We are living in unsettling times. We are surrounded by images showing us exponential growth curves of COVID-19, or the coronavirus, cases around the U.S. and beyond, in what is now a global pandemic. The situation is even more baffling, anxiety-filled and stressful for people with disabilities, many of whom already face underlying health conditions and other comorbidities.
In fact, disability categories were listed in the top-10 “at risk” populations in the Centers for Disease Control and Prevention recommendations for mitigation strategies sent to local counties. People in the disability community also have to worry about family, friends and other support that we rely on and that are critical for our functioning and maintaining a decent quality of life.
“This period of enforced social distancing brings disruptions in the schedules of people with disabilities. The mechanisms of support — life support, social support, continuity — are fraying at the edges. When we wake up, we do not know what the new day will bring. Will we be forced to go outside, to relocate, can we find the things we’ll need to survive? Will the person who brings our groceries also inadvertently carry the virus that will kill us? All of these unknowns swirl around and choke us,” said Karen Nakamura, professor of anthropology and Robert and Colleen Haas Distinguished Chair of Disability Studies at UC Berkeley.
Indeed, “social distancing” is the term you hear when you tune into any media source. It’s the new buzz term, the new kid on the block. Many in the U.S. and around the world are hearing of this term for the first time in their lives in recent weeks. The term is approached with a mixture of fear and excitement. Excitement because it seems to provide a tangible way to deal with the need of the hour, slowing the spread of COVID-19, and because of the messages all around us (whether from the media or the campus administration) regarding the importance of practicing social distancing for the global coronavirus pandemic.
At the same time, social distancing is also a concerning and less desirable idea for most, as no one relishes the thought of being isolated from the rest of society. After all, being part of a valued social group is a fundamental human need. As a result, the public comforts itself in the knowledge that this new “social distancing” they are hearing of is a temporary phenomenon, which can be safely tucked away out of sight and out of mind once the pandemic has subsided.
The irony in all this is that social distancing is not something new, or a medical precaution to be grouped with the frequent washing of your hands, which is the other big piece of advice of the day. Some groups have been painfully aware of the practice of “social distancing” for a long time now. Social distancing has been widely practiced against people with disabilities, whether it’s physical disabilities, mental disabilities or neurodevelopmental disabilities such as autism.
The irony in all this is that social distancing is not something new, or a medical precaution to be grouped with the frequent washing of your hands, which is the other big piece of advice of the day.
Social distancing as a term was first coined in the 1920s by sociologist Robert Park. In the 1930s, the Bogardus social distance scale was developed to measure people’s desire to keep a distance from individuals in socially devalued groups. Variations of that scale are still prevalent today in the many studies being done on the issue. Social distancing scales basically ask people the extent of their willingness to be close to those from “outgroups,” with measurements ranging from high distance (willing to live in the same state as a person with a given trait or condition) to much closer connections (willing to be close friends with such a person, or even close relatives through marriage with them).
“For many people with psychiatric and intellectual disabilities, social distancing has been much of their experience — forced withdrawal from school, sequestration in homes or institutions and missed opportunities. A social life was always something that happened to other people,” Nakamura said.
As a minimally speaking autistic with significant challenges, I have been painfully aware of social distancing for much of my life. It is the way the kids from some special education classrooms are the socially isolated group in one part of the playground or even have a different recess time from the neurotypical kids in public schools. It is the deeply hurtful way a visiting parent intentionally moved her child to their other side as they passed by me and my aide in the hallways of Dilworth Elementary School. Yes, my autism does include stimming or off-beat mannerisms, but I was just a small third or fourth grader then. Maybe the belief of such people is that autism, like a virus, is “transmittable” and thus a reason for social distancing.
Social distancing is also being automatically excluded or ignored in activities that neurotypical kids are involved in. Ironically, the unspoken social distancing rules toward autistics like me did not apply on Halloween when there would be a host of costumed neighborhood kids at my doorstep asking for candy. Social distancing was something that could be turned on or off at the whim of society around me when it suited it.
For me, the term social distancing equates to loneliness and isolation due to nonspeaking autism. Most of my life has been spent trying to overcome and reduce this social distancing, and my college experience at UC Berkeley (though not without its bumps) has been a delightfully refreshing upgrade.
I was all the more intrigued when I heard UC Berkeley professor of psychology Stephen Hinshaw speak on social distancing during his talk on stigma and autism at the 1:59 Autism Spectrum Disorder DeCal, of which I am a student instructor, in mid-March. He jokingly remarked that he had wanted to rub his eyes in shock when he saw the term on a website a few weeks back, but of course, you are not supposed to touch your face. Now he sees the term in almost every post from any administrator or the campus. Hinshaw has been studying and writing about stigma and social distancing for a long time now.
“Social distancing is that place on the continuum between living on the same planet with somebody with a stigmatized condition to being much more socially close with them. We want to erode social distance and have closeness,” Hinshaw said during the class.
“Social distancing is that place on the continuum between living on the same planet with somebody with a stigmatized condition to being much more socially close with them.”
— Stephen Hinshaw
Stigma results from a fear that disabilities are somehow contagious, so you keep a social distance from the person regarded as contagious. Hinshaw added that we are now being told that in the age of COVID-19, social distancing is a good thing, but we have to be aware of the hidden meanings of that term.
Hinshaw acknowledged that the new normal for the good of the group in order to prevent the spread of the coronavirus is to practice social distancing. He wished that a different term had been used, however, as he had been fighting social distancing through his work on stigma for the last 20 years.
Alastair Iles, associate professor in the campus Department of Environmental Science, Policy and Management, points out that the disabled community has often been regarded as the “other,” a group to be stigmatized and isolated. This is more so for people with more visible disabilities such as wheelchair users, a blind person using a cane, a deaf person signing or those with intellectual and developmental disabilities associated with childish looks and off-beat mannerisms.
According to Iles, disability has often been understood to be God’s punishment or, “as a possibly contagious disease in itself, and … people who perceive themselves as normal feel they must avoid disabled people to be safe.” Though his own disability is not visible, Illes has encountered unwillingness by some people to further engage with him once they know he is deaf, which is essentially a form of social distancing.
Iles feels that what is now being termed “social distancing” is more of a “spatial distancing,” for which you have to be both six feet apart from others and cut back on all interactions that could spread microbes. He said we really need that spatial distancing now, and it is effective, as seen in other communicable disease outbreaks. He is quick to point out that while spatial distancing could help protect people with disabilities in the current situation, it could also deprive them of vital support and connections when they need it the most.
Iles also wonders about the way distancing is being understood and practiced now when he goes on his walks. Some pass him at a distance, make eye contact or smile, thus maintaining both social connection and spatial distance. On the other hand, he finds that younger people in their 20s and 30s seem to excessively avoid him by deviating across the road or ignoring him altogether. For Illes, it felt like a denial of the existence of interactions and shared community, which resonates with how disabled people are treated. He believes you can practice distancing in very different ways.
I spoke with a few other students with disabilities on campus to get their take on “social distancing.” It was all done online or via email, of course, given our current climate.
“I think now that social distancing is necessary, neurotypicals will get a glimpse of what living with non-speaking autism is like,” wrote David Teplitz, a political science major.
Incidentally, I feel social distancing is often confused with social interaction skills that some autistics may struggle with and which can lead to the mistaken impression that all autistics like to be left alone or “socially distance” themselves. For some autistics such as those who are nonspeaking or minimally speaking, social interaction skills may be impacted due to communication challenges. It is not lack of desire for interaction, it’s just that it can be a somewhat dampening experience when, for example, you can’t quite keep up with the rapid pace of the back-and-forth spoken communication of your peers when your typing is slow and awkward.
For other autistics, social interaction skills may be affected by challenges in fully grasping the nuances of social norms, which makes them the “outgroup.” For that matter, even the able-bodied, neurotypical introverted person has a harder time with social interaction skills than the neurotypical extrovert.
For Anna Bernick, an American studies major, the current situation is “automotive. We already surround ourselves with screens for hours on end and now we have to for most social interactions. It sucks.”
Brian Liu, who studies integrative biology and applied math, also had a hard time fitting in while growing up due to his autistic traits such as taking things too literally.
“I was unable to tell that a friend didn’t want to talk to me when they literally said they enjoyed talking with me. It is when I have something in mind, but the way I express it is misunderstood,” Liu said. “Social distancing happens, which leads to more social distancing. It leads to rumors being spread, as you sit there fixed, watching it unfold because your experience goes unheard.”
Liu feels that perhaps nondisabled people find it hard to distinguish between social distancing and physical distancing, as they tend to think of social gatherings as physical gatherings, “whereas to certain disabled folks, it feels like an honor to even be included in an online group, which they would consider a social gathering.”
Even with the current “social distancing” norms in place, Liu found that after checking in with a group, many people had actually caught up socially with a lot of their friends online. Liu, on the other hand, has had to initiate almost all his conversations.
It is clear that the disabled community’s perceptions of social distancing are very different from the current usage of the term. Words matter, and other terms that have less historic connotations can be used. Perhaps a good place to start is to rebrand the current “social distancing” to the more accurate “spatial distancing” or “physical distancing.”
Perhaps a good place to start is to rebrand the current “social distancing” to the more accurate “spatial distancing” or “physical distancing.”
I also worry about the way “social distancing” is used jokingly in memes as a temporary and infrequent phenomenon. Will this trivialize or normalize its use in the future, post-pandemic world? Will it just become the mainstream and acceptable “thing to do?” Will it be okay to socially distance any “group” (such as people who have disabilities) for any reason in the future, as everyone’s had to do it currently?
According to Iles, public health experts are saying we will go through a few rounds of “social distancing,” so it is possible that people will become accustomed to this behavior they currently find alienating and stressful. This might lead to a greater tolerance of distancing behavior in the future. He adds that like countless times in the past, power inequalities could well play out and result in distancing exercised toward certain marginalized groups with the claim that it’s justified for safety and well-being. It might also be considered acceptable for some groups to distance themselves from a problem while leaving vulnerable populations more exposed. Relating to this topic, Illes is currently working on an article about agricultural workers and the disease.
“What might be a bit different is that the virus threat will be invoked in the future to stigmatize various groups — as those who are supposedly more likely to be “carriers” of the virus. Or, the memory of the virus will be used in this way,” Illes remarked. “But you shouldn’t assume that it will happen; there are strong social bonds between people — we are social beings for the most part.”
Times of crisis often bring out the best in people too, as demonstrated by the countless stories of generosity during this time of need. Even in the midst of the coronavirus pandemic, people have been quick to offer free resources online such as yoga classes or access to educational materials. There has been a quick restructuring of business and educational models so that life, studies and work can continue from the isolation of home. People are finding ways to socially connect with strangers in many small ways. Let’s not confuse our current spatial distancing with social distancing.
I want to believe Charles Darwin’s take on the human species as one of “survival of the kindest,” and not just “survival of the fittest.” I want to believe our human society has great capacity for goodness and compassion for all its members. And now that more of society has had to experience the pains of isolation for themselves, dare I dream that society will rethink social distancing against marginalized groups such as the disabled community in the post-pandemic world?
Contact Hari Srinivasan at [email protected].