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Olimbi: Fighting for the Rights of Her Sons - "Mission Possible"

Olimbi is a courageous woman who has been fighting for her rights and the rights of all people living with HIV for years in Albania.  

The first story tells about how she fought for the rights of her twin boys to an education. The second story shows how she dealt with the challenge of disclosure of her HIV status to her teenage son. In Albania, a mother living with HIV has used her professional experience as a lawyer to fight for the rights of her twin boys to education, challenging institutional and community stigma and discrimination.

When she first discovered that she was HIV-positive, Olimbi was devastated. “The first effects are shocking. It is not easy at all to have a positive HIV result. And for a parent, the first thing that comes to your mind is your children. Who was going to take care of my children? Who…? “Olimbi’s fears were confirmed when her children were denied access to educational support. “I had been waiting for an answer from the Ministry of Education for two years, but I received only silence. My children are considered as belonging to one of the groups in need, but the state does not give them any financial support. I pay taxes just like other citizens, but I do not receive basic public services in return, such as the education of my children,” Olimbi says. Other parents protested against the school enrolment of Olimbi’s children: “Take your children with you and kill yourselves, all of you, and leave us and our children alone.”

But rather than acquiesce, Olimbi fought back. She organised meetings between physicians, educators and parents in the community to dispel myths that her children could infect their children. Olimbi received support from the school, and teachers communicated with other parents the law, which assures children access to education. Olimbi’s struggles prevailed, and her sons were admitted to school. She reflects, “The entire neighbourhood was alarmed by my children starting school. They all talked about only that, seeming to have forgotten that we had been living there for years and had not caused trouble to anyone. How can people be so selfish?”

Now, Olimbi has established the Albanian Association of People Living with HIV/AIDS and feels that she has gained the support of others like her. She encourages others to fight against stigma and discrimination, for the sake of oneself and one’s children: “It is not easy to fight against the mentality of an entire society. Now I understand and I know that one has to work hard in life and never give up. Giving up is the simplest action in life. I chose to fight… I have fought for making my life longer, because first of all I am a mother and while fighting for my life I fight for that of my children.”

She is optimistic about the future of her family: “My biggest dream is reaching the moments when HIV is not a ‘permanent guest’ in my family and seeing my children grow up healthy… We even have a lot of beautiful and happy moments together today. I see joy and happiness in my children’s eyes.”

***

Olimbi – Disclosing her HIV status to her teenage son

“But you are my hero’ he said with the tone of an adult...”  Olimbi is not alone, she has her son by her side.

"Mom, I met this girl today!" A magical moment in the life of a teenager, it is lived and remembered with the same happiness and vividness also by the mother, who at this point realizes that her child is becoming a man. However, Olimbi had been dreading this moment for quite some time. Her 15 year old son is HIV positive; like his younger twin brothers; like his father who passed away. Olimbi was anxious about the day she had to tell her son that he, too, had contracted HIV while a fetus in her womb. In a country like Albania, this virus causes not only health problems, but above all, it causes social and psychological problems.

"For two years, since my son started the seventh grade, I had been thinking about telling him," Olimbi begins. "Technically I had all the answers, however, as a mother, I was very hesitant, especially since my son is so sensitive." So, Olimbi became “strategic.” She used the opportunity of a regional HIV/AIDS conference and travelled there with her son. She put him in contact with young people 18-20 years old so that he could see and hear for himself the stories these people had to tell. She could see that her boy had plenty of information on the issue, but still could not summon the courage to confront him with the truth.

Two weeks after the conference, the boy invited his mother for a cup of coffee and a chat in a coffee shop and told her about the girl. Before Olimbi could utter a word, he cut her short: “Ma…she knows." And so Olimbi learned that the boy had known for three years that he was HIV positive! He had recognized his mother on a TV interview when his twin brothers were deprived of the right to an education by uninformed parents who refused to allow their children to be in the same class with the infected twins. He saw some of her files on a laptop; he had consulted all the materials and leaflets he could find and had endured the pain all by himself. The mother’s eyes were inquiring why he had kept this inside himself for so long, so the boy answered: "You have had more than you could take and I did not want to add to your problems."

"At that moment I felt like flying," Olimbi recalls with her eyes shining. "The boy hugged and kissed me. I told him how I had been tortured by the thought that he might hate me for being the cause of his condition. ‘But you are my hero’ he said with the tone of an adult. ‘It will take a little while until people learn about your struggle against HIV, what you have achieved through hard work and you will be rewarded for all your efforts.’”

That day, not only did she regain peace, but she also gained a friend, a shoulder to lean on, and additional support to continue the struggle against discrimination of HIV-AIDS infected people in Albania. A struggle that began seven years ago, when all alone, with four children, three HIV positive and with no help whatsoever, she promised herself she would fight for a dignified life. She decided to fight for her rights and the rights of other people like herself. She created an NGO for people living with HIV. With UNICEF assistance, the organization offers multi disciplinary support, encompassing health, psychological and educational services for a group of HIV infected people, including 19 children. Through her organization, Olimbi is trying to establish a model of caring for this social group, all in accordance with legal provisions, which require that the various institutions work together to offer individualized support packages to every child. Olimbi believes that models work better than theories. "By demonstrating that HIV positive people are capable of living their lives like everybody else, are self-sufficient and no burden to anyone, we can fight prejudice and stigma," says Olimbi. She followed the same path with her son.
 
However, life is not so easy for people living with HIV. For six months Olimbi was without any income at all (currently she is chairman of the organization of people living with HIV and makes her living by working on donor-funded projects). She has friends, but she has never asked for help, for she hates to be pitied.  "I ate myself up. I spent the scholarship grant that my son received from the City Hall for being a brilliant student. I cried over every penny I withdrew from his bank account to spend on food." With a university diploma in economy, Olimbi experienced more than once the bitterness of being refused a job due to her HIV condition. Therefore, she made up her mind not to apply again until she is needed for who she is and what she is able to do.

Obviously, she says this out of hurt, because there is no way she can cut in the middle what she is doing. “We are still a long way from the minimum standards," she sighs. For three days she has not been able to meet the Director of the University Hospital Center (UHC) on account of delayed delivery of HIV medications for infected children due to some “gross irony”. For six months, blood viral loads have not been measured because of disagreements between the UHC and the Public Health Institute, although the protocol requires that the tests be made twice a year. Albania does not implement any prevention of mother-to-child HIV transmission (PMTCT) programmes, although this is obviously a critical measure.

Asked how she is doing, Olimbi replies softly: “I'm fine, but I feel very tired. Every day I learn about a new human drama. I have to take care of my children. The oldest son wishes to attend [a private] school, but I cannot afford to pay the fee for his education.  The eldest daughter is studying Law at the European University of Tirana on a partial scholarship. The twins are growing up."

The conversation turns again to the law and social environment in this country. She will talk about these in Vienna, when visiting there to receive the "Red Ribbon” international award, an important prize conferred in acknowledgement of efforts to combat discrimination.  Of the 175 nominees, 25 were elected. Among them is Olimbi from Albania. The day she learned of the prize, Olimbi had seen an angel in her dream. She had been overwhelmed by joy, but soon it gave way to sadness, because she had no close kin to share it with. For years she has had no contact with her family. She feels bad, but she has no time for this, for she has a lot to do. She has to meet the UHC Director about the medications. She has to negotiate a scholarship award for a teenage girl who wishes to become a nurse. She has to prepare for her trip to Vienna to receive the award and tell her story to the world. 

However, now she is not alone. Her son is by her side.

 

 

 

 

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