As the global pandemic hold us captive, I find myself reflecting on the unique individual experience that culminates in shared suffering around covid-19. We’re all struggling through unforeseen challenges amidst these unexpected and uncertain times. The exact nature of those challenges is idiosyncratic, and, of course, intersects with identity. In this post, I’ll share a bit about my frustration, grief, and fear as an academic with a physical disability.
Around the globe, covid-19 has necessitated that companies and schools make accommodations: working from home, recording meetings for those unable to attend in real time, alternative formats of materials. Seemingly overnight, workflows have been revolutionized. The widespread search for adaptation has me thinking a lot about willingness and motivation. Now more than ever we have technological innovations that enable us to consider novel strategies for more flexible working and learning conditions. I’m so incredibly grateful for how rapidly my institution has established infrastructure to enable remote work. At the same time, I want to scream from the rooftops “why did it take so long!?”People with disabilities and caregiving responsibilities have been requesting accommodations like these for years. Those with chronic illnesses have pleaded for flexible attendance policies and the ability to record meetings and classes. I’ve begged instructors and employers to provide me with alternative formats, such as enlarged or digital materials compatible with text-to-speech or voiceover software. Although it is fortunate that advent of the coronavirus has necessitated additional adaptability and flexibility,, I am disappointed these steps are only taken once the able-bodied need them.
Accommodations historically deemed impossible are now widely available. The swift actions taken in the last few weeks confirm many of these accommodations have been feasible all along, there simply hasn’t been sufficient willingness and motivation. Because these requests have historically been made by the disabled, these requests have been seen as “too much:” too costly, too cumbersome, too individualized, too unsustainable. Now that the able-bodied have the same requests, companies and schools are now finding a way. My hope is that the uncomfortable and frustrating experience of learning new ways to live provides empathy for those with disabilities who must make adaptations all day, every day. Living in an able-bodied world as someone who is physically disabled requires creatively adapting and redesigning environments that were not designed for our bodies. My experiences adapting to my changing visual needs have taught me problem-solving, flexibility, patience, and persistence. Covid-19 is forcing the able-bodied to adapt and redesign now too, and I’m hopeful that experience will cultivate greater willingness to brainstorm and implement reasonable accommodations for others.
On the one hand, the shifts to remote work provide much needed and overdue accommodations, on the other, many of these tools and systems are still overlooking accessibility needs. I want to preface the forthcoming diatribe by acknowledging that I am voicing my own suffering, knowing full well that we are all suffering in different ways. My suffering is no better or worse, bigger or smaller, than your or anyone else’s suffering, it is simply my experience. My suffering has taken the form of lack of access and feelings of being unseen. The move to remote systems has required that I learn new software tools and protocols. I’ve been in frequent conversations with other blind academics as we’ve tried to learn these new technologies without sighted assistance. Sadly and unsurprisingly, many of these technologies are not intuitive or compatible with assistive technology. Additionally, during the academic year, I have a sighted assistant through the Disabled Students’ Program who helps me with particularly inaccessible tasks, but I don’t have that assistance now, which means I allocate more of my time to completing less accessible tasks, often leaving me feeling inadequate, frustrated, and exhausted.
Alongside these practical challenges, I’ve also felt the painful isolation of being unseen. When discussing the move to phone-based clinical sessions for my client, one of my clinical supervisors remarked “you couldn’t possibly deliver that type of intervention without being able to see the client!” Ahem, as a blind therapist I can never see the client. And I don’t believe that has made me a failed clinician. Likewise, in meetings and classes, many of my peers and colleagues commiserate about how hard it is not to see people’s faces and body language or experience the joy of mingling at the office. These benign and well-intentioned remarks make me feel isolated because I’ve experienced the difficulty and pain of of being unable to see others’ faces or engage in passive social interaction for a long time. My peers and colleagues validate each other about how unexpectedly challenging these conditions are, and I find myself wanting to shout, “It is hard, right? It’s lonely, isn’t it?” When I’m feeling less bitter, I want to offer how I’ve adapted to these and other obstacles presented by social-distancing, though I recognize that my colleagues are coping with temporary inconvenience, while I am coping with longstanding grief.
I’ve seen some compelling pieces that describe ways in which people with disabilities may be more or less equipped to navigate the challenges of social distancing (e.g. this thoughtful Forbes piece). People with disabilities are accustomed to being socially isolated, often because we’re misunderstood, excluded by design, institutionalized, or neglected. Many of the activities that have been taken away from the able-bodied during social distancing were taken away from me a long time ago. Depending on the disability, we may be more or less accustomed to solitude and isolation, and therefore may have an important perspective to offer about how to cope with lack of access to the external world.
A common thread in conversations about the pandemic is how “most of us” will be fine. I want to take a moment to talk about the “rest of us” who may not be as fine. Those with chronic health conditions and disabilities are often immune-suppressed and at heightened risk. There is now a widespread understanding that the healthcare system will not be able to treat everyone. So who will be chosen to receive care? Those most likely to survive. This means that many with disabilities and chronic illness will be deprived of treatment to preserve others’ lives. I understand that in times of scarcity we must prioritize, and I also want to hold space for the extraordinary pain of being determined by society as dispensable. I feel fear and sadness for my friends and loved ones who fall into this category, as the “rest of us” who are likely to experience diminished access to healthcare, irreversible health consequences, or death as a result of covid-19 are not any less human, any less loved, or any less valuable.
Whether we are part of the “most’ or the “rest,” we are still here, and we have a responsibility to keep living, keep growing, and keep fighting, pandemic and all. This absolutely does not mean that we proceed with normalcy, because nothing about this is normal. The messaging I’ve been receiving from several fellow academics is that this pandemic presents an opportunity to write more papers, analyze more data, and promote our careers (and apparently many grad students are having this experience). I want to challenge the desperate desire for productivity by suggesting an alternative. Hold space for yourselves and your emotions. I have experienced frustration adapting my workflow and fear for my loved one alongside immense gratitude for the joys in my life. I’ve enjoyed connecting with and serving my communities, and am now a fan of virtual yoga classes, book clubs, and coffee dates. I’ve relished in the time and space to connect with my loved ones, albeit in innovative ways. We are suffering, and we are alive. As we experience what it means to be alive during a pandemic, I hope we can also maintain our compassion, flexibility, and patience. We are all in this together, even if we are maintaining 6-feet of distance between one another.
