With appropriate support, they can attain different social, vocational and educational backgrounds to be able to take up different jobs and roles.
On many occasions in Uganda, parents with children who have disabilities have resorted to hiding them behind doors and at times tie them with ropes.
When this 28-year old woman (names withheld) gave birth to a deafblind baby eight years ago, she only tolerated her for one year. She had been married to Nsada, a resident of Kiwanyi village in Iganga district, when they had this baby as their first born.
Relatives say the baby girl, who was later named Resty Naigaga, had started walking, but would knock everything in her way which used to annoy the mother. Although her eyes were open, she could not see.
Instead of seeking medical solutions, she resorted to beating the girl and shouting at her to sit in one place to avoid falling and knocking things. Unfortunately, the baby's case was not only being blind, but she was also deaf, so she couldn't hear anything however loud the mother would sound. Though this was her first born and the first marriage, the child's disability forced her to end the marriage. She abandoned her with the husband.
Grandmother gives help:
Ndija Naigaga, in her 50's, a resident of the same village, could not allow her granddaughter to grow without love. She was not the biological mother (never produced) to the baby's father Nsada, but she had helped in raising him. She asked Nsada to give her the girl who had just turned one year.
Her neighbours say Naigaga would put her the girl on her back and move with her wherever she went. The girl was not stopped from advancing in her movements, but Naigaga always made sure that she cleared her way of any dangerous objects.
Naigaga gets a new life
Juliet Barungi, a teacher at Kiwanyi Primary School, lives in the neighbourhood where this girl was living and she thought of a solution when this girl reached school-going age.
"I visited Buckley High School in Iganga to see how they can help her with education," Birungi explains. Fortunately, Buckley school already had partners known as Sense International - Uganda, which helped many children such as Naigaga. Sense International - Uganda is an organisation that supports deafblind children and adults in Uganda.
Josephine Akiru, the country Representative, Sense International - Uganda says all persons with deafblindness once empowered can become active members in the society where they live.
"We know that deafblind people can with the right support be active members of their community, learn new skills and may become independent," she explained.
When Sense learnt of Naigaga's condition, they visited the area to search for a nearby school as they believe in these children being included into the mainstream system. Because the mainstream education system in Uganda is not equipped for children with deafblindness, this organisation initiated a community-based education programme in 12 districts to see how these children can be assisted. It was through such a programme that Juliet Barungi was taken to Buckley school in Iganga for training in handling cases of deafblind children so that she helps Naigaga. This was also the time when Sense International took Naigaga for an eye operation at Mengo Hospital.
According to Irene Kharono, the programe funding manager of Sense International, Naigaga's operation was successful. "Though she cannot hear, at least the operation enabled one of her eyes to recover its sight and she is now able to see what her guide teacher tells her to do," Kharono explained.
Naigaga's grandmother was so excited about this progress and she thanks Sense International for helping them.
Early this year, Naigaga joined Kiwanyi Primary School in P1. The only snag is that her guide teacher Barungi teaches P3 and only visits her class once in a while to help her understand what is being taught.
What is deafblind?
A report from Sense explains that deafblindness is a unique disability that combines sight and hearing loss, affecting a person's ability to communicate, to access all kinds of information and to get around. People who are deaf-blind have a wide variety of both vision and hearing loss. It adds that people with this condition have a wide range of abilities and disabilities. Some will have enough sight and hearing that their lives can be transformed just by the provision of spectacles and hearing aids. Others will need more specialist support and may have additional physical or learning disabilities.
"With appropriate support, they can attain different social, vocational and educational backgrounds to be able to take up different jobs and roles," explains Akiru.
She says deaf-blind people use many different ways to communicate like sign language (adapted to fit their visual field), tactile sign language, tracking, and tactile fingerspelling, print on palm, tadoma, Braille, speech, and speech reading. She adds that communication methods vary with each person, depending on the causes of their combined vision and hearing loss, their background, and their education.
State of deafblind in Uganda
Uganda has a population of over 35 million people, with an estimated 14,000 persons with deafblindness. Sense International reports indicate that very few of children with deafblindness receive any form of education due to the fact that this condition is a low incidence disability.
The same report shows that the complexity of this impairment has confounded government and non-governmental organisations as well as schools and teachers. These children have been excluded from education, and with little hope of schools making an effort to reasonably accommodate them. Kharono further says in order for deafblind children to be able to study well, they need trained teachers, access to learning materials and adequate or appropriate learning environments, especially teaching assistants.
"For a child with deafblindness to be introduced into a mainstream school environment that is not adapted to his or her needs, it could have very negative consequences on his or her development, security and dignity," she explained. She says children in the end face barriers in acquiring knowledge, skills, attitudes and competencies, including basic life skills that are necessary for growth and development.
Where Deafblind learners can access education in Uganda
Sense International identifies schools like St. Mark VII School for the Deaf, Bwanda located in Kalungu district, Uganda School for the Deaf, Ntinda located in Nakawa Division, Kampala and Buckley High School located in Iganga District.
Despite numerous meetings between Sense team and the Ministry of Education over the issue of the inclusion of deafblind children in mainstream schools, there is little hope. "There is no indication that the Ugandan government is taking progressive steps to initiate the inclusion of children with deafblindness into mainstream schools.
More specifically, the mainstream curriculum has not been adapted; there is no provision of teaching assistants, which are essential to ensuring that children with deafblindness can learn and communicate," the report indicated.
The report also showed concern that there is insufficient teacher training to prepare teachers for children with deafblindness. For example, Sense International Uganda initiated a certificate module at Kyambogo University to develop skills in teaching children with deafblindness for Special Needs Education teachers.
However, the continuation of this programme is dependent upon further grants, as there is no government funding to support its continuation, despite the development of the module, and there appears to be no effort to adapt the module to train mainstream teachers. These types of initiatives, such as teacher training modules, should be incorporated into broader government training programmes for mainstream schools.
"We also recommend that the Ministry of Education and Sports establishes a mechanism for including specialised modules, such as the Sense International Uganda's module on teaching children with deafblindness, into core teacher training programmes," the report indicates.
The same report indicates that in 2011, the Ministry of Education and Sports, in collaboration with CSOs and other stakeholders, drafted a policy on Special Needs and Inclusive Education intended to address concerns of access, quality and equality in education.
Specific aspects that the policy will address many key areas for children with deafblindness, including specialised teaching materials and equipment, support services, curriculum adaptations, assistive devices, capacity building, assessment, infrastructure and funding. Sense team says so far, this policy has not been approved by the Government for implementation, and while it sits idle, children with deafblindness continue to be excluded from education.
"We recommend that the Government of Uganda approves and implements the Special Needs and Inclusive Education Policy and ensure appropriate and progressive levels of funding to support its implementation," shows the report.