By the very definition of being disabled, a condition that is debilitating, hindering and DIS-ABLING

Your condition can, will and does stop you from doing things

That doesn't mean you're always entirely incapable, you can still be capable of things

But there's no shame in the cants. Nothing wrong with the can't dos. It's okay to let your disability stop you, that's pretty much the point of calling it a disability, of having one, is that there's some things you can't do.

That's fine.

So next time someone says some shit like "don't let it stop you" or doing something regardless of your condition

Ask them to define the word disability. Or just tell them to go fuck themselves cuz they are not with the spoons you could spend on something better.

Hey! Just because you:

- have more expensive mobility aids

- are listened to by your doctors and have formal diagnoses

- think you have a “bigger” or “worse” diagnosis than someone else

- have insurance that covers things for you

- go inpatient often

- have a care team

- are on disability income

etc

None of that makes your disability “more important” than anybody else’s. That’s called ableism and you are not immune to it!

(tw for ableism)

I want to talk about a more negative part of being an AAC user, that being the embarrassment and anxiety I experience from it.

AAC is extremely useful for me, and I feel empowered by it. However, I also feel anxiety and embarrassment sometimes. Not because of being an AAC user, but because of how society treats me being an AAC user.

Personally, I have experienced embarrassment around using AAC in different situations. For example, I have felt self-conscious about using my device in public places such as restaurants, shops, or crowded events. I have also felt embarrassed when people stare at me or ask questions about my device, which can make me feel like a spectacle.

Another source of embarrassment for AAC users can be the feeling of being judged or misunderstood by others. People might think that we are less intelligent or capable because we use AAC instead of oral speech, which isn't true at all, being nonspeaking does not mean I am nonthinking.

Hey folks,

My body is shit and because of my heart condition I've been given a machine to help me breathe, mostly at night but in the day too when I need it.

It's eating into my electricity (the NHS is great but they don't cover running costs.) I'm stretched thin financially as it is, so as grateful as I am that it's helping me breathe, I guess it's adding quite literally to my cost of living.

Anyway if you'd like to help me keep on top of electricity costs my PayPal is here and my Ko-Fi is here.

If you can't (or just don't want to) this isn't for you, but if you would like to do something and can't help out monetarily you could write to your local MP about the importance of the NHS because we all know it's struggling.

Thanks for reading, and now I'm partially a cyborg I'm hoping to be spared in the upcoming robot apocalypse.

i've had a severe case of oral thrush (candidiasis) from being immunocompromised for over a year

but since I present flatly and friendly and half the time with a written list because i'm non-speaking that day: my doctor apparently has no clue this is a complaint.

I've done a no dairy, no white carbs diet for a month,

no acid diet

tapered off the prescription antacids and stopped eating anything fatty to cope with the acid reflux in case that helped

each time I reported back in writing that it hadn't changed things

went to the dentist who said you have a really bad oral thrush see your doctor. On his word I finally got treatment for it in December and said "this isn't strong enough a dose but I'll take it while doing all the diet stuff on my end to maximize chances, and i'll report any changes": I was able to taste the christmas meal and sleep without numbing my tongue sores. I requested a higher dose - I was told treatment failing means it can't be fungal, I didn't contest this vehemently enough but forged forward with lab tests instead:

6 lab tests because the local lab doesn't test for candida but didn't say so. I found a private lab willing to take a swab, and they reported back that I have a severe case: 10^7-10^9 cfu/ml.

sent those results via email and today the Dr said: "you haven't complained about your mouth, and we already treated for oral thrush, i guess i could give you probiotics to rebalance oral PH"

Obviously i'm already taking probiotics and have been for 6 months.

I am this close to switching my mouthwash to a peroxide solution and eating fish tank cleaner.

What I need to do is make a scene, perform the distress this has caused me privately to the doctor directly, verbally with emotion.

I am currently flat as hell from depression. I couldn't cry if I stubbed my toe and imagined losing someone close (that's actually regular intrusive thoughts).

10^7 cfu/ml is 10 000 000 fungi per ml, it should speak for itself. Normal amounts are less than 100 cfu/ml. I don't understand how "massive pathological yeast infection of the mouth" by a specialized lab tech is somehow inconclusive.

--------------------

i am too autistic for my doctor to see me as human and that's what i've known for a while now, the worst part is that it's made performing emotion or even making words even harder. I know she's having serious memory issues at the moment too and was willing to pretend it was that, give her some time.

i think i'll have to wait another month and see if I can "perform", if only by persistence: send her photos of my mouth every week with sad emojis.

"He was disabled," the able-bodied human wrote, "but he could still love; he could still be human"

*I wonder why no one likes my stories of disabled people... oh I know!*

"Their relationship was fractured and they loved each other less, because he's a (insert slur) now but they're growing. She no longer strands him without his mobility aid when they fight and instead takes his communication cards. "

They stand and leave their desk

*ahh romance*

that neurodivergent experience where you physically cannot function when being perceived by others

yesterday i left my house four separate times and today i am too weak to stand up for any length of time without getting dizzy

i write this sitting down and i am still dizzy

i hope i am ill and not experiencing the consequences of my actions! it's been a while since the consequences of my actions have caused this much fatigue! and i do not want that to be a new trend!

(yes i've tried water and food. no i haven't dug out my compression socks. yes that would be good to do but it requires. walking

body WHY)

I swear this is the exact face I find myself making during painsomnia hours when I get ideas on how to write a fic

On this very special day, my 1 year anniversary on Tumblr, I feel it’s only appropriate to post my… (dramatic pause)… FIRST POST!!! 🍾

Better late than never? Let’s go with that. Please, hold your applause. I’m not sure what to write 🤔

I suppose I should introduce myself. My name is Tyler Parish. Most people call me Ty. I’m an artist, YouTuber, writer, stock trader and I live with a disability that causes me to use a wheelchair. I will be posting on Tumblr more frequently and will have some exciting new content to share with you. In the meantime, I invite you to checkout my website below to explore more. Thank you for joining me on this journey!

no you cannot hold my cane while im not currently using it

no you cannot grab it from where i rested it while i was sitting

no you cannot borrow it nor try it out for a sec

no you cant take it from me while im occupied with a task

even if you did ask my permission before doing any of this id still say no

keep your fucking hands off my aid

the only time you can touch it is if i ask you to pass it to me, and no that doesnt mean you get to try it out that is not permission for you to use it.

I love you people who grew up as sick kids who were denied care by caregivers and/or professionals.

I love you people who had to learn how to hide your symptoms and are now so good at acting “fine” that nobody believes you.

I love you people who have always known something was wrong, but were never given the tools to express it.

I love you people who are jealous of those who received childhood intervention and adequate care.

Your experience was and still is in no way less important or less traumatic than those who received care and were allowed to express the pain. In case nobody told you yet or you need to hear it again, your pain has always been real, and you were treated unfairly. You never deserved that. I love you.

Activism Social Medias

I have some social medias I use for disability activism. Please check them out! My blog

My Instagram

My Tiktok

This activism and my work are very important to me. Check them out!

I’m starting to wonder if MS might be a possible explanation for a lot of my symptoms. I have a diagnosis of NF1, but NF1 doesn’t really explain a lot of the endless list of symptoms I experience, across every system in my body. symptoms including, but not limited to:

 - scoliosis! really bad scoliosis! i got my first spinal fusion when i was eight years old. another at 12. another at 22. i now have half my vertabrae fused, my entire thoracic spine, with rods and screws. nf1 can explain this one, it causes bone deformities.

- white flashes in my vision. i’ve started to develop this symptom over the past several weeks. i will get what looks like random flashes of bright white light behind my eyelids, at unpredictable and inconsistent times. at first, i thought this was my electricity or my overhead lights being weird, but then it began happening both inside and outside my house, and in different light conditions.

- numbness and tingling in my hands and feet. for the past year, more often than not, i wake up with a pins-and-needles or numb feeling in my feet and/or hands. this feeling seems to travel up into the forearm or calf, and it gradually goes away over the course of my morning. but sometimes the numbness comes out of anywhere! it’s especially likely to happen when i’m typing, holding my phone, or drawing.

- random hand spasms. this happens sometimes where i’ll be gripping an object and one of two things will happen: my hand will spasm and the object will go flying, or it will suddenly seem like i’ve lost all strength in my hand and the object will slip from my fingers and fall to the floor. this doesn’t happen very often, but i am trying to keep a closer eye on when it does

- pain pain pain fucking everywhere all the time. my hair hurts my toes hurt my gums hurt my chin hurts my fingernails hurt my stomach hurts my stomach always always always hurts...

-i’m so tired all the time, like a bone-deep fatigue that’s sometimes so severe that walking to the corner store is exhausting, sometimes just brushing my teeth seems like such a herculean effort of strength that i skip it. everything that seems so easy for everyone else is such an endless struggle of fatigue and confusion for me. on my bad days it feels like i’m carrying a backpack full of rocks up a mountain.

- gastrointestinal problems so severe i’ve had to start drinking meal replacement drinks because my body has decided that it doesn’t want to digest solid food. i’ve had a colonoscopy, endoscopy, gastric emptying study, barium study, blood tests, and imaging done to find the cause of my dietary issues and nothing. ever. comes. up. getting endometriosis surgery solved a chunk of my GI problems, but I’m still suffering from being underweight and malnourished and Ensures are the only things keeping me alive.

-memory problems that are so bad, i often can’t recall conversations or outings with friends, and sometimes i have trouble recalling daily events. i’ll get to a store and i can’t remember how i got there or what i need to buy.

- not-seizures, “episodes” that i’ve never known how to properly describe to doctors or anyone, which have been confirmed via EEGs to not be epileptic in nature. during these “episodes”, i’ll be having a conversation or doing normal tasks, and my eyes will get stuck on a particular point or object in the distance. my eyes get wide and unfocused, and my vision gets soft and blurry around the edges. sometimes my eyes feel warm and tingly. my body feels like it’s humming, or sometimes it feels kinda numb, but there is a bodily change in sensation. i’m aware of what’s going on, and sometimes i can continue responding to a conversation, but i can’t pull my eyes off this one point in the distance. they’re stuck. sometimes i go quiet and stop responding. my brain feels like it’s buffering, like i’m looking at the world through a shower door fogged up by steam. this lasts for 10-30 seconds, and then it just stops and i go back to what i was doing before. i’ve been trying to get these evaluated for years, and have never found an explanation.

-white spots on my MRI scans, which has lead two different neurologists to suggest i get workup for MS. white spots are relatively common in NF1 patients, too, but with the amount of symptoms I have that don’t really align with Nf1, I just don’t know. I’m going to try to find a specialist to give me a “workup” and see what happens from there...

me bragging to myself every day: It's amazing how far i've come from getting the sweats just at the thought of a needle to doing my own daily injections, well not quite fearlessly and without hesitation, but I get it done, I'm doing great!

new injection format: You sure about that?

old format: toy sized, plastic exterior, auto stop with spring-loaded auto retractable needle

new format: bog-standard glass syringe with needle disposal (the orange flap that gets in the way)

Just a reminder that fake claiming is not worse than average abelism.

If you say you don't believe I'm disabled, that hurts but okay that's your opinion and it's wrong.

If you take away my medicine, mobility aids, and access to doctors, I will suffer significantly more.

It's not the same.