The COVID-19 pandemic has been marked by discourses of ‘vulnerability,’ in other words, identifying groups at increased risk of infection or diseases; and practices of ‘othering,’ meaning the targeting of marginalized groups, often as if something is ‘wrong’ with them. Some populations have been deemed ‘vulnerable’ due to socioeconomic factors beyond their control, and even whole countries have been blamed for negative outcomes, as was the case in South Africa, when Omicron first emerged. On both accounts this has led to stigma, discrimination and exclusion. If we take the concepts of solidarity and justice seriously, we must consider how pandemic preparedness and response activities can proceed in a manner that avoids stigmatizing, blaming, and othering ‘vulnerable’ populations.
Dr Florencia Luna, FLACSO – CONICET, Buenos Aires, Argentina.
Dr Tamara Giles-Vernick, Unit Head, Anthropology & Ecology of Disease Emergence Unit, Institut Pasteur, 25-28 rue du Docteur Roux, 75724, Paris Cedex, France
Professor Thomas Shakespeare, International Centre for Evidence in Disability, London School of Hygiene and Tropical Medicine, United Kingdom of Great Britain and Northern Ireland.
Dr Aqsa Shaikh, Department of Community Medicine, Hamdard Institute of Medical Science and Research, New Delhi, India.
Dr Luna began the discussion by arguing for a new conceptualisation of vulnerability. Traditionally, vulnerability has been assigned to minority populations. However, this is problematic for a variety of reasons. Firstly, it tends to create an overpopulation of vulnerable groups. Secondly, it also stereotypes individuals and places a label on them that can’t easily be taken off. Thirdly, it may also be inaccurate, identifying vulnerability in sub-populations that may not in fact be vulnerable. Fourthly, it is increasingly becoming irrelevant. As Carole Levine and her colleagues state, the concept of vulnerability is ‘so nebulous that it becomes meaningless.’ In one way or another it suggests ‘everybody’(i) is vulnerable. Dr Luna, drawing on her own research, argued than an alternative approach is needed; one which can retain the concept of vulnerability but also ensure it is more relational and dynamic. It would, according to Dr Luna, account for different ‘layers’(ii) of vulnerability all of which intersect and co-exist. These layers include, but are not limited to: lack of consent, socio-economic conditions, age, gender, race, health status, and so on. Dr Luna argues that layers are latent; that is to say, they only become apparent when a stimulus condition triggers them. If that stimulus condition does not occur, that layer will never be actualised. Drawing on a recent example, she said a lack of protective equipment during the COVID-19 pandemic could be considered a stimulus condition for medical personnel which triggers a layer. Layers are triggered, but may exacerbate existing vulnerabilities or generate new ones as well. Dr Luna calls this the ‘cascade layer of vulnerability’.(iii) For example a public health policy of isolation for informal workers, women, children or teenagers in the context of violence could create a cascading effect of vulnerability. There’s a need to prioritise major and minor harms among the layers, and determine our obligations toward them. More simply, we should work to reduce, minimise or eradicate layers through policies, processes and principles such as safeguarding and empowerment.
Dr Tamara Giles-Vernick began her presentation by introducing Sonar Global; a research project, which through multiple global partnerships and hubs, aims to build a network of social scientists seeking to prepare, prevent and respond to infectious disease outbreaks. With the eruption of the 2020 COVID-19 pandemic, the project mobilised and began working across seven countries (Uganda, Bangladesh, Italy, France, Germany, Malta, and Slovenia) rolling out a ‘vulnerability and resilience assessment.’ This assessment was designed help identify local and cross-cutting factors that reduce or augment marginalisation, identify new processes of marginalisation and exclusion, and finally develop policy recommendations based on local insights. In terms of methodology, the assessment was qualitative and used a 52 point health and demographic data questionnaire and semi-structured interview to learn about participant experiences and understand how and why certain people are more vulnerable than others. The results were then analysed to effect informed policy change. Like Dr Luna, Dr Giles-Vernick argued that for this and future assessments to be effective, a new conceptualisation of vulnerability is needed. Turning to Napier and Volkman’s Vulnerability Vortex (2020), she highlighted the fact that all people are potentially vulnerable, facing transversal, complex, and compounding challenges that increase the risk of exclusion. This ethnographic bottom-up approach is crucial to understanding how individuals and communities rebuild agency. Resilience by the same token is about enhancing capacities to cope with such challenges. How then, do we move beyond “vulnerable groups”? Dr Giles-Vernick argued health is made and broken outside of the health sector. We are all potentially “at risk”, and resilience emerges from complex factors which facilitate agency and provide a sense of meaning to lives. There’s a need to focus on complex transversal and interacting factors in order to develop flexible and adaptive policies that address specific priorities needs and constraints. Finally genuine collaborations between researchers and diverse stakeholders is warranted.
Professor Thomas Shakespeare spoke about ‘vulnerability’ in relation to disabled people; particularly those with learning disabilities. He argued that the idea that everyone is vulnerable is inaccurate. COVID-19 mortality rates among different population segments, show clearly this is not the case. In fact, statistics from both England and Scotland, show that individuals with learning disabilities are at higher risk of severe illness and death from COVID-19. Furthermore, those who do die often live in residential settings where support is limited. Finally, individuals with learning disabilities who presented at hospital with COVID-19 were admitted at a later stage, and were often met with poor symptom recognition on the part of doctors. In light of this Professor Shakespeare asked - are disabled people an afterthought? Do they indicate a lack of thought? Or no thought at all? Professor Shakespeare commented that the statistics outlined here are from the UK and this is because the UK has data. Most countries don’t. However, it’s likely to be as bad or worse in other places. Professor Shakespeare also spoke a little on the concept of vulnerability. Drawing on Courtney Cooper’s editorial in the BMJ, which speaks about the extreme vulnerability of people with learning disabilities to COVID-19, and Chris Hatton’s remarks that it is actually the way society treats disabled people that’s the problem, he highlighted an important question: How much vulnerability is intrinsic and how much is extrinsic and contextual? Referencing Martha Fineman’s theory of vulnerability which posits vulnerabilities as being embedded in social relationships and within social institutions, he argued, that there are embodied differences arising from biology, ethnicity, gender and so on. However, the way these have been constructed to create hierarchies of bias, as well as the pejorative labelling of individuals with intellectual disabilities as being incapable, inferior, weak or dangerous, is imposed . Embedded differences arise from economic, social, and cultural relationships. So rather than look at individuals we should look at structures: inaccessible and inconsistent information, work precarity, enforced isolation and stigmatisation. Professor Shakespeare noted that during the pandemic, disabled peoples’ organisations took on the role of the state, providing information, emergency food, and PPE. However, their reach was limited and so as a whole, disabled people in the UK were very much more excluded and more vulnerable to COVID-19.
Dr Aqsa Shaikh finished the panel discussion by discussing the half-million transgender and non-binary individuals in India. Dr Shaikh argued that COVID-19 both highlighted and exacerbated existing historical and entrenched inequities, all of which existed prior to the start of the pandemic. The TGNB community in India is more likely to die from COVID-19; this is, firstly, because they lack access to physical and mental healthcare, which is either unaffordable or unavailable; and secondly, during the pandemic they also faced an increase in domestic violence, conversion therapy, corrective rapes, and forced marriages. Most trans-persons in India have been historically linked to professions like begging. However, during the pandemic, evidence suggests that no one wanted to give them money, or even roll down car windows. Paid to give blessings to children and newly-weds, trans-people also found themselves disinvited to all functions. Because of India’s patchy record-keeping, the true number of trans COVID-19 cases and deaths is unknown; the same is true of vaccination rates. Anecdotal evidence suggests that right now there is a fear and hesitancy in this community. This is because trans-people have often had horrific experiences with the Indian healthcare system, including hostile doctors. There are also financial, societal and family barriers they must face. Dr Shaikh argued that India’s COVID-19 vaccination drive was ‘othered’ from the start, with transgender individuals, quite literally invited to tick the ‘other’ box in regard to gender when they filled out vaccination-related paper-work. A digital divide further compounded marginalisation, as did the illiteracy rate which is around 54%. The cost of vaccination was prohibitive, including the cost of the vaccine itself, as were transportation costs. In regard to vaccine trials, no trials included trans-people despite the fact that they are a vulnerable community. As a result, and unsurprisingly, there is not much confidence in vaccines and delivery was also problematic. What then are the solutions? Dr Shaikh argued for greater visibility of the community, accessible vaccination centres, door-to-door vaccination drives, community involvement, and auditing for equity purposes. There’s still a long way to go, but the pandemic is a reminder that the measure of civilisation is how it treats its weakest members.
What are the recommendations for the next pandemic, how can emergency and preparedness plan, be more disability conscious or inclusive?
Professor Thomas Shakespeare said the most important principle is that disabled people shouldn’t be an afterthought. During the pandemic many people with the virus were shipped out of hospitals, into care hospitals where they seeded the virus there, thereby increasing risk. Individuals with learning disabilities who required personal assistants couldn’t get PPE. These things show a lack of thought. He concluded by saying that what we are asking for is simply that disabled people are considered. It’s nothing special, it’s simply inclusion in planning.
Are there solutions that the Trans community can identify themselves, or have at least been identified by an academic group?
Dr Shaikh commented that research involving TGNB individuals involved community participation; particularly looking at the different lived-experiences of both researchers and research participants. She highlighted that her team had investigators who come from the disabled and trans-community, and so this community participation is important in terms of co-producing solutions.
The final thoughts, priorities and challenges for the next year.
Dr Giles-Vernick went back to her original point, commented that she wasn’t saying ‘all people are vulnerable’ but that all people are potentially vulnerable. That is not to say that there are not people who are not more vulnerable than others. In fact, 60% of the interviewees in the vulnerability and resiliency assessment were disabled. Therefore, there’s a need to look at the epidemiological figures and qualitative experiences of vulnerable groups and identify the ways in which institutionalisation fragilises social groups within the population. She reiterated that is not the same as the statement all people are vulnerable. Professor Luna agreed, arguing that vulnerability is not something which is essential, but rather created out of context. Professor Shakespeare argues when it comes to vaccination don’t forget disabled people, they are almost always disempowered and so need to be remembered in the formation of any strategy. Dr Shaikh emphasised the importance of data - that researchers shouldn’t just go by quantitative data, but also study the narratives which arise from the community. Dr Giles-Vernick agreed. As a qualitative anthropological researcher, she argued there’s been a lot of resistance from national governments who rely on numbers, but stories humanise experiences and therefore need to be included.
(i) Carole Levine, Ruth Faden, Christine Grady, Dale Hammerschmidt, Lisa Eckenwiler, Jeremy Sugarman, (2004) ‘The Limitations of “vulnerability” as a Protection for Human Research Participants,’ American Journal of Bioethics 4:3.
(2) Luna, F., ‘Elucidating the Concept of Vulnerability. Layers not Labels’, International Journal of Feminist Approaches of Bioethics, vol. 2, no. 1, spring, 2009.
(3) Luna, F. ‘Identifying and evaluating layers of vulnerability – a way forward’ Developing World Bioethics, 2018 (1-10) doi 101111/dewb.12206.