My husband Leor and I have been in lockdown for a year now. Neither of us can risk getting COVID-19. I’m at high risk for being infected. I also could have serious complications or death from it due to underlying chronic illness.
My health problems include low immunoglobulin M (a condition that makes you more susceptible to illness), an autoimmune disorder, and a neurological issue.
Leor is my sole caregiver. If he gets it and can’t take care of me, I’ll have nowhere to turn.
For a year now, I’ve postponed doctor appointments, haven’t done physical therapy, and have avoided the chiropractor except when I’m in agony. We don’t take outings or have socially distanced get-togethers with friends or family. It’s too dangerous.
Same goes for getting haircuts or trying outdoor dining. We shop online and get our groceries either delivered or through curbside pickup. We can’t even take the chance of taking walks in public parks, because we could end up passing too close to people on paths.
We’re lonely and burnt out. But we can’t get sick, so we soldier on.
When news of the vaccine came out, we had hope that life could get back to something approaching “normal.” Yet disabled people aren’t being considered in this all-important push to get the population vaccinated.
Disabled people have been treated badly throughout the pandemic. States and individual doctors have made judgments about our “quality of life” that put us at the back of the line for treatment. In at least one case, a hospital actually killed a disabled person who had COVID-19. It’s been ugly.
The vaccination process as it now stands doesn’t look much better. So far, decisions about how vaccines will be allocated are in the hands of the states. This leaves us at the mercy of a patchwork of policies, most of which don’t take our needs into account.
Disabled people and their caregivers haven’t been figured into most states’ plans for vaccinations. The Centers for Disease Control (CDC), which provides guidance on who should get priority, doesn’t mention disabled people. It suggests vaccinating people with certain medical conditions early. But other than Down Syndrome, disabilities aren’t on the list.
Because I have immunity issues, I was able to squeak into the second phase, 1B. But that turned out to be meaningless. We live in New Jersey, where Governor Phil Murphy decided that this phase will include people 65 and over, along with anyone else over the age of 16 who has an underlying condition…or is a current or former smoker.
By including smokers, he opened up this phase to just about anyone. No one has to prove they ever smoked. And anyhow, how many of us went through a smoking phase in our youth?
Sure enough, after I got a text saying I was eligible for the vaccine, I found that all the sites but one in my county were overrun and no longer taking appointments. The last one is a proposed “super site” that hasn’t been built yet.
I got an appointment there for mid-April, and my husband for late April. That’s a long wait.
I know that by now I shouldn’t be shocked by the ableism of the government and CDC. But I am. There are few provisions for us, little or no awareness of our unique needs, and no recognition of the greater toll that the pandemic is taking on most of us.
For example, like me, many of us need daily help from caregivers. ANCOR, a nonprofit that’s been tracking vaccinations, has found that only 15 states have prioritized caregivers.
My husband qualified only because he’s paid by Medicaid to take care of me and therefore is considered a healthcare worker (which he is). But most caregivers, whether family or professional, are being lumped in with the general population.
Not only is this unfair, but it’s also dangerous for those who depend on professionals. Those who serve multiple clients could be carrying it from home to home. It’s a disaster waiting to happen.
There’s no thinking behind these policies. In Massachusetts, young healthy people who work as researchers or in information technology are ahead of seniors for the vaccine. The state, which has a nexus of healthcare systems in Boston, made the decision to give all employees of these systems priority—even if they have no contact with patients and work from home at a desk job.
This leaves the elderly and, of course, the disabled out in the cold. They’re waiting far longer than is acceptable.
Other states are coming up with self-styled approaches that harm disabled folks. In California, Governor Gavin Newsom announced the state would switch to an age-based approach. This puts disabled people under the age of 65 at the back of the line.
It sounds like it’s more bad news for people with disabilities,” said Andy Imparato of Disability Rights California in an article in the LA Times.
Disabled people in group homes are getting shafted as well. USA Today reports that those who live in them are two to three times more likely to contract or die from Covid-19. Yet, few states have included them in the early push to vaccinate.
According to The Washington Post, Washington, D.C., Maryland, Alabama, and many other states are leaving group home residents out of phase 1A, instead pushing them to later phases. Other states aren’t prioritizing them at all and putting them into the later phase with the general population.
This is just cruel. They’re just as vulnerable as the elderly, yet they’re being passed over.
It’s promising that major media outlets report on the problems we face. But so much more needs to be done. Our lives depend on it.