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Edward

This is the story of Edward Narh Tawiah, or Kofi, a fifty-two-year-old man from Tafo near Kumasi who lost a leg in a motorbike accident in 2008. His story highlights the difficulties he faced during recovery, the amount of support he has received from family and friends, and how disabled people have been treated by the government and by society more broadly over the years.

 

Accident and recovery

In 2008, Edward was in a motorbike accident while travelling from Akim Tafo to Bunso. He was taken to the hospital where his left leg was eventually amputated just below the knee. It ended up being a very expensive hospital visit, but Edward was fortunate that friends were able to help him pay the hospital fees. In the aftermath of the accident, Edward had to use crutches, but his mobility was still severely limited; he had to rely on family members to help him bathe. It also put his livelihood in jeopardy, since his job as a carpenter at Bunso Cocoa College entailed a great deal of physical labour and some of his managers didn’t think he could continue working.

Kofi walking through crops harvesting by hand

By 2009, Edward received a prosthetic leg, first an ill-fitting one from the orthopedic centre at Nsawam, and then a better one that he got from an American NGO through the Ministry of Health in Accra. As a result, Edward has regained some of his mobility – he doesn’t need to rely on his family for washing and meals, and he’s still employed, now in a supervisory role overseeing other workers. He’s even able to maintain some farm land at his cottage.

While his prosthetic leg has been crucial to his recovery, it has also come with its own difficulties, especially financial ones. Edward’s leg requires occasional repairs and adjustments, some of which cost as much as 600 cedis. And it is that sort of financial burden that leads Edward to reflect on the difficulties faced by disabled people in Ghana more generally. For, as he points out, similar situations are encountered by a large number of disabled people, many of whom are in a more dire financial position than his own.

 

Living with a disability

Edward offers an instructive perspective on the difficulties that he and others face. In one area of concern, he explains ways in which the government could do a better job responding to the needs of people with disabilities, such as through a better insurance program. Edward notes that the cost of equipment (such as wheelchairs and prosthetic limbs), medication, and hospital and clinic visits puts a great strain on disabled people, and those expenses should be better covered by the government. In addition, he explains that he and others need more government support when a disability prevents education or employment, or makes it difficult to pay children’s school fees. Edward also explains the wider importance of such a system – it should be in place universally, because major accidents can happen to anyone.

There are also a number of social situations that pose problems to disabled people. The lack of assistance when boarding a bus or queueing at the bank, for instance, puts extra strains on the daily lives of disabled people. There is also inconsistent treatment from the wider community, whether at church or in public. Edward notes cases of charity – food and money provided to disabled people and their families – but also a significant amount of stigma. Often, charity is given without care or concern, with condescension, or not at all. Disabled people in need are often ignored in the streets. And negative terms, such as the Twi word obubuafoɔɔ, are often directed at Edward and others. Edward himself isn’t too concerned with such language, at least when it’s is aimed at him – to him, his accident is simply something that happened in the past. He does admit, though, that his disability has become the primary way that many people define him.

In the years since his accident, then, Edward has noticed no positive change in how disabled people are treated in Ghana, whether by the government or by fellow citizens. To illustrate this further, Edward points out that the financial burden has actually increased – when his accident occurred, prosthetic limbs were covered by the government; but now there are significant costs that come with getting and maintaining a prosthesis. Moreover, disability legislation is still largely unknown and poorly understood by Ghanaian population, Edward included.

One cultural change that Edward does mention is how in his youth or earlier, infant exposure was purportedly practiced in some cases where babies were born with mental or physical disabilities. However, as the understanding of the causes of disability has changed, such practices have disappeared.

 

Family and friends

While some friends and family were crucial to Edward’s recovery, others have offered much less support or contact. The core of his support has come from his immediate family, his wife and children. It was them who provided physical and emotional support in the first days and weeks, when Edward was least able to move independently and when he feared his life was over. And they have continued to provide help in the years since. He has also received help of various sorts from many friends. Some have provided financial support, to cover medical costs and school fees. Others have provided support in more discreet ways, whether by making sure to visit Edward, or by walking at a slower pace to ensure that he isn’t left behind.

On the other hand, there are many people in Edward’s life who have been less helpful. His brothers and sisters, sometimes because of their own financial problems, have offered little help, so much so that it seemed at times to Edward like they had forgotten about him. Many friends, too, have stopped contacting him since the accident. And at work, some people showed little concern for Edward after his accident, and perhaps even conspired to get him fired. Others, however, helped him to transition into his new supervisory role.

 

Kofi standing out front of his houseWhat Edward’s story reveals is a situation in Ghana where there is wide recognition of many disabilities, along with institutional support through hospitals and clinics, but where profound social and structural problems persist and where better government support is sorely needed. As Edward readily admits, it is his family and personal relationships that allowed him to make it through the accident and recovery period, to obtain an adequate prosthesis, and to reestablish a livelihood. That reality means that others, those who cannot rely on the same personal networks, can and do face much more dire outlooks.

 

In his own words

“In the year 2008 I had an accident through a motorbike on my way […] from Akim Tafo to Bunso. [I was] sent to the Hospital […] for a surgical [procedure]. I lost my left leg below the knee about four inches down.[…] I worked at Bunso Cocoa College, but because I’m one of the amputees I’m no more to work like a carpenter again. So they have just stationed me at one point to supervise the workers; when they just come back from work I ask them what they have done at the field. And then I just put in a report.

“Especially my wife and my children [have] treated me very very well. They take good care of me. Because it was a time that I couldn’t go to the washroom. They had to help me to bathe, so on and so forth. […] And I have some of the friends who come to me and visit, […but] there are other friends who doesn’t come to see me at all. I don’t know the reason why. And my entire family, like my brothers and my sisters, they sometimes forget me.[…] Sometimes I feel very bad, especially about my brothers and sisters […] but we are not at loggerheads. When I see them I greet them. But it’s ok now.

“[When I was first in the hostpital] I felt very bad because I knew I could not get up again. [I thought] ‘That’s the end of my life; I’ll be in a position in which I cannot move’. But I have the advice from [a friend abroad] that there’s some special amputee legs which he arranged for me. And was able to get me one. And since then I’m happy. But at the beginning I was very worried.

“First I got the leg from the orthopedic centre at Nsawam, but that one was not all that good. Then [through and American NGO and] the head office of the Ministry of Health at Accra […I got] another one which is very good to me. So I keep going for changes when there’s a problem with it.[…] First it was free; this time it takes some money. […] It depends on the type of repairs you are going to do. The last time I was there, about three or four months ago, the foot busts so I have to change it. And then the clothes that I have to use for my leg. That takes me about 600 cedis plus. […] Some [repairs] are less and some are high. Even the brace at the leg is very costly.[…] I attended [the clinic at the Cocoa Research Institute in Tafo] for the dressing [on my leg]. After that, normally I don’t [visit the clinic] frequently. Sometimes once in a while then I visit the hospital.

Kofi walking down the street smiling

“Now because of my leg I can move to the bathroom, I can wash my clothes, and if I need food I can even go outside and take food. At my cottage I have some small land which I farm. So in the beginning I have it difficult and I need a lot of help for physical challenges. But right now I can move as the leg is fixed to me.

“The government organizations treat [disabled people] very bad. Because when there’s a fund to help, they don’t give them according to what they need. […] Some of them have wheelchairs that are broken and they find it difficult to push it. And sometimes too the crutches. […] Those things I think it should be free, but we pay for it. […And] most of us have children before this happens […and] they say there’s free education, but you have to purchase a lot of books and it’s difficult. So I think that if the government can help [us] to have free education for [our] children. […And many of us] don’t attend school at all and we don’t have any work to do. So those people too need a help. At least every month the little that they can afford, for them too. […T]here’s no insurance for disabilities, and that’s what is very needed. Because anything can happen that you just fall down or something can hurt you. So it’s good that all the disabilities should be insured by the government.

“The person who is [physically disabled] we call that in Twi obubuafoɔ, who use the crutches or use the wheelchair. […] Sometimes […] in case somebody’s looking for me, they somebody would just say: ‘Kofi, who is one of the amputees…’. [But] for me I don’t feel bad because it has already happened, and sometimes if somebody just were to describe you as it’s like the person doesn’t know you. Sometimes […what we] need, is like when you are in the bus the disabled should be first to take before [the others]. But a lot of people doesn’t buy it. And then at the same time when you’re in a queue, they should serve you before everybody but they don’t buy this.[…] So it’s difficult, isn’t it. People don’t just give [charity] out […and] it’s just like nobody cares about [disabled people in their community].”

But while not much has improved in the time since his accident, there have been some changes since his childhood and earlier:

“[There were few disabled people] from my childhood […b]ecause sometimes when somebody gave birth to such a baby they just said it’s a taboo. So they’ll just tell the mother your baby is from the water or tree or forest, they have to pass him away. They have to send the child to the big forest and tell the mother not to look back. But now we know that it’s never a taboo.”

 

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D19

D19 was born deaf, along with two of her five siblings. Now married to a deaf man, D19 has daughters of her own. Below, she describes her family life and living with deafness.

“Though my parents seemed to love all of us, they paid more attention to our hearing siblings than us. Because we are deaf they think we are not useful[…]. When I was young I wasn’t that happy, but when I got married I became very happy.”

“I went to deaf school but I couldn’t complete [it…]. I was struggling with the school’s activities, so I decided to stop. So my family put me into hair dressing. I learnt it for two years and opened my own salon.”

“[My family] used to support me when we were kids, but now I don’t get support from them[…]. The hairdryer I use to work got spoilt and I contacted people for help but they refused to help me. And my daughters are in school and I am paying much. So I am struggling to get money to buy one. [But i]f I have a problem I have to solve it myself.”

“I like being a deaf person because I have peace. I don’t hear what people say about me, and when you try to fight me I will not mind you.”

“People don’t isolate themselves from me; I am able to mingle with people, even the hearing people in programs, without discrimination of any form. Maybe the only problem I face is communication since most people don’t know sign language.”

“[M]ore deaf people are able to go to school now than previously. Previously, many parents used to hide their deaf children, but now you see more people taking their deaf children to school.”

“When I go to the hospital, I don’t like writing back and forth because I can’t write good English, and they also don’t have interpreters, so I take one of my children along to solve the problem. Because you need to explain everything to the doctor without hesitation.”

“Deaf people suffer too much. Even for deaf graduates the only work they allow them to do is to teach. Deaf people can also become police, nurses, doctors, but they don’t allow them to do it. They must allow deaf people to also do some of these jobs, because they can do [them].”

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D15

D15 was born able to hear, but an illness at a young age caused her deafness. She is currently in junior high school, enrolled at a school for the deaf in Koforidua. Below, she explains how she and her family have navigated the impact of her hearing loss.

“I am supported by my family. My parents have been supportive throughout my education. My uncles and aunties have also helped me a lot. I have not been very much involved in my family; because I am young and also because of my inability to hear, my parents did not think about getting me involved. I personally feel that because my parents and family do not know sign language, I do not need to involve myself. Everyone in the family have made me feel accepted. They understand my condition and they love me. Just that they all wish that I can hear again. I feel very much satisfied with family life.”

“I am happy as a deaf person but I want to hear again. I wish that I can speak. Hearing people are more successful and most of the jobs require communication by voice which is impossible for a deaf person to do. I will like to hear again so that I can get a good job to make my parents happy. I am proudly deaf but would like to hear.”

“[S]ometimes I feel isolated because of my deafness. I cannot hear about many things happening around me. And because society does not know and use sign language I cannot always mingle. Besides, some people used to call me with derogatory words such as ‘mumu’ and also insulted me. This made me so sad.”

“[And] because of the inability of disabled people to walk properly and the blind cannot see, they are loved the most and the attention has been on them more than the deaf.”

“I always went to the hospital with my father because there is no interpreter. However, a lot of deaf people still have access to the healthcare. I hope that government will help to employ sign language interpreters in the hospitals.”

“I am still a student and I have access to education presently. In the school the attitude of our teachers is very good. At other times it looks bad[…]. A lot of deaf people have access to education today because there are qualified teachers who are deaf. Deaf teachers are better than hearing teachers because they use sign language which we understood better.”

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D13

D13 was born with the ability to hear, but an illness at a young age resulted in his deafness. D13 is now a carpenter at a furniture company, but he has concerns about receiving the support he needs to establish his own business. Below are his reflections on the experience of hearing loss.

“When [my illness] happened, my parents took me to the hospital for medical check-ups.[…] I was not sent to prayer camps.”

“I attended normal school with my friends until I became deaf[…]. [L]ater I was enrolled into the School for the Deaf. I completed Junior High School but could not enter Senior High School because I failed my exams.”

“[Because] our teachers taught us by speech and I could hear my teacher’s voice a bit but my mates couldn’t, […] after lessons all my mates would come to me and ask me to help them. In the past we had more hearing teachers but there are more deaf teachers presently.”

“I have siblings who are hearing. Our parents’ attitude towards us has been the same. In the family there’s no preferential treatment. […However,] the family does not involve me in family affairs.”

“Being deaf, I feel that I cannot hear when my friends talk, but I try to listen at times by reading lips[…]. I really want to hear again so that I can communicate by speech.”

“I attend the hospital often. It’s all fine. More deaf people can go to the hospital but there are no deaf doctors. The challenge I faced in the hospital is whenever I went there I would sit for long hours – I could not hear if my name was called[…]. There are not interpreters in the hospital.”

“[The a]ttitude of people towards the deaf is better today than as happened in the past. […Yet] a lot of people are focused on helping persons who are blind and those with physical disabilities. The attention received by deaf people is not welcoming. Disabled people […] get information faster than us. When there is something to share among all disabled people, they will be the first […]. They always inform the deaf late. Treatment is not the same.”

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D6

D6 and his twin brother were both born deaf. After discovering this, D6’s parents sought various cures for the deafness, though without success. D6 was then enrolled in a school for the deaf where his step-father taught, and he is currently in senior high school. Here he discusses his experiences growing up as a deaf person.

“[When] my parents realized that I could not hear they sent me to the hospital for diagnosis and treatment. This didn’t work so I was sent to the priest and was given some bitter drugs to drink. Yet, I could not hear so my parents sent me to the traditionalist. We did not get the desired result. My mother was very much worried so she tried all the means available to her.

“When I got admitted to Kibi school for the deaf, the feeling was good.[…] I did not know sign language but I often went around to socialize with my school mates and […] I was feeling very much excited because my father was always there to help me.

“After junior high school, I asked my mother to help me to secure a job with a construction company, but this did not work out because I was told that until I completed senior high school I could not be employed.”

“With all the support I have received, I feel very much satisfied. When I was in need of help, the family always there. Anything I need, I received. My mother was very much supportive. [However] I do not feel very much included because I am very young and I have to take care of my younger siblings so I have not been included that much in the affairs of the family.”

“My parents believed that I had a future so they always threw their support behind me. They never wanted to leave me because I am deaf. In the family, whether you are deaf or hearing you will be treated equally. But I and my twin brother received much attention because of our deafness.”

“When I was very young, my parents took very good care of me. They did a lot for me in the past, but presently they feel that I am an adolescent now and I can care for myself, so they do not offer the same treatment. The way deaf people are treated depends on their families. I think some of them who have a good family background are better treated than those from poor families. Other families left their deaf children.

“I think other disabled people are treated better than the deaf. The idea is that most people believe that deaf people can do anything; they have eyes, they can walk, they have hands and can do so the people do not see any problem in a deaf person. People feel that the condition of other disabled people is more dangerous so they pay more attention to them than to the deaf.”

“I wondered why I became deaf. I feel that I am saved because for some people if you are deaf, your family will not take good care of you because the idea is that if you are deaf you are useless. But I have come this far with the help of my parents and I am very much happy for this.

“I am in school now and this makes me proud. I never feel worried as a deaf person. I am very happy because I know that it was the purpose of God. I want to be successful in the future as a deaf person. I never want to regain my hearing ability because hearing comes with lots of negatives. For example, people insult you and you can hear them, which can easily make you angry; but in the deaf community things like this oftentimes have been taken as a joke. If I were hearing, a lot could have been said about me but as deaf person, I am free and cannot hear all these. Hearing people deceive, so I do not want to become like them. I am happy as deaf.”

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D5

D5 was born able to hear, but became deaf at a young age. As she says, “I was sent to prayer camps and hospitals for a cure, but all to no avail.” From that early age, D5 has navigated life as a deaf person.

“[M]y father went to Winneba to look for a school for me to attend.”

“I went to Hohoe school for the deaf when I was five years old and I completed in 2014. I also had access to secondary education but couldn’t continue due to financial challenges; so I went into dressmaking as a profession. All the teachers took good care of us and our relationship grew fine. But the use of sign language was a problem because most of our teachers at the time could not use [it].”

“Access [to education] has improved well, and teaching is progressing steadily, and enrolment is increasing because of the high birth rates of deaf children.”

“Access to healthcare is good now. Deaf people get assistance from doctors and nurses all the time. Previously, we used to communicate in writing on paper because there was no interpreter, but today we have some interpreters who accompany us. The availability of sign language has given room for more deaf people to access healthcare.”

“My family members felt guilty when they found out I was deaf, but I do not feel sad. I am happy as a deaf person and I feel satisfied with all the support I have received from everyone.”

“[But though] I am deaf I wish that I could hear again because it would enable me to understand better. If I am able to hear, I can speak with [friends and family] and sign language will not be needed.”

“People have called me ‘mumu’ because I cannot hear and talk. This hurts badly, but anytime my friends or relatives heard about this insult they would come to my defence.”

According to D5, “[h]earing people think that deaf people cannot do anything because they cannot hear. This is a wrong impression and must be changed.”

At the same time, though, D5 has noticed that “most disabled people had better treatment than the deaf. People see their condition as something that deserves special attention and needing better care. People believe that deaf can do everything except to hear.”

“I share my concerns or problems with the leadership of the deaf community in my district and a few of my friends. Whenever I do, they take time to sit with me, advise, and encourage me.”

“[A] friend helped me to look for employment and I found work at the University of Education in Winneba. At work, the relationship between me and my boss was good.”

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Blindness 1

Edited by Cameron Baer

This is the first of twenty anonymous testimonies collected in the Eastern Region from blind interviewees in February-March, 2018.

“I was at Sefwi when I first experienced trouble with my sight. Visits to a number of hospitals quickly confirmed a diagnosis with glaucoma. Despite efforts to combat the illness, it was not long before I was completely blind.

As owner of a cocoa farm and father to several children already advanced in life, the consequences my blindness were not as debilitating as for some. I am not burdened with the need to support a large family, most of them having already moved on with their lives, and the cocoa harvest brings in sufficient monetary support. Even so, the effects on my lifestyle have been acute and difficult. I am now entirely dependent on one of my children, whether it be dressing, bathing, or leaving the house; once an avid traveller, the farthest I travel now is to my farm, or to the hospital for medication.

Despite my abrupt turn of fortune, I am able to “live together in harmony” with my community members. I have never been referred to in a derogatory manner related to my condition, and many in my family and the community show concern and care for me. If my own child cannot look after me, children in the community will do so, and local friends will call on him occasionally.

While I have not suffered any overt discrimination, my relationships with my community and family are nevertheless mixed, as a more passive sense of apathy colours my situation. My family, while not inconvenienced by my condition, do not consider it their responsibility, aside from occasional visits. I am also hesitant to speak about my situation with the community. I once shared his feelings with select friends in my local church, but even this emotional outlet has closed as of late.

I simply wish not to bother anybody with the challenges of my condition, physical or emotional. I rarely leave the house, and I have never asked for assistance from any community or government institution; even after government support payments dried up, I refused to raise his voice, in spite of my feelings on the matter. I don’t seek employment outside of my farm. How can someone who is blind work? How on earth is the person going to get a job?”

I do not expect anything from my community, a feeling that is apparently mutual.

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Charles

We met Charles on an overcast day in the Eastern Region of Ghana. In the excerpt below he describes the source of his disability and challenges of education for disabled children:

“I am almost fifty-nine years old. My disability started when I was young, according to my mother I was three years old. She said she injected me and it caused polio. When you are a child, you don’t feel that you are (disabled) because you used to play with all, especially kids. But when my friends started to leave for school, that is when I started to realize, oh, no. Something is short in my life. I studied elementary and middle school in my hometown.

 

My biggest concern was that…I wrote common entrance exams, I think 1976 I passed very well to go to school but because of my disability… When they sent me there all the buildings were storey and I couldn’t climb so that prevented me from going to school at that time.  Also, all my friends I started with, when they finish school they will leave for higher education. So the number of people I was playing with reduced, because they all went and I was left alone. My education was a great concern to me. After I came out of school, in 1977 I learned shoemaking … I started doing it for some money.

Then I had everything to go to teacher training college. I went to training college 1987. When I was looking for admission to enter training college, the principal told me she will not accept me. Why? Because some disables came there, the way they were misbehaving, it wasn’t possible to sack them, it wasn’t possible to punish them (laughing). In fact this made me to stay home for almost a term, so it was some elders who went and spoke with them that she doesn’t know the kind of person I am. The principal is from my hometown and by the grace of God I made her happy, I didn’t do anything bad.”

Despite the barriers Charles describes above, he graduated from teachers’ college in 1991 and his now employed by a primary school in the Eastern Region.

 

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Naomi

We interviewed Naomi in her home in a town in Ghana’s Eastern Region.  In the interview she told us about her experience raising a son with severe cerebral palsy, and the lack of support form her husband and his family:

“My son was in born in 2006.  When I was going to labour the nurses were on strike…the midwife [was young]. Around midnight the day of his birth he started to cry … he cried continuously for two weeks and he started to deform. I sent him back to the midwife and she said that his veins has become green and she told me that she has been infected … so she directed me to a man (a herbalist) who treated him for three months. He became very nice but his breathing was like someone who has a cold.

It continued like that so when he was 4-5 months, I took him to saint Joseph’s [hospital] at Koforidua. When I was in Koforidua they gave me a specialist (who) told me he was born with a particular sickness (cerebral palsy). I used a lot of herbal medicine. At the beginning, his father was helping, and later he took me to a prayer camp and we stood there for 6 months. We tried but there was nothing new. So when he was 11/2 years I informed the owner of the camp that I want to send him home.

When he was one year eight months, I had information that people from Salvation Army [hospital] were coming to Presby so they invited me and I went. They told me they will put him on physio because his sickness is only physio that can help. I came to tell his father … but he didn’t agree. I didn’t have any work in that time so I couldn’t send him by my authority. One day I met a certain doctor and he referred us to Korle Bu (hospital in Accra). They gave us a doctor and they divided the care: neuro, physio and others. One of my husband’s friends was a doctor in Korle Bu and for him his child’s problem was autism. So he was the one who advised my husband not to bother himself with caring for the child. Whether good or bad if he will get up he will.

Later (my husband) informed me that his family members are saying all my children will be sick so he should divorce me. He stopped caring for the child. My grandmother brought me up with farming, so I took the machete and told myself if this child should be well, I will farm and whatever I get I will use it to support him. I was doing vegetables only, so I started okro farming little by little…I was doing it by myself. Though his father was not helping, with a little farming I was able to get the money for (medication). Later I added palm oil making. I was doing palm oil.

 

All the family wish is that we all pray and he dies. Some said he is a river child so ‘yen k) gya no kwan’ let’s go and kill him. My husband said the best thing is that we agree and pray for him to die. As for my family, I don’t get any help from them, I remember last year my brother told me there was one sister abroad, her child had similar condition, they ‘k) gya no kwan’ went and kill the child so I should go to the place she did hers and do same for my child to be free. I told him I can’t.”

 

 

Naomi continues to care for her son on her own, without any help from her husband or family. She relies on income from farming activities at her home, including palm oil, vegetables and root crops, chickens, goats and a fish pond.