Guest columnist Joanna Buoniconti: No return to normal for the most vulnerable

The distribution of the COVID-19 vaccines has provided a much-needed beacon of hope for many as this year comes to a close and we all, collectively, come to terms with what will be a new normal. But for the disabled population, that glimmer of hope remains too far in the distance for us to even see clearly. As most of us have been forced to bear the consequences of the pandemic alone and in silence, we also have to mentally prepare ourselves for the fact that unlike most, our “new normal” will bear little to no resemblance to our lives prior to the onset of the pandemic. At least, not for a long time.

It is a well-known fact that within society the disabled population is amongst society’s most vulnerable. Nonetheless, even during a global pandemic when we are the ones most severely affected, our needs continue to be ignored and put on the back burner. I was one of many to experience the brunt of this firsthand earlier this spring when I was denied the ability to receive a dosage of life-saving medication due to COVID-19 restrictions.

The medication was the one I began receiving in the fall of 2018 to slow the progression of my neuromuscular disease. And in order to maintain the positive results from it, my mom and I have to make the two-hour-long trek to Boston Children’s Hospital three times a year where I have been receiving the majority of my care since I was 9 months old. It’s never less than an arduous day. It typically begins with a draining assessment of any strength that I may have gained, followed by a seemingly endless amount of poking and prodding in order to deliver the medication into my cerebral spinal cortex. But there’s never any doubt in my mind that all the pain to get the medication into my body is worth it, when I feel the bursts of energy flooding my veins and sluggish extremities in the hours afterward.

I was due to receive an injection in the middle of April, during the height of the first wave of the pandemic. Approximately a week before my procedure, my mom received the phone call that we had both been dreading, telling us that my procedure was canceled. I had been mentally preparing myself for the phone call to come. Governor Baker had recently issued an order to temporarily stop non-emergency medical procedures in the state. But nothing could prepare me for the lingering fear that would take hold over the next two months while I braced myself for the possibility that I could lose strength as a result of it.

Fortunately, I was able to receive my injection at the beginning of June and sustained no dramatic declines in strength during the waiting period. But I was lucky. In addition to having to isolate for months on end, not being able to go to doctor’s appointments or undergo necessary procedures are all unnecessary struggles that most disabled people have been forced to encounter during this pandemic, while the masses seem to have little to no regard for our quality of life. These struggles are not new, but they are becoming an exhausting feat for many to shoulder.

Sianna LaPointe, a member of the Alliance Against Ableism group and an undergraduate student at UMass Amherst who is diagnosed with multiple disabilities, expresses her disappointment about the fact that issues concerning disabled individuals are consistently overlooked.

“Even in hospitals and clinics, where we should feel safe, our needs are being ignored because doctors are more concerned with COVID. I have many doctor appointments [which] I desperately need to go to, some of which took me months to get. But if I have any COVID symptoms, I’m not allowed to go to those doctor’s visits,” LaPointe says.

Even with vaccines being distributed and the promise of cases of the virus diminishing on the horizon, these threats for disabled individuals will remain for the foreseeable future. I have been conditioned since I was a toddler to be hyper-aware of germs as dangerous to my physical well-being because of the carelessness of others. My fears are echoed across the disabled population. Catherine McEachern, a graduate student at UMass Amherst who has an autoimmune disorder, explains that her ability to re-integrate into a semblance of normalcy depends on the general population.

“I’m hoping I am able to get the vaccine, but I do worry that my autoimmune disorder might make me unable to handle one. This is why we need every single healthy person to get the vaccine. Those of us that may not be able to get the vaccine rely on the majority of the population to be vaccinated for our safety,” McEachern says.

While it is optimistic thinking to imagine that everyone will be willing to get vaccinated and keep following COVID safety protocols, we need people to first understand that disabled or not, we are human too and want to get back to living life as much as everyone else does.

This issue, at its heart, is not political but rather a gesture of kindness to preserve the health of those around you.