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MAKE
LEMONADE
WITH
LUPUS

Alyssa
Mackenzie//

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Eager 2 share what has been germinating ✨

I’ve got a little announcement coming up! I’m nervouscited to share some bits that have been born out of a period of deep cocooning 🦋

ID: Pink y2k balloon lettering pours out of a glittering, purple gradient conch shell overlaid on a pink and purple cloud background. My website MakeLemonadeWithLupus.com/stewardship is written in dark purple at the bottom of the image.

Audio: whistling and humming, chimes, and seaside sounds over Hawaiian-inspired jazz melody.

Eager 2 share what has been germinating ✨

I’ve got a little announcement coming up! I’m nervouscited to share some bits that have been born out of a period of deep cocooning 🦋

ID: Pink y2k balloon lettering pours out of a glittering, purple gradient conch shell overlaid on a pink and purple cloud background. My website MakeLemonadeWithLupus.com/stewardship is written in dark purple at the bottom of the image.

Audio: whistling and humming, chimes, and seaside sounds over Hawaiian-inspired jazz melody.

“Girls will say “I needed this” and it’s just not using up all their limited energy on endless unnecessary medical admin.” written above a screenshot of phone app displaying one of many hour-long phone calls, one of two today alone.

This time for a single billing issue that’s cost me dozens and dozens of hours on the phone (and thousands of dollars) since last summer.

Man, I just want to spend my brain hours on shit I actually want to do. My own choices.

Do you spend time you don’t have completing medical admin with energy you don’t have to spare?

“Girls will say “I needed this” and it’s just not using up all their limited energy on endless unnecessary medical admin.” written above a screenshot of phone app displaying one of many hour-long phone calls, one of two today alone.

This time for a single billing issue that’s cost me dozens and dozens of hours on the phone (and thousands of dollars) since last summer.

Man, I just want to spend my brain hours on shit I actually want to do. My own choices.

Do you spend time you don’t have completing medical admin with energy you don’t have to spare?

A long anticipated update on my sweet friends Ahmed and Haya, who were finally able to return to their home after nearly 18 months and without their precious daughter Habeeba. Please continue to support them — details in video and bio chuffed.org/project/help-haya-ahmed-in-their-darkest-hour ❤️

Video Description: video of me, a white woman with blue-green eyes, freckles, glasses, and brown hair and wearing a lavender sweatshirt, giving an update on Ahmed’s family with a green screen background that shows pictures and videos of Ahmed’s family and destroyed home.

Only hashtags from here.
#BrainstemTumor #BrainstemGlioma #ChildhoodCancer #ChildhoodCancerAwareness

A long anticipated update on my sweet friends Ahmed and Haya, who were finally able to return to their home after nearly 18 months and without their precious daughter Habeeba. Please continue to support them — details in video and bio chuffed.org/project/help-haya-ahmed-in-their-darkest-hour ❤️

Video Description: video of me, a white woman with blue-green eyes, freckles, glasses, and brown hair and wearing a lavender sweatshirt, giving an update on Ahmed’s family with a green screen background that shows pictures and videos of Ahmed’s family and destroyed home.

Only hashtags from here.
#BrainstemTumor #BrainstemGlioma #ChildhoodCancer #ChildhoodCancerAwareness

Your family misses you every day, sweet Habeeba 💔

Help me support her parents, my dear friends Haya and @ahmed_hassan_.9, who lost their precious daughter last week when she was denied a medical evacuation by clicking the link in my bio.

Video Description: photos and muted videos of a four year old girl with brown eyes and curly brown hair, her little sister who also has brown eyes and curly brown hair, and their father who is tall and has brown hair and brown eyes set to the chorus of @badbunnypr’s DtMF. The lyrics are overlayed on each photo or video as they are sung, and read:

“Debí tirar más fotos de cuando te tuve
Debí darte más besos y abrazos las veces que pude”

which translates to:

“I should’ve taken more pictures when I had you
I should’ve given you more kisses and hugs whenever I could“

in bold white text.

Only hashtags from here, my loves #CapCut #ChildhoodCancer #Cancer #BrainstemGlioma #BrainstemTumor

Your family misses you every day, sweet Habeeba 💔

Help me support her parents, my dear friends Haya and @ahmed_hassan_.9, who lost their precious daughter last week when she was denied a medical evacuation by clicking the link in my bio.

Video Description: photos and muted videos of a four year old girl with brown eyes and curly brown hair, her little sister who also has brown eyes and curly brown hair, and their father who is tall and has brown hair and brown eyes set to the chorus of @badbunnypr’s DtMF. The lyrics are overlayed on each photo or video as they are sung, and read:

“Debí tirar más fotos de cuando te tuve
Debí darte más besos y abrazos las veces que pude”

which translates to:

“I should’ve taken more pictures when I had you
I should’ve given you more kisses and hugs whenever I could“

in bold white text.

Only hashtags from here, my loves #CapCut #ChildhoodCancer #Cancer #BrainstemGlioma #BrainstemTumor

Emerging from the cocoon of my time away and my rethinking how I show up in this space, I rejoin you — perhaps only briefly — to wish you spots of gentle peace, love, ease, and joy in 2025, in what already seems to be a season marked by loss upon loss.

And I come with a direct and urgent ask.

As some of you already know, my dear friends Ahmed and Haya lost their precious four year old daughter Habeeba earlier this week when she was ultimately and cruelly denied a medical transfer, despite intense and valiant efforts to have her evacuated and properly treated by the appropriate team of physicians for her complicated diagnosis.

The immeasurable and white-hot pain of the loss of such an innocent, vibrant light transcends language. Unconscionably, a week prior to Habeeba’s death — during Haya’s own birthday week —Haya’s aunt, uncle, and six children were killed in a bombing. Weeks prior, Ahmed’s own father was killed. Just two days ago, Ahmed lost his namesake uncle, his cousin and his cousin’s wife, and their two young children.

And yet, despite their own world halting to a stop, the hellacious circumstances in Gaza rage on. It is in this, I hope, we can provide love and care.

Let me back up for a minute to tell you a little bit about my friends: Despite these unimaginable tragedies, Ahmed has selflessly spent the last 16 months trying to support others in Gaza, delivering money and aid to those in need. He has told me that he feels his duty and calling is to help others despite trying to support his own family under incredibly and increasingly difficult circumstances.

Now it is our turn to bolster Ahmed, Haya, Asmahan, and their soon-to-be baby boy. As Ahmed told me, “our goal now is to survive, have security and safety, and live a decent and happy life with my family.” The cost of living is extraordinarily expensive and rises daily because of the closure of crossings into Gaza; survival is no small feat even without being heavily beset by mourning’s deep chasm of bereftness.

If you have the capacity to contribute or to share Ahmed’s campaign or my details, linked in my bio, please consider doing so along with saving and commenting on this post to b00st.

Emerging from the cocoon of my time away and my rethinking how I show up in this space, I rejoin you — perhaps only briefly — to wish you spots of gentle peace, love, ease, and joy in 2025, in what already seems to be a season marked by loss upon loss.

And I come with a direct and urgent ask.

As some of you already know, my dear friends Ahmed and Haya lost their precious four year old daughter Habeeba earlier this week when she was ultimately and cruelly denied a medical transfer, despite intense and valiant efforts to have her evacuated and properly treated by the appropriate team of physicians for her complicated diagnosis.

The immeasurable and white-hot pain of the loss of such an innocent, vibrant light transcends language. Unconscionably, a week prior to Habeeba’s death — during Haya’s own birthday week —Haya’s aunt, uncle, and six children were killed in a bombing. Weeks prior, Ahmed’s own father was killed. Just two days ago, Ahmed lost his namesake uncle, his cousin and his cousin’s wife, and their two young children.

And yet, despite their own world halting to a stop, the hellacious circumstances in Gaza rage on. It is in this, I hope, we can provide love and care.

Let me back up for a minute to tell you a little bit about my friends: Despite these unimaginable tragedies, Ahmed has selflessly spent the last 16 months trying to support others in Gaza, delivering money and aid to those in need. He has told me that he feels his duty and calling is to help others despite trying to support his own family under incredibly and increasingly difficult circumstances.

Now it is our turn to bolster Ahmed, Haya, Asmahan, and their soon-to-be baby boy. As Ahmed told me, “our goal now is to survive, have security and safety, and live a decent and happy life with my family.” The cost of living is extraordinarily expensive and rises daily because of the closure of crossings into Gaza; survival is no small feat even without being heavily beset by mourning’s deep chasm of bereftness.

If you have the capacity to contribute or to share Ahmed’s campaign or my details, linked in my bio, please consider doing so along with saving and commenting on this post to b00st.

Black all caps text on white background reads: “Daydreaming while on hold. Again. Imagining a life in which so much of my limited energy is not spent doing unnecessary medical admin. I pretend my days are mine instead of the medical industrial complex’s. A day with no time spent on hold waiting to fix errors not just caused by negligence but by a system designed to penalize & exhaust those whose lives have been deemed unworthy & expendable thanks to health moralization & white supremacy.” There is emphasis on “daydreaming”, “imagining”, “mine”.

Audio: the original classical song that Karl King stole to make the infamous on hold music “The Golden Dragon”.

#Lupus #ChronicIllness #ChronicPain #DisabilityJustice #MedicalIndustrialComplex #ThingsDisabledPeopleKnow

Black all caps text on white background reads: “Daydreaming while on hold. Again. Imagining a life in which so much of my limited energy is not spent doing unnecessary medical admin. I pretend my days are mine instead of the medical industrial complex’s. A day with no time spent on hold waiting to fix errors not just caused by negligence but by a system designed to penalize & exhaust those whose lives have been deemed unworthy & expendable thanks to health moralization & white supremacy.” There is emphasis on “daydreaming”, “imagining”, “mine”.

Audio: the original classical song that Karl King stole to make the infamous on hold music “The Golden Dragon”.

#Lupus #ChronicIllness #ChronicPain #DisabilityJustice #MedicalIndustrialComplex #ThingsDisabledPeopleKnow

Idk... aries szn or something? Intentionally vague because, like raising your voice, discussing failures in your care can trigger a loss of said care. Do no harm though, right?

Audio Description: 4 slides, each with 1 minute video

Slide 1: Begging for just like basic basic care is so demoralizing and if you are a provider of any kind or if you have an office job that puts you between the patient and the care that they need, be nice. Don't laugh at them, and don't be mean to them. And don't yell at them. <scoffs> I promise that I've come into contact with a lot of people who are not nice to me in the last 3 almost 4 months that I've been dealing with this one specific issue. Hasn't changed how I talk to you. I am sure you have patients that are shitty to you, but it's not me. So don't take it out on me.

Text over video is CC.

Slide 2: I, like, fully understand that a lot of people are at the end of their ropes in so many ways and the last few years have exacerbated that on both ends, like just people in general are not okay and what's more is we're being told that there's no reason that we should be feeling like we're not okay — so there's that. Do we want to unpack the fact that I have perfected how to speak to administrators and medical professionals, which is a skillset that I never wanted to learn first of all, and second of all not accessible to everybody? I know how to be the right combination of funny and light, knowledgeable, and sweet, and I never ever raise my voice and I try to inject as much humor into these interactions as possible and I shouldn't have to do that, okay? I shouldn't have to do that; you shouldn't be mean to me. Like, that's it.

Text over video is CC.

IDs continued in pinned @makelemonadewithlupusid’s comments below 👇

Idk... aries szn or something? Intentionally vague because, like raising your voice, discussing failures in your care can trigger a loss of said care. Do no harm though, right?

Audio Description: 4 slides, each with 1 minute video

Slide 1: Begging for just like basic basic care is so demoralizing and if you are a provider of any kind or if you have an office job that puts you between the patient and the care that they need, be nice. Don't laugh at them, and don't be mean to them. And don't yell at them. <scoffs> I promise that I've come into contact with a lot of people who are not nice to me in the last 3 almost 4 months that I've been dealing with this one specific issue. Hasn't changed how I talk to you. I am sure you have patients that are shitty to you, but it's not me. So don't take it out on me.

Text over video is CC.

Slide 2: I, like, fully understand that a lot of people are at the end of their ropes in so many ways and the last few years have exacerbated that on both ends, like just people in general are not okay and what's more is we're being told that there's no reason that we should be feeling like we're not okay — so there's that. Do we want to unpack the fact that I have perfected how to speak to administrators and medical professionals, which is a skillset that I never wanted to learn first of all, and second of all not accessible to everybody? I know how to be the right combination of funny and light, knowledgeable, and sweet, and I never ever raise my voice and I try to inject as much humor into these interactions as possible and I shouldn't have to do that, okay? I shouldn't have to do that; you shouldn't be mean to me. Like, that's it.

Text over video is CC.

IDs continued in pinned @makelemonadewithlupusid’s comments below 👇

Independence is a myth (and a disservice to the magic that is caring for one another); this glaring lack of autonomy is, unfortunately, not a myth and hardly magical.

Far too often — I’d even wager *more* often than not — the right to choose to marry (or not!) is made for us.

Holding space also for the folks who can’t afford to lose better state-provided healthcare by marrying a partner with expensive but insufficient private insurance coverage. It all sucks.

Text on white graphic: Disabled folks shouldn’t have to weigh the “benefits” of marriage in a society where the “best” health insurance and thus access to healthcare is tied to employment AGAINST the *very* real losses in benefits that take place when Disabled folks get married because it’s 2023 and the U.S. *still* thinks Disabled folks don’t fall in love, don’t want the choice to marry, don’t have sex nor children, and CERTAINLY don’t deserve to be an inch above the poverty line. (We’d also love if we could survive this pandemic, which is 100% without a doubt ongoing.)

There’s brown highlight over “‘benefits’ of marriage” and “*very* real losses”.

Audio: “Modern Love” by David Bowie

“Never gonna fall for (modern love)
Walks beside me (modern love)
Walks on by (modern love)
Gets me to the church on time (church on time)
Terrifies me (church on time)
Makes me party (church on time)
Puts my trust in god and man (God and man)
No confessions (God and man)
No religion (God and man)
Don't believe in modern love”

#DisabilityJustice #MarriageEquality #Disability #ChronicPain #ChronicIllness #Lupus

Independence is a myth (and a disservice to the magic that is caring for one another); this glaring lack of autonomy is, unfortunately, not a myth and hardly magical.

Far too often — I’d even wager *more* often than not — the right to choose to marry (or not!) is made for us.

Holding space also for the folks who can’t afford to lose better state-provided healthcare by marrying a partner with expensive but insufficient private insurance coverage. It all sucks.

Text on white graphic: Disabled folks shouldn’t have to weigh the “benefits” of marriage in a society where the “best” health insurance and thus access to healthcare is tied to employment AGAINST the *very* real losses in benefits that take place when Disabled folks get married because it’s 2023 and the U.S. *still* thinks Disabled folks don’t fall in love, don’t want the choice to marry, don’t have sex nor children, and CERTAINLY don’t deserve to be an inch above the poverty line. (We’d also love if we could survive this pandemic, which is 100% without a doubt ongoing.)

There’s brown highlight over “‘benefits’ of marriage” and “*very* real losses”.

Audio: “Modern Love” by David Bowie

“Never gonna fall for (modern love)
Walks beside me (modern love)
Walks on by (modern love)
Gets me to the church on time (church on time)
Terrifies me (church on time)
Makes me party (church on time)
Puts my trust in god and man (God and man)
No confessions (God and man)
No religion (God and man)
Don't believe in modern love”

#DisabilityJustice #MarriageEquality #Disability #ChronicPain #ChronicIllness #Lupus

scrapbooking’s about to make its biggest comeback. maybe. idk. it’s still a pandemic. wear a mask. and btw if i, with a literal energy-limiting disability and difficulty with fine motor activities, can do an image description for this post you can do them for yours. they’re not perfect, but i’m doing my darnedest to stop letting the pursuit of perfection result in my silence. i will practice what i preach. i will show up as i am.

the post itself is one seamless, long mixed media collage broken up into 10 individual slides. Across all ten slides, the design consists of photos and screenshots of art, poems, and tweets, with mod flowers, hearts, and stripes, and a 70s color scheme. below, each slide will be described from top left, clockwise.

slides:

1- photo of lights in fog at midnight on new year’s morning, selfie of @senor_met and me in our mirror, the poem “i am running into a new year” by lucille clifton, a pic of mike, and a photo of a mini collage i made for the month

2- pic of cafe, a screenshot of my story with a photo of me logging into zoom and the words “me on my way to tell cis white men they’re wrong about MAID”, two selfies

3- @andy_mack1804 at @discanddat, two pics of my sleeve pushed up enough to see tiny tattoo test dot in shape of heart by @sarahruthlesstattoos at @havenstudiobk and the caption “close up for my only fans”, @thedeathalchemist’s post “what is difficult is also divine” over painting of white ethereal figure walking up hill at night with a stick and dog, @plaguepoem’s “in lieu of resolutions”, andrew and mike on andrew’s 19th birthday

IDs continued in pinned comments 👇

scrapbooking’s about to make its biggest comeback. maybe. idk. it’s still a pandemic. wear a mask. and btw if i, with a literal energy-limiting disability and difficulty with fine motor activities, can do an image description for this post you can do them for yours. they’re not perfect, but i’m doing my darnedest to stop letting the pursuit of perfection result in my silence. i will practice what i preach. i will show up as i am.

the post itself is one seamless, long mixed media collage broken up into 10 individual slides. Across all ten slides, the design consists of photos and screenshots of art, poems, and tweets, with mod flowers, hearts, and stripes, and a 70s color scheme. below, each slide will be described from top left, clockwise.

slides:

1- photo of lights in fog at midnight on new year’s morning, selfie of @senor_met and me in our mirror, the poem “i am running into a new year” by lucille clifton, a pic of mike, and a photo of a mini collage i made for the month

2- pic of cafe, a screenshot of my story with a photo of me logging into zoom and the words “me on my way to tell cis white men they’re wrong about MAID”, two selfies

3- @andy_mack1804 at @discanddat, two pics of my sleeve pushed up enough to see tiny tattoo test dot in shape of heart by @sarahruthlesstattoos at @havenstudiobk and the caption “close up for my only fans”, @thedeathalchemist’s post “what is difficult is also divine” over painting of white ethereal figure walking up hill at night with a stick and dog, @plaguepoem’s “in lieu of resolutions”, andrew and mike on andrew’s 19th birthday

IDs continued in pinned comments 👇

CC: Good news! If you’ve been avoiding Be Real because you actually don’t need more opportunities to see people unmasked indoors, Instagram has you covered. Now Be Real is a function in your stories. /s

Kool & The Gang’s “Celebration” plays in the background.

Video description: white woman with brown hair and clear acrylic glasses sits in bed and shares the above audio sarcastically. In the top right corner, a smaller photo reveals the phone’s front camera’s view, the corner of her bedroom with closet, curtained window, and plant. A caption across this smaller photo reads, “If I Be Realed this would always be my view.”

CC: Good news! If you’ve been avoiding Be Real because you actually don’t need more opportunities to see people unmasked indoors, Instagram has you covered. Now Be Real is a function in your stories. /s

Kool & The Gang’s “Celebration” plays in the background.

Video description: white woman with brown hair and clear acrylic glasses sits in bed and shares the above audio sarcastically. In the top right corner, a smaller photo reveals the phone’s front camera’s view, the corner of her bedroom with closet, curtained window, and plant. A caption across this smaller photo reads, “If I Be Realed this would always be my view.”

✌️ December and with it 2022, marked by loss unimaginable alongside intentional, small acts of persistent and resistant joy as so many of us continue to be erased by The Great Disappearing.

The complex opposing truths we held in 2022 grow heavier by the day — and with it our hearts and bodyminds.

In the last 365, I endeavored to take one photo a day each day I was able to at least lift my phone, press capture. An act of resistance: I am here I am here I am.

Here I am: listening to voice notes from sweet friends and if I close my eyes here they are with me, in my bed — again and again and again I am here in my bed. Here I am: thrilled with the privilege of making it to the pharmacy, to the market, to the home of a loved one who texted right before, “I’ve just tested negative, but I’ll wear a good mask. Is there anything else I can do to help keep you safe?”

And somehow, here I am: across Turtle Island briefly, masked of course. Overcome by the landscape and its expansiveness — and mine, mournful for all with less liberation than I experience, for those grieving even more than I have and do, for those completely disappeared, for those we lost altogether — while the disappearing and the loss is downplayed, is hidden, is denied. Deemed unworthy even as a headline.

As if 1,100,000 US deaths is a morbid fiction we’ve conspired. As if we like staying home, isolating, getting sicker still from lack of care. As if we enjoy serving as a reminder of the unkindness of others, a chosen unkindness those others would rather soon forget. As if we welcome the looks, the harassment, the spitting — and worse. As if a piece of fabric that keeps us all safer is anything more than just that.

I hope 2023 is kinder to all of us, especially those of us who have not known ease. Not once. The question of how much one person can endure tossed aside. Instead each second will be endured as it greets us. Again and again and again.

The rebellion of our enduring existence now takes on its fourth year. I hope the unrelenting work marking our place while surviving an ever growing great dying solitarily is gentler for you, for me, for all of us.

Continued below in comments, with IDs 👇

✌️ December and with it 2022, marked by loss unimaginable alongside intentional, small acts of persistent and resistant joy as so many of us continue to be erased by The Great Disappearing.

The complex opposing truths we held in 2022 grow heavier by the day — and with it our hearts and bodyminds.

In the last 365, I endeavored to take one photo a day each day I was able to at least lift my phone, press capture. An act of resistance: I am here I am here I am.

Here I am: listening to voice notes from sweet friends and if I close my eyes here they are with me, in my bed — again and again and again I am here in my bed. Here I am: thrilled with the privilege of making it to the pharmacy, to the market, to the home of a loved one who texted right before, “I’ve just tested negative, but I’ll wear a good mask. Is there anything else I can do to help keep you safe?”

And somehow, here I am: across Turtle Island briefly, masked of course. Overcome by the landscape and its expansiveness — and mine, mournful for all with less liberation than I experience, for those grieving even more than I have and do, for those completely disappeared, for those we lost altogether — while the disappearing and the loss is downplayed, is hidden, is denied. Deemed unworthy even as a headline.

As if 1,100,000 US deaths is a morbid fiction we’ve conspired. As if we like staying home, isolating, getting sicker still from lack of care. As if we enjoy serving as a reminder of the unkindness of others, a chosen unkindness those others would rather soon forget. As if we welcome the looks, the harassment, the spitting — and worse. As if a piece of fabric that keeps us all safer is anything more than just that.

I hope 2023 is kinder to all of us, especially those of us who have not known ease. Not once. The question of how much one person can endure tossed aside. Instead each second will be endured as it greets us. Again and again and again.

The rebellion of our enduring existence now takes on its fourth year. I hope the unrelenting work marking our place while surviving an ever growing great dying solitarily is gentler for you, for me, for all of us.

Continued below in comments, with IDs 👇

november 2022 was hard and good and chock full of grief and joy and improved collage skills 🖤

photos, counter clockwise from top left each slide with some photos across two slides:

1 tweet by @kevinfarzad “so sorry for my delayed response to this email, i have been working through a global pandemic which people refer to in the past tense now even though it is still definitely happening”

2 a photo of the back roofline and stack of wood at @hayfieldsmarket with a bluebird sky backdrop

3 norwalk islands from calf pasture

4 @cayla.brianne.mackenzie and I floral masked at a scostcoes

5 sliver of moon over elm

6 field with red barn by mather meadows

7 the pure magic of @merissaspear, her sweet little one, and me, finally together

8 a cut off selfie with text “I am so tired of explaining I don’t have the luxury of being more sick/disabled.”

9 my tweet “The only thing worse than being disappeared — and mocked by those disappearing us — is the finely tuned magic of our clairvoyance, the knowing *deep in our bones* that this would happen, just like this. I wish I hadn’t seen the future: it is so much harder to live this twice.”

10 photo of #SamiSchalk’s #BlackDisabilityPolitics

11 my fuzzy smiley face slippers in front of the tv as I lay in bed watching DWD and infusing

12 sunbeams through some of the best autumn colors we’ve seen in years, seemingly spotlighting the favorite seat of someone we miss very much who would have been 94 on november 13th

13 @andy_mack1804, @cayla.brianne.mackenzie, and I take a masked mirror selfie

14 @bennessb’s tweet “when people talk about how disappointing it is to see photos of supposed allies in public without a mask, we’re not trying to control anyone. we’re grieving a world where even “allies” are making spaces overly hostile & unsafe for us”

*final slide with video descriptions in pinned comment below 👇

november 2022 was hard and good and chock full of grief and joy and improved collage skills 🖤

photos, counter clockwise from top left each slide with some photos across two slides:

1 tweet by @kevinfarzad “so sorry for my delayed response to this email, i have been working through a global pandemic which people refer to in the past tense now even though it is still definitely happening”

2 a photo of the back roofline and stack of wood at @hayfieldsmarket with a bluebird sky backdrop

3 norwalk islands from calf pasture

4 @cayla.brianne.mackenzie and I floral masked at a scostcoes

5 sliver of moon over elm

6 field with red barn by mather meadows

7 the pure magic of @merissaspear, her sweet little one, and me, finally together

8 a cut off selfie with text “I am so tired of explaining I don’t have the luxury of being more sick/disabled.”

9 my tweet “The only thing worse than being disappeared — and mocked by those disappearing us — is the finely tuned magic of our clairvoyance, the knowing *deep in our bones* that this would happen, just like this. I wish I hadn’t seen the future: it is so much harder to live this twice.”

10 photo of #SamiSchalk’s #BlackDisabilityPolitics

11 my fuzzy smiley face slippers in front of the tv as I lay in bed watching DWD and infusing

12 sunbeams through some of the best autumn colors we’ve seen in years, seemingly spotlighting the favorite seat of someone we miss very much who would have been 94 on november 13th

13 @andy_mack1804, @cayla.brianne.mackenzie, and I take a masked mirror selfie

14 @bennessb’s tweet “when people talk about how disappointing it is to see photos of supposed allies in public without a mask, we’re not trying to control anyone. we’re grieving a world where even “allies” are making spaces overly hostile & unsafe for us”

*final slide with video descriptions in pinned comment below 👇

21 photos from 16 days spent across 16 states (and one province: Ontario!) on a 5,938.6 mile cross-countries roadtrip that taught us that we are, in fact, actually, the roadtripping type — and that it’s quite possible (with a bit of luck and, ofc, privilege) to travel safely during what is actually *checks notes* a very active and ongoing pandemic.

We learned p quick that photos did the landscapes we met no justice, and turned the camera on ourselves to remember such special spots by.

(Please don’t @ me about the photo collage not quiiiite matching up from slide to slide; it was my first time and I tried my level best — something new to learn, at any rate, as I try to do my part to make insta analog and real life, photo-centric again. Also, if I didn’t post these soon I probably never would. We’ve been home for closing in on two weeks!)

I’ll spare you the blisters and prose, but I’m happy to share all we did to protect ourselves from contracting — and spreading — Covid, beyond the basic testing daily and wearing without exception good masks everywhere publicly indoors and in crowded outdoor spaces, which on the whole we avoided as much as possible.

IDs:

1. Mike & I in front of the “Welcome to Utah” sign, which commemorated our western-most locale. Hey guys, wow. We did it!

2. Clockwise from center left: a bit of the first photo from the prior slide; me in a pink dress on a massive rock at Arches National Park; Mike and I with the iconic Delicate Arch behind us; Mike and I in front of some more rocks that probably look all the same at this point, the Fiery Furnace.

3. Clockwise from bottom left: two photos from previous slide, a photo of Mike and I overlooking a golf course in Park City, my childhood bestie Natalie and me in front of a house, and a photo of five more childhood friends and I walking up Flagstaff Mountain in our Wedding Best following two dear friends' wedding ceremony. This was the point of the whole dang trip!

4. A bit of the last photo from previous slide, and a photo of Mike kissing my cheek while my eyes are closed in front of a wooded area. On the right are two bits of the photos on the next slide.

IDs continued in pinned comments.

21 photos from 16 days spent across 16 states (and one province: Ontario!) on a 5,938.6 mile cross-countries roadtrip that taught us that we are, in fact, actually, the roadtripping type — and that it’s quite possible (with a bit of luck and, ofc, privilege) to travel safely during what is actually *checks notes* a very active and ongoing pandemic.

We learned p quick that photos did the landscapes we met no justice, and turned the camera on ourselves to remember such special spots by.

(Please don’t @ me about the photo collage not quiiiite matching up from slide to slide; it was my first time and I tried my level best — something new to learn, at any rate, as I try to do my part to make insta analog and real life, photo-centric again. Also, if I didn’t post these soon I probably never would. We’ve been home for closing in on two weeks!)

I’ll spare you the blisters and prose, but I’m happy to share all we did to protect ourselves from contracting — and spreading — Covid, beyond the basic testing daily and wearing without exception good masks everywhere publicly indoors and in crowded outdoor spaces, which on the whole we avoided as much as possible.

IDs:

1. Mike & I in front of the “Welcome to Utah” sign, which commemorated our western-most locale. Hey guys, wow. We did it!

2. Clockwise from center left: a bit of the first photo from the prior slide; me in a pink dress on a massive rock at Arches National Park; Mike and I with the iconic Delicate Arch behind us; Mike and I in front of some more rocks that probably look all the same at this point, the Fiery Furnace.

3. Clockwise from bottom left: two photos from previous slide, a photo of Mike and I overlooking a golf course in Park City, my childhood bestie Natalie and me in front of a house, and a photo of five more childhood friends and I walking up Flagstaff Mountain in our Wedding Best following two dear friends' wedding ceremony. This was the point of the whole dang trip!

4. A bit of the last photo from previous slide, and a photo of Mike kissing my cheek while my eyes are closed in front of a wooded area. On the right are two bits of the photos on the next slide.

IDs continued in pinned comments.

How lucky am I to know love like this?

Perhaps I’m not particularly fond of my own birthday because I’m uplifted by so much love and care each and every single day by those I’m lucky enough to count as my own (♓️?) but I sure am appreciative of all the ways you see me and show up for me, online and in person — thank you, thank you, thank you for the love during this week and beyond.

If you were thinking of getting me a little something and were not sure what that little something should be, I’d love if you could share or contribute to one or all of the following fundraisers near and dear to my heart, as you are able:

1. Help support Thai

Our precious Thai of @LittleOm is in a perilous position with their devastatingly painful condition, abusively neglectful physicians, and unmet support for food and food prep. Please share this link and contribute any amount you are able.

2. Get Mary some wheels

@maryfashik of @upgradeaccessibility is a phenomenal accessibility activist, businesswoman, and queer, disabled woman of color who is in need of an accessible van to maintain her independence and care.

3. Support disabled folks in Ukraine

I know we’re all gutted by the news out of Ukraine. This disabled-led, on the ground organization provides information to disabled people in Ukraine, and includes a crisis fund. Please contribute what you can.

Links can all be found in my bio 💕

ID:

Photo 1: My brother Andrew, sister Tess, yiayia Gitty, and sister Cayla sit at the kitchen table laughing.

Photo 2: My sister Addi, mom, Cayla, and Andrew bring crème brûlée with lit candles to me, on the couch, while bernedoodle Genevieve joins in on the action.

Photo 3: Genevieve tries to blow out the candles while Addi and I look on, smiling. My mom and Cayla stand in the background.

Photo 4: Addi, my mom, Andrew, my dad Chris, and fiancé Mike watch as I open presents not delayed by supply chain issues.

End ID

How lucky am I to know love like this?

Perhaps I’m not particularly fond of my own birthday because I’m uplifted by so much love and care each and every single day by those I’m lucky enough to count as my own (♓️?) but I sure am appreciative of all the ways you see me and show up for me, online and in person — thank you, thank you, thank you for the love during this week and beyond.

If you were thinking of getting me a little something and were not sure what that little something should be, I’d love if you could share or contribute to one or all of the following fundraisers near and dear to my heart, as you are able:

1. Help support Thai

Our precious Thai of @LittleOm is in a perilous position with their devastatingly painful condition, abusively neglectful physicians, and unmet support for food and food prep. Please share this link and contribute any amount you are able.

2. Get Mary some wheels

@maryfashik of @upgradeaccessibility is a phenomenal accessibility activist, businesswoman, and queer, disabled woman of color who is in need of an accessible van to maintain her independence and care.

3. Support disabled folks in Ukraine

I know we’re all gutted by the news out of Ukraine. This disabled-led, on the ground organization provides information to disabled people in Ukraine, and includes a crisis fund. Please contribute what you can.

Links can all be found in my bio 💕

ID:

Photo 1: My brother Andrew, sister Tess, yiayia Gitty, and sister Cayla sit at the kitchen table laughing.

Photo 2: My sister Addi, mom, Cayla, and Andrew bring crème brûlée with lit candles to me, on the couch, while bernedoodle Genevieve joins in on the action.

Photo 3: Genevieve tries to blow out the candles while Addi and I look on, smiling. My mom and Cayla stand in the background.

Photo 4: Addi, my mom, Andrew, my dad Chris, and fiancé Mike watch as I open presents not delayed by supply chain issues.

End ID

😞

ID: screenshots of two of my tweets on a pink and yellow background, respectively.

Slide 1

I feel so sick to my stomach when I think of the kids who are going to end up like me, when it’s avoidable.

With just a piece of cloth.

I am proudly disabled, AND I am in a disabling amount of pain every second of every minute of every single day of my life.

Every single day.

Slide 2

I would like 24 hours of nondisabled ignorance pls. I’ve already met my deductible so it shouldn’t be a problem?

END ID

😞

ID: screenshots of two of my tweets on a pink and yellow background, respectively.

Slide 1

I feel so sick to my stomach when I think of the kids who are going to end up like me, when it’s avoidable.

With just a piece of cloth.

I am proudly disabled, AND I am in a disabling amount of pain every second of every minute of every single day of my life.

Every single day.

Slide 2

I would like 24 hours of nondisabled ignorance pls. I’ve already met my deductible so it shouldn’t be a problem?

END ID

If you, like me, are also exhausted by the incessant requirement to correct dangerous disinformation comparing covid to the flu, here are a few data points as of February 3rd.

ID: Screenshot of 6 of my tweets overlaid on multicolor background with shapes of varying forms and sizes.

Slide 1

Cw: covid, death

A 4 part thread looking solely at deaths from covid -rather than other important aspects of the disease and pandemic such as long covid, disability, healthcare strain, mental health implications - since that seems to be the only metric anyone is interested inDown pointing backhand index

Slide 2

1/ The severity and impact of the flu is not "worse" than covid.

The worst flu season in the last decade in the US was 2017-2018, and resulted in 61,000 deaths.

The latest 7 day average for the US was 2,631 deaths, which would equate to 137,188 deaths over the course of a year.

Slide 3

2/ In reality the US saw 385,443 deaths in 2020 and 446,197 in 2021, with that number expected to rise as data is finalized.

In fact, there have been more deaths from omicron (which many believe to be milder) than delta already, with a 39% increase in deaths in the last 2 weeks.

Slide 4

3/ We have a much higher death rate than other wealthy countries, and the worst part is it does not have to be this way.

See also: cloth masks are better than nothing; masking in schools works; VACCINES + infection = highest level of protection.

Stop. Cherrypicking. The. Data.

Slide 5

4/ Sources: CDC, WHO, Yale, Johns Hopkins, WebMD, CNBC, NY Times, Austin American Statesman.

END ID

** I am currently too poorly to send everyone links to the sources. I am sorry that @Instagram is so awful at accessibility and linking to the internet. A google search of each of the statistics will yield results to the sources I’ve used. I believe in you 👍

If you, like me, are also exhausted by the incessant requirement to correct dangerous disinformation comparing covid to the flu, here are a few data points as of February 3rd.

ID: Screenshot of 6 of my tweets overlaid on multicolor background with shapes of varying forms and sizes.

Slide 1

Cw: covid, death

A 4 part thread looking solely at deaths from covid -rather than other important aspects of the disease and pandemic such as long covid, disability, healthcare strain, mental health implications - since that seems to be the only metric anyone is interested inDown pointing backhand index

Slide 2

1/ The severity and impact of the flu is not "worse" than covid.

The worst flu season in the last decade in the US was 2017-2018, and resulted in 61,000 deaths.

The latest 7 day average for the US was 2,631 deaths, which would equate to 137,188 deaths over the course of a year.

Slide 3

2/ In reality the US saw 385,443 deaths in 2020 and 446,197 in 2021, with that number expected to rise as data is finalized.

In fact, there have been more deaths from omicron (which many believe to be milder) than delta already, with a 39% increase in deaths in the last 2 weeks.

Slide 4

3/ We have a much higher death rate than other wealthy countries, and the worst part is it does not have to be this way.

See also: cloth masks are better than nothing; masking in schools works; VACCINES + infection = highest level of protection.

Stop. Cherrypicking. The. Data.

Slide 5

4/ Sources: CDC, WHO, Yale, Johns Hopkins, WebMD, CNBC, NY Times, Austin American Statesman.

END ID

** I am currently too poorly to send everyone links to the sources. I am sorry that @Instagram is so awful at accessibility and linking to the internet. A google search of each of the statistics will yield results to the sources I’ve used. I believe in you 👍

Disabled folks are *still* not okay.

In fact we are less okay than ever.

And if the disabled folks in your life aren’t sharing their not okay-ness with you, it’s because they’ve determined you’re not a safe space.

ID: screenshots of my tweets over a photo I took of snow covered trees in wetlands.

Slide 1

Other people’s comfort, to quote Morgan Parker, cannot continue to keep me up at night.

So many disabled folks perform okay-ness to avoid the energy suck that is consoling predisabled folks distraught by our daily circumstances.

By our grief.

Slide 2

I see now that in minimizing my experiences in order to amplify others’ who are more harmed, or prevent individuals from absorbing the blame that rests on the government, I’m failing to fully normalize the relentless injustices and pain we face individually and collectively.

Slide 3

While no one deserves access to my private medical information, if there’s a ripple effect beginning with each of us I must do what I can when I have the energy and am able to touch with my own raw, honest truth those within the reaches of my ripples.

Another vector of sorts.

Slide 4

Community spread impacts all of us, not just those who think they are able to survive an infection, in more ways than one.

Slide 5

More cases = a less safe world for disabled folks who do not have the luxury of magical thinking nor access to the make believe medical system teeming with resources predisableds seem to think we so easily navigate.

Slide 6

If it’s not Covid that will further disable or kill us, it’s the previously overburdened and now fully decimated healthcare system that had already begun to shave years off of our lives before we even knew the word “Covid-19”.

Slide 7

I hear the rallying call of “we can’t live like this forever!”

I hear it because many of us won’t.

Slide 8

The way disabled folks show up for each other and their loved ones is a gentle, precious, and life saving intimacy.

How heartbreaking the world is missing out on this transformational caregiving when it cuts off our access to even the most “radical” primarily predisabled spaces.

Continued in comments 👇

Disabled folks are *still* not okay.

In fact we are less okay than ever.

And if the disabled folks in your life aren’t sharing their not okay-ness with you, it’s because they’ve determined you’re not a safe space.

ID: screenshots of my tweets over a photo I took of snow covered trees in wetlands.

Slide 1

Other people’s comfort, to quote Morgan Parker, cannot continue to keep me up at night.

So many disabled folks perform okay-ness to avoid the energy suck that is consoling predisabled folks distraught by our daily circumstances.

By our grief.

Slide 2

I see now that in minimizing my experiences in order to amplify others’ who are more harmed, or prevent individuals from absorbing the blame that rests on the government, I’m failing to fully normalize the relentless injustices and pain we face individually and collectively.

Slide 3

While no one deserves access to my private medical information, if there’s a ripple effect beginning with each of us I must do what I can when I have the energy and am able to touch with my own raw, honest truth those within the reaches of my ripples.

Another vector of sorts.

Slide 4

Community spread impacts all of us, not just those who think they are able to survive an infection, in more ways than one.

Slide 5

More cases = a less safe world for disabled folks who do not have the luxury of magical thinking nor access to the make believe medical system teeming with resources predisableds seem to think we so easily navigate.

Slide 6

If it’s not Covid that will further disable or kill us, it’s the previously overburdened and now fully decimated healthcare system that had already begun to shave years off of our lives before we even knew the word “Covid-19”.

Slide 7

I hear the rallying call of “we can’t live like this forever!”

I hear it because many of us won’t.

Slide 8

The way disabled folks show up for each other and their loved ones is a gentle, precious, and life saving intimacy.

How heartbreaking the world is missing out on this transformational caregiving when it cuts off our access to even the most “radical” primarily predisabled spaces.

Continued in comments 👇

An updated “sending love this holiday season” graphic inclusive of disabled folks’ experiences this holiday season, thanks to Lorna’s apt suggestion.

So here are some Covid-safe gnomes hoping to validate some disabled folks.

And that means this validation is inclusive of our family, friends, and others who help keep us safe; sending love and validation to those who love disabled folks and are equally committed to keeping us *all* safe.

It’s really rough to face a season that is historically physically, mentally, and emotionally taxing for us due to our disabilities at the end of the second year of a pandemic that the “worried well” are no longer worried about despite the alarms sounded by scientists, watching as the world goes on for so many who cannot be bothered to establish or re-establish safety precautions if the stakes are “just” getting that much closer to 6 million worldwide deaths due to Covid that much quicker.

They know who is most at risk, and turns out they don’t think it’s them even as mild, acute cases in younger adults are causing the most disabling long Covid cases. 🤷‍♀️

Tis the season, right? 🥳

ID: 2 square, white graphics.

Slide 1: 9 pink painted gnomes, 3 by 3, wearing a green mask that says “wear your mask”. At the top of the graphic is the underlined headline “Love and solidarity to disabled folks who are…” with my IG handle, and under each gnome is a different sentiment, which read: “Grieving a loss during the holidays.” “Homesick for family and friends.” “Mentally and physically drained.” “Trying to hold it all together.” “Feeling lonely or are alone.” “Worried about what the future holds.” “More disabled due to the pandemic.” “Preparing for a third year of isolation.” “Keenly aware society doesn’t care if disabled folks live or die.”

Slide 2: At top of white graphic, the same underlined headline from slide 1 reads: “Love and solidarity to disabled folks who are…” with my IG handle and one large, pink, bearded gnome underneath. The gnome is wearing a green mask that reads “wear your mask”. There are three black lines under the gnome to fill in your own sentiment as you see fit. End ID

An updated “sending love this holiday season” graphic inclusive of disabled folks’ experiences this holiday season, thanks to Lorna’s apt suggestion.

So here are some Covid-safe gnomes hoping to validate some disabled folks.

And that means this validation is inclusive of our family, friends, and others who help keep us safe; sending love and validation to those who love disabled folks and are equally committed to keeping us *all* safe.

It’s really rough to face a season that is historically physically, mentally, and emotionally taxing for us due to our disabilities at the end of the second year of a pandemic that the “worried well” are no longer worried about despite the alarms sounded by scientists, watching as the world goes on for so many who cannot be bothered to establish or re-establish safety precautions if the stakes are “just” getting that much closer to 6 million worldwide deaths due to Covid that much quicker.

They know who is most at risk, and turns out they don’t think it’s them even as mild, acute cases in younger adults are causing the most disabling long Covid cases. 🤷‍♀️

Tis the season, right? 🥳

ID: 2 square, white graphics.

Slide 1: 9 pink painted gnomes, 3 by 3, wearing a green mask that says “wear your mask”. At the top of the graphic is the underlined headline “Love and solidarity to disabled folks who are…” with my IG handle, and under each gnome is a different sentiment, which read: “Grieving a loss during the holidays.” “Homesick for family and friends.” “Mentally and physically drained.” “Trying to hold it all together.” “Feeling lonely or are alone.” “Worried about what the future holds.” “More disabled due to the pandemic.” “Preparing for a third year of isolation.” “Keenly aware society doesn’t care if disabled folks live or die.”

Slide 2: At top of white graphic, the same underlined headline from slide 1 reads: “Love and solidarity to disabled folks who are…” with my IG handle and one large, pink, bearded gnome underneath. The gnome is wearing a green mask that reads “wear your mask”. There are three black lines under the gnome to fill in your own sentiment as you see fit. End ID

Language informs and perpetuates belief systems which, in terms of ableism, directly impacts both disabled folks place within and treatment by society, as well as the quality and quantity of our care.

How we are talked about impacts our wellbeing.

We are largely at the whim of every single person we must be in contact with and their perception of us and our access needs *in order to survive.*

When our needs are viewed as superfluous rather than as our innate rights, we suffer for it — and worse.

(Look no further than the euphemism “special needs” to see how this plays out in school settings.)

(And the erasure of us and our intrinsic worth all panini long, which has often played out as overt and sanctioned eugenics.)

Hence:

Society is in a perilous position when, mid pandemic, potentially life-preserving precautions are branded and soliloquized in terms of “comfort”.

I’m not lacking the comfort required to let my guard down during omicron, I’m lacking the immune system to survive a covid infection.

ID: screenshot of my tweet above posted at 2:35 pm. Tweet is overlaid on mauve background, and has a photo of me laying on the couch looking like my mama with Twitter name “Alyssa is p sick of predisableds”. END ID

Language informs and perpetuates belief systems which, in terms of ableism, directly impacts both disabled folks place within and treatment by society, as well as the quality and quantity of our care.

How we are talked about impacts our wellbeing.

We are largely at the whim of every single person we must be in contact with and their perception of us and our access needs *in order to survive.*

When our needs are viewed as superfluous rather than as our innate rights, we suffer for it — and worse.

(Look no further than the euphemism “special needs” to see how this plays out in school settings.)

(And the erasure of us and our intrinsic worth all panini long, which has often played out as overt and sanctioned eugenics.)

Hence:

Society is in a perilous position when, mid pandemic, potentially life-preserving precautions are branded and soliloquized in terms of “comfort”.

I’m not lacking the comfort required to let my guard down during omicron, I’m lacking the immune system to survive a covid infection.

ID: screenshot of my tweet above posted at 2:35 pm. Tweet is overlaid on mauve background, and has a photo of me laying on the couch looking like my mama with Twitter name “Alyssa is p sick of predisableds”. END ID

protect those lil hearts and minds, besties.

radical empathy =/= endless empathy.

consuming mass trauma on this ever-heightening level is not sustainable.

and if you are working toward self preservation but can’t do it for yourself for yourself’s sake (yet!), consider that (selfishly!) you can’t help the collective if you’re on the same consciousness as all of the world’s suffering, at once.

Hence my reissuing this morning of the same advice I have offered in the past 👇

Permission to shut off the news and all aspects of your tech that feeds you the horrors of the day.

We aren’t meant to synthesize this much trauma and suffering on a regular basis.

Studies show that viewing trauma is still trauma.

The news isn’t going anywhere.

Take a break ❤️

ID: screenshot of my tweet of the above advice published at 11:39 am today. Tweet is overlaid on peachy-pink background, and has a photo of me laying on the couch looking like my mama with Twitter name “Alyssa is p sick of predisableds”. END ID

protect those lil hearts and minds, besties.

radical empathy =/= endless empathy.

consuming mass trauma on this ever-heightening level is not sustainable.

and if you are working toward self preservation but can’t do it for yourself for yourself’s sake (yet!), consider that (selfishly!) you can’t help the collective if you’re on the same consciousness as all of the world’s suffering, at once.

Hence my reissuing this morning of the same advice I have offered in the past 👇

Permission to shut off the news and all aspects of your tech that feeds you the horrors of the day.

We aren’t meant to synthesize this much trauma and suffering on a regular basis.

Studies show that viewing trauma is still trauma.

The news isn’t going anywhere.

Take a break ❤️

ID: screenshot of my tweet of the above advice published at 11:39 am today. Tweet is overlaid on peachy-pink background, and has a photo of me laying on the couch looking like my mama with Twitter name “Alyssa is p sick of predisableds”. END ID

Holding so much space for all who are having or will have a hard time today. (If this is not for you, keep scrolling.)

This colonizer “holiday” is obviously rife with contradictions and conflict and being a member (or not…) of a family is, to put it mildly, *so* complexly difficult.

(I usually share more about this both historically and emotionality-wise, but not this year as I continue to be extraordinarily poorly.)

And speaking of: it’s still a fucking panini! (Would you even know if you weren’t yourself disabled or in relationship with someone who is, and who is also not afraid to educate you?)

If today brings up a lot for you, for whichever combination of the infinite number of reasons today can be tedious, horrible, or traumatic, I hope there are spots of ease.

Please try to center your own safety and wellbeing as much as you are able.

It’s a luxury and privilege not afforded to many of us to do otherwise. Bear that in mind.

And be gentle with yourself.

It will be tomorrow soon. (Though I’m sure not soon enough.)

ID: photo of the sunrise behind the trees through our bedroom window and through a sun-sized crack in the curtains this morning to help with the algorithm that does not care for text posts. End ID

Holding so much space for all who are having or will have a hard time today. (If this is not for you, keep scrolling.)

This colonizer “holiday” is obviously rife with contradictions and conflict and being a member (or not…) of a family is, to put it mildly, *so* complexly difficult.

(I usually share more about this both historically and emotionality-wise, but not this year as I continue to be extraordinarily poorly.)

And speaking of: it’s still a fucking panini! (Would you even know if you weren’t yourself disabled or in relationship with someone who is, and who is also not afraid to educate you?)

If today brings up a lot for you, for whichever combination of the infinite number of reasons today can be tedious, horrible, or traumatic, I hope there are spots of ease.

Please try to center your own safety and wellbeing as much as you are able.

It’s a luxury and privilege not afforded to many of us to do otherwise. Bear that in mind.

And be gentle with yourself.

It will be tomorrow soon. (Though I’m sure not soon enough.)

ID: photo of the sunrise behind the trees through our bedroom window and through a sun-sized crack in the curtains this morning to help with the algorithm that does not care for text posts. End ID

Can we go back to when those with the privilege of no longer being worried about contracting (or spreading) covid were surprised but ultimately understood why disabled folks were still inside, rather than our being met with confusion and even ridicule?

While I’ve got you here, please check out the link in my bio and help our dear friend @maryfashik of @upgradeaccessibility get some new wheels. Everyone deserves a vehicle that is accessible to them, and Mary’s independence and healthcare (and more!) are dependent on her having an accessible van.

ID: screenshot of my tweet:

“First they were with us.
Then they understood.
Now they forgot.

And worse.

Our bodies reminders of the deaths they’re willing to sacrifice for the perception of normalcy.

We are still in a pandemic, with so few allies.

If your future erases disabled folks it’s not liberating.”

End ID

Can we go back to when those with the privilege of no longer being worried about contracting (or spreading) covid were surprised but ultimately understood why disabled folks were still inside, rather than our being met with confusion and even ridicule?

While I’ve got you here, please check out the link in my bio and help our dear friend @maryfashik of @upgradeaccessibility get some new wheels. Everyone deserves a vehicle that is accessible to them, and Mary’s independence and healthcare (and more!) are dependent on her having an accessible van.

ID: screenshot of my tweet:

“First they were with us.
Then they understood.
Now they forgot.

And worse.

Our bodies reminders of the deaths they’re willing to sacrifice for the perception of normalcy.

We are still in a pandemic, with so few allies.

If your future erases disabled folks it’s not liberating.”

End ID

It’s time to vote 🗳

💙 What are you centering?

I’m centering *every* single child in our community.

I’m centering commitment to excellence.

I’m centering experience.

I’m centering compassion and care.

I’m centering science. Facts. Comfort and belonging — true belonging.

I’m centering trusted leadership.

I’m centering progress.

And in doing so I’ve found myself centering nine women on the top of the @NewCanaanDemocrats’ ticket.

Nine women I could not be more proud of, in fact.

It’s no small thing to step up to serve your community in a more time and energy consuming way, but to do so knowing the vitriol you could face, because your community needs you (which is not to say it is owed you).

I’m centering that. Whatever that is. That’s what can’t be taught, nor bought, nor manufactured.

I’m centering my community.

Will you join me?

Vote Row A.

ID:

Photo 1: a child’s wooden easel with primary colored clips in a driveway holds paper that reads “vote row a” in patterned stickers.

Photo 2: nine women in matching blue shirts cheer in front of Town Hall.

END ID

It’s time to vote 🗳

💙 What are you centering?

I’m centering *every* single child in our community.

I’m centering commitment to excellence.

I’m centering experience.

I’m centering compassion and care.

I’m centering science. Facts. Comfort and belonging — true belonging.

I’m centering trusted leadership.

I’m centering progress.

And in doing so I’ve found myself centering nine women on the top of the @NewCanaanDemocrats’ ticket.

Nine women I could not be more proud of, in fact.

It’s no small thing to step up to serve your community in a more time and energy consuming way, but to do so knowing the vitriol you could face, because your community needs you (which is not to say it is owed you).

I’m centering that. Whatever that is. That’s what can’t be taught, nor bought, nor manufactured.

I’m centering my community.

Will you join me?

Vote Row A.

ID:

Photo 1: a child’s wooden easel with primary colored clips in a driveway holds paper that reads “vote row a” in patterned stickers.

Photo 2: nine women in matching blue shirts cheer in front of Town Hall.

END ID

Why is some people’s comfort > other people’s survival?

ID: screenshot of three of my tweets.

Slide 1: I get it. You go about your day, feeling emboldened each week you don’t get covid. You see others are more comfortable and you take off your mask, get closer. Because you don’t see those of us who’ve had to remain inside. Scratch that, we’ve been erased. We can’t leave our homes.

Slide 2: It’s not about avoiding infection so you don’t get sick 🤦‍♀️ it’s about avoiding infection so you don’t get others sick, and contribute to community spread, and make the community less safe, and put strain on hospitals, and, and, and….

Slide 3: It’s not about your comfort.

END ID

Why is some people’s comfort > other people’s survival?

ID: screenshot of three of my tweets.

Slide 1: I get it. You go about your day, feeling emboldened each week you don’t get covid. You see others are more comfortable and you take off your mask, get closer. Because you don’t see those of us who’ve had to remain inside. Scratch that, we’ve been erased. We can’t leave our homes.

Slide 2: It’s not about avoiding infection so you don’t get sick 🤦‍♀️ it’s about avoiding infection so you don’t get others sick, and contribute to community spread, and make the community less safe, and put strain on hospitals, and, and, and….

Slide 3: It’s not about your comfort.

END ID

We are growing wearier by the day as those with (evidently) less to lose become emboldened by their relative sense of safety.

ID: screenshot of my tweet from 12:26 pm that reads, “Idk how else to explain that *all* of the public health messaging is directed toward those deemed “immunocompetent” and that any surprise related to immunocompromised people’s realities is due to the erasure of our experiences. We. Are. Still. Not. Safe. And less so by the day.” END ID

We are growing wearier by the day as those with (evidently) less to lose become emboldened by their relative sense of safety.

ID: screenshot of my tweet from 12:26 pm that reads, “Idk how else to explain that *all* of the public health messaging is directed toward those deemed “immunocompetent” and that any surprise related to immunocompromised people’s realities is due to the erasure of our experiences. We. Are. Still. Not. Safe. And less so by the day.” END ID

For the first year ever I did not have an October slide* in 2019 and it was the first time I had hope that my future would not only be defined by decline and loss. That maybe my life would be more than silver linings and small joys. I could pursue loftier goals like finally going back to school. I began to consider what regular work could look like for me.

I held onto the strength I had gained in 2019 and early 2020 for as long as I could into the pandemic, but the inaccess to healthcare and the kind of life that kept me strong was no match for the progress I had made. Slowly but surely I lost it all, and the flare became further and further exacerbated.

People ask if I’m disappointed that we didn’t have our wedding and aren’t moving on with our lives as a married couple and while feeling stagnated and stuck surely sucks, what I am most devastated by is how sick I am again and how unlikely it is that I’ll ever get back to the baseline that I had achieved by February of 2020.

And instead of being met with curiousity if not compassion, I am seen as:

- the reason the seemingly nondisableds’ “liberties” and “normalcy” are threatened;

- a burden to accommodate;

- a “hypochondriac” (a word we will save for another day’s discussion);

- A “sheep” “indoctrinated by communism and governmental control” (we can talk about your body being politicized as you are denied the language to speak of your body politically another time, too, or why, as a friend put it, “something so consequential as covid precautions has been made an arbitrary symbol of identity”);

- a grotesque incubator of worse variants;

- expendable and unworthy of ICU care;

- and much more!

Listen. I understand people wanted to get back to their lives because I am desperate to do the same. Perhaps I will never wrap my head around the transaction: my body for yours. It’s a lot to reconcile day after day, as I get sicker and sicker holding up my end of the “bargain”.

*This term describes the increase in symptoms many patients with POTS and/or autoimmune diseases experience when the weather changes each fall. The current hypothesis is that our mitochondria are unable to appropriately respond to weather.

For the first year ever I did not have an October slide* in 2019 and it was the first time I had hope that my future would not only be defined by decline and loss. That maybe my life would be more than silver linings and small joys. I could pursue loftier goals like finally going back to school. I began to consider what regular work could look like for me.

I held onto the strength I had gained in 2019 and early 2020 for as long as I could into the pandemic, but the inaccess to healthcare and the kind of life that kept me strong was no match for the progress I had made. Slowly but surely I lost it all, and the flare became further and further exacerbated.

People ask if I’m disappointed that we didn’t have our wedding and aren’t moving on with our lives as a married couple and while feeling stagnated and stuck surely sucks, what I am most devastated by is how sick I am again and how unlikely it is that I’ll ever get back to the baseline that I had achieved by February of 2020.

And instead of being met with curiousity if not compassion, I am seen as:

- the reason the seemingly nondisableds’ “liberties” and “normalcy” are threatened;

- a burden to accommodate;

- a “hypochondriac” (a word we will save for another day’s discussion);

- A “sheep” “indoctrinated by communism and governmental control” (we can talk about your body being politicized as you are denied the language to speak of your body politically another time, too, or why, as a friend put it, “something so consequential as covid precautions has been made an arbitrary symbol of identity”);

- a grotesque incubator of worse variants;

- expendable and unworthy of ICU care;

- and much more!

Listen. I understand people wanted to get back to their lives because I am desperate to do the same. Perhaps I will never wrap my head around the transaction: my body for yours. It’s a lot to reconcile day after day, as I get sicker and sicker holding up my end of the “bargain”.

*This term describes the increase in symptoms many patients with POTS and/or autoimmune diseases experience when the weather changes each fall. The current hypothesis is that our mitochondria are unable to appropriately respond to weather.

happy labor day lol. if you’re seeing this, but haven’t seen yesterday’s post — a time sensitive mutual aid request — please check it out, and comment/share/contribute as you are able 🖤

ID: Screenshots of my tweets.

Slide 1: 5 facts with pink annotations.

1 in 3 Americans had covid, according to models, by the end of 2020. ^1

1 in 512 Americans have died of covid. ^2

People like me are 485 times more likely to get severely ill and/or die. ^3

About 1/3rd of covid patients develop long covid. ^4

The pandemic is not over. ^5

*Sources cited in pinned comment.

Slide 2

If you have convinced yourself the pandemic is over, that is your luck and privilege (and ignorance) talking directly in the face of C19 variant mu, which— according to the WHO last week— “has a constellation of mutations that indicate potential properties of immune escape.”1/5

Slide 3

Laboratory data has shown that the likely more transmissible mu variant is able to evade certain antibodies, including antibodies induced by vaccines. (Vaccines are one mitigation strategy that work best with other layers of precautions, and require respect of the virus!) 2/5

Slide 4

This is the fifth “variant of interest” produced by unsustainably demanding societies that value production over humanity, and anti-compassionate communities disinterested in protecting every single neighbor no matter their risk status — including unvaccinated children. 3/5

Slide 5

This deadly combination not only makes the “end” of the pandemic less of a possibility with each passing day, but actively makes life and survival harder for those who do not have the luxury of pretending covid is no longer a grave concern. 4/5

Slide 6

Relatedly, if you have today off of work due to the holiday: thank a union. AKA we do have some power and agency within the constraints of capitalism when we work together as a collective. 5/5

END

happy labor day lol. if you’re seeing this, but haven’t seen yesterday’s post — a time sensitive mutual aid request — please check it out, and comment/share/contribute as you are able 🖤

ID: Screenshots of my tweets.

Slide 1: 5 facts with pink annotations.

1 in 3 Americans had covid, according to models, by the end of 2020. ^1

1 in 512 Americans have died of covid. ^2

People like me are 485 times more likely to get severely ill and/or die. ^3

About 1/3rd of covid patients develop long covid. ^4

The pandemic is not over. ^5

*Sources cited in pinned comment.

Slide 2

If you have convinced yourself the pandemic is over, that is your luck and privilege (and ignorance) talking directly in the face of C19 variant mu, which— according to the WHO last week— “has a constellation of mutations that indicate potential properties of immune escape.”1/5

Slide 3

Laboratory data has shown that the likely more transmissible mu variant is able to evade certain antibodies, including antibodies induced by vaccines. (Vaccines are one mitigation strategy that work best with other layers of precautions, and require respect of the virus!) 2/5

Slide 4

This is the fifth “variant of interest” produced by unsustainably demanding societies that value production over humanity, and anti-compassionate communities disinterested in protecting every single neighbor no matter their risk status — including unvaccinated children. 3/5

Slide 5

This deadly combination not only makes the “end” of the pandemic less of a possibility with each passing day, but actively makes life and survival harder for those who do not have the luxury of pretending covid is no longer a grave concern. 4/5

Slide 6

Relatedly, if you have today off of work due to the holiday: thank a union. AKA we do have some power and agency within the constraints of capitalism when we work together as a collective. 5/5

END

🚨 Mutual aid request 🚨

I am supporting a person in Texas in need of an abortion.

If you are able to donate any amount, please do, and please share this post with your networks.

Swipe for a screenshot of my venmo @ alyssa-mackenzie — you can find the link in my bio as well.

I am passing along all donations directly to this person, whose privacy warrants utmost respect.

Stay safe, friends 🖤

ID

Slide 1:

A picture of my sister and I photographed with the HUJI app so this post isn’t immediately shadow banned. We are sitting in a moving convertible wearing sunglasses, she in a jumpsuit and me in overalls. We are making the exact same expression with our lips barely pursed into a smile. I am wearing a hat and Cayla holds two blankets.

Slide 2:

Screenshot of my venmo qr code.

END ID

🚨 Mutual aid request 🚨

I am supporting a person in Texas in need of an abortion.

If you are able to donate any amount, please do, and please share this post with your networks.

Swipe for a screenshot of my venmo @ alyssa-mackenzie — you can find the link in my bio as well.

I am passing along all donations directly to this person, whose privacy warrants utmost respect.

Stay safe, friends 🖤

ID

Slide 1:

A picture of my sister and I photographed with the HUJI app so this post isn’t immediately shadow banned. We are sitting in a moving convertible wearing sunglasses, she in a jumpsuit and me in overalls. We are making the exact same expression with our lips barely pursed into a smile. I am wearing a hat and Cayla holds two blankets.

Slide 2:

Screenshot of my venmo qr code.

END ID

What’s the violent feeling called when you know you’ve pushed yourself too far but you don’t have PEM yet? ETA: PEM is Post-exertional Malaise and a hallmark of autoimmune disease AND long covid.

Anyway. Guess this is a tweet dump? Also, this week @allkindsaccessibility taught me image descriptions do not need brackets. So…

ID: screenshots of 10 of my tweets

Slide 1:

Your disabled friends know what you’re saying about covid, masking, and other mitigation strategies in terms of our safety when we’re not in the room. We get a lot of practice parsing out who is safe versus who is not. We see you, and to say we are unimpressed is to be polite.1/2

Slide 2:

Y’all sound quite health freedom, wellness mommy blogger adjacent, if you’re wondering how you’re being perceived. Looks like their anti-science propaganda got a hold on your independent thinking, huh? Yikes! Embarrassing. Guess we’ll see you later when you learn the hard way.2/2

Slide 3:

It’s okay if you’re not knowledgeable enough to understand why we still need to be masking, especially indoors. That’s (hopefully) not your job. But being uninformed does not mean you should question and derail the safety of others’ by insisting we “can’t do this forever”… 1/5

Slide 4:

Trust me: high risk folks don’t want to do this forever either. Mitigation strategy burnout should not be a good enough reason to stop caring for your ENTIRE community. It’s not a good enough reason to recenter those who think they’re not at risk. (That’s an illusion btw.) 2/5

Slide 5:

Just because you’re done trying to convince the unvaccinated to get the vaccine doesn’t mean high risk folks are suddenly safe enough for us to drop precautions. Like, you see how that is actually a “your ego thing” and *not* a basis for public health policy changes? 3/5

ID continued in comments below.

What’s the violent feeling called when you know you’ve pushed yourself too far but you don’t have PEM yet? ETA: PEM is Post-exertional Malaise and a hallmark of autoimmune disease AND long covid.

Anyway. Guess this is a tweet dump? Also, this week @allkindsaccessibility taught me image descriptions do not need brackets. So…

ID: screenshots of 10 of my tweets

Slide 1:

Your disabled friends know what you’re saying about covid, masking, and other mitigation strategies in terms of our safety when we’re not in the room. We get a lot of practice parsing out who is safe versus who is not. We see you, and to say we are unimpressed is to be polite.1/2

Slide 2:

Y’all sound quite health freedom, wellness mommy blogger adjacent, if you’re wondering how you’re being perceived. Looks like their anti-science propaganda got a hold on your independent thinking, huh? Yikes! Embarrassing. Guess we’ll see you later when you learn the hard way.2/2

Slide 3:

It’s okay if you’re not knowledgeable enough to understand why we still need to be masking, especially indoors. That’s (hopefully) not your job. But being uninformed does not mean you should question and derail the safety of others’ by insisting we “can’t do this forever”… 1/5

Slide 4:

Trust me: high risk folks don’t want to do this forever either. Mitigation strategy burnout should not be a good enough reason to stop caring for your ENTIRE community. It’s not a good enough reason to recenter those who think they’re not at risk. (That’s an illusion btw.) 2/5

Slide 5:

Just because you’re done trying to convince the unvaccinated to get the vaccine doesn’t mean high risk folks are suddenly safe enough for us to drop precautions. Like, you see how that is actually a “your ego thing” and *not* a basis for public health policy changes? 3/5

ID continued in comments below.

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