What would happen if we stopped praising people for pushing through and started praising people for taking care of themselves and being mindful of the limits?

I refuse to shut up about the fact that it took the EEOC almost FOUR YEARS to make a determination in my disability discrimination case. Four years where I waited for them to say “yep. You really were discriminated against. Congratulations! Your prize? We give you the right to sue! We know that will take another 3-4 years but you’ve got time, right? It’s not like this discrimination destroyed your career and health or anything” 🫠

Even writing this now, 2-3 years later, my heart just sinks. My stomach drops. The moment my attorney told me about this is etched in my mind as the moment I lost all hope in the judicial system and in justice for disability discrimination in general. I was trying to leverage the privilege I had to sue them and try to make change, but it was just too much. They crushed me with that offer of judgment when I was already wrecked from the stress of the whole ordeal.

So now my former NASA funded PI w/millions in grants who SCREAMED at me simply because I’m disabled, treated me so poorly that other employees were distressed after meetings where they witnessed it, and proceeded to illegally fire me and destroy an academic career I fought for for over a decade, is still out there harming other disabled people. And there’s seemingly nothing I, or maybe anyone, can do. My only power is that I didn’t sign an NDA. The issue is no one cares enough for it to matter

Me to nurse: can you please put on a mask? (Which I had requested and they had done previously)
Nurse standing 2 feet in front of my face: oh! I’m not here!
Me: yes…. You are here
Nurse: *walks out*

Arguing that you aren’t actually present as a reason for not masking is WILD 😅

Even a billionaire couldn’t buy the election in Texas and I can’t stop crying happy tears 🌊

These are so pathetic that they aren’t even offensive and that’s the funniest thing about them.

But it is so incredibly dystopian that someone felt it was a good idea to publicly share them on a government account. It’s also embarrassing for that person 🙈

Do people who often have to fly for work just to have meetings in another location that could easily be done virtually ever think about how much more money they would be making if a large chunk of their salary didn’t go to the costs of travel? 🤔

No get me started on how much time they’re wasting with the travel, not to mention needless carbon emissions 🫠

One great thing about wearing a mask everywhere is that nobody ever tells you to “smile more”

Sometimes I feel like I’m crap at my job because of brain fog, memory issues, the fact that I can’t always have my camera on or often feel “off” due to flares or get distracted due to ADHD. Seeing other clinicians and scientists on social media putting out so much content and I can barely support my head at times.

It just brings on imposter syndrome (and internalized ableism). But then patients stick with me. I watch them improve and start to feel better, even if it’s just via better accommodation and pacing and acceptance.

They seek me out BECAUSE I’m disabled, and accept that I’m not perfect while I model being open about being disabled, being human, all while still fighting the urge to try to present as “perfect” and non-disabled myself at times. It’s actually really beautiful this tiny sliver of disability community and acceptance I’ve cultivated in the world, it’s just not something that can be easily captured on TikTok or in an instagram reel or wherever else

Once I was on a public bus and a man near me started staring at me and masturbating. I publicly yelled about what he was doing and shamed him for it and then told the bus driver but he scurried off while I told the driver. The bus driver was upset I didn’t yell louder (I was at the back) so they couldn’t lock them in the bus and call police.

THAT’s how you handle sexual assault on public transit, @united. Shame on you for making this woman sit next to a man who sexually assaulted her and then putting it on her to report it. A crime happened on your plane and you need to take responsibility in protecting your passengers.

For the first time in my life I just had the thought “I’m pretty damn impressive” and what’s amazing about it is that I’m openly disabled, queer, aggressively accommodating myself, dealing with serious physical and cognitive issues, working part time, and nowhere close to where I was before functioning or status-wise. I never once felt “impressive” back then, working in fancy hospitals and coveted roles, even doing research for NASA or running studies at Northwestern. I’ve never once felt “impressive” before now at any point. And I’m crying because I think I, for the first time in my life, have truly accepted myself for who I am, not for my accomplishments. And I’m sure as hell I would not be here if not for the endless love and boundless wisdom of the disability community right here on twitter. I doubt there is another community in the world where you will you be told that you are loved and valuable exactly as you are, regardless of what you can or cannot do. It’s absolutely beautiful and I am so honored to be a part of it. Only wish is that I got here sooner

“Patients with relevant scientific or medical knowledge were offered access at a substantially reduced rate, including access to almost 100 scientific sessions.”

lol! This guy has the gall to say the conference was somehow accessible because disabled people he deemed worthy had “access” at a reduced fee.

You mean they had to somehow prove themselves to you and then also have enough money to pay for the conference fee, pay for flying there, pay for the hotel, pay for any care they needed to make it work, take time off of work or ask loved ones to to care for them to go, pay for baby sitters or pet sitters or whatever else they needed at home, and THEN get their asses to the conference and tolerate having to navigate it and engage with others for multiple hours every day??

The fact that this person thinks this is what access looks like is legitimately concerning. This is PEAK academic ableism and just wild that he is publicly admitting that this is how things were handled while still trying to claim it was accessible.

In-person conferences are NOT accessible. They are not necessary. They are actively exclusionary and do not effectively progress the field because they create an echo chamber of privileged academics. I can provide numerous citations on this subject. Please stop arguing this is what access looks like, or even quality science. It’s not

In-person conferences are academic ableism on full display and when a conference that covers conditions including severe energy limitations is in-person only it violently communicates just how little they value the voices of disabled people

All of these people defending that in-person conference on infectious disease consequences that was both financially and physically inaccessible to MANY people are completely ignoring the fact that the research has been clear on the environmental and exclusionary impacts of in-person conferences for YEARS.

The research is also clear that the ONLY benefit in-person conferences hold over virtual is networking. And networking occurs primarily via perceived worth and value, determinations people tend to make (consciously or not) based on appearance and dress, meaning disabled people, people with visual or neurological differences, people with less money, queer people, etc. are often devalued and ignored,

Networking also doesn’t serve to improve a field. If anything, it further creates silos of people who are similar to one another finding and supporting one another and effectively making an echo chamber where diversified and novel ideas are less likely. Which is unfortunate because research is also clear that increasing the accessibility of conferences and improving the diversity of a field by extension and including the most vulnerable and patient groups in the entirety of the research process are demonstrated to be beneficial to science and scientific development. To improve the quality and utility of research produced on medical conditions. And these “scientists” chose to ignore that science so that they could get away from their families and take a little vacation and schmooze one another? True leaders in the field! 🫠

And here’s some sources in case you don’t believe me:

“Many researchers are unable to attend in-person conferences due to financial and logistic barriers (Sarabipour et al., 2020; Figure 1). Virtual conferences lower or remove these barriers by reducing both costs and travel times: they also reduce the 'red tape' (e.g. the need for visas) experienced by some researchers, and make it easier for those with disabilities or vulnerabilities and those with caring responsibilities to take part. Another advantage is that they have a much reduced carbon footprint (Sarabipour et al., 2020). Virtual conferences are also significantly cheaper for scientific societies to organize (Castelvecchi, 2020), allowing lower registration costs than in-person meetings. This enables a more efficient use of funding, since attending in-person conferences costs researchers an aggregate of tens of billions of dollars annually (Sarabipour et al., 2020; Row, 2019).”
elifesciences.org/articles/62668

“Transitioning from in-person to virtual conferencing can substantially reduce the carbon footprint by 94% and energy use by 90%.”
nature.com/articles/s4146…

“Many academic and tech conferences have been spaces that reproduce systemic inequalities, by failing to overcome the barriers for participation.”
pmc.ncbi.nlm.nih.gov/articles/PMC93…

“The positive impacts [of patient and public participation in research] identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results.”
pmc.ncbi.nlm.nih.gov/articles/PMC50…

“Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes.”
pmc.ncbi.nlm.nih.gov/articles/PMC39…

“Underrepresented groups produce higher rates of scientific novelty. However, their novel contributions are devalued and discounted.”
pnas.org/doi/10.1073/pn…