#disability advice

[spandexbutterfly4lyfe]

Okay listen I have another disability related thing that’s important!!

If you have any disabilities linked to tooth decay/erosion, through direct cause or secondary symptom, it is vital that you get one or both of the following items: Sensodyne toothpaste and enamel repair mouthwash

This includes health conditions such as acid reflux, diabetes, thyroid conditions, fibromyalgia, chronic pain & mental illnesses such as depression that create poor hygiene routines, sensory issue disorders like autism and ADHD, and any health condition that causes frequent vomiting / increased stomach acid, including eating disorders and migraines.

All of these disabilities will erode the enamel of your teeth, not only opening you up to cavities but making it very easy to chip your teeth from such simple things as biting the wrong way on the tines of a fork. (I’ve chipped my teeth at least 4 times this way).

The toothpaste on the left here (sensodyne pronamel) is gentle on your teeth, won’t cause painful sensations from any extreme mint flavor, and will even protect your gums if they’re sensitive from any of these conditions.

The mouthwash on the right (Crest enamel repair) will, as it says, repair your enamel — which is marvelous, because the technology to repair your enamel at all is relatively very new to society! — but it is most importantly non-alcoholic. Meaning that it works well as a once-a-day rinse without any of the burning sensations of antiseptics that typically discourage people with sensory issues from taking care of their teeth.

I know remembering to do these things every day can feel like a lot when you’re sick and exhausted, but I promise a collective three minutes out of every day is going to save you an incredible amount of pain and money in the future. If your teeth are susceptible enough to rot, you can actually die from infection. And as they say, with how little insurance actually covers dental —

Not brushing your teeth??

In THIS economy???

#disability #disability stuff #disability help #disability advice

[uncanny-tranny]

"Pro" tip: If you're somebody who doesn't always need things like braces or crutches or anything like that, and so you're thinking to yourself, "I won't need this for today, my pain isn't that bad!"

Don't listen to that, that is the devil speaking. Bring your aids with you just in case, because a good day can quickly end on a sour and painful note. It's better to have it and not need it than to need it and not have it.

#disability #disability advice #guess who is learning this the hard way over and over again :) #because i am stubborn and too confident in my body's ~ability~ to not fuck me over for a good portion of the day #cannot remember if i have made a post like this but hopefully this starts holding me accountable

[disabledbutchblues]

able-bodied neurotypical people want quiet disability. invisible disability. they love it when we don’t complain and don’t shove our needs in their face. they love it when we stay home and die quietly instead of trying to live (but they don’t like it when we stay home and need caregivers).

[paragraph about self then next ones on more general and important things] i recently realized that i make many people uncomfortable irl because i talk about my symptoms. i wasn’t aware it was wrong, because i’m autistic and struggle a lot with notions of public vs private space, and what can be said to whom. i’m very open about my disabilities and struggles, both because i don’t realize i’m saying something i shouldn’t, and because i don’t have a choice and often can’t mask (i am not high masking. not low masking either tho). i don’t wear unnoticeable noise cancelling headphones, they’re not good enough for me at all, i wear big obvious ear defenders with a fluorescent part. i sit down on the floor of a store if my legs hurt. i don’t sit normally anywhere, including at school, because i can’t, i can’t sit correctly and not move, it’s painful. i don’t hesitate to tell people i have terrible executive dysfunction. i openly say i am in pain and need to rest, even if it’s abnormal for a teenager to not have a healthy strong body. when it seems relevant to the conversation, i share the fact that i struggled with an eating disorder and self harm and that i recovered/am recovering. when someone asks me how i am doing, i tell them i’m feeling terrible because i am in pain or because i am suicidal or because i am overwhelmed— this is partly a choice to be open about my disability, partly the fact that i don’t notice until it’s too late that they don’t want me to be honest, and party the fact that there are many things i cannot hide. i tell people that i am not independent, can’t cook, can’t go to new places alone, can’t shop, can’t maintain hygiene and that i don’t shower enough or brush my teeth regularly. when someone asks if i plan on learning how to drive i say that i don’t want to right now because my processing issues would be dangerous and i would get in an accident. i tell people i have meltdowns and shutdowns at school. i hit myself in public sometimes.

yet i am not visibly disabled. i’m very lucky and privileged within the disabled community. i am visibly weird and there is visibly something wrong with me but i am only visibly disabled to someone who spends some time with me and sees me unable to process informations or unable to do IADLs. strangers don’t know i’m disabled until i tell them— they mock a symptom or ask why i can’t do something and i say i’m autistic, i’m disabled, i’m in pain. and they already hate that i tell them. they say it’s private. they say my struggles are something personal. something to talk about with doctors but that no one else should have to know about.

some people are way more disabled than me, visibly disabled, disabled at first glance. some use mobility aids, full time or not. some have intellectual disabilities, some use an AAC device, some have a physical disability that cannot be concealed or an intellectual/developmental/mental disability that very obviously affects the way they move or communicate. some people don’t have a choice to mask or not to mask, don’t have a choice to be visibly disabled or not. strangers will immediately notice that these people are disabled, even without engaging in a conversation with them. and they hate it ! disabled people are supposed to be quiet and invisible and going outside with ear defenders or a mobility aid or anything, no matter if it is a small or a huge accommodation, is too much. but the bigger it is or the more you need help to do a ‘basic, easy’ thing, the worse it is. they stare at me in the street because of my ear defenders, but they don’t just stare when someone is in a wheelchair, they touch and break and don’t have any respect.

ableists think disabled people shouldn’t be in their way because they think we shouldn’t exist or that we are worthless. having an accommodation or an aid in public is already activism for them, already disturbing, already forcing them to see that they are privileged and that the world is not accessible.

to exist as a disabled person is beautiful. it’s brave. it’s something to be proud of. not because it’s inspiring that you are strong enough to live with your disability, not because "someone else would have killed themselves already in your situation," not because "i could never be like that ! you’re so courageous !", but because ableism is everywhere and it’s so hard to live in this world where they don’t want us to exist. it’s so hard to advocate for ourselves.

and for those who are not visibly disabled (like me), or at least not always ; for those who have low support needs ; for those who know how to mask : point out inaccessibility. force people to see their own ableism. make them uncomfortable. it’s also our job, our responsibility. if someone mocks me and calls me useless because i can’t do IADLs i say i’m disabled, stay very calm and inform them that many people are unable to perform BADLs without help and that they deserve just as much help and respect as anyone else. if someone points out how annoying my ear defenders are i ask why the place isn’t accessible for people in a wheelchair. etc etc. listen to people with higher support needs than you and amplify their voices. but also act irl.

we can all do better and force society to be better to.

and remember that accessibility for you doesn’t mean accessibility for everyone.

a place that accommodates sensory issues might not have accessible toilets. so it’s not good enough. an autism support group meeting has stim toys and ear defenders and happens in a quiet place ? that’s wonderful ! can a nonverbal person participate ? are caregivers welcome ? we can’t just think that "something is better than nothing." yes it is, but it’s not good enough. if a place or an event is accessible for one thing but not for something else, then it’s not accessible. and we need to be loud about it.

#disability #disabled #disability community #support needs #ableism #internalized ableism #fuck ableists #disabled tumblr #disability advice #autism #actually autistic #autistic #chronic pain #mentally disabled people support physically disabled folks #low support needs #middle support needs #high support needs #physical disability #disability advocacy #disability accommodations #disability accessibility #disability awareness #disability acceptance #disability activism #neuropunk #madpunk #disabled punk

[youngpeachenthusiast]

okay after this one i swear i'm done asking for advice today

i'm currently in a fight with my mother because i refuse to take pain medication for my chronic pain. hear me out.

the way i see it, the pain meds i have available do absolutely nothing and i don't want to fill up on meds that don't work. like, that can't be good for my stomach or like, in general, right?

the way she sees it, i should still take it even if it doesn't help at all and if i don't take it i don't have the right to complain that i'm in pain.

i really do not know the answer here and am just looking for an opinion from someone who maybe is more used to taking meds?? this wouldn't be the first time she forces me to medicate to the point where 1. a whole category of meds doesn't do anything for me anymore 2. i hurt my body in the process, so that is where the skepticism is all coming from

#elliot talks #also if you do not have an answer please rb this so maybe someone who can help sees it??? #chronic illness #chronic pain #chronically ill #joint pain #chronic fatigue #disability advice #disability #disabled #i'm the kind of human wreckage that you love

[tea-and-spoons]

Spoonie Life Tip #8

You are allowed to ask your doctor for things.  Whether that be a referral to PT, a certain test, anxiety meds before a procedure, anything.  They may not agree, but you are 100% allowed to ask, and it just might work.

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #disability advice #chronic pain #chronic fatigue #chronically ill

[not-a-medical-student]

Photo from ECAD

Important information for those not familiar with service dogs:

Don't touch or pet without permission.

Do not remove a service dog from a passed out person, even if they are resting on top of them. That may be the dog’s job during an episode, so just call an ambulance.

Do not let children pet service dogs without permission, It's usually best to tell them you shouldn't pet at all because the dog is at work.

Emotional support animals are not the same as service dogs and are not medically necessary.

Any dog that sits in a shopping cart or purse is not a service dog.

There are idiots out there who fake service dogs, but don't accuse people of faking if you don't know how training is done.

Although service dogs are well trained, their work can be interfered with by loud noises and especially untrained, faked service or emotional support dogs being in spaces expected to only allow service dogs and no other animals. This is especially prevalent in Walmart and other public spaces.

Service dogs are still dogs, if you see one in public with someone it's best to leave the dog alone completely. Even merely making eye contact with the dog can distract it and cause him or her to miss something important. Dogs are very susceptible to human eye contact, it's in their DNA.

And of course don't try to feed them or talk to them while they are on duty.

ALSO

Some service dogs are trained to smell or otherwise detect specific disorders and alert their human in any number of ways. For example, if someone with diabetes blood sugar is too low/high, their dog can smell that and may alert them by laying their head on the human's foot. If a service dog does it's alert to you or anyone who is not the owner of the dog, you should go to the doctor to get checked out because it's possible it's a real alert that the dog sensed in you.

Thank you doggies!

#disability #service dog #service dogs #service dog awareness #disability advocacy #disability aids #mobility aid #disability awareness #disability advice #service animal #emotional support animal #disability services

[chaotic-archaeologist]

came because i’d never seen a disabled archeologist before (i want to be an archeologist really bad and i’m pretty sure i’m getting a rheumatoid arthritis diagnosis tomorrow as a teen so yk.) and stayed because i love your archeology postings and it’s comforting knowing there are people like me out there in my dream felid.

Hey, I have juvenile rheumatoid arthritis too! Being an archaeologist is absolutely possible for you! I've had to plan my career around my body's abilities, and sometimes it's been difficult, but it has been achievable.

The week after I got my JRA diagnosis I got my kazoo tattoo (designed by @art-thropologist) as a way to remind myself not to forget the whimsy in life. Maybe you can find something similar for you.

Finally, I hope that the diagnosis (should it be given) will open the door for you and your doctor to find some methods of care which will increase your quality of life.

It is terrifying getting a diagnosis that young. It's okay to be terrified—it's natural, even. Give any feelings arising from your health the time they deserve, and then let them go. Letting go can be a difficult, frustrating process. Have compassion for yourself.

People like you and I just have to play the hand that's been dealt to us to our best advantage. Sometimes that's really, really hard to do, and that's okay. Learn to think outside the box, to find opportunities and get accommodations. The path ahead of you does have some obstacles, but it is not impassable.

You're more than welcome to pop back into my inbox if you need someone who might understand what you're going through. I'm also always happy to talk about accessibility in higher education, studying archaeology in college, and being an archaeologist with arthritis.

Keep your trowel sharp and your heart hopeful,

-Reid

P.S. I don't know if you've tried topical Voltaren gel yet for inflammation pain, but that shit is the bomb. You can buy it over the counter now, but it's cheaper if a doctor prescribes it because then your health insurance will pay for it.

#because you're a minor I have to be careful about interacting with you on the internet #but I can talk about this stuff in a way that I can't with sex education for minors #good vibes #he speaks #disabled archaeologist #disability advice #archaeology #arthritis

[eddybear-owo]

Anyone have pros n cons of mobility aid? Try to find if i should use crutches or some other thing. Ps i have pain and fadigue and it affects mostly my legs and arms (and also my tired lil brain bt that's not the point) so i think that might be important to know? Since i have force my arms to use crutches yk

Theres a lot of things i can use, heard about compression socks too, i might use that but idk :p

ps i don't know much about mobility aids that's why I'm asking for advice, please don't be mean :')

EDIT: I SHOULD'VE SAID THIS BEFORE BUT I MENTIONED COMPRESSION SOCKS BECAUSE MY PAINS MIGHT BE VASCULAR SOOOOO YEA THATTHE CURRENT SUSPICION

#disability #actually disabled #disability advice #chronic pain #chronic fatigue #cpunk

[neon-vocalist]

anyone have advice for a cane user? mine’s coming tomorrow after an impulse buy and like. help what do i do

#disabled #disability #disability pride #cane user #mobility aid #mobility aids #disability advice

[spotty-is-slumberous]

So… this is. A bit of an emotional post for me to make, and I’ve rewritten it a few times and cried over it far more, just because I’ve been feeling very lost and hopeless recently, and I just… really want some advice. Some suggestions. … Some comfort, even.

I turn 20 in April. I spent my last “milestone” birthday, the 18th, half-convinced that I was dying because I had undiagnosed POTS, narcolepsy, and intense chronic pain that genuinely made me feel like I was on death’s door… so, uh, I didn’t really do anything special for that birthday. Or my 19th, as I was also in very poor health… though I’ve now come to the understanding, two years later, that this “poor health” is just. Not ever going to get better.

I haven’t done something “big” for a birthday since I was a lot younger. And with the way things are shaping up for me, this might be the last birthday I’m able to share with my family before I’m inevitably kicked out because I just can’t keep up with college and the deal was I either stay in school or work to stay at home, and I can’t get a physical job for reasons that’ll become clearer later on.

So… This all to say, I’d like to do something “big” for this birthday. But… I have some pretty heavy restrictions. I don’t have a wheelchair (The cheapest one I have my eye on is about $300 out of pocket, and I just. Don’t have that money. Ive been trying to save up for that, though, as it would help me get an actual job + let me get out of my house more with significantly less worry… I’ve been begging my doctors to help me get it covered by insurance, but they claim that it’ll just make me regress, which is… a whole other issue) and can only walk maybe 5-10 minutes with a cane before I need to rest. If I push myself, I’ll be bedbound with blinding pain for the next day or so, or I’ll just straight up pass out — or, usually, both. The weather is turning warmer, and I have a severe case of heat intolerance, so I can’t be outside for long.

I’m not a fan of museums or aquariums or the like… Im not smart enough for escape rooms… Bowling is out. Most arcades are out. I don’t live in a very accessible town… I don’t really want to go and see a movie; that just doesn’t feel like “enough” of a thing to go and do… So, my point here is: Does anyone have any suggestions for what I could possibly go out and do? Just random local town suggestions… I like writing and reading and art and animals haha, if that helps spark anything…

Sorry if this is just… dumb. I probably won’t get a lot of answers anyway, I’m just… I want to do something. And I’d just like some suggestions… maybe some reassurance that it’ll get better someday, and I’ll be able to have a normal birthday again… I dunno’.

Thank you for reading :) and thank you for any suggestions

#spotty speaks #actually disabled #disabled #pots #postural orthostatic tachycardia syndrome #chronically ill #advice #disability advice #young disabled #disability #disability community #I’m just… lost. I want to feel like a kid and just…. have fun. and not be a burden on anybody #I’ve been sobbing for like the past 30 minutes as I write this ugh #like I said… any advice or suggestions would be good :) #disabled community #disabled advice #advice wanted #suggestions wanted

[rickypottsboyfriend]

anyone know how to convince my mom that using a wheelchair would benefit me ? ive used wheelchairs in public places before and i know that it will help me get out more and be in less pain . im scared to bring it up despite having valid reasonings for using one and having multiple places we could possibly get me one but the last few times i brought it up i started crying and i fucking hate crying in front of her

#disabled #disability #mobility aid #fibromyalgia #chronic pain #wheelchair #disability advice #disability aid #chronic disability #mobility aids user #mobility aids #mobility aid user #ambulatory mobility aid user

[monachopsis-11]

Question for my internet friends with orthostatic intolerance (especially POTS) I got a blood pulse oximeter to see if I had heart rate changes when sitting and standing and I’ve only had it for a day but I get dizzy sometimes after sitting or standing too long and I think I have ME/CFS which can cause OI.

Anyway what I’m wondering is if it’s normal for your heart rate to spike a lot after standing but then return to somewhat normal. Like if I have a resting heart rate of 82bpm that jumps to like 119bpm (sometimes higher) when standing up but goes back to like 96-105bpm by the time I’ve been standing for a minute is that normal because it goes back down or still really unusual. I’ve also never passed out but I get dizzy and lightheaded when I originally stand up and sometimes while walking or sitting.

I’m fully aware you all aren’t medical experts and I’m not taking this as medical advice, just trying to figure out whether I should be worried enough to research/ask a doctor.

If this isn’t normal should I be looking into POTS as well as ME/CFS?

#physically disabled #physical disability #chronic illness #orthostatic intolerance #pots #postural orthostatic tachycardia syndrome #me/cfs #disability advice #heart rate #poll #potsie #myalgic encephalomyelitis

[uncanny-tranny]

Definitely don't knock your device's accessibility options. I was looking through my phone's accessibility settings last night, and wow, it feels like technology has really advanced since I first got a smartphone.

I've even found a setting that raises certain sounds I apparently have trouble hearing, and it feels like I'm experiencing the music I love with a completely different perspective. It's honestly wild because my first smartphone had like... mono audio, and that was as close as you could get to accessibility

#disability #disability advice #like i'm not HoH as far as i know but i do have some differences with hearing #honestly my biggest issue is. i can barely differentiate where sound is coming from. i usually guess when i can't see a sound's origin lmao #which i don't think disables me but it is harder when i'm driving i've found #there have been a few times where i HEAR an ambulance but i have no clue where it's coming from. like none. #and like... you don't even have to be disabled to use those features on *your* device... #...it's just that for many disabled people they will be heavily invested in making their things accessible #so while i'm not unable to use my phone if that hearing booster wasn't in use it still enhances my experience 👍 #also live transcription???? that would NEVER have been an option with my first phone #i feel OLD (ish)

[spandexbutterfly4lyfe]

Good morning! If you have trouble getting the spoons to cook filling healthy meals (or wash the dishes that come with them) let me teach you my favorite breakfast! It’s sweet and delicious and is made of entirely prepackaged foods that you can buy in large quantities!

Ingredients:

Yogurt - can be plain, greek, or almond. I use the Walmart brand vanilla yogurt as it’s cheap and mild flavored, and it has a really smooth texture that’s good for my autism.

Granola - my favorite is Bear Naked cacao & cashew butter granola, which can be found at most stores, including Walmart and Target. It’s sweet and healthy :)

Almond slices (optional) - I use toasted but untoasted is fine too depending on the textures you like. These add a nice mild crunch. They can be substituted for other nuts but I believe the flavor of almonds specifically compliments the other ingredients.

Sweetened dried cranberries - I use the Walmart brand reduced sugar ones because they taste just as good and are for some reason really high in dietary fiber in comparison to the fully sweetened ones! The chewy texture really balances out the granola crunch.

And whatever kind of honey you like best :)

And you just mix ‘em together however you like! I use about 3-5 heaped spoons of yogurt, two fistfuls of granola (I have tiny hands tho), sprinkle of almonds, sprinkle of cranberries, and a generous drizzle of honey on top. You can add ground cinnamon too, if you like! Just be careful if you get overwhelmed by or feel sick from too much sugar.

This recipe is especially good because only the yogurt is semi-rapidly perishable and refrigerated. Almonds and cranberries and honey come in huge bulk amounts that’ll last you months pretty much, and the granola keeps a long time if stored properly. If time & energy & access to grocery store isn’t a problem, you can add grapes, sliced strawberries, and blueberries!

Nutritional breakdown for your convenience :)

Yogurt - the kind I use is low-fat, so it’s medium sugar content and some protein. As well as good vitamin A and calcium.

Granola - high unsaturated fat, which is really super good for you and necessary in your diet because your body can’t synthesize it! Also dietary fiber, low added sugar, and contains several minerals.

Almonds - also high unsaturated fat and dietary fiber! As well as good protein!

Cranberries - REALLY high dietary fiber, making this an excellent breakfast food. Definitely something you want to start your day with.

And honey’s kind of self explanatory, lol. IMO, it’s better to start the day with a dose of fructose than sucrose.

Important to note that if you’re a spoonie it’s best to rinse the bowl (if it’s a real dish and not paper) as soon as youre done eating, if possible, because the yogurt and honey can kinda dry on there and it’ll make dishes more work later. But if you rinse it while it’s still wet it comes right off, no hassle :)

I hope you enjoy ^-^

#nutrition #nutritional advice #healthy recipe #spoonie #easy recipes #disability advice #recipes #healthy breakfast

[youngpeachenthusiast]

i wish i could just get over the fear of judgement and use mobility aids in public. i swear i do try, but every time i feel like this is the time i actually take my cane outside i just... don't and i just push through and somehow make it through the day without.

i'm so tired of being in so much pain and so fatigued just because i'm afraid of accommodating myself :(

does anyone have any advice?

#elliot talks #chronic illness #chronic pain #chronically ill #joint pain #mobility aids #cane user #chronic fatigue #advice #disability advice #disabled #i'm the kind of human wreckage that you love

[tea-and-spoons]

Spoonie Life Tip #10

Emotional. Support. Stuffed. Animal(s).

#teaandspoons #chronic illness advice #disability #chronic illness #spoonie #disability advice #chronic pain #chronic fatigue #mental health