There are volumes of literature about the transition to adult life and self-determination for people with disabilities. An article entitled “Advice from Adults with Physical Disabilities on Fostering Self-Determination during the School Years” sparked some reflections about my own upbringing.
The definition of self-determination that resonated the most for me was from the Teaching Exceptional Children article:
“Self Determination is a combination of skills, knowledge, and beliefs that enable a person to engage in goal-directed, self-regulated, autonomous behavior“. 1
Putting aside the academic language and jargon, what does self-determined and goal-directed really mean? Recognizing various differences in culture and families, I think it means learning from modeled behavior regardless of who teaches it. It means learning and modeling the ethics, conduct, skills, and general behaviors to function and positively interact with family members, peers, friends, educators, and others we meet in school and employment environments, and in the larger community.
Whether I have a disability or not, I had to learn what was acceptable to say or do in a family setting, a school-setting, and a professional setting. The Wiley children learned courtesies of greeting an adult by saying “Hello Mr. or Ms. Smith.” We had structured routines at home.
Specific behaviors were expected at different times. For example, at dinner time you did not talk with your mouth full. During homework time, homework was done before the television was turned on. My parents built the foundations of our future by creating structure, teaching limits, and fostering a ‘can versus can’t’ philosophy. That can versus can’t philosophy became critically important in the context of my disability.
Up until the age of 6 or 7, I would frequently ask one of my brothers to go and bring me my canes, backpack, a drink, a snack, or a toy. I was perfectly capable of walking to get the desired items. Either one of my siblings would initially go and get whatever I requested. For a short time I was lulled into laziness and a false intoxicating sense of power. I was the older sister. I enjoyed directing or ordering my brothers to do as I wished.
My brothers initially would do as I asked. It was faster and easier for one of the boys to go and get whatever I wanted. The “go and fetch” routine would soon be broken with a retort of, “Go and get what you want yourself.” My brothers were not paid butlers or servants. My family smartly broke a bad habit that was forming for me.
I was not allowed to use my walking issues for a selfish end. Just because I walked with canes or crutches did not mean I was entitled to special privileges. I was capable of completing and was expected to complete 99 percent of the directives and tasks that were outlined within the Wiley household.
I quickly learned that no one was going to complete tasks for me just because I walked with walking aids. I was expected to do my homework, unload the dishwasher, clean the bathroom, and make my own bed. My parents set the foundations and expectation of self-sufficiency. If I did not perform an expected task, I lost privileges.
There were other routines established within the Wiley household that instilled and supported self-management skills. We learned the value of education and money early. For example, half of our weekly allowance was put into a savings account for future college expenses. It was ingrained that the Wiley children would pursue some sort of college degree.
Expectations regarding education, development of vocational skills, and general self-management skills shaped who I would become. Disability would not be an excuse for why I would not accomplish a task or a goal.
The foundations of self-determination really begin when a positive “can do” philosophy is cultivated and modeled. My parents modeled positive behavior and expected certain behavior for all of their children. Whether a person is a parent, caregiver, or teacher, instilling structure, limits, and guiding choice is what self-determined and goal directed is really about.
Self Determination Resources:
Developed by the Virginia Department of Education, the I am Determined website provides videos, activities, checklists,
and assessments focused on providing self-determination skills and training to youth.
www.iamdetermined.org
The Pennsylvania Youth Leadership Network (PYLN) developed a Secondary Transition Toolkit. The toolkit was created by youth with disabilities to help youth in their transition into the adult world. The toolkit includes personal stories, information, and activities to help youth in transition take charge of their lives.
http://pyln.org/
- Angell, Maureen E.; Stoner, Julia B.; Fulk, Barbara M. (January-February 2010). “Advice From Adults With Physical Disabilities on Fostering Self-Determination During the School Years.” TEACHING Exceptional Children, v42 n3 p64-75.