Helping people with disabilities to spread their wings

Imagine not being able to speak or express yourself in a conventional manner. Without this ability the world can quickly become a hostile place where it could be extremely difficult to develop your personality, talents and creativity to their fullest potential. Yet this situation is a reality for many people living with disabilities, and especially for those whose disability has caused them to have little or no functional speech.

Over the past 26 years the Centre for Augmentative and Alternative Communication (CAAC) at the University of Pretoria (UP) has endeavoured to improve the lives of people with little or no functional speech and their families by promoting augmentative and alternative communication (AAC) strategies. These strategies involve any method that can assist persons with little to no functional speech to communicate and interact more effectively with those around them. The strategies employed may be as simple as having a person point to a picture or use a gesture, or as complex as using a specialised high-tech communication device that actually articulates a pre-programmed word or message when the person presses a button.

It is against this background that the FOFA Project was first initiated by the Centre in September 2005. FOFA is a Sepedi word that means ‘to fly’ and, as the name suggests, the goal of the project is to help people with little or no functional speech to spread their wings and develop to their full potential. The project is the first of its kind in Africa.

As part of the project, a training programme aimed at young adults with severe communication difficulties was developed by staff at the Centre. The programme is based on the augmentative communication and empowerment support (ACES) model originally developed at Temple University in Philadelphia, USA by Dr Diane Bryen. The ACES model is a programme for young American adults who use communication technology (speech-generating devices or SGDs) to aid their transition from school to work and to help develop and refine their communication skills, including computer access and use for daily living, as well as job skills. The original American model was adapted for the South African context by CAAC staff.

The FOFA training programme currently offered by the CAAC facilitates the development of leadership and empowerment skills for youth between the ages of 18 and 35 years who have little or no functional speech and aims to promote their independence and increase their opportunities for employment. Participants are accompanied by their caregivers or personal assistants who are also trained to be effective support systems for their charges once they return to their own homes.

As most of the participants in the FOFA programme have had very little exposure to communication devices, the content of the training programme traditionally focused on communication competence, empowerment and employment issues. The training sessions are presented by CAAC staff, persons with a special interest in people with disabilities and the relevant government departments to ensure participants’ exposure to appropriate networks and skill building. The one-week programme is presented annually at the Centre on UP’s Hatfield Campus and culminates in a presentation by participants on the final day. During this event participants are given a platform to demonstrate the skills they gained through the training and also to inform the audience of their experiences, their new discoveries and dreams for the future.

This year five young adults from four provinces will return to participate in FOFA week from 7 to 11 September 2015 on UP’s Hatfield Campus. With the help of the Department of English at UP, they will explore alternative and creative ways of expressing themselves and who they are through writing, poetry and photography. They will also use these media, which enable them to claim personhood through self-expression, as advocacy tools to change negative perceptions about people with disabilities. Participants will be mentored by three young adults with severe communication disabilities who have graduated from the project.

The plan is to publish the participants’ creative works, supplemented by additional contributions from others using AAC, in a coffee-table book that showcases the talents of people who, despite their inability to speak, can share who they are through utilising various media.

On Friday, 11 September 2015, participants will share their creative works with an open audience. Please join us and be inspired by young people who are finding their voice through various media. The event will be held from 09:30–11:00 at the UP Conference Centre, Hatfield Campus.