🧵A message from
@SFdirewolf
:
"Hi everyone. Life sure comes at you fast. This is my 4th week in the ICU and I hope to be discharged shortly. My body has gone through the wringer and I will need months to recover and adapt to an entirely new way of living.
Hey y'all I've been in communication with
@SFdirewolf
during a traumatic time for her. Please let her rest & heal.
Here's a direct quote from her that she's asked me to tweet out "People who are calling the ICU on my behalf can take my name out of their mouths." -
@SFdirewolf
RAGE🧵🔥I am seething that this is a message I *even had to draft* at all on behalf of Alice
@SFdirewolf
who has asked me to share this. Some of you need to check yourselves immediately. This statement is not up for discussion.🔥
1.) Support your local blood bank 🩸💉
2.) Encourage people to pre order my upcoming memoir because honestly this book is one of the main things (other than family) that is giving me life and motivating me right now
🐯 Year of the Tiger
🗓️ Out 9/6/22
I also cannot actually believe I need to add this too: she owes no one an explanation or justification about her current health status because she is prioritizing her health. You, your work, your requests and asks, all of that can and will wait.//end 🧵
Things feel very precarious and scary right now as I figure out all the changes and challenges before me. Thank you all for your well wishes and support. If you want to do something, here are 3 suggestions:
Alice would like everyone to know that other requests including email or communications are taxing on her energy and stamina at this moment. It is not conducive to her recovery. Y'all look - this isn't even disability justice. This is about caring. And that shouldn't be radical.
Waiting means *do not* follow-up because she is well aware of her inbox and will be replying to emails & other messages at her own pace. Waiting means instead of centering yourself and your asks, and "the work" actually, just back off. The work right now is her healing & rest.
Alice just got back from 4weeks in the ICU. There are some major life changes she is managing with her family and those around her.
She respectfully asks that folks who may be waiting on a response from her related to DVP blog posts, speaker queries, and other asks - to WAIT.
(My role as a support has *only* been to streamline communications between her and her team at Penguin, Barclay, and others as she asks of me. I am NOT going to tolerate the disrespect of my friend and big sis 🐅. My role is about shouldering some of the labor so she can heal.)
Hi. I've been working in coordination with Alice's team on all book & community events. As 'younger 🐅 sis' my priorities:
1.) reflect back to Alice all the the love and shine in this moment
2.) to support giving her & her family space to prioritize Alice's care.
with love xo
FYI, during my recovery, I’ve entrusted Sandy Ho (@ NotYourAvgHo101) to take the lead on events related to my memoir Year of the Tiger: An Activist’s Life. These plans will be managed by Sandy and my editor/publishing team. 📖 🐅
#YearOfTheTiger
Over the past few weeks I have been in direct contact with Alice and her family. And I will share more updates from Alice later.
For now and in the coming weeks and months - I ask that our community *please* continue to respect her family's request for space. Thank you.
@shruti_rajkumar
Ugh sorry this happened to you. A few years ago they reached out wanting to include me in a social media campaign as a disabled queer AsAm. After checking w/DC disabled queer friends I said “all of me or nothing!” (So, they got nothin)
It was so wonderful attending SF Zine Fest, a free and mask-required event, where I met
@thefliang
who illustrated the Food Heaven section for
@SFdirewolf
memoir
#YearOfTheTiger
. Thank you Felicia!!
public health researchers please take note. yes, all of you. because all of you are doing research that is relevant to and involves disabled people - including wheelchair and other mobility-aid/assistive device users.
We do not use the wording confined to a wheelchair or wheelchair-bound. People use wheelchairs for independent mobility. If a wheelchair is needed, and the description is relevant, say why. The term wheelchair user when relevant is OK.
Oh so now we’re loosening? Because we were being so rigid before that I couldn’t even tell what policy people were abiding by before. Thanks for clarifying.
Breaking News: The CDC is expected to loosen guidelines for when and where Americans should wear masks, allowing most people to go without them indoors.
Tonight
@SFdirewolf
of
@DisVisibility
will be recognized as the Community awardee
@APAICS
gala. I'm honored to attend and will be accepting this award on her behalf! It is a privilege to celebrate a disabled oracle, cyborg icon, fellow tiger, and dear friend. 🐅🐅
Some of you apparently need to hear this but if your access plan includes the words “security guards have done a chair carry” then that is not it fam.
That’s more akin to one of those trust games I have never wanted to play.
"Now the vaccines have arrived, but the rollout is flowing through the familiar tributaries of ableism, ageism, sizeism and racism that have been feeding the ocean of death in this country all along."
Is academia ready to have a convo about why separating access needs for students from access needs for faculty & staff contributes to a mess yet? If we want to actualize a learning community then let’s do that.
The only back-to-school prep I’m interested in.
Congrats to
@DisVisibility
who was recognized with the community award
@APAICS
29th gala. It was an honor to accept the award on Alice’s behalf, meet Dr Biden and share Year of the Tiger with the First Lady.
I’ll see you again in a few months friend!! 💞🐅
It was an honor to work with this year's grantmaking committee to arrive at this incredible cohort of disabled-led organizations. Much still needs to be shifted within philanthropy to resource disability justice futures, and we have only begun. More to come from the DIF in 2023!
"The DIF’s newest cohort includes organizations across the country doing a broad range of work, from domestic and sexual violence prevention to immigrant rights and disaster relief efforts—and working at the intersections of movements."
More below!
I want to know who was in the decision making room when the theme for
#IDPWD
was decided. “Post-COVID era” is neither the present nor the future reality for the international disability community.
Can awareness days name the reality first? And then do the envisioning?
I know the CDC recently invited disabled advocates to their table. I hope that someone on their team is listening to ours from tonight's
#CripTheVote
chat.
If you're a disabled policy wonk, advocate and/or organizer out there who may be interested in disability-led research within academia (yes! those 2 things *can exist* together) might I suggest you consider applying. My DMs are open for follow-up Qs.
As the pandemic continues with long-term impact on our communities, people with disabilities continue to sound the alarms and support each other with little to no resources.
In response, we’re excited to announce the Disability Frontlines Fund at TWF:
I just searched "disability" on a funder's website and the outcome was: Sorry, your search returned no results. Try revising your search terms and/or filters.
Nahhh y'all gotta revise your grantmaking strategy and get back to me.
(I shouldn't be surprised by now, and yet!)
#SuckYouPhilips
why is the contingency plan for disabled people always the one we have to come up with for ourselves?
Good article with quotes from
@IngridTischer
and
@SFdirewolf
about this absolute mess
Beverly Cleary's Ramona Quimby series had a lot to do with how I learned to balance a flashlight and a book, while listening for my mom's footsteps to tell me to go to bed.
MA home based health care workers (i.e. PCAs) became eligible for the vaccine today as part of Phase I.
my PCA will be getting her first COVID-19 vaccine next monday, a relief. But navigating the system is *so* inaccessible.
Must read by
@andraealavant
“Now is the time to employ disabled people, to tell authentic stories, and to ignite change for the 1.3 billion disabled people around the world.”
Thank you
@DisVisibility
for your editing prowess, your patience, and this space to share my Asian queer crip trajectory. There’s no one else I would have trusted this story with. 🐅🥮
#TurningRed
One more big cat nap until Year of the Tiger by
@SFdirewolf
arrives!!
I am so proud of Alice!!! She has offered magic for all of us. 💫🐅
So many fave sections within, but for now I hope the entire journalism field pays attention to “Tiger Tips for Interviewing.”
The disability justice coloring book I ordered from
@sinsinvalid
arrived! Each page was illustrated by a different artist. The page for the letter J was illustrated by Sky Cubacub. (+alt)
How else to close out a community-led book launch of Year of the Tiger by
@SFdirewolf
than with a community book reading?!
Join us
@LongmoreInst
as Alice's friends from every sector and movement read passages, and celebrate her work!
Register:
Congrats on this milestone
@DisVisibility
!
Hey
#DisCo
Let’s send in our thanks and gratitude that this absolute treasure has given to our community.
(Especially all you students who have learned from and cited
@DisVisibility
)
I'm so excited to share that I'll be participating in
@ObamaFoundation
's Leaders USA program this year! This cohort is an incredible group and I look forward to bringing these learnings to my work. Learn more about all of us by visiting:
We’ve got exciting news! Our newest cohort of
#ObamaLeaders
is here! 🎉
Take a moment to meet all 100 members of the inaugural Leaders USA 2023 cohort and learn more about their impactful work:
Anyways, this is for disabled people who will always be caught in that hard place with family (chosen and not). I am sending a nod and fist bump your way. Always holding space for our tiredness and rage. 8/8
an avocado pit I've been keeping in the dark in damp paper towels for a month has finally cracked and there is a tiny root. also that is how my summer is going.
Of all the exciting news I have received over the past few weeks - the biggest one for me has been knowing an apartment I’m renting this fall will install a grab bar in the shower. & do it without my having to dig up my entire medical file for “proof.” 😭🙏🏼
my disabled friends and I who depend on vents, BiPAPs, and CPAPs, have WAITED thru a pandemic. WAITED to have our lives prioritized for access to PPE. WAITED to have our lives prioritized for access to vaccines.
we do not want to WAIT to be able to breathe.
#SuckYouPhilips
A small 🧵 on the clarity I have in this ongoing messiness:
Today I have family returning from a vacation cruise in Florida. yeah, you read that right.
These past few weeks have been difficult to hold all the not knowing and the knowing too much in one container. 1/8
A letter to Asian American Disabled Women and Girls from
@DisVisibility
:
"Do not feel obligated to represent, speak on diversity, intersectionality, or ‘what it’s like to be Asian American and disabled.'"
thank you Alice for submitting!
I always knew why disabled people are never at the proverbial table at the beginning of anything. Recent comments from
@CDCDirector
confirmed it's partly because we are thought of as "...people who were unwell to begin with..."
the other parts? trash ableist people & policies
On this Disability Day of Mourning I am angry and grieve disabled people killed by systems and beliefs that sound like "good intentions." I think often of the Sagamihara massacre, and the names we are only now beginning to learn. A piece I wrote from 2018:
Thanks everyone for the bday wishes! I’m wiped and exhausted but in the best way! Ready for another year around the ☀️
(If you’re curious about the origins of
#WestwardHo
you should probs read Year of the Tiger by
@SFdirewolf
😉😎🐅)
I've been thinking about disabled people in these locations who also use CPAPs, BiPAPs, and oxygen-giving vents that were impacted by the Philips recall mess.
#SuckYouPhilips
As wildfires burned across a dozen Western states, the smoke-filled skies led to health concerns: States and counties issued public health advisories warning people with heart and respiratory issues, as well as older residents, to stay indoors.
My 🦄 onesie is ready for tonight's Tiger Talks hosted by
@LongmoreInst
.
Can't wait to be in convo w/
@NonprofitAF
: "Dismantling the Culture of Professionalism."
Join this chaos while we celebrate the work of
@DisVisibility
Year of the Tiger!
I am definitely eating my stress right now and doing it with all the pomp of pride. This is a 7 layer caramel cake that a kind & generous friend sent. Each layer is a different fruity flavor: blackberry, blueberry, lime, lemon, orange, and raspberry. 🌈
did I just submit a paper for class that tied Star Trek to disability funding? Absolutely. Cuz we are at that point in the semester where I just need to get words on the page. Spring 2023 can't come soon enough.
Presented my capstone! I'm done! I compared a Participatory Budgeting model with a Participatory Grantmaking process, and the way each was used to address mental health & substance use challenges.
Laying down for 500 hrs (or reading all the novels I have neglected for 3 yrs).
What is it about riding on Amtrak that compels me to write out my long rambly thoughts. In particular the Quiet Car always does this to me! There's so much to absorb and chew on for the remainder of this 5 hr train ride: District of Chaos 🚆 Boston.
Really thrilled to see this write-up and a publisher supporting community-led book launch events in this way. This is what it's about - celebrating & supporting Alice - in the ways she has asked.
While disability activist Alice Wong (
@DisVisibility
) recovers from a hospital stay, friends and fellow activists are stepping in to help launch YEAR OF THE TIGER, her Kirkus-starred (⭐) memoir, which comes out 9/6.
@VintageAnchor
Thank you for this article
@shruti_rajkumar
. As I process
@judithheumann
's passing I appreciate the many articles & interviews of her that exist, and her unwavering stance that until disability rights are not treated as fantasies or theoreticals - we all have much work to do.
The ADA deserves to be celebrated. But it can't be seen as the final destination for disability rights. We deserve more.
Check out my recent NPR article!Honored to have been able to interview
@judithheumann
@NotYourAvgHo101
and David Capozzi for this❤️
ummm
@Philips
when you recall devices that are literally oxygen providing & life giving I don't think the instructions for "Patients, Users, Caregivers" should be to just wait a few weeks re what next steps we can take.
I grew up watching the Jetsons. Definitely disappointed that the future I thought I would have is still just trying to MAKE A PLAN for basic transportation access for disabled people right here on the grounds of planet earth.
Senate shoots down an amendment from Sen. Duckworth which would have required transit agencies receiving accessibility grants to make a plan about how they would maximize accessibility for people with disabilities and address equity.
what else is there to say? LFG!!! Here's a love-note thread for
@SFdirewolf
.
When broken systems we struggle to survive in tell disabled people we don't deserve to thrive - we dig into collective community care to love fiercely. Our people deserve nothing less.
Alice Wong has given all of us so much --
1.) as a co-organizer of DIS from the start
2.) as co-lead in the
#AccessIsLove
campaign w/
@miamingus
&
@NotYourAvgHo101
3.) always sharing her platform to uplift
That survivorhood is the exasperated listening for "pivoting to in-person only." It's being baffled by allies who can spell solidarity but can't use it correctly in a sentence. 7/8
My tiger babies have arrived and they are magnificent! 🐅📚🍊
Ebook, paperback, audiobook available 9/6 from
@vintageanchor
!
Pre-order link, book events, reviews and more:
#YearOfTheTiger
Some day I’ll write about that time a former employer had me sit through this very “training.” Except it was just me in the room cuz where HR typically is was of course inaccessible.
Years later the silence as I stared directly at the HR person afterwards still makes me sick.
I'm no stranger to feelings of isolation or being isolated. This time it feels different. It is deeply uncomfortable and strange. And yet it keeps loudly insisting "you have known this feeling all along."
I think it's crip survivorhood? 5/8
When we say policy recommendations and solutions should follow the lead of disabled lived-experiences, here's what we mean! These are important policy recs that we should all be working towards for a future w/disabled people & care workers.
On this
#InternationalWomensDay
I am thinking about a world where we give Black disabled women their flowers in life as we do in their deaths. Shout out to the art and digital collages of
@jtknoxroxs
who does this all year round!
this essay on
@DisVisibility
by
@pipagaopoetry
is beautiful and I learned so much more about Chinese language! "Language is a playground; words are stim toys. It doesn’t make sense for only me to play with them."
I have my "wellness check" with my LTSS coordinator in 30 min. My response to every question is going to be "I'm alive despite [insert description of current chaos + opinions on current chaos]" I hope she's got a lot of space on those forms.
Look what’s arrived for me today! The Future is Disabled by
@thellpsx
!! 🍄🪷🦄🌸💫
I’m so excited to be writing the discussion guide for this book out Oct 4th!
📖
getting out the post it notes & highlighters - time to dig into this future.
Ok
@Philips
. I wanted to give you 24 hrs to realize this website is the same link I tweeted originally.
Let's both do checks. I'll check the top of the page *yup, still the same unhelpful link* and you check for accountability of this mess. Aaaaand GO! ... I'll wait.
@NotYourAvgHo101
Hi Sandy. Thank you for reaching out. You can find more information on our dedicated support page: . Please ensure that you are on the right page for your location, by checking on the top of the page.
online activism is: valid, legit, powerful, movement-building, community care, effective, real, necessary, righteous, accessible, loud, and still - activism.
I invite you to share space with
@Ohheyteigh
at the next
#DIS2021
sesh ⬇️
What incredible people to be among and I'm excited for all of the dreaming and co-scheming to come! Thank you to the Futures Fellowship and especially the first cohort of disabled creatives for leading the way! 💫
Together with
@FordFoundation
, we are excited to announce the 2022
#DisabilityFutures
Fellows—a grant administered by
@USAforART
that increases the visibility of disabled creative practitioners and elevates their voices individually and collectively.
That survivorhood is my response to "return to normal." The response to disappointments I try to get over quickly because I know the next one will be worse. 6/8
Lovingly vigilant means I put my trust in collective care and access. Registering for booster shots. Getting home test kits. Masking. Checking-in and asking about rest. Sending research studies highlighting sections that point to data. Relieved that I (and we) have not..yet. 4/8
How did I only just discover this gmail option to schedule the sending of emails. Not a single one of you pulled me aside and thought to suggest this absolutely life-altering-hack?!
The heartbeat of this funding begins w/knowledgeable disabled people with community relationships in tech & disability justice that led to this incredible cohort!
The DIF
@BorealisPhil
and
@FordFoundation
is honored to learn from their leadership:
Have you registered yet?! I’ll see you next week for the first Year of the Tiger community book talk! Let’s celebrate this incredible memoir by
@SFdirewolf
🎉🐅
Registration info ⤵️
NEXT WEEK: Weds, September 7th at 4pm PT/7pm ET: Tiger Talks
#1
- The Form of Memory with
@imontheradio
,
@esmewang
, and
@jonnysun
.
We'll be giving away books to 20 attendees! ASL/CC provided.
Register here:
back at this build. So fascinating to watch the inner gears of this Lego typewriter work when the keys are pressed.
on pg 111 of 250 in the instructions booklet.
community knowledge is powerful because we know it's beyond data analysis. for many disabled people surviving has required knowing this data and the implications intimately. read these stories collected by
@DisVisibility
hi everyone! I'm Sandy. Queer disabled Asian American, she/her pronouns. I'm HoH, a wheelchair-using O.I. and also have ADHD.
This year as I think about Visibility I'm considering the ways crip & queer communities approach disclosure of our identities.
#30DaysOfDisabledPride
Today's prompt is:
Visibility time! Intro yourself with your pronouns, queer identity(ies), disability(ies), and anything else you'd like to share!
Me? I'm Jules, they/them, I'm nonbinary and pansexual, and I'm late-Deaf and chronically ill.
#30DaysOfDisabledPride
I look forward to sharing some thoughts on the legacy of telethons and how disability justice guides us to collective joy & liberation in response. Then delving further in conversation w/Bridgit and Ryan! Hope you’ll join us for this year’s
@LongmoreInst
lecture. (+ Alt text)
To top off this weighty week I am giving a guest lecture in a genetics counseling class first thing in the morning..! The instructor assigned
@DisVisibility
anthology: First-Person Stories from the Twenty-First Century, so we are already off to an excellent start 💯
Look what came in the mail! As I wrap up my MPP capstone paper, prepare to present it 🎓, and move thru work deadlines— it’s like someone somewhere just knew ✨💫
Also perfect timing for an upcoming DIF team retreat. Shoutout to The Nap Ministry!
They are seemingly unconcerned about their health or whatever consequences await, but I still choose to be lovingly vigilant. Cuz this is family. And because for me, this is partly what it means to show-up as a disabled family member. 3/8
Had I gotten this letter from
@SFdirewolf
when I first reached out in 2011-2012 I’m not sure I would have been ready to receive this message! (No matter how much I probably needed to hear this then). I trust disabled oracles to know when to show up 🐌 🙏🏼⏳
@DisVisibility
A2: I’ve also heard that some local Council on Aging have been calling up homes where members of the household are disabled/elderly and offering to send free COVID test kits. This is why filling out the census remains important!
#CripTheVote
I’m leaving my place tomorrow to go do a series of mundane errands for the first time in 2+ months. Like drop off snail mail and pick up library books etc. maybe I’ll get stuck in a snow pile curb cut. Maybe I’ll order tea to go at a cafe. The wild mundane possibilities!
We're thrilled to launch of The Disability x Tech Fund, a collaboration between Ford's Technology & Society Program and
@BorealisPhil
's Disability Inclusion Fund, to support progress at the intersections of
#tech
,
#disabilityrights
and
#disabilityjustice
.
Congrats to everyone who was part of this First Monday journal issue "This Feature Has Been Disabled: Critical Intersections of Disability and Information Studies" co-edited by
@gracenbrilz
&
@crystaljjlee
!