Because today is 4th of July, United States’ Independence Day, I decided to observe it in Cameroon by celebrating Peace Corps’ second goal which is to teach the host country nationals about the American culture. I invited my Cameroonian work partners and also a Peace Corps staff member who lives in Bamenda to my home to teach them about 4th of July. I made homemade cheeseburgers and mac and cheese, the two most popular American dishes that are not eaten regularly by Cameroonians. I also included chips, which are very hard to find in Cameroon as they are also not part of the Cameroonian culture. Because cheese is not part of the Cameroonian diet, it was the first time for a couple of them to eat cheese. Some said they did not like the Swiss cheese that was part of the hamburger when they first tried it but after a few bites, they enjoyed it more. However, they did love the mac and cheese which means they do really like the cheddar cheese. A couple enjoyed the hamburgers so much that they took a second one home with them to eat later.
As I didn’t want to teach the Cameroonians only about food, I shared facts with them about the United States. I created a poster with a list of facts about the US, and we had an interesting discussion. They were all very shocked to learn that there were only 2.5 million people when the US first became independent in 1776 and that Alaska was purchased from Russia.
The other day, I wrote an article about the issues persons with disability face relating to HIV/AIDS in Cameroon.. Today, I am writing about potential solutions for solving HIV/AIDS issues in the disability community. I learned about these suggested ideas for working with HIV/AIDS issues in the disability community at the HIV/AIDS training in Ngaoundere, which I attended last May.
The first and foremost solution for persons with disability who are already living with HIV/AIDS is to build dialogues between the disability and HIV networks. This means that there is a need for communication between persons with disability and healthcare workers to understand better how quality of services can be improved. This can be done through setting up a support group for persons with disability living with HIV/AIDS. When a support group is set up, persons with disability living with HIV/AIDS can meet together at a designated accessible place and an assigned health care worker would be present at every meeting to provide services including counseling and treatments. The purpose of having persons with disability living with HIV/AIDS meeting together is to also have a safe space to discuss their challenges and fears and to share ideas on how to live their life with HIV/AIDS. It would also provide the health care worker an opportunity to listen to their experiences so that the health care worker can become better aware of the issues they face and learn how to provide better services. The health care worker who leads the support group can also become an educator in educating other health care workers on how to include persons with disability at their clinics. The support group should also offer micro-loans so that persons with disability living with HIV/AIDS can start a business and earn their own money to afford treatments for themselves, also food so that they can eat a good diet, and pay for transportation to the clinic and other places.
The next solution which applies to both, persons with disability living with HIV/AIDS and persons with disability living without HIV/AIDS, is to provide accessible education to all persons with disability. This means when workshops are offered in schools and clinics, accommodations such as braille, audio recordings, sign language interpreters, and transcripts need to be provided to persons with disability to ensure inclusion. If it’s just a health care worker providing the education one on one in a doctor’s office, accommodations still need to be provided. The physical structure of the building also needs to be accessible so that those with mobility disability can freely enter in the workshop. The education needs to include information about safe sex, sexual reproductive health, how the disease is transmitted, and service options.
The last solution is to advocate all organizations that have HIV/AIDS strategic plans to include persons with disability in their plans. This means that they need to be aware that they need to make sure persons with disability are not turned away from services for any reasons.
When most persons with disability in Cameroon are the poorest of the poor, most are unable to not only treat their condition but also acquire devices that would help them lead an easier life and also leave their homes. Even when if they are able to acquire a device, they are often not given the most appropriate device. When they are given the wrong device, many can still face dangers when using the wrong device and/or still lack independence.
One of the most common problems I frequently encountered in Cameroon is that many blind people use a walking stick instead of a white cane. When I visited a blind school in a village, I found that all blind people who had a device had a wooden walking stick. The blind teacher said that while the wooden walking stick did help them navigate, they still faced dangers because people would mistake them for people with mobility disability. So, drivers will sometimes drive by them and nearly hit them as the drivers don’t realize they can’t see to move out of their way.
When people have mobility issues in both the legs and arms are given manual wheelchairs, they still face lack of independence as they have to rely on someone to push their wheelchair everywhere they go. Power wheelchairs are unfortunately almost non-existent in Cameroon. Hilda Bih, a Cameroonian radio journalist based in Bamenda who who has muscular dystrophy, is fortunate to have a power wheelchair because she traveled to the US a year ago for the first time for Mandela Washington Fellowship and had the opportunity to purchase a power wheelchair and bring it back to Cameroon. Before she went to the US, she was using a manual wheelchair and relied on her family members to push her to places. Hilda told me that the power wheelchair has given her so much independence that she can now commute to and from home and work on her own which she couldn’t do before going to the US.
Deaf and hard of hearing often have issues in receiving quality hearing aids when they are able to obtain them. Many of those who do have the fortunate to receive hearing aids often get standard ear molds instead of custom-made ear molds. Using standard ear molds do not allow them to hear to their fullest potential, and they also often get feedback sounds. Some also receive hearing aids that are not powerful enough for them to fully understand speech.
While there is the issue of acquiring correct devices, many persons with disability are actually not aware that devices that would improve their quality of life, do exist. When I asked all 150 persons with disability for my Community Needs Assessment if they are aware that there were services for acquiring devices, half responded that they were not aware. According to another study done by a PhD student, Islay Mactaggart, at London School of Hygiene & Tropical Medicine who recently completed her thesis on people with disability in Northwest, only 24% of persons with disability in Northwest region were aware that devices exist. This situation certainly does explain one of many reasons why so many persons with disability never leave their homes.
Many healthcare workers and ordinary people in Cameroon often falsely assume that persons with disability are not sexually active and have immunity to HIV/AIDS. Many healthcare workers also believe that women with disability cannot get pregnant. As healthcare workers also have stigma towards them, persons with disability are often placed last on the list of those who should have the priority to receive care for HIV/AIDS. Parents of children with disability often refuse to acknowledge that their children with disability could be sexually active. There is a fear that if information about sexual health are shared with those with developmental disability, they will become more vulnerable to HIV/AIDS. Some people living with HIV/AIDS believe that if they have sex with a persons with physical or mental disability, they could become HIV/AIDS-free. Women with disability face sexual threats, rape and the issue of convincing men to use condoms. Healthcare centers that provide HIV/AIDS service and counseling are often inaccessible to persons with disability due to physical structures of the buildings.
Because of the false notion that persons with disability are immune to HIV/AIDS, they are often left out of HIV/AIDS education and services including counseling and testing, which they very badly need. Persons with disability are as equally prone to HIV/AIDS as persons without disability. They are also just as sexually active as persons without disability according to a few reports.
They are left out of education also because majority of them are illiterate due to limited education background. Only 2% of all persons with disability in Cameroon have received formal education. Moreover, the presentations at HIV/AIDS workshops are usually inaccessible to deaf and hard of hearing people and visually impaired. There are often no interpreters, transcripts, or any kind of visual aids, the accommodations that are needed to be part of presentations in order to allow deaf and hard of hearing people to be included in presentations. It’s important to note that deaf and hard of people can also be left out of listening to one of the most used mediums for education, radio, on HIV/AIDS. Verbal descriptions of visual aids and audio recordings or braille version of handouts, the accommodations needed for visually impaired people, are often non-existence. Then those with mobility disability struggle to attend the workshops because they need transportation which they often cannot get due to taxi and moto bike drivers unwilling to transport persons with disability because of the time they take to get in and out of the vehicle and the need to have an assistance. We also need to keep in mind that 95% of persons with disability are the poorest of the poor and therefore, many may not have the financial means to attend the workshop.
So, when persons with disability are left out of HIV/AIDS education, they are in greater risk of getting HIV/AIDS. When they are not educated, they have no knowledge about how the disease is transmitted, their own sexual reproductive health, having safe sex, and service and treatment options. When they are turned away from services, in particularly testing, the healthcare workers are potentially increasing the rate of HIV/AIDS as persons with disability who are unknowingly living with HIV/AIDS could transmit the disease to others. Moreover, HIV/AIDS create a tremendous negative impact on the financial status of persons with disability. Because they already face the difficulty of finding and holding a job due to their disability, living with HIV/AIDS can cause them to face greater challenges in having the ability to work due to not feeling well when not having an appropriate treatment or facing double stigma.
A lot of work will need to be done to educate persons with disability about HIV/AIDS and also healthcare workers in Cameroon about giving the persons with disability the most deserving attention in HIV/AIDS issue. I will write a follow-up post on what can be done to solve the issue of persons with disability being left out of HIV/AIDS services.
Information was acquired from the two following reports:
“Understanding and Addressing HIV and Disability-Related Stigma” by Chipo Chilya, Mutale Chonta, Sue Clay, Jill Hanass-Hancock, Stephanie Nixon, Phillimom Simwaba, and Patty Solomon.
“HIV issues and people with disabilities: A review and agenda for research” by Nora Ellen Groce, Roul Rohleder, Arne Hening Eide, Malcolm Maclachlan, Sumaya Mall and Leslie Swartz.
Information was also acquired from the workshop, “Working with and Supporting People Living (PLHIV)” presented by Dorcas Waindim.
My Community Needs Assessment has finally been completed. Here is an infographic showing the results of my Community Needs Assessment. A full written report will be released here very shortly.