#mostly bed bound

i would visit my friend who had a baby and i would cook and clean for her and take the child when she needed me to

i would visit all my friends and we’d go on a walk, watch a movie together, eat something tasty and talk and hold each other and giggle and shed tears

i would spend a whole day drawing and painting

i would sit in the sun and watch the birds

i would cook something really delicious

i would write down everything i wanted to say

i would put together a nice outfit and wear it, style my hair and face if i wanted to

i would dance until i was too tired to continue

i would flirt and meet new people

i would reconnect with old friends

i would laugh and laugh and laugh

i would cry and cry and cry

i would take part in protests

i would dream big

i would go to the forest

i would sit in the garden

i would take a language course and practice an instrument

i would watch something and enjoy my ability to take it all in

i would take adhd meds when i needed them

i would write and send letters or long messages containing all the things i wished them to

i would be organizing

I was reflecting on my recent crash course in mostly bed bound activism, when I wrote this on the internet. “For months, there's been a question hanging over my head. Will Cuomo force disabled people like me into institutions? I'm mostly bed bound. How can I contribute? What do I do with the fear & anger (self care)? One way was to play Nina Cried Power , groove, cry & then fight.“ You see in 2019, New York State Governor Andrew Cuomo was hell bent on destroying a home care program with massive cuts, and that in the end, would force disabled people like myself, out of our homes, out of our communities and into institutions against our will. It was a strong collective effort and eventually a number of disability groups (as well as home care agencies) took Cuomo & The Department of Health to court and after much back and forth - we won! And that’s when I wrote that post, because while I was a part of the collective effort, I was also getting a real time crash course in being an activist as someone who is now mostly bed bound. One song that I kind of adopted during this time as my ‘rise up, let’s do this’ sort of anthem was Hozier’s song Nina Cried Power.

[image description: graphic has a black background. the top and bottom are frost & icicles. to the left is a photo of new york state governor andrew cuomo in a suit, in mid speech. to the right is the following text “Is Cuomo The New Polar Vortex? ‘Cus the way he’s treating disabled people is cold. Next to the word cold is the blue & white wheelchair symbol. On the bottom reads "Don’t disabled new yorkers deserve justice too?] Sometimes every morning for months, I would dance a little (when possible) as part of my physical therapy, break down and cry because besides it being a very very moving song, I am literally fighting to not be forced out of my apartment and into an institution against my will. This that should not be a legal option, IS a legal option for politicians. And while it did get some local coverage, for the most part, there was no public outrage beyond our disability community. This is something that fucks with you, weighs on you. But then after doing some self care (which involved many things, but often involved music), I would feel a little bit more ready to take this on.

[image description: a graphic where cuomo is talking to elon musk in a parking lot.  "Here you go, Elon. 750 million to create 750 jobs." he says handing him bags of money. Elon responds "Uh...you just ran over disabled people with your justice agenda." A red bus marked "Cuomo" has run over disabled people. wheelchairs in the air with the words POW. We see legs under the bus, with the speech bubble "Ow."] It was a bit unnerving because while the situation felt urgent (this was my first time dealing with this level of direct systemic oppression or ableism), I really had no idea how to be a powerful and effective mostly bed bound activist. I was used to physically attending protests and now that was not an option... how do I activist? How do I contribute to the resistance? To be clear, it wasn’t like I felt it was either in the streets or bust, and that the in person protest was the only “real” tactic, I just didn’t know of other tactics, let alone tactics that I physically could take on.

[image description: Graphic with pink background, has an 80’s vibe. To the right is a woman making a gasping / oh my god expression. The text reads “OMG! Governor Cuomo gave Elon Musk 750 million to create 750 jobs, but wants to cut 75 million from CDPA (a medicaid program that serves poor, elderly & disabled new yorkers) & creates over 100,000 jobs for the state.” In the upper right hand corner “that is not justice”] But in time, I found that I had plenty to contribute. I wrote articles that presented the issue within the context of a bigger picture. I shared my story and tried to humanize a struggle that was sometimes presented via statistics and budgets - things that just aren’t very interesting to most people.

RELATED: Why Is Governor Cuomo Attacking Disabled New Yorkers Like Me? (And What You Can Do About It)

RELATED: 10 Reasons Why Cuomo’s Attacks On Marginalized New Yorkers Must Be Opposed

RELATED: What’s The Tea with Anita Mya Rhites (#1) : Cuomo’s Shade

RELATED: Truth Revealed: Media Uncovers Cuomo’s Plans To Ship Over 70,000 Disabled and Senior New Yorkers Into Institutions.

[Illustration of a drag queen in an elaborate wig (pink, orange, and yellows) and outfit (yellow and orange). She is sitting at a table (seen from the chest up) that has a blue tea cup that reads “What’s The Tea?” on it. Next to and slightly underneath the cup is a white napkin with black print that reads “with Anita Mya Rhites . The text around her reads “I am living for this new wig. What I am not living for is Cuomo’s attacks on disabled people!”] I made media that pointed out the absurdity and hypocrisy of a governor who has been going on and on about his justice agenda, and meanwhile was throwing disabled people (and senior citizens) under the bus.

[Image description: Pink background with three rows of decorative plates (6 in each row) On top, in bold yellow font with a minor black shadow reads: Inanimate objects vs disabled people: a psa ] And while I was unable to physically attend the protests outside of Cuomo’s office, I was able to signal boost the social media posts, sometimes adding a bit of perspective, and how this issue, is a matter of freedom and civil rights. And because I’ve spent time in a nursing home, I was able to use that experience to talk about how in these places, care is this dehumanizing assembly line and a place where my health only got worse. I was able to take that crappy experience, and use that to my advantage. The truth is it wasn’t till I got home and received home care services in my apartment did I start to get better. It wasn’t till I lived in my home, was it even an option for me to do some very light grooving / physical therapy to music, let alone activism.

[image description: punk rock styled graphic with a pink graphic and yellow text that reads "Cuomo! Hands off our jobs! Workers Of The CDPA" @ rebel wheels nyc. In the center is a black and white artsy print style image of a woman sitting criss-cross, while raising a fist. She is looking out toward the right, with a proud look on her face. ] And so when I heard the news that our community won the court case, I was thrilled! But I also felt overwhelmed and cried, as ableism and direct oppression from the system is exhausting.  And that’s when I started to reflect on the past 6+ months, and I wrote: “For months, there's been a question hanging over my head. Will Cuomo force disabled people like me into institutions? I'm mostly bed bound. How can I contribute? What do I do with the fear & anger (self care)? One way was to play Nina Cried Power by Hozier, groove, cry & then fight.”

[image description: graphic with blue background. black text reads for a guy who talks so much about justice agendas, cuomo sure is hung up on forcing over 70k disabled & senior new yorkers into institutions #Justice For All  , # Save CDPA] I definitely stumbled along in the way. Trying out different tactics that didn’t always work, like trying to explain why people should care about this via cats. Adorable but not as effective as I thought it would be. I also didn’t really explain enough on the graphic. I also had to recognize the difference between what felt good, cathartic, and comforting to me as an activist, and what was going to reach people, as the two were not always the same. Sometimes you learn along the way.

[photograph of an adorably white fluffy cat, sitting on a table next to a vase filled with various pink flowers. the text reads “ # Save CDPA”] There were also times when I just did not have the energy to take action like I wanted to. Times where I just had to lay there and watch it all happen - which felt horrible. Vulnerable. It was then that I learned that sometimes you need to dig deep and temporarily surrender to the moment. You don’t have to like it, but you have to accept it. The more I try to control a moment that I can not control, the more horrible it will feel. Mindfulness. And learned how to feed my soul within the context of this situation. Make note of what filled my heart with joy, find things that make me laugh and overall make time for a much deeper level of self care. To make a conscious effort to not internalize the oppression. To know that my disabled body is not the problem. Ableism and the system is. RELATED: Ableism? What’s ableism? For me, music played a big role in that. I made many a playlist during that time and eventually adopted other anthems like “Big God” by Florence + The Machine, “Rebel Girl” by Bikini Kill, and the ever classic “Bloody Mother Fucking Asshole” by Martha Wainwright (and more.)

In the end, everyone has something to contribute. It’s just a matter of finding your thing, finding your groove, and then (spoons willing), doing the hell out it.

[image description: graphic. white background. dark blue text "Cuomo. Totally cool with destroying over 100,000 jobs for the workers, while forcing disabled and senior new yorkers into institutions against their will! But good news! He found 49 million dollars to fund vanity license plates." Bottom image of vanity license plate that reads "# save CDPA". Above the plate is a woman looking shocked] On that note, here is Nina Cried Power by Hozier (Lyrics)

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