How people with speech, hearing loss are denied healthcare services in Abuja (Part 1)
Imagine that you have a medical emergency, but you can’t communicate with the doctor because he doesn’t understand what you are saying. Imagine the doctor asking you questions to diagnose your ailment, but you don’t understand what he is saying or what the medication he has prescribed for you is for. JOSEPHINE EJEH looks at this and many other challenges faced by people with hearing loss when accessing healthcare services in public hospitals in Abuja, Nigeria’s Federal Capital Territory (FCT) due to the absence of sign language interpreters.
IT was her first pregnancy in 2012. Like every other expectant mother, she was very excited to register for her ante-natal clinic. Her expectation was that she would be given all the necessary healthcare support other pregnant women usually enjoyed. But against her expectation, it all turned out to be one of her worst nightmares ever as her pregnancy progressed.
Beyioku-Alase Hellen is hearing and speech impaired, a condition that makes her unable to hear or speak. She developed these conditions in 1994 at the age of six.
Though she had heard many unpleasant tales of how people with speech and hearing loss were marginalized at public hospitals, the 32-year-old expectant mother had thought health workers in the hospital where she enrolled for the ante-natal care would be sympathetic with a pregnant woman who is speech and hearing impaired.
Hellen was wrong.
Her hope of getting the best ante-natal care continued to dim after each appointment in the hospital. She would leave her home very early in the morning so that she would be among the first few pregnant women to arrive at the hospital, yet she always ended up being the last patient to leave the hospital as a result of the communication barrier. Oftentimes, her hospital card would be abandoned after the nurses have repeatedly called her name without any response.
On the first day of her ante-natal clinic, Hellen, now a mother of four, was the first to arrive at the clinic so she was the first on the list of patients for medical attention, but she was left unattended to for almost nine hours and not allowed to see the doctor until other expectant mothers had seen the doctor. All her efforts to get the attention of the nurses and other health workers when they were calling out names and she couldn’t hear them, were frustrated. The health workers shouted her down and ordered her to sit down.
In her confused state, after so many hours, Hellen mustered the courage to report the matter to the medical director of the hospital.
“I was very angry, so I summoned the courage to approach the Medical Director of the hospital. I laid my complaints to her in writing and she was sympathetic with my plight and the issue was resolved. I thought that was all, but I was wrong. When I went into labor subsequently and went to the hospital, there was no health worker to explain to me what I should do at each stage of my labor. The nurses just signaled to me with their hand to wait and left me in severe pain for up to 45 minutes. I felt so bad,” she narrated to The ICIR.
Throughout the period of her painful labor, Hellen could not explain to the nurses how she felt. She muttered some sounds, but no one understood what she meant. Even when she felt the baby head was coming, the nurses were nowhere to be found and she could not call out to them. Hellen laid there in the labor ro0m all alone panicking that something bad could happen if the baby arrived when nurses were not around.
“As God would have it, a nurse came in to check and behold she saw the head of the baby and shouted. She was not prepared to deliver the baby so that was how God saved me and my baby,” she said.
It was a similar experience during her second pregnancy. Hellen would be in the hospital as early as 6 am but nobody cared if she was around or not. Some expectant mothers who arrived at the clinic hours later would be attended to while she was left out.
During the sessions of health talks for pregnant women, she would sit down among other expectant mothers in the clinic feeling ignored, marginalized, neglected and left out because she could not make any sense of what the nurses were saying. Hellen had no slightest idea of the things she ought to do as an expectant mother and what not to do due to the communication barrier.
In one instance, she wrote to a nurse to plead with her to explain in writing what she lectured the other pregnant women but, the nurse shouted at her down, saying that she was disturbing her.
The attitudes of the health workers made Hellen who was then a student of Abuja University to resolve never to return to the hospital again for delivery since she realised she could not trust them with her life and the life of her unborn baby. She re-enrolled in a private maternity clinic belonging to a church to deliver her second baby.
Like Hellen, many women with speech impairment and hearing loss have been forced to boycott ante-natal clinic when pregnant because of the hostile and unfriendly attitude of health workers. Some of them even prefer to deliver their babies at home to avoid the harsh experiences they have in the hospitals.
“When you are sick, you have the right to go to the hospital but when you go to the hospital, you don’t find anybody who understands your language. Sign language is the language of the deaf so if I don’t have anybody who understands my language how do I express myself? Imagine as a pregnant woman I go to an ante-natal clinic. I sit down like every other woman, but there is no interpreter. How do you expect me to be able to make sense of what is being said? How do I take care of myself as a pregnant woman, if the information is not available because of communication barriers?
“So, how do the deaf get all that information? This is one of the sad experiences that makes deaf women not go to the hospital because we feel ignored, marginalized and not considered. It is as if our human rights don’t matter to the health workers. They feel hospitals are for only people who can speak and not for deaf people, that is wrong,” Helen said while recanting her ordeals in the hospital during her first pregnancy.
“Even if I remember that experience most of us prefer to give birth at home. Just imagine if the woman dies giving birth herself. So, we need to change the attitude and orientation of doctors and nurses to know that we are all humans too. We are all humans. We have equal rights when it comes to health. Whether deaf, blind or physically challenged, we are all the same,” she said.
Hellen’s sad experiences in the public hospital birthed the Deaf Women Aloud Initiative (DWAI), an initiative she pioneered.
DWAI is an organisation which promotes the rights of deaf women and girls, works to ensure proper access to health care services and information as well as help them to fight sexual and gender-based violence, among others
Years later, the thought of how to communicate with the doctors and other health workers remains a source of worry to the Executive Director of Women Aloud Initiative, whenever she is ill.
“As I am here today, each time I feel any pain or discomfort in my body, what comes to my mind is, if I go to the hospital, how will I be able to communicate with the doctor? I may be educated and can write but what about other deaf people who only depend on sign language because they can neither read nor write,” Helen asked?
With her experiences and those of other pregnant women suffering from speech and hearing loss, who died due to negligence and lack of communication, she was determined to change the situation so that other women with speech and hearing loss will not have the same experience.
Hellen is one of the thousands of faceless people with speech impairment and hearing loss facing the challenges of accessing healthcare service due to the communication barrier with health workers in Abuja public hospitals.
Enniyin Bose, 46, always feels frustrated anytime she visits the Kuje General Hospital because she can’t communicate with any of the health workers in the hospital.
Due to the language barrier and the absence of a sign language interpreter, often spends longer periods in the hospital before she eventually sees the doctor.
Her predicament is compounded as she is further subjected to the rigors of communicating with the doctors through writing.
“It is not always easy because when I submit my hospital card, the nurses will keep calling and shouting my name, I will not hear so I will not answer. So, sometimes I get very angry and frustrated that I am kept so long in the hospital,” Bose, who lost her hearing and speech at the age of nine due to medical complications, told The ICIR.
Ignored and marginalized
The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being, including people with hearing loss, according to the United Nations in the World Health Organisation(WHO) World Report on Disability, 2011.
Also, access to health care without barriers is one of the rights of people with disabilities clearly defined by the United Nations Convention on the Rights of People with Disabilities (UN- SCRPD). Based on this provision, people with hearing loss and speech impairment have the right to enjoy the highest attainable standard of health, yet the communication barrier has resulted in health workers ignoring and neglecting them, making them feel frustrated, intimidated, and marginalized.
United Nations Convention on the Rights of Persons with Disabilities
On March 30, 2007, Nigeria signed the United Nations (UN) Convention on the Rights of Persons with Disabilities. Subsequently, on September 24, 2010, it gave a formal confirmation, ratified and assented to the Convention.
The 2006 UN Convention enjoins the States Parties to secure the human right to a signed language in legislation; to ensure its use in civil society, educational settings and cultural settings; and to secure its use as a means of access to wider society, including health services.
Article 30 of the Convention enjoins States Parties to provide early intervention services designed to minimize and prevent further disabilities, and that best practices in health-care access should follow these Articles, as well as Article 9, which mandated the provision of accessibility in health-care settings via national signed language interpreters.
Although Nigeria is one of the signatories to the Convention and its Optional Protocols, it has not lived up to the expectations of the Convention because in the area of health, accessing healthcare remains a challenge for individuals with speech and hearing impairment in various parts of the country, including Abuja, the Federal Capital City of Nigeria where they are constantly discriminated against, intimidated and ignored.
No Professional Sign Language Interpreters to Sign for Deaf Patients
Investigation revealed that many hospitals in the FCT-primary, secondary and tertiary health facilities, do not have professional sign language interpreters who are very important to bridge the communication gap between health workers and patients with speech and hearing loss visiting the hospitals.
Nearly all the public hospitals visited by our reporter do not have professional sign language interpreters that would have helped to bridge the typical communication gap people with speech and hearing loss usually face with health workers in hospitals.
Hospitals Rely on Note Taking to Communicate with Patients with Hearing
Checks also revealed that many of the hospitals in the FCT predominantly rely on note-taking as the method of communicating with patients suffering from speech and hearing loss.
In many instances, doctors or other health workers were not even patient enough to allow such patients ample opportunity to explain vividly in writing, their health challenges.
Demian Ayo, who lost his hearing at the age of eight is one of such persons who are being deprived of the right to receive the best medical attention.
Each time he visits the Asokoro General Hospital where he accesses healthcare services, he faces communication barriers because there is no sign language interpreter in the hospital. Demian often feels sad because, on many occasions, he is not given the opportunity to be diagnosed.
“Sometimes the doctors are patient to write, sometimes they just look at me and administer treatment or drugs without saying anything to me,” he told The ICIR.
Doctors and other health workers in Nyanya General Hospital also depend primarily on note-taking. A female nurse confirmed to The ICIR on the condition of anonymity that there has been no professional sign language interpreter in the hospital for over three years that she has been in employment, so the health workers communicate with patients with speech and hearing loss basically by writing notes.
When The ICIR visited that hospital, Dr. Ekpe Philip, the Medical Director of the hospital could not be reached. Our reporter was asked to wait for hours to see him. But after waiting for hours, she was denied access to him and told instead by his Personal Assistant to write an official letter requesting to have a chat with the Medical Director.
The situation is the same at Wuse Hospital, where a top management staff also confirmed to our reporter that the hospital depends on the writing method to communicate with speech and hearing-impaired patients.
Other patients who cannot read or write, usually come to the hospital with an interpreter.
High Cost of Hiring Services of Private Sign Language Interpreter
Hearing and speech impaired people from wealthy backgrounds and those of average economic status living within the city centre, pay for the services of professional sign language interpreters to escort them to the hospital. However, how many poor persons with speech impairment and hearing loss in the hard-to-reach communities in the FCT struggling to make ends meet are financially buoyant to pay for the services of a sign language interpreter?
Sometimes, even those who can afford to hire the services of an interpreter, face the difficulties of finding one on short notice. There is also the issue of confidentiality as persons with speech and hearing loss who spoke with The ICIR said they feel ashamed disclosing personal information, asking and responding to private issues in the presence of an interpreter, a friend, or family member.
Family members, friends and children used as interpreters
In most of the communities visited, people with speech and hearing loss use family members, friends and their children as interpreters because they cannot afford the service of a private sign language interpreter.
Where they are not available, they (people with speech and hearing loss) visit the hospital alone without communication support and demonstrate how they are feeling by just pointing to the part of their body where they have discomfort, leaving the health workers with the difficult task of figuring out what he is implying.
Joseph Denda, 43, uses his younger brother Benjamin as an interpreter whenever he visits the Primary Healthcare Centre in Leleyi Gwari community in Kwali Area Council where he lives.
The peasant farmer whose speech impairment resulted from an illness, can hear what the health workers say but due to the speech challenge uses gestures to respond to the health workers’ enquiries with the help of his brother.
Benjamin who always feels sad and frustrated each time he has to accompany his elder brother who is a grown man to the hospital like a child shares similar feelings with other relatives of people with speech impairment and hearing loss who are forced to abandon their works or other activities to accompany their relatives to the hospital.
Mitsi Dimitra, Armyra Christina, Fradelos Evangelos in a publication on ‘Deaf People Accessibility in Health Services” published on researchgate.net, observed: “The use of these individuals as interpreters and mostly deaf children should be avoided as interpreters as it is more likely to make mistakes due to their lack of knowledge of the medical terminology.”
The researchers noted that the personal relationship of these persons with deaf people put to question the impartiality and credibility “as there is the possibility of concealment or paraphrasing of the content provided by the physician or patient’s information.”
They also observed that “the presence of these people and the use of them as interpreters may inhibit discussion and reporting of sensitive issues such as domestic violence, substance abuse and sexually transmitted diseases.”
For Bose and other persons with speech and hearing loss who are literate, noting taking may provide an alternative in the absence of a professional sign language interpreter, but can this equally apply for uneducated ones who can neither read nor write?
Patients with Speech and Hearing Loss Misdiagnoses and not Diagnosed
Finding shows that many people with speech and hearing loss are often not diagnosed properly. Symptoms point the doctor in the right direction, hence, a patient’s description of the symptoms he or she is having helps the doctor identify the problem. But due to the communication barrier, patients with hearing and speech impairment are not able to explain their symptoms vividly to the doctor for correct diagnoses.
The Executive Director of Deaf Women Aloud Initiative (DWAI)who also confirmed this at the recently held 2020 International Week of the deaf said people with speech and hearing loss are at a greater risk of being misdiagnosed or not diagnosed at all because of the existing communication barrier between them and health practitioners.
“They (patients with speech and hearing loss) touch their head to demonstrate that it is aching and that’s all, but how do you figure out exactly what their ailment is with just that? Honestly, most of us go to the hospital with malaria and other ailments but the doctors prescribe only paracetamol for us because we were pointing to our head, so they assume it is a headache that is the issue,” the said with a sad look on her face.
Whenever Patrick Usman, a blacksmith visits the health centre in Passepa community in Bwari Area Council where he lives, he usually points to where he is experiencing a disorder in his body, leaving the doctor or health worker to presume what could be the issue.
“I feel very bad and frustrated whenever a very serious sickness takes me to the health centre because I can’t explain exactly how I feel. Nobody understands me so I just point to the part of my body that I’m not feeling well. If it is a headache, I will use my hand to touch my head and if it is a stomach ache, I do the same thing,” the 34-year-old who spoke through his childhood friend who understands his signs told The ICIR.
Like other persons with speech and hearing loss, Patrick believes that if a sign language interpreter is stationed at the hospital, the communication barrier he experiences would have been surmounted.
Patrick’s story is not different from that of Maikasuwa Sharia, who lives in Kayache also known as Buzunkure in Kuje Area Council of the FCT.
His wife, Tausayi sometimes accompanies him to the hospital when he is sick to explain his symptoms better to the doctor since there is no sign language interpreter at the clinic in Kuje where he accesses health services.
However, if the situation requires urgent medical attention and Tausayi is indisposed, the 37-year-old man has no other choice but to visit the clinic alone without communication support.
Due to the communication barrier, all Maikasuwa does is point to the part of the body where he is having the discomfort and it is left for the doctor to figure out what he is implying.
The mother of four, who always abandons her children at home to escort her husband to the hospital, believes that a sign language interpreter at the hospitals will save her all the stress.
“Since he (Maikasuwa) is an adult, I don’t need to be following him to the hospital like a child because he can explain what is wrong with him to the doctor by himself if there is somebody at the hospital to interpret his sign language,” she said.
Health Workers Rely on Lip reading to Communicate with the Deaf
Over the years Rebecca Adeyanju, a midwife at the Primary Health Centre in Leleyi Gwari community in Kwali, relied on lip-reading methods to communicate with her patients since there is no sign language interpreter in the clinic.
Justina Faruk is one of the persons with speech impairment and hearing loss in the community Rebecca has cared for over the years. She lost her hearing at the age of seven due to meningitis infection when she was only in primary school three.
Pointing to the 22-year-old mother of two at the premises of the hospital, Rebecca said: “We communicate very well. We understand each other. When I speak, she reads my lips because she can’t hear but she replies to me because she can speak.”
Though, health practitioners like Rebecca, believe lip reading or speech reading and note writing provide effective health communication, Lieu, Sadler, Fullerton and Stohlmann in a 2007 study on “Communication Strategies for Nurses Interacting with Patients who are Deaf, describe these methods as “ineffective communication modalities for healthcare conversations.”
According to the researchers, “Deaf people who have practiced lip-reading/speech-reading for many years and who are familiar with spoken language are able to understand at best 30–45 percent of spoken English.”
A visit to Tunga-Ashere, a community in Angwan Madaki District under Abuja Municipal Area Council (AMAC), revealed a similar communication gap between health workers and people with speech and hearing loss.