Healthcare barriers that women with disabilities face

Lucy Mulombi has memories of a series of stinging words that she got from nurses in the course of carrying her first pregnancy. The words cut deep to this day. Most of the nurses she interacted with gave her double doses of stigma. First, they wondered how in the world a physically challenged woman can be impregnated. And two, why the woman in question opted to deliver vaginally and not via caesarian section.

“Men have no sympathy, why have they made this one pregnant,” she recalls hearing a nurse ask her colleague.

Lucy tells Healthy Nation that as the nurse uttered those discriminatory words, she insisted that she wasn’t comfortable attending to her in the guise that her pregnancy was ‘too complicated’.

Lucy went to three health facilities, but the stigma from the health care providers made her stop going to the hospital.

 “I attended only three antenatal clinics and these were in three different facilities and vowed never to go back until I was ready to give birth. I was not ready for the abuse and at some point I contemplated an abortion,” she says.

On the day of delivery, she felt the contractions while still at home but managed to go to the hospital in time.

At the hospital, Lucy says the doctor did not examine her, but just concluded by looking at her that her delivery was too complicated and she had to undergo a caesarean section.

“All the doctor saw was a pregnant woman on a wheelchair and made a conclusion of how complicated my delivery would be. I remember the doctor signalling to his colleagues that the theatre room be urgently prepared for as far as he knew, I wasn’t able to push. I was afraid,” she says.

As the nurses were preparing the operating room, she had felt as though the baby was already on its way out. 

 “I signalled the doctor that I wanted to give birth vaginally, I had the energy to push. It was quite a tussle to get on the delivery bed because of my weight. No one was able to lift me,” she says.

“I delivered on the floor, vaginally, and it was successful,” she says.

Lucy, who was then just 20 years old when she had her firstborn, was later told by the nurses not to have another child.

 “Can you imagine the struggle to move around the hospital on a wheelchair, sometimes the floor is too slippery and a pregnant woman risks falling down,” she says.

During the Women Deliver Conference held in Kigali, Rwanda last month, Lucy told Healthy Nation there is an assumption that disabled women should not express affection, be loved or give birth.

“The stigma in hospitals is evident. Most people who are like me are afraid of having a social life and even seeking access to health care, creating an avoidable barrier,” she says.

Her experience drives her passion for advocating for the rights of pregnant women who have different disabilities.

 She is the founder of the Kakamega County Disability Caucus. She enlightens other women  with disabilities on what they should expect when they go to health facilities . She raises awareness about the women giving birth when they can and sometimes helps individual women in a personal capacity.

Now a mother of three, she uses her platform to encourage women with special needs to live a full life just like other women.

“When hospitals will have delivery rooms designated just for women with disabilities, I will have reached my goal and will be at peace,” she says.

For Naomi Masakhwe, 25, she was born blind.

She is one of the expectant mothers living with disabilities in Bumula, Bungoma County.

She tells Healthy Nation that she has opted for the services of traditional birth attendants because of the frustrations she has encountered in local health facilities.

“I am eight months pregnant and I am totally blind. I can testify that the country does not have trained specialists who can assist us when we visit health centres.” 

She says women with disabilities do not get the treatment they deserve, making facility-based processes tedious and painful. “It is evident that most Kenyan hospitals and dispensaries have no facilities like special beds for patients who cannot walk,” she says, adding that she cannot read the prescription given by doctors as it is not written in braille.

“Health workers are unable to write prescriptions in braille as they lack proper training. We struggle to follow prescriptions as we can’t see or read whatever instructions they give and so I get confused on how I am supposed to take my medication.”

Healthy Nation further established that most of the women living with disabilities in Bungoma have no access to family planning services. And even the few who seek services tend not to get help, especially those who are dumb and deaf, as hospitals have no sign language interpreters.

Lucy and Naomi’s encounters are not unique to Kenya alone, the stigma cuts across the globe.

Gertrude Oforiwa of the Sightsavers’ Global Advocacy lost her eyesight when she was in her teenage years. She hates the stare of people with judging eyes.

“As a blind person, you can imagine, instead of the healthcare worker attending to me, they talk to my assistant about my issues and they would not even listen when I try to speak. I feel like they believe I don’t have a right to express myself,” she says.

At the pharmacy, she tells Healthy Nation, prescriptions are given in writing without considering that a blind person cannot see what is written on the paper.

She is sad that beds in most facilities do not cater for the needs of people living with disabilities.

“I remember when I went to one of the facilities to be examined, the nurse insisted that I climb onto a bed that I could not even see,” Getrude, who is also the chair of the United Nations Committee on the Rights of Persons with Disabilities, says.

Like Lucy, a healthcare worker also told her not to be pregnant again and she kept wondering why she was told that.

Olivia Mutavi, a 35-year-old blind woman , says she realised that she was on a 10-year contraceptive plan that was done without her consent.

“In 2015, I had my first pregnancy. I fell and miscarried when the baby was 24 weeks. I got pregnant again after one year and this time I got a helper and carried my baby to term,” she says.

With the help of a walking stick, Olivia would go to a nearby health centre for her clinic visits. Though some of the nurses were harsh to her, others were friendly and would consider helping her around.

However, she is not sure at what point and at which hospital she was placed on a family planning method that was to last for 10 years, without her consent.

“I realised in 2019 when I was trying to conceive my second baby that I had the birth control method on. I could not really tell which hospital did that to me. I had it removed and after four months, I got my second baby, who is turning four years old in September.

“When I had my baby, nurses told me not to get pregnant again and they insisted that it was too much work to me and even to them and that I  should consider not having babies in future.”

“I have never spoken about this and I am glad you brought up this topic. Disabled or blind or deaf women are not lesser women, they deserve to be treated well. If today I decide to give birth to as many children as I want, please allow me to. If I decide to have my birth control method on, please allow me to but do not make such decision for us and implement them because you feel we are lesser people,” says Olivia.

The four are just a representation of millions of women living with disabilities in the world who are often stereotyped as incapable of controlling their sexual impulses and lacking the capacity to care for their children.

According to Kenya’s 2019 census, about 0.9 million Kenyans live with some form of disability, with women being more at 2.5 per cent compared to men at 1.9 per cent.

Most of them are living in rural than urban areas, with prevalence rates by residence showing that 2.6 per cent (0.7 million) of people in rural areas and 1.4 per cent (0.2 million) of people in urban areas have a disability. Getrude says people with disability are still considered outcasts and treated like lesser people.

Most hospitals do not have sign language interpreters hence affecting how deaf people get services in most facilities in the country.

“If the deaf ones are not lucky enough to be accompanied by someone, what they are expressing and the services that are normally given is not what they require,” says Getrude..

Lucy advises that disability care be mainstreamed in all health care facilities and sign language be incorporated into the curriculum of service providers so that they are able to communicate and attend to the special group better.

She adds that disability customer care desks should be placed in every facility.

“At the global level, we are using the conventional rights of persons with disability, provisions that are focusing on women's and girls' health stipulating sexual and reproductive health.”

Lucy, Getrude and Olivia believe that there is a need to train healthcare workers on how to provide better, equitable and respectful health services for people with disabilities.

“We can speak today for the millions of disabled persons but many of them are afraid to go to hospital. If they get sick, they would rather die at home because of how they are treated. We must change and see them as people and not disabled,” says Lucy.

According to the World Health Organization (WHO), persons living with disabilities are identified in the new Convention on the Rights of Persons with Disabilities as “those who have long-term physical, mental, intellectual, or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others.

The international health agency indicates that inaccessibility to health services for persons with disabilities is hindered by several reasons including physical barriers, the lack of disability-related clinical services and stigma and discrimination.

Some of the challenges faced by persons living with disabilities as indicated by WHO are lack of physical access, ramps, adapted examination tables, lack of materials in braille, healthcare providers’ negative attitudes and lack of funding and health insurance. These factors hinder access to healthcare.

The 61st United Nations General Assembly adopted the Convention on the Rights of Persons with Disabilities in 2006, which entered into force in 2008. It negotiated and adopted international human rights that many countries, including Kenya, signed.

However, despite signing, implementation of the rights of persons with disabilities in all relevant domains such as access to health and sexual and reproductive health (SRH) services and protection have not been implemented by countries.

It indicated that it was important for countries and the international community to place emphasis on the rights of persons with disabilities. Article 9 of the convention calls for accessibility, including access to medical facilities and information, with Article 23 calling on states and government to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, including in the areas of family planning, fertility and family life.

Article 25 on the other hand requires that states ensure equal access to health services for persons with disabilities, with specific mention of SRH and population-based public health programmes.

“The Convention is a legally binding instrument once ratified by a country. States parties are then required to ensure that all laws, policies and programmes comply with its provisions. In particular, Articles 23 and 25 require specific attention to the issues of persons with disabilities in matters of SRH and reproductive rights,” says WHO.

Additional reporting by Jesse Chenge