Old Blog page – Ruth De Souza

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I have spent most of my career working with birthing people. I will declare at the outset that I am interested in a critical, holistic, lifespan approach to reproductive and sexual health, rather than a biologically deterministic view. Just as the transition into birthing can be fraught, biologically and socially (when the birth plan gets thrown out), so can the transition out of being a birthing person. There is a difference though. The former is largely accompanied by rituals, celebration, and joy. The latter not so much, maybe because birth is a future-focused event, while menopause is a slower less predictable process (or an event if surgically induced) that is overlayed with ageism and sexism or as Leah Lakshmi Piepzna-Samarasinha says in What Fresh Hell Is This?: Perimenopause, Menopause, Other Indignities, and You “menopause is kind of a collision course with parts of the patriarchy and sexism and oppression”. In many cultures, it marks a transition to valued roles but in the dominant white culture where I’ve spent most of my life, cultural messages suggest that the menopausal person no longer has any social value, their value is in the past and not the future. No longer beautiful or desirable, no longer useful or productive (Atkinson et al., 2021), instead a transition marked by degeneration, deficit, atrophy, and entropy. There’s no party, no gifts, no cards, and no supply of casseroles to mark the liberation from periods, or societal strictures. The silence extends beyond the social to the informational. There are few apps and a million fewer self-help books.

The solution to managing both birth and menopause in neoliberal white settler colonial societies like Australia and New Zealand, is individualized rather than structural. Healthist and responsibilization discourses circulate and permeate the performance of intensive motherhood in the perinatal period and or being an “agile worker” during both, where bodily functions and evidence thereof are supposed to remain hidden (Atkinson et al., 2021). If one simply obeys the health advice to “take care of oneself” that is drink less alcohol, eat carefully, exercise regularly, etc, then you’ll reduce the risk of X and feel better. Never mind whether you are in precarious work, or housing, are poor, a carer, Indigenous, or a person of color. The representations of menopause are typically “pale and professional” and assume that everyone has the same unbridled access to resources.

The theme for March has been aging and menopause. First, I was on a panel on menopause with Dr Sonia Davison, Endocrinologist at the Jean Hailes Medical Centre and past President of the Australasian Menopause Society; Grace Molloy, co-founder and CEO of Menopause Friendly Australia and Genevieve Morris, comedian, actor and improvisor. It was organised by the City of Melbourne and MCed by the brilliant Nelly Thomas.

I also hosted a webinar for Women’s Health Victoria about codesign with marginalised groups and digital health resources. Their codesigned digital health promotion resource In My Prime, brings together accessible and evidence-based health and wellbeing information on topics relevant to women over 50, from menopause to financial security. The site also features an online exhibition of photographs of nude trans and cis inclusive women taken by photographer Ponch Hawkes. The stellar panel included: Michelle McNamara, Treasurer, Transgender Victoria & In My Prime advisory group member, Vicki Kearney, Women with Disabilities Victoria and Victoria’s Experts by Experience Research Project participant, Catalina Labra-Odde, Research, Advocacy and Policy Officer at, Multicultural Centre for Women’s Health and Associate Professor of Public Health Jacqueline Boyle Director of Health Systems & Equity at Eastern Health Clinical School, Monash University.

I am so glad that the conversations about aging and menopause are taking place. It’s really heartening to know that organisations like the Australasian Menopause Society Limited (AMS) made up of healthcare professionals with a special interest in women’s health in midlife and menopause have accurate, evidence-based information for healthcare workers and the wider community, including helping you find a doctor near you who understands menopause. Jean Hailes has fabulous accessible information on menopause and Health Talk have comprehensive resources on early menopause. Women’s Health Victoria have partnered with Professor Martha Hickey from The University of Melbourne, and people with lived experience to co-design In My Prime, a health and wellbeing resource for women over 50 (with medical information reviewed by clinical experts) which includes comprehensive resources on menopause, cardiac health, brain health and much more. It also articulates a clear aim, which is to address gendered ageism in healthcare. You can find fact sheets on menopause and women’s health translated into several community languages and videos explaining menopause, subtitled in Vietnamese, Cantonese, and Mandarin on the International Menopause Society website. It is also pleasing to see research including other populations, for example Vietnamese women in Melbourne.

I am nervous about assuming that because there is more talk, more information about menopause or destigmatization of it, we might assume that “everyone” with ovaries is being included in the conversation. There’s a valid critique that representations of menopause typically center the “pale and professional” leaving out queer, trans, intersex, non-binary, poor, First Nations, and People of Colour, all of whom might have different experiences of menopause (Jermyn, 2023, and Riach, 2022). Equally these groups may experience multiple layers of inequality well before before they even try to get their needs met in the health system. They might experience racism, ableism, classism, and cisgenderism, in the world which might impact their trust in health services to help with perimenopausal symptoms. Organizations like Menopause Friendly Australia are trying to introduce “menopause-friendly” accreditation standards, but workplace environments, policies, and procedures tend to be skewed towards white, middle-class professional women, hence the need for an intersectional lens (see the wonderful work that Multicultural Centre for Women’s Health does in this space). The longitudinal Study of Women’s Health Across the Nation (SWAN), which began in 1994 has followed 3,000 women in perimenopause and menopause and found that Black and Hispanic women reach menopause earlier than white, Chinese and Japanese women. Black and Hispanic women experience certain menopausal symptoms for almost twice as long as do white, Chinese and Japanese women. There is also increasing evidence of health disparities in midlife between Black and White women largely due to structural racism.

The lack of culturally safe or “affirming healthcare encounters” (Riach, 2022) contributes to the so called menopause ethnicity gap. Barriers to accessing menopause advice or taking up Menopause hormone therapy (MHT) also known as hormone replacement therapy (HRT), leading to under-diagnosis, misdiagnosis, or delayed diagnosis. In Australia, A report from the 2023 National Women’s Health Survey, titled The impact of symptoms attributed to menopause by Australian women by Susan Davis, Vicki Doherty, Karen Magraith and Sarah L. White recommendations include: “Greater action is urgently needed to work with priority populations, particularly diverse Aboriginal and Torres Strait Islander communities, to understand their knowledge and information needs and co-design culturally intelligent health promotion approaches to better manage menopause symptoms and seek care when required.”

In research about migrants, difficulty navigating the health system and adhering to healthist discourses and health promotion edicts, often struggling to access services or find health professionals that they trust. Different communities and families will also have different views about menopause, ranging from menopause just being part of living and requiring no special preparation or support, while in others, patriarchy and a lack of access to information may make menopause stigmatized. When people from migrant backgrounds eventually access their General Practitioner they might not find someone experienced in menopause care, or who is culturally competent or safe. Unmanaged menopause symptoms like vasomotor symptoms (flushes and sweats) being associated with an increased risk of coronary heart disease, and impact a person’s mental health and quality of life. Other barriers identified in the Multicultural Centre for Women’s Health excellent first issue of the WRAP (Migrant and Refugee Women’s Research, Advocacy and Policy for 2024 include the exclusion from Medicare of those on a temporary visa, which means that temporary migrants are not eligible to receive subsidized medications and treatment. People on limited incomes might also find the cost of these treatments out of reach even though they are available on the Pharmaceutical Benefits Scheme (PBS) preventing some migrant women from achieving optimal menopausal health.

I am not altogether convinced that health literacy and better health information are remedies in and of themselves. As Nelly our comedian MC quipped “Just because I can understand my body better, does not mean that I can control it”. I think instead the answer might be community. A community of health professionals who can work holistically around a person and escape the machine view of the body, and medical siloes. A community of peers, or inter-generational chosen family who might have time for slow, deep, and long conversations that could nourish and inform. I’m a bit biased since I am now a podcaster, but I’m pleased at the proliferation of alternative voices like Menopause Whilst Black hosted by Karen Arthur, Omisade Burney-Scott’s Black Girl’s Guide to Surviving Menopause” podcast, Dr Nighat Arif a GP in the UK, The My Bloody Hell podcast Episode 9:How Race, Ethnicity & Culture Impact Menopause and Why it Matters. There are also bigger conversations happening including the Senate Inquiry into the physical, mental, economic, and financial impacts of menopause and perimenopause. I also recommend What Fresh Hell Is This?: Perimenopause, Menopause, Other Indignities, and You by Heather Corinna which broadens the menopause lens to include people with disabilities; queer, transgender, nonbinary, and other gender-diverse people; BIPOC; working class and other folks. Jen Gunter in a similarly inclusive publication calls menopause, a time of reproductive reckoning that requires not buying into the patriarchal gaslighting that sees older people with ovaries as having diminished value. Not entropy and atrophy (see Juicy Crones by Jay Courtney), but value. Valuing the age and knowledge that older women have and finding ways to be informed about this transition and making structural change. It will take all of us to do this, just as birthing does.

Useful references
Atkinson, C., Carmichael, F., & Duberley, J. (2021). The Menopause Taboo at Work: Examining Women’s Embodied Experiences of Menopause in the UK Police Service. Work Employment And Society, 35(4), 657–676. https://doi.org/10.1177/0950017020971573
Downham Moore, A. M. (2022). The French Invention of Menopause and the Medicalisation of Women’s Ageing: A History. Oxford University Press. https://doi.org/10.1093/oso/9780192842916.001.0001
Ilankoon, I. M. P. S., Samarasinghe, K., & Elgán, C. (2021). Menopause is a natural stage of aging: a qualitative study. BMC Women’s Health, 21(1), 47. https://doi.org/10.1186/s12905-020-01164-6
Jermyn, D. (2023). “Everything you need to embrace the change”: The “menopausal turn” in contemporary UK culture. Journal of Aging Studies, 64, 101114. https://doi.org/10.1016/j.jaging.2023.101114
Li, Q., Gu, J., Huang, J., Zhao, P., & Luo, C. (2023). “They see me as mentally ill”: the stigmatization experiences of Chinese menopausal women in the family. BMC Women’s Health, 23(1), 185. https://doi.org/10.1186/s12905-023-02350-y
Mattern, S. (2019). Part III. Culture. In The Slow Moon Climbs (pp. 255–366). Princeton University Press. https://www.degruyter.com/document/doi/10.1515/9780691185644-005/html
Riach, K. (2022, October 18). Menopause can affect every workplace – here’s how to start supporting every worker experiencing it. The Conversation. http://theconversation.com/menopause-can-affect-every-workplace-heres-how-to-start-supporting-every-worker-experiencing-it-192711
Riach, K., & Jack, G. (2021). Women’s Health in/and Work: Menopause as an Intersectional Experience. International Journal of Environmental Research and Public Health, 18(20). https://doi.org/10.3390/ijerph182010793
Stanzel, K. A., Hammarberg, K., Nguyen, T., & Fisher, J. (2022). “They should come forward with the information”: menopause-related health literacy and health care experiences among Vietnamese-born women in Melbourne, Australia. Ethnicity & Health, 27(3), 601–616. https://doi.org/10.1080/13557858.2020.1740176

“…the neo-liberal academy has compelled me to compete and compare, to work on my own, to overwork, and to count narrowly. At various times, neoliberal ideologies have crept into my mind/writing/body, breaking me down. The academy’s “finite games” of winners and losers, the demands to prove I am a “credible academic”, the narrow counting and the changing and hardening rules of entry have kept me running on the production treadmill, frequently distracting me from what matters most” (Harré et al., 2017, pp. 5, 9).

I am a serial book chapter reader and writer. If you check out this link, you’ll see I have written a fair few. Writing a book chapter seems less daunting than trying to write a whole book, and less prescriptive and intimidating than journal articles because I can more easily imagine the reader. It may be a student or someone from my academic or professional community, but I have a sense of their ethical and political commitments. In quantified academia, research activity and impact are crucial to academic promotion/tenure and research funding. In my field of health, peer-reviewed journal articles are the gold standard. When I think like a ‘professional’ academic I sometimes wonder if book chapters are ‘worth’ writing. So much of “successful” knowledge production depends on your discipline, your structural location (not only whether you are tenured or precarious, but also whether you have a marginalised identity/ies or work in a marginalised field), your preferences for dissemination or contribution in terms of who you write for, and how ambitious you are, so it’s political as well. None of this is helped by the ways in which academia is still predicated on being an exceptional competitive individual which can preclude more contemplative kinds of collaboration (Black, 2022). In the Gigiversity, there’s also what Mark Carrigan calls temporal budgeting which can be a barrier to writing as a creative process. Writing becomes calculated, something that has to be accounted for, and made time for.

I am not immune from living a calculated life. I recently said no to an invitation to write an academic book chapter (and I am still ambivalent about this) because of the opportunity cost, not because of wanting it published in a journal where it would “count” more, but because my career is now based on consulting, so the time I spend writing without payment means not getting paid. You can read more about the reasons not to write book chapters in this blog by Adam Chapnick. I have also co-edited a book Researching with Communities: Grounded perspectives on engaging communities in research, supposedly a huge no-no, but that’s for another blog. Rasmus Nielsen’s conceptualization of the value of the book chapter genre is helpful (1) argumentative chapters, (2) trailer chapters, and (3) review chapters. In the first category, a book chapter can help to think through an argument in an interpretive and personal way; and the second category where you operationalize the underlying concerns for another project is where my work has typically landed. I save the third for journal articles. So why even write book chapters? Here are some of my reasons.

As a reader and scholar, anthologies have saved me as a person of color. This Bridge called my Back and later Black British Feminism edited by Heidi Mirza, which I devoured avidly in a largely monocultural academic New Zealand are just two examples. As an author Sara Ahmed, says that the Mirza book was pivotal to a broader political identity and that being part of “a collection can be to become a collective” (Ahmed, 2012, p.13). Younger me would have been so thrilled to get my hands on Towards a Grammar of Race In Aotearoa New Zealand edited by Arcia Tecun, Lana Lopesi and Anisha Sankar. Covering all the things younger me was living through but had no vocabulary for, things like racial capitalism, colonialism, white supremacy, and anti-Blackness.

More elegantly and evocatively, my friend and podcast guest extraordinaire Alice Te Punga Somerville writing from Musqueam whenua, offers many metaphors for the collectivity of edited books, as food, as gathering, as connected across time and space, tantalising and replenishing. She adds (in discussing a new edited book by Kiri Piahana-Wong and Vaughan Rapatahana) “Māori have always been collective with our writing: so many anthologies, collections, joint readings, festivals, hui, organisations, writing groups, one-off collectives, roopu… this one draws consciously on the Into the World of Light/ Te Ao Mārama anthologies called into being by Ihimaera and others… but all of these Māori literary awa are part of a massive network of tributaries and streams and gorges and brooks and braided rivers and underwater culverts and, yes, all the way out to open ocean…she concludes “slurping down this awa which is replenishing and exciting me… and loving this hui with writers known by my heart, writers I have long admired from afar, and writers I have yet to meet.”

These relationships and collaborations are such a good reason for writing book chapters. Helen Kara who I enjoy for their interest in creative methods values the sense of community or social network that can accompany an edited book when there is a clear theme and the authors richly complement each other, which cannot be achieved with a single or co-authored book. It’s what Debra Brian says is a plus for the reader — “they often capture an important moment in the history of the discipline, or an opportunity to bring together multidisciplinary takes on a central theme.” I have recently had a chapter on racism and care published in No longer silent: Voices of 21st Century Nurses edited by Lesley Potter with support from the Australian College of Nursing. It is envisioned as a snapshot of contemporary nursing in Australia. Here’s a short excerpt:

There is trepidation and vulnerability that accompanies naming racism, rather than the more palatable good feeling word diversity (De Souza, 2018). Discourses of diversity and inclusion are what Ahmed (2012) describes as ‘non-performative institutional speech acts’ meaning that just their use as words do not necessarily change what it is they are naming Ahmed, 2012, p. 119). Racism is so direct, so harsh in the text as opposed to toned down with my good humor or the self-effacing charm I have cultivated as a bolster. I am a nurse who migrated to Australia post PhD for work in academia. As a person of color or brown settler, I occupy a position of unease and anxiety, uninvited living on stolen land, in a country where relationships between Indigenous people, settlers and migrants are contested. I am also privileged to be a mobile, highly educated researcher working in the prestigious context of a University. As (Moreton-Robinson, 2007, 2015) quips, the White nation-space of so-called Australia, excludes both Indigenous people and non-British people. However, I invoke this process of critical reflexivity and locate my own positionality to account for myself and for my writing. A person with ancestral heritage in Goa, India but whose personal and familiar multiple migrations, have been shaped by colonization. I provide these histories and geographies to account for how I write, they provide me with a specific set of ethical and political commitments that aim to contribute to making nursing a profession that is less discriminatory and more equitable for both those who follow me and those we purport to serve. I care about nurses and nursing and am troubled by the paradox that a profession that claims to care could be implicated in perpetuating inequities for some populations. This stance of critique and the desire for accountability may make what I write seem particularly critical, however, it also reflects a deep investment in the nursing profession.

Changes in models of publishing have also made writing book chapters more worthwhile Patrick Dunleavy says in an LSE blog. Dorothy Bishop admits her best writing is in book chapters where she has had the freedom to integrate broad perspectives, but argued in the past that writing a book chapter was like burying your work because of difficulties in trying to access and cite work. However, now that e-book chapters are becoming as discoverable, and more affordable, the reader or potential citer no longer has to pay massive prices for books that are just as easy to find as journal articles. Individual chapters have become easier to use in teaching, as they can be added to reading lists on learning management systems (LMS). I have added a book chapter on Cultural Safety I co-wrote for the book The Relationship is the Project for a lovely intensive course I’ve been teaching in the School of Art with Alan Hill and Jody Haines at RMIT University called Creative Practice in Place: Working on Unceded Lands. Interestingly the chapter has been reprinted online in two different contexts, in Arts Hub as Taking action for Cultural Safety and republished in Spotlight, the Arts Wellbeing Collective magazine which makes it more accessible. However, access does not equal citations, so even if they are used in essays or theses, they may not show up in citation metrics.

Book chapters open up different formats and creative options compared to journal articles, which is why one of my favorite academic bloggers Pat Thomson who blogs at Patter writes them. Another favorite blogger Agnes Bosanquet writes In defence of book chapters that book chapters let you publish “something experimental, fun and adventurous” and you can take more “risks with style, structure and method”. Concluding that “when I want to write in the company of others, flex my writing muscles in new ways, and find pleasure in the craft of writing, then book chapters are a gift”. Historian Zora Simic says “I find them a more liberating form than a journal article and some of that is because of the way I think – journal articles typically demand an argument that is pursued in coherent fashion whereas I prefer ambiguity, open and loose ends, experimentation, and exploration for the sake of it.” This desire to write playfully and creatively resonates with me. There’s also a pragmatic freedom that Thomson identifies. Firstly, because your chapter is part of a collection, you do not have to do as much prefacing and situating as you would in a journal article. and secondly, you do not have to convince people to read the chapter because the editors have already done that work for you.

Viewing a field through a different lens is another reason to write a book chapter, providing a way in which students or practitioners can get a feel for a topic, its scope and debates. Elaine Swan adds “I recommend them to students as they can see how a topic can be understood through different concepts and methods.” Scholars like Carol D’Cruz find the breadth of the approaches to tackling the same issue appealing: “I love variety in the perspective and approach in edited collections, especially when all answering the same/similar problem.” Some writers also appreciate the opportunity to learn, to use their experience in another context, like Zora Simic who says “Once I responded to a call for contributions to a book called Fat Sex. I’d always wanted to know more about the history of fat activism/feminism and this was the perfect opportunity. It had nothing whatsoever to do with my other research, apart from being about feminism. But I loved writing and researching it.”

Leaving your mark in a field is another drawcard. Debra Brian contends saying yes to a book chapter “can signal your commitment and standing in the field, your academic social capital, etc — and it can bring other opportunities. Sometimes it is worth doing for the sake of collaboration and relationships and the opportunity to find a home for something that needs to be said but doesn’t really ‘fit’ in another format.” This really rang true for me in my contribution to Jessica Dillard-Wright’s book Nursing a Radical Imagination: Moving from Theory and History to Action and Alternate Futures co-edited with Jane Hopkins-Walsh and Brandon Brown where I wrote about creative methods in nursing education. We’ve subsequently collaborated on a number of other projects, Jess (and Jane) contributed an artwork for our exhibition and course for The Big Anxiety Festival, and did a Zoom guest lecture to art students. We have also just cowritten No as an act of care A glossary for kinship, care praxis, and nursing’s radical imagination Jessica Dillard-Wright, Favorite Iradukunda, Ruth De Souza, and Claire Valderama-Wallace in the tome Routledge Handbook of Philosophy and Nursing Edited By Martin Lipscomb. I feel deep gratitude for the friendship that has evolved between us in the process of talking and writing (a non-academic benefit (Tom Pepinsky) of writing book chapters)! Here’s the abstract:

Radical imagination and the transformations that ensue are fundamentally collaborative, connected, and conscious. In an effort to first imagine and then co-create a more just, equitable present/future for nursing and those with whom we care in the spirit of radical imagination, this chapter examines nursing care as praxis and the shifts that occur in embracing kinship as a reciprocal model for nursing. In so doing, we challenge embedded power structures within the healthcare-industrial complex – and thus nursing – as we currently know it. Using feminist, queer, anti-colonial, anti-imperialist, and abolitionist insights, we imagine a present/future for nursing liberated from the capitalist political economy entrenched in a boundless society of control. This speculative vision is urgent, encompassing, and material, bursting open the boundaries of nursing as we consider with whom we align and how we build toward a future on a deteriorating planet.

Obviously, academics have to be strategic about writing but I also write because writing helps me make sense of things. I write to think, just as I speak to think. The former is far more laborious for me but I am getting better at it. Book chapters allow me to play, to experiment, and to feel part of a community, a collective and that is hard to beat.

VALA Libraries, Technology and the Future invited my fabulous colleague from Melbourne University Fiona Tweedie and I to participate in a webinar discussion as part of Open Access Week. The webinar was hosted by VALA President, Katie Haden. VALA are an independent Australian based not-for-profit organisation that aim to promote the use and understanding of information technology within libraries and the broader information sector.

Is “Open” always “Equitable”?

The theme for Open Access Week for 2018 is ‘Designing equitable foundations for open knowledge.’ But open systems aren’t always set to a default of ‘inclusive’, and there are important questions that need to be raised around prioritisation of voices, addressing perpetual conscious and unconscious bias, and who is excluded from discussions and decisions surrounding information and data access. There are also issues of the sometimes-competing pressures to move toward both increased openness and greater privacy, the latter issue having much currency in the health domain (and more broadly) at present.

If we default to inclusive, what does that look like?

How do we address conscious and unconscious bias?

How do we prioritise voices, identify who is included and/or excluded from discussions?

How do we address the pressure to move toward both increased openness and greater privacy, particularly in the area of health data?

You can download the mp4 file of the webinar, or read a summary of what I had to say below.

Most of what I have learned about how to be a good nurse has come from the consumers I have worked with in my clinical practice. I think the people that live most closely to a phenomenon have a unique microscopic vantage point and that as a researcher and clinician, complementing this lived experience with a telescopic view allows us to see both the big picture and the lived experience. Similarly, my experience of innovations in health have been consumer driven: the initiation of text reminders in a health organisation I used to work for because newly arrived Sudanese women asked for it; health promotion activities that included fun and community building, because Pasifika people in South Auckland wanted something more communal. So I am interested in the emergence of data and technology as democratising enablers for groups that experience marginalisation. Consumers with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) who challenged the influential £5m publicly funded PACE trial which shaped research, treatment pathways and medical and public attitudes towards the illness are an example of how making data open and transparent can be transformative.

The PACE trial found that Cognitive Behavioural therapy (CBT) and Graded Exercise Therapy (GET) achieved 22 percent recovery rates (rather than just improvement rates) as opposed to only seven or eight percent in the control groups who did not engage in CBT and GET. The findings contradicted with the experiences of consumers, who suffered debilitating exhaustion after activities of daily living. A five year struggle by Australian Alem Matthees and supported by many scientists around the world who doubted the study’s conclusion resulted in Queen Mary University of London releasing the original data under the UK Freedom of information (FOI) Act at a cost of £250,000. When challenged about the distress that this had caused patients with ME/CFS the researchers claimed to be concerned about the ethics of sharing the data. However, Geraghty (2017) points out:

did PACE trial participants really ask for scientific data not to
be shared, or did participants simply ask that no personal identifiable information (PIIs) be disclosed?

Subsequent reanalysis showed recovery rates had been inflated and that the recovery rates in the CBT and GET groups were not significantly higher than in the group that received specialist medical care alone. One of the strategies for addressing the lack of transparency in science is to make data open (particularly if another £5m is unavailable to reproduce the study), sharing data, protocols, and findings in repositories that can be accessed and evaluated by other researchers and the public in order to enhance the integrity of research. Funding bodies are now increasingly making data-sharing a requirement of any research grant funding.

https://forbetterscience.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/ — By Leonid Schneider

This story captures the value proposition of making health data open, it can: hold healthcare organizations/ providers accountable for treatment outcomes; help patients make informed choices from options available to them (shared decision making); improve the efficiency and cost-effectiveness of healthcare delivery; improve treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent; be used to educate patients and their families and make healthcare institutions more responsive; fuel new healthcare companies and initiatives, and to spur innovation in the broader economy (Verhulst et al, 2014).

The growing philosophy of open data which is about democratising data and enabling the sharing of datasets has been accompanied by other data related trends in health including: big data-large linked data from electronic patient records; streams of real-time geo-located health data collected by personal wearable devices etc; and new data sources from non-traditional sources eg social and environmental data (Kostkova, 2016). All of which can be managed through computation and algorithmic analysis. Arguments for open data in health include that because tax payers pay for its collection it should be available to them and that the value of data comes from being used by interpreting, analysing and linking it (Verhulst et al., 2014).

According to the open data handbook, open data refers to:

A piece of data or content is open if anyone is free to use, reuse, and redistribute it — subject only, at most, to the requirement to attribute and/or share-alike.

Usually it has three main features:

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must be available in a convenient and modifiable form.

Reuse and Redistribution: the data must be provided under terms that permit reuse and redistribution including the intermixing with other datasets.

Universal Participation: everyone must be able to use, reuse and redistribute – there should be no discrimination against fields of endeavour or against persons or groups.

Central to which is the idea of interoperability, whereby diverse systems and organizations can work together (inter-operate) or intermix different datasets.

Here are two useful examples of open data being used for the common good. The first concerns statins, which are widely prescribed and cost more than £400m out of a total drug budget of £12.7 billion pounds in England. Mastodon C (data scientists and engineers), The Open Data Institute (ODI) and Ben Goldacre analyzed how statins were prescribed across England and found widespread geographic variations. Some GPs were prescribing the patented statins which cost more than 20 times the cost of generic statins when generics worked just as well. The team suggested that changing prescription patterns could result in savings of more than 1 billion pounds per year. Another study showed how asthma hotspots could be tracked and used to help people with asthma problems to avoid places that would trigger their asthma. Participants were issued with a small cap that fit on a standard inhaler, when the inhaler was used, the cap recorded the time and location, using GPS circuitry. The data was captured over long periods of time and aggregated with anonymized data across multiple patients to times and places where breathing is difficult, that could help other patients improve their condition(Verhulst et al, 2014).

Linking and analysing data sets can occur across the spectrum of health care from clinical decision support, to clinical care, across the health system, to population health and health research. However, while the benefits are clear, there are significant issues at the individual and population level. In this tech utopia there’s an assumption of data literacy, that people who are given more information about their health will be able to act on this information in order to better their health. Secondly, data collected for seemingly beneficial purposes can impact on individuals and communities in unexpected ways, for example when data sets are combined and adapted for highly invasive research (Zook et al, 2017). Biases against groups that experience poor health outcomes can also be reproduced depending on what type of data is collected and with what purpose (Faife, 2018).

The concern with how data might be deployed and who it might serve is echoed by Virginia Eubanks Associate Professor of Political Science at the University at Albany, SUNY. Her book gives examples of how data have been misused in contexts including criminal justice, welfare and child services, exacerbating inequalities and causing harm. Frank Pasquale in a critique of big data and automated judgement has identified how corporations have compiled data and created portraits using decisions that are neither neutral or technical. He and others call for transparency, accountability and the protection of citizen’s rights by ensuring algorithmic judgements are fair, nondiscriminatory, and open to criticism. However, it is difficult for people from marginalised groups to challenge or interrogate systems or seek redress if harmed for example through statistical aggregation, so fostering dissent and collaboration by public authorities is necessary. Groups with the worst health outcomes have limited access to interventions or the determinants of health to begin with. So, it’s important to ensure that policy and regulation drive structural changes rather than embedding existing discrimination that exposes minority groups to increased surveillance and marginalisation (Redden, 2018).

The advent of Australia’s A$18.5 million national facial recognition system, the National Facial Biometric Matching Capability will allow federal and state governments access to access passport, visa, citizenship, and driver licence images to rapidly match pictures of people captured on CCTV “to identify suspects or victims of terrorist or other criminal activity, and help to protect Australians from identity crime“. The Capability is made up of two parts, the first comprises a Face Verification Service (FVS) which is already operational and allows for a one-to-one image-based match of a person’s photo against a government record. The second part is expected to come online this year and is the Face Identification Service (FIS), a one-to-many, image match of an unknown person against multiple government records to help establish their identity. Critics are concerned at the false positives that similar technologies have found elsewhere like the US and their failure to prevent mass shootings.

Me checking out the biometric mirror at Uni Melb — Me checking out the biometric mirror an artificial intelligence (AI) system to detect and display people’s personality traits and physical attractiveness based solely on a photo of their face. Project led by Dr Niels Wouters from the Centre for Social Natural User Interfaces (SocialNUI) and Science Gallery Melbourne at University of Melbourne.

Context is also important when considering secondary use of data. Indigenous voices like Kukutai observe that openness is not only a cultural issue but a political one, which has the potential to reinforce discourses of deficit. Privacy also has nuance here, public sharing does not indicate acceptance of subsequent use. Group privacy is also important for those groups who are on the receiving end of discriminatory data-driven policies. Open data can be used to improve the health and well being of individuals and communities. The efficiencies and effectiveness of health services can also be improved. Open data can also be used to challenge exclusionary policies and practices, however consideration must be given to digital literacy, privacy and how conditions of inequity might be exacerbated. Importantly, ensuring that structural changes occur that increase the access for all people to the determinants of health.

References

Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press, 2018.
Faife C. The government wants your medical data. The Outline, https://theoutline.com/post/4754/the-government-wants-your-medical-data (2018, accessed 16 October 2018).
Ferryman K, Pitcan M. Fairness in Precision Medicine. Data and Society, https://datasociety.net/wp-content/uploads/2018/02/Data.Society.Fairness.In_.Precision.Medicine.Feb2018.FINAL-2.26.18.pdf (2018).
González-Bailón S. Social science in the era of big data. POI 2013; 5: 147–160.
Kostkova P, Brewer H, de Lusignan S, et al. Who Owns the Data? Open Data for Healthcare. Front Public Health 2016; 4: 7.
Kowal E, Meyers T, Raikhel E, et al. The open question: medical anthropology and open access. Issues 2015; 5: 2.
Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) project—a mechanism for data sharing. N Engl J Med 2016; 375: 403–405.
Kukutai T, Taylor J. Data sovereignty for indigenous peoples:current practice and future needs. In: Kukutai T TaylorJ , ed. Indigenous Data Sovereignty: Toward an Agenda. Acton,Australia: ANU Press; 2016: 1–22
Lubet S. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma. The Conversation, 2017, http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 (2017, accessed 22 October 2018).
Pitcan M. Technology’s Impact on Infrastructure is a Health Concern. Data & Society: Points, https://points.datasociety.net/technologys-impact-on-infrastructure-is-a-health-concern-6f1ffdf46016 (2018, accessed 16 October 2018).
Redden J. The Harm That Data Do. Scientific American, 2018, https://www.scientificamerican.com/article/the-harm-that-data-do/ (2018, accessed 22 October 2018).
Tennant M, Dyson K, Kruger E. Calling for open access to Australia’s oral health data sets. Croakey, https://croakey.org/calling-for-open-access-to-australias-oral-health-data-sets/ (2014, accessed 15 October 2018).
Verhulst S, Noveck BS, Caplan R, et al. The Open Data Era in Health and Social Care: A blueprint for the National Health Service (NHS England). http://www.thegovlab.org/static/files/publications/nhs-full-report.pdf (May 2014).
Yurkiewicz I. Paper Trails: Living and Dying With Fragmented Medical Records. Undark, https://undark.org/article/medical-records-fragmentation-health-care/ (2018, accessed 23 October 2018).
Zook M, Barocas S, Crawford K, et al. Ten simple rules for responsible big data research. PLoS Comput Biol 2017; 13: e1005399.

Panel at the Wheeler Centre March 1st 2023

March is an exciting month for me with events and exhibitions about M/others and birthing, starting with a panel at M/Other at the Wheeler Centre in Melbourne.

“Last year, more than 300,000 children were born in Australia, yet systems in place for childbirth remain opaque and often discriminatory. For M/OTHER, the Wheeler Centre brings together a panel of perinatal health experts and creatives to explore the disparity between birthing expectations and reality, the birthing body, structural healthcare barriers faced by First Nations communities, and why mental health care for new parents so often falls short. Combining their personal experience with years of research and expertise in the fields of perinatal health, this panel features author of The Cost of Labour, Natalie Kon-Yu; nurse and Vice Chancellor’s Fellow at RMIT, Dr Ruth De Souza; and Karinda Taylor, CEO at First Peoples’ Health and Wellbeing. Together with feminist writer and organiser Karen Pickering, they will navigate the intersections between pregnancy, birthing and healthcare for a multi-faceted discussion of the contemporary birthing experience.”

If you missed it, you can watch below.

The Perinatal Society of Australia and New Zealand (PSANZ) Congress follows from the 5th – 8th March at the Melbourne Convention and Exhibition Centre. PSANZ is a multidisciplinary society dedicated to improving the health and long term outcomes for parents and their babies. The theme for the Congress is ‘Laneways to Better Perinatal Outcomes’. I am excited to be presenting as part of a panel on Tackling racism in perinatal care being chaired by Nisha Khot (guest on the Birthing and Justice podcast episode Season 2, Episode 5) and Jayne Kotz. Some of my favourite people are also on the panel on Wednesday: Catherine Chamberlain (guest on the Birthing and Justice podcast episode Season 4, Episode 2) will be talking about What do Parents need to Feel Safe?; Mandy Truong will be talking about Overcoming Institutional and Organisational Racism in Health Settings: Jacynta Krakouer (guest on the Birthing and Justice podcast episode Season 4, Episode 2) will be talking about The Australian Antiracism Alliance (AAPP) An Aboriginal-led initiative, the Australian Anti-Racism in Perinatal Practice (AAPP) Alliance which is a group I am proud to be a part of. It is made up of First Nations and non-Indigenous academic and industry experts with an interest in generating knowledge and action to improve First Nations women’s experiences and outcomes within the perinatal sector in Australia. You can read a paper we co-wrote: Identifying and dismantling racism in Australian perinatal settings: Reframing the narrative from a risk lens to intentionally prioritise connectedness and strengths in providing care to First Nations families. I’ll be talking about Cultural safety and maternity/birthing care. Focussing on voice and representation, and the Birthing and Justice podcast.

Then at the end of the month, I’m convening a panel at the Centre for Contemporary Photography (CCP). This time with some of my previous podcast guests Eleanor Jackson, Natalie Kon-yu, Helen Ngo and Skye Stewart (forthcoming). It accompanies a beautiful exhibition at CCP which includes Lisa Sorgini: ‘Behind Glass’, Ying Ang: ‘The Quickening’, Odette England: ‘Dairy Character’, and Miriam Charlie: ‘Getting to Borroloola’. Hope to see some of you there!

Panel moderated by me (Ruth De Souza) with Eleanor Jackson, Natalie Kon-yu, Helen Ngo and Skye Stewart

In March I am also doing presentations for Diversity Arts Australia on Cultural Safety and the arts; A keynote on the theme Reimagining Asian Mental Health for Te Papa; a keynote at the Echuca Regional Health Research and Innovation Symposium (which has already been postponed twice because of the pandemic and floods); and finally a panel for the Screenworks’ 2023 Regional to Global Screen Forum.

So, this incredible book Nursing a Radical Imagination: Moving from Theory and History to Action and Alternate Futures, Edited by Jess Dillard-Wright, Jane Hopkins-Walsh, Brandon Brown has been published, and what a thrill to have a chapter in it!

The book is described as “Examining the historical context of healthcare whilst focusing on building a more just, equitable world, this book proposes a radical imagination for nursing and presents possibilities for speculative futures embracing queer, feminist, posthuman, and abolitionist frames”.

My chapter: Using Arts-Based Participatory Methods to Teach Cultural Safety details my efforts to introduce Cultural Safety into a Bachelor of Nursing program through collaborations with artist friends. There’s a section on engaging teaching colleagues in Possum skin bracelet making with Dr Vicki Couzens, a Gunditjmara woman from the Western Districts of Victoria who is a Senior Knowledge Custodian for possum skin cloak story and language reclamation and revival in her Keerray Woorroong Mother Tongue.

Me with Dr Vicki Couzens (taken in 2015).

Then the story of developing a unit for nursing students where a workshop was offered at the start of the semester drawing on Forum theatre developed by Augusto Boal co-facilitated with two experienced practitioners Azja Kulpińska and Dr Tania Cañas (action shot of us below).

In my chapter I set the scene of trying to teach Cultural Safety in Australia by talking about: whiteness in the “lucky country”; how Cultural Safety was introduced into nursing curricula; the University as both a colonial site and place of transformation; and how nursing degree programs experience the strictures of the neoliberal University while reproducing colonial legacy inequalities in the curriculum factory. I suggest the barriers to a culturally safe and transformative curriculum in nursing include: conservatism, multiple stakeholder demands, technomanagerialism, surveillance, precarity, conservatism, a lack of skills, and unexamined whiteness. I include a reflexive section which I call Teaching Cultural Safety while being unsafe. I conclude the chapter by describing teaching as a marginalised subject while a minoritised scholar as being like teaching into a headwind (see Anderson, et al., 2020) and drawing on Mukandi and Bond (2019) suggest that trying to “out-teach” the imposition of racialised ideas is impossible, but creating pockets where reparative and healing work can happen is something I am proud of doing.

I share my last words below:

So how do we make sure that the future of nursing is collectively “ours” when the responsibility for the work of Cultural Safety is unevenly distributed, devalued, and displaced onto those who are fighting with both armory and weapons to survive in whiteness? Those who are struggling with the work of fitting in or disappearing, who are tasked with being there without really being there? (Mukandi & Bond, 2019). High-quality academic work including teaching is slow work, time is needed to try things, to engage and innovate, to facilitate curiosity and creativity in students (Mountz et al., 2015). None of which can happen effectively in accelerated and precarious work contexts. If we want to deliberately teach students to not only be capable and competent but to fight for equity, anti-racism, and social justice, we must make time to challenge or experiment, otherwise we risk reproducing a depoliticised “what’s already there” future workforce, fixated on the useful, the commodified and utilitarian. A workforce that reproduces structural violence, joining generations who have done much the same. As Cultural Safety becomes tamed and domesticated, into University curricula, we must ensure it does not lose its critical edge. I am unconvinced that we can shift whiteness in nursing. But maybe, just maybe by making this contribution, “being part of a collection [in this book] can be to become a collective”(Ahmed, 2012, p. 13). This is my hope.

Image: We are the Front-line (2022), by Xander Savage

It has been a privilege to be a part of the team who created The Nurses’ and Midwives’ art exchange, at the RMIT Design Hub Gallery as part of the Big Anxiety Naarm/Melbourne. The exhibition highlights creative responses and stories from nurses and midwives who worked through the pandemic in Australia and the US. We wanted to surface nursing and midwifery ways of knowing beyond the dominant empirical models of positivist science, to include: the ethical, aesthetic, and personal (Carper, 1978).

We also wanted an archive of the pandemic that was from them rather than about them. These works are accompanied by responses from RMIT art students and staff. Our team wanted to develop experiential and embodied pedagogical approaches through material making for artists to respond to social justice challenges beyond and within the classroom and studio. We used an inter-professional/inter-sectoral approach to teach students for a semester and matched them with nurses working in diverse healthcare settings.

So, this exhibition is an innovative project, it is a love letter to Nurses and Midwives who have been front and center of the action, and also to those “informal” caregivers feeling the deep exhaustion of providing care during the pandemic. These professions stepped up to be there with those in need, despite the risks, lack of supplies and threats to their own health and that of their loved ones. But the pandemic also highlighted the gaps, the exclusion of Nurses and midwives’ voices at policy tables, the workforce shortages (three-quarters of nurses declared an intention to leave over the next two to five years), the horrible gaps, the lack of support, not being heard, the grind, the wear, and tear. We are grateful for support from RMIT Culture, CAST, the Australian College of Nursing, Eastern Health, Creative Care, and staff and students in the RMIT School of Art.

At the launch, we had the amazing Corona Choir perform from Eastern Health. Here are a few snaps from the night.

Mark Edgoose with a student, talking about their work. Photo credit: Emily Short

Me and some of our guests. Photo credit: Peter Mellow

The project team from left to right: Mark Edgoose, Kelly Hussey-Smith, Moi, Fleur Summers, Grace McQuilten (not pictured). Photo credit: Emily Short

Project team
Dr Kelly Hussey-Smith is an artist-researcher focused on photography as a social practice, the politics of representation, and community-oriented education. She is a Lecturer in Photography at the RMIT School of Art.

Dr Fleur Summers is the studio coordinator in sculpture at the School of Art, RMIT. She focuses on teaching developmental working processes with reference to spatial practice. Fleur has experience in a range of technical processes and has a strong conceptual approach.

Dr Mark Edgoose is the studio coordinator of Gold and Silversmithing, at the School of Art, RMIT. Mark works at the intersections of craft, design and architecture and is fuelled by an interest in both traditional and high-tech materials and processes.

Associate Professor Grace McQuilten is a writer, curator and artist with expertise in contemporary art and design, public art, social practice, social enterprise and community development.

Dr Ruth De Souza is a Fellow of the Australian College of Nursing and a Registered Nurse with a PhD, MA (Nurs), Grad Dip (Counselling) and Diploma in Nursing. Ruth has extensive experience as a clinician, researcher and academic in Aotearoa New Zealand and Australia. She is a 2020 RMIT University Vice Chancellor’s Fellow and is based in the School of Art.

When I was twelve years old I went on a work experience trip to a Radio station 1ZM in Tāmaki Makaurau/Auckland with my pal Mandy Cunningham. I had big dreams of being a DJ and radio announcer but I was disappointed that DJs were not autonomous. They had to play particular songs. That was not for me. Fast forward to 2020 when I started my podcast talking with people from First Peoples and People of Colour about birthing in settler societies. I love having autonomy to produce (with great producers like Nicola Harvey and Jon Tjhia) and distribute, as well as the intimacy and random relationships listeners develop with interviewees (check out the feedback at the bottom of the podcast episodes page).

I recorded series 1 in one day in a studio with guests ensconced in studios in Australia, Aotearoa New Zealand, and the United States. I recorded Series 2 and 3 in my home studio (code for dining table which is now my office desk) on the Bass Coast in Victoria, Australia due to lockdowns. So it’s super fun to go from communal listening to communal engagement vis a vis talking to podcast guests in person with audiences. Podcast lovers, I am hosting two panel discussions in October. I am excited about amplifying the voices of five podcast alumni in person at the Big Anxiety Festival in Melbourne next month. The first is a Panel: Caring for the caregivers: Mothers and birthing parents on October 5th, and the second is a discussion after a screening of Perinatal Dreaming on the 6th.

Podcast cover for Birthing and Justice. Artwork by Atong Atem
Design by Ethan Tsang

Caring for the caregiver, mothers and birthing parents on 5th October 2022 from 10-12
I am talking to Dr Helen Ngo, Writers Dr Natalie Kon-Yu and Eleanor Jackson at an event called Caring for the caregiver, mothers and birthing parents on 5th October 2022 from 10-12 . To register follow this Eventbrite link

Care was a big buzzword during the early part of the pandemic. For pregnant people, disruptions in care became a feature. Whether it was the inability to enjoy the physical and social support of family and friends, or that health care became virtual as services were scaled back or reconfigured. The impact for new parents was an increase in responsibility and stress and anxiety, rather than through a system of collective care. In this free event, attendees are invited to virtually listen to the podcast series Birthing and Justice hosted by me, in their own space and time.

Panel members
Eleanor Jackson was my guest on Season 2 Episode 7 and we talked about the poetics and politics of birthing. Eleanor is a Filipino Australian poet, performer, arts producer and community radio broadcaster. She is the author of Gravidity and Parity and A Leaving, both by Vagabond Press. Her live album, One Night Wonders, is produced by Going Down Swinging. Eleanor is committed to developing and hosting events and experiences that showcase the diversity of both poetic language and writers and audiences. She is a former Editor in Chief of Peril Magazine, Board Member of Queensland Poetry Festival and Vice-Chair of The Stella Prize. She is currently Chair of Peril Magazine and Producer of the Melbourne Poetry Map.

Natalie Kon-yu was my guest on Series 3 Episode 4 and we spoke about writing, birth trauma and medical sexism. Natalie is a writer, academic and editor whose work has been published nationally and internationally. She is the co-commissioning editor of #Me Too: Stories from the Australian Women’s Movement (Picador, 2019), Mothers and Others: Why Not All Women are Mothers and All Mothers are Not the Same (Pan Macmillan, 2015) and Just Between Us: Australian Writers Tell the Truth about Female Friendship (Pan Macmillan 2013). Her latest book, The Cost of Labour, is out now through Affirm Press. She lives and works in Naarm.

Helen Ngo was a guest Series 2 Episode 6 and we spoke about bilingualism, the habits of racism and embodied experiences of parenting. Helen is an academic philosopher and DECRA Research Fellow at Deakin University. She works in phenomenology, critical philosophy of race, and feminist philosophy, and has written on topics such as: racialised embodiment and temporalities, anti-racist activism, white privilege and white supremacy. Her 2017 book, The Habits of Racism, explored the different ways racism is taken up and experienced through our bodily habits and habituations. A daughter of Chinese-Vietnamese refugees and a mother to three young children, Helen’s recent work explores questions around language and bilingual parenting as part of a bigger research project on racialised non-belonging and home-making. She lives and works on the unceded land of the Wurundjeri Woiwurrung people of the Kulin Nation.

Perinatal dreaming: On justice, reclamation, and transformation 6th October at The Big Anxiety Forum
Join me in conversation with Gina Maree Bundle, Storm Henry and Marianne Wobcke to reflect on Marianne’s Roadtrip: Perinatal dreaming  workshop and talk: Reclamation, healing, and transformation in our birthing institutions.

Check out this award winning work

Gina and Storm were guests on Series 2 Episode 1 where they spoke about trust in hospitals. In the episode, we talked about working at “The Women’s” (Royal Women’s Hospital, Melbourne), which has a complex history involving the enforcement of the ‘Aborigines’ Protection Act (1869) causing First Nations babies and children to be removed from their families, community and culture. Storm and Gina work to create an intersectional, culturally safe service at multiple levels and promote a whole of hospital approach.

Artist and Program Coordinator of Badjurr-Bulok Wilam at the Royal Women’s Hospital Gina Maree Bundle

Midwife Storm Henry and nurse

Artist and midwife Marianne Wobke

Sukhmani Khorana, Bhavya Chitranshi and I recently completed research about the experiences of six cisgender South Asian-Australian women who gave birth during the COVID-19 pandemic.

A note about language in this report: The South Asian “women” in our study identified as cisgender. However, we have used a gender-additive approach to language to be respectful and inclusive of trans, genderqueer and intersex people by using gender-neutral language alongside the language of womanhood. For example, both ‘maternal’ and ‘parental’, ‘breast- feeding’ and ‘chest-feeding’, and so on (Green & Riddington, 2020).

Prior to the pandemic negatively racialised women experienced barriers to healthcare and a lack of social support, which were further exacerbated during the COVID-19 pandemic. International border closures in Australia combined with local mitigation strategies inhibited social and cultural support from families, impacting many migrant mothers who gave birth for the first time in Australia. Many hospitals in New South Wales and Victoria instituted restrictions to birthing services as a way of reducing exposure to the coronavirus during the pandemic. These restrictions varied, but included not allowing partner attendance for antenatal appointments, reducing support people to one person that could be present during the labor and birth, and sometimes not permitting partners on postnatal wards.

South Asian women were recruited via social media, and qualitative semi-structured interviews were conducted between May and October 2021 via video, following ethical approval from the RMIT University Ethics Committee. Findings from our in-depth interviews indicate that perinatal experiences were adversely impacted by:

a) limited face-to-face support from healthcare providers;
b) limited access to partner support during appointments and in childbirth;
c) isolation and mental health impacts of not having access to family networks, particularly to those who could provide culturally specific perinatal knowledge and postpartum support;
d) increased reliance on an ecosystem of online support including apps, social media groups and credible websites, which had mixed results in terms of being culturally appropriate.

Our research suggests that pre-existing limitations of healthcare providers, services and apps with regard to culturally and linguistically diverse (CALD) women in Australia have been amplified during the pandemic. Disruptions in the physical and social presence of family, friends and healthcare workers, caused by international travel restrictions and changing healthcare practices during the pandemic, add significantly to the everyday stress, anxiety and challenges faced by new parents. That responsibilization – the shifting back of responsibility from health services to mothers and their families – has led to mothers shouldering many of the burdens of a new transition by themselves, rather than in a system of collective care by wider family or partners as they might have expected.

These health system reconfigurations combined with the absence of support from family could have longitudinal adverse consequences for new parents and their children. Online Facebook groups from the mothers’ countries of origin or cultural backgrounds, or for mothers who had babies due in the same month, represented a significant source of information and support for the participants. This was particularly important at a time when women’s capacities to engage in traditional cultural practices, which provide practical, emotional and informational support, were compromised by the inability to garner familial support. In the context of a long-term pandemic, we suggest that health services: use flexible harm reduction approaches to facilitate parental support (rather than institute blanket bans), engage in active outreach, and that services are better integrated and smartphone enabled.

New-Mothers-and-Apps-during-COVID-19-1 Download

I have been a long-time fan of the New Zealand Mental Health Foundation. Starting in 1996 I did some workshops in Northland and around for the community about Depression, while I worked in perinatal mental health. Later, I co-produced a brochure about perinatal mental health for them. So, when the fabulous Kim Higginson asked me if I would feature in a new section on their website, I had to say yes! In My Kete features book reviews and stories from people in the mental health sector sharing what they have found most helpful in their own work and lives. The word/kupu “kete” symbolises the sharing of knowledge and prosperity.

Ceramic kete gifted to me with found sulphur crested cockatoo feathers

Long before social media, my family would eagerly watch the 6pm news. As new migrants to Aotearoa, we would watch with anticipation for even a tiny glimpse of the places we had left behind, that we were connected to. Goa, our turangawaewae, the home of our ancestors, or Tanzania or Kenya, where we had all been born and lived. But it was the seventies, and the closest we ever came was hearing about the famines in Ethiopia and civil war in Angola, until the Montreal Olympics of 1976. We couldn’t wait for the Kenyan and Tanzanian runners like Filbert Bayi to absolutely smash all the other athletes. We knew they were the best!

Our anticipation was thwarted by bigger events. The New Zealand All Blacks had been playing rugby in apartheid South Africa despite the United Nations’ calls for a sporting embargo. 28 African countries led by Tanzania decided to boycott the games after they had asked the International Olympic Committee (IOC) to exclude New Zealand from the Games and were refused. The United Nations secretary-general said he recognised the “deep and genuine concerns” felt by African countries but, “at the same time I wish to point out that the Olympic Games have become an occasion of special significance in mankind’s search for brotherhood and understanding.”

The story about the Olympics shows how keen I was to see anything of my world reflected to me through the collective sphere or mass media. But this was rare, and when I did see something, it was often a globalised reflection of famine, disease or deficit. So I turned to literature. I was a frequent visitor to Titirangi Library in West Auckland, where I discovered Ms Magazine and read every issue I could get my hands on. Through authors like Germaine Greer and Andre Dworkin, I read that white feminism was good and brown women were oppressed by their cultures. I struggled to reconcile this idea of brown men as bad. The men I knew in my community (who were very few in NZ in those days), were also struggling with racism, economic disadvantage and white supremacy. My Dad worked two jobs (as a teacher and then as a cleaner) so that my mother could study to become a teacher. He then came home and did the cooking, while my three sisters and I administered the household so that my mother could study, and our collective free time could be spent on family outings.

Reading This Bridge Called My Back was life changing. For the first time, I saw women of colour foregrounded. They were powerful, knowing, wise, and full-bodied; not deficient, in need of rescuing or pathological. I saw them navigating complicated worlds that were not built for them. I saw collective struggles and collective joy. These stories resonated with me so much I developed a desire for collective solidarities, which led to conference organising (for refugees and Indian social service professionals) and connecting and bringing diverse voices together (the Aotearoa Ethnic Network). I moved beyond exploring gender and incorporated other axes of difference including race, class and sexuality into my academic life. I still carry this work with me as I think about race and health as a researcher. I remain indebted to the solidarities that were brought together in this anthology, for giving me hope and pride in my differences, while also reminding me to always think about who and what is missing from the room, whose voices are not heard and how this can be remedied.

Book Details
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (1981). First edition. This bridge called my back: Writings by radical women of color. Persephone Press. ISBN 978-0930436100
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (2021). This bridge called my back: Writings by radical women of color. Fortieth Anniversary Edition. Suny Press. ISBN: 9781438488288

I wrote a piece for the Summer 2021/22 edition (Issue 36) of the Hive (the Australian College of Nursing’s quarterly publication). Cite as: De Souza, R. (2021). Lessons on exclusion from past pandemics. The Hive, 36, 16–17. You can also download a pdf of the article for your own personal use.

Lessons-on-exclusion Download

I have three pandemic stories about health inequity. The first is a painful family one. In July 1961 in Moshi, Tanzania, my aunt died of hospital-acquired smallpox caused by the variola virus five days after giving birth to her newborn son, who died a day later. She left behind her devastated family and a thirteen-month-old daughter. She had been immunised while at school, so we don’t know what happened. We know that some vaccinations in East Africa at that time were unsuccessful because the liquid vaccine had to be refrigerated otherwise it became inactive within three days. The smallpox vaccine was produced in Nairobi or England and it is possible that temperatures were not maintained during shipping or when the vaccine was transported to distribution centres or health clinics. It could also be that a more severe form of smallpox was present in Tanzania at the time.

Closer to home there were the smallpox epidemics of 1789, 1829-32 and the 1860s in Australia (McWhirter, 2009). Smallpox arrived with settlers fifteen months after the first fleet arrived in Australia. Macassans were originally blamed for its arrival, but there was no smallpox in Macassar at the time of the First Fleet. Smallpox was widely believed at the time to come from Asian countries because Asians were thought to be diseased and different. However, smallpox was endemic to Britain and to a lesser degree Europe. The three epidemics all had a major impact on Aboriginal populations but less so on European settlers.

Smallpox was managed in different ways in the various Australian colonies. Vaccinations became available during the 1829-32 epidemic, but there was no legislation with regard to smallpox in Aboriginal communities. Rather than having compulsory vaccination imposed, vaccination occurred in an ad hoc manner if an individual settler or doctor was concerned about an Aboriginal person. In Victoria, where I live, the smallpox epidemic of the 1860s had a devastating impact on Aboriginal people. In the racial hierarchy of the time, white settlers were seen as superior to Aboriginal people and people of color. Aboriginal people were thought to be already at risk of dying, both individually and as a “race”, and were not seen as a threat as a vector of disease or of being in need of a public health response.

Chinese people were also seen as inferior and unsuitable for integration into colonial society. However, they were seen as a threat to British dominance, by virtue of their industriousness and because their numbers swelled through the gold rush era and they were characterised as a source of disease. A smallpox outbreak in 1857 in Melbourne, singled out Chinese people as the source of the threat, despite it being traced to a sailor from Liverpool, led to demands for the compulsory vaccination of Chinese. An outbreak of smallpox in 1887 was attributed to Indian hawkers or to recently arrived Chinese. The Tasmanian Chinese Immigration Act 1887 required that all Chinese entering the colony be compulsorily vaccinated, and this was carried out by the Superintendent of Vaccinations, C.E. Barnard, even as compulsory vaccination was being challenged among the European population on the grounds of contravening individual liberty.

And now to the present. In Victoria, where I live, where the unfair structural arrangements in our society have been exposed. Nine public housing towers with high populations of migrants and people of refugee background in North Melbourne and Flemington were put in lockdown without notice (Ghumkhor, 2021). This racialised response was also seen in Sydney, where people in the western suburbs were policed heavily compared to the eastern parts of the city.

These pandemic examples from the past and recent present show that although we might be in the same boat “some people have yachts and superyachts” (Siouxsie Wiles). There’s the global inequities of vaccine distribution, which are as evident now in terms of Covid as in my Aunt’s time. At the time of writing this (December 2021), Canada had a total vaccination rate per 100 people of 155.67 while Tanzania had a rate of 1.63, compromising the effectiveness of vaccination as a public health strategy (Carey, 2021). We know that this massive disparity will have far reaching impacts. Low vaccination rates mean that the virus can continue to spread and increase the risk of new variants emerging globally. Considering health equity would ensure that the places that needed the vaccine the most could be supported with resources. This is true also of Australia where there was a lack of prioritisation of vaccine supply for the people with the most need (e.g. essential workers in precarious work, people living in high density housing). An equity lens would require targeting people living in ‘LGAs of Concern’ with early intervention to promote understanding of restrictions, vaccine uptake, and Covid-safe work practices (Reeders, n.d.).

The second and third examples show how race and racial hierarchies have played a part in how infectious diseases are managed in settler colonies like New Zealand and Australia. Fueled by fear, we have turned to carceral responses and policing particular areas rather than making public health responses toward equity. These responses rather than community led solutions have been traumatising and reduced trust in population groups that already are distrustful or disengaged from health services (Liddle, 2021). The lack of financial assistance for international students and essential workers spread across different contexts has also exposed how some communities are seen as less worthy of respect or care.

Bringing in an equity lens reveals the limitations of health communication during the pandemic. Firstly, health messaging has not always been accessible for people from culturally and linguistically diverse communities. Initial messaging did not take into account fluency in a language other than English or take into account low health literacy, or diverse work and social contexts that such communities live in, such as the prevalence of precarious essential labour, irregular shift work or multi-generational households. The pivot to digital technologies has also made life more difficult for marginalised communities. Whether for accessing online consultations, or the requirement to use apps to check in at venues and facilities using QR codes, to home schooling and working from home, the mandatory use of unevenly distributed technology has widened existing health inequalities. Once again, the assumption that middle-class, English speaking communities are the Australia public health needs to serve have prevented us from achieving positive outcomes for all. We need far more engagement with marginalised groups and to welcome their participation in producing healthy outcomes for their communities if we don’t wish to repeat the exclusions of the past.

Footnote
10 January 2022 from Dr Nadia Chaves, Clinical lead and Chair of C-19 Network clinical governance committee, Infectious diseases specialist

Thank you for this article, Ruth. I just wanted to mention re your latest article – the C-19 consortium (made up of a consortium of 5 community health organisations – IPC, DPV, EACH, Star health and cohealth) was contracted by Vic gov in 2021 to specifically target vaccinations for at-risk and underserved communitiues including people in social housing, people who are experiencing homelessness, asylum seekers and refugees and people from CALD communities.

We set up vaccination clinics in all the housing towers who were locked down. This has enabled a very high double vax rate in these housing estates. It was great they were able to be prioritised- the main rate limiting step was access to enough vaccine through federal government and also the lack of staff.

I do believe there are opportunities to better engage and empower people with intersections of being underserved outside social housing as well. This includes- people with mental health issues, disabilities, people with preferred language other than English, those with low health literacy and low socioeconomic backgrounds. With Omicron, boosters and children’s vaccinations, unless we better care for these communities they will continue to bear the largest burden of COVID-19 pandemic.

References

Carey, T. A. (2021, November 14). The number that matters in the COVID pandemic is a relative one: vaccine inequity. The Conversation.
Ghumkhor, S. (2021, October 4). Pandemic policing in “multicultural” Australia. Al Jazeera.
Liddle, C. (2021, September 29). Get rid of curfew to restore public confidence in health leadership. The Age.
McWhirter, R. (2009). Smallpox and vaccination in Tasmania. Papers and Proceedings: Tasmanian Historical Research Association.
Reeders, D. (n.d.). We ought’ve known – Bad Blood. Retrieved October 1, 2021, from