Deafblind Awareness Week 2016

Deafblind Awareness Week is celebrated each year from 27 June to 3 July. This week also coincides with the birthday of the prominent 19th century deafblind activist, author and lecturer, Helen Keller.

CBM with its alliance partners on Deafblind International supports Deafblind Awareness Week, celebrated this year from 27 June to 3 July.

Incidence of deafblindness

The number of persons living with deafblindness is difficult to find out, particularly in low-middle-income-countries. What is known is that there are some causes of deafblindness which are preventable, such as Rubella. This is one of the major causes of deafblindness in low-middle-income-countries. With increased vaccination programmes, the incidence of Rubella can be reduced dramatically. There are more vaccination programmes available in low-middle-income countries but here are also challenges for these to be implemented on a truly national basis.

Early Identification and Early Intervention

At the same time as providing vaccination programmes, such as Measles, Mumps and Rubella (MMR), it’s important to identify early signs of vision and hearing loss. Early identification with early screening programmes at health centres and through community based programmes are essential. Not all persons living with deafblindness are totally blind or totally deaf, most have some hearing and sight. As no two persons are the same, the intervention required are equally individually tailored. Those who have useful hearing, but little sight need to focus more on learning mobility and orientation skills, learning Braille for school and using the hearing they have through the provision of hearing aids; however those with little hearing, but have some sight, need to learn signed communication skills, possibly use low vision aids. In all cases, it’s important to focus on the needs of the individual and make sure that they have access to health and educational opportunities, just the same as other members of the community. The role of family members, particular those of parents or primary caregivers cannot be underestimated, take the case of Annika.

Case study

Annika is a girl from a fishing village on Lake Victoria in Tanzania. She was born with deafblindness, which was identified at a very young age. Despite an early diagnosis, her mother had little hope regarding Annika’s prospects for the future and showed little interest in her daughter’s potential. At the age of 7, Annika had surgery on her eyes, which restored some of her vision. Soon after, the local school for the deaf opened a deafblind unit and Annika started her schooling along with 5 other students.

She is now learning Tanzanian Sign Language, as well as literacy, numeracy, and daily living skills. She has many friends and enjoys spending time with others. Recently her mother has shown much more interest in Annika. She is no longer ashamed of her daughter. Traditional beliefs of being cursed, witchcraft, and taboos are slowly being replaced by a more positive attitude as family and other members of the community are beginning to see Annika’s abilities and progress at school.
Annika attends a programme supported by CBM in Tanzania, East Africa.

Who else is affected by deafblindness?

With an ageing population, the incidence of deafblindness is likely to increase. Sight and hearing loss can happen gradually. Often the loss is so gradual that neither the individual or family members notice the dual sensory loss until there is a marked loss in functioning. One indication might be withdrawal from social events, lack of willingness to join in social gatherings; things that the individual may have enjoyed doing in the past. The dual sensory loss can lead to feelings of isolation and withdrawal and depression. It’s important to support older people experiencing deafblindness.

Others may be born with a hearing loss, but gradually lose their sight. This is called Usher Syndrome. The syndrome is genetic and affects vision, hearing and, in some cases, balance. It’s important to note that although persons with Usher Syndrome may have their challenges, they can also have relationships, and lead full, independent lives.