I love a person with a disability. My older sister, Edna, is 36, but she was named after our grandma, so it sounds like she was born in the early 1900s. I am a year younger and her guardian. Our parents died when we were young and our grandma took care of us until she died, too. My sister currently lives in a group home with roommates and has round-the-clock caregivers.
She used to live with me, but I could not take care of her on my own. Not if I wanted to hold a job, take care of her and take care of myself. My heart goes out to the millions of parents and siblings and caregivers who are quarantined at home and in facilities, caring for people with disabilities. It is already difficult work, emotionally and physically.
In the beginning of March, my sister’s doctor asked me what my plan was for the coronavirus. I barely knew what she was talking about. I heard about something happening in China, but as we so often do in America, I thought, “That’s not here.” But it was here. My sister’s doctor knew that there would be a shortage of test kits. She knew this would be bad. I called my sister’s home and asked what the plan was. They said my sister and her roommates would continue to go to their day programs and they would follow all future guidelines set by the CDC.
A week later, they stopped going to day program. A few days after that, the caregivers were having to take their temperature and answer questions about their health before they were allowed to clock in. Additional cleaning guidelines were established, no visitors allowed, no outings for the residents.
I wondered if I should bring my sister home to quarantine with me. I posted in a sibling support group on Facebook asking what others were doing. Many echoed my same fears, they couldn’t do it on their own, they needed help. Everyone was scared. Everyone was worried. Our siblings did not understand what was happening, why we would no longer be visiting or taking them out. As their loved ones, we want to protect them. But sometimes we don’t have the means or ability to do that in our own homes.
The last time I brought my sister to my apartment, I took my eyes off her for less than a minute and when I came back, she was gone. She went out the front door and had fallen off the step, landing on the sidewalk. I found her on the ground, bleeding and confused. I had no one to help me then and I would have no one to help me now. What if either one of us were to get sick? Then what? Who would help us? She has to stay at her home and I have to hope for the best.
One of the hardest parts is not knowing how Edna feels about all of this. I wish she could tell me. We see each other on FaceTime and she’s smiling, but how much does she understand about why I can’t visit her? I don’t know. All I know is I love her and I want her and all people with disabilities to be safe and considered.
As I read the news, it is becoming increasingly clear that people with disabilities are being left out of the conversation, which is no surprise, given it happens when we aren’t in the midst of a global pandemic. Now, more than ever, we must remember that there are some people with disabilities who cannot advocate for themselves or take care of their daily needs. I realize this is not the case for all people with disabilities, but some. There are brave, dedicated caregivers who continue to provide care, despite the risk, despite not being paid accordingly. We can not, we should not, for one second, forget about people with disabilities and their caregivers.
This week, my sister and her roomies had “drinks by the pool.” They set up an inflatable pool inside the house and sat around it, drinking sodas in their wheelchairs. That’s really all you need to know about the care they receive. I can assure you it is not the norm and I am grateful from the depths of my soul that she is in good hands. The caregivers are not receiving hazard pay to continue to show up to work day in and day out. They have their own families to take care of. One of the caregivers, her son has cancer. She continues to come to work. They are heroes.
If there is a family in your neighborhood caring for a person with a disability, ask them how they are doing. The question alone will help. If there is something you sense they may need, just do it. The people who helped me without asking and without pity were my saving grace.
If you are able, please consider donating to organizations like the United Cerebral Palsy Foundation of Los Angeles, who runs several group homes in LA, Ventura and Santa Barbara Counties. Google organizations in your area who are providing care to people with disabilities and find out how you can support them. But please, whatever you do, do not forget about people with disabilities. They need to be part of the conversation, now more than ever.
