How persons with disabilities struggle with reproductive health care

Josephine Mwende is a cerebral palsy survivor.

Reproductive health care is essential to everyone, however, individuals living with disabilities are still facing challenges in their quest for the services.

Josephine Mwende, born with cerebral palsy condition, says that accessing reproductive health care has remained a major challenge in her life.

Cerebral palsy is a group of neurological disorders and disabilities that can cause disability in movement, balance, and posture of a patient.

Bringing back the memories, Josephine remembers her teenage life and how she faced the adolescent physical changes.

“When I first saw my menses at around 10 years, I really got scared. I had heard my peers talking about menstruation in school but I thought mine would come a bit later in life. I never expected it that soon,” she recalled.

As a teenager, she had little knowledge about reproductive health. The little she knew, was from lessons in school. In fact, she had no idea of how to keep her menstrual hygiene.

Back at her home, there were no funds to purchase sanitary towels, and Mwende says she had to make use of cotton wool.

“I was very ignorant, I didn’t know much about sexual reproduction. My mother got me a cotton wool and showed me how to use it during my menses,” Mwende recalls.

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In school, she quickly blended with fellow girls and learned a lot with time about menstrual hygiene and other reproductive health issues.

The 32-year-old reveals that she had no idea about the existence of family planning until she one day realized that she was expectant after college.

“I started having mood swings and missed my menses then I decided to conduct a pregnancy home test. I confirmed that I was expectant and started my antenatal visits,” she says.

During her antenatal visits, she did not experience challenges even though she could not understand why fellow patients looked at her with sympathy as some whispered in her presence pointing towards her direction.

It was in March 2017, when she had an unforgettable experience at the hands of medics being tossed to different health facilities.

“On the day I was in labour pain, my mother rushed me to a nearby hospital but the in attendance told me that they needed cash to facilitate my delivery and I had to look for another hospital that could accept my insurance cover,” she narrates.

Her mother took her to another hospital but the reception was quite hostile.

“The water had already broken (membrane rapture) but when the medic in charge saw me, he told me that they don't attend to people of my kind,” she recounts teary-eyed.

Luckily, she was rushed to a national hospital where she was attended to and delivered her baby safely.

Through the Nguvu collection, the mother of one has now embarked on an initiative for online petitioning the government and relevant stakeholders to empower healthcare workers with knowledge and empathy to treat women with cerebral palsy.

Josephine is not alone, Sarah Bosibori, an autistic adult also expresses her fears about seeking reproductive health care in hospitals.

Sarah Bosibori has battled autism since the age of four.

Autism spectrum disorder is a neurological and developmental disorder that affects how people interact, communicate, learn, and behave with others.

“I am really scared of going to a hospital to ask for reproductive health services. How do I explain to the doctor that I am sexually active?” Sarah poses.

The 29-year-old's fears are derived from previous experience with the myths that people have about disabled individuals.

“Some people think that women with disabilities are asexual. You get to a medical facility and the medical practitioner asks why you need reproductive health care,” Sarah says.

Sarah feels that such questions are only posed to women with a disability which she feels is very offensive.

She also feels that the caregivers of disabled individuals are so overprotective that, in some instances, they speak on behalf of the patient.

“I get pissed off especially when I visit a health facility and the doctor in charge seeks opinion from my caregiver instead of taking my word as final,” she says.

Since she was diagnosed with autism at 4 years old, Sarah has struggled with her identity and has since then accepted and learned how to take care of herself.

Through online campaigns, she has been actively championing equity in the delivery of healthcare services for autistic patients.

The challenge of access to reproductive health care is experienced by both genders and basically, people disabled differently.

Nicodemus Nyakundi shares his experience while trying to access family planning services.

Nicodemus Nyakundi has a Charcot left leg.

Nyakundi has a physical disability with a Charcot left leg and narrates his childhood life and how he found out about sexual reproductive health.

“It was around the year 2006 during the epitome of HIV/AIDs stereotyping when we would be shown videos of victims mostly in full-blown stages. The videos were gross and scary and it formed the basis of my understanding of sexual and reproductive health,” Nyakundi narrates.

The 28-year-old says that was the only form of reproductive health education that he could receive in school which he believes was meant to scare him as an adolescent.

Growing into adulthood he came to learn more about the disease and other infections but the challenge came to him when he sought to understand reproductive health.

“Sometimes I would go to a hospital to consult about family planning services but because I went limping I got weird responses. The person in charge would ask me why I can't wait to get well first before you engage in sex,” says Nyakundi.

He says that it sounded like a joke but deep inside he knew that he was perceived as a person who couldn't engage in sex or reproduction.

Having visited different health facilities, he feels that inequity in healthcare provision is caused by a lack of awareness and inadequate resources.

Samuel*, visually impaired says that his journey of seeking health care services has not been easy.

He says he used to learn about sexual education through friends and radio.

“I feel like there is no targeted awareness of blind people. There is no community empowerment related to the visually impaired,” he says.

He reveals that he feared getting into sexual relationships to avoid rejection from the opposite sex.

“I once got attracted to a lady but when I showed my advances she told me that she doesn’t have the grace to marry a blind person,” Samuel says.

Hence, he didn't get into relationships and never inquired about reproductive health services.

He says that in adulthood people were always curious about how he went about his sexual life.

“A friend once asked me, how do you manage to engage in the sexual act in your condition?. So I imagined the kind of questions I could get when I visit a health facility,” he said.

Samuel says that the discrimination, inequity, and lack of inclusion have lowered the self-esteem of people of his kind discouraging them from seeking services in the facilities.

According to Doctor Nelly Mugo, a reproductive health specialist, healthcare providers face various challenges when attending to persons with disability.

“As a practitioner, I tend to act on respect for the autonomy of my patient but at times it becomes difficult when he/she can not express themselves due to communication barriers,” Dr.Mugo says.

She also cites challenges like curiosity which makes the medic want to know more about the patient’s life in detail.

“At times, fellow patients get disrespectful asking how a disabled person got pregnant. However, this draws empathy from the service providers who then offer social support to the patient,” she added.

She says that despite encountering numerous challenges when attending to such individuals, she has learned in the process to treat them with care since “they are very special”.

The Ministry of Health has however noted that there are still challenges in accessing reproductive health care in the facilities.

While appearing before the Senate on November 1, 2023, Health Cabinet Secretary Susan Nakhumicha confirmed the state has been facing a significant challenge in the provision of disability-friendly maternal healthcare.

“Reproductive health and maternal health services are now offered in both outpatient and inpatient services. However, there is a significant challenge in the provision of disability maternity-friendly in health facilities,” Nakhumicha told the plenary.

She further read a preliminary report from facility assessment that sought to evaluate whether the health facilities had disability-friendly infrastructures such as ramps/lifts, friendly washrooms, maternity beds, and wheelchairs.

“In a recently concluded facility assessment report, out of 12,483 facilities analysed, 47 per cent had at least one disability-friendly infrastructure, 82 per cent had at least a ramp, 54 per cent had wheelchairs,15 per cent had disability-friendly washrooms and only seven per cent had disability-friendly maternity beds. Further analysis revealed that 80 per cent and 42 per cent of level 6 and 5 facilities had disability-friendly maternity beds,” she noted.

The CS said that disability mainstreaming mechanisms are ongoing in health facilities to enhance the unhindered safe movement of people with disability and access to reproductive health services.