Just like many of you, I felt ready and was looking forward to the beginning of the 2020 triathlon season, I was eager to race against my friends and my rivals. But since the beginning of this pandemic, I’ve had a chance to reconnect with my community in many other ways.
I’d like to use this blog to share with you what the past few weeks have been like for me. This all started when I was standing in my grocery store, waiting for Willy, one of the workers who usually helps me to do my shopping. As I reached out and grabbed his familiar shoulder, I realized that something had changed, I was 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 corona virus, many disabled people 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 disabled people 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.