Being your brother and sister’s keeper: Preventing HIV and AIDS for people with disabilities

HealthSocial issues

Notes to broadcasters

HIV and AIDS is a growing problem among people with disabilities. Research indicates that people with disabilities are at equal or greater risk of HIV infection than non-disabled people. People with disabilities are highly vulnerable to sexual violence, and lack access to information, prevention, or treatment and care. Women, adolescents living with disabilities, rural people, women in institutions, and those living in poor urban areas are also at a greater risk of contracting HIV.

Because of the absence of good policies and programs, most people living with disabilities are unaware of how to care for and protect themselves. Many also lack self-esteem, and feel they have no hope of getting married. Consequently, they do not see the need to be tested for HIV or get information about it. Many people living with disabilities are desperate and feel they don’t have a choice when it comes to sex, believing that they must take advantage of any opportunity for it, rather than feeling confident to make good choices. There is also a need to sensitize the broader community about disabilities, as most African countries have poor understanding of disabilities.

Individuals with disabilities face three major human rights abuses that increase their risk of becoming infected with HIV:

  1. Higher risk of violence and lack of legal protection. People with disabilities are more vulnerable to violence because many lack the ability to defend themselves. With little access to police or legal counsel in some countries, they don’t know where to turn if they are victimized. They also have less access to medical care or servicessuch as psychosocial counseling.
  2. Lack of education. Children who have disabilities are often shut out of education, including education about sexual health. The World Bank estimates that as many as 97% of individuals across the world with disabilities, and 99% of women with disabilities, are illiterate. Without education on sexual health, an individual won’t know how HIV is contracted or what to do if they have been infected.
  3. Lack of sexual health information. In general, it is assumed that people with disabilities are not sexually active. In fact, they are just as likely to be sexually active as people without disabilities. But they are less likely to have access to information about HIV prevention or access to preventative methods like condoms.

Poor people are more likely to become disabled because of poor nutrition, poor access to medical care, dangerous housing, and injuries on the job.

The HIV virus can have disabling effects on previously non-disabled individuals and cause significant developmental delays. Individuals who have a disability and whobecome HIV-positive are doubly stigmatized, which reinforces their poverty.

It is important when moving towards an HIV-free world to include those with disabilities, as they are often overlooked.

This script highlights the role of the broader community and of educational institutions in helping people living with disabilities to access information on HIV and AIDS and protect each other from abuse. It also encourages people with disabilities to take part fully in the fight against HIV.

You might choose to present this script as part of a regular health or rural program, using voice actors to represent the speakers. If so, please inform the audience that the actors are representing real people who were interviewed for the script.

You could also use this script as research material or as inspiration for creating your own program on this or similar issues in your own area. In your research, you could interview activists, people with disabilities, government officials who deal with issues of HIV and AIDS, and also people living in institutions.

You might consider researching and broadcasting a series of programs on this topic. Other related topics might include:

  • what the law says about people with disabilities and HIV and AIDS,
  • preventive and security measures for people with disabilities on abuse and HIV, and
  • how people with disabilities can fight HIV within their support groups.

Estimated running time: 20 minutes, with intro and outro music

Script

Host:
Hello, my name is Dominic Mutua Maweu. I’m a freelance journalist at www.ruralvoicesafrica.info, and a community worker from Kenya.

Welcome to the program. Today, we will talk about HIV and AIDS in people living with disabilities. People with disabilities are among those groups of people most at risk of getting this virus. But they have been ignored for a very long time in the fight against HIV and AIDS. This has led people with disabilities to neglect themselves and stop paying attention to anything about HIV.

The program is about being your brother and sister’s keeper in the fight against HIV. I will be interviewing three guests, who will highlight key issues which affect people with disabilities in the fight against HIV and AIDS.I believe that, bythe end the program, you’ll understand what we mean by being your brother and sister’s keeper. In other words, how to be responsible for your brother or sister’s well-being.

With me now is our first guest, who has been trained how to handle people with special needs, and is the head teacher of a primary school which teaches children living with different kinds of disabilities. He will tell us how being our brother and sister’s keeper can help in the fight against HIV and AIDS in people living with disabilities. Welcome. Please introduce yourself.

Reuben Mbwiko:
My name is Reuben Mbwiko, and I’m the head teacher at Mitwasyano Primary School in Mtito Andei Division, in eastern Kenya.

HOST:
Welcome once again. I understand that Mwitasyano is a school dedicated to learners with special needs. Can you start by telling us what your role is at the school, and the different types of disabilities that the school addresses?

Reuben Mbwiko:
In general, there are five main technical terms given to the types of disabilities we have: that is, physical, mental, visual, hearing, and multiple impairments. Multiple impairment is when someone has more than one disability. In my school, we have people with all five types of disabilities.

Host:
Do you work on HIV and AIDS awareness in your school?

Reuben Mbwiko:
Yes, we have awareness and counselling sessions on HIV and AIDS.

Host:
Do you have a special program on HIV and AIDSfor people with disabilities?

Reuben Mbwiko:
No, we usually handle them together to avoid stigmatizing people with disabilities. But for those with disabilities who need to be handled individually, we handle them separately or use special methods to help them understand. But this applies to all lessons, not just HIV and AIDS.

Host:
How do you make sure that students with disabilities are safe from people who might take advantage of their disability, especially when they are coming to school and going back home?

Reuben Mbwiko:
Well, we have developed a spirit of “being your brother and sister’s keeper” in our school. This helps even those without disabilities. The students all go home as a team—sometimes the physically challenged are carried by their friends on their backs! This has also helped increase harmony in school; they play together and do everything together as brothers and sisters.

We have also been talking to parents about the security of those children with challenges. We advise them to be careful about the people who are around their children, and at the same time to report any disabled child who is not going to school to the authorities. Sometimes disabled children develop low self-esteem, leading to not caring when they are abused—and failing to report it. It’s only in school that people with disabilities can learn about their value to the community.

Host:
What is your message to the community and those living with disabilities about HIV and AIDS?

Reuben Mbwiko:
Each one of us is disabled in his or her own way; none of us is perfect. We need each other in different ways and should be ready to assist each other with our difficulties in life. My message to the policy-makers and activists is that we need good policies on HIV and AIDS for people living with disabilities. To make good policies, we also need good data on HIV and AIDS in people living with disabilities.

Host:
People living with disabilities are the most at-risk group of HIV-positive people because of the way the community relates with them. Let’s hear from our next guest, who will be talking about her life as a disabled person, and a leader for people living with disabilities.

Ms. Joyce Mawiyoo is a single mother who is 55 years old and lives with a disability. Joyce was not born disabled, but had an accident when she was ten years old and injured both legs. She is now the chairperson of people living with disabilities in Kibwezi East sub-county. Here is our conversation.

Host:
Joyce, as a leader in this region, can you tell us whether there are any programs which inform people with disabilities about HIV and AIDS?

Joyce Mawiyoo:
We don’t have such programs. People with disabilities have been ignored in many things, including the fight against HIV. Very few people want to be associated with us, and in most cases we fail to get important information about life.

Host:
Do you think people with disabilities need to be told about HIV and AIDS?

Joyce Mawiyoo:
People with disabilities are the group at most risk of getting the virus, so they need all information about HIV. In spite of the fact that we have some kind of disability, we are human beings with feelings and a right to reproduction.

Most people with disabilities are desperate because no one wants to be associated with us. Most people who visit us or date us for sex come at night when they will not be seen. This situation leaves us with no option other than to take advantage of this opportunity. Women are the ones at most risk. That’s why you will see a disabled lady pregnant, but you will never know her lover.

Host:
What do you discuss when you meet with your groups of disabled people?

Joyce Mawiyoo:
We discuss issues of general life: how to get supportive materials like wheelchairs, crutches, etc. We also discuss income-generating activities to avoid being a burden to people close to us, who in most cases see us as a curse to the community.

Host:
As a leader who understands these things, do you take time to tell them about HIV and AIDS in your groups?

Joyce Mawiyoo:
Most of these people are desperate and not aware. When you try to talk with them about such things, they pretend they don’t need to know about it because no one is interested in them. But we are trying to make them understand.

Host:
What is your final message?

Joyce Mawiyoo:
I call on the government to create programs which inform people with disabilities all about HIV and AIDS, and prepare information materials that can be used by people with visual disabilities. To my fellow friends living with disabilities, let’s love ourselves and stop pretending—we have all the rights to enjoy life to the fullest!

HOST:
Before we conclude, let’s hear from a disabled girl who has just finished her secondary school education. Although she has benefitted from going to school, she is reluctant to get into a relationship with a boy simply because she believes that no one would want to be associated with a person with a disability. With me is Betty Nzuki, who is twenty years old and lives with a disability. Betty is in a wheelchair and is with her younger sister. Let’s listen.

Betty NZUKI:
My name is Betty and this is my young sister; she is always with me.

Host:
Do you go to school?

Betty NZUKI:
I completed my secondary school education last year, and for now my parents are working on how I can join college.

Host:
What about your sister? Does she go to school or is she also waiting to join college?

Betty NZUKI:
She is in form two, but now they are on vacation.

Host:
But you told me she is always with you. What happens when she is at school?

Betty NZUKI:
(LAUGHING) Well, we are always together when she is not at school. She even used to take me to school first, then go to hers, which was just close by.

Host:
Ok, please tell me about your life in school. Were you being treated as a special person living with a disability?

Betty NZUKI:
No, but everyone in that school loved me and was ready to assist me wherever I needed it. After my sister left to her school, the rest was up to my friends, who usually waited for me at the school gate.

Host:
Were you told about HIV and AIDS at school?

Betty NZUKI:
Yes, there were sessions on that, and sometimes counsellors from those organizations dealing with HIV campaigns used to come and educate us.

Host:
Were there special sessions on HIV and AIDS for people living with disabilities?

Betty NZUKI:
No. What for? I don’t think there is any need, because the HIV and AIDS epidemic is the same for all. Only when it comes to rape, we were told to be more conscious of the people around us. We were also cautioned about choosing friends who can be good brother or sister’s keepers.

Host:
Ok. Can you tell me about your parents? Do they give you any advice about HIV and AIDS?

Betty NZUKI:
No, but they are always very conscious about my protection. I am always left with someone who can protect me against any abuse.

Host:
From the three guests, it’s clear thatthe fight against HIV and AIDS will not be complete unless we include each and everyone in the community. We have learned from them that people with disabilities also take part in all the activities that lead to the spread of the virus.

So governments, human rights organizations, organizations of people with disabilities, and the general community need to work together to create better results in the fight against HIV and AIDS.

Parents of people with disabilities should help them to understand that they are human beings with all the rights to enjoy life, instead of simply protecting them.

Finally, it’s your responsibility as a disabled person to know that it’s your health, and every move toward improving your situation starts with you. You can also be your brothers’ and sisters’ keeper by having an HIV test. Even those who come to you secretly need to be protected from HIV.

Our program ends there for today. I am happy we learned together. Bye until next time.

Acknowledgements

Contributed by: Dominic Mutua Maweu, freelance journalist at www.ruralvoicesafrica.info
Reviewed by:Gail White, Health Promotion Consultant, Cape Town, South Africa.

Information sources

Sources of information

Interviews:

Reuben Mbwiko, Head Teacher, Mwitasyano Primary School, December 6, 2015

Joyce Mawiyoo, chairperson for people with disabilities in Kibwezi East Sub County, December 7, 2015.

Betty Nzuki, girl living with a physical disability, December 7, 2015

 

gac-logoProject undertaken with the financial support of the Government of Canada through Global Affairs Canada (GAC)