Sonnia Margarita is a 68-year-old woman with deafblindness from Ecuador. When she was twelve, she had an accident while playing with other children. She hit her head which resulted in retinal detachment and was unable to access immediate medical care in her region. She was taken to Colombia in an attempt to receive higher quality medical care. After several treatments and procedures, she was prescribed medication that eventually led to hearing loss. By the age of fourteen, she was completely deaf and blind.
It was very emotional to become deafblind as a teenager, during this highly social period of life when the world expands. These traumatic events left her feeling emotionally empty and cut off. However, her family provided her with love and support and made her realise that she was not alone. They played a key role in supporting her social inclusion, for example, to attend parties and dances.
Once she accepted her condition, she was open to the possibility of learning new ways of communicating. She uses combined methods of communication, which is good practice for persons with deafblindness. She learned how to read Braille, and since there were no rehabilitative services for learning deafblind communication in her area, she developed her own form of tactile communication. Initially, her family served as her first interpreter-guides/Deafblind interpreters, and they also hired tutors to home-school her for much of her education. However, Sonnia Margarita also taught others how to communicate using her form of tactile sign, which made her less dependent on her family. She also uses a ‘tele tact’ or ‘teletouch’ machine that enables a person to type words into a keyboard which is then displayed in Braille on a grid for Sonnia Margarita to read. This has been helpful when communicating with people who do not know tactile signs. Since she acquired deafblindness as a teenager, she speaks Spanish, her native language.
Sonnia Margarita has four university degrees and has had a successful career as a teacher, teaching a wide range of subjects and age groups. She attributes this to her ability to explain very technical concepts clearly, demonstrating that communication is not just a capability but one of her greatest strengths.
She uses innovative ways to communicate and live independently. For example, the doorbell activates fans throughout the house, which alerts her that someone is at the door. She puts her hand through security bars, and if it is someone that she knows, they can use tactile signs to communicate with her. She also uses a wireless landline phone to call family or her interpreter-guide/Deafblind interpreter, using the touch tone buttons, which vibrate as a means of sending short messages in case of an emergency.
Sonnia Margarita says that persons with deafblindness need the following to ensure communication:
Communication is a right that is often taken for granted. For persons with deafblindness, it is the key to social inclusion, livelihoods, and living independently, as the example of Sonnia Margarita clearly presents. Some persons with deafblindness have managed to learn communication methods without government support or CBR programmes, but the conditions of their individual circumstances, for example positive experiences of family support and financial means, have often been essential factors for success. Government investment into CBR programmes to support early interventions to develop communication methods and support life adjustments will ensure persons with deafblindness are not left behind.
