When Hidaya Alawi was 20 years old and gave birth to her first child, the first thing she heard from the care staff was that her baby was "abnormal". The daughter Amina was born with a spina bifida. Like many other women in the same situation, Hidaya thought it was all because she had done something wrong. Today, Hidaya has dedicated her life to giving other women an opportunity to replace guilt with knowledge of how they can help themselves and their children have a functioning future.
After a long journey through the alarming traffic in the central parts of the multi-million city of Dar es Salaam - past modern buildings and areas with very simple houses with rusty metal roofs - the greenery suddenly opens up and the air becomes lighter. Fields are expanding and the clusters of homes and markets along the road are becoming fewer and fewer. When we arrive at Asbath's center, House of Hope, the city's slums are exchanged for birds chirping and a quiet murmur from swaying giant trees and palm trees. A small group of monkeys stand and look at us from a pile of sand some distance away, before they quickly swing up into the treetops.
Many of the women and children who come here to the center come from the Tanzanian countryside. Here they live in bunk beds in a clean and tidy dormitory with a checkerboard-patterned floor, and learn to take care of their children. They are also told that it is not their fault that the children were born with a spina bifida or hydrocephalus, nor that it is their fault if their husbands and families have chosen to abandon them. Because it is not an unusual scenario, says Hidaya Alawi.
-Many women who have children with spina bifida or hyrocephalus are abandoned by their husbands. There is a woman with us right now who has been rejected by her husband and her family. Her children have hydrocephalus. Right now we are thinking about how we in Asbath can help her when she travels back.
In rural Tanzania, it is obvious that the responsibility for the children rests with the mothers. During our visit, eight women are at the center with their children. They have come here to gain practical knowledge on how to take care of their children. But Hidaya emphasizes that the stay here at first is often about something else.
-The first is that the mothers must accept the situation for them and their children. Many of the women come far from here and they travel here alone. They lack knowledge about the challenges these children face.
Hidaya says it is common for mothers of children with this disability to seek help from local traditional healers, or "witch doctors," which often leads to their children dying because they never receive the proper care they need.
Hidaya completely lacked support from her surroundings after the birth
Hidaya herself is today 39 years old and noticeably proud of both the activities at House of Hope and her own journey. During our conversation, she speaks English, but switches to Swahili when it comes to more private things. She knows from personal experience how difficult the situation can be for a new mother of a child with a spina bifida. Before her daughter Amina was born, she had married a man who offered her a way out of a family situation that was marked by severe poverty and where all her brothers were in prison. Getting married felt like the only option. At the same time, Hidaya was already very strong-willed as a young woman and one of the demands she made for getting married was that she should be allowed to continue her studies and get an education.
After the birth, she was not at all as sure that life could be as she had imagined.
-Now I feel happy to have had my child. But when I had just had my daughter, I wondered if I would ever be able to reach my goals. Caring for a child with a disability takes a lot of time, she says.
Immediately after the birth, she received no support at all from the care.
-When the nurse saw my child, she said that the child was abnormal, and showed me the wound on her back. I tried to get more information from the doctors, but the answers I got just confused me.
She did not receive any support from the child's father either. He had problems with drugs and more or less disappeared from the family life. But for the first few years, Hidaya stayed with the man's family with her daughter. She was then forced to live with a mother-in-law who believed that it was Hyidaya's fault that the girl had been born with a spina bifida.
-She rejected the child and said she was a curse and an accident for the family. In my family there is another child who was born with Down syndrome, so she said it was from my family that it came. At the in-laws' home, Amina's grandmother used to lock the door to her room so that the granddaughter could not crawl in there.
-When visitors came, she used to say that they would not touch my daughter because there was a risk that her "disease" would be contagious. Life at the mother-in-law's home was painful for the four years it took before she divorced her absent husband.
-It was hard, with constant quarrels. Sometimes I moved home to my family for a couple of weeks, but then I had to move back again. After all, I was married, she says.
It is not uncommon for children born with disabilities in poor countries to be considered to have suffered a curse, which is a punishment for the sins of their parents, and women in particular. In Hidaya's case, her own family instead believed that it was the mother-in-law who had placed a curse on the girl.
They therefore turned to a traditional healer, a so-called witch doctor.
-But the witch doctor said that it was not a curse, but that the child was God's creation. I got support from my family because I cried so much. They said I would trust God to help the child.
"When a child with a disability is born, the blame is often placed on the women."
Thanks to Hidaya coming into contact with an organization, she was able to ensure that Amina received care at a private clinic, where Hidaya also learned how to take care of her daughter. Through the organization, Hidaya also received additional training and a job over time. She educates other new mothers about spina bifida and hydrocephalus. It is a job she has been doing for over ten years. For some years now, she has been chair of Asbath.
Hidaya begins a new lesson for the women who are currently at the center. The women sit down with their children on two large rugs in a conservatory with a tiled floor. The roof provides protection against the heavy rain that comes suddenly and replaces the strong sunshine.
-It is very important that you use clean water and that you first wash your hands thoroughly, says Hidaya while she shows the mothers how to help their children with the catheter they need to be able to do their needs.
The women listen attentively and ask questions, while holding their children in their arms or letting them rest against one of the large pillows that are scattered on the carpets. The concentrated mood is occasionally interrupted by laughter when one of the women intervenes. The help offered here at the center is unique, but the parents' association Asbath also has several local associations out in the country that offer education. The organization also arranges meetings with government representatives and local care clinics, to increase their knowledge of spina bifida and hydrocelafus.
-Many doctors and nurses have very poor knowledge, says Hidaya.
Today, Hidaya lives without a husband with her daughter and younger son on the other side of town, which means a long bus journey every day to work. It has gone well for her daughter. Amina is today 18 years old and has, thanks to Hiidaya's commitment and contacts, managed to get an education at a private school. Now she goes to high school and dreams of entering the medical line, Hidaya says proudly. Amina can handle most things on her own and knows for herself when she needs to go to the toilet. But far from all children born with spina bifida or hydrocephalus have the same luck as Amina - who has had access to both care and a parent who has understood her special needs.
-When a child with a disability is born, the blame is often placed on the women. The locals often think that this is because the mother has previously used, for example, birth control pills. But it is even more common to think that the reason is that there was a quarrel in the family during the pregnancy, or that the woman has been bewitched.
Hidaya never forgets how it felt in the first years after she became Amina's mother. During that time, she believed that she herself had caused the girl's disability - by having called down a curse or by having taken the wrong medicine for her recurring stomach ailments. It was only when Amina received help at a real clinic that Hidaya learned that spina bifida could be due to folic acid deficiency, and that her daughter's condition had nothing to do with the medication or any curse.
-I was so happy and thanked God when I understood that it was not me who had caused the problem. I promised to take care of this child, says Hidaya.
