The United Nations Population Fund Sri Lanka (UNFPA) held a virtual symposium on 15 December to discuss the implications of gender and disability on perinatal outcomes, and was held as part of the Perinatal Society of Sri Lanka’s Annual Scientific Congress.
The symposium brought together three eminent experts to discuss the overlaps of gender 
and disability and how this affects pregnant women and those who have just given birth. The panel included Sri Lanka College of Obstetricians and Gynaecologists President Dr. Hemantha Senanayake, General Sir John Kotelawala Defence University Department of Psychiatry Head Dr. Jayan Mendis, and University of Colombo Faculty of Arts Sociology Department Professor of Sociology Subhangi Herath.
UNFPA Representative in Sri Lanka and the Maldives Ritsu Naken opened the symposium explaining that the UNFPA, being the UN’s sexual and reproductive health agency, promotes universal access to sexual and reproductive health services. Naken shared that the disability rights movement has led to many countries around the world ratifying the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and putting national disability policies in place. This included Sri Lanka, who ratified the UNCRPD in 2016.
Sri Lanka’s 2011 census indicated that 8.7% of the pollution lives with a disability. Within the discourse of disability, there are many types of disabilities, and people with some disabilities, like mental disabilities, are often more neglected than those with physical disabilities. With the intersection of gender and disability, Naken shared that women with disabilities often face “double discrimination”, both gender-based and disability-based.
From a perinatal perspective, Naken noted that pregnant women with disabilities often have no access to care and have greater issues with the quality of care received. Healthcare often holds stereotypical views of women with disabilities. Naken stressed that healthcare providers need to be able to provide customised perinatal care to women with disabilities and that men also have an integral part to play in delivery and postpartum care. Now in the wake of the pandemic, which has highlighted the serenity of several issues in gender discourse, is the time to implement recovery measures that factor in both gender and disability.
Dr. Senanayake spoke about the importance of discussions on issues like disability and perinatal care. Dr. Senanayake shared that in the US alone, 26% of the population, according to the Centre for Disease Control, live with one disability or another, be it in the form of vision, movement, thinking, remembering, learning, communicating, hearing, mental health, or social relationships, and that Sri Lanka, who has no reliable statistics on disability, is likely to have as large a proportion of our population living with disabilities.
Dr. Senanayake shared that our healthcare systems, both public and private, are not geared to handle women with disabilities, especially those who are unaccompanied. The public system, Dr. Senanayake said, often isolates pregnant mothers, even from the baby’s fathers, with limited visiting hours and men often not being allowed in delivery rooms.
Dr. Senanayake noted that, across the board, there is a tendency for men to culturally and socially be excluded in perinatal and infant care; from restrictions in hospitals to social restrictions like paternity leave never being considered by companies as well as traditional gender roles.
Dr. Mendis spoke about the nature of healthcare and how, in the public healthcare system at least, women can often face harsh treatment from healthcare workers in the delivery room even if not disabled, with healthcare workers often being insensitive, if not rude, to pregnant mothers in distress during labour and even after birth.
This insensitivity to distress can also present itself when pregnant women try to discuss less significant physical issues during pregnancy. This, combined with the social expectation, even on the part of healthcare workers, that the only reaction to pregnancy must be positive, and lack of sensitivity to changes in a mother’s emotional state after giving birth, can add to the psychological stress of a new or expecting mother.
Dr. Mendis noted that there is positive change happening. For instance, when dealing with pregnant women with mental disabilities, typically babies were transported to the Lady Ridgeway Hospital after birth, with the mother staying on at the Angoda Mental Hospital, but now there is a mother-baby care unit where mothers can remain with their babies and the father can join them too. The Edinburgh Postnatal Depression Scale is also now used to determine maternal mental health, and the Psychological Autopsy Tool for evaluating maternal suicide has been introduced. Dr. Mendis commented that about 30 maternal suicides take place each year, and this maternal suicide is the one cause of maternal death that is entirely controllable and should not be neglected.
Prof. Herath shared that in her sociological research on gender disability, it has always been difficult not to include pregnancy and maternity issues, as it is so difficult to isolate pregnancy and motherhood from the life of a woman.
Prof. Herath commented that cultural and socioeconomic differences pay a big part in perinatal issues, regardless of disability. The expectation of pregnancy only being a wanted, joyous, experience coupled with the pregnancy and motherhood still being regarded as exclusively a woman’s matter, plays a large role.
Though discussion and advocacy for gender equality has been happening for many years, Prof. Herath noted that things still haven’t changed the way they need to. Mothers are still solely responsible for childcare, despite sociologists talking about the importance of a collaborative shared family unit for over 80 years. Fathers are often secluded and discouraged from taking an active role in childcare, and if a mother continues working, it is often seen as her choice and she is expected to balance her work and childcare with little to no support.
Social class also plays an important part, because not all women have equal access to resources, and not all women have the same kind of flexibility with their work when they become mothers. Some women don’t have the luxury of taking leave.
Disability makes things even more difficult for women. People with disabilities are considered entirely inactive by society, but even though a person has a disability, they are just like everyone in all other aspects of their lives and have the same human needs and drives. For instance, Prof. Herath shared, sexuality is very often a total prohibition for people with disabilities by society. Society doesn’t consider them as human, as having urges and needs; they focus on how they’re going to give birth and take care of a child. Conversely, even though people with disabilities are prohibited sexuality, they face a great deal of sexual abuse, with a lot of rape and teenage pregnancies taking place among women with disabilities.
Prof. Herath commented that with disability, we live in an “architectural apartheid environment”, with the physical environment being built solely for people without disabilities where people with disabilities simply do not fit in. They’re not seen as part of the population, and importantly, the healthcare system is free of these norms.
The panel concluded the discussion by agreeing that while change is happening in this arena, it is slow and needs to be fostered because change is a constant, and striving for change leads to a more inclusive world.
