July 28th, 2016 by Rachel | Tags: Disability, Health, Peace Corps, Sexual Reproductive Health | No Comments »
Last Sunday, I went with Samuel, one of my work partners, to Kedjom-Keku, a village located about an hour from Bamenda to present Sexual Reproductive Health to 29 persons with disabilities. Most of the participants were older adults who were illiterate. This meant that when conducting the pre- and post-tests, we needed to read each question and choices of answers to each persons with disabilities individually. During the pre-test, Samuel and I together assisted half of the participants with the test while an officer of the disability group assisted the other half.
After conducting the pre-test, I presented information on Sexual Reproductive Health, which included information about family planning, contraception options, and sexual consent and condom demonstration. As evident on the pre-tests and also post-tests and from the conversations with the participants, it was clear that for many of them, it was their first time learning about all different contraception options. Because most did not know grammar English, Samuel took the time to translate what I said after every few sentences. For example, after talking about the benefits of using an injection, Samuel would then translate and then I speak about the problems of using the injection. After I spoke about the problems of using the injection, Samuel then translated.
Then, when the presentation was done, the officers of the group relayed to Samuel who then relayed to me that they would like to talk about group’s business matters and asked if they could do the post-test while talking about the business matters. I said, “No problem.” Because I needed Samuel to assist me in conducting the post-test, I stood and waited for him for several minutes while he took part in participating in discussing the business matters with the group. Then when I went to Samuel and asked him when can we conduct the post-tests, he then said “now.” The next thing I see is several persons with disabilities handing the test to an officer, not the one who assisted in conducting the pre-tests. I immediately went up and said, “Wait! Wait! They need to take the post-tests.” The officer said that he already helped them complete the post-test. I then looked at the post-tests, and it was clear that the participants did not take the tests themselves because everyone marked the exact same answers. I then scolded to the officer, “You cannot take the tests for them. This is fraud. This is corruption! You need to ask each person every question. You need to let them answer the question. The answers must come from their own brain! We need to hand the tests back to them.”
I am not sure how I missed seeing the officer completing the post-test for them. I must have been distracted and didn’t notice. We then handed the tests back to everyone who handed in the tests. Samuel and I then went to each participant individually and asked every question and read every answers. We let them dictate their own response. We went to every single person because even though I asked the officer to go back to each of them and ask every question and let them respond on their own, he still didn’t do his job. So, Samuel and I both went to every single participant to ensure that we get a true and accurate result. This is what Samuel and I both discovered when we went back to almost every individual to complete the post-test:
The first question was “Family planning affects the health of children.” The answer choices were “True” and “False.” The correct answer is “True.” The officer answered “False” for every participant for whom he took the test. Meanwhile, when Samuel and I both went back to most of them, they all answered “True.”
Then one of the following question was “Circle all contraception options” and the answers included condom, birth control pill, injection, implants, IUD, exclusive breastfeeding for six months, and abstinence. The officer circled “condom” and “abstinence” for every participant for whom he took the test. When Samuel and I went back to most of them, they all said to circle all or most of them.
Then one of the following question was “Have you been forced to have sex?” The officer circled “no” for all of them. Meanwhile, when we went back to all women, some of them said, “yes.”
Then for the last questions, “Do you have access to contraception?” and “Do you use any contraception? If yes, circle which one.” the officer circled “Yes” as if they do have access to conception and circled “Condom” and “Abstinence” for every participant. Meanwhile, when Samuel and I went back to most of them, almost all of them said they do not have access to any contraception options and do not use any.
Samuel and I had a very good discussion after the workshop about the situation of testing the participants. I do not know what the officer’s intention was but if his intention was to make his group look good by trying to give all of them 100%, that did not happen because he answered some of the questions incorrectly for all of them. I explained to Samuel that even if they don’t all get 100% on the post-test, it’s always important to get true and accurate results so that we can see what information they still do not understand so that we can know what we still need to work in helping them improve their knowledge of health. Even for the questions that were personal and had no right or wrong answer, it was still important to get accurate responses so that we can have a clear understanding of what challenges they are facing so that we can see how we can improve their situation.
After evaluating the tests, the results show that while everyone did poorly on the pre-test, 14 out of 29 scored 100% and additional 6 scored almost all correct, 88% or above. Then additional 3 scored 72%. If we had taken the results from the post-test that included the answers selected by the officer who was answering the questions for many of them from his own brain, we would have had many scoring 75%. Meanwhile, most participants did better than the officer as they scored 100%!
July 27th, 2016 by Rachel | Tags: Disability, Peace Corps, Persons with Disabilities of Cameroon, Photography | No Comments »
During the last seven months of my Peace Corps service, I am featuring photographs and stories of several persons with disabilities living in Cameroon. All the photos are part of a series called “Persons with Disabilities of Cameroon.” The goal of presenting photographs and their stories is to create better awareness about the plights that persons with disabilities face in a developing country. When I return to the US, I hope to exhibit this series in a gallery and publish a book to educate others about persons with disabilities living in developing countries as this topic is so rarely discussed in the media.
Therese is a young, quiet woman in her 30’s who is unable to walk, has bowl movement issues, has never been to school and nver home. When I spoke to her, she was very shy and spoke very softly. She lives with two of her sisters and her parents. One of her sisters shared Therese’s story with me.
“When she was born, she had something on the lower end of her back and water was coming out of it. She spent one month at Bamenda Regional Hospital. And then they transferred her to a polyclinic in Upstation. From there they transferred her to Yaounde. She spent nine months in Yaounde. They operated her in Yaounde. After that they gave her quinimax injections. Her head was big and she could not stand. She returned to Bamenda. She was crawling since she cannot stand. Her feet turned outwards from crawling. She cannot control her stool,” said elder sister Esther.
As Esther was sharing her story, I was thinking in my head, “This condition sounds like it’s spina bifida.” I asked them if they’re familiar with “spina bifida” and they said “no” and have never heard of the term. I explained to them that it’s a condition where a person is born with lesion on the lower back, which is caused by the spine not closing completely during the pregnancy of the mother. This results in some growing up unable to walk and having bowl movement issues.
Therese visited a nearby rehabilitation center when she was a child and tried leg braces. “They did not work and she doesn’t use it,” said Esther.
Esther who has been taking care of Therese all her life said that she needs adult diapers but cannot afford them even though they are available for purchase in Bamenda. She said that if she could have adult diapers, she could leave the house. She stays in home all day and never leaves the house. She hasn’t been outside at all. “She doesn’t know any places around here. She had only heard the names,” Ruth, my work partner who introduced me to Therese and accompanied me to her home. Esther added that she is too shy and she doesn’t want people to see her.
She has never been to school all her life. “She cannot write,” said Esther. When I asked Esther why she has never been to school, she said it’s because of her bowl system, and they were unable to find transportation to take her to school. All her other seven sisters completed secondary school.
When I asked Therese what she does everyday, Esther responded saying that she arranges eru for the aunts to sell everyday. She cracks eru, an African wild vegetable, to sell. She washes her family and her dresses. She helps arranges the house by putting things such as shoes and clothes in order. Esther added, “She can dry clean and do house chores by crawling.”
I asked Esther what challenges she faces in helping Therese and she said, “I carry water for her when she wants to wash her dresses. When she poops, we carry it out. When she wants nice things like food, we go out and buy it for her. We always advise her. She is always angry.”
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.
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.
Regina Awafe, a sign language interpreter and superstar advocate for the deaf who runs an organization called Agnes Association for the Empowerment of the Deaf and Vulnerable Persons, brought 31 young deaf adults together at a church to attend the HIV Prevention workshop. It was the largest HIV Prevention workshop I have hosted so far. All participants communicate in sign language. Regina interpreted my presentation while I spoke. It was an incredibly interactive workshop because the participants were very engaged and asked very interesting questions such as “How can parents still have a child if one of them is HIV positive?” “If a woman had sex with more than one man and became pregnant, how can she find out who is the father of the baby?” “There is a woman who I like but she is HIV+. Can I still be in a relationship with her?”
Most participants were not literate due to having no ability to hear which resulted in no exposure to language until they learned sign language. For those who were born deaf or became deaf as a small child, many did not learn sign language until they were between five and eight years old. For those who became deaf later in life, many have had to drop out of school due to inability to hear. As a result, they faced severe language delay and low competency in language. Therefore, administering the pre- and post-tests were incredibly difficult because most could not read. Regina did her best to help them translate the words to sign language but the results still show that most could not grasp the language on the tests. I cannot provide the results because it does not give a real picture of their knowledge. The most important thing is that they were truly attentive and interested by asking several questions.
Traveling to Bafut to teach HIV Prevention and Sexual Reproductive Health
When Ruth and I traveled to Bafut, a village near Bamenda, as mentioned in the previous blog post, we also presented HIV Prevention to the disability group. Eleven participants were in attendance. The pre-test results demonstrated that everyone except for one has been educated on HIV as six participants answered all questions correctly and others answered one or a few questions incorrectly. One participant scored 33% on the pre-test but then scored 100% on the post-test. On the post-test, everyone except for one scored 100%. One scored 89%, which means that the participant answered only one question incorrectly.
July 18th, 2016 by Rachel | Tags: Disability, Health, Peace Corps, Sexual Reproductive Health | No Comments »
In the past few years in the United States, a number of Republicans have been fighting to defund Planned Parenthood because they falsely believe that Planned Parenthood only provide abortion and therefore, they see that by defunding Planned Parenthood, they help end abortion. However, according to the Planned Parenthood’s budget, only 3% of the budget goes to abortion. The rest of the budget goes to providing care for the sexual reproductive health of women such as breast cancer screening, family planning, treating sexually transmitted diseases and contraceptions.
Meanwhile, in Cameroon, many Peace Corps Volunteers including myself, who are paid by taxpayers from the US, are teaching Cameroonians about sexual reproductive health. The goal of teaching them sexual reproductive health is to increase the number of people being willing to talk more knowledgeably about sexual reproductive health, sexual consent, and family planning in their groups, families and communities and being more knowledgeable about their own sexual reproductive health, preventing unwanted pregnancies and communicating about sexual consent. We teach them about different contraception options, which includes condoms, birth control pills, injections, implants, and IUD. We do condom demonstrations where we will have wooden penis models and/or bananas and allow participants practice putting condoms on the models. We do also let them know that abstinence is an option for them too. We help them better understand how having unplanned pregnancies and unwanted children impact them financially. We teach them how to communicate with partners about sexual consent and empower women to have the right to say “no” to sex.
I have conducted three sexual reproductive health workshops so far and plan to conduct more. At my sexual reproductive health workshops, like many other volunteers, I covered family planning, contraception options and sexual consent. I did two hands on demonstrations, which participants have shown strong enthusiasm in learning about sexual reproductive health. I used real bread to demonstrate the importance of family planning by sharing a story of two different families, one family who does family planning and has fewer children and one who does not do family planning and has many children and dividing the pieces of bread based on the number of children each family has. This activity helped participants understand the financial and health impact of children when it comes to family planning. I also used bananas and condoms to do condom demonstrations with them, and they all enjoyed it very much.
The only challenge I have faced is discussing the definition of sexual consent. For example, they state that if they are naked and kissing each other, it automtically means “yes” to sex and explained that it’s the norm in the “African culture.” I explained to them that the situation is similar in the US too, which is that Americans misunderstand the meaning of sexual consent too. I explained that the question is not whether or not it is part of our culture but the question is “Is this a human rights issue?” While I have made clarifications, Ruth has been a wonderful leader by clarifying too to them as a Cameroonian that both men and women do have the right to say “No” to sex at anytime even when they are naked and kissing and that it is always best to make a verbal agreement, which is that both spouses need to verbally say “Yes” before proceeding to sexual intercourse.
I have been administering pre- and post-tests to evaluate whether or not they have learned from the workshops.
At the first workshop, which was conducted with the disability group, Helping Each Other, in the town center of Bamenda, only four members attended and so, it was hard to formulate the results. Three of the members did poorly on the pre-test but did poorly again on the post-test. I think it’s largely due to their level of literacy. One member did well on both the pre- and post-test, scoring above 80%, and he finished secondary education which explains why he performed well on the test.
I conducted the second workshop with the group of women with disabilities. All participants were women, both with and without disability. It was hard to formulate the results because some did worse on the post-test than they did on the pre-test and so, I wonder if they accidentally answered the questions on the post-test before the workshop thinking it was the pre-test and then answered the pre-test questions as the post-test questions. The pre-test questions are on one side of the page and the post-test questions are on the other side of the page. Their level of literacy could also be one of the reasons as they might have just circled the answers randomly rather than taking the time to read them thoroughly and think about the questions. On the post-test, five out of nine scored at least 75% or better. On the post-test, I asked if they have been forced to have sex or not and four circled that they have been forced to have sex, which verifies that women with disabilities do face the situation of being forced to have sex. Six out of nine women answered on the post-test that they do use contraceptions which includes condom, IUD, and abstinence. Because only women took the tests, it was interesting to see that only six out of ten circled “I agree” on both the pre and post-test to the question “Men are responsible for helping women avoid pregnancy.”
Ruth and I then traveled to Bafut, a village near Bamenda and presented to 11 persons with disabilities. Everyone scored in the 70’s and 80’s percent except for one who scored below 65% on the pre-test. Many made at least 10 points gains on the post-test and scored between 85% and 100% except for one person who scored 82%. Four scored 100%. Seven out of 11 shared on the post-test that they do use contraception methods, which include condom, injection, birth control and abstinence. It was interesting to see that this group answered “I agree” except for one on the pre-test and all answered “I agree” also on the post-test to the question “Men are responsible for helping women avoid pregnancy.”