This section collates recent developments impacting the health sector in India.
Many persons with disabilities do not have equal access to health care, education, and work prospects, which are necessary disability-related services, thus excluding them from daily living activities. Disability is a public health, human rights, and development issue as people with disabilities face inequalities, are subjected to violation of dignity, physical and mental abuse, and are denied autonomy. It also has a causal relationship with poverty. Disability increases the risk of poverty, in turn, poverty increases the risk of disability. Although people are subjected to discrimination based on their disabilities, women with disabilities (WwD) are doubly marginalized because of the combined discrimination they face based on their gender and disabilities.
A global human rights survey by Women Enabled International in March -April 2020 revealed that COVID-19-related lockdowns and measures led to gaps in access to health care facilities and support, food, and hygiene items. In addition, it increased the risk of violence, loss of employment and exacerbated the prevailing lack of social protection for women with disabilities. The study stated that many actors were discussing how to include women and persons with disabilities in the COVID-19 response, but few were considering the unique experiences of women with disabilities and others living at the intersection of gender and disability.
India continued to work on establishing a reliable COVID response system throughout the pandemic. Digital solutions received a lot of attention which were designed considering various sets of citizens like the general public, employees, businessmen, pensioners etc, however, it failed to include the persons with disabilities and women with impairments. The response mechanism wasn't specifically planned with a focus on gender and disability. During the first 21 days of lockdown in March 2020, not much attention was paid to the people with disabilities who depended on others for survival. Caretakers and attendants were unable to care for those dependent on them. When India rolled out the first phase of vaccination, it prioritized different sections of the population for immunization based on their vulnerability and level of risk exposure, however, the challenges faced by the people with disabilities were not paid attention to even in the later stages of the vaccination. The COVID communication strategy also didn’t include any dedicated plans for people with impairments which otherwise would have required different communication materials and media on the basis of the type of impairment. For example, a person with hearing impairment would have required awareness messages or sessions in gesture language, and reaching out to women with mobility impairment would have required a different strategy altogether. All this mirrors how we as a society view people with disability; as they are frequently left out of societal decision-making. Policymakers too tend to overlook them when constructing a policy for the citizens. They are first rendered invisible by society and as a result, are left unnoticed and unheard in policymaking. This results in the creation and execution of policies for people with disability that falls short of appropriate representation and therefore lacking equity.
The Social Model of Disability
The disabled people’s movement has identified the role of physical and social barriers in disability. In his book ‘Politics of Disablement’, Michael Oliver describes the transition from an individual, medical perspective to a structural, social perspective as the shift from a “medical model” to a “social model” in which people are viewed as being disabled by society rather than by their bodies. WHO’s international classification of functioning, disability, and health defines disability not only as a feature of health but also as a function of features of the environment in which people live. It categorizes the problems with human functioning into three interconnected areas: impairments, activity limitations, and participation restrictions.
Women in general are at the epicenter of socio-economic vulnerability. On an intersectional approach challenges faced by women with disabilities are multi-pronged. They are considered unproductive and dependent resulting in depriving them of basic necessities such as nutrition, education, and health. They are at the bottom of the employment pyramid, making them easier prey to unprecedented calamities.
Shanta Memorial Rehabilitation Centre (SMRC) is a leading voluntary organization working in the field of disability for the last two decades. It works for developing a sustainable organization that responds to the rights of people with disabilities in India, particularly gendered and in rural areas, through research, education, and awareness. It stresses the need for entrepreneurship among women with disability and community action for policy advocacy. Integrating people with disabilities to their homes and communities for a happy and productive life is the core belief of the organization, its mission is to create an environment where such people can enjoy equal rights. SMRC believes that this can only be achieved through social action for which it has adopted the approach of collective action through capacity building of the disabled women and sensitization of the communities.
SMRC was set up in 1985 by Ashok Hans who was paralyzed as a result of a spinal injury suffered in a road accident. At that time there were no spinal injury centers in Eastern India due to which he was unable to get adequate and timely treatment and was forced to live with the disability. Given his disability, he could not find a job. Mr. Ashok Hans then thought of an organization that could rehabilitate disadvantaged spinal injury victims and give voice to the disabled for their rights and equality. Prof. Asha Hans who is currently its executive vice president, talks about the definition of disability and how shifting it to the social approach from the medical approach can help in reimagining the efforts and measures towards establishing an independent and productive life for the people with disabilities. The factors of social disabilities need to be recognized first. Prof. Hans says “the medical approach has to be given up and efforts to be directed on removing the social barriers and disability will go away.”
Pandemic, Gender & Social Norms
When asked how the impact of COVID-19 was felt locally by these women, Prof. Hans responded that the first lockdown was harder for the women with disabilities (WwD) because the entire country was shut down at the time, making it difficult for such women to ask for assistance and for people and organizations like SMRC to get in touch with these women. The first wave of the pandemic witnessed the rise in the use of mobile phones and the internet all over the world for accessing all sorts of services by people of all classes and age groups only leaving the disabled behind as the ownership of mobile phones was low among disabled women. According to the GSMA - The Mobile Disability Gap 2020 report, the mobile ownership gap between the disabled and non-disabled in India stands at 23 percent. Mobile phones became the primary medium of communication and information sharing during the pandemic, however, there was no specific focus on catering to the needs of women with disabilities who don’t own a mobile phone or are unable to operate one, given their disabilities e.g., blindness, speech impairment, etc. According to the GSMA report, in countries where the gender gap is remarkably large, being a woman is a higher determinant factor of mobile ownership than disability and the lack of inclusive design of infrastructures and physical services is an additional barrier. This posed a higher risk to food security, challenges to health and well-being, and access to healthcare facilities among these women.
In the first wave of the pandemic, the government concentrated on providing the vulnerable population with essential supplies, primarily food, as it was the biggest challenge during the complete lockdown period. While the government attempted to provide food, medicines, sanitizers, etc. during the second phase of the pandemic, the distribution of sanitary napkins was not considered as an essential supply. During the lockdown, access to sexual and reproductive health services and goods was not the main concern. Society doesn’t recognize the sexuality of women with disabilities, therefore, on the one hand, it is assumed that access to products and services of sexual and reproductive health is not required by them but on the other hand families and guardians of disabled women prefer sterilization of the women in order to avoid their sexual behavior. This suppresses their sexuality. The organizations that work with such women, however, do not agree with this assumption. They feel that disabled women are prominently missing from the focus of sexual and reproductive health rights, and there exists a high unmet need for contraceptives for these women. By being physically challenged they also become easy prey to sexual abuse in many situations. This has a psychological effect on them leading to extreme insecurity and concern in everyday situations of life.
Almost all research on people with disabilities has assumed the irrelevance of gender as well as other social dimensions such as social class, race, ethnicity, and sexual orientation. Disability studies have traditionally used a gender-blind approach to examine the lives of people with disabilities and have neglected to explore the influence of gender in the lives of men and women with disabilities.
Culturally mothers are seen as the sole caretakers of their children, but a WwD is considered dependent herself and is questioned on her capabilities of nurturing children. The widespread belief that women with disabilities cannot and should not bear and raise children has made it difficult for pregnant women with disabilities to find doctors who will accept them. The cascading effect leads to a false belief that the disability makes them unfit to be mothers.
To nurture children, mothers require access to primary health centers and Aanganwadis; when accessibility to these centers is limited, even for non-disabled, this becomes a major barrier to accessing affordable healthcare for WwDs. These community centers also lack facilities that can accommodate and facilitate mothers with special needs. Building inclusive centers is important to create holistic community welfare.
While the pandemic in general exaggerated the vulnerabilities of WwDs, the turmoil of families nurturing people with special needs remained unvoiced. Challenges like emotional and physical abuse faced by women with disabilities during the lockdown have not been studied and need to be discussed. These women remained at greater risk due to their further marginalization, inability to contact local advocates, and lack of familial support. While some private donors and NGOs worked with WwDs in helping them access food, medicines, sanitizers, masks, and sanitary napkins; throughout the pandemic, there was no strategic prioritization of these women in the government planning and schemes. The lack of an appropriate medium to access information resulted in uncertainties around the situation and anxiety for many. The government’s reliance on technology further added to issues of access as these technological solutions were not designed with the intent to be inclusive. Lack of prioritization around accessible and affordable treatment and vaccination made them an easy target. Drawing out more details into the after-effects of the pandemic that still lingers on in their everyday lives also needs urgent attention.
Social barriers are critical for placing these women at the center of discrimination and disadvantage, they become easy victims of the structural challenges of society right from their childhood. As Prof Hans said “It was not their fear, it was the community hiding them and even now this is the case”. The fault lies in the social structures that bar such women from coming out and make them invisible. The same problem that - all women face in a patriarchal society, the social norms and stigmas end up influencing the policymakers and get reflected in the formulation of a policy. It affects the outlook and functioning of the administration, for example, the mechanism of self-help groups is mostly non-inclusive of the needs of WwDs. Similarly, a strong affinity to such norms widens the accessibility gap between WwDs in rural and urban areas, it makes it difficult for such women to access opportunities for jobs and education. The focus should be on instilling inclusivity and opportunity for all amongst the general population and hiring authority. Building Policy support to incentivize and promote the inclusion of women with disabilities in the employment portfolio is important. Male counterparts with disabilities avail more opportunities that are generically aligned, so specific importance and delineation are required to build exclusive policy support for women with disabilities. It is important to discuss the years of emotional turmoil that have affected them. Understanding the dynamics of the family nurturing a girl child with special needs and prioritizing between poverty and health is an important point of discussion.
To enumerate the various constitutional challenges, it is important to understand the available resources like the interventions and frameworks undertaken by the government to strengthen and support women with special needs. Realizing the importance of creating a sustainable lifestyle for WwDs through newer investments and mainstreaming the newer agreements is quintessential. Continuous and comprehensive research in this domain can test new ideas and investments.