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.