organize-ability

Tips, ideas, and reflections on political and issue organizing, written by organizers with disabilities and people working for disability justice.

[organize-ability]

GOTV Can Kill You: Confessions of a Disabled Organizer

[image: an Ohio Permanently Disabled placard, expired Feb 2016, sitting atop a plant in a windowsill with a yellow building across from the window]

They asked me to leave and seek medical help, so I did.

I was taking the lead on working the predictive dialer at the organization where I had a temporary campaign job for the first time in 3 months. The decision was simple: Work and pay rent/afford meds/eat, or don't work, don't eat, don't take your meds.

In hindsight the person who identified I was too sick to be working (and actually a massive liability) likely saved my life. (I'm forever grateful Karen <3)

I moved to Ohio from the SF Bay area in June of 2010 and immediately got a field job with the Ohio Coordinated Campaign. My turf was in CD 1, specifically Steve Driehaus' district. My campaign job was pretty standard. 7 day a week schedule, 9 AM - 9 PM minimum. I have Ankylosing Spondylitis‎ (AS), which, if you are wondering, is an auto immune condition that hurts A LOT. EVERYWHERE.

I began doing professional organizing in January of 2003 in Philly, having been diagnosed with AS 3 years prior. It wasn't until the end of 2004 and 15,000-ish door knocks later that it came back to bite me in the ass. Or rather, bit me in the back, knees, and hips.

I remember it like yesterday. I had just gotten back from Field Directing a GOTV office in Broward County, FL with Working America and was canvassing somewhere in Montgomery Co., PA when my left knee gave out.

I hit the pavement. Ouch. And then I went ouch for a few more months until I finally accepted that my condition had won that round, and taken me out of the field. I continued working in the same field office as an office manager.

So in Columbus, Ohio that day, making calls to defeat Issue 2/S.B. 5, Karen saw my situation in a way that I was not able to. She gently asked me to leave and seek medical attention because my arm had become inflamed to the point where it was 2X its normal size, complete with black, blue, and yellow shading. The inflammation had begun in my elbow that time, and I had put my arm in the cheapest sling I could find. My arm was in backwards because my elbow was too swollen and crazy painful to be able to fit 'right-ways'.

I was able to see a doctor later that day for free, thank god. The Doc let me know that I was a few hours from septic shock and blood poisoning/infection. If I hadn't come in to see her that day I could have suffered the ultimate consequence; Death. Not cool at all.

I was in that position because:

The ACA hadn't kicked in yet and I LITERALLY could not get health insurance privately;

I didn't qualify for unemployment insurance in OH after I lost my campaign job;

I committed my whole mind and body for 6 months to a schedule no person should have to work let alone someone who is disabled with a chronic condition;

Election and Advocacy work (most, not all), intentionally or not, is built to exclude POC, PWD's, low income folks, and many others.

Fuck that, amirite?

I'm here to say three things.

The MF progressive movement needs to lead on building an active space for PWD & PWCC (people with chronic conditions). We have a lot of Organizing to do to raise the votes and voices of disabled and chronic condition folks in the USA, but first, our team needs to be the SAME TEAM as yours. And it really isn't right now.

People that GOTV or do movement work and are PWD/PWCC are amazing beacons of strength in our movement. It's time they got the respect and acknowledgement they deserve.

Voting for Hillary is voting to preserve, improve, and keep fighting for better healthcare in America. Anything less and you are flirting with (quite literally) shortening the length of my life.

So to all my PDW & PWCC's out there, I love you and respect your work and cant wait to start organizing tomorrow.

Yours in #ChronicSolidarity,

Scott Seeborg

Disabled Organizer

@scottseeborg

[organize-ability]

tfw your body parts swell for no reason. #SpoonieProblems #chroniclife

[marauders4evr]

“The only disability in life is a bad attitude!”

Are you sure?

Like are you REALLY sure?

[bellthekat]

This person was really dedicated to making that point.

[marauders4evr]

You don’t know the half of it.

This was the third take.

The other two…..did not………….end………………………..well.

[billierain]

an idea for activists

seek out people who are disabled and ask us what we think needs to happen. bring us home cooked food and interview us about our lives and our visions for activism. visit folks in institutions and ask about solutions.

seek out folks who are isolated and come to us. we are right here. in our houses, institutions, and on the street. why keep expecting us to come to you? why expect us to travel and visit the enabled world when we all know it is designed to keep us out?

what do you think might change about your activism if you made a point to support and listen to the most isolated?

[autisticarchive-deactivated2019]

You’re no ally to the disabled community if you are more concerned with the few people who fake a disability than with the millions of actually disabled people who don’t receive the support, accommodations and validation they need.

[tricks-for-blog]

Are you epileptic and can't have gifs on your dash?

There’s are several ways to turn off all gifs on your dashboard.

If you have XKit, you can download the “Disable Gifs” extension.

If you want to (permanently) disable any gifs on the web, follow this handy guide (works for Firefox, Internet Explorer and Opera).

There is a Chrome extension that pauses all gifs until you click to start them.

Know more / other ways? Please share!

[spoonies4ever]

When they say I should try harder...

[mcdyke-deactivated20171112]

being a female means needing to see 10 different doctors to get a proper diagnosis because they always think you’re exaggerating and/or lying

[leftiesneedrights]

define proper diagnosis. I mean, does that just mean the diagnosis you want?

[mcdyke-deactivated20171112]

no :) it means going to 10 different doctors who disbelieved your symptoms until the 11th found cysts on your ovaries :) which may mean infertility :) sit on a cactus :)

[cobra-23-deactivated20151224]

I call bullshit

[40yodater]

Of course you do. Like the first 10 doctors. 😒

[cobra-23-deactivated20151224]

I call bullshit on the story. If you think you have an issue you should see a specialist not just your PCP.

[40yodater]

Like the 4 “specialists” I saw for the crippling numbness in my face and legs I had for over a year while they told me it was “stress”? When it was finally found that I had scars on my brain and spine? Those “specialists” we’re male neurologist who wouldn’t give me an MRI because “women stress too much”. Go fuck yourself.

[beesplosion]

MY SPINE WAS BROKEN FOR 2 YEARS BECAUSE MY DOCTORS TOLD ME I JUST HAD BAD CRAMPS AND REFUSED TO TAKE XRAYS. FUCK YOU AND YOUR ENTIRE LIFE. WHEN WILL BOYS REALIZE THEIR EXPERIENCES ARENT STANDARD???? I ALSO LOVE THIS IDEA THAT YOU CAN JUST GO TO A SPECIALIST WHENEVER YOU WANT LOL IF OUR PCP DOESNT BELIEVE US WHEN WE TELL THEM OUR SYMPTOMS THEY ARENT GONNA REFER US TO A SPECIALIST YOU FUCKING MOLDY WALNUT

[proudly-pro-choice]

My parents began noticing something large in my throat, saw a specialist….Guess what? Told me to lose some weight..even though I wasn’t overweight. I would have my period for weeks at a time. Was told that it was teenage hormones and stress.

Two fucking years later I attempted suicide they ran a battery of tests as required and bam! They find out that I have untreated Hashimoto’s. The “thing” was a goiter. Possible symptoms of an untreated thyroid disease is the goiter, unexplained weight gain, and depression. All they had to do was test my blood, but they said young people don’t have thyroid problems. 😒

-Allie

[tikkunolamorgtfo]

Ten years ago, my mother—who is a pretty tough cookie—started feeling both ridiculously wired, anxious, and incredibly emotional. Every doctor she saw told her she was going through early menopause, even though she was still menstruating. Her health declined to point where she was barely sleeping, losing weight, and crying constantly, which was a huge red flag because my mother never cries. Finally, she went to see another doctor 2.5 hours away who referred her to an endocrinologist. And what did the endocrinologist say? He diagnosed her with one of the most advanced cases of Grave’s Disease he had even seen, and said if she had gone just a few more months without being treated, she could have FUCKING DIED. 

Also, it turned out that her thyroid levels had been moving out of the normal range in a progressive pattern for years, but nobody bothered to look at her past test results until after the diagnosis. They would just do a test, see that it was “in the normal range” and leave it at that. She could have caught it before she even had symptoms, instead of basically being accused of having hysteria. 

[celestial-cat-prince-deactivate]

i had a brain aneurysm/hemorrhage ten years ago, doctors still tell me im faking my disability BECAUSE YOU CAN TOTALLY FAKE LIMITED MOVEMENT OF THE LEFT SIDE

[symphonicsadness]

My sister had intercranial hypertension which was causing headaches, dizzy spells and loss of vision, and you know what the hospital told her? She was being a hysterical girl and making it up. A few weeks later she spent roughly a month in hospital and had several lumbar punctures to relieve her RECORD HIGH spinal pressure that was causing so much strain on her brain and optic nerves she was being sent blind.

[fail-sage]

Everytime I see this post (and it’s been a good 5/6 times), it has different stories and experiences of women who have been horribly mistreated by doctors and it just blows my mind that this is so big. It’s absolutely disgusting how terribly women are treated in the medical world and something needs to be done about that.

[kirawords]

my friend lea had back pain, then pain in her legs and feet, and then numbness. despite seeing 7 different doctors over 2 years, by the time they found the cancer it was inoperable. chemo and radiation didn’t work. the cancer spread. she died and left behind a 5 year old daughter.

[kaijuno]

A few years ago I would go through spells where I literally could not stand on my own and I couldn’t get out of bed. I would be freezing and too weak to eat. I would keep having heart palpitations as well. I got up the money to go to a clinic and they told me it was just stress and to basically just work on chilling out. I saved up money for a few weeks to do this and I pretty much get a “chill out” from them. As time went on it got worse, most noticeably the heart palpitations were happening almost constantly. I went again to a different clinic and was told it was normal and that it was probably stress. They did no tests, and they told me it would “just go away”. Two weeks later I ended up collapsing going down some stairs, and at the hospital it was discovered that I had such severe anemia that my heart could barely keep up with trying to get enough oxygen to my body. I had developed left ventricular hypertrophy (my heart muscle is too big) and because of them ignoring me and dismissing me I’m at a much higher risk of heart attacks and stroke now.

[spacebabenumber-25]

I went to the doctor with severe intermittent pain in my upper right stomach area that was so bad I had to miss school. Despite the fact that my period has been on a regular 3 month cycle for years, and I still had two months left until my period, my doctor told me it was period related cramps and or indigestion. 2 months later I’m in the hospital getting my gallbladder removed. It was so obstructed that there was gangrene developing my my system.

[words-writ-in-starlight]

So…everyone who’s given me shit for that one post (about medicine and equal treatment and shit) can just read this because I’m sick of defending my case.

[hypergoomba-deactivated20171103]

i know this post is already long but here’s a pretty good article about how gender bias in medicine is quite literally killing women. it focuses a lot on heart attacks but it applies to all areas of medicine

[organize-ability]

by Sarah of organize-ability

[IMG: 2 pie charts. The first is labeled “What I think about.” The largest piece is labeled “pain” and the two smallest are labeled “other stuff” and “dogs.” The second pie chart is labeled “What I talk about,” and its biggest piece is “other stuff.” The smaller piece is “dogs” and the smallest is “pain.”]

[takeawaythepain-spoonie]

Am I right?

[organize-ability]

[IMG with handwritten text that reads "Some days, I consume more pills than food." There is an arrow with text that reads, "most expensive breakfast ever," and points to a badly drawn bowl of pills in various shapes and colors. @elizabethadrina Twitter handle in the corner.]

[i-want-my-iwtv]

what a year, everything was terrible and i was tired [X]

[disabilityhealth]

When someone tells me I should be doing more

[Gif of Mary from Downton Abbey rolling her eyes and looking to the side.]

[nojodes-deactivated20180530]

when filling out forms for equipment, financial aid etc for disability, mental illness etc

ALWAYS write abt what it’s like on your worst day. it doesnt matter how many bad days you have, or how fake it feels wording it all so strongly.

get what yr entitled to

[deactivated-blog]

along the same lines as that last reblog:

I wish people understood that I WANT to get out of bed. I WANT to take a shower. I WANT to clean the house. I WANT to make and eat actual meals.

But sometimes I just CAN’T.

All the encouragement, negotiating, bullying, or nagging in the world (internal or external) will not flip the switch in my brain to “action”.

I’m not lazy. I’m not dirty. I’m disabled.

[exotic-neurotic-blog]

this is a graphic about what to expect if you’re sent to the ER by a therapist/psychiatrist/family member/etc trying to institutionalize you. 

bare in mind this is just based on my experiences as an 18+ year old in the US, and compares notes with friends. it’s not applicable for adolescent ward or folks outside the US.

other factors that increase your likelihood (across the board) of being sent to the psych ward:

being trans: it will probably increase the likelihood that you’ll be institutionalized, but to what degree varies hugely based on location, hospital, and even doctor. 

having a history/dx: if you’ve been institutionalized before it’s much easier for them to do it again. also if you have a *bad* dx.

unsupportive family: if you fam wants you to institutionalized, the doctor is more likely to agree with them. 

living alone: doctors get nervous if there’s no one to keep an eye on your/take care of you. 

race: if you’re a person of color, especially for black folks, you’re more like to be medically labeled as psychotic/severely mentally ill (there’s actually stats to back this one up), and thus so more likely to be institutionalized. 

anyway feel free to add! i’m sure folks have experiences that don’t aline with this!

[chronic-illness-resources]

I’ve been looking for a resource like this, this is good

[nishicake]