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By Rebecca Traldi, University of Maryland-College Park


"So, will this condition affect you for the rest of your life?" The coordinator of the Adaptive Technology Lab looks kindly at me from 6 feet away. It's the first in-person meeting I've had at the University of Maryland since COVID lockdown in 2020. I’m visiting the lab to see the services they offer to students.

In my mind, I think back to dozens of medical tests, waking up with searing pain, crying at the hospital...I shrug and reply, "I don’t know."


 

My first injury was in 2018. I was at work, and I started experiencing severe burning pain and cramping down my entire back, particularly in my right shoulder. After I started my PhD program that year, my condition worsened, despite ongoing physical therapy. Because my condition is “rare,” it wasn’t until 2021 that I received a diagnosis, despite seeing over a dozen specialists since my initial injury. My symptoms worsen with any typing or mouse use, and have a repetitive strain component.


Attaining my diagnosis was like solving a mystery. One major difficulty I had was a lack of answers for why and what was happening. When I first investigated disability accommodations through my university’s Accessibility and Disability Services (ADS) office in 2019, just the thought of selecting a medical provider to complete the required forms felt overwhelming. I had many providers who each dealt with different aspects of my symptoms. I didn’t go back to ADS until 2021, after sustaining another injury – and even then, I was labeled a “special case” since my condition is rare and not well understood. This meant I needed to work harder to advocate for my access needs.


Although dealing with a newfound disability while working towards my PhD has been the most challenging journey of my life, I have learned a great deal about navigating the healthcare system and advocating for myself. Below, I've distilled five key lessons that I've learned in academia, in the hopes that they may help others experiencing similar issues, whether related to repetitive strain or other types of chronic injury or illness.


Ultimately, academic institutions also need to do more to protect students and employees from injuries, and accommodate them when injuries do occur. Specifically, this should include training and equipment to facilitate proper workstation ergonomics, fostering open communication, setting expectations for sustainable workloads, promoting health work/life balances to avoid burnout, and removing barriers to attaining disability accommodations.


1. Know your rights.

Read up on the Americans with Disabilities Act and learn about your rights. You may receive pushback, so make sure to use resources like the Job Accommodation Network (JAN) which can help you secure legal consultation if your accommodations are denied. Remember: If you meet the criteria outlined in the ADA, you are entitled to reasonable accommodations to enable you to complete your job. Knowing your rights is critical to advocate for yourself.


2. Request accommodations as early as possible.

If you are dealing with a new health condition, doctors may hesitate to grant a diagnosis until they’ve ruled out all other possibilities. In my case, I experienced something I call “diagnosis of exclusion” bingo. Most imaging and labs were "normal,” and physical therapy did not solve the problem. This dissuaded me from requesting accessibility/disability accommodations, because I didn't feel that I had a clear explanation for what was happening with my body.

Securing accommodations is stressful and challenging, which also dissuaded me from applying. In hindsight, I should have requested accommodations much earlier - perhaps two years earlier than I did. Instead of fighting for accommodations, I found ways to accommodate myself informally, which meant giving up on funding opportunities. I dropped out of the Teaching Assistant pool because I couldn't complete the computer work required for the position. I felt compelled to make these sacrifices, and to limit my opportunities for support, because I didn’t feel I could secure formal accommodations.

I’m here to remind you that there is absolutely nothing wrong with requesting accommodations. You are not required to make additional sacrifices to accommodate yourself. If you need support or ideas in generating work-related accommodations, the Job Accommodation Network is a great resource, with lists of typical accommodations as well as templates for making the request. I decided to ask my physical therapist for support with the accommodations paperwork, since she was most familiar with my condition, symptoms, endurance, etc. When I had my first interview to request accommodations, I wrote out a script, and practiced describing my symptoms and functioning. Although there are significant barriers to attaining accommodations, in my case, receiving them is enabling me to finish my dissertation – which I will defend soon.


3. Draw on your support system.

Any chronic pain, injury, or illness is incredibly draining. Tending to your own medical appointments and needs is essentially a full-time job. Newly disabled individuals also have to cope with internalized ableism, and the resulting emotions of guilt, shame, and loss that come with changes in how your body functions. I had a strong support system including my partner, family, close friends, and my medical team. Several support groups that I found - including Facebook groups specific to my condition and the DAC - were also critical.

There may also be free resources through your institution to help you navigate your condition. For example, I received eight sessions of free therapy at the University of Maryland, as well as a free 8-week therapy program and nurse case management through my insurance provider, which helped me work through some of the challenges that come with a new medical diagnosis.


4. Research innovations that can help you adapt to your new circumstances.

It wasn't until three years into my struggles that one of my medical providers recommended that I use dictation software. The nurse winced when she heard I was a PhD student who worked long hours at the computer. She said something like, "What you need is Dragon. We all use it here. There's no way we'd be able to type out all of our patient notes otherwise."

I had already tried a full ergonomic desk setup, but those changes were not enough to enable me to work. I benefited from accessible technology information and tools shared by others in academia and some of my support groups. I ended up trialing free dictation through Lipsurfer, Google, and Microsoft Word; Android voice-to-text features; Dragon dictation; and higher-tech accessories (microphones, foot pedals, external trackpad, motorized standing desk, etc.). I secured a small amount of grant funding through my university to help defray equipment costs. I was also lucky to identify a friend and colleague to serve as a coding partner for one of my dissertation chapters, which could also be put forth as an accommodation request.


5. Set and maintain your boundaries.

Setting and maintaining healthy boundaries is an enormous challenge for many academics, particularly PhD students, who are often called upon to be “workhorses” and equate their value with their productivity. Personally, I struggle with boundaries, historically putting my work first and my personal well-being second.


My lack of boundaries led me to overwork and made me more susceptible to re-injury and other long-term health effects. Therapy, open communication, and mindfulness have helped me overcome some of the challenges of boundary setting, which will likely be a lifelong process for me. Importantly, these tools complement, but do not replace, ongoing medical treatment for my physical condition. Reducing or eliminating hours worked on weekends or during flare-ups has been important in my boundary setting process - and while it can be difficult to say no to short-term opportunities, I recognize that setting healthy boundaries will enable me to be more productive in the long-term and reduce my injuries.


 

It is unfortunate that repetitive stress injuries are not more openly discussed in academic institutions. Most academic work is computer-intensive, particularly for PhD students focused on writing, coding, etc. for 6 or 7 days a week. PhD students may also struggle to secure medical care, as PhD salaries are incredibly low and benefits for PhD students are often on par with undergraduate benefits. Many PhD students move either nationally or internationally to complete their programs and are distanced from friends and family, which can cause additional challenges. Students are also expected to work without taking leave or breaks throughout the year, which offers little time for resting and healing. Finally, the COVID-19 lockdown led many academics to work long hours in less-than ideal home “office” situations, without the typical pauses for social interaction or coffee break conversations that might arise in campus settings. Recent data illustrates that this had demonstrable negative impacts on student health.

In addition to other critical efforts in diversity, inclusion and accessibility, I strongly advocate for academic departments to find ways to more proactively integrate adaptive technology into everyday work modalities. Departments should also promote freely available tools for proper office ergonomics. Moreover, departments should hold open conversations on work pacing and burn out. We need to prioritize new goals that support sustainable workloads and sustainable pacing in academia at large. These interventions will reduce the chance of repetitive strain and other work-related injuries. It’s important that we acknowledge these issues and predict these problems rather than dealing with them only after injuries occur. Openly supporting and learning from academics with disabilities through appropriate accommodations, inclusivity, and collaboration is also vital.


 

Rebecca Traldi is a PhD Candidate and environmental social scientist at the University of Maryland’s Department of Geographical Sciences. She can be found on Twitter and LinkedIn.


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  • disabledacademicco

Updated: Jun 8


By Cait S. Kirby, Vanderbilt University and Ada Hubrig, Sam Houston State University

In the wake of the COVID-19 global pandemic, on March 18th, 2020, the University of Washington announced they would move all teaching online to prevent transmission of the virus. In response to this and a handful of other announcements, disability activist @kateandcrps created the hashtag #AccessibilityForAbleds, and asked, “Why is this so hard [providing accommodations] when disabled people need this to participate in society?” As the number of universities moving to online instruction ballooned, disability activist @Imani_Barbarin started the hashtag #DisabledAndSaltyAF, and explained, “A lot of the things disabled people have long demanded have instantly manifested now that nondisabled people need them too.”

This is not a critique of employing social distancing measures, which immunocompromised disability advocate Zipporah Arielle reminds us are necessary to protect the most vulnerable among us. In fact, we acknowledge and appreciate the extraordinary labor undertaken by our colleagues as they plan for a pandemic and work diligently to curtail the spread of COVID-19. The authors—both graduate students: one chronically ill, the other multiply disabledhave fought for academic accommodations for ourselves and others. We have frequently found strong opposition to and often denial of accommodations such as telecommuting, online instruction, access to computers in class, and other avenues for remote participation. Students with suppressed or otherwise compromised immune systems, chronic pain, mobility impairments, or fatigue often benefit from relaxed attendance policies and the ability to work from home or utilize remote instruction. Individuals with chronic pain, trauma, and anxiety often thrive in environments that they can control, such as their homes. Students with a variety of processing disorders, visual impairments, and physical disabilities benefit from access to a computer for notetaking. These accommodations benefit disabled students and emphasize the health and success of the students, foremost. It is important to remember that students are legally entitled to these accommodations. Without these accommodations, disabled students are not able to participate and receive a subpar education experience as compared to their abled peers. Unfortunately, all too often these accommodations are denied with the excuse that they are “too difficult” or “not reasonable.”

We have found that some faculty distrust disabled students and construct policies around this distrust. The practice of requiring a doctor’s note to excuse an absence suggests that faculty expect that students will fake illnesses to avoid attending class. In fact, just last year a faculty member intimated to one of the authors that he suspected students are cheating on the tests that determine whether they receive extra time on exams. In the classes he taught and continues to teach, he holds power over disabled students who need and deserve accommodations. Additionally, the practices that attempt to weed out so-called “disability fakers” preclude disabled students from receiving accommodations due to financial and accessibility issues.

Importantly, in the wake of COVID-19, these very accommodationstelecommuting, access to computers, and relaxed attendance policiesare now being offered to and required of all undergraduate students and, increasingly, more graduate students, postdocs, staff, and faculty. The accommodations that were once impossible for a single student have suddenly become standard for entire campuses. The costly, time-consuming, and confusing process of acquiring these accommodations has been alleviated and, at the same time, new barriers have been erected. Below is a brief list of said barriers:

Online instruction requires an internet connection and a computer, tablet, or phone, which are not as ubiquitous as they may seem. Poor students without access to the internet will be forced into public spaces, risking their own health.

Some assistive technologies, such as text-readers, are only available to students in computer labs, leaving disabled students without access to necessary learning tools.

Since student participation may not be visible when using ad-hoc online instruction, it can be stressful for d/Deaf and HoH individuals, stutterers, and students with anxiety disorders.

Moving to remote instruction while displacing students results in confusion, homelessness, and visa problems for international, housing insecure, and poor students. The traumas of being displaced and relocated will likely not be accommodated.

Isolation may exacerbate existing mental health struggles, which will likely not be accommodated, especially if instructors cannot see that the student is struggling. Students who receive mental health services on campus may also lose these supports.

Graduate students have been encouraged or demanded to remain in labs until the moment the universities close their doors. In fact, @ConfusedPhD describes being told by their PI to continue coming to work, even while there was no time-sensitive work to be done in the lab.

Further, graduate students with teaching or teaching assistant responsibilities are required to move their class online and continue scholarly activities. The burden on graduate students to move their courses online while continuing to pursue research is enormous and will likely cause some students to fall behind their peers and/or overwork themselves.

Contingent faculty members who are often already unfairly compensated for their labor are asked to take on extra work in the shift to online instruction.

Early-career scholars who will soon begin tenure review and postdoctoral scholars with a short time to demonstrate productivity are expected to continue doing research.

Finally, hourly staff, such as housekeepers, dining, and custodial staff, may be facing lay-offs or reduced hours. On the other hand, in some cases these workers are being overworked, such as when students are ushered off campus, and are given no protective gear or training.

We know universities are being forced to act quickly, but not considering these vulnerable populations puts themand in doing so, all of usat greater risk.

It is not lost on us that accommodations became widespread only once they were required by non-disabled people to protect their own health. We accept the precedent that the current unfortunate crisis provides and have documented the accommodations from across the United States in a digital paper trail archiving these announcements. It is our hope that institutions of higher education learn a great deal about the benefits and limitations of accommodations from this scenario. We further implore that they adopt procedures to mitigate the challenges that an unplanned move to remote learning is currently creating for specific populations and also adopt procedures in the future to provide accommodations more readily.

As disability advocates point out, accommodations are frequently denied disabled students, staff, and faculty when they request them. As both Washington University’s and Stanford University’s announcement proclaimed: “Departments and faculty are asked to put student health and success first in all decision making.” We applaud these efforts and absolutely agree student health (and relatedly success) should be prioritized. But like other advocates for disabled students, we insist that these accommodation measures for students to promote their health and success be better distributed to disabled students, staff, and faculty even when there is not a global pandemic. As we plan for social distancing, we must consider how to support those who are at greater risk with fewer resources.

Ada Hubrig (@AdamHubrig) is a multiply disabled caretaker of cats. Their research on community literacy and disability has appeared in College Composition and Communication, Reflections, Community Literacy Journal, The Journal of Multimodal Rhetoric, and his words have also found homes in Brevity, Typehouse Magazine, and The Lincoln Underground. They currently reside in Huntsville, Texas, where they are an Assistant Professor of English at Sam Houston State University.

Cait S. Kirby (@caitskirby) is a chronically ill scientist, teacher, learner, and PhD Candidate at Vanderbilt University. In lab, she studies how mitochondrial DNA copy number is regulated in the model system C. elegans. In her spare time, she explores disabled graduate student experiences, particularly around belonging and mentorship. She makes resources for teachers and students, which are available on her website.

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By Mark Bookman


As a wheelchair user, I always try to anticipate barriers to accessibility before traveling abroad. In practical terms, this means researching my destination ahead of time to discern if there are any stairs, closed-off spaces, or potential pitfalls (either literal or metaphorical). However, despite my best efforts, there are ultimately some barriers that I cannot predict. Perhaps the taxi from the airport is unable to accommodate my particular brand of wheelchair. Or maybe my hotel room is a bit farther than I would like from the nearest convenience store. Such barriers are normally inconvenient, but not insurmountable. I’ll find another way from the airport to my destination or make do without a convenience store for a couple of days. But I can only think of so many temporary fixes, and at the end of the day they are temporary. What if I’m in the situation where my stay is longer than a few days? What if I find myself visiting more places, doing more things, and having to anticipate more barriers than I would otherwise? This is one of the issues that sets apart studying abroad from other kinds of travel.


In this blog post, I draw on my personal and professional experiences working as a visiting researcher at four Japanese universities over the last ten years to call attention to some of the barriers that people with disabilities face when studying abroad. I’ll also explain how I overcame those barriers and offer a model for (self)advocacy and problem solving that may help other students in the future. My intention is to invite conversation about different kinds of strategies for navigating barriers to accessibility not only in the Japanese academy but in institutions of higher education across the world.


Now, without further ado, let me begin by describing my experience at Waseda University back in 2008. When I studied at Waseda, I was still able to walk, albeit with a limp. I stayed with a host family, and while I didn’t have much difficulty navigating their home, moving around outside was a different story. I spoke next to no Japanese and had a hard time making friends. Indeed, I definitely could not explain the nature of my disability to those who asked, and I became increasingly frustrated due to the language barrier. How I yearned to tell my peers why I couldn’t stay out in the heat for too long or how their offers to carry me upstairs made me feel uncomfortable. Instead, I simply succumbed to the pressure of the situation and let everyone around me do as they liked. It was an incredibly unhealthy lifestyle, and one that I now know to avoid. But how did I survive at that time? Certainly, I did my best to study Japanese. But learning a foreign language was a time-consuming process that I couldn’t rely upon for quick and easy answers. Eventually, I found another solution in prerecorded messages. After describing the situation to my English-speaking host-mother, she wrote up a series of flash cards that explained my condition to my peers. Usually, it only took them a minute or two to catch on to what I was saying, at which point they’d let me take the lead and decide where we’d go next. A bit of forethought about translating my disability was enough to enable my social participation.


My situation had changed by my second study abroad experience at Sophia University in 2012; I had started to use an electric wheelchair to get around town. Although I’d had an additional few years of Japanese training, I was still nowhere near the level needed to convey critical information about my disability. I was also in a completely different living situation. I’d moved into an all Japanese dorm with fifty guys who primarily spoke Japanese, and while I received general support from the study abroad office on campus, I didn’t have anyone to prepare flashcards for me on a daily basis or explain my situation to random people I met on the street. So, I had to find another way to advocate for myself. Self-advocacy became particularly important inside of the classroom, when I had to explain to my peers and teachers why I was unable to handwrite kanji and participate in group assignments. My solution here was to come prepared and devote extra time to all academic tasks. By building an extra fifteen minutes into my schedule before and after classes, I made sure that I had time to struggle through conversations about my needs with my instructors. Nothing was guaranteed, but I found that most of my teachers were willing to listen to me if I took the time to explain why they should.


My third study abroad experience at Toyo University in 2014 was remarkable in many respects. For the first time, I was in charge of taking care of all accommodations for myself, including living arrangements and academic affiliation. I learned exactly how difficult it can be to find a permanent address, investigating upwards of 250,000 apartments online (and 40 in person) before finding one that could work – but my problems didn’t end there. While my Japanese was finally good enough to convey information about my disability to those around me, I was still unable to access many of the spaces I needed to go. I was studying Buddhist philosophy, so visiting a number of temples and shrines was a must for completing my fieldwork. Alas, it was all but impossible for me to do so because many religious sites had stairs and other architectural barriers. Rather than abandon my research and resign myself to despair, I decided to embrace each barrier I encountered as a teaching moment. How could I reframe my struggles to help others create an inclusive society? By taking this question to heart, I simultaneously empowered myself and found a new way forward.


I am currently in the middle of my fourth study abroad trip to Japan at the University of Tokyo. My physical needs are quite different this time around then they were over the last few excursions: I rely on attendants for assistance, and spaces that used to be accessible for me are no longer usable. But I have learned several new survival strategies over the last few years that make my life easier. For one thing, I communicate frequently with my professors and peers at school. Constant contact allows me to share my frustrations with my friends, who help me brainstorm solutions to barriers. Indeed, my friends have become indispensable allies on my quest for creating an accessible world. Another trick that I’ve come to appreciate is relying on regional knowledge networks. My school does not know everything about living and working with a disability in Japan. How could they? Their jurisdiction applies to campus spaces only, which rarely extend beyond classrooms and dorms, let alone trains, shopping malls, restaurants, and other spaces that I visit each day. To find out information about non-academic spaces that still play a role in my academic life, I routinely turn to local organizations like independent living centers and disability advocacy groups for support. Paired with campus resources, the advice of those organizations is enough to sustain my success.


There are many more things I can say about my study abroad experiences in Japan. For now, I’ll condense what I’ve written above into five main takeaways: (1) translate information about your disability ahead of time; (2) devote extra time for identifying/explaining accommodations; (3) think about barriers as learning opportunities rather than roadblocks; (4) maintain constant contact with your peers to brainstorm solutions to challenges; and (5) look to local knowledge networks for answers about aspects of daily life that may not be covered by your university’s resource center.


What have you learned from your study abroad experience? Are there any strategies that you found particularly effective? If so, what are they, and why did they work? Let us know in the comments!


*Note: This post was adapted from a blog entry on AccessibleJapan.com (with permission).


Author Bio: Mark Bookman (he/him) is a Ph.D. Candidate at the University of Pennsylvania. His research explores the historical contingencies that have allowed some impaired individuals to dictate how members of the public have understood constructions of disability in Japan over the last 150 years. Mark also works as a policy consultant for the Japanese government and United Nations on issues like inclusive education, accessible transit, and disaster response.


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