Statement on the situation of people with disabilities in the context of the Covid-19 pandemic

El CLACSO Working Group on Critical Studies in Disability It expresses its concern regarding the approach to the specific situations and problems faced by people with disabilities in the context of the COVID-19 Pandemic and the definitions of state public policy in our countries, in which it is clearly evident, on the one hand, incipient decisions in relation to the comprehensive protection of their lives, families, caregivers, and networks of collaboration, support or assistance, and, in turn, the reductionism in the perspective from which the proposals are generated.

The persistence of institutional and community perspectives anchored in the idea of ​​disability as an illness and/or personal tragedy, the careless hyper-visibility of people who require specific support, the public sacrifice of difference that involves accounting for disability in order to validate care measures, the lack of coverage or suspension of some support systems, along with the absence of intersectional readings of the reality experienced by subjects with disabilities, assuming that their bodies and identities do not bear marks of social class, gender(s), sexuality(ies), age, “race”, ethnicity (among others), are some of the actions that re-position disability as an individual/family issue that generates disadvantages per se.

Thus, to the detriment of the historic struggles led by the disability community and its allies, supporters, and activists at the global, regional, and local levels, the fundamental role of social barriers and values ​​in the generation of disability is rendered invisible. Furthermore, an ableist framework exists that currently frames the discussion about the lives of the "weak" and elderly as a risk to capitalism, given the high costs of sustaining unproductive, sick, and unlivable lives. As critical perspectives emphasize, disability is not a personal problem that generates inequality, but rather an oppressive and structural social construct that requires transformation through intersectional and inclusive policies that, at a minimum, recognize ableist violence as structural within the constitutions of states and their institutions.

In recent decades, a new framework has emerged from perspectives of citizenship, recognizing social struggles and, to some extent, linked to the regional ratification of the Convention on the Rights of Persons with Disabilities (2006). These processes urge states to consider disability in a critical way, and to address the removal of all barriers created by the ableist, colonial, patriarchal, colonial, capitalist, normalizing world system: architectural, communicational, epistemic, related to services and common goods, pedagogical, and so on. Today we observe with dismay how the idea of ​​"disability" (which denotes a social, economic, cultural, and human hierarchy of "lesser value") is once again being staged, which not only has practical consequences for the living conditions of people with disabilities, but also symbolic ones: as a result of the naturalization of these disqualifying social processes, disability becomes an attribute that generates a life that is neither full nor productive, a "social/family burden," and, faced with the need to choose which lives matter, losing its intrinsic value, making an ethical-political discussion necessary in the face of the onslaught of necropolitics, both individually and collectively.

While it is established that people with disabilities constitute one of the most vulnerable and unprotected groups within capitalist social security systems, this situation is not necessarily inherent to individuals and their unique characteristics, but rather to contexts of persistent exclusion, segregation, and dehumanization in our countries. The COVID-19 pandemic reaffirms a foundational premise: Contemporary capitalist societies are structured upon a socio-cultural, epistemic, and political process of disabling, which produces, governs, and regulates populations, communities, and individuals with disabilities, especially through mandates regarding reproduction, efficiency, productivity, normality, health, perfection, and so on. As an academic network of CLACSO, our Working Group currently comprises 62 researchers, activists, professors, and students, with and without disabilities, from Argentina, Bolivia, Brazil, Chile, Colombia, Cuba, Ecuador, Spain, France, Mexico, Peru, Paraguay, and Uruguay. In all our countries we are experiencing the current pandemic, with some similarities and with profound situated and embodied differences.

Our activism and political, epistemic, and ontological commitment motivates us to produce or weave this first exploratory working document for the CLACSO Thinking about the Pandemic Observatory, recognizing that we must unite efforts, wisdom, creativity, and eroticism to understand and transform what is happening to us in this pluriversal moment of feeling and thinking with and from disability, in these pandemic times and times of civilizational transitions.

With all this and more unsaid, it is necessary to consider some of the following issues, taking into account our own constitutive heterogeneity as a Working Group:

We salute, recognize, and celebrate the efforts of all people with disabilities, their organizations, communities, families, solidarity networks, support networks, accommodations, and allies of the social movement, for the countless and often invisible efforts they have been making, creating, and weaving together to dignify all aspects of life during these uncertain times. We also acknowledge some of the measures and regulations that are beginning to be explored by some of our government entities. 

In particular, we echo the exhortation and appeal issued on March 17 by the UN Special Rapporteur on the Rights of Persons with Disabilities, Catalina Devandas. We are convinced that the Thinking about the Pandemic Observatory can be an ideal platform to host and disseminate this and other information generated around disability.

It is important to recognize that the term "disability" encompasses a wide range of life experiences, identities, subjectivities, markers, trajectories, desires, bodies, languages, cognitions, discomforts, struggles, dreams, and hopes, in which heterogeneity is a fundamental characteristic. Disability, as an experience embodied in specific individuals, requires intersectional political interpretations that enable us to understand its complexity and address the care of life, acknowledging the oppressions that operate and circulate in contexts of mandatory confinement or isolation.

The prevention and/or mitigation measures to combat the pandemic that have been generalized to all populations in our countries have the obligation to consider and address the specific conditions and needs experienced by people with disabilities, their families and caregivers, who are also profoundly diverse.

We urge states to activate multiple mechanisms, including online platforms and telephone or mobile hotlines, to enable people with disabilities, especially girls, young women, and women, to speak out against gender-based violence perpetrated by those with whom they are confined during the pandemic. It is crucial to remember that women with disabilities are among those who suffer the horrors of sexual abuse.

Mandatory confinement is a normalized practice for millions of people with disabilities around the world, and today, when it shapes everyone's daily life, it implies opening the doors to recognizing how seclusion or restriction to certain spaces conditions ways of life that do not dialogue with the freedoms or human rights inherent in our States.

We call upon grassroots social organizations and alliance networks to continue generating powerful collective actions in each of our countries, communities, and territories, actions that will allow us to forge bonds of solidarity, sisterhood, and unity in the face of the onslaught of capitalist, patriarchal, racist, and ableist forms of social relations that insist on competitiveness and individualism. Today, more than ever, it is only possible to sustain life in its entirety if we all work together. Therefore, all actions, strategies, projects, and initiatives that, in the face of state neglect and inaction, allow us to combat hunger and unemployment, and access psychosocial, health, educational, and other support tailored to the specific needs of each of our communities are welcome. The preservation of life is an inalienable right of states and communities, making it essential to take active stances in this regard.

Given the diversity of our continent, it is essential to recognize that people with disabilities experience the highest rates of unemployment, resulting in limited and interrupted employment histories that place them in the informal economy. A significant proportion of people with disabilities in Latin America and the Caribbean live in poverty, resorting to begging or street vending to survive. This makes them particularly vulnerable to the effects of lockdowns, as they are unable to earn a living and are also subjected to increased violence. Furthermore, many are homeless, making it impossible for them to "stay home" as a preventative measure.

In our countries, there are also Indigenous people with disabilities, living in cities, rural areas, and indigenous reserves, villages, and communities, who are potentially at risk of contracting the virus and for whom processes of oppression, racism, monoculturalism, and assimilation into the dominant medical system could be exacerbated. We strongly urge respect for epistemic diversity surrounding disability, from our Global South perspectives, which implies recognizing, valuing, and strengthening counter-hegemonic, intercultural, and decolonial perspectives on the dynamic relationship between health and illness, drawing on ancestral knowledge and practices and the lessons and contributions they can offer to states (national or plurinational).

In Bolivia, the disability community has spoken out because the current government does not include them among the vulnerable groups that will receive a food assistance payment. The parents of children with disabilities are not organized and have also been left without state support given their precarious situation during the total lockdown imposed in that country on March 22nd. This is also happening in Argentina, and we understand that it is happening in all our countries where caregiving is not a recognized right but a feminized task assigned primarily to women/mothers. These situations necessarily lead to discussions about the feminization of care work and the inadequate state response.

People with disabilities and their families who are migrants, victims of forced displacement, or living in situations of armed conflict deserve special attention. Their status as foreigners, outsiders, expelled individuals, and nomads exacerbates their precarious lives, as well as the difficulties and barriers they face in accessing basic services. It is essential to conduct a thorough and careful analysis of the situation of our brothers and sisters with disabilities in Venezuela and Nicaragua.

The formation of family and social networks to guide, support, and facilitate assistance to people with disabilities during quarantine measures is crucial, ensuring they have the necessary permits to move about as established by different governments and states. Regarding family networks, it is also essential to emphasize that protection strategies in this context must include those who provide ongoing care to people with disabilities. Caregivers are as invisible to governments as people with disabilities themselves, and they are made vulnerable because most lack formal employment. Generally speaking, those who provide care are often from impoverished and precarious sectors of the population.

Vulnerability is strongly linked to the prevailing structural inequalities in our continent. Disability intersecting with poverty takes on faces of social suffering that, within the context of the pandemic, exacerbate vulnerability.

We believe that isolation measures and restrictions on movement must guarantee the uninterrupted provision of basic rights related to food, medical care, communication, and education. In this regard, the availability of social support is a right that must be guaranteed to ensure access to dignified living conditions.

In light of the suspension of classes in schools at all levels and educational modalities, the need arises to recognize and implement actions that involve designing pedagogical strategies to enable the education of all children, youth, and adults with disabilities. This entails ensuring accessibility in communication and in the formats of educational platforms and applications for students, families, and teachers with disabilities, having pedagogical support teams, fostering discussions on teaching methods, and, of course, monitoring the well-being of each individual.

It is essential to understand that the measures taken by states to mitigate the effects of the pandemic must be available in accessible, free, and relevant formats. Access to secure, reliable, and trustworthy information cannot be postponed, especially when it directly impacts prevention and the protection of life.

Consider the accessibility of virtual platforms that are used and offered as an option for working from home or teleworking, as well as activities focused on accessibility to enjoy leisure, recreation, expansion and cultural creation, being free or affordable so that people with disabilities can also participate.

We recommend paying special attention to individuals whose health conditions place them at a specific need, such as those with multiple sclerosis, muscular dystrophy, rheumatic diseases, autoimmune diseases, syndromes, spinal cord injuries, and others, who will require ongoing support to facilitate comprehensive rehabilitation. In addition to these recommendations, we advise on proper hygiene practices regarding assistive technologies (canes, crutches, wheelchairs, cochlear implants, etc.).

The concerns raised are primarily related to care practices and their continuity; access to quality goods and services; and healthcare protocols. The demands center on ensuring that all decisions made within the context of the pandemic are based on a rights-based perspective, with particular attention to interdependence and conscious self-determination. How will people with disabilities access the medications and other primary care services necessary to sustain their lives during quarantine? In the event of infection and hospitalization, what are the protocols of official health agencies in our countries' governments for caring for this population? Will they be able to be accompanied by their caregivers, family members, or allies?

In light of complaints made by the Spanish Independent Living Forum and news reports circulating in the media regarding the handling of the pandemic in Europe, we suggest strengthening training on disability and human rights for intensive care physicians. We urge that, in the event of a shortage of ventilators for intensive care during the pandemic, disability not be considered a justification for denying care and potentially causing death. This would constitute a violation of the commitments assumed by Latin American nations through the signing of the Convention, and would also pave the way for the legitimization of neo-eugenic practices that have historically sought to prevent the reproduction of individuals deemed unproductive for the capitalist system, who deviate from aesthetic standards, and so on.

The pandemic highlights that interdependence is fundamental to our subjective experience. No one is safe alone. We urge that this global situation serve as a catalyst for transformations in our precarious political, healthcare, social, and community systems. May these transformations be creative, fostering interdependence, reciprocity, solidarity, and coexistence among all people and with Nature. It will be crucial to prioritize life and its reorganization, ensuring that people with disabilities are not only cared for, but that we also contribute to their care in material and/or emotional terms. This context allows us to reflect on the daily lives of some individuals or groups with disabilities in the absence of a pandemic, to redefine public and virtual spaces, to question productivity, and to consider the power of community.

We, as the CLACSO Working Group, join the struggles of the downtrodden, the forgotten, the excluded, and the marginalized around the world, who raise their voices to denounce how Covid-19 exposes the structures of domination that kill, impoverish, and sicken us. We also listen in unison to the Cry of the Earth, urging us, in this civilizational and geological transition, to remember the power and intrinsic value of all human and non-human life, with and without disabilities. The era is giving birth to a heart, as Silvio sings. We yearn for our hearts to be reborn.

As the CLACSO Working Group and on behalf of our Member Centers and allied institutions, we urge the other academic networks of CLACSO, and especially the Thinking about the Pandemic Observatory, to incorporate the category, approach and critical perspective on disability, in the multiplicity of analyses, actions, dreams and everyday and long-term constructions.

Finally, we call for the recognition of the need to care for the lives of all people without distinction of “race,” gender, age, sexuality, ethnicity, origin, religion or spiritual experience, ideology, or disability, at a time when the virus fuels the rationales that legitimize hierarchy, prioritization, and exclusivity to safeguard some and let others die. Furthermore, we reject any romanticization of mandatory confinement since it ignores the fact that not everyone can choose to be at home with their family and, on the contrary, they are confined as a control measure that denies them the possibility of embodying their freedoms and rights.

March 2020
Workgroup
Critical studies in disability

This statement expresses the position of the Working Group on Critical Disability Studies and not necessarily that of the centers and institutions that make up the CLACSO international network, its Steering Committee or its Executive Secretariat.