I did it! I vlogged nearly a whole day! I got a bit carried away and filmed a lot more of Granville island than I meant to. I hope the footage comes out okay ^_^ my hope is editing these will be a little quicker. I need to learn to be less precious with them! Almost impossible for an obsessive perfectionist.
When I was a little girl, I saw myself as beautiful. Like fairy-princess riding a glass carriage to the ball kind of beautiful. I woke and ate and dressed and played and slept believing this. When I got a bit older, I started to pick up on the way people looked at me. They rushed to help me, seemed sad or even proud when I smiled, and stared at my paralyzed legs. I noticed that none of the fairy-princesses on the screens looked anything like me. And this is when I started to piece it together – girls that looked like me were usually pitied, could maybe become inspirational, but were never beautiful. So I found ways to hide myself, obscure my imperfections, point the camera away from my paralyzed legs. But here I am, thirty years old, finding my way back to the little girl who saw herself as beautiful, who wasn’t afraid to put on a lacy floor-length dress, just to go to the library, who didn’t try to hide, who felt worthy of admiration. Day by day, I am building my beauty uniform – the space I slip into that invites me to relish in my own particular beauty, to be seen without shame.
My YouTube upload from last week. I’m both a wheelchair user and I receive all essential nutrition via a feeding tube that runs into my intestines. This doesn’t mean I can’t still enjoy the normal pleasures of life, sometimes it just means adaptations, and smaller amounts of said pleasures than is considered ‘normal’.
did the preliminary research, it does not appear to be a scam, the parent organization SciAccess grew out of conversations at scientific conferences about equity and inclusion in STEM. Both ZERO-G social media pages have confirmed the partnership
“The goal of this mission is to bring together the largest and most diverse group of disabled crew members in a weightless environment, with the hopes to learn how to adapt and make accessible outer-space travel for disabled space explorers, scientists, and researchers. The Mission: AstroAccess parabolic flight is scheduled to take place on October 17, 2021, launching from Long Beach, California.
“Our mission is to change outer space and change the world. If you are a disabled person who is confident, enthusiastic, playful, and literally willing to float upside down to change the future, we are looking for you!” says Dr. Sheri Wells-Jensen, Associate Professor of Linguistics at Bowling Green State University.”
There is an impressive team behind AstroAccess, you can find the full list on their site here.
Here’s a couple of those bios.
“Anna Voelker is the founder and Executive Director of the SciAccess Initiative, an international program dedicated to advancing disability inclusion in STEM. Through SciAccess, they lead numerous science inclusion initiatives, including an annual conference launched by their receipt of the 2018 Ohio State University President’s Prize. Anna specializes in accessible space science outreach for diverse learners and has worked extensively with blind and low vision students using 3D printing and data sonification. In June of 2021, Anna joined the Aspen Science Center as its new Executive Director. Anna is a 2018 Brooke Owens Fellow and previously worked at NASA Kennedy, NASA Goddard, the Space Telescope Science Institute, the International Astronomical Union’s Office of Astronomy for Development, and the Aerospace Corporation.”
“Eric Ingram is the Founder and CEO of SCOUT Inc., a company de-risking space operations with sensor suites that enable spacecraft to see and understand the area around them. He also currently serves on the Board of Directors for the Space Frontier Foundation. He was previously an Aerospace Engineer for the Licensing and Evaluation Division of the FAA’s Office of Commercial Space Transportation, where he gained expertise in the regulatory environment. Prior to this, Eric was an engineer for Deep Space Industries, where he designed cubesat subsystems for testbed missions. Outside of the space industry, Eric previously served as the President of the United States Wheelchair Rugby Association, leading the USWRA to its largest budget surplus in its 30+ year history. Eric has competed in the sport of wheelchair rugby for 15+ years, competing domestically for several club teams, and internationally with the US Developmental team. Eric holds a Bachelor of Science in Physics from Old Dominion University, most of a Master of Science in Electrical Engineering from the University of Houston, a sport pilot certificate, and is working towards SCUBA certification.”
“Dr. Sheri Wells-Jensen is an associate professor of linguistics at Bowling Green State University in Bowling Green, Ohio. Along with various aspects of astrobiology, her research interests include social aspects of human colonization, disability, the relationship between language, embodiment and thought, language evolution and ways in which alternative sensory inputs could influence the evolution of scientific thought. She is on the board of SOCIA (Social and Conceptual Issues in Astrobiology and METI (Messaging Extraterrestrial Intelligence) International.”
“Dr Jamie L. Molaro is the Executive Director of Disabled for Accessibility in Space (DIAS). Dr. Molaro is a planetary scientist at the Planetary Science Institute and located geographically with host institution the Caltech/Jet Propulsion Laboratory. Her research focuses on understanding the way that rocky and icy materials fracture and break down, driving landscape evolution on asteroids, comets, and moons. She is also a team member on NASA’s OSIRIS-REx mission to retrieve a sample of rock from an asteroid surface. Service is an integral part of Molaro’s career, including organizing and running exhibitions and workshops on science and data-driven art, and leading DAIS (Disabled for Accessibility in Space). DAIS is a peer networking, support, and advocacy group for disabled and chronically ill people in space science and related fields and professions, and proud collaborator in Mission: AstroAccess.”
Being the “Black Sheep” in the family, this reminds me so much of my family. I’ve been dealing with colorism in my family for some time. Why is that?! I wish I knew the answer. What I do know is that even though they talk hella shit about me, they secretly want my life. How is it that you can bully me, criticize me, body shame and bash me, yet get upset when I choose not to spend time with you?! Please tell me, how does that make any sense!? Our families, I’ve learned that they can be our first bullies in our lives. And when you point it out to them, to them it is “tough love”. That’s not tough love. Let’s be real about what it truly is! It is manipulation, narcissism, jealousy, insecurity and straight out hate that people project onto you because they aren’t happy. I’ve been reading The Four Agreements by Don Miguel Ruiz. The second agreement is to not take things personally because the person who is doing all the negative things is projecting their true feelings towards you. I let what someone says go into one ear and out the other a lot. I refuse to get myself hurt because of others actions, words and energy. Their pain has nothing to do with me. I love my family but I can admit I don’t like a lot of them. I set healthy and safe boundaries to protect myself. I don’t know who this may resonate with. I hope you know that you are great the way you are. Just because your family may treat you in a certain manner, doesn’t mean you are suppose to be ok with it. Set boundaries and if that me separating yourself for a while, then please do so! Please know that You Matter! Keep fighting!
My life feels very heavy as we speak. I just went through a hyper mania episode about a week ago. I now feel the blows of depression and anxiety hit me now. I feel horrible once I realize what I have done during the time of being in the hyper mania state. With my health constantly changing, it totally can affect the brain and mental health. I’m still having issues with my feeding tube, which is beyond my control. I wanna control everything. It isn’t place to do so. I know it is dark right now, but I hope to start seeing the light at the end of the tunnel really soon. Keep fighting!
I feel so alone when it comes to having EDS. I miss my old life so much. I truly want to be happy again. I’m working hard to figure out what makes me happy as well as how to be happy again. It is a feeling that is foreign to me right now. I honestly can’t recall the last time I have felt truly and pure happiness! I wonder will I ever get that feeling again… The not so great days, fucks with my mental health a lot. My body is doing things that are beyond my control. I just wish for one day of no pain and just a day of pure bliss… I long for it actually. Chasing a feeling that I would do whatever to feel again… Hopefully one day, happiness will find me again. Keep fighting!
I so resonate with this mantra right now! I’ve been cutting some cords for some time. I know that by doing so, is my form of healing from the past and those past influences in my life. I never regret, yet I never forget the lessons I’ve learned from that time in my life! So I release everything and everyone who doesn’t deserve me nor my energy.
[ID: digital drawing on a muted blue background of a yellow keith haring style dancer in a simplified electric wheelchair one hand on the joystick the other up in the air, one leg kicking up as well /id]
Sunny bus selfie. Yesterday as I boarded there were already two strollers in the priority zone (there are two on Vancouver buses accommodating one wheelchair user and one stroller at a time - better than most cities).
The bus driver obviously had to ask them to move because wheelchair users have priority (strollers are supposed to be folded up at this point). Of course the ladies didn’t want to remove their toddlers and fold up their strollers so they made it awkward for everyone but the worst part of it was for me - everyone involved referred to ME as ‘the wheelchair’. I am a damn person.
They all also spoke as if I wasn’t even there (which not surprising given that I’m referred to as an object). And here’s the thing - I know it could have been far far worse - in Britain for example there’s a stand off between wheelchair users and parents with pushchairs (strollers) even though the Supreme Court has actually ruled in wheelchair user’s favor (of course! We don’t have a choice in the space we take up and our need for that space is fundamental to our existence in the community).
So, I know it could have been far worse but it just really sucks being spoken about in this way and never TO. The lady decided she could share my space and didn’t even ask me if I was okay with this. Neither of the mothers looked at me once. You know how that makes me feel? Not just that they like to think I don’t exist but that they’d rather I didn’t exist. That I’m an annoying inconvenience in THEIR day, not the other way around.
I had different problems with using the bus before I used a wheelchair and to be honest they were worse but I just implore everyone to think about how you talk about wheelchair users and just address us! Talk to us like any other human being. We are people and we deserve your decency and humanity.
[image description: I’m turned to face the camera, sitting in my manual wheelchair on what appears to be a pier/look out with a futuristic cityscape behind. I’m relaxed, squinting and there’s harsh shadows because it’s a very sunny, very blue skied day]
On a Roll Episode 2! Or is it technically 1.5 since it’s sort of just a follow up to Episode 1?!? Well, you decide!
I’m so excited for this wee adventure program of mine. This episode is a bit different to what I plan for in the future (hopefully there’ll be more talking and less gratuitous scenery). It’s still early days for this little video maker though, so I welcome any and all feedback ^_^
My newest youtube video is up! Snacksidents:My version of a food adventure.
I had so much fun making this one, for obvious reasons. I swear I will get less awkward soon!
Features Lucky’s Doughnut’s limited edition Sakura Doughnut… It was the best doughnut of my life so far. It’s over now and just thinking about that brings a little tear to my eye *sniff*.
Click the youtube link for a better description than this, closed captions and 1080HD viewing. Optimized for headphones!
[thumbnail image description: a composite of Cherry blissfully biting into a beautiful looking doughnut with their eyes closed. Over-layed is text with the title: Snacksidents Sakura Doughnut in a peaceful blue-green with a picture of the really cute pink box the doughnut came in. The box is bright pink, says Luckys and has cartoon cherry blossom flowers. In the background of the composite is a tray of Lucky’s famous fritters]
I’ve been busy starting a new YouTube channel (more on that later!). Essentially, a large part of it is wanting to share my experience of the world but also to try and normalize disability! ( https://m.youtube.com/channel/UCnETew92-OPnj4w2S-03a0g)
Which brings me on to my point! I started a new tag! #DisabilityIsNormal I’m going to be using it on YouTube and all platforms I can get my grubby mitts on. Disabled friends, feel free to tag your photos, posts, videos, everything of you doing normal things, just the same as everyone else! Let’s normalize disability together. Let’s show the world we exist, from our own perspective, and we are people just like everyone else! Take up space in the world with me! Let’s make everyone else start to acknowledge that we exist and our experiences are real and valid.
