Twenty years ago, Margaret Khaoya’s life changed overnight. Then 22 and physically disabled, her family found out that she was pregnant.
“It started with threats. My stepmother told me that if I gave birth, she’d throw my children into a river. Then one day my father took me to a hospital in Kakamega and left for Nairobi, never to return,” she says.
What followed was months of being scorned by midwives at the hospital.
“The idea of a disabled woman bringing twins into the world was unthinkable,” says Ms Khaoya, who was disabled by polio at the age of 10.
But the trauma that lingers is the forced sterilisation, a procedure where doctors blocked her fallopian tubes permanently to prevent further pregnancies.
“I wasn’t asked for consent, neither did I have a family member to question it,” she says.
“The mockery from the midwives asking how and why I got pregnant, lecturing me on the burden that I was imposing on society by being sexually active and questioning my ability to be a good mother to my twins pains me to date.”
Then the babies died two months later.
“I see how happy my agemates are because they have children. I could have gotten other children who could be helping me with house chores or provide for me because I make very little from sewing school sweaters,” says the 42-year-old.
For years, Kenya has failed to unpack the sexual and reproductive rights of the disabled. They are still targets of sterilisation, forced abortions and discriminative menstrual hygiene practices.
Lucy Mulombi, a disability, sexuality and rights activist, understands too well the burden of women with dwarfism, albinism, deafness, blindness, and those without limbs.
“Cases of sterilisation and forced abortions are high, especially among the intellectually disabled. Others die. Yet it is their right to get children and proper family planning services,” she says.
She recounts the story of a woman born with dwarfism, who got married and was looking forward to starting a family.
“She had barely settled in the marriage. Her mother-in-law threw her out of her matrimonial home saying that a short stature woman cannot bear her grandchildren,” she says.
Why is the stigma around disability and sexuality still prevalent?
Ms Mulombi says part of the reason is that some Kenyans perceive disabled women as asexual — that they lack desire for sexual relations, have no interest to be mothers, hence do not need family planning and maternal health services.
There is also the lack of education among health professionals that most women with disabilities can become pregnant, have normal labour and childbirth, and care for their children without problems.
“I remember a woman who was so embarrassed when a nurse asked ‘Who did this to you?’ Pointing at her stomach. ‘Men are very bad; how could someone do this to you?.’ She was telling her all these, yet her husband was standing next to her,” she says.
“We go to maternity clinics, and a nurse will spend quite some time touching our hunchbacks or leg stumps asking if it pains. This is an irrelevant question. I have come to a maternity clinic to receive maternity services just like any other woman. Touch my stomach, and find out how the baby is doing, not my hunchback,” she adds.
The most rarely spoken about, Ms Mulombi says, is menstrual health and how sanitary pads manufacturers have overlooked consumers with disabilities.
There is no use of sign language in sanitary pad advertisements. There are no pads that better fit women or girls with deformed or prostheses or no limbs.
“Every girl with limb deformities gets uncomfortable using the normal sanitary towels. If one has no limbs, the pad falls because it cannot be properly kept in place. This causes leakage and the girls are laughed at in school. Those without fingers also find it hard to tear the packets,” says Ms Mulombi.
Disabled women are frustrated by the uncomfortable mass-designed sanitary pads, and now they are asking for a better fit.
“The manufacturers haven’t thought about us. So we’re forced to educate the young girls to opt for reusable sanitary panties. But the challenge is most cannot afford and they’re not easily available in rural areas,” she adds.
Menstrual hygiene for the disabled is also not openly discussed by campaigners. Even though they have been intensified awareness, especially in schools, they do not address the needs of disabled girls.
“It’s particularly hard for young girls to ask questions at an age where how you don’t want to appear to others as different and so they suffer the shame of constant leakages,” she says, adding that these are the same challenges that deaf girls face because they find it difficult to communicate to their parents about periods, using sign language.
“I see a lot of social stigma, especially in rural areas. People view disabled’s sexuality as taboo,” says Ms Mulombi who formed an organisation to help disabled girls and women talk about their challenges.
After hearing heartbreaking stories of prejudice, she started the Mwambuli Women and Girls With Disability in 2016. The more than 30 women aged between 13 to 54 have different disabilities: dwarfism, albinism, psychosocial and intellectual and physical.
Besides meeting to talk about their challenges, they started an income-generating activity — making liquid soap which they sell and buy better sanitary wear.
But what worries activists most is the insensitive comments from healthcare workers and clinics that turn them away, thinking that disabled women must undergo surgery, which is not necessarily the case. The mockery has made many abandon ante-natal care or ditch hospitals for unsafe home deliveries.
Others go to hospitals only when labour kicks in, missing out on months of care, a period when doctors could have detected abnormalities and preventable illnesses in the mother and child, advise on proper nutrition, and assess if the baby can be born naturally or through surgery, especially in women with spinal cord injuries.
Those who seek hospital services, face another obstacle. The maternity wards are not set up to serve patients with disabilities.
“When I was pregnant, I was told to climb on the bed. I couldn’t. It was too high. A friend who uses crutches gave birth on the hospital corridor, by herself. In public hospitals, you rarely get prompt assistance even if you’re pregnant and in labour. They expect you to walk through those long corridors to the maternity wards using crutches,” says Ms Khaoya.
The maternity clinics also lack disability-friendly equipment. They have no adjustable exam tables or weighing scales or accessible bathrooms.
“You find a disabled pregnant woman being carried onto the bed, sometimes by many men who carry her in an undignified manner. She is also not weighed because the machines are in standing positions. You cannot stand on it in a wheelchair.
“Therefore, most doctors guess the pregnancy weight. This poses challenges to wheelchair users who are at increased risk for pressure ulcers during pregnancy due to weight gain,” Ms Mulombi says, adding that it is even more humiliating for women undergoing vaginal ultra-sounds and they cannot bend their knees.
Cultural taboos and ignorance heighten the continuing stigma.
The World Health Organisation (WHO) says informing young persons with disabilities about sexual and reproductive health is often difficult because parents and educators “often do not know how to broach the subject”.
“As a result, many young people with disabilities do not receive even basic information about how their bodies develop and change as they mature. They do not even know the basic vocabulary about their bodies, and so they are not able to describe what is happening to them or whether someone is taking advantage of them,” it noted in a sexual and reproductive rights report.
“I remember a deaf couple went to a VCT clinic. The counsellor taught them about safe sex by putting a condom on a wooden male organ.
“When they reached home, they put a condom on a wooden thing. Such incidents may seem laughable, but they show how most VCT centres lack adequate sign-language experts. We are even neglected in HIV/Aids care and if someone gets the disease they rather stay at home than seek help,” Ms Mulombi says.
Most of the community health volunteers who conduct surveillance of HIV/Aids patients and refer pregnant women to hospitals to lower child and maternal deaths are also not trained in sign language.
“Once they reach a deaf person’s home or one with intellectual disabilities they jump the household and go to the next,” says Ms Mulombi.
Poverty also contributes a lot because many hospitals are far. To access those facilities, one must walk long distances, an inconvenience especially to the physically challenged.
“A woman in a wheelchair has to pay for two boda bodas. One to carry her and the other carries the wheelchair. Most of them cannot afford to pay for two boda bodas to and from the dispensaries. And yet CHVs bypass them,” she says.
To better understand the barriers people with disabilities face in accessing care from midwives, Ms Mulombi says, the solution is to first have adequate customer care representatives in hospitals that can cater to the needs of the disabled, not the one or two sign language specialists scattered in some public hospitals.
The government must also work with disability communities to better understand their needs.
“If you want to help a disabled person, involve them. We know the solutions to our problems. The government imagines we cannot speak for ourselves. In Kakamega, for instance, they bought very many wheelchairs for the disabled.
“They assume that every disabled person needs a wheelchair. Yet some need special eyewear or body lotions,” Ms Mulombi says.
“One day I invited the CEO of a public hospital to our meeting to listen to our plight. He sent someone from the physiotherapy department instead. They assume all that people with disabilities need is physiotherapy, ignoring our other health needs.”
As women with disabilities confront the hardships in maternity wards and sexual health clinics, Ms Khaoya wonders why consent is never at their table.
“Why do doctors ask women to seek permission from their husbands before fallopian tubes are permanently tied? Are we not women too? Why do they sterilise us without our knowledge or understanding or our partners’ consent?” she asks.
If passed into law, the Reproductive Healthcare Bill 2019 will offer disabled women some protection from unwanted, unreported sterilisation procedures and forced termination of pregnancies.
“Termination of pregnancy is prescribed to a person with mental illness unless there is written consent from either the person with mental illness; or the spouse or parents or the next of kin,” the Bill reads in part.
It further prohibits sterilisation on any disabled person unless the health professional has explained the implications of the procedure to the person and obtained written consent.
“A health professional contravening the law is liable to five years imprisonment or a fine of Sh2 million or both,” it notes.