People with developmental disabilities are too often left at the mercy of other people. Doctors, support staff, social workers, family members, and others frequently make important decisions about people with disabilities without taking those people’s wishes into account. For the last few decades, though, people with disabilities have taken back control of their lives in major ways. The self-determination movement has been instrumental in this shift.

Self-determination: What is it?  

Self-determination is the seemingly simple idea that with people with disabilities should have power to make their own decisions. Instead of allowing medical professional, social workers, and family members control the day to day decisions of a person’s life, self-determination advocates argue that people with disabilities can and should make their own choices.


According to the Center for Excellence in Disabilities, self-determination is not necessarily synonymous with independence, although the two concepts have plenty of crossover. Self-determination is “about taking action in your life to get the things you want and need.” A person who needs help from staff to accomplish a goal, for instance, displays self-determination as along as they were the person who established that goal. Self-determination, then, is accessible to everyone with a disability, no matter how much assistance they may need.


For adults with developmental disabilities, especially those living in group homes, this path to self-development can be fraught with obstacles.


Let people run their own lives. Sounds simple enough and hard to disagree with, but in reality, self-determination runs up against some stubborn barriers. Why? Sometimes, it’s because people’s personal decisions conflict with expert advice. Smoking, drinking, and unhealthy diets are frequent points of contention. Guardians and support staff often feel it’s their duty to prevent people in their care from making such decisions. But if the people in their care are adults, don’t those people have the right to make those choices?


Moreover, advocates argue, not all questions of self-determination are a matter of freedom of choice versus responsible behavior. Many people with disabilities make the point that their wills are stifled not by well-wishers, but by support staff members who are simply too lazy or too controlling to help their clients reach their goals. Sure, these advocates concede, stopping someone from choosing to drink excessively is reasonable enough, but what about someone who wants to take a walk around the lake and is thwarted by a support staff member who wants to sit on the couch watching college football, or who overestimates the dangers of the weather? Framing the issue as simply a question of “to what degree should adults with disabilities be allowed to make bad choices?” is reductive, condescending, and a cop-out.


The movement toward self-determination, in which people with disabilities set their own goals, and achieve those goals on their own terms, has been successful. In the last few years, we’ve seen comedians, actors, and athletes with developmental disabilities take massive strides towards running their own lives. A Finnish punk rock band made up of people with disabilities even made it to the 2015 Eurovision semi-finals. Not bad. These sorts of accomplishments would have been unthinkable to the community only a few decades ago, before people with developmental disabilities began standing up and demanding the right to run their own lives.  


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