Disease is a collective responsibility, not a global burden
Beauty considers the impact of measuring and discussing chronic conditions like Long Covid in terms of social and economic burden, arguing these narratives undermine global initiatives towards health equity.
COVID-19 is often reported as a 'mild' illness for the young and healthy. Reinforced by parroted versions of the phrase “the disabled and elderly are the most likely to die from this virus”, the underlying assumption in these statements is that those vulnerable to the virus are of lesser social importance and value, perpetuating stigmatising treatment of the elderly and people with disabilities. Risk discourse around COVID-19 therefore further normalises ableism, which is especially unjustifiable in the midst of a global health pandemic as so many people needlessly lose their lives.
Moreover, the experiences of people with Long Covid and other COVID-related complications portrays a completely different reality. Countless threads on twitter, and the emergence of grassroots organisations and health activism, provide evidence of prolonged symptoms in young and healthy people who get the virus. While many able-bodied young people were manipulated into thinking they could relax, many people with disabilities—including Imani Barbarin, the disability rights and inclusion activist—predicated differently, warning the public from early on: the COVID-19 pandemic is a mass disabling event.
As the number of reported cases of COVID-19 exceeds 600 million globally, there is growing awareness and concern about long-term chronic conditions which appear to be associated with the virus—both in those with existing underlying conditions and in those developing illnesses after infection. Conditions people are at risk of developing include chronic diseases (also known as non-communicable diseases) such as heart disease, diabetes, and mental health illnesses. The chronic nature of these conditions means they are likely to impose a larger “burden” of illness: non-communicable diseases already account for more than half of the global burden of disease on healthcare systems. As a result, the long-term effects of COVID-19 have captured the research focus and funding of several global public health scholars.
Currently, the primary way health is measured, compared, and contrasted between countries is by creating a comprehensive picture of disability and mortality factors over time, stratified by age and sex. This is done using the “The Global Burden of Disease” (GBD): a project involving more than 1,000 researchers in over 100 countries that pulls together data on premature death and disability from more than 300 diseases and injuries in 188 countries from 1990 to the present. Its aim is to enable the global health community to make ‘meaningful’ comparisons between countries by ranking the diseases and risk factors by overall burden on a population. This ‘burden’ is measured by disability adjusted life years (DALYs) combining two indicators: the number of years of life lost to disease (YLL), and the number of years lived with disability (YLD) as a result of disease. One DALY represents one year of healthy life lost because of poor health or premature mortality.
“the GBD provides a monolithic understanding of disability that neglects nuance, cultural difference, and lived experiences of disability”
Arguably, the only reason health is quantified through the GBD is to inform the global health agenda and its priorities. However, in reality, such measures provide inaccurate information with regards to disability as they are often taken from areas with limited data collection access. Moreover, the GBD provides a monolithic understanding of disability that neglects nuance, cultural difference, and lived experiences of disability. As such, the GBD reinforces understanding of disability as an economic and social burden, for example the idea that being sick (and therefore ‘unproductive’) is often described as a ‘cost’ to the UK’s economy.
The most apparent way in which the GBD fails to accurately represent disability is that its primary measure—the DALY—is ultimately based on a non-disabled ideal of quality of life. A lot of the data used is self-reported and therefore reliant on objective understandings of what ‘quality of life’ means, which in this framework, is focused on the absence of ill-health. This means that the quality of life of people living with disabilities is being compared and contrasted to an able-bodied experience, rather than measured as quality of life within a disabled value system. Able-bodied interpretations of GBD data are exacerbated by the fact that the voices of people with disabilities are often excluded from both the measuring process and quantitative analysis itself.
“This means that the quality of life of people living with disabilities is being compared and contrasted to an able-bodied experience, rather than measured as quality of life within a disabled value system”
Although DALYs are not endorsed for use in health economic evaluation, they are commonly used in cost-effectiveness analyses of interventions in low- and middle-income countries in accordance with guidance issued by the World Health Organisation (WHO) and the World Bank. The interventions developed out of cost-analysis are often focused on prevention: preventing or limiting the economic burden of long-term disease on any given country's healthcare system and government. However, discussing illnesses in terms of economic burden means that our social language on health easily shifts into one of individual productivity and accountability. In this way, prevention discourse places blame and responsibility for the barriers encountered by people with disabilities on themselves, rather than on systemic injustices that prohibit people with disabilities from participating happily and healthily in our collective society.
“discussing illnesses in terms of economic burden means that our social language on health easily shifts into one of individual productivity and accountability. In this way, prevention discourse places blame and responsibility for the barriers encountered by people with disabilities on themselves, rather than on systemic injustices that prohibit people with disabilities from participating happily and healthily in our collective society”
Considering all this, framing COVID-19 as a social and economic burden can become problematic. We can already see the repercussions of thinking about disease as an economic and social burden in the ways Long Covid has been reported and discussed. For example, many people refused to get the vaccine on the premise that the vaccine could cause long-term disabilities—which is understood to be misinformation. The implicit message in these reports is that people are more concerned about developing a disability from a vaccine than risking death from the virus itself. Besides from being blatantly ableist, this stance is also ironic given the vaccine is designed to protect people from both severe disease as well as death.
Even COVID-19 coverage from health experts has shown that the lives of those who are chronically ill or disabled are expendable. In a glaring example, the media were slow to bring attention to early medical rationing guidelines that diverted resources from disabled patients to those with a “greater return on investment”. Research revealed that one in three patients admitted to the hospital during the first wave of the pandemic were given Do Not Resuscitate (DNR) orders. Considering that six in ten covid-related deaths were people with disabilities, it’s likely that the disabled community were disproportionately on the receiving end of these orders.
“A narrow view of health and disability is sustained by the lack of health research that prioritises finding value in people living with disability, where capitalism ascribes none otherwise”
A narrow view of health and disability is sustained by the lack of health research that prioritises finding value in people living with disability, where capitalism ascribes none otherwise. Framing the experience of anyone with disease as a burden acts as a reminder of the ableist understanding of disability which fails to account for the experience of disease and disability as multi-faceted and layered. However, living with chronic illness or disability does not equate to precarity, poverty, isolation or a ‘poor quality of life’ as many still assume. It is our responsibility to care about the quality of life of those with disabilities, in spite of whether we have them or not.
We must therefore pay as much attention to Long Covid and other long-term complications as we do to COVID-19 itself. Long Covid is still under-recognised as a serious and important outcome of the pandemic. Although people with disabilities have increasingly fought to be able to use their voices and stories to inform the masses, there is still a struggle to be believed or validated as reliable narrators of their experiences. In our understanding of disease, non-disabled people are more likely to be given platforms to theorise, write, and research disabilities than people with disabilities themselves.
“In our understanding of disease, non-disabled people are more likely to be given platforms to theorise, write, and research disabilities than people with disabilities themselves.”
In this light, instead of thinking about disease as a burden, it might be more beneficial to think about it as a collective global responsibility. This reframing would move global health as a field closer to its aspirational aim of health equity. It would ensure that a range of key global health actors including policy makers, public health and medical professionals, and all of us are mobilised to improve the standard of health research. Moreover, mutual responsibility would help ensure that priority setting on the global health agenda was not driven by politics or money, but instead by placing value on lived experiences in the search for better health.
Given that global health is a discipline that aims to achieve global equity, the measures that it uses to describe and reduce disability mean that it will never be able to achieve its goals. Arguably, DALYs and the GBD goes against the very ethos of global health: as measures of disease that discriminate against lived experiences of disability, they are not rooted in the equity that they desire to attain. In order to make global health a discipline representative of global experiences, we need to consider the experience of chronic disease and disability as an ongoing collective concern that demands empirical investigation and institutional action—action that is informed by the voices of those who are chronically ill and disabled themselves.
