Hasfa is 14 years old and lives in rural Uganda. She comes from a large family where the older children must help look after their younger siblings, despite being children themselves. Her father works long hours in the fields while her mother looks after the children and their home. The family have very little money and often struggle to get by. Enough food or access to appropriate medical treatment isn't always an option for them. Education is not a priority for the family, especially not for their daughters and most of Hafsa's friends do not attend school.
Hasfa's situation is not unique for many children and their families in Uganda, but there is something that makes her life harder. She is deafblind. When Hasfa's mother was pregnant she contracted rubella. The disease is relatively mild with flu like symptoms. However, for pregnant women and their unborn child, it is an extremely dangerous disease. Every day around the world approximately 100,000 children are born with congenital rubella syndrome (CRS). The impacts of CRS can be severe, including heart defects and learning disabilities and it is also a leading cause of deafblindness. Vaccinations exist, but are not routinely delivered across East Africa.
Being deafblind anywhere in the world is a challenge that requires specialist support. However in the developing world being born without sight or hearing can have a devastating impact on your life.
When Sense International staff first met Hasfa, at 10 years old she had never been able to communicate with her family. They understood that she could not see or hear but didn't know how to begin to communicate with her. As a result Hasfa had spent most of her life shut away from the outside world. Her parents were so afraid that she would get lost or hurt herself that they kept her inside the house all day. Neighbours and her extended family were afraid of her, and were concerned that her condition was catching.
Often in Uganda disabled children are considered 'witch children' who have been born with a curse. Parents often find themselves ostracised from their local community and rely on the advice of local healers in search of a cure.
An outreach officer from Sense International heard about Hasfa from one of her neighbours and went to meet with her family. Although her disability was complex, it was quickly apparent that she was a bright child desperate to learn to communicate. Over the coming months Hasfa and her family were gradually introduced to a tactile form of sign language and learnt to communicate with each other. Hasfa's life was transformed. For the first time she was able to tell her family when she was thirsty or that she wanted to play. Her progress was quick and after a year she was enrolled in a school for deafblind children.
Whilst at school Hasfa has learnt lots of new skills and is able to help with basic jobs around the home. She is also teaching other children and her brothers and sisters sign language. Hasfa can now play with the other children in the village and is no longer isolated.
This week is Deafblind Awareness Week and Helen Keller Day and an opportunity for us to celebrate the achievements of deafblind people like Hasfa around the world. With the right help and support deafblind people can achieve a great deal. But as Hasfa's story shows, breaking through traditionally held beliefs and teaching basic communication skills is essential to ensure that deafblind children can have a brighter future.