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In the Battlefront: From the Community War to the Family War on HIV/AIDS

With Youths of SOY-Worldwide in my Village

After the burial, I sat in my room to listen to soothing churchy tunes. The music; whether the vibrations or the exertion of creation had left an immeasurable physical effect on my body. I suddenly felt strong. Through this serenity my mind traveled to the days I invited my younger brother to live with me in the city of Nairobi. He had dropped out of school when he was left with one year to complete high school. I convinced him to go back to school. He accepted and enrolled for the final year so that he could sit for his examinations while staying with me. His performance was dismal. Hence, he opted for casual jobs at home. Months later, I was informed that he had gotten into drinking illicit local brew. My efforts of talking to him regarding drug and alcohol abuse fell on deaf ears.

Three years later, our mother informed me that he was suffering from boils on both legs and could not walk. He had been on traditional herbal therapy for two weeks without improvement. I suggested that he be hospitalized. I squeezed time from my usual busy schedule and visited him at the hospital. He was delighted to see me. I saw the pleasant boy I use to know since we were children; jolly, nice, loving and tender. We talked at length and he promised never to touch alcohol again. I recall this moment as if it happened yesterday. It was on 23.11.2011. I was just leaving my brother’s bedside when he called me back and whispered in my ears. 'Siste please buy for me shoes; look at how my shoes are torn!’ He bent down and showed me the torn shoes’. Immediately, I saw an opportunity to motivate him to change. I repeated my earlier words 'Bro if you quit drinking and refocus on your life, you will bring a bigger change to yourself’. ‘I will never drink again’. He promised. I told him to wait until 10th of December so I could bring him shoes from Addis Ababa where I was to attend African HIV/AIDS conference known as (ICASA). A friend had mentioned that the quality of the shoes were affordable in Addis Ababa Ethiopia.

I vividly recall 30th November, 2011. I received a call from my sick brother at mid-day 'Siste remember the shoes on 10th December’. Two hours later, our mother informed me that he had passed on. ‘Yes, he was dead!’ I cried bitterly on receiving the news. I had many questions and anger. My brother, hardly 24 years old had died. What we thought were normal boils turned out to be HIV/AIDS complications- Kaposi’s sarcoma!

Everyone is somehow infected or affected by the HIV/AIDS pandemic in Kenya …yet the stigma remains. The Microsoft Word Dictionary defines stigma as the shame or disgrace attached to something regarded as socially unacceptable. Sociologists have taken this a bit further. In a seminal study on stigma in 1963, stigma was defined as an attribute that is seen as deeply discrediting to a person or group (Goffmann, 1963). Stigma has claimed many lives of people infected with HIV/AIDS; however, the stigma can be addressed and eventually be eliminated by: friendlier youth services, educational programs for youth, support groups and a political voice that acknowledges the problem. This is also echoed by UNAIDS when they state: Eliminate stigma and discrimination against people living with and affected by HIV through promotion of laws and policies that ensure the full realization of all human rights and fundamental freedoms (UNAIDS, 2006).

Kenya recorded its first HIV case in 1984, since then the AIDS epidemic has evolved to become one of the central impediments to national health, well being and development. HIV/AIDS in Kenya has deepened poverty, slowed economic growth and has affected women, children and youth to a larger percentage. As of December 2011, 1.6 million people were living with HIV in Kenya, 33% of whom are the youth (NACC, 2012). This number is a clear illustration that the virus has spread beyond discrete groups that affect the whole of society. Many infected people are still stigmatized and discriminated. The late checkups are primarily due to stigma (Murphy, 1995). It often sounds like any other statistics until it is closest to you!

The reality of my brother’s death let me to retrace my experiences around HIV/AIDS. My mind rolled to 2008 during my sister-in-law’s (our spouses are brothers) burial. She had died of AIDS which were highly due to stigma, suffering, shame, and silence. I was given a chance to give my eulogy. For a moment, I was lost with words. However, when I started speaking, I found myself addressing issues of HIV/AIDS and how it is mired with a lot of stigma and silence, including the culture of wife inheritance perpetuating spread of HIV/AIDS and high school dropout rates for both boys and girls. I also talked of how we can come up with strategies of minimizing HIV spreading and stigma and helping the victims seek for medical attention. I saw mixed reactions from the crowd during my speech. I knew it was because they had expected me to add on to the heap of praises that had already been said of the deceased. Others were shocked at such openness on an ‘unspoken topic’. Still, others looked deep in thought. This speech gave birth to Ramula HIV Support Group. This group focuses on enlightening the community on HIV/AIDS thereby eliminating stigma. The group has also assisted the group members establish economic support unit of commercial farming.

I sobbed even more as I reflected on all these. How could my own brother die of HIV/AIDS when I am communicating with the public, researching and training on HIV/AIDS? I thought and reflected on the trainings that I have been conducting on HIV/AIDS in various parts of the country since 2006. I have been carrying out trainings, workshops, conferences and seminars to health workers, community health workers, community members and other members of various HIV support groups on HIV/AIDS. I have been a consultant for Actionaid International, AMREF and Medicine San Frontiers-Belgium on HIV/AIDS, Gender Based Violence and leadership. I am also a member of a global movement on health issues known as People’s Health Movement. Many a times I would carry out programs on emerging issues on HIV//AIDS, including gang rape in the Kenyan local FM stations such as KBC and Waumini FM. I have carried out surveys and I have conducted extensive research on HIV/AIDS.

Also, I have presented some of these researches at local and international forums. All these were done to sensitize community members on HIV/AIDS. Nevertheless, at home I had done nothing…I felt pained! It is human nature that we often think that the problem is out there and bad things can not affect our inner circle. My brother’s death brought the urgency in my heart to give my little contribution on the issue of HIV/AIDS in my village. You see, no one knew of my brother’s HIV status. I thought it was just alcoholism that had made him emaciated. His death shocked our entire family. My dear brother died without disclosing to anyone his HIV status or maybe he wasn’t aware of it. I don’t know. But what is so apparent is stigma was key to my brother’s death!

Coincidentally, my brother was buried on 10th of December 2011. This was the same date that he kept reminding me to buy for him shoes. I bought the clothes he was buried in including the shoes. My brother’s death was the real battle on HIV right in the family! I felt so disturbed and I kept blaming myself that I should have done this or that to avert this situation. Finally, I too decided to wear new shoes and do something instead of blaming myself endlessly. Together with my friend Milcah, we had formed an organization called Supporters of the Youth Worldwide (SOY-Worldwide) in 2006. The purpose of this organization is to empower and support the youth by creating an awareness of their human rights, promote their sexual and reproductive health and rights (SRHR) through educational programmes, HIV/AIDS support programmes and entrepreneurial training. These programs were carried out to the youth of Mathare slum Nairobi and Machakos. In the month of May, 2012 I took a program within SOY-Worldwide to my home village, targeting youth on issues of drug abuse, alcoholism and HIV/AIDS. My brother’s case made me look at the social determinants of HIV/AIDS. I saw a co-relationship between drug abuse and alcoholism and HIV/AIDS among the youth.

According to NACADA (National Campaign against Drugs Abuse) authority Kenya, 75% of Kenyan population is made up of young people below 30 years. The youth currently make up 33% of the Kenyans infected with HIV/AIDS. Young women 15-24 years are three times more likely to be infected with HIV/AIDS than men of the same age. Among students research shows that 75% have tried alcohol at least once. Statistics have also revealed that approximately 2/3 of out-of school youth reported they had ever had sex. Male youth were more likely to have had sex than female youth. Out-of-school youth in rural areas were more likely to have had sex (76%) than their urban counterparts (57%). Condom use among out-of-school youth during the first sexual intercourse was low, especially among males (NACC, 2012). In summary HIV/AIDS among the youth could be attributed to various factors; drug abuse, alcoholism and social behaviour (NACADA). This calls for concerted effort to address the root courses of the spread of HIV/AIDS in the society. When I initiated SOY-Worldwide I was just adding the effort of addressing the issue of drug abuse, alcoholism and HIV in my area.

SOY-Worldwide has made a big change in my village. It is working closely with the youth with the core mandate of drugs and substance abuse prevention, education & communication on HIV/AIDS, rehabilitation and training while contributing to HIV/AIDS risk reduction. Currently SOY is running outreach program for the youth in my village. This program is attracting many youths both boys and girls who are infected by HIV. Many of these youths were dieing in silence without a friendlier service provider to turn to.

The main vision of SOY-Worldwide is to create youth friendly services in addressing youth issues and pave a path for better leadership in the future and making the youth own issues that affect them in the society. Change is inevitable and the young people tend to embrace it better than the older generations. Our society needs young people who are change driven so as to change the status quo that has prevailed for a long time. It’s until we involve the youth who form a larger population in Kenya that meaningful change will be realized. For all these to happen we need sober, focused and healthy youths!

Through my brother’s death I was able to initiate this noble course of assisting the youth in my village. I appreciate that change is gradual. Gradual as it may be, I am doing my part in contributing to attaining zero HIV infection, zero stigma and zero deaths due to HIV/AIDS.

This article is part of a writing assignment for Voices of Our Future a program of World Pulse that provides rigorous digital media and citizen journalism training for grassroots women leaders. World Pulse lifts and unites the voices of women from some of the most unheard regions of the world.

Chief Guest at Ramula HIV Support Group
Empowering the Future Generation

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Comments

Sarah Whitten-Grigsby's picture

Dear Ayunnie!

Thank you, Dear Ayunnie,

For your painful honesty, for sharing your grief and for telling us so much about HIV/AIDS in your country and in your personal life. I send prayers out to your dear brother: may he be resting peacefully, at last, in a kinder, gentler place, his health restored and the truth of his illness accepted lovingly by all those around him.

How terribly judgmental we humans are! To think that we judge those who are devastatingly ill, as if we are so far better than those who have contracted HIV/AIDS. We are not!

I greatly admire your ongoing work on this particular issue --both the disease and the stigma -- especially in the face of your grief for your brother.

Ayunnie, take heart, you will continue to garner support and respect, due to the enormity of HIV/AIDS and because it has ripped through your life in such a personal way.

I send you comfort across the miles, and thank you for this very important piece of work. May many, many people read it!

With Compassion,

Sarah

Ayunnie's picture

So Compassionate

Hi Sarah,
I am so touched with your compassion and very encouraging sentiments on this issue of HIV/AIDS and the demise of my dear brother. You have such kind words my dear. I appreciate and whole heartedly receive your comforting words across the miles. The journey was tough but through the grace and the feeling that I have initiated something in memory of my dear bro gives me strength to keep on keeping on doing it.

Thank you

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

pelamutunzi's picture

yes..

oh this story is so true for all african countries. here sometimes its poverty stopping people from getting proper care but more than anythinbg its stigmatisation. i feel research has progressed but its difficult to change mindsets. its very few people who will come out about their status because its associated with immorality let alone share so openly. i salute you. we all have suffered loss from this deadly disease would also love to do more in my country in regards to how language continues to discriminate people living with HIV. it is reallllllllllllllllllllllllllllllllly bad in zimbabwe.

thank you, be comforted in that what you are doing means less youths will lose their lives.

we may be powerless to stop an injustice but let there never be a time we fail to protest.
regards
pela

Ayunnie's picture

Stigmatization on HIV/AIDS

Hi Pela,
I totally agree that the menace on HIV/AIDS in almost all Africa countries is a reality. I will urge to also continue with your vision on doing something on this deadly disease in Zim. Thank you for your contribution on this article.

Regards from Kenya

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Ayunnie's picture

Stigmatization on HIV/AIDS

Hi Pela,
I totally agree that the menace on HIV/AIDS in almost all Africa countries is a reality. I will urge to also continue with your vision on doing something on this deadly disease in Zim. Thank you for your contribution on this article.

Regards from Kenya

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Iryna's picture

Great work!

Fighting with such an invisible enemy as HIV/AIDS will take more courage from you, Ayunnie. With every step and every victory you will witness many loses. But it doesn't mean you need just give up, and you will not, I know! Just I want to say how much I respect such people, strong but with sensitive hearts.
Very capturing article, Ayunnie! You are doing a great work!

Warmest greetings from Ukraine,
Iryna

Ayunnie's picture

An Invisible Enemy

Hi Iryna,
Very touchy words. The fight on HIV/AIDS continues till we get to zero stigma, zero transmission and zero deaths. Thank you for the encouraging comments and I love the words 'Fighting with the invisible enemy'

Regards from Kenya

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

joy Spencer's picture

Thank you

Ayunne,

Thank you for such a powerful story. I was moved. Thank you for it and for breaking the silence and fighting stigma. It really is the other scourge. I also work in HIV and HIV-related stigma work. Keep on doing what you do and thank you again for sharing your story. I will read it again.

Joy

Ayunnie's picture

Breaking the Silence

Hi Joy,
Thank you too, I feel encouraged. The war on HIV/AIDS continues. Keep up the good work you are doing too on this scourge.

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Greengirl's picture

Touching and Moving........

I am touched and moved to reach out to you with words that come from a heart that shares your pains and concerns. You are a very strong personality and I am inspired that you are giving your best to ensure that the war on HIV/AIDs is won beyond your immediate community..

Thank you for sharing your story in such an inspiring manner. I know too that you will keep up the good work of informing the world about HIV/AIDS because information is POWER!

With much love,
Greengirl

Ayunnie's picture

Touching

Hi GreenGirl,
Thank you for the encouraging words. I was thinking of you and I wanted to forward for u some 'call for paper on GENDER & ENERGY' but i realized that it was meant just for Eastern and Southern Africa. This is part of it:

OSSREA is planning have to a book project that will include case studies from sub-Saharan African countries on the gender-energy nexus. Researchers are invited to write case studies on any one of the countries of Eastern and Southern Africa with a focus on the following objectives of the book project and related issues.

• To examine the gender difference in energy service demands and access to various
energy sources as well as to document the physical, mental and health burdens on
women, men and children caused due to the lack of energy services;

• To study in how far new and existing alternative sources of energy are presented to
and accessed by local population in a gender equitable manner;
• To study the successes and challenges of government, non-government and private
organizations interventions (policies, programs, and projects) related to introducing
new energy sources and enhancing energy access for both men and women;
• To analyze the implications of international agreements, MDGs and poverty reduction
programs on addressing women and men access to affordable and cleaner energy
sources and technologies;
• To discuss the role of gender in the development of energy policies, projects and
programs and evaluate the degree of mainstreaming gender into energy policies; and
• To examine the gender, poverty and energy nexus in rural and urban settings

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Y's picture

True bravery comes from

True bravery comes from channeling emotions like sadness, grief, and anger into action. you, Ayunne, are a hero. Until we are all taught to understand our bodies are sacred vessels that we should cherish and use for universal good, we will continue to seek the escapes from our shame that are provided by sex, drugs, and alcohol. You have told your story well.

I pray that your efforts at education of our youth bear much fruit.
Blessings,
Yvette

Yvette

Ayunnie's picture

True Bravery

Hi Yvette,
You are a true encourager. Yes my dear, I have realized that silence and shame is bringing more harm than good. As much as I am still grieving I feel compelled to do something. I believe the course of educating the youth will bear fruits. However the recent statistics that were released on 19th August 2013 made me extremely sad, the statistics declared my county -HOMA BAY COUNTY to have the highest prevalence rate of HIV/AIDS, they say:

The National Aids Control Council has declared HIV infection a disaster in Homa Bay County. According to figures of a research by NACC in collaboration with the National Aids and STIs Control Programme, HIV/Aids prevalence rate in the county stands at 27.1 per cent. By the end of 2011 Homa Bay had 150,000 people living with HIV, where 85 per cent were adults. The research indicates that women are leading in HIV infection compared to their male counterparts. It shows that 10,000 of the 40,000 women who become pregnant every year in the county are HIV positive

All in all, no giving up..today at SOY stakeholders' meeting, these HIV statistics were analyzed and I was impressed by one idea from a youth of doing condom and HIV animations then show casing them to the community.
THANK YOU FOR LISTENING TO ALL THESE! YOU ARE THE REAL CHANGE AGENT AS YOU LISTEN AND ENCOURAGE US FOR BETTERMENT OF THE UNIVERSE!

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Robyn Lui's picture

The Power of Courage

Dear Ayunnie,

Thank you for sharing your story and solution with us. It takes enormous courageous to be so open and honest about the loss of your brother. Your grief is both personal and universal.

For me, the shoes were very symbolic. It was an object of value and a symbol of journey. And my friend, you have been on a journey to raise awareness about HIV/AIDS. You have shown people how to walk a mile in someone's shoes, to be compassionate and to know change is possible. Your willingness to do the challenging the work of changing hearts, minds, and behaviours is very powerful. Ayunnie, you are a leader and a role model for women. Keep up your good work.

Best wishes always,
Robyn

Ayunnie's picture

Power of courage

Oh Robyn,
I am so moved at how you have interpreted the 'shoes' and its makes a lot of sense. I was bothered by the number of times my bro reminded me to buy him shoes! Thank you for the revelation, because he was compelling me to be on the move and bring change and address the alcoholism and HIV menace! NOW I UNDERSTAND! The journey on HIV/AIDS continues until we get to zero new infections, zero stigma and zero deaths.

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

binapatel33's picture

Very powerful

Thank you for sharing your story. What I really liked about your story, besides it being well written is that you are taking action to combat it!

Kind Regards,
Bina Patel
hc Mediate, LLC
www.hcmediate.com

Ayunnie's picture

Thank You

Hi Bina,
Thank you for the comments, were it not for your tireless efforts and Valarie's too as my mentors i wont be able to produce such a piece. I am so grateful for the work you two are doing in shaping my other career- As a citizen journalist and a digital activist!

Best Regards

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

Maura Bogue's picture

Great article

Passionate and personal piece! You write beautifully, and I love the angle of starting with oneself to changing the bigger community issues. One piece of advice is to summarize the definition of stigma more, as too much detail may disrupt the flow of the text.

Ayunnie's picture

Thank You

Thank you for reading my piece. But more than that, I am grateful for the advice of summarizing key words that come in an article, next time I will take note of this.

Regards

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

courtmiller03's picture

Commend Your Bravery

Thank you for being so open with us and sharing this story. You are truly inspiring. Stay strong and keep fighting to eliminate the stigma that faces those who are affected by HIV/AIDS.

Best,

Courtney Michelle Miller
Digital Communications Strategist and Multimedia Producer
http://courtneymichellemiller.org

Ayunnie's picture

Trully inspiring

Hi Michelle,
Very encouraging comments. we will not bury our heads in the sand and yet we are perishing! Change begins with me that is why i have decided to bring this out! Thank you.

Regards from Kenya

@ Nairobi KENYA
Women have impeccable character, if tapped society realizes quantum leap in development

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