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Improving Communication With the Physically Disabled
Improving Communication With the Physically Disabled By BARRY N. EIGEN
The trend toward mainstreaming physically disabled persons into society is particularly significant for the pharmacist because of the special role he or she plays in providing health care services. In addition to the responsibility of dispensing medication and providing clear patient . consultation, the pharmacist is often involved in the sale and rental of equipment and supplies for home health care. Many pharmacies carry canes,
©©[Q]J,[Q]JffiwD©fflilii®w~
Tim @ilili@IT
YD'Jwumlmf) Barry N. Eigen is president, chief executive officer and cofounder of Sickroom Service, Inc., 728 North 7 Street, Milwaukee, WI 53233. Sickroom Service is a national organization of pharmacists specializing in the rental and sale of medical equipment and supplies for home health care. Eigen has served as a member of the Wisconsin Governor's Committee for People with Disabilities and the executive committee of the National Spinal Cord Injury Association as well as chairman of the Southeast Wisconsin Regional White House Conference on the Handicapped. Currently, he serves on the board of directors of the Easter Seal Society. American Pharmacy Vol. NS22, No. 10, October 1982/549
crutches, walkers, wheelchairs, hospital beds, and other items needed by persons with temporary or permanent disabilities. It is therefore essential that the pharmacist learn to avoid common errors and achieve a comfortable and clear manner of communicating with disabled patients. Chances are, however, that you may be unsure how to do this. Unless you have had a great deal of involvement with the physically disabled community-as a pharmacist or as a member of local organizations dedicated to serving the needs of physically disabled people-you may not know what the most common errors are. Unfortunately, pharmacists are not alone, since uncertainty and the general lack of knowledge about effective communication with disabled persons goes back to the beginning of our dealing with people with physical disabilities.
Attitudinal Barriers A mere century ago, people with physical disabilities were associated with witchcraft and sorcery. Physical deformities were regarded as unnatural, and the disabled person was often shunned by the rest of society. One of the first major breakthroughs in the social emancipation of disabled individuals came in Victor Hugo's The Hunchback of Notre Dame, which presented an entirely different image of a physically disabled person. Written in the early
1800s, Hugo's portrayal of a severely disabled person as a sensitive and caring human being illustrated the capability of a person with physical disabilities to experience life and its challenges much the same as any other human being. In more recent times, the effort made to hide former president Franklin D. Roosevelt's use of a wheelchair by photographing him only when standing on braces behind a podium or sitting in a regular chair is an example of most people's thinking in regard to the abilities of disabled persons. It was generally not acceptable for a person to have a physical disability and hold a position of power. Today, "possession" and "witchcraft" are terms that few if any people would think of associating with a physical disability. Still there are subtle and sometimes overt forms of discrimination--commonly referred to as "attitudinal barriers"-that exist and often become apparent when able-bodied persons attempt to communicate with a disabled person. The major reason is that most able-bodied individuals have had little exposure to people with physical disabilities. Although the physically disabled have always been a part of our communities, they have been largely ignored.
Increasing Visibility Generally speaking, the vast majority of us do not communicate with physically disabled persons on a day-to-day basis, whether socially or in the work environment. In addition, the news and entertainment media have helped perpetuate the "invisibility" of this growing segment of our population. Television, movies and print media offer little in the way of role models from which to choose when communicating with a physically disabled person. With some notable exceptions-among them the "Ironsides" television series featuring Raymond Burr as a paraplegic police chief; "Longstreet," a television program in which James Franciscus portrayed a blind investigator; and "Coming Home," a recent movie depicting the life of a paraplegic 37
Vietnam veteran as played by Jon Voight-people with multiple sclerosis, cerebral palsy, hearing or visual impairments, paraplegia, quadriplegia, and other physical disabilities are noticeably absent from the world created for us by producers and writers. Today, however, physically disabled people are assuming more active roles in society. They are a more cohesive group, aware of their needs and right to be part of society. And they are no longer closeted away at home. Instead, they are working to increase their visibility by forming consumer advocacy groups to generate public awareness concerning the special needs of the physically disabled on issues such as securing an architecturally free environment, access to public transportation, and equal educational opportunities. They are much more mobile than their stereotypes and often capable of getting around independently. For instance, it's a common misconception that all people who use wheelchairs never go out alone, and it is equally incorrect to assume that all wheelchair users need to be transported by some public conveyance or by a friend in an automobile. Many paraplegics whose lower bodies are paralyzed are able to drive their own cars by using hand -operated controls, as are quadriplegics who suffer mobility limitations in all four extremities.
Furthermore, physically disabled people who use wheelchairs view their wheelchairs differently from the majority of able-bodied people. Instead of seeing himself as being confined to a wheelchair, a person with a physical disability regards his wheelchair as a means of mobility. Many physically disabled people would say that the real limitations they experience result from society's physical and psychological barriers.
Treating the Disabled The pharmacist who has had little experience dealing with physically disabled people or who feels apprehensive about communicating with them is likely to ask if they should be treated differently from other patients and, if so, how? When communicating with a physically disabled person, the
point that should be uppermost in the pharmacist's mind is that a person who has a physical disability is a person-like anyone else. A physical handicap should not be associated with a mental disability. Too often we assume that the slow or slurred speech that sometimes results from cerebral palsy, multiple sclerosis, laryngectomies, strokes, head injuries, hearing impairments, or other disabilities signals an impairment in thinking ability. This inaccurate association of a physical and mental disability is, perhaps, the most common error inhibiting good communication. Another common error that impedes effective communication involves the questions of when and how to offer physical assistance. Too often, when we see a person in a wheelchair struggling to get through a door or over a threshold, we rush to help without considering that the person may not want or need any help. Similarly, when we see a blind person waiting to cross the street, our first inclination may be to take the person's hand and lead him across. Unfortunately, this kind of behavior, however well-intended, diminishes the integrity and independence of the disabled person and does not set the stage for good pharmacist-patient communication. In situations like these, offer assistance only when asked to do so or if the need seems obvious, without overdoing it or insisting on it. Push a person's wheelchair only after asking whether a push is wanted.
Photos by Collins. courtesy of S1ckroom Serv1ce. Inc
38
American Pharmacy Vol. NS22, No. 10, October 1982155
important to provide complete and unhurried attention. The patient with a physical disability, just like any other customer, will know when a pharmacist is exasperated and doesn't care to give the time and information needed. And, like any other customer, persons with physical disabilities are likely to become angry . and dissatisfied and may take their business elsewhere. Communication should be encouraging rather than correcting. Instead of talking for the person who has a speech impairment, the pharmacist can allow the person a chance to "fill in the gaps." If necessary, the pharmacist can ask questions that require short answers or a nod or shake of the head. When communicating with a person who has a hearing impairment, messages should be spoken calmly, slowly and distinctly. Using gestures and standing with the light facing him will aid the pharmacist in communicating with the patient. If it seems that the patient does not fully understand, the pharmacist can also communicate by writing notes. Finally, when greeting a customer with severe loss of vision, it is helpful and considerate for the pharmacist to identify himself and any other people who happen to be with him, using the person's na1ne when talking as a clue to whom the conversation is directed.
Nonverbal Messages
When moving up or down steps, ramps or other obstructions in the pharmacy, ask the person how to proceed. If a blind person wants assistance, he will grasp your forearm or elbow as a guide-the person doesn't need to be held by the hand and led and most likely doesn't want to be. People with physical disabilities have the same need to control their bodies and to do things on their own as do able-bodied people. It is important, therefore, that the pharmacist respect the physically disabled person's right to indicate whether special help is needed.
Arnerican Pharmacy Vol. NS22, No. 10, October 1982/551
Allowing Time Equally important is that the customer with a physical disability be allowed the extra time that may be needed to get things said or done. The person in a wheelchair opening the door of the neighborhood pharmacy may struggle for a little while, but eventually will get in. Likewise, the person with cerebral palsy who has difficulty speaking and who communicates by pointing to words and letters on a word board, will also get a message across, given the time to do so. When communicating with a person who has difficulty speaking, it is
Communication between people always involves two different levels of message sending-verbal and nonverbal. Verbal messages can be described as including both the spoken and written words we use to send information. Nonverbal messages include such factors as voice tone, inflection and quality; g~s tures; facial expressions; and physical attractiveness. All of these factors affect the way in which a verbal message is received. The important thi11g to remember in our communication is that our nonverbal messages are often more powerful than our verbal messages, and when they contradict one another, it is the nonverbal messages that are usually remembered.
39
When a pharmacist directs communication . to the attendant or · companion of a physically disabled patient, he immediately sends a nonverbal message to that patient indicating that he or she is not important in the interaction. Even though the pharmacist may have asked the patient whether he could be of service, the message changed when he focused eye contact and turned his body toward the other person. This example underscores a very sensitive issue: people with physical disabilities want to be dealt with directly rather than through a third party. Just as important is the way in which you treat the patient directly. People often raise their voices when speaking with certain handicapped people, believing that it will help their messages to be understood better. It is entirely unnecessary to alter your normal speaking pattern in response to a patient whose speech is slow or difficult to understand unless the patient indicates a need for more clarity. There is also no reason for the pharmacist to feel awkward or embarrassed about using certain phrases like, "Will I see you next week?" or "Are you going to be running along now?," with someone who is blind or someone who uses a wheelchair, or about asking a per-
son with a speech impairment torepeat his message. Most people with speech disabilities realize that their speech is sometimes hard to understand, especially when it is the first time someone has heard them talk. In addition, the pharmacist needs to be aware of the way he looks at the person. Although it is not unusual for someone to take a second look at a person who is physically different from himself (whether that person has dyed red hair or an artificial limb), it is obviously inappropriate and rude to stare at someone for a long period of time. Staring invades both that person's privacy and his sense of personal space. And it is just as offensive to avoid eye contact deliberately with a person who is physically disabled. The overriding rule of thumb that can serve as a guideline for today' s pharmacist in interacting with patients with physical disabilities is that disabled people want to be treated the same way as able-bodied people whenever possible. They don't want to be patronized or singled out, yet they realize that there are times when special considerations are both acceptable and necessary.
Making Life Comfortable There are a number of things that a pharmacist can do to make everyday living more comfortable for
disabled patients. One way is b) promoting special aids when ad. ministering prescriptions. A blind person can be given different sized bottles or containen when more than one prescription will be taken. For the patient with limited vision, affix bright-colored stickers stamped with the dosage to the prescription bottle. You might also suggest the use of a speciat 7-day container for dividing a week's supply of medicine. A second way is by making sure that the pharmacy is truly accessible to people with physical disabilities, specifically wheelchair users. There are more people today than ever before who have physical disabilities. The pharmacist who wants to expand his business to include those individuals must accommondate their needs. Contact the American Institute of Architects for the publication defining the standards for barrier-free architecture. Once the facility has been determined to be accessible, the pharmacist can contact any one of a number of groups or organizations that make available decals and signs displaying the international symbol of access.* These decals and signs mounted in the pharmacy windows will communicate to the public and to wheelchair users that people with physical disabilities are welcome there. The pharmacist who is looking for more information and who is interested in improving communication with the disabled community can contact the local chapter of any of the following organizations: the National Spinal ·cord Injury Association; the Muscular Dystrophy Association; the Multiple Sclerosis Society; United Cerebral Palsy; the Easter Seal Society; the American Cancer Society; the United Ostomy Association. Many of these organizations also make available, at a minimal cost monthly newsletters providing valuable insight for the pharmacist who wants to stay abreast of current events and developments in the disabled community. 0 *For details o n obtaining specific types of decals, contact the Greater Milwaukee Area Chapter of the Na tional Spinal Cord Injury Associa tio n , 9001 Watertown Plank Rd. , Milwa ukee, WI 53226 (414) 475-7792.
40
American Pharmacy Vol. NS22, No. 10, October 1982.5
The trend toward mainstreaming physically disabled persons into society is particularly significant for the pharmacist because of the special role he or she plays in providing health care services. In addition to the responsibility of dispensing medication and providing clear patient . consultation, the pharmacist is often involved in the sale and rental of equipment and supplies for home health care. Many pharmacies carry canes,
©©[Q]J,[Q]JffiwD©fflilii®w~
Tim @ilili@IT
YD'Jwumlmf) Barry N. Eigen is president, chief executive officer and cofounder of Sickroom Service, Inc., 728 North 7 Street, Milwaukee, WI 53233. Sickroom Service is a national organization of pharmacists specializing in the rental and sale of medical equipment and supplies for home health care. Eigen has served as a member of the Wisconsin Governor's Committee for People with Disabilities and the executive committee of the National Spinal Cord Injury Association as well as chairman of the Southeast Wisconsin Regional White House Conference on the Handicapped. Currently, he serves on the board of directors of the Easter Seal Society. American Pharmacy Vol. NS22, No. 10, October 1982/549
crutches, walkers, wheelchairs, hospital beds, and other items needed by persons with temporary or permanent disabilities. It is therefore essential that the pharmacist learn to avoid common errors and achieve a comfortable and clear manner of communicating with disabled patients. Chances are, however, that you may be unsure how to do this. Unless you have had a great deal of involvement with the physically disabled community-as a pharmacist or as a member of local organizations dedicated to serving the needs of physically disabled people-you may not know what the most common errors are. Unfortunately, pharmacists are not alone, since uncertainty and the general lack of knowledge about effective communication with disabled persons goes back to the beginning of our dealing with people with physical disabilities.
Attitudinal Barriers A mere century ago, people with physical disabilities were associated with witchcraft and sorcery. Physical deformities were regarded as unnatural, and the disabled person was often shunned by the rest of society. One of the first major breakthroughs in the social emancipation of disabled individuals came in Victor Hugo's The Hunchback of Notre Dame, which presented an entirely different image of a physically disabled person. Written in the early
1800s, Hugo's portrayal of a severely disabled person as a sensitive and caring human being illustrated the capability of a person with physical disabilities to experience life and its challenges much the same as any other human being. In more recent times, the effort made to hide former president Franklin D. Roosevelt's use of a wheelchair by photographing him only when standing on braces behind a podium or sitting in a regular chair is an example of most people's thinking in regard to the abilities of disabled persons. It was generally not acceptable for a person to have a physical disability and hold a position of power. Today, "possession" and "witchcraft" are terms that few if any people would think of associating with a physical disability. Still there are subtle and sometimes overt forms of discrimination--commonly referred to as "attitudinal barriers"-that exist and often become apparent when able-bodied persons attempt to communicate with a disabled person. The major reason is that most able-bodied individuals have had little exposure to people with physical disabilities. Although the physically disabled have always been a part of our communities, they have been largely ignored.
Increasing Visibility Generally speaking, the vast majority of us do not communicate with physically disabled persons on a day-to-day basis, whether socially or in the work environment. In addition, the news and entertainment media have helped perpetuate the "invisibility" of this growing segment of our population. Television, movies and print media offer little in the way of role models from which to choose when communicating with a physically disabled person. With some notable exceptions-among them the "Ironsides" television series featuring Raymond Burr as a paraplegic police chief; "Longstreet," a television program in which James Franciscus portrayed a blind investigator; and "Coming Home," a recent movie depicting the life of a paraplegic 37
Vietnam veteran as played by Jon Voight-people with multiple sclerosis, cerebral palsy, hearing or visual impairments, paraplegia, quadriplegia, and other physical disabilities are noticeably absent from the world created for us by producers and writers. Today, however, physically disabled people are assuming more active roles in society. They are a more cohesive group, aware of their needs and right to be part of society. And they are no longer closeted away at home. Instead, they are working to increase their visibility by forming consumer advocacy groups to generate public awareness concerning the special needs of the physically disabled on issues such as securing an architecturally free environment, access to public transportation, and equal educational opportunities. They are much more mobile than their stereotypes and often capable of getting around independently. For instance, it's a common misconception that all people who use wheelchairs never go out alone, and it is equally incorrect to assume that all wheelchair users need to be transported by some public conveyance or by a friend in an automobile. Many paraplegics whose lower bodies are paralyzed are able to drive their own cars by using hand -operated controls, as are quadriplegics who suffer mobility limitations in all four extremities.
Furthermore, physically disabled people who use wheelchairs view their wheelchairs differently from the majority of able-bodied people. Instead of seeing himself as being confined to a wheelchair, a person with a physical disability regards his wheelchair as a means of mobility. Many physically disabled people would say that the real limitations they experience result from society's physical and psychological barriers.
Treating the Disabled The pharmacist who has had little experience dealing with physically disabled people or who feels apprehensive about communicating with them is likely to ask if they should be treated differently from other patients and, if so, how? When communicating with a physically disabled person, the
point that should be uppermost in the pharmacist's mind is that a person who has a physical disability is a person-like anyone else. A physical handicap should not be associated with a mental disability. Too often we assume that the slow or slurred speech that sometimes results from cerebral palsy, multiple sclerosis, laryngectomies, strokes, head injuries, hearing impairments, or other disabilities signals an impairment in thinking ability. This inaccurate association of a physical and mental disability is, perhaps, the most common error inhibiting good communication. Another common error that impedes effective communication involves the questions of when and how to offer physical assistance. Too often, when we see a person in a wheelchair struggling to get through a door or over a threshold, we rush to help without considering that the person may not want or need any help. Similarly, when we see a blind person waiting to cross the street, our first inclination may be to take the person's hand and lead him across. Unfortunately, this kind of behavior, however well-intended, diminishes the integrity and independence of the disabled person and does not set the stage for good pharmacist-patient communication. In situations like these, offer assistance only when asked to do so or if the need seems obvious, without overdoing it or insisting on it. Push a person's wheelchair only after asking whether a push is wanted.
Photos by Collins. courtesy of S1ckroom Serv1ce. Inc
38
American Pharmacy Vol. NS22, No. 10, October 1982155
important to provide complete and unhurried attention. The patient with a physical disability, just like any other customer, will know when a pharmacist is exasperated and doesn't care to give the time and information needed. And, like any other customer, persons with physical disabilities are likely to become angry . and dissatisfied and may take their business elsewhere. Communication should be encouraging rather than correcting. Instead of talking for the person who has a speech impairment, the pharmacist can allow the person a chance to "fill in the gaps." If necessary, the pharmacist can ask questions that require short answers or a nod or shake of the head. When communicating with a person who has a hearing impairment, messages should be spoken calmly, slowly and distinctly. Using gestures and standing with the light facing him will aid the pharmacist in communicating with the patient. If it seems that the patient does not fully understand, the pharmacist can also communicate by writing notes. Finally, when greeting a customer with severe loss of vision, it is helpful and considerate for the pharmacist to identify himself and any other people who happen to be with him, using the person's na1ne when talking as a clue to whom the conversation is directed.
Nonverbal Messages
When moving up or down steps, ramps or other obstructions in the pharmacy, ask the person how to proceed. If a blind person wants assistance, he will grasp your forearm or elbow as a guide-the person doesn't need to be held by the hand and led and most likely doesn't want to be. People with physical disabilities have the same need to control their bodies and to do things on their own as do able-bodied people. It is important, therefore, that the pharmacist respect the physically disabled person's right to indicate whether special help is needed.
Arnerican Pharmacy Vol. NS22, No. 10, October 1982/551
Allowing Time Equally important is that the customer with a physical disability be allowed the extra time that may be needed to get things said or done. The person in a wheelchair opening the door of the neighborhood pharmacy may struggle for a little while, but eventually will get in. Likewise, the person with cerebral palsy who has difficulty speaking and who communicates by pointing to words and letters on a word board, will also get a message across, given the time to do so. When communicating with a person who has difficulty speaking, it is
Communication between people always involves two different levels of message sending-verbal and nonverbal. Verbal messages can be described as including both the spoken and written words we use to send information. Nonverbal messages include such factors as voice tone, inflection and quality; g~s tures; facial expressions; and physical attractiveness. All of these factors affect the way in which a verbal message is received. The important thi11g to remember in our communication is that our nonverbal messages are often more powerful than our verbal messages, and when they contradict one another, it is the nonverbal messages that are usually remembered.
39
When a pharmacist directs communication . to the attendant or · companion of a physically disabled patient, he immediately sends a nonverbal message to that patient indicating that he or she is not important in the interaction. Even though the pharmacist may have asked the patient whether he could be of service, the message changed when he focused eye contact and turned his body toward the other person. This example underscores a very sensitive issue: people with physical disabilities want to be dealt with directly rather than through a third party. Just as important is the way in which you treat the patient directly. People often raise their voices when speaking with certain handicapped people, believing that it will help their messages to be understood better. It is entirely unnecessary to alter your normal speaking pattern in response to a patient whose speech is slow or difficult to understand unless the patient indicates a need for more clarity. There is also no reason for the pharmacist to feel awkward or embarrassed about using certain phrases like, "Will I see you next week?" or "Are you going to be running along now?," with someone who is blind or someone who uses a wheelchair, or about asking a per-
son with a speech impairment torepeat his message. Most people with speech disabilities realize that their speech is sometimes hard to understand, especially when it is the first time someone has heard them talk. In addition, the pharmacist needs to be aware of the way he looks at the person. Although it is not unusual for someone to take a second look at a person who is physically different from himself (whether that person has dyed red hair or an artificial limb), it is obviously inappropriate and rude to stare at someone for a long period of time. Staring invades both that person's privacy and his sense of personal space. And it is just as offensive to avoid eye contact deliberately with a person who is physically disabled. The overriding rule of thumb that can serve as a guideline for today' s pharmacist in interacting with patients with physical disabilities is that disabled people want to be treated the same way as able-bodied people whenever possible. They don't want to be patronized or singled out, yet they realize that there are times when special considerations are both acceptable and necessary.
Making Life Comfortable There are a number of things that a pharmacist can do to make everyday living more comfortable for
disabled patients. One way is b) promoting special aids when ad. ministering prescriptions. A blind person can be given different sized bottles or containen when more than one prescription will be taken. For the patient with limited vision, affix bright-colored stickers stamped with the dosage to the prescription bottle. You might also suggest the use of a speciat 7-day container for dividing a week's supply of medicine. A second way is by making sure that the pharmacy is truly accessible to people with physical disabilities, specifically wheelchair users. There are more people today than ever before who have physical disabilities. The pharmacist who wants to expand his business to include those individuals must accommondate their needs. Contact the American Institute of Architects for the publication defining the standards for barrier-free architecture. Once the facility has been determined to be accessible, the pharmacist can contact any one of a number of groups or organizations that make available decals and signs displaying the international symbol of access.* These decals and signs mounted in the pharmacy windows will communicate to the public and to wheelchair users that people with physical disabilities are welcome there. The pharmacist who is looking for more information and who is interested in improving communication with the disabled community can contact the local chapter of any of the following organizations: the National Spinal ·cord Injury Association; the Muscular Dystrophy Association; the Multiple Sclerosis Society; United Cerebral Palsy; the Easter Seal Society; the American Cancer Society; the United Ostomy Association. Many of these organizations also make available, at a minimal cost monthly newsletters providing valuable insight for the pharmacist who wants to stay abreast of current events and developments in the disabled community. 0 *For details o n obtaining specific types of decals, contact the Greater Milwaukee Area Chapter of the Na tional Spinal Cord Injury Associa tio n , 9001 Watertown Plank Rd. , Milwa ukee, WI 53226 (414) 475-7792.
40
American Pharmacy Vol. NS22, No. 10, October 1982.5