Welcome to the Chronic Care Matters podcast, a conversation series of the Chronicity and Care in African Contexts Project.
Chronic Care Matters features conversations with individuals and caregivers with personal experiences of chronic illness, and with researchers, health professionals and advocates who are working with African communities on the continent and in the diaspora. We explore life stories, as well as themes like food, faith, medicine and the mind – tools we can use to prevent and manage chronic diseases, to care for ourselves and for loved ones who live with chronic diseases, and to support caregivers. Thanks for joining us.
Today, Dr Ernestina Dankyi (ED) speaks with the Bedweis. Mrs. Lydia Bedwei worked as a translator and an interpreter with international bank for West Africa in Lagos. She resigned shortly after having Farida because she realized she could not combine a full time job and the care demands of raising a child with cerebral palsy. She has been described as “intellectual in her own right, a top bookseller in Ghana, who not only made a fortune from selling books but gained tonnes of knowledge in the process”, knowledge which is reflected in her recently published masterpiece, “the unconventional mother”. She likes to describe herself as a ‘Makola child’, a child raised by a strong market woman operating from Ghana’s biggest market, a place where she acquired invaluable lessons and skills which later became her biggest assets throughout her over four decades’ journey of raising her miracle child, Farida. She is passionate about helping other woman and families who have children with cerebral palsy by sharing her story on any given platform. She joins us today with her daughter, Farida Bedwei who has lived with Cerebral Palsy all her life.
ED: Good morning Mrs. Lydia Bedwei and Ms. Farida Bedwei. Thank you so much for doing us the honor and being on our Chronic Care Matters podcast for this month. We are happy and excited to do a mother and daughter interview. We haven’t had the chance to do that, so we are very excited about this. I would like to start by asking you to tell me a bit about yourselves. I am not sure who wants to start, who would like to go first, Mrs. Bedwei or Ms. Bedwei?
LB: What do I tell you about myself? I am just an ordinary mother who gave birth to a child with a disability. It took us a whole year to actually identify there was a problem, although I knew there was a problem from the onset. The doctors thought because she had an operation when she was born, her development will be slower than the normal, so I should look at it that way. So that was how it started.
ED: Your response has been tied to Farida, who is Mrs. Bedwei without Farida?
LB: Mrs. Bedwei without Farida was a translator and an interpreter working with international bank for West Africa in Lagos. Farida is my second child. I had a first one, and when she was 2, Farida came along. That was where my journey with Farida started.
FB: I am a tech entrepreneur, a disability right advocate and a writer. I have cerebral palsy and I have lived with it for my whole life.
ED: At this point, would you like to educate us on cerebral palsy?
FB: Cerebral palsy is a condition that affects the motor development of the person. It affects the way you speak, the way you walk and the way you move your lips. There are no two cases of cerebral palsy which are exactly the same. It also affects more males than females, and the males often get it a bit worse than the females from what I understand. Mostly a lot of focus has been on the children but I always say the children grow up, so what happens when they grow up? Recently there have been a bit of research going into adults living with cerebral palsy. It is not very extensive but at least people have realised that there are a lot of adults with cerebral palsy in the world these days, who are going through certain things which is worth talking about.
I am a tech entrepreneur, a disability right advocate and a writer. I have cerebral palsy and I have lived with it for my whole life.Miss farida Bedwei
LB: Cerebral palsy affects your hearing as well as sight, but we were lucky the hearing was just the high frequency sounds so she had to use a hearing aid, because any sound which is ‘sssss’ she won’t hear it. Luckily, she didn’t get blind too, because the part of the brain that was damaged according to the doctors in London could have affected her sight but we got away with it, and it was just the high frequency sounds that she could not hear. It was not just the motor development which was the main issue, but this cerebral palsy came because of the Jejunal atresia which she had at birth. The blood incompatibility was not paid attention to until after the tenth day after the surgery, that’s when they started looking at it by which time the damage had been caused already.
ED: Mrs. Bedwei you mentioned in your introduction that it took a whole year before you noticed or it was firmly detected. So, was it diagnosed then or it took a while before?
LB: It was diagnosed then. I had her St. Nicholas hospital in Lagos and we were doing various things, because after six weeks in the hospital coming out, it wasn’t smooth sailing. There was vomiting, there was this and there was that. So, we had to keep going every week and they did a barium meal and they realised she was Glucose 6 Phosphate Dehydrogenase (G6PD) deficient [a hereditary condition in which red blood cells break down (hemolysis) when the body is exposed to certain foods, drugs, infections or stress]. With all those problems, they were just paying attention to what they were seeing, but I was also paying attention to the milestones which were not happening, that is she couldn’t sit well and her neck was tilting to one side and the other. So, on her first birthday I decided to take her out, we went to the Great Ormond Hospital in London and after the scan, that was where they detected this was what had happened and treatment immediately started from there. So, they did the scan and I went back the following day to collect the report. And the neurologist said, Mrs. Bedwei you are here, and I said yes. And he said I have good news and I have bad news, which one do you want to hear first and I said I want the good news. Then he started, it didn’t affect her intelligence, it affected this, it affected that and I was wondering what ‘it’ was… then I said OKAY let me have the bad news. It affected her motor development and he said that although it affected the part of the brain that was damaged, I could train the undamaged part to do what the damaged part was to do. It was a thorough diagnosis.
ED: Thank you. Ms. Bedwei will you tell us, you mentioned in your introduction that you have lived with this all your life. Would you tell us what you would say have been the challenges that you have to deal with and I am looking at in terms of access to health care, social support, issues of stigma, diet. Is there anything you would want to share?
FB: My problem has been more physical than anything else. With regard to diet and the others, sure I am G6PD, but apart from that I can virtually eat anything and it is not like I need a special diet or anything. But there are people with cerebral palsy who cannot chew or cannot eat, so they have to get strange meals like babies. I was lucky I didn’t have those problems. So, most of my issues are more of things to do with the physical rather than diet, like chewing. For me this is all I know I don’t know anything else. This is my normal life and I don’t think I am being deprived or lacking in anyway. Because I feel like I have got one of the best family that anybody can have with or without a disability. I feel that I have been blessed with abundant intelligence which has made me who I am and I don’t take that for granted. And I feel that I have made the best life that I can make with my condition or with where I am. Because people with disability in Ghana, are not having it easy, aside the societal perception there is basically no support from the government or from anywhere, when you have a child with disability. Unlike the UK where you have allowance, but here it is just you, your family and your God. And apart from that you have to continuously prove to society, so that other people with disability will also have the opportunity to also prove themselves. So that has been my main aim to show that, yes, you can have a disability, live in Ghana and still be a success story.
ED: And that was going to be my next question. So I was going to ask you, I know that you have made your mark and your name in the tech industry and you are still doing it. You are an author of best-selling books; you have made your mark in philanthropy and you encourage people. You have done so much in your short or long life living with cerebral palsy. But which of these would you say has been your greatest achievement?
But there are people with cerebral palsy who cannot chew or cannot eat, so they have to get strange meals like babies. I was lucky I didn’t have those problems.– Ms Farida Bedwei
ED: And that was going to be my next question. So I was going to ask you, I know that you have made your mark and your name in the tech industry and you are still doing it. You are an author of best-selling books; you have made your mark in philanthropy and you encourage people. You have done so much in your short or long life living with cerebral palsy. But which of these would you say has been your greatest achievement?
FB: I think I don’t want to focus on one thing, because every aspect of my life is equally important. So the tech aspect is important, the disability right advocacy is also very important. I haven’t really been able to marry the two very well, which is fine, but I have been successful on both sides. I co-founded a tech company ten years ago. I have also started a new one which I am hoping will be more successful than the one I co-founded a decade ago. For me it is just like keep going, keep pushing to see how far you will get to.
ED: Thank you. Mrs. Bedwei. I was talking to Farida about some of the challenges that she had to deal with, and would want to come to you as a caregiver, as a parent, a parent of a child with cerebral palsy in Ghana what have been some of your challenges?
So that has been my main aim to show that, yes, you can have a disability, live in Ghana and still be a success story.– Ms Farida Bedwei
LB: Initially I knew that in Ghana, accepting people with disability is a problem. So initially I had to build her up not to pay attention to what was happening around her. I was like a pied piper of Hamelin, I took her everywhere I went and people followed us wherever we went, of course from a distance. Initially, she was a bit apprehensive but after I explained everything to her, we both took it in our stride. There are challenges, honestly, because we lived in a little island where the facilities were not that great too, but I was able to build that fence around her, where I was doing everything myself; the therapy, physiotherapy, occupational therapy, and teaching her at every point in time. When we first came back, having done the teaching for 11 years over there, I was wondering how are we going to continue. I started her off with a home computer and were fortunate that wjen we came back home, everybody was attending a computer class of a sort. So I enrolled her in a computer school in Lartehbiokorshie called Advanced Computer Systems. This was the school where the doctors from the Korle Bu Teaching Hospital went for their lessons. So I enrolled her there and she did very well. One day when I was going to pick her up from school, on the corridor I heard her saying if I teach you, you will pay 5cedis, so when I picked her up, she said Mummy they don’t know anything. So I realized that we will be successful in doing this computer thing. She did Microsoft word, excel and Dbase. When she completed, the owner of the school called me aside and said “Madam in fact I have to confess, when you brought this child, I just thought here is somebody who has money and wanted to waste it” and it turned out he was mistaken. So he told me his confession. Now we finished and we were at home and I was thinking now she has no friends so what do I do, so I am just her teacher, her mother, just the two of us. So, we had to look for school for her, where she can just go and make friends because I teach her at home. And so, her father and uncle went round and found Cambridge Preparatory School at Atico, a suburb of Accra and we put her there. I always had to be sure that the terrain was suitable for her to move around. She only needed to walk a few steps from the car to the classroom. There were no staircases or anything so it was okay, at Korle Gonno. You have to be practical about these things to know what can be done, and what cannot be done. She did one semester there, she made friends, she got two girls who were friendly with her and helping her to go to the loo and I was very touched. So, every afternoon when I pick her, I will pick them (the friends), they live in Korle Gonno and I will drop them. I was very relieved that she had made friends, you know going through all that period I just wanted her be like everybody else, that was all I was aiming at. So, she made friends, she was happy and was like everybody else. Unfortunately, I had to take her out of that school because my business was at Kaneshie and I was going to Tema and coming every time.
FB: The school was actually closed down because they could not pay their rent, so they were sacked from the building and everybody had to go to a different school. After that I went to Kaneshie Awudome 1 Junior High School (JHS), which was a public school. Even Cambridge was a public school. Cambridge was there and the government rented the place from them and used it for a JHS.
ED: So how was the experience at Awudome?
FB: Awudome was very good, I also made friends there. I always say children don’t discriminate; it is the adults that instill it in the children. Because if you put a disabled child in a batch of children, you will see the children move to play with the (disabled) child. So far as they are concerned, the child can’t do the things they do, but the child can also do something. So, the parent should focus on what the child can do. I used to walk with my friends all the way from Awudome to Kaneshie after school. Even when we were at Cambridge, we walked all the way from there down to the beach. They used to hold my hand and we walk, so they didn’t even know what I had. In fact, it was years later that one of my classmates had a child with cerebral palsy and she heard me talking about it and she was like that is what you had all along… and I said yes, you didn’t you know and she said “No”. Because it didn’t even occur to them to find out what Farida had or why is Farida different or whatever. So far as they are concerned, Farida is another child, there are things she cannot do but we are willing to help her and I had a good experience in school.
Initially I knew that in Ghana, accepting people with disability is a problem. So initially I had to build her up not to pay attention to what was happening around her. …There are challenges, honestly, because we lived in a little island where the facilities were not that great too, but I was able to build that fence around her, where I was doing everything myself; the therapy, physiotherapy, occupational therapy, and teaching her at every point in time.– Mrs Lydia Bedwei
ED: That was social, that was good. In terms of infrastructure and facilities, how did that work?
FB: The infrastructure obviously wasn’t the best. I remember at Awudome there was a big gutter to cross, so every day you have to jump over a gutter.
LB: When I park the car, I always have to take her over the gutter to get into the school.
FB: The infrastructure wasn’t the best, there was no toilet so you have to go and squat and all that.
ED: And you did all that?
FB: Yes, I have to, it wasn’t the best but I made it work. I was able to make it work because of the support of my friends. There was no way I could have survived without having some people who were willing to help. And up to now it (the school infrastructure) is still not friendly, we had a reunion there about a couple of years ago – the terrain is still not friendly.
LB: When you put your child in a public school and she is having a writing disability too, I mean she was writing but I was worried about exams level. So when it came to writing the BECE I went to Ministry of Social Welfare to see the minister to tell him about what my situation was. He handed his permanent secretary to walk me through process. They told me to go to special education and talked to them there and they (special education) also said I should go to exams council. So, I went to see Mr. Katsriku of blessed memory, he was the director of administration there (exam council). I told them what my situation was, I told them she can do it but she can’t write the way everybody else was writing, to be able to do what she has to do. So, one day I went to the school and the headmistress told me, Madam, three big men came here and I said three big men, who are they? And she told me from Social Welfare, Special Education and Exams Council, they went to look at her (Farida) exercise books and writing and all. They called me and assured me that her writing is somewhat better than some people who are not disabled but what they will do is that they will ask them to give her extra time to be able to do the exams and also put a note on her paper to say this is a special case. That was how she was able to do the BECE.
ED: Mrs. Bedwei, one will say, that was very brave of you because in a public school and I can imagine many parents will be afraid of how their children are going to cope. So how did you do it?
LB: I have never been afraid of being frontal, and especially when you know you have a child with disability and you know you are at a disadvantage, I walk boldly in to present my case and it is up to you to fret around it and decide what you are going to do. I was never timid. I keep telling parents go boldly and they keep saying if you say it the doctors will say you are ‘too know’ and I will tell them when the doctor comes to his consulting room and no patient comes what will he do, he needs you and you need him so don’t let it be as if he is doing you a favor. I always have questions, when I had her and the doctor forgot to give me the injection for the blood incompatibility, because I am O-negative and the father was A-positive and apparently this needed to be done but at the time I didn’t know. It was when the baby had come, Ayesha had come before the following day I read in a magazine that I have subscribed to that this was the procedure. So, I asked my Obs and Gynae (Obstetrics and Gyanaecologist) and he said he is sorry he forgot and said when I am having a second child, he will do blood transfusion or whatever. But as fate will have it, it wasn’t possible to do it because when she was 2 days old, she had to be operated and her intestine had to be cut and all that, so they concentrated on that. So, boldness is my middle name. I walk boldly into any room. One time when we went to Miami and the neurosurgeon was like I should leave the child with him and that he has to have a private meeting with the child but I told him it is impossible because when I am not there, she will cry but he insisted. So I walked out of the room went behind the door, she kept on crying nonstop and after a few minutes I went in and took my child. He said he was trying to help me and I said this is no help. He said he will give me medication to calm her down and I said she is not taking medication. He said, he is trying to help and I said well I am supposed to train the other part of the brain that is not damaged to do what the damaged part is supposed to do. How can I know what her reactions will be if she is dulled with a medication? So, in a huff, he wrote in his report, “mother refuses medication”. This was a referral from London sent to the doctor there and I explained to the doctor and he said “fine”. And over the years as I was going along with her, the doctors were telling me the pros and cons. In Belgrade, they told me everybody will want to operate on her Achilles Tendon, the decision is mine but I shouldn’t give in to them. That the success rate is 50/50 so I decided not to do it. You say it and I will say I will not do it, I will do therapy. So boldness is my middle name.
In fact, it was years later that one of my classmates had a child with cerebral palsy and she heard me talking about it and she was like that is what you had all along… and I said yes, you didn’t you know and she said “No”. Because it didn’t even occur to them to find out what Farida had or why is Farida different or whatever. So far as they are concerned, Farida is another child, there are things she cannot do but we are willing to help her and I had a good experience in school.– Ms Farida Bedwei
ED: Boldness is your middle name. Mrs. Bedwei I was asking Farida what she consider her greatest achievement. And I also want to ask what are you most proud of her, I know it will be difficult to…
LB: Proud as far as what?
ED: As Farida as is concerned.
LB: That she turned out the way she is with her boldness and self-assertiveness. She is really self-assertive that even people with no disability aren’t, and I am very proud of that. I am very very proud of that. You know I started her off with reading at the age of 3 or 4, she is very eloquent, her vocabulary range is very vast. I am proud of all those things because I cannot single out a particular achievement because she is a whole human being with different spheres. But what I am not so happy about is that she has constant pain, my prayer is that God should reduce that pain because she has a lot to deal with in her life. And up till now she still has pains but God knows.
ED: Ms. Bedwei in your book, “The Definition of a Miracle”, you hinted how people had always come and offered spiritual help to heal you and also you have talked about it on your social media posts. I just want you to hint briefly on how you felt and still feel about all of those things. Because parents are paying huge sums of money and are been told that their children could be healed of different kind of chronic conditions.
FB: So first of all, let me start by saying that I am a Christian and as such we believe in healing, we believe in miracles and all those but sometimes God puts you on this earth in a certain condition for a reason. And it is up to us to realise what our destiny is and what our purpose is in life. So once you are able to realise that, okay, God put me into this body so I could help other people with disability, you realise that okay it is not the end of the world, there is so much you can do within your circumstance, then I realised it is alright if I am not healed. Now, I always say that those people who are taken to a miracle service and are prayed for and nothing happens, how do you think the person feels? In this part of the world, we don’t pay attention to mental and emotional health issues, that thing can make somebody lose their faith and can make people go into depression especially people who are very up with their faith who believe that God will heal me because the Bible says whatever. So sometimes you have to realise that like Paul who had that thing with his sight which up till now nobody knows what it was but they said he prayed to God to remove it and God told him my grace is sufficient for you. Sometimes we have it in our plans in life to have something on our side but we have to learn to live with it. I always tell people especially those in ministry that if God hasn’t told you to heal anybody don’t do it because at the end of the day you end up causing more harm than good. You make the person doubt their beliefs and all. I stopped going to church for 5 years, when I turned 18years. I told my mum that I am now an adult and I am not going to church again. Because I am fed up with this church thing, sometimes you go to church in a state of anxiety because you don’t know whether somebody will decide to impromptu hold a miracle service and call you to the front. And as a young girl, the last thing that you want is unwanted attention because you are already self-conscious and suddenly you are dragged to the front and everybody prays for you and nothing happens. You cannot imagine the amount of emotional and psychological turmoil that happens. So I stop going to church for five years and it was only when I was in the UK at the university that I started going to church again. At least there I know that there will be no healing service or anything like that. It is more a charismatic church run by a white family and at least it was safe. I mean the church should be somewhere that you are safe, it shouldn’t be a place where you are filled with anxiety and you don’t know what will happen.
ED: Thank you. What advice would you give to somebody with cerebral palsy and is struggling to figure out what to do on a daily basis let alone achieving half or maybe a fraction of what you are doing.
FB: So believe in yourself, and believe in your God. And I will also say that find out what you can do and find out what interest you and figure out how to make it something you can live on. Because what we have realised is that, I am on various cerebral palsy groups on social media, and there is something happening amongst those in my generation. So most of them who are fully reliant on government, their parents are old and some of them had died. They don’t know what is going to happen to them because this is a generation of people who were not put in homes, they were looked after by their parents. And their parents are now in their 70s and 80s and some of them had died so there are a lot of anxiety for them; “what happens to me when my parents die? “do I now go into a home”? “I have never been in a group home”. So, I always tell them to try and find a way to be independent possibly. So that when your primary caregiver or your parents or whoever dies you will still be able to survive. If there is something that they are capable of doing, they should find a way to let it generate income so that they can have some form of independence.
Because I am fed up with this church thing, sometimes you go to church in a state of anxiety because you don’t know whether somebody will decide to impromptu hold a miracle service and call you to the front. And as a young girl, the last thing that you want is unwanted attention because you are already self-conscious and suddenly you are dragged to the front and everybody prays for you and nothing happens. You cannot imagine the amount of emotional and psychological turmoil that happens. So I stop going to church for five years and it was only when I was in the UK at the university that I started going to church again.– Ms Farida Bedwei
ED: Thank you. Mrs. Bedwei we were talking about what advice to give to somebody living with cerebral palsy. And in your case what advice will you give to a parent and a caregiver especially on a tangent where people approaching parents that they are going to pray for their children to get healed, extorting money out of these parents and caregivers. What advice will you give generally and in that regard?
LB: I know parents are vulnerable, they are very vulnerable. Because when we came back to Ghana and a girl who lived with me told me there is somebody in Gbegbeyise beyond Dansoman who can heal her (Farida), I didn’t think twice about it and if you tell me to dig a hole and she will be healed there I will do it. So, parents are really vulnerable in this, but with experience I know there is no magical way of solving these problems. You have to put in the work. Parents have come to me through Farida, many of them have come. Sharecare (an NGO) got a bus and brought about 12 of them here with their children and advise them. I take them to the grass root, if it is the hand, I showed them the exercises they needed because Farida was closed fisted for a long time (Farida chips in literally). And when she was 18 months onward, she didn’t have a language and she was making her own noise, so I had to do the speech therapy for 10 months, every day, 5 days a week, one hour every day. It is consistency. You cannot do it haphazardly, i.e I have done it for one week or one month and it is not working. With the exercises for instance, you will do it maybe for 6months before you will see her open her fingers and start to do something. I tell them to reward the child and, in those days, I just used happy faces, just putting these stickers on her bag or her hands and you rejoice with her and give her an ice cream, there she knows she has achieved something. And you work on it from there. As I was telling you earlier on, you get a timetable for them if you want anything at all to happen, so they know at 6 o’clock they do this and at 8 o’clock they eat and at 9 o’clock you do certain things with them. And even if your time is limited you have to allot a certain portion of it and the child will give you her/his attention during that period because it is just the two of you. And whatever it is, you see him or her actively trying to do something and when not participating you get to know something is not working here. But you cannot sit there and expect it will happen, it is hard work and it is more than a nine to five job. Don’t sit there and say I have done 3 months and I am not seeing the results so I am stopping, maybe it is the fourth month that the results will start showing. So, it is patience and consistency, continue doing it. And when you go for physiotherapy and it is being done, as I was told earlier on in Belgrade, I bring the child for only an hour, (the remaining) 23 hours the child is with me. So I have to be doing it. Even when I am in the house and get a visitor and maybe I have to get up and give the person water, I have to show her to do the finger exercises this way and that way while I am getting the water for the visitor. That’s my training, let me put it that way. Some mothers will call you and tell you what is wrong and they feel like you should have the answer. And when you are telling them what to do, they feel like it is something that they have to do for a week and it is over. You tell them it is the brain that is dead in a certain way, part of the brain is dead and this is a training process. You have to train the other part to take over the workload of that cerebellum or basal ganglia or whatever. Consistency, have a schedule and follow it. For a long time, Farida was following that schedule. She will eat no matter what you are doing, at 12:30, At 6 o’clock she will eat, and in the morning by 8 o’clock she has eaten. A little example, when we were in Manchester my brother would come and want to take her from my hands but he always came around 12 thereabouts and I tell him that, “Kofi, it is the wrong time”. At one time he said I don’t want him to help me or take my child. So when he came I told them that they could go and they sat in the car and as they were going, the two of them (Farida and uncle), Farida has always had a watch, so as they were going, she tapped him and said “uncle what is the time”? And he gave her the time and 5 minutes later she tapped him again “what is the time” and he started suspecting that maybe she is hungry and so he went and parked at a filling station to bought some crisp different ones and put it in her bag. After that she tapped again and ask what is the time and now, he parked the car and asked what is the matter and she said it is time to eat and he said but I have bought you crisp and she said no she has to go home and eat proper food.
I mean the church should be somewhere that you are safe, it shouldn’t be a place where you are filled with anxiety and you don’t know what will happen.– Ms Farida Bedwei
ED: How old was she?
LB: She was like 5 or 6 years. So Kofi came back and said Lydia you said it and I said I told you, you are my brother, how would I stop you if you want to help me. When we were in the West Indies, she was 3 or 4 years, her physiotherapist took her to spend a day with her, at around 12:30 she called me and asked what is proper food? And I said proper food is cooked food, rice and stew or something. And I asked “what did you give her”? and she said chicken sandwich and I said that is not proper food…and said that is for dinner or breakfast. So, the routine was that, in the morning it will be tea, cereal or whatever she will eat that. And in the afternoon, it will be proper food and, in the evening, it can be sandwich. We got to London in Watford, my friend was giving us lunch, she has made ‘’aboboi and Kakolo’ and we were all sitting at the table and all of a sudden she said mummy, mummy she is putting sugar in my lunch, and Gifty (friend) was like Lydia what have I done and I said sugar is for breakfast alone. And she has never eaten ‘Aboboi’ before.
ED: That didn’t qualify for proper food for the time.
LB: And you know, I told the mothers that it will help them too, because with the routine when it is done the child is settled, and you can also do something.
I know parents are vulnerable, they are very vulnerable. Because when we came back to Ghana and a girl who lived with me told me there is somebody in Gbegbeyise beyond Dansoman who can heal her (Farida), I didn’t think twice about it and if you tell me to dig a hole and she will be healed there I will do it. So, parents are really vulnerable in this, but with experience I know there is no magical way of solving these problems. You have to put in the work. Parents have come to me through Farida, many of them have come.Mrs Lydia Bedwei
ED: Mrs. Bedwei at what point do mothers have to tell themselves this is my full-time job, to say. Because some parents think I can do this and do that, it takes some a long time for them to come into terms that this require all of their attention, and when it does then they are distraught and frustrated. At what point do you tell yourself this is going to be my life, is it after diagnosis or?
LB: Right after diagnosis, I realized that everything depends on me and I have to do it. And I didn’t know much about it and what to do. But I saw the chief physiotherapist over there and she gave me prompters and a book, and everything as to what to do. And then you have to see that in doing these things, how much can you cram into an hour. Initially I took time from work because I was still working. When I realized this thing can’t go hand in hand with work I had to stop working. But as a mother when you have a problem like this, you have to start thinking about what you can do from home or aside. And me being a Makola child I knew that because I grew up with my mother selling in Makola. So, any little thing I can lay hands on, I see to get a little thing here and there. That was how it was.
ED: Let talk briefly about COVID-19 especially last year, how was your experience with COVID? Let me start with Ms. Bedwei.
FB: For me the mask has been a problem for me, I use a lot of energy when walking so when I am breathing I breathe harder than the average person. So, wearing the mask and walking makes me more tired, than without the mask. But apart from that it was alright, obviously if there are places that you don’t have to go to you don’t go. But seeing now it is not going away anytime soon, we also have to find a way of living normally with it. Not living in constant fear of COVID and luckily, I have been vaccinated to reduce the chance of getting it.
ED: Were you hesitant about vaccinating?
FB: No, I wasn’t. I was waiting for my turn so that I go and vaccinate. I wasn’t hesitant at all because I am not having any autoimmune condition that may cause a problem.
ED: What are your plans for the future?
FB: I am still going to try to raise awareness for people living with disabilities in Africa. Because I feel that there is a lot that needs to be done and as I told you I am building a system to be able to see our numbers so that we will be able to see what really happens to (people with) disabilities in Ghana. Let’s face it, knowledge is power, and we can’t advocate effectively if we don’t have the data to back it. But right now, we are trying to get attention from the government but the government is not minding us because they don’t know how many we are. They did the census and they were supposed to record people with disability, and they didn’t ask my mum whether there are people living with a disability here, so obviously I wasn’t added to the people with disability.
ED: So, it means that if you don’t offer that information they don’t ask.
FB: Apparently, the census people were actually insulted a lot for asking people those questions. So obviously they were reluctant to ask, because of the societal problems we have with disabilities. I think while we have that system in place and we have seen the numbers we will be able to advocate better. Especially, when it is time for election, we all know that election time is when things get done. As well as other systems that impact society positively for disabilities in this part of the world.
ED: Great. Mrs. Bedwei, I want to ask about your plans for the future. But I want to ask more specifically in relation to ‘the unconventional mother’, your newly published book. I know it will be hitting the stores in Ghana from October. Would you want to talk a little bit about the book and your plans for putting it out there so that all mothers can benefit from it.
LB: Yes, this book started long time ago with people telling me write about it, everybody saying write about your experience and I really never got round to do it. It was only after 2018, when we went to Boston and came back. It was after that, seeing her on the podium with Ellen Johnson Sirleaf and other people, and I thought this is how far we have come. And she being who she is, sat there and said, normally when I am talking everybody wants to send a message to my mother, my mother is sitting in the audience now so you can just approach her. So you know she said that at the beginning of her speech and people started turning and looking. So I told myself, wow, this is how far we have come, I must have done something right. So a friend of mine, we were sitting at their dining table and talking and her husband said Lydia you have to document this thing (your experience). I said I know but it is just that I start and then I just stop, so it was that period onwards that I thought that okay, and because I realized, I am even beginning to forget some of them. Then I started writing it, the main aim was to help other mothers, believe me I read a lot of pediatric big books when she was born because I was spending like 12 hours at the hospital, anyway, so every aspect of it, I was reading. There was no internet and there was no support, I mean you are shunned in a way. When we first came back, I went to Social Welfare and because I know how to improvise in doing various things using very little, I told them this is my situation and this is what I do, do you have any mothers or whatever and they said ‘yes’. They took me to Palladium, around the Methodist Church, next to it was a small Social Welfare building where they have been coming, I went there a few times but nobody came. Rather they sent a man from Denmark with a Tanzanian wife , who brought a son with cerebral palsy to my home at Lartebiokorshie to help the child. He was ready and able, so I told him what to do, get a booster chair and he didn’t know what it was so I had to get a carpenter to buy wood, foam and leather to do it for the child. So, I am still willing to help if anyone needs my help. There are a couple of people who are still calling me and telling me, like a woman called and said because she has to find money to look after herself and the child, she locks the boy in the house and goes to sell and comes back in the evening. I asked her what are you doing with the child? And she said by the time she comes she is tired, and I said you can never be that tired, you still have to feed him and bath him, so spend another 15 minutes doing some of the things I have taught you. So, she calls me to thank me and tell me that it is bearing fruit and she will try and do more, and that really gladdens my heart when I see somebody putting in the effort because most of them think that it will come to them but they will not go for it. And I tell them, that is not it. I hope with this book it will be widely read and people will know what it entails. You may not necessarily have a child with cerebral palsy but you may be able to assist somebody, because it is basic knowledge. And it is not like you have to travel or something, if you look around you can improvise and help.
Let’s face it, knowledge is power, and we can’t advocate effectively if we don’t have the data to back it. But right now, we are trying to get attention from the government but the government is not minding us because they don’t know how many we are. They did the census and they were supposed to record people with disability, and they didn’t ask my mum whether there are people living with a disability here, so obviously I wasn’t added to the people with disability.– Ms Farida Bedwei
ED: Listening to your story from the beginning of the interview, and this book you are writing to help other mothers, where did you draw your support from? Farida drew all her support from you and friends in school, where did you draw your support from?
LB: I drew my support mainly from God, initially it was my mother but my mother died when she (Farida) was 7 years. So when my mother died my life was shattered and didn’t have anybody at all. Because it was like my mother was there, no matter where I was in the world she will call and asked me to send her picture and say I am going to pray here, so my mother was always there. But from the beginning I knew my mother will not be always there, so poor Ayesha I was training her to look out for her sister. From age 3 or so, I was training her to look out for her sister. After a while, I saw a child psychologist and I told the woman about what I have been doing and I said please find out whether I have damaged her (Ayesha) or whatever. I realized at that age I was putting too much responsibility on her, but fortunately I didn’t damage her.
ED: Thank you to you both.
Thank you for listening to the Chronic Care Matters podcast. For more insights on Chronic Conditions and Care in African Contexts, please visit our website www.chronicitycareafrica.com and follow us on Instagram, LinkedIn and Twitter [at] Chronicity Care Africa. See you next time.
Ama de-Graft Aikins and Ernestina Dankyi produced and edited the text of this interview. Ama de-Graft Aikins and Jemima Okai edited audio and adapted text for the web.