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Woman, interrupted

Marilia Duque E SPereira9 January 2020

The “Menopause Kit” developed by Rosana Galvão, who has faced a decade of hot flushes. It includes an elastic hair band, a hair clip, a hand fan, tissues and a bottle of water. Photo (CCBY) Rosana Galvão.

 

Three weeks ago, The Economist published an article[i] addressing all the symptoms menopausal women face, often unnecessarily. The article talks about some of the arguments in favour of the hormone replacement therapy (‘HRT’ hereafter), highlighting that misinformation about the treatment can often lead to its demonisation. In the author’s words, HRT constitutes a “cheap, alternative” treatment with significant “long-term benefits” for women entering menopause.

The article also discusses the two publications that are responsible for various turning points in terms of the reputation of HRT in the past decades. The first book to discuss the symptoms caused by the deficiency of oestrogen and as well as its potential use in alleviating these symptoms was “Feminine Forever” by Robert Wilson, published in 1966. The second turning point was the publication of the study known as the Women’s Health Initiative (WHI hereafter), published in 2002. This publication was the first to seriously emphasise the harms caused by HRT and has had a long-term effect on the reputation of the treatment, associating it with an increased risk of breast cancer. According to a 2006 BMS (British Menopause Society) article, after the WHI study came out, ‘most women’ stopped having HRT. The most recent turning point in terms of the perception of HRT is the launch of the book “Oestrogen Matters” (2018). The book’s co-author Avrum Bluming (an oncologist) reframes the findings of the original WHI study, arguing that the women recruited for it were already unhealthy or well beyond the ideal age for starting HRT. This publication, along with other recent findings, may be the key to redeeming the previously controversial treatment after all. This is great news for those entering menopause now or in the near future, but what about those to the women who went through it in the last 20 years?

The WHI study has undoubtedly had a long-lasting effect on the reputation of HRT all over the globe. This includes Brazil, where I conducted a 16-month ethnography with older people, among them women aged 50 to 72. When the findings of the WHI study were published back in 2002, the Brazilian journal Folha de São Paulo[ii] published an article where the Brazilian Ministry of Health proudly informed its readership that the Brazilian public health system (called ‘SUS’) was aware of the risks involved in recommending HRT, only having done it for very specific situations or cases (such as when women were suffering from osteoporosis) since 1995. At the time, the Women’s Health Coordinator in the Brazilian Ministry of Health was quoted as saying: “The risks are bigger than the benefits. Any serious person would recommend the therapy with precaution”. It is interesting to note that in Brazil, menopause as an issue had been included on the public health agenda since 1993, as part of Brazil’s Women’s Integral Health Assistance Programme (PAISM)[iii]. This marked a shift in the overall approach to women’s health, from an emphasis that was previously focused on maternity, to a more holistic approach that took into consideration all stages of a woman’s life and health. This can be seen a consequence of the ageing of the population in the country.

Nowadays, the official guidance published by the Brazilian Ministry of Health, summarised in a document called the ‘Handbook of Care for Women in Menopause’[iv], recommends a mix of physical and educational activities as well as eating a special diet as the main approach to managing the menopause. The material also contains healthcare professional facing information, addressing therapies including hormonal treatment (followed by a discussion of its side effects), acupuncture, phytotherapy (a type of herbal medicine) and anthroposophic medicine (a distinct special therapy system that has recognition in some countries).

The Ministry of Health issued handbook also encourages women to be informed about the risks of HRT so they can make a decision about the type of therapy they want to have. From the perspective of the research participants in my field site (a middle-class neighbourhood in São Paulo), I can say that this is very much a secondary problem. This is because there is first of all a lack of reliable information and support about menopause in the first place, and about what its effects on a woman’s quality of life may be. A quarter of the women I interviewed had gone through it with no information or support, and confessed they didn’t have much time to pay attention to the changes in their bodies because they were focused on work or family. At the time (10 to 20 years ago), many of them were taking care of their children and older parents. Moreover, menopause is a taboo even among women. Some women I spoke to are from a generation that didn’t talk about menstruation or menopause with their mothers or with their cousins or friends. They were alone. Some of them only realised during the interview that the time they stopped having their menstruation actually coincided with the time they started to experience depression, insomnia, weight gain, and a loss of libido. Decades later, I can see that the new generation of menopausal women have started talking more about the subject, but the level of professional support hasn’t improved very significantly, especially for those who rely entirely on the public health system. Take Maria’s case: aged 52, she has been having hot flushes for a whole year, but she can’t say if she is experiencing menopause or not, because she has got her period twice during this time and her doctor says her diagnosis is unclear. Without professional support to guide her at this time, she has started drinking blackberry tea, while she trying to manage the embarrassment and discomfort she faces when the hot flushes come in public. The tea was recommended by her friends, who are her primary source of information. Maria asks them for advice, but each one tends to suggest different things, since they experience menopause in different ways with distinct symptoms.

Menopause is also a class issue in Brazil. The meaning attributed to menopause and the treatments available differ from one social class to the other.  A study conducted in a low-income and religious community in the Northeastern region of the country[v] showed that in the community in question, menopause can be seen as an act of God, with God being the one helping them accept it with resilience. In that specific example, women are subjected to a set of stigmas related to loss of fertility, leading to situations where some are seen as ‘dry women’ or even ‘non women’, primarily from the perspective of men. In a peripheric urban area of Sao Paulo, another study[vi] shows women experiencing menopause as a totally unexpected event, almost as if it is something one has ‘caught’, and is not directly associated with ageing. These women tend to use basic public health clinics to manage their physical symptoms without having access to a specific programme or assistance for menopausal women. In their case, HRT is rarely recommended because of its cost and because there is a gap in local resources that means clinics are not able to manage patients in a more long-term way – HRT would involve having routine medical tests, for example. Another study conducted in an upper middle-class neighbourhood in Rio de Janeiro[vii] shows that here, the situation couldn’t be more different: menopause is swiftly ‘treated’ with HRT almost by default, because these women are in the prime of their lives and want to get on with things. This doesn’t mean this group of women considers menopause something problematic or unnatural. They just want their bodies to have the ability to carry them through the new experiences and projects they aspire to do during this period of their lives – and they can afford to pay for it.

A moral dilemma

When access to information and the cost of treatment are not an issue, having HRT still seems to raise a moral dilemma that goes beyond the choice between hormones or cancer. Having HRT can be seen as an act of vanity or an irresponsible decision on the part of women who simply can’t accept the fact they have aged, with HRT symbolising the selfish and dangerous choice to pursue youth. The moralising dimension to the consequences of that choice can be seen in the following paragraph, taken from another official document published by the Brazilian Ministry of Health, the ‘National Policy for Integral Attention to Women’s Health’[viii]:

The medicalisation of women’s bodies, with the use of hormones during menopause, finds a fertile field in the female imagination due to the false expectations it places, such as eternal youth and beauty. Medicalising women’s bodies, in the name of science and supposed well-being, has always been a practice of medicine, which will only change when women are aware of their rights, of preventive and therapeutic possibilities and of the implications of different medical practices over their bodies. Oestrogen abuse for menopausal symptoms causes serious health problems, and women should be properly informed so that they can decide whether or not to do hormone replacement therapy.

In my field site, the moralising discourse around HRT is expressed even among women who do decide to have the treatment. Even as they describe the way in which they suffer from menopausal symptoms and how HRT provides them with a better quality of life, there is still an attempt to justify their choice using expressions like “I only used the bare minimum”,I only had it for a bit”, or “I wish I had prepared for menopause better with more natural alternatives”, quickly adding that they are either trying to quit HRT or have already done so.  Claudia, aged 65, is one of them. She is convinced that women don’t have to go through all the suffering menopause can bring, and that HRT is an important ally in supressing symptoms, but she too feels the need to emphasise that she doesn’t take it anymore, even if later in the interview she says she is still under treatment.

In the same National Policy for Integral Attention to Women’s Health, menopause is addressed as a challenging experience for women, who are now having to deal with the loss of their ability to have children as well as the end of their youth. Combined, these factors would be enough to trigger a crisis in some women, as highlighted in the paragraph below:

 “There is a systematic discrimination in our society based on people’s chronological age. In the case of women, this discrimination is most evident and occurs not only in relation to the physical body – fuelled by the overvaluation of motherhood in relation to other capacities and the myth of eternal youth – as in other aspects of life. In a patriarchal society where youth and beauty are related to success, entering “middle age” can give many women the impression that “it is all over”.”

I have had the opportunity to listen to the stories of seven women over 50 who don’t have children. Three of them had experienced fertility problems (either them or their husbands) although the couple decided to keep having sex without any intervention. The fourth woman I spoke to was married, but the couple decided not to have a child. The other three women were single. Two of them said they didn’t have a partner they could feel committed to and could start a family with and the third just can’t imagine herself being a mother. All of these women are now thinking about the children they didn’t have, but that is just because, like any other person at this stage in their lives, they have begun to think about who is going to take care of them when they get older. There is no evidence among these women or among my own female research participants that they are experiencing the feeling that “it is all over”. On the contrary, they are living their lives to their fullest and many of them are discovering new passions and engaging with new projects. While it is true that they complained about their bodies, this is not because they miss their beauty or their youth – in fact, they usually complain about the disposition they used to have (and for some, this includes the disposition for sex).

When sex matters

Menopause isn’t only about the end of motherhood or the loss of beauty. For some women, sex is huge part of their identity, although that is not true of the majority of the cases in my field site. Most women I spoke to recognised the changes in libido that they experienced after menopause and accepted them. In some cases however, the loss of libido can represent a sort of loss of the self. That was the case with Carla, aged 70, who had HRT for five years before her doctor decided it was time to stop the treatment, leading to her spiraling into depression, noticing changes in her hair and skin and also in her libido. Carla defines herself as a person that is extremely connected to sex.

Do you know a person who is good in bed? That is who I am, and I am not talking about sleeping. I know what pleases me, I know how to please my partner, and I know how to make him please me”, she says.

As an example of an upper middle-class participant, Carla challenged her doctor’s authority. She researched alternative doctors and found one who she knew was in favour of recommending HRT. She then pursued all the necessary tests in order to be prescribed the treatment again, and found that this enabled her to go back to who she was.

I am not just a statistic. I do the necessary exams each three months and I have decided to take the risks”.

Another participant, Gisele (aged 61) like Carla really enjoyed sex, but her journey took her in the opposite direction. Her doctor didn’t recommend that she have HRT, given her family history of breast cancer and because she was a former smoker. “If there is even a 0.5% chance of getting breast cancer, I won’t take the risk”, she says. Since then, and despite 11 years of hot flushes, Gisele has tried to reinvent herself:

“I am glad I enjoyed sex so much, I am glad that I never held back. It was good because at least I have something to remember today. That person – me –  I really existed. Because it’s so hard today without any libido, zero. Where did all that desire go? Did I really live all that? Was it me? It was me, right? It’s very hard to recognise myself. So I’m in much need of psychotherapy, because it’s all so strange to me. How can I start to think about myself without sex?”

The original Economist article sums up the harm that can be caused to women’s bodies very well, noting that menopause can harm “brains, hearts and immune systems. It is associated with a higher risk of osteoporosis and fragility fractures, increased abdominal fat, and a heightened risk of contracting diabetes”. It is here that I would like to highlight the ways in which menopause can also harm women’s self, going well beyond the issues of motherhood, beauty, youth or diseases. In some cases, having or keeping a disposition for sex really matters to women, an aspect that I thought was missing in the original article. As the author says, “the symptoms of menopause can include hot flushes, depression, aches and pains, insomnia, anxiety and transient memory loss”. Indeed, but what about the loss of libido? In the study conducted in a peripheric urban area of Sao Paulo I mentioned before, women don’t think something like the loss of libido justifies the time and effort they would have to invest in scheduling a medical consultation and the researchers argue that even if they do so, they wouldn’t find a professional willing to listen to their sexual complaints. Even among my informants, women face the loss of libido with resilience, as if it was something they would expect at this age, or as if it was something they are not supposed to resist. Beyond the benefits for the symptoms of menopause and related chronic diseases, maybe that is something HRT could also challenge: the lack of attention paid to desire and sex in latter years of life. Not because women ‘need’ it, but because some of them want it.

 

 

 

[i] The Economist (2019, December 12). Managing Menopause: Million of women are missing out on hormone replacement therapy. https://www.economist.com/international/2019/12/12/millions-of-women-are-missing-out-on-hormone-replacement-therapy

[ii] Brasília Branch Office. (2002, July 12). F. de São Paulo.

https://www1.folha.uol.com.br/fsp/cotidian/ff1207200215.htm

[iii] Lopes, Cristina Garcia (2007). Integralidade na Saúde da Mulher – A questão do Climatério. Fiocruz. Fundação Oswaldo Cruz. Escola Nacional de Saúde Pública Sergio Arouca. Rio de Janeiro.

[iv] Handbook on Care of Woman in Menopause
Brasil. Ministério da Saúde. Secretaria de Atenção à Saúde. Departamento de Ações Programáticas Estratégicas. Manual de Atenção à Mulher no Climatério/Menopausa / Ministério da Saúde, Secretaria de Atenção à Saúde, Departamento de Ações Programáticas Estratégicas. – Brasília : Editora do Ministério da Saúde, 2008. http://bvsms.saude.gov.br/bvs/publicacoes/manual_atencao_mulher_climaterio.pdf

[v] Costa, Gabriela Maria C, Gualda, Dulce Maria Rosa. 2008. Menopause Knowledge And Experience For A Group Of Women. Rev Esc Enferm USP, 42(1), 81-9.

[vi] Trench, Belkis, & Rosa, Tereza Etsuko da Costa. (2008). Menopausa, hormônios, envelhecimento: discursos de mulheres que vivem em um bairro na periferia da cidade de São Paulo, estado de São Paulo, Brasil. Revista Brasileira de Saúde Materno Infantil8(2), 207-216. https://dx.doi.org/10.1590/S1519-38292008000200008

[vii] Pereira, Cláudia; Penalva, Germano. 2012. “Mulher-madonna” e outras mulheres: um estudo antropológico sobre a juventude aos 50 anos. IN: Corpo, Envelhecimento e Felicidade. Org. Mirian Goldenber. Rio de Janeiro: Civilização Brasileira.

[viii] National Policy for Integral Attention to Women’s Health
MS (Ministério da Saúde/ Secretaria de Atenção à Saúde/ Departamento de Ações Programáticas Estratégicas), 2004. Política Nacional de Atenção Integral à Saúde da Mulher – Princípios e Diretrizes. Brasília: Ministério da Saúde.
http://bvsms.saude.gov.br/bvs/publicacoes/politica_nac_atencao_mulher.pdf

 

‘If you are old, you invented the Internet’: A tribute to a senior geek

Marilia Duque E SPereira22 October 2019

I felt insecure about accepting an offer of website hosting from Dudu Balochini, who suggested we host the two websites we had developed together on his server at no cost. I asked him: “But what if you die?”. I was referring to my access to the servers, but he thought it was about his age since he was almost twenty years older them me (I’m 42). He then challenged me: “What if you die?” And that was how we laughed together and moved on. The first site we published together answered a need from the Center of Ageing Studies located at UNIFESP Medical School. Their researchers monitor the elderly population of a neighbourhood in Sao Paulo, and their studies include investigating the impact of physical activity on ageing. One of the interventions they made was to map out opportunities within walking distance for older people to exercise. This mapping was manually adapted to the address of each patient – a herculean task. But an informal survey showed that 70% of program-assisted seniors have smartphones. I had this information in mind when I met Dudu for a coffee. “Do you think we could make these activities accessible through Google Maps based on people’s location?”, I asked him. And he just said “I already know how to do that. I need two hours”. Twenty-four hours later, he produced the site we called Get Up and Go: nearby activities for the 60+. “I used the Store Location feature in WordPress, but it took me a while because it was blocked for developers from Brazil”, he apologised as though I thought he was late.

The second site is part of my delivery for the applied side of the ASSA Project – Anthropology of Smartphones, Smart Ageing and mHealth. With an ethnographic approach, I observed how WhatsApp was used for health purposes in Sao Paulo. I mapped the best practices and organised them into a set of protocols for communication within hospitals and clinics. I also developed a second set of protocols addressing nutritionists (obesity and being underweight are both health issues among older people in Brazil). Both materials are open-access and should be available for download. That is why I needed a website to publish them. This time, Dudu didn’t develop the website for me. “You’re going to become a SeniorGeek”, he told me. SeniorGeek is an initiative for digital inclusion of seniors created by him. At presentation events addressing older people, Dudu tried to demystify technological themes like Artificial Intelligence, Blockchain and Chatbots. He believed older people should know about those things or they would be cut off from conversation with children and grandchildren and, moreover, with society. Dudu also believed he could enable seniors to become digital entrepreneurs through courses that teach how to build a website, or an e-commerce or a blog. This is how I became his student. By myself, with the autonomy he wanted all seniors to achieve, I developed and published my WhatsApp manuals at http://www.saudeeenvelhecimento.com.br. In my field site, entrepreneurship gains strength among older people as a means of reintegration into the labor market. This is a consequence of the desire of many to remain productive but it is also their way to respond to corporate ageism. Dudu himself used to say he lived in a limbo: too old for the market, but not a “legal” senior yet.

Dudu was also a public figure. He was often in the media, giving interviews about the relevance of digital inclusion for seniors. At 58, he used to say, “If you are old, you invented the Internet. The problem is that people accommodated and forgot about it”. And he has a point. We just have to remember that Bob Kahn and Vint Cerf, creators of the TCP / IP protocol that enabled the Internet, are now aged 81 and 76 years old. However, ethnography showed me that this detachment from technology was also linked to retirement, when access to technology and needs in daily life change (Selwyn, 2004). Even so, Dudu’s speeches were inspiring and older people felt more confident because of him. Dudu died one week after I left my field site. An abrupt heart attack. On the one hand, he has achieved the death my informants desire the most: a death without illness or disease. I have written before about how my informants do not fear death. On the contrary, they see death as natural and even desire it when they think of the prospect of a future lived with physical, mental or financial limitations. On the other hand, it was an early death. Dudu was gone when he began to experience the purpose of life. I say experience because, among my informants, there is a feeling that the meaning of life is not something that can be explained by past achievements or by spiritual convictions. Therefore, they abandon philosophical reflections on the subject to focus on the present: they live today with purpose, filling daily life with pleasurable activities and, if possible, positively impacting the lives of those around them. Dudu brought these two accomplishments together in an intense agenda of events and courses.

And it was precisely the technology Dudu was so enthusiastic about that mediated his farewell. The news of his death spread via WhatsApp and was shared from group to group, giving rise to dozens of messages. Information about his funeral was also shared throughout the night, as well as information about the seventh day mass. For this last meeting, friends used WhatsApp again to prepare a last tribute. They have the idea to reproduce the “uniform” worn by Dudu, a black T-shirt, with the SeniorGeek logo. And during the days leading up to the mass, they spoke about how this production was made feasible all through their smartphones, as Dudu would like. The mobilisation was properly registered. And the pictures dominated social media again, now accompanied by the text “We are all senior geeks”. Dudu’s original WhatsApp group for his SeniorGeek initiatives was deactivated. A new one named “Senior Geek Connected” was created instead. It’s still a place where older people can find information about technology and new learning opportunities, keeping Dudu’s original idea alive. For him, above all, SeniorGeek was a manifesto against the invisibility of older people, something he believed only technology could solve.

 

 

 

 

Selwyn, N. (2004). The information aged: A qualitative study of older adults’ use of information and communications technology, Journal of Aging Studies, 18, 369–384

 

Pandora turned 70 and she just opened the box again. By Marília Duque

LauraHaapio-Kirk3 July 2019

Photo (CC BY) Marilia Duque.

Author: Marilia Duque

I am packing up to leave my field site after a 15-month ethnography with older people in Sao Paulo. One thing I learned is that a smartphone is not smart by default. Most of the time, especially for older people, a smartphone could be a stupid little thing that releases a new set of problems they now have to deal with, just like a Pandora’s box.

The character of Pandora can be perfectly represented by a 70-year-old lady I met who just received her box in the form of a gift from her son. This pandora’s box contained many gifts: a telephone, camera, calendar and computer and they were all hidden inside a Samsung Galaxy phone. Pandora’s husband warned her: “You should never turn this on. We are not supposed to steal technology from the youngsters”. Pandora then left the smartphone inside its box for weeks until she found out she was not invited to her old school annual reunion. The explanation they gave to her? “It was all set up through our WhatsApp group, dear”. In a mix of rage, sorrow and curiosity, Pandora immediately opened her smartphone’s box and turned it on.

As in the Greek myth, our Pandora also released some plagues and devils she now has to deal with. In her case, she faced fear, low self-esteem, and anxiety. She first experienced fear of breaking the device, fear of being charged for something she was not using, and fear of erasing something important, like the pictures of her youngest grandson’s swimming competition. She then experienced a lost of self-esteem because her smartphone’s display was set to sleep after just 30 seconds of inactivity and she just didn’t have the proper time to think about what to do before the screen turned off. And when she asked her son for some help, he simply had no patience to explain to her what was happening. Instead, he took her smartphone from her hands, reset the sleep mode to 5 minutes and gave it back to her saying “it is intuitive, even children are supposed to learn how it works”.  Pandora still doesn’t use her smartphone to its full potential, but a friend from her church has downloaded WhatsApp for her. She has finally joined her old school friends’ group and also her charity group, her meditation group and her family group. Now Pandora experiences anxiety because she has to manage so many messages that just keep coming without interruption. Pandora doesn’t understand that the connection is on 24 hours a day, 7 days per week, but she can choose not to be.

Curiosity was what made Pandora open her smartphone’s box and turn it on for the first time. But it is also curiosity which is the only thing that can save her. With curiosity (and with a little help from her friends), Pandora can dig deeper into her smartphone until she finds a solution – ‘hope’. It is hope that was left remaining in Pandora’s box. She will make ten mistakes for each thing she does right. She will be annoyed because she can enlarge the font size and the display size of her smartphone, but this will disrupt her WhatsApp screen lay-out and she will feel lost again. Even so, with time, she will become more confident to try new things and make new mistakes and learn with them. In doing that, Pandora will discover that one more gift was left inside her smartphone. Pandora will finally experience the smartness of her smartphone. A smartness that is only achieved in practice, when the smartphone provides a solution for someone’s need or desire.

Fear, low self-esteem and anxiety will still exist. But Pandora won’t have time to pay much attention to them. She is now checking Google Maps for the easiest way to go to a museum with her friends. She is deciding to take an Uber so she can improve her English with Duolingo during the trip. She is experiencing that fraction of smartness that makes her think that her smartphone was actually a gift from the gods to mankind. A gift she had the curiosity to open and the courage to keep it on.

Dependence is the new death

Marilia Duque E SPereira13 March 2019

Since the beginning of my fieldwork, I’ve been asking people about death and the meaning of life. I thought that on reaching old age, people would accept death more readily and that consciousness (or fear) of death would drive them to philosophical questions about life propose, finitude and legacy. Generally they do experience death more closely: their parents are sick or died a few years ago and so do some of their close friends. But besides their grief, death is not a big issue for them. Religion and spiritual beliefs seem to bring enough comfort and resilience to deal with the end of life and life after death. “I know I am mortal”, “Life doesn’t end here” and “It is a natural thing” are expressions they use when I ask them about death.

In The Philosophy of Ageing, Time and Finitude, Baars (1) argues that consciousness of death is not the only trigger that puts life in perspective. The author highlights that we frequently face extreme situations that make us abandon idols and ideals of what life should be. At those moments, there is just real life and a balance of the past that would give the present and future some meaning. To my informants, dependence became this trigger. Many of them see the loss of autonomy as a first death and some of them wish they could die at the exact moment when they become dependent on others.

On the one hand, they are not sure if their children will take care of them in later years. When I ask them, they answer that they don’t know or they don’t think so or they don’t expect them to. “Things are different now”, they explain. On the other hand, they don’t want to become a burden especially for their kids. Martha, for example, a 63 year-old woman who takes care of her children, had made up her mind. She already told her kids that if she had Alzheimers she would prefer to go to a clinic. “They don’t deserve this burden”, she said.

Like Martha, Linda is not afraid of death, but what comes “before death” is a different matter. She prefers to try to remain healthy as long as she can. In her 70s, she still runs marathons and takes special care of her diet and sleep. Regarding her kids, she believes this is her obligation “people who don’t take care of their health don’t deserve to stay alive”.

There are also people that just don’t want to lose the right to make decisions about their own lives. Maria for example is a very independent 67 year-old woman. She calls herself “bossy” when she talks about family decisions. “I can’t stand the idea that at a certain point in my life my children will think they can tell me what I can or can’t do”, she said.

If dependence is the new trigger for the consciousness of finitude, a good question to ask would be: what gives life a sense of purpose then? My first answer would be legacy. But what I found is that the past is not enough to fulfil life before dependence comes. As my colleague Pauline, who is conducting her fieldwork in Ireland, found out, my informants are more concerned with what they are doing today. They want to feel useful by learning new stuff, engaging with new projects, volunteering or filling their time with whatever they can. Their autonomy is their legacy and that puts life in perspective.

 

Reference:

Baars, Jan. Philosophy of Aging, Time, and Finitude. In: Thomas R. Cole, Ruth E. Ray and Robert Kastenbaum (eds), A Guide to Humanistic Studies in Aging: What Does it Mean to Grow Old?, The Johns Hopkins University Press, Baltimore, Maryland, 2010

 

Riámonos juntos

Marilia Duque E SPereira4 January 2019

Autora: Marilia Duque

Marilia (izq) con su amiga

Ya ha pasado un año de trabajo de campo y debo confesar que estoy aquí, riéndome sola al recordar todos los buenos momentos que pasé con mis informantes. Podría haber sostenido, al principio, que la mayoría de ellos estaban luchando contra los estigmas de la edad. Por un lado, eso quería decir que estaban haciendo lo mejor posible para ocultar sus limitaciones físicas con el fin de mantener su autonomía e independencia. Por el otro lado, eso también quería decir que estaba tratando de adaptarse al modelo del ‘envejecimiento exitoso’ (‘sucessful ageing’ en inglés), una imagen de adultos mayores respetuosos que gozan de buena salud, son productivos y tienen una intensa vida social. En verdad, están siempre alerta y luchando por su espacio, y esa resistencia puede dar lugar a una especie de auto-vigilancia, con cero tolerancia para con aquellos que intenten burlarse de los adultos mayores.

Ahora bien, basta esperar a que te acepten en el grupo, que se sientan cómodos con tu presencia y te sorprenderán. ¡Se ríen de la gente mayor todo el tiempo! Reconocen sus debilidades y se ríen de ellas. Es así que estaba en un evento con gente mayor la semana pasada, en el cual una señora mayor se llevaba todas las miradas, bailando con sus muy largos cabellos, cuando otra señora también mayor –y celosa– me suspiró al oído “le va a fallar el pañal para adultos mayores”. Después de un rato, cuando sirvieron el almuerzo y se formó una larga cola de gente mayor, uno de ellos dijo riendo “¿Cuál es la fila para ancianos? ¡Tengo prioridad!”. También hacen bromas sobre cuestiones como impotencia, pérdida de la memoria, sordera, insomnio y las dificultades que tienen con la tecnología. Se refieren con humor al tiempo que pasan en los hospitales, a todo lo que tienen que pagar con su seguro de salud, a cómo los jóvenes piensan que ellos son estúpidos, y a cuán cansados en verdad se sienten después de tener que haber fingido que no eran “tan viejos”.

Este año compartimos momentos increíbles en los que ellos no eran ‘adultos mayores’. Eran simplemente seres humanos enfrentándose a algunas dificultades en la vida y envejeciendo un poco cada día, tal como yo o cualquier otra persona.

Let’s laugh together

Marilia Duque E SPereira26 December 2018

Author: Marilia Duque

Marilia (left) with her friend

One year of fieldwork and I must say, I am here laughing alone whilst I remember all the good times I had with my informants. At first I could have argued that most of them were fighting against the stigmas of ageing. On one hand, it means that they were trying their best to hide their physical limitations in order to keep their independence and their autonomy. On the other hand, it also means they were trying to adapt to the model of successful ageing, the image of respectful old people who are healthy, productive and socially engaged. Yes, they are always alert and fighting for their space and that resistance can result in a kind of self-surveillance, with a zero-tolerance with those who try to make fun of old people.
But wait until you are accepted by the group, wait until they feel comfortable with your presence and you will be surprised. They laugh at old people all the time. They recognize their frailties and they make fun of them. I was at an event with old people last week, and an old lady was stealing the scene, dancing with her very long hair, when one jealous old woman whispered to me “her geriatric diaper will fall”. After a while, when the lunch was served and a long queue of old people had formed, one of them said laughing, “where is the senior row? I have priority”. They also make jokes of issues like impotence, lack of memory, deafness, insomnia and their difficulties with technology. They address with humour the amount of time they spend in hospitals, all they have to do to pay their health insurance, how young people think they are stupid and how they feel tired after they have to pretend they were not “that old”.
We shared incredible moments together when they were not old people anymore. They were just human beings facing some difficulties in life and getting old day after day, just like me and anyone else.

Alive and Kicking —by Marilia D. Pereira

LauraHaapio-Kirk28 October 2018

The “Work 60+” group after their weekly meeting. Photo by Marilia D. Pereira

A PwC study (2013) forecasted that in 2040 57% of the economically productive population in Brazil would be older than 45 years old. The research listened to 100 companies to analyze how they are preparing to absolve this contingent. The executives said that the main barriers to work with old people were their lack of flexibility, their difficult to engage with technology and their incapability to keep themselves up-to-date. As a positive aspect, they highlighted the opportunities that an intergenerational team can achieve and the fact that old people are more mature, ethical and loyalty. 

From my informants’ perspective, I can say that work is a key issue to their self-steam and sociability. The dream of being retired with full time dedicated to themselves last for one or two years. After that, they feel incomplete and sometimes angry or guilty. Some of they engage in social work as volunteers, as Mauro (71) who teaches dance classes to old people in a catholic parish or Cleo (63) who works once a week in a public hospital helping patients with heart diseases. Others feel they still have a lot of energy but want to try something new. Marta (59), for example, said that at her age she just couldn’t consider herself old, or useless. Because of that, after retiring as a teaching, she became a certificated tourist guide and plans to keep working until her “mind is fine”, and her “body is strong”. John (77) also wants to keep himself productive. He said he feels guilty not to be working during the business hours and he needs to complement his incomes after retirement. He works as a consultant, but he recognizes that “job offers are becoming more and more scarce”. Robert (64) explain that this is the way things work, “companies want the Youngs, so you will be replaced when you become old”. That is the reason why he stopped looking for jobs as a sales manager and started working as an independent realtor and as a Uber driver even after he retired. 

While companies are closing doors to old people, they are creating their own opportunities. Some of them are becoming entrepreneurs as Wania Barreto (63), who is launching a Telemedicine start up, or Veronique Forrat (61) and Marta Monteiro (64), founders at Morar.com.vc, a startup that works as a match-making for people who want to live in cohouses. The cohousing idea was born during “The Reinvention of Work 60+” program, created by Lab 60+ to prepare old people to what they call “the second half of their professional lives”. In practice, the reinvention of work means the reinvention of old people themselves. Their methodology focuses not in their past occupation but in their skills and talents and how they can be useful to market demands. The collective “Work 60+” was also created after this program. Every Monday around 20 people older than 60 years old meet at my field site to discuss how they can offer their expertise to companies in a flexible model of work, more empathetic, collaborative and with fair remuneration. As one of the group founders explain “no one here is looking for a job, we just want to keep working, we want to be part of the game, we know we still have so much to offer”.   

But what could they offer? If we consider that the population over 50 years old is responsible for more than 34% of the annual consumption in Brazil and that 57% of them consider they can’t find products and services that fit their needs, we could say their insights are more valuable than ever. After all, who could know better how to achieve what the silver market needs than the old people themselves?

The place of WhatsApp in the ecology of care

Marilia Duque E SPereira26 August 2018

Author: Marilia Duque

Dr. Gusso uses WhatsApp Business at Amparo Health Clinic (Photo: Marilia Duque)

In 2015 a PwC research report suggested that the Brazilian m-health market would reach $ 46.6 million while a GSMA report forecasted that 45.7 million Brazilians would benefit from mobile health projects (see here). In 2017 the scenario was even more optimistic. According to Statista, Brazil was expected to become the largest m-health market in Latin America with revenues of around $ 0.7 billion. These numbers explain the impressive amount of m-Heath startups and startup Incubators I’ve seen in Sao Paulo (see Eretz.bio, for example). But they don’t explain why after 7 months of fieldwork I still couldn’t find the people who are actually using these m-health apps. Instead, I found an intensive use of WhatsApp among my informants, filling the gaps in communication and making a huge impact on the ecology of care which we address in this project.

For example, every day early in the morning, Ms. M (54) sends a good morning message through WhatsApp to four lady-friends older than her. “It is like volunteer work because I know they are lonely and that message will make them happy and socially connected”, she explained. Ms. D (66) also starts her day sending a WhatsApp message. But in her case, the message is sent to her only daughter who lives in France, as a sign that she spent the night well. She is supposed to send this message every day before 10am otherwise her daughter will call a friend to check on her. “Some people say my daughter abandoned me, but the truth is that she is closer than many of my friends’ children who just live nearby”.

That is the same in the case of Dr. J., a physician who works in Sao Paulo and uses WhatsApp to take care of his 93 year-old father. After having a stroke, his father moved to Dr. J. brother’s house located two hours away.  Dr. J. created a WhatsApp group to talk to his brother and to his father’s caregiver. He gives her all the instructions she needs, and she updates him with information such as what his father ate, how he slept, how much water he drank, how much he exercised and how he was feeling. After a few months, he could tell how improved his father was and he explained how WhatsApp helped him and his family to feel safe and engaged.

Dr. K. also uses WhatsApp to provide care at distance. He works in my field site as a generalist providing ambulatory care to old people. WhatsApp allows him to give orientation about what to do when patients don’t feel well, and he can also ask them to go to his office if necessary. In many cases, he said, he can solve problems providing only care at distance. Dr. K. believes that the simple fact that the patients know they can use WhatsApp to contact him makes them feel safe and comfortable.

WhatsApp is also helping clinics to manage people’s health. Amparo Health, for example, is a clinic that uses WhatsApp Business to connect patients to doctors. The patient pays a monthly fee to have access to low-cost exams and to specialists like ophthalmologists, gynecologists, dermatologists, nutritionists and psychologists. What is new here is that all procedures and exams are coordinated by a generalist, who is available on WhatsApp. Dr. Gusso, the head physician at Amparo Health, explains that because the clinic business model is based on membership, they have no interest in demanding unnecessary exams or appointments. Doctors are paid by the hour and not by performance and that includes time to answer WhatsApp messages during the morning and afternoon. At the end of the day, he said, they are using WhatsApp to provide care at a distance, helping people to stay healthy, to feel safe and to save money. Prevent Senior, a health insurance company, also uses WhatsApp to make patients’ lives easier. In cases where treatments require on-going medication, patients can use WhatsApp to ask for new prescriptions. They can receive their prescriptions at home or they can go to the doctor office to get them, but with no need to schedule an appointment.

WhatsApp is the primary method of communication for 96% of Brazilians with access to smartphones. And among my informants older than 60 years old, that is also the app they use the most. Now imagine what can be achieved if WhatsApp features are explored to make the communication between health insurance companies, doctors, patients, caregivers, family and friends healthier too.

All mistakes allowed: my experience teaching older people how to use WhatsApp

Marilia Duque E SPereira25 June 2018

Author: Marilia Duque, São Paulo.

Since March this year, I’ve been working as a volunteer in one of the WhatsApp courses provided by a Catholic Parish in my field site in São Paulo. Once a week, I meet around 10 students from 67 to 84 years old who are deeply committed to improving their WhatsApp knowledge and usage. Most of them report that their children don’t have the patience or the time to help them with their smartphones. They understand that their children work hard and have many other commitments in their adult lives. They don’t want to be a burden to their families. So they opt for a regular course[1]. As one of my students Mrs. O. (71) puts it “considering all of that, do you think I would bother them?”

We started our classes as a very heterogeneous group with people who had never used WhatsApp before and people who already pay bills, buy stuff and book flights using their smartphones. After conducting interviews with some of them, I would say the group could be classified in two key categories: the ones who are afraid of  “being overcharged”, “erasing some important information” or “pushing the wrong button” and ruining the device itself and the ones who are disposed to take more risks, using trial and error as method, without any concern about spoiling the device. According to the survey Tech Adoption Climbs Among Older Adults  (Pew Research Center, 2016), lack of confidence is one of the main barriers that can “hinder some old Americans from going online and using new technologies”. One third of seniors feel little or not at all confident when using electronic devices (including smartphones) and because of that feeling three-quarters of them say they need help to set up and start using a new device.

One of my students, Mr. M. (72), said this fear of making mistakes is the key difference between old and young people. If youngsters say something wrong, they laugh at themselves, because they are allowed to make mistakes. However people are not so tolerant with older adults. Because of that, he said, many of his friends feel so embarrassed when they fail that they became too scared to even try. But what could be achieved if all this fear is gone? According to the same Pew Research Center study, once the seniors go online, they engage “at high levels with digital devices and content”. Among older adults who own a smartphone, for example, 76% uses the Internet several times a day or more.

In my WhatsApp course, as the group became more comfortable in making mistakes, I might say they learn more and faster. They now know almost everything about WhatsApp main features: how to create a group, how to share a picture, a video, a contact or a location, how to manage WhatsApp downloads to save data, how to use WhatsApp web. They also learned some tricks a regular WhatsApp user might ignore. For example, each student now has his/her own contact in his/her WhatsApp, so they can send notes (voice and text) to themselves to remind them what to report to a doctor, what to buy at the supermarket and so on. It is great but not enough. They want to go further, so now we just decided to move forward with other apps.

After all, my challenge now is to cater to so many different interests and needs related to smartphones. As my colleague, Alfonso Otaegui, who is also volunteering in smartphone courses in Chile, said in his previous post here, old people have different expectations of smartphone usage. As a teacher, this might help me make more effort to show empathy in class. As an ethnographer, this represents a great opportunity to understand how their particular needs and curiosity about pictures, books, music, travel, languages, cooking and shopping apps reflect the very particular way each of them experience age and how smartphones can help them to get what they want.

[1] If we consider the POnline2017 Survey from Acessa SP, an initiative for digital inclusion in São Paulo that provides free access to internet and many free courses to help users to improve their digital skills, over 70% of respondents learned to use the internet by themselves or attending to courses and just 4% could count on their relatives’ help.

From smartphones to target phones

Marilia Duque E SPereira26 April 2018

Author: Marilia Duque

Photo (CC BY) Marilia Duque

Helen, a 67-year-old woman, was frustrated when she couldn’t show me all the pictures of her grandchildren that she keeps on her smartphone. “I came here with nothing. It is not safe”, she said. We were talking at a large square where people come to walk and exercise every day. Curiously, the place is also one of the 200 points with free WI-FI provided by the City Hall in São Paulo. Like Helen, many people who I’ve been talking to mentioned that they don’t feel comfortable using their smartphones in public spaces. Most of them agreed it is not safe to make and receive calls or to text on the streets. And they have good reason to be scared.

The number of robberies involving mobile phones represented 65.1 % of all robberies registered by the police in São Paulo in February of this year (percentage over total robberies involving documents, money, and mobile phones). According to the journal “O Estado de S. Paulo”, half of the streets of São Paulo had at least one mobile phone robbery reported from 2016 to 2017. I talked to 60 people in my fieldsite during this month and the numbers are also impressive. More than half of the informants had a smartphone stolen at least once or have someone in their family who experienced this. Because of that, people are creating different strategies to protect themselves and their smartphones in public spaces. For example, Lucy (65) said she would never answer a call on the street: “I just let it ring”. Lilly (67) makes some exceptions: “I take a quick look inside my bag. If it is one of my children who is calling I just go inside one of the stores on the street, so I can answer the call”. Jonas (56) doesn’t have children but accepts emergency calls only after he gets inside some safe space, like a coffee shop or mall. I have found more people who choose to leave their smartphones at home as a strategy to avoid violence: “I won’t risk my life”, one of the informants told me.

Photo (CC BY) Pixabay

People who have never had a mobile phone stolen or who don’t have a relative who did, feel lucky or blessed. Some of them also believe they haven’t been stolen because their devices are too old (they don’t have a smartphone), like one of my informants said: “Nobody wants that. They would probably say to me to throw it away as garbage”. That is not the case of Marcus (60). He already has a smartphone, a two-year-old one. But when I asked him when he was planning to buy a new one, he answered: “The next time someone steals mine”.

When I started my fieldwork, I thought the cost of service and the high rate of illiteracy (24% of the population older than 60 years) could be the two main barriers for the development of m-health initiatives for elderly people in Brazil. But security has became one of the key issue I will need to be aware of from now on. The strategy to leave the smartphone at home, for example, can invalidate two potential functionalities m-health apps can provide. The first is reminding elderly people to take their medicines correctly. According to Silva, (Schimidt and Silva, 2012), 40% to 75% of old people don’t take medicines at the right time or in the right dosage. The second is to contact relatives in case of a fall: one functionality provided by the apps Elderly Help or Mobil-SOS Be Safe, for example (Souza and Silva, 2016). All these advantages can be lost if elderly people just don’t feel safe enough to take their smartphones wherever they go. As one of my informants told me “if you have white hair, you are already a target”.

References:

Silva, R; Schimidt, O.; Silva, S. (2012). Polifarmácia em Geriatria. Revista AMRIGS 56 (2): p. 164-174.

Souza, C.; Silva, M. (2016). Aplicativos para smartphones e sua colaboração na capacidade funcional de idosos. Revista Saúde Digital, Tecnologia e Educação 1 (1): p. 06-19