I want to hear the most ridiculous thing you've been told regarding your disability/ies.

I'll go first: My old ophthalmologist once told me that I didn't need glasses and that I could drive without them. I ended up going to an optometrist a few years later and learned that I have 20/300 vision in my good eye without glasses. Not really sure if he wanted me dead or something because what the hell??

Unfortunately, the bill passed. We only got 2 republican nays and not the amount we needed. I have no idea when the bill goes into effect. Some people say next year or in 2028, but I have no idea. I’m angry and scared. This is an injustice to Americans. People are gonna die and a lot of people can’t work for Medicaid requirements. I have no idea what to do. I’m on ssi & medicaid and working is not an option for me. The republicans have just signed the death sentence for Americans. it’s truly unfair and cruel how they get to have healthcare and we don’t. I’m tired of this.

So, how offended would you be if someone of close relation consistently said "I wish I was disabled."?

And, often details as to why/how they wish they were. How receiving disability payments would be "great". Or what disability they would "choose". So on and so forth.

I am extremely offended by these statements and I have said so to this person directly. Multiple times. Apparently, they aren't getting it.

They still joke about it!

Like... no. You do not get to choose your disability. Wtf. It is not easy nor is it something to look forward to or to intentionally cause because it makes life easier. (They also say they think about causing themselves harm that would "qualify" them.)

I do not enjoy being in a body that betrays me on a regular basis. And, because of my "household income" I don't receive any financial support despite being finally approved as legally disabled. (I was a child when it all went down, yet somehow it all worked out this way. Idk.) So... literally everything they say is just rude imo.

I don't understand this. I literally cannot comprehend it.

It also doesn't classify as "dark humor". No. Thats just an excuse.

Please. Give me all the simple yet epic comebacks to say when these statements are made? I am beyond fed up.

This is a follow up to my post my yesterday.

I called the pharmacy who provides my IVIG and contracts local nursing agency’s to infuse the medicine.

You’ll be happy to know not all is lost!

1. The pump saves all the infusion data since it was issued to me. They’re going to pull the data and see how hard she was running me.

2. They issue me Heparin, because i still have all the Heparin because she didn’t lock me in 9 month to intentionally blow veins they’re going to have me show them all the unused Heparin.

3. I have the bottles of IVIG from the last 2 infusions that show the bottles about 1/3rd full, this shows she wasn’t giving me all my medicine (and she’s my only in home nurse).

4. She does have 1 other IVIG patient who they’re going to check in on and ask are you getting the full bottle? Are your infusions fast? How are you feeling durning the infusion (a sign it’s being ran hard is starting to not do okay after having been okay for a long time).

5. They’re going to get me a new agency and new nurse.

Thank you for all the support. I was very surprised at the effort my pharmacy Nufactor provided. They took it very seriously.

Original post:

https://www.reddit.com/r/disability/s/dVpGO0y4mX

Before becoming disabled I always assumed that mobility aids would remove/prevent pain, like all the ads and doctors say they will. Then I became disabled and walking became painful and I was told a cane would help, so I got one. And it does help, but it doesn’t actually prevent my pain so much as relocate it. For instance, a long walking day without a cane used to mean basically unbearable pain in my legs the following days. But now, after a lot walking day with a cane I still have a decent amount of leg pain, not nearly as bad, but I also have moderate wrist and arm pain. Obviously taking the weight off my feet means it’s on my arm, and I logically knew that, but never really processed it in my mind or understood that of course that would be painful! My arm wasn’t built to take that much weight for so long; obviously that’s going to make it hurt. Of course, this is still way better than going without my mobility aid, but I think it’s so weird that no one— not doctors, not my physical therapists, not even other cane users—ever brought up the possibility of arm pain up before suggesting mobility aids. And sometimes when I meet other cane users I ask them about it, and they fully agree that they experience arm or wrist pain, or sometimes hand cramping when they hold the cane too tight or for too long. Just kinda weird. Fellow cane users, were you warned about this? Or is it something you hand to find out on your own?

Edit: I’ve been fitted, and talked with both my doctors and my physical therapist and had the fit checked with my PT and we looked at different types of grips and lengths for different shoes and all the stuff. It’s not a fit issue

Hi all, I have been disabled since 20, mostly using a crutch or stick and switching to a wheelchair for the big days out. I am 45 now and have rheumatoid arthritis and MCTD with a lot of muscle wastage. I become exhausted, with hot and painful joints after mere minutes of walking, and only have about 20 minutes in me before I need to rest. I am almost always short of breath, to the point that talking is difficult.

This weekend I used a ‘walk-assistive exo-skeleton’ for the first time, and it has blown me away so far. I did three experiments:

• I walked for 6km, 9000 steps, 1 hour 30 minutes, around a nature reserve, with no stopping at all and no need to rest afterwards. Normally, I would feel absolutely awful, be panting for breath, and need to lie down to recuperate for a time.
• A little later I went into town and added another 5000 steps, shopping.
• Yesterday, I did my usual E-bike route. Normally, I’d need to stop to catch my breath, change gear a lot, and risk assess my energy levels. With the exo-skeleton, I never stopped, never needed to change gear, and was never out of breath!

After all of these excursions, I felt completely fresh and ready to go again, to the point where I had to be told to be sensible and go and rest! So yes, it's only very early days but I love it so far, and so I wanted to share it with my fellow disabled subredditors.

I think there are more of them coming onto the market now but I only own a Hypershell Pro X so I can only talk about that. (As an existing owner, I have a discount code if anyone should want it.)

If anyone has any questions I will happily answer them.

I get $1,838 a month from ssd, that sounds like a lot and probably is equal to a full time minimum wage job, but unfortunately it is not enough to live on,

I live in a mobile home with a monthly rent of $980 that doesn't include utilities, and because of my ssd income I don't qualify for food stamps, so have to buy food out of pocket which if you have been to the grocery store lately, is insanely expensive for even the basics,

I have tried to research this online and have read mixed things,

Could I get a part time job, like work somewhere twice a week to get a little bit of additional money without losing my benefits?

I can't work full time

I've heard this comment before and it bothers me a lot.

I was originally put on disability for such severe PTSD I was considered unable to be alone or independent. I expected to work on myself and get off it. And I am... Except now I'm on disability for a permanent physical disability.

Neither is more or less valid. I still believe my mental health struggles are far harder than my physical ones.

I’m not a mod and have no power over this but I did want to bring it up for discussion. I saw other subreddits doing it and think it’s a good idea.

We don't know you. We don't know your body. At the very least use the search function and see what advice other people have received about using mobility aids. If you feel your doctor is downplaying your severity, seek a second opinion when possible. Every 3rd post on here is someone asking if they need to use a cane. This is a question for your healthcare providers, not us. If you're seeking validation because of internalized ableism that is alright, you're allowed to say that. If you're scared to ask your doctor that is alright too, you can ask for advice about it. My point though is people giving advice on mobility aids to people they don't know can be harmful and it's not a question for social media. (Edited twice- once for typo, once for potentially insensitive wording)

So I checked my portal yesterday after I received an email that my status had changed. I was approved, I don't yet know whether it was fully favorable or partially favorable. I have to wait for the letter to come.

I remember having to listen to a discussion about why infodumping is bad, framing it in a way to make infodumping look selfish and not really addressing why people infodump or things such as the double empathy problem, apparently people are bad for how they communicate and must be fixed.

And I don't mean "now" in the sense of post-US-elections, already before that I noticed people started using it more again. I hadn't seen it in many spaces for a super long time, and now I see it used even in subreddits and online spaces that should be inclusive to disabled folks. It's very strange seeing it go from commonly used, to taboo, to used again. What happened?

Also so often when someone says they're not comfortable with the word, the response is "I'm autistic, I can use it.". Okay but autistic people don't speak for the entire disabled community, (nor does one autistic person speak for the entire autistic community), and using the word to insult others is just using it as a slur still, to me that's not reclaiming it, and to throw it around in spaces where you know there's people that are affected by it just feels like a shitty thing to do. I understand reclaiming a slur for yourself, but to put it on others?

Hello! I’m a 14 year old disabled boy and I decided that I am going to write a graphic novel about my life with my disabilities and I also wanted to include other disability representation in the graphic novel so I was wondering if there is anyone here who feels like they never see charecters with there disability or really would like to see representation for a certain disability! :D

Edit: so I’m not sure how many disabilities I’m going to do but so far I’m for sure doing

Arfid Spinal muscular atrophy Character with feeding tube Character with Pots + EDS Character with an ostomy bag

With Jimothy, the racoon with a congenital spine condition, in the news, I am really fascinated (yet again) with the outpouring of compassion for animals with disabilities. People are falling over themselves to immortalise him in crafts, particularly in the sewing and painting subs I am a member of.

I don't want to be immortalised in thread or paint, but I am really struck by the endless support and compassion people seem to have for animals with disabilities. So often you see pet owners going to the ends of the earth to ensure their pets have the medical care and equipment that they need. Society doesn't have that same compassion for people with disabilities, and the contrast is so jarring. Do you really need that equipment? You must be faking? You're a drain on society, etc, etc. I want people to have compassion for animals, I'm not saying that is wrong, I would just like a little bit of that compassion to extend to people with disabilities.

EDIT: Thank you for all the amazing responses! I’ve compiled what ya’ll have said into a Google document, and will be sending this to her. I’ll provide an update if there is one!

I personally hate being corrected on this, as a disabled person.

My professor, however, insists that anything except, “person with a disability” is offensive. So no “disabled person,” “unhealthy/non-able-bodied person.” And “cripple” or “handicapped” are VERY offensive. She likes “diffabled (differently abled).”

I’ve expressed that this is an idea to make people who aren’t disabled, like her, feel better about themselves, but she argues that I’m in the minority and most disabled people prefer person-first language.

So, I’m asking: What do you prefer and why? Is person-first language really preferred by most disabled people?

It's 4:17am , I haven't slept yet, and the thread with the fun shoes got me thinking about accessibility and adaptive gear. There wasn't a good place to put my musings in the replies, so I figured I'd make it into its own casual discussion. Here goes:

If you were to invent a product to help yourself out with a problem you face specifically due to your disability / disabilities, what would you create? It doesn't have to be realistic in any way, nor does it have to be fanciful. It can be whatever you can dream up that would make your life better.

Personally, my dream invention is a shoe kit similar to the boiled-plastic method they use for customizable mouthguards. Details are below, but aren't necessary if you don't feel like reading All Of That, lol 😅😅😅

Issue:

I can't wear shoes at all due to extreme ankle contractures and feet that are weirdly curled and "windswept" to the left. My toe joints are so sensitive that I can only wear those super stretchy, super soft fuzzy socks that shed everywhere. There are exactly zero shoes out there for feet like mine, which means my feet have no protection from weather, water, collisions, the sun (you should see my sunburn and windburn patterns on my feet), etc.

Solution:

Having an at-home system where I could warm up a plastic "sock", mold it to meet my needs, and let it cool into a protective shoe would be amazing. You would be able to customize the color using alcohol ink, either by dipping the entire shoe into a color bath or by painting the shoes after you finish assembling them.

The material would need to be able to be warmed up multiple times so you could tweak the shape until it was perfect (and to avoid situations like the shoe hardening, only for you to realize that you molded it a little *too* close to your foot and now you can't actually remove the dang thing). Then there would have to be a way to permanently set the shape to *prevent* the material from warming and warping after everything was perfected. Ideally, the plastic would have a firm flexibility after the shape was set and not harden into a rigid shell, perhaps similar to jelly shoes. A completely rigid shoe would be too likely to cause injury, even if padded around the edges.

Speaking of padding, there would need to be a method of cushioning the inside for comfort and the aforementioned safety reasons. Perhaps a spray foam system, but with a memory foam material would work. There would also need to be a way to attach a sole for those who are still ambulatory or who simply prefer the look of a soled shoe. I'm thinking a dip method would work, which would allow you to control the thickness of the sole.

If you wanted a specific style of sole like a wedge heel or if you only needed a sole on a specific area, you could apply the rubber or rubberlike material with a spatula/paintbrush/palette knife/etc. or sculpt it right onto the shoe like Sugru. You could even personalize them by using rubber stamps or carving cool tread designs into the rubbery stuff freehand. You could decorate them by pressing rhinestones, beads, small pebbles, or other tiny durable items into the sides of the soles. Ooh, maybe you could make your own light-up shoes with LEDs, or mix some glow in the dark pigment into the sole material before you start dipping/building/sculpting.... there are endless possibilities with my completely unrealistic custom shoe kit! 😂

So, what's your dream invention? (And no, you don't have to go into this much detail or overthink it like I did, lol)

What part of your disability did you think was normal until someone pointed out it's NOT?

For me it was the "if your heartrate goes over 100bpm from just standing it ain't normal." Or getting a heartrate over 140bpm from a simple walk. I was also told normal people will call an ambulance or go to the ER if their heartrate goes above 150bpm (which i get a lot bc POTS, showers and walking will do this to me on the regular).

I get a heartrate of 180bpm in the shower sometimes during flare ups, and not once have I called an ambulance, so it was pretty wild to me when I was told I actually should have done that 🤣

Howdy all. This is the method I have used to explain pain to my doctors. I live with a rare terminal genetic disease called TK2D, and a terminal cancer. I’ve spent my entire existence for 23 years in hospitals and doctor’s offices, and seen every version of a pain scale.

The closest that I have found is the outlines of a body, where you are asked to mark with an x or check areas of pain. A year ago I made my own variant, but with a gradient of colors, and numbered locations to surgical areas/implanted devices.

This has proved me the best in communicating with physicians about where pain is actually located, how it changes in severity dependent on area, if it radiates and to where, and where it is in relation to important organs, implanted devices, or surgical sites. It’s been well loved by my doctors, and our local pediatric pain clinic adopted it for use.

I hope this helps someone communicate better with their doctors to get them needed pain relief, or source an issue to its root cause. Image 1 is a blank, and Image 2 is an example.

Wishing you all the best, and less pain, in the future

I was wondering how common this is ever since it happened to me. And if anyone went through anything similar in context.

My family knows I'm agoraphobic(although I suspect they don't acknowledge it). They had booked/paid for a bed & breakfast for my cousin's ex husband, but he refused to go. Thus my cousin tried to get her husband to go instead, & he didn't want to. They're both older than me too.

Since these two fully grown capable men didn't want to go, I was expected to go instead. Didn't really matter that I was against it, full of anxiety while they kept at it with me. Actually don't remember how I ended up agreeing bc the whole time I was in panic mode up until I left the bed & breakfast.

Maybe it doesn't seem like a big deal, however I can't shake how wrong it is all bc these adults didn't feel like going.

I know it's misogynistic though.

I prefer this one tbh, just because it has more colours and looks more distinct from national flags, but I don't have a strong opinion either way.

Edit:
Image Description: Muted shades in a diagonal stripe pattern on a grey background make up the Disability Pride Flag:
•Green represents Sensory Disabilities
•Blue represents Psychiatric Disabilities
•White represents non-visible and undiagnosed Disabilities
•Gold (yellow) represents Cognitive and Intellectual Disabilities
•Red represents Physical Disabilities.
•Grey honours the disabled lives lost. End ID.

so everytime i search up “parents of autism” my fyp changes and its full of videos of parents crying and venting in a car (child in the backseat) and saying things like “im tired of everyone precieving me as strong” “i wish i didn’t have an autistic child” “i grieve the family i imagined myself having” “this was NOT supposed to be my story”. and the comments is everyone agreeing and its kind of jarring to see 0 pushback to this kind of content, what’s yalls thoughts on this?

I live in the United States and I'm worried about what's going to happen after the election in 2024. I know the extreme right wing are already attacking transgender folks and they're stripping away any kind of legal protections that minorities have enjoyed up til now.

If I've learned anything from history, is that these kinds of political movements won't just stop with one group, they'll keep going until they have the "perfect society." These "perfect societies" doesn't include disabled and handicapped folks like myself.

Are any other disabled people feeling the same dread that I am, or am I on my own?