Guest post by Sofie Sergeant, Researcher and Education Coordinator, VU University and Disability Studies in Nederland
I’m writing this at the table in the living room.
My youngest daughter is sitting beside me in front of a sheet of paper of long division sums. She had started working in her own room early this week but is now looking for my company: “I don’t want to be alone all the time.”
I hear stories about places where people receive care. People who don’t understand why everything is different. There is panic, fear, aggression and also loneliness. I could have written about COVID-19 and how it affects vulnerable people, people with disabilities or chronic illness. But I want to write something different, share a different side of the story.
I just spoke to my colleague Henriëtte Sandvoort. We were on the phone for about an hour and a half. Henriëtte works for the ‘LFB’, an advocacy organization of people with mild intellectual disabilities. Now she works from home: “I’m doing pretty well. I find myself quite used to being alone. Fortunately, I have the necessary discipline to work from home.”
Jacqueline Kool writes to me in an email: “My sister and I, we also talked about it this week. We are used to facing fear and not hiding from it… I understand the fear of others and also understand that it translates into hoarding, for example, just to have the feeling of control. And I hope people “dare to look the beast in its foul eyes,” as journalist/writer Karin Spaink once said. Because eventually every fear becomes more manageable in one way or another. And above all: take shelter together, even if it is digitally and from a distance.”
It’s nice to have contact. I tell them I intend to write this piece. “Good idea,” but Henriëtte added, “Don’t write too pitifully. Because I am not to be pitied.”
This virus affects us all. The fear that healthy people are now experiencing, is often not so unknown for people with disabilities. Experts, people with disabilities and their families tell me this is not so new to them:
Having to wait.
Dealing with boredom.
Afraid of illness and pain.
Fear of the future.
Worried about family.
These are major issues and I can also feel them in myself now. I miss so many things, small and big, silly and less silly. I miss the chats in the store, drinking coffee with a friend, going to the movies, organizing a party, planning a trip, taking my daughter to karate, the white wine with other moms, working on the train, and planning something and assuming it is going to happen.
I would like to end with the words of Henriëtte: “We must support and comfort each other, so that none of us has to feel alone. And after this Corona thing never forget that we are all just people.”