PhD. Clinician-Scientist. Gamer. Chicken-herder. CCI ADHD EDS TBI TN š³ļøāš
United States
Joined April 2021
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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?
Sometimes I feel like Iām crap at my job because of brain fog, memory issues, the fact that I canāt always have my camera on or often feel āoffā 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 itās just via better accommodation and pacing and acceptance.
They seek me out BECAUSE Iām disabled, and accept that Iām not perfect while I model being open about being disabled, being human, all while still fighting the urge to try to present as āperfectā and non-disabled myself at times. Itās actually really beautiful this tiny sliver of disability community and acceptance Iāve cultivated in the world, itās 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 didnāt yell louder (I was at the back) so they couldnāt lock them in the bus and call police.
THATās 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.
United employees forced a 25 year old woman to return to her seat next to a man who was masturbating because the flight was full. After landing, the airline told the woman it was her responsibility to contact police and gave her a $100 travel credit.
nbcnews.com/news/us-news/pasā¦
For the first time in my life I just had the thought āIām pretty damn impressiveā and whatās amazing about it is that Iām 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 āimpressiveā back then, working in fancy hospitals and coveted roles, even doing research for NASA or running studies at Northwestern. Iāve never once felt āimpressiveā before now at any point. And Iām 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 Iām 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. Itās absolutely beautiful and I am so honored to be a part of it. Only wish is that I got here sooner
āPatients with relevant scientific or medical knowledge were offered access at a substantially reduced rate, including access to almost 100 scientific sessions.ā
lol! This guy has the gall to say the conference was somehow accessible because disabled people he deemed worthy had āaccessā 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. Itās not
There are valid arguments here about accessibility, cost, carbon impact and the value of patient involvement in research. But those arguments shouldnāt be used to misrepresent what this particular conference actually offered.
It was not simply āphysically and financially inaccessibleā to patients unable to attend in person. Patients with relevant scientific or medical knowledge were offered access at a substantially reduced rate, including access to almost 100 scientific sessions. This has been explained several times.
Please email me your grievances and Iāll look into it. We do listen.
[email protected]
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 doesnāt 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 āscientistsā 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! š«
And hereās some sources in case you donāt believe me:
āMany 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).ā
elifesciences.org/articles/6ā¦
āTransitioning from in-person to virtual conferencing can substantially reduce the carbon footprint by 94% and energy use by 90%.ā
nature.com/articles/s41467-0ā¦
āMany academic and tech conferences have been spaces that reproduce systemic inequalities, by failing to overcome the barriers for participation.ā
pmc.ncbi.nlm.nih.gov/articleā¦
āThe 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 userāfocused research objectives, development of userārelevant research questions, development of userāfriendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumerāfocused interpretation of data and enhanced implementation and dissemination of study results.ā
pmc.ncbi.nlm.nih.gov/articleā¦
āPatient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes.ā
pmc.ncbi.nlm.nih.gov/articleā¦
āUnderrepresented groups produce higher rates of scientific novelty. However, their novel contributions are devalued and discounted.ā
pnas.org/doi/10.1073/pnas.19ā¦
This person called my saying a conference should be virtual and include BIPOC/global majority people, women, and disabled people ātokenismā and I think a number of you are following them.
Also, thereās AMPLE research supporting the fact that diversity in research and inclusion of patients and people with lived experience of conditions in the research development process for those conditions significantly improves the quality of research and speed of progress.
These supposed scientists are ignoring the very real science on how to conduct better science then waving their hands in their air as if thereās no possible solution to the fact that they havenāt made a lick of progress while studying LC and ME etc..
You conduct your research in a bubble and it will stay in that bubble. Clearly it isnāt working so why are you all just doing the same thing over and over?
Listen to patients. Many of us know far more than you. Include us. Accept our feedback. Make conferences accessible (fully virtual!). Present your research design to patient groups before going for the grant or starting up the study. Get feedback. Revise. Work with us. Do better and people might have a chance to get better.
And by listen to patients I also mean the ones who have been around and suffering for years and years. Not the loud ass tech bro who became disabled and now believes the specific thing they deal with is the worst possible condition in the world and that they are single handedly going to facilitate the development of a cure š«
Deer were eating our plants out front and while half awake to get them to leave I just yelled āif you donāt run away Iām going to shave your butts!ā
It worked. They ran away. Normally they just look at me and go back to eating so let it be known that deer donāt want shaved butts
Iām not following all of this conference stuff and donāt know what happened exactly but can someone please tell me why a conference about the consequences of an infectious disease (which I think this is, right??) needed to be in-person??
Itās like disability access, disability justice, disease transmission, and concern for environmental impact were all thrown out of the fucking the window. And for what? A bunch of self-congratulatory non-disabled white people to gather in a room and applaud one another without any patients around to hold them accountable?
Big olā yikes š¬
A personal note after the 2026 Amsterdam ISLC-PAIS Conference.
Since the conference, my inbox and DMs have been overflowing. The vast majority of messages have been incredibly supportive, for which I am very grateful. There have also been difficult questions and criticism, and occasionally some less pleasant messages.
I see a lot of anger now about a few comments made by researchers that can certainly be described as unfortunate. But I also want to put that in perspective. In the months leading up to the conference, we were confronted with an enormous amount of harsh language on X, emails and accusations, some of them simply untrue. I donāt say that to excuse anyoneās words or to start comparing who behaved worse. I say it because I think the last few days have demonstrated how quickly positions harden online, while an actual conversation can suddenly reveal that the intentions on both sides are very different from what we assumed.
X is particularly unforgiving in that respect. Complex issues become a few sentences, emotion takes over, and people read meanings into words that were never intended by the person writing them.
1/
Had to poop without a bidet today.
Hated it.
My butt was most definitely not truly clean after and it is such a waste of toilet paper.
Most people in the US are just galavanting about with a dirty butthole, arenāt they? š
Iāve been showing up to virtual medical appointments in a robe lately when Iām in a flare to save energy and just make sure Iām as comfortable as possible when already suffering, and I think it might be getting providers to take my pain more seriouslyā¦
As if theyāre like āoh shitā¦ you didnāt even put on clothes. You must actually feel like crap. Maybe we should help you!ā
If youād helped me more sooner I probably wouldnāt feel this crap, but thanks for finally catching on! š«
The irony of implementing pacing when you have an energy limiting condition is that developing a pacing system takes a lot of mental and emotional energy. Thereās executive functioning demand combined with grief and deep pain which all gets wrapped up in societal expectations, survival needs, and internalized ableism.
I support patients with figuring out how to better manage their care across so many different conditions and pacing, honestly, is possibly the hardest thing for people to target and stick to (myself included). Itās modifying your entire world and giving up so much of what you love to preserve your life and functioning. Non-disabled people vastly underestimate how difficult this is
Disabled Doctor retweeted
The way some of you talk about ppl on ozempic/glp-1s reminds me of how a lot of ācovid consciousā ppl talk about acquired brain damage
Donāt you dare point out that something a āliberalā says or does is ableist unless you want to be accused of ignoring the larger issue, being the reason republicans think we are too sensitive, or some other bullshit defensive response that communicates that they arenāt in community with disabled people nor do they actually care about us.
In reality, ableism is at the core of problematic isms like racism and sexism. Theyāve just convinced themselves that ableism is somehow acceptable
Physicians are often so uncomfortable with disability and ableist that they will lie to patients about prognosis rather than just tell the patient how it is and help them figure out how to live their life and accommodate themselves.
The result is patients end up struggling and blaming themselves for not getting or doing better which does immeasurable harm, but I guess itās worth it because the physician gets to avoid a 15 min convo where they have to face their own discomfort with disability š«