In various parts of Nigeria, pregnant women with disabilities face challenges in accessing prenatal care within public hospitals. Communicat...
In various parts of Nigeria, pregnant women with disabilities face challenges in accessing prenatal care within public hospitals. Communication issues, indifference, discrimination, and policy shortcomings often prevent them from having a secure and safe experience during motherhood, as reported by JANET OGUNDEPO.
“MyA mother of four, Mrs. Hellen Beyioku-Alase, recalls that her first child was placed very near a sink because they claimed there were no suitable hospital beds, an incident that left a lasting impression on her.
Overjoyed by the two red lines on the pregnancy test that indicated her condition, Beyioku-Alase entered the General Hospital in Kuje, Federal Capital Territory, to enroll for prenatal care.
As a first-time mother, she was keen to follow the advice and care offered by the midwives and doctors.
However, as a Deaf woman, her arrival was met with confused expressions and unwelcoming body language from medical staff who didn't know how to interact with her.
"At the beginning, I wasn't welcomed because of communication and attitude challenges. They didn't know how to assist me in accessing service delivery," Beyioku-Alase said to PUNCH Healthwise.
Each meeting turned into a pointless endeavor. She observed the healthcare professionals' mouths moving and their hands making motions, yet she comprehended nothing as there was no sign language interpreter available.
No attempt was made to document guidelines or seek other methods to convey essential details regarding her pregnancy. Without access to the crucial information needed for her pregnancy experience, Beyioku-
Alase also experienced disregard and received hostile behavior and nonverbal cues.
Consequently, she was excluded. While other pregnant women received guidance on prenatal care, diet, and what to anticipate during childbirth, Beyioku-Alase remained silent, trying to understand as much as she could from brief glances and indifferent signals.
"During my prenatal care, I didn't grasp what they were saying, and no attempts were made to ensure inclusivity. They weren't prepared to support a Deaf individual like me," she remembered.
The effects of this communication failure became evident during the delivery process. In the midst of labor, and unable to comprehend the midwives' directions, Beyioku-Alase endured one of the most delicate phases of her life without adequate support.
"During childbirth, they didn't communicate, clarify the procedure, or try to help me understand, and I wasn't informed when to push. It was very frustrating. My baby almost didn't survive," said the Deaf woman.
Because she was overlooked during antenatal care, there was no arrangement for a sign language interpreter during her childbirth. In a previous interview with The PUNCH, she stated that her husband, despite being able to speak clearly, was also Deaf, which left her without proper assistance in the hospital.
Following the birth of her child, the deaf woman, who has since become a champion for deaf women nationwide, mentioned that the newborn was positioned near a sink, as hospital staff explained there was not enough bed space.
Although the newborn is surviving and doing well, the absence of inclusion for individuals with disabilities within the nation's healthcare system resulted in two miscarriages for Beyioku-Alase.
"In 2018, I experienced a miscarriage of twins due to my illness, and they failed to communicate with me to help me comprehend my problems and address them," she added.
The oversight went further than just during childbirth. When she requested family planning services, medical staff made assumptions instead of providing explanations. Due to inadequate counseling, they provided contraceptive methods, assuming she would not comprehend the available choices or their possible adverse effects.
"During the family planning process, they didn't inform me about the available choices or conduct any tests, assuming I wouldn't comprehend," she shares.
Continuing, the mother of four stated, "I stopped using it right away after employing it for two months because it had an impact on me." The absence of communication had once more endangered her well-being.
Confronted by ongoing neglect and difficulties in communication, Beyioku-Alase decided to receive her next prenatal care and give birth at a church-run delivery center instead of going back to the hospital that had let her down. She mentioned that the staff at the church clinic showed genuine empathy and were eager to find methods to communicate and meet her requirements.
"In 2016, I chose to have my baby in a church. This was my first experience giving birth there because they are very welcoming and compassionate, in contrast to the hospital, which showed no concern," she explains.
The narrative of Beyioku-Alase highlights the difficulties numerous women with disabilities encounter when trying to obtain maternal healthcare in Nigeria.
Currently, as National President of the Deaf Women Association of Nigeria and Executive Director of Deaf Women Aloud Initiative, she works to promote the rights of deaf women throughout the nation. Her own experiences drive her commitment to ensure that no other woman goes through what she did.
The elevated rate of maternal deaths in Nigeria
Nigeria holds one of the highest rates of maternal deaths globally. As per the United Nations Population Fund, Nigeria is listed among nations with extremely high maternal mortality rates, ranging from 500 to 999 deaths for every 100,000 live births.
Factors leading to maternal fatalities encompass bleeding, infections, hypertensive conditions like eclampsia, unsafe abortion procedures, and difficult labor.
Research indicates that cultural and religious beliefs, restricted access to medical facilities, expensive healthcare services, and the attitudes and actions of maternal health professionals all play a role in pregnant women avoiding prenatal care and opting against giving birth in hospitals.
As reported by Gavi, the Vaccine Alliance, only 46 percent of births in Nigeria take place with the oversight of a physician, nurse, or midwife.
13 million women who have a disability
Globally, approximately 1.3 billion individuals, which accounts for 16 percent of the population, face disability, according to the Global Report on Health Equity for Persons with Disabilities (2022). The World Report on Disability indicates that around 25 million Nigerians have some type of disability, including roughly 13 million women and girls of pre-, post-, and reproductive age.
Although there is no precise number for the population of women of childbearing age who have disabilities, various sources suggest that they make up approximately 20 percent of women in the country.
Beyioku-Alase estimates that between 4.5 million and five million Deaf women could be present, considering the total number of Deaf Nigerians, which ranges from nine to 10 million, along with a near-equal male-to-female sex ratio.
Discrimination by health workers
Having served as the previous president of the Joint National Association of People with Disabilities, Ekaete Umoh has been advocating against discrimination faced by pregnant women who have disabilities for nearly thirty years.
"The health workers are the biggest abusers," Umoh says, referring to research carried out by her organization at one of the teaching hospitals in the South-South region of the country.
She mentioned that the mistreatment of pregnant women with disabilities stems from deep-seated perceptions, along with insufficient staff, facilities, and equipment.
They believe you already face enough challenges, so why create more? They fail to recognize the rights that women with disabilities deserve in the reproductive domain. They think they shouldn't have these rights at all.
"There is always a sense of, 'how will they take care of the baby? Don't you feel sorry for yourself, considering your condition, you went and got pregnant?' Therefore, the health workers are the biggest abusers, according to our findings from as early as 2006 or 2007," Umoh adds.
She indicated that although society debates whether women with disabilities should have children, these women experience significantly higher rates of sexual exploitation and mistreatment.
Umoh informed PUNCH Healthwise that several deaf women have passed away during childbirth due to nurses and midwives being too indifferent to discover methods for conveying essential information.
"Even if they don't verbally mistreat the woman, their body language is terrible, and their behavior and attitude are extremely disrespectful. Imagine a person with a disability who might not hear, and when labor begins, she doesn't understand what you're saying and doesn't know when to push or stop," she remembers.
PWDs avoid hospitals
She also mentioned that healthcare professionals frequently push for cesarean sections without adequate evaluation, believing that any physical disability automatically rules out vaginal delivery.
If they spot someone with a physical disability, they don't let you decide to push. They don't even let you speak. They simply inform you it's CS. I know many women with disabilities who have delivered their babies successfully and were determined to push.
"Many women with disabilities steer clear of health facilities due to the perceived humiliation. Even if they don't verbally mistreat the woman, their non-verbal cues are appalling," Umoh explains.
When pregnancy brings shame
She added, “When individuals are commemorating pregnancies and showing off their baby bump, for women with disabilities, it's entirely about embarrassment. It's extremely distressing.”
Umoh says, "Even when you attempt to attend prenatal appointments, they won't engage in that thorough discussion with you to grasp the situation. In fact, it's not a welcoming environment," she points out.
She points out that women with disabilities make up 20 percent of the overall female population, but their sexual and reproductive health requirements are consistently overlooked.
"If women do not experience satisfaction in their sexual and reproductive health, and if they face any setbacks or issues, it impacts all areas, particularly the economy," Umoh states.
She advocates for a thorough review of current policies and their execution, not only in Nigeria but throughout African nations, to discover effective approaches for inclusive sexual and reproductive health care.
"Are women with disabilities entitled to sexual and reproductive health? Yes. Are they safe when it comes to pregnancy? Yes. Should they have access to the services? Yes. Then why aren't they?" she questions.
A research titled "Pregnancy in Disability: Community Perceptions and Personal Experiences in a Rural Setting in Ghana," authored by Bridget Akasreku, et al, highlights that there is a common belief that women with disabilities are unable to have a secure childbirth experience, and in certain instances, individuals hold the view that they might pass on their disability to another pregnant woman's unborn child.
A policy gathering dust
In June 2018, the Federal Ministry of Health partnered with the Federal Ministry of Women Affairs to introduce the National Policy on Sexual and Reproductive Health and Rights for Individuals with Disabilities, with a particular focus on Women and Girls.
The guideline, created via a collaborative approach including government bodies, disability organizations, and development stakeholders, clearly acknowledges that women and girls with disabilities share the same sexual and reproductive health requirements as others.
As per the World Report on Disability referenced in the policy, approximately 25 million Nigerians have some type of disability, including around 13 million women and girls.
The policy recognizes that women and girls with disabilities are disproportionately impacted, as they are typically impoverished, reside in isolated rural regions lacking economic influence, and face various types of discrimination, beginning as women and subsequently as women with disabilities.
The text mentions, “They have frequently been denied the opportunity to form relationships and to choose when, with whom, and whether to start a family. Numerous individuals have faced forced abortions or compulsory marriages. They are more prone to encounter physical, emotional, and sexual abuse, along with other types of violence based on gender.”
The policy identifies five key areas for action, such as enhancing understanding and awareness, boosting access to sexual and reproductive health services, fostering inclusion in decision-making processes, establishing collaborations, and encouraging research and evaluation.
It mentions, "For numerous individuals, the services and initiatives needed to fulfill their sexual and reproductive rights are not accessible. Even when such services and programs exist, many women with disabilities continue to be left out because of physical, financial, emotional, and societal obstacles that hinder their access."
The policy paper explicitly emphasizes the need for training healthcare professionals in matters related to disability, highlighting that a significant barrier to delivering effective sexual and reproductive health services to women with disabilities is the negative attitudes of health workers due to insufficient knowledge about disability issues.
It suggests that the necessary understanding and abilities related to disability should be incorporated into the current training programs for healthcare professionals, particularly in pre-service initiatives for medical schools, nursing schools, midwifery, public health, and hospital administration courses.
Even though the policy also tackles the inclination of healthcare professionals to make choices without seeking input from women with disabilities, a problem highlighted by numerous women with disabilities, seven years since the policy was introduced, there has been minimal progress.
Nigeria became a party to the United Nations Convention on the Rights of Persons with Disabilities on September 24, 2010, thereby obligating itself to ensure that all laws, policies, and initiatives align with the convention's requirements.
Article 25 of the agreement mandates that countries provide equal access to healthcare services for individuals with disabilities, specifically highlighting sexual and reproductive health. Article 23 obliges countries to remove discrimination against people with disabilities in all aspects concerning marriage, family, parenting, and relationships, including issues related to family planning, fertility, and family life.
However, the difference between policy and practice is still significant. The 2018 policy document acknowledges that Nigeria's national health policies and plans typically do not incorporate disability-related issues or provide for individuals with disabilities.
They make contact with inappropriate areas of our bodies
The Deputy National President for Individuals with Physical Disabilities in Nigeria, Betty Mumbe, states that women who have disabilities encounter various challenges while trying to access sexual and reproductive health services.
Drawing from her personal experience as a woman with physical disabilities of childbearing age, Mumbe highlights communication, structural, attitudinal, traditional, religious, and institutional obstacles as significant difficulties.
She pointed out that deaf women of childbearing age who struggle to communicate with healthcare professionals during prenatal care frequently encounter neglect, abandonment, and intentional exclusion because there are no sign language interpreters available.
"Therefore, they may struggle to communicate with medical service providers. This increases their vulnerability and that of their unborn children to various disabilities, as doctors make assumptions about their conditions, and they return home with other underlying health issues linked to pregnancy and childbirth," Mumbe explains.
She cautions that this communication failure leads to more children being born with some type of disability, simply due to language issues in hospitals.
A disability rights supporter adds, “Many hospitals in our nation are difficult to access due to their design, which includes several staircases. Consequently, individuals using wheelchairs or those with physical disabilities who rely on crutches or walking sticks might need to crawl and could struggle to reach our healthcare services without help from others.”
The previous FCT JONAPWD Women’s Leader recounts the situation as degrading. "Can you picture a pregnant woman being transported by a man who isn't her husband simply because she needs medical care? In such instances, her respect is compromised, as those helping to carry her might touch her inappropriately—such as her chest, private areas, or abdomen—since they are not trained in proper carrying techniques," she explains.
Mumbe also points out unfavorable perspectives and mentions that some medical professionals think women with disabilities should not become pregnant.
She states, "Some even propose family planning. Others go as far as administering family planning medications or anything else without your permission, and this is inhumane. They believe they are helping you, but that is not a favor. It's an act of injustice."
She cautions that these obstacles put both the mother and the child at greater risk of additional health complications.
She cautions that certain women remain in their homes for self-delivery, leading to greater harm and risk, which can cause children to suffer from infections and bacteria that eventually lead to disabilities.
Regarding institutional obstacles, she points out the lack of intentional policies that safeguard women with disabilities in work environments and medical facilities.
She claims that society views everyone as female and demands that women with disabilities carry out the same responsibilities as those without disabilities, ignoring their unique requirements and constraints.
"There are no intentional policies within the healthcare system or elsewhere that safeguard the rights of women and girls with disabilities who are of reproductive age. Consequently, there are structural and policy obstacles," Mumbe states.
People with disabilities are not restricted from having children – Obstetrician
"A woman with a disability is still capable of having children; her rights should not be restricted," said Dr. Joseph Akinde, the Lagos State Chairman of the Society of Gynaecology and Obstetrics of Nigeria.
He stated that women with disabilities should go to antenatal clinics along with their partners, noting that this ensures "there is someone present to convey any information being shared."
The specialist in maternal health mentioned that healthcare professionals and facility administrators also need to contribute by offering appropriate communication assistance.
It could be necessary to use sign language to support deaf women. There should be sign language interpreters available in these hospitals to convey information to them," he stated, highlighting that "healthcare professionals should not show bias towards them.
Speaking about the requirements of women with visual impairments, he stated, "They will require assistance. Individuals who are visually impaired would need someone to guide them, and healthcare centers should take accessibility into account when designing their facilities and providing services."
Many government organizations currently provide entry points or ramps for individuals using wheelchairs. Therefore, visually impaired people and those with disabilities should also be considered when planning programs and activities in healthcare facilities to promote their involvement and prevent discrimination.
Regarding policy actions required to assist women with disabilities and lower maternal death rates, Akinde mentioned that the government has achieved some advancement but needs to take further steps.
Similar to how the government has created access routes for wheelchairs, the government should also proceed to enact an Act," he stated, emphasizing that laws are necessary to ensure institutions "provide for them and consider their interests so they are not excluded from the overall framework.
He called for increased political commitment at every level, emphasizing that "there must be a conscious effort by governments at the local, state, and federal levels to ensure that women with disabilities are included."
He mentioned that their well-being should come first, stating, "They must be supported and their rights safeguarded within the overall framework."
Implement legislation for pregnant individuals with disabilities – Gender activist
The Executive Director and Head of Gender and Development Programs at HACEY Health Initiative, Rhoda Robinson, highlights a significant gap in terms of specialized care, access to such care, and infrastructure for women with disabilities requiring prenatal services.
She added that the condition was critical for pregnant individuals with disabilities in impoverished and underserved areas.
"They have faced structural exclusion over the years, leading many to overlook the fact that these women might need an additional level of support that should be integrated into current systems and processes to provide them with the highest quality care," she said.
The gender activist criticized the lack of attention and the failure of medical professionals to effectively communicate, particularly with non-verbal pregnant women, highlighting the importance of creating inclusive systems and setups within healthcare centers.
The ED mentioned that although current policies address the rights of women to maternal health care and services, they lack provisions that facilitate access for women with disabilities.
Robinson emphasized further that while the nation has signed and approved the Convention on the Rights of Individuals with Disabilities, there remain several gaps and shortcomings in its execution.
"We now require policies that address and support pregnant individuals with disabilities and women who need maternal and reproductive health services. It's not only about a woman being able to attend antenatal care and give birth safely; it's also about her having access to all the information needed to make these decisions, such as availability of family planning information," she stated.
A health promoter criticized the lack of accessible facilities in public health centers and urged for policies that ensure equitable maternal healthcare services for people with disabilities.
Robinson stated, "We must tackle the problem of discrimination faced by women with disabilities and their sexual and reproductive health. There is a harmful belief in our society that creates obstacles for them to reach a medical facility. We need to make sure that we have policies in place to deal with these issues. Inclusion should be a key measure within our maternal healthcare scorecard or framework, indicating how effectively we are meeting the needs of women."
Provided by SyndiGate Media Inc.Syndigate.info).
