The Holidays Without my Brother:
The Impact of COVID-19 on People with Intellectual Disabilities
I won’t be seeing my brother at Thanksgiving. I haven’t seen him since his home went on lockdown on March 18th because of COVID-19. I knew the facility would be temporarily going on lockdown, so I took him on a shopping trip and picnic the day before the closure. When I settled him back in his room and hugged him goodbye, I assumed I would see him in a month, maybe two months at the most. The virus would be contained quickly, and we would resume our regular lives, I assured myself. I wistfully look back at my naïve, blissful ignorance.
My brother is 57 years old, but his IQ places him around the understanding level of a five-year-old, maybe younger. He lives in what is called an Intermediate Care Facility. My parents have been deceased for over ten years now, and I am grateful they found a home before they died where my brother is content. His needs are more than I can handle on my own, and there is over a ten-year waiting list for in-home services in Oklahoma. The excellent providers and other residents in his home have become, in essence, his family. He is safe, and he is loved. I am thankful.
Yet, on that day in March when I left him, I never dreamed it would be over eight months and counting until I saw him again. I mail him cards and packages, and my friends have been kind enough to add to his stream of eagerly anticipated mail. When we talk on the phone, he always asks in his stilted communication, “When, coming up?” I repeatedly explain to him in the simplest terms that I cannot visit because of a sickness going around the world. My brother has had COVID-19, several of the staff members have had COVID-19, but he still doesn’t fully understand. He only knows his sister is not visiting, not taking him shopping, not taking him out for pizza and ice cream. He only knows that for some reason, he is not coming home for the holidays, and he worries if Santa will find him. Every night when we talk, it breaks my heart over and over and over again.
My heart is breaking, but my head knows he is in the safest and best place. The death rate for people with intellectual disabilities is three times the rate as others with COVID-19. There are many reasons for this increased risk. First, many are already medically fragile with underlying health conditions such as respiratory problems. These issues make them more susceptible to pneumonia. My brother has had two hospitalizations in the last ten years for pneumonia, a condition that places him at a higher risk for having a severe case of COVID-19. People with Down Syndrome are more vulnerable to COVID-19 because they are more likely to have congenital heart defects. They may also have low muscle tone around their neck and have a larger tongue, creating a risk for choking and subsequently developing lung infections.
Another factor that places people with intellectual disabilities at risk for getting COVID-19 is that they are more likely to live in group homes or facilities, exposing them to more people. Between 16 and 20 percent of people with intellectual and developmental disabilities live in congregate settings. They’re also at higher risk because they often require care from aides or therapists, making physical proximity necessary.
I wish my story were unique, but sadly similar situations are happening all around the world. Countries that have been successful at containing the virus have listened to the scientists and medical experts. I’m angry at the lack of proactive leadership in the United States and Oklahoma specifically. Governor Stitt refuses to take any meaningful measures despite rising hospitalization rates and the scarcity of ICU beds.
I’m disappointed that people do not consider that their actions impact other people’s health, potentially costing others their very lives. How have we, as a society, become so selfish? Without arguing the science, if there is even a fraction of a chance to spare another person’s suffering by wearing a mask, I will be wearing a mask. I’m usually a laid back, “live and let live” person, but each individual’s decisions affect us all in this pandemic. We’re in the most significant group project of our lives, and everyone needs to participate!
Debra Wimpee is a city councilor in Broken Arrow and is adamantly opposed to a mask mandate. In addition to false information about the virus and masks, she also made the following statement, “If you’re immune-compromised or elderly, you should just stay home.” She also said, “I think we all should get a little healthier. Why don’t we all start taking vitamins and take care of ourselves? And if you are overweight and have an autoimmune disease and have issues and asthma and all these things that can cause you to possibly not make it through COVID, then stay inside,” What a ridiculously privileged, insensitive, and discriminatory perspective.
My brother got COVID-19 even though he has not left his facility since March. Many of the almost 260,000 Americans who have died from COVID-19 are in the same category as my brother, vulnerable people living in long-term care facilities. Wimpee may not realize many people cannot be responsible for their health as she self-righteously advises. You can give my brother all the vitamins in the world, and he will still have disabilities. Many people are dependent upon the compassion and wisdom of the community. A much wiser man, Gandhi said, “The true measure of any society can be found in how it treats its most vulnerable members.” We are falling sadly short in that measurement.
What can you do? Wear a mask, stay home if you can, socially distance, and limit social gatherings, especially those indoors. If you can’t do it for yourself, do it for my brother, your neighbor, or your elderly grandparents. If ever there were a time to care about the welfare of others, this is it. No one is asking you to hide someone in your attic or give a stranger a kidney. It’s a mask, only a piece of fabric. Do it so someday I can see my brother again. Wear one because you’re a decent human being.