Using the methodology of philosopher, John Dewey, the author proposes an alternative bio/psycho/social approach to understanding the patient/clinician.
Table of contents
- The person in the disabled body: a perspective on culture and personhood from the margins
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- Empathy as a Foundation for the Biopsychosocial Model of Medicine
- Get Integrity and Personhood:: Looking at Patients from a Bio PDF
The findings were organized according to themes. In the course of the fieldwork at the center, definitions that at first appeared self-evident came under question and emerged as more complex. One seemingly clear-cut classification was that of disabled attendees and able-bodied caregivers. All others were assumed to be caregivers by default. The taken-for-granted attribution of disability to visible bodily defects came up naturally in the introduction of the center to visitors, including the first author, who was unwittingly led to classify the person seated in a wheelchair or going about with a cane and a splint as a patient, and the one walking upright on his or her own two feet as a caregiver.
A more subtle observation, however, revealed that the rigid division between disabled attendees and able-bodied caregivers did not go unchallenged. Rafi, a man in his fifties, paralyzed in the lower part of his body and mobile by means of a powered wheelchair, is a case in point.
Having initially arrived at the center as an attendee, he soon assumed the position of its secretary:. I was here a month as an attendee. I went to the director and told her I was leaving. Most of the volunteers here are crap. Another example of the local dichotomy of disabled attendees and able-bodied caregivers is Tehiya, who was introduced to the first author as a volunteer. Tehiya walked on her own two feet and was very well groomed, wearing stylish clothes and makeup. She even showed up for the meetings of the care givers team.
It took the first author a long time to notice that the other volunteers never approached her for help or cooperation, as if there was an unspoken agreement on the subject. Tehiya also suffered several bouts of hypoglycemia to the point of fainting, when an ambulance was needed to take her away. Asked why Tehiya did not come to the center as an attendee, but received the symbolic payment of volunteer, the director replied:.
Tehiya is not disabled. The organization we belong to does good deeds, and this is one of them. While Tehiya and Rafi may represent exceptions, their cases serve as useful markers of a more consistent, though subtle, rule. In some cases such knowledge indeed facilitated creative negotiations, as exemplified by Rafi and Tehyia. The relationships that were formed at the center were largely focused on the body. Talking about the body established a new discourse on the person, revealing that the disabled body created an impaired, childlike, dependent self that lacked elements of sexuality and was deprived of its previous functions, such as in the area of gender.
The injured body was the main subject of discussion during the first encounter between the caregivers and the attendees. Attendees spent a considerable number of hours every day managing their bodies and tending it in various ways. The volunteers and staff likewise frequently undertook tasks concerned with bodily needs: Attitudes to the body were expressed in several ways: Attendees frequently expressed frustration with their lack of control over their bodies.
They used poignant metaphors of a broken or malfunctioning body that brought into sharp relief the cultural emphasis on control over the body as an essential component of adult personhood:. The tonus goes higher and higher, the hand is completely paralyzed, the leg is splinted. I have no stability in my body. For example, they related how doctors would choose to direct the explanation about the injury to their spouses and not to them, even when they themselves were present. They were well aware of these situations, which recurred in different variations in their daily lives, making it difficult to go out alone.
In the therapy group the attendees were asked to draw their bodies as part of an exercise to build a bridge to their unconscious. After completing the drawing, they were asked to talk about it. The drawing below exemplifies the theme of lack of control, a feeling so powerful that it surprised even Adiva, the woman who drew it:. Apparently, upon experiencing new and unfamiliar feelings, attendees approached the medical personnel, who established an initial sense of control over the condition by the very naming of it.
Attendees showed minimal resistance to what the physicians had to say, and even when they tried to resist were easily silenced by their relatives and acquaintances. They and their relatives tended to treat the opinions voiced by members of the medical establishment about the nature of their injury as highly authoritative. It has a direct connection to brain damage. A lot of people suffer from it. Obviously, something got damaged in the brain and in the areas connected to depression.
He gave me pills and said it was for life. I took the pills—what difference does it make, one pill more, one pill less. The social worker thinks the same as the doctor. She talked to my wife about it, and began to do her head in with it and said it was normal and that there are stages of mourning. My wife came to talk to me about it.
Attendees tended to be very conscious of the unusual state of their bodies, and they said that this awareness was intensified by the attitudes of those around them. Sometimes the attitudes that they absorbed most strongly illuminated the symbolic burden carried by their exceptional body, as well as other underlying assumptions regarding disability that encompass a person with an injured body.
The attendees reported that sometimes they took advantage of these preconceived ideas, by allowing themselves to behave in unacceptable ways or by falsely pretending to be unable to perform certain tasks. But above all, they resented these assumptions because they prevented them from participating in social life along with those who looked, and were perceived as, healthy. As Rafi, the attendee in a wheelchair who volunteered as secretary, described it:. One day someone or other from the municipality came in here looking for Zefira. I told her that I was the secretary here and asked if I could help her.
She ignored me and went to Tami to ask her. She thought that I was wrong in the head or something. For example, when I go to the Town Hall I start yelling straight away.
The person in the disabled body: a perspective on culture and personhood from the margins
The main thing is that they give me what I want right away. Yishai expressed similar sentiments about being treated as if he were incapable of doing anything:. For example, they hand everything to us, and if I go near the hot kettle they start shouting straight off as if I were a three-year-old. At home I make myself coffee without any problem. I can be on my own for hours sometimes. But here they leap up to do things for me. The attendees perceive and convey this dependence as something negative and undesirable in a society that nurtures independence, hence reinforcing and legitimizing their exclusion.
From the interactions between the attendees and the medical establishment, which are the predominant interactions in the construction of disability, many hidden messages emerge, at times more meaningful than overt messages. These covert messages take the form of ignoring the disabled person and promoting explanation-giving and decision-making between the doctor and the family, while omitting the client themselves.
Sexuality and gender as dominant components of adult personhood, were always present within the walls of the center. Prominent motifs in the construction of these issues were fracture and continuity, although attendees and their spouses differed in the expression of these motifs. Denial of sexuality by those whose bodies had betrayed them was ubiquitous at the center. The relations between attendees and caregivers evinced consistent disregard for accepted codes of interaction between men and women, as verbal and physical gestures, which outside the center would probably be interpreted as sexual harassment or condescension, were completely normative.
These included birthdays, holidays and special events, which in Israel are usually celebrated by children at school and kindergarten, but not by adults at workplaces. All the participants were seated around a table laden with goodies, such as chocolates, cookies, soda and cake. Most participants there suffered from diabetes and usually made an effort to avoid these foods. The birthday started with some birthday songs, followed by eating the food. The birthday party was described as an excuse to ignore their diet:.
Even the doctor said that every once in a while, at special events, we are allowed to deviate from our diet and eat some candies. The participants were asked if they marked their birthdays that way before they arrived at the day center:. When they asked me, it took me a couple of minutes to remember.
We usually celebrated within the family.
We ate a cake. We did it mostly for the children. I was a pre-school teacher, and the way we celebrate here reminds me of those days. It looks exactly the same with the candies and the songs.
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The only difference is that in pre-school the birthday kid sat on a chair and we lifted him up in the air. Other holidays were celebrated using a format that is more accepted among children. After a party on Purim a Jewish holiday where people wear costumes , the participants described their feelings:. I wanted to go home, and my wife wanted to stay. If you want to go to the bathroom you have to move all the people sitting next to you. We have to show our appreciation.
The argument that the participants did not fully identify with the nature of the event, but cooperated to satisfy the volunteers, was repeated several times during the fieldwork. Differences between men and women stood out sharply in all aspects of sexual and gender self-perception. The subjects of conversation between men and women were fairly stereotypical and replete with blatant symbols of sexuality.
For example, at three meetings of the therapy group, the conversation centered on driving and vehicles, but quickly shifted into relations between men and women prior to the injury. In these conversations the women were silent, only requesting a change of subject after several meetings:.
Empathy as a Foundation for the Biopsychosocial Model of Medicine
Yissachar turns to Aryeh: What man, what kind of a man? The days are over when I can go around like a man. Once there were women tourists in town and then I really did go around like a man—in every sense of the word. I had a fabulous woman here. We had the time of our lives for years.
I was a living man. She knows what I was before the injury. You can never do it like it was…. The metaphor of mobility and the inability to drive a vehicle and thus move freely in the public sphere, came up time after time among the men, in juxtaposition to their boasting about sexual relations with different women. They constantly lamented their injured body, which limited them and their sexual activity, and reminisced about their past sexual prowess.
Unlike the men, who persistently bemoaned their difficulty in sexual functioning, the women ignored this subject entirely and repeatedly talked about their distress at being unable to perform house work and care for others. The problem they constantly complained about was their inability to do things the way they had, such as entertaining relatives and running the home properly, which they perceived as their sole sphere.
By challenging these dominant views the author can explore presuppositions that are defective. She further explains how they come to be so readily and uncritically held and reinforced; and, why their implications can have such a profound affect on how we think and act. Read more Read less.
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