Disability data and its situational and contextual irrationalities in the Global South

Abstract

The inconsistent implementation of disability rights in crisis responses such as the recent COVID-19 pandemic has illuminated the double difficulty that persons with disabilities (PwD) must face. Ableism remains the basis for pandemic responses, leading to a range of irrationalities in collecting and using disability data during critical times. This commentary identifies situational and contextual rationalities in disability data collection and use in Global South. Through vignettes from Indonesia and Vietnam, this commentary illuminates the socio-technical and cultural infrastructure that perpetuates the obscurity of disability rights in the pandemic responses in, respectively, the largest democratic and socialist-communist countries in Southeast Asia. In addition to better listening to the voice of PwD, stronger engagement of organizations of PwD in policy making and programming is advocated for enabling more equitable pandemic preparedness, response, and recovery plans to manifest in future.

In early 2022, one of the authors had a meeting with a group of technical experts of a transnational organization intending to assist a government of a country in the Global South with a plan to design an equitable COVID-19 vaccination program. Among the questions raised at the meeting was “do we have on the ground data on people with disabilities (PwD) before delivering a series of information sessions on COVID-19 vaccines?” The answer to that question is not a simple yes or no given the context and situation of disability data in the Global South. While the question is essential prior to taking critical actions to respond to the volatility and velocity of the COVID-19 pandemic, some cautions pertaining to its (ir)rationality should be placed. This commentary shows (ir)rationalities in disability data used for creating equitable pandemic responses.

Hall's (1976) concepts of situational and contextual irrationalities inspire this commentary. The situational irrationality stems from the misuse of one situation on the other despite their inherent differences. The contextual irrationality comes from mismatches in understanding differences when making inferences about effective actions. Both situational and contextual irrationalities lead to ineffective approaches to the nuance and dynamic of social interactions (Hall, 1990). Thus, if inferences based on such irrationalities are used for informing decisions and actions, then various undesirable outcomes may follow. The irrationalities need mitigating for effective and equitable decision making (Staffel, 2019), particularly when the decision will affect groups who have been historically marginalized. Given that, this commentary holds the potential to further conversations on data and disability as most disability studies have revolved around technological access and health, which to a greater extent are predominated by Global North perspectives (Goggin, 2017). Specifically, this commentary may help grow a discourse on disability data, surveillance, and disruptive events in the Global South where the discourse around disabilities is often around the digital divide but neglects the need to strengthen the capacity of PwD to protect and control their personal data as well as using quantitative and qualitative data for advocating their rights, primarily during emergency situations.

With that in mind, we select Indonesia and Vietnam for illuminating irrationalities in the disability data use in emerging economies. Disability rights have been implemented inconsistently and PwD face continuous socio-economic, political, and cultural stigmas in the two countries (ESCAP, 2019) while the pandemic has been reported to have more severe health, economic, and socio-technical ramifications for the developing world (Stiglitz, 2020). The vignettes we used as examples were drawn on observation and participatory participation in a series of online information sessions on vaccination programs for PwD in Vietnam and Indonesia from November 2021 to February 2022, as well as a reflection of interview data we collected in February–May 2021. In the two countries, data on PwD affected by the health and socio-technical ramifications of the pandemic was arguably scarce while immediate actions to mitigate the ramifications were urgent.

Governments used everything in their pandemic playbooks, from staying in shelter, social distancing, to suspending non-essential businesses (Felter, 2022). In the beginning, the need of PwD was obscure; then, gradually prioritized in vaccination programs. But the complexity of disability data uses later became more apparent as the vaccination program and other efforts to expedite pandemic recoveries began to roll out. A pocket of PwD were unvaccinated because of unavailable support for going to vaccination sites and abundant doubt rooted in mis/disinformation and inequitable information (Rohman, 2022). This situation, if remains unaddressed, will risk the life of PwD further, which to a great extent will affect everyone else given the nature of the pandemic as a collective crisis with multiple repercussions to people across social classes and abilities (UNDP, 2021). To avoid the unexpected political consequences that may arise from this commentary, it is worth stating that this commentary is not intended to criticize the government's pandemic responses. Rather, it intends to identify two forms of irrationalities as a set of backgrounds for collecting and using disability data during a crisis. Thus, potentially providing insights for policy makers in Indonesia and Vietnam to implement disability rights consistently when critical decisions need to be made in future crises.

Situational (ir)rationality in disability data use

A situational (ir)rationality arises from the misuse of a certain situation to the other. The question mentioned at the beginning of this commentary about the existence of on the ground data is an example. Most disability data available at the beginning of the pandemic can be classified as “low involvement data” such as demographic surveys and census. The reliability of such quantitative data varies, where many lower- and middle-income countries often struggle with collecting and managing the data (Dahmm, 2020). In Indonesia and Vietnam, the variation may stem from issues surrounding the classification and counting of individuals with different forms of disabilities where those residing in remote areas and living within indigenous groups are often left behind due to geographical access. The low involvement data is still useful for understanding the mass, the collective, and the macro. However, considering the unique but complex lived experience of PwD, that data will be limitedly capable of identifying viable interventions, particularly when a pandemic abruptly occurred. In this case, “high involvement data” is needed to better understand the individual and the micro, hence addressing PwD's need to protect themselves and recover from the pandemic. One may suggest amassing social media data to understand the needs but collecting and using a fraction of such a “big” data to identify forms of disabilities can be arduous and possibly raise serious ethical concerns due to inconsistent or absent regulations in the two countries.

A situational (ir)rationality lies within the continuum of normal versus crisis situations, where high-involvement and low-involvement data are necessary for taking critical actions. Besides in the misuse of low-involvement data when high-involvement data is more appropriate to use, the situational irrationality manifests when the question of data for designing and implementing programs and policies during non-crisis situations is applied during a crisis. In a non-crisis situation, urgency is absent whereas in a crisis many critical decisions need to be made within a limited time (Claeys and Coombs, 2020). Applying non-crisis practices into a crisis, hence delaying on taking actions because of data unavailability indicates a sense of situational irrationality, which during the pandemic it has hindered the urgent need to protect vulnerable groups.

To be situationally rational when data on PwD is inadequate or absent, particularly in areas where the digital infrastructure is inaccessible and unaffordable, the existing human infrastructure has the potential to be galvanized for collecting data while simultaneously delivering immediate assistance. In Indonesia, the on the ground human infrastructure comprised leaders of organizations of PwD and members of civil society groups. They deployed personnel consisting of volunteers for recording high-involvement data, general practitioners for checking the PwD's overall health condition, and specialist doctors for examining those with comorbidity and the immune-compromised. They provided what PwD needed the most during the pandemic while collecting data for better pandemic responses.

In that regard, talk and touch methods are situationally rationale for collecting data when the need to immediately protect the most vulnerable living in a poor digital infrastructure is also present. The volunteers and medical teams have the chance to collect information, stories, and descriptions of the problems, which can later become a set of data potentially useful for generating a holistic picture of the struggle and battle the most vulnerable deals with. Hence, allowing for designing responses that stem from both low and high-involvement data. In other words, when protecting the most vulnerable is urgent, requesting for adequate data at the beginning can indicate an act of irrationality. Data will emerge on the go as the human infrastructure safely interact with the most affected individuals, where a better understanding of their issues, needs, fears, and doubts will gradually manifest.

Contextual (ir)rationality in disability data use

Contextual (ir)rationality is observable when there are mismatches between the characteristic of disability data with the assumptions underlying its use. Often, that stems from an unconscious ableism among policy makers. For example, leaders of Vietnamese organizations of PwD expressed that the available disability data was only used for identifying who were eligible for welfare support from the government. In this sense, the use of data seemed to ignore the diversity in disability types, PwD's needs, and the severity of their disabilities. Disability issues had been reduced to economic measures rather than being viewed through a larger socio-technical, cultural, and political lens. In comparison, data recorded by local organizations of PwD (OPD), although giving a closer understanding of the situations of the registered members, was not used in the upper-level decision making. Such a discord in the use of data then hinders efforts to provide equitable vaccination information and document the vaccinated, the unvaccinated, and the immune compromised. As the Delta and Omicron variants raged in 2021–22, information pertaining to self-isolation, home treatment, and testing remained limitedly accessible to PwD. Broadly, this example of data use embodies ableism that dominates decisions made for protecting and empowering PwD.

Mass media also continues to become the spreader of ableism (Ogundola, 2019). Although they have important roles in helping disseminate pandemic-related information, their framing often reflects a chronic ableism suffered by the journalists. At the front stage, the media's ableism appears in the way the discourse of vaccination for PwD is portrayed as a public theater of compassion rather than within a frame of public health concern or disability rights. Headlines often contain words that emphasize on the physical inabilities of PwD instead of their rights to equitable information and protection. Vaccinating PwD is reported as an expression of compassion rather than protecting their rights as citizens. Frequently, content related to PwD is told in a way that sustains the view that they are family and social burdens. Consequently, continuing the existing stigma toward PwD.

In the backstage, the ableism simply originates from an acute ignorance. An informal correspondence between the first author and a journalist from a prominent Vietnamese news outlet on the inaccessibility of some mobile apps for users with disabilities (UwD) demonstrated just that. The journalist emphasized on the glitch of the apps rather than paying attention to the need for improving access and creating apps accessible for diverse users. When Grab, a widely used mobility app crashed, rather than asking how that might affect the mobility of UwD, the immediate utterance from the journalist was that the app has been crashing all the time. Thus, it was considered as news unworthy. In this brief correspondence, the journalist seemed to deploy their ableist view in seeing the intersection of disability and technological accessibility. If left unmitigated, that view potentially creates more invisible barriers to de-stigmatizing PwD in the country.

The contextual (ir)rationality surrounding disability data collection and use have perpetuated the systemic marginalization of PwD, which in the context of this commentary both policy makers and media workers have remotely given attention to due to their chronic ignorance of disability rights. Thus, when a crisis that requires an immediate response occurs, PwD are often invisible (O'Sullivan and Phillips, 2019), resulting in public policies and discourses that put PwD on a pedestal rather than placing them as a full citizen with equal rights (Beckett, 2005). The contextual (ir)rationality, in that light, is the cause for the obscurity of disability rights in the past and present crisis responses. The circuit of ignorance can be broken when the disability data is collected and used in a contextually rational approach.

One strategy to do so is by synergizing the high-involvement data OPDs have collected with the existing approaches based on the low-involvement data. The high involvement data is expected to be messy given the limitations and challenges the OPD inherently face when collecting data with limited resources and skills at critical times. But the insights emerging from it hold the potential to be used for designing and implementing equitable crisis responses. Given that, increasing support for and the capability of OPD to collect data is essential for improving the availability of the data. That way, accessible and retrievable data to build the infrastructure and policies that can protect and enable PwD to be resilient against future pandemics can be built.

Toward equitable pandemic response and recovery plans

As disability data is inundated by irrationalities, inequitable crisis preparedness, response, and recovery plans are expected. In Vietnam and Indonesia, pandemic hotlines offered limited assistance to the Deaf while the Blind was unable to access information related to health protocols due to inaccessibility issues. Many TV news channels were unaccompanied with sign language interpreters despite a big portion of information about testing and treatment being circulated on TV. During the lockdown period, the wheelchair users received scant mobility support for going to vaccination centers, which were not only far away from their locations but also unfriendly to wheelchair users. When all public transits were halted during the stay-in-shelter period, the sense of independence they wanted to be dissipated rapidly as they became more dependent on others to stay safe. Such equitability issues stem from a limited commitment to implementing disability rights when disability data is neither available nor used rationally. Hence, PwD in the two countries face a double difficulty resulting from the pandemic and perpetual ableism.

To design inclusive pandemic response plans, paying attention to diverse issues affecting a range of PwD and their voices is needed. When disability data is limitedly available, an awareness of the disability rights will lead to a conscious action to design more inclusive plans. In this light, PwD, together with other groups who have been historically marginalized, are in the priority list throughout different stages of the pandemic rather than as an afterthought like it has been observable in the two countries. The future pandemic response plans must equally center on safety and equity. Safety often emphasizes on the greater population and relies on the already available low involvement data whereas equity centers on the lived experience and individual situation of PwD and requires high involvement data, which, as noted earlier, might be scantily available and need collecting on the fly. Rather than being seen as one is more crucial than the other, both safety and equity need to equally inform future pandemic response plans.

While deconstructing ableism in the society may take time, mitigating irrationalities in disability data use, as well as creating inclusive response plans, is a matter of political commitment. The high and low involvement data can be interlinked when the need to make decisions in critical times arises by better engaging OPD in the design of the response plan. The pandemic has magnified the lack of capacity and support for OPD in low-middle-income countries, in addition to limited collaboration among themselves and with policy makers (Inclusive Futures, 2021). OPD in Western Indonesia are more developed than those located in Central and Eastern due to the legacy of the developmental divide during the New Order Era (1966–1998). Vietnamese OPD are concentrated in the North given the existing politics and powers in the capital city. Different from Indonesia, where disability movements seem to be more dynamic given the country's democratic system, many Vietnamese OPD struggle with maintaining organizational operations due to limited resources and political constraints. Despite such different geographical and political circumstances, an inconsistent engagement of OPD in the inclusive pandemic response formulation is a common issue the two countries need solving. Strengthening the capacity of OPD to collect and use disability data, as well as understanding the politics and ramifications of data surveillance, is a way toward an inclusive response to future pandemics.