Real Life Story

By Josiah Barber
Student, Portland State University

Prior to my involvement with maternal child health programs in Oregon, my home state, I had never heard of life course theory. When I learned about the life course theory, though, it made perfect sense, and I can see threads of it appearing in my social work education. After spending some time working with youth with disabilities, I believe life course is a call to professionals to look beyond the medical model and diagnosis. Seek to understand what is happening in other aspects a young person’s life.

As a young adult with a disability, life course can be seen in several parts of my journey to adulthood. One piece of life course theory is timing, and how that dictates what role we play in life. From a young age, my parents encouraged me to see my disability as a natural part of my life, and taught me to seek accommodations where necessary to accomplish my goals. As I grew older, they encouraged me to take a more active role in planning my life, particularly relating to education and taking charge of my health care. This meant the role I played changed as time went on and I acquired more independence. Taking responsibility for health care became imperative as a young adult, as I undertook the task of moving away from my parents. All throughout my childhood, my parents had equipped me with skills, such as self-advocacy, so that I could collaborate with health care providers to get my needs addressed. Acquiring these skills provided me with a sense of agency, another part of life course theory.

Working with youth with special health care needs, I meet numerous families and young adults that have not considered how their health care needs may change as they age. Nor have they contemplated the transition to adult-oriented health care. The thought of having to take responsibility for their own care overwhelms them. Since life course also focuses on the timing of events, it is important to note that young adults will eventually come to an age – a time – where health care transition will be necessary. I wish that I had a better understanding of this during my own transition, perhaps I would not have delayed it so long. So, when talking to youths and parents, I emphasize the importance of planning for that time and help them to think about what skills they may need to develop in order to gain agency in managing their care.

As a person with a disability, I have had many interactions with the health care system throughout my life. From a young age, I showed an interest in working in health care. I never dreamed I would eventually be pursuing a career that would allow me to be a leader in supporting young adults with disabilities in their transition to adulthood. My experience being the recipient of numerous health and educational services throughout my life has shaped my vision of how I want to provide services – helping to empower people with disabilities to live healthy, self-determined lives. Coming full-circle, from a recipient to a provider of services, makes me think of the emphasis life course puts on the past shaping the future.

Life course seems to be applicable in many ways working with youth with disabilities, from helping them gain a sense of agency to exploring their social and familial contexts for a better understanding of events that impact their lives. This is why it is important for health care professionals to look beyond just a disease process and have a greater sense of the strengths and challenges in a young person’s life.