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Disabilities - Blog Posts
(tw : brief mention of faking mental health issues)
I think it's valid.
There are many people who can't access an official diagnosis of their mental disabilities for various reasons such as, poverty, being part of another marginalised group (women/poc etc), being a minor with unsupportive or unwilling parents and the list goes on. Some people simply don't want to and I get why. An official diagnosis can limit you in many ways such as travel, healthcare, education etc. An official diagnosis can also make you more prone to ableism from the government, schools and workplaces.
Either way, self diagnosis is extremely important whether you choose to pursue an official diagnosis or not.
(Side note : I don't think it matters in the grand scheme of things if someone fakes a mental disorder for attention. Of course, it is disrespectful and you shouldn't do it but people with mental disorders barely get support anyway so what would they exactly be taking away from us? Stim toys? The only thing I can think of is therapists but there aren't many that specialise in disability so 🤷 I think the only time it could be considered a bad thing is if they're spread harmful misinformation like if you're gonna fake something, at least make it believable. To be honest, I feel bad for those who fake a disorder / disability because they might be so attention starved that they would do that.)
Sometimes communities and fandoms online can be... toxic with their comments and opinions.
It can be hard to enjoy something when you see so much hated/negativity around it.
I'm having a hard time trying to type my thoughts out, but what I'm trying to say is;
As long as the things you are enjoying aren't hurting anybody, then continue to enjoy those things. Don't let other people's negatively ruin your view of the thing and bring you down.
SIDE NOTE: Just try to be aware of things like racism, homophobia, transphobia, ableism, sexism, etc. Those are examples of what I meant by "as the things you are enjoying aren't hurting anybody..."
Everybody has their opinions.
God, just give me a person I can talk about things like...
Anime/Manga
Art/writing
Games
YouTube
Memes
Movies
Fandoms: Star Trek , etc
Understands disabilities on some level
And they don't even *have* talk, just listen and understand my bs
Basically give me my soulmate for the love of all things holy.
As someone who has an 'invisible' disease, and who seems 'too young to be disabled,' when I was still on my journey to finding the right meds, I got a thing that allowed me to use disabled spots. (I now don't need it, as I am in remission.) If I was not in the great land of Canada, where our (unofficial) slogan is, "Be nice, we're Canadian." (at least what some people say) someone would have probably asked why I was using a disabled spot or that I didn't look it. Just because I'm not using a wheelchair or crutches or 'look disabled' doesn't mean I'm any less valid.
i hope you guys know defending disabled people's right to exist in public also involves defending disabled people's right to exist in public in ways that others might perceive as annoying, unpleasant, uncomfortable, and inconvenient at times. a blatant example is the "slow walker" thing. someone with tourette's syndrome who has issues with verbally ticcing is likely going to have trouble staying quiet in a public space where they're expected to be and doesn't deserve to be met with anger or punishing behavior for it. autistic children (and some adults) getting triggered into meltdowns due to an overstimulating environment. people with hearing problems having their phone on speaker while on a phone call. a wheelchair user taking up part of the road/sidewalk/aisle. people with autism, adhd, hearing problems, or other things that affect volume control having loud conversations. someone audibly talking to themselves, which can be attributed to many things. motor tics. dyskinesia. ataxia. pseudobalbar effect. the list goes on. some of thus may even be potentially triggering for your own issues if you're someone who's also mentally and/or physically disabled, but if you're well aware of how you can't help your response to it, you should be equally aware of how others can't help themselves either. people who aren't able to be disabled quietly and conveniently don't deserve to be punished or met with anger (or turned into a spectacle) for not deciding to shut themselves away.
they are losing a limb, this exact time u decide to ignore this post.
10 children a day lose their limbs in Gaza. All hospitals in Gaza are basically barely functioning and the amputations are done in unsanitary conditions and without anesthesia
shout out to “gross” disabled people.
people who can’t shower/bathe people who can’t shave people who can’t wash their clothes people who need help going to the bathroom people who have nasty habits (biting nails, picking nose, etc) people who can’t brush their teeth people who can’t go to the doctor people who can’t clean their room people who can’t make their beds people who vomit a lot people who wet the bed people who constantly have diarrhea people who’s physical deformities are seen as repulsive
and every other kind of person I missed that deserves to be here too.
you are people, first and foremost. your thoughts deserve to be heard, discussed, acknowledged, no matter what. you are not lesser. you are just another person. you should never be ignored for what you can/can’t do. you deserve care.
to abled people: check yourself. make sure you listen. and you can reblog, just don’t derail. maybe don’t add on, either.
Gazal was wounded on November 10th, when, as her family fled Gaza City’s Al-Shifa hospital, shrapnel pierced her left calf. To stop the bleeding, a doctor, who had no access to antiseptic or anesthesia, heated the blade of a kitchen knife and cauterized the wound. Within days, the gash ran with pus and began to smell. By mid-December, when Gazal’s family arrived at Nasser Medical Center—then Gaza’s largest functioning health-care facility—gangrene had set in, necessitating amputation at the hip. On December 17th, a projectile hit the children’s ward of Nasser. Gazal and her mother watched it enter their room, decapitating Gazal’s twelve-year-old roommate and causing the ceiling to collapse.
UNICEF estimates that a thousand children in Gaza have become amputees since the conflict began in October. “This is the biggest cohort of pediatric amputees in history,” Ghassan Abu-Sittah, a London-based plastic-and-reconstructive surgeon who specializes in pediatric trauma, told me recently.
Right. I feel incredibly awkward doing this, but Tumblr - I need writing advice.
Basically, I’m writing a story, and one of my characters is blind in one eye. I recognise that life with partial blindness is different to fully sighted life. However, I’m fully sighted, and I don’t want to accidentally make mistakes or offend anybody. So... I have some questions. If anybody with knowledge about any of this can answer anything, or throw in extra info, that would be great!
First off, a little background about my character. He was born fully sighted, but got into a fight at 16, and got stabbed in his left eye. He survived the attack, but even with heavy surgery, he wound up blind in his left eye, whilst his right eye can see perfectly well. He’s now 19 years old, and has a job as a hacker/computer specialist/hacktivist. Now, for the questions!
1: Is there any way that being partially blind heavily affects day-to-day life? I know that depth perception would be heavily impaired or completely gone, because of biology, but I have a feeling that there’s more to it, and it’s different from full blindness/impaired eyesight in both eyes. So, I’m just checking on this.
2: Would any adjustments have to be made to living spaces to accommodate him? (He currently lives on the road/out of his car, if that affects anything. On the same note, could he actually drive? Because of the depth perception.)
3: Are there any other effects that partial blindness has on one’s life that I might be overlooking? Like, emotional effects, mental wellbeing, etc etc.
4: Would it be an effective idea for me to buy an eyepatch and cover my left eye with it for one or two weeks, or is that incredibly offensive and not a good idea? I might edit or follow up on this post with more questions in the future if more arise. Please tell me if I’ve been offensive here, or made mistakes with phrasing, tags, anything! I don’t want to accidentally be rude! Thanks in advance for any advice people might be able to give. :)
If there's one thing I want you to do as the world gets colder, get kinder. They will comment on things that don't make sense just to be mad. They will start fights just to see you get mad.
They are mad. You might be mad. But you don't have to be mad at one another.
Just...don't participate in petty debates that you will never win. That aren't meant to be won. Especially as we descend again into the hellscape that is this type of rhetoric and cold world.
Be nicer to neighbors, friends, family. Take losses. Be the bigger person even when it HURTS. And when it comes to family and friends, it will. Of course don't concede your values. But don't push people away you depend on and rely on and want in your life either unless you have no choice.
Love yourself more than anyone. If there's any time to be selfish it's also now. Save your grace and ignore trolls. Ignore people and conversations and communities that don't serve you. If you have hobbies that don't serve you anymore, cut them off. Social media you don't use? Delete it.
Lastly, don't spend the next four years wishing you did more. Do more. Or do as much as you can. Your best is good enough. Stay in the moment. You don't need to dwell on the past, and you don't need to have a five year plan. Don't let the trauma of your environment shut you in. That's what I did during the last Presidency of this type, and I do regret it. Because I burnt out.
I love you. One day we will be able to love and live with reckless abandon again. With freedoms and liberties assured. Until then, we are here for one another, and we will get through it.
We did it once, we will do it again.
Slow progress is still progress, dammit
It's been a hot second (i.e. an ungodly amount of time) since I posted anything to do with my third and final AoD-sequel novel. Suffice to say I'm genuinely uncomfortable talking about the progress – or lack thereof – of WIPs, especially when they've been WIPs for so long they've started sprouting little purple tendrils and have knotted together into a Lovecraftian horror under the sink.
This is in no small part because of my ongoing health issues. Privacy is very important to me, but it's also no secret that I'm disabled with multiple chronic conditions. I'd hoped, back at the launch of Path of the Black Alchemist in the summer of 2023, to have wrapped up this project and published the final book by Christmas. Or at least spring 2024. Or the next Christmas for certain.
Life, of course, has had other ideas...
The important thing is that the third book IS coming and I AM making progress – even though at times it feels so unbearably slow that it's in danger of being overtaken by hibernating snails. It's no coincidence that part of Lara Croft's arc in this story is about coming to terms with her limitations and accepting/offering help; a huge part of my own life's journey has involved deconstructing my internalised ableism and learning that it's okay – even necessary – to embrace support from others. We're so conditioned to be perfect little self-sufficient, independent individuals that reaching out during hard times can automatically make us feel like a failure.
In reality, nothing could be further from the truth... as Lara finds out the hard way.
Another factor of this challenge is trying to reach out more online. To connect and grow with other creative minds. Hence, this post. Fatigue/energy limitations are a HUGE part of my daily life, so setting spoons aside purely for this is a Big Deal (TM) for me. Tumblr feels like a safer, more welcoming place to write more of these long-form musings than other SM platforms, so we'll see. It's counterproductive for me to make grandious promises about posting every day, or even every week, but it'd be cool to reach out more and try to open up a little after so long retreating into myself these past few years.
I'm also considering (but haven't yet committed to) sharing my works over on AoE. On the one hand, it's more work in the short term. But on the other, I'm seeing a lot of engagement and encouragement in the AoE community even here on Tumblr. Those of you who use it regularly: what would you recommend?
Bon chance xxx
Can we talk about how those “easy open” bags are 90% of the time harder to open these days? Like WTF 😬 why did someone screw that up?!
10 children a day lose their limbs in Gaza. All hospitals in Gaza are basically barely functioning and the amputations are done in unsanitary conditions and without anesthesia
Absolutely, it's a good feeling to know that you have everything you need close by!!
- Shay (They/it)
My family always gets annoyed I keep a bad with me (either in the car or on my person) but I need it
It has my money, my id/my learners permit, noise cancelling headphones, blue tooth headphones and ear buds, period pads, small snacks in case I didn't eat and/or I feel fainty, A book for in case I need something to focus on/fill time, a couple bracelets and a plushie to fidget with and help if I have a melt down, as well as my tablet for my music for car rides and to distract from the other over stimulating noises and my house keys, and a small notebook and a pen/pencil in case I need to write something down so I remember it or doodle
All in just a medium sized backpack
I don't always bring it in with me depending on the circumstances, but I like knowing everything I need I have at least somewhat close
When I actually get my shit together and work on getting a service dog in this life, I am probably gonna try and get a german shepherd and name them Remo or something similar cause yeah.
When I get my shit together, I will probably be asking for donations, but I want to know more before asking for money. I am unsure of what program I am going to use exactly, I have an idea, but idk yet.
I should probably try and get diagnosed anxiety [cause I haven't been diagnosed, but it's definitely obvious] and maybe look into OCD and PTSD more? I know I have trauma and shit, I just don't know if it's PTSD levels or whatever. And the OCD I am unsure if it's just the AuDHD combo or OCD as well.
If anyone has any advice about any of this that relates to America, please feel free to give the advice.
- Zuki Shay Lupo (They/it)
I'm bored and can't sleep [it's a little after 4 am where I am lol], so here's a thing about me that I'm kinda surprised I haven't talked about yet, lol.
When I was Zuki, I had a service dog [in this life, I also need an SD, I'm gonna probably post a separate thing about that at some point], he was a german shepherd named Remo (meaning strong one or something like that lol). I miss him as much as I miss anyone else from my canon, maybe a bit more than certain people, but I feel like that should be understandable, he helped me actually live life, yeah I still had problems but they would've been way worse without Remo. He helped me actually be able to do more than I would've without him, as service dogs do lol, but still.
I'm really bad with words and shit and it's late/early, so that's likely not helping. But just yeah, thought I'd share this, not sure if anyone even really cares, but whatever, lol.
- Zuki Shay Lup! :3c
It's actually so comforting to have classmates with mental illnesses or issues. Like, yeah, I'm not alone in this shit!
The guilt after getting ill is consuming me away. I wish, I was able to change or heal.
When you suddenly realize that you need to do your lessons, but your whole body is hurting and also twitchy and a small activity could turn you into a shaking mess:
Sometimes it amuses me how if epileptic will have 6 seizures in one day, they will be hospitalised immediately and given treatment, while with dyskensias they just... Give the "Well, damn, but you're conscious during seizures." Yeah, I am, but why the fuck I had 6 in a row?? Sometimes, I think that tearing my ligament wouldn't be as hard as getting treatment, lol.
Speaking about dyskinesia always makes people assume that you're talking about FND. Errr....
When your illness is so rare, that you've 62% chance of being misdiagnosed and everyone who you find on YouTube is a random old guy and just a 18(?) years old guy:
Calling every chronic illness a "disability", is low-key stupid, don't y'all think like that? It is almost as if y'all tried to put a label on everything you don't understand. Sometimes, illnesses can, just... Not fit in your expectations. And y'all should accept it. Repeat after me, "Not every chronic illness is a disability!".
Not all seizures are epileptic, and not all non-epileptic seizures are PNES. Hope this helps!
Years will pass and I will never understand, why, just why, there's only 2 sides when it comes to my illness? Some of you immediately start to pity and pamper me, treat me as if I barely understand something, while the other consists of people who are almost the same as the 1st type, but these are trying to do it differently, trying to look caring and understandable, but in the end they are almost the same. And also, since when the phrase "I'm not letting my illness stop me." Became something ablestic? No, I don't want to treat myself as a snowflake. I don't want to do something less, because YOU think that I'll have a flare up. Flare ups are only MY and MINE DEAL, NOT YOURS. I don't want to sit and whine about how fragile my body is. This only makes me look WEAK. Since when I need to work less, just because I'm ill? Maybe I WANT to work?? Maybe I CAN work?? Maybe, it is YOU the one who sees only code in my med card?!
And still, I'm curious how an appointment which I used to go to every week a few months ago, turned into something I'm afraid of. Making me have flashbacks over and over when I just hear the word "neurologist. Made me have a whole panic attack just because I need to go to a doctor. No, please, I don't want to be treated anymore... Can't you just avoid me? Don't remember about my disease? Make me live a normal life?
To be honest, after years of searching, trying to find my diagnosis, I just... Stopped caring about this. I even started to like this thing, I know, it harms me, but do I want to treat it? No. It's a part of me, that I like.
When the pain hits THAT hard that you need to work while laying down
The doctors had been neglecting me for more than a year, and the day after yesterday I casually had tremors, though I needed to stand up. It wasn't too hard, though I walked like a soldier, cuz my legs were too stiff. And yesterday and today, I noticed a glue-like feeling in my joints, as if some liquid was there, plus it's SO FUCKING PAINFUL to bend it... It starts to hurt, burn and the glue feeling gets worse.... I don't know what to do... Looks like I ended up damaged due to the malpractice of doctors!
I hate how expensive genetic tests are. Like what do you mean I should pay 1000-2000$ and wait for half a year to get a proper diagnosis? And if only my disease was simple to see on MRI or EEG... This thing is only seen on a few scans and mostly you need to take a genetic test. BUT THEY'RE SO FUCKING EXPENSIVE... Please, someone, buy me this test, and I'll kiss your legs
Anti-vaxxer extremist RFK Jr, the US Health Secretary, is now actively trying to collect medical records of folks on the autism spectrum. First, he used dehumanizing and infantilizating language to insist people with autism won't 'pay taxes and live a 'normal life' which we all know is ableist bullshit and is literally a precursor to genocide. This man is a monster.