Maternal health care eludes women with disabilities in northern Uganda

Last Updated on: 6th April 2023, 10:10 pm

For many poor women and those with disabilities in northern Uganda, accessing maternal health care remains a nightmare and this is curved out of stigma, discrimination, negligence, ignorance and inaccessible facilities for these under privileged lot. 

Although a number of them bear children, little or nothing at all is being done to provide basic prenatal health services to such women, and worse of all, to those in the remote settings in northern Uganda.

This, however, has combined with a recipe of other factors that makes it very difficult for women with disabilities to receive safe childbearing and child care, assistance both from the health facilities and the community outlets.

Because of the predicament, many of them are forced to have unsafe births, resulting in frequent maternal deaths and other childbirth related health problems.

Six months ago, I lost my friend Mary, a woman with a disability, who died during childbirth. Mary never got to experience motherhood, a role she had been yearning for since she learned she was pregnant. Mary’s life was cut short in her prime for something that could have been prevented and regrettably, she is not the only woman with a disability we have lost in the recent past.

Are women with disabilities getting critical information that helps them with their pregnancy journeys?

After nine months of pregnancy, Nighty Adyero, a woman with disability, was eager to have her first baby. She checked in at the labour ward at Gulu Regional Referral Hospital in Gulu city in June 2012 to deliver her highly prized baby.

Adyero 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.”

The United Nations Convention guarantees persons with disabilities equal rights to reproduction and healthcare access. Similarly, the Sustainable Development Goal (SDG3) targets improvement of the health and well-being of individuals including persons with disabilities.

However, women with disabilities have not been given close attention, particularly in healthcare services.

A nurse shouted at Adyero who found it difficult to climb up on her hospital 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,” Adyero says. “My younger sister had to carry me to the bed. I felt bad.”

While Adyero was in labor, the senior nursing officer on duty came in and directed the attending nurses to take her to an operating room.  “No sooner had they carried me than I delivered safely on the floor,” says Adyero.

Also read: World Health Day 2023: Wary as the nexus between climate change impacts, health becomes apparent

Adyero, now a proud mother of 2 children is one of many women with disabilities who have had to brave difficult conditions to give birth in Ugandan public hospitals.

Adyero’s pains are not different from Annetta Anek, a woman with disability and resident of Alokolum Ngweno Twon ward, Alokolum parish in Gulu city. She conceived her first baby in 2015, and she hoped to deliver at a health facility under care of a trained midwife.

When labor pains hit her during the final hours to deliver, Anek gathered a few belongings and trekked for three miles to Gulu regional referral hospital.

But to her surprise, the expectant young mother was received by a nurse who subjected her to all sorts of demeaning questions, all related to her state of disability.

“The nurse left me on the floor and went to do her own things and I struggled to deliver my first son. By God’s grace, I safely delivered him on the floor without any assistance from the midwife,” recounted Anek.

Anek was struck by the deadly polio virus at a tender age which crippled her, making mobility difficult.

Struggling to hold back tears of a sad memory, she narrates that the midwife shouted at her when she returned, asking: “Why did you deliver alone? Do you want me to lose my job? Why do you want to give birth if you know that you are disabled?”

When she thought that this could have been a one-off incident, fate repeated itself when Anek conceived the second child two years later.

She says that when she went for antenatal care, no one attended to her that she got discouraged to go for subsequent visits.

“I went to the hospital, on one attended to me and later when time for delivery came, I went back to the hospital but I was again mistreated,” disclosed Anek.

“They said climb up the delivery bed. They knew I couldn’t climb the bed, so I silently picked and laid my plastic mat on the floor and delivered my child from there.”

Pregnant women with disabilities in Uganda say they have a hard time accessing public health care because of nurses’ negative attitude toward them and lack of ramps, doorways and beds designed to accommodate their needs.

Private hospitals offer better services and facilities, but staff acknowledge that many women with disabilities cannot afford to deliver at them.

The government has begun constructing women’s hospitals that include facilities to accommodate the special needs of pregnant women with disabilities.

women with disabilities
Widespread concern

Tales and myths are not uncommon among women with disabilities in northern Uganda where accessing maternal health care and other health services in a friendly environment remains a tough task.

Many of the women with disabilities recall encounters of discrimination, negligence and stigma from health workers and lack of sensitization on maternal health and inaccessibility of health facilities’ equipment for safe and convenient delivery.

As a result, many mothers with disabilities end up dying or losing their babies, health officials have admitted.

Yoweri Idiba, the then Acting Gulu district health officer, during a sexual and reproductive health program meeting held on April 26, 2022, confirmed that the institutional maternal mortality ratio in the district was standing at 249 per 100,000 live births.

He said there is low antenatal attendance within the first trimester, standing at about 32%, hence it is difficult to complete Antenatal care (ANC).

Idiba called these figures alarming, pointing out that teenage pregnancy accounts for 27% of all ANC and 11 out of 32 maternal deaths are among teenagers.

He added that women with disabilities needing ANC attendance are very low in the rural areas of northern Uganda. “Quarterly, we see the rise in the reported maternal health deaths in the northern region but there is still not enough that we are doing,” pointed Idiba.

“Therefore, I call upon all stakeholders to join hands and see that the numbers of maternal deaths go down and also work towards improving ANC visits, especially for women with disabilities,” he urged.

In 2010, CEHURD, under the Regional Network for Equity in Health in East and Southern Africa conducted a desk review of the constitutional provisions on the right to health in fourteen countries in the region which included Uganda.

The organization found out that the government of Uganda decentralized its health system as a way of empowering its citizens to participate in the process of development and improve their livelihood in critical sectors such as health.

It says the decentralization of health services created two levels of health sector administration, one at the central government and the second at local government.

The government health policy (GHP) states that health center IIs are to be in every parish to do referrals to Health Center IIIs, which are meant to be in every sub county and health Center IVs serve counties as mini-hospitals with capacity to admit patients and conduct surgery under the care of senior medical officers.

However, many of them are non-functional units due to the lack of beds, water and electricity according to CEHURD findings.

This leaves many women with disabilities struggling to access maternal healthcare contrary to the UN Convention on the Rights of Persons with Disabilities  which requires state parties to recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination.

The convention further mandates the states to provide persons with disabilities with the same range, quality and standard of free or affordable healthcare and programs as provided to other persons, including in the area of sexual and reproductive and population-based public health problems.

Continuous advocacy

In a quest to improve the quality of maternal healthcare received by women with disabilities, Teddy Aciro Luwa, Chairperson of Gulu Women with Disabilities Union (GWDU) has called for continuous advocacy.

“Some health workers judge women with disabilities through their appearance when our fellow women visit the facility and they treat us differently as compared to other women,” she complained.

“We are also doing continuous advocacy for adjustable beds at the different health facilities within Northern Uganda, especially in the districts of Gulu, Amuru, Nwoya, Omoro, and Gulu city among others,” she said.

There are over 8,000 women with disabilities registered as members in the union, however, Denis Lakwonyero Ocen, District councilor representing persons with disabilities in Gulu district has urged the communities to back up the union in advocating for equal treatment of persons with disabilities within the district and region.

“We have to come out as a team, all stakeholders and implementing partners, let’s support this common course to see that persons with disabilities receive equal treatment both at the health centers and in the community,” Ocen said.

In 2020, the government of Uganda passed the Persons with Disabilities Act (2020) based on the human rights model and it uses the same rights for persons with disabilities and establishes the fundamental freedoms and human rights for persons with disabilities.

The new Act also lists a range of impairments and includes several categories that are seen as specific to the Ugandan situation, including “little people” and persons with Albinism. It also allows for medical determination of a disability if necessary.

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