Eddey, Gary E. MD; Robey, Kenneth L. PhD
It is commonly accepted that health care providers must strive to deliver care in a “culturally competent” manner; that is, they must be aware of the importance of the values, beliefs, traditions, parenting styles, and other aspects of a person's culture when serving and interacting with a patient, and they must develop the competencies necessary to address these cultural differences in their practices.1–4 Additionally, providers must understand the sometimes subtle impact of their own cultures on the way in which they deliver care.1,4
Race, ethnicity, religion, gender, sexual orientation, and age are commonly recognized in medical education as cultural domains in which various groups may have different care needs, different values, and different beliefs with regard to health and health care. Not only do differences in beliefs and values exist among these various cultural groupings, but also each individual is a member of multiple cultures simultaneously with a complex array of subtle and interacting cultural influences. A person's social identity and his or her concept of health and health care are based on the individual's multicultural identity. We believe the culture of disability should be included as one of the cultures that can influence an individual's perspective of health and health care. It is imperative that we address the culture of disability in cultural competency initiatives in medical school and continuing medical education. In this article, we define the culture of disability; apply a model of cultural competence to the culture of disability; and describe some effective training programs that educate physicians and physicians in training on how to deliver effective care to persons with disabilities.
The Culture of Disability
It is not within the scope of this article to examine the voluminous body of published theory and research on cultural competency, nor is it our intent to summarize the body of literature from the multifaceted and emerging field of disabilities studies. Our intent is to examine, within the context of our experiences training medical students at our hospital for persons with developmental disabilities, the suitability of the cultural competency framework in promoting appropriate practices for serving persons with disabilities.
A widely cited definition of a culture is that offered by anthropologists Bates and Plog.5 They define a culture as
a system of shared beliefs, values, customs, behaviors, and artifacts that the members of a society use to cope with their world and with one another, and that are transmitted from generation to generation through learning.5, p. 4
Let us compare the above definition of culture with the concept of a disability culture. Steven E. Brown, co-founder of the Institute on Disability Culture, describes the culture of disability as follows:
People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity.6, p. 48
In this description of a culture of disability, we see both a group and personal identity based on common experience, a shared resilience in coping with a world that may be oppressive, and a unique body of tangible artifacts (e.g., art, music, literature) derived from this shared experience. Implicit is the notion that these artifacts and shared experiences build over time, strengthening and perpetuating the group identity of persons with disabilities. The concordance between the concept of disability and the definition of culture offered by Bates and Plog is substantial.
Consider the following description of disability culture offered by Gill:
The elements of our culture include, certainly, our longstanding social oppression, but also our emerging art and humor, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview, beliefs and values, and our strategies for surviving and thriving.7, p. 18
In this definition we again find persons with disabilities being defined as a cultural group and the elements of their culture allow persons with a wide range of disabilities to cope with the world.
Both Brown and Gill have pointed out that disability culture is not defined merely by the way in which persons with disabilities are treated. Gill, in defining disability culture, said, “It is not simply the shared experience of oppression. If that were all our culture was, I would agree with those who doubt the probability of a disability culture.”7 Rather than poor treatment being a precipitant of disability culture, we would posit that poor treatment of persons with disabilities should be viewed as evidence of cultural incompetence on the part of others.
When considering the culture of disability, it is relevant to include within that rubric the values and needs of the broader network of persons who are integral to the culture such as parents, spouses, partners, caregivers, siblings, children, and advocates. Not only do persons with disabilities contribute to the values, beliefs, and shared experience that constitute the disability culture, but family members, caregivers, and advocates may also be deeply rooted in, and contribute immeasurably to, the culture. We feel strongly that any operational definition of a culture of disability must include this extended network.
While our intent here is to explore cultural competency as it relates to a broad culture of disability, one might also consider that there may be disability subgroups reflecting different values, needs, and experiences. Some of these disability subgroups, such as the community of those with hearing impairment, may even have sets of values or needs that are, to varying degrees, at odds with those of the larger disability community, fostering a degree of isolation from the broader community of disabled persons as well as from persons without disabilities.8
The notion of extending the same concepts of cultural competency that have been used in addressing cultural differences due to ethnicity to the disability culture is commonly described as the sociopolitical or “minority group” model of disability.9 In this model, people with disabilities may be viewed as a minority group occupying a socially stigmatized social position similar to that of ethnic minorities, which may be subjected to stereotypes, prejudiced attitudes, and subtle or blatant institutional barriers.
Relevant to this discussion, health care disparities faced by persons with disabilities have been examined and brought to national attention by the Surgeon General.10 One study of Kansas residents found that 40% of those with disabilities felt that their health was fair or poor, while only 11% of the general population viewed their health in this manner.11 Also in this study, the proportion of women with disabilities who lacked a recent Papanicolaou test was almost twice that of women in the general population. While not all of these disparities can be readily attributed to cultural incompetence on the part of individual care providers, it is possible that lack of cultural sensitivity and a tendency to subtly avoid this population might contribute to the disparities. It is also likely that some of these disparities reflect broader institutional barriers. Such barriers will continue to stay in place until health care providers and the organizations and environments in which they practice become more supportive and welcoming toward persons with disabilities.
Flores' Elements of Cultural Competence
In considering the Latino culture, Flores1 introduced a model of cultural competence in health care. He outlined five elements that physicians must understand, and find the clinical relevancy of, in order to be culturally sensitive or culturally competent. Those five elements are: (1) language issues, (2) patient/parent beliefs, (3) folk illnesses and remedies, (4) provider practices, and (5) normative cultural values. Applying Flores' five elements of culturally competent care to the culture of disability provides a useful framework for looking at the issue from a clinical standpoint.
In the framework provided by Flores, health care providers must use interpreters if they are not fluent in the patient's primary language. He also recommends encouraging staff to develop foreign language skills and finding other ways to communicate with patients who have limited proficiency in the dominant culture's language.
In order to competently care for persons with disabilities, the physician must be willing and able to explore means of communicating with persons who might be fully nonverbal or have other verbal communication impairments.
For a patient who is nonverbal, cultural competence may mean foregoing the traditional open-ended questioning style in the clinical interview in favor of yes/no questions. Learning a skill as basic as identifying how a patient says “yes” and “no” can mean the difference between foreclosing the patient from acting as a participant in the care process and fully incorporating the patient's input into his or her care.
To successfully achieve competency in communication with nonverbal patients physicians need a basic familiarity with an array of assistive and augmentative communication devices commonly used by persons who are nonverbal. The devices vary dramatically in complexity, but whether simple or complex, manual or electronic, they can dramatically increase the physician's ability to gather information.
Manual devices may be as simple as images arranged on a board or wheelchair laptray. The individual may point to an image of a specific symbol, or the individual may use eye gaze, looking at a color, a number, or some combination of indicators to draw focus to a particular symbol. Other manual devices include sets of words or phrases, each with a corresponding number. Through eye gaze, the individual can communicate a series of digits, usually located around the periphery of the device that correspond to an idea that he or she wants to express.
The complexity of electronic communication devices varies widely. The selection of devices is based on the individual's needs, resources, and cognitive ability. The more complex devices allow the user to communicate fully with synthesized voice output and/or printing capability. For persons with physical limitations, the accessibility of these devices is tailored to the individual and may involve direct use of the keys, use of a head-mounted pointer, or use of external switching devices.
Cultural competence in the area of language skills for disabled patients may also require an understanding that an inability to speak does not necessarily reflect cognitive deficit. There is a common and perhaps implicit assumption that dysarthric speech or the absence of speech is a product of, or at least associated with, cognitive impairment. Unfortunately, this assumption may dramatically alter the physician's approach to the patient and his or her willingness to view the patient as a contributor to, and partner in, the care process.
For patients who do have cognitive impairment, cultural competence may mean adjusting the complexity of speech to be understandable. Addressing an individual in condescending tones or in an “infantilizing manner” is an example of cultural incompetence. Ignoring the individual as a potential key source of clinical information and consequently foreclosing his or her role as a partner in the care process is another example of cultural incompetence and of failing to fulfill basic obligations of autonomy. In fact, cultural competence might require a very active solicitation of the patient's contributions because a disabled patient may be used to being subtly or blatantly ignored in the care process.
Flores' framework recognizes that beliefs held by patients and their families may have considerable impact on clinical care. Each culture holds explicitly or implicitly expressed attitudes and beliefs about health and the health care system, about seeking help, and sometimes, about specific illnesses.
John Hockenberry's memoirs describe an event shortly following the onset of his acquired disability—paralysis as the result of a roll-over car accident—in which his belief system regarding his own social role as a person with a disability is shaped, in part, by interactions with health care professionals.12 While cooking a meal for a friend, Hockenberry, distracted by conversation with the friend, suffers a burn to his leg because of his lack of sensation below the waist. This event leaves him feeling foolish and ultimately hesitant to seek medical care. When he does eventually seek medical care, he is embarrassed and becomes humiliated by the types of questions asked of him by the hospital medical staff as they inquire how and why he received the burn and why there was a long delay in obtaining treatment, presumably suspecting that the injury was a result of abuse or self-injury.
Clearly, the therapeutic alliance between patient and physician has not developed and Hockenberry leaves the emergency room never to return. Hockenberry ends up seeking care when he absolutely needs it from a urologist who has clinical experience dealing with those with disabilities. However, Hockenberry's views on the health care system have been affected by the emergency room experience and a new belief system emerges. This belief system, in which the individual with a disability feels awkward, embarrassed, and even angry when faced with the need for medical care by a system that is perceived as lacking in understanding, is the product of a history of personal and shared experiences in the health care setting.
Physicians serving the patient with developmental disabilities should be aware of some parents' or patients' beliefs that they know more about their or their children's conditions than do the physicians. These individuals have had many encounters with physicians who were, indeed, ill-prepared to serve them or their children who have disabilities. Those persons might adopt a strategy of doing their own research and continually building their own knowledge base so that they can monitor and ensure that they or their children are receiving proper care.
Quite appropriately, parents might also believe that physicians do not understand the extent of the care load on the family or caregivers of persons with severe disabling conditions. Physicians rarely have the opportunity to observe the routines of patients' families to understand challenges that might be faced by all in the home. Care load is an important dimension of the family's experience and is a strong factor in the formation of parents' feelings and beliefs about their child's health care needs.
Parents of disabled children have at times struggled with third-party insurers, with school systems, and with state and local government offices in meeting their children's needs, and many have adopted the parental advocacy role with a fervor that persists well into their child's adulthood, even if the adult is competent and capable. While this tendency toward assertive advocacy might be viewed by some physicians as threatening or even obstructionist, the energy, goal-directedness, and resourcefulness that these advocacy-minded parents bring to the table can be used as an important resource in securing specialty or ancillary services and in accomplishing treatment goals for the patient.
Folk illnesses and folk remedies
Flores suggests that physicians must be able to recognize folk illnesses, which are defined as ailments that have a unique sociocultural component and are not clearly defined in a traditional biomedical framework. Once a folk illness is recognized, the physician needs to determine its impact on care, suggest alternatives to folk remedies that might be harmful, and thoroughly explain to the patient and/or family the biomedical condition and treatment rationale.
While we are not familiar with folk illnesses specific to the culture of persons with disabilities, folk remedies are often seen. Families of those with disabilities are often the targets of marketing by the producers and sellers of nutritional or homeopathic products, or by practitioners of little-known deep-tissue manipulation therapies, with promises of cures for their family member's disability. In many cases, the benefits of these untested therapies are uncertain, and the possibility of harm may exist.13 In their overwhelming desire to obtain help for their loved one with a disability, some families might seek help through these treatment modalities. While it is not incumbent upon the physician to accept this form of treatment, the physician must acknowledge the existence of the families' need to seek any opportunity to benefit their loved one and must educate himself or herself about the traditional and nontraditional treatment alternatives in order to effectively educate the family about the relative risks and benefits of these alternatives.
This element of cultural competence refers to the aspects of the physician's culture that are represented in a physician–patient interaction. The physician must be aware of his or her own beliefs or values and their impact on clinical practice.
Sociopsychological research has demonstrated that people tend to interact with persons who have disabilities differently than they do persons without disabilities. Sometimes this takes the form of “infantilizing” speech as described earlier in this artcile, which presumably reflects an assumption that persons with physical disabilities are somehow more childlike than persons who do not have disabilities.14 This effect seems to hold true for medical students getting their first in-depth exposure to persons who are nonverbal due to congenital conditions.15 Such assumptions can have considerable impact on the care process, perhaps guiding the physician to inadvertently discount or ignore the input of patients with disabilities.
A lack of attention to, and sensitivity toward the transition to adulthood in persons with disabilities might be another provider practice that reflects cultural incompetence and, in turn, might contribute to health disparities experienced by persons with disabilities. It is not unusual for an individual with disabilities, particularly an individual with cognitive disabilities, to receive continued care from a pediatrician well into, and perhaps throughout, adulthood. This extension of pediatric care into adulthood might result from assumptions by the pediatrician (and perhaps the patient and/or the patient's family) that individuals with disabilities require the child-oriented approach that can best be provided by a pediatrician. In some respects, this might appropriately be viewed as reflecting a lack of “age-specific competencies,” in which the pediatrician is not guiding the care of the individual in a manner befitting his or her age. This extended treatment by pediatricians may result in the neglect of adult health needs, an issue about which federal agencies have expressed concern.16,17
Home visits allow the physician opportunity to understand an individual with disabilities' world or culture. A physician can learn much from a home visit, including the environmental, familial, and social factors that might have implications for the patient's care.
Focusing on disease specific entities may not be helpful in caring for patients with disabilities. Individuals with disabilities often have complex medical conditions that require a multidimensional approach. For example, a patient with a primary disabling condition may have other clinical conditions as well. These other clinical conditions may be related to the primary disability or independent of the disorder. A physician practice that integrates a thorough understanding of the patient's associated clinical conditions and secondary conditions is important.18
Normative cultural values
Each culture is built on a foundation of values and beliefs that provide a common bond among its members. According to Flores, the physician must be able to identify those values and beliefs that might affect the individual's care and must strive to acknowledge and accommodate those values in the physician–patient encounter.
Gill7 listed some of the values that underpin the disability culture. These values include:
1. an acceptance of human differences,
2. a matter-of-fact orientation toward helping and being helped,
3. a tolerance for lack of resolution or cure, and dealing with the unpredictable,
4. a sense of humor about disability
5. skill in managing multiple problems,
6. a carefully honed capacity for closure in interpersonal communication,
7. flexible, adaptive, resourceful approaches to tasks and problems,
8. an understanding that needs are different depending on the level of dependence, and
9. interdependence valued more than independence (the opposite of the value system in the able-bodied population).
Some physicians emphasize “normalizing” the individual with a disability, which contrasts with the first value cited by Gill. Recommending a prosthesis for cosmetic purposes when another more functional alternative is available, for example, would constitute the imposition of a cultural value of normalcy onto the member of a culture in which such normalcy is not highly valued. In effect, the physician is exercising a form of “cultural centrism,” assuming that the values of the culture in which he or she resides also are held by the culture of the patient.
The ninth value cited by Gill, which is the disabled culture's high regard for interdependence rather than independence and described in detail by contemporary virtue ethics theorist Alasdair MacIntyre, is applicable to all of society. MacIntyre argues that all humans are by nature dependent whether because of age, situation, or presence or lack of disability. Consequently, he argues that it is “inappropriate to think of the disabled as them as other than us, as a separate class not as ourselves as we have been, sometimes now are and may well be in the future.”19 MacIntyre suggests that no one is wholly dependent or independent, but rather that all members of society are interdependent. The important point for this discussion, however, is that within the context of the clinical encounter interdependence is a value that perhaps holds greater salience for persons with disabilities than for those without.
Are Social Constructs Enough to Understand Disability Culture?
A question that is often raised in disability culture discussions involves the relative contributions of society and biology to the overall experience of disability. Is it possible that Flores' five elements are not sufficient to fully articulate and understand disability culture? Do the social setting, the attitudes of the general population, and the environmental barriers contribute more to the experience (and construct) of disability, or is it primarily the underlying biological aspects of the disability that lead to the individual's sense of a disability? Whereas it is not the purpose of this paper to examine this issue in depth, perhaps the following discussion of the four dimensions of disability published by the World Health Organization (WHO)20 will help focus the discussion on the relative contributions of social and biological determinants to a culture of disability.
According to the WHO's definition of disability, dimensions of disability include
▪ impairment to the structure of a human body,
▪ impairment to the physiological and psychological functions of a person,
▪ activity limitations such as having difficulty executing specified activities, and
▪ participation limitations in society in general.
Each of these dimensions of disability can be impacted by personal factors (problems of the person) or environmental factors (problems of the environment or society).
The WHO definition points out the various factors involved in disability and posits that disability has factors inherent to the person as well as factors inherent to the society or environment. For example, the biological contributions of an individual with cerebral palsy, which include spastic quadriplegia with pseudobulbar palsy and cognitive deficits, cannot be ignored, nor can those of an individual with an acquired spinal cord injury due to trauma or an individual with disabilities due to the aging process. Even if the environmental factors are resolved, the individual's biological factors may continue to affect the experience of disability.
It would seem reasonable to assume that a complete understanding of disability culture will need to incorporate both the personal, biological contributions and environmental or social factors.
Consequences of Cultural “Incompetence”
What problems arise when physicians and other health care providers are not provided with an opportunity to develop knowledge, skills, and behaviors that reflect accurate perceptions of disability? The consequences of cultural incompetence vary widely. Cultural incompetence prevents effective patient–provider relationships. The patient and/or family may feel frustrated that their needs and concerns have been discounted. Further, the inability to gather clinical information regarding patients who have impairments in verbal communication may have serious clinical consequences. Examples of possible adverse consequences of cultural incompetence are summarized within the context of Flores'1 framework in List 1.
Many physicians have had little if any exposure to disability issues during their training. A physician's lack of exposure to persons with severe disabilities will limit the physician's understanding of the various clinical processes and associated conditions that are common among persons with disabilities. The lack of exposure also affects the physician's attitudes about those with disabilities, particularly those attitudes concerning individuals' daily self-care capabilities, intellectual abilities, and vocational/lifestyle prognoses.21,22
During training, physicians need to have more exposure to persons with disabilities. One study found that medical students' expectations regarding the capabilities and prognoses of individuals with cognitive disabilities were significantly lower than those of physicians who had had professional involvement with similar patients.23 The authors, and others16,17,24 recommended that medical school curricula provide greater focus on persons with disabilities, so that students could develop an approach to the patient that is mutually satisfactory.
A range of experiential programs has been implemented in the U.S. to train physicians and medical students in the health care needs and social/familial circumstances of persons with disabilities. These programs address communication and attitudinal issues in varying degrees. Among these programs are developmental disabilities rotations such as that at the University of Minnesota,25 the “medical home” training programs of the American Academy of Pediatrics,26 and the “Operation House Call” program from the partnership of the Boston University School of Medicine and the Greater Boston Association for Retarded Citizens.27 Tufts University School of Medicine has also employed persons with disabilities as standardized patients in their training program.28 Most of the programs we have become aware of have been conceptualized and operated by programs in pediatrics and thus have a developmental emphasis.
The question of developing competencies in medical students or faculty is quite difficult to address. It is our opinion, based on our work with medical students over the past 10 years, that exposure to the complex patient with an acquired or congenital disability in their natural environment, when supported by interested and knowledgeable faculty, is quite helpful to develop the necessary competencies. We believe each department in a medical school should develop relationships with organizations that care for those with a wide range of disabilities so that educational programming can occur, in part, in the natural setting. Beyond exposure to patients who have disabilities, exposure to faculty and other medical students who have disabilities may be helpful. Such exposure might lead to an understanding of the capabilities and the social and occupational potential of their future patients who have disabilities.
The Training Program at Matheny Medical and Education Center
The Matheny Medical and Educational Center, a clinical affiliate of the University of Medicine and Dentistry of New Jersey–New Jersey Medical School (UMDNJ–NJMS), has for many years pursued avenues of introducing medical students to the needs and strengths of individuals with developmental disabilities. All undergraduate students enrolled at UMDNJ–NJMS rotate through a specialized hospital and educational facility during their third-year clerkships. They are provided a series of didactic presentations and a formal curriculum that includes opportunities for direct contact with patients. As part of their experience, the medical students are engaged in a standardized patient (SP) exercise in which they are given the opportunity to practice using a yes/no questioning method when gathering clinical information from SPs who have cerebral palsy; are nonverbal; and are trained in the portrayal of appendicitis, pneumonia, otitis media, or other common illnesses.15 Medical students learn to establish a yes/no communication system quickly and to apply this communication system while they develop their therapeutic alliance with the SP. They are also taught how to conceptualize the care of complex developmental disabilities in children and young adults. We have found that the outcome of this SP exercise is typically increased levels of comfort with this patient population.
The Matheny Medical and Educational Center has developed, with funding from the U.S. Department of Education, a multimedia educational package designed to provide medical students with information about key developmental disorders, their associated clinical conditions, attitudinal issues that impact on the physician–patient interaction, and strategies for conducting clinical interviews with patients who are nonverbal due to their disability. The package consists of CD-ROM-based instruction29 and reference materials, supporting printable documents, and SP protocols to facilitate the inclusion of persons with developmental disabilities into medical schools' existing SP programs.
The Matheny Medical and Education Center's program hopes to examine the attitudes toward persons with disabilities that might affect the physician–patient encounter as well as the troublesome areas of communication that might contribute to the health care disparities faced by those individuals. The program's focus is compatible with Wear's notion of “insurgent multiculturalism” in cultural competence in medicine.30 Borrowed from Giroux,31 the term is used by Wear to describe an approach in which the focus of cultural competence goes beyond the patient–provider relationship to a fuller understanding of the social causes of inequality.
As with any culture, the culture of disability is associated with a broad array of beliefs, values, and subtleties. It is based on how individuals live with their disability and how they express themselves and function in our society. Physicians should be familiar with this blend of cultural “flavors and ingredients,” and should view that familiarity as a cultural competence, just as they would for cultural groupings based on ethnicity, religion, or other social parameters. Cultural competence also demands an understanding of disability as outlined in the WHO definition discussed above. Lack of cultural competence with regard to disabilities may result in an inadvertent ignoring of these patients' values or needs and, in its extreme, may result in an ignoring of these patients altogether.
Just as it is essential that medical training programs foster in their students the cultural competencies based on the more traditional cultural subgroupings, it is also important that these programs prepare their students to work effectively with persons who have disabilities.
We conclude that (1) a culture of disability does exist and aspects of it have implications for the health care process; (2) the concept of cultural competence must extend to include those competencies necessary to care for members of this culture; (3) the culture of disability should be included as one of the many cultures addressed in cultural competence initiatives within medical school curricula; and (4) faculty should consider the use of the natural environment of persons with disabilities as educational settings to build disability-related competencies and an appreciation for the culture of disability.
The authors would like to acknowledge Dr. Robert Like and Linda Beckley for their thoughtful and insightful comments on earlier drafts of this article.