Globally, people with disabilities have considerable unmet needs for sexual and reproductive healthcare, and access to services. Much of this service gap is due to the widely held but incorrect belief that people with disabilities are “asexual” (or, at the very least, less sexual than people without disabilities). 

Pregnancy and parenthood, in particular, are often considered unexpected or inappropriate for women with disabilities. 

This is despite the fact that a 2009 World Health Organization report indicated that rates of sexual activity and childbirth were similar for women with and without disabilities.

Yet, since women with disabilities are presumed to be sexually inactive and either unable to conceive or disinterested in having children, they are insufficiently represented in routine data collection surrounding maternal healthcare and services, making it more difficult to understand and cater to their specific needs.

In low- and middle-income countries like South Africa, problems such as widespread difficulties with obtaining timeous and adequate support for maternal and newborn health continue to be difficult for most women.

However, 80% or more of the 1.3 billion people (16% of the global population) who have some form of disability reside in low- and middle-income countries. As such, we need to think about improving provisions for disabled women within the context of more generalised insufficiencies in public service delivery. 

South Africa’s Constitution and various policies relating to disability rights commit to inclusive access to healthcare. The country is also a signatory to the United Nations Convention on the Rights of Persons with Disability and the Convention on the Elimination of All Forms of Discrimination Against Women, both of which assert the right of women with disabilities to make their own choices about child-bearing.

As we mark Women’s Month, we must think about improving provisions for maternal healthcare for women with disabilities in South Africa. These women are particularly excluded from sexual and reproductive healthcare services, especially when seeking care in the public sector.

While the private sector does not necessarily provide better or more accessible care, most of the women in the country rely on public sector maternal services. It is thus important to better understand existing barriers to access in South Africa and to motivate improvements in public sector maternal healthcare services to achieve a more substantial impact for the wider population.

Barriers

In a study from KwaZulu-Natal, participating women with disabilities talked about the many barriers to obtaining sexual and reproductive healthcare services more generally, as well as in relation to their pregnancy and delivery experiences.

For example, one participant explained that beds in public health facilities were too high and not adjustable, making it hard for people with physical disabilities to get onto them. Nurses would then “scold” these women, expecting them to move more quickly to meet the nurses’ time pressures.

Focusing specifically on their experiences of maternal health services, disabled women in the same study reported that nurses expressed visible surprise, and sometimes anger, that these women were sexually active. 

Healthcare providers could not believe that women with disabilities wanted to have children. Nurses also believed that these women were incapable of caring for their children.

Another participant commented that when she had visited an antenatal clinic to seek support with her pregnancy, she had been told to terminate her pregnancy because she was blind. The healthcare providers at this clinic believed that this woman’s pregnancy would “create problems” for her and also for her family, simply because she was blind.

One woman living with a physical disability had previously had four children that she delivered without a Caesarean section but was repeatedly asked by nurses how she could possibly deliver this child.

In all of the above instances, the negative beliefs of (presumably) non-disabled healthcare workers made pregnancy and delivery experiences much more painful and difficult than they would otherwise have been, with no relation to the actual impairments of these women. 

These experiences demonstrate how specific configurations of resource shortages, inaccessible infrastructure and attitudinal factors may combine to deepen barriers to access.

It is also important to note that women with different kinds of disabilities may require specific accommodations in their maternal care, or none at all, depending on the situation. For example, while women with physical disabilities may struggle to get to facilities for their visits, Deaf women reported high antenatal and postnatal service usage. However, they reported that it was extremely difficult to find healthcare workers who could communicate with them.

Even when healthcare providers used writing, the terminology was incomprehensible, or the syntax was different from that used in South African Sign Language. In other instances, family members were asked to sit in on consultations to help translate, crossing ethical lines as these discussions could have been sensitive since they were about pregnancy and sex.

Towards inclusive maternal care

Drawing on evidence from other low- and middle-income countries, it is clear that healthcare providers in this specific area of provision (and ideally beyond) must be given disability-related competence training to help them offer better care to women with disabilities.

There is also a need for the allocation of additional resources to begin closing the gap through the provision of at least some clinical and facility equipment that could be adapted for use by people with disabilities.

Programmes for improving disabled women’s access to relevant information are also a fundamental part of delivering on their sexual and reproductive rights, including the right to make choices and decisions about child-bearing.

Perceptions about the assumed “asexuality” of people with disabilities translate into expectations that women with disabilities do not – or should not – have or want children. This is similarly evidenced by a recent study suggesting that in South Africa, people without disabilities perceive people with disabilities as having diminished sexual rights.

The hard work of changing negative and stigmatising attitudes is likely to take time, but advocacy by women with disabilities who have successfully gestated and raised children offers much promise.

This also points to the value of involving women with real lived experiences of disability in the planning, design and implementation of more inclusive maternal healthcare provision. Doing so in ways that allow for the perspectives of women with a variety of disabilities and/or impairments will also help the healthcare system to begin adapting to heterogeneity in needs.

Although there are strong local calls to improve women’s access to sexual and reproductive healthcare services and careful, respectful maternal healthcare, the specific needs of women with disabilities are not necessarily highlighted in these discussions. 

There is a need for women without disabilities to include women with disabilities in broader movements for women’s rights in South Africa and beyond, such as in campaigns or activism against gender-based violence.

Ultimately, there must be more recognition of the rights and needs of women with disabilities as they relate to sexuality, pregnancy and motherhood. 

Currently, however, neither the 2021 South African Maternal, Perinatal and Neonatal Health Policy nor the national government’s manual for maternity care in public health facilities contain any specific mention of or guidelines for supporting women with disabilities.

In order to move towards inclusion, the rights and needs of women with disabilities within relevant government planning ought to be noted, or even foregrounded.

Any meaningful commitment to women’s rights must consider and make provision for women with disabilities to meet national, regional and international policies on inclusive human rights. 

Without the inclusion of women with disabilities in these areas, any attempt to achieve global health goals relating to maternal and neonatal health will also be compromised. DM

Dr Zara Trafford and Prof Xanthe Hunt are affiliated with the Institute for Life Course Health Research in the Department of Global Health at Stellenbosch University.