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kiki & ayano
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« on: July 21, 2023, 12:38:16 am »

something i've been thinking about a lot recently as my adventure fighting the medical system for the past 2 years for help with my disabilities seemingly draws to a close (i have medication and physical therapy lined up, woohoo!) is how much disability has impeded my ability to make the things i want to make the past few years. for context, i have POTS which stands for postural orthostatic tachycardia syndrome, and a couple other things i won't list here. a couple of my more debilitating symptoms include intolerance to being upright, which means sometimes i cannot sit up at my computer for long periods of time, and brainfog, which just makes it... difficult to read, write, process anything. sometimes i want to work on a page for my site but my brain is too fogged up to parse a wall of text, or i'm just too unwell to sit at my keyboard and type. my chronic pain problems certainly don't help! it's always been pretty demoralizing because i KNOW i have passion, i KNOW there's so many things i could make, i just work at a very slow pace because of the intermittent way in which i have to work on my creative projects. it even makes me worry that other people look down on me and think i don't care about my own art, which i do! and hopefully some of this changes now that i'm just beginning to get proper help with managing my chronic illness.

on the other hand, web development and web revival has added so much to my disabled life - making a website was an out of pocket, impulse decision for us at first when ayano just decided to throw herself headfirst into a pokemon fansite one day because why not, but since then it's blossomed into a whole new hobby. like, yeah, we work slow, but we also love it whenever we're capable, and i think we feel more pride finishing webpages than any other form of art. the indie web, neocities, etc, has also reminded us to slow down and take a breather from social media, be more human, and stop doomscrolling, because when you're a disabled homebody and the computer is your lifeblood, it can be reaaallyyy easy to drown in aimless harmful-to-self internet activity. neocities is a creative outlet to get away from all that and give us something to be proud of.

point is, i feel like i'm constantly going between feelings of inadequacy, comparing myself to fellow webmasters, and wishing i could consistently do more, but also experiencing so much joy because of the indie web and being genuinely passionate about it as an art form. it's a complex relationship but a worthwhile one! i also post this in a positive sense, being disabled is not a tragedy, just a fact of my life and i have interest in talking about that part of my life experience. overall i love programming my silly little HTML/CSS/JS things quite a lot, this is not a cry for help or anything lol

i'd imagine there's likely other users on this forum who are disabled in some form and i was wondering how making websites and whatnot interacts with your disability, or if it doesn't at all! and if it impedes your ability to create, how do you deal with it? is there anything you're really proud of creating in particular despite the barriers to making it? just anything else on the subject you'd like to share? the possibilities are endless :ok: <- this is my first time using one of these emojis. they're so silly i love them

- kiki

edit: noticed a typo right after posting ; _ ; lmao
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pinkvampyr
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« Reply #1 on: July 21, 2023, 01:32:37 am »

This is something I've been thinking about recently. It has been a long time since I really poured myself into something this much. I was definitely the doomscrolling type, and executive functioning issues make it very difficult to get up the drive to do anything. Not to mention having such low self esteem from feeling like my disability has made me fail at everything I've ever tried, that it makes me bad at everything. I end up giving up on most things when I feel like I'm not making progress as quickly as I want, so for me to be able to accomplish not only learning HTML and CSS, and then make my own website and actually liking it....its unprecedented for me.

I don't know what this means. Maybe it means I'm healing? Maybe it means I can really succeed at something if I try after all? Or maybe I've just finally found the thing I'm good at. Either way I'm proud of myself for the first time in a hell of a long time. I'm sure the insecurity will inevitably kick in when I find something really really hard but for now I'm just riding the high. I'm really proud of myself!
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kiki & ayano
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« Reply #2 on: July 21, 2023, 02:00:31 am »

Not to mention having such low self esteem from feeling like my disability has made me fail at everything I've ever tried, that it makes me bad at everything. I end up giving up on most things when I feel like I'm not making progress as quickly as I want, so for me to be able to accomplish not only learning HTML and CSS, and then make my own website and actually liking it....its unprecedented for me.

i really resonated with your entire response here, but this in particular!! i feel like now whenever i start anything new, i expect to fail because of failing in the past and that practically decides my fate because the expectation to fail makes me give up extremely quickly. maintaining blue moon falls for nearly 2 years is completely unprecedented for us. it's actually really surreal. like, we've done so many digital art projects over the years that have quickly crashed and burned but somehow this is the thing that's working out and despite everything, brings us joy? that's wild.

Either way I'm proud of myself for the first time in a hell of a long time. I'm sure the insecurity will inevitably kick in when I find something really really hard but for now I'm just riding the high. I'm really proud of myself!

i'm proud of you as well by the way, that's awesome :D i hope the high continues!

- kiki
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pinkvampyr
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« Reply #3 on: July 21, 2023, 03:49:53 am »

a
i really resonated with your entire response here, but this in particular!! i feel like now whenever i start anything new, i expect to fail because of failing in the past and that practically decides my fate because the expectation to fail makes me give up extremely quickly. maintaining blue moon falls for nearly 2 years is completely unprecedented for us. it's actually really surreal. like, we've done so many digital art projects over the years that have quickly crashed and burned but somehow this is the thing that's working out and despite everything, brings us joy? that's wild.

i'm proud of you as well by the way, that's awesome :D i hope the high continues!

- kiki

aww thanks im proud of you too !! :transport:
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choiyoona
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« Reply #4 on: July 21, 2023, 06:28:25 am »

I absolutely struggle with this as a webmaster with chronic pain - most days I do little to nothing for my website because I'm just tooo tired to think about coding and how to parse it all. It's nice when I have a good day and inspiration to work on my site!
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« Reply #5 on: July 21, 2023, 09:36:33 am »

I can relate a bit to you*.

I think we often don't get to see behind the website (even if there might be a lot of personal info on there) and see their real life issues or how intense they can be, so it's possible we feel inferior to them. Either because we wish we here healthy like them, or because we think they are handling their illnesses or disability better than we are. Because how come they are also ill or disabled, but have this cool site? :omg:
I always try to reframe my thoughts to instead think that if they can do it, I can do it too. Even if it takes me longer, with more breaks, easier explanations, more examples, more reliance on docs etc.:cheerR: it's important to recognize that by pushing ourselves to do more beyond a certain limit, or constantly, that we will usually not put out better work consistently, but mediocre work before we stop altogether because we burn out. And that would suck.

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* From October 2022 to about February 2023, I had POTS-like symptoms as a form of post-Covid damage and it wasn't clear if the symptoms were gonna stay and become full on POTS or if they would slowly go away. I also had intense heart issues that landed me in the hospital in that time, also due to Covid. I've recovered from those two since Feb (also the point when I started putting in the most work into my neocities' sites), but I am still on a very low dose of beta blockers.
I also have some emerging health issues that I really need to take care of now and requested someone to help me with that yesterday, actually, because I can't make the appointments on my own (overwhelmed, low energy, scared of the commitment, postponing it, forgetting..).
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kiki & ayano
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« Reply #6 on: July 21, 2023, 04:08:33 pm »

I always try to reframe my thoughts to instead think that if they can do it, I can do it too. Even if it takes me longer, with more breaks, easier explanations, more examples, more reliance on docs etc.:cheerR: it's important to recognize that by pushing ourselves to do more beyond a certain limit, or constantly, that we will usually not put out better work consistently, but mediocre work before we stop altogether because we burn out. And that would suck.

for sure! i think it's also important to remember that it's simply not a race, all of us are doing this in our free time for the love of it and it's okay to take it slow or take breaks instead of constantly pushing. like you said, pushing too hard past our limits doesn't cause better work, just burnout.

also glad to hear that you've mostly recovered from your stuff, as someone who's had POTS since way before the pandemic, it's been very unnerving watching people around me suddenly obtain my sort of symptoms and struggle so much. i don't wish this on anyone!

- kiki
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« Reply #7 on: July 21, 2023, 09:02:57 pm »

Making websites as a therapy? Interesting thought. Slow progress possible. I like one thing about making websites, that's that you can leave your code and start on another day right where you left of, because results can be directly seen in the browser. Unlike games programming for example, which requires long sessions sometimes to get certain logical connections done, because it would be difficult to get back where the code was left. Making websites is rather developer-friendly in that regard.

My cousin has only one hand to work with. The other hand is crippled since he was 1 year old. That doesn't stop him from working at a computer, typing with 5 fingers, using the crippled hand as some kind of "hook" to hit CTRL for key combos. He won't be winning any speed typing contests, but whatever, who cares! At least he doesn't and did get on with his limitations very well.

One day, my back will probably fall off and until then, I want to try to build some kind of high-legged frame, supporting an LCD monitor, which would enable me to use a computer in a lying position in bed. I don't know if that would be practical at all, but all I can say is that using my computer keeps me sharp and I want to continue with that, even if sitting for a long time would be impossible.
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« Reply #8 on: July 22, 2023, 09:48:26 am »

yeah, and it's kinda frustrating sometimes (but not really anyone's fault) cause I see all these things like. oh it's really, really easy to make your own website!! don't worry!!! while I am sitting here with my nerve problems and brain fog and executive dysfunction having a very hard time setting up even basic things.

my nerve issues effect my hands (as well as other things, but I don't use those in making websites) and that's a big thing. i can't do all the things I want to, and I want to do a lot of things, and so it's this sort of weird balance of being careful which activities I do, because I can only do so many without pain and stuff. I am thinking about making some sort of schedule where I do like. 1 of the three most important ones a day, and then chill for the rest of the day. but then things like work and school also contribute to it, so i have to take those into account too.

i guess sometimes it's just. you will be slower and have a harder time than others and that's ok. it's not a race even though my brain really thinks it is one for some reason. but it sucks that it seems like everyone else has there own shiny little websites already and I am struggling to understand how html even works and having a hard time finding a time when using a computer long enough to make progress on things doesn't kill my hands.

not to mention that any sort of social interaction brings with it new social norms to not understand, and new communities to feel alienated and excluded from. sometimes it feels like you don't belong anywhere, no matter how hard you try.

the web is a beautiful place that makes me very excited, but it's hard to get to the place you want to, and it's frustrating when you could be doing more and you know it but you can't because of things out of your control.
« Last Edit: July 22, 2023, 09:50:46 am by glitterpigeon » Logged




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kiki & ayano
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« Reply #9 on: July 23, 2023, 02:50:01 pm »

my nerve issues effect my hands (as well as other things, but I don't use those in making websites) and that's a big thing. i can't do all the things I want to, and I want to do a lot of things, and so it's this sort of weird balance of being careful which activities I do, because I can only do so many without pain and stuff. I am thinking about making some sort of schedule where I do like. 1 of the three most important ones a day, and then chill for the rest of the day. but then things like work and school also contribute to it, so i have to take those into account too.

i understand this feeling, i have chronic pain issues with my arms and typing can be painful after a certain period of time, and i don't even think i have it as bad as some. it's frustrating too because you may type for a long time and not get very far because you're actively learning a new concept while you work which may require re-codes and whatnot and by the time you understand the concept, you're in too much pain to actually apply it. you're right that it's not a race though and i think whatever you're doing is great, no matter how relatively slow. i'm sure you can get to where you want to be eventually!

- ayano
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« Reply #10 on: July 23, 2023, 03:39:06 pm »

I've been making websites since I was 10 (I'm in my 30s now). I'm autistic and have a speech impediment, so website-making has always been an outlet for me to express myself in a way that's hard to do in real life. My early experiences with making websites and learning HTML and Photoshop on my own have also eventually led me to working as a graphic and web designer today. So overall I'm very thankful for my website-making experiences for all the skills and opportunities it has given me.
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« Reply #11 on: July 25, 2023, 05:42:44 am »

coming back to this to add a sort of thing like. the tangible world is very inaccessible in a lot of ways for a lot of people, and I always saw the online world as a way to have a space you can easiliy make much more accessible, even though the internet as a whole still has most of the problems the rest of the world has, it can feel like you have more power there than in the tangible world. and there's a lot that could be said about this and I am not going to write that all right now.

and I am really struggling to think about how to artciulate this, but like. I feel like one aspaect of this is how the internet kind of encourages me to rethink some of the ways I think about things? and how some of the things I struggle with are sort of made-up problems to an extent. thats a whole other complicated issue, but these are sort of new spaces we are making, allways and forever, (even though a lot of web revival stuff is very nostalgic and past-focused, I never liked that very much. we need to create the future, not go back to the past) and we can question the things that make the world less accescible but that don't benefit us at all and are pretty easy to just. stop doing.

idk. was thinking about this specifically with having a learning disability i writtend expression and how that makes the very writting centred internet hard sometiems and also how language was made up, but how inttense some people can be about doing it in the right way. and how even with the most careful edditing I usually have something slip through, but like. it's kind of silly that I stress so much about it. without the wiggly red underlines and the people who made fun of me in highschool, it's just some silly noises that miraculously hold meaning, thats pretty cool.

can people understand what I am saying? if yes, does it matter how I say it? sometimes (like right now) I sort of leave some of that in, when my brain jumbles words up or can't speel them. to liek try to normalise it a little bit maybe. idk where I am going with this. spellchesk you are very useful and it's good to edit things and stuff but people are soo mean about things like this maybe they deserve to see a bunch of mispelled words some times. I hope this made sense.

(also I find that I mess things up in similar ways each time, and thats kind of interesting. it makes me want to look at it a bunch to try to find some sort of pattern)


also editing this to add how this has always made me feel like I had a slightly different set of experiecnes in especially neurodivergent spaces? especially autisitc people talking about how writing is where they an best express themselves, that it's so much more fluid and confident and natural than other forms of comuninatcion. and good for them, but it's a bit weird for me since writing is hard. it's really hard and unnatural, and I love doing it, but it takes soo much enegery. words just don't make complete sense in my brain. and it's then werid spending so much time in places where writing is the main form of comunication. this isn't going anywhere, I am just thinking about it.
« Last Edit: July 25, 2023, 05:50:28 am by glitterpigeon » Logged




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« Reply #12 on: July 27, 2023, 11:45:09 am »

I deal with eye strain every once in a while and have chronic pain. Neither of these substantially affected my computer usage until I started my job. Now that I look at a screen at least 8 hours a day, I need to be on top of my eye health. If I don't take sufficient breaks, I will be dealing with pain for at least a week if not more (as happened recently).

I find myself locked away from most of my hobbies: Gaming, engaging with communities, and as of recent website building. After work I force myself to stay away from any screens, but even most of my offline activities like reading involve heavy usage of my eyes. I don't have a solution to this yet, but I am getting increasingly frustrated that the things I love doing also hurt me. There's only so many podcasts I can listen to to fill the void.

also editing this to add how this has always made me feel like I had a slightly different set of experiecnes in especially neurodivergent spaces? especially autisitc people talking about how writing is where they an best express themselves, that it's so much more fluid and confident and natural than other forms of comuninatcion. and good for them, but it's a bit weird for me since writing is hard. it's really hard and unnatural, and I love doing it, but it takes soo much enegery. words just don't make complete sense in my brain. and it's then werid spending so much time in places where writing is the main form of comunication. this isn't going anywhere, I am just thinking about it.

Would using something like a text-to-speech converter help with conveying what's on your mind? It could help with drafting content for your website for instance.
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« Reply #13 on: July 27, 2023, 12:55:03 pm »

Would using something like a text-to-speech converter help with conveying what's on your mind? It could help with drafting content for your website for instance.

yes I often do use them (also helps when I can't use my hands much) theres some issues, it's frustrating when they can't seem to get the words I am saying correctly, or when they pick up my tics (which. to be fair I don't get vocal ones very often, but it happens sometimes), or when I am talking about something like, more technical? then it doesn't seem to always know the words I am saying. most of the ones I have seen also just. don't let you swear. they censor it, which I really fucking hate. but yeah. some amount of writing is required to use one anyways so sometimes I get tired and just give up. but they are a very useful tool!
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« Reply #14 on: July 30, 2023, 12:17:10 am »

something i've been thinking about a lot recently as my adventure fighting the medical system for the past 2 years for help with my disabilities seemingly draws to a close (i have medication and physical therapy lined up, woohoo!) is how much disability has impeded my ability to make the things i want to make the past few years. for context, i have POTS which stands for postural orthostatic tachycardia syndrome, and a couple other things i won't list here. a couple of my more debilitating symptoms include intolerance to being upright, which means sometimes i cannot sit up at my computer for long periods of time, and brainfog, which just makes it... difficult to read, write, process anything. sometimes i want to work on a page for my site but my brain is too fogged up to parse a wall of text, or i'm just too unwell to sit at my keyboard and type. my chronic pain problems certainly don't help! it's always been pretty demoralizing because i KNOW i have passion, i KNOW there's so many things i could make, i just work at a very slow pace because of the intermittent way in which i have to work on my creative projects. it even makes me worry that other people look down on me and think i don't care about my own art, which i do! and hopefully some of this changes now that i'm just beginning to get proper help with managing my chronic illness.

on the other hand, web development and web revival has added so much to my disabled life - making a website was an out of pocket, impulse decision for us at first when ayano just decided to throw herself headfirst into a pokemon fansite one day because why not, but since then it's blossomed into a whole new hobby. like, yeah, we work slow, but we also love it whenever we're capable, and i think we feel more pride finishing webpages than any other form of art. the indie web, neocities, etc, has also reminded us to slow down and take a breather from social media, be more human, and stop doomscrolling, because when you're a disabled homebody and the computer is your lifeblood, it can be reaaallyyy easy to drown in aimless harmful-to-self internet activity. neocities is a creative outlet to get away from all that and give us something to be proud of.

point is, i feel like i'm constantly going between feelings of inadequacy, comparing myself to fellow webmasters, and wishing i could consistently do more, but also experiencing so much joy because of the indie web and being genuinely passionate about it as an art form. it's a complex relationship but a worthwhile one! i also post this in a positive sense, being disabled is not a tragedy, just a fact of my life and i have interest in talking about that part of my life experience. overall i love programming my silly little HTML/CSS/JS things quite a lot, this is not a cry for help or anything lol

i'd imagine there's likely other users on this forum who are disabled in some form and i was wondering how making websites and whatnot interacts with your disability, or if it doesn't at all! and if it impedes your ability to create, how do you deal with it? is there anything you're really proud of creating in particular despite the barriers to making it? just anything else on the subject you'd like to share? the possibilities are endless :ok: <- this is my first time using one of these emojis. they're so silly i love them

- kiki

edit: noticed a typo right after posting ; _ ; lmao

I relate to this a lot.

My disability is type 1 diabetes which means 24 hour monitoring of my blood sugar (much more convenient now with CGMs) and constantly calculating insulin dosages, worrying if I did too much or too little (both can have awful consequences.) Things are better than they were when I was dxed 22 years ago. The insulin pumps are better, Tandem invented Control IQ which has been a huge blessing for me. CGMs mean I have finally stopped sticking my fingers for mini blood tests; it took 4 years of CGM use for the scars and callouses on my fingertips to heal, but they finally did. Seeing the technology develop in real time, and seeing how it co-developed with the internet, has been an incredible thing to watch and I can appreciate how far the field has come and how it's improved my life immeasurably.

On the other hand that doesn't disappear the problems I deal with. It's a mental weight. Being disabled is a constant drag. The mental fatigue is just as real as as the physical. You have to make thousands of little decisions every day and you can't therapy your way out of it, you can't take a "mental health break" from it. That means that your tank of gas for everything else is naturally at a lower level. Sometimes I'm so fatigued from getting through the day that I can't do anything at all. On those days I used to doomscroll endlessly and I still battle that urge all the time. It's exactly as you describe it too. It's easy enough to block things on my laptop but man my feelings towards my smartphone are definitely mixed.

What disability has taught me though is to take everything slowly. I have to cope with my disability, this is the first order of business every day. I learn things at a slower pace than everyone else as a result of my disability. Everything in my life takes a backseat to it. I think that this is also true for web development. Being a webmaster is a hobby when you do it the way we do it. It takes time for me to learn how to do things with HTML and CSS. I do it because I like it but it just takes so long to do everything. I'm embarrassed at how basic my website is and I haven't updated it for months but it's because I have to live with something that drains me, every day. So I can't go at the same pace as everyone else.

So when it comes to comparing myself to others - when I feel like a failure - when I see others doing the things I wish I could do but don't know how (this is true in web development and every other sector of life)... It really can be hard not to get bummed out over it.

But the important thing IMO is to take a deep breath and remind myself that I'll get there. I'll figure out those projects. I'll do what I want with my webpage. I work at a different pace than other people because I have to deal with issues that they don't.

TBH I think that those webdevs we admire would be the first ones to tell us that we are doing alright... that doing things at our own pace is okay.
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