Coping with pregnancy when disabled
WHILE motherhood is often celebrated as a positive experience universally, Musa Sibanda, a woman from Bulawayo, was far from being happy on the day she gave birth to her first child.
The woman cut a lonely figure in the maternity ward at Mpilo Central Hospital while other new mothers welcomed their newborn babies with smiles and chuckles.
She had one wish — that the little life in her hands should just die.
Sibanda, who has a speech and hearing impairment, regarded her life as some form of “punishment” from God for nothing seemed to be alright.
Besides her disability, she had tested HIV-positive four years earlier. Wrongly, Sibanda assumed she had transmitted the virus to her baby and was convinced the baby would not make it.
She had flashbacks of the day she took the HIV test and how the post-test counsellor struggled, using rudimentary sign language, to give her tips and advice on living a healthy life despite her HIV status.
The test result was written on a slip for Sibanda to read.
It appeared the counsellor said a lot judging from the movement of her lips complemented, in vain, with hand gestures. But it was the written “message” on the slip that Sibanda finally understood after a lengthy counselling session.
“I was convinced my newborn child was HIV positive since I was also positive,” Sibanda said. “When nurses discharged me, I left Mpilo Central Hospital maternity ward prepared to spend a few years with the little one, suspecting she would die before reaching five.”
Whenever the baby fell sick, Sibanda prepared herself for the worst.
A brave decision to ask a friend who could communicate in sign language to accompany her to the hospital with her daughter paid off.
“After a traumatic four years, I learnt that my daughter was HIV negative,” Sibanda said.
“That day, I learnt of a new concept: the Prevention of Mother To Child Transmission (PMTCT). I was told it was the reason why my child was negative though I was HIV positive.”
While Sibanda’s baby is a healthy normal child, Sibanda had to live for years haunted by the heart-wrenching assumption that her baby was born with the virus. The mother had to wait for years to draw joy from her daughter’s birth.
The good news, it appears, was lost in translation.
With no working knowledge of sign language, staff at the hospital battled to convey the correct message to her at the time of the child’s birth.
Language and communication barriers hinder people with hearing and speech impairment (PWD) especially women who often find themselves stranded when trying to access antenatal care (ANC).
The World Health Organisation (WHO) says the majority of health problems leading to maternal deaths can be prevented, detected and treated by trained health workers during antenatal care visits.
Zimbabwean health workers and professionals are trained in everything else necessary to give quality ANC except Sign Language although the constitution recognises it as one of the country’s official languages.
Chapter 1 subsection 6 (4) of the constitution stipulates that the State must promote and advance the use of all languages used in Zimbabwe, including sign language, and must create conditions for the development of the languages.
“Sign Language is official only on paper. I’ve never come across a nurse who can easily communicate with me. I relied on reading lips during my ANC visits and I know I missed out on a lot of crucial information as the nurses were educating us on safe sex, HIV and Aids, diet, exercise among other topics.
“The reason our health practitioners don’t use Sign Language is the attitude that our government has on PWD. Millions have been used to research on condom use, elections and everything but to date our government hasn’t given us the correct figure of PWD, thus we are as good as non-existent in Zimbabwe,” says Chiedza Phiri from Bulawayo’s Nguboyenja suburb with the assistance of an interpreter.
Bulawayo High Court Judge, Justice Maxwell Takuva, recently ordered the Zimbabwe National Statistics Agency (Zimstat) and the Minister of Finance and Economic Development, Cde Patrick Chinamasa, to release funds to facilitate the full participation of people with disabilities in future population censuses.
Takuva’s judgement followed an application by the Zimbabwe National League for the Blind (ZNLB) suing Zimstat, Minister Chinamasa and his Public Service, Labour and Social Welfare counterpart, Cde Prisca Mupfumira, for allegedly deliberately excluding its members from participating in the 2012 census programme.
Irene Moyo, a wheelchair-bound paraplegic living with HIV, said while her peers suffer due to communication, she experienced discrimination from health workers who seemed to suggest that she should not have children due to her physical disability and HIV status.
“I don’t have a hearing and speech impairment but I met the most discriminatory experience at Mpilo Hospital because of my physical disability. Delivering my third child brought me a lot of trauma,” said Moyo.
Moyo remembers being surrounded by a group of inquisitive and curious midwives who took turns to interrogate her while giving her questioning looks as she sat in her wheelchair.
“I felt like I had committed a sin by falling pregnant while disabled. It was as if PWD have no sexual organs,” Moyo said. “I simply told the nurses that I deserved privacy and that they weren’t special as we were all subjected to the same risks. They slowly walked away accusing me of ingratitude. A disabled pregnant woman is supposed to open up on her sex life in the presence of about 12 nurses and allow them to scrutinize her.”
Moyo says she made up her mind to fight for her rights from that day.
“Up to today I can’t take any discrimination from health personnel who want to dramatise my condition to entertain themselves,” she says.
Community Working Group on Health (CWGH) director, Itai Rusike, says Zimbabwe requires effective communication tools as it moves towards universal healthcare provision.
“Health must have a universal communication strategy so certain sections of our communities aren’t short-changed. We need to closely review our training curriculum and consider the use of sign language, Braille and other languages which are officialised by the Constitution. We need to appreciate the realisation of the right to health enshrined in the constitution. The attitudes we find in hospitals and low morale among practitioners is also a result of poor health financing and prioritisation,” said Rusike.
Dr Bernard Madzima, the director for family health in the Ministry of Health and Child Care, acknowledged the absence of a specific communication strategy for disabled women.
“However, all communication strategies from the Ministry are inclusive as you’ll appreciate that disabilities are wide. Again there’s no discrimination in service provision. However, those with specific needs are accommodated especially those who are difficult to reach because of the nature of the disability.
“Issues of stigma and discrimination can happen. However, the ministry has a programme of training health workers in Disability Awareness aimed at reducing stigma and discrimination.”
Disability HIV & AIDS Trust (DHAT) head of operations Hamida Ismail says women and girls with hearing and speech impairments miss out on information on maternal health due to the communication barrier and low literacy levels.
“While it’s important to train health practitioners on sign language, there’s a need to ensure the sustenance of the language. It’s crucial to understand that sign language is a language, hence the need to practice it on a regular basis after the training,” she said.
Ismail says failing to provide appropriate information perpetuates maternal mortality among women and girls living with disabilities.