time in the educational sphere
Returning to one’s social context with an invisible disability may be understood as a number of ordeals. I did not remember my social network and lost touch with thousands of memories of what I had done and who I had been.
The majority of the doctors had said that my memory would return and that my experiences ‘were in line with what was considered normal’. In this I am not alone. I have met fellow patients who have shared their experiences of cognitive losses and tragedies—who forgot their children and who had their marriages crushed due to alienation from one another. We talked about this in the ward but were often silenced by staff (cf. Fivush, 2010) with the urging not to scare each other.
Fifteen years later, I am faced with the same questions as then. Where do these narratives fit in? How are they given legitimacy and by whom? Why was my knowledge valued lower than that of the professionals? Here, I argue that an important foundation for recovery, with an emphasis on therapeutic relationships, is about adequate treatment such as respect for the lived experience and being seen as a credible speaker rather than the opposite by default. A recovery without legitimate narratives complicates and slows down this process.
Still, many are met by a care and support system without knowledge of ECT when they meet people who no longer remember their way home from the grocery store, or do not know the neighbour who greets them. In terms of my education, it was a test every time I had hall exams with a lot of material to memorise and in rooms where there was always someone who coughed or pulled the chair along the floor (cf. Wood, 2017).
I needed complete silence to be able to think at all. After failing twice with a law exam in 2009, I realised that I needed some kind of help from the university. Greatly influenced by previous counterproductive encounters with authorities, I went to the study counsellor for disabilities with a wish for support in my everyday academic setting.
I explained the situation and it was, in a dignified moment, validated that I had acquired cognitive difficulties due to the ECT. A certificate enabled me to write exams individually and also with more (‘crip’) time (cf. McRuer, 2006; Pierre, 2015). The fascinating thing that happened was that I did not always need that extra time—the stress of not being able to perform decreased and it became easier to achieve academically.
Yet, my confidence in my memory changed. I often doubted my ability to keep up with long texts and conversations and, in one way, I myself internalised the clinical ‘gaze’ (Foucault, 1973). Simultaneously, I discovered ways of summarising new material, and by doing so I slowly navigated my way back to something rather coherent and familiar, albeit in a new vintage.
Excerpt from a friendly conversation: from ‘misfit’ to knowledge carrier
So, what did I do to put up with the cognitive chaos after being discharged? What mattered? I guess I kept going—sticking to structures to somehow endure the feeling of confinement, like socialising with friends and family who did not question or trivialise the memory disorders in contrast to others, such as social services and psychiatry.
For many years, my narrative was rejected on several medical levels, both via doctors’ counterarguments and the refusal of financial compensation from the Swedish insurance system. Fortunately, my recovery capital (cf. Tew et al., 2012) was solid with tenant ownership and stable relationships—factors I believe play a crucial role in what may be described as a recovery from the most acute phase.
Without these important recovery elements, I might have been in greater need of society’s help in various forms such as financial support due to my inability to work, or housing support to avoid isolation. Also, the exclusion that arose when I ended up in situations where previous experiences and events were discussed was initially painful and often resulted in me getting angry—at everything and everyone—but also at my inability to remember and at the ignorance of those around me who did not seem to grasp my situation.
Sometimes I forgot that these problems were hidden since there was no external evidence that clearly signalled that I had cognitive difficulties, although I felt like a complete stranger to everyone—I did not ‘fit in’ (cf. Garland Thomson, 2011). However, by alternately sharing knowledge and narratives marked by authenticity instead of scepticism, my everyday life became richer. Also, being socially and epistemically validated (Fricker, 2007) by family and friends, my social and personal recovery was indeed promoted.
Research generally shows a strong correlation between narration and improved health, where one believes that the narrative itself contributes to ‘order’ in human life (Hydén, 1997; Brown, 2009). In order for disabled individuals to have the opportunity to shape their lives based on the conditions given (e.g., crip time and societal attitudes linked to mental health problems), I argue that the social model of disability (Shakespeare, 2010) produces a cohesive framework for this endeavour.
From my point of view, there is one recovery-oriented dimension concerning all disabilities. However, they do not necessarily need to start from the actual physical body, be it about becoming like everybody else or returning to your former self. Here, the recovery may rather affect societal attitudes that are often attributed to a given target group. If we through our narratives constantly need to present a destructive and non-autonomous ‘I’, this should affect identity creation, which may contribute to poorer mental health and that important knowledge is lost.
Due to memory disabilities, I had to relate to new identities and conditions, but I also needed non-judgmental support from others to make everyday life understandable again. In my search for stability, whilst still confused, room for narration and being seen as a knowledge carrier became indispensable elements in reconnecting with my social surroundings (cf. Davidson, 2016).
I picked up clues in the conversations I had with various key persons, who rarely belonged to the health and social care apparatus. The narration was identity-building, and through language, I was able to slowly regain power and control over my fragmented existence. I also learned to work together with my head in finding new ways of memorising, mapping and sorting information compared to before the ECT—by doing that I think I have become as whole as possible after these cognitive traumas.
Conclusions and implications for practice: Promoting recovery-oriented work
The above lived experiences will hopefully broaden my understanding regarding cognitive disabilities after ECT. They also emphasise the importance of different professions, including social workers and psychiatric staff, needing to work in different ways to promote recovery, legitimise users’ narratives and not see disabilities as given obstacles in everyday life.
Without knowledge of different outcomes after ECT, stigma (Goffman, 1963), ‘sanism’ (Poole et al., 2012) and social exclusion are likely to remain self-generating and obstruct social and personal recovery (Leamy et al., 2011; Tew et al., 2012). When, in a kind of reflexive sociological spirit á la Bourdieu (Bourdieu and Wacquant, 1992), I tried to theorise my experiences a possible parallel to the narrative turn is glimpsed. This new turn, not only addresses analysis and interpretation of the narrative but also offers clues to how I as an individual understand my context and further my identity.
Generally, the concept of recovery is described as multifaceted (Le Boutillier et al., 2011), which raises the question of how we should understand recovery linked to significant memory loss. Does recovery in this context mean to have regained short-term memory, long-term memory, to remember at all, to understand what has happened, to learn to function again or to be somewhat at ease with social exclusion? Is recovery also about recuperating from power inferiority in that I was not seen as a credible speaker?
Recovery should promote the possibility of inclusion and reduce discrimination which in the long run could mean that increased recovery generates initiative and community access. For me, recovery as a phenomenon in everyday life has gone from an extremely limited starting point of what is possible and impossible, to a clear widening of these opposites.
This broadening of recovery has, in my case, been necessary to be able to estimate slips in the previous (medical) locking (cf. Järvinen and Milk-Meyer, 2003). My attraction to recovery is intimately intertwined with the very enabling of increased autonomy, despite possible residual problems, symptoms and limitations.
This notion has softened previous dichotomous thinking, which has compelled me to redefine concepts such as quality and dignity of life. However, recovery is also about finding alternative ways to achieve new goals and phase out the idea of the ‘chronic’ condition as well as exploring new identities.
Epilogue
Before I was sent out into society again, the institutional identity as well as the ontological vacuum became a kind of state of emergency. After 47 ECT treatments—instead of the six that were planned and without any evaluation of memory disabilities—I had forgotten who I was and where I belonged, which is why an embracing society, permissive contexts and humble relationships are stressed throughout this article. The period between 2004–2009 is still almost completely erased from my memory, apart from occasional fragments of events and, yet, I had to move on and learn to live with incomplete knowledge of my past. However, this is not a sob-story, despite profound changes in how I nowadays deal with (‘crip’) time and an extensive gap in my life cycle. On the contrary, it is a story about healing, power and hope—an endeavor for autonomy and independency. It also shows the possibilities to achieve social and personal recovery from (iatrogenic) traumas and to regain control in life, albeit institutional power play and authorities just turning their backs on you. Over time, I had to embrace these surreal experiences, and they contributed greatly to my ambition to become a social worker. I made this decision partly in the light of the general powerlessness I experienced in relation to the authorities mentioned in this article, and because I wanted to turn these shattering experiences into something meaningful. Without these, I probably would not have worked as a school counselor or user involvement coordinator in psychiatry or ended up as a PhD student in social work. My journey has several times strengthened my credibility in various situations in life as well as underlined the overall importance of recovery-oriented settings and atmospheres. Thus, my experiences—no matter how painful—are also my greatest strengths. The recovery from memory disabilities has contributed to an acceptance that my previous way of learning and remembering will probably never return, but it has still been possible to relate to new environments and create meaning based on the current condition. Nevertheless, losing one’s narrative, context and ‘self’ entails great risks, and this autoethnography was an attempt to write something academic about potentially devastating experiences. In the absolute beginning of the article I stated that my narrative did not fit into an established discourse. In the light of this, writing this piece and voicing experiences of ECT might be understood as a quest for epistemic justice and recovery from previously denied legitimacy in social work and psychiatry—hence ‘The Great Oblivion’ was my contribution to these fields.
Conflicts of Interest: None.
