by Allison Cameron Gray

On March 15, people with disabilities will finally have priority access to the COVID-19 vaccine. Governor Newsom announced the new policy at a vaccination site in San Francisco after being roundly criticized by many in the disability community, who felt they were being deliberately overlooked.

A young blonde woman wearing a purple shirt smile at the camera.

Newsom’s decision revises last month’s change in vaccine eligibility to age-based tiers. People over 16 with Down syndrome and other intellectual and developmental disabilities whose life or ongoing care is threatened by COVID will now be prioritized. Eligibility will also be extended to people who are severely affected or immunocompromised by cancer or an organ transplant; pregnant women; and people with chronic pulmonary disease, sickle cell disease, heart conditions, severe obesity, type 2 diabetes, or chronic kidney disease of Stage 4 or higher.

While this is good and welcome news, I’m still skeptical. I’ll believe it when I actually have my vaccine appointment.

As a young woman with cerebral palsy, I’m viewed by some people as severely disabled and by others as moderately impaired. I’m both too disabled and not disabled enough. Cerebral palsy places me in a physically vulnerable category, but other than that, I’m perfectly healthy. I am 32 years old with no other underlying health conditions; statistics for recovery are in my favor. Of course, we don’t know the impact COVID might have on my muscles — no one knows exactly how COVID will affect them, disabled or not. A friend of mine with cerebral palsy had COVID and recovered easily. Another friend, without any preexisting conditions, still can’t speak, can barely walk around her apartment, and can’t lift one pound a year later.

I rely on regular physical therapy to maintain my ability to walk. During the first stay-at-home order, I didn’t have access to therapy because the clinic was closed. Without it, I started to fall more easily. This is not a new experience for me. When my thyroid becomes hyperactive, my muscle strength vanishes; both times this has happened, I’ve had to relearn to walk. If an overactive thyroid can cause that much damage to my body, I worry about what COVID might do.

The Centers for Disease Control states that people with physical challenges have an increased risk of contracting COVID because we rely on others for our daily support needs. Surely this was behind California’s decision to prioritize the vaccine for family and support staff of people with disabilities. Many people with disabilities require the daily help of assistants to keep living and working independently. For example, I require someone to prepare my meals and feed me. I am unable to put a mask on without assistance. But until I am able to receive the vaccine, I’m not comfortable allowing my assistants to return to the house I share with my mom. Unfortunately, this means she will have to continue supporting me on her own.

I’m grateful my mom was able to receive the vaccine, especially because she has asthma and scar tissue on her lungs. But many parents and caregivers of people with disabilities are still being turned away. And it doesn’t make sense to vaccinate everyone in a household except for the person who is at the highest risk. When people under 16 are able to get the vaccine, will those children with disabilities who can safely get it also be prioritized?

Oregon and Tennessee had already prioritized people with disabilities even if they live at home, as long as they receive in-home support services. As Tennessee’s Commissioner of the Department of Intellectual and Developmental Disabilities told WKRN, “The death rate [of people with intellectual and developmental disabilities] is three times as high in comparison to a traditional community. That really showed us the urgency around what our strategy really needed to look like to make sure that we continue to fight for Tennesseans with disabilities.” The Tennessee commissioner understands this well: he has a 14-year-old daughter with cerebral palsy.

While people without disabilities complain about COVID fatigue, my population has it also. We miss medical appointments out of fear. We worry about the increased cost of groceries while our SSI has remained the same. We struggle with depression from isolation. We worry that it will never be safe to return to work. We live with the pain that we are devalued and overlooked.

And while we cannot physically protest during a pandemic, our emails and phone calls to our representatives, and social media campaigns like #HighRiskCA, paid off. Allies such as the State Council on Developmental Disabilities (SCDD), Disability Voices United, and the Arc of California advocated for us since the beginning. But despite the promise of our new eligibility, we’re still worried. Aside from Down syndrome, the policy does not specify which disabilities qualify for vaccine priority; it also requires that we show proof of disability, but does not explain what that means. As disability rights activist Alice Wong, who uses a wheelchair and a ventilator (and is the creator of #HighRiskCA), told the LA Times, “There are lots of people who don’t have a primary care provider [to provide documentation of an eligible disability]. We don’t need more hurdles.” Bioethicist Dr. Alyssa Burgart put it this way: “We need to be careful about not splitting hairs about who’s disabled enough to get vaccinated. It’s so easy to show what your age is. But there is immense variety in the type of disability that can place you at higher risk from COVID.”

I hope that despite ongoing vaccine shortages, California will be able to get the vaccine as quickly as possible to people with disabilities and their caregivers. It will give us far more than peace of mind.

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