For them, this is the time they realized losing their mother would bring unbearable pain.
Barely days later, their grandmother started using separate cups and plates. Contrary to the caring nature that grandparents are known for, this one was different. She at times hid the much needed ARVs that her grand children were supposed to take. The girls accuse their grandmother of even rationing food that they needed to keep them healthy.
A few weeks later, disaster struck. Josiane’s little sister was admitted to hospital. This was the opportunity their grandmother had been waiting for. She immediately sold the house and proposed to take them to the village. Smelling the rat, Josiane notified a friendly neighbour, according to her. Up to now, the same neighbour is the one taking care of the girls.
This is a typical story of outright rejection and campaign to have people living with HIV/Aids discriminated against – among hundreds that the Legal Clinic of the National University of Rwanda is confronting. The clinic has since 2005 been providing free legal support to thousands – often very poor.
Faced with growing cases of stigma reported by its HIV positive, last year, the clinic established an HIV and Human Rights Unit as its outreach program aimed specifically at helping the HIV positive clients.
“Stigma has become part of the normal living routine among almost all patients”, says Mr. Mulisa Tom – the Outreach Program Officer with the Legal clinic. “It has even led to individuals stigmatizing themselves by completely making sure nobody ever comes to know of their status because they are scared of imminent isolation.”
Mr. Mulisa says the case of Josiane and her sister is just a small portion of the amount of cases that they have recorded.
The guardian (neighbour) looking after the two girls brought them to the Legal Clinic in February last year asking for intervention in a case that had left the girls without any home.
“We assessed the case and followed it up. The person buying the house was told the seller (grandmother) had no right over the property”, Mr. Mulisa explained.
The case surrounding the house is still in the courts of law with the help of a lawyer paid for by the Legal Clinic.
Ms. Nyiramariya Serathine – Head of the Ambrella organization of associations for people living with the virus in Huye district – says vigorous government programs against stigma have had tremendous impact. Attitudes are changing but their still remain challenges.
“Cases that still exist which some of our members have reported include different treatment at work and not accessing bank loans”, explains Ms. Nyiramariya – who has lived with the virus for 20 years.
“For example when you are absent from work, your superiors can hold that to dismiss you. Of course they will pretend like it is not your status influencing them but we often note case that have happened.”
The Ambrella organization brings together 60 associations in Huye district total some 2683 members. Among them, 1729 members are on ARVs.
Campaigners agree that vigorous media campaigns are changing attitudes. Specific reference has been made to URUNANA soap opera on BBC Great Lakes Service and state radio – that last week won an international award in the UK. Another is an advert mentioned has been running on several local radios that brings up one character telling the other that the infected child is just like any other.
During a community outreach session by URURANA in Western Province, a member from the audience said: “I used to over-charge clients I suspected of being HIV positive and sent them away, but after listening to URUNANA programs on stigma I abandoned the habit. I now take them as normal people.”
Influential sections of communities like the religious leaders have all been mobilized to counter stigma. Targeted groups have been rural areas and the youth. Civil society and government’s partners have also been involved.
Disturbing as some of these cases of stigma are, the situation that Josiane and her little sister have been through – rejected by their own families – is not unique.
In Gisagara district of the same province, Jean Damascene Habimana discovered he was HIV+ last year. His three brothers teamed up and grabbed his piece of land. Being the physically disabled he is, Damascene claimed unsuccessfully for what belonged to him.
“They (brothers) used to tell me ‘we highly doubt if you will even last up to December’”, Jean Damascene apparently narrated to the clinic staff – seeking to have help. He regained his property after intervention from the Clinic but not the family love.
During the days when he was expected to travel to the health center to have his ARV dose, his brothers are said to have always hid his bicycle. These were just acts aimed at discouraging him from having the life-saving medication that he and hundreds others in the same district depend on.
“Cultural influences suggesting that when somebody is HIV positive then they are sexual maniacs coupled with ignorance at times is what makes such families to discriminate against those infected”, says Mr. Mulisa from the University Legal Clinic.
“In such cases, we come in with sensitization, mediation – and in situations where we feel there are legal grounds we engage that as well.”
In February this year, Gasana Dieudonne, 29 years, from Nyaruteja district in the same province was told he had contracted HIV. As part of the counseling routine at the local health center, he was asked to bring over his wife Jacqueline – aged 22. She was diagnosed negative.
Jacqueline dumped her husband and was encouraged by her family to remarry. She demanded for divorce which her husband declined and instead sought intervention from the Clinic.
Mediation and sensitization about the virus by the Legal Clinic encouraged the youthful Jacqueline to return to her husband – but they are living in separate bedrooms. This approach essentially calls for involvement of the affected people themselves in ending cases of stigma and discrimination.
The Clinic’s HIV/Aids Outreach Program has been regularly working with 10 associations of patients in Huye district – each with up to 100 members. There are believed to be more than 70 associations in this district alone.
In the rural Gisasara district, the Clinic has been engaging just three associations – memberships ranging between 80 and 120.
“We would want to have working relationships and on-the-ground regular visits to all these associations but due to resource constraints and very insufficient staffing, it is practically impossible to work in all these areas”, explains Mr. Mulisa.