Cultural Context and Stigma Discussion

Cultural Context and Stigma

Cultural context looks at individuals in society and how they are raised and how their culture affects their behavior.  It incorporates learned values and shared attitudes among groups of people.  It includes language, norms, customs, ideas, beliefs, and meanings and individual characteristics. Therefore, when the cultural context of a person or group is not understood, Stigma may occur. Culture is very important because our cultural orientation is present in every interaction, and it is how society identifies us as an individual or group. We tend to make assumptions about a person’s beliefs or behaviors based on a single cultural indicator, particularly related to race or ethnicity, when our cultural identities are a complex weave of all the cultural groups around us or that we belong to that influence our values, beliefs, and behaviors.

Recent knowledge emerging out of the disability rights movements and grounded in disability studies research promotes a new understanding of disability as a socially constructed culture and as a social identity. Many people support the emerging issue of “disability culture” or “the culture of disability” and many more dispute disability as being a cohesive force to form a cultural group. As we challenge these assumptions and traditional views of disability, our beliefs can become more meaningful and relevant to the disability community and more informative to social development.

1.  After reviewing the Learning Resources, please respond to the following questions:

Part I:  Please answer the following question with a detailed explanation.

a) Taking into consideration what constitutes a culture — Is there a convincing foundation to declare that there is a disability culture?

i)  If Yes, please explain and give two examples as to why, or

ii)  If Not, please explain and give two examples as to why.

b) To-Do –Watch Video:  WIPEOUT STIGMA. This version has subtitles. Amanda, Jill, D’art, and Max share personal stories of their mental health journeys. YouTube Film:

c) Explain at least two important messages that you learned from watching this video.

2.  Society tends to create stigma and place labels on people that are believed to be different than the majorly in many ways. In many instances, these actions become part of the norm of society and spread from one generation to the other. We also understand that stigma and labels, in most of the cases, have negative consequences for the targeted group.

Part II: Please answer the following questions:

a) What is a stigma, and how does it affect our perception of other people?

b) Describe two forms of the stigma that society applies to people with disabilities.

c) As society members, what can we do to eliminate the stigma placed on disability and people with disabilities?  Please explain and give one example.

Part III:

To-Do: Watch Video: I’m not your inspiration. Thank you very much. (Also listed in the Learning Resources).  A film by TED Ideas worth spreading at

a) What to do you consider a takeaway message from watching this video.

b) Would you recommend this video to others (family, friends, coworkers, etc.)?

****Questions/statements must be identified with their respective numbers Ex: 1. 2, 3, etc. 2. a, b, c, etc. If there is more than one Part to the discussion activity each Part I, Part II, etc. must be identified as well. Considering the Culture of Disability in
Cultural Competence Education
Eddey, Gary E. MD; Robey, Kenneth L. PhD
Academic Medicine: July 2005 – Volume 80 – Issue 7 – p 706-712 Article
Abstract
Cultural competence extends beyond understanding those values, beliefs, and needs that are associated
with patients’ age or gender or with their racial, ethnic, or religious backgrounds. People hold many
simultaneous cultural associations, and each has implications for the care process. The “culture of
disability” is a pan-ethnic culture for which a set of physician competencies are required to ensure
appropriate, culturally sensitive care to persons with congenital or acquired disabilities. Such
competencies include communicating with patients who have deficits in verbal communication and
avoidance of infantilizing speech; understanding the values and needs of persons with disabilities; the
ability to encourage self-advocacy skills of patients and families; acknowledging the core values of
disability culture including the emphasis on interdependence rather than independence; and feeling
comfortable with patients with complex disabilities. Medical schools have developed programs to
increase students’ exposure to persons with disabilities and it is suggested that such programs are most
effective when they are the result of collaboration with community-based facilities or organizations that
serve persons with disabilities in the natural environment. Combining lecture-based instruction and
structured experiences with the opportunity for students to interact with patients in their natural
environments may facilitate development of competencies with respect to patients with disabilities. The
culture of disability should be included as one of the many cultures addressed in cultural competence
initiatives in medical school and residency curricula.
Article Outline
The Culture of Disability
Flores’ Elements of Cultural Competence
Language issues
Patient/parent beliefs
Folk illnesses and folk remedies
Provider practices
Normative cultural values
Are Social Constructs Enough to Understand Disability Culture
Consequences of Cultural “Incompetence”
The Training Program at Matheny Medical and Education Center
Conclusions
References
1
Article
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
2
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
3
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.
Language issues
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 openended 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.
4
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 lap-tray. 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 dysarthria 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.
Patient/parent beliefs
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
5
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, illprepared 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
6
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.
Provider practices
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 article, 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
7
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.
2.
3.
4.
5.
6.
7.
8.
9.
an acceptance of human differences,
a matter-of-fact orientation toward helping and being helped,
a tolerance for lack of resolution or cure, and dealing with the unpredictable,
a sense of humor about disability
skill in managing multiple problems,
a carefully honed capacity for closure in interpersonal communication,
flexible, adaptive, resourceful approaches to tasks and problems,
an understanding that needs are different depending on the level of dependence, and
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 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
8
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
o
o
o
o
▪ 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”
9
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’1framework in List 1.
List 1 — Some Consequences of Cultural “Incompetence” with Patients Who Have
Disabilities
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
10
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.
Conclusions
11
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.
References
1
Flores G. Culture and the patient-physician relationship: achieving cultural competency
in health care. Journal of Pediatric. 2000;136:14–23.
2
Flores G, Abreu M, Schwartz I, Hill M. The importance of language and culture in pediatric care:
case studies from the Latino community. J Pediatr. 2000;137:842–48.
3
Like RC. Culturally competent managed health care: a family physician’s perspective. J
Transcultural Nursing. 1999;10:288–89.
4
Like RC, Steiner RP, Rubel AJ. STFM core curriculum guidelines: recommended core curriculum
guidelines on culturally sensitive and competent health care. Fam Med. 1996; 28:291–97.
5Bates DG, Plog F. Human Adaptive Strategies. New York: McGraw-Hill, 1991.
6
Brown SE. What is disability culture? Disability Stud Q. 2002;22:34–50.
7
Gill CJ. A psychological view of disability culture. Disability Stud Q. 1995;15:16–19.
8
Podden CA, Humphries TL. Deaf in America: Voices from a Culture. Cambridge, MA: Harvard
University Press, 1988.
9
Kasnitz D, Shuttleworth RP. Introduction: anthropology in disability studies. Disability Stud Q.
2001;21:2–17.
12
10
U.S. Dept. of Health and Human Services. Closing the Gap: A National Blueprint to Improve the
Health of Persons with Mental Retardation. Washington, DC: Government Printing Office, 2002.
11
Kansas Department of Health and Environment, Bureau of Health Promotion, Office of Injury and
Disability Programs. 1997 Kansas Disability Survey 〈http://www.kdhe.state.ks.us/idp/survey/default.htm〉.
Accessed 24 March 2005.
12
Hockenberry J. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence.
New York: Hyperion, 1996.
13
Rosenbaum P. Controversial treatment of spasticity: exploring alternative therapies for motor
function in children with cerebral palsy. J Child Neurol. 2003 Sep;18 suppl 1:S89–94.
14
Liesener JL, Mills J. An experimental study of disability spread: talking to an adult in a
wheelchair like a child. J Application of Social Psychol. 1999;29:2083–92.
15
Eddey GE, Robey KL, McConnell JA. Increasing medical students’ self-perceived skill
and comfort in examining persons with severe developmental disabilities: the use of standardized
patients who are nonverbal due to cerebral palsy. Academic Med. 1998;73 suppl 10:S106–8.
16
Healthy and Ready to Work National Center. Program background
〈www.hrtw.org/about_us/probg.html〉. Accessed 11 April 2005. Department of Health and
Human Services, Health Resources and Service Administration, Maternal and Child Health
Bureau, Division of Services for Children with Special Health Care Needs, Washington, DC,
2005.
17
Magrab PR, Millar HEC, editors. Growing Up and Getting Medical Care: Youth with
Special Health Care Needs. Proceedings of the Surgeon General’s Conference, 1989, Mar 13-15,
Jekyll Island, Georgia. Washington, DC: National Center for Networking Community Based
Services, Georgetown University Child Development Center.
18
Eddey GE. Comorbidities—Eddey replies. Dev Med Child Neurol. 2005;47:71–72.
19
MacIntyre A. Dependent Rational Animals: Why Human Beings Need the Virtues. Chicago: Open
Court, 1999.
20
World Health Organization. International Classification of Disability and Health. Geneva,
Switzerland, 2001.
21
Brillhart BA, Jay H, Wyers ME. Attitudes toward people with disabilities. Rehabilitation in Nursing.
1990;15:80–85.
22
Murray M, Chambers M. Effect of contact on nursing students’ attitudes to patients. Nurse Educ
Today. 1991;11:363–67.
23
Handler EG, Bhardwaj A, Sant Jackson D. Medical students’ and allied health care professionals’
perceptions toward the mentally retarded population. J Dev Physical Disabilities. 1994;6:291–97.
24
Piachaud J. Teaching learning disability to undergraduate medical students. Adv Psychiatric
Treatment. 2002;8:334–41.
13
25
McBride M. Why partnerships are necessary in quality health care for children with disabilities.
Impact (Publication of the Institute on Community Integration, University of Minnesota). 2000;13(2): 16–
17.
26Moore B. National organizations join together to advance the “Medical Home” approach. Impact
(Publication of the Institute on Community Integration, University of Minnesota). 2000;13(2): 16–17.
27
Coulter DL. Operation house call: partnering to educate medical students. Impact (Publication of
the Institute on Community Integration, University of Minnesota). 2000; 13(2):8–9.
28
Minihan PM, Bradshaw YS, Long LM, Altman W, Perduta-Fulginiti S, Ector J, et al. Teaching
about disability: Involving patients with disabilities as medical educators. Disability Studies Quarerly
〈http://www.dsq-sds.org/2004_fall_toc.html〉. Last updated in 2004. Accessed 24 March 2005.
29
Robey K, Eddey G. Serving Persons Who Have Developmental Disabilities in the Health Care
Setting [CD-ROM’s]. Peapack, NJ: Matheny School and Hospital, 2002.
30
Wear D. Insurgent multiculturalism: rethinking how and why we teach culture in medical
education. Academic Medicine. 2003;78: 549–54.
31
Giroux H. Insurgent multiculturalism and the promise of pedagogy. In: Duarte, EM, Smith S (eds).
Foundational Perspectives in Multicultural Education. New York: Longman, 2000:195–212.
© 2005 Association of American Medical Colleges.
*****
14
DISABILITY
ETIQUETTE
Tips On Interacting With People With Disabilities
United Spinal Association
Mission Statement
United Spinal Association is dedicated to enhancing the quality of life of all people living with
spinal cord injuries and disorders, including veterans, and providing support and information to
loved ones, care providers and professionals.
Who We Are
United Spinal Association is the largest non-profit in the United States dedicated to helping people
living with SCI/D. We are a 501(c)(3) national disability rights and veterans service organization
founded in 1946. United Spinal Association provides active-lifestyle information, peer support and
advocacy that empowers people with SCI/D to achieve their highest potential in all facets of life.
United Spinal played a significant role in writing the Americans with Disabilities Act, the landmark
civil rights law of 1990 that protects people with disabilities from discrimination. It has also made
important contributions to the Fair Housing Amendments Act and the Air Carrier Access Act,
and was instrumental in getting New York City to create sidewalk curb ramps and accessible public
transportation that is currently used as a model for many cities nationwide.
Who We Serve
United Spinal Association’s diverse membership includes wheelchair-users, veterans with disabilities
and people living with multiple sclerosis, amyotrophic lateral sclerosis, post-polio, spina bifida and
other spinal cord disorders. Each year, United Spinal Association helps thousands of people of all
ages overcome the daily challenges of living life with a disability. And we extend our unending
support to those most important in their lives––their family members and caregivers.
Publications
To download any of United Spinal Association’s informative publications free of charge, visit
http://www.spinalcord.org/publications/ or call 800-444-0120 to order printed copies.
Donations
United Spinal Association receives very little government funding. Its programs and services
depend on individuals like you and your tax-deductable gifts. If you would like to make a donation
to support United Spinal’s mission, please visit www.unitedspinal.org/donations
or call 800-404-2899.
Membership
Membership in United Spinal Association is free and open to all individuals who are living with
a spinal cord injury or disease, their family members, friends, and healthcare providers. For more
information, visit http://www.unitedspinal.org/join-united-spinal-association/.
Training
United Spinal Association can customize a “Disability Etiquette” training session at a reasonable
cost for your company, organization, or institution. Its experienced staff can plan a program based
on your needs. For more information, please contact info@unitedspinal.org.
United Spinal Association
120-34 Queens Boulevard #320, Kew Gardens, NY, 11415
718•803•3782 www.unitedspinal.org
Copyright © 2015 United Spinal Association. All Rights Reserved.
2
DISABILITY ETIQUETTE
Contents
About Us……………………………………………………………………………………………………………2
Publications………………………………………………………………………………………………………..2
Donations…………………………………………………………………………………………………………..2
Membership……………………………………………………………………………………………………….2
Training……………………………………………………………………………………………………………..2
Introduction……………………………………………………………………………………………………….4
The Basics…………………………………………………………………………………………………………..4
Ask Before You Help……………………………………………………………………………………………4
Be Sensitive About Physical Contact……………………………………………………………………..4
Think Before You Speak……………………………………………………………………………………….6
Don’t Make Assumptions……………………………………………………………………………………..6
Respond Graciously to Requests……………………………………………………………………………6
Terminology Tips………………………………………………………………………………………………..6
People Who Use Wheelchairs or Other Mobility Devices………………………………………..7
People Who Are Blind……………………………………………………………………………………….11
People With Low Vision…………………………………………………………………………………….15
People Who Are Deaf or Have a Hearing Loss……………………………………………………..15
People With Speech Disabilities………………………………………………………………………….19
Persons of Short Stature……………………………………………………………………………………..21
People With Cerebral palsy…………………………………………………………………………………21
People With Tourette Syndrome………………………………………………………………………….22
People Who Look Different………………………………………………………………………………..22
People With Hidden Disabilities…………………………………………………………………………23
People With Epilepsy or Seizure Disorders…………………………………………………………..23
People With Multiple Chemical Sensitivity and Respiratory Disabilities…………………….. 25
People With HIV and AIDS………………………………………………………………………………26
People With Psychiatric Disabilities or Mental Illness……………………………………………27
People With Developmental Disabilities………………………………………………………………29
People with Learning Disabilities………………………………………………………………………..30
People with Traumatic (or Acquired) Brain Injury………………………………………………….30
People Who Use Service Animals………………………………………………………………………..31
Emergency Evacuation Procedures for People With Disabilities………………………………33
Autistic People………………………………………………………………………………………………….33
Conflict Management………………………………………………………………………………………..35
A Final Word……………………………………………………………………………………………………35
Signage………………………………………………………………………………………………. Back Cover
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
3
Introduction
The United States Census Bureau reports that approximately 56.7 million
Americans have a disability. This booklet is for anyone—with or without
a disability—who wants to interact more effectively with people with
disabilities. The Americans with Disabilities Act of 1990 was conceived
with the goal of integrating people with disabilities into all aspects of
life, particularly the workplace and the marketplace. Sensitivity toward
people with disabilities is not only in the spirit of the ADA, it makes good
business sense. It can help you expand your practice, better serve your
customers or develop your audience. When supervisors and co-workers use
disability etiquette, employees with disabilities feel more comfortable and
work more productively. Practicing disability etiquette is an easy way to
make people with disabilities feel welcome.
You don’t have to feel awkward when dealing with a person who has a
disability. This booklet provides some basic tips for you to follow. And if
you are ever unsure how to interact with a person who has a disability, just
ask!
The Basics
ASK BEFORE YOU HELP
Just because someone has a disability, don’t assume she needs help.* If the
setting is accessible, people with disabilities can usually get around fine.
Adults with disabilities want to be treated as independent people. Offer
assistance only if the person appears to need it. A person with a disability
will oftentimes communicate when she needs help. And if she does want
help, ask how before you act.
BE SENSITIVE ABOUT PHYSICAL CONTACT
Some people with disabilities depend on their arms for balance. Grabbing
them, even if your intention is to assist, could knock them off balance.
Avoid patting a person on the head or touching his wheelchair, scooter
or cane. People with disabilities consider their equipment part of their
personal space.
* Note: We want you to think of people who have disabilities as individuals—your friends, your
co-workers, your neighbors—so rather than use the amorphous group term “they” for people with
disabilities, we use the pronouns “he” or “she” throughout this booklet.
4
DISABILITY ETIQUETTE
Speak directly to
a person with
a disability…
…not to his
companion or
sign language
Interpreter.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
5
THINK BEFORE YOU SPEAK
Always speak directly to the person with a disability, not to his companion,
aide or sign language interpreter. Making small talk with a person who
has a disability is great; just talk to him as you would with anyone else.
Respect his privacy. If you ask about his disability, he may feel like you are
treating him as a disability, not as a human being. However, many people
with disabilities are comfortable with questions about their disability after
getting to know someone. A simple “I don’t feel comfortable sharing that”
by the person with a disability can set the tone if it is not something that
he/she is willing to share.
DON’T MAKE ASSUMPTIONS
People with disabilities are the best judge of what they can or cannot do.
Don’t make decisions for them about participating in any activity.
Depending on the situation, it could be a violation of the ADA to exclude
people because of a presumption about their limitations.
RESPOND GRACIOUSLY TO REQUESTS
When people who have disabilities ask for an accommodation at your
business, it is not a complaint. It shows they feel comfortable enough in
your establishment to ask for what they need. And if they get a positive
response, they will probably come back again and tell their friends about
the good service they received.
Terminology Tips
Say “person with a disability” rather than “disabled
person.” Say “people with disabilities” rather than “the disabled.” For
specific disabilities, saying “person with Tourette syndrome” or “person who
has cerebral palsy” is usually a safe bet. Still, individuals do have their own
preferences. If you are not sure what words to use, ask.
PUT THE PERSON FIRST.
Avoid outdated terms like “handicapped, crippled or retarded.” Be aware
that many people with disabilities dislike jargony, euphemistic terms like
“physically challenged” and “differently abled.” Say “person who uses a
wheelchair” rather than “confined to a wheelchair” or “wheelchair bound.”
The wheelchair is what enables the person to get around and participate in
society; it’s liberating, not confining.
6
DISABILITY ETIQUETTE
With any disability, avoid negative, disempowering words like “victim” or
“sufferer.” Say “person with AIDS” instead of “AIDS victim” or “person
who suffers from AIDS.”
It’s okay to use idiomatic expressions when talking to people with
disabilities. For example, saying, “It was good to see you,” and “See you
later,” to a person who is blind is completely acceptable; they use these
expressions themselves all the time.
Many people who are Deaf communicate with sign language and consider
themselves to be members of a cultural and linguistic minority group. They
refer to themselves as Deaf with a capital “D,” and may be offended by the
term “hearing impaired.” Others may not object to the term, but in general
it is safest to refer to people who have hearing loss but who communicate
in spoken language as “hard of hearing” and to people with profound
hearing losses as Deaf or deaf.
People Who Use Wheelchairs or Other Mobility
Devices
have different disabilities and varying
abilities. Some can use their arms and hands. Some can get out of their
wheelchairs and even walk for short distances.
PEOPLE WHO USE WHEELCHAIRS
People who use wheelchairs are individuals, not equipment. Don’t lean
over someone who uses a wheelchair to shake another person’s hand or ask
a wheelchair user to hold coats. Setting your drink on the desktop attached
to someone’s wheelchair is a definite no-no.
u Don’t push or touch a person’s wheelchair; it’s part of her personal space.
If you help someone down a curb without waiting for instructions, you
may dump her out of the chair. You may detach the chair’s parts if you
lift it by the handles or the footrest.
u Keep the ramps and wheelchair-accessible doors to your building
unlocked and unblocked. Under the ADA, displays should not be in
front of entrances, wastebaskets should not be in the middle of aisles,
and boxes should not be stored on ramps.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
7
Keep accessible
paths of
travel clear.
8
DISABILITY ETIQUETTE
u Be aware of a person’s reach limits. Place as many items as possible
within their grasp. And make sure there is a clear path of travel to
shelves and display racks. When talking to a person using a wheelchair,
grab your own chair and sit at her level. If that’s not possible, stand at a
slight distance, so that she isn’t straining her neck to make eye contact
with you.
u If the service counter at your place of business is too high for a person
using a wheelchair to see over, step around it to provide service. Have a
clipboard handy if filling in forms or providing signatures is expected.
A business may also want to make sure employees are prepared to angle
down or detach a key pad so a person using a wheelchair can sign their
electronic signature after making a credit card purchase.
u If your building has different routes through it, be sure that signs
direct people to the accessible routes around the facility. People who
use canes or crutches also need to know the easiest way to get around a
place, but stairs may be easier for them than a ramp. Ensure that security
guards and receptionists can answer questions about the most accessible
way around the building and grounds, including the location of elevators.
u People who use canes or crutches need their arms to balance themselves,
so never grab them. People who have limited mobility may lean on a
door for support as they open it. Pushing the door open from behind
or unexpectedly opening the door may cause them to fall. Even
pulling out or pushing in a chair may present a problem. Always ask
before offering help.
u If you offer a seat to a person who has limited mobility, keep in mind
that chairs with arms or with higher seats are easier for some people
to use.
u Falls are a big problem for people who have limited mobility. Be sure to
set out adequate warning signs after washing floors. Also put out mats
on rainy or snowy days to keep the floors as dry as possible. (Make sure
they don’t bunch up and make the floor impassable.)
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
9
Don’t ask a
person using a
wheelchair to
hold things for
you.
Respect her
personal space.
10
DISABILITY ETIQUETTE
u People who do not have a visible disability may have needs related
to their mobility. For example, a person with a respiratory or heart
condition may have trouble walking long distances or walking quickly.
Be sure that your museum, hotel or department store has ample benches
for people to sit and rest on.
u Some people have limited use of their hands, wrists or arms. Be
prepared to offer assistance with reaching, grasping or lifting objects,
opening doors and display cases, and operating vending machines and
other equipment.
People Who Are Blind
know how to orient themselves and get around
on the street. They are competent to travel unassisted, though they may
use a cane or a guide dog. A person may have a visual disability that is
not obvious. Be prepared to offer assistance—for example in reading—
when asked.
PEOPLE WHO ARE BLIND
u Identify yourself before you make physical contact with a person who is
blind. Tell him your name and your role if it’s appropriate, such as
security guard, usher, case worker, receptionist or fellow student. And
be sure to introduce him to others who are in the group, so that he’s
not excluded.
u If a new customer or employee is blind or has low vision, offer him a
tour of your facility.
u If you have changed your facility (i.e., rearranged the furniture) notify
your customers who are blind of the changes.
u People who are blind may need their arms for balance, so offer
your arm—don’t take his—if he needs to be guided. (It is however
appropriate to guide a blind person’s hand to a banister or the back of a
chair to help direct him to a stairway or a seat.)
u If the person has a guide dog, walk on the side opposite the dog. As you
are walking, describe the setting, noting any obstacles, such as stairs
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
11
If a person
who is blind
needs to be
guided…
…offer
your arm—
don’t take his.
12
DISABILITY ETIQUETTE
(‘up’ or ‘down’) or a big crack in the sidewalk. Other hazards include:
revolving doors, half-opened filing cabinets or doors, and objects
protruding from the wall at head level such as hanging plants or lamps.
If you are going to give a warning, be specific. Hollering “Look out!”
does not tell the person if he should stop, run, duck or jump.
u If you are giving directions, give specific, non-visual information.
Rather than say, “Go to your right when you reach the office supplies,”
which assumes the person knows where the office supplies are, say,
“Walk forward to the end of this aisle and make a full right.”
u If you need to leave a person who is blind, inform him you are leaving
and ask if he needs anything before you leave.
u Don’t touch the person’s cane or guide dog. The dog is working and
needs to concentrate. The cane is part of the individual’s personal space.
If the person puts the cane down, don’t move it. Let him know if it’s in
the way.
u Offer to read written information—such as the menu, merchandise
labels or bank statements—to customers who are blind. Count out
change so that they know which bills are which.
u If you serve food to a person who is blind, let him know where it is on
the plate according to a clock orientation (12 o’clock is furthest from
them, 6 o’clock is nearest). Remove garnishes and anything that is not
edible from the plate. Some patrons may ask you to cut their food; this
can be done in the restaurant’s kitchen before the meal is served.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
13
Be specific
when giving
directions…
…to people who
are blind or have
low vision.
14
DISABILITY ETIQUETTE
People With Low Vision
may need written material in large print.
A clear font with appropriate spacing is just as important as the type
size. Labels and signs should be clearly lettered in contrasting colors. It is
easiest for most people with low vision to read bold white letters on black
background. Avoid using all uppercase letters because it is more difficult
for people with low vision to distinguish the end of a sentence.
A PERSON WHO HAS LOW VISION
u Good lighting is important, but it shouldn’t be too bright. In fact, very
shiny paper or walls can produce a glare that disturbs people’s eyes.
u Keep walkways clear of obstructions. If people with low vision regularly
use your facility as customers or employees, inform them about any
physical changes, such as rearranged furniture, equipment or other items
that have been moved.
People Who Are Deaf or Have a Hearing Loss
is an entirely different language from English,
with a syntax all its own. Lip reading is difficult for people who are Deaf if
their first language is ASL because the majority of sounds in English are
formed inside the mouth, and it’s hard to speech read a second language.
AMERICAN SIGN LANGUAGE
People who have a hearing loss, however, communicate in English.
They use some hearing, but may rely on amplification and/or seeing the
speaker’s lips to communicate effectively.
There is a range of communication preferences and styles among people
with hearing loss that cannot be explained in this brief space. It is helpful
to note that the majority of people who incurred a hearing loss as adults
do not communicate with sign language, do use English, and may be
candidates for writing and assistive listening devices to help improve
communication. People with cochlear implants, like other people with
hearing loss, will usually inform you what works best for them.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
15
When an
exchange of
information
is complex,
the most
effective way to
communicate
with…
…a person
who is Deaf
is through
a qualified
sign language
interpreter.
16
DISABILITY ETIQUETTE
u When the exchange of information is complex (e.g., during a job
interview or doctor’s visit or when reporting a crime) the most effective
way to communicate with a native signer is through a qualified sign
language interpreter. For a simple interaction (e.g., ordering in a
restaurant or registering for a hotel room) writing back and forth is
usually OK.
u Follow the person’s cues to find out if she prefers sign language,
gesturing, writing or speaking. If you have trouble understanding the
speech of a person who is deaf or hard of hearing, let her know.
u When using a sign language interpreter, look directly at the person who
is deaf, and maintain eye contact to be polite. Talk directly to the person
(‘What would you like?’), rather than to the interpreter (‘Ask her what
she’d like.’).
u People who are deaf need to be included in the decision-making process
for issues that affect them; don’t decide for them.
u Before speaking to a person who is deaf or has a loss of hearing, make
sure that you get her attention. Depending on the situation, you can
extend your arm and wave your hand, tap her on the shoulder or flicker
the lights.
u Rephrase, rather than repeat, sentences that the person does not
understand.
u When talking, face the person. A quiet, well-lit room is most conducive
to effective communication. If you are in front of the light source (e.g., a
window) with your back to it, the glare may obscure your face and make
it difficult for the person who is hard of hearing to speech read.
u Speak clearly. Most people who have a hearing loss count on watching
people’s lips as they speak to help them understand. Avoid chewing
gum, smoking or obscuring your mouth with your hand while speaking.
u There is no need to shout. If the person uses a hearing aid, it will be
calibrated to normal voice levels; your shout will just distort the words.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
17
Do not obscure
your face when
communicating
with a person
who has a
hearing loss.
18
DISABILITY ETIQUETTE
u People who are deaf and some who have a hearing loss or speech
disabilities make and receive telephone calls with the assistance of
various technologies including a TTY (short for teletypewriter) or a
video relay service. VRS enables a person who is deaf or has a hearing
loss to make and receive telephone calls through a communications
assistant who is a qualified American Sign Language Interpreter. For
many people who are deaf or have a hearing loss, VRS is closer to
“functionally equivalent” telephone services than any other form of relay
service. For American Sign Language users, VRS conversations flow
more smoothly, naturally, and faster than communicating by typing.
u When a TTY user calls a business that does not have a TTY, she places
the call through her state’s relay service. Likewise, a business that does
not have a TTY can reach a customer who is a TTY user through the
relay service. If you receive a relay call, the operator will identify it as
such. Please do not hang up; this is the way that people who are deaf
are able to place an order at your pizza parlor, call your store to find out
what hours you are open, or make a reservation at your restaurant.
People With Speech Disabilities
is deaf, uses a voice prosthesis or has a
stammer or other type of speech disability may be difficult to understand.
A PERSON WHO HAS HAD A STROKE,
u Give the person your full attention. Don’t interrupt or finish the person’s
sentences. If you have trouble understanding, don’t nod. Just ask him
to repeat. In most cases the person won’t mind and will appreciate your
effort to hear what he has to say.
u If you are not sure whether you have understood, you can repeat
for verification.
u If, after trying, you still cannot understand the person, ask him to write
it down or to suggest another way of facilitating communication.
u A quiet environment makes communication easier.
u Don’t tease or laugh at a person with a speech disability. The ability to
communicate effectively and to be taken seriously is important to all of us.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
19
If you
have trouble
understanding a
person with…
…a speech
disability ask
him to repeat.
20
DISABILITY ETIQUETTE
Persons of Short Stature
that
can cause dwarfism and that result in the person being 4 feet 10 inches
or less in height. For an adult, being treated as cute and childlike can be a
tough obstacle.
THERE ARE 200 DIAGNOSED TYPES OF GROWTH-RELATED DISORDERS
u Be aware of having necessary items within the person’s reach to the
maximum extent possible.
u Be aware that persons of short stature count on being able to use
equipment that is at their height. Be sensitive about not using lower
telephones, bank counters and urinals if they are in limited supply.
u As with people who have other disabilities, never pet or kiss a person of
short stature on the head.
u Communication can be easier when people are at the same level.
Persons of short stature have different preferences. You might kneel to be
at the person’s level; stand back so you can make eye contact without the
person straining her neck (this can be hard to do in a crowded room); or sit
in a chair. Act natural and follow the person’s cues.
People With Cerebral Palsy
AS A RESULT OF INJURY TO THE CENTRAL NERVOUS SYSTEM,
cerebral palsy have difficulty controlling their muscles.
people with
u Many people with CP have slurred speech and involuntary body
movements. Your impulse may be to discount what they have to say, based
on their appearance. Monitor your responses and interact with the person
as you would with anyone else.
u A person who may appear to be drunk, sick or have a medical
emergency might in fact have CP or another disability. Get the facts before
acting on your first impression, whether the situation is business, social or
law enforcement.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
21
People With Tourette Syndrome
may make vocalizations or gestures
such as tics that they cannot control. A small percentage of people with
Tourette syndrome involuntarily say ethnic slurs or obscene words. An
employee or other person with Tourette syndrome will benefit from the
understanding and acceptance of co-workers and others.
PEOPLE WITH TOURETTE SYNDROME
u If a person with Tourette makes vocalizations during a conversation,
simply wait for her to finish, and then calmly continue.
u The more the person tries to contain these urges, the more the urges
build up. It may be helpful for a person with Tourette to have the option
to leave the meeting or conversation temporarily to release the build-up
in a private place.
People Who Look Different
confronts people who may not be limited in their
life activities, but who are treated as if they have a disability because of
their appearance. People with facial differences, such as cleft lip or palate,
cranio-facial disfigurement, or a skin condition; people who are above or
below the average height or weight; people who may display visible effects
of medication, such as a tremor—in short, people who look different—
have the frequent experience of finding people staring at them, looking
away or looking through them as if they are invisible.
A DIFFERENT ISSUE
u Everyone needs to have a positive self-image to be a fully participating
member of society. Be sure that you don’t contribute to stigmatizing
people who look different.
u If the situation is appropriate, strike up a conversation and include the
person in whatever is going on.
22
DISABILITY ETIQUETTE
People With Hidden Disabilities
A person may make a request or
act in a way that seems strange to you. That request or behavior may be
disability-related.
NOT ALL DISABILITIES ARE APPARENT.
For example, you may give seemingly simple verbal directions to
someone, but the person asks you to write the information down. He
may have a learning disability that makes written communication easier
for him. Or a person may ask to sit, rather than stand, in line. This person
may be fatigued from a condition such as cancer, or may be feeling the
effects of medication.
Even though these disabilities are hidden, they are real. Please respect
the person’s needs and requests whenever possible.
People With Epilepsy or Seizure Disorders
EPILEPSY IS A NEUROLOGICAL CONDITION characterized
by seizures that
happen when the electrical system of the brain malfunctions. The seizures
may be convulsive, or the person may appear to be in a trance. During
complex partial seizures, the person may walk or make other movements
while he is, in effect, unconscious.
u If a person has a seizure, you cannot do anything to stop it. If he has
fallen, be sure his head is protected and wait for the seizure to end.
u When a seizure has ended, the person may feel disoriented and
embarrassed. Try to ensure that he has privacy to collect himself.
u Be aware that strobe lights can trigger seizures in
some people.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
23
Try to avoid using
sprays or other
fumy products
when customers
are in your store.
24
DISABILITY ETIQUETTE
People With Multiple Chemical Sensitivity
(MCS) and Respiratory Disabilities
such as asthma or
emphysema react to toxins in the air. Stale air, fumes from cleaning
products, perfume, carpeting, air freshener or even the fumes from magic
markers can trigger a severe reaction.
PEOPLE WITH MCS AND RESPIRATORY DISABILITIES
u Try to avoid spray-cleaning tables, windows or other surfaces while
people are in your place of business. If you must use a spray product,
spray or pour it closely into the cloth, not into the air. Use less-toxic
products when possible. Request that staff who have contact with the
public go easy on fragranced body-care products like cologne, hair spray,
hand lotion, and after-shave.
u Maintaining good ventilation and indoor air quality will not only
benefit your customers who have MCS and respiratory disabilities, it
will also help you and all of your employees stay healthier and more
alert.
u Second-hand smoke can be particularly harmful to people with MCS
or respiratory disabilities. Follow and enforce no-smoking regulations,
including in restrooms and stairwells. Discourage smokers from
congregating at the entrance to your business. If appropriate, designate
a separate smoking area where the door is kept closed and the air
ventilates to the outside.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
25
People With HIV and AIDS
PEOPLE WITH HUMAN IMMUNODEFICIENCY VIRUS or
Autoimmune
Deficiency Syndrome have impaired immune systems, so their bodies have
trouble fighting off infections.
u You can’t catch HIV from casual contact such as shaking hands, so don’t
be afraid of touching or being touched by a person with AIDS.
u A person with HIV or AIDS, however, is at significant risk of picking
up an airborne infection. Be conscious of not putting someone else at
risk. If you have a respiratory infection or any other easily transmittable
illness, be considerate of all your customers and employees and stay
home, if possible.
u Many people with AIDS feel stigmatized. By simply greeting or
shaking the person’s hand, you are letting him know that he is accepted.
It will mean a lot to him.
A WORD ABOUT CONFIDENTIALITY:
You may really care or you may just be curious
about a person with a disability who is in crisis,
suddenly ill, or misses work for unexplained
reasons. In spite of your concern, please respect
the privacy of a person with a disability. Allow
him to discuss his situation if and when he feels
comfortable doing so.
26
DISABILITY ETIQUETTE
People With Psychiatric Disabilities or
Mental Illness
may at times have difficulty
coping with the tasks and interactions of daily life. Their disorder may
interfere with their ability to feel, think or relate to others. Most people
with psychiatric disabilities are not violent. One of the main obstacles they
face is the attitudes that people have about them. Because it is a hidden
disability, chances are you will not even realize that the person has a
mental health condition.
PEOPLE WITH PSYCHIATRIC DISABILITIES
u Stress can affect the person’s ability to function. Try to keep the pressure
of the situation to a minimum.
u People who have psychiatric disabilities have varying personalities and
different ways of coping with their disability. Some may have trouble
picking up on social cues; others may be supersensitive. One person may
be very high energy, while someone else may appear sluggish. Treat each
person as an individual. Ask what will make him most comfortable and
respect his needs to the maximum extent possible.
u In a crisis, stay calm and be supportive as you would with anyone. Ask
how you can help, and find out if there is a support person who can be
sent for. If appropriate, you might ask if the person has medication that
he needs to take.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
27
Always
ask before
you help.
28
DISABILITY ETIQUETTE
People With Developmental Disabilities
PEOPLE WITH DEVELOPMENTAL DISABILITIES LEARN SLOWLY. They
have a
hard time using what they have learned and applying it from one setting or
situation to another.
u Speak to the person in clear sentences, using simple words and
concrete—rather than abstract—concepts. Help her understand a
complex idea by breaking it down into smaller parts.
u Don’t use baby talk or talk down to people who have developmental
disabilities. Gauge the pace, complexity, and vocabulary of your speech
according to theirs.
u Remember that the person is an adult and, unless you are informed
otherwise, can make her own decisions.
u People with developmental disabilities may be anxious to please.
During an interview, the person may tell you what she thinks you
want to hear. In certain situations, such as law enforcement or a
doctor’s examination, it can have grave consequences if your interview
technique is not effective. Questions should be phrased in a neutral
way to elicit accurate information. Verify responses by repeating each
question in a different way.
u It can be difficult for people with developmental disabilities to make
quick decisions. Be patient and allow the person to take their time.
u Clear signage with pictograms can help a person who has
developmental disabilities to find her way around a facility.
u People with developmental disabilities often rely on routine and on the
familiar to manage work and daily living. Be aware that a change in the
environment or in a routine may require some attention and a period of
adjustment.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
29
People With Learning Disabilities
that interfere with
a person’s ability to receive, express or process information. Although
they have certain limitations, most people with learning disabilities have
average or above-average intelligence. You may not realize that the person
has a learning disability because he functions so well. Or you may be
confused about why such a high-functioning person has problems in one
aspect of his work.
LEARNING DISABILITIES ARE LIFELONG DISORDERS
u People with dyslexia or other reading disabilities have trouble reading
written information. Give them verbal explanations and allow extra
time for reading.
u Don’t be surprised if you tell someone very simple instructions and
he requests that you write them down. Because spoken information gets
“scrambled” as he listens, a person who has a learning disability such as
auditory processing disorder may need information demonstrated or in
writing.
u Ask the person how you can best relay information. Be direct in your
communication. A person with a learning disability may have trouble
grasping subtleties.
u It may be easier for the person to function in a quiet environment
without distractions, such as a radio playing, people moving around or
loudly patterned curtains.
People With Traumatic (or Acquired)
Brain Injury
have had damage to the brain
usually as the result of trauma, such as an accident or stroke.
PEOPLE WITH TRAUMATIC BRAIN INJURY
u Some of the factors that affect people with learning disabilities also
apply to people with traumatic brain injury. People with brain injury may have
a loss of muscle control or mobility that is not obvious. For example, a person
may not be able to sign her name, even though she can move her hand.
30
DISABILITY ETIQUETTE
u A person with a brain injury may have poor impulse control. The person
may make inappropriate comments and may not understand social cues
or “get” indications that she has offended someone. In her frustration to
understand, or to get her own ideas across, she may seem pushy. All of
these behaviors arise as a result of the injury.
u A person with a brain injury may be unable to follow directions due to
poor short-term memory or poor directional orientation. She may ask
to be accompanied, or she may use a guide dog for orientation, although
she does not appear to be mobility impaired.
u If you are not sure that the person understands you, ask if she would like
you to write down what you were saying.
u The person may have trouble concentrating or organizing her thoughts,
especially in an over-stimulating environment, like a crowded movie
theater or transportation terminal. Be patient. You might suggest going
somewhere with fewer distractions.
People Who Use Service Animals
are Deaf, blind or have low vision, or who have
traumatic brain injury, seizure disorder, or a range of other disabilities may
use a service animal to assist them with daily living.
SOME PEOPLE WHO
u While you may inquire whether an animal is a service animal, the
person may not have information identifying it as such. This means
that in general, you will need to modify a “no animals” policy to allow
the person to enter with her service animal. Barring a direct threat to
health and safety, this requirement of the ADA is generally thought to
take precedence over any health codes, such as those for restaurants, and
personal preferences, such as those of taxi drivers, prohibiting pets.
u Service animals are generally highly trained and well behaved. You may
ask the person to remove the animal if she does not have the animal
under her control. Do not touch the service animal without permission.
The animal may be adorable, but it is on the job.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
31
Don’t make
decisions for
people with
disabilities…
… about what
they can or
can’t do.
32
DISABILITY ETIQUETTE
Emergency Evacuation Procedures for People
With Disabilities
PEOPLE WITH DISABILITIES MUST BE CONSIDERED IN ANY FACILITY’S
EVACUATION PLAN.
u Compile a voluntary list of people with disabilities who are regulars
at your facility, such as employees, students or residents. While you
are compiling this list, let people know that even though they may not
consider themselves of having a disability, they should be included
if they may need help during an emergency. For example, this might
apply to someone whose asthma may be triggered by stress or smoke.
Keep the list updated to include people who are living with temporary
disabilities, such as a pregnant woman or someone with a broken leg.
u Interview each individual on the list to plan the most effective way to
assist them in case of an emergency. For example, a person with a
cognitive disability may get confused and need assistance in following
directions.
u Also develop a plan, including a voluntary sign-in, for an emergency
that may affect people who are not attached to the facility, such as
customers, theatergoers, patients or other members of the public.
u Practice the evacuation procedures and keep your plans up to date.
Autistic People
when meeting the
needs of autistic people that can help them be safe, included, respected,
and equal participants in all kinds of activities. Remember that the things
listed here are access needs and not conveniences or luxuries. Each autistic
person is different and may need more or less or different accommodations.
THERE ARE SEVERAL IMPORTANT POINTS TO CONSIDER
u Please use respectful language, including considering identity-first
(autistic) vs. person-first (person with autism) language. Many in the
autistic community strongly prefer identity-first language and should
have their wishes respected. Respectful language also means not using
functioning (high vs. low functioning) labels to describe people.
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
33
u Do not insist on eye contact. Eye contact can be very distracting or even
uncomfortable and threatening to many autistic people.
u It is important to understand that autistic people communicate in
many different ways, from spoken words to typing to gestures and sounds.
Meaningful interaction with autistic people must involve respecting their
manner of communication. Make sure to allow for sufficient processing
time when having a conversation with or asking questions of an autistic
person. Offering a text-based way to communicate (text, instant message,
etc.) is a good alternative for people who may be uncomfortable with oral
speech in some or all settings.
u Bear in mind that an autistic person’s tone of voice, body language, or
facial expressions may not match what they intend to communicate. Do
not expect an autistic person to read nonverbal communication. When
necessary, be clear and direct.
u Large groups can be over-stimulating or overwhelming for many
autistic people. It can be difficult for autistic people to time their responses
or understand the social nuances of large groups. Small groups in quiet
rooms can be a good option for meaningful autistic participation.
u Some autistic people have difficulty understanding auditory
information, especially when there is background noise. It is helpful
to minimize non-essential sensory input to create a safer sensory
environment and facilitate autistic communication. These can be things
as simple as closing doors to shut out background noise or finding
environments to meet that are quiet.
u To accommodate sensory needs, refrain from wearing perfumes or
scented toiletries. Loud noises should be avoided. Lighting is important
as well. Fluorescent lighting can cause severe sensory processing issues, so
natural light or soft, incandescent lighting is better. Ask before using flash
photography as it can cause sensory overload, as well as seizures in the ⅓
of autistic people who have seizures and/or epilepsy.
It can be helpful to make sure your agenda or plans are concrete and
34
DISABILITY ETIQUETTE
presented in advance, then adhered to. Sudden changes and transitions are
difficult for many autistic people.
(Contributed by the Autistic Self Advocacy Network,
http://autisticadvocacy.org/)
Conflict Management
between people with disabilities and
the places they visit for work, recreation, health care or education.
These conflicts are usually the result of misunderstanding or a lack of
information. Sometimes conflicts develop between people with disabilities
who have conflicting needs. For example, a person who has a hearing
loss cannot hear the proceedings with the window open, but a person
with multiple chemical sensitivity needs the window open for fresh air;
someone who uses a service dog may run into a conflict with a person who
has an anxiety disorder and an extreme fear of dogs.
SOMETIMES CONFLICTS ARISE
All of these situations call for flexibility, patience, creativity, and open
communication—a willingness to listen to the other guy’s perspective and
to learn.
Sometimes good faith efforts are not enough, and parties have difficulty
working out their differences. In these cases, consider using the services of
a skilled mediator.
A Final Word
are individuals with families, jobs, hobbies,
likes and dislikes, and problems and joys. While the disability is an integral
part of who they are, it alone does not define them. Don’t make them into
disability heroes or victims. Treat them as individuals.
PEOPLE WITH DISABILITIES
United Spinal Association 2009-0819 AP
© 2015 United Spinal Association
WWW.UNITEDSPINAL.ORG • 1.800.444.0120
35
Signage
Note accessibility of your business or program by using the symbols below
in advertising, on flyers, and as signage at the location of the service. Be
sure to use the verbal description, along with the symbol. As signage,
enlarge the symbol and place it where it will be most visible.
WHEELCHAIR ACCESS
ASSISTIVE LISTENING
FOR PEOPLE WHO HAVE A
HEARING LOSS
SIGN-LANGUAGE
INTERPRETER
TTY/TDD
DISABILITY ETIQUETTE
A publication of
120-34 Queens Blvd. #320
Kew Gardens, NY 11415
718•803•3782
www.unitedspinal.org
Illustrations by Yvette Silver
Disability Studies Quarterly – the first journal in the field of disability studies
DSQ — Home > Vol 32, No 2 (2012) > Munyi
By: Chomba Wa Munyi
Past and Present Perceptions Towards Disability: A Historical Perspective
Keywords:
Literature review, history, international perceptions
Abstract
Over the years, perceptions towards disability have varied significantly from one
community to another. Limited literature in disability history, however, continues to
pose a great challenge to students of disability studies in their endeavor to trace the
development and formation of perceptions towards persons with disabilities. It is
towards this end that this article seeks to present a coherent literature review on crosscultural factors that influence perceptions towards children and adults with disabilities
from a historical perspective. The final section provides a few examples that illustrate
positive steps taken by the international community, and several countries, to improve
disability perception.
As Roeher (1969) observes, an examination of attitudes towards people with disabilities across
culture suggests that societal perceptions and treatment of persons with disabilities are neither
homogeneous nor static. Greek and Roman perceptions of disability and illness are reflected in
the literature.
Among the Greeks, the sick were considered inferior (Barker 1953), and in his Republic, Plato
recommended that the deformed offspring of both the superior and inferior be put away in
some “mysterious unknown places” (Goldberg & Lippman 1974). On the other hand, “Early
Christian doctrine introduced the view that disease is neither a disgrace nor a punishment for
sin but, on the contrary, a means of purification and a way of grace.”(Baker et al. 1953)
During the 16th century, however, Christians such as Luther and John Calvin indicated that the
mentally retarded and other persons with disabilities were possessed by evil spirits. Thus, these
1
men and other religious leaders of the time often subjected people with disabilities to mental
and/or physical pain as a means of exorcising the spirits (Thomas 1957).
In the 19th century, supporters of social Darwinism opposed state aid to the poor and
otherwise handicapped. They reasoned that the preservation of the “unfit” would impede the
process of natural selection and tamper the selection of the “best” or “fittest” elements
necessary for progeny (Hobbs 1973).
Lukoff and Cohen (1972) note that some communities banished or Ill-treated the blind while
others accorded them special privileges. In a comparison of the status of persons with
disabilities in a number of non-occidental societies, Hanks and Hanks (1948) found wide
differences. Persons with disabilities were completely rejected by some cultures, in others they
were outcasts, while in some they were treated as economic liabilities and grudgingly kept alive
by their families. In other settings, persons with disabilities were tolerated and treated in
incidental ways, while in other cultures they were given respected status and allowed to
participate to the fullest extent of their capability.
Variations in the treatment of persons with disabilities are manifest in Africa as in other parts of
the world (Amoako 1977). Among the Chagga in East Africa, the physically handicapped were
perceived as pacifiers of the evil spirits. Hence, care was taken not to harm the physically
handicapped. Among the citizens of Benin (formerly Dahomey in West Africa), constables were
selected from those with obvious physical handicaps.
In some communities in Benin, children born with anomalies were seen as protected by
supernatural forces. As such they were accepted in the community because they were believed
to bring good luck (Wright 1960). Nabagwu (1977) observed that among the Ibo of Nigeria,
treatment of persons with disabilities varied from pampering to total rejection.
Diversifications in perception of persons with disabilities exist in Ghana as they do in other
places in Africa. Among the Ashanti of central Ghana, traditional beliefs precluded men with
physical defects, such as amputations from becoming chiefs. This is evident in the practice of
destooling a chief if he acquires epilepsy (Rottray 1952; Sarpong 1974). Children with obvious
deviations were also rejected. For instance, an infant born with six fingers was killed upon birth
(Rattray 1952). Severely retarded children were abandoned on riverbanks or near the sea so
that such “animal-like children” could return to what was believed to be their own kind
(Danquah 1977).
2
In contrast, the Ga from Accra region in Ghana, treated the feeble-minded with awe.They
believed the retarded were the reincarnation of a deity. Hence, they were always treated with
great kindness, gentleness and patience (Field 1937).
The degree to which persons with disabilities are accepted within a society is not directly
proportionate to that society’s financial resources and/or technical knowhow. Lippman (1972)
observed that in many European countries, such as Denmark and Sweden, citizens with
disabilities are more accepted than in the United States. He also found that, these countries
provided more effective rehabilitation services. The prevalent philosophy in Scandinavian
countries is acceptance of social responsibility for all members of the society, without regard to
the type or degree of disabling condition.
While throughout the world many changes have taken place in status and treatment of persons
with disabilities, the remnants of tradition and past belief influence present-day practices
affecting such group (Du Brow, 1965; Wright 1973).
Franzen Bjorn (1990) observed that in some communities in Kenya and Zimbabwe, “a child with
a disability is a symbol of a curse befalling the whole family. Such a child is a “shame” to the
whole family, hence their rejection by the family or the community. Children who are met by
those beliefs and attitudes can hardly develop to their full potential: “They get less attention,
less stimulation, less education, less medical care, less upbringing and sometimes less
nourishment than other children.” Franzen Bjorn (1990), pg 21-26.
Thomas (1957) sees societal perceptions and treatments of persons with disabilities within
cross- cultural settings as a kaleidoscope of varying hues that reflect tolerance, hatred, love,
fear, awe, reverence and revulsion. The most consistent feature in the treatment of persons
with disabilities in most societies is the fact that they are categorized as “deviants rather than
inmates by the society.” (Lippman 1972 pg. 89).
From a cultural point of view, therefore, there are many specific circumstances that have
influenced the living conditions of persons with disabilities, not to mention people’s attitudes
towards them. History shows that ignorance, neglect, superstition and fear are social factors
that have exacerbated isolation of persons with disabilities.
Throughout Africa, persons with disabilities are seen as hopeless and helpless (Desta 1995). The
African culture and beliefs have not made matters easier. Abosi and Ozoji (1985) found in their
study that Nigerians in particular and of course, Africans in general, attribute causes of
disabilities to witchcraft, juju, sex-linked factors, God /supernatural forces.
3
The desire to avoid whatever is associated with evil has affected people’s attitudes towards
people with disabilities simply because disability is associated with evil. Most of these negative
attitudes are mere misconceptions that stem from lack of proper understanding of disabilities
and how they affect functioning. “These misconceptions stem directly from the traditional
systems of thought, which reflect magical-religious philosophies that can be safely called
superstition” (Abosi, 2002).
In addition to other perceptions, social attitudes towards persons with disabilities are reflected
in the family, which teaches by example customs and institutionalized values. For example,
Gellman (1959) strongly believes that child-rearing practice tend to predetermine an adult’s
behavior towards persons with disabilities. This concept is consistent with cross-cultural
research conducted by Whiting and Charles (1953), which provides evidence that child- rearing
practices influence attitudes towards illness and disability. Their findings show that beliefs
about illness are influenced by significant early relationships between children and parents that
deal with the child’s conformity to adult standards behavior. Their investigations examined the
relationship between theories held in a culture to account for illness and the severity of childrearing practices devised to instruct children to conform to adult standards. Intense social
training was found to be related to oral, anal and genital functioning. It was hypothesized that
those areas of child development which were most severely disciplined would create high levels
of anxiety and would also be incorporated in theories of illness within the society. This
hypothesis was supported. Also supported was the hypothesis that societies with the most
severe socialization practices would create the highest degree of anxiety and guilt, and
therefore would tend to blame the patient as the cause of illness.
It would seem that specific values attached to body parts and their functions would be related
to the significance that is given to them within specific cultural settings based on the influences
of language, religion and ethnic identity.Wright (1960) observed that knowledge about the self
is built up through sensory experience, through the view points of others, and through
inference based on these sources. This makes it possible for the body to become invested with
significance beyond its concretely appraised function. As a result, body parts may assume such
connotations as good and bad, clean and unclean, adequate and inadequate. “The hands for
example, may not only be regarded as tools for grasping and manipulating but also
contaminated by shame and evil should the child have been traumatized when caught
masturbating or in fecal play.” (Wright, 1960 pg141)
The impact of sub-culture membership on the individual’s response to persons with disabilities
is illustrated by studies conducted by Richardson, Goodman, Hastorf and Dornbusch, Richard
4
and Hastorf (1963). Their research shows that adults and children of the same sub-culture
(Italian and Jewish) are consistent in their preferential ordering of photographs of children with
various physical disabilities.
Gellman (1959) suggests that cues learned in childhood serve as guides for distinguishing and
differentiating various types of disabilities in accordance with socially accepted norms. He
indicates, for example, that Eskimos perceive a limited number of disabilities, whereas
Americans generally use a large number of terms for persons with disabilities. “Society
furnishes in addition to roles and languages, a customary attitude towards the handicapped”
(Gellman 1959 pg. 4). The meaning of one’s own disabled physique to a person with a disability
and to others who interact with him or her will depend in general upon the values of the
cultural group to which they belong (Barker et al. 1953). The affective attitudes discussed by
Wright (ibid) include pity, fear, uneasiness, guilt, genuine, sympathy and respect.
These attributes are distinctly divided into positive and negative categories, and are likely to
critically affect the relationship between persons with disabilities and non-disabled people.
They form some of the attitudes which can stigmatize persons with disabilities, impose artificial
limitations upon them, deny them equal opportunities for development and living, and
inequitably demote them to second-class citizens to be pitied (in the sense where pity is seen as
devaluation tinged with contempt).
As Wright further observed: “Attitudes and behavior towards physical deviations are
tenaciously held and transmitted to the you…