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First Person

by 

Shani Barzilay

A video-based tool for enhancing the self-expression of people on the autistic spectrum and their involvement in decision-making.

For many of us, maturation is a process of reflection and on-going self-definition. How is it experienced by young people with disabilities who require significant support in their daily lives?

This project started with the “fall into the abyss”. This is how many people refer to the day after graduating from special education at the age of 21. IN Israel and worldwide, the transition to adult life of people with severe disabilities as a crisis that evokes existential anxiety. 

For most of us, the transition to adult life is the exact opposite of a fall – it is the beginning of a journey. The process of maturation most of us experience is one that we lead, with active reflection and self-definition, in an attempt to better ourselves and improve the quality of our lives. 

The project focuses on young people on the autistic spectrum who require significant support. Despite their communication difficulties, they are intelligent and sensitive, with their own way of expressing their wishes. Since they require significant support, they are accompanied by an entire envelope of supporters – family members, educational staff, and subsequently welfare services and protected employment, housing and leisure settings. Thus, they grow up in a process that is shared with all those who support them in their lives. 

However, the way this shared process unfolds today is far from meeting their needs. This is not only a problem of resources, but also of attention and empathy by those entrusted with helping them, and their ability to share the information about them in order to promote the same objectives. For example, youngsters with motor difficulties arrive at occupational settings where they are required to perform craftworks that reproduce their difficulties, or intelligent individuals who spend their days working on children’s sticker books. The services provided are tailored to the youngsters’ disabilities, rather than to their desires and interests as individuals. 

The project offers a solution in the form of a video creation tool for the youngsters and those supporting them. The video documentation and the conversation about it enable them to acknowledge their desires and needs together, and share them with others – particularly those who have not known them before. Video documentation is richer than textual reports written without the youngsters’ involvement, and enables to present them in the context of their lives – where they display their desires and strengths, and not only their disabilities. The video serves as an anchor for a discussion, enabling the youngsters to navigate their lives, and their supporters to accompany them.

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Shani Barzilay

Multidisciplinary designer. Senior Business design consultant in EY. Previously, news editor in Kan and Calcalist. Has a BA from the Hebrew University’s PEP (Philosophy-Economics-Political Science) program. 

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