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The stigma of illness during coronavirus in Japan

By Laura Haapio-Kirk, on 17 July 2020

 

A graphic vignette showing two people.

Care workers adapt to the coronavirus in Japan. Names have been changed. Illustration by Laura Haapio-Kirk.

“We often hear the word jishiku repeatedly during this (coronavirus) time. Jishiku means, Ji: self, Shiku: 粛 refrain, or restrain.  In my opinion it’s very much based on Japanese mura (village) culture where everyone looks at what everyone else is doing. It is the big reason why the elderly in rural areas are so nervous to be infected, although the cases are quite low there. You will be mura-hachibu (ostracised) if you get infected in a small mura where everyone knows you well.”

Speaking with Dr Kimura, a social nutrition researcher at Osaka University who conducts fieldwork in Tosa-cho, the same rural Kōchi town where I spent time, she asserts that mura culture is alive and well in rural areas while diminishing in urban areas around the rapid economic growth period of ’80s and ’90s (kodo keizai seichou). The small communities that remain in rural areas who still practice rice-farming tend to be close-knit and everyone knows everyone else’s business. “Here, gossip travels faster than the internet”, says one local woman in the town.

The number of coronavirus cases has remained relatively low across Japan, however now (in July 2020) the numbers are rising in major cities, and Kōchi city, which is a one hour drive away from Tosa-cho, has reported cases again after the prefecture was declared free of coronavirus months ago. This uncertain time has significantly impacted on the lives of older people who are largely remaining at home, with events and social clubs cancelled. But even when things open up again, the social stigma of illness may act as a deterrent to engage freely in social activities. The fear of social ostracisation because of a perceived lack of self-restraint may be greater than the fear of the illness itself.

Yamakubi san, the head of the social welfare office, who usually co-ordinates household visits by social workers, has been motivated by the virus to explore ways for her staff to keep in contact with elderly people remotely. While some are confident with using a smartphone, many others are not. Many older people still use flip-phones and landlines and would find it difficult to engage in video calling. If one of the main issues facing older people during the COVID-19 pandemic is social isolation, this is exacerbated by the inability to use new communication technology. But when older people are interested in developing their digital literacy, such as by joining a smartphone club – as is the case with a number of people in Tosa-cho, they are keen to explore the potential of smartphones for keeping connected during this time. For example, I am part of a LINE (Japanese messaging app) group that that consists of a group of women in their 60s and 70s, which has become a space for sharing virus-related information and photos of home-made facemasks. COVID-19 has shown just how critical digital literacy interventions are when tackling social isolation, which can be compounded by the stigma of catching the virus.

 

50 colours of menopause – reframing the ‘age of despair’. By Maya de Vries and Laila Abe Rabho

By Maya De Vries Kedem, on 30 September 2019

Authors: Maya de Vries and Laila Abe Rabho

Photo (CCBY) Maya de Vries. Activity at the senior’s club: colouring pine cones.

Right from the beginning of the ASSA project, one of the main topics that we discussed was menopause. Although menopause is less of a taboo, and people talk about it much more in the al-Quds field site compared with some of the other ASSA sites, it took a us a while to be able to speak with informants about this sensitive topic. We discovered that for many women speaking about the physical and mental ramifications of menopause is still not easy to do and they tend to be shy and even embarrassed by it. It was only recently, after a year spent at the field site that gathering information about menopause became easier, mainly because women felt more comfortable to open up.

Research about menopause in al-Quds is rare. However there is some research about this issue focusing on the West Bank. In the article Age of despair or age of hope? Palestinian women’s perspectives on midlife health (Hammoudeh et al., 2017), authors depict the perception of menopause among Palestinian women in the West Bank who were born between 1960-1975. They clearly say that they had no access to Palestinian women in Jerusalem due to political and security problems entering Jerusalem from the West Bank.

The term used in Arabic in medical literature and discourse to describe menopause in the West Bank and in al-Quds is the ‘age of despair’ (sin al-yaas). However, in Hommoudeh’s article this term was unpopular with the women interviewed, and they preferred not using it. Similarly, in al-Quds, women that we spoke with in Dar al-Hawa, do not like to use this term. They are familiar with it, but do not wish to use it when talking about themselves, since it is not describing them correctly. The word despair is not relevant for them and perceived as negative, whether they are married with children, widowed, married with no children, or never married. They simply do not see themselves as in despair; for them it is very strong word, that does not describe their daily life.

The women we interviewed knew that they are in their midlife, but midlife for them means much more than just menopause, which carries negative associations. Many women articulated a positive view about midlife and ageing as a natural process that is part of life. Midlife, is considered to be an age of peacefulness and wisdom in the Holy Quran. The ‘age of despair’ is not mentioned; the term to describe older people is ‘old in years’ (Kbar fi al-Snin or Sheikhoukha, referring to old people, but they tend to see their age as an advantage because of increased life experience.

While talking with the women in al-Quds we found out that they talk about menopause in private and intimate situations such as meetings with girlfriends or with other women from their family. In such occasions, they talk more about the various physical symptoms characterising this age, such as – hot flashes, tension, incontinence, lack of sleep and more, and less on the mental issues that might appear. Some said that they were sure that these symptoms will pass with no need for medical treatment. They thought menopause is natural thing, and temporary. What was interesting to hear is how they refer to the term ‘menopause’, and what are the alternatives they are using instead.

In Yasmin’s (42) interview she referred to menopause as the ‘safety age’, when there is no chance to get pregnant.

yes, I have heard about it, there is another term that is used as an alternative to menopause and it’s the safety age. I know many women relatives and friends that reached this period of their life, but they never said that they were going through it (menopause). I think that this term is wrong, because there is no age that stops women.

Abeer (58) called menopause in a different name, considering it as ‘maturity age’, while referring not just to physical consequences of menopause, which are usually negative, but also to a better self.

I have been through the menopause period, I consider it maturity age, in this period women feel that they are able to take decisions by themselves, she feels that she is strong, she lives her life the way she wants, before the menopause her life was different.

Tagreed (60) sees menopause in contrast to what it represents. For her, the role of the women as grandmother is significant:

I don’t know, maybe when women reach this period her role in life ends, on the contrary, I believe that they are wrong because in this period her role becomes even more important than before, she takes care of her grandchildren, her children get married, she takes care of everything, and all the family depends on her. They think that if her period stops, that she is no longer able to become pregnant, her role in life ends. In contrast, in this period she takes care of her grandchildren, and her children depend more on her.

Tentatively, we can say that the term ‘age of despair’, is no longer relevant, and the concept of a novel, ‘golden’ prestige age is rising now. Our guess is that there are plenty of reasons for this shift, mainly because medicine is progressing and leisure activities are more commonly pursued. We will continue exploring how the digital environment impacts on this change; this still is an enigma for us, as many of our informants are not using digital devices, or health apps heavily. Some do not even carry a smartphone.

Interestingly, just as the term ‘menopause’ is being reframed, the same is happening also with the term ‘old’, as many in al Quds refrain from using it as it might be considered insulting. Many times, we see the word “seniors” instead of old, switching the word out of respect. A small example of the change in discourse can be seen in the new WhatsApp group opened two weeks ago by the coordinator of the seniors’ club under the name ‘The group of the golden age club’. The previous WhatsApp group, which is now being abandoned by its members, was called ‘The group of the older people of Dar al-Hawa’. The ‘golden’ age highlights the possibilities this age, despite menopause, can offer. Is this reframing simply concealing what is really happening in this age? Or due to various changes in the modern world, is ageing is coloured in gold? So far the al-Quds’s field site tells us that ageing is changing, and if you are financially secure, yes – you can experience the ‘golden age’.