"Where Would SHE Like to Sit?" by S. Kay Toombs, Ph.D.

<body topmargin=0 leftmargin=0 marginheight=0 marginwidth=0> <table cellpadding=0 cellspacing=0 border=0 height="100%"><tr> <td valign="top" width=220 BGCOLOR="#CCCC99" TEXT="#080000"> <div> <A HREF="index.htm" TARGET="_top" TITLE="Practical Spirituality"><U>WMEades.com Home Page</U></A></div> <div> <A HREF="http://www.counseling-waco.com" TARGET="_top" TITLE="http://www.counseling-waco.com"><U>Counseling-Waco Home Page</U></A></div> <div> <A HREF="http://wacopartnership.org" TARGET="_top" TITLE="http://wacopartnership.org"><U>Waco Partnership for Psychological and Spiritual Care Home Page</U></A></div> <div> <A HREF="http://practicalspirituality.wordpress.com/" TARGET="_top" TITLE="http://practicalspirituality.wordpress.c"><U>Practical Spirituality Blog</U></A></div> <div> _________________________</div> <div> <A HREF="aboutme.htm" TARGET="_top" TITLE="About Me and My Work"><U>About Me and My Work</U></A></div> <div> <A HREF="id518.htm" TARGET="_top" TITLE="Making an Appointment"><U>Making an Appointment</U></A></div> <div> <A HREF="policies.htm" TARGET="_top" TITLE="Policies"><U>Policies</U></A></div> <div> <A HREF="cost.htm" TARGET="_top" TITLE="Cost of Counseling"><U>Cost of Counseling</U></A></div> <div> <A HREF="helpfularticles.htm" TARGET="_top" TITLE="Helpful Articles"><U>Helpful Articles</U></A></div> <div> <A HREF="directions.htm" TARGET="_top" TITLE="Directions to Office"><U>Directions to Office</U></A></div> <div> <A HREF="booksummaries.htm" TARGET="_top" TITLE="Book Summaries"><U>Book Summaries</U></A></div> <div> <A HREF="counseling.htm" TARGET="_top" TITLE="Pastoral Counseling"><U>Pastoral Counseling</U></A></div> <div> <A HREF="premarriage.htm" TARGET="_top" TITLE="Premarriage Counseling"><U>Premarriage Counseling</U></A></div> <div> <A HREF="enneagram.htm" TARGET="_top" TITLE="The Enneagram"><U>The Enneagram</U></A></div> <div> <A HREF="id494.htm" TARGET="_top" TITLE="Alcoholics Anon. 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Mtgs.</U></A></div> <div> <A HREF="faith.htm" TARGET="_top" TITLE="When Faith Doesnt Work"><U>When Faith Doesn't Work</U></A></div> <bR> <div> <A HREF="http://www.theravive.com" TARGET="_top" TITLE="http://www.theravive.com"><U><IMG SRC="83da03c0.jpg" border=0 width="160" height="60" ALIGN="BOTTOM" HSPACE="0" VSPACE="0"></U></A></div> <div> <A HREF=".htm" TARGET="_top" TITLE=""><U><This link's target cannot be found></U></A></div> <bR> <div> <This link's target cannot be found></div> <bR> </td> <td valign="top" BGCOLOR="#EEEEEE" TEXT="#080000"> <div> The Personal and Societal Challenge of Chronic Illness and Disability</div> <div> (presented here by permission of the the author)</div> <bR> <div> 1998 Women and Health Lecture</div> <div> Center for Health Policy and Ethics</div> <div> Creighton University, Omaha, Nebraska</div> <div>                     </div> <div>      I would like to begin by introducing myself in a personal way because my reflections on chronic illness grow out of my own experience.  In 1973, at the age of 29, I was diagnosed with multiple sclerosis.  Since then I have lived with a chronic progressively debilitating neurological disorder and have been intimately involved in the day-to-day challenges that such illness poses.  </div> <div>      Over the years my illness has affected my ability to see, to hear, to feel, to stand up, to sit up, to walk, to control my bowels and bladder, and to maintain my balance.  Some abilities, such as sensing the position of a limb, I have lost abruptly and then slowly regained.  Some, such as clear vision in one or the other eye, I have lost and regained numerous times.  Other physical capacities have disappeared and never returned.  I can, for example, no longer walk because I am unable to lift my legs.  This latter change has, however, been gradual.  For a number of years, although the muscles in my legs became weaker and weaker, I was able to get around on my own two feet using first a cane, then crutches, and finally a walker for support.  Several years ago, I was forced to give up the walker and begin full-time use of a wheelchair and battery operated scooter for mobility.</div> <div>      My illness has taken different forms:  For the first sixteen years I experienced exacerbating-remitting M.S. in which there were discrete attacks of limited duration followed by extensive periods of remission (although recovery was often incomplete leaving some residual disability, such as a limp).  Then the disease changed into the chronic-progressive form. There were no more acute attacks, but no remissions either.  Rather there began a slow progression of disability which continues to this day.</div> <div>      During this twenty-five year journey with illness, I have been hospitalized numerous times for evaluation and treatment.  I have also tried a variety of drug therapies  -- some of which have been helpful, some of which have been extraordinarily disruptive with, at best, questionable benefit.  </div> <div>      In the midst of this life journey I decided to change careers and go to graduate school to study philosophy.  I became interested in the philosophical perspective of phenomenology -- a perspective that focuses attention on the way we experience the world and constitute meaning.  This perspective has caused me to reflect deeply about such things as: the difference between the sick person's immediate experience of illness and the health professional's conception of illness as a disease state;  the ways in which we experience our bodies differently in health and illness; the change in the significance of time and space; the disruption in our relationships with others, the emotional and existential impact of serious illness, and so forth.  But this has not been a purely academic exercise.  I am convinced that such reflections have implications for the way we respond to illness (be it our own or someone else's), as well as implications for how we respond as a society.</div> <div>      This afternoon I want to bring these reflections to bear on the challenges of chronic illness and disability.  I will begin by focusing on the experience itself --- what it is like to live with illness on a daily basis.  I will then reflect on the challenge that chronic illness poses for clinical medicine, and for us as a society.  </div> <div>      I want to begin by stressing that the experience of chronic illness is quite different from  acute illness in important ways: Firstly, with respect to its temporal dimension, chronic illness poses a particular challenge in the sense that it calls for an ongoing response.  Chronic illness persists over time.  It does not go away.  If one has an acute disorder such as the 'flu, no matter how terrible one feels now, one expects in a short period of time to  return to health -- to the way one was before the illness occurred or was diagnosed.  So there is a sense in which one can "put up with" the temporary disruption, knowing that it will not last for long.  </div> <div>      Disorders such as the degenerative diseases of the elderly, neurological disorders, chronic pain, debilitating heart disease, AIDS, cancer, do not allow such a response.  One cannot expect a complete return to health.  Even if the disorder is episodic and one is not experiencing overt symptoms at the present, the illness threatens always to intrude into one's life, to disrupt plans and projects.  In life threatening disorders such as cancer, this is true even if the disease can be "cured".  The illness endures in the sense that patients remain uneasily aware of the possibility of a recurrence.</div> <div>      In this respect the diagnosis of incurable illness, in and of itself, is a life changing event. One has to come to terms with the reality that one will always be a person living with illness.  On hearing that I had MS, I remember wishing fervently that I could go back a few moments in time -- to the time before I knew -- because I recognized that the pronouncement of my diagnosis had changed my life in a fundamental way.  From now on, no matter what happened, I would be a person-living-with-multiple sclerosis.</div> <div>      Diagnoses mean much more to patients than simply the identification of a particular disease state.  The dread diseases -- cancer, AIDS, Parkinsons, heart disease - carry with them a particularly powerful symbolic significance.  In receiving such a diagnosis, one is forced to deal not only with physical symptoms but, as importantly, to confront the personal and cultural meanings associated with the disorder, particularly perhaps with respect to the response of others.</div> <div>      For example, on hearing that I had MS people immediately began to treat me differently.  Even though I had no obvious signs of illness, I was encouraged to re-evaluate or relinquish important career goals.  Indeed, one of the dilemmas faced by persons with chronic (as opposed to acute) illness is the decision of whether or not to disclose their illness to others.  Disclosing a particular diagnosis often jeopardizes significant personal and professional relationships, as well as career opportunities.</div> <div>      Illness changes our relationship with our bodies.  In health we take for granted that we have control over our bodies.  If I am seated at the dinner table and I want some water, I am confident that my arm will respond when I begin to move it towards the glass and that my hands and fingers will perform the various motions required to raise the glass to my lips in order that I may drink.  Indeed, I am so certain of this bodily compliance that I pay absolutely no attention to my body as I accomplish this task.  As I reach for the glass, I am probably listening to my dinner companion and I am only vaguely aware of the location of my arm.  Under normal circumstances, I am even less conscious of bodily functions such as breathing, seeing, hearing, or the beating of my heart.</div> <div>      Bodily disorder destroys this taken-for-grantedness.  When the body refuses my commands, it suddenly appears to have a will of its own.  Rather than being that which enables me to carry out my projects in the world, my body is an obstacle that I must overcome.  I may, for example, have to manually pick up my leg if I am to negotiate a small step, or pay exquisite attention to the way my body feels in terms of pain, fatigue, stiffness if I am to engage in ordinary activities.</div> <div>      With respect to severe chronic conditions bodily attentiveness becomes an integral aspect of the illness experience. With permanent physical impairment one must daily compensate for the body's dis-abilities and explicitly allow for its limitations. Even when there are lengthy periods of remission the chronically ill remain uneasily attuned to the way the body feels and moves -- always "on guard" for signs of an impending recurrence. Chronic illness thus transforms the body into a different kind of entity -- the "diseased body."  The "diseased" body remains always at the fringes of one's consciousness - the pre-condition of one's plans and projects.  One plans to do things "if" rather than "when" one can.</div> <div>      This forced attention to body is profoundly threatening because it forces one to recognize the symbiotic relation between body and self.   I don't just have a body, as I "have" a house, a car or a dog. In a fundamental way I AM my body. Whatever happens to IT necessarily happens to ME.  If I recognized nothing else when I was diagnosed with MS, I recognized that whatever was going on in the deep recesses of my central nervous system -- albeit unfelt, unseen, unstoppable - threatened totally to disrupt my whole existence.  It was not just that my future bodily capacities were questionable, but that all my projects, plans and relationships were now in jeopardy.</div> <div>      Bodily disorder also reveals that there is a dynamic relationship between our bodies and the surrounding world.  Illness is experienced in a multitude of ways as dis-ability, the inability to interact with and engage the world in ways that are meaningful to us. Problems  such as weakness, fatigue, difficulty breathing, paralysis in a limb, transform our relation with familiar objects.</div> <div>      For example, breaking a leg or spraining an ankle is a concrete experience of limitation and difficulty. If one is forced to use crutches, or has difficulty walking, a flight of stairs which was formerly unnoticed now becomes an obstacle to be avoided or climbed with effort. For the person with weakness or a tremor, a favorite cooking pot may suddenly be encountered as something that resists when one tries to lift it with one hand, a cup of coffee as an object that is hard to bring to one's lips without spilling the contents. In the actuality of everyday life surrounding space is always encountered as functional space - that environs in which we carry out our daily activities.</div> <div>      The familiar world also changes in that spatial dimensions shift. In the normal course of events, locomotion continually opens up space allowing one freely to move towards objects in the world. Illness and debility exert a centripetal force anchoring one in the Here. If I am in bed with the stomach flu or confined to a hospital room following surgery, I experience a concrete shrinking of my world (to the confines of my bed, my room, my house). In one's changed physical condition, one finds that objects and locations that were formerly regarded as "near" (the bathroom, the kitchen, the next door neighbor's house, the office) are now experienced as "far." The familiar involvements of everyday life -- the workplace, the social world of friends and colleagues seem a "world" away.</div> <div>      In the case of ongoing disorder this change in the surrounding world is an ever-present reality. For example, when I could walk the distance from my office to the classroom (about 30 yards) was unremarkable, as were the stairs that I climbed to reach the third floor of the building. As my mobility decreased, the office appeared "near" to the classroom on the way to the lecture, but "far" from it on the return journey; the stairs became an obstacle to be avoided, as much as possible, by using the elevator. Today, if I were to be without my wheelchair, the distance from the office to the classroom would appear immense - absolutely beyond my capacity to reach it. And the third floor is unattainable if the elevator malfunctions.</div> <div>      The dimensions of "high" and "low" also vary according to the position of one's body and the range of possible movements. From a wheelchair the top three shelves in the grocery store are too high to reach since they have been designed for shoppers who are standing up. For the person with a bad back, the floor is infuriatingly distant and impossibly low, if one has to retrieve a piece of paper that has fallen out of one's hand.</div> <div>             With ongoing disorder the change in spatial experience alters one's perception of the surrounding world. For instance, those of us who live with permanent disability necessarily come to view the world through the medium of the limits and possibilities of our own bodies. Since this is a world designed for the able bodied, one is always "sizing up" the environment to see whether it is accommodating for the changed body. I well remember that my first impression of the Lincoln Memorial in Washington was not one of awe at its architectural beauty but rather dismay at the number of steps to be climbed.   </div> <div>           And this morning when I first set eyes on the imposing structure of the Joslyn Museum of Art, my immediate reaction was to wonder how a person in a wheelchair would get into the building given the seemingly endless succession of stairs into the front entrance!  (As a friend commented to me recently, this change represents a loss of aesthetic sensibility.)      </div> <div>           With respect to the transformation of space, it is important to note that we not only act in space, we dwell in space. We all have spaces that are particularly meaningful to us -- the office where we carry out our professional life, the kitchen where we prepare meals for friends and family, the paths that we stroll along together, the bed where we share our most intimate moments. As our way of being in the world changes so there is a corresponding transformation in these most precious spaces -- a loss that is particularly felt with permanent changes in body. One of the challenges of chronic illness is to learn to dwell differently in the intimate spaces of one's life, as well as endeavoring to create new and meaningful ones.</div> <div>      This spatial transformation can be a source of great suffering since it denotes the shrinking of ones meaningful involvements in the  world. In chronic illness, the progressive dwindling of space also has personal  meaning in that it represents a series of markers with respect to where one  finds oneself on the journey that is one's illness.</div> <div>      Chronic bodily disorder affects temporal, as well as spatial experience. Not only are the body's natural rythms of sleeping, eating, working and resting disturbed, but the time it takes to do things -- get out of a chair, put on one's clothes, -- is necessarily prolonged. One is forced to give unusual attention to the present moment, to concentrate on what is required this minute.  This goes against the natural tendency that we have to focus our attention on the future -- on the next project, the next task.</div> <div>      The change in temporal experience can be extremely disruptive not only in the sense that one is necessarily "caught" in the present (unable to "get on with" things at the usual pace) but in the sense that the person with a physical incapacity is "out of synch" with the ablebodied. This difference in temporal experiencing affects one's relations with others. "What's taking so long?" others ask impatiently. (Think for example how difficult it is to communicate with someone whose speech is unusually slow or halting. One finds oneself desperately fighting the urge to hurry things up by interrupting and putting "words in their mouth.")</div> <div>      The significance of past, present and future may also change. In confining one to the present moment, preoccupation with the demands of illness engenders a loss of the future. Planned projects seem irrelevant or impossible. For those with progressively degenerative disease the future becomes not only problematic but intensely threatening --in this event the future may literally overwhelm the present, causing patients to give up </div> <div> present activities in light of future threat. I have known many M.S. patients who have abandoned life goals and projects simply because they received the diagnosis of M.S. and without regard to actual physical incapacity.</div> <div>       And the various losses associated with serious illness engender a loss of the past -- the activities one used to do, the self one used to be. In the case of diseases such as M.S., fear and loss are integral aspects of the illness experience which, if not directly addressed, can be equally as debilitating as physical dysfunction.</div> <div>      An intrinsic element of illness is uncertainty about what is going to happen. In chronic illness uncertainty is pervasive and ongoing. The patient often does not know when the next attack will occur, how long it will last, what effects it will have, nor what the day to day effects will be. Not surprisingly such global sense of disorder is often accompanied by anxiety about the future. In the case of progressively degenerative disease concern for the future is necessarily an intrinsic element of the illness. The truism "things could be worse" takes on a whole new meaning for those living with progressive disorders.</div> <div>      Changes in body not only transform the experience of space, they disrupt bodily identity. We all exhibit distinct bodily patterns (ways of walking, talking, gesturing) that are peculiarly our own. Altered patterns of movement, or changes in appearance, are experienced as alien, uncomfortable, unrecognizable. </div> <div>      For instance, in my own experience of neurological disease, I have found it difficult to identify with changed and changing patterns of movement. When I see myself on a home video, I experience a sense of puzzlement. I catch myself wondering not so much whether the body projected on the screen is my body but, rather, if the person in the video is really ME. However, if I see pictures of myself when I was walking, or leaning on a cane, I find it hard to remember how it was to be that person or, even, who I was when I moved like that.  (Interestingly, this loss of bodily identity is also experienced by those closest to the affected person.  Recently, on seeing an old  photograph which showed me standing up, my husband remarked wonderingly "Weren't you tall?" -- as if he, too, found it hard to identify me with the image of this "other" standing person.)</div> <div>      In chronic degenerative disease the parameters of disability and patterns of movement are constantly changing -- a reality that makes the adjustment to chronic illness unlike the response to acute disease or catastrophic trauma (not easier or more painful, just different). One has to define and re-define the self in light of new disability. Being the self "on crutches" is different from being the self who uses a walker," or the self who is in a wheelchair." And none are the same as being the self who navigated the world "on her own two feet."</div> <div>      Bodily change may have different meanings for the same individual at different points in time. The inability to walk has a different significance for me now than  it did when I first contemplated this loss of possibility as a thirty-year-old woman   who was used to "standing on my own two feet." And the meaning of this change is different for me than it is for my friend who was a marathon runner before being diagnosed with M.S.</div> <div>      Adjusting to an altered body image is made more difficult because we live in a culture that places inordinate value on appearance, promoting unrealistic ideals of "beauty" and physical fitness that inevitably devalue those with physical disabilities. As women in this culture we have a particularly hard time meeting this ideal of attractiveness, sexuality and youth.  </div> <div>      When university students were asked to draw associations for "woman" and "disabled woman," the associations cited for the two were very different.  "Woman" drew associations of worker (intelligent, leader, career), of sexuality, of mother or wife.  However, when asked to draw associations with "disabled woman,"  students described her in terms of dependence and impairment, of age, of despair (someone to feel sorry for, pity, lonely, ugly).  She was virtually never depicted as wife, mother, or worker by more than one hundred students surveyed.      When I ask my students to imagine how their lives would be different if they were in a wheelchair, female students invariably include the statement "I wouldn't be able to get a date."  In this connection acquaintances often say to me, "Aren't you LUCKY to have your husband."    This is not so much a reflection on my husband's character, as it is a not-so-oblique reference to my disability -- the perception being that my relationship with my husband is solely one of dependence.</div> <div>      When strangers observe that I am in a wheelchair, they make immediate judgements about me as a person. Most assume that I am dependent on others and unable to engage in professional activities. In perceiving that my legs no longer work, strangers also conclude that my intellect has been likewise affected. In my presence they address questions to my companion and refer to me in the third person. "Where would SHE like to sit? What would SHE like us to do with this chair? (This invariably happens when we go through airports. When we wheel up to the security barrier, the airport employee looks directly at me and then turns to my husband and says, "Can SHE walk at all? We now have a standard response. My husband says, "No, but SHE can talk!")</div> <div>      When I am unaccompanied people often act as if my inability to walk has affected not only my intelligence but also my hearing. When forced to address me directly they articulate their words in an abnormally slow and unusually loud fashion -- in the manner one might use to address a profoundly deaf person who is learning to lip read.</div> <div>      With respect to the interaction with others, I have found it interesting that social conventions with regard to the absolute control one exercises over one's body are also disregarded when one is in a wheelchair.  For example, when I am wheeling myself around a local shopping mall for exercise, strangers will (without my permission) start pushing my wheelchair, explaining they are "helping me." On one occasion in order to speed up the process of getting me from the backseat of a cab out onto the curb, a taxi driver simply picked me up with no warning and no inquiry as to whether I would like him to do so.  While I have no doubt that these actions are taken with the best of intentions, imagine how you would feel if a taxi driver simply picked you up, lifted you out of the cab, and set you down on the curb!</div> <div>      In disrupting body/world unity, as well as altering body image, illness represents the concrete loss of existential possibility. Symptoms derive their meaning from their effect on the person's ability to interact with the world and others. In curtailing the ability to pursue plans and projects, bodily disorder necessarily limits opportunities and disrupts the various roles that we occupy -- professional, lover, caregiver, student, mother, breadwinner.</div> <div>       In the case of acute illness, the loss of opportunity and disruption of role is temporary and, therefore, legitimized by others. The sick person is excused from the usual demands of work and family life on the grounds that he or she will resume these responsibilities as soon as possible. However, if illness is ongoing, the inability to fully resume one's taken-for-granted roles inevitably causes one to feel diminished in person, as well as in body</div> <div>      The disruption of role directly threatens self-integrity. This may be particularly the case in our culture where there is a great emphasis on the importance of "doing" rather than "being." That is a person's worth, more often than not, is judged according to his or her capacity to produce (to be useful) or the ability to achieve a certain professional status.  When we tell our children, "You can BE anything you want to BE," what we invariably mean is "You will achieve worth by DOING."</div> <div>       The emphasis on productivity, on the accumulation of material goods, on achieving a certain status, focuses our attention outwards on our involvements, our impact on the world. Consequently, as activities become circumscribed, as roles change, as projects for the future must be revised or abandoned altogether, the cultural emphasis on "doing" directly contributes to the sick person's sense of diminished self worth. I was interested to see that Christopher Reeve entitled his recent autobiography "Still Me" which illustrates the profound sense of loss of identity which occurs at the onset of serious disability.</div> <div>      With regard to the disruption of role, chronic illness is never simply a disorder that affects a particular stricken individual. It strikes equally at family members and other intimates. Those closest to the chronically ill patient must share in the burdens imposed by the illness, provide ongoing assistance and care, and often drastically revise their own life plans to accommodate the illness. My husband and I together live a life with multiple sclerosis. His life has been -and continues to be - thrown into disarray along with mine. For the past twenty three years he has been my greatest ally; a catalyst for healing. In many instances, however, serious illness strains and permanently shatters the cohesiveness of intimate relationships. </div> <div>      No discussion of chronic illness would be complete without acknowledging its emotional component.  Ongoing changes in body and disruption of role are often accompanied by feelings of loss, grief, guilt and shame. It is important to recognize that these responses are non-rational and reflect the person's struggle to re-define the self in light of a changed way of life.  </div> <div>      Increasing loss of function is often accompanied by feelings of guilt over the things one can no longer do, the roles one can no longer perform. In this culture we place overwhelming emphasis on autonomy, on being able to "stand on your own two feet", make your own way.  Consequently, the need to request help from others is perceived as weakness, as burdensome.  Even after 25 years I still struggle with feelings of guilt over things I can no longer do.  Although I realize that, given my bodily limitations, it is impossible for me to carry out certain tasks, I have the sense that I am failing to do as I ought. </div> <div>      Similarly, feelings of shame inevitably accompany the changes in body that elicit negative responses from others.  Every time I have had to adopt a new way of getting around the world, first a cane, then crutches, then walker, and finally a wheelchair, I have experienced feelings of shame.  I remember when I first started using my battery operated scooter, I refused to ride it into the classroom because I thought my students would think less of me if I was in a scooter.  So for one whole semester I rode it down the hallway, parked it outside the classroom, and staggered into the room hoping I would hit the lectern before losing my balance. This was ridiculous, of course, I should have known better.  But at the time it was part and parcel of my sense of diminishment.  </div> <div>      The significant losses occasioned by diminishing physical abilities, the interruption of social activities, the disruption of important personal relationships are necessarily accompanied by feelings of grief.  And often the chronically ill person experiences a profound sense of anger and frustration at the inexorable nature of the illness - having to deal with it day after day, with no end in sight and the apparent inability of medical science to resolve one's predicament.</div> <div>      In this respect an important dimension of debilitating illness is a type of fatigue that I shall call existential fatigue. Because of the effortful nature of worldly involvement, bodily disorder limits one's desire and capacity to engage the world in accustomed ways. When the simplest of tasks (such as getting out of bed, getting dressed, taking a shower) require inordinate effort, there is a powerful impulse to withdraw, to cease doing what is required. The ability to act in the world is not merely a matter of physical capacity. Acting requires the exercise of will. In chronic illness existential fatigue (loss of will) can be quite as debilitating as can physical fatigue.</div> <div>      In sum, then, when we think about the personal challenge of chronic illness, we need to think about much more than simply the physical symptoms: we need to recognize the impact of the diagnosis, the difficulties of living with an illness that persists over time, the changed relation with  body and the surrounding world, the disruption of time and space, the threat to the self, and the emotional aspects of all these changes.  </div> <div>      I now want to shift the focus of my discussion -- to situate the personal experience within the wider context of Western medicine and our society in order to explore some of the ways in which this wider context shapes the personal experience.   </div> <div>      There is a real sense in which the focus of Western scientific medicine increases the experience of loss of control that is part and parcel of chronic illness.  The predominant focus of contemporary medical care and biomedical research is directed towards acute disease with a corresponding emphasis on high technology treatment oriented toward cure and full restoration of function.  Given this focus the primary goal is to eradicate disease, thereby returning the sick person to a former state of health and well-being (a state that is characterized by living well without the presence of illness).  Disease is the enemy to be defeated and banished from the patient's body by whatever technological or pharmacological means are available.</div> <div>      As laudable as it may be, this focus is problematic in the context of chronic illness where disease cannot be conceived as a temporary threat.   Rather disease is an intrinsic element of one's being, a permanent feature of living.  The emphasis is not so much on confronting and vanquishing disease as it is on accepting bodily limitation, coping with disorder, and learning to integrate illness into one's life in an acceptable manner.  Consequently, the focus must shift from cure of disease to enabling the patient to live well in the face of  (rather than in the absence of) physical or mental disorder.</div> <div>      In order to achieve this shift in focus an important task is to re-define the prevailing conception of health.  If wellness is equated with absence of disease or disability, a sharp distinction exists between those who are "well" and those who are "sick."  In our society "health" is equated with complete physical and mental well-being - a view that carries with it the expectation that cure, good health and happiness are a personal right.  Given this view illness is an affront.  There is the clear conception that physical incapacity and wholeness are incompatible.  </div> <div>      This ideal of what it means to be "healthy" makes it difficult for the chronically ill to live well in the face of illness, as well as fostering unrealistic expectations about the power of medicine.  The chronically ill find themselves in a "double-bind".  Negative societal attitudes towards illness and disability not only diminish self-esteem making it hard to accommodate to loss of bodily function, but such attitudes cause concrete hardships in terms of the disruption of personal relationships, loss of employment  opportunities, inability to obtain health insurance, and so forth.</div> <div>      Moreover, this conception of "health" limits the goal of medical intervention causing patients and medical professionals alike to focus on curing disease as the overriding goal of therapy.  The inevitable failure of such an approach (inevitable in the sense that there is no "magic bullet," no possibility of a complete restoration of function) leads to disappointment, frustration, and helplessness.  Chronically ill patients often feel "abandoned" by the medical profession since they are told that "nothing more can be done."  Moreover, if cure is the goal, inability to cure is perceived by medical professionals as failure - a perception that often leads them to withdraw from the dying and incurably ill.  </div> <div>      Most importantly, the bias towards curative medicine gives patients and health professionals alike the erroneous impression that therapies aimed at amelioration rather than cure of disease are a kind of "fall-back" position to be adopted only when all efforts to bring about a cure have failed.  Given this view the chronically ill may find themselves in the paradoxical situation of living with a disease that is adequately controlled and causing minimal life disruption but, at the same time, being dissatisfied because their disease is not cured.  Moreover, the focus on cure of disease as the overriding goal distracts attention from the need to address the life disruption that pervades routine daily activities, personal relationships, family life, work responsibilities, and social involvements.</div> <div>      The sharp distinction between those who are sick and those who are well also impacts the priorities of routine clinical care.  Once one has moved from a state of wellness to a permanent state of sickness, the focus of care is differentiated depending on whether one finds oneself on one side of the line or the other.  For example, the prevention of disease is recognized to be an important goal in the care of those individuals who are not yet sick or disabled.  Health professionals are encouraged to help patients stay well and to educate them in the best means to do so before injury, disease and disability have occurred.  </div> <div>      Once persons become sick, however, more often than not it is presumed that other goals are more important.  Yet disease prevention and maintenance of physical well-being (as distinct from symptom management or traditional forms of rehabilitation) are equally important in the care of the chronically ill.  Ironically, lifestyle behaviors that are targeted as a means of health promotion/disease prevention for those who are not yet sick - such as losing weight, exercising, attending to nutrition, taking steps to control drinking - are especially important in the context of chronic illness.  Physical disability makes it more difficult to engage in physical exercise, the pressures of dealing with illness may exacerbate problems with alcohol and drugs, and the chronically ill and elderly may be especially prone to disregarding nutrition.  Yet these aspects of care are not routinely emphasized.</div> <div>      The de-emphasis on health maintenance/disease prevention for persons with physical disabilities is reflected in the barriers that exist in the clinical setting.  For example, although monitoring a patient's weight is a routine aspect of health care, I have never visited a doctor's office where there is a platform scale.  Without such a scale it is impossible to weigh anyone who uses a wheelchair and difficult to weigh those who have trouble standing without support.  Accessible examining tables are equally rare - even in the office of specialists who routinely deal with patients with disabilities or who care for elderly patients.  (The only one of my physicians who has an accessible examining table is the gynecologist/obstetrician and he has it for pregnant patients.)  </div> <div>      Wheelchair accessible restrooms in doctor's offices are the exception rather than the rule even though providing a urine sample is a fairly routine requirement.  A recent national survey showed that women with severe disabilities are less likely to receive annual pelvic exams than able-bodied women, and 23% of women with spinal cord injuries surveyed reported that it was impossible to have a mammogram either because the equipment could not be positioned for them or because there was no accessible room for mammograms.   The women also reported that if they were accompanied by another person, more often than not the doctor addressed questions to the companion, rather than speaking to them directly.</div> <div>      Traditional notions of "health" stress bodily and mental wholeness and the absence of malfunction.  This makes it difficult, if not impossible, for the chronically ill to embrace the notion that it is possible to be "healthy" (whole) even if cure of disease is not a possibility.  An important way to redefine the notion of "health" is to focus on personal  as opposed to bodily wholeness.  Wholeness at the personal level has to do with the ability of the person to function well.  By functioning well at the personal level, I have in mind such things as being able to engage in activities that are meaningful, sustaining important relationships, and retaining a sense of personal integrity.  </div> <div>       The prevailing biomedical model of illness and the overriding focus on physical pathology gives priority to the well functioning of the physical organism -- with the assumption that if the body functions well so does the person.  This assumption is deeply problematic.  For instance quantitative measurements of neurological function and disability, in and of themselves, do not convey whether or not a patient with neurological disease can function well at the personal level.  In my own case, functioning well at the personal level does not depend on whether or not I can walk (although it does relate to my ability to manage my illness in such a way that I can pursue those projects that are meaningful to me).  Human flourishing cannot, and should not, be reduced to bodily wholeness. </div> <div>      Indeed, focusing primarily on assessments of physical functioning as the most accurate measure of wellness can paradoxically disrupt the task of functioning well at the personal level.  Patients and medical professionals alike may be tempted to pursue medical interventions that are extremely disruptive of the patient's life and which result in minimal improvement of bodily function</div> <div>       I  learned this lesson personally when undergoing a course of chemotherapy in an attempt to slow down the progression of my disease.  The treatment was worse than the illness.  Monthly infusions of cytoxan caused nausea, vomiting, and prostrating weakness for three weeks out of four.  After four months I chose to discontinue the treatment on the grounds that it totally disrupted my life.  Although my neurologist supported my decision, he voiced disappointment in pointing out that tests indicated a slight improvement in my ability to lift my right leg.  However, for me, this minimal gain in physical function was not worth the erosion in my quality of life -- especially since research studies indicate that such  improvements are not sustained in the long term. </div> <div>      Weighing the benefits and harms of treatment is more difficult for those living with chronic illness.  If one has an acute disease one knows that the disruption of treatment will be shortlived with an end result of cure.  Consequently, the certainty of future benefit enables one to "put up with" temporary discomfort -- even if it is extreme.  However, when future benefit is uncertain and  disruption is ongoing, patients and health professionals must take seriously the impact of therapy on the quality of life.  </div> <div>      Paying explicit attention to the relief of suffering is central to the goal of promoting personal wholeness.  As the issue of assisted suicide has shown in a graphic way, suffering is NOT to be equated solely with pain or clinical distress. Suffering occurs when a personal life (and not just a physical body) disintegrates.  Several of those who committed suicide with Dr. Kevorkian's assistance were not in severe pain, nor were they terminally ill.  Rather, they suffered from chronic, progressively degenerative neurological diseases where such losses as loss of dignity, loss of freedom to act, loss of important relationships, loss of purpose, and the inability to cope rendered life unbearable.   </div> <div>      As a multiple sclerosis patient I am particularly saddened that several found it impossible to go on living with M.S.  Their deaths raise numerous questions for us as a society -- questions such as: How can we better identify those at risk?  How can we intervene and address the life circumstances that cause despair?  Why have more women than men killed themselves with Kevorkian's assistance?  Are their societal pressures (such as role expectations) that cause women to feel they are a particular burden if they are severely incapacitated?  What are the sources of suffering that make life unbearable for those with advanced neurological disease?</div> <div>      If the issue of assisted suicide has taught us anything, it should alert us to the fact that life with dignity is as important an issue in the context of severely debilitating illness as is the issue of death with dignity.  As a society we must give explicit attention to creating clinical and social circumstances where the humane management of severely disabling illness is likely.  </div> <div>      One of the greatest fears of the elderly and persons with debilitating illness is that they will eventually be "warehoused" in an institution where a life with dignity is impossible.  As a person living with progressive neurological disease my greatest fear is not unbearable pain, nor even death.  Rather, I am most afraid that my illness will progress to a point where neither I nor my family will be able to cope.  If that day comes I fear that I may well have to be institutionalized and depend for my every need on the assistance of people who do not know me.  </div> <div>      An important priority is to institute programs that assist the chronically ill, the elderly, and the disabled to live out their lives in the familiar surrounding of their own homes, if possible, or that provide communal settings that are conducive to care.  As we have learned to our benefit, hospice care is a wonderfully humane alternative for the terminally ill.  However, access to hospice is restricted to those with end-stage terminal illness.  Consequently, persons with severely disabling illnesses (or those whose prognosis is uncertain) do not have this humane alternative available to them. </div> <div>      In revealing the importance of personal wholeness as an integral component of "health", chronic illness and disability remind us of the extent to which societal attitudes, social practices and public policy play a part in either promoting, or restricting, health.  As an example, the experience of physical dis-ability is not simply the result of bodily malfunction.  It is also intimately related to the way in which the surrounding world is physically constructed.  </div> <div>      Until recently all our architecture was designed exclusively for people with working legs.  This means that, for a person who uses a wheelchair, a routine invitation to a restaurant, a theater, someone's house for dinner, a business meeting, a friend's apartment, or a shopping excursion, requires that one first inquire whether or not one can get in and out of buildings, if there is adequate parking, if there are ramps and elevators, if one is blocked by stairs (either into the building or inside it), if one can get in and out of restrooms (and so forth). </div> <div>       I remember a particularly frustrating evening when I was attending a professional meeting in another city.  A colleague and I wanted to walk a very short distance to a nearby restaurant.  However, we were unable to get more than a block from the hotel in any direction.  There were no curb cuts which would enable me to ride my scooter off one sidewalk and on to another.  The accessibility of the restaurant itself was not an issue.  I couldn't get to it. </div> <div>       I remember also speaking at a university in California.  My lecture was scheduled in one of the large Biology lecture halls.  The problem was that to get to the front, one had to go down a long series of steps from the back of the hall.  When my colleague inquired whether the room was accessible for wheelchairs, she was told that it was.  There was seating for people in wheelchairs at the very back, at the top of the stairs  -- the perception being that no-one in a wheelchair would ever need to be in front of the class.</div> <div>      With respect to the difficulties I encounter on professional trips, I should note that  I have visited the kitchens and laundry rooms of many major hotels on the way to otherwise inaccessible conference rooms!</div> <div>      When I ask my students to imagine how their life would be different at Baylor if they had to negotiate space in a wheelchair -- they typically discover that they would be unable to visit friends (because many live in upstairs apartments with no elevators), they would not be able to work in their chemistry or biology labs (because the tables are too high), they would have difficulty in the dormitory cafeterias where the buffet is beyond reach, they could not get into their rented houses because there are steps into the front door, they would be unable to get into their bathroom (because it is simply a fact of life that the standard bathroom door is too narrow for a wheelchair), they would be unable to work at their parttime jobs, they would be hard pressed to do research in the library since books are inaccessible on the upper shelves, and they would have to carefully plan how they would get from class to class within the ten minute class changing interval because not all entrances to buildings are accessible and they typically take short cuts that would be impossible with a wheelchair. </div> <div>      One student even noted that she would be unable to wear her particular brand of jeans because getting into them requires her to jump up and down! </div> <div>      With respect to these mundane observations it is vital to recognize that the surrounding world can be restrictive not only in a physical sense but, more importantly, in the sense of restricting existential possibilities. If there was no ramp into the building where I teach, or a curb cut that allows me to get on to the sidewalk in my scooter, or an elevator to get to the third floor, or an accessible restroom, I would be unable to teach in the philosophy department.  And if I did not have the economic means that allow me to own a van with a wheelchair lift, and a scooter, and to build a ramp allowing me access into my home, I would be unable to live an independent life.  And, obviously, these  economic means are - to a large extent - dependent on my access to employment (so it is a vicious circle).</div> <div>      Obviously, when properly enforced, such social legislation as the Americans With Disabilities Act can do much to open up public space and to increase opportunities for personal flourishing.  However, equally important is a social commitment to celebrate, rather than stigmatize, physical difference.  It has been my experience that the passage of the ADA has done little to change attitudes towards those of us with disabilities.  On a recent professional trip to New Orleans, for instance, a friend visited a very well known restaurant in the French Quarter  to see if it was accessible for my wheelchair.  The building was accessible.  However, an employee of the restaurant made it very clear that people in wheelchairs were not welcome in their establishment and suggested we would be more comfortable somewhere else. [ My friend who was making the inquiry happened to be an amputee and this may have made the employee doubly uncomfortable.]</div> <div>      More common than such overt rejection is an attitude of indifference with respect to the need to remove physical barriers -- even when such changes would not be costly.  I remember a visit to a yogurt shop in a local mall.  There is  access to the counter but the eating area is up on a platform which requires climbing two steps.  I pointed out to the employee that they need a ramp so that people in wheelchairs can eat there. "Oh," she said, looking me straight in the eye, "Nobody in a wheelchair ever comes in here to eat."  (I thought of engaging her in a philosophical discussion of which came first the chicken or the egg but decided against it). </div> <div>      With respect to societal attitudes towards persons with disabilities, I would like to suggest that it is also important to recognize the extent to which projects aimed at enhancing "healthy human capacities" such as the Human Genome Project reinforce the notion that "health" is synonymous with complete physical and mental integrity and divert attention from the societal barriers, policies, activities, that prevent persons from living well in the face of illness.  In the cultural imagination, such projects imply that given enough knowledge all diseases can be eradicated.  It is vital to insure that such projects do not unwittingly further stigmatize those with disabilities and cause discriminatory practices  against persons with incurable disease.  This is not to say that we should not engage in such projects.  It is simply to point out that there is an inevitable tension between pursuing the end goal of "perfect" health and, at the same time, affirming the lives of those who do not meet this ideal.</div> <div>      Thinking carefully about the personal, medical and societal challenge of chronic illness and disability seems particularly important at a time when chronic disorders represent the major source of morbidity and mortality in our society, when the population is aging with most individuals over sixty experiencing at least one chronic disorder, and when there are a growing number of what Arthur Frank has called "members of the remission society" - people who are effectively well but can never be cured (for example, those who have had cancer, those living in cardiac recovery programs, those with mechanical body regulators such as pacemakers, and those who live with permanent disability).  </div> <div>      There is a great deal of truth to the notion that being able-bodied actually means being "temporarily able-bodied."  The probability is that we will all  experience chronic illness in our own lives.   The task of learning to live well in the face of illness is one that challenges us all.</div> <bR> <div> S. Kay Toombs, Ph.D.</div> <div> Associate Professor of Philosophy</div> <div> Baylor University</div> <div> POB 97273</div> <div> Waco, Texas 76798</div> <bR> <div> Email: 73651.3120@compuserve.com</div> <bR> <div>   Adrienne Asch and Michelle Fine, "Introduction:Beyond Pedestals," in Women With Disabilities, ed. Michelle Fine and Adrienne Asch (Philadelphia: Temple University Press, 1988), 15.</div> <bR> <div>   With respect to research aimed at health promotion/disease prevention, it is worth noting that less than seven percent of  NIH's $13.1 billion budget request for 1998 will go into behavioral research - about the same percentage as its current budget despite the fact that behaviors are asociated with half of all deaths in the U.S. each year (Figures quoted in Emerging Issues in Health Care, Vol. 2, No. 2, March-April 1997). </div> <div>  </div> <div>   Surveys carried out by Nosek, et al.  Center for Research on Women with Disabilities, Baylor College of Medicine, Houston, Texas,  1992, and 1995.</div> <bR> <div>   Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: The University of Chicago Press, 1995), 8-13.</div> <bR> <bR> </td> </tr></table></body>