Disabled mothers often have no safety nets or financial support from the state. States like Kerala, Maharashtra and Karnataka have pension schemes to support parents or caregivers of persons with disabilities. But this does not encompass support to disabled mothers in raising their children. Women with disabilities need financial support in not only accessing caregiving assistance for their children which can be prohibitively expensive but also for disability-related expenses, such as medication, adaptive equipment, transportation and housing modifications. State-driven financial safety nets become even more imperative as 69% of the disabled population in India lives in rural areas according to the 2011 census with inadequate support and fewer resources.
“The social stigma about women with disabilities pervades through the legal and state institutions too. This means that the care and support that disabled mothers require is simply not there as the state does not see them “capable” of being a mother”, says Das.
Shampa Sengupta and Swagata Raha in their paper found that, for several disabled women raising a child without state support is difficult. While the Rights of Person With Disabilities (PWD) Act, 2016, makes a provision to support women with disabilities for livelihood and the upbringing of their children, it does not make it obligatory for the state to provide any assistance to disabled women who become mothers.
“There is no systematized policy or scheme that specifically looks at disabled mothers, largely because there are a lot of different ministries and departments involved”, says Rupsa Mallik, former director of Creating Resources For Empowerment in Action (CREA), a global feminist organisation working on human rights. “Maternal health and benefits fall under the ministry of health and family welfare, disability rights under the ministry of social justice and then there are other schemes under the women and child department ministry.”
Disability inclusion is absent even in a lot of schemes and policies related to maternal health. For instance, the Pradhan Mantri Matru Vandana Yojana (PMMVY), which provides conditional cash transfer to pregnant and lactating mothers for wage-loss during childbirth and initial months of motherhood, imposes conditionalities such as completing prenatal care and child immunisation in the first six months, to be able to access the benefits. Many of the spaces where these services can be accessed are themselves inaccessible for disabled mothers.
Western countries, like Canada, have nurturing assistants to help with childcare tasks. In Sweden, disabled people have the right to personal care, irrespective of their diagnosis. They can use personal care for whatever tasks they require support in, including child care.
“We have to rely on family and friends at times of distress because there is no state support,” says Harpriti Reddy, a deaf woman who is mother to a thirteen-year-old daughter.
Apart from caregiving services, support for disabled mothers also includes enabling them to participate meaningfully in their child’s life, such as making sign language interpreters available at parent-teacher meetings for deaf parents.
While acts like the Persons with Disability Act, 1995 have made provisions for employment for people with disabilities in the public sector, and organisations like National Handicapped Finance and Development Corporation give loans for persons with disabilities, the implementation remains tardy in both areas. There is no targeted support for disabled mothers, thereby, missing the intersection between disability and motherhood.
Disability rights advocate and lawyer Amba Salelkar, who lives with psychosocial disability, narrates her experience with financial anxiety during the early years of motherhood.
“Though I considered myself a veteran when it came to my mental health issues, I found myself completely taken by surprise when it came to postpartum depression and anxiety. I needed support, which I didn’t realize at the time, even to communicate. Additionally, I was pressured to work, because I was a freelancer, which meant that there was no maternity leave.”
Salelkar managed to tide over with some savings and financial support from her partner, who had to return to work soon after their son’s birth.
“The thought of having no income for nearly a year after my child’s birth was extremely distressing, especially since I was paying for a support person to help with the child and around the house.”
It is tougher for single mothers with disabilities to cope with the demands of parenting as policies and schemes are entirely absent to support them. Schemes, like the Indira Gandhi National Widow Pension Scheme, once again, miss out in including disabled mothers.