Category: Writing

Lessons on exclusion from past pandemics

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-exclusionDownload


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

Collaboration and care: Deborah Kelly and No Human Being is Illegal (In All Our Glory)

Wonderland interview Deborah Kelly Being Human exhibition collages
Deborah Kelly & collaborators No Human Being Is Illegal (in all our glory), 2014. Courtesy of Deborah Kelly. Portrait photographer: Sebastian Kriete. Created for the 19th Biennale of Sydney (2014).

When I was a nursing student I remember someone telling me “Nurses care, and Doctors cure”. Apparently, our job was the former, in the biomedical division of labor. I was shocked when I began my clinical experience to find that the health care system did not support care. I mean, nurses attempted to meet people’s needs, but the intensive and intimate labors of caring for the list of patients we were assigned were relentless and it always felt like clock time. Every shift I knew that the minute I walked through the door (particularly when I worked in hospitals) that I would need to completely forget about myself and be present for other people. I needed to meticulously account for my time in increments, scheduling when Person X would get their medication and Person Y would need to have their IV checked, when someone would need their surgical tubes removed, their catheter emptied. Somehow, I also had to show care, concern, respect, warmth in between a multitude of tasks. I’d have to make sure I had lunch at the right time to ensure that others could have their lunch. I often forgot to empty my bladder. This non-stop labor meant that there was little time to also nurture myself or my colleagues. I wondered how it was possible to care for others when there seemed to be no time to care at all. I had nothing to give anyone (let alone myself) after a shift, and thought about how I cared for strangers all day and had nothing left over to care for loved ones. A wise Charge Nurse (that’s you Lyndsay Johnston) moved me to an afternoon shift in my seventh month as a new graduate because she could tell I might burn out. Later after I had worked in community mental health and moved to the perinatal care setting, I was struck by the factory-like induction process into parenthood. The absence of joy and warmth, the tick box processing of parents- to- be through procedures that foregrounded the hospital’s interests of health and safety, but not the transition to parenthood. That’s not to say individual midwives and obstetricians were not kind, but there was something about the way the system was designed that precluded really acknowledging personhood, community and relationality.

I have moved away from clinical practice these days to research and teaching, but I know the advent of electronic health records has reconfigured how work gets done. Some have argued that technology and platforms dictate how care is provided, rather than the recipient of care or their family. While others claim that our technocratic business models are contributing to the loss of hope, and what some call “callous indifference”(Francis, 2013). So, although we come to work in health because we care, something happens to us. We who work in healthcare, we who come to health to make a difference. We, who come with tender hearts as Mimi Niles points out, sometimes end up contributing to a crisis of care in healthcare. This happens to our tender-hearted young quickly, the longer nursing students are in the practice world, the more their capacity to empathise declines. There is evidence of endemic horizontal violence and attrition from the workforce. Putting in place patient-centered care and cultural safety are suggested as ways in which empathy and compassion in health care can be embedded particularly for people for whom these services were never imagined.

How is it possible that harm is done to people while in the ‘care’ of institutions? Serious failings in hospitals and the absence of care (including those at Mid-Staffordshire NHS Foundation Trust Hospital in England) have led to calls for the urgent transformation of health services. Two inquiries (2013 Francis Report) found that basic elements of care were missed, patients were left in soiled beds, had water placed out of reach and received inadequate support for feeding and other activities. Most recently we’ve had Royal Commissions into aged care, disability, and mental health. Could it be that the failure to care is not exceptional, but instead that poor quality is embedded in the structures and processes of the healthcare system? (Goodwin et al., 2018). Not only hospital-acquired infections or surgical errors or medication errors, but also neglect and missed (where an aspect of required patient care is omitted or delayed) care? (Kalisch, Landstrom, & Hinshaw, 2009). How do we strike a careful balance between thinking about the failure to care as a systems-level issue, while also thinking about health professionals as individuals who are a part of systems? (Tierney et al. 2019). We are a profession that cares and we take caring very seriously, but how can we care when caring itself is marginalised? How can we care for those who are marginalised when we ourselves might feel marginalised and unresourced, when we feel overwhelmed? I think unless we seriously think about these questions, we are at risk of reproducing exclusionary practices and unsafe care.

This leads me to the purpose of this blog. Thinking about an experience of caring and being cared for. My portrait is being exhibited at the Being Human exhibition at Wellcome Collection in London, as a part of the No Human Being is Illegal (In All Our Glory) artwork. It’s one of two life-sized nude photographic portraits going on display for a year from a participatory collage work (see the write-up by Tania Leimbach in the Conversation) made for the controversial 19th Biennale of Sydney (2014) ‘You Imagine What You Desire’. 28 Australian and international artists led by Matt Kiem (in response to a call by refugee and ex-detainee organisation RISE) wrote an open letter to the Board asking them to abandon major funder of 41 years, Transfield, who were complicit in Australia’s brutal asylum deterrence and indefinite detention regime. The Board were also invited to engage in further discussion about other sources of ethical funding. There is of course much more to say about the ‘boycott’ which you can read on the xBorder blog and xBorder Working Paper by Angela Mitropoulos, Guardian article by Alana Lentin and Javed de Costa or this piece from Danny Butt and Rachel O’Reilly about art and detention abolition.

I learned a lot from the amazing collective process for the No Human Being is Illegal (In All Our Glory) artwork. I was one of 20 subjects chosen out of 279 people who volunteered themselves as subjects. 50-70 collage participants took part in the intensive collage workshops (thrice-weekly workshops for nine months) to make the portraits. Participants chose materials from Deborah’s extensive library of resources, including books, encyclopedias, reference materials, magazines to make a collage portrait that reflected the subjects’ interests. I was able to share my writing and theoretical and political commitments and actually visit the workshop setting in Sydney to talk to the participants. This project embodied care from conception. Collective decisions were made and I was asked for consent every step of the way, with every iteration of the process, with every travelling exhibit.

Having traveled around New South Wales, Queensland and VIC, it has now made its way to London and is a part of the Wellcome Collection. Wellcome is a global charitable foundation with a free museum and library that encourages “new ways of thinking about health by connecting science, medicine, life and art”. Deborah Kelly the artist who was commissioned for the work is based in Sydney. Her works have been shown around Australia, and in the Singapore, Sydney, TarraWarra, and Venice Biennales. You can read more of her extensive biography here. You can also support her latest work by purchasing a set of holy cards The glorious Liturgy of the Saprophyte by SJNorman.

Submission photo for No Human Being is Illegal (In All Our Glory)

Here’s Deborah’s recollection of the process of making the work (you can also listen to Deborah’s beautiful voice by clicking on this link:

I do want to say, I feel like that the care with which the work was made, the work is constituted by that care. It’s not an add on. That’s what the work is. Your portrait is extremely complex. You came and talked to us and people all took notes. You actually came to the studio, right? Where we were working…and everybody took notes, but everybody’s notes were different. And so we really, really struggled over how to reconcile them. And then we realized we didn’t have to reconcile them. In fact more is more so we can, we could just do everything. Yes, so that’s why it ended up being so abundant, because we were trying to represent as much as we could of what you told us, which is pretty exciting. So the bubbles around you represent both ocean effervescence and champagne.

And inside the bubbles, images that represent various of the things you told us. So inside one of the bubbles is a very cute image of a man and a woman in a typically romantic situation. And that was to honor your relationship with Danny. Yeah, and there’s stuff that represents your life as a nurse, your life, as a nurse in maternal health, your early life in Africa. I think we even represent the car accident somewhere in a quite lateral way. Your relationship with the Catholic church. So the bubbles are all full of all different aspects of things that you told us, but the actual portrait of you, was our interpretation of your own effervescence, body pride, sexiness, love of adornment and color.

Bubbles

So that’s what we were doing, we weren’t hiding you. We were celebrating you. So some people like my Dad, for instance, we were hiding him, and making him modest, a few people needed to be modest. But we wanted to make yours a portrait of glorious shamelessness. And remember you left your leg hair unshaven for us . And we really, really loved that. That’s why there’s nothing covering your legs.

Twinkle toes and all the leaves

You’ll remember we gave you twinkle toes and all of those shells come from Arthur Henry Mee (1875-1943). A very beautiful children’s encyclopedia from the 1930s. They’re printed on this very old fashioned clay coated paper, which is incredibly durable, which is why they’re a hundred years old, but they are still very beautiful in color.

Then we gave you that cloak of leaves, to represent you in the natural world. As a kind of queen, and we gave you that pubic tiara, and that was a nod to queenlinness, and adornment for shamelessness. Although we realized once we’d cut out those thousands of leaves, what a giant task we had set ourselves. On the day we finished, people stood on chairs, cheering themselves.

Beetle

We also gave you some jewelry made out of gold and silver beetles, these were cut out with extraordinary finesse by XXX who hadn’t done collage before, but turned out to be a person of unbelievably fine motor skills. And he was very, very proud of working on that portrait
I really remember all the people in the workshop, who couldn’t bear to be photographed in the nude, saying, oh, I wish this was me. Everybody was like, oh my God. It’s like, we’re just giving this person a big long cuddle!

Hannah Tyler talks about ‘No Human Being Is Illegal (In All Our Glory)’ in the Being Human exhibition at Wellcome Collection.

I’m finishing off this blogpost, reflecting on the challenging year 2021 has been for most people, with uncertain times still ahead, putting the concern with care front and centre. To me, care has an element of attunement or engagement, of generosity. Nurse ethicist Joan Tronto (1993) defines care as: “a species activity that includes everything we do to maintain, continue and repair our ‘world’ so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web’ (p. 103). Tronto sees care as a practice that requires attentiveness, responsibility, competence and responsiveness. It involves caring about, caring for, caregiving and care receiving. The inclusion of the latter recognises that at some point we might also be vulnerable and require care. it’s been a lifetime inquiry for me, the question of how can we be invigorated or returned to caring? In my dreams I wish everyone that we cared for, felt secure, cared for and loved. Yet, this isn’t an individual task, it is collective. Feminist academic Alison Mountz and colleagues (2015, p.1239) frame care as warfare in the tradition of Audre Lorde and Sara Ahmed. That is: “cultivating space to care for ourselves, our colleagues, and our students is, in fact, a political activity when we are situated in institutions that devalue and militate against such relations and practices”. In academia, as our summer break approaches here in the Antipodes, I am inspired by the words of Ali Black and Rachael Dwyer (2021, p.9) who talk of their collective work and write “We are fuelling our creative and collective capacities in ways that are expansive, collaborative, pleasurable, and collectively advantageous”. I wish at this seasonal time of contemplation and rest, that this invitation to collectively flourish activates all those who care about, care for, give care and receive care. Rather like I was fed during the making of an exquisite collage work by Deborah Kelly and participants.

Translating research creatively: Older adults from Culturally and Linguistically Diverse (CALD) communities, social inclusion, and technology

Artwork by Safdar Ahmed

A common critique made by Indigenous and racialized communities is that academic research is extractive. Researchers come to communities or individuals, take the information that they want and folks never hear from them ever again. They don’t get to decide on the questions, how the research will take place, and with whom. The benefits appear to be overly in favor of the researcher and their career than the community. Yet, I also know what it’s like to be an academic. Short time frames, funding cycles and crushing workloads workloads can make it hard for the researcher to do more collaborative work because the system does not always make it easy to do so.

Despite its imperfections and limitations, I’m really interested in how knowledge developed from academic research, can be disseminated to end-users and other non-academic audiences that could benefit. I want my work to have an impact, and speak beyond ‘stakeholders’ and my own intellectual communities. To that end, I’ve typically done inter-disciplinary research in partnership with community organizations. I have written elsewhere about the importance of going beyond “community as participants” to also being involved in developing research questions and methods, being supported to develop research capacity and capability, as well as developing meaningful outputs. In terms of the latter, I try and communicate research findings “back” to participants and their communities in ways that are meaningful and accessible, so as not to further compound inequity. Traditional academic dissemination pathways like reports and peer-reviewed journal articles meet the requirements for rigor by academic communities and stakeholders but can be inaccessible due to paywalls and complex writing. My efforts to disseminate this knowledge have varied from presentations to developing alternatives to peer-reviewed publications. For example in a project with Refugee background women who were sole heads of the household, we produced both a report and a pamphlet. The hope was that the report could be used by policymakers, practitioners, and community members as a way of demonstrating accountability for using money to do research and that the pamphlet could summarise the findings in a less text-heavy way and make it accessible for advocacy and application. On a related note, the project took place after a year of consultation with Refugee communities in New Zealand and reflected our team’s interest in engaged scholarship and collaborative inquiry where we valued diverse perspectives especially lived experience.

Presenting findings in an accessible and appealing way, particularly in ways that are not premised on high levels of health literacy and language proficiency was important for the Alone Together project. I chose to use graphic narratives with a visual emphasis, and as little text as possible. Comics can help pose multilayered questions, challenge stereotypes, humanise participants and provide a call to action for members of the broader public to be allies for this group. I was motivated to find a widely distributed medium where participants could see themselves and where the comic could used to facilitate change and improvement and engage a broader audience, including education, practice, policy and community. Ultimately, I was hoping that the comic could be a vehicle to facilitate empathic engagement, reflection and dialogue by readers from within and outside their communities.

Artwork by Safdar Ahmed

Feedback
A very moving and heartfelt piece.
Oh Ruth. This is such a powerful and beautiful piece.
There are so many voices that are yet to be heard in this COVI9 journey, and I am so grateful that you are able to share them, and in such a respectful way. Thank you for the work you do, and it is incredible to see this translated like this.
Such an outstanding project; including the role of creative practice front and centre. There is much we can learn from this example.
It’s a great example of how creative forms of research translation can engage publics in alternative and powerful ways.
This piece is beautiful, visually and textually. Such a great way to convey profound truths.
Dear Ruth, we met years ago and I will always remember your vivacious energy and sharp mind. Just wanted to let you know that I shared your recent article about older immigrant experience of COVID with the Cert III and IV aged care students at Victoria University. Great feedback. You’re a star. Thanks for your continuing communication of these important issues.

Should academics podcast?

Photo by Atong Atem, design by Ethan Tsang

To be a great nurse, I believe you have to be a great communicator. I am biased. I have taught communication to undergraduate nursing and osteopathy students, and I am a mental health nurse by background. I am interested in all forms of communication in health whether written or spoken. Nursing has afforded me the enormous privilege of witnessing people at their most vulnerable, joyful and fearful. I have been there during life transitions, I have seen the world widely and deeply through the bodies, hearts and eyes of the people, families and communities of the people I have cared for. I know that we as a profession wield incredible power and have the potential to cause harm, to gatekeep, to become task-focused at the expense of being in relationship. I am grateful to the nurses who have guided and led me, who have empowered me and shown me how to empathize and care for others with skill, evidence, and compassion. I am also grateful to the nurses who’ve extended my knowledge beyond the bedside, to the thinking about practice.

It’s funny thinking about the career choices you make and then how these shape your career trajectory. I enrolled in a Graduate Diploma in Counselling while working on a postnatal ward in 1994, after working in mental health for much of my career. I have written about this elsewhere and how the experiences of the poor care of migrant mothers in Auckland led me to research their experiences and think about them for more than twenty years. Realising that working in the confines of the factory model of birth was not my thing, I was excited to work with others to develop a new community focused maternal mental health service. It’s there I became interested in education as my work increasingly began to involve providing education to community organizations and health professionals about mental health issues in the perinatal period. For a list of these (only since 2000) check out my speaking page. Later, I was contracted to develop a brochure on PND for the NZ Mental Health Foundation and worked closely with consumer groups to do so. It’s been superseded but I still love it.

I did a Masters degree and researched the experiences of Goan mothers in Aotearoa, then undertook a Families Commission project with the Plunket society to look at the experiences of migrant mothers in general. I also spent some time thinking about reflexivity and positionality and what it meant to be an insider/outsider or outsider- within as Patricia Hill-Collins calls it, and the moral aspects of mothering. I later did a secondary analysis of the Korean (discursive) Families Commission data for my Ph.D. along with interviewing Plunket Nurses. I also published the findings about Indian mothers in a book by Sekhar Bandyopadhyay and blogged about the experience of White migrant mothers. Later I talked to Chinese and Indian men about their experiences of becoming fathers in New Zealand. I also talked to Refugee background women about their experiences of parenting and more recently have been researching the intersections of pregnancy, birth, migration, and digital technologies. More recently I have had the honor of speaking with Lia Pa’apa’a and Merindi Schrieber about their project Ngamumu (For Mothers), a community focused creative arts and cultural development project that seeks to decolonise maternal health by supporting mothers during the first 1000 days of motherhood. You can listen to the talk that was hosted by Contemporary Art and Social Transformation (CAST), RMIT University. CAST OUT LOUD: Ngamumu: Decolonising maternal health through creative art and ancestral practices.

The time on the postnatal ward and later in the maternal mental health service shaped how I think about cultural safety in healthcare. From being a clinician, to an educator and then a researcher, I’ve been committed to sharing this work widely, mainly through talking and writing. Increasingly though I feel like written communication has its limits particularly for those Todd Landman describes as the ones “I would most like to engage and influence”. I learned early when I started teaching mental health support workers in NZ and then later when I worked in the Centre for Culture Ethnicity and Health, how important it is to make research accessible to people. I remember my Ph.D. supervisor David Allen from the University of Washington in Seattle asking me how I could make my Ph.D. accessible to nurses and midwives who were in a position to change practice.

University academics are expected to engage with “industry”, and while I am comfortable doing this via social media, as both a blogger and tweep, a podcast feels next level. I like the idea of extending research to beyond practice contexts to public contexts, so knowledge is democratised. It bugs me that the public who pay for us to conduct research cannot access it because it needs a subscription or is behind a paywall as the amazing Siouxsie Wiles points out. I did this years ago by creating an online Aotearoa Ethnic Network Journal to bring great thinkers, writers, artists together in conversation. I also think we need to find other ways than writing to reach people. Since I got a Fellowship at RMIT and I have been based in the School of Art, I’ve been interested in how I might ‘play’ with different ways of communicating. A few months ago I collaborated with amazing artist Safdar Ahmed to create a short graphic comic for the Guardian.

So, now a podcast! Robert Danisch says it is important to trust that my “training, expertise and experience” provide me with some useful skills and knowledge that people might benefit from. As I launch this podcast, I wonder if anyone will listen and whether I can build an audience. As an avid podcast subscriber and listener myself, I love that I can listen to brilliant people all over the world while I am gardening! For the last few months, I’ve been working on a podcast to talk about birth in a settler colony and what it means for People who are BIPOC (Black, Indigenous, People of Color). I’m not sure yet what the affordances might be of using podcasts to communicate research, but I am interested in how my work might reach a bigger audience. When I started developing the podcast, I was worried that it might be considered academically underweight (whereas folks like Mark Carrigan suggest that podcasts are a “natural form of communication for academic ideas”). Now I am (almost) convinced that a podcast can be a way to make research comprehensible so as to engage a broader public in one’s work as well as a way to build an academic network, kinda like a fireside chat, people can speak in their own voices and speak more freely or informally than conventional academic forms of dissemination.

Dr. Katie Linders at the Oregon State University in conversation with Janet Salmons talks about podcasts as a way of helping to increase research literacy because “bite-sized pieces” are a nice way to synthesize research for people from a range of backgrounds. This means that researchers have to think about how they might communicate their findings to different audiences. Cochrane is a network of researchers who provide high-quality information/evidence for healthcare knowledge and decision making geared to health professionals, patients, carers, researchers or funders who have also begun making podcasts as a dissemination tool for health research. Their format is a short summary of a recent Cochrane review from the authors themselves presented in under five minutes. They are recorded in more than 30 languages and include topics such as Does stopping smoking improve mental health?; What are the benefits and risks of psychological therapies for adults with persistent and distressing pain that is neither cancer-related nor a headache? Cochrane Australia has a podcast The Recommended Dose designed to promote an informed and critical approach to healthcare where a journalist interviews researchers, thinkers, writers and health professionals. The London School of Economics Public Policy Group use audio for academic dissemination with their aim to “bring academia online, and broaden access to the social sciences…to stretch the understanding and impact of research beyond the confines of universities.”

So, this week after much agonising I launched Birthing and justice which you can find on your favorite podcast app. I am aware that the language of human reproduction is changing and that not all pregnant people are women, or mothers so hope to reflect more of these changes in how to use language and think about birthing. Please tell all your friends and those who might be interested in making services for pregnant and birthing people more culturally safe.

What people are saying about the podcast:

“Do yourself a favour and tune into the awesome podcast, Birthing and Justice, by Ruth DeSouza. Highly recommended for anyone interested in all matters birthing and racial & decolonial justice. I’ve been listening today to what are the some of most intelligent, insightful, warm, and fierce conversations I’ve heard in this space. More of this stuff please.” Helen Ngo, Melbourne

“Ruth! loving this podcast so much, your warm voice full of wisdom and embrace is such a salve!  “Naomi’s episode sooo strong, Te Reo shone through as a wonderful layer … it makes me teary listening to that language slipping seamlessly into everyday vernacular” Beth Sometimes, Alice Springs

“Amazing podcast talk Dr Ruth! it was very powerful when Dr Naomi compared the land and women’s bodies. I have some friends who are going to love this!” Jayne Wood, London

“This is a beautiful, thoughtful podcast with extremely high production values on an incredibly important topic. Conversations about birth in Australia are either non existent or really limited so it is wonderful to have this resource which brings us the voices of some of the leading practitioners in changing birth care. Ruth is a warm and passionate interviewer and brings the best out of her amazing guests. Episodes are tight and impactful. As both someone who has birthed two babies at home and a critical race researcher I love this podcast and will be recommending it to everyone I know” Anastasia Kanjere, Melbourne

“I loved this – have listened to all 3! Please keep this important conversation going 🙏 thank you for your amazing mahi. I also love how the topics could be enormous but you manage to cover lots and lots in just half an hour… so a super digestible entry point to suggest as first step into education as well as balm and validation and further insight & directions to explore further to those already on this learning journey… very cool!” Vic Parsons, Maternal health coordinator, Capital Coast DHB, Wellington

Dear Dr Ruth, I just wanted to get in touch to let you know I recently came across your Birthing and Justice podcast and really enjoyed it. I am currently convening an Indigenous Health unit and am very pleased to be able to use your episodes with Karel Williams and Dr Naomi Simmonds when we cover maternity. 250 plus students should shortly be tuning in! Ella Kurz, School of Nursing, Midwifery & Public Health, University of Canberra

This is a really important podcast on birth, racism and decolonisation. Each episode is powerful, informative, intelligent and warm. Each speaker contributes a dynamic combination of knowledge, experience and resolute commitment. Together the 3 episodes make a robust and hard-hitting combination. Thank you Ruth De Souza, Dr. Naomi Simmonds, Karel Williams, Dr Mimi Niles, and all who have contributed to this really important mahi. Anna Fielder, New Zealand

This is a brilliant podcast Ruth – warm, engaging and decolonising, I love it! I’m not a health care worker, but you really struck a chord given my own experience. I’m passionate about midwifery care, especially midwifery group practice and home birthing where/if possible, and reclaiming control of our bodies from that default position of medical intervention. I hope this becomes an essential resource for students, practitioners and educators – congratulations. Dr Natalie Harkin
Senior Research Fellow, Flinders University.

If you still think birth is not political. It really frustrates me that when women talk about the significance of birthing there are still some feminists who think it is no more than some kind of middle-class competitiveness/internalised misogyny about vaginal birth versus caesarean or hippy indulgences. This is an amazing podcast series by Dr Ruth De Souza, who I have been friends with for a long time after we met through maternal feminism circles, and it is about birthing and justice. I think you’ll love it. Imagine being moved away from all your friends and family right when you are getting ready to have your first baby. What kind of birthing system thinks that is ok? Imagine going into hospital to have a baby when you and your husband’s mothers experienced babies being removed from them in hospitals. What kind of terror might a hospital birth hold for you? Imagine being an Aboriginal woman who wants to bring soil or plants from home in with her when she births in a hospital miles from her community. Does hospital policy cater for that? Will she be ridiculed or respected for the request?
What is the cost of failing to be truly woman-centred in birth? And what if your woman-centred birthing centre doesn’t include brown and black women?
Birth is political. Andie Fox, Queensland

Have started watching the podcasts – amazing guests so enthralling – an amazing resource you have created Ruth! Dr Nimisha Waller, Postgraduate Programme Leader, Midwifery, Senior Lecturer, Auckland University of Technology

This is such a great podcast! Dr Ruth is a warm and engaging host and her guests are smart, insightful and grounded. And they’re so interesting! You always learn something new. The production quality is awesome. I especially like how this podcast opens up a reflective space to consider how pregnancy and birth care is experienced by people of colour and first nations people. So worth a listen. Liz Stokes, Sydney.

I was so appreciative to hear the words of intelligent women talking on this vitally important and overlooked topic, and to have their words centred, with you gently focussing and facilitating. It felt like a privilege to be allowed into these stories and honouring to give them space to be heard. Shiranthi Fonseka, New Zealand

Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities

So thrilled and delighted to have our paper in this special issue of Conjunctions. Transdisciplinary Journal of Cultural Participation on Health, Media and Participation examining how media participation and health participation connect. Beautifully edited by Maja Klausen, Anette Grønning and Carsten Stage.

How beautiful is the cover page!

De Souza, R., Butt, D., Jethani, S., & Marmo, C. (2021). Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities. Conjunctions. Transdisciplinary Journal of Cultural Participation, 8(1).https://doi.org/10.7146/tjcp.v8i1.117800

Being an ally, not just on International Day of People with Disability…but, every day.

December 3rd is a United Nations day that promotes inclusion and “celebrates” people with disability.

I was asked to MC a function today at work to mark it. I need to state at the outset that I am a nurse by background, so l want to acknowledge that health systems have not always been places where people have received the kinds of support that they have wanted. The second thing I want to acknowledge is that I am going to use both people first and identity first language in this blog to acknowledge the different kinds of language that are used by people with lived experience and those with institutional backgrounds.

We began with some accessibility details and then an Acknowledgement of country by RMIT Honours Student Chrissy Beling who pointed out that First Nation’s People are more likely to experience disability and are less likely to have access to adequate support or culturally safe and appropriate healthcare. I then made some introductory comments:

“The bushfires and COVID19 have led to a rallying cry of “we are in this together”. However, the pandemic has revealed the limitations of what it means to be facing something ‘together’ for those who live at the intersection of multiple marginalized identities. As the New Zealand disability rights commissioner Paula Tesoriero pointed out, lockdown gave many non-disabled people a small inkling of the experiences of isolation and restriction that disabled people face on the daily. However, people with disabilities also experienced additional barriers, emergency measures disrupted vital support networks; exacerbated gaps in services and policy approaches for disabled people; not getting personal protective equipment (PPE), problems accessing supermarkets, delays in being provided with official public health information in accessible formats. People with neuro-disabilities and learning disabilities faced judgement for not knowing the new social “norms” of queues, masks and physical distancing. Even digital remedies were inadequate creating challenges for those disabled people who could not access online information. Some disabled children had to learn at home, without tactile and hard copy resources. Sometimes respite care was not available. On the other hand, the pandemic opened up other ways of working, we relied on technology to get our work done and many of us worked from home. These flexible employment arrangements highlighted the previous ableism of “not yet”.

So then how do we ensure access is not a noun but a verb? How do we view access as a collective responsibility? In a time of world crisis, of climate change and COVID, when we recognise that our old ways of working are not working and we need to radically change how we live. I’m inspired by Sins Invalid who ask us how we can create radically resilient, sustainable communities where no one is left behind? How in a time of zoom (or Teams) do we notice and attend to each other. How can we “breathe a deeper layer of care” into our relationships and collective experiences” as we move forward in love for each other? By gathering together to celebrate this day, I am hoping that we can help to ensure accessibility for the estimated one in six RMIT staff members and 4.3 million Australians living with disability.”

Chief Operating Officer and Executive Champion for Accessibility, Dionne Higgins followed, talking about RMIT achievements including: being the Top Organisation for accessibility and inclusion with the Australian Network on Disability; first University to achieve the Disability Confident Recruiter accreditation; Equitable Learning Services provided individual consultations to 3000 students (up from 1740 in 2019) and delivered over 2600 learning plans for students to access adjustments; the Student Counselling Service provided nearly 8,000 counselling consultations; 3,500 students and staff engaged with communications and activities to support mental wellbeing.

Then it was time to hear the fabulous keynote speaker Carly Findlay, an award-winning writer, speaker and appearance activist. Australian Financial Review and Westpac 100 Women of Influence Awards named Carly one of Australia’s most influential women in 2014.  Carly received a Medal of the Order of Australia (OAM) for her work as a disability advocate and activist. Carly’s speech was about some of the key ways to be an ally. My take-home messages were:

  1. Take care with language. Discourses of deficit, inspiration and pathology aren’t helpful. Don’t use euphemisms.
  2. Don’t be “disability blind” – “see us and see the barriers we face”.
  3. Step up without over-stepping- don’t speak for someone disabled.
  4. Stop centering only the experience of white people with disability.
  5. Educate yourself: Follow the fabulous disability activists on social media, sign up for google alerts.
  6. Write complaint letters.
  7. Use social media to lobby.
  8. Call out ableist language and don’t play devil’s advocate.
  9. Make events accessible.
  10. Make communications accessible-use image descriptions.
  11. Ensure there is disability representation on panels.
  12. Pay people for their time.
  13. Sit with discomfort if you have non-disabled privilege.

I closed with the words of Aurora Levins Morales, Patricia Berne and Leroy Moore who say ‘All bodies are unique and essential. All bodies are whole. All bodies have strengths and needs that must be met. We are powerful, not despite the complexities of our bodies, but because of them. We move together with no body left behind. This is Disability Justice.’

What do artists bring to research?

ENQUIRING MINDS: WHAT ARTISTS CAN BRING TO GOVERNMENT AND INDUSTRY RESEARCH

 It’s conference season as we speed toward the end of the year. The Australian Academy of the Humanities hosted their 51st Symposium At the Crossroad? Australia’s Cultural Future. The aim was to facilitate conversations about the transformations needed to secure Australia’s cultural and creative future. It brought researchers, practitioners, creators and policy makers together to consider how innovative cultural policy settings and creative practice could together underpin a path to recovery, for people and communities.

Photo of my screen as we began our webinar

It was such a buzz to be on a panel as part of a satellite session, hosted by The Australia Council for the Arts, exploring the intersections between creative practice, research, industry and government. With me were Pat Grant (UTS): writer, illustrator and author of two graphic novels; Gabriel Clark (UTS): designer, photographer and producer of multimedia storytelling events and Alon Ilsar: drummer, composer, instrument designer and researcher. Our brief was to reflect on the skills artists bring to a research project and to consider the ways in which artists’ predisposition to enquiry, creative thinking, and their ability to communicate ideas could be more intimately involved in research. The panel was beautifully organised and facilitated by Christen Cornell.

Christen asked us to consider questions including: What might be the outcomes of allowing artists to creatively analyse data? How might artists’ creative communication of findings open onto new audiences, such as those who are unlikely or unable to read traditional research reports?

These questions have relevance for access and inclusion, with alternative research outputs for example audio-based (see Alon’s work), or visual representation (Pat and Gabe’s work). They also raise further questions about opportunities for artists interested in working in cross-sectoral industry settings.

Conversations on Tangata Whenua and Asian solidarity

I moved to Australia seven years ago from Aotearoa New Zealand. I’m pleased that old friends remember me despite the Tasman sea (Te Tai-o-Rēhua) between us (a so called “marginal sea” of the Pacific Ocean (Te Moana-nui-a-Kiwa). I was chuffed to accept the invitation from Asians Supporting Tino Rangatiratanga to be on a panel: Conversations on Tangata Whenua and Asian solidarity with Tze Ming Mok, Aaryn Hulme-Niuapu, Sue Gee, Arama Rata, me and Sina Brown-Davis.

This session will be an exploration of the experiences of tangata whenua and Asian activists who are working toward decolonisation and how we can strengthen cross-cultural solidarity against colonialism and racism. We will reflect on learnings of the past and imagine ways that we can move forward together to a just future.

As part of a phenomenal four day program in the fifth Social Movements, Resistance, and Social Change Conference: Activating Collectivity: Aroha and Power hosted online and in Te Whanganui-a-Tara (Wellington).

It engages with the ongoing question of how we honour Indigenous knowledges, learn from the spirit and tikanga animating struggles, and work in genuine togetherness for the deep structural change that our planet and people urgently need. This year’s theme also provides space for responding to social issues and movements as they continue to unfold around us. In response to the Black Lives Matter movement, for instance, ‘Activating Collectivity: Aroha and Power’ also engages with questions of how we situate ourselves as allies and accomplices, confront racism within and between our communities, and expand our networks and solidarities. Our theme asks how our imaginings of collectivity, aroha, and power have been activated and constrained, and how we can extend them as a basis for liberation.

Photo taken at march on Queen St, Auckland, 2012.

One of the questions we engaged in as a panel was about our entry point into this kaupapa of Tangata Whenua and Asian solidarity. This took me down memory lane. It began with helping fund raise for the Hoani Waititi Marae in the late seventies when my family moved to West Auckland from Nairobi, Kenya.

Photo of the Maori cookbook I sold to help fundraise for an urban marae.

Most of my experiences with tangata whenua were through Pākehā institutions. In the eighties when I was doing my nursing education at AUT, I joined a trip to the Ureweras and enjoyed regular noho marae at Hato Petera school for boys, across the road from the Akoranga campus. However, most of my experiences didn’t really help me make sense of my place in the colonial sandwich (Avtar Brah). It’s only when I started reading Xicana feminism like This Bridge called my back, Black feminists like Audre Lorde and bell hooks, that I started developing a vocabulary for my own experiences. Thank goodness for theory. In 2004 I set up the Aotearoa Ethnic Network email list and then a journal with the brilliant artistic and design talents of Andy Williamson as a way of problematising the unique to New Zealand term to describe people who are neither Maori, Pākehā or Tangata Pasifika. As Tze Ming quipped in the webinar “before we had a group for ethnics”. From this network, we also developed a journal and you can see some of the covers from the issues below. I’m going to revamp my website soon so will share the archive and contents in full.

Back in the day (2012) Philipa K Smith used a case study from AEN in her PhD and a subsequent publication: New Zealanders on the Net: Discourses of National Identities in Cyberspace. Smith used a discourse-historical approach of critical discourse analysis, emphasising the role of power and ideology in the construction of identities.

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I also helped develop the Tangata Tiriti interactive workbook in 2006 which has accurate information about the Treaty of Waitangi in plain English for migrants. I’ve also written an essay for Tangatawhenua.com for the Are we there yet? series, a prelude to the election in November 2011, with a focus on the ‘wish list’ of Generation Xers; their hopes, dreams, aspirations and vision for New Zealand society. I wrote:

I began this piece by talking about my family’s welcome to New Zealand through consumer capitalism at Foodtown. On reflection, the supermarket is an apt metaphor for migration, both for the visibility and promise of its products and for the invisibility of its processes. Neoliberal narratives of individualism and ‘choice’ render invisible both the dispossession of the local and Indigenous and the economic imbalance necessary for the movement of goods and people to the West in order for capitalism to flourish. Yet if these two aspects of migration were made visible, in the same way that more ethical consumptive practices are becoming a feature of contemporary life then other kinds of relationships might be made possible. In the case of ethnic communities, direct negotiation with Maori for a space where Indigenous Maori claims for tino rangatiratanga, sovereignty and authority are supported while the mana of newcomers to Aotearoa is upheld hold promise.

Thanks friends Menghzu Fu and Kirsty the chance to do some walking down memory lane and also to consider what kind of future I might be able to contribute to both in Aotearoa where my family still live and here on the unceded lands of the people of the Kulin Nation.

Women of Colour ‘in’ academia: Political creativity and (im)possibilities of solidarity

This week has been a biggie with lots of zoom presentations, all of which were marvellous. The fabulous and thoughtful Lutfiye Ali gathered Shakira Hussein, Denise Chapman, Torika Bolatagici, Jesica S. Fernández and I together to talk solidarities in academia.

Abstract:

Expressions of embodied political creativity and radical being of and for solidarities of resistance have been long described by African American, Global South, decolonial, Indigenous and other women of colour scholar activists (e.g., Hill Collins, 2002; hooks, 2000; Grande, 2000; Lorde, 1984; Lugones, 1987; Moraga, 1983; Smith, 1999; Wynter, 2003;). Gloria Anzaldua (1990) writes:

A woman-of-color who writes poetry or paints or dances or makes movies knows there is no escape from race or gender when she is writing or painting. She can’t take of her color and sex and leave them at the door of her study or studio. Nor can she leave behind her history. Art is about identity, among other things, and her creativity is political.

As Women of Colour, this way of thinking about identity and knowledge inspires us to ask how we see our own positions in the academy. How do (neo)liberal institutions receive the voices and knowledges of racialized women? How do we co-create safe and enabling spaces for embodied knowledge production that is inherently political? What are ways in which we resist, disrupt, and transform intersecting vectors of inequality? Through these conversations, we will not only name heteropatriarchial and institutionalized racism through which the women of Colour and their labour are tokenised, appropriated, co-opted and silenced in academia, we will also identify the moments for forging and fostering solidarities of resistance, belonging and social change. We seek new spaces of knowledge production that are agentic, productive, disruptive while driving change for and with the communities through which we each engage our work. This discussion panel offers a way to think about ‘political creativity’ and generative possibilities for forging solidarities of resistance and belonging.

Screenshot of the panellists on a computer screen.
The panellists: Screenshot by Torika Bolatagici.


2020 International Conference of Community Psychology at Victoria University had as its theme celebrating and interrogating “how solidarities are fostered and sustained within community contexts, across borders and boundaries, digital and non-digital spaces, and through process of knowledge production. Importantly the conference aimed to provide a critical platform for ideas and work emerging from coalitions with practitioners, artists, educators, activists, and diverse communities.