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THis is centred on mental illness but in the way these people are margingalised and do self-experimentation, there's a lot that is familiar. Recommended read if you have the energy!
https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis
In psychiatry, only experts make diagnoses. They do this by referring to detailed lists of criteria in technical guides, such as the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth edition (DSM-5; 2013). With this manual in hand, a psychiatrist can determine whether a person is experiencing trichotillomania (hair-pulling disorder), schizophrenia, antisocial personality disorder, autism spectrum disorder, narcolepsy, childhood-onset fluency disorder (previously called stuttering), selective mutism, rumination disorder, or any of the myriad other disorders in the DSM-5.
Being given one of these diagnoses can sometimes change a person’s life for the better. It can validate their struggles and allow them to finally receive the professional support and medication they need to live a fulfilling life. But being diagnosed can have a dark side, too. It can take over a person’s identity. A psychiatric diagnosis is not only descriptive, it’s also prescriptive – it contains a narrative about what progress or recovery should look like. And, as this prescriptive narrative begins to dictate a person’s sense of self, a diagnosis can intrude so deeply into their identity that it may be difficult to imagine an alternative way of being.
In Japan, a radical approach called tōjisha-kenkyū has emerged to challenge the prescriptive narratives that dominate mainstream psychiatry. In tōjisha-kenkyū, which roughly translates as ‘the science of the self’ or ‘self-supported research’, people with disabilities and/or mental illness learn to study their own experiences. During the past few decades, this approach has grown from a grassroots movement created by people with schizophrenia and other mental illnesses in a small Hokkaido fishing town, to a revolutionary method for moving beyond psychiatry – a method that is being embraced across the strata of Japan’s rapidly ageing society.
The word ‘tōjisha’ is difficult to translate accurately into English. The term was originally used in law and politics where it referred to the parties – the tōjisha – involved in litigation. Its definition expanded in the 1970s when it became a means of self-identification for people in discriminated groups, including women struggling against a patriarchal society, those with disabilities who had become outsiders, and those who did not conform to gender norms. People in these groups adopted the word because it is loaded with conflict and resistance; it’s a name for those without power who are willing to organise and fight for their place in society, and for a right to determine their own future. ‘Tōjisha’ is how many people who are struggling against discrimination have come to identify themselves in Japan.
At the beginning of the 21st century, this term also began to be used by an invisible minority: those with schizophrenia and other psychiatric disorders. By identifying as tōjisha, members of this minority group sought a way beyond the dominance of medical models, to escape the harm of diagnosis and the rigidity of prescriptive narratives that predefined the path of recovery. But, unlike many other groups of tōjisha who advocated for social change, for those experiencing mental illness, such as schizophrenia, advocating for a place in society is complicated. Their ‘invisibility’ is twofold: they’re not only sidelined from society, but their disorders are also mysterious to themselves and others.
Instead of being passive ‘patients’, they could become active ‘researchers’ of their own ailments
What really set the stage for tōjisha-kenkyū were two social movements started by those with disabilities. In the 1950s, a new disability movement was burgeoning in Japan, but it wasn’t until the 1970s that those with physical disabilities, such as cerebral palsy, began to advocate for themselves more actively as tōjisha. For those in this movement, their disability is visible. They know where their discomfort comes from, why they are discriminated against, and in what ways they need society to change. Their movement had a clear sense of purpose: make society accommodate the needs of people with disabilities. Around the same time, during the 1970s, a second movement was started by those with mental health issues, such as addiction (particularly alcohol misuse) and schizophrenia. Their disabilities are not always visible. People in this second movement may not have always known they had a disability and, even after they identify their problems, they may remain uncertain about the nature of their disability. Unlike those with physical and visible disabilities, this second group of tōjisha were not always sure how to advocate for themselves as members of society. They didn’t know what they wanted and needed from society. This knowing required new kinds of self-knowledge.
As the story goes, tōjisha-kenkyū emerged in the Japanese fishing town of Urakawa in southern Hokkaido in the early 2000s. It began in the 1980s when locals who had been diagnosed with psychiatric disorders created a peer-support group in a run-down church, which was renamed ‘Bethel House’. The establishment of Bethel House (or just Bethel) was also aided by the maverick psychiatrist Toshiaki Kawamura and an innovative social worker named Ikuyoshi Mukaiyachi. From the start, Bethel embodied the experimental spirit that followed the ‘antipsychiatry’ movement in Japan, which proposed ideas for how psychiatry might be done differently, without relying only on diagnostic manuals and experts. But finding new methods was incredibly difficult and, in the early days of Bethel, both staff and members often struggled with a recurring problem: how is it possible to get beyond traditional psychiatric treatments when someone is still being tormented by their disabling symptoms? Tōjisha-kenkyū was born directly out of a desperate search for answers.
continues at link:
https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis
https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis
In psychiatry, only experts make diagnoses. They do this by referring to detailed lists of criteria in technical guides, such as the Diagnostic and Statistical Manual of Mental Disorders, now in its fifth edition (DSM-5; 2013). With this manual in hand, a psychiatrist can determine whether a person is experiencing trichotillomania (hair-pulling disorder), schizophrenia, antisocial personality disorder, autism spectrum disorder, narcolepsy, childhood-onset fluency disorder (previously called stuttering), selective mutism, rumination disorder, or any of the myriad other disorders in the DSM-5.
Being given one of these diagnoses can sometimes change a person’s life for the better. It can validate their struggles and allow them to finally receive the professional support and medication they need to live a fulfilling life. But being diagnosed can have a dark side, too. It can take over a person’s identity. A psychiatric diagnosis is not only descriptive, it’s also prescriptive – it contains a narrative about what progress or recovery should look like. And, as this prescriptive narrative begins to dictate a person’s sense of self, a diagnosis can intrude so deeply into their identity that it may be difficult to imagine an alternative way of being.
In Japan, a radical approach called tōjisha-kenkyū has emerged to challenge the prescriptive narratives that dominate mainstream psychiatry. In tōjisha-kenkyū, which roughly translates as ‘the science of the self’ or ‘self-supported research’, people with disabilities and/or mental illness learn to study their own experiences. During the past few decades, this approach has grown from a grassroots movement created by people with schizophrenia and other mental illnesses in a small Hokkaido fishing town, to a revolutionary method for moving beyond psychiatry – a method that is being embraced across the strata of Japan’s rapidly ageing society.
The word ‘tōjisha’ is difficult to translate accurately into English. The term was originally used in law and politics where it referred to the parties – the tōjisha – involved in litigation. Its definition expanded in the 1970s when it became a means of self-identification for people in discriminated groups, including women struggling against a patriarchal society, those with disabilities who had become outsiders, and those who did not conform to gender norms. People in these groups adopted the word because it is loaded with conflict and resistance; it’s a name for those without power who are willing to organise and fight for their place in society, and for a right to determine their own future. ‘Tōjisha’ is how many people who are struggling against discrimination have come to identify themselves in Japan.
At the beginning of the 21st century, this term also began to be used by an invisible minority: those with schizophrenia and other psychiatric disorders. By identifying as tōjisha, members of this minority group sought a way beyond the dominance of medical models, to escape the harm of diagnosis and the rigidity of prescriptive narratives that predefined the path of recovery. But, unlike many other groups of tōjisha who advocated for social change, for those experiencing mental illness, such as schizophrenia, advocating for a place in society is complicated. Their ‘invisibility’ is twofold: they’re not only sidelined from society, but their disorders are also mysterious to themselves and others.
Instead of being passive ‘patients’, they could become active ‘researchers’ of their own ailments
What really set the stage for tōjisha-kenkyū were two social movements started by those with disabilities. In the 1950s, a new disability movement was burgeoning in Japan, but it wasn’t until the 1970s that those with physical disabilities, such as cerebral palsy, began to advocate for themselves more actively as tōjisha. For those in this movement, their disability is visible. They know where their discomfort comes from, why they are discriminated against, and in what ways they need society to change. Their movement had a clear sense of purpose: make society accommodate the needs of people with disabilities. Around the same time, during the 1970s, a second movement was started by those with mental health issues, such as addiction (particularly alcohol misuse) and schizophrenia. Their disabilities are not always visible. People in this second movement may not have always known they had a disability and, even after they identify their problems, they may remain uncertain about the nature of their disability. Unlike those with physical and visible disabilities, this second group of tōjisha were not always sure how to advocate for themselves as members of society. They didn’t know what they wanted and needed from society. This knowing required new kinds of self-knowledge.
As the story goes, tōjisha-kenkyū emerged in the Japanese fishing town of Urakawa in southern Hokkaido in the early 2000s. It began in the 1980s when locals who had been diagnosed with psychiatric disorders created a peer-support group in a run-down church, which was renamed ‘Bethel House’. The establishment of Bethel House (or just Bethel) was also aided by the maverick psychiatrist Toshiaki Kawamura and an innovative social worker named Ikuyoshi Mukaiyachi. From the start, Bethel embodied the experimental spirit that followed the ‘antipsychiatry’ movement in Japan, which proposed ideas for how psychiatry might be done differently, without relying only on diagnostic manuals and experts. But finding new methods was incredibly difficult and, in the early days of Bethel, both staff and members often struggled with a recurring problem: how is it possible to get beyond traditional psychiatric treatments when someone is still being tormented by their disabling symptoms? Tōjisha-kenkyū was born directly out of a desperate search for answers.
continues at link:
https://aeon.co/essays/japans-radical-alternative-to-psychiatric-diagnosis