By William Peace, PhD
 |
In 2005, I wrote a series of columns for this magazine about parenthood and disability. Each column had a specific theme that addressed issues I have encountered as a single father with a disability raising my son. (If you’re interested, you can read them on-line at by clicking on “Parenting” in the Categories section of the navigation bar.)
I took an unexpected leave of absence from column-writing when another sort of parenting issue arose for me. My father died October 9, 2005. His death was preceded by an agonizingly slow form of dementia that was frightening to him and heart-breaking for our family. My own broken heart needed time to heal before it would permit me to write anything personal.
A year has passed since my father’s death. Although I could not write about parenting last year, the months between my father’s stroke and his death taught me a number of valuable lessons about being a parent. First, I learned it was a tremendous advantage to be disabled. My familiarity with the medical system enabled me to navigate the Byzantine world associated with the care of the elderly. I was at ease with doctors, nurses, and the physical, occupational, and speech therapists that cared for my father. I knew the prerequisite medical jargon and quickly learned about the physical and cognitive problems of stroke victims. I was also familiar with ancillary service providers such as medical supply companies that were supposed to provide needed products such as a wheelchair and shower chair. Along with my sister and mother we became the primary advocates for my father. United in spirit, our entire family was dedicated to helping my father maintain not only his dignity, but the highest quality of life.
The second lesson I learned about parenting was that I was given a unique opportunity: my father’s mental and physical decline gave me the chance to do something I was always willing and ready to do—care for him when he could not adequately care for himself. While I hoped this would never happen, when it did, it made me realize the emotional turmoil he faced when I was seriously ill as a child with profound neurological deficits. Nothing can be worse than seeing a child or parent suffer-to see life ebb from them. My mother and father took ideal care of me at the worst of times and were ideal parents. I now realize that I was given the chance to thank my father in a tangible way for what he did so long ago for me. My concrete contribution was small and while I could not physically care for him, I could be there when needed. Accordingly, I made sure I was in his room when he woke up from a nap after lunch. I knew he was profoundly confused when he woke up and I will forever remember the look of utter relief on his face when he saw me. It was this and a myriad of other, seemingly inconsequential, things that, in retrospect, gave me tremendous satisfaction. My father’s lack of independence made me think not just of his struggles but how cyclical life is and how disability is central to the human condition at the beginning and end of life.
The third lesson I learned is that getting old is not just about the aging process but social isolation—a central problem associated with disability. There is something inherently wrong with American society because the elderly are shunted aside and little value placed on their life. I was disgusted by doctors who were clearly reluctant to treat the elderly because they were afraid that if something went wrong they would be sued. Critically important decisions were not based on what was best for a given individual but if it was covered by health insurance. These problems are all too familiar to disabled people who face a daily struggle against social invisibility and a medical system more concerned with money than compassionate care. Being well-schooled in the injustices heaped upon disabled people empowered me as an advocate for my father. I can rest easy knowing that I did the best I could under the circumstance and, in doing so, I hope I taught my son a lesson for the future.
William J. Peace has a PhD in Anthropology from Columbia University. He is the author of Leslie A. White: Evolution and Revolution in Anthropology.
