Stigma of Disability

 

SEX AND DISABILITY

Robert Murphy & Becoming Paralyzed

"The lessons learned from the experience of paralysis have profound meaning for our understanding of human culture and the place of the individual within it. The relationship between society and its symbolic standards for acting and evaluating on the one hand, and the strivings and interests of ordinary people on the other are not easily adjusted to each other or mutually supportive. Rather, the individual and culture are essentially in conflict, and history, instead of being the realization of human intentions and cultural values, is commonly a contradiction of both. The study of paralysis is a splendid arena for viewing this struggle of the individual against society, for the disabled are not a breed apart, but a metaphor for the human condition." (Murphy)

Dispassionate Autobiography of Paralysis: Why start this way?

"There is a halcyon period in the life of a middle-class American male that comes at some time between the realization of his ambitions and the start of serious physical decline. It is a time when his earning potential and position in life re at their near zenith, but before the triple bypass or the discovery of diabetes. Despite this, or perhaps because of it, middle age ascendency is usually a time of self-doubt and fear of failing, foe it poses the terrible question: Is this all there is? I had little time to ask that question, for my own golden age lasted on one week" (9)

WHAT DOES MURPHY MEAN BY THESE STATEMENTS?

• The disabled represent humanity stripped down to its bare essentials (????)
• Illness and impairment are, are social and psychological conditions, as well as somatic problems (????)
• Anatomy may not be destiny, but it is indeed the unstated first assumption in all our enterprises (Simone de Beauvoir) (?????)
• Illness negates the "lack of awareness of the body"-the body can no longer be taken for granted

THE SICK ROLE (Parsons)

• Follows Goffman's rules of the stigmatized:
• a persons ordinary roles (mother, father, doctor, friend, neighbor) all become temporarily suspended when one falls ill.
• the individual becomes the SICK PERSON (primary role) with certain obligations
• make every effort to get well again
• seek medical attention, follow doctors orders, etc.
• exaggerated in the hospital setting
• give up power and SUBMIT to treatment
• devote full time attention (every moment) to getting better
• freed from normal responsibilities
• Rules for being sick
• don't complain (have a good attitude)
• only take advantage of the sick role freedom as is suited to the severity of your illness
• patient must conform to rules, regulations and taboos 
• see yourself as the patient (hospital bureaucracy demands this)-conformity and subservience

DISEASE AS A VIOLATION OF ORDER

• many cultures see disease in this way
• failure to observe ritual protocol
• traced to discord in the community
• imbalance in the cosmos
• breaking a food/other taboo
• threat from immigrants
• curing in these cases restore to wholeness/order the BODY POLITIC, allays fears, envies and secret hostilities

" I had an increasing apprehension that I had lost much more than the full use of my legs. I had lost a part of myself. It was not just that people acted differently toward me, which they did, but rather that I felt differently toward myself" (85)"

THE HOSPITAL AS AN ALTERNATE SOCIETY

• bureaucracy with its own hierarchy, values and rules for behavior
• doctors have all the agency
• filled with sick (sometimes gravely sick) people
• treated as things-their identity is reduced to a punch card status 
• little knowledge or interest about the outside world
• role of hospital patient is found in many symbolic indicators
• hospital gown
• hospital bed
• hospital food
• protocols and rules for performing everyday bodily functions
• strict schedules which must be followed
• dimensions of the disability "hit home" for Murphy therefore, only when he returned home to familiar things.
• COMMUNITAS (Turner): formal rules concerning social distance are suspended  and people relate to each other  affectively and diffusely--They no longer hide behind narrowly defined and formal rules of conduct, but rather MEET AS A WHOLE AND CARING PEOPLE (patients/stigmatized)
• saw this in deaf culture, gay culture, etc.

THE PROBLEM OF REEMERGENCE INTO SOCIETY

• "nothing is quite so isolating as the knowledge that when one hurts, nobody else feels the pain; that when one sickens, the malaise is a private affair; and that when one dies, the world continues on without barely a ripple"(63)-SEPARATION & ISOLATION
• facing your own death can be the cause of ANOMIE (Durkheim)
• DEPENDENCE & loss of spontaneity
• attempts to deny disability (ambivalence at new role as an invalid-stigmatized)
• overcompensation
• method for protecting his identity, preserving that inner sense of who one is
• seen as unwillingness to accept the disability and become a good, passive client for their service

THE DAMAGED SELF 

• What is the experience of being a paraplegic
• physical symptoms: disassociation from the body
• not knowing where your legs are
• bed sore/pain & discomfort
• DEPENDENCY (ramp, wife, children, colleagues,students, wheelchair) 
• psychological symptoms
• isolation-being alone in a crowded room (isolation from those who are standing)
• loneliness
• patterns of avoidance by "normals"
• overload with emotion, exhaustion, fear-need a "break", but can not get one
• desire to withdraw from social interaction
• guilt and SHAME 
• DEPENDENCY 
• is this gendered? 
• social symptoms
• infantalization
• Emasculation
• loss of sexuality (gendered???)
• impotence (male)
• female????
• asexual or overly sexed (halo)
• SUPER-GIMP: cover for this loss.
• weakening attributes of the body threaten social/cultural attribution of masculinity.(strength, activity, speed, virility,stamina, fortitude) paralytic tries to compensate for these deficiencies by overachieving in some gendered way
• female: super mom, beautiful appearance, advocate for others in the cause
• male: paralytic athlete, advancement in work, produce children
• Theory of Everything (film)-Stephen Hawings life-an illustration of this.
• loss of social interaction (in chair)
• "The amputee is missing more than a limb, he is missing one of his conceptual links to the world, an anchor of his very existence"
• SUMMARY:
• lowered self-esteem (dependency)
• Invasion and Occupation of thought by the physical deficit (no time for normalcy)
• Strong undercurrent of Anger: 
• Acquisition of a new, totally undesirable identity (replace the biography you carefully worked through your whole life)

"Stigmatization is not the byproduct of disability , but its SUBSTANCE---The greatest impediment to a person's taking full part in his society are not his physical flaws, but rather the tissue of MYTHS, FEARS, and MISUNDERSTANDINGS that society attaches to them (113)"

 THE BODY: Phenomenology of Merleau Ponty (& others)

• Rehabituation: how experience is changed when one learns new ways of making sense of and using their bodies

• Kinestesia: (Maxine Sheets Johnstone) not an object of consciousness or perception, but more accurately a “felt unfolding dynamic” Knowing where you body is in space all at once. Something that athletes possess. Movement and attention to movement can produce a heightened sense of awareness and less stressed sense of identity---a less rigid sense of self. What does lack of movement do therefore? Changing one’s way of moving our bodies also has an impact on how we feel about ourselves and the environment.

                “…Depression is often experienced in the body as a passive giving in to weight.. The slightest movement can diminish this. What is important is the indication of participation, rather than passivity”

• Embodiement (Philip Zarelli). Relational modes of experience. When we engage with our bodies we are able to have more heightened levels of experience  in which we see ourselves as full human beings…the body connected to the mind in a dialectic

• Corporeality (Maurice Merleau-Ponty): the body is the way that we place ourselves in environments and experience the world. Therefore, the body is the basic starting point for understanding EVERY experience
• phantom limb phenomenon: 
• a refusal of the mutilation and disablement is a commitment to "a certain physical world despite handicaps and amputations and who, to this extent, does not recognize them openly and completely"
• the amputee is missing more than a limb, he is missing one of his conceptual links to the world. 

• Body Centrality (Simone de Beauvior): The body is not a thing, an entity separate from the mind and the rest of the world in which it is situated.
• the body is also a "set of relationships that link the outer world and the mind into a system"

• Disembodiment (Oliver Sacks):
• loss of all sense of the body. A proprioceptive knowledge that enables the coordination of movement and feeling and such. 

ATTITUDES TOWARD THE BODY IN AMERICAN CULTURE

• a good body requires exercise and diet that attains the appropriate shape and proportions. This is a reflection of your discipline and moral character
• moral quality supported by the notion of "self-improvement"
• the disabled "contravene" all the values of youth, virility, activity and physical beauty
• disabled present a fearsome possibility about the nature of imperfection in American culture & society

GOFFMAN: DEFERENCE & DEMEANOR

• "each party must comport him/herself as a person of worth and substance, and each must put social space and distance around the self. The other in turn, respects the demeanor by according deference. The extent of this mutual respect varies of course, with the situation and the people involved , and the way in which it is expressed is an artifact of culture. It occurs through the subconscious grammar of gesture and verbal nuance , a language so subtle that it escapes the awareness of both user and hearer, except when it is withheld-as it so often is for the physically impaired (119)"
• disabled are always met with partial withdrawal of deference
• disabled are sometimes seen as evil (pop culture) FACE
• SPREAD--when a physical deformity is generalized to one's character (Beatrice Wright)
• disability is at center stage , the parties involved in conversation must take pains to practice DEVIANCE DISAVOWAL (Fred Davis) where the participants try to conduct themselves as if nothing is amiss.
• TOUCHING is a sign of changed deference
• common bond with others that are disenfranchised
• ease with the opposite sex-NOT A THREAT

SHIFTS IN THE SOCIAL ORDER-Meaning of TOUCH

• Not long after I took up life in a wheelchair, I began to notice other curious shifts and nuances in my social world. After a dentist patted me on the head in 1980, I never returned to his office. But undergraduate students often would touch my arm or shoulder lightly when taking leave of me, something they never did in my walking days, and I found this pleasant. Why? The dentist was putting me in my place and treating me as one wold a child, but the students were affirming a bond. They were reaching over a wall and asserting that they were on my side. I ws a middle-aged professor and just as great an exam threat to them as any other instructor, but my physical impairment brought them closer to me because I was less imposing to them socially (126-127)

TAKING DISABILITY OUT OF THE FRAMEWORK OF DEVIANCE-LIMINALITY

• WHY? --it confuses many issues
• Disability as LIMINALITY
• initiate, isolation, instruction of the initiate, reincorporation into society in a new status)
• rules surrounding the treatment and interaction are unclear
• they are in the transitional phase between isolation and emergence
• Reason that there is such aversion toward the disabled

THE STRUGGLE FOR AUTONOMY

Disabled people share a lot in common but are also very diverse . What they do share is the experience of having to overcome great human and physical barriers in order to avoid isolation

INSISTENCE UPON CREATING NORMALCY

"I find it easier to handle encounters with small groups than with individuals. Individuals pose the problem of IMPRESSION MANAGEMENT-of negotiating the difficult process of normalizing the meeting, of negating the great contingency upon my identity"(170)

INCREASING DEPENDENCY

• dependency versus independence
• autonomy versus contingency

"the problems of dependency versus independence, of contingency versus autonomy are...universal aspects of all social relationships. the ability to survive on ones own and to maximize the self-determination, are essential ingredients of the basic drive to live. We try to shape the soil life around us, rather than become its pawns and victims, and this involves the use of POWER, however subtle or gentle. The disabled have few such resources, instead they must seek social control by MORAL COERCION, and social standing by CULTIVATION OF ADMIRATION. But to become admired, one must be stoical and self-reliant...nowhere is this more difficult than in the disabled persons own family (202)"

• inability to stand anymore
• loss of speech
• loss of shoulders to move wheelchair

TREATED AS CHILDREN

• pat on the head by the dentist
• "lack of autonomy and unreciprocated dependence on others bring debasement of status in American culture---and in many other cultures. Most societies socialize children to share and reciprocate , and also to become autonomous to some degree. Over-dependency and non-reciprocity are considered childish traits, and adults who have them-even if it is not their fault-suffer a reduction in status (201)"
• ESCAPE FROM DEPENDENCY HAS BEEN A CENTRAL THEME IN THE DISABILITY MOVEMENT-independence

EFFECT ON THE FAMILY

• Do I detect a not of impatience? Is she annoyed? Is she overtired? Should I have asked her? Does that slight inflection say, "What in the hell does he want from me now?" This is not completely a concoction of my imagination, for we have been married so long we are thoroughly familiar with each other's rich sub verbal vocabulary of tone, accent, stress, gesture, and facial expression. After all, we had learned in the Amazon to communicate in part sentences, half-words, and grunts. In my disabled mindset however, I pick up the right cues but I alter and magnify them, interpreting a small note of fatigue as a major resentment and reading rejection into a fleeting expression of annoyance. The anticipation of such responses, in turn, affects the way I phrase requests...[T]here is a heightened self awareness and guardedness in our relations that wasn't there before, and that has reduced openness and spontaneity. Our very attempts to avoid conflict through increased tact and delicacy have become part of the problem, not its solution. (214)
• effects on family
• effects on relationships