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Diane Shisk

 

Illness and Disability and Video Calling


As someone whose physical contacts have been limited by illness and disability, I have used video calls for many years. Disabled and chronically ill people have been creative in using the Internet to build closeness. For many of us, it’s our main way to gather with other people. Video calling is not inherently isolating. In some cases, it offers more or different contradictions [to distress] than in-person contact. 


The pandemic is providing many new ways to connect and create community for people with Internet access. While this leaves many people out, it still increases access for large numbers of people, and this can move our thinking about inclusion forward.


It is important for our climate and ecology future that we do less traveling and use less energy maintaining larger buildings. This means that gathering online will become more common. We need to make sure that gathering online is completely available to poor and working-class people worldwide and to people in remote rural locations. Discharging on our restimulations about this technology will allow us to make the best of the tools we have.


Because of my environmental illness, being physically close to people can be challenging. Scented body products and other chemicals in buildings can make me sick. I also have epilepsy, which prevents me from driving, and for the last four years I have lived in rural areas far from my Co-Counselors. I also spent five years in a city far from my home RC Community and my regular Co-Counselors. As a result, I have been counseling online for many years. It has allowed me to maintain my most important relationships across time and space.


Many chronically ill people have active online lives and depend on them. We have become creative at using the Internet to build closeness. I am part of an online community of sick and disabled people with some other shared identities. It has become an important support system for its members in which people share information and resources and ask for specific kinds of emotional support, advice, or opportunities to share feelings without comments from anyone else. I feel so close to many of these people that when I finally met a group of them face to face, I had to keep reminding myself that this was our first in-person meeting. I am currently living in Puerto Rico, and many of these people organized to send packages of medicines and other supplies to us during our earthquake disaster here.


Video-call counseling does not have to feel disconnected. It’s just a tool, and our feelings about it can be discharged. Humans have many different ways of noticing our connections, and we have learned to use new ways of communicating again and again. When the telephone first became widely available, many people found it challenging to use. It felt artificial to talk to a person they couldn’t see by speaking into a machine. But we adapted. I’ve done oral history interviews with people who were alive when the first automobiles appeared. Many people were terrified of them, but we adapted.


While physical contact is biologically and socially important to us, it’s not the only way to feel intimacy. Although physical closeness offers many contradictions, it can also bring a lot of restimulation. My mother and I were close, but our relationship was at its best by telephone. When we were in the same place, many more distresses from her childhood and mine came up. But on the phone, we had much better attention for each other. We can adapt our need for connection to many different tools. When people relied on handwritten letters sent through the mail, the slowness of that communication often added thoughtfulness, and people treasured letters for years, re-reading them again and again. I have had many long intimate phone calls with friends. 


As the climate and ecological crisis deepens, it will be more and more important that we not spend fuel traveling in order to be together in person. We will need to stop spending energy maintaining large meeting spaces. Learning to use our communication technology creatively to build closeness and share thinking will be essential to the next stage of our societies, and this will require us to make sure everyone has access to it. The Internet needs to be universally available and free. We can’t afford to be without a single human mind.


Because I have a lot of social isolation due to my disabilities and illnesses, and I have Internet access, which many people don’t, the pandemic has dramatically improved my ability to connect. Many disabled and chronically ill people, and people in remote rural areas who have Internet access, are experiencing this. The big increase in video conferencing has created much more access to community than we had before. While this access is tied to class privilege, it is still allowing large numbers of people in countries with widespread WI-FI to experience more connection. In fact, while many people are unable to work and earn a living, some of us have more opportunities than we did before. I earn an important part of my income by lecturing and teaching, but travel is hard on my body and expensive. As universities and colleges adapt to the pandemic, I am able to do this work from my home.


I have not been able to attend most RC workshops because of chemically inaccessible buildings and unaware habits around the use of fragrances. Suddenly I can. Organizing workshop food that I can eat for a whole weekend away from home is a lot of hard work that I don’t have to do now. For years I have been asking my synagogue, which is not very accessible, to have at least some of its services available online. It was never a priority until the healthy, able-bodied members began to experience the isolation people like me have struggled with for years. I am more able to connect with the congregation than ever before in thirty years. I go to services and support group meetings and take part in discussions about policies to end classism and the oppression of disabled people. I can see the faces of people I’ve known for years, even though I now live thousands of miles away, in an area with no Jews. I’m able to teach classes with a lot of emotional content to students in faraway places without putting my body through the hardships of travel.


Getting good at this means we’ll have to change how we do some things. It doesn’t make sense to look at a screen for as many hours as we would normally be together in a workshop. We have to get better at making sure our faces are well lit for people who are hard of hearing, using captions, and describing charts and images for people who are blind or can only join by phone. Able-bodied people who are struggling with what frustrates them about Zoom have an opportunity to imagine and discharge about all the obstacles disabled people face every day, and figuring these things out together can help us think better about access in general.


There are many ways to discharge about needing to depend on long-distance closeness. First thoughts:


  • “We are fully connected whether I can feel it or not.”
  • Work on our earliest experiences of physical distance and isolation.
  • Rant about how much we hate the new technologies.
  • Work on other big technological changes that impacted us, people close to us, or our ancestors.
  • “Sometimes humans learn how to use new tools and have fun doing it.”
  • “It’s possible I could grow to love Zoom.”
  • “I finally get to see all my sick and disabled friends!”
  • “I will make sure every human being on earth can share their thinking with this tool.”

I’m interested in how others are discharging on using video calls.


Aurora Levins Morales


Maricao, Puerto Rico


Reprinted from the e-mail discussion
list for RC Community members

(Present Time 200, July 2020)


Last modified: 2022-12-25 10:17:04+00