Women with Disabilities in India: Access to COVID-19 Vaccination
By Radhika Saxena
India has been coping with an overwhelmingly alarming second wave of the COVID-19 virus. The situation remains very distressing for citizens and frontline workers alike. Overburdened with patients, the healthcare system has collapsed. Many hospitals ran out of oxygen and critical drugs, as well as available beds.
Cases peaked at around 400,000 new cases daily and are currently around 170,000 with over 320,000 total deaths. These figures likely understate the true state of affairs given the lack of widespread testing and poor documentation. Nevertheless, this data is very disturbing considering that India is the second most populous country in the world with 1.2 billion people. Persons with disabilities (“PWD”) account for 2.21% of the population (26.8 million among 1.2 billion persons) with women with disabilities (“WWD”) making up 1.9% of the female population.
PWD are disproportionately impacted by coronavirus and those with specific disabilities or chronic conditions are more vulnerable. WWD have been hit harder owing to the intersecting forms of discrimination they face. A global human rights survey conducted by Women Enabled International in March 2020 revealed that COVID-19 related lockdowns and measures led to gaps in access to health care facilities and support, access to food and hygiene items, increased risk of violence, loss of employment and exacerbated prevailing lack of social protection for WWD. Local reports noted similar issues with respect to WWD in India. Despite this, data collection in India on COVID-19 cases is not disaggregated by disability. One would’ve hoped that given the gendered and intersecting impact of COVID-19 on WWD, the government would reflect it in data collection and prioritized them in vaccination policies.
Persons with disabilities account for 2.21% of the population in India (26.8 million among 1.2 billion persons) with women with disabilities making up 1.9% of the female population.
COVID-19 Vaccination Program in India
India is only the second country in the world to have administered 200 million doses of COVID vaccines. The vaccination program began in January 2021 with healthcare workers and was soon expanded to include frontline workers the following month. In March, persons aged 60+ years and those 45+ years with 20 specific co-morbidities, became eligible. This was followed by opening eligibility to those aged 45+ years by April and, finally, those between 18–44 years became eligible as of May.
To avail any of the three vaccines now available in India, one must mandatorily register on either of the two online government portals/phone applications — COWIN and Aarogya Setu. Both require a mobile number to register and log in. Every log-in prompts a One Time Password (OTP) sent to the registered number to access the portal. An identification document (ID) is required for registration. Vaccination slots can be scheduled for up to four persons linked to one mobile number. Upon clicking on Schedule Appointment, the portal shows the available slots at both public and private vaccination centers, the vaccine type available and its price. Searches can be filtered by using PIN codes or district-names in each state.
Barriers to vaccine access
India is a deeply patriarchal country. Patriarchal attitudes impact each aspect of the lives of women, including access to healthcare and vaccination. WWD are doubly impacted given their intersecting identities. Dalit WWD and those who are undocumented or located in rural areas may face further hurdles to vaccine access. The requirement to show a proof of ID to register on the COWIN platform may exclude WWD who might be undocumented or otherwise not have documentation for various reasons. Though the government has issued guidelines for vaccination without ID, they appear to be left to the discretion of local authorities. Dalit WWD may further be excluded due to caste-based discrimination and stigma, very much prevalent in India today. Other issues — such as the low literacy rates among WWD in India — further exacerbate the situation.
The government’s phased vaccination drive does not prioritize PWD in any manner, let alone WWD. The government’s Vaccines Operational Guidelines make no mention of PWD except for a checklist for the physical inspection of vaccination sites — a question on ramps for physically disabled persons. Further, though Phase II accounted for persons 60+ years and those 45+ years with specific co-morbidities, it did not include all the listed disabilities as per the Rights of Persons with Disabilities Act, 2016. Various Public Interest petitions have also been filed in courts to prioritize the vaccination of PWD. Indian disability rights activists have further sought removal of the age bar and demanded caregivers of PWD also be prioritized.
Women with disabilities are doubly impacted given their intersecting identities. Dalit women with disabilities and those who are undocumented or located in rural areas may face further hurdles to vaccine access.
Access to vaccines is further complicated by the fact that the government has abandoned its previous practice of centrally procuring all vaccines from manufacturers and securing their distribution to persons through the state free of charge. As a result, state governments are required to negotiate prices and procure vaccines from manufacturers individually. This has led to differential pricing across India and impacted vaccine access, particularly for WWD, who have experienced increased financial precarity during the pandemic, and who may not have independent access to sources of money or their finances.
WWD have among the lowest rates of mobile and smartphone ownership, with a gender and disability gap of 37% in India. They face exclusion from the very start of the process as COWIN and Arogya Setu require steady internet connections. Moreover, these platforms are not particularly screen-reader friendly, thus impacting access for women with sight-related disabilities. Vaccination slots for individuals aged 18–44 years get booked within seconds, which yet again excludes WWD who may not be able to respond to the platform instantaneously. The platforms are only available in Hindi and English, which further excludes linguistic and cultural minorities. Individuals aren’t required to fill out disability or co-morbidity related information, thus preventing collection of disaggregated data. The COWIN website doesn’t currently reflect data disaggregated by gender, let alone disability.
Additionally, there is a lack of accessible and reliable information to decide on vaccination. Rural areas are seeing a lot of vaccine hesitancy for this reason. For WWD, this means that if their family members are hesitant about getting the vaccine, they may be dissuaded from getting it as well — an issue further compounded by the lack of legal capacity rights and inability to decide on vaccination for themselves.
WWD in institutions may not have any choice in terms of vaccination due a lack of legal capacity rights. They may also be hesitant to get vaccinated due to negative experiences they may have had with the health care system, such forced sterilizations and medical treatments without their consent.
Many vaccination centers are also not physically accessible. WWD who do not own independent means of transport or require transport-related support, may be constrained to depend on family members, particularly male members of the family to take them to the centers. Disability rights activists have thus called for vaccination of PWD in their homes or at separate centers. Though certain states like Odisha are offering this to PWD, preliminary information received from the ground level in Bengal and Odisha reveals that there is a shortage of vaccines, particularly in rural areas.
In a telephonic conversation, Dr. Nandini Ghosh, associated with the Women With Disabilities India Network (WWDIN), informed me that high transport fees further alienate WWD from the vaccination program, as they are more likely to experience income and livelihood setbacks. She further added that there is a patriarchal discourse around vaccination, which prioritizes the vaccination of men with disabilities over WWD, who have low status in the family hierarchy.
Following advocacy from disability rights organizations and activists, the government is making efforts to provide for PWD, with directions recently issued for home vaccination or separate centers to be set up for PWD and walk-in registrations for vaccination. Whether these directions are implemented properly remains to be seen.
The Way Forward
There has been a lot of global attention to the issue of vaccination access for PWD. However, WWD have not specifically been accounted for. In India, there has not been an intersectional approach to the barriers that WWD face, or to how they may be addressed by the government and civil society. Addressing them will encourage a more equitable vaccination process and will go a long way in controlling the spread of the pandemic and preventing COVID-19- related deaths. To do this, WWD must be prioritized for vaccination and their informed consent be sought; accessible information regarding vaccination must be ensured; and care must be taken to ensure that WWD have transport support available free of cost or at subsidized rates to travel to and from the vaccination center, in case home vaccination is not possible. Lastly, WWD must be encouraged and provided with a support of their choosing to decide on the specific vaccine they would like to get.
About the author:
Radhika Saxena is a women’s rights lawyer based in New Delhi, India. Her work focusses on gender-based violence, disability rights and labour law.
