Social media can be trash but it’s not *all* trash. I learn so much from people I follow on Twitter such as Tory Cross. Here is an interview with Tory on her work as a political organizer and the fight for vaccine equity in California.
Interview with Tory Cross
Please tell me a little about yourself!
Hi! I’m Tory Cross (she/her), and I’m a 27 year old disabled queer survivor and a digital/distributed organizer. I was diagnosed with Ehlers Danlos Syndrome when I was 7 years old, and I was really lucky to be diagnosed so young since it takes most people decades. I was only diagnosed so young because it overlapped with my mom being diagnosed when she was in her early 30s. I also have migraines and POTS and some mystery lung condition that we refer to as asthma and c-PTSD from childhood trauma. I personally consider my c-PTSD a disability because it’s had an enormous impact on my life but I’d never tell anyone else how to think about their own mental health.
Growing up as a queer disabled survivor in a terrifyingly white supremacist homophobic Christian-supremacist area was horrifying in every possible way, and I learned extremely early that if I didn’t figure out getting out of there, I wouldn’t make it very long. Especially because my hometown approached every problem as you either handled it through prayer or silence and gritted teeth. Silence and gritted teeth doesn’t work very well when you break your back! (Literally, I broke my T12 vertebrae at some point during my childhood and didn’t find out until college because I was just so completely disconnected from my body).
I live in California with my partner and my two cats!
I know you mostly from your work as a political organizer during the 2020 Presidential election. How did you get involved in organizing and what were your experiences like 2019-2020 including the run-off elections in Georgia?
I think to some extent I’d always been organizing, I just didn’t know that there was a name for it. I started electoral organizing in April 2019 specifically when I happened to see a tweet from Secretary Julián Castro’s organizing director about how to volunteer! I didn’t really know that people could volunteer for candidates, and I loved how progressive Julián’s platform was. I’d been only sporadically working for two years before that because of overlapping health crises, and I was only working about 19 hours/week when I started volunteering for Julián.
It was amazing, to share space with progressive folks and to be able to contribute to a presidential campaign. I fell in love immediately! I had all these skills from being a disabled person online. I’ve said before that everything I’ve ever learned about organizing I learned from being a disabled queer survivor who was really isolated because of my health. Building community and communal power and strength in numbers online were all things I learned from Twitter and Facebook communities. Including #CripTheVote really changed my idea of community and political power.
For Julián, I helped with debate prep, with social media outreach to supporters, with social media policy dissemination. I got to consult on a few of his policies, including his policy for people with disabilities, which was just incredible. After he suspended his campaign, I was a Text Leader for Elizabeth Warren’s campaign, and then I took a break for a couple months before volunteering with Texas Democrats and then joining the staff there through the general election. I then joined Jon Ossoff’s runoff campaign for Senate in Georgia!
I was really lucky that the people I worked with saw me, my whole self, and my experiences, and didn’t try to make me anything I wasn’t. It shouldn’t come down to luck though. Everything I’ve ever learned about organizing I learned from being a disabled queer survivor who was highly physically isolated because of my health. There’s this misconception that online connections aren’t real life, but I’m a real person, and you’re a real person, and we’re talking online. That’s real life! Disabled people are so talented at eliminating that fake line between IRL and online when it comes to community building. I think people who are able bodied or have never been really isolated from their community sometimes find it stilted or difficult to build across digital space, but it’s such a skillset to be able to quickly relate to someone and to connect to them emotionally. Disabled people make great organizers. We’re really good at this!!
What do you love about organizing and getting out the vote? Why does it matter?
So, I grew up in extremely rural Illinois in a VERY Republican district, the most Republican in Illinois and one of the most Republican in the Midwest. I was the weird really political kid in school and even in college, because growing up how I grew up – in a really impoverished place, in a really dangerous household, as a queer disabled kid hiding in the closet both literally and figuratively – I knew that there had to be the possibility for things to be better somehow. I didn’t know how but I knew it had to be possible.
I fell in love with organizing because organizing is all about connecting with people and being part of them building the world they want to live in. I spent a lot of time talking to my therapist about if I was doing something wrong before I was on staff, by doing all that volunteer work instead of trying harder to get a job, and she looked at me and said “You’re feeling fulfilled. That matters so much more.” There’s something enchanting about connecting with someone you don’t know, hearing what their dreams are for themselves, for their children, for their communities, and then building community with them to build that world. I don’t want to over glorify it — organizing is hard and brutal and sometimes absolutely heartbreaking. But every organizer has moments they return to, where a volunteer or a community member kind of sees the world open in front of them. Or at least that’s how I experience it!
It’s hard to put into words how much getting out the vote matters, especially when it comes to making voting and organizing accessible for disabled people. There are so many of us, and when we band together, we grow political power. That’s something I 100% learned from Crip The Vote. We can say, you know, we are here, we have power, we vote, you work for us. But it’s also not enough for politicians or parties to just, like, point at disabled people and say “great go vote!” Even if it weren’t the right thing to do for candidates and state parties and committees, it is politically advantageous for Democrats to dismantle barriers to voting for disabled people! Not all disabled people will vote for Democrats of course but this whole voting block is RIGHT THERE if candidates put in the effort to make it so we CAN vote. Politics is life and death for most people, and when most politicians talk about voting as a sacred duty, it doesn’t make sense that so many barriers that could be removed stay in front of us.
That said, electoral power certainly isn’t the only thing that matters, and it makes me so angry when there are people who talk about voting as the only option. So many communities cannot wait for every 4 years, and nothing made that more evident than 2020.
How have you been coping so far in the past 11+ months into the pandemic in California?
It’s been excruciating. There is so much pain throughout all of this. I have a very small family – only 5 family members – and every single one of them caught COVID. It’s incredibly lucky that none of their cases were super serious, but the terror has been unbelievable. In November 2019, I started having severe trouble breathing, which I’d never had before, and my doctors were pretty sure that I caught a virus that impacted my lung functioning. It happened before COVID was recorded in the US, so it certainly means that if I caught COVID, my risk of death is incredibly high. My partner is healthy and able-bodied but of course there’s also the terror that if he caught it, that he wouldn’t be okay. So I have walked out my front door 3 times since March 12, 2020 – once because of a kidney infection, once because mold exploded in our apartment, and once to get my flu shot. Our apartment is 700 sq. ft, plus like a 10 sq. ft. patio, and we have not left this box in almost a year.
Organizing really helped. The Trump administration left us to die. They left us to die. Which added to all the other atrocities in the past four years. So working to build power, to connect people, to find community, really helped with my mental health.
Also, therapy. So much therapy.
I have walked out my front door 3 times since March 11th.
Once for a kidney infection
Once because mold exploded in our apartment and I’m very allergic
Once to get my flu shot
— Tory Cross 🍑 (@queer_spice) January 26, 2021
How has the pandemic impacted your health and well-being?
There’s all kinds of regular care I’m supposed to get that I haven’t had access to since last March. During a normal time, I see doctors (besides my therapist) approximately 5 times/month, to care for the variety of medical needs that come from my disabilities. I haven’t had a single one of those appointments.
The biggest health issue I had that I did not get adequate treatment for was a kidney infection in April 2020. I had a UTI that I didn’t get treated because I couldn’t go to primary care, and it rapidly infected my kidney. My partner and I sat outside of urgent care for three hours, trying to decide if it was worth the risk for me to get my kidney taken care of. I finally was in such excruciating pain I went inside, and they gave me some antibiotics and sent me on my way. The infection was resistant to the first round, and super thankfully the urgent care doctor called an EDS specialist before prescribing another round, because she almost prescribed me an antibiotic that is contraindicated for EDS because it can cause our tendons (and hearts!!) to rupture. I had to take a less effective antibiotic, and one urgent care doctor called me, saying I should go to the ER because they were so concerned that I would go septic and die, but the other had just called me to say not to go the ER unless it got worse, to weigh against the risk of catching COVID. I stayed home and luckily the antibiotics worked, but it is really something to have two urgent care doctors, fighting about which thing would be most likely to kill me.
I’m a queer, disabled, high-risk California resident with lung problems so serious that I take 3 inhalers a day, and have to inhale every 3 hours.
I am very likely to die if I get COVID.
And now, because I’m 27, we have no idea when I’ll be able to get vaccinated.#HighRiskCA
— Tory Cross 🍑 (@queer_spice) January 26, 2021
On January 25th Governor Newsom of California announced that he would lift the regional stay-at-home orders across the state allowing counties to gradually re-open. In addition to this, there was a major change in vaccine eligibility guidelines in the next round that would go by age versus risk. What was your response to this? How did it make you feel?
It broke me. It doesn’t make any sense, and I have a Masters of Science in Public Health. All of the claims in the past year have been that California will be “Led By Science.” Meanwhile, the state lifted the regional stay-at-home orders shortly after LA changed their air restrictions so that crematoriums could process more death. It made no scientific sense on it’s own and then to couple it with changing the vaccine eligibility to solely age-based? I was appalled.
Disabled people are dying en masse, especially disabled people of color. So many disabled people of color have talked about that the age-based eligibility is already discriminatory to people of color, including this really powerful piece by Drs. Oni and Uché Blackstock regarding that Black Americans should face lower vaccine age cutoffs.
I cried and screamed for days. The original tiers gave me hope for the first time in so long, and then to have those removed without warning, without anything, just felt like the floor fell out from under me, like it fell out from under our entire community, the millions of disabled Californians hanging on by a thread.
My first feeling was being despondent. It was excruciating. I’m so tired of fighting for us to be alive. I took the day off. I stared at the wall for a long time. And then I saw you, Alice, mobilize so fast and I jumped right into it too. I dug into digital organizing, and something that I had learned working in Georgia was that it’s really effective to find organic conversations and communicate with those folks on how to push the Governor and the state Legislature and move forward.
For my #HighRiskCA folks, the most impactful thing we can do right now is contact Gov Newsom’s office with our experiences and show why disabled people need to be prioritized. Contact the governor here: https://t.co/1VZkGkswiz
— Tory Cross 🍑 (@queer_spice) January 28, 2021
On February 12, 2021, the state announced a change in vaccine prioritization, allowing some high-risk groups after three weeks of pressure by various communities. What was your response to that announcement?
It was really hard. I was so grateful that our pressure had worked to some extent, but the list of who would be included was so short. The first information I saw about it didn’t include anything about lung or breathing conditions! Like, Jesus, this is a respiratory illness. I was so happy for the people who would be on the list, but it was such a small percentage of the millions of disabled Californians, and it wouldn’t be until mid-March, and rare conditions wouldn’t be listed, and so much more. It felt like a slap in the face. We had to fight tooth and nail to get any of us reprioritized, and then it was such a limited list, and it was so much farther away than I’d expected.
One of the many upsetting things about the COVID vaccination prioritization in CA is that I had to email my pulmonologist and say – no lung conditions were on the list, but maybe my BMI counts?
Which meant calculating my BMI, an incredibly triggering thing for me.#HighRiskCA
— Tor 🍑 (@queer_spice) February 13, 2021
One troubling aspect from the provider bulletin from the CA Department of Public Health is the start date for vaccinations on March 15, 2021. What are some of your questions, concerns, and thoughts about their new guidelines?
That it starts with “clinical judgment” makes me so nervous. What does clinical judgment mean? Medical ableism, racism, misogyny, fatphobia, transphobia all run rampant and California medical providers are no exception. I’m a fat queer disabled woman – would clinical judgment mean medical providers would decide it’s not worth vaccinating me, because they don’t see disabled people and fat people and queer people as having lives worth living? The bulletin includes that the list of eligible conditions is subject to change. I would hope it could only get more expansive, but our eligibility has already been taken away once, so it certainly could happen again. How does this list work with getting vaccinated at major vaccine sites or at chain pharmacies instead of at our doctor’s offices? What do we have to prove? There are so many questions and there have been no efforts by the state’s administration to answer them or even to anticipate that we would HAVE questions.
In contrast, for example, Washington, DC, has a more expansive list of eligible conditions and a self-declaration policy so people do not have to prove they are eligible to receive the vaccine. Those, at least on paper, are the appropriate steps.
How do you think this update will change your likelihood of getting vaccinated? What are some things you’re doing to access & obtain one?
I have been emailing with my pulmonologist. I happened to have a telehealth appointment with him the same day as the original tiers came out, and I asked what we needed to do. What do we have to do? He felt confident that every frequent patient of his would be able to get vaccinated in 1C, because we all have pulmonary issues! We’re emailing again now, but he has no idea when it’ll be available, and I have to switch to talking to my primary care about it, even though she isn’t who treats my lungs. It’s so complicated, and it is a constant reminder that it never had to be like this.
You have a background in public health and I can’t help but think how the state officials from Department of Public Health really don’t *get* disability. Is that unfair? What are things the field of public health needs to understand more about the lived experience of disability & chronic illness?
Honestly, I think that’s extremely fair. One of the first concepts we learn about in public health graduate school is about Quality Adjusted Life Years, and about how we have to work so hard to prevent chronic illness. Those are the only contexts I remember disability coming up at all in my two years of graduate training.
I specialized in Health Education and Health Communication and we never once talked about accessibility for public health campaigns. We talked some about health literacy, about trying to utilize plain language and not design campaigns at extremely high reading levels, but beyond that, disabled people of so many kinds are left out of public health preparedness, public health planning, public health policy, and public health education campaigns.
I (and so many others!) have said since the beginning that COVID-19 never had to be like this. That all of this, all of it, was preventable. But when public health is not adequately invested in AND when public health leaves out the people most at risk and who have the most knowledge, we end up here.
Tory Cross (she/her/hers) is a disabled queer survivor and an organizer. She graduated with a Masters of Science in Public Health in 2017 from Johns Hopkins School of Public Health, where she focused on public health policy involving poverty and environmental health. Her past work includes policy research and analysis, advocacy, and staffing campaigns. She most recently worked for Jon Ossoff’s successful campaign for the US Senate as a Distributed Organizing Manager. At any given time, she can be found within two feet of a book, a cat, a cup of coffee, or all three.
Support Disability Media and Culture
DONATE to the Disability Visibility Project®