[The Montana Professor 15.1, Spring 2004 <http://mtprof.msun.edu>]
Jim Marks
Director of Disability Services for Students
UM-Missoula
Jim Marks. Photo by Hayden Ausland.
I started college in the late 1970s as a sighted student, but finished blind. My eyesight was failing due to a congenital eye disease called retinitis pigmentosa. Back then, when I was 20 years old or so, my eyesight worked pretty well much of the time. But when taking exams I had great difficulty; the words on the page would blur and become indecipherable after only a few moments. I cannot adequately describe the anguish of not being able to demonstrate what I knew about the course material because my disability blocked the way. One of my professors observed what was happening. He offered up an idea that we both felt was worth trying. At the time the professor was conducting research with computers. He gave me access to the computers and a primitive word processor. I could read the monitors with their bright green letters on a dark background, and I could read them for extended periods of time. Instead of using a pen and paper, I used a computer as a means of expressing myself. I have never been the same since then. In fact, the words you are reading now were written on a computer equipped with a screen reader. Since I cannot read a computer monitor any longer, a program called Jaws synthesizes the text into audible speech. I proofread my work with a refreshable Braille display that is connected to my computer. My fingertips read the code and give me most of the details print readers take for granted.
A decade after my first brush with disability accommodations in higher education, I began my career as the head of the office for disabled students at the University of Montana-Missoula. My first student happened to be a young man with a learning disability. I was standing in the middle of the former dormitory-room-turned-office, marveling at its sparse contents, when a loud knock interrupted my reflections. I distinctly remember being lost to the irony of the disabled poster child stereotype and the awareness that the only supplies in my new office were a few near-empty jars of poster paint. The knock jerked me back into the reality of being the one who deals with students with disabilities in a university then not known for its accessibility.
The student, a fine, strapping young man from Butte, Montana, filled my doorway with his body and his frustration. He told me that he was dyslexic, and that he could not survive in his studies in Education without being able to read his textbooks via an audio recording. He said my predecessor promised she would find volunteer readers, but the volunteers rarely materialized, and, when they did, their work was tardy and substandard. "I have a right to talking books," he said, with his feet set wide apart and his fists clenching and unclenching.
I listened, and I agreed that talking books for a student who could not read print well was indeed a reasonable accommodation for a college student with a disability. However, with only a few minutes on the new job, I had no rabbits to pull out of a hat. So, I told the student that I would work with him to find a way to make his textbooks comprehensible. We agreed it would take time, and that there would be plenty of hassles along the way, but that the student would get access to the University of Montana.
Another decade later, the same guy knocked on my office door. This time, he was smiling. And he was dressed in a suit and tie. I asked what brought him to campus. He said he was here to attend the annual Education Career Fair put on by the University's Career Services. I asked him if he was looking for a job. He said that he was here to hire others because he was now a superintendent of schools in a rural Montana public school district. He said he had received a master's degree in educational administration from another university, and that, for a guy who can not read print worth a damn, he was doing pretty well for himself.
Some may ask how it is that a man who cannot read print effectively can become a recognized leader in the education profession. The best answer I can muster is that many people with learning disabilities can indeed read. They just can not read print well enough to keep up with their peers, so they employ alternative formats to print to get the job done. Many listen to audio books while simultaneously reading print. The learning-disabled school superintendent read this way, and the combination permitted him to perform well academically. I know that reading may be accomplished through alternative formats. Admittedly, reading via audio books alone is a far cry from being able to see the richness and substance of print. Much of the form and function of written language is lost to audio book readers. One cannot hear punctuation, paragraph breaks, or other parts of print. We blind readers turn to Braille, which comes very close to the same quality and quantity of function that print affords. Those who only read audio books face a steep challenge in mastering literacy. Nonetheless, it can be done. The proof lies in the outcomes. The challenge for faculty members in higher education working with students with disabilities is to make room for the alternative means students with disabilities require, while yet holding those students accountable to the educational outcomes expected of any student.
Students with learning disabilities often face raised eyebrows whenever they tell others about their disability. For one thing, learning disabilities are invisible. Their effect occurs only within certain settings, although extreme difficulties in routine tasks like reading, writing, and comprehending happen outside as well as inside the classroom a lot more than most initially realize. Yet, as many instructors have told me over the years, it is hard to pick out students with learning disabilities when so many students cannot write a decent essay or read critically. Compounding the difficulties in asserting a learning disability are the high profile newspaper and journal articles that investigate why people from affluent areas are diagnosed with learning disabilities at much higher rates than those from poor locations. And there are judicial decisions that muddy the water with findings that say if the student with a learning disability is performing well academically, then the learning disability must not exist. Underlying all of this is the shame factor: students sometimes hide their disabilities because of the stigma disability brings on otherwise able people. Some actually use the disability as a form of learned helplessness, as though the bar should be dropped and less expected of people with learning disabilities. To say the least, many controversies surround learning disabilities.
In November 2004, I will begin my seventeenth year as the head of Disability Services at the University. During that time, the enrollment of students with disabilities has multiplied seven times. 6.2 percent of the University's student body disclosed their disabilities to the University Spring Semester 2004. That is not a small minority anymore. Of these, 25 percent are students with learning disabilities. In fact, the largest growth during my watch occurred in students with learning disabilities. Spring Semester 2004, enrollment of students with learning disabilities is a whopping 25 times greater than spring 1989 enrollment.
According to the American Council of Education, about 9 percent of any student body in a U.S. college or university is comprised of students with disabilities. According to multiple surveys conducted in the 1990s, students with learning disabilities made up from 2 to 4 percent of the higher education student body. In fact, students with learning disabilities are usually the single largest group among college students with disabilities at any institution of higher learning.
It took an act of Congress to get colleges and universities to open up the ivory tower to people with disabilities. Only a couple institutions in the United States addressed full and equitable access to higher education until Section 504 of the Rehabilitation Act of 1973 became law. Five years later, following a nationwide protest by people with disabilities, the federal government published regulations stating what institutions of higher education, the ones that accepted federal dollars, had to do to comply with the 1973 Civil Rights Law. These regulations did not spell out how compliance would be accomplished; they merely prohibited discrimination against otherwise qualified people with disabilities. Section 504 established that illegal discrimination could be avoided by modifying the non-essential elements of academic programs. Enforcement was and still is complaint driven. In 1990, the Americans with Disabilities Act cemented what 504 began. The ADA added no new components, but it strengthened the idea of full and equitable accessibility to higher education.
A close reading of 504 and the ADA will fail to yield a mandate that says colleges and universities must have a support office or officer for students with disabilities. Rather, the support system, which is now common on campuses across the country, arose as a utilitarian approach to compliance with the laws. Administrators and faculty soon realized that a support office for students with disabilities could manage institutional compliance by concentrating expertise and resources in one convenient and functional package. Students with disabilities began to expect that their school would provide accommodations through a support office or officer. Since compliance is complaint driven, it is no surprise that better support services follows advocacy. The more vociferous the advocacy, the more the support expands. The advocacy first, access second phenomenon explains why the size, quality, and philosophy of disability support offices varies widely from campus to campus.
One of the primary duties of disability support offices in higher education is to decide whom the civil rights laws that protect people with disabilities cover. The definition of disability is fairly simple, but applying it can be complicated. The definition of disability relevant to who gets reasonable accommodations, according to 504 and the ADA, is "a substantial limitation to a major life activity such as seeing, hearing, walking, or other such activities." Learning is one of the major life activities.
Let us look more closely at one group, students with learning disabilities. "Learning disability" is a loose term covering many disabling conditions and functional limitations. The traditional definition of a learning disability used a discrepancy between aptitude and achievement scores on paper and pencil exams interpreted by psychologists, most of whom are school psychologists working in K-12 education. The greater the discrepancy between how the individual was expected to perform and how well the student actually performed in specific learning areas, the more severe the learning disability. By definition, no one with a less-than-average IQ could be labeled learning disabled. One must be smart, but not able to do well in certain aspects of learning, to be called learning disabled. Today, it is more and more common to define learning disabilities as "cognitive processing" deficits that affect things like reading, writing, comprehension of symbols, and other deficits not explained by an overall lack of ability or lack of a sound education.
Generally, higher education assigns the duty of deciding who has a learning disability and who has a right to reasonable accommodations to the institution's disability support office. Some even go so far as to say that no student may be considered eligible for reasonable accommodations unless the disability office says so. I prefer not making the disability support office the center of the universe for students with disabilities, and believe that students should be able to secure accommodations with or without the involvement of the disability office. However, I also believe that instructors are well advised to use the disability office as a resource. Disability offices are just as much a tool for instructors as they are for students.
My office uses two devices to determine whether a student is eligible for reasonable accommodations. We interview the student and review evidence of the disability and its impact on learning. The interview consists of asking the student a series of relevant questions to draw out how disability affects the student's life. Answers to the questions establish a pattern of how the student plans to deal with disability at the university. When we review the evidence, the evidence of disability and its impact may or may not include written diagnostic reports from a qualified professional. If the disability is visible and the requests for accommodation make sense, then the student need not provide documentation of the disability and right to accommodations. But if the disability is invisible or the request unusual, then the documentation must be provided before permanent accommodations are granted. In the case of students with learning disabilities, we always ask for diagnostic reports to verify the disability and the right to reasonable accommodations.
When it comes to learning disabilities, my office relies heavily on the findings of professionals who are qualified to diagnose learning disabilities. It is impossible to tell who is learning disabled simply by observing, and what at first may appear to be a learning disability may be something else entirely. A student may describe symptoms that look very much like a learning disability, but without a good diagnostic, it is impossible to say with any authority that the person has a learning disability. Those who are qualified to diagnose learning disabilities include certified or licensed school or other psychologists, learning disability specialists, speech and language pathologists, and psychiatrists.
Few disability service offices themselves provide learning disability diagnostics. We do not do diagnostics of any kind, and it would be odd to single out learning disabilities for in-house diagnostic services. Disability offices usually provide a list of local professionals who are qualified to diagnose learning disabilities. A diagnosis ranges from $150 to $1,500 or more. In some cases, disability support offices may pay for a second opinion when the documentation of the disability provided by the student is disputed.
Interestingly enough, my professional group, the Association on Higher Education And Disability (AHEAD), developed guidelines for documenting learning disabilities in the mid '90s. The process was brutal. Factions formed over whether the guidelines were too conservative or too liberal. This past summer, AHEAD sunset the guidelines because they had aged into irrelevance. It is impossible to define a learning disability in global ways. Each person and each disability is unique, and the decision to regard anyone as a person with a learning disability must be made only on a case-by-case basis.
Here is the checklist used by Disability Services for Students at the University of Montana-Missoula to make sure that the diagnostic reports for learning disabilities are complete and credible:
Specific diagnosis and date of onset; and
Severity of the disability: mild, moderate, or severe; and
Date of diagnosis and date of last contact with student; and
List of standardized tests or other measures used to assess the following: aptitude, achievement, and information processing; and
Summary of the student's educational, medical, and family history that may relate to the learning disability (must demonstrate that difficulties are not the result of sensory impairment, serious emotional disturbance, cultural differences, or insufficient instruction); and
Summary of how the diagnosis was reached, including description of which learning disability definition was used for the diagnosis, and description of how the learning disability substantially limits a major life activity; and
List of the functional limitations caused by the learning disability which may affect programs in higher education; and
Recommendations for necessary and appropriate accommodations to equalize the student's educational opportunities at the University of Montana such as auxiliary aids and services, academic adjustments, and other reasonable program modifications; and
Other information relevant to this student's academic adjustment; and
Signature and contact information of diagnostician including mailing address, telephone number, and e-mail address.
The bulk of students with learning disabilities enter higher education from high school with a diagnostic report in hand. Due to changes in the 1997 amendments to the Individuals with Disabilities Education Act (IDEA), the diagnostics may be several years old. Before 1997, each child served under IDEA had to have a new diagnostic report every three years. Some advocates felt that the constant assessments were unnecessary and that the parents, teachers, and other school officials could confirm the continued effects of the learning disability functionally in the education process. Disability services offices tried to maintain a three- to five-year assessment requirement following the 1997 amendments, but pressure from several quarters, including legal decisions, rendered this requirement vague and hard to assert. We require diagnostics to be up-to-date, but how up-to-date depends on the particulars of each student's situation. A diagnostic report conducted when a student is a second grader may be too dated for a disability services coordinator to determine disability and the right to reasonable accommodations, even if that student received IDEA services throughout grade and high school. Learning disabilities cannot be cured, but they do change through the development of the child into an adult. At the same time, a diagnostic may reveal some things about the effects of a disability, but how the disability plays out in real life tells more about the impact of the disability than the diagnostic will. The best-case scenario is to secure both a substantial diagnostic report and a history of difficulties and interventions evidenced in the classroom and beyond.
A huge gulf exists between K-12 and higher education where disability is concerned. In grade and high school, children with learning and other disabilities have a right to a free and appropriate education. In higher education, students with learning and other disabilities merely enjoy the right to educational opportunity. In blunt terms, the difference is that, in college, we can and will flunk students if they fail to perform adequately even if a disability is involved, whether accommodations are used or not. Grade and high schools frequently meet the right to a free and appropriate education by dropping the bar and expecting less of students. They strive to educate children with disabilities to the best of the child's ability, yet it is sadly routine for students with learning and other disabilities to perform at standards much lower than that expected of children without disabilities. Consequently, the transition to college can be a shock for these students. Accustomed to low expectations, they must relearn accountability in order to find success in post-secondary education.
Another issue that higher education sees and grade and high schools ignore is the bright student with a learning disability. Learning disabilities affect intelligent people. If their intelligence is such that they perform at average levels, grade and high schools may choose not to provide any special educational services to compensate for the disability. When these high functioning students get into college, they find the courses much harder and their peers much smarter than they encountered earlier. Many "discover" learning disabilities for the first time while going to college. Disability services offices will not serve students like these until they secure good diagnostic reports from qualified professionals.
Parents of students with learning disabilities often think that what happened in high school will carry on in college. Nothing could be further from the truth. Whenever he hears that a college should be bound by what happened in high school, a colleague of mine quips that their bureaucracy is not compulsory on ours. "We have our very own bureaucracy, thank you very much", he says with a smirk.
Not surprisingly, most students react to the accommodation process in higher education much differently than their parents do. Many students will be so weary of the K-12 system that they refuse to use what is available at the post-secondary level. "I want to try it without help," say many students with learning and other disabilities. They are startled when we reply that they will not get any help from the Disability Office. Instead, we emphasize that students help themselves. All we do is to assure equal access to studies. Academic success is up to the student regardless of whether accommodations are used or not.
After my office determines whether the University will acknowledge the disability and the right to reasonable accommodations, we employ best practices in coordinating and providing accommodations. The best practices are those that follow emerging trends that let the accessible learning environment and high expectations for the student live in peace with one another. Disability services offices should refrain from doing for students what they can do for themselves, shift the focus of control over accommodations from the university to the student, and endorse the dignity of risk and high expectations for the students, while simultaneously endorsing academic freedoms and standards of the institution.
An understanding of what constitutes disability discrimination in higher education guides us as we go about the task of prohibiting illegal discrimination. Most understand discrimination to be unequal treatment, but disability discrimination involves a pro-active effort on the part of post-secondary education to steer clear of civil rights violations. In other words, treating everyone the same is not enough. Higher education must treat people with disabilities differently from others. Of course, the special treatment is far from a new concept. Thomas Jefferson said, "Nothing is more unequal than equal treatment of unequal people." Oliver Wendell Holmes extended the thought when he said, "There's no greater inequality than the equal treatment of unequals."
Disability discrimination happens when barriers limit or deny otherwise qualified people with disabilities equal access to programs solely on the basis of the disability. Not everything must be barrier free, but enough parts of a program must be accessible so that no unnecessary limitations or denials of access occur. Disability service offices can be said to be in the barrier removal business. We remove barriers by modifying non-essential parts of academic programs, the parts that do not matter for achieving the academic purpose of a course. Modifications that would fundamentally alter the program are not required, even when the disability may be the cause of the exclusion. So, in order to avoid committing illegal discrimination, higher education must sometimes change the way learning is accomplished so that the learning is accessible by otherwise qualified people with disabilities.
The gate keeping duty of the Disability Support Office is far from over once the Office acknowledges a disabling condition. We must determine how the condition affects learning. Moreover, we must link the functional limitations of the condition to the reasonable accommodation requested. For example, a student with a learning disability in written expression may be able to read and comprehend well, but be unable to express him or herself in writing due to the disabling condition. Providing this student with talking books would be pointless because the student has no functional limitations in reading. Yet, allowing the student to use a computer for writing tasks could be a reasonable accommodation because a computer's word processing program permits the student to express ideas via alternative means. It is a matter of function and how the disability limits functioning in higher education.
Faculty members are obligated by law to accommodate students with disabilities when the accommodations are reasonable. Notices of the professor's willingness to accommodate should be given on course syllabi or in the opening lecture of a class. The best notices are simple ones. For example, a professor may say, "Students with disabilities who plan to make accommodation requests should see me after class or during my office hours." Not every request need be granted. Accommodations must be reasonable. While no prescription or one-size-fits-all modification exists, faculty members may deny accommodation requests that fundamentally alter academic standards.
Good disability support offices encourage faculty members to engage the accommodation process and to consider whether accommodations fundamentally alter academic standards. I detest the abuse of the civil rights protections for people with disabilities by closing off dialogue and negotiations between students and professors. Moreover, I detest a cookie cutter approach to accommodating students with disabilities in higher education. Each situation should be examined, and careful thought should determine our actions. Professors should not be afraid to ask questions and to assert high expectations. It is proper and legal to deny accommodation requests that drop the bar. However, assertions that a requested accommodation implies a fundamental alteration of a course requirement should be made at the departmental level rather than individually. Should a student dispute denials of accommodation requests, group decisions carry more credibility than those made by lone faculty members. Many faculty members relish the reflection on what they are doing and how they do it, so accommodation requests could be regarded as opportunities to take intensive looks at the purposes and methods of courses. Maybe the accommodation will work well, maybe not. Either way, academic programs may be strengthened in the accommodation process.
The often unspoken truth about disability support offices in higher education is that we have only a few accommodations in our bag of tricks. The set of possible accommodations is not only finite; it is small in number. Perhaps most common is extended time on exams. The majority of course exams assess content knowledge of the course's subject. The time it takes to demonstrate the content knowledge usually does not matter, so granting extra time for students with learning and other disabilities is routine. The disabilities functionally limit the students' abilities to read and write quickly, and the extra time gives them the breathing room to show they know the course material. It is common to extend exams by 1.5 to double the time allotted students without disabilities. In a very few cases, students get more than double time, but higher education never grants unlimited time because it is administratively impossible and because all the time in the world will not improve content knowledge during the test.
Some exams measure the rate test takers can complete tasks. For example, typing speed tests measure how fast students can type. Granting extra time in a typing test would fundamentally alter the assessment. Thus, extra time would be unreasonable. Other exams measure skill acquisition. Skill demonstration may be time bound, so, again, extending the time of the demonstration could fundamentally alter the program. Modifications that fundamentally alter programs are unreasonable and may be denied legally.
A few instructors like to give students more testing material than the students can complete in a class period. They compare student performance based on how much of the test material was completed. "Power tests" like these turn questions of whether to grant extra time as an accommodation into a major battle. Students with learning disabilities who can demonstrate content knowledge through the extension of the testing time will not be able to show their stuff if denied the extra time. But if the student really does not need the extra time, then it allows the student to complete more of the exam, thereby letting that student's performance appear to be better than it is. When battles over extra time for "power tests" emerge, the quality of the verification of the disability and the right to accommodations becomes paramount. Instructors must feel confident that the disability service office knows what it is doing. In addition, instructors must take another look at how they assess students. Do the tests they use measure what they intend? Is the measurement relevant to the course outcomes?
Every once in a while, instructors approach me with concerns. They say that many students claim disability, especially learning disabilities, and they say that the "real world" will not allow for all the breaks we give students with disabilities. It is as if the instructors believe that treating everyone exactly the same way is fair and that students hide under the skirts of disability rights in order to take advantage.
The lack of confidence in the Disability Service Office's ability to decide who gets the reasonable accommodations concerns me a great deal. Idealists say that disability services offices exist to assure an accessible learning environment for people with disabilities. Skeptics say the offices merely exist to protect institutions of higher education from lawsuits and other civil rights complaints. Some cynics go so far as to say the disability offices water down expectations and contribute to a general decline in academic standards and freedoms.
When one has a disability, including a learning disability, two options exist. People blend the two options for the best effect. Option one fixes the environment so it is accessible. Option two fixes the person through positive changes in attitudes, behavior, and skills. Too many people who ought to know better get suckered into thinking that every disability problem may be solved environmentally. But environmental access works if, and only if, the individual assumes the personal responsibility to handle self-determination and self-reliance. Disability service offices rank among the worst offenders in insisting on environmental fixes when the issue is not environmental. We end up doing for students what they can do for themselves.
"Universal design" in instruction is a trendy theme promoted by many disability service offices today. "Universally designed" instruction would change how instruction is delivered so that environmental barriers evaporate. Disability, which is regarded as a social construct by the advocates of universal design, would be rendered non-existent, and each student, with or without a disability, would enjoy equal footing in the universally designed classroom. For instance, instead of requiring students to write in-class essays with blue books and pens, all students would take their exams on a computer. Another example would be that class notes would be provided to all students, not just those with relevant learning disabilities.
Changing the way we teach in higher education may be something worth doing, but we should not fool ourselves into believing that disability will go away if only enough access is poured on the learning environment. No matter how smooth the path to learning, disability and its consequences remain. It only makes sense that people with disabilities must learn how to be good at being disabled in order to achieve in any world, real or otherwise. College remains today what it always has been, a place to make mistakes and to grow from them. If we neglect personal responsibility when instructing students with disabilities, we ignore the very place where the most mistakes and the most learning traditionally occur. In addition, students gain a sense of who they are while in college. Too much accessibility could distort perceptions so much that students with disabilities fail to regard themselves as being disabled. Identifying with one's abilities and disabilities grounds people for the challenges life throws at us.
The best disability service offices assure an accessible learning environment through a process by which students learn self-determination and self-reliance. Success in this venture turns on the competence of the disability service office to forge partnerships among the student, the faculty, and other disability supports such as medical and vocational rehabilitation services. Disability service offices should encourage students with disabilities to talk frankly with their professors about disability and encourage professors to return the favor. Both the student and the professor should regard the disability service office as a resource. And the disability service office should work with other community providers of services. We should enter into the partnerships with a mind to eradicating disability discrimination while maintaining academic standards and freedoms.
Remember the young man described at the beginning of this article? He came expecting an accessible learning environment through talking books. I had no magic to offer. But what I did have was a sense of how people with disabilities have to keep their expectations high. Talking books and other elements of access do not just occur out of the goodness of a university's heart. Someone must insist on the access and be willing to put everything into making the dream a reality. I showed the student some places he could find talking books and what talking books looked like when they were constructed properly. I showed him that a single method would be inadequate; so many means of securing access to the printed word would be necessary. We looked at not only libraries of alternate formats; we also looked at readers, computer reading technology, and other tools in the toolbox. I showed him how to go to professors and the bookstore to get the titles of the books early so that there would be adequate time to secure the alternate formats. I showed him how to approach professors with requests for accommodation that built on the student-teacher relationship. Along the way, the student learned how to fend for himself. He learned not to depend on the kindness of strangers, that disabled people could make good things happen for themselves. And he did the work expected of him so that no academic standard or freedom was compromised. That is the spirit of access and the stuff of which non-discrimination is made.
[The Montana Professor 15.1, Spring 2004 <http://mtprof.msun.edu>]