surgical mask is held by the elastic on a peg by a door. Everything in the shot is painted green, with the words 'take care' painted in red on the door, on level with the body of the mask.

While many countries have gotten Covid-19 under control by now, the US has dramatically failed that challenge. We are among the worst countries in the world in terms of both infections and fatalities from this disease.

One of the biggest spikes this year was associated with Thanksgiving, which is usually the biggest travel weekend of the year. The tradition is to go home for Thanksgiving and be with family—unfortunately, for many people, that has translated into travel, including by plane, and as a result, a lot of people unintentionally passed Covid-19 to their family members.

Hanukkah has already started this year, and Christmas is around the corner. Both of these holidays (as well as most of the other holidays happening around the winter solstice) have a focus on family and community and have traditions that include an expectation or assumption of extended family spending time together.

This provides a great opportunity for the Covid-19 virus to spread, and all it takes is one person in any of these groups carrying Covid-19 for the entire group to get it.

Holidays are full of social pressure

There is this pressure from society on the holidays to gather with your family and friends and celebrate together.

For some people with disabilities, that itself increases the risk of depression because we’re often socially isolated. This feeling is a lot worse this year because many of us have been forced to isolate ourselves at home due to Covid-19 concerns.

For people at high risk of Covid-19, they and their families have been forced to isolate themselves into very small social bubbles to protect themselves.

I’ve also heard stories from high-risk disabled individuals whose families don’t understand the risks and have dismissed their concerns, making it more likely that they may catch Covid-19 and pass it on to their high-risk family members who are likely to die if the contract the virus.

Al and my situation

I know that I’m in more of a moderate-risk category, as is my partner Al.

He has an autoimmune disorder, which weakens his immune system somewhat, but he’s tended to be pretty resilient in terms of getting sick.

My condition, Functional Neurological Disorder (FND), doesn’t particularly increase my risk of a strong reaction to Covid-19, but I’ve noticed over the years that my immune system is pretty pathetic, with minor viruses often turning into more severe infections that require antibiotics.

I’ve learned to expect that if I catch a minor bug, it will turn into something worse, and I’ll likely be weakened/less functional for weeks to a month or so, occasionally longer.

I don’t want to catch Covid-19. I don’t particularly think I’d die from it, but I do suspect I’d be pretty miserable, and judging by past illnesses, I think I’d be pretty lucky if I “only” had issues for a couple of months.

two medical professionals in full protective gear stand near the head of a patient with an oxygen mask, discussing treatment.
I don’t want to experience this, and I definitely don’t want to be the reason somebody I love goes to the hospital.

My mother looked at the whole Covid-19 situation and pretty much put herself and her husband on lockdown.

They usually either get their groceries delivered or do curbside pickup, have mostly stayed home, and have only seen family members outside while masked. We’ve been meeting weekly via Zoom, and that’s been about it.

Al’s family has pretty much formed a multi-household bubble—his parents, his sister and her husband and their children, and her husband’s mother. The focus is on the kids, and the grandparents have been watching them while Al’s sister works from home.

We did Thanksgiving with his family (their bubble plus us), and it felt pretty good to spend the time together, and we didn’t feel too at risk (not only do we all live in the same county, we’re all less than a 20-minute drive apart).

For Christmas, Al’s uncle usually flies up and stays for a while. This year, he intends to do so as well.

Everybody else in the family seems fine with this, unconcerned about Covid-19—but I am concerned about everybody’s safety, especially his uncle, who is willing to make the flight.

To be clear, I don’t think his uncle’s going to do anything stupid or intentionally increase his risk. However, he will need to go to a crowded airport in Florida (which hasn’t been great about managing Covid-19), then get on a plane, where he’ll be breathing recirculated air for the whole flight, then go into another crowded airport, then get picked up by his sister and brother-in-law.

I’m concerned about all the people in the airport or the plane spreading Covid-19 to him, and I’m worried about him potentially getting Covid-19, and about him possibly spreading it to Al’s parents. They’re all in their 60s and 70s, so in the higher-risk categories.

I don’t want any of them to catch Covid-19, and I’m concerned that he will be exposed at some point on his journey.

It can take on average 11 days for symptoms to appear, and he’s coming in on December 20, so there isn’t enough time between his arrival and Christmas to even know if he caught it.

Why understanding Covid-19 is especially critical for the disabled community

Covid-19 is a virus, one that spreads easily from person-to-person contact (or even from standing near one another). While it doesn’t live too long in the air, it’s carried in the liquid we breathe out and can travel relatively far in the air (definitely more than the six-foot distance the CDC recommends).

As a community, many of us are at moderate to high risk of both catching Covid-19 and having a bad (possibly fatal) reaction to it. All immunocompromised people are among the highest risk for Covid-19.

On top of that, people with lung or heart issues and extremely obese people are also in the high-risk category. Many disabling conditions limit our ability to exercise, and so as a community, disabled folks are heavier and “less healthy” than the general population. While not every person in the disabled community is at substantially more risk than their able-bodied peers, many of us are.

woman in a wheel chair with a determined look on her face, a red cape flying behind her, and a red mask around her eyes.  She is wearing red boxing gloves
While those of us with disabilities are often superheroes in some ways, many of us have weaker immune systems than our peers and are likely to have severe reactions to a Covid-19 infection.

We also are more likely to spend time in hospital settings, which can increase our Covid-19 exposure, or lead to us not getting all the services we need. I know that I had my migraine treatment delayed due to a temporary ban on invasive procedures that weren’t essential.

There have also been cases of medical care rationing across the country when the outbreaks have been especially bad, and due to ableism and associated issues, too many disabled people have been deprioritized when it came to care, including being put on ventilators and other Covid-19 treatments.

So it’s a scary time to be disabled, and we’re facing an uphill battle in terms of treatment or support, while being higher risk of contracting Covid-19.

Conflating trust, safety, and spreading disease

Al’s parents and many of the folks he works with have combined a couple of concepts in ways that aren’t helpful when it comes to stopping a contangeous condition.

Specifically, while his family is good about wearing masks when they are out and interacting with strangers, they seem to believe that because they love and trust somebody, that means that they don’t have Covid-19 and aren’t going to give it to them.

Al and I have been strongly encouraged to continue spending time with his family, are assumed to be spending Christmas Eve together as usual, and his parents are generally behaving as if Al and I are fine just because they care about us and we care about them—despite the fact that Al is working in a small office with six other people, most of whom don’t wear masks while at work.

When Al and I stopped going over to his parents for Sunday dinners, his parents didn’t understand why. As the weeks passed, Al learned that his mother started wondering if I had started disliking her or something as I didn’t always come outside when they brought us Sunday dinner.

two women bump elbows in greeting while wearing medical masks
Hugging and handshakes are risky in terms of Covid-19 spread—elbow bumps have been suggested as a safer alternative.

We resumed Sunday dinners, in large part because Al’s parents’ attitude was that they’d rather see us and take the risk of getting Covid-19 than not see us regularly and still possibly contract Covid-19 and die without seeing us.

It feels a bit dark to me, but I respect their mindset. They recognize Covid-19 as the potentially deadly disease it is, but feel that it’s worth the risk to see their children and grandchildren.

A few weeks ago, I started having some congestion, had a sore throat for a day or two, and then this past week, I had a couple of coughing episodes. I worried that I might have Covid-19 (just learned I tested negative today), so we stayed home the past two Sundays.

When Al called to let his mother know, she initially thought that we were afraid of catching Covid-19 from her and was explaining the precautions they were taking—it took a while for Al to convince her that we were staying away because we love her and didn’t want to risk giving her Covid-19 if we had it.

Viruses aren’t impacted by trust or love

Viruses don’t care about their hosts’ relationships. Their purpose is to grow and reproduce. Anybody carrying a virus will unintentionally share it with whoever else is breathing the same air, touching the same surface, or otherwise comes into contact with that virus. Everybody who has had Covid-19 got it from contact with another being carrying the virus.

You can spread it before you know you have it, and some people are completely asymptomatic.

The only way to not spread it is to completely avoid all contact with all other people. But we aren’t built for that, so we take our chances and try to find the right balance between the risk of catching Covid-19 and the cost of minimal contact with other people.

Al’s coworkers mostly wear their masks in public-facing spaces (as is mandatory in New Jersey), but often remove their masks while in the break room or the shed (where Al works) or other backroom spaces. The sentiment Al has heard most often is that they “trust” one another and “feel safe” not wearing a mask since they have all been getting through the pandemic together.

We are emotional decision-makers and are extremely prone to emotional decision-making. Nobody wants to suspect their loved ones of doing something to hurt them, and so the desire to be “normal” (and not wear a mask) with family is strong.

This illustration, created at the Centers for Disease Control and Prevention (CDC), reveals ultrastructural morphology exhibited by coronaviruses. Note the spikes that adorn the outer surface of the virus, which impart the look of a corona surrounding the virion, when viewed electron microscopically. A novel coronavirus, named Severe Acute Respiratory Syndrome coronavirus 2 (SARS-CoV-2), was identified as the cause of an outbreak of respiratory illness first detected in Wuhan, China in 2019. The illness caused by this virus has been named coronavirus disease 2019 (COVID-19).
This is what the virus looks like. It finds new cells to inhabit and reproduces in them. That’s what viruses do.

Despite intellectually agreeing with my sister’s decision to discourage her kids from hugging anybody outside the household and encouraging her kids to wear masks, it still has hurt the few times I’ve seen the kids that they don’t come running over to give me a hug.

I know this is safer for them. I know that they are less likely to get Covid-19 because of these habits. That doesn’t keep me from feeling sad when my nieces and nephews don’t come running to give me a big hug when I come over like they used to.

The decision to deny or minimize the risk of getting Covid-19 from “trusted others” can leave everybody hurt. If folks do get Covid-19 from a family gathering, the survivors may well feel guilt from having the event, and the family may not have other sources of help or support around when they most need it.

For folks at especially high risk (like many of us in the disabled community), participating in even small gatherings becomes more risky if people aren’t reliably wearing their masks when interacting with others.

Also, if we’re saying no to events we usually attend, those who invite us also may be hurt or feel rejected by our refusal to go this year. They also may take offense, hearing a refusal as an insinuation that they are “dirty” or “diseased” or otherwise unsafe, even when it isn’t the intent.

Loneliness and social isolation: another push to ignore safety precautions

Another big problem for the disabled community is that we are more likely to be impacted by loneliness and social isolation.

During “normal” years, many disabled folks find themselves alone too often, feeling disconnected from family and/or friends, and struggle to find the energy to make or maintain these important social connections.

This year, it’s much worse for many people. Many social centers are closed to protect against the spread of Covid-19, and many communal living facilities have been the locations for Covid-19 outbreaks and deaths.

Many people have lost their jobs, and most people have had to be more cautious or selective about who they spend time with in person.

Unfortunately, many of us with disabilities are already relatively isolated and so feel the loss more strongly or are extra sensitive to additional losses.

The holidays are a time for family to gather together, and this year many of us are extra starved for social time and social connections.

This means that there is extra internal pressure for us to go to whatever we can, to participate in whatever is available, and to celebrate with those dear to us, even though it is riskier than usual.

There isn’t a right answer or a no-risk solution

This holiday season has extra fears and challenges, and the stakes can feel higher than they would in other years.

While for Al and I spending Christmas Eve with his family (including his uncle) is usually something we actively look forward to, this year there are definitely extra stresses and concerns that make us hesitant to go, and concerned for his family’s health and safety.

Going means that we’ll be putting ourselves at higher risk of catching Covid-19, and because his uncle is planning to come, it is considerably riskier than attending Thanksgiving was.

Not going not only costs us the joy that accompanies the event, but also is likely to upset his parents, who may see our absence as some form of accusation or rejection, which has its own negative reprocussions.

There is no winning here. If his uncle ends up not coming, we’ll be facing the disappointment of his absence, but feel safer about attending the event.

If his uncle comes, then we’ll be worried about our safety and have that extra stress if we attend (most likely we’d ignore those fears in the moment, but I would be worrying about it before and afterward), or the disappointment both we and the rest of his family will face if we stay home.

No matter what, there’s going to be some sense of loss and some negative difference—and the only thing that Al and I can control is whether or not we attend.

a woman and her spouse(mostly offscreen with just a hand visible) toast champagne flutes towards their computer, with their young daughter sitting between them eating dinner
This is the safest way to celebrate the holidays with others outside your household.

Meeting in person is not and cannot be risk-free. In all honesty, Al’s family is not actively taking any actions to reduce the risk. As a relatively small group that represents only three units, each of which is taking reasonable precautions, our gathering is less risky than that of a larger group or a group that has not been taking any precautions against Covid-19.

My family has already decided not to host an in-person holiday event, but to have a Zoom celebration instead. That is the safer choice and intellectually a wise decision.

Emotionally, it hurts to know we won’t be together in person, and I know I won’t get as much joy out of it as I would at an in-person event.

Intellectually, I know that by doing this, we’re improving the odds that we’ll all be able to celebrate together next year.

I’m proud of my family for making the best decision possible in the moment, and for showing their love by doing everything in their power to keep our family safe.

I very much understand Al’s family’s decision to keep celebrations as close to normal as possible and to want to all be together for the holidays. I want things to be okay again.

However, because of that decision, Al and I need to decide if the sense of normalcy with his family is worth the increased risk of Covid-19 this month. And while we’ve discussed it, and roughly agreed that it may not be, we still feel torn, and know that it’s a tough decision to make.

Analyzing the degree of risk

While my family is being extremely cautious, Al’s parents aren’t being stupid by doing this. They are taking on some additional risks in order to have the holiday they want.

The risks Al’s uncle is taking by coming up feels like too much risk to me, but I know that he too is disabled, has been cautious to minimize his risks, and will do everything in his power to stay safe on his trip up.

I trust Al’s uncle to be as safe as he can be—I just don’t trust all the Covidiots out there to not put him at risk.

Al’s family isn’t having 50 people come by (a potential superspreader event). The family isn’t planning to go out to the local bar or mix with a lot of other people. On Hartford Health’s scale of risk, I think our plan is around a 5 or 6, moderate risk.

His uncle is taking a calculated risk by flying up from Florida.

We’ll be together (unmasked, because we’ll be eating together and so on), indoors (it is winter, after all), but there are only 10 of us. There will be the central cell that have been together through the whole pandemic, plus Al and I and his uncle. And that’s it.

woman sits on a hard-cased suitcase, with a surgical mask on at an airport.
Flying anywhere during the Covid-19 pandemic is risky, no matter what precautions you take.

This is definitely riskier than my family’s plan of having a very Zoom-based holiday, but we’ll be taking somewhat controlled risks (more risks than the CDC recommends, though). We’ll be a small group (10 people) and we won’t be participating in in-person holiday celebrations outside of that small group.

After his uncle, Al’s the one at highest risk of contracting Covid-19 because of his exposures at work (and we suspect he’ll spend at least one day around Christmas interacting with customers like he did on Thanksgiving), so it’s possible that we’re also a reasonably large threat to the family in terms of Covid-19 risk.

I haven’t experienced the direct exposures Al has, and so feel like I’m taking very few chances, when the reality is that by living with Al, I’m taking on much of the risk that he is.

This is something I knowingly agreed to, as we didn’t want him to lose the opportunity this job represents even with the increased risk caused by Covid-19.

His uncle flying up from Florida is an increased risk, but it is honestly hard to quantify the degree of risk of a single flight while masked and taking appropriate precautions versus daily interactions (mostly masked) with six colleagues who don’t feel the need to wear their masks at work. While it is the same six people, each of them is constantly interacting with others and taking other (unknown) exposure risks.

I’m opposed to adding to our risk (I feel like Al’s potential exposure is at the edge of my comfort zone already), but I am honestly unsure how much of it is an emotional reaction as opposed to logical and reasonable.

I’m still undecided if it’s a risk worth taking. It would be much easier for me if, like my family, the temptation were removed—but that isn’t the reality of our situation.

Also, Al’s family isn’t being irresponsible about this, just less conservative than my family is being.

It’s a tough decision, and one I’m still not 100% committed to.

Determining your degree of risk for the holiday

I’m sure everybody is trying to decide what to do for the holidays. What degree of risk is worth taking? How much is too much?

If you do say no, what might he long-term impact be? If you say yes, are there ways to minimize your risk?

Thinking about it is vital. Whatever your decision is, be prepared to own it. Also, be realistic about what you can or can’t do to protect yourself.

For example, when discussing the holiday celebration, Al started to say that maybe we’d wear masks or back away from the children.

I pointed out that so far, we hadn’t ever worn masks with his family, and we’d definitely be eating and drinking at the event.

I didn’t want us to agree to rules we wouldn’t follow, or pretend that we’d be taking on less risk than we would in reality.

If we’re going to do something, I wanted us to be completely aware of the risks we are taking and understand the possible consequences, and then agree if it’s worth the risk or not.

group of friends, possibly two couples gathering together and waving towards a tablet one is holding up
This isn’t a very safe way of celebrating the holidays, though a group of four getting together is safer than a larger group.

That way, if we go, we’re prepared for the possible outcome (Covid-19 infection) and are ready to take responsibility for that decision, so we don’t blame it on others.

For Al and I, Covid-19 isn’t hugely likely to be deadly, which helps, but it’s still definitely something we don’t want to experience.

The CDC is strongly recommending that everybody stay home and only celebrate with others in their households. Intellectually, that is absolutely the best move to make, and I highly recommend following it if at all possible.

However, I recognize that lonliness, emotional fatigue, and familial pressure also exist, and can make it much harder to follow those suggestions.

If you primarily are feeling pressured to go, think about why and what you can do to manage that (Al and I, for example, have considered self-quarantining and framing non-attendance as our attempt to protect his family from our potential exposure, rather than avoiding his uncle).

If you really want to go to something, ask questions and consider previous events this person has hosted so that you know the degree of risk you are taking. How many people are going? Are people expected to wear masks? How’s seating arranged?

I know that Al’s sister and brother-in-law definitely feel that Covid-19 is overblown and similar to the flu, so I expect there to be no changes from the usual setup.

We’ll all be sitting together at one table, sharing food and drinks, and then watch the kids open presents around the tree. Nobody will be wearing masks. If somebody at the event has Covid-19, the rest of us will be exposed.

As a small group that has been following many of the safety precautions and been keeping relatively isolated, it’s safer than other potential events.

It’s still definitely a risk, and I am grateful that the only people whose health we may be risking is Al and my own since we will not be seeing my family in person.

You are responsible for yourself, so make the best decision you can for yourself and your household and be prepared to live with it.

Pinterest image: In the upper right corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of A green wall and door.   A white mask is visible, hanging from a hook in the door frame. The words 'take care' are visible in red paint on the door. The lower half of the image reads 'The many challenges Covid-19 has added to the holiday season'
Pinterest image: In the upper right corner of the picture is the Thriving While Disabled logo, while the upper half is a picture of A green wall and door. A white mask is visible, hanging from a hook in the door frame. The words ‘take care’ are visible in red paint on the door. The lower half of the image reads ‘The many challenges Covid-19 has added to the holiday season’

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2 Comments

  1. Very well explained. The emotional ties sure are strong, though. It’s easy to say, missing one day isn’t a big deal. But, when it comes to family, it can be so hard to say no.

    1. Absolutely!
      We actually did end up saying yes. We had a great evening, and so far nobody has Covid-19 symptoms. The final piece for me was that our gathering was contained. Al’s uncle was staying with his parents, and Al and I were the only additions. My family had already decided not to gather in person, so we weren’t likely to spread it if infected. I’ve been laying low since, and we’ll be with Al’s family again for New Year’s and possibly in between and later. So far, so good, and I think somebody would likely be having symptoms by now, so I’m hopeful that we dodged a bullet in this case. I suspect this is one of the riskier things we’ve done since Covid-19 really hit. We would have said no if things were different, but I’m glad we were able to enjoy the time with Al’s family.

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