Self-determination in a nutshell

Self-determination has been defined as “acting as the primary causal agent in one’s life and making choices and decisions regarding one’s quality of life, free from undue external influence or interference” (Wehmeyer, 1992).

Many individuals with severe disabilities have little say in basic life events. They don’t get to choose where and who they stay with or what and where they eat. A majority of them are unemployed and poor. They seldom participate in leisure activities. They have few or no friends. They are not part of any social networks. A life of no choices, no friends, no financial stability, no job satisfaction, no fun, and no quality of life. If you think about it, this is one very sad life to live.

And that’s where self-determination comes in. Self-determination is a contemporary best practice in instruction of individuals with severe disabilities because it emphasizes teaching these individuals skills to be self-determined. It involves teaching choice-making, decision-making, and problem-solving skills. It involves supporting the individuals to be as independent as they can be. It involves providing supports so that they can initiate and complete a task without relying on others to do it for them. It doesn’t mean having them do everything on their own, it just means providing them the skills and supports to experience a satisfactory life.

I guess an analogy would be a baby who is learning to walk. A wise parent would hold out a hand and provide just enough support so that the baby can do baby-steps across the room to where s/he wants to go. An unwise parent would carry the baby everywhere and baby does not learn to walk and does not get to go where s/he wants to go. An uncaring parent would leave the baby on the floor. An individual with severe disabilities is like a baby who will never walk on their own.

So like everything else in this world, self-determination does not take place independent of the community. Unfortunately, it is easy to ignore those who are weak.

Inclusion in a nutshell

Inclusion is a term used to describe the ideology that each child, to the maximum extent appropriate, should be educated in the school and classroom he or she would otherwise attend. It involves bringing support services to the child (rather than moving the child to the services) and requires only that the child will benefit from being in the class (rather than having to keep up with the other students)(Council of Exceptional Children)

Inclusion is actually not a contemporary practice. For years and years, advocates for children with disabilities have been pushing for inclusion. Although the Individuals with Disabilities Education Act does not specifically say inclusion, it says that children with disabilities should be educated in the least restrictive environment (LRE). For some kids, LRE would mean the general education classroom with normal kids. And for other kids, LRE might mean spending their school day in a combination of general education and special education classrooms. And for some other kids, LRE might mean the whole day in special education classrooms.

That sounds fine and dandy. Unfortunately, even in the “progressive” USA, more and more kids are not being included in general education classrooms. Many kids with disabilities spend their whole day in special education classroom with no social contact with normal kids. I’ve observed emotional support classroom for children with behavior problems, and these kids even spend their lunch-time and recess away from normal kids. This has come to a point where a group of parents in Pennsylvania has filed a class action lawsuit against the Dept of Education for violating the rights of children with disabilities to LRE. So, although inclusion is not new, it has not become a reality for many children with disabilities.

Inclusion is also an idealism that I’ll have to leave behind when I return to Malaysia.