Self-DeterminationWhy This Is Important
Prepared by Liz Obermeyer, previous manager of this department. Liz is a nationally known and long time leader of the self-advocacy movement among people with disabilities throughout the United States. She currently is a staff member of The Council on Quality and Leadership.
"As a person with a developmental disability, I was told for many years what, when or how to do things. Sometimes I wasn't even given a choice. Parents and professionals didn't think anything of it, and people with developmental disabilities didn't know any better because that's how life was. They made all kinds of choices for us, ranging from where to live to as simple as what to wear.
That is until my friends and I learned about a very simple concept called Self-Determination. Self-determination means people with disabilities should control our lives just like anyone else does. That means making simple choices like what to wear, or eat, and more complicated decisions about controlling our own resources.
Parents and professionals usually say that people shouldn't control the decisions in their lives because we can't make responsible and good choices. I am sure not every decision or choice that my parents or anyone else made turned out to be a good or a responsible choice. I also think people can learn from making mistakes if they happen.
There are four main points used in the United States to define Self-determination. They are freedom, authority, support and responsibility. I will describe how these principles affect my life and my friend's lives
Freedom: In my opinion, this is the most important principle because for a long time people with disabilities were not allowed to live a free life, even though our country is based on this fundamental right. Instead, people lived in institutions or other very controlled environments. For the past couple of years, I live in a world where I make decisions for myself. I have the freedom to come and go wherever I want, and to decide if I want to tell someone where I am going. I refuse to go back to a world where I am controlled.
Authority: In the dictionary, it says the word "authority" means something like "the power to influence a command or thought." To me it means I have the final say over things. My friends and I struggle everyday to get authority, because some people without disabilities don't see us as able to have authority in our own lives.
Support: This is my favorite principle because I think everyone, whether or not they have a disability, needs some kind of support. When I no longer received paid support, I formed a circle of support.
I like calling it a circle of friends. That is because I like to get support from my friends, not from people are supporting me because they have to. I think if people don't get support, whether they have a disability or not, they won't have happy and productive lives.
My circle is a place where I give support just as much as I receive it. I sometimes worry that people with disabilities take advantage of people who support them. My friend Nancy Ward once said that support should "go both ways"
Responsibility: This principle is also one of the most important principles of the Self-determination movement. A lot of people without disabilities complain that people don't want to take responsibility for their own life. They say that people just want the rights and privileges that come when you live or work in the community. However when it comes to taking about responsibilities, that's another story- For example if you want to live in the community, it takes money, and how do you do that? You earn the money by working for it.
Last year, we as self-advocates added a fifth principle, self-advocacy. We believe that if it weren’t for self-advocacy, we wouldn't have self-determination. I worry sometimes that professionals want people to gain self-determination so bad, they forget to include self-advocates in the process. The Robert Wood Johnson Foundation has now agreed to promote this principle."