Annie Elainey
Hypermobility and Elasticity | A Very EDS Halloween [CC]
updated
Here’s the twist: at my subsequent appointment, I had this to consider: I’d be sitting the whole time, I parked very close, just a few feet from the door, and my body was stable enough where I could get inside without using my wheelchair.
I couldn’t help but feel anxious and ask myself:
1- Could I trust my body to successfully get me in there without a mobility aid?
2- Will the waiting room be empty with plenty of places to sit?
3- Would someone notice that I used a wheelchair earlier and walked into this appointment “just fine” now?
4-Would someone misunderstand my situation?
5-Would they question my need for a wheelchair?
6-Would they get confrontational about it?
It’s not fair that disabled people like myself have to fear harassment in this way. I want to shed light on a common misconception surrounding disabled parking spots. In this video, I delve into the reasons why someone might walk away from a disabled parking spot, highlighting the importance of understanding. Let’s challenge assumptions together and promote inclusivity! 🌍💙
[Video Description: Annie, with long black, wavy hair and glasses, wearing a black and white striped shirt, sits in the driver seat of her car talking to the camera]
[Video Description: in a bedroom, Annie, a fem presenting person with medium brown skin and long black wavy hair, wearing glasses and a grey tank top responds to a comment]
[Video Description: Annie, a Latina fem presenting person with long black wavy hair wears black cotton undergarments and sits in her wheelchair facing a mirror as a transparent clip of Candace Owens plays on the side of the screen.
In the clip she antagonizes a wheelchair user being part of an underwear campaign.
When her clip ends, Annie speaks in voiceover to acknowledge how common the erasure of disability is, not just in media, but in general, and that when the messages get too loud that she hopes those affected can remember that these antagonist do not speak for all of society and to turn to and be proud of our community.]
An ambulatory wheelchair user is someone who uses a wheelchair who has a limited (anywhere from just a single moment to longer periods of time) ability to walk among other physical capabilities but still needs their wheelchair for a variety of medical reasons.
Timestamps:
Do you have autistic relatives? 1:27
What’s it like having an autistic sibling? Do you have better communication? 2:21
“Why do you call yourself autistic versus a person with autism?” 3:47
"I wouldn't think you're autistic + Not saying you're not + Everyone can relate, specifically with the anxiety part" 5:35
"What are some ways you used to learn how to mask?" 9:49
"What is stimming?" 12:36
"How does one get a diagnosis?" 16:17
“Does your physical disability affect how you experience your autism?” 24:39
"Have you ever experienced meltdowns?" 25:54
"What’s something you think is really cool about your autism?" 26:15
"Is there something that makes conversations/emails more accessible to you?" 27:45
"What do you wish strangers would be more conscious of?" 28:57
"Advice for teachers?" 30:46
I also forgot "masking" was another vocab word. Masking is a complex and costly survival strategy for autistic people. It generally involves intentionally learning neurotypical behaviors and mimicking them in social situations. Sometimes masking focuses on hiding behaviors that people feel won't be accepted.
IFL vs PFL video
youtube.com/watch?v=SMKKze48Qbo
Pre-Diagnosis Support
autism.org.uk/advice-and-guidance/topics/diagnosis/pre-diagnosis/adults
**REMINDER “Aspergers” is no longer used. It is just Autism, autism is a giant spectrum.**
Some screening tests.
aspietests.org
http://rdos.net/eng/Aspie-quiz.php
Diagnosis
A Guide To Autism Diagnosis For Adults
autismawarenesscentre.com/am-i-autistic-a-guide-to-diagnosis-for-adults
I Self-Diagnosed My Autism Because No One Else Would. Heere's Why That Needs To Change
theswaddle.com/i-self-diagnosed-my-autism-because-nobody-else-would-heres-why-that-needs-to-change
Autism in Women
scientificamerican.com/article/autism-it-s-different-in-girls
the-art-of-autism.com/females-and-aspergers-a-checklist
childmind.org/article/autistic-girls-overlooked-undiagnosed-autism
healthline.com/health/autism-in-women
autism.org.uk/womensday
spectrumnews.org/features/deep-dive/costs-camouflaging-autism
aane.org/women-asperger-profiles
sciencedaily.com/releases/2018/01/180104160813.htm
verywellhealth.com/signs-of-autism-in-girls-260304
autism.org.uk/womensday
spectrumnews.org/features/deep-dive/costs-camouflaging-autism
nytimes.com/2007/08/05/magazine/05autism-t.html
iancommunity.org/ssc/girls-autism-hiding-plain-sight
wired.co.uk/article/underdiagnosis-autism-women-and-girls
http://www.spectrumwomen.com/general/the-chameleons-women-with-autism
Ehlers-Danlos Syndrome and Autism
autism.org/researchers-have-identified-a-relationship-between-ehlers-danlos-syndrome-and-autism
ncbi.nlm.nih.gov/pmc/articles/PMC7711487
ehlers-danlos.com/wp-content/uploads/2020vsc_caroline_baeza-velasco.pdf
researchgate.net/publication/346526195_The_Relationship_between_Autism_and_Ehlers-Danlos_SyndromesHypermobility_Spectrum_Disorders
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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.
shopdisney.com/cinderellas-coach-wheelchair-cover-set-by-disguise-428421228917.html?CMP=KNC-DSSGoogle&efc=179006&gclid=Cj0KCQjwv7L6BRDxARIsAGj-34rxokHCy8Q3PI3EqVRrZfUuKPlzCO6OEr2prI9Z22RpQiDaSOYXKWwaAsX4EALw_wcB&gclsrc=aw.ds
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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.
What opening up about it now means for me is that I officially claim it, I have taken that step forward out of the shadow of shame & internalized ableism. I will practice not being afraid of asking for the clarifications I need or excusing myself when over-stimulated or fatigued. I will not be embarrassed of my stims or when I need to pause to process something or work on my words…
When I speak, there is so much happening internally to get words to come out. I picture these collections of words and phrases that fly around above my head, and as I speak I am working speedily to try to crochet these words into a proper quilted sentence. Every time I successfully do it, I surprise myself, it feels impossible while it's happening.
One time I out-louded this visual because I had to say, “The words are floating so slowly now... I try to pull them towards my mind but the processing is taking forever. I’ll get half a sentence out and then find that there are no words left.. I lost my thought.”
My friends and my therapist have all been very encouraging and they have motivated me to share this part of myself hoping that it could do some good for someone else. I hope this video and anything that I share about my experiences can be used as a tool to help others.
Autism spectrum graph by https://my.vanderbilt.edu/autismandinnovation/understanding-the-spectrum/
Tweet by Imani_Barbarin twitter.com/Imani_Barbarin/status/1283778600014159876?s=20
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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.
Nice things to do:
Setting a mood; lighting, sounds, treats
Musicals
Horror movies (I’m a fan but definitely not for everyone)
Rewatching or reading comfort watches or reads
Learning sign language
Learning how to be more accessible to disabled folks online
New movies
New books
Painting/Coloring
Writing
Self Discovery:
--Myers Briggs 16personalities.com/free-personality-test
--The Color Code colorcode.com/choose_personality_test
--Enneagram truity.com/test/enneagram-personality-test
--Birth Chart
CafeAstrology (free) astro.cafeastrology.com/natal.php
Astrology ($) shop.astrology.com/birth-chart
CoStar costarastrology.com/natal-chart
The Pattern thepattern.com
--Kinsey Scale psymed.info/kinsey-scale-test
--Gender questioning thetrevorproject.org/trvr_support_center/trans-gender-identity
--Love Language 5lovelanguages.com/quizzes
-Big Five truity.com/view/tests/big-five-personality
--Attachment Style web-research-design.net/cgi-bin/crq/crq.pl
Mental Health Check:
Covid-19/Pandemic related healthline.com/health/mental-health/covid-19-choose-your-own-adventure-mental-health-guide
Relatively affordable counseling with video calls, phone calls, and texting as options:
Betterhelp (Referral link, by using this link we both get one free week!) betterhelp.com/rpc/c7868c3d62c7ade901
Talkspace talkspace.com
Suicidal thoughts suicidepreventionlifeline.org
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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.
[Insert apology for not uploading for so long here; a lots been going on, I've been sick and lacking the energy to produce, I felt lots of pressure to produce "perfect" content, and so screw it! Here we are!]
Timestamps:
1:29 Arms + Hands
4:00 Legs
8:12 Dysautonomia
9:59 Fatigue
11:23 Being visibly and invisibly disabled
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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.
Vulnerability Part 1: youtu.be/KhZa91oNN8E
Next check out the video we made on Eveleena's channel where we chat about some #QueerandDisabled topics!
youtube.com/watch?v=MMLfyU4geVk
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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.
Check out Vulnerability PART 2 where we brainstorm some helpful tools to help overcome fears of vulnerability, how to navigate being vulnerable with others, and more.
youtube.com/watch?v=luCaGa_-7LE
Then check out the video we made on Eveleena's channel where we chat about some #QueerandDisabled topics!
youtube.com/watch?v=MMLfyU4geVk
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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.
Part 1: youtu.be/0210yuQ79Aw
Lolo's video: youtube.com/watch?v=od8piGJNGb0
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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.
PART 2: youtube.com/watch?v=1Ev7IaUU6D8
SUBSCRIBE TO LOLO: youtube.com/watch?v=od8piGJNGb0
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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.
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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.
Our collab on her channel:
youtube.com/watch?v=Vt-yEfmf8jk&t
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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.
Illustrations by Ashe Walker
http://instagram.com/marsupialpudding
http://youtube.com/marsupialpudding
VIDEO SOURCES:
Straw Twitter Moments: mobile.twitter.com/i/moments/1024935203666624513
Straw Chart: twitter.com/rollwthepunches/status/1022355150554492929?s=20
Santa Barbara: reason.com/blog/2018/07/19/santa-barbara-bans-plastic-straws-proscr
Straw Denial: yahoo.com/lifestyle/viral-tweet-thread-shows-straw-230822656.html
Plastic straw statistic: phys.org/news/2018-04-science-amount-straws-plastic-pollution.html
Alternative Straws More Wasteful: nypost.com/2018/08/02/your-10-reusable-steel-straw-may-be-creating-more-waste
Alternative Straws Terrible Solution: sfchronicle.com/restaurants/article/Why-nonplastic-straws-are-a-terrible-solution-to-14432654.php?t=7a12bec1c5
Anaphylactic attack due to biodegradable plastic straw: twitter.com/somesaylezzels/status/1171221293959507968?s=21
Woman impaled by metal straw: nytimes.com/2019/07/11/world/europe/metal-straws-death.html
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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.
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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.
Links as promised!
Pre-cut oranges:
cbsnews.com/news/whole-foods-responds-to-6-pre-peeled-orange-twitterstorm
eater.com/2016/4/27/11517918/avocado-marks-spencer-pre-cut-controversy-uk
Pre-cut avocados:
gizmodo.com/pre-peeled-pre-halved-avocados-are-the-worst-example-o-1791256886
eater.com/2016/4/27/11517918/avocado-marks-spencer-pre-cut-controversy-uk
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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.
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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.
Ambulatory Wheelchair User YouTubers featured:
Rachel Anne (HotPinkSun) youtube.com/channel/UCTxb3XSB54m6jRhLq1b4fsg/featured
Annika Victoria youtube.com/user/AnnikaVictoria24
Sitting Pretty Lolo youtube.com/channel/UCKhnl8iyRPa1TNJrMO-UN-Q
Robyn Lambird youtube.com/channel/UC-gOEb5iYjhbRLfe-S3xiuA
Jessica Kellgren-Fozard youtube.com/user/MissJessicaKH
65PinkRoses
youtube.com/channel/UC23kxu8Ul4OqFkq2inwxwqA
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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.
Song used is Happier/The Middle mashup by DJ Pyromania youtube.com/watch?v=JaPDh8Lu5oA
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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.
Gender Expression and Disability ft Jessica Kellgren-Fozard: youtube.com/watch?v=Au1svE1bE8A
You're So Brave Podcast w/ Chase Ross and Aaron Ansuini: youtube.com/watch?v=_EHvVU4cfJI
GenderQueer Runway Radimo LA: youtube.com/watch?v=tnRNquJDxtU
SHOP: http://www.radimo.la
SUPPORT THIS CREATOR
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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.
SUPPORT THIS CREATOR
Patreon: patreon.com/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.
Jessica's video (Body Image & Disability): youtube.com/watch?v=mjo7tlwm2dk
Jessica's channel: youtube.com/user/MissJessicaKH
You're So Brave w/ Chase Ross and Aaron Ansuini (Gender, Body Image, Disability): youtube.com/watch?v=_EHvVU4cfJI&t
SUPPORT THIS CREATOR
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YouNow: AnnieElainey
CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
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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.
My Panels:
Chronic Illness: youtube.com/watch?v=3gzncklcOB0&t
Disability & Accessibility: youtube.com/watch?v=nskcWgnARwI&t
Collaborations from this VidCon:
You're So Brave Podcast with Chase and Aaron (Captions coming soon): youtube.com/watch?v=_EHvVU4cfJI&t
Disability and Gender Presentation: COMING SOON
DIsability and Body Image: COMING SOON
Pals Who Appeared In This Video:
Chase Ross: youtube.com/user/uppercaseCHASE1
Aaron Ansuini: youtube.com/channel/UChKlTFo745L9crVvLG19aCA
Connor Manning: youtube.com/user/AConMann
Andrea Lausell: youtube.com/user/AndreaLausell
Sarah (Princess and Scrivener): youtube.com/user/princessmscrivener
Jenny Lorenzo: youtube.com/channel/UCUglPO1el4LvRS2wAKKMgYg
Ash Hardell: youtube.com/user/HeyThere005
Grade Hardell: youtube.com/user/AshleyMardell
Jessica Kellgren-Fozard: youtube.com/user/MissJessicaKH
Rachel Anne (HotPinkSun): youtube.com/channel/UCTxb3XSB54m6jRhLq1b4fsg
Kat Blaque: youtube.com/user/TransDIYer
Stef Sanjati: youtube.com/user/ThePrinceSane
Chandler Wilson: youtube.com/user/MissPancake52
Stevie Boebi: youtube.com/user/SassiBoB
Dan: youtube.com/user/dannielleplease
dodie: youtube.com/user/doddleoddle
Alli: youtube.com/user/Alli
Lolo: youtube.com/channel/UCKhnl8iyRPa1TNJrMO-UN-Q
How To ADHD: youtube.com/channel/UC-nPM1_kSZf91ZGkcgy_95Q
Zach Anner: youtube.com/user/ZachAnner
Molly Burke: youtube.com/user/MollyBurkeOfficial
Josh Sundquist: youtube.com/user/JoshSundquist
Ashley Wylde: youtube.com/user/AshleysWyldeLife
MarsupialPudding: youtube.com/user/MarsupialPudding
SUPPORT THIS CREATOR
Patreon: patreon.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.
Exclusively for Patreon patrons, I have some bedroom lip-dubbing videos while in my mask:
Maybe This Time patreon.com/posts/20070231
Hellfire (no g-slur or spoken dialogue, just clips) patreon.com/posts/patreon-hellfire-20117120
Andro Gin / Jaxx Garcia info:
Instagram: http://instagram.com/androginking
Twitter: http://twitter.com/androginking
Tumblr: http://jaxxgarcia.tumblr.com
Youtube:
Andro Gin - youtube.com/channel/UCfkR-DmkcK4DwyWsWXcLqSw
JaxxandDucky - youtube.com/jaxxandducky
Drag Performances featured in video:
Andro Gin -
When You’re Evil/ Can’t Be Tamed youtube.com/watch?v=7SS3w5ZYdKQ
My Man (Wigwood) youtube.com/watch?v=jlhIrasUHZQ
Popular youtube.com/watch?v=RjNJi7wqdpw
Take Me or Leave Me youtube.com/watch?v=SoU5QaDei58
Brooklynn’s Underground Drag King Scene | Listen to America youtube.com/watch?v=H47Ly5fVn94&t
Maxxx Pleasure - youtu.be/3k4Fu1IA9qQ
Landon Cider - youtu.be/d30UQe4N5pU
Tenderoni - youtu.be/rmmKztB5MJg
MUSIC: Spooky Ride by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/by/4.0)
Source: http://www.twinmusicom.org/song/250/spooky-ride
Artist: http://www.twinmusicom.org
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: patreon.com/annieelainey
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Amazon Wish List: http://a.co/gyCgqsf
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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.
Pride Rewind Tag Questions
1. How do you identify?
2. Share a story of you doing something that probably hinted to everyone around you that you were queer/trans/etc.
3. When was the first time you had an inkling you were different?
4. When did you first learn about being gay/queer/etc.?
5. Who was your first queer celebrity crush?
6. Tag four people to do the tag too!
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: patreon.com/annieelainey
PayPal: http://paypal.me/annieelainey
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CONTRIBUTE CAPTIONS/SUBTITLES FOR THIS VIDEO
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FIND ME ON THE INTERNET
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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.
T-shirt I'm wearing:
My TeePublic store teepublic.com/t-shirt/2786490-nobody-knows-i-have-eds
Or you can sign up to be notified when the Bonfire campaign comes back http://bonfire.com/nobody-knows-i-have-eds
My EDS Playlist: youtube.com/watch?v=moGxnPIsu6k&list=PLzbLZiJEtlO6NE3AtdWkm2gZKiMcfhw_X
Tagged by FashionEyesta youtube.com/watch?v=a48x-jJIdpw&t
Questions for the tag:
What is your disability and how does it impact you?
What is the most common misconception that you experience in regards to your disability?
Which misconception annoys you the most?
Do you do anything to combat these misconceptions?
What more do you think can be done to combat the misconception around your disability?
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: 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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LIST OF VIDEOS YET TO BE CAPTIONED
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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.
EDIT: For those who may not know, neurodivergence is not the same thing as cognitive impairment, hence I said I've been neurodivergent and was already bullied for that, cognitive impairment relates to the same ableism that made my neurodivergence a target, so they are related in that way.
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: 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"
-Click "Add subtitles/CC
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LIST OF VIDEOS YET TO BE CAPTIONED
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Periscope 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.
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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.
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
facebook.com/DianaHemingway2
http://crpl-pnk.tumblr.com
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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.
I accidentally cut out a part of the end of my letter from my recording but I think it's kinda important in regards to what I've written here so...
"PS: Thank you for everything you do and everything you don’t do; for being a part of my life that so heavily influences how I experience it and what I learn throughout it because I will not sit quietly with what I learn. Together we can be of use, together we can impact change, we can do good, together we can make an incredible life."
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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.
In this video, I talk about how the decision to get a puppy was made, how caring for her has gone in regards to my illnesses, her character, and whether or not she may become a service dog.
I forgot to explain her age in the video so I'll do so here. She IS young, she was separated from her mom young, it's not customary for puppies to separate from mom and litter until about 2 months but that's the situation we found ourselves in (we didn't know how young she was until she was already settled with us). It's not optimal but it happens and we're doing all the work to make sure she gets all that she needs.
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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.
Jessica's 10 Disabled YouTubers video: youtube.com/watch?v=RScphvPibsU
20 Disabled YouTubers youtube.com/watch?v=P8iCxdhYqfE&t
Disabled YouTubers Playlist youtube.com/playlist?list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P
1) Jessica Kellgren-Fozard (Captions) youtube.com/watch?v=BDMrO8t_jyo&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=35
2) Chella Man (Captions) youtube.com/watch?v=0HoUbbSg5_U&t&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=17
3) Rogan Shannon (Captions) youtube.com/watch?v=CoWh59a5sDE&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=73
4) JD Dalton (Captions some) youtube.com/watch?v=ptKwWTy3cec&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=34
5) Stump Kitchen (Captions) youtube.com/watch?v=-M_qYMI88nI&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=84
6) Shelbykins youtube.com/watch?v=-dqJeUaSXic&index=102&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P
7) Jody Yarborough (Captions) youtube.com/watch?v=mdJMoacQY64&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=36
8) Nyle DiMarco (Captions) youtube.com/watch?v=JsHVZkxqzIU&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=61
9) Rian Phin youtube.com/watch?v=18c_oZ_3slg&index=103&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P
10) Chronically Jaquie youtube.com/watch?v=uIEnc-865KM&t=&list=PLzbLZiJEtlO6r3nOzeLOFvcIrPVy9V05P&index=20
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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.
Since early 2014 and my first EDS related surgery, I've spent most of my time sick in bed and although this is my daily life, I don't really visually share that aspect of my life as often as I do my more functional days.
I guess I feel like it's not worth sharing, that it's too heavy, too boring, too depressing, that it's so damn repetitive, that it would become bothersome to my audience if they saw this part of my life as much as I experienced it.
This is my truth, most days look like this, chronic pain, fatigue, tachycardia, fainting spells. lots of sleep, lots of horizontal statuses. This week, the week I posted this video, my POTS (Postural Orthostatic Tachycardia Syndrome, a comorbid condition of Ehlers-Danlos) and chronic fatigue hit me so hard, I could barely open my eyes, I could barely open my mouth to speak, my entire body felt like slow heavy tar was running through my veins and weighing me down.
These days outnumber my better days by so much but it makes my better days all the more magical and glorious.
Despite many adversities and traumas I've confronted in my life, despite mental illness being an obstacle, I've considered myself a person that at my core is filled with light, gratitude, joy, and love, and I think becoming chronically ill may have just intensified those aspects of myself.
My depression remains and chronic illness demands a perpetual state of mourning, for abilities, life changes, the people we lose to disease, the people we lose to the world where our existence is resistance, and the people we lose because they no longer wish to have a relationship with us.
I missed out on making a 2016-in-Review, I definitely uploaded more first-person videos but I didn't really get do a fantastic job at documenting life outside of that. For the narrative of this 2-year review, it works though; it's a good representation of how the non-functional days/moments outnumber the functional days/moments. This is what the past couple of years have looked like for me, a lot of illness, and through that illness, still many moments of joy and love.
SONG: Sick of Losing Soulmates by dodie youtube.com/watch?v=8qGFAkyfjDU
[Transcript: Text appears on the screen: "I've been dealing with a lot of mourning and loss in the last couple of years; not just people but the life I once knew, the body I once knew.
"Sick of Losing Soulmates"
I'm sick of losing things; I'm sick of losing abilities, friends, and loved ones to this disease and to the world where our existence is resistance.
Loss plays such a huge role in chronic illness, it's a perpetual state of mourning.
This illness can take away so much from me but I hope never to lose my capacity for gratitude, joy, and love."]
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1) Not While I'm Around - Sweeney Todd 0:00-1:18
2) Dear Theodosia - Hamilton 1:27-4:36
3) Distant Melody - Peter Pan 4:41-6:22
4) Breeze Off The River - The Full Monty 6:26-8:46
5) Stay With Me - Into the Woods 8:50-10:23
6) You WIll Be Found - Dear Evan Hansen 10:28-15:15
Struggling to keep up with errands/physical activities and still record a daily video, chronic fatigue and chronic pain have me down for the count after pushing hard with all the daily tasks so although ASMR is not something I typically do, here is something I attempted and put together before bed last night.
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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.
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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.
6/10 by dodie Instrumental: youtube.com/watch?v=YZqf9IIDRsk
Want my sweatshirt? Click this link then click "I would buy this" to be alerted when they're available again! http://bonfire.com/thefutureisaccessible
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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.
PS: I could've got caught up today with Vlogmas and published two videos but retrograde (yes, I'll blame it forever) completely ruined the audio for a video I had edited and near published. Sigh. I'll still be attempting to catch up!
Background instrumental: youtube.com/watch?v=kMBnlqQnvjI
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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.
Link to Amythest's video on #BoycottToSiri (they created the hashtag) youtube.com/watch?v=TGBQLBIPAi0&t
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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.
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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.
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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.
I was never the tidiest person but becoming chronically ill has kind of worsened my cleaning habits AND made me feel crappy about it.
It gets worse because even if I wanted to (and sometimes I genuinely, sincerely want to. Is that me maturing? Or is that me realizing that I took my able body for granted?...) my body hits some hard limits. It's hard for me to stand longer than a minute or so, standing, reaching my arms up (like to hang clothes in the closet), or even bending down and hanging there or getting back up too quickly can trigger my dysautonomia, sometimes my arms experience more fragility and lifting certain weights can cause me injury or just hurt.
Today's video is the epic adventure of trying to get my room clean within a day, no naps, just a lot of pain levels peaking and having to stop whatever I'm doing in order to attempt to lower the pain enough to be able to function. The pain doesn't stop, it's always there; if my chronic pain were a person, they'd be permanently twisting the skin of my arm (metaphorically... because my pain is more often in my feet, legs, and back), just sometimes the skin twisting isn't enough and the person strikes me with a hard object instead and that's when I need some real recovery time.
At the start of the video I used the wrong language, I said, "whether I want to sleep or want to be awake" I wasn't actually referring to emotional desire but rather where I was chemically. The strange feeling that I was trying to describe before I interrupted myself was that I was physically exhausted because I did not sleep well due to pain levels but I reached the point of spiked adrenaline (from the lack of food/appetite and sleep perhaps. Adrenaline spikes in survival mode). This feels physically like dehydration, exhaustion, derealization, etc. but my body is filled with enough adrenaline that IT; my body, "wants" to keep moving.
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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.
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Rikki's video:
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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.
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: 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"
-Click "Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
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Periscope AnnieElainey
IN THIS VIDEO
Mic used: http://amzn.to/2ahAuT5
Camera used: http://amzn.to/2a5jPCq
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.
I think I mentioned I have hooked up with people since my EDS health decline and using mobility aids, but one night stands where I have yet to experience a pain flare in front of someone, or injure myself in front of them, faint in front of them, get gastro issues in front of them, etc. is a bit different than something long-term where they definitely would be there for those things.
Please don't take my current and temporary insecurities (don't expect them to last long) as a reason to feel hopeless! This is just where my mind is right now. There are definitely so many current couples that show me it's definitely possible, here on YouTube there is:
Jessica Kellgren-Hayes youtu.be/Ay_k5PsmJUA?t=2m19s
Chronically Jaquie youtu.be/w9B-HtmCoLs
Meredith and Kate youtu.be/qwiv36NpIrU
Simon and Martina youtu.be/DnT3FgV7pzU // (#BuildALadder) youtu.be/f3uF3EpSZMw
The Frey Life youtu.be/jHYw-gQimws
SUPPORT THIS CREATOR
If you enjoy my videos, please consider supporting this channel!
Patreon: 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"
-Click "Add subtitles/CC
-You can contribute Closed Captions in English or subtitles in ANY other language
LIST OF VIDEOS YET TO BE CAPTIONED
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FIND ME ON THE INTERNET
Facebook http://www.facebook.com/ann.e.segarra
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Periscope AnnieElainey
IN THIS VIDEO
Mic used: http://amzn.to/2ahAuT5
Camera used: http://amzn.to/2a5jPCq
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.