In these #Quarantimes, since the outbreak of COVID-19, I have been thinking a lot about the harms of social isolation. Since long before the outbreak, the consequences of isolation have been well-documented. Social isolation has been linked to health problems from depression to heart disease. About 20% of U.S. adults report feeling isolated on a regular basis. One of the Grand Challenges of Social Work is to eradicate social isolation.
The quarantine represents an especially intense version of isolation and we cannot downplay that fact, but some degree of separation from society is sadly, business as usual for too many people. For disabled folks and others living on the margins of society, social isolation is an ever-present reality. In other words, feeling left out and left behind, for us, is nothing new. A report by the organization Scope found 85% of disabled adults report feeling lonely.
As a person with cerebral palsy, I can certainly relate.
Rigid care schedules make spontaneous meetups nearly impossible. Public transit is still off-limits for many wheelchair users faced with access barriers as well as for those with spatial and processing impairments that make trains and buses disorienting. For people who can’t go out without assistance, opportunities to leave the home may be restricted to the few hours of care covered by Medicaid. By the time routine tasks are completed, there may be no time in the shift left to go anywhere. Too many disabled people can’t find affordable, accessible housing and are literally trapped in inaccessible homes. The income restrictions placed on disabled recipients of benefit payments and Medicaid leave little extra cash for any “fun” social outings. We are old pros at self-entertaining and our non-disabled peers ought to take note.
I am well-aware of my privilege within the disabled community. As a white, cisgender, straight woman with a stay-at-home parent who has devoted herself to making sure I’m part of the community, I am very fortunate. My father earns enough money to give us a comfortable life. I live in a safe, accessible house. I have an accessible van that I can use if someone drives it.
And still, social isolation weighs heavily on my spirit.
Beginning in junior high, as my peers became able to go out without assistance, I got left behind. I don’t believe there was any malice, but rather a sense of being inconvenienced, as other kids (and other adults, for the matter) had little interest in seeking accessible spaces to hang out or in navigating my care needs. Most of my high school and junior high friends were others with disabilities who attended different schools, and the peak of socialization for me was my coveted session at summer camp and Friday night phone calls with friends in other schools about whose bus had the most notable screw up.
I was “lucky” that very few people outwardly bullied me in those days, but there was something nearly as horrible about feeling like I wasn’t even there. Often, remote socialization tools, like the phone and the now memorialized AIM chatroom, sustained me and reminded me who I am on days when I felt invisible.
Now, at age 27, I still consider isolation to be the most difficult part of my disability. Too many people still can’t be bothered to get to know me. Grown adults, even those in social justice circles, frequently don’t seek accessible spaces or don’t invite me rather than make accommodations for my care needs.
I don’t expect everyone to create perfect disability access on the first shot, but I wish more folks would make a real effort. I can count on one hand the number of others’ homes I am able to visit because most homes are not built to be accessible and the government offers no financial support or incentives to make them so.
Paratransit is a notoriously good way to miss an event, mass transit in my area is largely inaccessible, and traveling is not logistically or financially possible at times because I must travel with a personal care assistant. I was very fortunate to live away at my university through a unique support program, but even there, the societal barriers that lend themselves to isolation were numerous.
Since I’ve moved back home, four surgeries in an 18- month period have caused me to joke to friends that I’m becoming a houseplant, climbing towards the light and occasionally sipping water. When it’s tough to get out and the world keeps moving around you, it’s amazing how quickly the texts dwindle, the calls stop, and you start to feel like a vague afterthought to some people. That said, the people who continually check in, send silly GIFs, and make a point to include me in their day mean more to me than they can possibly fathom.
As a disabled person, “virtual” connection is a lifeline. Facetime, snail mail, social media, and texting are the meat of my ability to be with others. This is especially true given that many of my friends are scattered around the state and the country, a large percentage of them also struggling to get out because of care schedules, finances, or failing health. Other than the glaringly obvious fact that everything is closed and we are all worried about the virus, my interactions with my friends are largely the same amid the pandemic.
Right now, people in mainstream society are collectively, actively looking for ways to break isolation.
Facetime, texting, Snapchat filters that make me snort, and phone calls are suddenly the stars of everyone’s show. If anything positive is coming of this, it is that society is finally embracing more than one definition of togetherness… and making joyful, wonderful, much needed outlets for people who can’t leave their homes. I’m wondering what those who called my insistence on a virtual conference option in grad school “distracting” and “a lower quality form of engagement” are thinking now.
Do they realize that their dismissal of virtual interaction was rooted in ableism, classism, and privilege?
Think of the distance forms of connection made mainstream, made precious, in a matter of days.
I have seen virtual concerts.
Classes are popping up to learn a new skill online.
Broadway shows are being streamed.
People are checking in “just because.”
Cheesy and beautiful mass sing -a-longs are happening.
We are finding new, inclusive ways to say “I love you” to our fellow human beings.
And I, a person who is regularly stuck in the house, can see quite plainly how many social and entertainment options are available to those facing isolation when each and every one of us makes a genuine effort to create them.
I have ways to hang out with people that I have begged and prayed for on my loneliest days.
Why did it take a pandemic?
The point of this discussion is not to ask for your pity or set up an Olympics of who has it the worst. Nor is it to judge anyone who has overlooked people isolated on a regular basis.
Instead, it is to beg you to keep the innovation coming. When the pandemic ends, when we come out glorious survivors who have lived and loved in new ways, don’t stop fighting to bring people together.
Make virtual hangouts a regular option. Call on corporations to improve delivery services. Keep those online concerts, classes, and Facetime visits coming. Normalize virtual connection and give those tools to those who most need them the most. Check on your people. In these challenging times, we are coming together in new, meaningful ways to make sure everyone, everywhere knows that they are not alone.
When we beat COVID-19, that doesn’t have to change.
 National Institute on Aging (2019). Social isolation, loneliness in older people pose health risks. Retrieved from https://www.nia.nih.gov/news/social-isolation-loneliness-older-people-pose-health-risks on 18 March 2020.
 DiJulio, B, Hamel, L. and Brodle M. (2018). Loneliness and social isolation in the United States, the United Kingdom, and Japan: An international survey. Retrieved from https://www.kff.org/report-section/loneliness-and-social-isolation-in-the-united-states-the-united-kingdom-and-japan-an-international-survey-introduction/ on 18 March 2020
 Bedei, C. (2019).How I deal with loneliness when my disability stops me from leaving the house. Retrieved from Refinery 29 at https://www.refinery29.com/en-gb/loneliness-chronic-illness on 18 March 2020.
Image: Snapchat photo of me with a silly stretched out face and a caption that says "Meet My Work From Home Co-Worker"
Thank You! One of patients sent this to me.ReplyDelete
thanks for reading. Not sure who wrote this but hope your patients enjoyedDelete