Columnist Joanna Buoniconti: Trusting others is not a luxury for disabled

  • Joanna Buoniconti

Published: 3/2/2021 9:41:08 AM

While scrolling through various news sites late last fall, there was one article in the New York Times that deeply disturbed me. The headline read “Developmental Disabilities Heighten Risk of Covid Death.”

The article itself went on to further haunt me with the startling statistic mentioned in the first paragraph, that individuals who have developmental and intellectual disorders are “three times more likely to die if they have COVID-19.” Upon first reading it, that statistic was downright mortifying to me; but as it continued to stay in the back of my mind during the last few months, it began to make more and more sense to me.

It is not a secret that people with any type of severe physical or mental disability, who have to rely on caregivers consistently, are among the most vulnerable members of the population outside of a pandemic — but with that now being a factor, our risk of exposure to the virus is exponentially elevated. And consequently, due to our inability to effectively fight the virus, our mortality rate with it is higher.

Last year, my pulmonary doctor speculated that I had COVID-19. One of my nurses got extremely sick around the beginning of February 2020 and was out for three weeks, and when she came back, about a week later I began developing symptoms of a cold.

The telltale heaviness in the chest, combined with the loss of smell, all became premonitions of what I would come to endure during the following month, as I went through endless 24-hour cycles of repeated medical routines in vain efforts to keep the torrents of mucus out of my airway.

To preface this, due to my innate muscle weakness, it is an impossible for me to clear the excess mucus that naturally accumulates in everyone’s lungs when they get sick. And if the mucus lingers in my lungs for too long it can lead to pneumonia, which can lead to a stay in the intensive care unit for a couple weeks. In short, catching a common cold, much less one as debilitating as COVID, for me, can result in a situation that is nothing shy of catastrophic.

This specific illness was one of the most incredibly physically and mentally taxing illnesses that I have lived through. And it was one that was only resolved through several rounds of steroids and antibiotics. Fast forward to last June. Ahead of a day-stay procedure I was tested for the antibodies for COVID-19, which did come back negative.

However, upon discussing it further with my doctors, after the results came back it is extremely likely that I did have COVID, but because I did not have the test immediately after recovering, my antibodies for it were undetectable.

Similar to many in situations paralleling mine, I’ve learned time and again how extremely easy it is to take the ability to breathe clearly and deeply for granted — until the day breathing is no longer easy. Instead, it becomes a laborious exertion due to the encapsulated mucus clogging lung tissue and painfully ricocheting amongst the hollows, with every breath.

I consider myself extremely fortunate not to have had to live with the conscious and crippling anxiety of having to rely on caregivers during this time, but the majority do not have that option.

I spoke with Kate, a friend of mine who shares the same disability as I do and who also works in disability advocacy. When I broached this subject with her, she explained that due to her wife’s inability to care for her completely independently, they have had to rely on two outside caregivers — which has been extremely nerve-wracking for everyone involved.

“It was stressful to ask them to take on so many new requirements like changing clothes and wearing masks and washing hands and spraying everything they touch in a shift with Lysol,” she says. “I felt guilty micromanaging hand washing and not touching masks and leaving your belongings in the car. Not touching their phones stressed them out which stressed me out. It’s hard to tell someone who trusts you and whom you trust that they are a risk to you.”

She says, “I also found the dynamic of monitoring (their) exposure outside of work very tension-producing because it represents a boundary invasion.”

While it may seem excessive to ask caregivers to abide by these precautions, they have to in many ways abide by a “new standard” in order to keep a compromised individual safe. And you still have to hope for the best and that you put your faith in trustworthy people. Unfortunately, Kate had to deal with that firsthand when one of her caregivers went on vacation, lied to her about being cautious, caught COVID and then exposed Kate as well as her wife.

Granted, most caregivers don’t get paid a lot and they rely on the income; therefore, having to go without it can be detrimental. But in a year of so much undoing, no one’s life should be put into jeopardy because of the carelessness of others.

Joanna Buoniconti is an English and journalism major at the University of Massachusetts Amherst.

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