Social media can be overwhelming and aggravating at times. I’ve also learned and appreciated being connected with so many amazing disabled people online that I would never get the chance to meet in person. One of these people is Kaalyn M. This piece is based on Kaalyn’s recent Twitter thread on March 11, 2021 on what disabled people offered the world during the pandemic. I hope this piece will be useful for all the new members of the disability and chronic illness community widely known as ‘long haulers.’ We are here and were always here.
What the Disabled Community offered the world this past year:
- best ways to stay connected with friends and family from home
- hacks to stay productive while working remotely
- tools to manage and cope with health anxiety
- honest, raw conversations about death or hospitalization
- education on virus transmission or effectiveness of any “hack” to avoid COVID
- tips, commiserations and resources to navigate healthcare and insurance
- ways to save money in all ways, but especially on the essentials for life at home
- dark humor; relief knowing it could be worse
- infinite coping strategies and realistic tools for incapacitating isolation, depression, anxiety, and knowing the system will not protect you
- hospital and ER survival guides! (both in the fun way AND literal way)
- tips on how to best support a sick loved one in your life
- often giving lifesaving instructions on using an IV pump, insulin, feeding tubes, oxygen, central lines, catheters, etc for either yourself or a loved one bc Home Care was canceled, denied, unsafe, not set up yet, or the edu was just skipped altogether in the hospital crises
- resources, links, psycho-ed, numbers, etc for dealing w/ trauma alone. So. Much. Trauma.
- the same w/ grief (the disabled community knows death and loss like few others)
- directives to the most trusted scientific journals and research
- how-to’s for healthcare self-advocacy
- jokes, jokes and more jokes
- predicting what they call “long-haulers” now and putting together post-viral strategies for sufferers long before research or media even mentioned “long covid could maybe be a thing”
- clothing recommendations for at-home, sick or hospital life
- exercise guides when you can’t leave your front yard or afford/access in-home equipment
- sleep strategies for when time becomes an illusion
- so much more!
All while being the community you were most ready to throw out the second you heard the word “pandem–” We were here.
Kaalyn M, more publicly known as Hell on Wheels, is a disability and complex trauma advocate and educator. As both a survivor of child exploitation, and someone living with a rare and progressive collection of genetic disabilities, she provides social and medical education on each, but particularly where they intersect. She is most known for creating a Straw Chart in 2018 when disabled lives were ignored in favor of marginal environmental impacts.
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