I never completely understood why so many people are distressed by the thought of getting old. Of course, I get that there are stigmas around aging and that there is a certain magic to being young and carefree. I also understand what it’s like for your body to not cooperate with what you want it to do or the experience of a new ache or pain that slowly creeps into your everyday experience. I miss having a full head of hair and what now seems like limitless energy. Even still, getting older has always been a great joy for me. I just had my 39th birthday. I am at or near middle age and couldn’t be happier about it.
Like many disabled people, I have been told by doctors more than once that I was unlikely to make it this far. Like many disabled people, I have watched many of my friends in the disability community die too young. Talking about it is taboo, of course. Society expects us to grin and overcome our tragic lives, like Tiny Tim. The disability rights movement expects us to keep quiet about our fear as we watch our comrades die in their sleep or on operating tables because such conversations contradict the narrative of disability pride.
I have never been more fearful of my own death than I have been over the past year. For me, COVID-19 precautions are a high stakes affair. With a cocktail of co-morbidities in my body and my DNA, leaving the house is a winner-takes-all gamble. In addition to caring for two toddlers and holding a full-time job while trying to shelter in place, this virus has added an extra layer of mortal dread to my everyday life.
This is why I see every birthday as a major victory. I don’t think about how I am one year closer to death, but rather focus on how I lived one year longer than I might of if I had less privilege and less luck. I think that is the fundamental difference between my experience of a birthday and the experience of many non-disabled people. They expect to live into their old age and see every year that passes as a step toward their demise. In contrast, I hope to live into my old age and see every year that passes as bringing me closer to that goal.
About Joe Stramondo: Joe is an assistant professor at San Diego University and is extremely active in the disability community. In his spare time, Joe strives to be the best father he can to his children. Click here to learn more about Joe.