I live an ordinary life. Like my neighbors in suburbia, I am a parent, live in a nice home, shop at the local grocery store, buy gas for my car at the self-serve station, complain about the school system, and bemoan escalating tax bills. Again, like others, I am active in my son’s school and, much to my chagrin, accept that a majority of my social life revolves around activities such as Boy Scouts, hockey, and archery.
Despite the ordinary life I lead, I stick out like a sore thumb. When I enter a room or meeting, people instantly know who I am. Why am I so different? Well, for one thing I have long hair I tie into a pony tail. While my long hair is out of the norm in the New York Metropolitan area, what truly separates me from every other parent is my disability. I have been a paraplegic since I was 18 years old. My status as a single parent with a disability is unique and generates odd social interactions. My presence alone can spark social exchanges that range from blatant bigotry to discomfort to slapstick comedy. It is during these social exchanges that I realize I picked the perfect occupation-anthropology.
What is anthropology and why is it an ideal occupation? More generally, why will Orbit publish a series of columns written by an anthropologist about parenting with a disability? Anthropology is important because it enables people to understand the meaning and social significance of a given encounter within a culture. For people with disabilities anthropology is particularly empowering. Robert Murphy, wrote that his book, The Body Silent, did something no one else had ever done for people with disabilities: “It told them that the avoidances and even outright hostility so often manifested toward them by the nondisabled are not the natural products of their own physical deficits but, rather, expressions of deficiencies of perspective and character of those who behave-in short, it’s their problem, not ours.” This was not only a revelation to me but a call to arms-Murphy, one of my professors at Columbia University, told me I had the moral obligation to write about disability because anthropology could make a difference in my life and others’.
Most parents will tell you raising a child is the most challenging and rewarding aspect of their lives-a sentiment I share. When you consider the added element of having a disability, the job of parenting becomes more complex. This added complexity has nothing to do with the myriad of logistical problems—such as: how do you change a diaper, get in and out of the car with a child safety seat, and deal with teachers?-but, rather, the preconceived belief that parents are not supposed to have a disability. Since my son was born my parenting skills and my very ability to parent, have been questioned by many people ranging from physicians to strangers to friends and even family.
In future columns I will highlight some of my own experiences and discuss issues that all parents with disabilities will encounter. Topics include the following: how do couples, one or both of whom have a disability such as spinal cord injury, go about conceiving? What should a parent with a disability look for in a pediatrician and how can they avoid or deal directly with prejudice? How can parents with disabilities have an active role in the social activities of their children? How do parents with disabilities deal with school systems that are too often ill equipped or even hostile toward parents with disabilities who want to have a say in their child’s education? How do parents with disabilities travel with their children and deal with the common hassles associated with mass transportation?
The author and his son Tom went fishing together in Wyoming. Parents with SCI face unique challenges, but there are rewards, as well.
My experiences as a parent with a disability have been both enlightening and aggravating. Having a disability has created many social barriers, given me a stigmatized identity in the eyes of some and been an advantage in certain social situations. One thing I am certain of is that social anonymity is impossible.
I sincerely hope that as I begin to relate my experiences and observations as a parent with a disability that others will not think they are alone. I mentioned this to my son once when he was very young and asked if he ever felt bad that there were no other parents with disabilities. I could see he took this question to heart and, quoting a line from Sesame Street, said to me, “It’s not easy being green.”
I could not have said it better myself.
William J. Peace has a PhD in Anthropology from Columbia University. He is the author of Leslie A. White: Evolution and Revolution in Anthropology.
