A study in Vaccine in August 2024 explores the role of “structural and historical inequities” in shaping access to COVID-19 vaccines for the transgender and gender-diverse (TGD) and disability communities in the Indian context. The authors take a participatory qualitative research approach, interviewing 45 individuals from the two communities and “other key stakeholders and health system representatives”. This process revealed several structural barriers, including information and communication gaps and barriers relating to transport and infrastructure. These gaps had “parallels in past health systems experiences”, indicating “longstanding and pervasive inequities” in health and allied systems. The paper highlights the need for avenues of “cross-movement advocacy and solidarity” as well as health system reforms.
COVID-19 vaccination
India initiated the “world’s largest” national COVID-19 vaccination programme in January 2021, delivering 2.2 billion doses of the COVID-19 vaccines by 2023. Although India’s vaccine acceptance rate “stands higher” than some high-income countries, there is a disparity between coverage in the “general population” and trans and gender diverse persons (TGD) and the disability community. In May 2021, around 11.7% of the general population was vaccinated but coverage was 5.22% for the TGD community. By November 2021, the rate was approximately 0.03% within the disability community.
“In India, the TGD and disability communities both face a higher risk of neglect, violence, and lack of family support. This, combined with stigma and discrimination, marginalises both communities, socio-economically and within the health system.”
These communities have higher rates of unemployment, lack of education, and poverty. Many people are dependent on “precarious employments” such as begging and sex work. Due to “poorer immune status” associated with disability, co-existing HIV infections, or poorer health in general, both communities faced greater risk of COVID-19-related mortality necessitating early vaccination. In the Indian context, both communities have legal protections. However, prioritisation of these communities for vaccination “lagged”, due to a “diverse set of factors at the individual, community, institutional, and policy levels”.
“Studies suggest that under vaccination in the disability community stemmed from systemic exclusion, attributed to lack of access, non-prioritisation, and anticipated social stigma. In the transgender community, negative past experiences and fear of getting traumatised had led community members to avoid visiting healthcare facilities.”
The authors infer that “structural ableism and trans-negativity”, along with “historical marginalisation”, play a central role in vaccine hesitancy for both communities. Barriers are described at individual, community, institutional, and policy levels:
- Individual – trust in systems involved in vaccination is tied to past experiences with vaccination and health systems. Concerns also arise about the potential adverse effects of vaccines on health needs and disabilities.
- Community – misinformation was reported among the TGD community, particularly the Hijra community, with many fearing that the vaccines would have a negative effect. “Inadequate” inclusion in clinical trials and a “dearth of information” on the effect of vaccines on different disabilities and gender-affirming interventions led to unaddressed concerns, delaying uptake.
- Institutional – clear ableism is identified in the design of vaccination programmes, from inaccessibility of vaccine-related information to vaccination centres. For the TGD community, the need for legal ID cards “posed a challenge”. Vaccination was also inaccessible and unaffordable, leading to reduced motivation for getting vaccinated.
- Policy – there no immediate government guidelines for vaccinating the two communities when the rollout began in January 2021. Later initiatives sought to address the inaccessibility of the appointment booking portal COVID Vaccine Intelligence Network (CoWIN). In May 2021, guidelines were released for the vaccination of persons without any prescribed ID proof.
“The health system’s approach in response needs to engage with these social determinants of vaccination and needs to go beyond hesitancy to focus on vaccine equity for marginalised communities.”
The study
The investigation involved a community-based participatory research approach (CBPR), engaging participants as partners. The setting was pan-India, drawing participants from 19 states, covering both urban and rural areas. In-depth and key information interviews were conducted to collect data:
- In-depth interviews (IDI) were planned with people living in India, above 18 years, self-identifying as transgender, gender non-binary, gender non-conforming, gender fluid, or identifying with a socio-cultural transgender identity such as hijra, kinnar, or aravani, and/or as a person with a disability.
- Key informant interviews (KII) were planned with other key stakeholders such as vaccine advocates, vaccine programme managers, media professionals, and vaccine providers.
Virtual interviews took place on Zoom, WhatsApp, or by telephone to ensure accessibility, lasting between 1 and 2 hours.
Four themes
Most participants from the TGD and disability communities reported motivation to get COVID-19 vaccines, but the “journey to immunisation” revealed a range of barriers in the process of deciding to get vaccinated and accessing vaccination. The authors identify four themes that reflect how the participants navigated structural inequities: information and communication barriers, procedural barriers, infrastructure barriers, and service provision barriers.
“While some barriers were distinct for both the communities, parallels in experiences provide a cross-movement platform for reflecting on the exclusivity of vaccination and health systems.”
Information and communication
Concerns were expressed about adverse effects with respect to specific needs. This was shaped by lack of information on the interaction of COVID-19 vaccines and gender-affirming care or HIV treatment. A lack of clarity caused confusion and fear for many respondents. Participants with physical disabilities and blood disorders conveyed concern about vaccines in relation to their disabilities, influenced by a fear of adverse effects that could potentially exacerbate their disabilities. On the other hand, a wheelchair user who got polio because she didn’t get the polio vaccine, expressed confidence in vaccination because of this experience.
Participants also attributed their anxieties about potential adverse effects to “systemic gaps in vaccine research communication and information dissemination”. Indeed, a lack of targeted vaccination communication for the disability community demonstrated a “structural neglect” of the community’s needs. Previous experiences with the health care system also reflected the “information inequity”. Thus, the omission of both communities within COVID-19 vaccination “exists within the context of a longstanding history of neglect”.
Process
CoWIN, the online vaccination appointment registration system introduced by the government in the pandemic, posed “certain challenges for vaccine registration”. High demand made it difficult to find a slot and led to frequent portal crashes. Participants with visual impairment, intellectual disability, and cerebral palsy reported that the need for “speedy action” made it challenging to book a slot. This exaggerated dependence on caregivers and non-governmental organisations (NGOs) for bookings. The Aarogya Setu application, which provided COVID-19-related information, and other digital apps for medical service access, were hard to access. This highlights “systemic patterns of digital inaccessibility for community”.
CoWIN also collected data on gender, providing only three categories: “male”, “female”, and “others”. The “others” category was introduced in the Indian Census of 2011 and has been consolidated by the Supreme Court of India’s “pivotal judgement” in 2014, which gave TGD persons a legal right to identify as male, female, or “third gender”. However, participants raise concerns that the gap in data collection is an “impediment for community members to advocate for equity”. The portal posed no question about disability.
The requirement of identity documentation created a barrier to access for the TGD community in a “unique and pronounced manner”. For example, many in the Hijra community did not have their documents, or had gender-discordant identity cards, which created discomfort and apprehension about unnecessary scrutiny. Demonstrating this, one participant was denied a second dose because the name and sex assigned at birth on their first dose vaccination certificate conflicted with their new Aadhaar card. Although the Central Government eventually confirmed that an Aadhaar card was not mandatory for vaccination, many centres maintained its importance.
“This not only invisibilises and stigmatises TGD experiences but also pits the right to self-determination against the right to access healthcare services, highlighting the marginal status of TGD persons and transgender rights in the government’s register.”
Transport and infrastructure
Once participants had decided to take a vaccine, participants encountered several challenges in reaching the vaccination centre. Some participants from the disability community reported travelling 20-30km to reach vaccination centre. They also identified a lack of accessible transport, particularly during lockdown periods. Regions with hilly terrain made it hard to implement disability-friendly infrastructure. Both communities reported that arranging transport was “challenging”, especially in rural areas.
Vaccination centres “embodied infrastructural inaccessibility in various forms”. For example, TGD persons faced challenges through “infrastructure shaped by gender binary orthodoxy”. Queues and washrooms were divided into men’s and women’s, affecting participants’ service experiences. This signalled “neglect and cis-binary-normativity” and forced “trade-offs between asserting their identity in that space and safely and seamlessly receiving their vaccination”. The physical accessibility of vaccination centres presented “wide-ranging challenges” to the disability community such as a lack of accessible parking or a requirement to stand in line.
Despite the existence of ‘Har Ghar Dastak’ (door-to-door vaccination), participants faced difficulties in accessing this programme. For the few who secured this, the process demanded “long and persistent efforts”. Many faced unresponsive providers, meaning they were left partially vaccinated despite being willing.
Mistreatment
Participants from both communities reported a range of “stigmatising and discriminatory experiences” from staff at vaccination centres. One TGD participant was denied entry, despite going through a community-led NGO. One scheduled caste participant with cerebral palsy faced caste-based discrimination and was denied entry to the hospital, even after sharing insight into his disability. Some participants with disabilities also shared that vaccine providers hugged them and took photos with them without gaining consent; this was viewed as “not only tokenistic but putting them at risk”.
“This points to the ableism in vaccination systems where disability inclusion is not seen as a matter of justice and enabling of rights but that of charity and patronising.”
Participants from both communities tried to ensure a safe, scrutiny-free experience through various strategies. These included presenting as cisgender or hiding a disability. Another approach was using a trusted contact, going through a group, or being accompanied by someone they trust as a “protective buffer”. These “self-preservation strategies” highlight the inequities that “predated and pervaded” COVID-19 vaccination. Many of these strategies emerged from anxieties that are rooted in “histories of exclusion and neglect”.
“Past experiences of inaccessibility, stigma, discrimination, harassment, medical negligence, and denial of services, within and outside the healthcare system, were commonplace.”
Some participants did comment their experiences of NGO and government-led initiatives that centred their needs. For example, government departments made efforts to establish vaccination drives for the transgender community in Kerala and for the disability community in Nagaland. Some NGOs and community leaders also engaged with these communities to “inform and counsel them on vaccination”. One NGO arranged home vaccinations in institutional settings with people with disabilities, and camps were established in Maharashtra to cater to the work schedules of the transgender and sex worker communities.
At many of these centres, staff were “sensitised”, and doctors worked with community leaders to build trust in the process. These accounts highlight the positive effects that government, NGO, and community partnerships can have for service users.
“Beyond access, an affirming, stigma free vaccination experience is a pillar of vaccine equity.”
Conclusion and comments
The researchers identify an “urgent need to reframe conversations” about vaccine hesitancy, emphasising inequities and structural gaps. They call for a paradigm shift to a “systems accountability approach”.
A member of the Disability Rights Alliance, Meenakshi B., filed a PIL in 2021 for better vaccine access for persons with disabilities and is quoted in The Hindu reflecting on the challenging experience of accessing COVID-19 vaccinations: “there were multiple barriers”. The barriers included lack of accessibility at vaccine centres and information. Indeed, although the centre released guidelines on providing care to persons with disabilities, “this was not met”.
Distinguished Professor of Public Health, Public Health Foundation of India, K Srinath Reddy, demands a system where outreach care is provided.
“Public health functionaries have to go to the person where necessary – the system has to initiate contact, rather than waiting for the person to come to the facility.”
This approach has benefits for vaccine safety monitoring as well. However, “this hardly exists in our urban healthcare scenario”. Professor Reddy also commented on the importance of engaging a “diverse set of people” in clinical trials.
“It is only when the trial is diverse that the health system can understand where problems and limitations lie and where special services may be required.”
The importance of encouraging diversity in vaccine research and development, as well as the need to engage diverse groups in vaccine communication strategies, return to the Congress agenda in Barcelona this October. To participate in these discussions, get your tickets here, and don’t forget to subscribe to our weekly newsletters for more vaccine updates.
