Since 1984 when the first case of AIDS was discovered in Kenya, it remained a mystery. Those suspected to be infected were taken to be sexually immoral members of the community. There was so much fear and stigma and people were dying miserably, without support from their families, hospital staff and the community at large. Religious leaders were up in arms that HIV positive people were sinners and fornicators, who were responsible for other people's suffering. In fact, they had only themselves to blame for their suffering and they deserved what they were going through.
The single hardest day of my life was in 1988, when I heard with my own ears, "Asunta, I am sorry, you have AIDS." I was told that I had six months to live. Everybody including the pastor and my own family were preparing for my death. I did not fear dying from the disease, but I feared living with the truth. It took me several months to come to terms with the bitter truth and the reality. I kept saying, "It isn't possible! This can?t be real! It can't be me." Many times I wished I were in a dream. For three miserable and dark years, I suffered the faces of agony. I was in denial.
Once I had accepted the truth, I expected everyone else would accept it too. I was wrong. It turned out that instead, I received rejection, isolation, anger and humiliation. I was not at all prepared to face that. This however did not stop me. I had a duty towards Kenyans and the whole world. I did not choose to be infected with this dreaded AIDS virus.
As co-founder of Kenya Network Of Women With Aids (KENWA), my mission has been to ensure that nobody experiences the same stigma and isolation I faced when I tested HIV positive. In my endeavours, I preach compassion, dignity, courage, risk awareness, the need for unity among people infected with HIV, and the promise of hope. I want others to realise that this virus can infect anyone and that those living with it are no less human. It is for this reason that I have gone public, and I am willing to be a living example to others. No matter what others say about me, I need not make myself a victim. I detest the term "AIDS Victim", which is at times used to describe me.
It was against this background in 1993 four women and myself, all living with HIV and AIDS started a meeting group. We decided the time was ripe for us to do something about our HIV status and that of the wider community. We felt, especially as infected women, that we had to do something to protect our children from what we were experiencing.
Little did we realise that we were about to start a chain reaction reaching deep into communities and creating hope for other people living with the infection. Consequently, we gained recognition and respect that further boosted us to push for registration of a non-governmental organisation: Kenya Network Of Women With Aids (KENWA) in 1998.
By creating this organisation, we knew that at long last we had a platform to air our views, our pain of being discriminated against, stigmatised and isolated. It also served as a forum to further seek acceptance and solidarity from our families, relatives and community in coping with infection and mitigating its spread. To achieve this we sold our ideas to the government, donor communities (both local and international) and any other parties, religious groups and individuals who would listen.
During this period we operated from a small office, which the landlord kindly gave us. Besides this, we were kept afloat by nominal funds from well wishers and deep voluntary commitment from our members. As we progressed, luck shone our way in 2000, when Pathfinder International and the Catholic Organisation for Relief and Development Aid (CORDAID) supported our programmes.
With their support, we have been able to start drop in centres in three Nairobi slums: Mathare, Soweto and Korogocho. We chose these areas because they are where the majority of the founding members come from. We are now receiving calls and demands to expand and initiate similar activities in other districts.
Today, KENWA has a membership of over 4000 HIV positive women and extends a helping hand to over 400,000 women and their families. To better serve the needs of our members, we mobilised local administration and the community. The President's office, community and religious institutions, among others, came to our aid and soon we were receiving relief food from government, and free treatment for people living with AIDS in special programmes, while donors helped us to start a medical facility in one of our drop in centres.
With the support of many volunteers KENWA provides support and counselling, medical treatment and referrals to health centres, and food assistance. We also visit affected families, give home based care for the bedridden and create opportunities to alleviate poverty. KENWA involves people living with HIV and AIDS as resource people in its advocacy, education and community mobilisation, which includes sharing their experiences of living with HIV and AIDS.
We tell those we help, if KENWA has helped you to live one more day, you must do the same for someone else. This works well, as HIV positive women are anxious to help others when they have been empowered to live productive, hopeful lives. People often come to me and say, "Asunta, I no longer need you to provide food for me. I am able to take care of myself now and I can also provide food for two orphans." KENWA's children receive material and psychosocial support. We also encourage mothers to prepare their children in advance before the event of ill health or death by preparing their will and identifying a future guardian.
I would like to say that some of our greatest achievements, which are also mine, are that we have given AIDS a human face and have earned the respect and acceptance of our families and the entire community. Today we talk about sensitive issues like sex, condoms and AIDS, thus ending stereotypes and ignorance.
In 1999, when we called on the government to intervene, AIDS was declared a national disaster. We have seen every sector involved in the fight against AIDS since then. This was another breakthrough. Presently our network is involved in eight Constituency AIDS Control Council Committees, while one of our members represents the interests of people living with AIDS at the national level.