“One can talk good and shower down roses, but it’s the receiver who has to walk through the thorns, and all its false expectations” – Anthony Liccione
I just read an article by a Chris Lenart describing the involvement of fathers in the lives of their disabled child. I don’t know Chris personally and there is a 20 year difference (basically one generation) between us. That is important to note because it does make a difference on perception and parental involvement. I read his article through the lens of my own background. Initially I was a little pissed off until I put it into a generational perspective.
I wasn’t upset with the focus of the article but my hackles do go up when I perceive more emphasis on “dis” than “ability”. I didn’t grow up as a “disabled child” but I did grow up as a child with a disability. My polio created some physical challenges but my disability was created by those around me, society. I live by the philosophy that “my disability doesn’t define me, I define my disability”. I have a life time of anecdotal evidence showing societies attitude defines disability.
My disability makes up about 20% of who I am but impacts a 100% of a persons initial exposure to me. The 80% defined by my ability means I have to work a little harder to get that first impression a workable relationship. How I present myself will be based on how well I am able to demonstrate my abilities to move past the “dis”.
I grew up in a time where institutional living was the norm. Polio kids were hospitalize (some call it institutional) for numerous reasons. Schools nor communities were accessible. Medicine was no where near where it is today and seldom was the term “healthcare” even used. There were few, if any, family support programs in the early baby-boomer days with surgical procedures being the primary treatment of the time. This made institutional living easier for everyone. Hospitals became households and your family were the other polio kids. Growing up in that environment the emphasis was always on ability and we were encouraged to be self-sufficient individuals.
In today’s society there is a stigma attached to the “institutional” approach (which I can understand) however it allowed me a lot of opportunity in a generation where I would have otherwise missed out on so much. Things like basic education, treatment or inclusive involvement in my community. We didn’t all have “The Secret Garden” resources so the hospital became a community.
For the majority of my childhood my parents were nurses and the hospital was my home. This was a generation when parents had little involvement in the medical aspects of their child’s life. Parents had limited visitation opportunities, Wednesday after school for one hour (3:30 to 4:30pm) and again on Sunday for an 1.5 hours, siblings even less. Between school, surgeries, various therapies (physio, OT, etc), activities like Scouts and Guides, arts and crafts, Friday movie nights, Saturday night teen dances, etc the hospital offered all of us the opportunity for community involvement that wasn’t really available in the mainstream community.
That was a normal life to me. The traditional foundations of the basic developmental milestones and cognitive advancements that happened in any child’s life were established in that environment. The concept of disability wasn’t there, in our eyes we were all the same. The focus was on out ability, not a disability. Continue reading