I put my life on hold.
Projects, personal milestones, planned events and goals were all halted. This is our reality — mine and those in the disabled community.
Many of us have been homebound for a year. We went into lockdown two weeks before the state of Idaho officially did. The governor’s stay-at-home order lasted five weeks; for those of us who began sheltering in place upon the announcement of Idaho’s first COVID-19 case, we are on our 55th week. For the disabled and chronically ill, our neighbors have failed us, the health care system has failed us and the state of Idaho has failed us.
In the dark days of July when most states watched COVID cases, hospitalizations and deaths steadily climb, the nation quietly marked an important anniversary — the 30th anniversary of the Americans with Disabilities Act. Meaningful celebrations were sidelined by a once in a century pandemic that was disproportionately impacting the very community the ADA was designed to protect. For all the progress since the ADA — equity in housing, employment, transportation, education and health care—much of it felt as if it was thrown out the window the second states deemed those with disabilities as non-essential. The lack of prioritization followed.
According to the Centers for Disease Control and Prevention’s National Center on Birth Defects and Developmental Disabilities, 23.1% of adults in Idaho have a disability. These are disabilities related to mobility, cognition, sight, hearing, independent living or self-care. Among all disability types, 36% have high blood pressure and 38.5% are obese — two key underlying conditions the CDC says may increase the likelihood of a person contracting severe or fatal COVID. And yet prior to March 29, those under 45 with underlying conditions who do not reside in long-term care facilities remained unvaccinated.
With Gov. Brad Little’s decision to move up eligibility for all Idahoans 16+, some adults younger than 45 with underlying conditions were not eligible until March 29, only a week before the general population. In several parts of the state, public health districts did open up vaccination to all Idahoans earlier than that.
Disability is no respecter of age. While disabled Idahoans are disproportionately 55+, plenty of adults with Down syndrome, cerebral palsy, diabetes, spinal cord injuries, autoimmune disorders, and in my case, chronic pain and illness treated with corticosteroids and other immune-suppressing medications, fall into the 16-35 age group. The Idaho Department of Health and Welfare estimates that approximately 300,000 Idahoans are 18-49 with one or more underlying conditions.
You’ll notice I use ‘disability’ and ‘underlying condition’ interchangeably. Let’s be clear what we are talking about. Something crucially missing in the discussion of disability and risk is in the language itself, says disability activist Alice Wong. The language we use matters. ‘Pre-existing’ or ‘underlying condition’ and ‘special needs’ are ubiquitous terms in all COVID reporting. While the latter is an outdated expression, you have no doubt heard it over the last year. Wong contends there can never be equity in the system if we are afraid to call these things what they are — disability.
The Idaho government failed the disabled in its public language and action. It isn’t that an entire group of high-risk adults will be getting vaccinated at the same time as young, healthy Idahoans, many of them who have resumed their lives, continued working and not always behaved as if there is a public health crisis. All things being fair, those things should matter. It is that Idaho never prioritized the disabled.
Older adults were prioritized. Those living in long-term care facilities were. Caregivers in various other settings were prioritized for vaccination, but their clients under 55 living in certified family homes, some group homes depending on definition and health district, and arrangements with one or two roommates and around the clock care were not. Those living independently were considered less likely to contract the virus and thus not a priority for vaccination. My intellectually disabled sister who receives 24/7 care from providers who come into her home — providers who were vaccinated early on while she was not — was failed.
The governor’s COVID-19 Vaccine Advisory Committee met for the first time Oct. 23. It was not until March 5 that they debated eligibility for the disabled — the physically and intellectually disabled. It is unacceptable that it took until March for the committee to discuss Idahoans who “have trouble understanding information or practicing preventative measures, such as hand washing and social distancing” and “people who may not be able to communicate symptoms of illness.”
We have known since the emergence of the coronavirus that a segment of the adult population of the state could not take measures to mitigate risk to themselves and those around them, but we didn’t think this might be something to discuss at length and that vaccination should be a priority? My intellectually disabled brother who needs prompting to wash his hands after using the bathroom and can barely keep glasses on his face, much less a mask, was failed.
There are other failures in the vaccination of the disabled community. The state has not worked hard enough to make information accessible to all. Having an ASL interpreter at press conferences does not negate the need for conversations about accessible material about the virus and vaccination.
Without a state-run system, vaccination appointments have been a free-for-all. The disabled are less likely to have the tools they would need to make an appointment for themselves. If they can’t understand what a virus is or the necessity of a vaccine, they will need care providers who have the time and resources to take vaccination seriously.
A large number of library computer users are disabled who do not have internet at home. Libraries have been closed for in-person use for much of the pandemic. How will they make online appointments or find out where to be vaccinated? Transportation is also a major hurdle, in rural Idaho especially. Even larger cities like Nampa struggle to meet the public transportation needs of the disabled. I had all of the tools available to me, and it still took dozens of phone calls all around the Treasure Valley to pharmacies asking to be put on no-waste waitlists. This process has failed many.
The vaccine committee was not the only part of the government that failed to appreciate the risks to the disabled. It took a lawsuit by legislators, one of them disabled, for Republican leadership to recognize that legislative processes were putting members with heightened risk for contracting severe disease in a tough position. And yet still a mask is not required inside our Statehouse. As a disabled Idahoan, it would be against my best interest to walk into that building because it is too much for a group of adults to respect other adults enough to wear masks.
Throughout the pandemic there have been significant failures in the way we address the needs of all Idahoans, but particularly the disabled. Addressing future equity is going to require looking at every part of our response to COVID that failed. We cannot have that discussion without first recognizing that we failed the disability community.
Correction: This article has been updated to reflect the date some adults younger than 45 with underlying conditions became eligible for the vaccine: March 29.