The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19.
My Dearest Friends,
We mustn’t let this be forgotten-
the time the world gained
Perspective on a small portion
of our struggles. We must
make sure that this moment
goes down in history so
that we can build a better world
a more accessible world
a world for everyone
a world for us.
I have extreme fatigue. At its worst, I am unable to walk up the stairs, talk, or write. I have been to five doctors already, seeking treatment only to be told not to worry because, “It’s probably just your C-PTSD,” or, more annoyingly, “Lots of women have fatigue.” Oh really? I can’t walk up the stairs and you’re going to tell me that it’s a side effect of being a woman? I was told I should just live with it, pace myself, and try to stop getting so stressed out about everything. None of this helped me cope. None of this taught me how to be when your body is slowly betraying you.
In March of 2020, I felt the ramifications of COVID-19 as every exhibition, public speaking gig, and doctor appointment was canceled for the foreseeable future. My local clinic was only taking emergency cases. There was no need to see a patient complaining of chronic fatigue if the symptoms would surely be there after the pandemic. Any chance I had of figuring out my condition had disappeared entirely.
It was at this same time that DisArt, a Disability arts and culture organization with a global reputation, reached out asking to collaborate on a project about Disability and the COVID-19 pandemic. DisArt wanted to challenge the mainstream press after the majority of outlets were describing Disabled people as disposable. Not only had our own bodies given up on us but so had many elected officials, healthcare providers, and much of society. Everyone was willing to accept and watch the Disability community die.
Published on Instagram, my first Dearest Friends poem was written for my Disabled community, begging them not to forget the discrimination and ableism we would face during the pandemic. As my health worsens and the pandemic progresses, I continue to write the My Dearest Friends poems. It’s been my way of coping.
My Dearest Friends,
I’ve been asked this a lot lately: What happens after this pandemic? Will our ableist society still care about all of the accommodations once the able-bodied don’t need them? Will our disabled community lose these accommodations? My answer? Not without a fight we won’t.
After posting the first poem, DisArt and I asked for written responses in return. These poems became the foundation of the My Dearest Friends Project, a Disability-led, grassroots, public project that amplifies marginalized voices and documents the Disabled community’s collective experience of the pandemic. We intentionally chose not to publish the last names of individuals or their account handles. This has allowed for a certain level of anonymity that creates a safe environment that allows very real and raw conversations to take place and a community to grow.
My Dearest Friends,
When this is over- and it will be, someday, for some people- how might I face the people who didn’t care? Those who didn’t wear masks? Who ate at restaurants as soon as they reopened, who went to clubs and malls and a million other places? How can I move through the world knowing how many people were willing to let me (and so many others) die? -Samir
Since the inception of the Dearest Friends Project, we have reached a global scale with submissions from across the United States, Africa, Australia, Europe, and South America. Each response is archived on the Dearest Friends Instagram and accompanied by a custom illustration. This has been our way of finding solace in shared experiences, calling out injustices, and uniting our community.
My Dearest Friends,
It’s a dangerous thing
To be Black
To be gay
To be female
To be Disabled
In this country
And yet against all odds
Here I am
Living and Breathing
Scared out of my mind
But living nonetheless
As my condition worsens, I have found great comfort in this project. I am acutely aware of my otherness. I am a college student studying art in New York City. Having taken a few years off of school due to my health, I am a few years older than the rest of my class. I walk with a cane in one hand and my medical alert service dog beside me. I used to count to three before entering a room, bracing myself for the inevitable questions and remarks as to why I use a mobility aid at such a young age. To put it simply, I am embarrassed by my disability and limitations, but I have found community and support within this global collaboration.
Through this project, I have learned the strength that comes from being part of a Disabled community; that despite extreme variations in our conditions there are certain commonalities to the Disabled experience; that silence is a privilege reserved for the able-bodied. If you are disabled, your right to exist freely and unapologetically is not guaranteed. And so, for us, the Disabled, remaining silent is not an option. We have to make our voices heard if we are to survive this pandemic.
If you would like to join us in the creation of the My Dearest Friends Project, here’s how you can participate:
- Start with “My Dearest Friends…”
- Write about your experiences with disability and/or COVID-19 (280 characters maximum).
- Sign your submission with your first name or pseudonym.
- Email your submission to [email protected] or mail a letter to DisArt’s P.O. Box: 3467 Grand Rapids, MI 49501 to receive a handwritten response from our team!
- For those with access needs, video submissions can also be sent to the DisArt email.
- Follow us! @mydearestfriendsproject