Unrecognized, Undiagnosed, and Unreported: College Students with Invisible Disabilities

The United States’ enrollment of disabled students in higher education has grown significantly since the passage of the Americans with Disabilities Act (ADA) in 1990 (Lindstrom, 2007).  While we have made advancements in the field of disability to accommodate this growth, there are still some students that often get excluded. “[During the 90s], while the overall proportion of full-time freshman reporting disabilities appears to have remained stable, at about 9%, the number of learning disabled students has increased significantly” (Wolf, 2001, p. 386).  One argument for why so many students are not getting accommodated is because they might have disabilities that are not easily recognized (McGuire, Gordon, & Keiser, 1998). 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 (Grasgreen, 2014). So why are these invisibly disabled students more liable to being accommodated by university policy? It is possible that invisibly disabled students are not be accommodated because professors are being dismissive of invisible disabilities or possibly because students are not reporting their disabilities out of fear of the stigmas associated with disability.  Furthermore, one must recognize the difficult policy process for obtaining a disability diagnosis and an accommodation as a hinderance to invisibly disabled students obtaining the help they need. Overall, we find that the reasoning behind why invisibly disabled students are more likely to not be accommodated is interwoven within a variety of complex topics including stigma, normalization, university policy, and failure to self report. We argue that students with invisible disabilities are less likely to be accommodated in higher education because their disabilities frequently go undiagnosed, unrecognized, and unreported.

Invisible Disability

Assistive devices have become the symbol of disability through logos on disabled parking and bathrooms and entrances, but this has had the unfortunate effect of combining disability with assistive device in the public imagination. Studies have shown that 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 with Crohn’s disease or a learning disability typically do not use a visible assistive device to manage their condition. Some invisible disabilities, such as schizophrenia and ulcerative colitis, are difficult to accommodate because their symptoms are unpredictable and can vary in severity over time (Rosenthal & Rosenthal, 2015). 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.

Postsecondary Transition

The transition between secondary and postsecondary education is one area where policy leaves students behind. According to the Individuals with Disabilities Education Act (IDEA), K-12 schools are required to provide an Individual Education Program (IEP) plan (Cawthon & Cole, 2010). IEP’s have been linked to increased success for disabled students in K-12 education (Fisher & Frey, 2001). However, 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. IEP programs are not typically, on their own, sufficient documentation to receive accommodations at postsecondary institutions. The Individuals with Disabilities Education Act(IDEA) also 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). However, research has shown that 35% of states failed to invite students to participate in their IEP meetings (Cawthon & Cole, 2010). 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). Students go from having this extensive accommodations program laid out by the IDEA in their K-12 years to not having any government mandated accommodation requirements in higher education.  The Americans with Disabilities Act (ADA) is supposed to cover this gap, but the ADA only requires postsecondary institutions to be accessible, not accommodated.  Note in the ADA, the definition of a “reasonable accommodation” available to “the public” are as follows:

“job restructuring, part-time or modified work schedules, reassignment to a vacant position, acquisition or modification of equipment or devices, appropriate adjustment or modifications of examinations, training materials or policies, the provision of qualified readers or interpreters, and other similar accommodations for individuals with disabilities”  (Americans with Disabilities Act of 1990).

In this lengthy description of available accommodations, there is no mention of postsecondary, students, institutions, or education. This lack of postsecondary student coverage by the ADA leaves students without any of the thorough accommodation coverage they utilized in K-12.

Effects of Ableism

Reluctance to identify within the disability community is a major reason why students with invisible disabilities are under-accommodated on campuses. Many students will go on concealing their condition rather than seek help. Nicole Agaronnik said to the Cornell Sun, “I’m about to take a test, I don’t need to be disclosing about my disability” (Whalen, 2016, par. 3). Stigma surrounding disability discourages some students from seeking appropriate accommodations. “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, p.387 ).

A social stigma known as ableism – the attitude that the disabled are inferior to the abled – is one major reason why students may avoid identifying as disabled. 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. Jonathan Goldstein, the president of Cornell Union for Disability Awareness, says that “ableism is something [he] experience[s] quite frequently”(Whalen, 2016, par. 7). Goldstein says that “I personally receive extended time for exams as one of my accommodations, and I’ve had some faculty who’ve said things like, do you really need that? Or, you’ll get a higher score because you have more time”(Whalen, 2016, par. 7).

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 (Whalen, 2016,  par. 14)

Failure to Self-Report and Diagnose

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. Others may go undiagnosed due to failures of existing disability screening processes. 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, p. 390).

One 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, pg. 552). 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” (Ferri, 2016, pg. 552). 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.

The prevalence of psychiatric disabilities among the student body may normalize certain symptoms, and thus contribute to students’ failure to realize something is wrong. Students at large are vulnerable to developing depression and anxiety within their first years of college, but many are reluctant to report their condition and are therefore not diagnosed (Rodgers, 2015). As a result, these students “fly under the radar” of university disability policy. 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.

Limitations and Suggestions

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. It would be helpful if we could ask students to complete surveys in order to understand this topic more thoroughly. 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.

 

Bibliography

 

Americans With Disabilities Act of 1990, 42 U.S.C. § 12111 (2008).

 

Barazandeh, G. (n.d.). Attitudes Toward Disabilities and Reasonable Accommodations at the University. Retrieved March 15, 2017, from http://www.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

 

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

 

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

 

Fisher, D., & Frey, N. (2001). Access to the core curriculum: Critical ingredients for student success. Remedial and Special education, 22(3), 148-157.

 

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

 

Lindstrom, J. H. (2007). Determining Appropriate Accommodations for Postsecondary Students with Reading and Written Expression Disorders. Learning Disabilities Research & Practice (Wiley-Blackwell), 22(4), 229-236. doi:10.1111/j.1540-5826.2007.00251.x

 

McGuire, Joan M. Gordon, Michael (Ed); Keiser, Shelby (Ed). (1998). Accommodations in higher education under the Americans with Disabilities Act (ADA): A no-nonsense guide for clinicians, educators, administrators, and lawyers , (pp. 20-45). DeWitt, NY, US: GSI Publications; New York, NY, US: Guilford Press, xx, 236 pp.

 

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

 

Rodgers, B. (2016, March 15). Hidden Disabilities Diagnoses Up But Some Students Remain Unreported At Iowa Colleges, Universities. Retrieved April 07, 2017, from http://iowawatch.org/2015/04/28/hidden-disabilities-diagnoses-up-but-some-students-still-go-unreported-at-iowa-colleges-universities/

 

Rosenthal, I. M., & Rosenthal, S. R. (July). About Crohn’s Disease and Ulcerative Colitis. Retrieved March 21, 2015, from http://www.crohnscolitisfoundation.org/

 

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

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