A year after it began, people with disabilities still experience the Covid-19 pandemic differently than most. Through these experiences, we have learned a lot about ourselves and our true place in society.
Even before Covid-19 was declared a global pandemic in March 2020, disabled and chronically ill people knew that we were in a unique position, entangled in a web of medical and social factors. Many of us were and still are at higher risk from Covid-19 because of our underlying medical conditions, as well as the secondary effects of our disability-related practical circumstances and status in society as disabled people.
At the same time, many of the pandemic’s hardships were already familiar to us. While we were at higher risk, it sometimes felt like we were better equipped to handle the pandemic than people without disabilities. People with disabilities have disproportionately suffered and died from Covid-19 over the last year. The disability community also learned a lot about the social disadvantages we as a group face in cultures still steeped in ableism. Yet, we have also become reacquainted with some of our distinct strengths and talents.
Here are five observations people with disabilities have come to over the last year’s struggle with the pandemic.
1. “We told you so!”
There is a reason why disabled people sometimes half-jokingly refer to ourselves as “oracles” or “canaries in the coal mine.” As disabled people, we often encounter new problems and threats before most people notice them or truly recognize their potential scale.
For instance, we know what it’s like to need help with some of the simplest everyday tasks, well before others are introduced to the experience through illness, accident, or aging. And many of us sense the weaknesses in standard emergency planning well before disasters happen. We try to warn people. But we are rarely heard or believed until it’s too late. While we are frequently dismissed as over-anxious Cassandras, and our worries are sometimes overblown, just as often we are more prophetic than panicked.
It was like that with Covid-19. Many of us were afraid of it well before it claimed global attention. Our fears for disabled people in particular, which may have seemed exaggerated early on, turned out to be mostly valid.
While degrees of risk varied quite a lot among us, in general people with various kinds of disabilities, including millions who are actually well under 65, did in fact turn out to be among the most vulnerable to Covid-19. People with intellectual and developmental disabilities were hit especially hard, and only quite late identified as needing extra protection and full inclusion in plans to fight the pandemic.
Maybe worst of all, people in congregate care were among the hardest hit by COVID-19. This includes nursing homes, assisted living facilities, group homes, and psychiatric facilities. During the pandemic, a combination of logistical shortages, chronic mismanagement – and above all the inherent dangers of trapping scores of medically vulnerable people and their caregivers under one roof – led to devastating infection rates and death tolls.
These were all outcomes disability advocates and disabled people in general were warning about as early as February and March 2020 – and nearly desperate to be heard about in April and May. People eventually did seem to notice and respond with something close to the appropriate horror and urgency. But by then much of the damage was done.
For a broad sample of how disabled people have reacted our worst fears of Covid coming true, browse the Twitter hashtag #DisabledPeopleToldYou. We don’t exactly enjoy being right about these things. But pardon us for taking at least a bit of grim pride in our prescience.
2. “Forgotten again”
Within the disability community, we debate a lot among ourselves exactly how to interepret the ways we experience discrimination and social disadvantage. Are we targets of hate or just neglect? Are we deliberately excluded, or passively ignored? However, while we frequently disagree on specifics, one thing most people with any kind of disability experience over and over again, individually and collectively, is being forgotten. Rarely has that feeling been so intense or biting as during the pandemic.
It often seemed pitiful and delayed at the time, but it’s remarkable just how much economic aid was actually passed – two pretty huge packages in the span of less than a year. But, while many disabled people received individual help like other fellow citizens, many were also left out of the first rounds of aid.
For one thing, adults who were dependents on other people’s taxes didn’t receive economic stimulus checks in the first two rounds. That included many disabled adults, who have their own needs and participate in the economy, but are cared for by relatives. They, and by extension their families, were left out of both initial aid packages.
Also, neither of the first two pandemic aid bills provided help to struggling providers of home care, or “Home and Community Based Services,” (HCBS). This is despite the fact that home care is a much safer option for elderly and disabled people than congregate care, especially during a pandemic. It was incredibly frustrating to hear people bemoan the death toll in nursing homes, while forgetting the main alternative to them in the otherwise massive Federal response to Covid-19. It was frustrating. But for disabled people, it was entirely familiar.
Finally, when effective vaccines were developed but still in short supply, states didn’t consistently designate high risk disabled people as a high priority for early vaccination. Some high priority groups such as people over 65 and nursing home residents also include many disabled people. And some states have moved people with some long term health conditions up on the priority list. But they have been slow to recognize the broader spectrum of physical, cognitive, and mental disabilities as calling for higher vaccine priority. For more on this, follow the hashtags #HighRiskCovid19, #HighRiskCA, #HighRiskCT, and other variations of “HighRisk” hashtags for other states.
Things are starting to turn around for us. Adult dependents are getting checks in the third round of stimulus passed in March 2020. HCBS services are now getting substantial added support as well. And more states are starting to give disabled people priority access to vaccines. But the wait for all of this was far too long, and none of it would have happened without nearly constant advocacy from disabled people themselves. The best we can say is that once again, we were an afterthought, which is marginally better than being a “no thought.” But being forgotten, again, doesn’t just harm us, it hurts.
3. “Ableism is real”
Covid-19 and responses to it have underscored how we as disabled people are apt to be left behind in a crisis. It has also confirmed what many of us have long believed but often seems implausible to others. Ableism is not theoretical but real, and it can be deadly.
One of the first, most terrifying threats many disabled people faced in the pandemic was the possibility of being refused treatment for Covid because of our “pre-existing conditions.” With ventilators scarce and ICUs overwhelmed, we faced the very real prospect of being deliberately dropped – not just forgotten – in favor of Covid patients deemed more likely to survive and live a “normal life.”
Meanwhile, as resistance to lockdowns and mask mandates intensified, some elected officials, economists, and other respected thinkers felt it acceptable to say, essentially, that elderly and disabled people were expendable. For a while at least, some people actively promoted the idea that our preventable deaths were preferable to a slowed-down economy.
Other policies and practices also put disabled lives at risk, and condemned some of us to needless suffering and death. This included sending recovering Covid patients to nursing homes where they further endangered a mostly disabled population with virtually no ability to protect themselves. It also continues to include states “reopening” too soon, resulting in new waves of transmission that are doubly dangerous and restricting specifically for high-risk disabled people.
Notably, one of the core arguments in favor of downplaying the pandemic and abandoning precautions has been the alternative approach of restricting only the highest risk people and letting everyone else get infected – essentially making high risk people entirely responsible for our own protection. While each of us clearly is responsible for key aspects of our own health, there is such a thing as public health. Some health threats can’t be fought individually. They require a cooperative approach. But apparently people are only willing to sacrifice up to a point to protect elderly and disabled people. And some seem to think it’s better for society to let us, the weaker members of the herd, fend for ourselves and probably die.
After Covid, it’s much harder for us to hold to the comforting illusion that ableism is mostly unintentional and benign. Sometimes, in specific everyday encounters ableism truly is harmless, or merely annoying. But the last year has vividly reminded us that ableism can be harmful – and in a crisis, even deadly.
4. “Join the club”
Throughout the pandemic, we watched non-disabled people forced to cope with restrictions, adjustments, and practices that many disabled people have always had to live with. Many of us have always been physically restricted, due to lack of mobility aids and poor transportation. Lots of us have always had to work twice as hard to shop for groceries, get to doctor’s appointments, or socialize with friends. Working from home has always been a lifeline for some of us, and for others with disabilities an option we were all too often not allowed to choose before it became standard practice during the pandemic.
It’s hard to know just how to feel about this “welcome to my world” feeling, and what, if anything, our past experiences can teach others. Such reflections have dominated discussions among disabled people throughout the year.
We can only hope that this taste of disabled life has been a learning experience for everyone that will carry over into the post-pandemic world. Maybe it will finally add some urgency to the decades-long push to make life more accessible and sustainable for disabled people.
5. “We are afraid, but we aren’t cowards”
The broader conflict over how to respond to the pandemic has been shaped partly by different interpretations of fear. Roughly speaking, one faction has put forward the idea that fear of the pandemic is overblown and debilitating, while the other faction asserts that we haven’t been afraid enough to take the necessary steps to control the pandemic.
On a smaller scale, all of us who have disabilities have at one time or another wondered how afraid we really should be of Covid-19. Not every disability puts one at higher risk. Still, it’s not just our medical conditions that pose a greater danger. Our economic and social situations, and our relative ability to protect ourselves, affect our vulnerability too.
A year later, lots of doubts remain, on all aspects of the pandemic. But it’s clear that disabled people’s fears were in fact justified, not irrational. We were right to be scared.
Yet, despite all of our private moments of terror, and our more public complaints, for the most part those of us who are disabled or chronically ill have done what we needed to do. We have demonstrated both the foolishness of a cavalier attitude of denial, but also the feasibility of being prepared and careful without “surrendering to fear.”
There are certainly plenty of disabled people who saw the pandemic quite differently. Some are undoubtedly among those who still think it’s a hoax, or at most a health crisis of limited historical impact, blown out of proportion out of panic or for political gain. Others with disabilities may take the pandemic more or less seriously, but haven’t been unduly worried for themselves. And lots of disabled people are more frustrated overall about the added restrictions they have had to endure than over the threat of illness itself. Disability experiences are diverse, and we don’t all think or react alike.
Nevertheless, disabled and chronically ill people cannot have come through this past year neutrally. Disability puts a different spin on things. For us, our disabilities will shape how we remember the Covid-19 pandemic. And the pandemic has already shaped how we think about our own disabilities.
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