Note: this post was originally written as an Op-Ed submission on January 9th. Since this was first written, disability advocates from various organizations have participated in a meeting with the CDC director – including The Arc of the United States, Little Lobbyists, American Association for People with Disabilities, the Autistic Self-Advocacy Network, the Epilepsy Foundation, and many others. There is still work to be done, and many are hopeful that the CDC will follow through with things discussed during the meeting. Policy changes, a major shift in attitudes regarding disability, and guidelines that are more accessible and proactive to protect people with disabilities – these are all necessary for the well-being of disabled individuals during the pandemic.
Welcome to 2022!
Or as we call it here, year three of the pandemic.
Throughout this pandemic, many of us with disabilities have had our routines thrown upside down – without little reprieve. Some have experienced much longer wait times to see specialists, while others have had to wait more than eight months for necessary surgeries.
Many people who receive home and community-based services have been impacted due to our support staff becoming ill from COVID-19. And for many of us who are immunocompromised or have significant chronic illnesses, we have no choice but to stay home and simply hope for the best.
In many ways, a group that has historically been excluded from society has been pushed further along the margins. We’ve seen this regularly since 2020: struggles with testing and enacting appropriate measures in long-term care facilities such as group homes and residential programs, guidelines that fail to consider people with disabilities, and even the vaccine rollout process. In many states, people with disabilities and those who were high-risk were excluded.
Tennessee, to its credit, led the way as the first state to prioritize people with intellectual and developmental disabilities in its vaccination efforts.
However, there is one glaringly obvious point yet to be made here – how attitudes toward disability shape policy, and its effect on how the pandemic is managed.
From day one to now, people with disabilities have been seen by many as a second thought – expendable.
On January 7th, 2022, CDC Director Rochelle Walensky, MD, MPH, stated in an interview that “the overwhelming number of deaths, over 75%, occurred in people who had at least 4 comorbidities. …these are people who were unwell to begin with and yes, really encouraging news in the context of Omicron.”
As someone with several co-occurring conditions, this certainly doesn’t feel very encouraging – and I’m far from alone. While the interview clip itself was edited, the full comment in context is still concerning.
26 percent of American adults have at least one disability; this is 61 million people – each individual with their own experiences and lives that are valuable.
To say that it’s “encouraging news” that the virus only kills people with disabilities – people like me? It isn’t an exaggeration to say this borders on the concept of eugenics.
One of the CDC goals is listed on their website to “promote the health and full participation in society by people with disabilities across the lifespan.”
Unfortunately, this goal cannot logically be met if we are no longer alive.
The CDC director is also mistaken for another reason. It’s not just deaths that we should be concerned about. Even “mild” infections of COVID-19 can lead to significant and disabling complications.
Some individuals develop autoimmune or chronic symptoms that have been nicknamed “Long-COVID,” with conditions such as Postural Orthostatic Tachycardia Syndrome (also known as POTS, a form of Dysautonomia). Vanderbilt University Medical Center has even created a Post-Acute COVID Clinic to address this.
By downplaying COVID-19 because it’s only deadly to some people, government officials are failing millions of Americans. Saying that it’s “encouraging” tells us that our lives are seen as expendable and not worth living – simply because we have a disability.
It’s putting people’s lives at risk for the sake of political ratings and economic appearances.
COVID-19 does not exist through merely a political or economical lens. People with disabilities deserve better than this.
Everyone deserves better than this.
Sources:
- Following Meeting With Dr. Rochelle Walensky, Disability Rights Advocates Release Statement and Readout
- Tennessee was First State to Prioritize Individuals with Intellectual and Developmental Disabilities in Vaccine Distribution
- Letter to Dr. Walensky from various disability rights organizations and agencies (includes reference to unedited, full statement)
- Disability Impacts All of Us (CDC Infographic)
- CDC and Disability and Health
- Long-COVID postural tachycardia syndrome: an American Autonomic Society statement
Just Keep Stimming! 