Tuesday 30 March 2021

Telling, Hearing and Questioning Stories in Public Dialogue

Today's post is by Katya Lukianova and Tim Steffenmeier who have recently co-authored a paper entitled: "Well, in the case of my mom… Personal stories as negotiable arguments in public forums", appeared in the Journal of Argumentation in Context.

Ekaterina (Katya) Lukianova is a program officer at the Kettering Foundation in the United States, with an interest in developing linguistic tools for analyzing public deliberation. Prior to this, she taught in the Department of English Philology and Cultural Studies at Saint Petersburg State University in Russia. Tim Steffensmeier is Professor of communication & leadership at Kansas State University. He is the founding director of Third Floor Research at the Kansas Leadership Center.

Katya Lukianova

The other day my husband and I (Katya) were having a late night chat about everything and anything after having put our two kids in bed. He was telling me a story about a friend from his student days, and how that friend, who married very young, encountered various challenges in his marriage. I thought the story was interesting, and was asking him questions. As we seemed to have exhausted the subject, my husband said “You know, I was seeing that whole situation differently from the way I used to, as I was recounting it to you. It was so long ago!”

Very often people think of dialogue, and particularly of public deliberation, as a way for people to learn from each other’s experiences, and – hopefully – to be able to understand others’ perspectives better. Various models have been proposed for how this happens; but most of them emphasize how stories told by others can help us see things differently. However, little research has been done on how storytelling and the questioning of stories in public deliberation helps people learn from their own experience, albeit with the help of others. Yet, this line of investigation into how stories are used in public dialogue can be crucial in attaining both better understanding of how deliberation works and in designing better processes.

Conveners of deliberative dialogues often hope that people will enlarge their perspectives and learn from each other’s experience. They also often emphasize that people may have a change of heart when they hear other people’s stories. This, in turn, should help people in communities find common understanding of social issues. Ultimately, it is hoped that this will enable people to cooperate better (examples of such initiatives that we are directly involved with include the National Issues Forums Institute associated with the Kettering Foundation and the Institute for Civic Discourse and Democracy at Kansas State University).

Tim Steffenmeier

However, this expectation that people will be changed in the course of dialogue may also turn some potential participants away, if they feel pressure to change their views on the basis of other people’s opinions. Our inquiry into storytelling indicates – among other things – that learning from one’s own experience through deliberative questioning is as important as learning from other people’s experiences. Personal stories in a deliberative forum are often treated differently than sacrosanct testimony – people agree to be vulnerable and subject themselves to being questioned by others. At the same time, this opens the possibility of people modifying their perspectives in a more organic, gradual, way, than just experiencing a cathartic change of mind because of another person’s testimony.

It is also worth emphasizing that personal stories in public deliberation have a different function than the kind of ultimate persuasiveness that many advocates of worthy causes expect their stories to have. For example, when public health professionals hope to use stories to educate people about COVID-19. They often assume that once the story that conveys their concern is communicated, their purpose is achieved – people will be more likely to trust them and follow their recommendations. It is, indeed, a legitimate and often effective use of the power of storytelling. However, a truly deliberative process respects the existence of competing personal stories, each of which can be questioned, and yet deserves its own respect.

Personal stories as a type of argument in public deliberation seem to have a unique function because they have the potential to invite the right combination of empathy and critical challenge to make sense of the manifold collective experience. As people tell stories in deliberative forums, they learn from each other’s stories, but also from their own stories as they discover new facets of their own experience when others question their stories. People adjust their stories and link them to broader public concern by comparing them to what they hear from others. This process is not conflict free, but it can be a productive process when people share democratic aspirations.


Sunday 21 March 2021

Delusions and Meaning

Today’s post is by Rosa Ritunnano, consultant psychiatrist and PhD candidate at the Institute for Mental Health University of Birmingham. Here she talks about a recent paper she co-authored with Clara Humpston and Matthew Broome, “Finding order within the disorder: a case study exploring the meaningfulness of delusions”, published in the British Journal of Psychiatry Bulletin.

In this paper, we ask questions relating to delusions and meaning, as prompted by the clinical encounter with Harry who is, in his own words, “the happiest man in the world”. Harry was referred to Early Intervention for Psychosis (EIP) services for a suspected first episode of psychosis, after telling his doctor that he had been the target of a worldwide conspiracy for more than 5 years. Harry believes that people are being told lies since the day they are born, and that we all live in a sort of “Truman Show” where the government and the NASA are using fake imagery to fool people into believing that what they see on TV is real. 

Rosa Ritunnano

Harry also believes that there is a hierarchy of people who are taunting him and this hierarchy goes up to Illuminati and the Queen. He thinks that there are lizard people in charge of the earth that have made people believe that the earth is round, when in fact it is flat. Harry is also constantly followed by people in the streets who make gestures as an indication to him that they know about him and about his past deeds. They can interfere with his thoughts, but he is now able to communicate back, putting the right thoughts into people’s minds.

One day, when talking about his current situation with me, Harry said: 
“If I went out one day and I realised that people weren’t expecting me to be there, it would be a real shock again…I would be...I don't know...?! I got so used to people expecting me to be there and lash out with them…I would feel alone again, which is what everyone else feels, like alone. So people are like a family for me, it's like a safety blanket, they make me feel so comfortable now…If I found out that they are not watching me and reading my mind, I would feel alone and crazy like everyone else. To feel like I have everyone following me around, whether it’s negative or positive, that alone is a force of power…knowing that you can influence people’s minds in the right way, I feel like Jesus (of course I’m not) but why not believe?”
While Harry’s case induced a sharp divide between clinicians in relation to issues of diagnosis, bizarreness and need for treatment, I found myself grappling with an ethical dilemma. I was called, in some ways, to make an ethically loaded decision about whether this person’s reality was too “disordered” or “dysfunctional” to be allowed within the limits of “normality”. As a clinician with ten years’ experience in psychiatry, I knew very well the DSM/ICD diagnostic criteria for psychotic disorders and I had been trained to assess risk and functioning, yet I felt unsure as to how we should best understand the sense of meaningfulness that Harry was describing.

Were Harry’s delusions the source of the problem or a response to the problem? What specifically was “dysfunctional” about them? In some ways, they seemed to be enhancing his sense of purpose, meaningfulness and belonging in his life (even if only subjectively). On the other hand, his “usual” life as socially construed (for example, holding a stable job) had been significantly impacted and he was no longer able to work.

Very limited research has investigated the relationship between delusions and the sense of meaning in life. This is in spite of empirical observations that elaborated delusions can enhance a person’s experience of meaning and purpose in life (Roberts, 1991), contribute positively to their “sense of coherence” (Bergstein et al., 2008) and also provide a sense of purpose, belonging and self-identity (Isham et al., 2019)

In addition to their explanatory value, considerations of meaning could have major implications for clinical practice, for example in relation to 1) patient-clinician communication: how should psychiatrists address delusions? (e.g., Zangrilli et al., 2014), 2) nosology: what makes a belief delusional and what makes delusions pathological? (e.g., Bortolotti et al., 2016; Petrolini 2017) and 3) treatment and medical ethics: is there a risk of iatrogenically inducing loss of meaning and subsequent depression if we eliminate self-enhancing delusions without addressing other issues?

Although we might not have all the answers yet, I believe that a phenomenological and value-based approach, along with interdisciplinary efforts from phil- and psy-disciplines, are needed to aid clinicians who often face the seemingly paradoxical coexistence of harmfulness and meaningfulness in individuals with delusions.

Tuesday 16 March 2021

Is Gender Dysphoria a Disorder?

In this post, Antonella Mazziotta, MSc student at the Institute for Mental Health at the University of Birmingham, discusses Gender Dysphoria. Gender Dysphoria is a topic not so well understood by scientists and society with this being reflected in the type of treatments and stigma around LGBTQ+ communities. Antonella's research interests include exploring Gender Dysphoria in childhood as well as language comprehension and production in Mental Health conditions.

Antonella Mazziotta

I had the opportunity to observe how dysphoria affects transgender people, especially children, and how society plays a vital role in the psychological outcomes of treatment for young people. This led to my interest in researching the pathological features of Gender Dysphoria. Do we believe that transgender children are aware of their inner identity or simply confused and therefore have a mental disorder?

The DSM-IV called this condition ‘Gender Identity Disorder’ which was changed to ‘Gender Dysphoria’ in its latest edition, the DSM-5, because of its unethical and controversial label. The diagnosis of Gender Dysphoria in adolescents consists of symptoms signaling discomfort of the patient with their biological sex and an incongruence between their assigned gender and the expressed one. Therefore, to better understand Gender Dysphoria, the condition and its possible underlying causes we need to start from the basics. What do we mean by biological sex and gender?

Biologically speaking, sex is defined by chromosomes: XX for female and XY for male. However, there is only one set of genes (called SRY) in the Y chromosome that are important to defining the individuals’ sex. It is proven by research that SRY genes can escape from the Y chromosome and ‘jump’ into the X chromosome. It is very complicated science, and we’ll leave this type of research to geneticists, but this gives us a possible hint on where Gender Dysphoria might arise biologically. This means that we have a genetic sex, a chromosomal sex and hormonally altered male, female or non-binary sex. 

Philosophically speaking though, gender is the inner perception of identity, the one felt by the patient which is not necessarily represented by their physical characteristics. Gender Dysphoria, most of the times, starts in childhood when children begin to understand the basic differences between genders around the age of 3. This phenomenon has been numerously documented in accounts of transgender adults that describe the discomfort with their natal sex from a very young age.

Treatments for Gender Dysphoria are complex, distressing and sometimes also inhumane. There is not a specific treatment for this condition, only a series of hormone therapies which consist of blocking the natural development of the natal sex organs to allow the child to experience the desired gender for at least two years. However, such intervention can lead to a loss of fertility and hence the inability to have biological offspring in the future, in addition to the psychological confusion that such therapy may cause. 

Finally, to complete the transition process, the patient must undertake sex reassignment surgery which is also necessary by law to be finally recognised with the desired gender. This suggests that this whole process of gender reassignment is not seen as a relief for the patient rather as a relief for policy makers. As expected, a requirement of this gravity by the law created rancour in the LGBTQ+ community which considered such process unethical and a human rights violation. Not all transgender people want to permanently change their natal sex with surgery and the problem is definitely not in their genitals for a percentage of transgenders.

Going back to the starting question we can conclude by saying that perhaps societal ideologies are partly responsible for such interventions and requirements. Such treatments can be psychologically distressing during early life. In addition, recent research is unravelling the possibility of a comorbidity between Autistic Spectrum Disorder and Gender Dysphoria which should be furthered investigated to better understand both conditions (9-10).

I urge you to ask yourselves some questions. Do people with Gender Dysphoria need treatment? Is there a lack of understanding of the differences between sex and gender in society? Can we really consider Gender Dysphoria in children a phase where there is confusion about identity? Or are we just trying to accommodate society’s beliefs about what is considered normal and abnormal? Education and early prevention seem to be key, especially in those classrooms from which transgender children are normally excluded. Goal directed groups in each classroom can help both parents and children to accept diversity and practice equality.

Tuesday 9 March 2021

Self Harm and Epistemic Injustice

In this post, Lauren Dixon examines arguments by Sullivan, Pickard, and Pearce on epistemic injustice and nonsuicidal self-injury in healthcare. Lauren argues that the notion of epistemic injustice is useful for patient care and clinician education but that harm minimisation techniques are not the way forward. Lauren is a current MSc student at the Institute for Mental Health, University of Birmingham. Her research interests include childhood well-being, bullying risk/protective factors, special educational needs and mental health advocacy.

NSSI (non-suicidal self-injury) “refers to the direct and deliberate destruction of one's own body tissue in the absence of lethal intent.” Epistemic injustice (a notion developed by Fricker, 2007) can be encompassed as failing to recognise a person as a ‘knower’ based on preconceived, and often incorrect ideas, about their identity.

Fricker argues that there are two types of epistemic injustice: Testimonial Injustice (TI) and Hermeneutical Injustice (HI). The former stipulates that a person’s word is not believed to be credible based on the listeners’ beliefs about their identity. The latter is where the person is not given the tools to impart their knowledge onto a prospective listener. It is well known that those who engage in NSSI are subject to stigmatisation within the healthcare system; so could this stigmatisation then lead to epistemic injustice?

Patrick Sullivan (2019) proposes that this population group experience both TI and HI. Patients experience TI, as they are often placed under false and negative stereotypes, such as being seen as someone who is “just” attention seeking (p. 354). Moving to HI, Sullivan argues that it is the way in which a diagnosis of NSSI is formulated and diagnosed that reduces the space to incorporate patient experience. NSSI patients often feel that the diagnostic process is “unhelpful and leaves them without any adequate means of expressing the reality of their distress.” (p. 355). This suggests that clinicians perhaps rely too heavily on diagnostic protocols when they are engaging with patients.

It is somewhat surprising then, that Sullivan appears to be in favour of harm minimisation techniques (HMT) as one way of continuing to support patients engaging in NSSI. Some examples of HMTs can be found here. In general medicine, a clinician's role is to minimise harm and suffering, not to encourage it. Sullivan’s argument, however, is that by denying the patient the opportunity to self-injure you are causing more ‘net harm’ (more harm overall). This is where EI comes in. By facilitating conversations about self-harm in recovery plans, according to Sullivan, clinicians are more accepting of patient’s account and willing to provide them with the tools to discuss self-injury freely in times of distress.

Is implementing this approach realistic, however, in all healthcare settings? I would say that Sullivan’s argument is failing to consider the deeper context surrounding why a patient self-injures. In his paper, Sullivan has only focused on the broad reasons why patients self-harm (to cope with distress) and argued that clinicians facilitating this action will allow them to feel heard and in turn, aid their recovery. Pickard and Pearce (2017) offer an alternative interpretation. They suggest that people often self-harm due to feelings of low self-worth, shame and self-hatred and thus, by facilitating self-injury in a care setting,
practitioners are reinforcing those beliefs e.g.: ‘We won’t stop you from hurting yourself because you are not worth it’. (p.2).

So instead of relieving the TI and HI felt by patients, Pickard and Pearce argue that HMTs only serve to reinforce the disabling phenomena. In conclusion, despite the evidence from Sullivan regarding HMTs improving clinician-patient relationships, given the risk of mental health deterioration (as demonstrated by Pickard & Pearce), I would conclude that HMTs are not the way forward.

Tuesday 2 March 2021

Mental illness is a choice, but who is the agent?

Today's post is by Dan Reardon who is currently an MSc student at the Institute for Mental Health, University of Birmingham. Dan is a medical doctor and an entrepreneur who has founded multiple fitness and nutrition companies, including venture capital funded FitnessGenes. He has been featured in InStyle, The New York Times, Men’s Fitness, Inc, Well+Good, Livestrong and on Fox News, ABC News, Inside Edition, Today, BBC News, and “The Doctors.” Dan has a keen interest in the demedicalization of young people, digital wellbeing and resilience.

Dan Reardon

I have a long-held belief that mental illness is far from something that is “real” in the disease sense, and yet the rate of growth of mental disorders, both the number of potential diagnoses (described by Foucault as being an invention of 19th century reformers), and the number of people suffering, is exponential. I’ve read countless accounts of mental illness being a choice of those that “suffer”, but I’ve realised the statement is wrong. The choice to have a mental illness does not solely reside, if at all, with the person seeking counsel, but with the professional that chooses to either reinforce their career decisions, or simply decide that there is an easy way to palm off the challenges of life of that person. 

These choices are heavily reinforced if not lavishly coerced by drug companies, and within this “therapeutic domain” (Hazemeijer and Rasker, 2003), the normal individual having a challenging life becomes the patient with the diseases “anxiety and depression” (that have no biological basis), requiring medications (that don’t fix any identifiable disease) to feel a bit better about all of their life problems that remain exactly the same.

This is not to say, nor to undermine the suffering of the person seeking help, but the second these life challenges become medicalised rather than understood (Laing 1965), is the second that the sense of responsibility to deal with the problems is lost – and it becomes the responsibility of the state. But the state doesn’t fix these underlying challenges, it merely attempts to use poisons (pharmacology from the classic Greek pharmakon meaning 'poison') to make you feel a bit better about the problem or make someone else’s life a bit better/easier.

Let’s look at a stomach-churning example. In 2002 Miami Dolphins player Ricky Williams (adored by many people of all ages) made an appearance on the Oprah Winfrey Show declaring that he suffered with shyness. That sounds quite innocent given 40% of the Western world (in terms of natural temperament) is shy. But this was no ordinary declaration of shyness because Ricky was being paid by Glaxo-Smith-Klein (GSK) to go on the Oprah Winfrey show and declare his shyness. 

In the months following he would become the poster boy of the new “Social Anxiety Disorder” drug called Paxil®/Seroxat® (Paroxetine). Shyness and introversion were now a bona fide pathology (according to the DSM), with a huge opportunity to get 40-50% of the population medicated using a technique called condition branding, and in 2003 alone, sales of Paroxetine globally reached just under $5B.

Alas as if the waters here are not already murky, let’s introduce the 2004 lawsuit by the New York State Attorney suing GSK for failing to disclose important safety and efficacy data about said drug. This all came to light because a memo from 1998 from inside GSK was leaked, telling employees to withhold clinical trial findings that showed the drugs had no beneficial effects in treating adolescents.

Introverted people know all too well the challenges that they face, not least because of how they are socialized with comments like, “he needs to come out of his shell” or “he needs to participate more”, so this insecurity creates a natural “que” to be receptive to a solution to the fabricated social challenges. If you can find a que, and you can build a drug, you will find your title of stigmatization in the DSM.

In her book Lean In, Sheryl Sandberg talks about how young boys on the playground that show leadership are described as “good leaders”, whereas young girls are described as “being bossy”. This is perhaps one of the many reasons why we often lack females in leadership roles, but it’s an example of the effects of stigma and how it can make outcomes in life inevitable. It’s bad enough that we had previously stigmatised shy children, but we now give them a medical diagnosis of social anxiety disorder, autism, or attention deficit disorder, with the perfect medications to fix this.

In conclusion it is my opinion that the fate of people’s mental wellbeing seems to be in the hands of mental health/healthcare practitioners, incentivized to declare a mental illness, and not to make the now contrarian statement that “your health is fine, but you need some support managing your life”, which would not be best managed by the medical profession.