Annie ElaineyIn this video, I am joined by Jessica Kellgren-Fozard (her wife Claudia and my friend Rachel in the background) to discuss gender presentation, gender roles, and how disabilities can intersect with that; how our disabilities might impact the way we present ourselves. Be sure to check out the second video we did together on her 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 disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.
Gender Expression and Disability ft. Jessica Kellgren-Fozard [CC]Annie Elainey2018-07-27 | In this video, I am joined by Jessica Kellgren-Fozard (her wife Claudia and my friend Rachel in the background) to discuss gender presentation, gender roles, and how disabilities can intersect with that; how our disabilities might impact the way we present ourselves. Be sure to check out the second video we did together on her 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 disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.WALKING away from a disabled parking space?Annie Elainey2023-10-28 | During a day of errands, I had to use my wheelchair to get around a shop. Following that, I had an appointment on the other side of the same shopping complex. So I drove across the parking lot to get closer.
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]#AmbulatoryWheelchairUsersExistAnnie Elainey2023-10-25 | ...Finished my crying appointment (aka therapy) and really needed these words by @KobeCampbell1893Annie Elainey2023-04-22 | ...How ableism can make it hard to be visible as a disabled personAnnie Elainey2023-03-30 | Response to “Using my mobility aid takes so much courage. Just to comfortably navigate the world takes a lot of strength, both physically and mentally” on my most recent video where disabilities being represented in advertising was met with antagonism.
[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]When disability visibility is antagonized…Annie Elainey2023-03-28 | It’s hard fighting internalized ableism when our exclusion is seen as the norm and there are so many people out there who would rather that not change, but damn, I hope you fight it! ❤️♿️
[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.]Reminder that it’s okay to stop pushing til your breaking point and use the support tools you need!Annie Elainey2023-02-08 | ...What is an ambulatory wheelchair user?Annie Elainey2023-01-21 | Excerpt from my video “ambulatory wheelchair users exist”
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.2022 recap and yes… we’re gonna try and make a return to YouTube in 2023Annie Elainey2022-12-31 | ...Autism Q&A [CC]Annie Elainey2021-04-09 | If you asked me an autism-related question last year after my coming out video, it may be in this video! Timestamps below for easier navigation! Resources and other links as well! Beneath it all are links to help support my content!
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.
Please consider supporting my content via the links below, it would help me greatly to delegate some of the processes of content creation to editors, captioners, etc.
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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.Cinderella Wheelchair Cover Set by Disguise!Annie Elainey2020-09-01 | A quick video of my building my Cinderella Wheelchair Cover Set by Disguise! Thank you to shopDisney for sponsoring this video! #AD
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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’m autistic [CC]Annie Elainey2020-08-04 | This feels pretty vulnerable to talk about… This is something that is just simply a part of my life, where ableism/internalized ableism have left me with trauma to work through (and I AM working through it) and that I could've continued to keep private for just those closest to me to know.... (cont.) 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/
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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.Self-Care Tips For Your Brain #AtHome [CC]Annie Elainey2020-04-27 | I have been at home and dealt with periods of isolation for a few years now as a chronically ill person and so I thought I'd share with you all the things that help me get by, be joyful, stay mentally healthy, and continue my personal growth. Check out a ton of info below!
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
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
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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.The EDS Things Youd Miss Even If We Hang Out [CC]Annie Elainey2020-03-08 | Here on the internet, there is a lot about the lives of chronically ill people that viewers don't know about, but today I wanted to talk about the things even the people around me miss, don't suspect about my experience with chronic illness because it rarely ever makes itself known on my face or visibly noticeable on my body. This is not even ALL of it but I wanted to share the EDS thing I feel a lot of people miss even when we share space together IRL.
[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 Pt. 2: How do we conquer fear of vulnerability? Ft. Eveleena (Ivy Les Vixen) [CC]Annie Elainey2019-12-26 | PART 2 of 2: In this video we move on from part 1 where we discuss what exactly is vulnerability and what makes us feel vulnerable, to explore some ways we might try to overcome our fears about vulnerability, being choosy with who we are vulnerable with, learning how to receive vulnerability from others, and how self-love and affirmations can help us to become our own safety net.
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
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.Vulnerability Pt. 1: What makes us vulnerable? Ft. Eveleena (Ivy Les Vixen) [CC]Annie Elainey2019-12-26 | (PART 1 of 2) Eveleena (aka Ivy Les Vixens) stops by and chats with me on the topic of vulnerability; we talk about what exactly is vulnerability, what exactly makes someone vulnerable, do we feel vulnerable with the work that we do, how queerness and mental illness/trauma affect our vulnerabilities, emotional versus physical intimacy, and who deserves your vulnerability.
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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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.How We Decided It Was Time For a Wheelchair w/ ALS and EDS #AmbulatoryWheelchairUsersExistAnnie Elainey2019-12-02 | PART 2 OF 2: In this video, we discuss what was the process of getting a power wheelchair, what were the events that led up to needing a power wheelchair, and navigating the medical world as chronically ill people.
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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.Why We Use Power Wheelchairs w/ ALS and EDS #AmbulatoryWheelchairUsersExistAnnie Elainey2019-12-02 | PART 1 OF 2: In this video, we talk about our personal experiences with our disabilities, how it feels in our bodies, how we physically navigate spaces in these bodies, and why power wheelchairs are the best mobility aids for us to use.
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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.120 hours with Ehlers-Danlos SyndromeAnnie Elainey2019-11-06 | Follow me on Instagram! @AnnieElainey I caption my stories and provide image descriptions on my photo posts! 🙏 — In mid October I decided to attempt documenting how my chronic illnesses (Ehlers-Danlos Syndrome & co.) can impact my daily life for 5 days (or 120 hours). The cough I was experiencing was the aftermath of some bad congestion, those sometimes put me into coughing fits where I can’t breathe. I don’t know enough to talk about that but there is reason to believe that certain breathing problems I have are EDS related as well. Let's share hacks and relatables in the comments!
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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.Congenital Amputee Does My Makeup #GRWM ft. Stump Kitchen [CC]Annie Elainey2019-10-14 | Get ready with me... and Alexis from Stump Kitchen as she attempts to do my makeup right before a panel. Join us as we goof around and chat about beauty, travel, disability stuff!
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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.Straw Bans Are DANGEROUS For Disabled People [CC]Annie Elainey2019-10-07 | Plastic straws are necessary medical tools and creating legal bans endangers the lives of disabled people. In this video I talk about the history of its use, why alternatives do not work, the variety of ways banning them is dangerous and stigmatizing, and my hope that environmentalism becomes more intersectional and acknowledges the needs of disabled people without dismissing them as lazy or wasteful.
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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.Reacting to Lazy Product Ad Comments [CC]Annie Elainey2019-06-08 | In my previous video, we talked about how hatred for laziness impacts disabled people, in this video we're going to respond to some comments beneath the ads for some "lazy" products to discuss how they are used as accessibility tools. You say lazy, we say accessible.
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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.How Hatred For Laziness Impacts Disabled People [CC]Annie Elainey2019-05-07 | Today's video is a little bit of a long overdue examination on how social hatred for "laziness" very easily weaves itself into ableism. Laziness is characterized by unwillingness; limitations are not equivalent to laziness, however, people rarely take the time to consider the difference. In my experiences as a chronically ill person, I've been called lazy literally for being chronically ill. People assume laziness of young people with disabilities, hence this overwhelming prejudice and assumption that mobility aid or not, if a young person is using accessible resources they MUST be lazy and deserving of scorn. Then comes the impact on how this hatred for laziness ignites people to create campaigns to ban or discontinue products that are accessible resources for disabled people, denying them accessibility, followed by the more blatant imagery I think I've ever seen wherein the commercial for an accessible item... a powerchair was used as a symbol for laziness. Let's discuss!
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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.Parking Lot Accessibility (USA) [CC]Annie Elainey2019-02-22 | Whether you use accessible parking spaces or not these are some things I think are important things to consider when parking your car. We'll discuss what are access aisles and access lanes, why even someone who walks might need the accessible space, why access aisles/lanes are necessary to keep clear, and more!
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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 Users Exist [CC]Annie Elainey2019-02-15 | #AmbulatoryWheelchairUsersExist I have heard various ways that people use to determine if someone is faking using a wheelchair; from"if a person using [a mobility aid] starts to run" (in the scenario I heard, it was a cane user running for a bus) to "if a wheelchair user has worn down shoes". In today's video I talk about some of the many reasons there are for people to use wheelchairs, how this prejudice is reinforced, and how to work to prevent violence/harassment toward disabled people with non-apparent disabilities.
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
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.Happier in the middle | 2018 in Review [CC]Annie Elainey2019-01-05 | I tried to do a better job of documenting the good days this year and I hope in 2019 I'll 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!
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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.Navigating Disability Fashion and Gender Presentation [CC]Annie Elainey2018-10-10 | In this video, I discuss how my disability (Ehlers-Danlos Syndrome); the chronic pain and other symptoms I may experience affect the way I dress and in effect the way I may present my gender expression.
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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.HELLO, IM BACK! LETS CHAT! [CC]Annie Elainey2018-10-03 | I haven't uploaded in a while so let's catch up!
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
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.VidCon 2018 - Gender, Chronic Illness, Disability [CC]Annie Elainey2018-07-18 | I was invited to be a Featured Creator at VidCon in Anaheim (6/20-6/23) again this year and had an amazing time getting to be among community and share space with you all and share dialogue on topics I am very passionate about! Here is a scrappily put together video of what happened on my VidCon trip! Check out panels, collabs, and links to who appeared in this video below!
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
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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.Drag King Make-Over with Andro Gin [CC]Annie Elainey2018-07-03 | Jaxx Garcia (Andro Gin) gives me a Drag King Creature make-over as we discuss what exactly a Drag King Creature (or what her style of drag) is, as well as queer villain tropes in media and how they've creatively inspired her, and her least favorite misconceptions about drag kings.
Exclusively for Patreon patrons, I have some bedroom lip-dubbing videos while in my mask:
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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 [CC]Annie Elainey2018-06-17 | Tagged by Jackson Bird and Lindsay Amer of Queer Kid Stuff youtube.com/watch?v=Y2xi5N-b1rg
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!
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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.Disability Misconceptions Tag (EDS) [CC]Annie Elainey2018-06-14 | This is the Disability Misconceptions Tag! Let's talk about how EDS impacts my daily life, how not all of us are gonna look like the textbook images (ie contortionists and severe stretchy skin), how ambulatory wheelchair users and fluid disabilities exist, the harm misconceptions can bring and how we can combat these misconceptions.
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?
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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 have cognitive dysfunction (Brain Fog) [CC]Annie Elainey2018-05-22 | While having a mild brain fog episode I decided to try to talk about brain fog, what it is, how it's been affecting my life, and working through my internalized ableism (and where it comes from). Something I didn't really talk about was different coping mechanisms (like rewinding content, using audio descriptions AND captions when watching films, etc) so I'd love to hear yours! Leave them in the comments below!
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.
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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 does it mean to overcome disability? [CC]Annie Elainey2018-03-29 | I hear this phrase a lot in a few variations, "overcoming disability", "defying disability", "disability did not stop them from..." and on and on, so I wanted to really sit with how this statement is used, what it implies, and if it is accurate.
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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.HOLD: Honoring Our Loves Departed [CC]Annie Elainey2018-03-22 | (CW: mourning, depression) I painted this one night in December but talking about it out loud was tough. In the past couple of years I've 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, it's 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.
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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.Dear Body | Annie Elainey [CC]Annie Elainey2018-02-08 | A letter to my body for #DearBodyProject. I used to hate my body. There are people out there who think of course I would or I should hate my body, whether they believe so because my body is brown, plus size, disabled, or any other reason. I've made peace with my body; we still get into fights sometimes (BDD episodes/triggers) but in general, I think I've created a much more peaceful relationship with my body than I once had. My body, being what it is, has allowed me to see the world through a particular lens, to experience things in a particular way and I am truly grateful for the adventure and opportunity.
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.Having EDS and taking care of a new puppy: BAILEY! [CC]Annie Elainey2018-02-05 | It's been a couple weeks with Bailey now and before she gets any bigger (she's growing so fast!) I thought it's time you all meet her! Bailey's Amazon Wishlist! http://a.co/9Gfvrv3
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.10 MORE Disabled YouTubers [CC]Annie Elainey2018-02-03 | After the first batch of 20, we are back with more and this time I shared the work with Jessica Kellgren-Fozard! She’s got 10, I’ve got 10, and you’ve got some subscribing to do!
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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.SICK of Losing Soulmates | 2016-2017 in Review [CC]Annie Elainey2018-01-25 | (CW: chronic illness, chronic pain, fainting spells) In late 2016 after almost three years of active search for a diagnosis and progressively getting sicker and losing more abilities in the meantime, I was diagnosed with Ehlers-Danlos Syndrome (EDS).
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.
[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."]
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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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 Came True & Whats Next | VLOGMAS DAY 13 [CC]Annie Elainey2017-12-16 | Getting ready to arrange/update my vision/mood board so I'm looking back on this year's successes and not-so-successes and what my aspirations are for the new year! Let me know what great things happened to you this year and what are some of your goals for the future!
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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.Feeling like a 6 out of 10 | VLOGMAS DAY 12 [CC]Annie Elainey2017-12-14 | The past three days have mostly been me sleeping, wincing, tummy problems, fatigue, chronic joint pain and migraines #ThanksEDS. This is a casual ~karaoke~ cover of 6/10 by dodie to soundtrack some clips of me sleeping and wincing and stuff. #SpoonieLife (and I'm aware there's a lot of noise, this is the product I can currently give. Happy Vlogmas! Now we see if we can play and win the catch-up game!)
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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.Take a Break | VLOGMAS DAY 11 [CC]Annie Elainey2017-12-13 | A short quick video because EDS got me good (I'll spare you the gory and bodily function details) from Sunday onward. If you need a break, take it. Be good to yourself, give yourself what you need, we'll be here.
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!
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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.Recovery Day & #DisabledTwitter Topics | VLOGMAS DAY 10 [CC]Annie Elainey2017-12-11 | This week of activities really wore me out, back pain and fatigue kept me in bed most of the day but my mind was definitely pondering topics and current events from this past week on #DisabledTwittter so half the video is a mini chat about that but definitely want to refine my thoughts and make videos focused on the individual topics later on. Please share with me what you think!
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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.Wynwood Walls and Movies in the Park | VLOGMAS DAY 9 [CC]Annie Elainey2017-12-10 | It's been a surprisingly busy week and it's really wearing me out but these are special occasions so I'm 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!
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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.Room Tour 2017 | VLOGMAS DAY 8 [CC]Annie Elainey2017-12-09 | (CW: motion sickness, hand-held moving camera, 360 spin 0:45-0:48) With a clean room, I decided it was finally time to share a little tour of my room and what I keep in there! I did you all a favor and did NOT do a Cribs parody, although I definitely considered it! Haha! This is all incredibly off the top of my head and I probably could go more into detail about certain things and just didn't think to, haha, so if you have any questions leave them in the comments! Let me know your bedroom traditions, habits, and structures!!
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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.Cleaning with Chronic Pain | VLOGMAS DAY 7 [CC]Annie Elainey2017-12-07 | READ DESCRIPTION BELOW-- (CW: health, chronic pain, possible motion sickness warning due to sped up shots of movement from 00:58-1:14 and 2:00-2:07)
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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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.Whats On My Xmas Wishlist 2017 | VLOGMAS DAY 6 [CC]Annie Elainey2017-12-07 | Inspired by Rikki Poynter, I wanted to share with you some of the items I have on my wishlist and why I want them, what I like about them, story times, etc. Let me know what's on your wish list and why!
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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.RETROGRADE IS TRYING TO RUIN VLOGMAS | VLOGMAS DAY 5 [CC]Annie Elainey2017-12-06 | (CW: food preparation, curse words, rapid clips 10:10-10:12 & thanks commenters for informing me: a Melanie Martinez song until 2:09 from the radio playing in the background) Ever seen pain level: Grumpy Annie? It's here. Mostly a typical chronically ill/spoonie day, low spoons, moderate to high pain levels, and DEALING WITH ERROR AFTER ERROR trying to render, export, and upload the video. I think this is the most grumpy I've ever been in a vlog, the circumstances were infuriating and my pain levels were high. I'm partially kidding about retrograde, I'm agnostic about it, blaming retrograde for tech problems is my venting. Watch as I battle my painful symptoms and the Retrograde monster for my chance at a perfect Vlogmas!
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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.Feeling Attractive While Chronically Ill | VLOGMAS DAY 4 [CC]Annie Elainey2017-12-05 | (CW: mentions of physical intimacy, adjustment talk so maybe some internalized ableism) Dec 3rd was International Day of People with Disabilities and I was stuck in bed all day with my back and legs stuck in a pain flare. These past few years of EDS kicking my butt into isolated and symptomatic bed rest hasn't really allowed me to go on proper dates and date someone new so this video is about my current fears and insecurities regarding that. I focus on what my body will do, how embarrassed I'd feel, but it definitely extends to how a new person might react; would they infantilize me and treat me like I'm made of glass? Would they get grossed out? Would they awkwardly ghost me because they feel like I'm too exhausting to be around because of my symptoms?
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:
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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.