As Seen On Twitter | So I’m reading this paper and…. Fucking. Yikes. Wild idea: #NothingAboutUsWithoutUs should include disabled folks who don’t ID … via @alexhaagaard

Alex Haagaard‏ @alexhaagaardFollowingFollowing @alexhaagaardMore

So I’m reading this paper and…. Fucking. Yikes. Wild idea: #NothingAboutUsWithoutUs should include disabled folks who don’t ID as chronically ill / chronically pained speaking over those who are. [Transcript to follow in replies]

Transcript to follow in replies

9:21 AM – 5 Jan 2019   

Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

Transcript: “In this paper we hope to extend this debate. It seems to us to be limited in two major respects. First, it is notable that ‘pain and chronic illness’ are the recurring examples of impairments not addressed by the social model…

 

Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

…This has distorted the debate. Pain and chronic illness are neither impairments nor restricted to the experiences of disabled people. Non-disabled people experience both pain and chronic illness…


Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

….Indeed, in the pursuit of physical fitness, pain can be actively pursued by non-disabled people: ‘no gain without pain’. Secondly, within this debate, impairment is regularly equated with personal tragedy…


Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

…It is our contention that an affirmative model is developing out of individual and collective experiences of disabled people which directly confronts the personal tragedy model not only of disability but also of impairment.” /End of transcript


autistictic‏ @autistictic 10h10 hours agoMoreReplying to @alexhaagaard

I am disabled. My chronic pain & illness are two of my disabilities. I used to be able to do things that my chronic illness & pain now disable me from doing. My chronic pain & illness are also part of why I got a disabled ID and a permanent ‚unable to work‘ note. So…yeah…


Annie Segarra‏Verified account @annieelainey 8h8 hours agoMoreReplying to @alexhaagaard

Lol this makes me wanna fight.


Alex Haagaard‏ @alexhaagaard 8h8 hours agoMore

😂

Seriously, I wasn’t expecting my heart rate to go up this much reading academic papers


Tami Love‏ @ChronicTami 7h7 hours agoMoreReplying to @alexhaagaard

That paper’s intro is a long way to say “fuck y’all”. W.O.W.0


Four Wheel Workout ™️  ♿️‏ @4WheelWorkOut 9h9 hours agoMoreReplying to @alexhaagaard

where can i find this paper. I interested to see if they discuss the medical model at all.

Alex Haagaard‏ @alexhaagaard 9h9 hours agoMore

It’s not open access but I can DM you a pdf if you need?https://twitter.com/i/cards/tfw/v1/1081633994125516800?cardname=summary_large_image&autoplay_disabled=true&forward=true&earned=true&edge=true&lang=en&card_height=344&night_mode=true&scribe_context=%7B%22client%22%3A%22web%22%2C%22page%22%3A%22home%22%2C%22section%22%3A%22permalink_overlay%22%2C%22component%22%3A%22tweet%22%7D&bearer_token=AAAAAAAAAAAAAAAAAAAAAPYXBAAAAAAACLXUNDekMxqa8h%252F40K4moUkGsoc%253DTYfbDKbT3jJPCEVnMYqilB28NHfOPqkca3qaAxGfsyKCs0wRbw#xdm_e=https%3A%2F%2Ftwitter.com&xdm_c=default9619&xdm_p=1


Four Wheel Workout ™️  ♿️‏ @4WheelWorkOut 9h9 hours agoMore

Alex Haagaard‏ @alexhaagaard 9h9 hours agoMore

Argh, for some reason it’s not letting me create a new message in my DMs?? I’ll give it a try again in a little while.


Morgan Fyfe-Williams‏ @jaditelefae 9h9 hours agoMoreReplying to @alexhaagaard

The Job Centre people also believe pain is not an impairment.

Autistic Made Art‏ @AutisticMadeArt 8h8 hours agoMore

“Can you do X?” “Yes, but it’ll hurt like heck tomorrow.” “You’re fit for work.” “Can you do Y?” “Yes, but not 5 days a week until I’m 65” “You’re fit for work.” “Can you do Z?” “No.” *writes down Yes* “You’re fit for work”2 replies6 retweets25 likesReply


Matthew Cortland, esq.‏ @mattbc 10h10 hours agoMoreReplying to @alexhaagaard


Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

[Jim from The Office peering at his computer and then shaking his head in confused dismay]


Robin  🎨  ♿️‏ @foxgloveandfern 10h10 hours agoMoreReplying to @alexhaagaard

…. Not impairment? Spoken like someone who has never experienced disabling levels of pain or illness, of course.2 replies0 retweets73 likesReply


Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

🙄

Like…to compare acute post-exertional pain experienced by abled folks is not only absurd it is exactly what caused me to not realize I was literally having allergic reactions and dislocating my joints after excercising for years. Because everyone feels like that, apparently


Lyndsie Worley‏ @sleepspoonie 10h10 hours agoMore

I have idiopathic hypersomnia… I’m sleepy most of the time, and I have to sleep more much than non-chronically ill folks do. In high school and especially college everyone joked about how they were exhausted all the time and living off of coffee. I had no idea I was different.


Lyndsie Worley‏ @sleepspoonie 10h10 hours agoMore

So when I’d get so sleepy I had to call out of work, miss school, or flake on a social event, I’d get told “everyone else is tired all the time and they make it work,” and “you’re not pushing yourself like everyone is so you’re being lazy.


Lyndsie Worley‏ @sleepspoonie 10h10 hours agoMore

Nevermind that by that point I was sleeping up to 16 hours at a time, which I don’t believe is biologically possible for actual non-sick people to do. It took things getting worse (sleeping 30-40+ hours at one time and hallucinating) for everyone to realize something was wrong.5 replies0 retweets27 likesReply


Alex Haagaard‏ @alexhaagaard 10h10 hours agoMore

SAME HERE. That was honestly the most inherently awful aspect of any of my disabilities I’v ever experienced. Being quite literally trapped inside your own brain because it won’t allow you to wake up is some serious body horror shit.


Dembai‏ @LadyDembai 8h8 hours agoMore

Oh it is. An hallucinating when you wake because you’re still convinced that dream reality is real. My current meds somewhat supress my dreams, but I still wake and can’t move at times because the sleep is too much to resist.1 reply0 retweets1 likeReply


Lyndsie Worley‏ @sleepspoonie 8h8 hours agoMore

For 2 years I had no idea I was hallucinating. I legit thought I was being haunted by a demon-shadow creature that would paralyze me for 30-60 minutes. I no longer see that thing, but I have a bunch of new horrific stuff that’s suddenly popped up this past year, so that’s fun :/2 replies0 retweets2 likesReply


Sara Luterman‏ @slooterman 8h8 hours agoMoreReplying to @alexhaagaard

What is this and where is it from?


Alex Haagaard‏ @alexhaagaard 8h8 hours agoMore

I think the most frustrating part of it for me is that there’s a germ of a good idea in this paper – that disability isn’t inherently tragic and that lived experience of disability can be positive – but the arguments they’re using are something else.https://twitter.com/i/cards/tfw/v1/1081647338131808258?cardname=summary_large_image&autoplay_disabled=true&forward=true&earned=true&edge=true&lang=en&card_height=344&night_mode=true&scribe_context=%7B%22client%22%3A%22web%22%2C%22page%22%3A%22home%22%2C%22section%22%3A%22permalink_overlay%22%2C%22component%22%3A%22tweet%22%7D&bearer_token=AAAAAAAAAAAAAAAAAAAAAPYXBAAAAAAACLXUNDekMxqa8h%252F40K4moUkGsoc%253DTYfbDKbT3jJPCEVnMYqilB28NHfOPqkca3qaAxGfsyKCs0wRbw#xdm_e=https%3A%2F%2Ftwitter.com&xdm_c=default9620&xdm_p=12 replies0 retweets14 likesReply

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liminal nest‏ @UntoNuggan 9h9 hours agoMoreReplying to @alexhaagaard

What did i just read1 reply0 retweets12 likesReply

Matt Hope  ♿‏ @HopingMatthew 9h9 hours agoMore

My brain hurts now.


Alex Haagaard‏ @alexhaagaard 9h9 hours agoMore

😉

As long as you remember that’s not an impairment


Matt Hope  ♿‏ @HopingMatthew 9h9 hours agoMore

I’ll try to keep that in mind. If I squint really hard and throw out most logic the quote makes some amount of sense.


Krampus Power MAKE-UP!‏ @pinkproletariat 9h9 hours agoMoreReplying to @alexhaagaard

Whoa, wtf. Check your privilege, ableds.


Alex Haagaard‏ @alexhaagaard 9h9 hours agoMore

The best part is it’s in a disability studies journal! Presumably written by disabled people! I just….*existential screaming*1 reply0 retweets12 likesReply


Krampus Power MAKE-UP!‏ @pinkproletariat 9h9 hours agoMore

Holy crow!!!


Julie Atwood‏ @jmatwood 10h10 hours agoMoreReplying to @alexhaagaard

🙄

Uhhmmm I get why they want to ensure not ALL disability includes the “personal tragedy” narrative, but erasing it completely erases people like me and other once-abled folks, and reinforces the idea that disability is a fixed, permanent binary; abled people are abled forever. 2 replies2 retweets41 likesReply

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Julie Atwood‏ @jmatwood 10h10 hours agoMore

🤷

It would be nice if people were more open to the idea of potentially transient ability and less “omg if I were disabled I’d kill myself”. Being born D/deaf isn’t a tragedy, but my disability origin story is. 0 replies1 retweet27 likesReplyRetweet

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Thorn  ♿️ 🌈 🦄‏ @unicornthorn 4h4 hours agoMoreReplying to @alexhaagaard

It’s literally rhetoric like this that made me think I was just “lazy” & “weak” and that’s why I couldn’t handle the pain & fatigue that “everyone” supposedly had. Only to turn out it wasn’t normal and I just got sicker and sicker before realizing something was actually wrong.1 reply0 retweets13 likesReply

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Thorn  ♿️ 🌈 🦄‏ @unicornthorn 4h4 hours agoMore

🙄

It actually baffles me how often I see other disabled folks argue that chronic illness isn’t a disability. Like sure, I’m just 95% house/bedbound, too physically weak & shaky & in way too much pain to do basic daily activities. But chronic illness isn’t disabling or anything! 2 replies4 retweets21 likesReply

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Fay Onyx‏ @writing_alchemy 4h4 hours agoMore

Unless it is a personal identification from someone with a chronic illness, saying that chronic illness isn’t a disability is ridiculous. The whole idea of disability is that it is an umbrella term that covers anything that has a long-term impact on day-to-day functioning.0 replies0 retweets2 likesReplyRetweet 

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Sarah Blahovec‏ @Sblahov 4h4 hours agoMoreReplying to @alexhaagaard

I literally can’t work in an office due to chronic pain and illness issues and yet that isn’t “an impairment.” Really wild how they’re intentionally excluding pain from being an “impairment that impacts at least one major life activity.”0 replies0 retweets8 likesReplyRetweet 

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Mennonite Mom‏ @mommy97giraffe 9h9 hours agoMoreReplying to @alexhaagaard

I have six autoimmune diseases. and fibromyalgia. 24/7 pain and extreme fatigue, not to mention a host of symptoms and complications. But it’s not impairing my ability work??? BS. Who do these people think they are????0 replies0 retweets14 likesReplyRetweet 

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Union Salt Bae‏ @RaeJudyC 2h2 hours agoMoreReplying to @alexhaagaard

Ah yes, the lactic acid burn I feel after a hard workout is exactly the same thing as the upper back muscle spasms that occasionally make it impossible for me to sit or stand upright. So angry right now.0 replies0 retweets3 likesReplyRetweet 

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Reese Tyrell‏ @ReeseSTyrell 8h8 hours agoMoreReplying to @alexhaagaard

Try having severe bladder pain 24/7 without experiencing disability, J. Swain and S. French.0 replies0 retweets3 likesReplyRetweet 

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 ♿️ Apparently no one worth mentioning‏ @mssinenomine 8h8 hours agoMoreReplying to @alexhaagaard

Link to paper possible?0 replies0 retweets2 likesReplyRetweet 

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Laura Elliott‏ @TinyWriterLaura 9h9 hours agoMoreReplying to @alexhaagaard

😐

Holy shit 0 replies0 retweets3 likesReplyRetweet 

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Kimbrah  ♿‏ @RainbowYeticorn 10h10 hours agoMoreReplying to @alexhaagaard

Ugh! This is making my brain explode.0 replies0 retweets3 likesReplyRetweet 

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Fay Onyx‏ @writing_alchemy 4h4 hours agoMoreReplying to @alexhaagaard

How someone could compare the temporary pain of exercising (which comes with endorphins) to chronic pain is beyond me. Yuck! Also, saying the social model of disability doesn’t effect chronic pain, when access to pain meds is a huge socially created issue, is ridiculous.1 reply0 retweets1 likeReply

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MyHealthECarly‏ @CarlyRM 2h2 hours agoMore

It’s like saying wearing ear plugs is the same experience as being hearing impaired0 replies0 retweets2 likesReplyRetweet 

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Monique‏ @EasilyEmma 2h2 hours agoMoreReplying to @alexhaagaard

I’m stuck on: “Non disabled people experience both pain & chronic illness” Maybe it’s brain fog but I’m lost on the logic of their use of CI. Chronic illness is just that—chronic/long lasting/often incurable. Nondisabld peeps aren’t chronically ill, & if they are, they’re disabld0 replies0 retweets1 likeReplyRetweet 

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Emily‏ @youdontgettorun 4h4 hours agoMoreReplying to @alexhaagaard

I don’t know who to yell at, but I’m certainly furious…0 replies0 retweets1 likeReplyRetweet 

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Leah‏ @Pandorlla 4h4 hours agoMoreReplying to @alexhaagaard

I developed a chronic pain/illness disorder as a result of the constant stress my disability put me under. I consider them both equally debilitating. Trying to seperate us and start fights won’t work. You can’t tell those who experience both we don’t know what we’re talking about0 replies0 retweets1 likeReplyRetweet 

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Kathy Flaherty‏ @ConnConnection 8h8 hours agoMoreReplying to @alexhaagaard@annieelainey

[GIF: man shaking his head and blinking slowly] 0 replies0 retweets2 likesReplyRetweet 

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Fiona Robertson‏ @FionaSnp 5h5 hours agoMoreReplying to @alexhaagaard

I was in my late 20s before I realised it wasn’t normal to wake up and feel like you can’t get out of bed, because so much of society referred to mornings being sucky. So it never occurred to me to tell a doctor, because it was normal to feel exhausted when I woke up.1 reply0 retweets2 likesReply

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Fiona Robertson‏ @FionaSnp 5h5 hours agoMore

I heard some people discussing depression on the radio and they were horrified that some people had to fight with themselves to get out of bed and don’t wake up feeling refreshed. I turned and asked the person who was driving if that wasn’t a normal thing.1 reply0 retweets0 likesReply

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Fiona Robertson‏ @FionaSnp 5h5 hours agoMore

Like, I know not everyone’s a morning person and most people like their comfy beds, but I had a war with myself every day and have never once in my entire life woken up and thought ‘ah yes, I’ve slept enough, I feel better now’.0 replies0 retweets0 likesReplyRetweet 

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sherry kennedy hickman‏ @sherry5997 7h7 hours agoMoreReplying to @alexhaagaard

wow.

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