Supporting Parents and Caregivers of People with I/DD
On Wednesday, January 20th, Joe Biden was inaugurated. And I got the vaccine. It has been a momentous day. It feels like the beginning of the end of a dystopian novel, and I really hope this one isn’t a trilogy. I cried a few times that day. It has been so hard, the past four years of Trump’s presidency, and these past 10+ months of the pandemic. It has been hard for me, even as I recognize how many people have it harder than I do.
And so I share news of getting vaccinated with some hesitation. Did I really deserve it? People are suffering, tired, and scared, and there just isn’t enough to go around. I hope this situation changes soon, with better federal leadership.
My husband and I are the parents of a beautiful, funny, sweet, and vulnerable teen with a disability. He will need us forever. Not in the way we all need our parents (well that too), but in the way that he may need direct support for living, loving, and working for the rest of his days. This is okay with us. He brings a lot of joy to our lives. He can stay in our home as long as he wants to until we really can’t keep up anymore. I dread that day, and it’s an essay for another time, but I hope with all my heart that day is decades away.
The California Department of Developmental Services issued guidance that parents/caregivers of people with certain qualifying intellectual and developmental disabilities (I/DD) could be considered health care workers, and thus be vaccinated in the first wave, 1A. I imagine they did this in recognition of the fact that if we weren’t able to care for our son, the state would need to spend a lot to support him for many years. I think they may have been trying to help protect people with I/DD as well, who have a higher rate of hospitalization and death from COVID-19 than people without I/DD. (For this reason, people with I/DD and other disabilities should also be prioritized to receive the vaccine. Tips for Californians who want to advocate for this are here.) Our teen is too young to receive the vaccine for now, but if the vaccine prevents us from transmitting it (something scientists are still studying), that provides some layer of protection for our him.
Though I don’t believe it was the intention of the guidance, I also feel moved by being recognized as a caregiver. My husband and I do a lot of invisible work. We are exhausted. The vaccine alleviates some of our pandemic worries and I hope it allows us to get a good night’s sleep earlier than we otherwise would have.
Even given all this, I felt some uncertainty about getting the vaccine. I didn’t want to take someone else’s shot. But there is no way to ensure that whoever got the dose I didn’t would have been more in need. It may have ended up in the trash. I think the more people that get vaccinated when the state says it’s their turn, the better. So we did it. I am grateful and relieved.
