[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

  • From: "Amber Wallenstein" <awallens@xxxxxxxxxxx>
  • To: <bksvol-discuss@xxxxxxxxxxxxx>
  • Date: Mon, 29 Nov 2004 10:34:43 -0500

This 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's new book 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 who have been faced with restrictions and limitations, subjected to a history of 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, the provision of qualified readers or interpreters, and other similar accommodations" to 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 Experience of Nursing Students with Disabilities (1999). In that article, Maheady used a 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 explicit context of 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, interpretations may differ from researcher to researcher, but it is crucial that investigator 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 parallel qualitative techniques. Regrettably, the data in the form of student narratives do not rigorously lead us to how students with disabilities can "change the course" of the nursing profession. Rather they seem to reflect Maheady's own story. Because her lens as a researcher is not made explicit, judging the credibility of her interpretations is impossible. While we admire Maheady's dedication 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 as her lens 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 the empty wheelchair (aimed toward the "Exit" sign and the closed double doors) 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 small percentage of persons with disabilities who use wheelchairs are unlikely to routinely 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 could be used as the foundation for a new educational model that includes those who 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 how such an approach could improve their feelings of equality and their interactions with 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 affect the way I would work as a nurse. I didn't realize how important hearing was to 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, where the disability is viewed in terms of social, cultural, political, economic, and 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 traits that 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. Unfortunately, the value of these traits is lost within the medical model construction that views 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 and weaknesses in judgment, but with the addition of specialized knowledge resulting from living with a disability (Rush University College of Nursing, Proceedings Manual, 2004). They are more apt to think about what is needed to accomplish a nursing task, how they will manage their bodies in space, and ways to keep themselves and their clients safe in the meantime. They are whole people with the characteristic of disability, not broken substitutes for more able nurses who must be monitored by the "real" professionals. They do not need to be "fixed," and they are not inherently less safe than students who do not experience disabilities. It is time that nursing scholars recognize such 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 care plan, developed and implemented by the healthcare team (e.g., what is the problem and 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 the questions that are asked as part of the framework for the INEP and in the suggestions that are made under the Faculty Responsibilities section. For example, the 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, Maheady often confuses the role of faculty-as-educator with faculty-as-clinician. 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. While faculty have always had the opportunity to refer students to campus-based counseling services when necessary, within the INEP the suggestions are much more 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, using clinically oriented rather than educationally oriented assessments. This casts students with 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 can act as educators and mentors, and who will ensure that nursing programs are accessible and accommodating to variety of diverse students, including those who experience a disability.

While Maheady puts forth a method for faculty to work with nursing students with disabilities, her INEP is based upon the K-12 Individualized Education Program (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 someone to watch over them in order to succeed, the past 30 years of the special education model in the K-12 system has shown that students with disabilities on IEPs continue to feel isolated and "different" and that students with 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 would propose resurrection of the child-oriented IEP system at the college level (perpetuating a stereotype that views people with disabilities as children), and advocate segregating students with disabilities by singling them out as "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. 105-17), disability 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 for all students rather than using a special plan such as the INEP for students with disabilities. Universal Design is "The design of products and environments 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 should be available to all students and would support the Universal Design concept. We know 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-on clinical experience with every nursing task during their education. As nursing 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, 2000).

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 willingness to disclose should be based on a foundation of trust. Maheady admits that "disclosure often comes with great consequences to the student" (p. 14) and she presents the story of a student, Rhoda, who experienced negative 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 such protection without 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 life and death nature of nursing practice the "greater good " must be considered (p. 154).

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 faculty and program 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 affect clinical performance. She does not suggest, for example, that students should inform their clinical supervisors or patients if they have not gotten enough sleep. Yet, this is a reality for many nursing students and lack of sleep has been directly shown to affect people's ability to think and act quickly and 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 is not a "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 of the nursing student as Maheady suggests, but rather need information that will 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 modeled as a matter of course instead of highlighting one's disability status. Moreover, there is no evidence suggesting that nurses with disabilities are less likely than nurses without disabilities to choose to work in a health care setting where they can practice safely.

Nurse Educators
Nursing education has sometimes fallen into the trap of taking a "cookbook," a 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 is "individualized," it uses a disease-oriented template to fit students with 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 that are often adopted by nurses and will propel nursing education backwards. It 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 Maheady has offered 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 foster the creation 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 Human Development
Associate Director for Research, Rehabilitation Research and Training Center 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, T. (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, D.C.
Marks, B.A. (2000). Jumping Through Hoops and Walking on Egg Shells or Discrimination, Hazing, and Abuse of Students with Disabilities? Journal of Nursing Education, 39(5), 205-210.
Oermann, M. (1995). Personal experience with people who have disabilities: The effects on nursing students' attitudes. Rehabilitation Nursing Research, 4(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).









-------------------------------------------------------
If you are having trouble accessing this listserv please contact Joe Hall at ndsu@xxxxxxxxxxxxxxxxxxxx or 803-524-6029(v)
-------------------------------------------------------
ACCESS IS A CIVIL RIGHT!! Please DO NOT forget to include a topic in the subject of every message you send to the NDSU listserv.


NDSU List Topics: CURR, ORG, GOV, DS, and ANN.

CURR: for current events. Education about current issues.
ORG: for discussions of organizing. Practical education.
GOV: Includes legislative, judicial, and executive information, organization, and calls to action on government issues. Political education.
DS: for discussions of disability as a political and cultural issue. Theoretical education.
ANN: for any general announcements and housekeeping, including discussions concerning accessibility.


If you would like to change the topics that you are currently subscribed to, go to: http://listserv.uic.edu/htbin/wa?LMGT1

Other related posts: