The Stratification of Illness and Disability

One way to see illness and disability as topics for sociology is to see them as mediated through culture, and so, let us say, some groups report more symptoms or different ones than does another group, or researchers point out that primitive peoples saw epileptics (and gays) as people inspirited by the gods. Another way to address the issue of the social context of illness and disability is to think of illness and disability as part of the universal human condition. People's selves (or souls) inhabit a body on which they depend and sometimes those bodies fail them, either temporarily or chronically or terminally. How do people deal with the fact that there are periods of time when they cannot carry out their normal round of life? Sick and disabled people are deviant in that they cannot meet their other responsibilities. We excuse them with sick days or time off to lay in bed until they recover if their ailment is temporary, which is usually the case with infectious diseases. We make accommodations, such as wheelchair ramps, for people who have chronic or permanent problems. We supply philosophical or religious surcease for those who are terminally ill, and then we remove their remains from sight according to legally binding rituals like death certificates and socially mandated ceremonies such as funerals. Illness and disability are therefore conditions to be managed. As Goffman pointed out, a person with a colostomy will try to hide the fact and so not offend people by smelling bad. Blind people and the wheelchair bound, Goffman also noted, will call attention to their condition so as to set the non-ill and non-disabled at ease in dealing with them. Hospitals and nursing homes are places to send the ill so as to treat them but also so as to get them out of the way, hospitals originally places to send people so they could die out of sight.

This view of medicine as dealing with either temporary or terminal conditions, Goffman going beyond that, was appropriate for the hospital based medicine of the middle of the last century when doctors mainly confronted infectious diseases and did surgeries. All of the latter and some of the former requiring hospitalization. Hospitals measured themselves on occupancy rates because they charged people for the rooms as well as for the services provided in hospital. That has changed. Hospitals have been reorganized so that more and more services are provided on an outpatient basis and through satellite facilities which are, basically, a suite of medical offices for associated physicians. More and more of medicine consists of providing prescriptions from among the increasing variety of drugs that are available for any number of both temporary and chronic maladies. A different model that that of temporary seclusion, either at home or in a hospital, is required to understand what goes on in medical care.

A different insight to apply from sociology to medicine is the idea of stratification, which means the ranking of roles so that one role or another is placed as worse or better off than each one of the other roles in the collection. Social class ranks the classes on prestige, wealth and power and sophistication of aesthetic tastes. Children are ranked by age into school classes because the older grades are supposed to be able to handle harder work than the younger grades and also build on what they have learned earlier on. Beauty is not ranked except at pageants because people are continuous in the attractiveness of their looks and most people are alright, only some regarded as pretty or handsome to anyone other than those who know them. Illnesses and disabilities can, however, be ranked according to whether the condition makes its victims capable of coping with ordinary life and the distinctions between the categories are qualitative rather than merely a matter of degree.

The people who are closest to the normal or able bodied are those whose limbs are diseased or lost and so they cannot get around on their own or perform routine chores. The wheelchair disabled, however, can establish a relatively normal round of life by using technological devices, such as wheelchairs and prosthetics, and so still have to put up with the shame that comes from being gawked at or being temporarily helpless when they don’t have access to their devices, as was agonizingly made clear by Harold Russell in “The Best Years of Our Lives” when he made clear to his fiancee just how helpless he was when his artificial arms--hooks, at that point--were removed. The wheelchair bound and the prosthetic dependant will therefore lobby for legislation that will make it easier for them to have almost a normal life. The American Disability Act largely addresses their particular grievances by requiring the building of ramps into office buildings so as to accommodate wheelchairs and to building elevators at crucial subway stations so that the impaired can use the subways. When a friend told Isaac Perlman, the largely wheelchair bound violinist, that he wasn’t missing much by not going into subways, he said that he would like to do it anyway. A hero of the crippled was Stephen Hawkings, who used technology to continue to communicate long after his body had made it very difficult for him to communicate by ordinary means.

The problems shift away from integration into the able bodied society as soon as you move onto the next level of disability, which is those people who suffer from sensory deprivation: the blind and the deaf. There, technical accommodations may make a difference, as is the case with Braille, but there is some resistance to technology among those in the deaf community, who refuse Cochlear implants, which allows some level of speech to be heard, because it robs the deaf of their sense of being a community tied to one another by American Sign Language, and so entitled to the respect accorded to any other ethnic group rather than to be regarded as an inferior species of people.

Further down the line are people with severe organ problems, such as cancer or heart disease or liver failure. These may resist but finally accede to segregation from ordinary life. The goal of assimilation is replaced by at least temporary, but possibly terminal, admissions to hospitals or hospice centers which are the only places that can offer either curative care or palliative care, the horizons of the patients narrowed to their own bed or hospital room to which visitors are admitted so long as it doesn’t tire them out. People in hospitals are grateful for the fact that help is just a buzzer away for anything that needs tending to, so profoundly aware are patients of their dependency, and the sign that a patient is on the mend is how anxious he or she is to be out of there. Drugs available at such places make the illness, even if terminal, bearable, and so not worse than the condition which is to follow, which is being dead.

Meanwhile, there are kinds of disability for whose sufferers hospitals become places of refuge and bases for community. Children who were confined to hospitals for long periods of time to recover, as best they could, from the ravages of the polio epidemics of the Forties, treated their hospitals as communities in that they held wheelchair races down its corridors. Seriously disfigured and mentally challenged patients find the shock on the faces of the people who come to visit as amusing. Hospitals accept you for what you are, even if the idea of a place being “segregated” has bad connotations because of its association with ethnic communities.

There are, however, disease conditions which are fates worse than death in that death is greeted as an end to suffering rather than as never a friend. This used to be the case with mental illness where there was no surcease of pain to those who suffered from severe mental illness and their selves were troubled by hallucinations and emotions and thoughts that were contorted although it is difficult to dissociate oneself from one’s own thoughts and judgments however contrary they may be to those that are felt during more sane periods. The seriously mentally ill do not have the anchor of their own judgment to rely on and so fall even deeper into their depressions or manic phases. Only the advent of modern mood altering drugs has given relief to this population which at one time was subject to ridicule and anger and was, for its own well being, secluded in institutions, death the only way to escape from their suffering.

Old age presents all of the conditions whose types are stratified. Old people can be only limb impaired, in which case they can compensate for their infirmities with walkers and other publically available devices that are supplied primarily for the crippled. I remember a friend who said, in her declining years, that an elevator installed at a subway station was done for her benefit so that it was there for when she would need it.  Elderly people also suffer from hearing and vision losses that make able bodied, which means younger, people, think they have lost their mental acuity. They are particularly vulnerable to cancers, which arise in one or another organ, and which may or may not respond, at the moment, to surgery or some other kind of therapy. It is considered indelicate to point out that they are less attractive than they once were, that their wrinkles and misshapen bodies show. And, mercifully, Alzheimer’s does not contain as much pain as some other mental disorders, and even the sense of losing one’s marbles passes as a person turns into a shell that still has to be taken care of.

Old people also face the problem of whether to segregate or not, though here it is a matter of cultural style and voluntary rather than impacted largely by the nature of the condition. For a generation or two, old people settled in retirement communities which allowed them peace and quiet and the services specific to the elderly, like easy exercise gym programs and paths for walking. More recently, people retire to university communities so as to take advantage of lectures and art galleries and restaurants. Nursing and old age homes now also contain art galleries so as to encourage families to make more extended visits when they come to call.

Yet, of course, old age remains a last stage before death, the fate that greets us all, and that fact is not a medical problem but a philosophical one for which there are no good answers and so medicine is only charged with the responsibility of keeping body and soul together through their travails together for as long as is presently possible.