Empowering Students with Severe Disabilities: A Case Study
Jay T. Hatch, David L. Ghere, and Katrina Jirik
University of Minnesota
This chapter provides a case study of the empowerment of a student with multiple and severe disabilities. We outline accommodations provided in three college courses, describe classroom events that contributed to the student’s success, and provide the student’s own insights into her situation. We conclude that instructors must be thoughtful about what constitutes the essential elements of their courses and creative about how students can acquire and demonstrate knowledge in order to remove the instructional barriers that prevent students with disabilities from being successful in college coursework. Removing these barriers empowers students with disabilities to achieve their academic potential by building self-confidence and developing a realization that the responsibility for success is shared by the students, the instructors, and the institution.
Empowering Students with Severe Disabilities: A Case Study
Data suggest seriously disproportionate barriers both to access and to success in higher education for persons with disabilities (U.S. Census Bureau, 2001). That the disproportionate success results in large part from inadequately designed curricula and skeptical or hostile attitudes of faculty is no longer a matter of conjecture (Foster, Long, & Snell, 1999; Kalivoda & Higbee, 1998; Seymour & Hunter, 1998; Hill, 1996; West, Kregel, Getzel, & Zhu, 1993). In this chapter we present a case study of Kate, a student who, because of her severe and multiple disabilities, easily could have been pushed to the edge of the classroom and the entire college experience. We show instead how Kate became fully integrated into three courses (one in world history taught by David Ghere and two in biological science taught by Jay Hatch), won the respect of her teachers and peers, and gained a strong sense of self-confidence and empowerment that resulted in her becoming an outstanding student. We also describe how she helped us to recognize the elements of Universal Instructional Design (UID) that are crucial to the academic advancement of students with severe disabilities (Higbee, 2001; Bowe, 2000; Silver, Bourke, & Strehorn, 1998). Some of these elements already existed in our courses, while others had to be invented to accommodate Kate and are now available to every student.
We begin by describing Kate’s array of disabilities, followed by separate case accounts of the world history course and the biological science courses. In these case accounts, we describe what accommodations each of us made, how these accommodations and other course practices facilitated Kate’s integration into each course, and how Kate responded to the integration. We conclude with a brief analysis of what we believe to be crucial elements of curricular modification that will empower students with severe disabilities to successfully achieve their academic potential.
This case study is unusual in that its subject, Kate, is also one of its authors. We strongly believe that the advancements made here and the knowledge gained resulted from intellectual contributions involving all three of us. Kate’s participation as an author also brought a level of accuracy and authenticity to the writing that would not have existed otherwise. Finally, Kate thought it important to be identified both as subject and as author; hence, we do not employ a subject pseudonym.
Kate was a challenge, a delightful challenge. In our combined 35 years of teaching, we have never encountered a more daunting prospect or a more successful conclusion. Both of us have had personal experiences with friends or acquaintances who have disabilities, and these experiences preconditioned us to view the potential of students with disabilities very positively. We each have had a number of successful experiences accommodating such students in our classes. Yet, confronted with the array of Kate’s disabilities, each of us wondered if we could have any positive impact on her learning.
Kate has severe and multiple disabilities that affected motor control, sensory perception, communication, and learning. She is unable to walk or have complete control over her head and arm movements. Her motor disabilities cause her speech to be virtually unrecognizable. She speaks by typing words into an augmentative communication device with a synthetic voice output. Weak muscles make it necessary for an assistant to support her arm while she swings it slowly but deliberately to strike the keys. Typing is a very slow and arduous task; thus, real-time conversation is a very slow and sometimes frustrating process. Kate also is legally blind. She has limited short-range vision but a form of dyslexia affects even that capability by sometimes rearranging and distorting those things that she can see. The combination of untrustworthy vision and weak muscles means that Kate cannot control the movement of her wheelchair physically or electronically and has to rely on an assistant to move anywhere. Poor muscle control also results in uncontrollable drooling and a variety of guttural noises made during attempts to swallow excessive saliva. Often these noises exacerbate communication problems and initiate a level of irritability in classmates, some of whom interpret the noises as discourteous, juvenile giggling.
Finally, Kate has a "central processing difficulty" that interferes with word finding and retrieval, which makes it appear that she has memory problems and causes her to go about problem solving in an unusual way. Kate explains it this way.
I'm beginning to realize that I think differently than a lot of people. I think in associative webs. I do not memorize well. I have to have lots of information and a thorough understanding of the concept or theory in order to remember it. I need to know much more than other students just so I can remember the required information. The typical teaching method of simplifying things is a disaster for me. When I don't understand something, I need more information not less.
Despite our doubts concerning our abilities to adequately address Kate's needs, we both were determined to make our courses positive educational experiences for Kate. We each met with Kate to discuss what specific accommodations would be effective and set out to determine how we could implement those accommodations in our courses. We hoped Kate would learn from her experiences in our courses; we had little notion of how profound the experience would be for all three of us.
The World History Course
Kate enrolled in a ten-week freshman world history class covering the period from 1750 to the present. One simple accommodation was to have exams administered by the staff at the University’s Office of Disability Services so that Kate could use their magnification equipment and have questions read out loud if necessary. I also provided Kate with copies of class notes and map transparencies so that she could review them prior to class and thus, be better prepared to understand class presentations and be more involved in class discussions. The world history class included four classroom simulations, active learning exercises that require students to assess the options available to historical figures, reach some decisions, and then explain or critique those decisions. I provided Kate with simulation materials in advance so that she could prepare and save voice messages on her communication device for possible use during the simulation. These materials are now posted on a course website for the benefit of all students in the course.
Kate’s presence prompted me to make greater use of techniques and methods that I already attempted to practice in the classroom. I routinely contrast opposing views or evidence by writing them on opposite ends of the blackboard, and I vary my tone of voice and speech patterns to emphasize different points. Also, I try to verbally provide detailed explanations of the important aspects of material being presented visually. The physical movement, the voice changes, and the detailed explanations helped all students to follow the logic of class lecture and discussion, but it was particularly beneficial for Kate due to her limited vision. Also, my questions in class are followed by long pauses before I select the person to answer the question. This allows all students to consider the question, facilitates involving more students in the discussion, and provides broader indications of student comprehension of the material. In this instance, it also provided Kate with the time necessary for her to answer questions.
Long before ever learning of the concept of UID, my teaching goals included promoting the widest and deepest acquisition of course material and providing students with the greatest opportunity to demonstrate their knowledge and understanding. Detailed review sheets were provided and essay topics were announced a week before each exam. This had the dual benefit of enabling students to focus their thoughts and energies while increasing the quality of work that could be expected by the instructor. In addition, when demonstrating their mastery of course content through written essays, students were given generous amounts of time, thus promoting and rewarding thoughtful analysis rather than writing speed. These practices enhance student learning while enabling instructors to evaluate each student’s effort, knowledge, and understanding with more precision. While they were implemented to benefit all the students, these practices contributed to Kate’s success in the course and limited the need for special accommodations.
A significant breakthrough was achieved during the first classroom simulation that occurred at the end of the second week of classes. In this simulation, Congress of Vienna, students were divided into groups of three and provided with outline maps of central Europe depicting the boundaries of France, Prussia, Austria, and Russia as well as smaller countries and principalities in central Europe. Each group had to decide how to reward the victorious countries with territory, reestablish the balance of power between the major powers, and reinstall autocratic governments following the Napoleonic Wars. The two students grouped with Kate were friendly, but seemed uncomfortable and uncertain about how to include Kate in the simulation. As they were discussing a possible territorial decision, Kate selected a prerecorded message and the mechanical voice from her communication device said, “Austria would not like that.” Her two startled partners waited for Kate to type a further comment and were rewarded with a clear explanation of the dilemma posed by the simulation. Kate quickly emerged as the leader of the discussion group for the rest of the class period.
The simulations allowed Kate to demonstrate her capabilities in ways that would never have happened in a typical lecture-style classroom. Kate’s high scores on exams and papers would have been largely unknown to her classmates, and her severe physical disabilities would have greatly limited her involvement in most classes. Yet, in the context of the simulation, the “tinny’ voice of Kate’s communication device caught students’ attention throughout the classroom. They were aware of her active involvement in her group and her contributions were evident in the class discussion that followed the simulation. Kate was paired with a different set of students in each of the three subsequent simulations. Having observed Kate in that first simulation, these new partners immediately involved her in the discussions and waited eagerly for her contributions. In each case, Kate participated fully in the activities and her active involvement could be heard by others in the classroom. By the end of the quarter, everyone knew that the student with the most "medical" disabilities was also the most intellectually capable student in the class.
Kate is a unique student, possessing a truly gifted intellect and a determination to succeed. However, her success in the world history course was also dependent upon a body of class procedures, course assignments, and teaching methods that enabled her to demonstrate her ability. Throughout most of her previous educational experience, she had not had the opportunity to display her capabilities. Many teachers, staff, and administrators had assumed an intellectual deficit based upon Kate’s physical disabilities and her inability to participate in typical class interaction. When Kate had done well on standard tests and papers, many had assumed that others must have written the papers and answered the test questions for Kate. In this world history class, Kate’s acquisition of knowledge was promoted, her active involvement was fostered, and her mastery of the content was accurately evaluated. Kate achieved success because the instructional design barriers were removed that had previously prevented her from demonstrating her ability. All students regardless of their intellectual or physical abilities should be allowed to demonstrate that ability without having to overcome needless barriers created by instructional design.
The Biological Science Courses
Kate enrolled in two biological science courses one year apart. The first was a small-enrollment (i.e., 35 students) environmental science course and the second was a larger enrollment (i.e., 100 students) general principles course that included a laboratory component. For the environmental science course I made several of the same accommodations that Dave did in the world history course. All students received a detailed study guide at the beginning of the course. This guide included all of the exercises and study questions that were worked on and discussed in class, as well as examples of tests from previous quarters. I made the additional lecture information (tables, graphs and other illustrations) available to Kate at least one week in advance. This way Kate could formulate responses and her own questions ahead of time, program them into her computer, and participate in class much as other students did. I had already made in-class tests only 20% of the grade, with a variety of formal and informal writing assignments and a group project making up the remaining 80%. As an accommodation to Kate, I gave all students the option of taking in-class tests similar to those in the study guide (i.e., a mix of short-essay and objective questions) or completing overnight take-home essay exams. Both exam types tested exactly the same learning objectives. These were the accommodations that Kate said ahead of time were the most important. She needed to know in detail from the start what was expected of her so that she could set up her support system and lay out a work schedule that would allow her to stay up to date in the course. She needed to know that there was at least the possibility that she could meet each course requirement, one of which was class participation. In retrospect, this seems only fair and reasonable for any student.
There was one course requirement that Kate thought she might have trouble meeting: the group project. Because of her real-time communication difficulties, Kate was not accustomed to working in a group, especially during class time. To help facilitate the initial group work, I assigned Kate to a group with an older, experienced student who had done a great deal of group work inside and outside of academia. I also suggested to the group members that, as they discussed project issues, they might periodically pose “yes” or “no” questions to allow Kate to participate in a timely way. As the group work proceeded, fellow students realized that Kate possessed considerable intellect and that she brought an unusually focused clarity to what she wrote. Both my concerns and Kate's about her ability to successfully complete the project work faded quickly. Still, there was the vexing problem of the final class presentation of the project's outcome. No one, including me, expected Kate to present before the class. It was not a requirement for anyone. The requirement was that each member of the group had to contribute to the project in a meaningful way that was acceptable to everyone in the group. Nevertheless, when the day for presentations arrived, Kate was at the front of the room with the rest of her group. They presented a Jeopardy quiz show on the Siberian tiger. While other members of the group read the answers, Kate used the variety of voices available on her voice synthesizer, like Bubbly Betty and Freaky Frederick, to supply the question, “What is the Siberian tiger?” The entire presentation was superb and it received the only standing ovation in memory.
Not quite one year later, Kate asked me if I would help her with a course requirement issue. The University of Minnesota requires all students to complete a foundation course in biological science that has a significant laboratory component. Kate was eager to take the general principles course, but she thought the laboratory component might be inappropriate for her. After all, she reasoned, the purpose of a lab is to get students to manipulate things with their hands and make direct observations, and “I cannot do that.” My immediate reaction was, "Not so, you've already proven that you can do science as well as anyone, better than most." However, as I thought about exactly what we required our students to do in the laboratory, I began to think that Kate might be right. In the past we had had students with sight impairments, students with hearing impairments, students with motor impairments, and students with a variety of learning disabilities truly engaged in our laboratory exercises. But we had never attempted to engage someone with Kate's array of impairments.
I thought the question of Kate's involvement was complicated enough that I arranged for a meeting with Kate, her mother, her personal assistant, her counselor at the University's Office of Disabilities Services, a representative from the state's Services for the Blind and Visually Impaired, and our college's laboratory coordinator. After brief introductions, the meeting began with a prepared statement from Kate delivered via her voice synthesizer. Kate had made it clear that she did not expect to "slide by" in any course; on the contrary, she wanted to have the same chance as any other student to learn about biology. Her concern, based on previous experiences in science labs, was that:
I would be expected to do everything everyone else did in the same way they did it and it would not work. In the past, I always felt like I failed rather than the system failed. I need to have clear learning objectives and clear expectations of what I have to do, and those expectations should not change later on. Jay's environmental science class was one of the first times in science when I got to participate with what I could [emphasis added] do. Having had that class with Jay, I know we can work out the lecture part, but I am still worried about lab because I don't see well and I don't move well; and if the lab is based on those skills, I'm in trouble because I can't do them.
By the end of her statement, I realized how far askew my thinking had been. The real purpose of an introductory level laboratory experience is not to have students manipulate things with their hands or even to have them make direct observations. Its real purpose is to impart to each student a strong sense of how the process of science works; a student gains insight into how scientists discover knowledge. All at the meeting agreed that Kate could achieve such an insight and that she should participate fully in the laboratory exercises. The laboratory coordinator and I would work with Kate to determine exactly how she would engage in the process.
That day I gave Kate a copy of the laboratory manual and asked her erstwhile reader, her mother, to go through it with her and write out a list of accommodations that Kate thought would be necessary for each lab. The overall accommodations included (a) time outside of lab to write out answers to questions on the worksheets (we now offer this option to all students), (b) someone to do the physical manipulations of the experiments and someone to record data (the lab is collaborative and students work in pairs anyway), (c) large versions of some of the visual materials (most of the materials were available electronically and could be enlarged; all materials are now), (d) availability of some of the computer software we use in the lab for home use (we obtained permission to do so), and (e) a quiz format other than multiple choice (we worked out a way for Kate to do multiple choice by allowing her to answer a question with a short essay if she could not retrieve the information in the multiple choice format).
Kate also told us how she could participate in virtually every lab. Her strength was in understanding concepts, making connections, and making predictions. She could come to lab prepared to make contributions based on her knowledge. For example, in the mitosis (cell division) lab, she suggested she could come to lab prepared to explain to others how to obtain a representative sample of dividing cells and why it was important to have a representative (i.e., random) sample. As I read through the five pages of how she would participate, I realized that Kate was already deeply engaged in the lab experience. She was well on her way to meeting the central learning outcome of a laboratory experience: having insight into the process of doing science.
I was confident that Kate could be an integral part of the lab and that her experiences there would be true learning experiences. I also concluded that, even though Kate would be working with a lab partner, she would need a personal laboratory assistant. This assistant would verbalize to Kate exactly what her lab partner was doing and would record measurements and observations into the computer when it was Kate's turn to do so. Kate made it clear that she also needed to have agreed-upon alternatives for demonstrating accomplishment of certain objectives in the event that she could not meet them in the same way as other students. The laboratory coordinator and I wrote out these alternatives and provided them for Kate one to two weeks in advance of each lab exercise. For example, instead of viewing a life stage and identifying it in the life cycles lab, the task became "be able to ask the 'appropriate question' about a life cycle that would permit a sighted person to discover what stage was being viewed." Sometimes Kate used these alternatives, sometimes not, but having them available put her at ease in the laboratory so that she could concentrate on doing what she knew she could do. Lastly, I provided additional background information about various concepts being learned or applied in the laboratory. This last accommodation helped meet Kate's associative learning needs.
Of course, not everything went smoothly in the laboratory. It took time for Kate's personal laboratory assistant to work out a reasonable system for communication and to get over "trying to help too much." The time taken for communication tended to put Kate out of synchrony with the other students, thus segregating her from the rest of the class. Ultimately, we discovered it was best to keep up with the other students and let the communication lag. Kate was processing far more than she could let us know while lab was in session. The proof came in her written responses on the take-home worksheets and in her oral (voice-synthesized) presentation about life cycles.
Kate's analysis of her laboratory experience was very informative and encouraging. She acknowledged having learned a variety of things about biology and about how science works, but more importantly she learned a great deal about herself. She wrote:
Most of what I learned was that it [my lab work] was a partnership with everybody working toward the same goal, my successful completion of the lab. I learned that if we tried something and it didn't work, that everybody, not just me, was responsible and it was a system failure not a personal failure. I learned I could use my strengths and do the same activities but in a somewhat different manner, like in identifying the life cycles. And if I have the data, I'm good at analyzing it. I also learned some things about socializing with other people. I even learned to feel safe enough to share my sense of humor.
Here are some things I think are important. I never tried to use my disabilities to get out of hard work. I expected to work hard. I expected to try things that would stretch my capabilities. As long as I was trying, I didn't expect to be blamed when things didn't work. That gave me a lot of freedom to try new things that I didn't know beforehand if they would work out. Sharing responsibility for a failure was very new to me and a very remarkable concept. I didn't expect everything to be perfect and it wasn't, but it wasn't solely my responsibility to make things work.
Constructing a learning environment with shared responsibilities for success was the most important accommodation we made, and it was not until I read Kate’s evaluation of her experience that I even realized we had made it.
The Take-Home Messages
We do not know how many students with multiple severe disabilities have had the kinds of discouraging and disenfranchising experiences that Kate did in her high school and early college tenure, but we suspect it is a high percentage. Such experiences erect their own barriers to seeking further education. For the few who press onward (32.6%), very few find the will and the opportunity to complete a college degree (9.4%) (U.S. Census Bureau, 2001). Our case study of Kate shows that such an outcome need not prevail. True, Kate is highly intelligent and a very hard worker, but even in sum these attributes were insufficient to overcome the barriers erected by curricula that were designed by and for those with few or no medically recognized disabilities. Thus, it is reasonable and prudent to conclude that college curricula must be modified in ways that will be inclusive of and invitational to students with severe disabilities. We also conclude that the modifications must go beyond simple accommodations, like alternative testing modes or conditions, multiple modes of access to course materials, adequate time for all to complete assignments, and so on.
As we have since discovered, the principles of Universal Instructional Design can guide us in making the kinds of modifications that will be truly inclusive of students with severe disabilities (Bowe, 2000). As Higbee (2001) points out, the first step in developing a universally accessible curriculum is to determine its “essential elements.” We need to ask ourselves:
2. Why must they be able to do it or know it? Here we have to be very critical of our answer.
3. In what ways can a student demonstrate that she or he knows the information or can do the task? Here is where we have to rely on our creativity and the creativity of others. For most learning objectives, there is more than one valid means of demonstrating what one knows or can do. Often, as illustrated by Kate, the student can be the best resource for determining these alternative ways.
This is exactly what we did in part as we attempted to discover what Kate should be expected to do in our courses. For example, the study of history generally includes memorization of many dates, important personages, and events. But what is the real importance of knowing these things? What is the essential element here? The history teacher hopes that the student ultimately will be able to understand how and why events unfolded the way they did. In the world history course, students moved on to this level when they worked through the simulations. They demonstrated what they knew factually and, at the same time, learned to refine their ability to critically analyze history. In Kate’s case, the opportunity to demonstrate her knowledge and analytical abilities in this way was crucial. It not only provided the instructor with an additional way of evaluating her achievement, it provided a means by which Kate became an integral part of the class. The same thing happened with the group project in the environmental science course and with the collaborative laboratory experience in the general biology principles course.
Kate had the opportunity to capitalize on her strengths and so was not faced with having to do things that she could not do (an important tactic, see Preston-Sabin, 1997). This approach allowed her to take part in all of the essential elements of the courses. Thus, Kate felt fully included and fulfilled intellectually because she accomplished the same learning outcomes that other students did (and in Kate’s case better than most). It was very important to Kate, and it is very important to the integrity of college curricula, that the level of academic rigor in a course not be compromised in an effort to accommodate a student with disabilities. If we are thoughtful about what constitutes the essential elements of our courses and creative about how students can acquire and demonstrate knowledge, there need be no sacrifice of rigor in designing universally accessible courses.
Thoughtfully following the principles of Universal Instructional Design also places teachers in the position of already having “accommodated” virtually any student who enrolls in their courses. The stress and the inconvenience of last-minute accommodations, which burdens both teachers and students, are eliminated. Because Universal Instructional Design principles incorporate well-established principles for good teaching, UID courses become better courses all around. Our courses are much improved, and we have discovered that virtually all students appreciate having alternative ways to acquire and demonstrate knowledge.
Another very important discovery of this case was the sense of empowerment that accrued to Kate as she engaged in these courses. In all three courses, Kate’s self-confidence in her ability to achieve her potential rose markedly. As she became an integral part of group achievement, she learned that she could participate in and significantly contribute to group work, something she previously had believed she could not do. In the biology lab in particular, she learned that the onus for success was not hers alone but was shared by her and those who designed and delivered the curriculum. This realization, coupled with the availability of alternative ways of demonstrating her knowledge, gave her the confidence to explore new ways of learning. As her self-confidence and array of learning tools increased, she finally felt empowered to design her own unique and very challenging major: "public policy and the ethics of inclusion of minorities." Kate currently is completing her senior year with a cumulative grade point average of 3.9. She plans to attend graduate school in the areas of history of science and public policy. Kate’s future is hers to determine and that is as it should be.
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