Letters to the Editor: ‘We matter’: Readers with disabilities feel endangered by state vaccine guidelines

As I wrote on this page last week, since Los Angeles County began its mass vaccine rollout, seniors have been writing letters to The Times expressing their frustration and fear over being unable to schedule vaccination appointments. Those letters are still coming in, but increasingly we’re also hearing from older readers who were able to get their shots and were generally pleased with their experiences.

Now, we’re hearing about another group that feels neglected by the state: readers who are not 65 or older and are therefore not considered a priority for vaccination, but who have conditions that put them at grave risk. They’re writing to express their fear and anger over age-based vaccine prioritization.

Harold T. Fujita of Glendora writes about two of his children:

Two of my grown sons, Cameron and Christopher, are severely autistic. They are both nonverbal and live in a group home. After Christmas, Cameron contracted COVID-19; fortunately, he recovered and was recently released from quarantine, which was very welcome because he could not understand why he was being confined to his room.

Both Christopher and Cameron have “tactile defensiveness” and will not wear face covering. They require daily assistance with things such as hygiene that makes it impossible to maintain physical distance.

It is critical that Christopher be vaccinated as soon as possible. Christopher is neurologically fragile. When he was a teenager, he began having grand mal seizures.

I can understand why Gov. Gavin Newsom is leaning toward prioritizing vaccinations based on age, but if people like Christopher have to wait until summer for those 65 and older to be vaccinated, it could be a death sentence for them. Individuals with intellectual and developmental disabilities need to be prioritized appropriately and receive the vaccine as soon as possible.

Adam Byers of Los Angeles writes of being ‘horrified’:

I was born with spinal muscular atrophy, a rare neuromuscular disorder that results in weak muscles, including ones affecting the lungs. I am only 32 years old, but I am distinctly high-risk for the most severe COVID-19 infections.

All of this was running through my mind when Newsom proposed switching to a purely age-based system that would prioritize vaccinating healthy young adults over those with severe neuromuscular disorders like mine. I was horrified.

Tackling COVID-19 has been one of the most challenging problems humanity has ever faced. However, trying to simplify vaccination by pushing disabled Californians down in the priority list is a bafflingly poor way to address whatever issues Newsom is facing.

Newsom has spoken about economic and racial equity in vaccination. Disabled Californians are more likely to be low-income, and severe disability does not discriminate based on race. Excluding disabled Californians from the vaccine distribution plan only exacerbates inequality across multiple intersections.

Angela Johnson of Poway addresses Newsom directly:

Please, Gov. Newsom, help the Californians under age 65 who are at high risk of dying due to COVID-19. We matter.

We contribute richly to the fabric and diversity of our state. We have overcome obstacles that would crush most people. Unfortunately, we cannot overcome COVID-19.

Our deaths due to COVID-19 are often explained in a way that makes much of society feel safer. We are told that most people who died had “underlying conditions.” What the chronically ill hear is that this virus is killing those of us who are already sick. It’s not OK.

In my case, multiple chronic health conditions have taken away my ability to work while in the prime of my life. However, I have not lost my ability to love my family and care for my children. If I were to catch COVID-19, I would die. My family would be destroyed. My body cannot fight such an infection.

By not prioritizing us, California is saying that the lives of the chronically ill simply do not matter. California is better than that. Please help us, Governor.