The narratives that dominate our media landscape are about us but not by us. This profound disconnect continues to inflict harm on the disabled community in palpable ways. As someone who has dealt with chronic illness for more than a decade, the reduction of protections reinforces that my life does not matter, that disabled lives do not matter, that we are all disposable.
The disability community has been screaming about covid’s mass disabling event since the beginning of the pandemic – they warned the world about the dangers, and no one listened.
One of my autoimmune diseases severely affects my muscles, which become stiff and painful during a flare-up and limit my ability to walk. Mornings are, without question, harder on me. However, because local policy lifted mask mandates, I can no longer shop when it is best for my body to do so. I must go early in the mornings in order to limit my risk of exposure. If I am having a good day and have managed not to pull a back muscle while carrying my groceries from my car, I nearly collapse from exhaustion and pain by the time I open the front door. Part of me feels like I just conquered the world, but I sigh because I know what the rest of the day has in store for me.
I know what it looks and feels like to navigate a health care system that would rather label you with “anxiety” than getting to the root of your health issues. Those now suffering from long covid are propelled into a system that crumples, shuffles, and discards people like old newspapers. This type of experience I do not wish on anyone, including those actively working against measures to protect people from this treacherous virus.
My own family mocked my illness for years. I eventually stopped going to family functions and avoided showing any pain or sickness I was experiencing around them. Not only did my own family not believe that I was sick, they mocked and made fun of me for it. Their ableist response assigned my illness to a personal weakness. I was not eating the right foods, doing the right exercises, and taking the right supplements. I internalized these notions, so much so, that I started to downplay the actual progression of my illness. Had it not been for my daughter who witnessed my physical deterioration, I could have ended up much worse.
In my case, it took almost 13 years, several specialists, hundreds of tests, and thousands of dollars to receive my diagnosis. I know I am one of the lucky ones. Many of us live with debilitating and painful conditions that go undertreated, ignored, and undiagnosed by medical professionals.
My immune system is consistently compromised.
So when people argue that masks are an infringement of their freedoms – think about what that says to people like me.
All I am asking is that you see me as a person.
#DisabledLivesMatter -Imani Barbarin
Challenge The Narrative 