Spoonies in Medicine

Spoonies in Medicine is an initiative started by an optometry student in Boston, MA to improve spoonie access to medical professions, including reducing stigma.

[briannyssey]

update on some of what’s been happening in Kansas wrt the state id law

She’d Never Changed Her Gender Marker. Kansas Invalidated Her License Anyway. — Assigned

A trans Kansas resident recently changed her name but not her gender marker on her license, fearing what Kansas may do if she did. The Kansa

Folks who’ve simply gotten their names changed in the system were getting flagged to have their IDs invalidated

They are tracking trans residents of Kansas. They have already established that they can and will forcibly undocument trans kansans.

This past legislative session it’s “only” been reversion of legal ID and banning of gender affirming care for minors. What will it be next legislative session?

[spooniesinmedicine]

I am so sorry to all of you, but SiM has been put on hold indefinitely. 

I’m having to fight a battle over religious observance now instead of ableism due to the fact that I am personally facing consequences of that observance.  I still plan on giving the letter in regards to A$ and ABA to the professor to whom it is directed, but that also is on hold because I do not have the emotional energy spoons to do both things at once. I am so, so sorry. I feel like I have failed. I leave Boston and thus leave my greatest opportunity to advance SiM in 11 days. Had I started earlier in my academic career, I could have done more. If I was more prepared for such resistance from a “we are Family! and we support everybody!” school (and let’s be honest, I should have been), then maybe I could have done more. So many ways I could have done more.  To all my fellow Spoonies: don’t give up. If you can muster the energy, fight back. And if you think you are able, please, join a medical profession. We need more Spoonies, more people who understand what it’s like to be a patient, in medicine. Desperately. I tried, but I couldn’t do it alone. If you want to fight back, just reach out and I will help you and support you in whatever ways I can. You deserve to see yourself represented in the people you turn to for medical help. You deserve to be treated equally and with respect, not just in hospitals and doctors offices but everywhere. 

Again, I’m sorry I couldn’t do more for our community. But I will still be here fighting how I can. And I hope you all continue to fight too.

[spooniesinmedicine]

I’m so so sorry, new mobile *said* I was queueing things to my main account but somehow they ended up here.

Again, my apologies! I’ll keep a closer watch to try to catch it the next time it happens!

[the-real-eye-to-see]

Because Sesame street is for the people!

[sizvideos]

Watch the video of this man giving away his software for free to help people with degenerative diseases communicate

[sam-keeper]

but…. but…. profit motive! infinite houses!! this doesnt fit in my narrow victorian framework for understanding human nature!!

[jambonsama]

@thebibliosphere @vaspider

[thebibliosphere]

Oh. Oh dang. I know several people who this could help.

[spooniesinmedicine]

Tackling Support for A$ and ABA in the medical community

A few weeks ago, a professor who works every day with disabled patients of all levels of functionality lectured on certain conditions and how to treat patients with disability. Other than the support of person first language, I was very very happy with his presentation. But then he started talking about autism. He was very supportive of Autism $peaks, drawing almost all of his information on autism from their website. He also directed 130 students to their website to learn about how to help those who are autistic, and has probably been doing so for years. Likewise, he spoke of ABA therapy as the “gold standard” for “treating” autism. 

I immediately knew that I could not let this slide. Now that my boards are over, I have written a letter to the professor about the problems with A$ and ABA therapy and provided him with numerous resources about both why these things are problematic and better organizations to look into, like ASAN. 

I currently have 3 volunteer autistic sensitivity readers and that is enough for me to feel comfortable sending the letter, but if any other autistic individuals are interested in looking it over, I would not say no. I am putting in a footnote with the number of volunteer autistic sensitivity readers that have read and approved the letter, so obviously more readers makes me look even more credible! 

In other news, I will begin collecting academic articles about the difficulties disability advocates face that other oppressed groups (like LGBT, Black Lives Matter, etc.) don’t have to deal with. Like... being physically able go to a protest.  And the fact that many individuals with disabilities were institutionalized and unable to advocate for themselves until decades after the Civil Rights Movement of the 60′s had come and gone. If anyone has any academic sources about this sort of thing, please please send them to me! edit: i want to stress that the reason i need these resources is because the faculty at my school believes that since women advocated for their right to vote, black Americans advocated for the end of segregation and myriad other rights denied (and still denied), and LGBT people advocated for marriage equality, that disabled people are at fault for not having made as much progress. I am fully aware that members of the LGBT community, black community, and many other oppressed groups face intersections of oppression that often include spoonie status. I also recognize that other groups (especially Black Lives Matter protests recently) face their own issues protesting and fighting for their rights. I do not want to discredit that at all. I am not trying to play oppression olympics, but trying to explain the difficulty inherent in putting the onus on disabled and chronically ill people to be able to advocate in the same ways as other groups.

[littlechronicillnessthings]

Chronic Illness Thing #68

When someone says they’re not mad you can’t work, but then constantly comment about how you don’t contribute financially. 

[spooniesinmedicine]

Hey all. It’s been over a month since my meeting and I just want to let you guys know where we’re at.

I have my licensing board exams so I can legally practice optometry on March 22. My boyfriend is visiting from overseas this week as well, which is putting even more of a crunch on my already very limited time. As I’ve said before, right now SiM is run by one person. So if I’m overwhelmed... SiM is overwhelmed. 

After boards I am going to compile a multitude of resources to combat the ableist positions I was faced with last month. I truly believe that until I get the administration to understand why their stance is part of the problem, I won’t be able to make changes. I thought that my first few documents were comprehensive, but apparently not.

I’m going to be turning to more academic resources, so if you know of any papers on ableism, the strengths and weaknesses of the ADA, amount and nature of ADA violations, etc. I would really appreciate having them passed along! As a student I have access to most journals through my school, so feel free to send things that require a subscription, etc. too!

[sailor-suit-star]

Accommodating someone’s disability isn’t special treatment

[chronicallypainful]

Accommodations don't remove my disability.

Accommodations don’t completely level the playing field between me and my peers.

Accommodations don’t change the fact this speaking math to a computer is at best half the speed of typing.

They don’t prevent my fatigue or help me stay awake in that early morning class (that wasn’t offered at any other time).

They don’t fix all of the inaccessible computer infrastructure or recoup the time that I spend emailing seven different departments about their inaccessible online trainings.

Accommodations can’t remove the stress of asking for extra help or give me extra hours in the day to study.

Accommodations don’t change the fact that, if my peers sleep eight hours a night while I need 10, my peers get an extra 14 hours per week to study or relax.

Accommodations don’t remove the fog that clouds my brain when sensory stimuli overwhelm me.

They can’t stop pain from breaking my focus on my academic work.

Accommodations are crucial, but they don’t remove the effects of my disability.

Accommodations give me a tiny foothold, a place to start, but I still have to climb a huge, icy mountain myself.

[spooniesinmedicine]

Update: Meeting on January 12, 2017

It did not go as expected. I am facing a large amount of ableism that I was not anticipating and am very frustrated with. 

The first ableist thought that is getting in my way is that the only way to overcome stigma is to have the stigmatized group “get over the stigma and do it anyway.” Very much that “pick yourself up by your bootstraps and just do it” mentality. Likewise, we were compared to black and LGBT civil rights groups... “they went out and advocated for themselves.” (I even said, verbatim, “what do you think I’m trying to do here!?” ridiculous.) I’m hoping to find a lot of sources showing why this is all harmful thinking.

The second ableist thought that I’m having to deal with is... I’m not even sure why what I’m asking for is an issue. But basically I said that I wanted a statement put on the website and/or in the student handbook that states that if you need help/accommodations, Student Services may be able to help you. Nothing absolute, just a statement telling students where to go if they’re struggling to find help. Because if you don’t know help exists/don’t know how to find it, how can you ask for help? But I keep being told “you should be able to ask for help,” as if we should magically know that help is available somewhere. We’re a small private school, we don’t have a disabilities office. I don’t know how to explain this better if she just refuses to get it. She thinks that because the ADA exists, we should all know and trust that everywhere follows it and has somewhere you can go to get your ADA compliant accommodations. I’ve already found some sources about violations of the ADA on large scale to show that the ADA does not ensure that we all have proper recourse and that we cannot automatically trust that every institution follows the rules. 

My goal is to compile the resources to combat these problems and also to sit down and create a structured plan for what I want to discuss at the next meeting, since I didn’t get answers about much else that I addressed in my school-specific document. 

I have a very disappointing feeling that I’m going to leave in May for rotations and SiM will fall to the wayside, no one will make sure my goals get implemented when I’m not physically here. I really wanted to make a difference. I don’t know if I will. I’m sorry. 

[spooniesinmedicine]

I am meeting with the Associate Dean of Students tomorrow to discuss her presentation to the administration!

I’m kind of freaking out. I’ve put a lot of time and energy into SiM; its success at my school could be the deciding factor of whether SiM becomes something more or if it dies here. 

I will update as soon as I can tomorrow!

[spooniesinmedicine]

Hello!

I hope everyone had a happy and (relatively) healthy holiday season!

I got some good news today! My sister’s boyfriend, who works in computer science and coding, has offered to take a look at the accessibility button issue! This is really exciting for SiM as I am still running this alone and have not had the time or spoons to devote to solving the problem I ran up against. With his help, our site will be even more accessible by providing increased contrast and glare reduction options.

Also, only another week until I learn about the Dean of Students’ meeting with the rest of the administration!

It really feels like SiM is moving forward!

[spooniesinmedicine]

Update: December 23, 2016

I received a return email yesterday from the Associate Dean of Students saying that she presented my documents to the administration and we will discuss that meeting when I am back in school (I am on break until Jan 9). 

There was no indication of how that meeting with the administration went, so I’m feeling a bit nervous. But this was the next step and now the ball is moving forward, so that’s kind of exciting!

As far as this site goes, I have been promising a more accessible format with accessibility buttons for a while now. I hope that you can all forgive me as I am, in fact, in graduate school to become a doctor, so I have been very busy. Also, the accessibility buttons have turned out to be much more complicated than I originally anticipated, as I think I’ve said before. But now that I’m on break, I’m hoping to make some headway in the next few weeks.

[lily-orchard]

Google Maps now notes if a location is wheelchair accessible

"Can I get in the building?" It might not be a question you find yourself asking regularly — but for the 3 million+ wheelchair users in the U.S., it's a..

Neat!

[tearsglitterflowers]

Teacher: you’re not sick Me: the school has my medical certificate Teacher: yes, but you’re not really sick Me: ???

[spooniesinmedicine]

Document 4 - School Evaluation

I have blanked out my school’s name and the company we are considering to have come in and do training because neither group has committed to being affiliated with SiM (yet). 

This is a 1 page evaluation of my school’s current accessibility and accommodation offerings. This is a follow-up to Document 2, which is a generalized “what SiM is and why you should join us” document.

For a Word (.docx) template of this document, please send an email to [email protected] and include the following information:

The document number (this is Document #4)