The COVID-19 coronavirus outbreak has everyone spooked, and hopefully, taking steps to control the outbreak and prepare to get through whatever may come of it. But one group faces additional risks and consequences, as well as anxieties: people with disabilities and or chronic illnesses.
Here are five points to keep in mind about how the coronavirus outbreak affects disabled people:
1. The people most often cited as being at serious risk are largely, by some definition, people with disabilities.
While simply having a disability probably doesn’t by itself put someone at higher risk from coronavirus, many disabled people do have specific disabilities or chronic conditions that make the illness more dangerous for them.
Unfortunately, any natural anxiety disabled people might have about the COVID-19 outbreak is likely made worse every time news reports and official statements go out of their way to reassure everyone by saying “only” elderly and chronically ill people are at serious risk. It feels awful to hear people reassure each other that coronavirus isn’t that scary because it will mainly hurt and kill “high risk” people. Remember, that’s us you are talking about, and we can hear you.
At the same time, the connection between people with pre-existing medical and disability conditions could become blurred, and disabled and chronically ill people could be unfairly stigmatized. People of Asian ancestry have already experienced discrimination because of underlying prejudice and people’s vague associations between COVID-19 and China. Everyone should be on guard against any fear-based impulse to ostracize or confine people who have, for example, chronic coughs or breathing difficulties that are normal for them, and are not by themselves evidence of exposure to COVID-19.
Because of all these and other factors … both active and anticipated … people with disabilities may be experiencing a higher level of anxiety about coronavirus. And anxiety poses risks of its own.
2. It can be harder for disabled people to take prudent steps to protect themselves from the coronavirus outbreak.
Expert advice on preparing for an outbreak makes logical sense and should be followed as much as possible. But many disabled and chronically ill people’s past experiences with medical bureaucracy and obtaining responsive, flexible assistance makes us skeptical that we will be able to follow all of the recommended advice successfully.
For one thing, some disabled people can’t isolate themselves as thoroughly as other people, because they need regular, hands-on help from other people to do everyday self-care tasks. Also, laying in supplies of groceries can be difficult for some disabled people to do, when shopping of any kind is always extra taxing, and they rely on others for transportation. For some of us, even cleaning our homes and washing our hands frequently can be extra difficult, due to physical impairments, environmental barriers, or interrupted services.
Some people with chronic health conditions even worry that they won’t be able to get the extra supplies of medications that are being recommended to the general public. Depending on the medications, and what kind of health insurance a disabled person has, just getting regular refills in a timely manner can be a challenge, even when there isn’t a public health crisis.
3. COVID-19 coronavirus threatens not only disabled people’s health, but their independence.
Some disabled people depend on regular help and support from others to maintain their independence — that is, their ability to live in their own homes rather than in nursing homes. group homes, and other institutional settings. Outbreaks of communicable disease can disrupt these services. Aides and caregivers may become sick themselves, or the risk of catching or spreading illness may require aides and caregivers to stay home, interrupting disabled people’s services.
It is also worth considering that especially during an outbreak, congregate care facilities are not necessarily safer for elderly and disabled people. They are the opposite of isolated. Facilities may have access to more medical resources to treat and control the illness. But a single disabled person at home, with at most one or two careful and prepared aides, may actually benefit some from their relative isolation. Medically we can’t say for sure which is the “right” setup for any particular disabled person. That means we need to keep open minds, and set aside preconceptions we may have about what health and safety look like for people with various kinds of disabilities.
We don’t know exactly how this will play out. The important thing to remember is that the risks of COVID-19 for disabled people don’t run only in one direction, or take only one form. And the greater risks may not be from actual disease, but from the disruptions in services and routines it can cause.
4. This outbreak has the potential to add new perspectives and urgency to a number of long-time disability issues.
Workplace accommodations and flexibility …
People with disabilities and chronic illnesses regularly struggle to carve out flexible work arrangements, including reasonable accommodations and telecommuting. Such measures are now being looked at in a different light by many employers, in response to a problem affecting all workers, not just those with disabilities and ongoing health conditions.
Centralized care in institutional facilities vs. decentralized home and community-based services …
As noted above, preconceived ideas about the relative health risks of centralized care and decentralized home care are being viewed now in new ways. Many disability activists have for years contended that the purported safety of nursing homes and group homes for elderly and disabled is overrated. COVID-19 highlights the fact despite the apparent advantages of more controlled, medically-supervised environments, there are also health risks involved in housing people with health vulnerabilities in hospitals and other kinds of care facilities.
Health care organization and affordability …
Health care is one of the most intensely polarized issues in politics today. While everyone seems to have strong opinions about how to organize and pay for health care, the public health consequences of America’s patchwork system have rarely been so clear. Controlling contagious disease requires immediate access to care, and a minimum of red tape and affordability barriers. When people have to weigh the possibility of huge bills resulting from taking prudent preventative steps, public health for everyone suffers.
5. You can help a lot just being aware and sensitive to the specific risks and obstacles faced by disabled people in an outbreak of contagious illness like COVID-19.
Panic is neither warranted nor helpful. But don’t minimize the risks or try to talk disabled people out of being worried. For all of the factors outlined here, and taking into consideration many disabled people’s past experiences, it’s not unreasonable for us to be concerned. We are not just worried about getting sick, but about whether support systems we rely on will “have our backs” the way they should.
Employers, teachers, health care providers, families, and friends can help by allowing disabled people as much practical and emotional leeway as possible to cope as recommended, and as they themselves may need. Now is not the time to tighten the reins, or try to impose what you think is best for disabled people.
If you live and work with a disabled person … or if you assist, care for, or serve people with disabilities and/or chronic health conditions … take the risks to us seriously and be extra careful with your own precautions so you can remain healthy and able to help.
Information, updates, and guidance from the Centers for Disease Control and Prevention (CDC):
Coronavirus disease 2019 (COVID-19) from the ACL, Administration for Community Living, a division of the U.S. Department of Health and Human Services focused on helping disabled people live independently outside of institutions and care facilities.
8 Questions Employers Should Ask About Coronavirus, including discussions about sick leave and telecommuting, from the Harvard business Review.
What You Need To Know About Coronavirus (in American Sign Language), from the New York City Mayor’s Office for People with Disabilities.
How to deal with coronavirus panic when you’re experiencing health anxiety, from Metro News.
#Coronavirus and the disability community #COVIDー19 #COVID19, a collection of disabled people’s discussions on Twitter, assembled by disability activist Alice Wong of the Disability Visibility Project.
Personal reflections from disabled and chronically ill people, from Creakyjoints.org, a publication of the Global Healthy Living Foundation, a nonprofit organization serving people with chronic illness: