This is the introductory episode for the new SpoonieVR podcast!
You can also listen to this on YouTube with CC here: youtu.be/8T7zYznjPJM
“Spoon Theory”: butyoudontlooksick.com/category/the-spoon-theory/
SpoonieVR blog: spoonievr.com/
SpoonieVR Twitter: twitter.com/SpoonieVR
My blog: insomniadoodles.com/
Mikey Geiger on Spotify: open.spotify.com/artist/4v8uHQhTE…SxQhGGT249XjCoXQ
This podcast is also available on Spotify: open.spotify.com/show/4z3IELbOA5K9obd0FxONOi
Hello and welcome to the SpoonieVR podcast!
From increasing physical activity to alleviating social isolation, Virtual Reality can truly be a therapeutic tool for the chronically ill, disabled, or anyone who finds themselves homebound for any number of reasons. My name is Sunny, but my handle pretty much everywhere online and in VR is InsomniaDoodles, and I am the creator of the SpoonieVR blog, which features and reviews Virtual Reality games, experiences, and services from a spoonie’s perspective.
If you aren’t already familiar with the term “Spoonie”, let me enlighten you with the cliffsnotes version of where that comes from. The concept of spoons as a symbol for energy was first introduced by Christine Miserandino on butyoudontlooksick.com. She was trying to explain to her friend what it is like to live with limited energy due to her chronic illness, Lupus. Needing some kind of tangible symbol, she grabbed a handful of spoons and said “this is your energy”. You wake up each day with a random number of spoons. You might wake up and find you have five spoons, or ten. Some days, you may wake up with no spoons at all. Simply getting out of bed can take a spoon. Other tasks might take two spoons or more. Even doing things you enjoy cost spoons. At some point, you’re going to completely run out of spoons, so you have to make choices about what you’re able to do before you run out, such as deciding whether to use your energy to do the dishes, or get some exercise, something most healthy people never even have to consider. This concept was dubbed “Spoon Theory” and became very popular among the chronic illness, neurodivergent, and disability communities, and many folks within those communities refer to themselves as “spoonies”.
Now that you’re in the loop about the whole spoonie thing, I can introduce you to this podcast idea I’ve got. I am first and foremost a patient advocate and activist for folks living with rare diseases, chronic illness, and invisible disabilities, but I discovered a passion for VR in October of 2018, when I got my very first VR headset, a standalone device known as the Oculus Quest. I wasn’t entirely sure if VR would work for me, considering my low vision issues, which I’ll explain more here in a moment, but I had been watching a bunch of videos showing the game Beat Saber, and I just HAD to try it for myself. I convinced myself this would be an investment in my physical health, because Beat Saber looked like it could be quite the workout, and hey- even sick people need to exercise when we can. So, I bought the headset, and was absolutely blown away by how truly incredible VR was. Luckily, my vision issues didn’t severely impact my ability to play Beat Saber, and I was immediately hooked. I decided to see what else VR had to offer, and I discovered something I had never even considered up until that point- social VR. This revelation truly changed my life. My low vision issues and other health problems cause me to be homebound quite frequently, so my social life is fairly limited. Now, with social VR applications and games that incorporate social features in multiplayer, I can hang out with friends and have an awesome time from the comfort of my own home, or bed. Virtual Reality has alleviated the social isolation I had been struggling with for so long, and as someone who has a compromised immune system, I can’t even BEGIN to tell you how much this has helped me through the pandemic.
I really, genuinely think virtual reality can be a crucial tool for anyone who finds themselves homebound for whatever reason, but my main focus when I created SpoonieVR.com was to support accessibility in VR for folks living with whatever unique limitations they might have. In my case, I was born with a rare birth defect called “Septo-Optic Dysplasia”. That caused Optic Nerve Hypoplasia, which caused me to be blind in both peripherals and have low vision overall, and Panhypopituitarism, which is a pituitary disorder that can cause debilitating symptoms which severely limit what I am able to do when they arise. I could record an entire podcast episode just explaining the complicated details of my diagnoses, but I’m not going to get into that here. If you want to learn more about that, you can check out my blog, insomniadoodles.com, where I’ve explained it in detail. Long story short, I frequently find myself low on spoons, and my low vision issues give me a firsthand appreciation for the necessity of accessibility tools.
For this podcast, my intentions are to have candid conversational interviews with developers of VR games, experiences, and services in the context of what those developers are doing to improve accessibility in their content or otherwise benefit folks within the Spoonie community through services such as mental health and physical therapy or experiences which aim to raise awareness. We’ll discuss some of the behind the scenes efforts these developers are making to bring you their content, and what they can do to make them even better. My individual limitations are not nearly as severe as many of the folks I advocate for, but I will do my absolute best to bring to these developers’ attention the need for accessibility tools their content may be lacking.
Though I try my best to educate myself as much as possible, I am not an expert in the field of disabilities or accessibility in general, so my knowledge of the needs everybody else may have is pretty limited. In order to give folks a chance to share what tools they need developers to include to make their content accessible for their unique individual needs, I’ll make a post on Twitter @SpoonieVR sharing who I’ve got lined up for an interview ahead of time and give you a chance to ask questions and offer your input, which I’ll share with my guests on the show.
I want to offer you insight into what developers are doing and introduce you to new tools you might not otherwise know about, and I’ll let you know via social media and the SpoonieVR blog when new episodes become available, but please understand that I am a Spoonie myself, and I’ve got to put my health first so that I can keep doing the advocacy work I love, so there may be long stretches of time between new episodes. Producing a podcast takes a LOT more effort than you might think, so I’ll have to pace myself and I hope you’ll be patient with me.
If you’re a VR developer and would like to share what you’re doing on the show, please feel free to reach out via email at firstname.lastname@example.org. If anyone listening wants to give feedback or recommend suggestions, or if you just want to say hi, please feel free to send me an email or reach out on social media! I would love to hear from you! You can find all my social media and other important links in the description of this episode.
Oh, before I end this episode, I want to let you know about a peer support group I run. It’s called “VR Spoonies” and we meet every Sunday at 7pm EST on AltspaceVR. We’ve been meeting every week for almost two years now, and the community that has grown around this group has become a really wonderful close-knit family of people who truly understand what it’s like to have to count your spoons. This group started in VR, but we also have a discord and facebook group you can join. You can find all the details by visiting spoonievr.com/support.
Thanks so much for listening to this introductory episode of the SpoonieVR podcast! Shoutout to Mikey Gieger for his song “Inspired Iguana”, which is the intro and outro for this program. You can find him on Spotify. Check him out, good stuff.
Until next time, take care and I’m sending spoons your way!