The struggle for dignified Maternal Health for Malawi’s pregnant and disabled

Twelve out of every 100 Malawians aged five and older have a disability. For pregnant women, it means as Josephine Chinele and Chisomo Ngulube writes.

BLANTYRE, Malawi – When Lynes Manduwa miscarried, nurses in the gynaecology ward at Queen Elizabeth Central Hospital (QECH) ganged up and confronted her husband.

“They confronted him for impregnating me [a woman with disabilities] and blamed him for the miscarriage, which was actually due to the usual biological reasons, which even women without disabilities would also experience,” she recalls.

Twelve out of every 100 Malawians aged five and older have a disability, according to Malawi’s 2018 Population and Housing Census. 

“I’m certain they do this and other awful things to women with disabilities seeking maternal health care. I lost a colleague who tried to deliver by herself at home because she was mistreated in her previous hospital visit,” claims 58-year-old Manduwa, who has a mobility impairment and uses clutches and a wheelchair interchangeably.

Her suspicion derives from what she has experienced at antenatal clinics during all her four pregnancies (including the miscarriage).

“I was worried about the reception at every clinic every day. I was always told to wait for the doctor. They [nurses] considered me a special case. Everyone would be attended to by the midwife on duty except me. The doctor would come later on after their ward rounds,” tells Manduwa, who had Caesarean Sections for her three surviving children.

“It feels embarrassing to sometimes have nurses call each other to discuss your issues openly among themselves just because they are dealing with a person with disabilities,” states Manduwa, herself a disability rights advocate, revealing that it’s hard for women with disabilities to deliver with dignity at public health facilities.

Lynes Manduwa says health workers berated her husband for impregnating a disabled woman after she lost a baby.

She says there is a big gap in Sexual Reproductive Health (SRH) justice for women like her, attributing it to myths that women with disabilities have a different biological makeup.

There is a lack of special needs designated washrooms and labour wards, making it hard for women with disabilities to freely use the facilities. The facilities rely on the women’s guardians to assist them around, in the process, compromising their privacy.

“The labour ward is almost inaccessible for us, there is a need for functional adjustable beds. Ambulances are also inaccessible. All these factors leave our privacy compromised,” Manduwa says.

Language barriers

For women with hearing and speech impairment, such as Fanny Malemia, communication challenges with health personnel have had drastic consequences.

“I lost a three month old pregnancy due to poor communication with health workers,” reveals the 29-year-old Blantyre resident that we interviewed through a sign language interpreter.

While pregnant in 2018, she experienced bleeding and abdominal pain. But due to poor communication, health workers at a Zingwangwa Health Centre failed to decipher what she was really trying to say, until a friend accompanied her to the referral Queen Elizabeth Central Hospital where a scan revealed she had an ectopic pregnancy. This is a life threateningpregnancy condition. 

“The fallopian tube had decomposed, and I had an emergency surgery,” she looks away, fighting a tear, distressed by the memory of her loss.

Fanny Malemia had an ectopic pregnancy, but it was not picked up until very late because of her struggle to communicate with health workers.

Malemia recollects: “I endured a double psychological battle. This loss also disturbed my relationship with my husband (…) until I became pregnant again a year later.”

Unfortunately, none of her female friends could effectively communicate with health personnel, so a sign language interpreter from her local Living Waters Church (LWC) would accompany her and the husband, who is also deaf on antenatal visits.

“I regarded it as a calling to help Malemia through this journey. She was lucky, but I noted a lot of suffering for women with disabilities at our public health facilities,” says Bishop Emmanuel Zalira.

While the bishop admitted to being “highly uncomfortable being among women, mostly chatting about their sexuality issues and singing safe motherhood songs”, he could not leave Malemia without an interpreter, as “women with disabilities are likely to get the wrong treatment.” 

The Malawi National Association for the Deaf (MANAD) says miscommunication between health workers and their members are very common and worrying.

MANAD Executive Director Bryson Chimenya says lack of sign language interpreters in health facilities makes it difficult for women with hearing impairments to communicate with health personnel.

“Deaf women face numerous challenges. Healthcare professionals display unfavourable attitudes towards them. Just recently, one woman [having hearing impairments] was slapped during labour because the nurses and the patient couldn’t communicate,” he says.

No specialised training

The Midwives Association of Malawi (MAM) says it’s sad that women like Manduwa and Malemia have allegedly endured such treatment. It says the association’s professional vow and calling is to offer comprehensive midwifery care without discrimination, emphasising that women with disabilities deserve the best just like anyone else.

“At any given interaction opportunity and through continued professional development sessions, we repeatedly remind our members of the need for respectful maternity care,” MAM President Keith Lipato said.

Acknowledging that inadequate facilities compromise care for women with disabilities in public hospitals, Lipato says asides absence of disability friendly infrastructure, midwives do not have special training to care for those with speech and hearing disabilities among other disabilities.

“The curriculum needs to have content on caring for patients with disabilities to prepare the midwives,” he suggests, urging women with disabilities to report any ill-treatment to MAM.

Kamuzu University of Health Sciences (KUHes), Malawi’s major medical training institution, admits to the absence of specialised training on handling persons with disabilities, stating that some surface content is covered in their four-year nursing programmes.

No official complaints 

QECH, a central hospital that treats around 400,000 patients annually, says it has never received any complaint about discrimination or mistreatment based on one’s disability. 

“We are open to hearing diverse views on how we can improve the care we offer to our patients. We would be happy to hear from any section that is willing to help us make the hospital environment more responsive to their specific needs,” says QECH Director, Dr Kelvin Mponda.

If a patient and provider cannot communicate, he says, it is within the medical ethical confines to have a family member, whom the patient is comfortable with to help fill the gap to ensure appropriate medical care.

“Abusing patients in any form doesn’t reflect the position of QECH towards any section of the society, if proof can be provided, this is a punishable offence,” he says.

Simon Munde, executive director of the Federation of People with Disabilities in Malawi (FEDOMA), an umbrella of organisations of persons with different disabilities, says there that many survivors of poor treatment opt to suffer in silence.

“It’s not uncommon for  health personnel to express their disappointments or shock that a woman with disability fell pregnant. It’s sometimes considered as a sign of not being considerate to impregnate a woman with a disability,” added Munde.

No specialised health workers

Despite international commitments, we have established that Malawi has no specialised health care workers, instead, the responsibility is left with unqualified guardians, tasked with the interpreter and caring responsibilities of pregnant women with disabilities. 

Doreen Ali, Director of Reproductive Health in the Ministry of Health (MoH), admits the lack of trained health care workers to communicate with speech and hearing impairment women seeking maternal care.

She acknowledges challenges that women with disabilities face in accessing maternal health services, stating that MoH is working on a strategy to strengthen communication with such women. 

Director of Reproductive Health in the Ministry of Health (MoH), Doreen Ali

Ali reveals that MoH’s department of policy and planning is currently working on the establishment of special needs health workers. 

She says MoH intends to review health workforce curricula to enhance a human-rights based and intersectional approach to disability, including psychosocial, intellectual and cognitive disability, to address stigma, stereotyping, and discrimination in health service delivery.

“Health workers will be trained through the pre-service curriculum to get prepared and have the skills when providing maternal services,” she says.

The MoH, through the reproductive health department, has developed the obstetric protocols for the management of emergencies like ectopic pregnancies and bleeding. These  provide the information for health care workers to follow when managing all patients with bleeding or ectopic pregnancy.

“Currently health workers rely on guardians for communication since they are yet to be trained in sign language,” says Ali.

Policy exclusions

At the end of the National Disability Mainstreaming Strategy and Implementation Plan (NDMS & IP) 2018 – 2023, the policy failed to achieve its strategic goal of attaining the highest attainable standard of health by persons with disabilities.

This is despite the document acknowledging that persons with disabilities have comparatively limited access to health services due to critical shortage of human resource, especially occupational therapists, physiotherapists, dermatologists, ophthalmologists, speech therapists, medical social workers and medical rehabilitation technicians (audiologists, orthopaedic technologists).

Sexual and Reproductive Health Justice Expert Dr Godfrey Kangaude

The NDMS & IP also admits to the inaccessibility of health infrastructure to persons with mobility and visual challenges, communication challenges and negative attitudes towards persons with disabilities on the part of some medical staff, especially in addressing reproductive health needs for women with disabilities. 

Sexual and Reproductive Health Justice Expert Dr Godfrey Kangaude says every country should ensure ‘reasonable accommodation’ to ensure that persons with disabilities have the same quality of Sexual Reproductive Health and Rights (SRHR) services as persons without disabilities. 

Kangaude  says it’s unethical for health care workers to say demeaning words questioning who and why they impregnated a disabled person (like in Manduwa’s case), “This is  a violation of a persons’ dignity and autonomy, to be considered as not worthy to reproduce….women with disabilities also want to be pregnant and they shouldn’t be derided for it. ”

Kangaude flags that knowledge is powerful in shifting attitudes and helping people appreciate alternative and better ways of doing things, which aligns with respect for other people.

Holding MoH to account

Manduwa says FEDOMA has on several occasions tried to engage MoH on this, but nothing has changed.

“We normally advocate with authorities to ensure disability inclusive health service delivery in all health facilities. With support from Sight Savers and UK Aid Match, we have trained health workers in gender and disability mainstreaming,” Munde says.

But the Malawi Council for Disability Affairs (MACODA) expressed ignorance about any specific initiatives being undertaken by the MoH. 

The organisation said that it is actively engaging MoH on its obligations under the newly enacted Malawi Persons with Disabilities Act of 2024. Section 25 of the Act mandates and obliges health institutions to provide accessible health services tailored to the specific needs of persons with disabilities seeking healthcare. It further prohibits any form of discrimination in the provision of health care and rehabilitation services to persons with disabilities.

Protecting rights

MACODA Public Relations Officer Harriet Kachimanga says the organisation is committed to promoting and protecting the rights of persons with disabilities, including their SRH rights. 

MACODA Public Relations Officer Harriet Kachimanga

“We believe that accessible maternal health services are vital for ensuring that women with disabilities receive the care and support they need during pregnancy and childbirth,” she says pledging her organisation’s continuous dialogue with MoH on the newly enacted Act.

Malawi’s policies have not been in accordance with the international agreements she is party to, such as the  Convention of the Rights of Persons with Disabilities (UN CRPD)-an international agreement protecting and protecting human rights of people with disabilities and the African Disability Protocol– the legal framework based on which African Union member states are expected to formulate disability laws and policies to promote disability rights in their countries.

The Southern Africa Federation of the Disabled (SAFOD), an umbrella body for 16 organisations across the region, observes that the health status of persons with disabilities is often poorer than that of the general population due to the inequalities accessing healthcare services.

SAFOD Director-General Mussa Chiwaula

The organisation says, among others, women with disabilities experience stigma and discrimination owing to stereotypes, misconceptions regarding their sexuality such as asexuality, hyper sexuality, and possibilities of having unsafe deliveries, inability to carry the baby to term and inability to care for the new born.

“This is a serious problem in Africa. The seriousness of this problem is that it can lead to risks of complications, maternal morbidity and mortality for pregnant women with disabilities. These women like everyone else deserve to be treated with dignity and respect,” says SAFOD Director General Mussa Chiwaula.

He says African governments and health ministries have a responsibility to ensure an inclusive health care system for persons with disabilities, suggesting that other partners such as SAFOD, Non-Governmental Organisations, development partners, academia, and the media need to hold the government accountable by lobbying and advocating for an inclusive health care system.

SAFOD strongly believes every person has the right to accessible, affordable, and acceptable quality health care service information including SRH rights. 

The World Health Organisation says, an estimated 6.2 percent of the one billion people with disabilities globally are women. 

Manduwa, Malemia and many other women with disabilities look forward to discrimination-free maternity experience at public health facilities.

This story was supported by the Pulitzer Center through the Underreported stories in Africa project. This version of the article first appeared on Health Policy Watch.