A Rendering of Disability and Gender in the COVID-19 Era

Discourses on COVID-19 must be inclusive of “disabled bodies.” This requires a radical change in the way discourses around gender, disability and pandemics are constructed. It requires us to question philosophies of liberalism and enlightenment (that continue to dominate policymaking and governance). They emphasise on dignity as capacity to reason, and thus, are “ableist” and patriarchal in their approach. Persons with disabilities (particularly women) are seen as unproductive, thus excluded from liberal political states that were primarily based on values of mutual interest/advantage ensured by contractual relations. Thus, a case is made for a more inclusive politics. It argues for a politics that is based on existential concerns of women with disabilities towards a politics that embraces gender and identity fluidity to build a society based on ethics of inclusion and universal solidarity.

 

In India, ignorance of disability from the mainstream arena of academia creates and maintains a status quo where the “disabled” is incorporated with the existing social patterns (as special), while judging the normative hegemony. An understanding of disability therefore is trapped in a concessional category. Consequently, knowledge construction of disability in my understanding edifies the lived realities of individuals who are designated as “disabled.” The politics of knowledge creation is a serious dimension in understanding the structures of control and exclusion. Disability studies therefore can enable academia to think critically not only about disability, but also about oppressions that affect all historically marginalised groups. Understanding disability for the right discourse is the subject matter of epistemology which is not simply the differences that exist in human behaviour, appearance, functioning, and the sensory and cognitive, but, more importantly, the meaning we derive out of those differences. It is only when we create intersections that we assess gaps, which places limits on human beings, both disabled, and non-disabled. On 11 March, the World Health Organization (WHO) declared the COVID-19 outbreak as a global pandemic. India too declared COVID-19 as a “notified disaster.” However, in such notifications, disability is excluded both from centre and state endeavours. The present paper is to underscore the devastating impact of COVID-19 on people with disabilities.

The genesis of the pandemic reflects not only the pain and anguish of disabled lives, but also the resistance to the oppression inherent in living with a label, which evokes and attaches a negative value to lack, deficit as well as difference. An underpinning of Enlightenment is liberal ideology wherein the dialectical understanding of rights was used to secure the autonomies of individual citizens against the idiosyncratic power of the state.  Rights are the apparatuses to secure freedom for the marginalised whose independence is again obstructed with the sanctions and an advancement of sovereignties. But as a disabled, feminist, we have to ask the question sovereignty for whom? Rights have had an ambivalent relationship to the struggles of fraught and disregarded groups for “liberal” democracy in India. Despite India’s explicit attention to diversity, liberal principles such as rights have been used to erase difference, in that only some constituencies such as women, minority groups such as Muslims, migrants, and Scheduled Castes/Scheduled Tribes, are understood as well-intentioned and protected as they are considered as vote banks by the state. In liberal societies, such claims are filtered through the discourse of universal human rights and as Wendy Brown (1995: 58) argues,

“In this story, the always imminent but increasingly politically manifest failure of liberal universalism to be universal—the transparent fiction of state universality—combines with the increasing individuation of social subjects through capitalist disinterments and disciplinary productions. Together, they breed the emergence of politicised identity rooted in disciplinary productions but oriented by liberal discourse toward protest against exclusion from a discursive formation of universal justice.” 

Feminism and Persons with Disabilities

It is ironic that feminists involved with the issue of difference are interconnected in their challenges to empower the powerless and determined to transform societal disparities, but have not focussed on the adversities related to disability and impairment for women with disabilities. 

“While the disability movement’s failure to acknowledge disabled women can be fathomed as reflecting the patriarchal character of a society it accepts and aims to be included in at least within India, its disregard by the feminist movement, which claims objectivity through its theoretical deconstruction of oppressive social suppositions, is less understandable.”(Ghai 2002: 56)

What is especially anguishing is that Indian feminist thought fails to recognise that the problematisation of women’s issues applies to women who might have benefited from the activities of certain women’s groups, but no documentation exists of specific instances. Thus, the lived reality of the disabled, both men and women, is that they experience indignity, shame and loss. While both are constituted as being the “other,” their disability is symbolically considered a bundle of “lack,” “tragedy,” “loss,” “dependency,” and “deviation.” They are considered inferior and incapable of autonomous existence. The experience of disability in pandemic transcends fault lines of the pandemic in the form of gender, class, caste and myriad other identities. The “virus” thus is reintegrating the normative culture during the pandemic by underscoring the existential anxieties about difference of any kind, be it caste, class, gender, or disability. Such a scenario exacerbates a creation of a living reality of acute marginalisation, discrimination and stigmatisation. The discontent that situates disability as the sole preoccupation of persons with disabilities, specifically women, does not matter to the state. The COVID-19 pandemic is an inimitable amalgamation of both an unparalleled health crisis and a fiscal crisis and has been called “a disaster for feminism” (Lewis 2020), as heightened care obligations within the pandemic context negatively affect many women’s financial and employment security and  “the lived realities of women with disabilities are impacted by the sociocultural context of disability, including inescapable inequity and typecasting by patriarchy and normative hegemony.” 

I submit that the concerns of disabled women strike at the core of both the disability rights and feminist movements. In our own understanding, women with disabilities too, like the women without disabilities, can occupy multiple positions that are taken as responses to the kind of domination that is experienced most critically. 

Women with Disabilities and the Pandemic

Both, women with and without disabilities, embody a complex of interlocking situations. However, women with disabilities do face serious problems during the pandemic. Women are more likely to be oppressed than men, as they are at a heightened risk of poverty, insecurity and financial constraints along with domestic violence. Thus, the intensity of vulnerability increases when both men and women with disabilities experience disasters. Such a scenario reminds me of Tobin Siebers (2008: 58) who  used  Foucault’s example of the premodern soldier to interrogate the difference between the “disabled body” and the “docile body.” Thus, the ideal of the soldier in the 17th century is easily recognisable in body and action. The body is therefore the centre of power. However, the docile body in the pandemic is endangered, cast off, converted and improved.

In a pandemic, docility thereby epitomised a new scale of control. Since we do not confront the disabled body even in a pandemic, we fail to see the contours of the docile body, which replaces the able body. As Foucault (1977: 138–39) puts it, what was then being formed was a policy of coercions that act on the body, a calculated manipulation of its elements, its gestures, and its behaviour. The human body was entering a machinery of power that explores it, breaks it down and rearranges it, thus discipline produces subject and practiced bodies, “docile” bodies. The docile body in other words is a disabled body that requires support and constraints, its every movement based on a calculation. Thus,  the docile/disabled body in this pandemic is to be understood as treacherous and unsafe. Its surveillance of able and disabled bodies is an attempt to help them fight the COVID-19 outbreak.
                                     
One of the strictest lockdowns in the world was imposed in India. With the movement of individuals restricted, the persons with disabilities were dealt a huge blow with their access to their personal caretakers completely cut off.  For almost a week, many of us were baffled and sensed that living is going to be unbearable. One such experience quoted in the Rising Flame and Sightsavers Report (2020) was by a 39-year-old woman with locomotor disability from Ahmednagar, Maharashtra: “I had gone to buy some ration, and there my crutches slipped and I fell down. In normal times, someone definitely used to come to pick me up if this sort of a thing happened. But that day, no one came. Then when I took out my sanitizer from my purse and gave it to the shopkeeper, that is when he came to help me get up.”  

Countless examples indicate that a caring relationship—regardless of gender identity—is knotty. I recall Julia Twigg’s work on older people’s experiences of being given a bath. What she says is enlightening: “One person, strong and able, stands above and over another who is frail and physically vulnerable, forced to rely on their strength and goodwill. Being naked in the face of someone who not contains a powerful dynamic of domination and vulnerability, and it is often used in situations of interrogation and torture as a means of subjugating the individual” (Twigg 2000). 

Thus, in the pandemic, even if dependency is recognised as an essential part of the human condition, the present circumstances should not obfuscate the fact that it places disabled bodies at a much greater risk of losing their dignity and self-esteem. A report by Rising Flame and Sightsavers (2020) indicates that 75 out of the 82 women who participated in the study had struggled with accessing either information, accessing physical spaces, communication, digital spaces, health services, food and other essentials. Similarly, in an NCDEP report and a report of WHO Southeast Asia Region,1 two major findings were about medical treatment and rations coupled with medicines. The findings indicated that class played a critical role. Further, battery-operated assistive devices went dead for many persons with disabilities, especially those with hearing and mobility impairments. Many persons with multiple disabilities had innumerable difficulties as touchpads and other communication devices could not be repaired.

Accessibility of Healthcare for Persons with Disabilities

The reports discuss the trouble of mobility and the fears attached to it even as the lockdown lifts. Just as a broken leg is a medical matter and the moving around of a person with a broken leg is both a medical and a political matter, impairment, in general, is often both a brute fact and an institutional fact. However, Treiman (2002) argued that impairment and its materiality are naturalised effects of disciplinary knowledge/power. According to Treiman (2002)

“because much of the work in disability has assumed a realist ontology, impairment has for the most part circulated in disability discourse as some objective, transcultural and trans historical entity which biomedicine accurately represents.”

The most blatant limitation has been the realisation that some of India’s largest public hospitals that function with an ableist gaze have remained inaccessible to people with disabilities during the pandemic. As Madhu Singhal, a managing trustee of Mitra Jyothi—an NGO working with persons with disabilities in Bengaluru says, “Many cases came to our notice, in which COVID-19 patients with disability suffered due to lack of infrastructure.” Further, the harsh reality was that “no toilet facilities were available for them.” Coupled with the infrastructural inadequacies, the patients with disabilities were not being attended to properly because they required assisting hands for simple things. The novel set of norms of social distancing kept hospital workers away from patients with disabilities who were otherwise regularly physically assisted.

Social Distancing and Persons with Disabilities

It is very difficult for a visually impaired woman to maintain social distancing in public transport. There was an apprehension that they would not be able to access seats reserved for disabled people on a full bus and she would have had to wait a long time for a reasonably empty bus. Taking a metro created further barriers, as its tactile paths were less than accessible. Normally, an attendant is provided but the risk of contracting the virus kept providers away. Shakespeare argued that people without disabilities “project their fear of death, their unease at their physicality and mortality onto disabled people, who represent all these difficult aspects of human existence” (Shakespeare 1994). The invalidation has both psychological and ontological dimensions. As Hughes writes, “the first is fear of physical frailty, bodily difference and social vulnerability that is projected onto the disabled other and the second is the process by which social distancing associated with projected fear is frozen into a binary of being that embodies a hierarchy of existence” (Hughes 2007). Ironically, the ontological insecurity of a non-disabled identity is the original sin that pushes people with disabilities to the margins of the human community. For instance, masks as protection become complicated as a 31-year-old woman from Mumbai said, “If they are wearing a mask and saying something, it will be much more difficult to hear for me. I will need an interpreter; I will not be independent as I will have to depend on somebody for communication.”

While social distancing, masks and frequent hand washing are critical safety measures, people with disabilities are in a difficult position with reference to protection. The heterogeneity of disability is not understood as knowledge construction of disability is always ignored. As the lockdown has been lifted, some restoration might happen. What is critical is that the built environments have no understanding of bodily multiplicity, thereby producing “standard-fit” designs. The everyday reality of universal access physical, psychological, communication and attitudinal barriers, which thwart their effortlessness of mobility and access is not comprehensible. If accessible public transport remains a fantasy, to think of friendly pavements is an exception rather than a rule. For instance, the inability to access information hits the deaf community the hardest, as they are always kept in the dark, due to lack of awareness about their communication needs, especially since such little content is available in sign language in India. The dignitaries of different countries use a sign language interpreter but India continues to have a half-baked approach. Alim Chandani, a deaf activist, shares about the struggles that deaf Indians are facing during this pandemic, “Accessibility through media channels, helplines, the lack of English captioning and quality interpreters (is a challenge). COVID-19 helplines are not accessible to the deaf and only very few centres are providing interpretation services.” Along with this, Chandani also adds that communication for people who are deaf will now become difficult with the mandatory use of masks, “It would become double the effort for us (the deaf community) to get access due to the blockage of facial expressions or inability to read lips.” 
 
The Government of India has made Arogya Setu2 app mandatory for government employees to enter their office building, but it is not easily accessible for the visually impaired since it lacks features like screen reader, voice-over and talk back (Mani 2020).  Thus, navigating the city is not an easy endeavour. Access to disability-friendly information can therefore be the difference between life and death. Thus, autonomy is the ability to have power over one's life. Hyderabad-based G Sunitha, 37, a housekeeper had to resign when public transport stopped during lockdown. “My husband is disabled as well and doesn't have work now, my father too passed away recently. We've had difficulties getting food and we had to leave our house because we couldn't pay rent.” Although Sunitha receives some subsidised food, she is yet to receive the monthly disability pension of Rs 300. She had to re-apply for the provision but there have been administrative delays due to the lockdown. While she waits, she struggles to pay for basic necessities and her daughter's education. 

The Digital Divide

In a country as vast as ours, accessibility to information and communication technologies is not consistent. For some of us, access to the internet enables better connection but internet connection in rural/slum areas can be poor or limited. Praveen Kumar G, a visually impaired person in Delhi laments, “For a blind person, isolation becomes even more of a challenge owing to dependence on others. Ration shops are difficult to access. E-commerce platforms are not accessible with screen readers. Tactile communication and navigation is inevitable, making self-isolation more challenging. This digital divide impacts not only access to apt information but, more critically, access to education. Though technology can be a boon for the disabled, the required infrastructure is absent.

There is a digital divide among persons with disabilities. Those who are tech-savvy and have resources can still access education online, but others who have gone to government schools and studied through the Braille system will find it difficult to adapt to these changes.” A master of arts student who has cerebral palsy, finds online classes difficult to follow. There are days that she does not understand much of what goes on in her e-classroom and has to mostly rely on her classmates' notes for studying. Similarly, a 20-year old deaf and blind college student from Delhi reported in the study: “No special assistance, no captions or text are shared. Most of the assignments are PDFs scanned and sent which mean someone needs to read out to me.” This further alienated her from education and learning. Even when employed, Hasija, who is deaf, was interrogated by the police as her deaf friend drove her to the bank. Notwithstanding her travel authorisation documents, the police did not budge. She was made to walk the entire 8 kilometres to reach her bank, so the next time, she got her nephew, who can hear, to speak on her behalf which sorted everything, she said. Once again, a man with hearing ability could accomplish what two deaf women could not. The demarcation between an able-bodied and a person with disability is far more significant here.

Social Capital, Violence and Persons with Disabilities

Social capital is the effective functioning of social groups through interpersonal relationships, a shared sense of identity, a collective understanding, shared norms, shared values, trust, cooperation, and mutuality. There is an indication that social capital frameworks will be critical for disabled women. Generating justifiable communities requires the acceptance of diversity and difference. A society cannot be workable unless it includes all of its citizens. In neo-liberal times, individualism does not build kinship and inclusive community, specifically in COVID-19. The financial assistance for persons with disabilities, provided by both the central government3 and the states is unsatisfactory. Half the persons with disabilities do not have a disability certificate; they cannot avail benefits of government schemes. The questions of selfhood and identity do not come easily to those who accrue no social security and other benefits or receive such minimal amounts that leave them below subsistence levels, hardly—and not always—able to survive.

The violence against women with disabilities is an alarming issue since different reports indicate that disabled women tend to be economically dependent and socially isolated. For instance, a 12-year-old girl4 with speech and hearing impairments was kidnapped on 16 October 2020 and her body was found on the next day. The incident happened at a village in Banaskantha district of Gujarat. Her body was found in a field with her throat slit. The police started probing the angle of sexual violence. In a similar case in August, a 10-year-old deaf girl was kidnapped in Hodal near Palwal of Haryana. It was found that she was raped and murdered and her mutilated body was recovered from the fields. Notwithstanding the importance of data on violence against women with disabilites, the reality of disability includes “experience of fear of violence” in a patriarchal society. For a body that does not “measure up” to societal norms, the situation becomes precariously balanced. The denial of women’s “traditional roles” to women with disabilities creates “despondency,” a social invisibility and denial of femininity, that forces them to pursue the female identity—valorised by culture but denied to her—more forcefully. Thus, violence both within families as well as outside is evident in COVID-19, as women have lost their jobs and are dependent on parents or other caretakers. A thorough exploration of the violence tied to gender and disability is inevitable in social and political discourse.

A Journey for Transformation 

The relationship between the centre and state is critical. While a lot of policy stipulations are in place, the implementation is problematic. In the midst of the crisis what has been heartening is to know that some of the states have not excluded people with disabilities. Kerala, for instance, prepared lists of persons with disabilities at the municipal/panchayat ward level. Such a meticulous approach enabled the disabled to get cooked food,5 advance pension payments, financial support, smartphones and internet packages to students with disabilities during this pandemic, unlike other states which continue to struggle to reach out to persons with disabilities with aid packages. The National Association for the Blind (NAB), Delhi continued online education of blind students who were sent home due to lockdown. This was possible as NAB provided all blind students with laptops and additionally NAB also provided internet packages to their students to enable them access online education. Nagaland conducted daily briefing as well as a daily video briefing on COVID-19 status with the help of Indian sign language interpreters. The state also had a helpline on WhatsApp and managed to send essential food supplies/dry rations to the doorsteps of persons with disabilities. Like Nagaland, Tamil Nadu and Assam too launched a helpline for persons with disabilities and responded to deaf persons through sign language interpreters. The Tamil Nadu state government made sure that delivery of goods from public distribution system rations shops was done at the doorstep of persons with disabilities. Many states such as Karnataka, Delhi, and Chhattisgarh issued e-passes for the caregivers.  Some states such as Tamil Nadu and Guwahati were concerned about the health care and emotional distress. The former initiated doorstep medical service for fixing/changing catheters and personal physical therapy, while the latter offered online counseling services. Project Mumbai too has been providing counselling service (in eight languages) for parents of children with disabilities to cope with COVID-19 related stress. Tamil Nadu, Kerala, Jammu and Kashmir, Himachal Pradesh and Delhi were proactive in disability pension disbursements. Each state had different distribution schemes, but they made it possible for the persons with disabilities to get advance pension. Himachal Pradesh, for instance, gave pension as well, free ration as for below poverty line cardholders.  

Legal issues have been raised by students with disabilities. A recent judgment of the Delhi High Court on ensuring inclusive measures during online examinations to the University of Delhi is a welcome step. Such attempts can only be a minuscule interjection in the struggle to address serious concerns of the lived realities of men and women with disabilities.

As bell hooks reminds us, the triumph of colonialism does not require the assumption of power in someone else’s country. “Rather colonisation can be accomplished by heavy-handed and normative hegemonies through socio-economic apartheid” (hooks 1995). Perhaps the greatest confrontation is to comprehend that we have consciously or unconsciously oppressed the disabled. Unless we can confront the failure of the privileged and the powerful groups, a fair world will not be possible. We need to find answers to more fundamental questions such as the meaning of humanity while, at the same time, safeguarding against cynicism. While hope might be a gifted liar, I believe that hope is all that we have. 

 

 

A version of this paper was first presented at the webinar series on Gender Equity and COVID-19 organised by the Women’s Development Cell, University of Mumbai in association with Bunts Sangha’s S M Shetty College of Science, Commerce and Management Studies on 15 July, 2020. The webinar series was conceptualised by Gita Chadha and Meher Bhoot.

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