COVID-19 Has Further Marginalised People With Disabilities

This post is a part of YKA’s dedicated coverage of the novel coronavirus outbreak and aims to present factual, reliable information. Read more.

By Srilakshmi Bellamkonda

Since the beginning of the year, more than 200 nations across the globe have been affected by COVID-19. Many are still reeling under the devastating effects of the pandemic, with both public health and the global economy has taken a major blow. Emerging markets seem to be especially vulnerable, given that their healthcare facilities tend to be ill-equipped to tackle a pandemic of this nature and scale. Worse, and even more worrying, is the fact that the end to this global crisis is still nowhere in sight, and we have not been able to assess the damage to lives and livelihoods.

Despite governments having taken drastic steps, including offering varying degrees of support to their citizens, there remain certain sections of society that have been inadvertently excluded. Persons with disabilities (PwDs)—more than one billion in number globally—are one such group. This is because much of the advocacy on how to stay safe during the pandemic has not factored in the inability of people who are immobile or living with mental illnesses to follow these instructions.

Containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress, and bathe.1 The World Health Organization (WHO) issued a document highlighting this issue, and explaining how PwDs may be at a greater risk of contracting COVID-19. Some of these include:

  • Accessibility issues may limit how often PwDs are able to wash their hands
  • PwDs who require additional support may find it difficult to practice physical distancing, and many caregivers may be reluctant to provide their services due to the contagious nature of the novel coronavirus
  • People with intellectual impairments cannot be expected to cope with self-isolation
  • People with visual disabilities rely on “touch functions for mobility and work”, thereby increasing their risk of infection
  • Public health information remains inaccessible, which acts as a barrier, particularly for people with hearing impairments
  • PwDs may be at greater risk, as people with underlying health conditions, particularly those related to respiratory function, immune system function, heart disease, or diabetes, are more likely to be infected with COVID-19

In India, The Government Needs To Be More Proactive

The situation is no different in India, where 2.21% of the population, or 2.68 crore people, are officially recognised as PwDs. Here, some of the challenges highlighted above may be intensified, due to ignorance and poverty, or the lack of a conducive environment and amenities.

The Department of Empowerment of Persons with Disabilities (DEPWD) recognises that PwDs are more vulnerable to the virus because of their physical, sensory, and cognitive limitations. These limitations come in the way of their capacity to access, interpret, and use the information and services being made available to deal with COVID-19, and can lead to further marginalisation. The Ministry of Social Justice and Empowerment has also mandated that under the Rights of Persons with Disabilities Act, 2016, departments in the states and union territories should disseminate information on COVID-19 in audio formats and Braille, while also ensuring that the government websites are accessible.

While these guidelines are welcome, their actual implementation requires long-term preparedness and mass awareness, backed by a multi-pronged approach. A recent study indicates that little progress has been made in implementing these guidelines, leaving people who are differently-abled to rely on second-hand information, which at times could be diluted and/or misinterpreted and misleading.

Lack of captions and sign language communication in media coverage further exclude people with hearing impairments. Moreover, those with inaccessibility or people with hearing dysfunction, who depend on lip-reading, are unable to communicate with doctors and health workers in this time of crisis.

“While these guidelines are welcome, their actual implementation requires long-term preparedness and mass awareness, backed by a multi-pronged approach.”

Another challenge is accessing ration supplies and cooked food distributed by the authorities or organisations, since the mobility to the place of distribution is tedious, and additional infrastructural support at the distribution point is often limited. This lacklustre response is indicative of how we, as a society, have a long way to go in being sensitive to the needs of PwDs.

In Australia, to cite one example, a separate, exclusive shopping time slot is allocated for PwDs at grocery stores to ensure they have access in line with their needs. Another major blow for PwDs by the pandemic is to their livelihood and income generation. Two out of three PwDs in India today are unemployed, and a majority of the rest work in the unorganised sector as migrant or contractual labour—the group that has been most severely impacted by job losses due to the lockdown. Loss of income is among the main reasons why PwDs are being driven to the brink of poverty and exclusion.

“Containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress, and bathe.” | Picture courtesy: Dr Reddy’s Foundation

What Needs To Change?

In a letter to the Prime Minister, Mr Arman Ali, Executive Director, National Centre for Promotion of Employment for Disabled People (NCPEDP) demanded uniformity of pensions, increase in ex-gratia payments, the announcement of an adequate economic package, the information in accessible formats, and the enforcement of comprehensive, strict guidelines for the protection and safety of PwDs.

The state disability commissioners are nodal authorities assigned to coordinate with other relevant bodies. But since these positions are ad hoc in nature with no independence to plan and execute, there is little or no motivation to do what is necessary. This apathy points to the urgent need to establish an exclusive centralised statutory body, similar to what other vulnerable sections have in place, such as the National Commission for Minorities and the National Commission for Women.

The urgency to address this cannot be overemphasised. We are already late in addressing the trauma and the inconvenience experienced by PwDs, and this needs to be alleviated with concerted and quick action. Some of these steps include:

  • The Aarogya Setu app should include dedicated sections with specific information for PwDs and the information should be available in sign language
  • Door-step delivery of food or rations should be ensured for free or at affordable rates
  • Direct cash assistance can be provided, along with special provisions under the public distribution system (PDS) for PwDs
  • Conversion of public materials into the ‘easy read’ format so that they are accessible to people living with intellectual disabilities or cognitive impairment
  • Providing financial compensation for families and caregivers who need to be self-isolated and are prone to infection
  • Setting up exclusive helplines in multiple formats (for example, telephone and e-mail) for PwDs to communicate with the government, ask questions, and raise concerns
  • Considering caregivers as essential workers, providing them with curfew passes, and exempting them from other lockdown measures that may affect the continued provision of support services
  • Ensuring the adequate provision of facilities at quarantine centres and provision of transportation to and from the centres

While these are times when everyone needs to take good care of themselves and interact with others with caution, this is also the time for society to be aware of the needs of PwDs, and to ensure we do not forget those in need of assistance, support, and understanding.

Given the lockdown and the loss of livelihoods, the onus rests on the legislative and administrative agencies to address these gaps and to ensure the inclusion of PwDs, both in letter and spirit.

Footnotes
  1. Human rights expert, Catalina Devandas

Disclaimer: Dr Reddy’s Foundation supports IDR for research and dissemination of underserved themes in the social sector.

This article was originally published on India Development Review.

About the author: Srilakshmi Bellamkonda heads the skill development initiative for people with disabilities (PwDs) at Dr Reddy’s Foundation. She is instrumental in designing and driving livelihoods programmes for PwDs within the organisation.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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