by William J. Peace
Why do most cultures ostracize people who do not fit within social norms? According to Leslie Fiedler, who penned the term, “The Tyranny of the Normal,” society is afraid of those who are different. The “normal” people pressure those considered “abnormal” and force them to change their appearance, fix whatever is broken, or remain out of sight because their presence is too upsetting.
I encounter this social dynamic on a regular basis as a parent and individual with a disability. As my son has gotten older, the social barriers have not lessened but, rather become more complex. In a given week I can be applauded by total strangers for mundane actions like entering and exiting my car or directly asked if my son was born before or after I was disabled (the assumption is that disabled people cannot be parents). Such comments are aggravating, rude, and socially unacceptable. I would like to believe the comments are based on ignorance, unfamiliarity with disability, and lack of education, but in searching out a pediatrician for my son I was shocked when medical professionals exhibited similar culturally biased beliefs.
If education leads to enlightenment and a lack of prejudice, doctors should be the least prejudiced members of society. Unfortunately I learned many doctors were just as quick to question the competence of a person with disabilities. This makes the search for a pediatrician problematic for parents with disabilities.
Locating a pediatrician-or at least one that did not frown upon my existence and wonder why their office had to be accessible-was not easy for me. In finding a suitable pediatrician, there are basic requirements not subject to discussion for any parent: The pediatrician’s office must be a clean, pleasant, friendly, and child-oriented place to visit. For a parent with a disability, the office must also be barrier free, meaning the office and the examination rooms must be accessible. Temporary ramps, rear “accessible” entrances, lifts that require a key, or any awkward way of entering or exiting an office are not acceptable, nor should the issue be open to discussion. Simply put, parents with disabilities should be able to enter the front door like every other parent.
What should one look for in a pediatrician? Instinctually, you should like the doctor as a caring compassionate human being. You should also like the people working in the office-the nurses and receptionists. Another important variable is the sort of practice the pediatrician operates. Does the pediatrician work with a partner or are they part of a larger practice? Offices consisting of as many as six or more doctors are becoming increasingly common. Larger practices are good in that one can get multiple medical opinions, waits should be shorter, and the staff should be professional and efficient. Unfortunately, you are also far more likely to encounter a doctor that you do not like or find hard to work with.
Personally, I do not like large practices and the style of medicine practiced. I perceive the pediatrician-parent/child relationship a working and continually evolving relationship. Establishing a close rapport with the pediatrician is extremely important. A close relationship is particularly helpful as kids have a penchant for getting sick at the worst time. When your child is ill at 3 am or on a holiday weekend and you are frantic, it is a great relief to know the pediatrician you are speaking to. In this instance, the pediatrician will know the child and parent and be far more helpful making decisions under stressful circumstances.
I feel particularly close to my son’s pediatrician whom I believe is not only an exceptional doctor but an equally exceptional human being. She has looked after my son since the day he was born and despite the fact that I now live well north of Manhattan, I still bring him into the city for his regular check-ups. For us this is the ideal doctor- patient relationship. It is also the rapport that I believe all parents-with disabilities or not- should have with their child’s pediatrician.
Perhaps I am spoiled or simply lucky but it seems to me any parent who accepts a lesser relationship with their child’s pediatrician needs to locate a new doctor. Being a parent with disability and dealing with the medical establishment is awkward enough and a close bond between a child, parents and pediatrician can only enhance the care a child is given.
William J. Peace has a PhD in Anthropology from Columbia University. He is the author of Leslie A. White: Evolution and Revolution in Anthropology.
