Unicef Belgium wanted to ask disabled youngsters with serious communicative difficulties and/or multiple difficulties (12 – 21 years old) about their participation in society. This is not possible with a questionnaire. In our research we wanted to open potentialities to build the story of the disabled youngsters. We have observed, listened and talked with youngsters and important people in their surroundings. We have turned representations of who the youngsters are and how they live into a portrait (Lawrence-Lightfoot, 1997).
We want to present the portrait of Ethan. We meet the people, places, activities, impressions and expectations that are very important to him. His lived experiences guide us through his understanding of the world. His family with 7 brothers and sisters form a very tight and connected network who believe in his capabilities. His portrait delivers an exciting combination of strengths and complex barriers.
Ethan is one of 18 portraits. In our research we analyzed all 18. We read the stories of the youngsters extensively. We have looked for common lines in the very diverse portraits. We have clustered these in the following themes: identit(y)(ies), communication and support of interactions, problems in health, opportunities for education, leisure time, participation in a family, support needs and future prospects.
Participation and communication are crucial for youngsters with serious communicative difficulties. The children are blurring boundaries that are set for them through the school system and their label(s). We recognise what Julie Allan (1999) describes: “Transgression allows individuals to peer over the edge of their limits, but also the impossibility of removing them. (…) They need not to reject their gendered or disabled identities, but can choose to vary the way in which they repeat their performances, cultivating an identity which is always in process.” Focussing on ‘becoming’ is more essential than on ‘being’.
Allen, J. (1999). Actively seeking inclusion. Pupils with special needs in mainstream schools. Falmer Press: London.
Lawrence-Lightfoot, S., & Davis, J.H. (1997). The art and science of portraiture. San Francisco: Jossey-Bass.