Self Determination: A Lifelong Practice

It has been said that if you are not allowed to get up in the middle of the night and microwave a burrito, there’s a good chance you’re living in an institution. The “burrito test,” as it’s often called, is about more than just a midnight snack. It’s about the right to self-determination. At the organizational level, “self-determination” is a position statement or a keyword. At the individual level, self-determination is a component of a good life. It’s the right to get some ice cream because you feel like it. It’s leaving uncomfortable situations when you need to. It’s staying up an extra hour because the first few minutes of the show that came on after the one you were watching piqued your interest.

Unfortunately, “self-determination” is a buzzword that often focuses only on structured decisions, such as taking an individual’s interests into account in prevocational activities. Self-determination in the realm of structured decisions is certainly important in its own right! But there is a sizable gap between having input at predetermined intervals and living a self-determined life. For a more detailed example of the difference, see this poem by Elaine Popovich.

Neurodivergent people and others with disabilities are often denied age-related rites of passage enjoyed by their same-age peers. Steadily, this denial chips away at present and future self-determination. Part of normal human development is exploring different roles and identities, pushing boundaries, and taking risks. These stages may appear disarming in a world where true and full self-determination for people with disabilities – and particularly young people with disabilities – is still so rare. But this alarm is often based in bias rather than in reality. In truth, the dignity and growth found in these activities pave the way for future instances of self-determination.

Self-determination is often messy. Adults often want to guard against that messiness. One of the most crucial parts of early self-determination is the level of support that is often inherent in youth. Exploring the community, trying (and quitting!) different activities, and having privacy both in and out of the home all have inherent risks and are all very reasonable examples of self-determination. The childhood and young adult years are an excellent time to analyze potential barriers and risks in these experiences and develop a support system to support safe navigation. At times, these supports may be apparent to others. Other times, particularly when the supports are family-based, they may be less apparent. For instance, many parents of children with and without disabilities develop systems for their child(ren) to “check in” with them or have predetermined agreements with their child(ren) about locations, activities, and people that are considered “safe” and those that are not. Like all things human, self-determination is rich and messy and complex. Above all, self-determination is a right that we have a responsibility to uphold.