How to Survive a Plague with a Disability

Karin wearing a plague doctor mask.

As I’m writing this, it is March 2021 and it’s been a year since I’ve updated this blog. Although I don’t only write about travel here, it’s been depressing to look back on my past trips and have to wonder when I could be in the world again. But I’ve been far from silent during this time. You can read many of my reflections on the pandemic and other topics over at The Mighty, where I have been an editor for the past five years.

One year ago, when the pandemic was just beginning in the United States, one of my good friends posted a social media message about supporting each other during what most people thought would be a strange, scary, but ultimately short period of our lives. Part of it went something like this:

My mask protects you. Your mask protects me.

It’s a nice sentiment. Wearing a few layers of cloth over your face may not help you much, but it helps to prevent other people from getting sick. It’s a kind, visible act we can all do to show we care during a difficult time, to protect others who are at risk even if we may think we would not become seriously ill. It seems so simple, right? How could people not do this? But we all know what happened.

“My mask protects you. Your mask protects me,” only works if the other person values your life enough to consider it worth protecting.

I’ve been horrified by the number of government officials and online commenters who have viewed the deaths of elderly and disabled people as “acceptable losses” in exchange for keeping non-essential gathering spaces open. My life, and the lives of people with high-risk conditions, are more important than your trip to Disneyland. Don’t you think we want to go to Disneyland too?

I’ve also noticed that able-bodied people often assume disabled people will be provided for in emergencies, and in general. They believe there are a lot of government programs and charities to help us, and that such programs are run well and meet our needs. This widespread — but utterly false — belief in a functioning safety net for “the vulnerable” gives people an excuse to behave selfishly while convincing themselves they’re not doing anything wrong. “Of course, there will be a plan to protect nursing home residents, and immune-suppressed people can stay home, so we can throw parties and go without masks if we don’t like them.”

In reality, the needs of people with disabilities are often disregarded, misunderstood, ignored, and even actively opposed. We have to fight for access to everything, and sometimes end up on multi-year waiting lists for housing assistance, in-home care, and other essential programs and services. We must battle with government and private insurance to get the mobility equipment we need. We are GPS tracked like criminals if we need personal care assistants, with “fraud prevention” used as an excuse. We often depend on programs with ridiculously complicated requirements, and one missed deadline, one paperwork error, one month where we made “too much money” can cost us everything.

I’ve written about these issues numerous times and certainly will again. And they are why I knew from the beginning that when this pandemic hit, I would be on my own. I knew Medicaid wouldn’t think about the needs of my personal care attendants or provide them with paid quarantine leave or proper PPE. I knew if I ever got COVID, I might be denied access to intensive care because someone might perceive my life as less valuable. I knew that my best chance of survival was to do whatever it took to not get sick — and that I couldn’t trust the government to protect me. I had to do it myself.

I need a mask that protects me, because I can’t even trust you to wear one at all.

One of my earliest realizations about the pandemic was that we were being given incomplete information on masks to serve an agenda. Due to a perceived shortage of N95 masks (the truth was more complicated) the CDC promoted cloth masks and actively told people not to buy respirators as they should be “reserved for healthcare workers.” Amazon pulled all their N95s from general sale and reserved them for healthcare use, but did not create any pathway for people with disabilities to obtain them for our caregivers. Nursing homes and other high-risk environments didn’t have access to them either — and hundreds of thousands of people with disabilities and seniors died who might have been saved.

I saw this coming. I’m not a psychic, I’m not a doctor — I just looked at the science. N95 masks filter 95% of particles from the air, including the respiratory droplets and aerosols from coughing and breathing that spread COVID-19. They form a seal around your nose and mouth area to keep unfiltered particles from leaking out. A surgical mask doesn’t do that. A cloth mask certainly won’t do that. So why did the government try to convince us they were good enough?

To be clear, I am about as pro-mask as you can get. Wearing a dish towel over your face is better than wearing no mask at all. Any face covering is going to reduce the volume of droplets and aerosols coming from a person and how far they spread. However, for those of us at high risk, those who can’t social distance because we have someone a few inches from our face lifting us out of bed or into the shower, cloth was never going to protect us.

Last May, I started a website, Pandemic Pal, to help people with and without disabilities find N95 masks and their international import equivalents like KN95 masks and KN94 masks. These respirators have been available all along if you knew where to look, so I made it easy for people to find them. I hope it did some good. I will keep the site online for the foreseeable future — please check it out and buy respirator masks if you don’t have some already.

Masks still matter — and for some of us, they’re never going away.

Although the pandemic is waning, we still need everyone to be cautious and protect themselves and others so we can truly put this terrible time behind us. And after a year of not getting even a cold, I plan to wear a mask in busy public places for at least the next several months, and keep a supply for flu season and in case of a future pandemic. I won’t be caught unprepared again.

It takes more than masks to survive a plague that doesn’t discriminate in a world that does.

I want people to understand what it takes to survive a pandemic with a disability. I am more fortunate than many disabled people because I had a support system in place before all this started. I have family and friends who love me, an accessible house, and personal care assistant services through Medicaid, but even with all that, the past year has been hell.

I couldn’t go to any indoor public places, except for medical appointments. I took walks around the neighborhood. I tried going to state and local parks, but they were too busy for me to feel safe. Travel is more than just fun to me, it’s key to my mental health after surviving an abusive relationship where I was trapped at home most of the time. So the past year of not leaving my house was a non-stop reminder of that trauma.

I struggled with depression, constant anxiety, and panic attacks, and lived in fear that one of my personal care assistants would get COVID and pass it to me. I had to put restrictions on my assistants’ lives outside of work, which stressed us all out. Each of them had at least one scare where they had to quarantine and get tested because they were exposed to COVID.

I went without care at times, sometimes going 12 hours without being able to use the bathroom — and then had to deal with my urologist wanting me to consider major surgery because my bladder isn’t emptying well enough. Well gee, I wonder why?! I developed my first UTI in almost three years after going without care because one assistant decided to be irresponsible and hang out with a friend who subsequently tested positive — just two weeks before she was scheduled to receive her first vaccine. (That person no longer works for me.)

With that said, my assistants’ other COVID exposures were unavoidable, and they often went out of their way to cover hours when someone couldn’t work while waiting for test results. There were times when the same assistant worked several days in a row, or fit a bit of help for me around their other commitments — and I’m extremely grateful.

For every single act of callousness and selfishness I’ve seen during the pandemic, I’ve witnessed or experienced twice as many acts of kindness. My friends and family have been very supportive and comforted me in my darkest moments. When a blizzard threatened to prevent me from getting to my second vaccine appointment, neighbors plowed my driveway.

I was taking some pictures to celebrate getting my second dose of the Moderna COVID-19 vaccine and the doggies decided to join the photo shoot!

Posted by Karin Willison on Monday, February 22, 2021

My vaccine protects me, and my vaccine protects you, but both depend on you getting vaccinated too.

I’m now fully vaccinated. It’s a huge weight off my shoulders, and I feel much safer, but not as safe as I thought I would. That’s partly because some of the people I care about most haven’t been able to get the vaccine yet. Either they don’t qualify yet, or it’s next to impossible to get an appointment, or their appointment is still weeks away. My dad and stepmom are vaccinated, but many of my friends, including those who are older and/or have disabilities, are still waiting. I worry about them — I can’t fully celebrate yet.

If you’ve read the rest of this article, you shouldn’t be surprised to learn that the vaccine rollout has been completely botched when it comes to people with disabilities. Horrified, perhaps, but not surprised. People with disabilities and serious health conditions were supposed to be group 1C, the third group to become eligible after healthcare workers (1A) and people in long-term care (1B). However, many states skipped over us entirely and just went by age, added barriers like requiring authorization from a doctor and a special registration link, or opened eligibility only to a small range of conditions and not the full list the CDC recommended. And the people who are falling through the cracks are not only disabled, but also disproportionately Black, LatinX, Asian, and/or low-income.

Activists in some states have pushed back against changes that made people with disabilities a lower priority for vaccines, and succeeded in some cases. But nationally, we needed a stronger response and more involvement BEFORE the vaccine was released to prevent these access barriers that are now costing precious time and lives.

I was in a gray area for group 1B — I receive long-term care, but in my home, not a nursing home. Did that count? I didn’t know, but it was worth taking the chance. After a year of my health deteriorating due to living in constant fear and frequently going without enough help, I registered and I got the vaccine. I’ve received both doses of the Moderna vaccine, and only had mild side effects — a slight sore arm after the first shot, and a very sore arm and one day of fatigue after the second shot.

My ability to resume some semblance of a normal life depends not only on getting vaccinated myself, but on other people getting the vaccine so variants don’t spread. So if you’ve been on the fence, please go get vaccinated — if not for yourself, for me and other people with disabilities who just want to start living our lives again.

I will add here, if you have a true medical reason why you cannot be vaccinated, which is unfortunately the case for people with certain chronic illnesses, I understand. You are the reason why it’s even more important for the rest of us to get vaccinated and not make excuses or buy into conspiracy theories and anti-science nonsense.

In my experience, the pandemic has served as a natural screening tool to find out who cares about others and who is selfish and only looking out for themselves. If I know someone has been conscientious about mask wearing and is pro-vaccine, my opinion of them goes up immediately. And of course, the opposite is true as well.

Surviving can bring out the best and the worst in us.

I’ve tried to advocate for the community over the past year through my writing and Pandemic Pal, and to support small businesses and artisans when shopping online, but I’ve largely been in survival mode. It can be difficult to help others when you’re worried about when you’ll be able to use the toilet or take a shower. Anytime I don’t have adequate or stable assistance, it causes tremendous anxiety and brings out the worst in me. That was true even before the pandemic, so imagine how stressed I have been for the past year.

I’ve had bad days when I said mean things to people I care about, and I’m so sorry if you were one of them. I’ve neglected some friends because I simply didn’t have the emotional capacity to interact with more people. If that included you, please know I still care about you, and given my mental state at times, it might have even been better for our friendship that I wasn’t in touch much.

I wish I could give this article the perfect ending, to say that I got through this horrible year and now everything is wonderful. But so much is unknown for me and everyone else right now. I feel safer now, but I have to find a new assistant to travel with me before I can get back out on the road. My plans to move have been delayed yet another year, and I still face barriers to achieving my goals.

I think about how long the vaccine will protect me and whether the world will get the pandemic under control before new variants put us in danger once again. I ask myself how I can cope with going back out into the world while wondering whether each person I encounter did their best to keep others safe, or if they contributed to the spread of the virus that killed so many people with disabilities and kept millions of us stuck at home. I want to believe in people and regain my faith in humanity. I hope we will all be able to rebuild trust in each other and create a better world. I’m ready to do my part. How about you?

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