BEING DISABLED DOESN'T MEAN BEING HANDICAPPED By Alma C. Yearwood person. as having a handicap, rather than the environment imposing it. Consider a woman with a broken This distinction between hand- leg struggling to get up on a curb. icap and disability is an important Or a quadriplegic person confined one for two reasons. First, it reflects to a wheelchair, feeling strongly the way in which estimates of the about an issue but unable to "stand numbers of people affected are up" for emphasis. Or a young man made. "The National Center for with multiple sclerosis who tires Health Statistics observed that 'at easily but looks so well that his least 67,900,000 Americans suffer complaints of fatigue go unheeded, from limiting conditions that would Are they disabled or are they handi- benefit from a more accessible en- capped? vironment.' That figure does not What are the uncomfortable include an additional 20 million feelings that are generated by the plus Americans over 65 with mobil- above scenes? As nurses, are our ity limitations resulting from the attitudes constructive or do they aging process"(1). serve as negative barriers toward Second, the distinction repre- the disabled patient we care for? sents the importance of barriers These questions are posed with the that inhibit the person's ability to recognition that there are no right adapt. The following definition un- or wrong answers, but areas that der the title "Handicapped Per- need to be explored. son," further illustrates this point. Curtis Brewer is one of the first "Characteristics of the built envi- people I met in my position as edu- ronment, rather than the degree of cational programs associate of the disability, determine whether or National Multiple Sclerosis Soci- not a person is handicapped, A ety. Mr. Brewer is the executive handicap occurs when a person en- director of Untapped Resources, counters an environmental barrier Inc., a free legal service for disabled which prevents or inhibits activities people. He is also quadriplegic. I of daily living. For example, narrow met with Mr. Brewer to determine toilet doors, not affording access to how he had learned to cope and to a person in a wheelchair, will pre- learn about the problems of the dis- vent the employment of that person abled clients he represents. He em- in a building; or a child, considered phasized, "Being disabled doesn't able-bodied, is handicapped when mean being handicapped. You don't stranded in a malfunctioning eleva- have to be handicapped, which is a tor of a high-rise apartment build- social term, because you have a dis- ing because the emergency button ability, which is a limit in your and telephone are out of reach"(2). physical capacity." It is my responsibility to either I was struck by this point, develop or to assist our 140 chap- since the two words are often used ters in programs for professionals, interchangeably. However, they are patients, and the lay public, so I worlds apart. We often refer to the have to be especially sensitive to the impact of the words that are used and sensitive to the barriers that a disabled person faces. When MS occurs, the public often thitiks of the inaccurate image of a helpless cripple in a wheel- -------------------------------------------------------------- ALMA C YEARWOOD, RN. M.S. is the education- al programs associate for the Multiple Scle- rosis Society, New York. N.Y., and a doctor- al student at Teacher's College, Columbia University, New York. --------------------------------------------------------------- chair. This image is invoked each with the focus on seeing a providers, we must assist the MS time a label "handicapped" or "dis- learn to cope with illness. patient in identifying his or her abled" is placed on a person. It is important that we become optimal achievement level and in Nurses and other health care pro- aware of the thoughts and feelings exploring ways to obtain it. This viders are not exempt from harbor- of the disabled person/patient. requires creative problem solving ing, if not fostering, this image in Some are angry, some feel misun- on the part of the nurse as well as our attitudes and behavior toward derstood, almost all feel inisrepre- the patient. It also requires a focus the disabled patient in the hospital sented. Most do not like the terms on hope-because despair is the or the disabled person we encoun- "handicapped" or "patient." As one worst disability of all. The impart- ter on the Street. man Wrote, "And when the patient ing of hope to achieve realistic This image may be borne out walks out of the doctor's office, he goals can assist the patient in learn- of misinformation. Many of us is no longer a patient. In the world, ing to live life to the fullest. learned about multiple sclerosis di- for better or worse, he is a person- For example, Curtis Brewer dactically, with a focus on the albeit an MS person." became paralyzed some 20 years extremes of pathologic distur- Thus, in fulfilling our role as ago. However, during that time he bances, rather than experientially, concerned, informed patient care has completed his undergraduate work, some work in public adminis- ------------------------------------------ still there, and my will is still there, tration in graduate school, and fi- Where to find Help but because of my situation, it is nally law school. "For most people The National Multiple Sclerosis So- consulted to a lesser degree. Deci- law school is demanding. For Mr. ciety has 140 chapters nationally sions must be made for me now that Brewer, it required every ounce of that are listed in the local telephone were formerly left to me to make. energy he had. In class he had directories, or the National Head- Consequently, what few decisions special prop on which his books quarters at MS East 42nd Street, are left for me assume an unnatural and papers were spread out so that New York. N.Y.. 10017, can be con- importance. When the ability to he could follow the lecture. A class- tacted for more specific inforrna- make decisions goes, we work in mate . . . sat next to him each day tion. There is also an International inverse ratio-the smaller the deci- and turned the pages in his books Federation of Multiple Sclerosis So- sion, the larger it looms in impor- during the class period(3)." cieties. I asked him what we need to For information on self-help tance and, incidentally, the greater do to be more effective. "You need groups that provide support for pa- the frustration if it is not exe- to be human, to be reasonably free tients and families as they learn to cuted." adapt to their illness, the National Finally, we must recognize the of attitudinal sets, and to be able to Sell-Help Cledringhouse, 33 West stages of adaptation MS patient go examine your own attitudes. Most 42nd Street, New York. N.Y., 10036, through, as identified by Matson of all, in caring for the person, don't is another valuable resource. and Brooks, who studied the adjust- rob the 'self' of responsibility for ------------------------------------------ ments that MS patients make. self-improvement. And don't forget I can do", one man said pointedly, Because the diagnosis of multi- that shared experiences with other "not told all the things I can't." ple sclerosis is a difficult one to disabled people are extremely im- It is also important that the make, and is usually made after the portant." person make decisions whenever patient has experienced symptoms At the New York City Chapter possible. An MS patient living in a scattered throtigh time and place, of the National Multiple Sclerosis Canadian residental care center the reactions of the newly diag- Society, I listened to the concerns elaborated on the feelings in a letter nosed patient may vary from total of the participants and saw the way she entitled "An Open Letter to my disbelief to relief at finally knowing in which they supported each oth- Nurses." "But at least you can what is wrong. er. They are all bright, articulate make decisions for yourselves, and Usually, however, the first young adults with varying physical this is where we differ the most. stage is denial The patient may limitations. What they share in Please become aware of the few I state, "It's not true, it can't be hap- common is the diagnosis of multi- make. The last identifying charac- pening to me, there must be some ple sclerosis, their anger at society teristic, that makes you you are mix-up." Some attempt to conceal in general, and, sometimes, at your signature, your fingerprints, symptoms and seek an authority to health care professionals specifical- and your will. My signature is help deny the diagnosis. ly. "I need to be helped to see what almost gone, my fingerprints are The second stage of resistance is marked with a sense of "It won't - significant barrier. The principles get me down," as the patient at- set forth in "Guide for Helping tempts to find the cure and the Alcoholics and Their Families" are treatment. useful for educating the nurses who Affirmation is the stage in often must grapple with their nega- which the patient, is learning to tive feelings toward the patient accept help, is starting to say, "I while required to provide care un- guess I have to face it" der frequently frustrating circum- Finally, the patient reaches a stance(5). It is clear that the dis- stage of integration where there is abled patient needs empathic, goal- recognition and acceptance that he directed care that focuses on what or she is not the same as before, but is possible in the future rather than can continue to live. The patient is what has been lost in the past. The able to say "I know it's there, but I highlights of these principles are as don't think much about it." follows: Although the problems of the 1. Be sure of your own attitude newly diagnosed person might toward disability, dependency, and seem especially acute, adaptation the disabled patient. Disability rep- to MS never stops and is, in fact, a resents a physical, mental, or com- lifetime process. The patient admit- municative limitation that the pa- ted to a hospital with an exacerba- tient will need to adjust to and cope tion, or even for a different prob- with. Dependency represents reli- lem, will also need emotional sup- ance on others for care and support port. while maximizing the fullest poten- All of these MS persons are tial possible. asking for understanding and stip- 2. Approach the disabled per- port so that they may live their son with humility. Huinility means lives to the fullest. It is imperative without medical vanity and arro- to recognize that negative or indif- gance and in recognition that we do ferent attitudes of health profes- not have all the answers; instead, sionals and volunteers represent a that we are willing to become Involved in an instructive, collabo- rative relationship with the dis- abled person that we encounter. 3. Assist the disabled person in projecting short-term goals based on what is, realistic. 4. Remember that the disabled person is likely a part of a family that may also be in need of help. 5. Get acquainted with the per- sonal and community allies of the disabled person. References 1. American Automobile Association. The Handi- capped Drivers Mobility Guide, New York The Association 1978, p. 4. L Illinois (State) Capital Development Board Ac- cessibility Standards Illustrated, Springfield, Ill., The State. June 1978, p.2. 3. Rockwell, Winthrop. Curtis Brewer can do nothing for himself, Todays Health 53:30-35ff. Dec. 1975. 4. Matson R.R., and Brooks, N. A. Adjusting to Multiple Sclerosis: an exploratory study. Soc. Sci.,& Med: 11245-250, 1977. S. National Institute on Alcohol Abuse and Alco- holism. "Guide for helping alcoholics and their families." NIAAA Newsletter, April 1, 1975. ------------------------------------------------- The authors in this section who are associ- ated with the National Multiple Sclerosis Society wish to thank Bard Lindeman, the society's science editor, for his help in pre- paring their articles. -------------------------------------------------