June 3, 2014
KAMPALA, UGANDA – After nine months of pregnancy, Imelda Twikirize, a disabled woman, was eager to have her first baby. She checked in at the labor ward of Mulago National Referral Hospital in Kampala, Uganda’s capital, in June 2013 to deliver the baby.
Twikirize says the nurses’ unkindness toward her during her labor was shocking.
“The nurse who was supposed to work on me shouted at me and used derogatory language,” she says. “[She said] that I should not express my pain because I accepted to get pregnant when I knew I had a disability.”
A childhood bout of polio left both of Twikirize’s legs paralyzed. Twikirize, who uses a wheelchair, says all of the beds in the labor ward were too high for her.
A nurse shouted at Twikirize to climb up on her bed, asking how she managed to climb on a bed to get pregnant if she was not able to climb onto a hospital bed, she says.
“The bed was raised,” she says. “My young sister had to carry me to the bed. I felt bad.”
While Twikirize was in labor, the senior nursing officer on duty came in and directed the attending nurses to take her to an operating room. The nurses had prepared her for a vaginal delivery, but the senior officer told them they should have known she would need a cesarean section because of her disability.
Twikirize, now the proud mother of a 10-month-old girl, is one of many disabled women who have had to brave difficult conditions to give birth in Ugandan public hospitals.
Disabled pregnant women in Uganda say they have a hard time accessing public health care because of nurses’ negative attitude toward them and the lack of ramps, doorways and beds designed to accommodate their needs. Private hospitals offer better services and facilities, but staff acknowledge that many disabled women cannot afford to deliver at them. The government this month will begin constructing a women’s hospital that will include facilities to accommodate the special needs of pregnant women with disabilities.
On average, 80 women deliver at Mulago National Referral Hospital, Uganda’s largest public hospital, every day, says Sarah Sewanyana, a senior nursing officer who works in the hospital’s maternity ward. Each day, at least one disabled mother delivers at the hospital.
Nationally, there were about 363,500 deliveries at Uganda’s public and private hospitals and community health centers last year, according to the Annual Health Sector Performance Report of 2012/2013. The report does not track deliveries by disabled mothers.
Uganda’s 2009 national health policy and 2010 health sector strategic investment plan state that the government should ensure high-quality health services are available and accessible to all, including vulnerable and marginalized populations such as people with disabilities.
Mulago Hospital provides wheelchairs to disabled mothers for use during their stay, Sewanyana says. It uses ambulances to transport pregnant mothers from one wing of the labor ward to the other.
But Sewanyana acknowledges that maternal health care facilities at the hospital were made for general patients and do not accommodate the needs of special groups such as people with disabilities.
The hospital does not have ramps to ease movement for pregnant women in wheelchairs, Sewanyana says. The hospital’s elevators are often congested, and sometimes they do not work. Women who use wheelchairs must crawl into bathrooms because the doorways are so narrow.
“The toilets are not that hygienic and not big enough for disabled mothers who may need to access them in their wheelchairs, some of which are big,” Sewanyana says.
In addition, the beds are too high for disabled mothers, she says.
“Here in Mulago and in other government health facilities, we have normal beds,” she says, “so the disabled women have to climb up or are helped by a caretaker, usually a relative, to get to the bed.”
Sometimes there are not enough beds in the labor ward, and mothers – both disabled and non-disabled – have to deliver on mattresses spread on the floor, she says.
Staff at the hospital are not trained to communicate with mothers who are deaf or mute, Sewanyana says.
“We have communication problems,” she says. “We depend on relatives and attendants to communicate.”
She admits that some staff members at the hospital have a negative attitude toward disabled mothers. They use unfriendly language and avoid attending to them, she says. But she considers this a personality issue and assures that not all health workers are like that. Some are kind and helpful to all patients.
Disabled women also complain of mistreatment at lower-level public hospitals.
Aidah Nakyanzi, 25, gave birth at the government-owned Makindye Health Centre 3 in Kampala in March 2013. She underwent a C-section because she is about 4 feet 5 inches tall and has a hunchback, she says. She does not know the name of her condition.
The staff at the health center paid more attention to mothers who were not disabled, she says.
“The midwives were reluctant to work on me,” she says. “They looked at me in some way as a problem person.”
Beds were too high and not disability-friendly, she says. A relative had to help her get up on her bed.
Paula Niiwe, the incharge, or chief administrator, of Makindye Health Centre 3, says the treatment Nakyanzi reported is contrary to the health center’s standards.
“It is difficult to ascertain that someone came to this health facility and was not given humane treatment,” she says. “Human beings act differently at different times and with different people, so maybe one of us may not have treated a client with respect, but normally we try to give all our clients fair treatment. We are here to serve them.”
Aidah Lukwago, a program officer in charge of advocacy and networking at the National Union of Women with Disabilities of Uganda, says that women with physical disabilities have challenges accessing maternal health care at various public health facilities.
“Imagine a crawling mother in a dirty toilet,” she says, referring to facilities’ bathrooms.
Lukwago also says nurses are rude to disabled mothers because they do not expect them to get pregnant.
“They think being disabled means everything being dysfunctional,” Lukwago says. “They think these disabled women are asexual.”
Because of this mistreatment, some disabled mothers resort to delivering at home or with the assistance of traditional birth attendants, Lukwago says. This puts them at a risk of dying during delivery if complications arise.
Rukia Nakamatte Mbaziira, the communications officer for the Ministry of Health, admits that facilities in public hospitals pose barriers to maternity patients with disabilities. The ministry is striving to improve them, she says.
She is not aware of staff in public health facilities treating patients disrespectfully, she says. She asks patients to report hostile treatment.
“If it is true, it is unfortunate and regrettable,” she says. “The patients should help alert us, and we discipline them.”
Juliet Kushaba, a 28-year-old graduate student in gender and women’s studies at Makerere University who is not disabled, says treatment is fair among patients. When she delivered her child at government-owned Mengo Hospital in Kampala, she did not witness disabled women being treated differently from others.
“Disabled mothers may have challenges due to their disability, but we all undergo the same pain while delivering,” Kushaba says. “In a hospital where I delivered, they got the same treatment as everyone else.”
Some private hospitals offer disability-friendly facilities, but services are costly.
Mackline Birungi, an administrator with Busingye Medical Centre, a private maternity hospital in Kampala, says the beds there can be raised or lowered, making them convenient for both disabled and non-disabled mothers. The hospital also has special rooms for mothers with disabilities.
“Our staff have to be polite and receive all clients no matter their condition,” she says.
Evas Nyamwija, a 27-year-old disabled mother, delivered her two children at the hospital. She walks with a cane because one of her legs is shorter than the other.
The nurses were friendly, she says.
“I was advised that they offer quality services,” Nyamwija says. “I have no complaint. I was treated well.”
Lukwago says that unlike in public hospitals, mothers are treated well in private hospitals because for-profit facilities do not want to lose customers.
But Birungi says that few disabled women can afford to deliver at the private hospital where she works. The cost of delivering at Busingye Medical Centre ranges from 2.2 million shillings ($860) to 3.8 million shillings ($1,500), depending on whether a woman delivers vaginally or via C-section.
At public health facilities, maternity services are free, Sewanyana says. Each new mother also receives a care package.
Twikirize says she will still deliver at Mulago Hospital in the future, even though nurses are unkind, because maternity services are free. Nakyanzi says she does not plan to have another baby because she wants only one child.
In June, the Ministry of Health will begin constructing a women’s hospital in the Mulago Hospital complex that will address all needs of expectant mothers, Nakamatte says. The ministry will equip a section of the maternal and neonatal hospital to accommodate maternity patients with disabilities.
“Funding of $33 million from the Islamic Development Bank was obtained for this purpose,” Nakamatte says.
The hospital received the funds as a loan.
“This will go a long way in improving maternal and child services at Mulago Hospital,” Nakamatte says.
The ministry plans train health care workers in sign language starting in July. It also plans to ensure that all public health care buildings have ramps. The ministry distributed beds suitable for disabled people to some public health facilities in 2013, Nakamatte says.
Josephine Ogwang, the manager for maternity wards in Mulago Hospital, confirmed that the hospital received more than 20 adjustable beds in April 2014 that are suitable for disabled people.
Lukwago says the National Union of Women with Disabilities of Uganda is working with the Ministry of Health to ensure that people with disabilities can use restrooms in public health centers.
“We are proposing that if a health facility has at least three latrines, one should be reserved for disabled people,” she says.
The organization also asks the Ministry of Health to create a column for people with disabilities in the registers at public health facilities, Lukwago says. Establishing a record of how many disabled people access health services will allow for better planning.
GPJ translated some interviews from Luganda.