The terms self-advocacy and self-determination: Why are each of these important in the lives of individuals with disabilities?
1) Self-Determination is about being able to have choice and control. It is being able to make decisions about yourself at this moment and in the future about what you want to do here and now and where you want to go in your life in general without having someone else direct or determine your choices or outcomes.
2) Self-Advocacy also has to do with having choices and control, but also being able to speak up and say this is what I want and need in this situation, at this present time, as well as in the future.
Both Self-Determination and Self-Advocacy are important for people with disabilities, because often people already decide for someone who has a disability that they need others to make decisions for them and that the person is unable to do many things because they have a disability. Having a disability can often mean that an individual as to overcome obstacles that do not exist for people who do not have disabilities. Very often barriers are created or simply exist for people with disabilities that do not exist for people who do not have disabilities.
We are told in this class and other places that people with disabilities are people first and second they have a disability. This is important when thinking in terms of the language we use, but it is also important in terms of interactions with students and individuals with disabilities in general.
As a teacher it is important to support all students and especially students with disabilities in self-determination and self-advocacy.
Elements of self-determination are:
1) Choice making
2) Decision making
3) Problem solving
4) Goal setting and attainment
5) Self-observation skills
6) Self-evaluation skills
8) Internal locus of control
9) Positive attributions of efficacy and outcome expectancy
All of these things are things that many people take for granted as simply innate and important parts of the core of a whole and centered self. Yet, often well meaning yet misguided people tend to believe that these are not part of the core self of individuals who have disabilities. We (as I have also been guilty of this) assume that individuals with disabilities cannot have or do not want or need to have these elements of self-determination as part of their personality and identity. We view them as almost infantile in their needs, wants, and desires. Individuals with disabilities are viewed as needing to be taken care of in every aspect of their lives and needing to have decisions made for them, as they are incapable of making them on their own. It is unlikely that most people who view individuals with disabilities this way probably are not even consciously aware that they do it and do not have any malicious intent. However, their actions belie their preconceived notions about what people who have disabilities are capable of, what they want, and what they need. Unfortunately, these actions although well intended often serve to undermine feelings of self-determination and will to self-advocate, because the person, their actions, or both have become yet another barrier or obstacle to overcome. This of course can do the opposite as well and make someone more determined to prove to themselves and everyone else that they are capable and able to be self-determined and will make them self-advocate even more.
However, the ideal would be to view as well as talk about people who have disabilities as people first and see their disability for what it is, which is just a small part of who that person is as whole. That is where we begin to support success, independence, self-determination, and self-advocacy. Whether consciously or unconsciously self-determination and self-advocacy are what all people are striving for. From the time a child can walk, probably even before then, they are pulling away from their parents and rushing madly towards independence. As parents it is our job to continuously let go over and over and over. It is the same for children who have a disability. They have that same drive for freedom and desire for independence and need just as much for it to be supported, so that they can be a fully realized individual.
I had my first experience with a person who had a disability and expressed this idea of being a person first, being self-determined, and self-advocating when I was ten. This woman was a friend of my mothers from church and I want to say that she had gone blind from an illness, but I cannot remember for sure. Anyway, I had asked her a question about helping her and people offering to help her. I am sure it was some kind of inappropriate question as I was full of those when I was ten. I don’t really recall much more than her response to my question, which was, “I don’t want help from other people. I don’t want people to ask me if I need help. If I need help I will ask for it. I am not just blind. I am a person just like anybody else and I happen to be blind.” I remember thinking that that didn’t make any sense at all, because how was she going to cross the street or make her own dinner without someone there to help her? I really hope I had sense enough to not say it, but I am not sure. The point is I am glad that has stayed with me twenty years later. I am glad that now I understand what she meant, that it makes sense to me, and that often what is needed it to step aside and let someone be a human being.
The importance overall of self-determination and self-advocacy from the point of view of working with and teaching students who have disabilities is that regardless of how well meaning it is when we take away a persons opportunity to make choices, have self control, advocate for themselves, and be self-determined we take away their humanity. Not in an overall sense is one experience or one person’s well meaning mistake going to take away a persons humanity permanently, but in that moment it does reduce them to being less than human. For a child, even one experience like that can have a lasting negative effect. So, it is important to maximize independence, support independence and success and not take away from students the opportunity to have a voice, make choices, and have control.