Frontline Initiative Self-Determination

As someone who has many medical needs, but many dreams as well, I’d like to share with you what self-determination means to me, and how my situation demonstrates what a Direct Support Professional (DSP) can do to promote the self-determination of the people they support. For me, self-determination is expressed primarily in two ways: 1) speaking up for myself, and 2) learning more about my medical needs and how to cope with them on a daily basis. First let me share a little background about myself.

I have Prader-Willi Syndrome, diabetes and a developmental disability. Prader-Willi Syndrome is an eating disorder that was described to me as my brain telling me to eat constantly, but never telling me that I feel full. Every day I feel the struggles of having to watch what I eat and exercising every day. I have to use will power to help me control my urges. I feel better when I stick to my diet, and when my staff help me with these ongoing struggles by encouraging me to stick with it. Having diabetes, I also have to check my blood sugar four times a day and, again, I watch my diet carefully. My staff provide supports throughout all of this, but sometimes their eagerness to stick with the program has resulted not only in a clash of wills, but even a risk to my health.

For instance, one time I told staff that I didn’t have enough to eat for breakfast, but she didn’t listen. She told me she couldn’t do anything about it and that I needed to stick with my diet. I left for work. I started feeling light headed and weak, my legs like jelly. I had to go to the staff at work to get something to raise my blood-sugar level. When I got home I was able to tell the supervisor what happened and she said she would take care of it. It has never happened again. Staff now support me by listening to me more carefully and responding to my needs. When that happens, I feel respected, self-confident and self-reliant. My situation is delicately balanced between what I want and what I need. DSPs need to be very sensitive to everything I say, whether it be something I want to do for fun, or how much I want for breakfast, and they need to work with me to find a solution.

I feel that, to be most effective, DSPs must not only be aware of my needs and wants but also their own. In the above situation about breakfast, the staff seemed callous, rigid, and almost oblivious to me. In this case and in many like it, the DSP’s self-understanding may have affected how she understood and sympathized with others. Many people are rigid with others in areas where they themselves do not feel they are doing their best. Perhaps if she understood her own needs, she may have understood mine better and responded more appropriately.

 I recently participated on a consumer empowerment panel where these types of issues were addressed. The panel shared a set of questions with DSPs which may help them during times when they struggle with consideration of a person’s self-determination. These were the questions a DSP might want to ask him or herself —

• Are you struggling as a staff person to understand someone’s choices? If so, ask yourself why you are having difficulty accepting that she is making the choices she is according to her life experience and values, not according to yours.
• Do you find yourself feeling angry and frustrated with the person with a disability? Try to identify what it is about the individual’s behavior that threatens you. (Remember that anger can interfere with your role as a support person.)
• With which person do you find it difficult to be compassionate? Why?

It is the challenge of the DSP to question and examine him or herself and ask how this self-understanding can affect the way they support me as well as affect my self-determination. As a person with various disabilities, I understand how a DSP may want to “protect” me, but I want to be in charge of my life.