In this two-part series, Mad in Asia Pacific is in conversation with the members of Taiwan Mad Alliance, namely Shu Shu, Tien-Hsing Hao, Zhao Sheng Lin, Fyon*. We explored some of the issues faced by queer and mad people with psychosocial disability in Taiwan today.
This is Part 2 of the series and Part 1 can be found here.
Jhilmil Breckenridge: I see you are deeply interested in mental health systems which can often re-traumatise even as they are trying to ‘help’. How prevalent is the biomedical approach in Taiwan?
In Taiwan, the main mental health services include: (1) medical treatments, which can only be offered by a psychiatrist, and (2) psychotherapy sessions, which are offered by psychiatrist, clinical psychologist and counselling psychologist.
No service is perfect. The use of all these services comes with a risk of re-traumatisation. The problem is that there’s no transparent grievance mechanism. When harm is done by institutions or professionals, we find it hard to provide evidence to file a complaint of medical malpractice. Additionally, there’s no trustworthy, neutral third party for users to file a complaint to.
As for the prevalence of services with a biomedical approach, EBM biomedical approach of mental health service, also called “Western medicine”, is much more prevalent than other services in Taiwan.
We have National Health Insurance (NHI) so it’s not very expensive to get medical care (and in 2016, medical care was made available for all, even those who missed making premium payments), from clinics to accredited hospitals; a consultation at a clinic costs about 150-600 NTD (5-20 USD). Compared to the high accessibility of biomedical treatments, psychotherapy services, which NHI doesn’t cover, cost 1500-2500 NTD (50-80 Dollars) per hour, about 1/10th of the minimum wage.
NHI covers both Western medicine and Chinese medicine, according to Taiwan’s National Health Insurance Annual Medical Statistical Report (2017). The Western medicine clinic consultation rate of the “Mental, Behavioural and Neurodevelopmental disorders” division is 10,408 people per 100,000 population, which is almost 10% of the population of Taiwan.
Chinese medicine clinic consultation rate of the same division in the same year is 735 people per 100,000 population, only 1/14 of the Western medicine clinic consultation rate. And we haven’t even mentioned the rate of emergency department visits yet (there’s no emergency department in Chinese medicine!). According to the Taiwan Ministry of Health and Welfare, the percentage of the population in Taiwan who take antidepressants is growing every year. It was about 5.6% in 2018. The news is full of media emphasizing how the percentage of the population in Taiwan who use antidepressants is lower than the prevalent rate of depression, arguing our country needs more medicine. We don’t agree with this opinion, it’s absurd to overlook the social contexts of depression. This only suits the global mental health movement to medicate and treat more.
Jhilmil Breckenridge: What are you hoping to achieve by gathering these stories and hopefully building a community?
We are young people in our late 20s to 30s and we want to build a community to gather people of our generation who experience mental distress. We focus on how the difficulties of a livable life affect our mental health. We have aspirations but everything seems so hopeless: rising house rents, low salaries, unavailability of decent jobs, not to mention, starting our careers.
TMA members seem to be the luckier ones who are able to obtain certain cultural capital from higher education, but there’s few opportunities to transform them into economic capital to keep us a basic, stable, liveable life–we are queer, domestic violence survivors and we live alone without any stable social support.
The complexity of our traumas and the struggle of surviving drive us ‘mad’, but the modern mental health system just colonizes our suffering by categorizing our “syndromes” rather than understanding the essence of our suffering: social oppression, trauma and lack of connections. We want to build a space to tell these stories.
Jhilmil Breckenridge: What are the rights of people with psychosocial disability in Taiwan? Do you have a pro-CRPD Mental Health Law in place?
Having enacted the Convention on the Rights of Persons with Disabilities, Taiwan began to engage with regulating disability rights, thinking of ways to implement them through policy and law.
First, the year after the CRPD was enacted, the former ‘Persons with Disabilities Protection Act’ was significantly amended into ‘Persons with Disabilities Rights Protection Act’ (July 2007).
As for its legal implications for disability rights, it says, “This Act aims to protect the legal rights and interests of people with disabilities, secure their equal opportunity to participate in social, political, economical, and cultural activities fairly while contributing to their independence and development.”; which is with the intention of a rights-based approach for disabled people, instead of a charity model.
However, the Act focuses on how government agencies assist individuals with disabilities according to different levels of impairment. Even though the International Classification of Functioning, Disability, and Health (ICF) is being used in Taiwan, disability assessment is still highly personal, physical and disease-centred.
As a result, the structural problems in everyday life are not considered, and if one’s personal, physical or mental conditions are not considered “serious enough”, they are left out of social welfare assistance. On the other hand, for ones who are with a disability certification, they face the stigma of being marked as “problems”.
Jhilmil Breckenridge: I really resonate with your approach of building resilience from where you four are—understanding and building linkages between trauma, the queer experience, lack of family or state support and oppression by the modern mental health system. How are you hoping to reach and connect with more people who may feel a similar way? How do you plan to build the movement of TMA?
We plan to connect more people by conducting these activities which are currently underway:
- Book Club: organizing the mad histories and discourses in Taiwan. We are aware that the biomedical knowledge and technologies dominate Taiwan’s discourses on madness, so there’s a need for alternatives. We start with this question: How do people think and act in different historical contexts in Taiwan?
- Empowerment: We are learning and have just started our participation in writing the CRPD parallel report. We arrange our schedules so that we can go to book clubs, conferences, exhibitions and policy briefs about issues of mental distress.
- Gathering stories and narratives around four topics: (1) the trauma and failure in our user/survivor community building our experiences, (2) narratives of suffering, distress and ‘being abnormal’ in everyday life, (3) narratives of iatrogenesis (re-traumatization in mental health system), (4) organizing the history of madness in Taiwan, we might make a list of interesting people to interview (if they are alive). We express these narratives through not only words but also visual, multimedia content.
- We plan to hold at least one presentation before the end of 2020 through forums, seminars or art exhibitions.
Together we are not looking for a method to ‘cure’, but rather ways to collaborate with each other, to make connections with each other.
Jhilmil Breckenridge: What are the forms of healing that have worked for you, four core members? Is there a practice you really recommend? Is there a space for alternatives to biomedical approaches in Taiwan?
For now, it’s hard to say what method we truly recommend. But we can share some thoughts.
In Taiwan, besides Western medicine and Traditional Chinese medicine, there is also folk medicine and some other new healing techniques like Tarot, new age healing etc., that people often use. Although Western psychiatry is at an advantage in terms of health care resources and facilities, it’s often heard that people always ask for help from the other sets as well, like folk medicine and Traditional Chinese medicine rooted in Chinese culture (especially in the South China coast).
‘Siu-kiann’ may be interpreted as ‘acute stress disorder’ in Western medicine, but in folk cultures, there is a set of beliefs that the ‘soul’ and the ‘body’ can be separated. The ‘Siu-kiann’ ceremony, also known as ‘Soul’s calling’, has a variety of methods. Generally, those who come for help will be asked to procure personal clothes. The practitioner will put the clothes on a rice plate and rice cup, and then read mantras, and use charms to call their names, in order to recall some of the souls that were frightened away.
In the field of Traditional Chinese medicine, acupuncture treatment for depression is becoming more and more common. It is based on the concept of Chinese medicine’s ‘physical and mental theory’, “Anger harms the liver, euphoria harms the heart, worry harms the lung, yearning harms the spleen, panic harms the kidneys”.
These traditional systems, thus, have different perceptions of the relationships between the body, mind and soul, as compared to the biomedical model.
When it comes to treatment options that members of TMA have experienced before which are more effective for them, it’s different for all of us. For Shu, these three sets have not been helpful. He uses self-medication outside the legal framework, which relieves him from the perennial pain caused by his ‘Obsessive-compulsive disorder’. And for another TMA member L, she had heard voices persuading her to kill herself, so she jumped. After surviving the jump, she met a Buddhist master who taught her the chants of ‘Medicine Buddha’. She feels calmer chanting every day. But according to her psychiatrist, the reason she got better is medication, as there’s no “scientific” evidence of how chanting helps with her recovery.
Though not every TMA member believes in the spiritual aspect of our existence, we all agree that crisis and distress, which are not only constituted by psychological conditions, often need spiritual approaches/ rituals to find meaning. But on the other hand, it’s a fact that there are many so-called healing methods which charge high prices from users and turn out to be of dubious quality or may even be scams.
Jhilmil Breckenridge: How familiar are you with CRPD and the rights of those living with madness and psychosocial disability?
The agent/subject of the CRPD, in the Convention signed by the end of 2006, was renamed from ‘disabled persons’ to ‘persons with disabilities’. It’s a shift to the socially-aware model of disability which focuses on the conditions of their disability, perhaps from the psychosocial, intellectual or physical limitations faced by them in the society.
In view of it, the present situation which ignores psychosocial diversity on the basis of legislation must be reformed, and persons with disabilities are able to participate in the society as much as the ‘non-disabled’.
In other words, the Right to Equality as well as the Rights of Citizen Participation, are the ones that the Two Conventions mainly ensure. We TMA members are learning to participate in writing a parallel report. When it comes to the statement of “universal human rights”, we often see how different discourses of fundamental rights compete with each other.
For instance, the controversy of self-harm and suicide is the conflict between Right to life (e.g. The discourse “every suicide is a homicide”, that mad people’s suicide is tragedy caused by social inequality and should be prevented) and Right to liberty (e.g., mad people can choose euthanasia to end their life). We need to evaluate between different standpoints and life experiences rather than fight for universal values that may or may not work in certain contexts.
Jhilmil Breckenridge: What role do you think the government and policymakers could play? Are you hoping to lobby in these spaces?
As we mentioned above, the government allocates welfare resources for education, job and living allowance based on, first, the degree of personal impairment, if one’s personal, physical or mental condition is not “serious enough”, they are left out of social welfare assistance.
On the other hand, for ones who are with a disability certification, they face the stigma of being marked as a “problem”. Second, the kinship of blood or marriage, the immediate blood relatives are preset as personal social network with an obligation to provide economic and social support. But for people who were evicted by their biological families because of being considered “abnormal” like belonging from a sexual minority group or being “mad”, if they want to apply for government’s welfare schemes, they are often rejected because of their parents’ income being inaccessible to them. When hospitalized, they are asked to notify their family members who traumatize them the most, and their friends are in most cases, forbidden to visit, especially if they come to be recognized as former patients.
In addition, there needs to be a more community-based recourse, not to mention government assistance for grassroots user/survivor self-led groups. Most user groups are patient groups formed through services led by professional practitioners. So the dependence upon professional practitioners is strong and in most cases, the user’s perspectives are highly represented to the public by professionals, thereby taking away the user’s own agency.
Most users have limited access to know their rights. There are some discussions in Taiwan about setting peer supporters/ peer workers in mental health services (We don’t have a policy for national recovery-oriented services so far, and there’s no identification of peer worker as official employment. However, there are some peer support services set up by professionals as an exploration of emerging services), but without the empowerment of the mad culture and the reflexivity of professional practitioners on their roles in peer groups, we’re afraid that not much would change. It’s as though we have national committees for persons with disabilities for them to participate in, but the positions are limited and the fundamental cultural change still needs alternative discourses and cultural resistance movements.
Speaking of alternative discourses, if we want to speak out our alternative experiences, sometimes the government may restrain our free speech out of the intention to “protect” us. For example, if we want to talk about some taboo issues like self-harm or suicide, we can’t present too many details, like we can’t show our self-harm wound as artwork to express our experience unless we attach a lot of warnings. We know it’s to prevent the “copycat effect“, but sometimes it protects nothing but produces more fear. The limited freedom of expression is thus also an issue for us.
We’d, thus, like to connect with not only users/survivors but professionals who always feel “unfit” in systems that are willing to listen to us and see what we can do together.
*With special thanks to Richard K. F. Liu and Tzeng Sean for their help with English translation.