Disability during a Pandemic

May be an image of 1 person and text that says 'The true measure of any society can be found in how it treats its most vulnerable members. Mahatma Gandhi'

My friend Crystal Evans wrote a personal account of what it is like to have a disability during a pandemic. The notion that has been pushed that we can easily protect those at high risk of disease or with complex medical needs is simply a lie. Our country has not been able to do that with healthy people. How on earth does anyone who supports the Great Barrington Declaration think we can do that well with those who need support?

Here are Crystal’s words.

As a medically complex individual who relies on medical supplies and the healthcare system to stay alive, I live a side of the pandemic many of you have the privilege NOT to experience.

I have a genetic neuromuscular disease, and for me, infections can result in disease progression. In December 2015, I got what would have been “just a cold” for many – which turned into bronchitis, but because I had underlying neuromuscular disease, I lost remaining respiratory function and have been ventilator dependent ever since. The first 4 years post-tracheostomy were generally manageable, but when COVID hit, the dynamics of being medically complex changed everything.

Since April 2020, I’ve been dealing with ventilator supply shortages and medical supply rationing. I’ve dealt with painful airway infections as a result of prolonged use of ventilator supplies, and have spent months to navigate health insurance battles for covering alternative solutions as supplies are scarce. Tracheostomy tubes are now among medical supplies in a shortage. And tracheostomy groups are full of younger people ending up trached after long ICU stays with COVID.

I’ve spent the past month with barely any home care coverage because everyone is ending up quarantined after getting exposed to COVID. And too many people currently need COVID tests for PCAs to quickly access appointments for them. Many of my friends are in perpetual home care coverage crisis too – having to weigh the risks of exposure vs lack of assistance for basic Activities of Daily Living.

Please don’t assume that at-risk people can simply “stay home” to avoid the virus. While you’re out living your life, you’re also risking exposing healthcare workers many of us depend on. I haven’t left my house at all in over 6 weeks. Yet I’ve had exposures in my home by healthcare workers, without actually going anywhere.

Managing our underlying conditions is harder now than ever. The hospitals we used to turn to when we were sick have become some of the least safe environments for us. As a vent user, the unit that has nurses trained to care for me has become a COVID unit. As a result, many of us need to manage care in our homes for issues that was previously hospital-level care. I had sepsis 3 times early in the pandemic due to supply chain issues, but was the one managing my own round-the-clock IV meds, and medical needs. I’ve drawn my own blood dozens of times in the past 2 years to pass off to community paramedicine to take it to the lab.

Many of my friends with underlying conditions can’t get outpatient care or VNA care for basic disease management because the healthcare system is overwhelmed. I’ve also seen several friends with disabilities die directly because of these home care coverage shortages.

The compassion America had for frontline workers in Spring 2020 is long gone. People who don’t feel they are at risk have long moved on with their lives, with little regard to what the healthcare workers continue to be up against.

I’ve seen the incredible amounts of stress home care nurses and VNA therapists are under throughout the pandemic – trying to keep those who are at-risk stable in the community to protect us, and to save those hospital beds for patients who desperately need them. Home Care Agencies and VNAs are short staffed, the workers are exhausted, and at multiple points of the pandemic several have been in tears in my home.

Some of the ongoing nursing staffing issues I’ve dealt with stem from nurses getting long COVID, leaving them unable to work or having to reduce their hours. I’ve also seen 2 of my home care nurses lose their husbands to COVID.’

While healthy people might see increases in local case numbers, but not feel personally impacted or assume it’s “fear mongering,” those of us who are high-risk depend on that local data as it may mean re-thinking basic daily healthcare.

For us to stay healthy during COVID surges might mean eliminating certain services to reduce our contacts – like physical therapy, homemaking, reducing PCA coverage, avoiding in-person errands altogether, and only accessing care via telemedicine. Those of us like myself with inborn errors of metabolism may have to re-think meal prep and how to access medical diets if our kitchens are inaccessible.

I am one of the 19% of American’s living with a disability. While my ventilator and wheelchair make my disability visible, 10% of American’s are living with an invisible disability, and many of these individuals are also immunocompromised or high-risk with COVID. You can’t tell just by looking at someone what their risk factors are. We are surrounded by high-risk individuals in our community, as well as those who live with or care for high risk family members. They are people of all ages. – our children’s classmates, our colleagues, our neighbors, fellow customers in local businesses.

Not every high risk individual can be effectively vaccinated – some immunocompromised people may never develop antibodies post-vaccination. Others may have drug reactions or other risks with vaccination due to their underlying disability. Dec 8 the FDA announced EvuShield, an antibody for high-risk individuals, but last week stated that the US Government only purchased enough for 10% of the 7 million adults in the US who are eligible.

Over the past 2 years, the COVID-19 pandemic has made it clear how devalued the lives of seniors and people with disabilities are by many in our communities. To dismiss the virus as “only people who are 65+ or with underlying conditions are at risk” is incredibly ableist. We are people too. We have jobs, we have families, we have dreams, accomplishments, and goals – just like anyone else. Our age or disability shouldn’t make us worth less than any other person.

Please remember – statistics aren’t just statistics. There is a person behind each case, a family behind each death, a life changed by each Long-COVID infection. But empathy seems to be gone, because the people statistically impacted the most by the pandemic are disabled, elderly and/or people of color. Too many people are more focused on their “rights” and their “freedom” no matter how it affects those in their community.

When you blow off the virus as “just a cold” or “the flu” it’s dismissive to the families of nearly 850,000 American’s who have died from the virus, to the thousands who have spent weeks in the ICU, as well as those who are living with Long-COVID. It shouldn’t matter what the person’s age was, or if they had underlying conditions. They are people who have lived in our community, whose lives matter.

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