In the latest Journal of Intellectual and Developmental Disabilities (V49, no.5, October 11, 2011) there is a research article that discusses interviews with people with disabilities about their perception of what self-determination needs to them. The first section described how they defined self-determination. The themes that came out were speaking out (and often), and being in charge, pretty universal themes. Next they described staff actions that either impede or support their actions. I find these impediments very disturbing as we have advocated for years that these staff actions are tantamount to abuse, yet here they are.
1) Boss me around – usurping decision making and control
2) Hold my money – controlling personal spending
3) I can’t talk to them – being unapproachable or inaccessible
4) Made intentions known with no changes – failing to follow through
5) Expressing desires but being told they were wrong – obstructing and coercing
Pretty disturbing, however, to be fair there are staff actions that were perceived to support their intentions for self-determination, these being;
1) Point me in the right direction – expanding options and experiences
2) Go to someone higher up – supporting access to people of authority
3) Feel comfortable with them – being approachable and accessible
4) We can sit and sort out choices – listening without judgment
5) They will help me to do what I want – providing support for follow through
Congratulations to those who work and live in supporting, and accessible environments. It is imperative to move our culture out of the control and into supports.