Who gets to decide who is normal and who is handicapped?

A picture of my label

Officially, those in the medical profession decide who is handicapped. A doctor slaps the handicapped label on us with a "diagnosis." In my case it is something called Arthrogryposis. Doctors, right or wrong, are one of the ultimate authorities in our culture. Many confuse medical practice with god-like powers. Dr. so and so is great and can fix it! When given the handicapped label, the first thing any parent wants to know is can it be mended? Can my child be made whole? This is normal, natural and acceptable. Often, there are things that can be done with the tremendous advances we are making in medicine. But that’s not always the case. The doctors diagnose the condition and treat it as best they can. Unfortunately, they sometimes forget an important need, the psychological impact on the parents and the child later in life. The parents may have feelings of guilt, inadequacy and stressfulness. It is likely that they have the same attitudes towards disability that society has. The disabled are to be felt sorry for, taken care of and have no chance for a so called "normal life." This is not because they are bad people, it is simply what they have learned. Parents may need to be re-educated  to think of what their child can accomplish despite physical ore even mental limitations.

I was lucky because my Mom would not accept a bleak future for me. She saw to it I had the best medical care possible taking me by car every month or so to Duke University Hospital. I had a great Doctor, Frank Clippinger who took my severely clubbed feet and remade them into the load bearing structures they are today. Without his efforts, all the good will and swimming pools in the world would have not got me walking. Mom and my Grandmother helped me exercise my working muscles everyday as an infant. They later told me I cried and cried and it must have been extremely difficult for them. They wanted me to be able to reach my full potential and not be put away in some room to be cared for the rest of my life. Born in the late 60's I may have miss being institutionalized just by a few years. Unfortunately, I’m the exception. There are plenty of others out there who do not have the means to get as good of care as I got and have a family support structure strong enough to let me live up to my potential. Overcoming the handicapped label can be daunting. 

Labels can be soul crushing. Consider this. Under our current system it is extremely difficult for someone living in public housing to work their way out on their own. The conventional wisdom says people in public housing are there because they lack initiative and are lazy. The same can be said for those on Food Stamps or similar assistance programs. Another way to look at it is they have been “labeled.” Again this starts with professionals. In this case, instead of doctors, the professionals are social and charity workers. They are trying to help because in our society, there are extremely few good options for the poor and less fortunate. Now let’s assume there is a new single mom living in public assistance housing on Food Stamps who loves her little one as much as any mother out there and her little one has special needs. She will not be able to get in her car (even if she has one) and drive several hours to the nearest high end University Medical Center. If she is working some long hour minimum wage job who will be there to help with the needs of her baby? It is possible she may succumb to "the everyone must feel sorry for my baby and me" narrative. This will do little for the child’s future. The questions are what can be done to correct such a power imbalance, what needs to change and how to change it?    

Call it what you want. Handicapped, disabled physically impaired, crippled and I may be missing a few others but they all have negative connotations in our culture. The underlying narrative these terms share is something is missing, we are some how not a “whole” person, and we cannot do for ourselves. We are often felt sorry for and for too many remain hidden away from mainstream life in institutions, substandard housing or with family. How many handicapped actors are there? How many books do we show up in? When given such a label, it becomes internalized. We take on the role of someone who wants sympathy, cannot participate in society or even take care of ourselves. It is self fulfilling prophecy at it’s finest. I don’t think such a person could be expected to break out of this situation on their own. How could they if this is all they have ever known? Becoming independent and a fully functioning member of society is dependant on learning. This starts at home. If the family follows the script that goes along with the disabled label assigned by the medical profession and reinforced by the rest of society, there is no reason the outcome will be good for the individual. I’ve not had that much experience with other so called "disabled" people. But I’ve noticed those who see themselves as being disabled are ultra self-centered only able to talk about their own problems seeming to forget that all people suffer in one way or another. The only way to break this cycle of learned dependence (can it also be read prisoner?) as I see it is education. We need to be educated on alternative possibilities. Instead of a focus on what we cannot do (I cannot ever be an NFL star, for example), we need to learn things we can do (I can write).  Dependence equals no or at least less freedom.

Powerlessness is learned. Along with having no power, less freedom is also learned. One cannot imagine venturing beyond the confines of an intuition or the home.  Where is the freedom in having all the big decisions made by caregivers for the individual? In the extreme even something as simple as when to go to the bathroom is decided by others for the disabled person.      

I had an interesting experience in high school. I was in a car accident with Todd and broke both my patellas (small bone in the knee joint) and was unable to walk for around two months. The funny thing was how some of the medical people helping me just assumed I was unable to walk before this happened. One lady in particular, a physical therapist, stereotyped me as the bitter handicapped teen. She would talk to me as if I was pissed off at the world and everyone else was to blame for my problems. One day she came in and asked me if I was excited about my new wheelchair. There were a few problems with this. It was not a new chair. It was only a rental and prior to this accident I had never used one. I politely as I could informed her of these facts but I don’t think it sunk in that I was not bitter about anything. I was not even mad at Todd who was driving when the accident happened. Shit happens! I think it is very hard for us to let go of our assumptions (me included). I don’t think the physical therapist is a bad person who should be working at a correctional facility instead of a hospital. She only knows what she has learned after all and it is entirely possible I simply took her the wrong way. I have been treated worse.

During the same time there were a few nurses who would talk to me as if I was a child. It was harder to be nice in this case but I did. Somehow they thought because I had additional physical limitations beyond my broken knees there was a problem with my brain as well.  They would talk to me about using the bathroom like a four year old. “Paul you must pee pee.” One said. I took my revenge. A friend smuggled in a 16oz Budweiser, I chugged it down and peed with a vengeance filling several containers in the process. Fortunately, she never caught on to the reason behind my sudden urges to go. It may not have ended well. Overall, I’ve had good relationships with doctors and other medical professionals.

I had another nurse who treated me like the king of the world checking on me often and despite my young age addressing me as sir. It felt funny and I asked her not too. I had another physical therapist, Beth, who saw me more as just another task in her day. She made me feel like a person, not a case. The docs who worked on me did the same as Beth. They often seemed to be in too big a hurry to move on but overall they also treated me like a human being. Being an asshole I learned a long long time ago would not get me anywhere. So I do my best to always be polite, epically to those whose job it is to care for me when I’m in the hospital. Almost without exception it worked.