Abstract
The purpose of this paper is to examine the ethnic and religious perspectives
of people who are training for and working in the helping professions
regarding disability and people with disabilities. An inference is that
these perspectives effect the ways in which personnel in the helping
professions react to and deal with people with disabilities. The Modified
Issues in Disabilities Scale (MIDS) was administered to a sample of
persons working in the helping professions and/or training to enter
them. The scores on the MIDS can be viewed as a knowledge inventory
about persons with disabilities or as a scale measuring attitudes toward
persons with disabilities. A statistically significant association was
found between ethnic and religious perspectives and the scores on the
MIDS. The conclusion is that people preparing to enter and people presently
in the helping professions, but more importantly teachers of people
studying to enter the helping professions, must be aware of the influence
of ethnic and religious perspectives and how to counter any negative
effects which are to be found.
Disability is a complex phenomenon. It involves people (both disabled
and non-disabled) and their relationships as well as the social and physical
environment of the person with a disability. It involves assistive technology.
It involves social reaction to people with disabilities. It involves a
myriad of impairments. It involves public and private programs and laws.
And it involves a number of other things including people who work in
the "helping" professions.
Many persons in the helping professions try to separate disability and
people with disabilities, but such a separation is valid only if one looks
at a specific person. The concept of a person with a disability embodies
the phenomenon of disability and the two can not be separated. This study
is about the phenomenon of disability and the social group called people
with disabilities. They cannot be separated.
The purpose of this study is to judge whether ethnic and religious perspectives
can influence views of disability and people with disabilities. The findings
support an affirmative answer to that question. People in the sample who
identify as religious and as caucasian have more affirmative views of
disability and thus people with disabilities than the other people in
the sample.
It must be kept in mind that many people in the helping professions are
threatened if the sincerity of their actions relating to people with disabilities
is described as hollow and their actions are seen as not helpful. Part
of their identity is being a person who is seen as working hard to help
unfortunate persons, people with disabilities. They feel threatened if
such a basic part of their being is questioned. There are many ways to
explain this feeling of being threatened, but that is not the purpose
of this study. The purpose of this study is to investigate whether ethnic
and religious perspectives can influence views of disability and persons
with disabilities.
Literature Review
A review of the literature shows that no one likes people with disabilities.
Every major religion in the world (Ingstad, 2001; Braddock & Parish,
2001; Barnes, 1996; Ingstad & Whyte, 1995; Miles, 1995; Abberley,
1987), every culture (Parmenter, 2001; Barton & Armstrong, 2001; Miles,
2000; Heyer, 2000a, 2000b; Westbrook & Legge, 1993) with a few exceptions
(Barnes, 1996; Vash, 1995), every ethnic group (Van Ryn & Burke, 2000;
Westbrook, Legge, & Pennay, 1995; Mardiros, 1989; Ryan & Smith,
1989), every nationality (Crystal, Watanabe, & Chen, 1999; Paterson
& Jamieson, 1999; Ballard, 1996; Morrow, 1987) - everybody (it seems)
views disability and people with disabilities in the most pejorative way
possible. The literature has many, many illustrations of these attitudes.
More examples can be found in literature reviews and bibliographies in
Pfeiffer (2002), Wong-Hernandez & Wong (2002), Pine (1992), and Leong
(1986).
Disability is variously viewed as a tragedy, a disgrace, shameful, the
result of sin, and a punishment from God. People with disabilities are
repeatedly seen as objects of pity which produce guilt feelings in their
family members and associates. They are frequently viewed as a burden
to others, to their family, to themselves, and to society. They are continually
perceived to be useless and to behave in inappropriate ways. The answer
is segregation and discrimination. If the person with a disability is
a woman, it is even worse. (Westbrook, Legge, & Pennay, 1995)
In the English language people with disabilities are often called invalid
(not a valid person), handicapped (implying a beggar with a cap), or disabled
(not able). In Japanese the term for a person with a disability is shoguisha:
`sho' means harm, obstacle, illness; `gui' means loss, disaster; `sha'
means person. (Iwakuma, 1988) A person with a disability in Japanese is
one who is an obstacle and a disaster, who is ill, suffers harm, and experiences
a loss. In other languages it is the same.
However, this negative view does not completely agree with the observations
and experiences of the authors of this paper. One of them is a person
with disability, one is the parent of a person with a disability, and
the other four have extensive personal experience in the disability community
although not disabled themselves. Nor does this negative view entirely
agree with the observations and experiences of some colleagues with disabilities.
(Miles, 2000)
As a possible explanation for this inconsistency it was proposed that
ethnic and religious perspectives exert an influence on people's views
in both a positive and a negative way regarding people with disabilities.
To explore this proposition it was decided to examine the influence of
ethnic and religious perspectives toward persons with disability using
a test of knowledge and attitudes about people with disabilities known
as the MIDS - the Modified Issues in Disability Scale which is discussed
below.
Because the authors of this paper work in the helping professions and/or
teach classes for persons who are working in or who intend to work in
various helping professions it was decided to focus on these occupations.
The helping professions were defined as nursing, medicine, social work,
clinical psychology, public health, physical therapy, occupational therapy,
education, and rehabilitation although there are others. There is no doubting
the importance of this question. It is widely discussed (Miles, 2000;
Schilder, Kennedy, Goldstone, Ogden, Hogg, & O'Shaughnessy, 2001;
Kreps, 2000; Lee, Sobal, & Frongillo, 2000; Hassiotis, 1996; Rounds,
Weil, & Bishop, 1994; Groce & Zola, 1993; Westbrook, Legge, &
Pennay, 1993; Chan, 1992a, 1992b; Wang, 1992; Hoeman, 1989; Smart &
Smart, 1992) and there is considerable debate on how ethnic and religious
practices and perspectives can influence the success of service delivery
(Byrd, 1997; Ahmad & Atkin, 1996; Kato & Mann, 1996; Barnes, 1995;
Rogers-Dulan & Blacher, 1995; Priestley, 1995; Doyle, Moffatt, &
Corlett, 1994; Wrigley & LaGory, 1994; Goodall, 1992; Olivarez, Palmer,
& Guillemard, 1992; Longres & Torrecilha, 1992; Stuart, 1992;
Hanson, 1992; Braden, 1991; Dewing, 1991; Rapp, 1991; Logue, 1990; Hanson,
Lynch, & Wayman, 1990; Palmer, Olivarez, Willson, & Fordyce, 1989;
Biklen, 1988; Zernitzky-Shurka, 1988). There is also discussion of this
question within the field of disability studies (Gilson & DePoy, 2000;
Swain & French, 2000; Wong-Hernandez & Wong, 2002), within the
disability community (Crisp, 2000), and in other fields (Pfeiffer, 2002;
Wong-Hernandez & Wong, 2002; Pine, 1992; Leong 1986). However, general
discussion and anecdotal examples are the only basis given for the conclusions
presented in these various studies.
The reports in the literature fall into three groupings: descriptive studies
of various perspectives, case studies examining specific perspectives,
and calls for awareness of the influence of these perspectives. There
is no testing of the proposition relating ethnic and religious views of
disability with knowledge of and attitudes toward people with disabilities.
Consequently, the hypothesis tested in this study is that there is a statistically
significant relationship between ethnic and religious perspectives held
by persons in or going into the helping professions and knowledge about
and attitudes toward people with disabilities. An inference is that these
perspectives influence personnel in the helping professions in the manner
in which they react to and deal with people with disabilities.
Age and Contact
In some studies using the MIDS a relationship was found between attitudes
toward and knowledge about people with disabilities and the age of the
respondent and the amount of contact they have with people with disabilities.
Although there is contradictory evidence about the influence of age and
contact (Ingstad & Whyte, 1995; Heyer, 2000a, 2000b; Beckwith &
Matthews, 1995; Brigham & Malpass, 1985; Altman, 1981; Makas, 1989,
1990), there is some support for the contention that both variables have
an affirmative influence in the sense that they provide more knowledge
about persons with disabilities and more positive attitudes toward persons
with disabilities.
On the other hand, one of the authors who has used the MIDS often in other
studies contends that the variables of age and contact are both surrogates
for knowledge about and favorable attitudes toward people with disabilities.
In other words, only people who tend to have favorable attitudes toward
people with disabilities will have increasing contact with them and will
have continued to have contact with them as the individual ages. Of course
there are other possible explanations for the influence of the amount
of contact, but it seems plausible that a positive attitude toward people
with disabilities will be related to more contact as the person grows
older. In addition, many persons who are older will have had a larger
amount of contact with people with disabilities simply through the passage
of time. These two variables appear to be autocorrelated to a high degree.
Nevertheless, the two variables, contact and age, are included in this
analysis. Contact and age can shape attitudes, but as theoretical variables
they are quite different from ethnic and religious perspectives and they
have less theoretical interest than ethnic and religious perspectives.
NEGATIVE VIEWS
Extremely negative views of people with disabilities and the experience
of disability exist in various societies and they influence public policy
and individual actions. (Mitchell & Snyder, 2001; Turner, 2001; Gill,
2001; Basnett, 2001; Ravaud & Stiker, 2001; Barnes & Mercer, 2001;
French & Swain, 2001) In the US, for example, they underlie the calls
for legalized euthanasia to `put them out of their misery.' As Dr. Jack
Kevorkian believes (Kevorkian, 1991), the quality of life for a person
with a disability is so poor that assisting such a person to die is a
good thing. In a statement during court proceedings, Kevorkian said: `The
voluntary self-elimination of mortally diseased or crippled lives taken
collectively can only enhance preservation of public health and welfare.'
(Russell, 1999) And Peter Singer, a bioethicist and the holder of a named
chair at Princeton University, believes that the quality of life of many
disabled infants will be so poor that it is morally right to kill that
infant at birth. (Singer, 1991, 1995; Kuhse & Singer, 1985)
Most people who work in the helping professions do not go that far (Parmenter,
2001; Lollar, 2001), but holding negative views of disability and of the
quality of life of a person with a disability will result in decision
after decision leading to a self-fulfilling prophecy: to assume that things
are bad will result in things being bad. Furthermore, negative attitudes
lead to low expectations and failure. (Hassiotis, 1996; Beckwith &
Matthews, 1995; Jones, Atkin, & Ahmad, 2001; Ahmad, 2000; Kalanpur,
1999; National Council on Disability, 1999; Robinson & Rathbone, 1999;
Stone, 1999; Gold, 1980) Such prejudice harms people in many ways including
lowering self-esteem and inducing stress. (Swim & Stangor, 1998)
There is evidence that personnel in the helping professions do hold negative
views of people with disabilities and their quality of life. For example,
in one study 86% of persons with high level spinal cord injuries said
their own quality of life was and would be in the future average or better
than average when compared to the population in general. Of the rehabilitation
physicians, nurses, and technicians who treated them, however, only 17%
held this view. (Gerhart, Koziol-McLain, Lowenstein, & Whiteneck,
1994)
In another study persons in a spinal cord injury rehabilitation unit were
found by the researchers to be similar to the general population in their
level of depression. At the same time the unit staff (as a whole and as
individual occupations: physicians, nurses, occupational therapists, physical
therapists, social workers, psychologists, therapeutic recreation specialists,
and spinal cord injury education specialists) consistently misjudged the
patients' level of depression and said that it was much worse than the
general population norm. (Cushman & Dijkers, 1990)
A study done by the GINI Research Fund of St. Louis, Missouri, found that
medical personnel viewed the use of a mechanical ventilator as a burden
and a way to correct a deficiency in a person with a disability. The users
viewed them in a positive sense and as assistive technology which simply
helped them in their daily life. (Stigma or Tool? 2002) It is another
example of service providers using a deficit model of disability which
leads to a stigma at best and a denial of needed services (the ventilator)
at worst. The denial would be based on the incorrect assumption that the
users really did not want such a burden.
There is no doubt that the perspectives held by persons in the helping
professions can have a broad impact on the services received by people
with disabilities. For example a woman with a disability who had a positive
test result for pregnancy was asked by the agency person when she wanted
to schedule her abortion. When given the reply that she would not have
an abortion, the agency person said: `A woman with disabilities can not
care for a healthy child or a child who has disabilities....' (Anonymous,
1999) Misperceptions about people with disabilities are to be found in
the helping profession.
The Study
In order to study the views of disability and people with disabilities
held by persons in the helping professions and to see how the views of
ethnic and religious groups effect them, a convenience sample was obtained
consisting primarily of college and university students (n = 391). Since
there is no national data base of people in or going into the helping
professions from which to draw a sample and because of differing definitions
of the `helping professions' as well as the great variety of definitions
of disability, it was necessary to use a convenience sample accepting
all the problems it presents. (Barker & Strong, 1998) The respondents
were all majoring in a helping profession discipline and/or working in
a helping profession.
Half of the people in the sample (50%) were university students in Hawaii;
30% were students in California; 16% were students in American Samoa;
4% were non-students living in Honolulu and working in a helping profession.
Many of the students (42%) also worked and of them (44%) worked in a helping
profession.
The student body at the university in Hawaii is a good population to sample
because it is very heterogeneous in terms of ethnicity: about a third
of the University are of caucasian ancestry; another third are of Japanese
ancestry; and the rest are a mixture of Pacific Islanders, Asians, and
others. The respondents in California came from a student body with heavy
concentrations of Hispanic and Asian people and 91% of the American Samoan
respondents gave their ethnic identity as Samoan. In addition the three
groups have a mixture of religious affiliations. They are an excellent
population from which to draw a blend of persons from different ethnic
and religious groupings for the study.
As a test of knowledge and attitudes about people with disabilities the
MIDS - Modified Issues in Disability Scale - was used. The MIDS, developed
by Dr. Elaine Makas, is the only scale of its type which was developed
in conjunction with people with all types of disabilities and with their
close associates. It is unique in that it can be described as a scale
measuring attitudes toward people with disabilities and, at the same time,
measuring knowledge about people with disabilities. That is, if one knows
very little about people with disabilities, then that person will respond
according to the stereotypes which their ethnic and religious groups have
about people with disabilities, usually negative ones. The more knowledge,
the further they will be from the negative views. (Makas, 1985, 1987)
In addition, it is argued (Antonak & Livneh, 2000) that when people
know that their attitudes are being probed, they will answer differently
than when they are answering what they perceive as factual questions.
For these reasons and others (including superior performance), the instrument
chosen for the study was the MIDS. Its reliability and validity are well
established. (Makas, 1991a, 1991b, 1993)
The MIDS is a set of 37 statements phrased in a factual manner such as:
`It is logical for a woman who uses a wheelchair to consider having a
baby.' The respondents are asked to indicate if they Strongly Disagree,
Disagree, Somewhat Disagree, Don't Know/No Opinion, Somewhat Agree, Agree,
Strongly Agree with the statement and the answers are coded from one (Strongly
Disagree) to seven (Strongly Agree). A number of the statements are reverse
coded. After allowing for those answers to be transposed, the higher the
score the more the person knows about people with disabilities and the
more positive is that person's attitude. The lowest score possible is
37 and the highest is 259. In this study the MIDS score ranged from a
low of 107 to a high of 247. The mean was 173 (sd = 24.3), the median
was 172, and the mode was 173. The scores had a normal distribution.
The Sample
In the sample used in the present study (n = 391) 75% were women, not
surprising since most helping professions have a large proportion of women.
The mean age of the sample was 26 (sd = 8.6), the median age was 23, and
the ages ranged from 17 to 61. Persons who were employed comprised 46%
of the sample and they were either studying to enter a helping profession
(although not working in one) or presently working in one of them.
The respondents were asked how much contact they had with persons with
disabilities. The scale ranged from no contact (3%), to very little contact
(21%), to some contact (40%), to quite a bit of contact (20%), and finally
to a great deal of contact (16%). Another question concerned whether or
not they identified as a person with a disability and only 6% of the sample
reported being a person with a disability.
The two variables of age and amount of contact were included in this study
because of the findings of other studies. They individually had a statistically
significant, but low, relationship to the score on the MIDS. Age and the
MIDS score had a Pearson's r = 0.32 (p = 0.01) and contact and the MIDS
score had a Pearson's r = 0.14 (p = 0.001). However, age and contact themselves
had a low association with each other, Pearson's r = 0.31 (p = 0.001),
and therefore both were used in this study and included in the explanatory
model presented below.
Two variables, religious perspective and ethnic perspective, are the focus
of this study. In terms of religion, 71% of the sample identified with
some variety of religion and 29% identified as not religious. In terms
of ethnic groups, 37% identified as caucasian and the rest as some other
group. After extensive analysis, the two variables were collapsed as follows.
The ethnic perspective variable was reduced to caucasian and other and
for the explanatory model it became a dummy variable with caucasian coded
as one and the rest as zero. The caucasians (n = 137) had a mean score
on the MIDS of 182 (sd = 22.4) and the other (n = 233) had a mean score
of 168 (sd = 24.3). The difference between the two groups was statistically
significant (p < 0.0005) using a two tailed t-test.
The religious perspective variable was reduced to none and religious and
for the explanatory model it became a dummy variable with religious coded
as one and none as zero. The none group (n = 113) had a mean score on
the MIDS of 177 (sd = 23.8) and the religious group (n = 278) had a mean
score of 171 (sd = 24.4). The difference between the two groups was statistically
significant (p = 0.04) using a two tailed t-test. In the explanatory model
tested, however, the direction of the influence of the religious perspective
variable changed.
The two recoded variables - ethnic perspective and religious perspective
- did not have a statistically significant relationship with each other
(using a chi square test with an alpha level of 0.05). Neither the recoded
ethnic perspective variable nor the recoded religious perspective variable
had a statistically significant relationship with the contact variable
(using a chi square test with an alpha level of 0.05). And neither one
of them had a statistically significant relationship with the age variable
(using a two tailed t-test with an alpha level of 0.05).
In other words, after the recoding it was found that the ethnic perspective
variable and the religious perspective variable were randomly related
to each other. The recoded ethnic perspective variable, the recoded religious
perspective variable, and the contact variable were randomly related,
that is, statistically independent of each other. The recoded ethnic perspective,
recoded religious perspective, and the age variables were also randomly
related, that is, statistically independent of each other. The age and
contact variables had a statistically significant, but low association.
None of the other possible independent variables (working, disabled, and
gender) was statistically related to the score on the MIDS when controls
for age, contact, religion, and ethnicity were used and therefore dropped
out of the explanatory model.
An Explanatory Model
In order to measure the strength of the association which the two variables
under scrutiny (religious perspective and ethnic perspective) and the
contact and age variables have with the MIDS, an ordinary least squares
regression model was tested with the line of best fit going through the
origin in order to adjust for the disparity in measurement scales. The
results are:
MIDS = 0.45AGE + 0.39CONTACT + 0.13RELIGION + 0.08ETHNIC
R Square = 0.95 Standard Error = +/- 41 n = 370
F = 1595.3 p < 0.00005
This model explains 95% of the variation in the MIDS scores. The variables
age and contact were the most powerful ones and in a positive manner.
The religious perspective and the ethnic perspective variables explained
about 21% of the variation in the MIDS scores. Although age and contact
with people with disabilities had high, positive effects upon the MIDS
score (as was expected), the religious perspective and ethnic perspective
also had a notable effect. The whole model is highly statistically significant.
It is interesting to note that by itself the recoded religious perspective
variable had a negative relationship with the MIDS score. As stated above,
those respondents who were not religious had a mean score of 177 (sd =
23.8) while the others had a mean score of 171 (sd = 24.4). This result
could be interpreted as saying that being non-religious exerted a positive
impact on the MIDS score. However, when the influence of the other three
variables (age, contact, and ethnic perspective) was controlled for, the
impact was reversed. Being religious (in the presence of the other three
variables) has a positive impact on the MIDS score.
Conclusions
Earlier this question was posed: Do ethnic and religious perspectives
on disability have an impact on persons in and going into the helping
professions? Based upon the results of this study, being religious has
a positive effect on how a member of the helping professions or a person
studying to be a member of the helping professions view people with disabilities.
Identifying as caucasian also has a positive effect on how they view people
with disabilities.
The further research question which comes from these results is: Do the
negative views of some ethnic and many religious groups result in poor
treatment of persons with disabilities by people in the helping professions?
Probably yes, but to test this contention one must go beyond the present
data set which does not have a measure of quality of treatment.
What is the conclusion to be drawn from these results? The perspectives
of religious and ethnic groups do shape the views of people toward disability
and people with disabilities to some extent. In other words, people in
the helping professions, studying to enter the helping professions, and
teaching persons about the helping professions must be aware of ethnic
and religious perspectives of disability and people with disabilities.
While it is not usually productive to strongly disagree with ethnic and
religious perspectives, their implications must be discussed by people
in the helping professions.
It is not unusual for one group of people (in this case some members of
the helping professions) to be somewhat intolerant of another group (people
with disabilities). Such a situation is consistent with the three dominant
paradigms of disability: the social model, the social constructionist
model, and the oppressed minority/political model. (Pfeiffer, 2001) In
the social model this intolerance is seen as part of the social fabric
which keeps people with disabilities disadvantaged. In the social constructionist
model this intolerance is seen as the stigmatizing reaction to the constructed
identity of people with disabilities. In the oppressed minority/political
model this intolerance is seen as evidence of the oppression of people
with disabilities. The intolerance tends to tie the three paradigms together.
However, one would hope that members of the helping professions would
not be intolerant of the group they wish to help. It is up to people in
the helping professions, studying to enter the helping professions, and
their instructors to be aware of this possibility and to neutralize it.
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Acknowledgements
Financial support for this work was provided by the following projects
at the University of Hawai`i at Manoa: the Project for Minority Assistance
and Pacific Partnerships (MAPP) funded by the US Department of Education;
the Maternal and Child Health Bureau's Leadership Education in Neurodevelopmental
Disabilities program funded by the HRSA, US Department of Health and Human
Services, MCH B, MCJ #159342; and the Pacific Partnerships in Disability
and Diversity Studies, US Department of Education, grant number H325E980037
98. In addition support was provided by the Center on Disability Studies
of the University of Hawaii at Manoa; the University of California at
Chico; and the Frank Sawyer School of Management of Suffolk University.
The views and opinions expressed are solely those of the authors.
We thank Dr. Elaine Makas for her permission to use the MIDS in our work.
Her address, for further information about the MIDS, is 10 Sheffield Ave,
Lewiston, ME 04240. She is a member of the faculty of the Lewiston Auburn
College of the University of Southern Maine.
This study was determined to be exempt from review by the institutional
review board of the University of Hawaii at Manoa.
David Pfeiffer is the editor of the Disability Studies Quarterly and
resident scholar at the Center on Disability Studies.
Anna Ah Sam, M.P.H., is a faculty specialist at the Office of Student
Equity, Excellence and Diversity at UH Manoa. Her areas of interest include
recruitment and retention of under represented students, program evaluation,
and campus diversity.
Nancy B. Robinson, Ph.D., recently joined the faculty in the Department
of Special Education and Communicative Disorders at San Francisco State
University where she teaches in the areas of augmentative and alternative
communication, language development, and collaborative practice. Her primary
research interests are in the areas of cultural diversity and disability
studies approaches, as applied in professional practice. Prior to moving
to California, she worked with the Center on Disability Studies at the
University of Hawaii and participated in outreach programs throughout
the US Pacific Island nations.
Katherine Ratliffe, Ph.D., is a pediatric physical therapist with a doctorate
in educational psychology. She has been a faculty member at the Center
on Disability Studies at the University of Hawaii since 1993. Her teaching
and research interests lie in the areas of children and adults with developmental
disabilities, interprofessional collaboration, the role of families, and
cross-cultural studies, especially cultures of the Pacific Islands. She
has authored a textbook, Clinical Pediatric Physical Therapy: A Guide
for the Physical Therapy Team (Mosby, 1998), and does frequent training
and consultation with indigenous peoples across Micronesia around their
children with disabilities.
Norma Jean Stodden, Ph.D., is the Interdisciplinary Training Director
at the Center on Disability Studies at the University of Hawaii at Manoa.
Dr. Stodden is Project Director for the Pacific Partnerships in Disability
and Diversity Studies, a minority leadership training program for an interdisciplinary
group of doctoral students.
Martha M. Guinan, MPH is the Co-Director of the Pacific Voices Project
for the University of Hawaii Center on Disability Studies. The Pacific
Voices is developing a curriculum for uses of technology in the Pacific
classroom. She is also Co-Chair of the Pacific Rim Conference on Disabilities,
the premier conference on disability issues in the Pacific. She is interested
in the issues that families of people with disabilities face and how they
deal with them, inclusion in the classroom and community, and the uses
of assistive and adaptive technology in accomplishing inclusion.
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