I first learned the term self-determination in the mid-nineties when I began working in the disability advocacy community. At the time it was considered revolutionary in disability services, asking people with disabilities how they wanted support provided and teaching people their rights. States could apply for grants that provided funds to help them figure out how to put people with disabilities behind the wheel and recreate a service delivery system where the individual was in charge, not the system. Then, about 15 years ago, self-determination in services that support people with disabilities turned into “self-direction” wherein people are provided the funding directly for the needed services and can hire staff and fully direct their life. This is not as widespread as one would hope, as systems change slowly and we still have a long way to go, but there are many glimmers of independence that were not there 30 years ago.
I’m currently caring for my kids and a parent, a “sandwich generation caregiver”, so I’ve been thinking a lot about this lately. For instance, as my kids have grown up my parenting has changed based on what I’ve learned about the value of self-determination. I distinctly remember intentionally changing my parenting to allow for their self-direction; in mid-elementary school I stopped giving so many directions on what to do and how to do it. That was a challenge after many years of habitually providing verbal cues in an effort to get regular tasks accomplished. By integrating the concepts of self-direction into my relationship with my kids, I believe they are more independent and take more responsibility for themselves.
On the other side of the sandwich, I’ve been supporting my mom through a medical event. This has brought to light again the desire we all have to maintain self-direction in our lives. When visiting, I’ve received instructions on how to do things that, as a nearly 50-year-old person, I absolutely know how to do. One of the first times this happened I thought to myself, “I know how to do this. You don’t need to tell me what to do.” Since it was my mom giving the instructions, I felt transported to being a child again. Then I realized this is self-direction. She is unable to do this for herself today, but her need for self-direction comes through in her insistence in having it done the way she would do it.
The concepts of self-determination and self-direction are important in fostering independence and empowerment for individuals across generations and abilities. Whether it is within the disability advocacy community or within our own families, recognizing and respecting the inherent desire for and importance of self-direction is crucial. By valuing and promoting these principles, we create a future where everyone is empowered to lead a life where they fully exercise their autonomy.