“I’m aware that childbirth is filled with pain and agony but I didn’t imagine it would be hell for me as a woman with a disability. I’m grateful I survived it but I am not sure I want to go through this journey again.”
Obioma Chinedu, (pseudonym) a woman with physical disability in her forties recounted her child bearing experience, revealing how she almost lost her life as a result of the complications that arose while she was pregnant.
Chinedu, a public servant in the Anambra State Civil Service, revealed how she had to seek a transfer from the government-owned Hospital, Regina Caeli Specialist & Maternity Hospital, Akwa, Anambra to a private hospital, St. Theresa Hospital, located close to the Anambra State Government House, so she could access quality healthcare service and protect her life.
“It was a horrible experience, going from my house to the hospital for antenatal [was] extremely difficult. To get a vehicle to convey me from the house to the hospital is a challenge. When I get to the hospital, getting to the room for the antenatal session which is on the upper floor is also another challenge,” said Chinedu. Of the experience, she notes, she had to spend several minutes climbing the stairs, while resting her weight on her prosthetic leg and balancing her crutches. .
“The nurses are also not supportive in any bit as they disregard complaints from pregnant women, accusing us of being lazy. When it became unbearable, I had to switch to another hospital, where I was properly taken care of,” she narrated.
Chinedu’s experience is one of the experiences pregnant women with disabilities (WWDs) face in accessing quality healthcare services. These issues range from affordability, accessibility, inadequate equipment for disability-specific needs (like weighing scale for wheelchair users and adjustable beds), social, environmental and institutional barriers.
Experiences of WWDs in South West Nigeria
Just like the story of Chinedu, WWDs in South West Nigeria spoke with BONews Service about their experiences throughout the 9-months journey.
Mrs. Mary Olakulehin, a Deaf woman who delivered at the State Hospital, Oyo town, shared that the health facilities are not accessible to pregnant women with disabilities, but efforts, like the implementation of the National Disability Act, are being made to ensure that the process is easier for WWDs.
“Some of the challenges I encountered during delivery included lack of access to information because there were no sign language interpreters. I was made to sit and lip read whatever the nurses were telling other women.
“I also encountered disrespectful dispositions of some hospital staff and other patients on account of my disability,” she explained.
Olakulehin however expressed delight that some nurses on their own, would contact sign language interpreters to interact with her during her appointments.
Also, Mrs. Gloria Yakubu (not real name), a physically challenged woman who gave birth in June 2021 recounted her various experiences of child bearing at three different instances in different hospitals, revealing that each experience has been an improvement of the preceding one.
“In all instances, the doctors and nurses gave their best to support me as a woman with a disability. I’ve heard other people share experiences of how unpleasant things are for them, but it was relatively good for me. I can’t ascertain why my situation was different compared to others but it would really be good if every pregnant woman with disability can access good healthcare regardless of their location or type of hospital they use.”
National Disability Act to the Rescue
The Discrimination Against Persons with Disability (Prohibition) Act 2018 was signed into law in January 2019 by President Muhammadu Buhari and it provides principles and guidelines to help improve access to healthcare services for PWDs in general.
Explaining how the National Disability Act is helping to improve access of pregnant WWDs to healthcare services, Dr Irene Patrick-Ogbogu, Executive Director, Disability Rights Advocacy Centre, DRAC, explained that the National Disability Act is multi-faceted and does not specifically make provisions for WWDs or pregnant WWDs, but compliance to all the sections would help to improve access for pregnant WWDs.
She explained that the sections of the Disability Act that are applicable to improving healthcare services for pregnant WWDs are; “Prohibition of Discrimination and Harmful Treatment, Right of Access to Public Premises, Accessibility of Vehicles and Free Healthcare.”
The Act has given a 5-year moratorium to public institutions and government agencies to ensure compliance to the provisions in the Act, with the goal of improving the overall well being of persons with disabilities in Nigeria.
The Act gave penalty for the violation of its provisions by individuals and organizations, ranging from payment of fines or/and imprisonment depending on which section of the Act has been violated. The penalty would only become effective after the 5 years period of grace.
Disability Accessibility Audits of Maternal Facilities
Using a Disability Accessibility Audit tool developed by Inclusive Development Consultants, the reporter conducted an accessibility audit in three maternal healthcare facilities in Lagos, Ogun and Oyo States.
Medical facilities across the countries have varying degrees of accessibility requirements for pregnant women with disabilities. For example, the Mother and Child Hospital in Omole, Lagos is located close to a major bus stop, the main building close to the gate, and pedestrians or wheelchair users can easily access the building using a ramp. The building is a one-storey building with the ante-natal ward and delivery rooms located on the ground floor for easy access to pregnant women, thereby eliminating any form of barrier that pregnant WWDs could encounter.
However, there’s no stand-by sign language interpreter, nor any of the medical practitioners trained in sign language for the purpose of Deaf persons. Dr. Toyin Olarewaju, medical doctor at the Mother and Child Hospital, however noted that, if required, provisions would be made to attend to Deaf persons who may require the service of an interpreter.
The Federal Medical Centre, Abeokuta is located close to major bus stops for easy accessibility for public transport users (Iyana Mortuary and Olokuta Junction). The gate house to the ward area is about 3 to 5 minutes walk which could be inconvenient for pregnant WWDs who are pedestrians; especially physically challenged and visually impaired persons. The ward for ante-natal sessions and delivery room is located on the ground floor for easy access to pregnant WWD. There are no sign language interpreters for Deaf persons but doctors provide writing materials to educated hard-of-hearingwomen for communication while those who are not educated can lip read, an approach that is generally not efficient.
Adeoyo Maternity hospital in Ibadan is located at Yemetu in Oje, slightly far from the major bus stop, and requires an additional drive of about 7-10 minutes to the hospital. The distance from the gate house to the ward area is trekkable with wards for pregnant women located on the ground floor. it could not be ascertained if there are sign language interpreters within the hospital.
Doctors’ Awareness About the Disability Law
Some medical doctors are not aware of the National Disability Act even though they have interacted with pregnant WWDs at different points in time.
Dr. Ogunfunlayo, Head of Department, Optic and Gynecologist at the Federal Medical Center, Abeokuta, who explained that he has little knowledge of the law, shared experiences of how he has taken delivery of pregnant women with various forms of disabilities and the various forms of limitations he experienced during the processes.
Dr. Ogunfunlayo said, “I am aware of the National Disability Act and provisions for accessible healthcare for persons with disabilities currently in the House of Assembly but I am not sure if the President has assented to it or not.
“I don’t know the full content of the law but I know the National Disability Act involves a lot of things, not necessarily health alone.”
He mentioned that regardless of his little knowledge about the law, he has taken delivery of the Deaf, Blind and physically challenged, adding that “some WWDs can actually go into labour such as the Deaf and Blind, except there is any other underlying factor and that’s when they go through caesarian process.”
On his part, Dr. Toyin Olarewaju is not conversant with the Disability Act but has also taken delivery of pregnant WWDs.
Olarewaju shared that he had taken delivery of a polio survivor who is a wheelchair user and other women with physical disabilities. He narrated that, “I was not the only one that managed her, but I can say we did a good job to support her during the process. She delivered through CS and that was because she can’t have a natural delivery as a result of the weakness of the muscles of the lower limb and the spine. It was safer to go through a cesarean session than to have a natural delivery.”
Role of the National Disability Commission
The National Disability Act provides for the setting up of the National Commission for Persons with Disabilities (NCPWD) which would be saddled with the responsibility of ensuring the implementation of the law and compliance by all stakeholders. The commission was set up in 2020 with the appointment of an Executive Secretary and Commissioners in each geo-political zone across the country.
Speaking on how the Disability law has improved the access of pregnant women with disabilities to healthcare services, Hon. Busuyi Omopariola, South West Commissioner, NCPWD, revealed that much progress has not been recorded regarding the full implementation of the law, adding that the Commission which is responsible for the implementation of the law, “is just one year old.”
Hon. Omopariola said, “many health care centers around are yet to get enlightened about the Disability Act and what it entails on free health access for PWDs. This, therefore, must have been a cog in the wheel for pregnant women with disabilities from being accorded the privilege as enshrined in the Discrimination against Person with Disabilities (Prohibition) Act 2018 section 21(1).”
He noted that the Commission understands that there is a need to work closely with other agencies of government to ensure the implementation of the law.
He explained that, “we are preparing to pay a courtesy visit to the Honourable minister of Health to help enforce compliance of the Disability Act on free access to health care for all PWDs in Nigeria.”
Highlighting that accessible health care services for pregnant WWDs is a cross cutting issue, Hon. Omopariola noted that the Commission is working closely with the Federal Ministries of Transportation, Works and Housing, and other relevant agencies, to ensure that the entire process of the healthcare service is accessible; from transportation to hospital environment and services being rendered at the hospitals.
“Significantly, we are making collaborations with the Federal Ministry of Information to help in sensitising the general public on the existence of the Discrimination against Person with Disabilities Act,” the NCPWD South West Commissioner explained.
He also mentioned that the commission is setting up the enforcement and compliance team to drive full compliance to the provisions of the Act.
Enhancing Improved Access of Pregnant WWDs to Quality Health Care Services
Dr. Patrick-Ogbogu, Executive Director, Disability Rights Advocacy Centre, DRAC, noted that there is a gap in the Disability Act because it doesn’t speak to the specific needs of WWDs, also noting that there is room for review and with the existing provisions of the Act, WWDs can grossly benefit accessible healthcare.
She said, “the Disability Act on its own does not specifically say women with disabilities or pregnant women with disabilities could access certain provisions of the law. However, we can hinge on certain sections of the Act to ensure pregnant WWDs are able to access quality healthcare services.”
The DRAC Executive Director, who strongly believes that the Disability Law has what it takes to support pregnant WWDs, mentioned that, “we don’t have to design a separate policy for pregnant WWDs but we can review existing policies on maternal health and ensure that disability is mainstreamed.”
She tasked all the responsible agencies of governments and organizations to begin to “address the low hanging fruits like employing sign language interpreters, marking car park spaces for PWDs and providing temporary ramps for wheelchair users. Organizations do not have to wait till the end of the 5-year moratorium before they start putting in place the basic things.”
She also believes that the NCPWD must put in place a monitoring framework and work with Organizations of Persons with Disabilities (OPDs) to monitor compliance to the Disability Act.
Olakulehin, a mother who has had her own experience as a pregnant woman with a disability, believes that the provisions of the Disability law is sufficient to enhance accessible healthcare services for pregnant WWDs and noted that, the government should enable the NCPWD to enforce the Disability Act on all health institutions and orientate health workers on the provisions of the Disability Act 2018.
“Organize orientation and awareness programmes for health workers on disability and health and provide financial support to health institutions to provide facilities peculiar to persons with Disabilities in government owned hospitals,” said Olakulehin.
She concluded by noting that, “the government needs to strategically select and designate at least three disability friendly health centers in every local government area and finance them to provide adequate health care services to pregnant women with Disabilities.”
On his part, Dr. Ogunfunlayo of the Federal Medical Center, Abeokuta thinks that, “the government should give special health incentives to persons with disabilities to be able to access good medical attention because some of them may not have the financial strength to be able to do most things on their own. Social security and social protection should be more tilted towards WWDs than the generality of the people.”
He also noted that “government and healthcare workers should always ensure to make health services accessible to WWDs by making provisions for sign language interpreters, good attitude of health workers should also be encouraged and the service and conduct of health workers should be guided by best international standards, and scopes of service.”