Disability, Illness, and Capitalism

[@ShannonQ]

I appreciate you inviting me! Thank you so much for the wonderful conversation!!!

[@BriefBrainSnacks]

Shannon Q it was absolutely my pleasure. Thank you for dedicating the time to be on the stream. Loved the conversation!

[@meredithwhite5790]

The channel Non Compete recently did a video on his disability as well. It also touches on invisible illnesses. I liked the point you made on communicating in simple language. My background is in public health and in grad school I took a course on health communications. At one point we learned about writing in plain English (4th-6th grade reading level). It is challenging with some topics, but it does make important information more accessible.

[@BriefBrainSnacks]

Meredith White thank you. I sincerely believe that if one has something important to say, yet no one can understand because “big” words are being used, then there’s no point of saying it. I also try to use a “big” word and define it so that people’s vocabulary can expand. I don’t always succeed but I do try! 🙂

[@yowut2386]

I’m a 44yr old male with PPMS very progressive and my days are tough and it’s a issue for me to get out but when I do it’s very frustrating to deal with society. I was DX 6 years ago but I’ve had MS issues ignored by Drs. For 15 20 years now I’m a crippled man. So depressing but I have so much love and support and I keep grinding. This is a new channel for me. I’m a fan of Shannon’s now I’m a fan of yours. Thank you.

[@BriefBrainSnacks]

Yo! WUT? I’m sorry that it took so long to know what was happening to your body. I was 16 when symptoms first began, but doctors didn’t know what was wrong until the double vision started in my early 20s. I’m happy to read that you have a strong support system. That’s so important and care givers need to be recognized as they tend to be the silent army fighting for the people they love. Don’t be a stranger. Please keep me updated on how you’re doing.

[@Thunderball.Mcgillicutty]

Thank you ladies for talking about a very important topic.

[@torrentialrage]

Woah, her perspective on advertising was paradigm shifting for you.

[@apetivist]

This is an incredibly important video.

[@BriefBrainSnacks]

Thanks for the compliment! It was a wonderful discussion and I'm so thankful to the audience and especially Shannon for joining me

[@kittye8340]

I live in the U.S. my mother has M.S. I am experiencing M.S symptoms but because I do not have the brain lesions I have not been diagnosed. Doctors are sure it is neurological but haven't told me for sure. I feel sick all the time but cannot get SSI because I cannot prove without a diagnosis that I need it. I feel so useless and suicidal because I know I can't keep a job schedule and will keep getting fired. I am in a terrible place in my life and cannot find value in living

[@BriefBrainSnacks]

Kitty E I am so sorry that this is happening to you. I don’t have a solution regarding SSI, but I do know that you are valuable and will always be valuable. I’ve been where you are, and it’s a lonely place. I often fluctuate between being in that place, & not being in that place. It’s a constant battle. I remind myself that: no matter what, the labor I produce will be exploited under a capitalist system. This isn’t a problem with me, or with anyone else, but a problem with the belief people hold that such an exploitative system is the only one that works. This, of course, isn’t true. No one can ever even define what they mean by “works”. Further, we’re human, so we can think of something better. We went to the moon for Pete’s sake! In undergrad I double majored in psychology and anthropology. What I learned in anthropology is that even the Neanderthals took care of their sick and injured. If they can do it, we certainly can do it, too. We have it in us, but society has morphed into such an ugly creature. I want to help change that society. That’s what I live for, as I don’t want others to suffer as we do today. I think having these conversations are part of that process and by adding what you’re dealing with, being honest about the troubles you face, it is contributing to making the world a better place. Thank you, & continue speaking to others about the troubles you face. People need to know.

[@kittye8340]

@@BriefBrainSnacks thank you, it's just really difficult because even the people around me act like that sometimes. Part of it is my family is religious and deeply conservative. They hold the view that if you're not working you're lazy and that SSI or SSDI are just free money for lazy people

[@DavidLindes]

1:34:12 - Shannon, if you see this: I strongly recommend that you check out the Roger Waters album "Amused to Death". Lots of subtle stuff in there, that takes a while to take in, but... it's spot-on in line with what you're saying right here........ Here's the clincher [spoiler warning, in case you'd rather listen to the album, or at least the eponymous song]: [various stuff about our own self-destruction, and then...] "... somewhere out there in the stars A keen-eyed look-out Spied a flickering light Our last hurrah And when they found our shadows Grouped around the TV sets They ran down every lead They repeated every test They checked out all the data on their lists And then the alien anthropologists Admitted they were still perplexed But on eliminating every other reason For our sad demise They logged the only explanation left This species has amused itself to death" I think it's global, to a significant degree, but especially prevalent in the United States. What some future (alien or otherwise) anthropologists will think of us......... it'll be perplexing indeed, I hope.

[@BernicePanders]

1:38:10 - DITTO, GIRL!! I've been trapped in a toxic Michigan HUD apt for over a decade & the lack of doctors, medicine, transportation & the extra $200 I need on top of my meager disability to afford to barely survive is literally killing me. I've always dreamed of living out west, but after heart failure due to severe lifelong stress & developing 2 terminal illnesses, I had changed my dreams to simply one goal: get a vehicle big enough to sleep in, pack up just what I need to live, and get my ass to CANADA, so I can either afford to survive & actually have real doctors improve my quality of life, or else get assisted suicide after my DNR forms were blatantly ignored TWICE, by the same hospitals here, so I can stop suffering untold horrors... Guess it's not going to be assisted after all, or in a place where anyone cares enough to make sure it's not alone or botched... America, where the best alot of us can hope for now is to die in our sleep...

[@DavidLindes]

59:10/59:18 - it's so refreshing to hear someone else who feels the same way I do about advertising. I _loathe_ it. So it was really hard to hear Shannon's response to this. I'm not currently on patreon, but I've been meaning to get on there... and I'm adding you to the list of people who'll get some funds from me when I do, because... yeah. I don't know if or to what degree Shannon is correct about how much your stuff will get shown/seen based on that decision-making, but... I'd love to see more creators refuse to do ads. [Even while I never see them, because I pay for KZbin Premium specifically to avoid them.]

[@DavidLindes]

Going further, re 1:03:50 - while Shannon does have a certain point here, and I'm glad she's doing that in a way, I just have to wonder: If by "exposing the rhetoric", and contravening it, one also brings a wider audience to _them_ as well, what's the net benefit? Probably hard to measure, but certainly worth thinking about. If what Shannon says at 1:04:04 is true, but your message stays pure... is it worth it? I don't know. But I think it might be. You're definitely asking the right question at 1:04:32. What the right answer is, I don't know. However, if you opt to opt out of the system, you have my support! 1:09:54 - not only are you making sense, but it's spot on, and a message that needs to be understood by more people! Keep telling it, keep finding ways to communicate it... it takes time, but folks will get it. As a side note: have you looked at free software options for video editing? I haven't actually tried using them, so I can't speak to whether they're good enough to replace whatever you're paying a subscription for (I presume Adobe?), but... worth thinking about? I know I've become pretty anti-Adobe over the years. It has costs, but feels ethically worth it... to me. YMMV.

[@DavidLindes]

I wonder if it helps or hurts (or both?) for me to say: _I_ value you for creating videos like this, and generally about the topic of invisible disabilities. The way I hope it helps: as recognition of influence you're having on the world that has a positive impact. The way I worry that it might hurt: that it potentially makes the value proposition dependent upon you continuing to create video content. Which... I suppose as someone who doesn't otherwise interact with you, has a certain reality to it... and yet, in concept, I don't think it's limited that way. Now, I wonder if I can tell myself that latter part, about my own value... :-o

[@BernicePanders]

I wish I could get my story out there via podcast. I've been vlogging for a decade on my channel, but no matter how many 'youtuber tips' I've applied & tried, I haven't come close to my 500 subs goal, and haven't gotten any linear, relatable or clear story lines out on video. I tend to forget what I already said, especially since half my vlogs don't get uploaded, and with nobody asking questions, I just ramble & go on tangents. I also can't be on camera for 2 years now, as having all my teeth extracted over that time has made me look like a freak (my mother & family in general, aside from the cruel, judgemental internet in general, are extremely vain bout how others see them) & combined with another illness causing me to lose eyebrows & lashes, I'm just too self-conscious. For about 8yrs, since my first of 2 massive stress heart failures hit at age 27, I've wanted nothing more than to get my story out there (when I was younger, it was memoirs I dreamed of, but my creativity has gone down the toilet since about 15yrs ago) & vlogging or telling my stories while behind camera, are just the easiest way. I've also wanted to get rid of everything I don't really NEED, hopefully acquire a moped or vehicle, and GTFO of this shithole state so I can go where I'm treated like a human being with ANY VALUE. Every day I get further & further away from getting to experience what it's like to have the freedom of leaving my lab rat cage & just GOING SOMEWHERE, other than the once monthly Dr appts & once a week Walmart trips, the extent to what my capable family will inconvenience themselves to let me go somewhere! The fact that I was the first born in my family in my generation, the fact I was the first one to need a vehicle out of my dozen siblings & cousins & it was obvious by age 12 that I was going to be disabled & need help getting transportation & would never be able to get it on my own, didn't stop my parents from doing fuck all to plan for my future or my well-being! My alcoholic sister & drug addicted cousins got all the financial help they needed, multiple times, to get vehicles. My two 30+ year-old step-siblings (my dad's 2nd wife's kids) are living rent-free under my dad's roof, with large disposable incomes, who have all the best tech & game consoles. Meanwhile, I've spent a decade selling all my stuff, cutting all non-survival-need costs out of my $750/month disability, have no TV, no services except a prepaid phone (my only distraction) & go without half the meds & groceries I need every month, have literally nothing left that anyone will buy off me, and have had to humiliate myself begging for years. I've come within days of losing power & being evicted a dozen times in 3yrs, causing panic attacks every time I have to open a bill or call them. Still, after being the most responsible person in my family, but also the poorest & most sick/disabled by far, all I hear from my whole family is that because my bare minimum meds costs are over HALF my income, and because I pay for these life-saving meds FIRST, then have just enough left for rent & either my power or my phone, groceries, etc. that I'm being "naive & irresponsible" & straight from my dad & grandma: "If you don't start prioritizing your costs better (ie. stop paying for my meds that keep me out of the ICU) you're gonna end up on the streets! What's your choice, end up on the streets or in the hospital??" Because of course, the dozen incredibly easy, logical, NORMAL ideas I've spent over a decade coming up with where I could have easily made the extra $200/month I need to just survive if only I had 10% of the support everyone else had getting into a vehicle of any kind, are all unrealistic & selfish of me!! You know, because the NORMAL thing is for my parents & whole family to chose to ignore either my illnesses & financial problems, or just act like I don't exist at ALL, like my healthy sister, step-siblings, all cousins, and most aunts & uncles have. They're mostly conservative evangelical nutjobs who simply ignore any facts of reality that make them uncomfortable (climate change & pollution, COVID), and thus have made it clear that if I can't pray a vehicle into existence, or if god decides I'm meant to exist in this endless hell, then I better do what my sister & mom did, find some poor random strange guy somewhere out there & manipulate them into giving more of AF about me & my well-being than my own parents & family have!! Anyway, let's just say, when someone knows nothing but being a lab rat, being in constant agony, constantly having to fight & struggle to get enough money to exist one more day, having literally nothing positive to remember or look forward to, having no emotional or physical support & never once since being born unwanted & unloved, have ever felt loved or needed or valued, they not only die from sheer stress & anxiety, they existed for no reason other than to be a scapegoat for their whole healthy, well-off family... That person ends up like me. A sad, hopeless, anxiety-filled, pissed-off, broken & destroyed shell that gets filled with cynical rage & becomes a time bomb. If there were any means of ending my misery other than the one I've tried numerous times, I wouldn't have had to experience the bottomless pit of hell I've continued falling down, always getting worse & never better, making this atheist question if I actually WAS brought back against my DNR wishes both times, or if this is in fact hell... 🤕⏰💔

[@BriefBrainSnacks]

I'm sorry to see that you're clearly having a difficult life. You don't need to manipulate anyone into giving AF about you. Otherwise, what's the pleasure of being cared about when you know that the care isn't genuinely created. I doubt you would actually do this, because you don't like that some of the people you know have employed this technique. The thing we have to start realizing, and I am including me in this, is that we have to understand that we are worth being seen as people with thoughts, feelings, dreams. No less than anyone else. We must believe that we are worth more than society could ever possibly return to us. There's only one you (seriously) with your exact experiences, world views, internal life, etc. Once you're gone, it's impossible to be replaced. How could society ever compensate for this? I don't think it can. I feel you on that last point. I think, "what in the world did I do in my past life to place me in this hell"? I often joke about this. Regarding your blogging/ vlogging, I think that once you let go of whatever stupid goals this platform or any other platform thinks you should obtain, you'll be happier that way. I know that for my channel it's been relatively slow, but that works for me. If it doesn't work for you, then you know what you need to do. The only thing anyone can agree upon: make more content. Also, when I know I'm talking about something I'm likely to lose track of, I write a script. Record a few times to see if it's what you want to say. Then, if you don't like it you can always make it again. This helps me stay on the subject and you may benefit from this too. I don't know if that is what you want to read, but it's all I got.

[@BernicePanders]

@@BriefBrainSnacks Thanks for the reply. I guess my problem has always been that, unlike my family, I can't just pretend, lie, be a fake person to rope people into liking me, I'm a cynical realist who has no reason to hide anything. I've always heard about vloggers "Just be yourself, be REAL, and people will love it!" Well, not when I've literally been clinically dead & know the afterlife is BS & religion is a corrupting control device for society & a safety blanket for those afraid to die. I'm too much a realist, I saw a decade ago that the human race is a cancer on the planet & that the apathy, greed & corruption would only get worse. My ideals & expression & personality are as opposite of my family as I could possibly be, and I think I will always be alone because nobody else wants to acknowledge the brutal reality of the world, American politics, the future of our only planet, etc. I've been vlogging as often as my symptoms, lack of decent tech hardware & lack of any wifi to upload or stream on, would allow, for 10yrs. I know it's not nearly frequent enough, but I've been trying to branch out & do less serious, depressing topics, but it's like carrying a snowball through a volcano, trying to get views or subs. I never wanted to be 'a successful KZbinr', never intended to get more than maybe at the very most 10k subs, because I'm sure the stress would only make it all worse. Once I had my second NDE & massive heart failure, I was just determined to get my story out there, leave something behind so I'm not forgotten & didn't go thru all this 20+ years of hell for nothing. In a distant second place is my goal to hopefully get just enough support to be able to keep my lights on & my urgently needed meds in stock. But I also despise ads, so I never monetized my channel, and still don't think I ever would. I guess I naively thought that providing ad-free content that's more relatable than most big vloggers, being 100% genuine & telling my story would be enough to draw the viewers. But then, I've had the worst luck in literally every aspect of my life since I was a kid, so I guess it's not surprising I'd get nowhere near any of my hopes or dreams... Sorry to ramble, I'm going thru a really hard time financially & don't think I can make it thru the month, let alone another horrific Michigan winter, my symptoms getting 100x worse... 😩

[@BriefBrainSnacks]

Bernice Panders if you monetize some of your videos, KZbin will circulate them with the help of their algorithm. They present things they can make money from, & that’s a big hurdle to cross just to get to be able to monetize. Since you said you’re able to do so, monetize your favorite vlog and see how that performs. You may start getting the visibility you’re seeking. There are all sorts of people with various personalities. Someone will adore your content, but they need to be able to find you. Kay?

[@BernicePanders]

@@BriefBrainSnacks Did I say I could monetize it? Sorry if I implied that, I honestly don't even know how, I just started my channel with it off because I didn't want ads in my vids. I never thought I could meet the insane requirements for monetizing anyway, especially now. I don't think I have enough subs or traffic, I only have 2 or 3 vids with 5-15k views...

[@BriefBrainSnacks]

Bernice Panders there are metrics you have to acquire in order to monetize your channel. You’ll need at least 1000 subs and 4000 viewing hours across your entire channel within the last 12 months. For me, it was more difficult to obtain the hours than the subs. I don’t think KZbin tricks are that effective. I don’t know all of them, but a fraction I’ve tried didn’t result in any changes to my channel. The only tip there is that is effective is to make as much content that is lengthy as possible. That’s it. I wasnt, and am still not, willing to bust my ass trying to get more content. Most of my produced videos are heavily researched and take weeks to make. So, I do what I can, when I can. Vlogging is a bit easier than what I normally do so you can probably get more content uploaded. I dunno. If it’s your goal, than that’s about the only thing that’ll work. Though, It’s not a particularly easy barrier to cross.

[@DavidLindes]

1:37:37 - I cling to the hope that there _is_ a way, or rather, there _are_ ways... It's slow going, though, for sure. 1:37:52 - ouch. :-/ I feel ya, though... I don't know how much of this is actual reality and how much is mental road blocks I set for myself, but I feel similarly trapped here. :-/ 1:38:04 - I don't know whether or not to hope for that loophole to become relevant. :-o P.S. Greta stream, all around! And sorry for the comment spam... hopefully you don't mind too much. Too many thoughts inspired!

[@nathanjasper512]

I missed it? I must self flagellate.

[@BriefBrainSnacks]

Nathan Jasper lol, please don’t. 😂