I have cochlear implants because of where I am from

July 22nd, 2016 by | Tags: , , | 1 Comment »

I live in a country where receiving a cochlear implant is not any option for anyone except for a very small number of people. There is not one hospital in Cameroon that offers cochlear implants. Cochlear implants are not even known by most healthcare workers. When I gave a training to healthcare workers at the largest hospital in my region on how to work with persons with disabilities in HIV services and my counterpart, Ruth, shared with them that I am deaf but hear with cochlear implants, they were astonished to learn that there is even an option to help deaf people hear. Their reaction was evident on the post-tests that I administered. On the post-test, one of the questions was, “What is the most important information you learned today?” One-third of them responded the question by saying that there is a device that allows deaf people to hear.

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When people ask me what has been my biggest challenge while serving in the Peace Corps, I tell them that it’s when I have to acknowledge that I have been granted far more privileges as a persons with disability simply because of where I am from and which family I was born into. I have felt helpless and have often wished that I could do anything to give persons with disabilities the same quality of life I have been afforded to live.

I have been fortunate to grow up being able to learn to speak and hear with cochlear implants simply because I just so happen to come out of the womb of a mother who happens to be living in a country that has the resources to aid persons with disabilities. Moreover, I happen to be born to parents who are highly educated and had the ability to research and seek information. One has already acquired an MD and the other a Masters by the time I was born.

I also happen to be born to a family that had the financial means to offer support. Even though my father was still in school, receiving additional medical training to be a doctor and studying for PhD, and my mother was working part-time, all four of my grandparents who happen to be still living today assisted by providing financial support. The money was used to pay for gasoline to commute to hospitals and therapy centers, airplane and train tickets to travel out of town to acquire resources that did not exist in my hometown, doctor and therapy appointments that were not covered by health insurance, toys, books and other learning tools to teach me to hear and speak. My grandparents who also have university degrees also assisted my parents in acquiring information about my deafness. If it weren’t for my grandparents’ support, my mother wouldn’t have been able to afford to work part-time and have time to take me to doctors’ appointments and therapy sessions. My parents were also able to afford to spend many hours communicating with me to help me learn as many new words. My mom was eventually able to quit her job when my dad became fully employed to devote full-time to working with me and also my sister who was born deaf too while we were growing up.

My family and I did work hard together to get to where I am today by devoting several hours to traveling to hospitals for cochlear implant surgeries and audiology appointments and therapy centers for therapy sessions, doing therapy work at home, and reading books together. While I worked hard in school and made sure I succeeded in getting the best grades, it wouldn’t have been possible without my parents’ assistance as they were able to sit with me at night when I needed their help with homework and needed to ask them questions. If I didn’t understand what I was reading, they were able to guide me and teach me how to understand better.

While one can say my family did make sacrifices because if my sister and I were not born with disability, my parents could probably have been able to go on more vacations and buy nicer clothes and furniture. However, for almost all people in Cameroon and even for many people in the US, not limited to those with family members with disabilities, they cannot even afford vacations and materials at all, no matter how many hours and how hard they work. So many even struggle to put food on the table for themselves and their children.

Thus, if a mother gives birth to a child who is born deaf in Cameroon and wants to do anything she can to offer her child opportunities and live without limitations, it may not be possible. Ordinary parents in Cameroon do not have any kind of health insurance. They have to foot the entire bill for doctors’ visits. Many families have to sell livestock in order to pay for medical bills, even if it’s for a simple visit to diagnose malaria. Parents work several hours, about 9 hours a day, six days a week, and earn very minimal money. Then when they go home, they have to cook dinner and do laundry. Keep in mind that in Cameroon, most homes do not have microwaves, ovens, washer and dryers. They wash clothes by hands, which is a very laborious and difficult work. They cook food from scratch although they do have the option of buying prepared food on the street. Those who do not have indoor plumbing which is very common in this country have to fetch water outside. If the distance to the nearest water source is far, getting water can take at least a couple hours.

Because of the environmental circumstances that are beyond the control of parents, no matter how hard the parents work, they just may never be able to get their deaf child the necessary tools and support. It is not only because there is no hospital offering cochlear implants and most hospitals do not even have hearing aids, it is also because they just simply cannot get the money and time they need, no matter how hard they try to find them. Even though sign language is an option, it’s still inaccessible because parents cannot afford to take time off from work or pay someone to clean their clothes and house to have time to learn sign language. It’s important to note that there are free sign language classes.

Moreover, because so many families are not highly educated, they are not well aware of how to watch their children’s milestones and how to research. This means that they do not know that if a child doesn’t startle to loud noises or if a child doesn’t start speaking by age two, they need to be worried about the possibility of their child being deaf and consult a doctor. They often allow the problem to persist until when the child is starting school. Even if the parents do notice the possibility of their child not hearing when the child is very young, they may hold off taking the child to the doctor because they have no money. Or, even if they do have the money to take the child to the doctor and take the child to the doctor, they may still not receive all information such as schools for the deaf and how to access resources for learning sign language. Or, even if they do receive resources, they may choose not to send their child to school for the deaf at all because of a myth that persons with disabilities are worthless and paying for their education is not a worthwhile because they can’t contribute to the society.  Or, even if they do have the money to take the child to the doctor and have received all information, they may still wait a few years to send the child to a school for the deaf and never learn sign language because they do not have any additional funds to afford the school and to take time off from work to learn sign language.  Almost all schools in Cameroon are not free.

As a result, in Cameroon, it is very common to see deaf children not starting to learn sign language until when they are five years old, six years old, seven years old or even eight years old because parents just didn’t know they were deaf until these ages and/or didn’t know that schools for the deaf existed or didn’t have the financial means to send the child to a school for the deaf as soon as the deafness was diagnosed. This means that they have lost so many years of language development simply because they happen to be born out of the womb of a mother who happens to be living in a country that has little to no resources to aid persons with disabilities.

I did look into seeing if I could help bring cochlear implants to Cameroon so that at least those very small number of deaf children and late deafened adults who come from upper middle class and wealthy families can still have the option of receiving a cochlear implant. However, for now, bringing cochlear implants to Cameroon is not even an option at all.  While there is a surgeon who has the qualifications to learn how to do cochlear implantation, there is absolutely no resources for follow up care. Cochlear implant is not like most technologies like computers and smartphones that can work like a charm when turning on for the very first time. In order for cochlear implants to work properly, people who acquire a cochlear implant need to do rehabilitation and have regular hearing tune ups. To help people understand what this means, I like to tell them that it’s similar to when people such as soldiers lose limbs, they have to attend rehabilitation to learn how to use prosthetic devices.

While some people in Cameroon did claim to me that there are people who can do follow up care which includes rehabilitation and audiology, I visited one hospital that has the qualified surgeon and talked with a speech language pathologist who also happens to come from the US and is living and working as a volunteer for a few years through a non-profit organization. After assessing carefully, I have learned and concluded that there is absolutely no one in Cameroon who is qualified to learn how to do MAPping, a term that means tuning up one’s cochlear implant. There is no program in universities in Cameroon that even teach general audiology. There are only two speech language pathologists in the entire country of Cameroon. One of them is the one who is from the US and whom I met. I was told that the other is based in Douala, the largest city in the country. Again, there is not even a program in universities in Cameroon that teach speech language pathology. This means that they have absolutely no one in the longterm who can do follow up care. This also means that there is not even anyone to evaluate whether or not the person is qualified for cochlear implants. They do not even have an ABR, a machine that can accurately test the degrees of one’s hearing loss.

Because of this situation, today, the only Cameroonians who can get cochlear implants are those who are wealthy and have the financial means to fly out of country several times not only to get the cochlear implant through surgery but also attend audiology appointments for MAPings. I have been told by an ENT in Yaounde that there are very few Cameroonians who do have cochlear implants, and they got them in Europe or Middle East.

Being able to hear with cochlear implants is truly a privilege.  People are able to hear with the technology primarily because of where they are born and which family they are born into.  I do hope this can be changed in the future as I do wish to see a day where deaf people can have the option to hear regardless of their life circumstances.

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1 Comment

Mohamed moustapha

July 23, 2016 at 12:24 am

I m a doctor from mauritania a west african contry poor like cameroon my 7 y old daughter have cochlear implant and she doing well she is in meanstream school.
In Mauritania we have a growing number of CI childs and the things change progressively.

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