March 13, 2020, it was evening. I was sitting in my apartment holding my phone in my hand debating calling off a commitment to speak at a Philadelphia university that evening. On the one hand, I wanted to be safe. Early reports told the public that elderly and disabled people were going to be the most affected. On the other hand, knowing that it was disabled people society was to be protecting, it wouldn’t take long before people dropped any pretense to care and we would never emerge from COVID19. This could be my last night of normal—ever. Knowing that the audience was primarily disabled people, I decided to withdraw and stay home. Since then, I’ve been hankered down. It’s been two years.
Since the beginning of the pandemic, nondisabled people have experienced but a sliver of what disabled people deal with over our lifetimes, institutional failure, feeling disposable, and isolated. Only a few weeks in, they were screaming to have their “freedom” back, debating which lives were worthy or not so they could get back to brunch and, caring more about the life of the economy than the person beside them.
While people glorified a normal that never really existed, every institution that we had neglected in the past began to crumble—and for many disabled people, not only were our lives in danger, but services we relied on stopped completely. People left the direct support industry that historically underpaid workers, remote learning left educators in the lurch and many disabled kids lost access to special education, healthcare infrastructure reached capacity and disabled people were fearful we would be at the end of the line for care. Meanwhile, record numbers of women left the workforce as remote learning fell on their shoulders, people struggled to pay rent and put food on their tables.
Every system continues to snowball towards failure, and yet, people want normal. I question whether they truly want normal or to go back to being blissfully unaware.
While each day seems to get increasingly worse, we can’t pretend we don’t see the cracks in the façade. “Normal” was a lie meant to pacify us and discourage challenging a society built around racism, ableism and white supremacy. Because of these systems, disabled people and communities of color have been devastated all while simultaneously experiencing systemic racism and police violence. And you want normal?
The most frustrating aspect has been how politicians and leaders have responded. Opting to tout a growing economy and business growth while the death toll continues to tick upwards. Even with vaccines and the desire to get “things going again” none of the issues identified because of the pandemic have gone away and politicians are content acting (being) completely ignorant to them.
We cannot afford normal—and it seems that only the privileged are the ones who can actually afford to return to it. To want normal says that you have identified all of the issues put on display and said, “I’m fine with that.” Unfortunately, the rest of us cannot be and never have been alright with normal. To move forward and change nothing despite what we have learned about these systemic failures and the people they affect would be a complete failure to protect ourselves from this happening again. Societies change due to pandemics and mass disease. We need to address pay disparity, paid medical and parental leave and employers taking advantage of their employees. Why, in the greatest health crisis of our lifetimes are politicians not pushing more ardently for universal healthcare, increasing asset limits for those on SSI and Medicaid and unilaterally forgiving student loans?
“Normal” means ignoring all of these things. So we all need to be asking ourselves, why do we really want it?