Tue, Mar 31, 2020
Read in 3 minutes
Ottawa Hub, Canada Originally from Maryland, USA/Gwangju, South Korea
My brother was supposed to move into his first “independent” home the weekend after President Trump’s first coronavirus address to the nation. In his late 20s, and a person with an intellectual disability, he had finally gathered up the courage and the will to move out of our family home in the States and live in a group home.
His move is now delayed indefinitely. His world remains mostly his bedroom. He can’t go to his part-time job or to church. Of course, he has our family to keep him company, but he wants to be a typical 20-something, with people his own age, his own space, his own friends, and his own decisions. He’s playing video games, watching TV, getting bored, growing increasingly frustrated and staying, as he has been most of his life, alone.
Through our Ottawa Global Shapers Hub, I co-lead Discovery Crew, a project bringing together young professionals and young people with intellectual disabilities. We had a movie night and bowling night scheduled for March and May, both of which have been postponed because of COVID-19. I can’t say for sure how our Crew members reacted when they heard the news of our postponement, but if they’re anything like my brother, they felt the frustration and sadness of crossing off one of the very few events on their calendar.
Because, here’s the thing. My brother was lonely long before this. And he’s not the only one. We know that 45% of people with intellectual disabilities report feeling lonely (that’s compared to only 10.5% of the general population). He doesn’t understand the need to stay inside. He’s wondering when he’ll get to go to the movies, get to a restaurant, move out, finally feel free. So many of us are experiencing loneliness like we haven’t ever before - but my brother already knows loneliness. He is, more often than not, alone.
What I’m experiencing are new fears - beyond my concerns for the economy and my friends in the healthcare field, supporting the small businesses I work with at my job, yelling at any and all boomers to stay inside, caring about my family, and the trepidation over the many things we may have already lost forever.
Does my brother know how important it is to wash his hands? Does he really understand what social distancing means and why we’re doing it? Is he going to stay away from people that are coughing or sick when we finally are allowed back into our communities? Would he tell us if he had a fever? Do his caregivers and do medical professionals see some of the disaster preparedness plans that’s coming out of States like Washington, Utah, New York, and Alabama that recommend rationing care? Do they plan on specifically not providing ventilators to people with people with intellectual disabilities? Do they know that the guidance is specifically around people with “severe mental retardation”? Who makes the determination of “severe” in the moment you make the life-saving choice to give a patient a ventilator?
I read an article today about a woman with Down syndrome named Emily Wallace. She lived in a group home in Georgia and she was one of the first people with an intellectual disability to get married in her state. A few weeks ago, she was diagnosed with COVID-19.
I wanted to stop reading, but I couldn’t, because I knew how the story ended. Emily’s symptoms worsened. She was taken to the hospital. She died alone.