Restricted Access To Care In Lockdown Puts People with Disabilities At Risk

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

As India, and the whole world, is now passing through tremendous stress due to the COVID-19 crisis, and the consequent prolonged lockdown, that has affected the lives and livelihoods of millions of people. The most affected are those living below the poverty line, which constitute around 20% of the national population (around 250 million people). Amongst these affected people, the deeply deprived people, constituting around 50 million of the national population, consist of persons with physical disability, vision impairment, hearing/speech impairment, persons with intellectual disability and poor mental health, elderly people in poor health, destitute women and a section of self-employed people with no skill and many more.

According to Census 2011, there are about 26.81 million persons with disabilities, comprising of 56% males and 44% females, with 31% in urban areas and 69% in rural areas, a phenomenon which remains invisible even with them being the largest minority group of the population in India.

While the COVID-19 pandemic has threatened all members of the society, persons with disabilities have been disproportionately impacted due to attitudinal, environmental and institutional barriers that are additionally reproduced in the COVID-19 response, thus, putting them at risk of increased morbidity and mortality, underscoring the urgent need to improve provision of health care for this group. Persons with physical, intellectual, or sensory disabilities are less likely to access health services, and more likely to experience greater health needs, worse outcomes, discrimination and stigma.

While, in India, they define caste, class, gender and other forms of discrimination, structural oppression of disability has largely being ignored. Disability is as political as any other structural oppression. The socio-political angle of understanding and defying disability is overtaken by the idea of ‘charity’ and sympathy for disabled individuals.

People with disabilities, particularly those from economically deprived sections, continue to suffer severe hardships and has been worsened due prolonged lockdown.

Life Of PwDs In The Times Of COVID-19

People with disabilities, particularly those from economically deprived sections, continue to suffer severe hardships, and this has been worsened due prolonged lockdown. Without access to food or money, many are faced with starvation. For some who have migrated in search of employment and better life from their native places, it was even harder.

During an interview for an online survey for digital outreach program for COVID-19 response, I came across a story of person with low vision named Vijay (name changed) who was residing in Greater Noida, originally from Jharkhand. He was employed in an organisation there and was staying on sharing-basis with a colleague on rent. His colleague was from a nearby city and left immediately after the lockdown was announced; meanwhile he lost his job due to lockdown and was unable to pay the rent. Due to this, the landlord started pressurizing him either to pay the rent for March or vacate the room. He did not have enough cash to even fullfil his basic needs and was under extreme stress which was felt during the conversation.

Later on, my team connected him with different NGOs working for the welfare of PwDs who helped him come out of the situation, ensuring him with a safe stay and food until he was able to return to home. There are many such persons with disabilities we came across, who are away from their home and are deeply affected due to the crisis situation. They have lost their only livelihood under organized and unorganized sector during this pandemic.

Person in a wheelchair working on a computer.
Persons with disabilities in institutions face higher risk for contracting COVID-19. Representational image.

The novel coronavirus poses particularly higher risks for the disabled, adding additional barriers to their health care. For many, the suggested ‘frequent hand washing’ involves strenuous exertion and use of hand sanitizers is an additional expense. The directive of ‘physical distancing’ is a double-edged sword for those dependent on caregivers. Caregivers have been unable (and sometimes unwilling) to reach most of them who need their critical support. Many have lost access to vital medical attention and peer support systems due to social distancing and restricted travelling. Thus, social distancing poses a wide challenge for persons with disabilities.

Infected surfaces are a continuous threat to those who depend on tactile perception to navigate through life. And the wearing of masks is not the most conducive for sign language. Moreover, disability became a ground for prurient ridicule and laughter.

During this lockdown, most of the people are active on social media using various applications for the purpose of leisure such as Tik Tok, where it was found that a series of videos were shared among millions across the country about people pretending to be disabled. The videos were not just inappropriate and attempt to poke fun at disability, somewhere also violating rights of PwDs, they were also dangerous as they spread the false narrative and manifestations of disability, which leads to a chain of more discrimination in the society. This, at a time when people with disabilities are already hard hit by the lockdown.

This pandemic, fundamentally, has disrupted human existence and has also immensely led to rising psycho-social and mental health issues for most of the people facing challenges of prolonged lockdown. It is affecting persons with disabilities, aged people, women and children with disabilities disproportionately. A high level of stress due to monotonous routine in this lockdown is arising among people, leading to severe depression and poor mental health, and persons with pre-existing mental health problems and psycho-social disabilities are particularly more disadvantaged during lockdowns.

For persons with mental illness or epilepsy, reduced access to medication can lead to relapse of symptoms, so can be the compounded stress. Persons with disabilities in institutions face higher risk for contracting COVID-19. Interpersonal issues between family members can get triggered in situations of a lockdown. The break in familiar routines and the unavailability of caregivers further aggravate the situation, leading to increased stress levels.

Persons with intellectual and developmental disabilities and aged people, especially, may require assistance in understanding the current crisis and consequent disruptions to their routine lives. Anxiety and change in routine are a big challenge for disabled people, who are used to a routine.

According to the International Disability Alliance, one in five women lives with some form of disability, with an inordinate proportion in developing countries such as India. Majority of women with disabilities are to be found among low-income groups. These women face layers of prejudice that stem from gender, poverty, a lack of education and social prejudice.

Often denied sexual and reproductive rights, they are at greater risk of sexual assault and violence. In fact, incidents of domestic violence appear to be rising in the country during the COVID-19 lockdown. In India, the first signs of the problem appeared in data provided by the National Commission of Women (NCW) in mid-April, which suggested an almost 100% increase in domestic violence during the lockdown.

Similarly, children with disabilities are perhaps the most vulnerable. For many, their almost total dependence on parents or other care givers puts them also at the receiving end of any distress suffered by these guardians. The lockdown has also put them at an unfair disadvantage in the arena of mainstream education. Many children with disabilities are facing problems in accessing education and essential therapies because they do not have access to online services that have replaced traditional learning during this lockdown.

Redesigning The Concept Of The New Normal For PwDs

There is a need for major conceptual shift in the disability theory away from the ‘medical’ model to the ‘social’ model that can stimulate the approaches to the research and understanding of disability as a social and political experience and not just a medical health issue. People with disabilities are merely seen as individuals with flawed body, but their human identity has never been acknowledged by the world of ‘normal people’. This is not only reflected in the failure of our system to recognize people with disabilities, but a collective failure of our societal system where we still live in a binary of ‘Normal’ and ‘Abnormal’.

The department for persons with disabilities came up with an excellent set of guidelines, but left it to the discretion of state and district authorities to act upon them.

Hence, there is a dire need to reach beyond the conventions of ‘normalization’ for persons with disabilities, and also as we are in the midst of this crisis, when we tend to design a neo-normal world post pandemic, we have to have a disability-inclusive response to COVID-19. For this, we need to ensure strong legislation and polices in line with the rights of persons with disabilities, eliminate barriers and improve service deliveries for person with disabilities, improve health coverage as a part of health care and empower persons with disabilities to live a quality life reaching all spheres of well-being.

Need For A New Think Tank For Policies For PwDs

Although COVID-19 is being treated as a national disaster to facilitate a uniform and coordinated response, the overall response of the central and state governments was almost as diverse as disabilities. Various states announced various measures for relief and mitigation, as did the central government. None of these announcements were made in accessible formats, and many of them remained mere announcement. There is a general lack of accessible information around COVD-19. Most people have not been able to not been able to access helplines.

Moreover, there is no dedicated helpline for persons with disabilities, which makes it harder for them. This was also reflected during my survey for digital outreach program for COVID-19 response. The department for persons with disabilities came up with an excellent set of guidelines, but left it to the discretion of state and district authorities to act upon them.

Even in pre-COVID times, persons with disabilities living in desperate conditions, without knowing as to where their next meal would come from, survived due to the freebies such as free ration and welfare pension schemes. Without such freebies and pension support from the government, most of these people would have lost their lives due to poverty and sickness. During this lockdown, the central government decided to give three months pension in advance under the National Social Assistance Program (NSAP) to the poor, senior citizens, widows and persons with disabilities.

Sharing about an experience of a person with physical disability Ajay (name changed), age 27 years, and a graduate from a remote tribal village of Jharkhand when he told me during a conversation:

“For us, the lack of government support and people’s attention towards our issues is making us feel as a second-class citizen in our own homeland. I am dependent on a caregiver for my daily needs, but there has been no acknowledgement of how we are living our lives. It has been more than four months since I have got a pension, and in this lockdown, it has become already difficult to meet my daily needs without a job.”

Though during the COVID-19 crisis, central and state governments, non-government organisations, CSRs, voluntary bodies and kind-hearted individuals have been doing their level best to support these deeply deprived 50 million people all over India by extending support in various forms, still a shift in strategy at a policy level is needed to overcome the issues for persons with disabilities in fast track mode. This may include: support solutions that promote equality; ensure communication is accessible and disability-inclusive; ensure labour rights; provide adequate social protection and change the narrative to bring the needed paradigm shift.

Disability Road Map: The Way Forward

The COVID-19 crisis is new; and as they say, every crisis is an opportunity. In this sense, COVID-19 crisis is an opportunity to understand, reflect and re-define disability according to their perspective and keeping in mind the socio-economic and political model associated with it. Thus to advance social justice and making meaningfully inclusive communities for persons with disabilities post pandemic, we need to be bold. We need to be innovative. We need to act together during the COVID-19 crisis and beyond.

So, our COVID-19 mitigation strategies must be inclusive to ensure they maintain respect for “dignity, human rights, fundamental freedoms, equality of opportunities, decent work and avoid widening existing disparities”. This necessitates accelerating efforts to include these groups in preparedness and response planning, and requires diligence, creativity, and innovative thinking, thus ensure people living with disabilities are not forgotten. We have to stand in solidarity in the face of this crisis with each and every one.

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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.

Read more about her campaign. 

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.

Find out more about the campaign here.

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.

Read more about the campaign here.

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.

Read more about the campaign here.

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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