Lindsay Burris and Haya Bacharouch
Lindsay is an Ed.M. student at the Harvard Graduate School of Education participating in the Mind, Brain, and Education program. Before enrolling in graduate school, Lindsay spent seven years as an elementary special education teacher. In this role, she developed a passion for advocacy and celebrating neurodiversity. As elementary and secondary schools across the nation continue to wrestle with ways to better support students with disabilities, she hopes that higher education can lead the nation in empathetic conversation and inclusive practices.
Haya Bacharouch is a master’s candidate at the Harvard Graduate School of Education. She is receiving a degree in Education Policy and Management. Prior to entering her program at HGSE, she was a teacher. Being in the classroom, she recognizes the need for an inclusive education, and adopted the UDL framework in her classroom to better meet the needs of all students. She is passionate about being part of the IHED organization because she believes that inclusive education for all students, particularly students in higher education institutions, is critical to helping all students succeed and learn.
In teacher preparation programs across the United States, pre-service educators are taught the importance of inclusive education and disability rights. In law-abiding districts, providing appropriate accommodations to students with different learning needs is considered a crucial responsibility – not simply an optional action. Knowing that inclusive mindsets and practices continue to progress in the nation’s public-school districts, both authors were surprised to see variable responses to more invisible forms of disability in the higher education setting. In discussions with peers that access disability services, the authors heard that invisible forms of disability felt less accepted than those of a more visible nature. Respondents noted that their peers often get caught up in the normative way of doing things and forget about the beauty of diversity until there is an optical reminder.
These responses often stem from a lack of awareness and understanding. Feeling silenced by the stigma associated with needing medical or learning accommodations hinders many people with disabilities from sharing their story. The power of a story is that it transposes listeners into a new time and space - one where they can briefly situate themselves in the perspective of the storyteller.
In the initial phases of writing this piece, the authors discussed ways to raise awareness around this sensitive topic. They wanted to elevate student voice surrounding the need for and response to accommodations on college campuses. Narratives from current students felt like an ideal way to begin the conversation and help communities better understand the needs of those with invisible disabilities. In the sections that follow, you’ll read anonymous* stories from four graduate students with disabilities. These stories were initially collected through an online survey where participants could elect to elaborate on their responses in a personal interview. We hope their stories spark increased understanding and lead to more respectful conversations surrounding accommodations in higher education.
Juno*
Juno has found it frustrating and disappointing to discuss her medical condition during her time as a graduate student. Juno’s anxiety began in her transition to graduate school. She discussed that it was extremely challenging to receive accommodations. She was bounced around between three different people meaning that she had to tell her story not once, not twice, but three different times before she finally received proper accommodations for her medical condition. Juno reported that navigating Access and Disability Services has been easier than navigating her university’s mental health department. For many students with anxiety, access to a supportive therapist that understands the demands of graduate school is integral for academic success.
After finally receiving the appropriate medical documentation for her diagnosis, Juno received accommodations for her classes. Her accommodations included extensions on deadlines because she has difficulty meeting overlapping due dates that usually result in compounding anxiety.
Throughout Juno’s survey responses, she made it clear that her medical condition of anxiety is highly stigmatized making her feel uncomfortable disclosing to her peers that she has accommodations for anxiety. She writes, “...[anxiety] is misunderstood as something that everyone has to a certain extent. It’s a very invisible mental health issue that is isolating in that respect.”
Marcus*
Marcus is a current master’s student with a diagnosis of Attention-Deficit/Hyperactivity Disorder (ADHD) and dyslexia. He participated in special education programming until 9th-grade before transitioning to a 504-plan his junior year. He states that his current accommodations include having a class notetaker, using assistive technology to draft written documents, extended time on assignments and tests, and taking tests in a private location.
Marcus said that accessing disability services at the master’s level has been a much more positive experience then what he experienced during his high school and undergraduate years. He felt like it was a constant battle to get appropriate accommodations when he was in high school, and navigating disability services during his undergraduate studies was a very public experience. He had to hand-deliver a disability services letter to each professor, and leaving the room to take assessments was a public affair. Consequently, the responses from peers were often negative, and he felt misunderstood. At the master’s level, his confidentiality is better protected, and his professors respect his need for accommodations. “I really appreciate this level of respect,” said Marcus, “because my professors normalize disability, respect my intellectual contributions to the learning environment, and give me the power to decide if and how I tell my classmates about my disability.”
Leah*
As a current master’s student, Leah accesses disability services for a chronic digestive disorder. Not being diagnosed until after completing her bachelor’s degree, Leah navigated disability services for the first time when enrolling in graduate school. She noted that accessing these services was pretty easy, but it took a long time to gather all of the paperwork and put a plan in place. Her current accommodations include excused absences from class, extensions on assignments, and accessing a class notetaker. When asked to describe how these accommodations help, Leah said, “In addition to abdominal pain, excessive fatigue is also really common, so my accommodations make it easier for me to focus in class.”
While most professors have responded positively to Leah’s need for accommodations, she wishes that accommodations offered more autonomy. For example, the school opted to give Leah use of a notetaker rather than recording lectures because some professors dislike having their lectures videotaped. She went on to explain that notetakers can sometimes be difficult: “…it takes the university a really long time to hire notetakers. The quality of note-taking varies, too. When other people take notes for me, I have to rely on what they think is important. If professors are willing to record the lectures, then I get to decide what is important.” Leah concluded her reflection by noting how much she appreciates professors that implement the UDL (Universal Design for Learning) approach because their classes are naturally accessible for all students. This helps Leah to blend in; she doesn’t need to ask for anything not available to other students.
Omar*
Omar is a current master’s student and has had access to accommodations since his undergraduate career. Since Omar has already gone through four years of college with proper accommodations, he has been better able to manage and navigate his way through graduate school. Omar is diagnosed with a condition that affects his autonomic nervous system, which regulates the function of the body’s internal organs, such as heart rate, blood pressure, digestion, and body temperature. Autonomic disorders can result in unstable blood pressure, dizziness, fainting, lightheadedness, and other symptoms that can hinder his attendance and ability to focus in class. Omar’s current accommodations include flexibility with the attendance policy, as sometimes he may need to miss a part or the whole class depending on the symptoms during that specific time. Omar also has access to a note-taker for when he misses class.
Like other students, Omar has expressed that professors are highly responsive and accommodating. However, Omar discussed that although his classmates are friendly and supportive, there is a lack of understanding when it comes to his diagnosis. Omar revealed that most of his classmates assume that he has a cold or virus when he’s not feeling well, and some suggest that he should go home to rest. Omar writes, “...it’s hard to explain that I’ve chosen to be in class, that I won’t make them sick, and that I’ll only leave if I choose to, especially while trying to concentrate in class.” Omar’s narrative is similar to those of the students who responded to our survey and who we have talked to personally, which reminds us that it’s important to be cognizant of the fact that not all disabilities are visible.
Our narratives only capture the experiences of a few students, yet numerous untold stories exist in colleges and universities across the nation. Despite this, the stories presented in this article show a common theme: invisible disabilities are often not believed, understood, and appropriately accommodated. Those with invisible disabilities are confronted with disbelief by their friends and colleagues who cannot visibly see the impairment, and associated stigmas make it difficult for people living with invisible disabilities to feel accepted in professional settings. Thankfully, professors and students can take intentional steps to improve the community culture in higher education:
Students:
- We’ve all done this at some point, but it’s important to not assume what your peers are going through. Reach out and have a conversation. Understand the nature of the disability and dispel the myths that exist.
- Understand that accommodations are not “unfair advantages.” Instead, they help students with disabilities fairly access the learning environment. If you find out that one of your peers uses accommodations, exercise sensitivity.
- If a classmate or friend tells you about their invisible disability, refrain from telling others.
Professors:
- Start off your semester by letting all students know that they can talk to you about their specific needs and the best way to accommodate them. This can be done through a survey handed out during the first week of class.
- Embrace Universal Design for Learning.
- Students may not always approach you. If this is the case, approach the student and ask whether or not the adjustments are sufficient, and let the student know that you’re available for support.
Many people carry an invisible disability that heavily impacts their life on a daily basis. Some examples include chronic pain, mental illness, or autoimmune diseases. It’s time that we have more open and honest conversations around the topic of invisible disabilities. It’s time for those in higher education to lead the nation in disability awareness and acceptance.
*Pseudonyms were used to ensure anonymity.