Introduction: Coping in isolation – People with disabilities belonging to the COVID high-risk group speak out

COVID-19 has changed everyday life for most people around the world in just a few weeks. Some countries, for example, Italy, were hit harder than others, but almost all of them realized how serious this pandemic has become. Most cases of infections seem to be mild or even asymptomatic. However, for those of us who belong to the COVID-19 risk group, Coronavirus infections can become severe or life-threatening. Coping with those uncertainties and the ever-present bad news surrounding us is challenging.

The media around the globe report about the rising death toll, a shortage in medical supplies for our front-line workers, the lack of a proper response by the world leaders, and we learned that all of a sudden, toilet paper and hand sanitizer seem to be the most valuable purchases in several countries. Often, it is not considered how those actions – especially the hoarding of medical supplies – affect the vulnerable population. And besides the usual amount of inaccessibility, people with disabilities now face discrimination and ignorance by some of the people around them and their own government on top of it. 

All countries do their best to contain the spread and to protect the majority of society. However, as it is often the case, people with disabilities aren’t considered. While the whole world is overwhelmed by the prospect of not having enough hospital beds or ventilators for all affected people, countries such as the UK, and Germany, as well as varying states in the US,  have discussed implementing triage plans that could possibly put people with disabilities at a disadvantage, prioritizing the lives of non-disabled people in case of shortage of supplies, like ventilators. 

Besides the fear of being left to die in case of an emergency, people belonging to the risk group additionally have to worry about other humans who deliberately ignore the serious threat Coronavirus poses not only for risk groups but also for healthy individuals. The common theme ‘But I won’t die from this; it only kills older or chronically ill people’ has lead to the Twitter Hashtag #HighRiskCOVID19, where people with disabilities and chronic illnesses all around the world give a face and voice to the vulnerable population that is being hurt by this ignorance and explain why their lives matter just as much as everyone else’s. In a more explicit language, the risk group and their allies urge others that have taken social distancing too lightly to stay inside by telling them to #StayTheF**kHome, like many people with disabilities have been doing long before the Coronavirus pandemic was in sight.

ABILITY Magazine’s Karina Sturm wanted to know how people living with disabilities and belonging to the high-risk group of COVID-19 feel during these uncertain times. How do they cope with isolation and social distancing, what are their fears and worries, and what would they want people who don’t belong to the risk group to know. ABILITY Magazine asked people from all around the world to share their thoughts in short selfie-style videos or during an online interview, following strict isolation to protect us all. 

KARINA, 33, San Francisco, California

Karina, a woman wearing a black beanie and a warm, pink jacket stands at a green fence. In the background is a forrest.
Karina, Journalist with ABILITY Magazine.

Karina is a 33-year-old German native who currently resides in San Francisco, California. She has been living with Ehlers-Danlos syndrome and several other conditions leading to an invisible disability. In the past, Karina worked in a research lab. Today, she is a filmmaker and journalist, working with ABILITY Magazine besides other international publications. As a former laboratory technician, she finds being part of this pandemic intriguing, but as a chronically ill person, she is terrified.

Karina has recorded herself speaking about her feelings related to COVID-19

 

COVID-19 Video Transcript:

My name is Karina, I live in San Francisco, California, and I am a freelance journalist and filmmaker. Besides that, I also live with an invisible disability caused by a condition called Ehlers-Danlos syndrome. San Francisco has been under a shelter-in-place order for a few weeks now, but honestly, my life hasn’t changed much. I usually work from home and I rarely leave my house anyway. However, this total isolation from my social circle has made it pretty hard for me to cope with the increasing anxiety caused by COVID-19. Relying on the people around me to keep me safe, doesn’t make me feel very comfortable, and not knowing what might come and how bad it is going to be, adds to my fears. I wish people would understand that while they might not die from this, I might. And that their actions directly influence everyone around them.

 

 

This is the first video of the COVID series. Please check out all the videos here.

 

by Karina Ulrike Sturm

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