It's
Nursing Students with Disabilities: Change the Course, by Donna MaheadyAmber
Could you put the title of the book in your message? It is kind of annoying
to have to look at the subject again after reading the message, and in many
cases the whole subject isn't even shown because it is too long. The
subject for your message is possibly the longest I have ever seen, and I
didn't see it all until I read it from the reply. A person could look at it
from the properties of the message, but that is also a bit of an
inconvenience. :-)
Sarah Van Oosterwijck http://home.earthlink.net/~netentity/
----- Original Message ----- From: "Amber Wallenstein" <awallens@xxxxxxxxxxx>
To: <bksvol-discuss@xxxxxxxxxxxxx>
Sent: Monday, November 29, 2004 9:34 AM
Subject: [bksvol-discuss] Fw: Book review challenging the use of the medical
model in Maheady's new book on working with students with disabilities in
nursing
newThis might be a good book for someone to scan... Amber My attitude is never to be satisfied, never enough, never.\ Bela Karolyi, Olympic Coach E-Mail: Awallens@xxxxxxxxxxxxx MSN: Awallens@xxxxxxxxxxx AOL: Fleekytwo
*Book Review: Nursing Students with Disabilities: Change the Course, by Donna Maheady Stacey M. Carroll, PhD, APRN, BC; Bronwynne C. Evans, PhD, RN, CNS; Beth Marks, RN, Ph.D.; Karen Jane McCulloh RN, BS; and Martha R. Smith, MA challenge the use of the medical model of disability in Donna Maheady'shavebook on working with students with disabilities in nursing.
In the book Nursing Students with Disabilities: Change the Course, Maheady
raises the bar for her nursing colleagues and offers the idea that nurses
with disabilities have been around as long as there have been nurses. She
challenges her readers to address their stereotyped views that a nurse is
someone without a disability, and she offers a variety of suggestions for
demonstration of nursing competence by students with disabilities.
At the same time, Maheady perpetuates a medicalized perspective of
disability that views people with disabilities as abnormal and in need of
special plans in order to participate and succeed in the educational
environment offered by nursing programs. Rather than focusing on how to
create welcoming educational environments that are accessible to all
students, Maheady sends the message throughout her book that students with
disabilities in nursing programs need to be identified and watched more
carefully than other students. Maheady emphasizes that students with
disabilities need to receive more specialized services than other students
and need to be questioned about their decisions more than other students,
particularly in regard to safety, instead of highlighting their right to
receive reasonable accommodations as outlined by the Americans with
Disabilities Act of 1990 (ADA). As "a discrete and insular minority whobeen faced with restrictions and limitations, subjected to a history ofprovision
purposeful unequal treatment," individuals with disabilities have been
severely disadvantaged vocationally, economically, and educationally (ADA,
Section 2.a.7). As such, the ADA mandates accommodations, not special
treatment, as a matter of civil rights (Rhodes, Davis, & Odom, 1999).
Persons with disabilities are entitled to the "appropriate adjustment or
modifications of examinations, training materials or policies, theof qualified readers or interpreters, and other similar accommodations" toof
eliminate discrimination that is directed at individuals with disabilities
(ADA, Section 101.9.B).
Although no theoretical framework is presented for Maheady's book, many of
the narratives contained within are similar to the narratives presented in
her article Jumping Through Hoops, Walking on Egg Shells: The ExperienceNursing Students with Disabilities (1999). In that article, Maheady used acontext
qualitative multiple case study design and, as a researcher, "decided the
underlying formulated meaning of the significant statements" from the
experiences that she extracted from the data (p. 165). Such decisions are
appropriate in qualitative research and are set within the explicitmayof the researcher's orientation toward the phenomenon of interest. Those decisions are unique to each researcher and "set the stage" for data interpretation. Depending on the set of decisions made, interpretationsdiffer from researcher to researcher, but it is crucial that investigatorqualitative
biases and lens for interpretation are set forth clearly for the reader so
that credibility of the work can be gauged.
It is unclear if Maheady's book emerges from qualitative research but the claimed derivation of interpretation from the data does paralleltechniques. Regrettably, the data in the form of student narratives do notcourse"
rigorously lead us to how students with disabilities can "change theof the nursing profession. Rather they seem to reflect Maheady's ownstory.Maheady'sBecause her lens as a researcher is not made explicit, judging the credibility of her interpretations is impossible. While we admireherdedication to nursing students with disabilities and resonate to her personal story, her interpretation of the narratives is perplexing given that she presents no evidence as to how constructs such as the Individualized Nursing Education Program (INEP), disclosure, and safety emerged from the data. Further, she appears to use the medical model asemptylens on disability, although that too is not made explicit.
Even the graphic used on the book cover, an Everest Jenning hospital type,
patient transport wheelchair, appears to be a metaphor for the book's
orientation to nursing students with disabilities: "patients" who must be
"watched" carefully and provided with special "care plans" to successfully
complete nursing programs. This is baffling, given that Maheady is
attempting to showcase the unique abilities of nursing students with
disabilities. The Full Dome, 360 degree view mirror mounted above thewheelchair (aimed toward the "Exit" sign and the closed double doors)percentage
continues the metaphor, conjuring up illness, loneliness, and images of
being watched and trapped. While Dr. Maheady states that she is "fluent in
the disability and special education language" (p. 14), the smallof persons with disabilities who use wheelchairs are unlikely to routinelybe
use wheelchairs in that are traditionally used to transport patients.
Moreover, crucial contemporary constructs such as disability culture,
independent living, disability pride, or self-advocacy are conspicuously
absent from her book.
The narratives Maheady presents are a powerful way to understand the experiences of nursing students with disabilities. Such narratives couldused as the foundation for a new educational model that includes those whosuch
experience disabilities, and shed light on why they may feel isolated,
harassed, and reluctant to disclose. Maheady, however, provides a typical
model for working with such students that presents the disability as a
problem that needs to be fixed and increases the likelihood that they will
feel even more isolated and lonely. It is mystifying to the reader howan approach could improve their feelings of equality and theirinteractionsthewith their peers.
The protagonist of one such narrative is Marion (p. 35), who has a hearing
disability. She says, "When I applied to the baccalaureate program in
nursing, I didn't think my hearing impairment would significantly affectway I would work as a nurse. I didn't realize how important hearing was towhere
being a nurse until I arrived on campus...I had simply never been in a
situation where it was a problem." Using a social model of disability,the disability is viewed in terms of social, cultural, political,economic,thatand biological factors (Oliver, 1998), this narrative could have been interpreted very differently and the student may have also gained useful insight into her experience as a new nursing student with a hearing disability. If Maheady used a social model to "decide the underlying formulated meaning" (Maheady, 1999, p. 165) of this narrative, she could have reframed Marion's situation. Instead of centering the reader on the "problem" of not hearing, a social model would have highlighted traitsUnfortunately,Marion had developed because of her hard-of-hearing status. These traits, such as lip reading and paying close attention to the environment and to people speaking, while not intrinsic to many "hearing" nurses and nursing students, are quite useful in many practice areas for nurses.the value of these traits is lost within the medical model constructionthatweaknessesviews her disability as a problem, a "deficiency" or "abnormality."
Students with disabilities bring many of the same personal resources to nursing as do other students. They exhibit the same strengths andin judgment, but with the addition of specialized knowledge resulting fromaccomplish
living with a disability (Rush University College of Nursing, Proceedings
Manual, 2004). They are more apt to think about what is needed toa nursing task, how they will manage their bodies in space, and ways tokeepablethemselves and their clients safe in the meantime. They are whole people with the characteristic of disability, not broken substitutes for morenurses who must be monitored by the "real" professionals. They do not needsuch
to be "fixed," and they are not inherently less safe than students who do
not experience disabilities. It is time that nursing scholars recognizeplan,commonalties among students, acknowledge the value-added perspective that students with disabilities may bring to the profession, and advocate for enriching experiences so that other students can learn to work alongside, and value, their peers with disabilities (Oermann, 1995).
INEP Maheady's INEP incorporates aspects that are similar to a patient caredeveloped and implemented by the healthcare team (e.g., what is theproblemquestionsand how can it be remedied). This perpetuates the stereotype that the student with a disability is abnormal and needs the care of health professionals. The care plan model is particularly evident in thethat are asked as part of the framework for the INEP and in thesuggestionsthat are made under the Faculty Responsibilities section. For example, theMaheady
sub-section in the INEP titled "Impact [of the disability] on Academic
Program" repeatedly states that a student's disability may impact clinical
nursing courses (p. 133). The ADA (1990), however, mandates that
accommodations be considered in tandem with a disability, rendering this
impact negligible. The INEP also notes that, "Nursing faculty assessed the
student," but they apparently did so without considering the needed
accommodation.
Additionally, in the spirit of care planning, the INEP also requests
information about the cause of the student's disability, even though there
is no legal mandate to collect this information, it is irrelevant for
educational purposes, and it may encourage nurse educators to institute
discriminatory policies.
Because she places the student with a disability in a patient role,often confuses the role of faculty-as-educator with faculty-as-clinician.faculty
This blurs the lines for the student and the faculty member about
appropriate educational strategies and boundaries that faculty should use
with their students. For example, in virtually every student's INEP, there
is the suggestion that faculty refer the student for counseling or to an
"appropriate" support group/disability-specific organizations. Whilehave always had the opportunity to refer students to campus-basedcounselingservices when necessary, within the INEP the suggestions are much moreclinically
prescriptive and are generally based on referring the student to a support
group as a result of their disability label or "diagnosis." Maheady also
conflates the distinction between educator and clinician when she suggests
that nursing faculty assess the student with a disability, usingoriented rather than educationally oriented assessments. This castsstudentswith disabilities in the role of patient who needs a care plan to be"fixed"or "cured." Instead, students should be able to rely on faculty who canactthoseas educators and mentors, and who will ensure that nursing programs are accessible and accommodating to variety of diverse students, includingstudentswho experience a disability.
While Maheady puts forth a method for faculty to work with nursingwith disabilities, her INEP is based upon the K-12 IndividualizedEducationtoProgram (IEP), which was first mandated by the 1975 Education of the Handicapped Act (EHA, P.L. 94-142). While the IEP system assumes that students with disabilities need a special plan, special help, and someonedisabilitieswatch over them in order to succeed, the past 30 years of the special education model in the K-12 system has shown that students withon IEPs continue to feel isolated and "different" and that students withpropose
disabilities will take any opportunity to avoid being labeled and appear
normal. (Hehir 2002). Because it is geared towards minors, the K-12 IEP
system often removes the responsibility for succeeding from the individual
with the disability and places it in the hands of professionals who decide
the best course of action. It is mystifying as to why Maheady wouldchildren),resurrection of the child-oriented IEP system at the college level (perpetuating a stereotype that views people with disabilities asand advocate segregating students with disabilities by singling them outas105-17),"less than" other autonomous adults who present themselves to nursing education programs. While IEPs are now legally mandated under the Individuals with Disabilities Education Act Amendments (IDEA) (P.L.alldisability rights activists and scholars have made no efforts to advocate for a similar legal mandate to transfer this system to adults in postsecondary education.
As an alternative to the INEP, nursing schools might consider a model that
incorporates Universal Design features which could be more inclusive forstudents rather than using a special plan such as the INEP for studentswithdisabilities. Universal Design is "The design of products and environmentsbe
to be usable by all people, to the greatest extent possible, without the
need for adaptation or specialized design" (Center for Universal Design,
North Carolina State University). Many of the alternative ways Maheady
suggests for students with disabilities to demonstrate competency shouldavailable to all students and would support the Universal Design concept.Weclinicalknow that not all nurses do all activities, skills, and tasks in the same way, and that not all nursing students are able to obtain hands-onexperience with every nursing task during their education. As nursing2000).
faculty, when we cannot provide the opportunity for a student to gain a
particular psychomotor skill in the clinical setting, we commonly require
the student to merely know the theoretical principles associated with that
skill. This approach is also pragmatic and reasonable for students with
disabilities, whose intrinsic differences could enhance the quality of
educational programs and the nursing profession (Bjork, 1999; Marks,to
Disclosure
Maheady stresses the importance of communication among students with
disabilities, faculty, disability services, and clinical sites. While this
communication is crucial in order for students with disabilities to be
successful in their nursing programs, that communication and willingnessanddisclose should be based on a foundation of trust. Maheady admits that "disclosure often comes with great consequences to the student" (p. 14)she presents the story of a student, Rhoda, who experienced negativeprotection
repercussions when she disclosed her disability. Despite the potential
consequences, Maheady feels it is "imperative" that students should be
required to disclose that they experience a disability, not only to their
nursing faculty but also to clinical staff and patients. In fact, it is
illegal to require a student with a disability to disclose. Maheady's
recommendation that "Rhoda needs to improve her understanding of the
importance and responsibility of disclosure" could be perceived as
maternalistic and prescriptive. Maheady gives scant attention to the legal
ramifications of forced disclosure, and only then in the Afterword section
of her book. She states:
The nursing program must address issues related to the student's right to privacy, which may be an ethical tightrope, when considering suchandwithout compromising the patient's right to safe care. At times, the rope may tend to tip in the direction of the patient's rights. Given the lifedeath nature of nursing practice the "greater good " must be considered(p.and154).
Safety
Maheady seems to suggest that mistakes made by students with disabilities
are a result of his/her disability, reinforcing the notion that such
students need a special educational plan. She poses two questions: "What
accommodations could have improved her ability to provide safe patient
care?" and "Was patient safety compromised?" The implication of these
questions is that having a disability causes unsafe patient care. In fact,
no systematic, longitudinal research to date supports this contention. All
students make mistakes, which is an inherent part of the learning process.
Addressing students with disabilities outside of the broader context of
educating all nursing students distorts and exceeds the level of facultyclinicalprogram scrutiny for students who do not experience disabilities.
Once again, Maheady couples the issue of disclosure with patient safety,
which reiterates the erroneous implication that an implicit connection
exists between students with disabilities and unsafe patient care. She
neglects to consider that accommodations must be considered in tandem with
the disability (ADA, 1990) or that other factors may greatly affectperformance. She does not suggest, for example, that students shouldinformtheir clinical supervisors or patients if they have not gotten enoughsleep.Yet, this is a reality for many nursing students and lack of sleep hasbeendirectly shown to affect people's ability to think and act quickly andnot
clearly. The Institute of Medicine's (1999) report stated that when people
make mistakes, it is most often caused by faulty systems, processes, and
conditions, such as basic flaws in the way the health system is organized.
Moreover, the majority of medical errors do not result from individual
recklessness or the actions of a particular group - essentially, this isthea "bad apple" problem. Again, no scientific data has ever documented a relationship between disability status and medical errors and patient safety.
A more egalitarian model might be that all patients need to know about
factors that directly affect their care. This would be true for any nurses
or nursing students working with the patient, not just students with
disabilities. Patients do not need handouts explaining the disability ofnursing student as Maheady suggests, but rather need information that willas
enable the patient and nurse to work and communicate effectively. For
example, a nurse who experiences a hearing loss may choose to explain, "I
read lips so please be sure to face me when you talk to me and I might
sometimes ask you to repeat what you said to make sure I understood you
correctly." This is a more natural way to model respect and trust for the
patient and the nursing student. The person with the disability can decide
how much detail, if any, to disclose regarding the disability itself.
Disability and adaptation is a normal part of life, and it can be modeledarea matter of course instead of highlighting one's disability status. Moreover, there is no evidence suggesting that nurses with disabilitiesless likely than nurses without disabilities to choose to work in a health"cookbook,"
care setting where they can practice safely.
Nurse Educators Nursing education has sometimes fallen into the trap of taking aisa one-size-fits-all approach, as in the case of teaching about diverse cultures. Maheady's efforts verge on this same danger. Although the INEP"individualized," it uses a disease-oriented template to fit students withare
disabilities into prescribed boxes. It could easily be misconstrued as a
"cookbook," if nurse educators fail to consider the intentionally vague
language of the Americans with Disabilities Act (1990) that allows
accommodations to be tailored to meet the unique needs of persons with a
wide spectrum of disabilities (Helms & Weiler, 1993).
Maheady offers nurse educators one vision of how to include students with
disabilities in nursing programs. Her view, however, does not constitute a
new paradigm but rather reinforces traditional societal stereotypes thatoften adopted by nurses and will propel nursing education backwards. Ithas
remains for the larger nursing community to offer new ideas and visions
about nursing education that include, represent, and demonstrate the
education of a diverse student population, including students with
disabilities. It is necessary to advance such a vision and address the
systemic discrimination of students with disabilities, rather than relying
on a model that is inherently disrespectful of diverse adult learners.
Nursing considers itself to be an open, diverse, and inclusive profession,
and this stance needs to be modeled in nursing education. Donna Maheadytheoffered a welcome opportunity for dialogue by nurse educators to re-conceptualize disability and to identify the assets that people with disabilities bring to the nursing profession. This dialogue will fosterDevelopmentcreation of future paradigms that can, in fact, change the course for nursing education and the profession of nursing.
CONTACT INFORMATION:
Stacey M. Carroll, PhD, APRN, BCM 18 Wayland Circle Holden, MA 01520 stacey@xxxxxxxxxxxxx
Bronwynne C. Evans, PhD, RN, CNS Associate Professor Arizona State University College of Nursing P.O. Box 872602 Tempe, AZ 85287-2602
Beth Marks, RN, Ph.D. Research Assistant Professor, Department of Disability and HumanAssociate Director for Research, Rehabilitation Research and TrainingCenterT.on Aging with Developmental Disabilities University of Illinois at Chicago (M/C 626) 1640 West Roosevelt Road Chicago, Illinois 60608 312-413-4097 (phone) 312-996-6942 (fax) 312-413-0453 (TTY) bmarks1@xxxxxxx
Karen Jane McCulloh RN, BS Karen McCulloh & Associates Community Health Disability Education Private Practice 5432 Warren Street Morton Grove, Illinois 60053 847-583-8569 (phone) 847-965-6345 (fax) kjmcculloh@xxxxxxx
Martha R. Smith, MA Director, Office for Student Access Oregon Health & Science University 3181 S. W. Sam Jackson Park Rd. Mailcode: L349 Portland, OR 97239-3098 503-494-0082 (phone) 503-494-7519 (fax) smitmart@xxxxxxxx
Citations Americans with Disabilities Act of 1990. (1990). Public Law 101-336. Bjork, I. (1999). What constitutes a nursing practical skill? Western Journal of Nursing Research, 21(1), 51-70. Center for Universal Design, North Carolina State University [On-line]. Available at http://www.resna.org/taproject/policy/initiatives/UDStrategies.htm. Education of the Handicapped Act (EHA) (1975). Public Law 94-142. Hehir,D.C.(2002). Eliminating Ableism in Education. Harvard Educational Review, 72 (1), 1-33. Helms, L. & Weiler, K. (1993). Disability discrimination in nursing education: An evaluation of legislation and litigation. Journal of Professional Nursing, 9(6), 359-366. Individuals with Disabilities Education Act Amendments (1997). Public Law 105-17. Institute of Medicine. (1999). To Err Is Human: Building a Safer Health System. L.T. Kohn, J.M. Corrigan, & M.S. Donaldson (Eds.). Committee on Quality of Health Care in America, National Academy Press, Washington,ofMarks, B.A. (2000). Jumping Through Hoops and Walking on Egg Shells or Discrimination, Hazing, and Abuse of Students with Disabilities? JournalNursing Education, 39(5), 205-210.Research,
Oermann, M. (1995). Personal experience with people who have disabilities:
The effects on nursing students' attitudes. Rehabilitation Nursingat4(1), 28-32. Oliver M. (1998). Theories in health care and research: Theories of disability in health practice and research. BMJ, 317, 1446-9. Rush University College of Nursing, Proceedings Manual. (2004).
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