Women with disabilities experience compounded discrimination. They navigate a world where their rights and needs are frequently overlooked, both as women and as individuals with disabilities. This double marginalization extends into maternal health, where they face unique challenges that are often ignored by healthcare systems and policymakers. Bodily safety of pregnant women and mothers living with disability is critical to uphold their human dignity and achieve holistic safety.
Image Credit: University of Western Cape / Photovoice Library Exhibition
Currently, the maternal mortality rate stands at 278/100,000 live births according to ZDHS 2018 report. Maternal health is a cornerstone of public health and ensuring that every woman has access to the care she needs is critical for achieving zero maternal deaths.
However, for many girls and women with disabilities, the journey through pregnancy and childbirth is fraught with challenges and often overlooked by healthcare systems.
These marginalized individuals face double discrimination from society due to their gender and further because of their disabilities. This dual marginalization amplifies their struggles, and yet, despite their unique needs, there is an evident absence of specialized data and support systems to cater for them.
Tracking the number of girls and women with disabilities who give birth is problematic due to a lack of dedicated records. Although previous health registers included a column for "risk pregnancies" where women with disabilities were sometimes noted, this approach was far too broad. These registers did not specifically identify or cater to the needs of expectant mothers with disabilities.
The lack of a specialized registry for pregnant women living with disabilities not only obscures their numbers but also hinders the ability to provide tailored care, potentially increasing the risk of adverse maternal outcomes.
As a result, it is challenging to offer the specialized treatment and support these women require. For example, facilities in Mkushi and Kabwe where I have attempted to find specific data on expectant mothers with disabilities revealed only generalized information. This is a significant oversight, as the absence of disaggregated data makes it impossible to account for or adequately support these marginalized women.
A Layered Struggle of Double Marginalization
The healthcare needs of these women are distinct, encompassing not only the typical requirements of expectant mothers but also those arising from their disabilities. For example, a woman with physical disabilities may need specialized equipment or assistance during childbirth. In contrast, a woman with a cognitive disability might require additional support to understand and navigate pregnancy-related health information.
Without targeted attention and resources, these women are at a higher risk of complications and poor health outcomes. Unfortunately, the current system does not provide the necessary support, and as a result, they are not directly involved in their own healthcare decisions or adequately supported through their pregnancies.
The Call for Zero Maternal Deaths
Achieving zero maternal deaths is a critical goal that requires meticulous documentation and monitoring of all pregnant women, especially those in marginalized groups. However, the current lack of specific data for pregnant women with disabilities undermines this objective. Without accurate records, healthcare providers cannot identify and address the unique risks faced by these women, and health systems cannot allocate resources effectively to ensure their safety and well-being.
Recommendations for the Ministry of Health in Zambia:
Therefore, the Ministry of Health should revise and implement dedicated registers or a specific role for tracking pregnant women with disabilities for better data collection and analysis, enabling healthcare providers to identify trends and address specific needs effectively.
Additionally, Healthcare providers need to offer specialized care that addresses the unique needs of expectant mothers with disabilities. This could include accessible prenatal classes, adaptive equipment for labour and delivery, and individualized postnatal care plans.
Medical staff should receive training on the specific challenges faced by women with disabilities during pregnancy and childbirth. This would help them provide more compassionate and effective care.
Recommendations for the NGOs working on SRH:
Organizations that focus on maternal health have not adequately addressed the needs of expectant mothers with disabilities. This oversight is evident in the lack of specialized registers and the absence of targeted initiatives to support these women. The general data collection methods currently in place do not suffice to understand or cater to the specific challenges faced by disabled mothers. This has to be adopted to ensure maternal health of persons living with disabilities.
Organizations and policymakers must advocate for the rights of pregnant women with disabilities and work to eliminate the barriers they face. Raising awareness about their specific needs and challenges is crucial for driving policy changes and improving maternal health services.
This issue is particularly significant for adolescent girls with disabilities, who are frequently overlooked in targeted interventions. When compiling statistics on teen pregnancies, data often aggregates all adolescents together, neglecting the unique challenges faced by girls with disabilities. This lack of distinction marginalizes them further and exacerbates their already challenging situations.
In my experience as a special education specialist working with hearing-impaired girls, it became clear that they often engage in sexual activities at a young age with minimal knowledge about sex. They frequently do not practice safe sex, as they are not adequately informed about available methods.
Recommendations for Individuals:
Cultural beliefs often stereotype individuals with disabilities, especially girls, as asexual or incapable of sexual activity. This misconception leads to the myth that they do not require contraceptives or sexual education, thereby restricting their access to reproductive health services.
The topic of sexual health and contraception is often considered taboo, particularly for girls. This is even more pronounced for girls with disabilities, who already face marginalization and additional barriers to seeking and receiving contraceptive information.
Cultural attitudes often slow down the provision of comprehensive sexual education to girls with disabilities, depriving them of the knowledge necessary to make informed decisions regarding their reproductive health.
In conclusion, girls and women with disabilities are an often overlooked and underserved group within the realm of maternal health. To achieve the goal of zero maternal deaths, it is imperative to recognize their unique needs and challenges. By improving documentation, providing specialized care, and fostering a more inclusive healthcare system, we can ensure that all women, regardless of their abilities, receive the support they need for a safe and healthy pregnancy.
Safety First for Girls (SAFIGI) Outreach Foundation is focused on systemic change to ensure reporting safety issues and receiving post-care is accessible to the most marginalized girls. Our goal is to create an interactive and responsive holistic safety application through our Holistic Safety Analysis and Intervention program to ensure girls living with disabilities lead lives where their safety needs are fully met.
Written by Chomba Nyemba
edited by Hadassah Louis
Chomba Nyemba is an Advocacy Lead at Safety First for Girls (SAFIGI) Outreach Foundation. She champions bodily safety and emotional safety. Her area of focus in inclusion of person's living with disabilities and ensuring they attain holistic safety.
This is an amazing piece of work Chomba. Well done!
This is a greatly overlooked topic. The dignity and autonomy of persons living with disabilities can only be enforced once they are counted. Thank you for sharing this important work Chomba 🙏🏾