There has never been a moment in my life like the current global public health crisis. Although I was born in a country during a long-running armed struggle for independence, in which countless lives and livelihoods were both destroyed and under constant threat, I have never witnessed anything like what the novel coronavirus has caused in my time in America. It stole our collective sense of normalcy, upending so many facets of life, with some of its most severe effects being the quarantine of whole cities and states and the devastating loss of economic security. Besides the enormous human cost of this outbreak, much of our social and economic activities ground to a virtual halt.
Meanwhile, we sail through a sea of great uncertainty, trying to stay afloat as one powerful wave after another slams us, seeking to frighten us and testing our collective mettle to get through the storm and onto firmer ground. But there’s something else that this cataclysm is both amplifying and exacerbating the ongoing struggles of one of society’s most disadvantaged and vulnerable communities: people with disabilities, particularly those with combined vision and hearing disability and multiple disabilities.
One of the major manifestations of the epidemic is the practice of social distancing. This kind of pandemic response requires that people keep a distance of at least six feet from each other. For those who need to be able to communicate — or do virtually everything else during their waking days — through touch, this makes no practical sense. Indeed, when I go out to a grocery store, about the only way for workers to interact with me is to approach me in order to initiate the communication process. A grocery worker (or any worker for that matter) will typically tap me on the shoulder or hand to inform me of his or her presence and availability to assist. Some workers even employ a print-on-palm communication mode for basic information such as the cost of an item, quantity, or its availability, with or without gloves on. Most of the time, however, workers have to use my personal iPhone and Braille display. Even if there is a plexiglass shield or other physical barrier between me and the worker that’s meant to protect workers and customers, the employee usually comes from behind the cash register or counter — or someone else, such as another customer or employee, acts as a conduit of communication standing right next to me.
In addition to the challenge of being able to communicate with others, following visual or auditory signals will inevitably bring someone who is deafblind into close contact with a stranger. This has generally been the case at large establishments such as a supermarket or a bank. On several occasions, I went to my local Safeway store and, while waiting in a long line that snaked through the aisle, an employee kept gently pushing me back into a marked spot. People have to stand six feet apart, so there were markings on the floor that I didn’t register as they were not tactile.
Furthermore, some places limit the number of people who can enter at once using posted signs. Consequently, I have been stopped numerous times by security personnel. There were at least three instances at a local bank branch in which I was led back outside and told to wait for my turn. For the most part, though, people who recognize me and my guide dog will generally put social distancing aside and approach and readily communicate, allowing business transactions to proceed as they normally did prior to the outbreak. To the extent that it is currently being practiced, social distancing is a luxury deafblind people certainly cannot afford; the alternative would be the unequal treatment of such individuals on the basis of disability.
A second consequence of the whole pandemic response is social isolation. To mitigate the spread of the virus, people must isolate themselves. But isolation extends to those who do not have COVID-19, the respiratory illness caused by the virus, because of enforceable stay-at-home orders. Predictably, after a while people began to feel its adverse effects, leading to growing discontent, with some protesting around state capitals even though the restrictions are meant to save lives. But for many disabled people, isolation is a fact of daily life, whether in normal times or during an acute crisis: societal barriers, perpetuated by the continuing indifference to them of national policymakers and the corporate community, create pressures on disabled people to isolate. If they protest, which they have been doing for decades, they are dismissed as a community of whiners. Yet, those in the general population who took for granted their freedom of movement before the current crisis suddenly find themselves confronting a dreadful reality, one in which public health experts warn can lead to dire health consequences. Disability itself isn’t the cause of isolation; rather, the unavailability of resources to disabled people and the lack of commitment on the part of society broadly to accessibility are responsible for isolation.
The sudden onset of COVID-19 and the resulting government response to it have led to a chaotic scramble by individuals and organizations to adapt quickly to a new landscape of uncertainty. All of my work-related travel plans were canceled, with businesses and their customers going virtual via Zoom and other work-from-home solutions. For many people, this dramatic transformation caused palpable stress, forcing them to rapidly adjust to keep up with the fast evolving pandemic situation. A new kind of normal thus emerged, with many technologies and services stepping up to meet the challenges of the moment.
But for me and many other deafblind people, constantly adapting to new situations, especially where accessibility isn’t priorized, is something that occurs on a daily basis, whether there is an ongoing major disaster or disease epidemic or not. Almost all of the solutions that have been offered up to the population at large didn’t take into consideration the unique needs of deafblind people. I have to engage in day-to-day negotiations with the outside world not only to accomplish fundamental tasks like getting food or medical care, but to participate in public life. While I am able to shop or fulfill other tasks online at certain places that have improved accessibility, many others require considerable patience or simply don’t work. And although those who are deaf are able to receive the services of a sign language interpreter through video conferencing solutions, my best option involves receiving typed responses via Zoom; even this option is tedious at best, as it has poor support for Braille-based products. What this turbulent period highlighted, however, are not novel challenges for my community; instead, the virus exposed what has been going on for decades: the transformation of society by technology largely left out deafblind people, pushing them to find alternative yet ineffective and inefficient remedies — or, as is often the case, forgo the opportunities and privileges of contemporary American life.
For all its terrible effects on humanity, not everything about the coronavirus is negative. It reminds us not to take anything in life for granted and to always prepare for life’s storms. It forces us to engage in self-reflection, and to experience other people’s worlds. It does not discriminate and knows no bounds; instead, it magnifies the consequences of society’s own neglect of and discrimination against many segments of the population at large. By disrupting our daiy routines, the pandemic tells us that there will be a time to slow down so that we can nourish our inner essence. But it also unleashes our creative potential to meet our greatest challenges. Most of all, the virus compels us to contend with the basic fact of life’s fragility and to do what’s necessary to live ethically and morally grounded lives.