When Rose Katana got married in 2019, her main prayer was to one day give birth to a healthy baby. Being a woman living with a disability, she could not go ahead with her plans of conceiving without consulting a doctor to weigh in on whether there would be any risks.
However, the treatment she received at the health facility she visited in Kilifi County where she lives, her dream of ever holding her own baby faded away right before her eyes away as every healthcare provider she approached seemed to avoid her.
Rose has limb length functional discrepancy or leg length discrepancy (LLD), scientifically referred to as anisomelia, a condition in which one’s legs have a noticeably unequal length.
“We felt pregnancy might put my life in danger and that is why I wanted to first consult a gynaecologist, on the risk factors and whether I could get pregnant or not,” she recounts.
“But the first impression I got me scared of ever seeking sexual and reproductive health services at a public hospital again,” she adds.
Depending on the degree of leg difference, this form of disability can result in various problems, such as knee, hip and ankle complications and back pains, which could cause complications during pregnancy. For that reason, unplanned pregnancy could put Katana’s life at risk, therefore, a doctor’s opinion is highly recommended.
“When I told the nurse what I wanted, she loudly asked while everyone in the lobby listened whether I was married and why my husband had not accompanied me to hospital,” she notes.
Rose says these questions were followed by silent treatment and sneering from the health workers who went on to attend to other patients leaving her unattended.
Fear of victimisation
She says she got tired of waiting and sought to know why the health workers had been ignoring her for hours.
“They told me to my face that women with disabilities are not supposed to get pregnant as they are not expected to have sex,” she notes.
Three years later, Rose says her dream is still alive although she is scared of visiting a public hospital.
“If they treated me the way they did just for seeking advice on reproductive health, how about when I get pregnant and have to deliver in the same hospital? “she poses.
Rose says her eyes are now focused on accumulating enough funds so that she can seek the services at a private hospital where the possibilities of being victimised due to her disability are minimal.
The 28-year-old says she is not the first or only person to be discriminated against while seeking such services as her fellow people with disabilities (PWDs), have similar tales to tell.
Family planning is one of the critical health services for all women, however, for women with disabilities, seeking help on reproductive health matters makes them targets for malice and judgmental remarks by health workers and the society in general.
“When we visit hospitals to inquire about contraceptives or any other sexual related issue, there is always some judgmental looks from the health workers. This scares the majority of women with disabilities (WWD) from seeking this service,” she says.
Peris who represents PWDs in Malindi Sub-County says there is no adequate information on family planning targeting different forms of disabilities.
“This is why you find a lot of misconceptions around family planning, which in return keeps off WWDs from seeking those services,” he says.
Peris further says most of the family planning products are only accessible in major hospitals forcing WWDs to make long, tedious trips to these hospitals in search of services. Also, due to lack of specific assistance, such as lack of sign language interpreters and braille, which can enable communication with the doctor, they are forced to rely on other patients or relatives to convey their needs to the doctor thus denying them doctor-patient right to privacy.
Aside from the judgmental views, information on family planning aimed at persons with disabilities is also scanty, thereby, denying this group the option of being informed about their reproductive health.
Also, most of the hospitals are not disability friendly since they lack wheelchairs for people who may need one, the toilets are also not accessible for PWDs, as well as lack of ramps.
Dissatisfaction with FP services
In Kenya, persons with disabilities make up 2.2 per cent of the Kenyan population, a majority of whom (57 per cent), are women and girls. And according to a United Nations Population Fund (UNFPA) funded assessment conducted by This-Ability organisation on the health workers skills on sexual and reproductive health and disability, despite the major strides being made on the general reproductive health of women, there are major loopholes when it comes to women and girls with disabilities.
The report categorises the barriers to realisation of equal rights of women and girls with disabilities on their right to sexual and reproductive health as cultural, societal stigma, lack of government, physical and financial barriers, lack of privacy and hospital based sign language interpreters, as well as informational obstacles.
A social accountability carried out by Juhdui in two of Kilifi County’s hospitals found out that even though information on family planning was available among people with disabilities, the provision of the services still needed a major overhaul.
The accountability exercise conducted in 2021, included the public’s views on the availability of information on the subject, availability of the family planning services, the quality of provision of counselling and family planning services.
The study focused on Kilifi Hospital, which is at the heart of Kilifi County and Malindi Sub-County hospital, which is also one of the major hospitals in the county.
The study shows the family planning services and information on contraception was available in both hospitals even though longterm family planning methods were not available for people with disabilities at Kilifi,
However, provision of family planning counselling for PWDs was rated fairly at Kilifi Dispensary even though the quality of counselling offered was not satisfactory while Malindi was rated fairly well in providing family-planning related counselling.
Kilifi was further rated as poor on the quality of provision of the actual family planning services as PWDs seeking the services were not satisfied with the health worker’s attitude, lacked privacy and confidentiality while the quality of the services was also not satisfying.
In Malindi hospital, the attitude of the service providers, the privacy and confidentiality of the PWDs was top notch and were generally satisfied with the quality of services even though there were some form of discrimination and inclusivity.
Peris says with the trends in the two hospitals, which have been participating in social accountability for a few years now, the possibility of the situation being dire in other hospitals are very high.
“Our colleagues in the interior parts of the county might be facing more challenges, because there is no one to hold the hospitals accountable,” he says.
Rights to Information and services
Mwaura, a nurse at Kilifi Hospital says the health workers are guided by the code of ethics, which pushes for inclusivity and fair treatment to everyone.
“No sane nurse or health worker should mistreat a person with disability seeking any health services. When one accepts to be a health worker, you accept all the challenges that come with it,” Mary says.
She says their facility management has been at the forefront in changing perceptions and attitude of health workers towards WWDs seeking services or information on family planning and generally on sexual reproductive health.
She says locking out WWDs from accessing such crucial services highly contributes to misinformation and misconceptions on contraceptives.
“Every human being is sexually active and like anyone, women with disabilities have a right to decide on family planning methods. This will ensure they know when to protect themselves from unwanted pregnancies or Sexually Transmitted Infections or when to have children,” she says.
She, however, says the issue starts right from training institutions where health workers are not trained to handle the PWDs, therefore, there is a need to equip medical students with real life skills on inclusively serving PWDs.
On the other hand, Mary says counties also have a role to play in making sexual reproductive health services are accessible to everyone, including PWDs, such as making sure hospitals are accessible to PWDs, such as having ramps or sign language interpreters or assistants who will give PWDs an aiding hand whenever need rises.
Kenya JUHUDI AFRICA country director Evelyn Samba says time to time, the rights of PWDs in seeking reproductive health have been trampled on.
“They are a vulnerable group who are exposed to various risks as they access information and services and there is a need for counties to make deliberate efforts to include PWDs in family planning and other SRH programmes,” she says.
The JUHUDI AFRICA director says one of the vital strategies is for counties to ensure health workers are continuously trained on how to better engage with PWDs, including being trained in sign language, braille and customer service.
Health workers have a duty to know PWDs have self-determination, privacy, respect, and dignity thus need for a change of attitude, which will then provide a safe space for PWDs to demand SRH services.
“County governments should also invest in making health centres accessible to the PWDs, including adding ramps for wheelchair users and other equipment- including examination beds- are accessible to them. Communication materials, including easy-to- understand written or graphic formats must also be provided,” she adds.
On the inclusivity, Samba says Counties should deliberately integrate PWD into ordinary programmes instead of having them separated from programmes targeted at able-bodied individuals.
This will reduce stigma and health worker bias and aim at normalising conversations around people with disability and SRH, which will go a long way to bust myths and misconceptions, as well as reduce judgment in accessing necessary care.
In terms of policy, Samba says PWDs should be incorporated at all levels – from planning to execution of any PWDs targeting programme, which will help counties in identifying the challenges and get recommendation on solutions from the right people.