![Everything Everything: Being Sick = Not Living? [CC] @theannieelainey](https://i.ytimg.com/vi/LTrx3aGnDV0/maxresdefault.jpg)
Annie Elainey | Everything Everything: Being Sick = "Not Living"? [CC] @theannieelainey | Uploaded April 2017 | Updated October 2024, 8 hours ago.
The #EverythingEverything (SPOILERS: discussion of book ending) movie trailer has been released so I wanted to share my thoughts on the harmful tropes this film perpetuates.
This film so far participates in the false disability/illness trope as well as the “disabled lives are not worth living”, internalized ableism trope.
I have Ehlers-Danlos Syndrome; my symptoms cause me to spend a lot of time ill and in terrible pain/weakness in bed and at home, my symptoms do not allow me to stand/walk beyond a few seconds to a couple of minutes maximum. I have a community of people (many of whom identify as #Spoonies) with similar circumstances and though it can definitely be tough, we are still "living".
This is one of those "it takes courage to stand up to your friends" moments. As a fan of Amandla Stenberg, I want it to be clear that I dislike and am criticizing the trope and the harm it can do, while still respecting them and their work.
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If you enjoy my videos, please consider supporting this channel!
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer Latinx disabled (w/ Ehlers-Danlos Syndrome) woman and uses she and they pronouns.
The #EverythingEverything (SPOILERS: discussion of book ending) movie trailer has been released so I wanted to share my thoughts on the harmful tropes this film perpetuates.
This film so far participates in the false disability/illness trope as well as the “disabled lives are not worth living”, internalized ableism trope.
I have Ehlers-Danlos Syndrome; my symptoms cause me to spend a lot of time ill and in terrible pain/weakness in bed and at home, my symptoms do not allow me to stand/walk beyond a few seconds to a couple of minutes maximum. I have a community of people (many of whom identify as #Spoonies) with similar circumstances and though it can definitely be tough, we are still "living".
This is one of those "it takes courage to stand up to your friends" moments. As a fan of Amandla Stenberg, I want it to be clear that I dislike and am criticizing the trope and the harm it can do, while still respecting them and their work.
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: patreon.com/annieelainey
PayPal: paypal.me/annieelainey
Amazon Wish List: http://a.co/gyCgqsf
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click "Subtitles/CC"
-Click "Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language
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IN THIS VIDEO
Mic used: amzn.to/2ahAuT5
Camera used: amzn.to/2a5jPCq
My Associate Store: astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer Latinx disabled (w/ Ehlers-Danlos Syndrome) woman and uses she and they pronouns.
![Everything Everything: Being Sick = Not Living? [CC]](https://i.ytimg.com/vi/LTrx3aGnDV0/hqdefault.jpg "Everything Everything: Being Sick = Not Living? [CC]
The #EverythingEverything (SPOILERS: discussion of book ending) movie trailer has been released so I wanted to share my thoughts on the harmful tropes this film perpetuates.
This film so far participates in the false disability/illness trope as well as the “disabled lives are not worth living”, internalized ableism trope.
I have Ehlers-Danlos Syndrome; my symptoms cause me to spend a lot of time ill and in terrible pain/weakness in bed and at home, my symptoms do not allow me to stand/walk beyond a few seconds to a couple of minutes maximum. I have a community of people (many of whom identify as #Spoonies) with similar circumstances and though it can definitely be tough, we are still living.
This is one of those it takes courage to stand up to your friends moments. As a fan of Amandla Stenberg, I want it to be clear that I dislike and am criticizing the trope and the harm it can do, while still respecting them and their work.
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: https://www.patreon.com/annieelainey
PayPal: http://paypal.me/annieelainey
Amazon Wish List: http://a.co/gyCgqsf
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
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-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
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IN THIS VIDEO
Mic used: http://amzn.to/2ahAuT5
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My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer Latinx disabled (w/ Ehlers-Danlos Syndrome) woman and uses she and they pronouns.")
![MY DIAGNOSIS REVEAL! [CC]](https://i.ytimg.com/vi/LZeie3pMa3k/hqdefault.jpg "MY DIAGNOSIS REVEAL! [CC]
After about 2.5 years of hospitals, testing, and emotionally exhausting interactions with doctors, I finally got it; my diagnosis! In this video, Im gonna share with you how Im doing with the news, how I got here, the symptoms and what it all means, and what are my next steps. Please click to read some more information and personal updates below!
Something I forgot to mention and Im not sure if I made clear, my type of EDS is not fatal, as in its not actively killing me, I havent received an altered life expectancy. However, I do have to be aware of how EDS can affect my body and get tests from time to time to monitor my brain, heart, lungs, muscles, and other internal organs, because it has the potential to cause me complications in those areas, and THAT... well deal with it as it comes.
Again, with a diagnosis at least I know what to look out for!
I also MIGHT have some more DXs coming up. EDS was one of the chromosome variants but there are two more and the geneticist wants me to get more tests and see whats up with that.
If you would like to make a contribution to help with my medical expenses and in the efforts to move around independently again via powerchair, Ill leave some links below!
PAYPAL: http://paypal.me/annieelainey
PATREON: http://patreon.com/annieelainey (Support my work for as little as 1$/mo! 12$ a year to say that you enjoy my work and want to see more!)
GOFUNDME: http://bit.ly/1U62Kti (Id prefer another method because they take a percentage of your donation away, but if you must Im leaving the link anyway)
More Info on Ehlers Danlos:
http://ehlers-danlos.com/what-is-eds/
https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/
FOLLOW ME ON SOCIAL MEDIA
FACEBOOK: http://facebook.com/annesegarra
TWITTER: http://twitter.com/annieelainey
TUMBLR: http://annieelainey.tumblr.com
INSTAGRAM: http://instagram.com/annieelainey
SNAPCHAT: http://snapchat.com/annieelainey")
![Wynwood Walls and Movies in the Park | VLOGMAS DAY 9 [CC]](https://i.ytimg.com/vi/LdS6uX8UyQY/hqdefault.jpg "Wynwood Walls and Movies in the Park | VLOGMAS DAY 9 [CC]
Its been a surprisingly busy week and its really wearing me out but these are special occasions so Im making my best efforts. In this video Emi and I journey over to Wynwood to see some of the new art in the morning with less crowds, journey back home, and cut to the next night with movies in the park (which really ends up being an exhausted update from bed). As I type this description, my eyes are so heavy. Need more sleep!
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: https://www.patreon.com/annieelainey
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Periscope AnnieElainey
IN THIS VIDEO
Mic used: http://amzn.to/2ahAuT5
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My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![SHE (Dodie Clark Cover) [CC]](https://i.ytimg.com/vi/LpESwVvW8-U/hqdefault.jpg "SHE (Dodie Clark Cover) [CC]
She is an original song by fellow YouTuber Dodie Clark!
Find Original Song Here: https://www.youtube.com/watch?v=Vpg3gtwepSs
New Videos Monday-Friday #WithCaptions Subscribe!
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://facebook.com/annesegarra
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Periscope: AnnieElainey
ABOUT ME
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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-You can contribute Closed Captions in English or subtitles in ANY other language.")
![Happier in the middle | 2018 in Review [CC]](https://i.ytimg.com/vi/MT9Epu6x09w/hqdefault.jpg "Happier in the middle | 2018 in Review [CC]
I tried to do a better job of documenting the good days this year and I hope in 2019 Ill do even better. While my day to day is a lot of isolation, illness, and chronic pain, this past year I was able to travel more times than ever before in my life, thanks to work trips, and got to see my amazing friends and laugh and dance and have amazing conversations. I am so grateful for all the good moments I was able to experience! This was a very motivating year and I want more like it!
Song used is Happier/The Middle mashup by DJ Pyromania https://www.youtube.com/watch?v=JaPDh8Lu5oA
SUPPORT THIS CREATOR
Patreon: https://www.patreon.com/annieelainey
Wishlist: http://a.co/dbJlD3F
Merch: http://teepublic.com/user/annieelainey
One-time Donations
Paypal: https://www.paypal.me/annieelainey
Ko-fi: https://ko-fi.com/annieelainey
Venmo: https://venmo.com/annieelainey
Cash: https://cash.me/$annieelainey
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Twitter http://twitter.com/annieelainey
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YouNow: AnnieElainey
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
![Dislocations and Subluxations | A Very EDS Halloween [CC]](https://i.ytimg.com/vi/NCYggsx6i_M/hqdefault.jpg "Dislocations and Subluxations | A Very EDS Halloween [CC]
Previously: Hypermobility and Elasticity https://www.youtube.com/watch?v=fIonYUg6hiw
This is my first Halloween after officially being diagnosed with Ehlers-Danlos Syndrome (through chromosome examination, for those asking) last month and while thinking of Halloween costumes I definitely wanted to have an EDS theme. I decided to choose some characters inspired by my EDS symptoms in order to help illustrate what they are! Hope you enjoy!
Sources:
https://sportmedbc.com/article/dislocation-subluxation
My SO YOU HAVE EDS Essentials Store
(Braces, Pain Relief, Mobility, Accessibility, Hacks):
http://astore.amazon.com/souhaveds-20
New Videos Monday-Friday #WithCaptions Subscribe!
READ MORE BELOW!
***IN THIS VIDEO***
Mic used: http://amzn.to/2ahAuT5
Camera used: http://amzn.to/2a5jPCq
My Associate Store: http://astore.amazon.com/annielai-20
***SUPPORT THIS CREATOR***
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
PayPal: http://bit.ly/1D7QYW2
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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***FIND ME ON THE INTERNET AND LETS BE FRIENDS!***
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Periscope: AnnieElainey
***ABOUT ME***
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.")
![Rapping For The First TIme [CC]](https://i.ytimg.com/vi/NilUEvzB8LY/hqdefault.jpg "Rapping For The First TIme [CC]
Warning: do not expect this to be good and also... may contain some offensive language? Motivated by Hamiltons GRAMMY win this week, I am going to attempt rapping (in front of a camera/other people) for the first time! Is there anything youd like to try but feel like you might embarass yourself? Let me know in the comments! If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://facebook.com/annesegarra
Snapchat: annieelainey
PLEASE SUBSCRIBE AND CHECK OUT MORE VIDEOS
http://youtube.com/theannieelainey")
![Wheelchair Dating Questions [CC]](https://i.ytimg.com/vi/O-GROjEt-pI/hqdefault.jpg "Wheelchair Dating Questions [CC]
Happy Valentines Day! Here are my Wheelchair Dating questions based off the questions from BuzzFeed Videos Q and A!If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://facebook.com/annesegarra
Snapchat: annieelainey
PLEASE SUBSCRIBE AND CHECK OUT MORE VIDEOS
http://youtube.com/theannieelainey")
![Wheelchairs in the Aisle? | Vidcon 2016 PART 3 [CC]](https://i.ytimg.com/vi/O7ulgzanRmE/hqdefault.jpg "Wheelchairs in the Aisle? | Vidcon 2016 PART 3 [CC]
DAY 2 of VidCon, wheelchair troubles and no designated seating areas, YouTuber/Author thoughts, and my first In and Out burger!
New Videos Monday-Friday #WithCaptions Subscribe!
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
Medical Expenses, Pain Relief, and Mobility Devices: http://bit.ly/1U62Kti
PayPal: http://bit.ly/1D7QYW2
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://facebook.com/annesegarra
http://annieelainey.tumblr.com
http://instagram.com/annieelainey
http://twitter.com/annieelainey
http://snapchat.com/add/annieelainey
Periscope: AnnieElainey
ABOUT ME
Hello, hello! My name is Annie, my pronouns are she/her, and Im a QWoC, body positive, wheelchair user, disabled and chronically ill person (or spoonie).
I create videos five days a week (as long as my health allows) usually introspective topics, social topics, sharing my experiences and point of view with/on disability, body image, sex/gender/dating, gender equality, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language.")
![Why Do People Use Image Descriptions? [CC]](https://i.ytimg.com/vi/OiCKY2Q8Xg4/hqdefault.jpg "Why Do People Use Image Descriptions? [CC]
Image descriptions are an easy way to provide online accessibility for many different groups of people: including blind, visually impaired, color blind, autistic, ADD, dyslexic (images with text), people with low internet connection or memory, etc. Online accessibility has recently become very important to me as someone who’s recently become conscious of the lack of access. I know how excluded I can feel when a space is physically inaccessible to me, whether it’s a friend’s house, a venue, a restaurant, a bar, anywhere I might not be able to get into because I’m a wheelchair user… it feels awful. For the internet to be inaccessible is just unacceptable because the accommodations are so simple for those able to provide them. It’s not right that entire communities of people are excluded from content just because of their disability.
Image Descriptions http://stanford.io/1PVmMze
Image Descriptions and How To Write Them http://bit.ly/2083JJB
Image Descriptions and ALT TXT http://bit.ly/1SMCamh
How To Describe a Person [Sidenote: I don’t think one should assume gender or ethnicity, only include it if it’s known, that aside there’s other valid advice in here about how to describe people] http://bit.ly/1rBTkKS
[Thumbnail Description: Annie Elainey from the chest up, sitting at her desk, on the foreground there is an image description on the image describing the image itself, it reads [Image Description: Annie Elainey with short orange hair and black round glasses, she is wearing deep red lipstick and a violet tank top, her bedroom is blurred in the background]]
New Videos Monday-Friday #WithCaptions Subscribe!
If you enjoy my videos, please consider supporting this channel and/or my medical funds:
Patreon: https://www.patreon.com/annieelainey
PayPal: http://paypal.me/annieelainey
ABOUT ME
Hello, hello! My name is Annie, my pronouns are she or they, and Im a QWoC, body positive, disabled spoonie. I create videos five days a week (as long as my health allows) usually introspective topics, social topics, disability, body image, sex/gender/dating, feminism, etc, as well as a variety of music/artistic media, tags/challenges, and day-in-the-life vlogs.
*Currently working on captioning ALL videos, contributions are welcome!
CONTRIBUTE SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
-Click Subtitles/CC
-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language.
FIND ME ON THE INTERNET AND LETS BE FRIENDS!
http://annieelainey.tumblr.com
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http://twitter.com/annieelainey
http://facebook.com/annesegarra
Snapchat: AnnieElainey
Periscope: AnnieElainey")
![HOLD: Honoring Our Loves Departed [CC]](https://i.ytimg.com/vi/OiUa4hZT_O0/hqdefault.jpg "HOLD: Honoring Our Loves Departed [CC]
(CW: mourning, depression) I painted this one night in December but talking about it out loud was tough. In the past couple of years Ive had two good friends die and their losses like any other spark a mourning process but also triggers my depression/suicidal thoughts; losing them feels like a metaphorical fallen soldier at my side on a battlefield, its close and it feels foreshadowing of what could happen to me.
In this video, I sort of talk through that mourning process and how I found a rather healing way to think about them and the word I kept returning to was Hold.
Hold oppressive systems accountable, hold where we stand, hold the line for them, holding it down for them, holding them with us. Hold also means to embrace.
Rest in power, Diana and Tyler
https://www.facebook.com/DianaHemingway2
http://crpl-pnk.tumblr.com
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: https://www.patreon.com/annieelainey
PayPal: http://paypal.me/annieelainey
Amazon Wish List: http://a.co/gyCgqsf
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
-Click on the gear in the lower-right corner of the video
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-Click Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
https://www.youtube.com/timedtext_cs_panel?tab=2&c=UCznS4Pk3VcTIfDUuWrQtdzQ
FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
Tumblr http://annieelainey.tumblr.com
Twitter http://twitter.com/annieelainey
Instagram http://instagram.com/annieelainey
Snapchat http://snapchat.com/add/annieelainey
Periscope AnnieElainey
My Associate Store: http://astore.amazon.com/annielai-20
CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.")
