"Why do you need a condom?" When hospitals fail mothers living with disabilities

In 2017, Josephine Mwende, a woman living with cerebral palsy, got pregnant with her first child. Given her condition, she was excited to give birth since most women with intellectual disabilities don't achieve that milestone. She immediately started seeking antenatal care in a private medical facility in preparation for childbirth.  

Unfortunately, she was turned away from multiple hospitals when she went to give birth. A significant number of women living with disabilities are facing formidable barriers when seeking essential reproductive healthcare services.

Two women reveal the daunting obstacles they have encountered. The struggle for equitable access to reproductive health remains a critical issue, and their voices shed light on the urgent need for change.

Josephine, a 32-year-old mother of one, says that on her due date, despite having everything in place, the private hospital where she received antenatal care didn't accept National Hospital Insurance Fund (NHIF) for delivery. They requested cash, which she did not have.

She visited another private hospital, which immediately dismissed her even though she was clearly in labour pain.

“The nurse who turned me away said they do not cater for women like me (with intellectual disabilities). I was in so much pain, I did not negotiate. My family and I sought assistance at another hospital,’’ she recounts.

Fortunately, she found refuge in a public hospital that not only accepted her, but also offered a private room where she safely delivered.

Reflecting on these experience, Josephine says most medical professionals are not trained to care for women with intellectual disabilities.

“Most people think disability is when you are seated on a wheelchair, but what about intellectual disabilities?’’ she questions.

Lucy Mulomibii, a 52-year-old woman with a physical disability, echoes similar sentiments.

 “When I was nine months old, I attempted to take my first baby steps. My mother noticed something was amiss when I began crying incessantly. Initially, the doctors treated it as a fever, but as time went on, it became evident that I had polio. I couldn’t stand or bear weight on one of my legs. The diagnosis was that one of my legs was paralysed. Since then, I’ve lived with a disability,’’ she explains on what led to her disability.

Today, she is part of grassroots disability-inclusive feminism organisation in Kakamega County. Her daily endeavours are centred on advancing and safeguarding the rights of women and girls with disabilities.

“Globally, approximately 257 million women lack access to contraceptives. This shortage extends beyond contraception and encompasses other essential sexual and reproductive health services. Unfortunately, this contributes to around 67 million unintended pregnancies, leading to more than 76,000 maternal deaths annually. A significant proportion of those affected are women and girls with disabilities.

Lucy explains that whenever she went to hospital to give birth, she felt dehumanised.  

“I am a mother of three girls. I've experienced discomfort during childbirth. Hospital beds are often too high for me to climb. Imagine trying to focus on pushing (the baby) while doctors suggest carrying you to the bed. Unfortunately, the support provided isn't always dignified, and some healthcare providers still stigmatise.’’

She recalls an incident when she visited a hospital and the examination room was inaccessible by wheelchair, so the doctor examined her in the waiting area.

“Imagine the discomfort — discussing personal health matters in a public space where everyone's eyes are on you. Such situations can significantly impact self-esteem. Some of the doctors asked questions that don't directly relate to pregnancy, which can make you uncomfortable. Many women with disabilities avoid going to hospitals for this reason,’’ she says.

Pregnancy progress

Some hospital machines are inaccessible to people who use wheelchairs or crutches, Lucy adds. For example, when she needed to weigh herself during an antenatal visit, the machines weren't accommodating.

“Sometimes doctors just guess your weight when there is a crisis. This is why many women with disabilities suffer or even die - their blood pressure isn't monitored properly, something crucial for tracking the pregnancy progress. Why bother then going to hospital if they can't even weigh you?" she questions.

Dr Nelly Bosire, an obstetrician and gynaecologist, says she understands why some healthcare workers may not know how to care for expectant women with intellectual and physical disabilities - there are no regulations to guide them on the same.

She, however, insists that the general procedure is that all pregnancies are treated the same unless the patient has a special condition.

“In case of a special condition, like high blood pressure or intellectual disability and the hospital can’t handle the case, referral to a tertiary facility is supposed to be done in good time. This is done so that the woman can familiarise themselves with the new hospital,’’ she explains.

Josephine who founded Founder of Able-less Kenya, says healthcare professionals asked her demeaning questions, not commonly directed at able-bodied women, presumed to have inherent rights to sexual and reproductive healthcare.

“Some nurses would ask, "Why do you need a condom?"  Or when she was expectant, “Who did this to you? Were you raped?'' Don’t I have a right to give birth?” she questions.

Side effects

According to a 2021 report by Global Call to Action Against Poverty, globally, women with disabilities are three times more likely to have unmet needs for healthcare compared to able-bodied women.

UN Women also reports that most healthcare professionals, in East and Southern African countries, lack skills to care for women living with disabilities.

According to the Mapping of Discrimination against Women and Girls with Disabilities in East & Southern Africa study, health practitioners were not able to communicate with women with hearing impairments because there were no sign language interpreters. Women with physical disabilities sometimes had to be carried to hospitals to give birth due to the lack or dysfunction of elevators.

“In several countries such as Kenya, healthcare fees are, in principle, waived for PWDs, but in practice, this is not always implemented. Physical access to clinics and hospitals remain problematic even for maternal health. For instance, several women with disabilities interviewed in the course of this mapping shared their traumatic experiences of being treated by disdain, contempt, and negligence,’’ reads part of the report.

Tailored contraceptive methods

“I recall an instance where I resorted to purchasing pills over the counter, as accessing services from healthcare providers seemed daunting due to the fear of judgement.

“Unfortunately, the pills I obtained caused adverse side effects, highlighting the importance of receiving personalised contraceptive methods tailored to individual needs. These barriers persist, impacting the wellbeing of women with disabilities," Lucy recounts.

Even in menstrual health management, she says, girls with disabilities suffer from lack of awareness and sensitivity in the design of menstrual products.

“When I experienced my first period as an adolescent, I once attempted to secure my pad properly. It fell off as I left the classroom, leading to embarrassment, especially because I was in a boarding school. My peers’ laughter made me feel deeply ashamed, impacting my ability to focus on lessons even the following day. Sadly, such discussions were absent even at home,’’ Lucy says.

Women and girls living with disabilities are also overlooked when discussing issues related to menstrual health, leaving them isolated from vital information shared among their peers.

Josephine has now initiated an online petition for public hospitals to stop obstetric violence against expecting mothers with disabilities.

“A woman living with disability has equal rights to sexual and reproductive healthcare as an able-bodied one. They should also be treated with dignity instead of just focusing on their impairment. We are all bringing a life into this world regardless of our impairments.’’ she says.

She also wants hospitals to invest in sign language interpreters for deaf women, and provide private consultation rooms where women with disabilities can be comfortable receiving reproductive healthcare.

“There should also be a toll-free line where women with disability who face discrimination in a hospital can report the matter,’’ she concludes.

Lucy, on the other hand, believes the government should strengthen the capacity of women with disabilities, to enable them to demand and access health services effectively.

“Self-advocacy training plays a crucial role here, empowering women to understand and assert their rights. When women understand their rights, they can actively participate in decision-making processes. By being at the decision-making table, they can articulate their needs effectively. This ensures that stakeholders are aware of and address the specific needs of women and girls with disabilities,'' she advises.

Additionally, she adds that there is a pressing need for more research on sexual and reproductive health issues. Optimistically, such research findings can challenge the current narrative and lead to improvements in sexual and reproductive health services. Furthermore, infrastructure and general access to facilities must be improved.

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