TL;DR: This post isn’t about me.
The search for the coveted protection of the COVID-19 vaccine has been demoralizing for the disabled and chronically ill.
No, people with MS (and a bazillion other chronic conditions that disable people) are not prioritized in my state (as well as in other states).
This, even as science shows a real risk factor for people with progressive degenerative autoimmune conditions.
The culprit? The age barrier itself, meant in good faith to help the elderly but which has done more to shut out millions of younger people who are normally protected by the government.
It’s not an issue of availability, either. Where I live, one must suffer the gatekeeping of the Phasefinder Tool to get an appointment. But you cannot get a vaccine anywhere without an appointment unless a vaccine clinic has extra shots and not enough takers (that is how we ended up getting ours—a total crapshoot).
So the shots are there, and the people who are giving them are ready to do it, but at the higher levels of government, the needs of people with chronic illness and disability are being shoved to the back of the line.
The eligibility circle is vicious and discriminating in a way that has left many feeling utterly devalued by our society. Even when so many of us are big-time contributors to it.
Meanwhile, the healthy grandma who typically runs a couple of marathons a year is now posting pictures of her post-vaccine vacation on social media in one of the most insensitive acts of #OKBoomerism ever. This is not my expression of “vaccine envy,” it’s my expression of outrage over government-sanctioned ableism. Mind you, there are legal repercussions for what is happening (see below) at both the state and federal levels. Stay tuned as things develop.
So I’m getting my final vaccine today, so what’s the big deal? As long as I’m covered, I have no gripe, right?
Wrong. Read the first line of this blog post again. (Hat tip to Devin.)
Millions of people in the US alone live with chronic autoimmune disease and they are still unable to get a vaccine because they are not old enough.
We’re not talking about a handful of people here, either. Data from the National Institutes of Health in 2017:
Nearly 24 million Americans (more than seven percent of the population) are living with an autoimmune disease—and the prevalence is rising.
Cures are an illusion for people with chronic illness. These are diseases that we live with for our whole lives, taking expensive medications, jumping through major insurance hoops, and experiencing the same social, economic, and occupational setbacks as any other group protected by discrimination laws. Remember the Americans with Disabilities Act of 1990?
It bears repeating the language of the law here:
“The ADA is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.”
Despite that, people with disabilities and chronic illness (both considered high risk) have not been appropriately prioritized for COVID-19 vaccines in the US.
As the PhaseFinder tool puts it, “You do not qualify for the COVID-19 vaccine.”
At the risk of repeating myself: W.T.F.
If this enrages you as a healthy person, as much as it demoralizes those who are so utterly devalued that they aren’t even included in the language identifying people at high-risk for death from COVID-19, then it’s time to become an ally.
Listen, people fighting chronic illness and disability cannot and should not have to spend their limited time, resources, and energy educating healthy neighbors and policymakers on things like health privilege and ableism. Some of them are literally unable to feed themselves. Stop asking them to be circus-trained hero-worthy inspiration tokens and start helping them because you CAN.
I say this as someone with more time and energy than most of my peers, but my work is already out there in the service of education. I have no brainspace left for any more projects. #ThisIsMS
My life as a person with MS is already a daily project that will only be finished when I die.
Instead, it’s really up to healthy people to take the helm. Those who are looking to do something to help make the world a better place could really be valuable here, if they are willing to learn about health privilege and ableism, speak out against it, and push for change at every level.
Healthy people certainly benefit because (and this is crucial) nobody has a perfectly healthy, pain-free, able-bodied life from beginning to end. Most people will experience chronic illness or disabling injury before entering their senior years (when one might be able to laugh it all off as “aging”).
Good health is temporary, at best.
When your health eventually fails you in some way, you will want to know that the systems and services you presume are available for others will be there for you, too.
If self-interest drives you to help, I say GO FOR IT. Because when access and fairness are part of the healthcare landscape for the most compromised, then we will be able to say we have achieved equity.
But for now, we have not.
Want to become an ally?
Action items first
Check in with your chronic and disabled loved ones and ask them if they need your help locating a vaccine or scheduling an appointment or finding a way to a clinic to get a vaccine. If they need childcare to do this, help them out. If they need to pay an Uber, pony up if you can. Wear your mask with filter, wash your hands, and keep a safe distance. Keep your ear to the ground for “leftovers” and put them on your “hot list” in case you uncover any sudden openings where clinics have excess vaccine and need to put shots in arms.
Expand your understanding
You can start by reading these recent articles about discriminatory COVID-19 vaccine access policies as well as how basing priorities solely on age has put so many at risk. Also included are some links to litigation, advocacy, and information about overall vaccine distribution inequity (examining intersections with race and economics).
And don’t stop here, keep reading everything you can find on the topic. If you’re a digital activist, you know what to do: find the people in charge, write letters, sign petitions, make phone calls. Even these things are difficult for people with chronic illness or disability.
- FEBRUARY 1 (KQED): ‘So Angry, So Scared’: California COVID-19 Vaccine Rollout Change Leaves Disabled People Behind, Say Advocates
- FEBRUARY 10 (Ms. Magazine): #HighRiskCA Movement Calls Out Ableism in Vaccine Distribution: “High-Risk is High-Risk”
- FEBRUARY 12 (American Medical Association): Prioritizing Equity video series: COVID-19 & disability
- FEBRUARY 25 (The CT Mirror): Disability Rights CT files federal complaint over age-based vaccine rollout
- FEBRUARY 25 (The Lily): This women-made tool could help get more disabled people vaccinated: States aren’t prioritizing the disabled community, advocates say
- FEBRUARY 25 (WKOW): ‘It’s really tough’: Disability advocates frustrated over vaccine access
- MARCH 1 (Disability Visibility): 2/28 Joint Letter to Community Vaccine Advisory Committee, CA Department of Health
- MARCH 1 (Kaiser Family Foundation): COVID-19 Vaccine Access for People with Disabilities
- MARCH 2 (Government Technology Emergency Management): Vaccine Websites Violate Disability Laws, Create Inequality
- MARCH 2 (Medical XPress): COVID vaccine websites violate disability laws, create inequity for the blind
- MARCH 2 (NorthJersey.com): ‘Persistent gap’ nationwide in COVID plans for people with disabilities, advocates say
- MARCH 4 (12 News Arizona): Advocates call on Arizona to prioritize people with disabilities in COVID-19 vaccine rollout
- MARCH 9 (The Baltimore Sun): Maryland organization that supports people with disabilities sues five counties and Baltimore City, alleging vaccine discrimination
- MARCH 12 (VeryWellHealth): People with Disabilities Are Experiencing Barriers to Covid-19 Vaccination
- MARCH 15 (Century Foundation): The Path Toward Equity in COVID-19 Vaccination
- MARCH 17 (US News & World Report): U.S. Falling Short on Vaccine Equity
- MARCH 18 (Bloomberg Equality): Vaccine Rollout Leaves Behind the Blind, Paralyzed, Autistic
- MARCH 22 (WKU-NPR): Disability Rights Advocates Question Kentucky Policy On COVID Vaccines
- MARCH 23 (Disability Scoop): Folks With Disabilities Left Behind In Push To Overcome Pandemic
- BONUS: Pre-Pandemic eye opener about what it means to be young and sick or disabled: JUNE 5, 2019 (Patients Rising): Young adults with chronic illness: The Forgotten Ones