How will our world change after the pandemic?
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Will go completely back to normal and try to forget all of this ever happened, the way so many Americans did after the 1918 Influenza pandemic? Will we just change a few habits, policies, and plans to confront future outbreaks? Or, will we go a bit further and make bigger reforms we once thought impossible, but now seem both feasible and wise? We should probably be wary of attempts to use the COVID-19 pandemic to “win” long-standing political arguments. On the other hand, we would be foolish to ignore how the pandemic might legitimately reshape and re-prioritize old policy and ideological debates. And we shouldn’t be afraid to do some key things quite differently from now on.
Maybe nations and governments around the world will find the wisdom, techniques, and urgency to cooperate on genuinely global threats, like pandemics and climate change.
Health care debates, so centered in the United States on cost and the public vs. private divide, may now take capacity and nationwide organization into account as well.
Then there is the potential impact on the oldest political argument of all — finding the right balance between public health and safety, and individual liberty.
And in the disability sphere especially, our experience with the pandemic, however it turns out in the end, may suggest new ways of looking at some old issues.
1. A wider acceptance of doing business online, “from home.”
The COVID-19 pandemic has brought unprecedented acceptance of living life online. Millions of “essential” workers are unaffected and unprotected by this option, and most of the rest of us are anxious to get back to living life “in person.” But this embrace of online life has struck a chord with many disabled people, who have long fought for the option to work, learn, and do business “from home.”
Disabled people have decidedly mixed emotions about this. On the one hand, we are glad to see employers, schools and universities, and government offices adopt business and communication practices that offer disabled people more flexible, accessible options. We hope against past experience that once proven, these new options will remain active after the crisis is over.
On the other hand, it’s hard not to feel taken aback at how quickly and enthusiastically the “work from home” lifestyle has been accepted, almost as a fun novelty. For decades, disabled people have lost major opportunities because of what now turns out to have been indifference, or simple human reluctance to try doing things differently.
It’s not about trivial convenience. Disabled people lose jobs because they aren’t allowed the option to work from home, or even apply. Disabled students are forced to drop out of college because professors and administrators won’t be flexible about on-site attendance when disabilities flare up. Disabled people are punished and penalized for missing all kinds of appointments and hearings due to ill health, unreliable transportation, and above it all government and nonprofit agencies that refuse to modernize and offer even the most simple online tools. Even during the pandemic, it’s far from certain whether voting access will be improved by allowing universal access to mail-in ballots, or whether insistence on in-person voting will disenfranchise millions, including disabled and medically vulnerable citizens.
To be clear … not all disabled people want to work from home. Some of us have jobs that can’t be transferred home. Many disabled people lack adequate devices and internet connections. And many of us prefer to work and learn outside of our homes, side by side with our friends and coworkers, and face to face with customers.
Online and work from home options have sometimes been sold to disabled people as an alternative to making workplaces more accessible and less discriminatory. This is not what we are looking for. Working from home should never be treated as a substitute for community accessibility, accessible transportation, and community integration.
But for some disabled people, working from home is a great option … just as is for many non-disabled people for other reasons. In particular, the ability to work from home occasionally, as our disabilities fluctuate, can literally save our jobs, keep us on track to graduate, and stay in compliance with important legal and financial obligations. And the COVID-19 pandemic has proven that while we can’t move an entire economy online, being open to working from home can be an important tool for long-term survival and stability in unpredictable circumstances. Disabled people can and should benefit from this insight most of all.
2. A new urgency to the trend away from congregate care.
As the COVID-19 pandemic moves into its next phase, some of the attention is shifting from shortages of ventilators and other equipment to the horrific death tolls and apparent neglect in densely populated nursing homes for the elderly and disabled, group homes and institutions for people with intellectual and developmental disabilities, and mental institutions. When so much of the battle against the virus depends on isolation, these kinds of congregate care facilities seem uniquely and inherently unsafe.
Of course, there is a long pre-existing debate between the congregate care/facility approach to long term care, and the home and community-based services model. In recent years, the disabled community has strongly advocated a deliberate move away from nursing homes and institutions, and towards investing much more in home and community-based services. Robust home services make it possible for people who need everyday help to maintain their health and independence in their own homes, integrated into the community, and on their own terms … rather than having to live in a nursing home or other institution.
The purported selling points of congregate/facility care are order, safety, and socialization, while the main advantages of home and community-based services are freedom, individualized attention, and the comfort of living in your own home. A key pro-institutional counter-argument is that home care is chaotic and uncertain. Another is that it is inherently isolating and lonely. Meanwhile, one of the principal pro-home care arguments is that institutions are inherently abusive to individual dignity and well-being. Another is that institutional care is safe in theory, but notably unhealthy in practice.
Already the COVID-19 pandemic has dramatically highlighted this last point … the unique danger of infectious disease that comes with congregate facilities. Home care is under-supplied and neglected in this pandemic, too. But it stands to reason that elderly and disabled people living on their own with one or two visiting help have a better chance of isolating and avoiding COVID-19 infection … and not spreading it to others … than people in even the “best” institutional settings, surrounded by dozens of other residents and scores of staff rotating in and out from the community at large.
It is important to be clear that while there are clearly bad actors in nursing homes, mental institutions, and developmental disability care systems, the core problem here is really built into the systems themselves. Put simply, buildings full of medically vulnerable people, cared for by a high density of staff, are breeding grounds for illness, especially during serious outbreaks.
It’s a problem similar to hospitals, which most medical professionals recognize as inherently unhealthy, which is one of the reasons why patients are admitted to them only as a last resort for acute illness, and discharged as soon as possible. Hospitals can always do better to control infections, as can long-term care facilities. But at a certain point the safter thing, even for sick people, is to be in their own homes.
True, the COVID-19 pandemic has also highlighted the dedication and heroism of thousands of people who work in these facilities. Most of the people working in nursing homes and group homes are probably doing their best, and deserve our admiration and thanks.
The problem is the congregate model itself. That is why the COVID-19 pandemic could and probably should prompt an even more critical look at whether institutional models of long term and disability care should be phased out, or at least radically reconfigured for short-term, transitional purposes more like hospitals … while we expand the availability of home care and individualized, decentralized community supports to make crowded, densely-packed institutional care the exception, rather than the norm.
3. More attention to disability issues … or less?
Yes, there are substantive changes that many in the disabled community hope will come out of the COVID-19 pandemic. For the most part we aren’t shy about wanting to find our own silver linings in all of this. The history of disabled people is full of good things emerging out of bad. But our history also teaches us that it takes very little to derail progress and stuff us and our priorities back out of sight.
For a precious few months this Fall and Winter it looked like American politics were finally grappling with the full range of disability issues and priorities. Presidential candidates like Julian Castro, Kamala Harris, Pete Buttigeig, and most comprehensively, Elizabeth Warren and Bernie Sanders, put forward strong, sweeping, and responsive disability policy proposals unlike anything ever offered by any candidate for office. There were missteps, and some of the ideas could be fairly criticized as unrealistic given current political constraints. But for the first time, it looked like disability issues were being taken seriously … not just symbolically, but substantively. It seemed like disability issues might matter in the grand scheme of things at last.
But the candidates who had the most to say on disability matters have dropped out, and the presumptive nominees … though vastly different ideologically … so far aren’t putting in nearly the same amount of time and care into their disability community outreach. And then came COVID-19, and just about every other issue has taken a back seat.
The pandemic has generated some new attention to disabled people’s hardships, but not yet on what we actually need to be done. Once again we see the usual yawning gap between sympathy for disabled people, and caring about disability issues.
There is still time to turn things around, both with candidates for office, and on key disability issues and priorities. The pandemic has provided some promising openings. But it could in the end just as easily slam the door.