The United States’ enrollment of disabled students in higher education has grown at twice the rate of abled students since the passage of the Americans with Disabilities Act (ADA) in 1990 (Addock, 2015). A result of this legislation is that universities are obliged to provide adequate accessibility for disabled students. With these advancements in disability acknowledgments and accommodation, we began to learn more about disabilities as a whole. And thus a debate about the logistics of offering accommodations in universities exploded. To this day, there is extensive debate on what accommodations should be offered and to whom. This debate, though confusing, has been helpful to the advancements of disabled students — it has resulted in powerful change. However, there are some students that amidst all this advancement and conversation, often get excluded. Begging the question, who are these students and why are they not being accommodated? There are many disabilities that are difficult to identify and often go undiagnosed, unrecognized, and unreported. These less visible health challenges are known as; invisible disabilities. Within the disability community, students with invisible disabilities are particularly liable to fall through the cracks of university disability policy.
One quarter of people with disabilities do not use an assistive device (Connell, 2016). Unless these people choose to disclose the nature of their disability, it can be difficult for outside observers to recognize the struggles of the individual. For example, people suffering from Crohn’s disease do not use any sort of visible assistive device to manage their illness. Diabetics with insulin pumps typically conceal their devices underneath clothing, effectively making their condition invisible. In addition to physical ailments, psychiatric disorders are invisible by nature, and can vary in their severity over time. Moreover, some people struggle with diseases like ulcerative colitis, whose symptoms can be extremely unpredictable and therefore difficult to diagnose or accommodate (Rosenthal & Rosenthal, 2015). Learning disabilities also fall under this category of mental impediments, and these can also be hard to detect for many years. These factors can make it difficult for experts to diagnose certain disorders, and they also present unique challenges when discussing what sorts of accommodations are necessary and proper for students with such conditions.
Perhaps the most common culprit of preventing students with invisible disabilities from accommodations is the university’s disability accommodation policy itself. University disability accommodation policy in America is difficult to navigate. More importantly, university disability accommodation policies often leave a huge gap that students with invisible disabilities frequently fall into. The ADA is one of the few documents that contains rhetoric directed towards accommodating disability. The ADA is a piece of legislation which prohibits discrimination against people with disabilities in the United States (1990). One would presume that this document advances the quality of accommodations for disabled college students, but the ADA unfortunately does not spend as much time detailing the rights of disabled students as it does disabled employees. The ADA states that employers are required to provide reasonable accommodations to their disabled employees, but in regards to schools–which are mentioned briefly and later in the document–the ADA only states that schools must be accessible, not accommodating. It is possible that the US government did not feel it necessary to focus on students with disabilities because of the existence of the Individuals with Disabilities Education Act (IDEA), which states that all disabled American students must be provided with free public education that is appropriate to their needs. The IDEA lays out requirements for an IEP team, special needs teachers, counselors, etc (Eckes & Ochoa, 2005). The problem is that the IDEA only applies to students from kindergarten to twelfth grade. Meaning, that disabled college students in America, especially those with invisible disabilities which are more difficult to recognize, are left in a huge gap wherein neither the IDEA nor the ADA specifically applies to them. Therefore, disabled US college students do not have any legislation which details how universities should go about accommodating them, what accommodation they might need, how they should go about receiving accommodations, or who should be giving these accommodations.
Of course this has not hindered universities from having disability accommodation policies, but it does make it much more difficult for university disability policies throughout the US to be well organized, consistent, and effective. In a 2005 study, Dr. Mary Collins and Dr. Carol Mowbray collected data from 275 colleges and universities nationwide pertaining to how these institutions accommodated their disabled students. The researchers found that all of the campuses surveyed had some sort of disability resource center and a general outline for obtaining accommodations for any disability. The outline provided is problematic for disabled students in general, but it proves an even bigger obstacle for those suffering from invisible disabilities. The outline starts out with a student providing documentation of his/her disability, such as a doctor’s diagnosis. Note that Individualized Lesson Plans (IEPs), used in the K-12 grades, are not listed as valid documentation. Given that the need for IEPs are often times evaluated and decided on by the staff of a student’s K-12 school, there is often no doctor’s diagnosis available for the student to personally use (Stanberry, 2014). Meaning that many students with disabilities might have to start out their college experiences with getting a doctor’s note. This can be tricky because the process of getting a disability diagnoses from a doctor is already a time-consuming and arduous process, especially for someone with an invisible disability. As previously mentioned, it can be difficult for students to get a disability diagnosis when they have an infrequent or invisible disability. Furthermore, some students might not have access to good doctors who will take the time and energy to give them a proper diagnosis. And so, this step of getting documentation of one’s disability might not be as simple as it seems. Meaning that a student who might have been covered via IEPs thus far in their schooling, might not be able to get that same accommodation in their higher education courses. Moreover, this applies to students who are just developing or recognizing their disabilities and similarly might have trouble getting that documentation. Overall, there are a lot of speed bumps involved for invisibly disabled students during this step of obtaining an accommodation in higher education.
The general outline for the accommodations process for higher education institutions is then followed by the disabled student discussing what disability accommodations they may need with their disability support service coordinator. In this discussion, the coordinator will first determine whether or not a student’s disability makes them eligible for accommodation. Then, the coordinator will determine whether or not the university can grant the student the accommodations he/she is asking for. Often, higher education institutions do not give students the accommodations they ask for, but instead choose options that may be cheaper or require less effort on the part of the school (Flannery, Murray, & Wren, 2008). Then, the student’s accommodation request is passed onto the student’s professor. Under university policy, professors must follow the accommodation plan given to the student, however, in some cases the professor might not take these accommodations seriously or might have too large of a class to ensure that these accommodations are adequately covered (Flannery, Murray, & Wren, 2008). And even if a disabled student follows all of this protocol, they still could be denied. Research shows that students with invisible disabilities might need to appeal their university’s accommodation department two to three times before getting accommodated, if at all (Jager-Hyman, 2014). And so, while the road to accommodation is difficult in any scenario, the presence of an invisible disability complicates and aggravates the situation. Furthermore, the accommodation policy system for higher education in America is not organized in such a way that grants accommodations to those who need them within a reasonable amount of time.
While there is not much research on how people with mental illnesses are kept from receiving accommodations, there is fortunately ample data on how people with learning disabilities–disabilities that can also be labeled as “invisible”–are withheld from accommodations.
Students with learning disabilities are a very large proportion of the students with invisible disabilities. At the University of Illinois in Urbana-Champaign, students with learning disabilities, ADHD, and other psychological disabilities are the most commonly accommodated groups on campus (UIUC, 2015). There are several reasons why students with learning disabilities may not receive accommodations. One of them is the difficulty of transitioning between high school and university. During this transition period, many students are susceptible to developing new disabilities, and those with previous conditions must navigate the sometimes complex infrastructure of university disability policy.
Some students receive accommodations in high school without having to ask and that’s just been given to them. These students may get lost in the arduous process of requesting accommodation through university policies. The Individuals with Disabilities Education Act(IDEA) requires that students actively participate in the transition process from the secondary to postsecondary setting because it can prepare students with the knowledge and information they need in college(Cawthon & Cole, 2010). According to IDEA, schools are required to provide an Individual Education Program (IEP) plan and students are also required to take all IEP transition meetings(Cawthon & Cole, 2010). However, research has shown that 35% of states failed to invite students to participate in their IEP meetings(Cawthon & Cole, 2010). Even if students attend their IEP meetings, active involvement by the student in IEP formulation is still difficult. Students often feel lost and do not understand what’s going on during the meetings. Studies have shown that students’ lack of involvement in their transitional IEP meetings may lead to low levels of academic preparedness for college and lack of adequate understanding of disability law(Cawthon & Cole, 2010). Thus, transition meetings are a fruitless endeavor for many students.
Another difficulty for learning-disabled students is that their disability may go undiagnosed altogether. There exists a subset of learning disabled students’ whose conditions are not diagnosed until much later than the rest of the learning-disabled population. This subset is of students who display “giftedness”. In a study of new college students with learning disabilities, those whose profiles displayed “giftedness” were diagnosed with learning disabilities later than their peers who did not display “gifted” profiles (Ferri, 2016). The researchers suggest that students with high intelligence and a learning disability appear to be normally functioning students, as the two traits “cancel each other out”. This results in a sect of students who experience learning and social difficulties but fail to be identified by classical screening processes, and therefore do not receive proper treatment/accommodation. This raises questions about both disability screening processes and the nature of “gifted” classification. Many students also struggle with anxiety and depression without having been diagnosed and therefore cannot provide proper documentation for accommodations. Students at large are vulnerable to developing these disorders during the first years of college but many are reluctant to report their condition (Rodgers 2015). As a result, many of these students “fly under the radar” of university disability policy (Rodgers, 2015).
Reluctance to identify within the disability community is a major reason why students with invisible disabilities are under-accommodated on campuses. There are many students who qualify for disability accommodations but do not request them. In a recent British study, researchers found that when dealing with students with mental illness, tutors reported that the biggest difficulty was students’ unwillingness to receive help. The tutors attributed this to the stigma related to mental health issues (Collins & Mowbray, 2005). Many students will go on concealing their condition rather than seek help. “While these students are as eligible for protection under federal law as their more observable peers, they may be more subject to misconceptions and stereotypes regarding the legitimacy of their disability and their need for protection (Wolf, 2001).”
A social stigma known as ableism – the attitude that the disabled are inferior to the abled – permeates our society at large in similar fashions to racism and sexism; rather than being indifferent to the plight of the disabled, the abled are often simply unaware of the biases they hold. This cultural thread not only discourages students from seeking accommodations, but it also results in friction between university faculty and those students who have accepted a disabled identity. Often, students with invisible disabilities seeking accommodations are suspected of trying to “game the system” or gain an unfair advantage over their classmates by claiming disability (Whalen 2016). Jonathan Goldstein of Cornell University says that “ableism is something [he] experience[s] quite frequently” (Whalen, 2016).
A common result of this stigma is negative interactions with universities’ faculties. Although research has found that faculty members consider themselves to have positive attitudes toward students with learning disabilities and are willing to accommodate and advocate for them in their classes, students often do not feel the same way. Students sometimes feel that university faculty consider them incompetent and need extra help to succeeded. Students also feel that faculties believe that students with learning disabilities should not be enrolled in classes(Cawthon & Cole, 2010). The fact that university staff knows little about students’ disabilities is also a major reason of the negative interactions. Leyser, Vogel and Wyland had examined a large Midwestern research university to study knowledge, attitudes and practices regarding students with disabilities. Of the 420 faculty who responded to the survey, 66.7% of them indicated they had no familiarity with Section 504 of the Rehabilitation Act, while 14% indicated they had only very limited familiarity with it(Barazandeh). This is also true for students with invisible disabilities since such disorders are non-visible and tend to be stigmatized by our society. Many faculty members reported that they had limited knowledge about invisible disabilities and appropriate accommodations for students with learning disabilities. And this can have negative impact on students’ performance. Angela Winfield of Cornell University maintains that awareness of disability on college campuses is key to overcoming the effects of ableism (Whalen, 2016). Indeed, there is much work to be done in spreading awareness of disability on college campuses. Winfield remarked that “the best kept secret on campus” is that Cornell University houses 1 of the 10 Americans with Disabilities Act centers in the country.
Faculty aren’t the only ones who struggle to identify proper accommodations for their disabled students. The students themselves are often ill-informed about their own disability, either because they are in the process of developing a psychiatric disability, or they fail to recognize their symptoms and seek help. Recognizing the nature and severity of one’s disability is crucial for students’ academic success. “Improved retention rates among learning disabled students have been associated with a higher level of self-understanding and awareness of the impact of the disability, knowledge of available resources and supports, self-advocacy and other interpersonal skills, use of effective study strategies, and use of appropriate accommodations” (Wolf, 2001).
The prevalence of psychiatric disabilities among the student body may normalize certain symptoms, and thus contribute to students’ failure to realize something is wrong. One study of college students’ Facebook profiles revealed that 1 in 4 students displayed symptoms of depression in their status updates, and 2.5% met the criteria for a major depressive episode (Moreno, 2011). The researchers claim that their results can be generalized to other college student populations. If this is true, we can see that depressive disorders must be very common among college students. For college-aged students, diagnoses of psychiatric illnesses typically begin with self-reporting their symptoms. A failure to self-report and diagnose these disorders may be due to a normalization effect. We certainly see a similar effect of normalization on binge drinking on college campuses. Students are likely to underestimate the dangers of binge drinking and alcoholism, and therefore more likely to engage in it, if they’re in a setting where they perceive this behavior as safe and common (Groskaufmanis, 2016). Likewise, we can understand students’ failure to identify or report symptoms of their own depressive disorders if these symptoms are common among their peers. Staying in bed all day is an example of one such behavior that is easily normalized. Rather than recognizing this as a symptom of depression, it may be rationalized as laziness or boredom.
The data we have collected has helped us understand unaccommodated disability on a much larger scale. However, there are many limitations to our research which hindered our ability to completely understand this problem. One such limitation was that we were unable to find out exactly how many students go unaccommodated at a university in a given class. Another was why exactly certain students chose not to report their disabilities for accommodation. While we listed some research on this topic, including testimonials featured in scholarly journals, we can never truly know the thoughts of our subjects or what drives them to make the decisions they make. Lastly, although we tried, we cannot grasp the true extent of every reason a student does not get accommodated by universities. Again, invisible disability is a complex and widespread issue, it would be impossible to know every reason that a person with an invisible disability did not receive an accommodation.
Our research presents the situation of students with invisible disabilities and analyze major reasons why they do not get accommodations in college. To better understand their troubles and help them during college, the future researches could not be restricted to do surveys. If we can do surveys among these students, we can obtain more accurate information about their need. It would be a great if universities could keep track of students who have trouble in school and might need an accommodation but they do not obtain one. By doing this, the university could adjust policies to provide appropriate help and satisfy their request. Since our research does not have the exact number of students who need accommodations and who actually have one, using statistics might help. For example, one could calculate statistically how many students at a university should have a disability in need of accommodation and compare that to how many actually have one.
Adcock, P. (2015, September 27). On anniversary of ADA, enrollment among students with disabilities increasing. Retrieved March 28, 2017, from http://www.redandblack.com/uganews/on-anniversary-of-ada-enrollment-among-students-with-disabilities-increasing/article_671fbea4-30cc-11e5-9db7-2781ea804d05.html
Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990).
Barazandeh, G. (n.d.). Attitudes Toward Disabilities and Reasonable Accommodations at the University. Retrieved March 15, 2017, from .urop.uci.edu/journal/journal05/01_barazandeh.pdf
Cawthon, S. W., & Cole, E. V. (2010). Postsecondary Students who have a Learning Disability: Student Perspectives on Accommodations Access and Obstacles. Retrieved March 15, 2017, from http://files.eric.ed.gov/fulltext/EJ906696.pdf
Collins, M. E., & Mowbray, C. T. (2005). Higher Education and Psychiatric Disabilities: National Survey of Campus Disability Services. American Journal Of Orthopsychiatry, 75(2), 304-315. doi:10.1037/0002-94126.96.36.1994
Connell, W. [Invisible Disabilities Association]. (2016, April 13). Invisible No More! 7 Realities of the Invisible Becoming Visible. LIVE Conference. [Video File]. Retrieved from https://www.youtube.com/watch?v=Ba6N1toGDOk
Eckes, S., & Ochoa, T. (2005). Students with Disabilities: Transitioning from High School to Higher Education. American Secondary Education, 33(3), 6-20. Retrieved from http://www.jstor.org/stable/41064551
Eide, F. (2016, January 18). Dyslexia and Accommodations – New ADA Guidelines 2016 for School and Work. Retrieved March 5, 2017, from http://www.dyslexicadvantage.org/dyslexia-and-accommodations-new-ada-guidelines-2016-for-school-and-work/
Ferri, B.A., & Gregg, N., & Heggoy, S. J. (2016). Profiles of College Students Demonstrating Learning Disabilities With and Without Giftedness, Journal of Learning Disabilities, 30(5), pp. 552-559
Flannery, B., & Murray, C., Wren, C., (2008). University Staff Members’ Attitudes and Knowledge about Learning Disabilities and Disability Support Services. Journal of Postsecondary Education and Disability, 21(2), 73-90. Retrieved March 20, 2017, from https://eric.ed.gov/?id=EJ822095.
Grasgreen, A. (2014, April 2). Students with Disabilities Frustrated with Ignorance and Lack of Services. Retrieved March 05, 2017, from https://www.insidehighered.com/news/2014/04/02/students-disabilities-frustrated-ignorance-and-lack-services
Groskaufmanis, L. (2016, September 23). A culture of alcohol expectation. Retrieved March 22, 2017, from http://www.dukechronicle.com/article/2016/09/a-culture-of-alcohol-expectation
Jager-Hyman, J. (2014, February 07). Receiving Testing Accommodations for Learning Disabilities. Retrieved March 27, 2017, from http://www.huffingtonpost.com/joie-jagerhyman/receiving-testing-accommo_b_4740601.html
McLachlan, Megan. “Going Away to College: Data on 350,000 HS Grads – Niche Ink.” Ink: Niche Insight Analysis. N.p., 27 Jan. 2015. Web. 20 Mar. 2017.
Moreno, M. A., Jelenchick, L. A., Egan, K. G., Cox, E., Young, H., Gannon, K. E., & Becker, T. (2011). Feeling bad on Facebook: depression disclosures by college students on a social networking site. Depression & Anxiety (1091-4269), 28(6), 447-455. doi:10.1002/da.20805
Rosenthal, I. M., & Rosenthal, S. R. (July). About Crohn’s Disease and Ulcerative Colitis. Retrieved March 21, 2015, from http://www.crohnscolitisfoundation.org/
Stanberry, K. (2014). Understanding Individualized Education Programs. Retrieved March 20, 2017, from https://www.understood.org/en/school-learning/special-services/ieps/understanding-individualized-education-programs
UIUC. Profile of Students, Faculty, and Staff by Racial/Ethnic Group, Gender, and Disability (Rep.). (2015). Retrieved http://www.pb.uillinois.edu/documents/participreports/undrepbot15.pdf
Whalen, R. (2016, November 30). Overlooked and Unaddressed: Students Recount Fighting Ableism on Campus. The Cornell Daily Sun. Retrieved February 28, 2017, from http://cornellsun.com/2016/11/30/overlooked-and-unaddressed-students-recount-fighting-ableism-on-campus/
Wolf, L. E. (2001), College Students with ADHD and Other Hidden Disabilities. Annals of the New York Academy of Sciences, 931: 385–395. doi: 10.1111/j.1749-6632.2001.tb05792.x