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Guide

Disability and classroom accommodations for Chiari Malformation

I have Chiari Malformation, here are the disability accommodations and strategies I used in high school and college.

I was diagnosed with Chiari Malformation (also known as Chiari 1 Malformation or Arnold-Chiari Malformation Type 1) after dealing with symptoms for many years and receiving a definitive diagnosis on an MRI. Even before my diagnosis was confirmed, I had been receiving disability and classroom accommodations for Chiari Malformation symptoms through my school IEP and college disability services file, and I’ve continued to update accommodations to reflect how Chiari Malformation impacts my experience while attending in-person classes, as well as in virtual classes and other environments. Here are the disability classroom accommodations and modifications I receive for Chiari Malformation, which for me includes symptoms related to vision loss, light sensitivity, motion sensitivity, and other mobility issues.

Can I get disability accommodations without a diagnosis?

Chiari Malformation symptoms affect individuals in multiple different ways, so there is no specific disability category or universal process for requesting disability accommodations with Chiari Malformation. For example, someone who uses a wheelchair may have different needs than someone who primarily struggles with concentration due to chronic pain. Since Chiari Malformation treatment primarily revolves around symptom management, documentation from a medical professional that provides information about symptoms they have observed and indicating that the individual would benefit from specific accommodations or modifications due to their disability would be sufficient for most contexts, such as submitting documentation for college or requesting a child study team.

In my situation, my “most obvious” Chiari Malformation symptom is visual impairment; I have low vision or vision loss that is not corrected by glasses, and meet the criteria for legal blindness. I had an IEP in high school for receiving accessible large print materials and use a Disability Services file in college, because my low vision diagnosis has been documented even though the exact cause of it was unclear. When I developed additional symptoms attributed to Chiari Malformation such as light sensitivity and difficulties with walking in crowded spaces/across long distances, this information was added to my accommodations list, but I still primarily receive accommodations under the umbrella of visual impairment.

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College housing accommodations for Chiari Malformation

Before I could pick out my dorm freshman year, I had to go through the special housing process and file for disability housing accommodations related to my then-undiagnosed Chiari Malformation and confirmed diagnosis of chronic migraines. Disability housing applications are documented by the Office of Disability Services and then sent to Housing for final approval. Students who use service animals will need to file for disability housing accommodations as well.

In order to get disability housing accommodations, my primary care doctor had to fill out a form certifying my disability and how it impacted my ability to live in a traditional dorm, and also had to make recommendations for what housing accommodations I should receive. This included:

My disability housing accommodations were initially denied as I did not have sufficient documentation of how Chiari Malformation affects me, so my neurologist submitted a second letter to the university that explained the condition in more detail and shared that I was scheduled for an MRI to address a suspected diagnosis of Chiari Malformation. I had my decision appealed about two weeks later and received guaranteed housing for the four years I lived on campus, and kept the same housing accommodations the entire time.

It’s worth noting that students cannot be charged extra for disability housing accommodations- I was charged at the double room rate even though I lived in a single room, because the single was medically necessary.

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Choosing classes and structuring school day for Chiari Malformation

Challenges in high school

In high school, I struggled a lot with managing Chiari Malformation symptoms throughout the school day, because I had classes back-to-back from around 7 in the morning to 2 in the afternoon. I had very little control over my environment and schedule, since I was under bright fluorescent lights, had to navigate busy/crowded hallways, and couldn’t exactly take a break in the middle of the school day to go rest somewhere or stretch my legs. Also, I didn’t really have a say in choosing where my classes were located, who my teachers were, or when I would be working on assignments.

Some strategies that helped me with managing Chiari Malformation in high school included:

Choosing classes in college with Chiari Malformation

Managing my Chiari Malformation symptoms became much easier in college because I could set my own schedule, research where classes were located, and I could also go back to my dorm or to the dining hall between classes; I wasn’t stuck in the same building all day. When it came to structuring the school day for Chiari Malformation during undergrad, some helpful strategies I used included:

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Positioning and seating accommodations for Chiari Malformation

Some people with Chiari Malformation may use mobility aids such as a cane or wheelchair full-time or part-time, while others may experience discomfort or pain from sitting in the same position for a long period of time. Some examples of positioning and seating accommodations I have used in high school and college include:

Preferential seating

With low vision, it’s important for me to sit near the front of the board not only so I can see it, but because leaning over to see the board when someone is blocking it can contribute to neck strain. In college, most people sit in the same general location every week, but my professors in larger lecture settings would reserve a seat for me towards the front during the first few weeks of classes by placing a notecard there. Some students may have a different preference for preferential seating, and can discuss this with their instructor.

Use of a slanted display

I didn’t start using this until college, but I wish I knew about it sooner! A slant board or slanted display positions content at an angle instead of flat on a desk or on a vertical surface like the board or a wall. For students that have chronic pain in the back of their head or that use a lined bifocal, this strategy can be really helpful for both reading and writing. It can also assist with positioning items within a student’s visual field.

Specialty slanted displays and boards can be purchased or created, and low-budget examples can include writing on top of a 3-inch binder, using a tablet stand or writing stand, or similar angled displays.

Permission to take stretch breaks

Some people with Chiari Malformation may experience numbness, tingling sensations, spasms, or other discomfort in their legs after sitting for long periods of time. Taking short stretch breaks during down time in class (like when the instructor is distributing papers) or having break times for all students was helpful for managing this symptom, though I typically wouldn’t go very far outside of the classroom.

Lumbar pillow for class

I noticed that in my computer lab classes that I was frequently moving my back in an uncomfortable position in order to see what was on the board or my screen. Using a portable lumbar pillow that attaches to the back of a chair has been helpful for me both at school and during internships, and it has also helped me maintain a better sitting posture at the computer.

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Light sensitivity modifications for Chiari Malformation

I experience photophobia (sensitivity to bright lights) and photosensitivity (sensitivity to flickering, strobe, or flashing lights) as the result of Chiari Malformation, and use the term modifications instead of accommodations because I often have to change how I access certain environments or content as a result. I list more specific accommodations in “How I Talk To Professors About Photosensitivity”, but some Chiari-specific accommodations include:

Permission to wear tinted glasses at all times

I wear non-polarized tinted glasses to help with managing photophobia, and I had to request a specific disability accommodation to wear them after I was turned away from taking a virtual exam by the proctor, since they couldn’t see my eyes behind the tint. After talking to Disability Services, I received an accommodation to wear my tinted prescription glasses at all times, and use an alternative proctoring software when needed.

Content warnings for strobe, flickering or flashing lights

Movies or videos that contain strobe lights, flickering animations, or flashing animations can be a migraine trigger or painful to look at. Some flashing content may also be from a not-so-obvious source; for example, a digital model in one of my classes had a strobe-like animation when the reproduction rate was increased, which led to me getting disoriented during class and needing assistance to get back to my dorm. Because of this, I ask my instructors if there is any flashing content that they know of in any class materials, and if they aren’t sure, I will ask if I can have the link to the video so someone can screen it for me or I can watch it later, and will step out of the room while it is being played.

It’s very rare that a graded assignment will require a student to observe strobe or flashing lights, but it has happened to me a few times, even in data science and assistive technology courses. In those situations I ask the professor if I could be exempt for medical reasons and complete an alternative assignment, and they have always said yes.

Transcripts for video content

If I have to miss watching something because of flickering or flashing animations, it helps to have a video transcript so I can read through the content that is being shared. This is also beneficial for videos that have spinning or lots of motion, which can trigger vertigo or dizziness.

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Notetaking and assignment accommodations for Chiari Malformation

Some people with Chiari Malformation experience brain fog due to chronic pain, difficulty with taking notes, or other processing issues. This can extend to notetaking accommodations or modifications to how assignments are presented, which include:

Copies of notes/items presented on the board

My instructors would share copies of presentations, items that are presented on the board, and similar documents with me via email or by posting them on the course website. I would take my own notes during class or video lectures and use these as a supplement to ensure I copied information correctly.

Use of a tablet for assignments/digital formats

I prefer to read longer passages of text or complete tests on my iPad instead of a computer because I can hold the screen at a comfortable angle under my glasses and complete assignments while lying down or in a more flexible position. I had to request a separate accommodation for using my iPad during tests, which is referred to as Guided Access.

Extended time for assignments

If I think I will need extended time for something, I tell the professor within 24 hours of when I first receive the assignment, and have 150% extended time to complete it. For example, if an assignment is due in 2 days, I have 3 days to complete it without penalty. This is helpful if I am having a flare and can’t sit at my computer for long periods of time, or if I have an appointment or treatment coming up that I will need time to recover from.

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Exams and testing accommodations for Chiari Malformation

Since I have a Disability Services file, I can take exams, quizzes, and other timed assignments in the Disability Services Testing Center. My testing accommodations closely resemble the accommodations that I receive in the classroom, including:

When provided with the option, I would also take exams or tests using my own personal computer at home or in my dorm, because I could control the lighting in my own space, use my comfortable desk chair, and use my own personal keyboard for typing.

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Miscellaneous accommodations for Chiari Malformation

Other miscellaneous accommodations I have received for Chiari Malformation include:

Access to on-campus disability transportation services

Disability transportation services allow for students and staff with documented short term or long-term disabilities to have access to door-to-door transportation between their dorm and other buildings on campus as needed. The exact method of transportation varies between colleges, and my college used golf carts to transport students at scheduled drop-off/pick-up times. In many cases, the same doctor’s note that is used to certify accommodations for Disability Services can be used for getting disability transportation services.

Accessible print materials

Factors such as double and blurry vision, difficulty positioning the head close to a screen/page, and light sensitivity can all play a role in making standard print more difficult to read for people with Chiari Malformation. Strategies such as increasing line spacing, larger font sizes, and simplified reading displays can all play a role in improving the reading experience. I share more about this topic in “How I Explain My Brain With Chiari Malformation” below.

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Additional resources for disability and classroom accommodations for Chiari Malformation

By Veronica Lewis/Veronica With Four Eyes, www.veroniiiica.com

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