November 2004
The articles published in the ALERT represent the opinions of the authors and are not an endorsement by the Association or necessarily representative of the views of the Association.
— From the President
— From the Editor
— Professional Development Calendar
— Affiliate Update
— On Race Ethnicity and Diversity
— Survival Strategies for Going Abroad
— Book Review
— Cherokee Honors Nursing Student with a Disability
— 5th International Conference a Success
From the President
2005 AHEAD Membership Renewal
MIDTERMS (already?) – didn’t
classes just start? Pre-registration for Spring classes. Now?
Final exams in less
than 6 weeks! Need to plan for next semester. We have two major
holidays between now and then ... a welcomed break.
Fall semester seems to be the busiest semester of the year and
it is always this time of year that we ask you to renew your
membership with AHEAD. If you've not received renewal paperwork
in the mail, you can find a membership application on line
at
www.ahead.org. Your renewal tells us that we are doing our jobs as
a resource by providing the information and support you need
to do your job. I have always believed that AHEAD is and/or should
be that unpaid professional in your office. If you know of a
colleague at another institution that would benefit from being
a member, tell him/her to take a look, a thorough look, at the
new AHEAD Web site. Recently, we have added over 200 new pages.
And, as always, if there is something that you would like to
see that we have not thought of, let
us know.
Getting To Know You
Because we believe that diversity is important
to AHEAD, it is our first value in the Mission Statement and
a primary
objective in the Strategic Plan. You'll find in this ALERT
a statement by the leadership of the Race Ethnicity and Diversity
(RED) SIG addressing this issue.
In Miami, when the issue of diversity was raised at the “Town
Meeting,” it was noted that AHEAD leadership does not know
the diverse makeup of the membership. For this reason, after
you renew your membership,
you will receive a follow-up email asking
you to voluntarily provide some basic demographic information.
I appreciate your assistance in bringing your attention to this
email.
By-Law Revision/Board Restructuring
As I am writing this piece prior to the end
of the voting period, I want to thank those who provided comments
about the revision/restructuring process.
Grammar, vocabulary and syntax suggestions have been addressed.
To those members who participated in the voting process, thank
you!
New Faces
Linda Walters (Seaton Hall, South Orange, NJ), the Director for
External Relations
and Legislative Affairs, submitted her resignation recently due to the
demands at her institution. In the year that Linda served on
the Board of Directors, she made significant progress in establishing communication
contacts accessing information about (national) legislative
issues. Linda’s service, although
brief, is truly appreciated. With the Board’s approval,
I have asked Nancy Hart (Lane Community College, Eugene, OR)
to join the Board to complete this term. One of the considerations
in filling this position was to make certain that community colleges
have a voice on the Board. This representation was lost when
Joanie Friend retired from the Board this year.
2005 AHEAD Conference Program Chair
David Sweeney (Texas A&M University, College Station, TX) has
stepped down as Program Chair,
as the demands of his job and community are currently more pressing.
David was the driving force to introduce and include research
as a vital component of the conference program for the 2005 Milwaukee Conference.
Dr. Rhonda Rapp (University of the Incarnate Word, San Antonio, TX)
has assumed the responsibilities of Program Chair.
Things to Know About E-text Activities
In the last ALERT I noted that e-text is an issue in which we
would become very actively involved. There are several activities
that are on-going pertaining to this involvement. First, AHEAD is supporting CAST
(www.cast.org)
in their grant applications for the development of a standard
for e-text production. Although the emphasis of the CAST project
is K-12, we believe that if there is not a consistency in formats,
specifically mathematics, musical and scientific notations,
in addition to regular text, there will be significant transitional
problems to post-secondary education for high school students requiring
alternative text. Ron Stewart (Oregon State University, Corvallis, OR) will be
representing AHEAD as an advisor to CAST for these activities.
Next, there are various groups that have
a “vested” interest
in e-text, but there is no information about who is doing what.
AHEAD is assuming the leadership in collecting this information.
Again, we are going to need the assistance of the membership
in this endeavor. Soon, you will be contacted to complete a survey
about any e-text activity (scanning, formats, etc.) that you
are doing. This information is critical to determine the extent
and variety of activity in the field. Which leads to:
A final objective: AHEAD has been involved in
the initial discussion with leadership throughout the country
on the establishment of
a national repository for e-text. Time is the factor that uniquely
underlies every aspect e-text issues. It
has
taken roughly
two
and
half years for the phenomenon to spread and we need to establish
some standards in about half that time. So again, I am asking
for your support, cooperation and assistance.
Strategic Plan
In the next issue of the ALERT, I will report the actions
of the Board with respect to the Strategic Plan. If there are any
parts of the Strategic Plan in which you would like to be involved,
I welcome and expect your participation. Again, if there is anything
that you need to communicate, please do not hesitate to contact
me at: jrkessle@email.unc.edu.
Last Thoughts
It has been a very difficult fall for thousands of people in
Florida, the South and the Appalachian Mountain regions as
a result of four devastating hurricanes. As the holidays come,
think about what you have and what you can share.
Jim
From the Editor
Hello Everyone,
I hope everyone has recovered from their fall rush of new students. While it's a very
exciting time, it's nice when things slow down and we have a chance to sit back and catch up
on other projects. This issue of the ALERT contains some thought-provoking information, from a piece
on diversity to a very interesting book review. There are some new professional development
opportunities identified in the calendar, but we're always looking for more to include. Please keep
sending me information on events to include in future issues. I hope you continue to enjoy the ALERT,
and if you have any suggestions or comments, please be sure to contact me at kejones@ucdavis.edu.
Sincerely,
Keltie Jones
Professional Development Calendar
Take advantage of these upcoming events, conferences, and other opportunities to increase and share your knowledge.
Calls for Presentations and Articles
The ALERT is now being published every other month. Please
keep those articles coming! Here is the schedule for submissions:
Submissions Due: |
Publication Date: |
December 10, 2004 |
January 7, 2005 |
February 4, 2005 |
March 4, 2005 |
April 8, 2005 |
May 6, 2005 |
June 10, 2005 |
July 8, 2005 |
AHEAD 2005 Call for Programs
Professionals in higher education, disability and related fields,
and product vendors, are invited to submit proposals for AHEAD's 28th annual
Conference to be held at the Midwest Airlines Center in Milwaukee, Wisconsin,
August 2 - 6, 2005. The theme for this year’s conference is “Meeting the Profession.”
The deadline for submitting your proposal online is November 22, 2004. If you have
questions about the Call for Proposals, please e-mail the Program Committee Chair at
2005Program@ahead.org. To review the Call for Proposals and to submit your proposal,
please visit http://www.ahead.org/training/conference/2005_conf/call_for_proposals.htm
Other Upcoming Conferences and Expositions
Check out these offerings from our colleagues in the fields of
disability and higher education:
Assistive Technology and Accessible Media
Conference, November
9-12, 2004 at CU - Boulder, University Memorial Center. In collaboration
with EASI, AHEAD & others, CU – Boulder will be sponsoring
the seventh annual Assistive Technology and Accessible Media
in Higher Education Conference, featuring Keynote Speaker Kathy
Martinez, Deputy Director - World Institute on Disabilities.
Session highlights include:
- Creating eBooks using Adobe PDF, Microsoft LIT and Daisy Format
- Aligning the Pieces: A UDL Approach to Online Learning for
All
- Achieving Web Accessibility with Section 508
- Digital Collections of Historical Documents and Accessibility
- Assistive Technology: The Key to Learner Centered Teaching
- Evaluating Text to Speech Software for College Students with
Learning Disabilities
For more information, go to www.colorado.edu/Atconference
Phone: 303-492-8671 (V/TTY)
E-mail: dsinfo@colorado.edu
Thompson Interactive, a division of Thompson Publishing Group, along with AHEAD, presents: The DISABILITY SUPPORT SERVICES (DSS) POLICY AUDIO CONFERENCE SERIES. Take the short course and fast-track your understanding of the thorniest disability and access issues in postsecondary education, including learning what the right policies and practices are and how to put them in place when you are confronted by them!
Go to http://www.thompsoninteractive.com/dss/ahead today for information on any and all of the five, information-rich, 90-minute interactive audio conferences that you and your colleagues can attend right from the comfort of your conference room or office. And if you register for 4 conferences, you'll get the 5th one FREE! And the best news of all is that AHEAD members are entitled to a 10% discount off the regular audio conference rates!
#1 Time and a Half, Double Time and Other Time-Consuming Requests. Tuesday, November 16,
http://www.thompsoninteractive.com/dss/ahead1
#2 How to Move From Legal Principles to Informed Practice: Making the Correct Decisions With
Disability-Related Issues, Tuesday, December 7, http://www.thompsoninteractive.com/dss/ahead2
#3 Campus Housing Requests Deconstructed, Tuesday, January 11, 2005,
http://www.thompsoninteractive.com/dss/ahead3
#4 Making the Grade When Responding to Course Substitution Requests, Tuesday, February 8, 2005,
http://www.thompsoninteractive.com/dss/ahead4
#5 Accommodating Students With Disabilities With Off-Campus Placements: Who and How? Tuesday,
April 5, 2005, http://www.thompsoninteractive.com/dss/ahead5
National Educational Association of Disabled Students (NEADS) Conference 2004: "Right On!" at the Delta Hotel and Suites, Ottawa, Ontario, Canada, on November 13th to 14th, 2004. Detailed information on themes can be found on the Conference Site located at www.neads.ca/conference2004. Any questions can be directed to Jason Mitschele, Conference 2004 Chair at conference2004@neads.ca
7th National Pathways Conference, Australia. The Gathering of a Nation – Red Centre Summit. Alice Springs Convention Centre, November 30th to December 3rd, 2004. The central Australian location of Alice Springs will provide the ambience and atmosphere to enhance and explore the conference theme, “Inspire, Include, Increase.” The conference will feature a variety of speakers, including Dr. Timothy Butler King, Director of Disability Services at the University of Dayton; Yami Lester OAM, a prominent Aboriginal spokesman and author; Micheline Yoke Yean Lee, a senior lawyer who specializes in human rights advocacy, Francis Vicary, President of Queenslanders with Disability Network; and Kevin Coombs, OAM, a foundation member of Paravics/Wheelchair Sports Victoria. For registration details, visit their website at http://student.admin.utas.edu.au/services/equity_resources/Pathways7_Conference/
3rd Annual Hawaii International Conference
on Education, January
4 - 7, 2005, Sheraton Waikiki Hotel, Honolulu Hawaii, USA
The conference will provide many opportunities for academicians
and professionals from education and related fields to interact
with members inside and outside their own particular disciplines.
For more information see: www.hiceducation.org/cfp_edu.htm
Affiliate Update
The AHEAD Affiliate program is alive and
very well. At the conference in Miami the groups proudly
displayed information in the Exhibit Hall and
generated interest from attendees. Some great things are being
done by the regional groups around the country. Missouri
is going great guns on Transition, see their
website, http://www.stlcc.cc.mo.us/fv/moahead/index.html,
for a look at their publication "Missouri Ahead Guidebook."
New England
held an informative meeting in Maine recently and Texas will
feature Jeanne Kincaid at the preconference
meeting held before their annual get together in November. The
affiliate groups around the country, numbered at 19, can get
some financial "aid" from
AHEAD in helping them achieve a program goal or other worthy
endeavor. Also, there is a new era of
collaboration between AHEAD and the Affiliates with conferences
being cosponsored by the two entities. All this adds up to the
betterment of both AHEAD and the affiliate
groups. If your state group is considering becoming a formal
affiliate, contact me at adarice@rice.edu or
go to the AHEAD website under "About
Us" where you can access the
Affiliate pages.
Jean Ashmore
Director of Constituent Relations - US
On Race and Ethnicity and Diversity
The Chairs of AHEAD's Race, Ethnicity and Diversity (RED) SIG
share their perspective on the imnportance of diversity in our work.
As we continue co-existing in today’s entourage of experiences, it is sometimes evident that there is a need to make each other aware of the next person if we are going to do this with some degree of harmony. However, by some people’s estimation, the issue of diversity has broadened. More importantly in reflecting awareness with regard to persons with disabilities, there is much diversity within this issue to a large degree. The reality of those persons with disabilities that continue co-existing everyday irregardless to their condition may be sometimes perceived as a picture of diversity. Sometimes they are unfortunately generalized during their matriculation rather than being viewed on a case by case basis. For example, it is absurd to say that all persons in a wheelchair are in the same condition. Likewise, it is equally distasteful to focus on all persons that may be legally blind being in the same generalized category.
The point is that there is a certain degree of diversity not only in those disabilities that are seen, but also in the hidden disabilities like ADHD, Dyslexia and even those conditions that may be a result from severe medical conditions like Sickle Cell Anemia in some instances. However, just being aware of the next person typically is a large part of what diversity is about. Noticeably, the momentum to some extinct has been succumbed to in many other areas. This carries over into this glimpse of diversity that is being echoed presently. For whatever reason, some of us to some degree are not exposed to some conditions in our daily walk or we sometimes do not have any desire to allow ourselves to purposely cross these conditions or experiences. Therefore, getting any degree of understanding of what the next person is going through becomes hidden. In this regard, diversity can be like a phenomenon.
It may be fitting to proceed with diversity as an opportunity to interact with a challenge giving us a clearer understanding of how it feels to be in the next person’s shoes. Equally, in dealing with these challenges, sometimes it is necessary to include a strategy that forms remedies that are broken down in different parts. Specifically, this may be handled one at a time. Diversity, likewise, may be pursued by acknowledging it as a whole with fairness of its uniqueness, but it may be fitting to concentrate on certain aspects of it towards reaching a more favorable degree of progress. With respect to this (diversity authenticity), who is to say what should be focused on and what part should not be focused on. It was evident after talking to some of the pioneers of the diversity SIG of AHEAD that this part would be the focus at this time. This could be where the humble spectrum of race and ethnicity would serve as the foundation of this glimpse of diversity.
For example, consider the reality of attempting to focus on issues that may involve being a person with a disability and also being a person of color. In some cases, historically it is perceived by some that not only have the persons in this scenario had to deal with certain issues that involved diversity insensitivity, i.e., respect of one’s race or ethnicity, but also the persons of color are believed to have been underrepresented or not have a participatory voice in some policy making efforts in the leadership circle. So, many persons believe that there is still a need for more targeted action in this area. Diversity then can be an opportunity to influence a sense of harmony.
Article submitted on behalf of the Diversity RED SIG by co-chairs:
Awoniyi, Bea
awoniyib@iastate.edu
Ballard, Vinson
vinson.ballard@jsums.edu
Hall, Duraese
halld@uhd.edu
Survival Strategies for Going Abroad: A Guide for People with Disabilities
Mobility International announces the publication of a new travel guide
for people with disabilities.
Navigating the Great Wall in China. Staying healthy in Japan. Taking your animal companion to Costa Rica. All reasonable issues to contend with as a world traveler. As a disabled world traveler, these and many other issues take on a more pressing relevance. A new how-to travel book especially for people with disabilities was released on Sept. 30, 2004.
The book, Survival Strategies for Going Abroad: A Guide for People with Disabilities, focuses on academic, volunteer, short-term work and other types of cross-cultural exchange for a cross-disability audience. It compiles new tips and stories from twenty individuals with disabilities who have studied in Australia, consulted in Japan, taught in Jamaica, volunteered in Russia, and more.
This new, easy-to-read book provides people with disabilities information, resources and guidance on pursuing international exchange opportunities. It addresses disability-related aspects of the international exchange process such as choosing a program, applying, preparing for the trip, adjusting to a new country and returning home.
Survival Strategies is a publication of Mobility International USA (MIUSA) and the National Clearinghouse on Disability and Exchange (NCDE), a project sponsored by the Bureau of Educational and Cultural Affairs of the U.S. Department of State and managed by MIUSA.
The book includes a preface by Susan Sygall, MIUSA’s co-founder and CEO/executive director. Sygall was a recipient of a MacArthur Fellowship in 2000 for her work as a disabilities rights activist and of a President’s Award, conferred by President Bill Clinton in 1995.
Survival Strategies is available in alternative formats. For more information or to place
a book order, contact Mobility International USA at PO Box 10767, Eugene, OR 97440,
(541) 343-1284 (v/tty), (541) 343-6812 (fax) or pr@miusa.org. For general information
about MIUSA or the National Clearinghouse on Disability and Exchange, visit www.miusa.org.
Contact: Cerise Roth-Vinson, Mobility International USA
(541) 343-1284 (Tel/TTY)
(541) 343-6812 (Fax)
pr@miusa.org
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@carroll88.com
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@uic.edu
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@aol.com
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@ohsu.edu
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).
Cherokee Honors Nursing Student with a Disability
Cherokee Uniforms announced the winners of the 2004 Cherokee Inspired Comfort Award, a national recognition program honoring healthcare professionals who have touched the lives of others through exceptional service, sacrifice and innovation. This year’s winners were selected from nearly 1,700 nominations in the following four categories: Registered Nurse, Licensed Practical Nurse/Licensed Vocational Nurse, Student Nurse, Non-Physician Healthcare Professional.
"These winners represent the immense dedication, compassion and skill that healthcare professionals demonstrate everyday," said Michael Singer, president and CEO of Cherokee Uniforms. “Their remarkable stories provide a glimpse into the extraordinary impact that nurses and other non-physician healthcare professionals have on the patients they serve. By sharing these incredibly touching stories with the public, we aim to increase respect for this often under-appreciated industry and inspire others to join this vital profession.”
This year’s Grand Prize award winner is Susan Fleming, RN (Washington State University Intercollegiate College of Nursing, Spokane, WA). Born with only one hand, Susan was selected as the top winner for her relentless determination to become and serve as a nurse as well as her advocacy for nurses with physical challenges. She is a shining example to other nurses and students with disability.
5th International Conference a Success
The 5th International Conference on Higher Education and Disability was held in Innsbruck, Austria on July 27-30, 2004. The theme for this year's conference was "Scanning the Horizon: Global Perspectives on Higher Education and Disability." Sixty-five workshops and programs were presented by individuals from all over the world, including some AHEAD members. Richard Harris presented a workshop titled "Franklin Roosevelt: The Meaning and Impact of His Disability," and AHEAD past presidents, plus Ralph Black, presented "The Legalization of Disability: The Advantages and Disadvantages of the Americans with Disabilities Act on building Successful Disability Service Programs."
Patricia Pierce from Vanderbilt University and conference organizer,
Gayle Gagliano, Director, Training, Resource and Assistive-technology
Center, University of New Orleans. (click on image to see a larger
version)
AHEAD past presidents pose with Ralph Black. (click on image to
see a larger version)
