KAMPALA – When Mariam started experiencing labour pains at home, she reached for a Boda Boda motorcycle for the nearest hospital.
Although with hearing and speech disability, the expectant Mariam knew her time to deliver had come.
But on arrival at Mbale regional referral maternity ward, she was a withdrawn woman.
And because she had a speech and hearing disability, she had no way of communicating either with the midwife on duty or other nurses making rounds at the maternity ward.
“I just sat there alone. I looked isolated and I did not even have anybody attending to me even when I was visibly in pain,” she said through her interpreter, her mother.
“I was in a lot of pain but nobody understood this, I made signs to the midwife to come and attend to me, but she did not understand, until I started bleeding,” Mariam added.
Although her mother arrived at the hospital after two hours of waiting to attend to her, Mariam stands out lucky because her mother communicated to the midwives to attend to her.
Mariam is not alone, there are many expectant disabled women/ girls who have gone to hospitals to deliver but have found problems in communicating with the midwives/nurses because the later don’t understand sign language and therefore can’t communicate with the disabled.
Many disabled women recount how they were mistakenly told to go home and wait, before giving birth along the way or even in the villages with assistance from Traditional birth attendants.
Many women/ girls who have a speech and hearing disability say that they are usually not understood by nurses/midwives and are often discriminated during pregnancy, childbirth and early motherhood.
Mariam’s mother says deaf and mute expectant mothers have traumatic experiences because they feel out of control and that some decisions and actions at hospitals are made without their consent.
Dr Muhammed Mulongo says that it is frightening that anybody without the means of communicating to those disabled in speech and hearing is made to be in charge of delivering them.
He explained that patients disabled in speech and hearing more than others, need continuity of care in one to one clinic nursing, and to be seen by the same doctor each visit, so as to develop sufficient rapport, confidence and skills in communication.
“When the patient comes to the clinic she needs a companion who hears normally so that the patient responds when her name is called but it is surprising how some of these simple things can be missed in the provision list of a hospital,” said Dr Mulongo.
“There’s not always an interpreter available and so you have to go through different factors like positioning, lighting for easy understanding,” he added.
Ms Sarah Mayumba, the director Mbale School of nursing and midwifery says although communication in antenatal care is so crucial, many schools that train midwives and nurses don’t cater for sign language to give assistance to the disabled.
“Childbirth in Uganda has become more medicalised, and women with disabilities are at risk of being viewed through a medical lens solely because of their particular disability and there is need to train medical workers in sign language,” said Ms Mayumba, a former director of Jinja School of nursing.
Mr Hannington Bakumba, the education officer in charge of special needs at Mbale district said there is no Nurses/midwifery institution in Uganda teaching sign language which puts the lives of the expectant disabled mothers at risk.
He explained that although the policy is clear that all institutions should provide for sign language in order to have an inclusive education, institutions in the country are yet to adhere to this.
“And this explains why expectant women/ girls with hearing and speech impairment find difficulties in delivering in government health facilities but seek deliveries at Traditional Birth Attendants,” said Mr Bakumba.
Mr James Gyabi, a lawyer and advocate of high court says that access to health care without barriers is a clearly defined right of people with disabilities as stated by the UN Convention on the Rights of People with Disabilities.
“The hardest thing is the lack of information and failure by nurses/midwives to understand the disabled becomes an emergency at hospitals that requires attention urgently,” says Mr Gyabi.
Mr Anthony Oleja Enyogu, a disability specialist says the situation Mariam goes through at the hospital necessitates provision of information on the challenges facing women with disabilities in accessing health services during pregnancy, childbirth and early motherhood in Uganda.
“Acceptability, relating to disability awareness and training for health professionals particularly in use of basic sign language should be a must for health professionals to provide better services for the disabled expectant women,” said Mr Oleja of Development Pathways Ltd.
Dr John Nyamu an executive director/Gynecologist Reproductive Health Services in Nairobi, Kenya says he has seen mothers with intellectual disabilities or mental health difficulties, in particular, often separated from their children against their will, whether or not there is any evidence of potential harm or neglect
“Even when there is teaching of sign language in some training institutions in Kenya, evidence suggests that society has, in many instances, undervalued women with disabilities and the care of women with all types of disabilities shows a history of discrimination,” said D. Nyamu.
A review of the salient international literature relating to the care of women with all types of disabilities shows a history of discrimination.
Dr Paul Ebong a lecturer at Kyambogo University says that barriers for women with physical disabilities are found in relation to: accessibility, related to the location and models of care, difficulties in transport and moving around the hospitals and accommodation.
“And to be inclusive, there is need to address the difficulties with communication acceptability, in terms of lack of knowledge and negative attitudes and behaviours from everyone,” said Dr Emong, a don at Kyambogo who doubles as the board chairman CDLP.
He explained that barriers for women with sensory impairments are found in relation to: accessibility, which focuses mainly on the difficulties of orientation to the health care setting, completing registration forms, locating a seat in the waiting area, and realising when to go into the examination room.
“Access to health care without barriers is a clearly defined right of people with disabilities as stated by the UN Convention on the Rights of People with Disabilities and so Pregnancy, labor and delivery are physiological but distressful situations that require loving care and patience in communication as essential for all patients in labor,” said Dr Ebong.
He said there is need to improve access to reproductive and sexual health services for women with disabilities in Uganda, as well as the need for disability awareness training among health professionals.
He added that since communication is key to understanding patients, there is need for doctors, nurses, midwives to learn sign language as this will ensure effectiveness in communicating with hearing impaired patients to better understand their needs and wants.
Ms Sarah Opendi, the state minister of health said people’s attitudes towards disability are improving even when the number of inequalities for women with disabilities still exists.
She said government has embraced inclusive Education and is evidently committed to bringing about disability inclusion at every level of Education and that there is even affirmative action on admission of students with disabilities to public universities.
She explained that ministry of health has put emphasis on improving the care services for women with disabilities attempting to access health care during pregnancy, childbirth and early motherhood.
“Actually there is a need for comprehensive policy development and planning in consultation with women with disabilities to provide an improved response to the maternity service needs,” Ms Opendi said.
She revealed that government is also encouraging Universities to start bachelor degrees in science in speech and language therapy to cater for those disabled in speech.
She explained that the ministry’s target is to improve access to health care, such as providing powerful and visually accessible communication through the use of sign language, the implementation of important communication technologies, and cultural awareness trainings for health professionals.