Throughout all of my experiences with doctors and therapists, I don’t believe that I have ever been asked how I feel about a certain course of treatment which I am about to receive. This is of course related to the fact that, as I have become older, I have received less such treatment–but it still crosses my mind occassionally that I cannot really understand how so many key decisions about my body could be made without my input. Many of these decisions were ultimately beneficial, but some were not. Still, never was I asked if a certain treatment had helped. And if it hadn’t–well, what could I do about it? I certainly could not undo it.
Ultimately, scenerios like this occur all too often for people with disabilities. Since we require certain special care or medical treatment, we are often at the mercy of doctors and therapists for much of our lives. At younger ages, parents may be involved in making decisions, but how much would a parent even think to question a doctor who is here to “make the child’s life better.” I don’t think that much questioning goes on–and certainly we are very rarely given a voice to question with.
But we do know that there is a reason for all of this attention, most of which is highly negative. We are not unaware of the fact that our bodies function differently than our parents’ or siblings’ bodies. And, with most surgeries and therapies occuring at younger ages, we of course rely on the judgement of these parents and doctors to determine what will happen to us. Although, as adults, we may very well have a decent say in future treatments, we are still stuck with whatever happened to us at younger ages.
We begin to learn at a young age a certain way of coping with “being a piece of meat” for doctors to experiment with. We are taught to lie still and let them contort and measure us. There is a certain amount of distancing which must occur. We begin to learn the particulars of our disabilities–the medical definitions and technicalities–but we must do something to remove ourselves from the discomfort of being handled by this third party whose knowledge is often limited to those things.
And, although we may feel perfectly normal on every other day, we would often do anything to avoid these uncomfortable encounters with the medical profession. When we begin to have these feelings, they bring with them questions of why our bodies have to be different, why they will not cooperate. It is very difficult to feel positively about one’s body when it is the reason for so many uncomfortable and negative situations.
These negative feelings about our bodies can lead to even worse situations later in life–it is difficult to feel attractive when our differences have been highlighted by medical professionals for our entire lives. There is a stereotype, perpetuated by both able-bodied people who are ignorant about disabled people, and by some disabled people themselves, that we are second-class, ugly, useless, not important. I am willing to bet that every disabled person has experienced these self-effacing thoughts at one time or another. This makes social situations all the more difficult, and can cause us to retreat into ourselves, feeling that we haven’t got anything to offer–after all, we are broken in some way, and have been treated as guinea pigs. These kinds of thoughts about ourselves are also very clear to those around us, who will be less likely to feel comfortable approaching us.
Nor are our adaptive living aids very flattering–and we are hard-pressed to find disabled role-models within the media. Many aspects of how society treats us make it very difficult to feel positively about our bodies–and no one but ourselves is truly concerned with whether or not we feel positively about them. We must make an effort to destroy stereotypes, to ignore negative messages about our bodies, and to ultimately learn that in doing so we will rid ourselves of a lot of anxiety. If we feel positively about our bodies, then it is much easier to ignore society’s negative messages about us by realizing how wrong they are.
This is by no means easy and takes a lot of work. Even those of us who feel positively about our bodies and feel that we are attractive can have bad days and setbacks. Negative comments can be more or less scathing depending on mood or setting. Still, by working toward ignoring and subverting negative comments and feelings we ultimately feel better about ourselves, less self-conscious and more open to social and romantic encounters.
How do we do this? Well, first of all we must realize that it is not something which will happen overnight. We must understand that negative comments are simply made in ignorance, and we must look past those who would insult us as simply immature. It is all very difficult, and often I wish that I did not have to do these things–but in the long run I know that I am a better person for it and those who would insult or belittle me are simply in the wrong–their comments are not worth my consideration at all. Focusing on what we can do rather than what we cannot is a very important aspect of improving our image of ourselves. We can begin to realize that we are competant individuals who simply need a little bit of assistance along the way. And when we can see our bodies as capable, we can begin to get rid of the ideas that we are broken individuals. Paying attention to our bodies and the messages we receive from them is also important. Despite the stereotypes that we ought to be as able and independent as possible, it is all right to, and necessary to, learn our limits and not push our bodies past them. There is no shame in resting or asking for help–or at least there should not be. Pushing ourselves past endurance will only make us angrier later, when our bodies are more worn out than they need to be. By being reasonable and not pushing ourselves we are being honest about what we can do and allowing our body some slack. Keeping it feeling good and useful (instead of tired and rebellious) will help us feel better in general and less likely to see the body as the enemy. We must also work against our stereotypes about our appearance. Although we know what is physically “normal” for us, it is difficult not to resent our appearance if we are visibly disabled. We must work toward realizing that “normal” is very subjective, that stereotypes of beauty are usually very far-fetched and hard to adhere to, and that we are attractive human beings. Spending more time observing and working to accept our bodies will help in this. Wishing for a different body is a common practice but not at all a realistic one–we are not going to get another one, and wanting one only accentuates this fact. Learning to love our appearance can be difficult but is definitely possible. You may want to spend some time in front of a mirror and just familiarize yourself with –well, yourself. Or you may feel better about your body by simply paying it some attention in the form of touch. If you have a scar which you do not like to touch or to be touched, work toward erasing these fears. Whatever it takes…remember that we are the ones who must undo the negative stereotypes we have of ourselves. And it is all very possible.