Battle Against Exclusion: Disability rights advocates in India call the government to include them in COVID-19 vaccination plans
"It surprises me how humanity has failed globally on vaccine distribution ethics. It's purely reasonable that disabled citizens receive priority access given heightened risks. As for India, our biggest disadvantage in getting access is the lack of data 'proving' risk", Vaishnavi Jayakumar, Disability Rights Alliance, India.
On December 16, 2020, a group of 10 Disabled People's Organizations, 4 individual activists with disabilities, 12 Non-Governmental Organizations working with persons with disabilities, and 1 Parents Organization from across India wrote a private letter to the President, Prime Minister and Health Minister requesting to prioritize COVID-19 vaccination for persons with disabilities. According to this letter, India is home to nearly 150 million people with disabilities 25 to 30 million of whom have high support requirements. Most of them live with their families and rely on the care and support provided by the family. This means that there are at least 25 to 30 million support persons in daily and close contact with persons with disabilities in India. So, we are looking at nearly 50 million people who need specific attention and prioritization, which is not routinely forthcoming.
In their letter, Indian disability rights advocates have mentioned the below reasons for high risk among people with disabilities
- People with disabilities and their families face unique challenges during the COVID-19 pandemic including a higher risk of contracting the virus if they are older and/or if have serious underlying health conditions such as heart or lung disease and/or compromised immune systems.
- We experience a higher risk of virus spread as we require close contact with others as a result of personal support needs (for daily living), and/or many of us live in shared settings like a group home.
- We experience greater challenges as a result of public health measures such as physical distancing. This can create greater social isolation and interruption of important support networks.
- We experience more challenges in accessing the basics of daily life, as the community at large adapts to public health measures.
- Family members experience increased caregiving demands if staff shortages or temporary care is not available.
- Family members experience fear of how their loved ones will be cared for if they themselves become ill with COVID-19 and are no longer able to provide support.
- People with disabilities and our family members experience fear in regards to how visitor restrictions may delay the family from providing critical communication support and/or supported decision making for critical healthcare decisions.
- Self-advocates and family members are fearful that people with disabilities will be discriminated against if health care resources are limited.
- People with disabilities face communication barriers. People who are hard of hearing have issues with face masks as they can’t read lips or see facial expressions. People who are deaf and use sign language need access to interpreters.
- People who can’t speak may require email, text or supported communication options.
Accordingly, disability rights advocates have called Indian authorities to take the below measures:
- Prioritization of persons with disabilities to access COVID-19 vaccination when it is available.
- Accessibility of vaccination centres and the process is of high importance.
- Involvement of persons with disabilities and their representative organizations are of paramount importance from the planning stages of vaccination against covid 19.
- This group also wrote to Provincial Chief Ministers, Health Ministers and Disability Commissioners in 5 Provinces in South India.
Despite this timely strong advocacy, not only did Indians with disabilities not get any reply. The Government came up with its own priority list disregarding disability rights:
"In the first phase of the immunization drive, nearly 30 million health workers, from both government and private sector, and frontline workers will be vaccinated. These include cleaners, police and paramilitary, home guards, disaster management volunteers, and revenue officials associated with containment and surveillance. In the second stage, those above 50 years of age, and those below 50 years of age with comorbidities or with a high risk of infection, will be vaccinated", the Prime Minister confirmed the details in his virtual meeting with chief ministers, Reported by Hindustan Times on 12th January 2021.
Indians with disabilities suing the government
The exclusion of persons with disabilities from the national vaccination plan did not cause disappointment among disability rights advocates. Meenakshi Balasubramanian, Co-Founder of Equals, Centre for Promotion of Social Justice, filed a legal petition before the high court of her provision:
"Persons with disabilities require specific support services including habilitation and rehabilitation services and the nature of the services required also compromise the various safety norms prescribed for protection against COVID-19. Persons with disability are already at a position of disadvantage owing to multiple barriers including access to information regarding health services, inaccessibility of health services and health infrastructure, the increased financial burden due to loss of income/reduced income of the individual and the family providing primary care. They also suffer due to the lack of adequate social protection and income security due to the pre-existing inequalities in access to education and employment of persons with disabilities. Unless and until vaccination is prioritized it is unlikely that we will move out of our socio-economic and health crisis which will lead to further disability", she said.
The court has given 3 weeks time for the Union and State Government to respond.
>> Learn more about Persons with Disabilities and Access to COVID-19 vaccination here.
>>Learn more about COVID 19 and the disability movement here.