Living with a Visual Disability during the Coronavirus Pandemic | The COVID-19 Experience from the NOD Team
March 20, 2020 | By Charles Catherine, Special Assistant, NOD
I am standing in my grocery store, waiting for Willy, one of the workers who usually helps me to do my shopping. As I reach out and grab his familiar shoulder, I realize that something has changed, I’m reluctant to touch him.
I’m only 31 years old, but I have already dealt with my own finitude, I lost my sight about 10 years ago. Around 57 million Americans live with a disability, that’s about 20 percent of the population. But even during this crisis, people with disabilities still get out of bed and move through life despite new and unpredictable threats to our health. In many ways, to us, nothing has changed.
Of course, while simply having a disability doesn’t by itself put someone at higher risk from coronavirus, many people with disabilities do have specific disabilities or chronic conditions that make the illness more dangerous for them.
When I go shopping, or when I go for a run, I need someone’s help, I need to touch many things, and I have to remind myself to take extra steps to remain safe and healthy. But for some of my friends, this situation is even more complex. They can’t always isolate themselves as thoroughly as others, because they need regular, hands-on help from other people to do daily self-care tasks.
What I’ve learned during the past few weeks is that the greater risks for our community may not stem from actual disease, but from the disruptions in services and routines it can cause. Some people with disabilities depend on regular help and support from others to maintain their independence. Aides and caregivers may become sick themselves, or the risk of catching or spreading illness may require aides and caregivers to stay home. This crisis reminds us that we are responsible for one another.
I realize that I am fortunate, I am relatively healthy, I am able to work from home, and I actually think that during this crisis many companies will understand that they could have, and probably should have, more flexible work policies and accommodations. But I also know that many jobs will be lost in the coming weeks, and that just like in 2008, people with disabilities will often be the “last ones hired and the first ones fired”.
My parents would probably tell you that my disability has taught me how to live despite my fears, how to navigate a world full of potential dangers. Through my work with the National Organization on Disability, I have channeled some of my fear into advocacy. By organizing with advocates and leading companies who are supporting our work, by reaching out to elected officials with our concerns and needs, I feel useful, and try to accomplish a bit of change that makes things better for everyone. My hope is that in the coming weeks, we will apply the same energy to overcome our fears and come together as a community, be there for each other to face this pandemic.
If I have learned one thing through my disability, it is that there is something wonderful about human resilience, and that this quality is within each of us.
Charles Edouard Catherine joined the National Organization on Disability in 2018 as the special assistant to the president, Carol Glazer. With a background in Global Health, he served for several years as the executive director of the Surgeons of Hope Foundation. He successfully led the expansion of the organization from operating a solo program in Nicaragua to several ongoing, congruent programs throughout Latin America. A 2012 graduate of Sciences Po Bordeaux, France, Charles holds a Master’s degrees in International Relations. Charles is also a classical pianist of 25 years, a marathoner, and an elite triathlete.