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.

Hi,

I'm not sure if there's a better place to post this but I am in desperate need of advice.

I'm 19, have EDS, and I've had four hip surgeries to correct hip dysplasia. Two of them were PAO (awful recovery but they usually help people a lot), and they never gave me any significant relief. After a couple of years of terrible pain, my doctors have decided to perform a femoral derotational osteotomy to correct femoral retroversion, a different congenital malformation.

I am so incredibly nervous. Surgery is in about a month and a half, and I don't know how to control my anxiety. This is a pretty rare condition, and surgery to fix it is even rarer, so there's very little information about it online. There aren't really any studies, the only hope I have is that my surgeon told me it would help. But my last surgeons told me it would help, so I'm having trouble believing him.

Every time I have to schedule appointments or prepare anything for this surgery, I feel nauseous. I keep remembering my last surgery, how I started sobbing as they wheeled me into the OR. I keep thinking about how I do not want this, about how bad it's going to hurt, about how bad it hurts right now. I don't want to get my hopes up too high that this surgery will help me, but I also don't know how to handle going into an incredibly painful surgery with a long recovery when honestly I think it'll be useless.

I am so tired and burnt out. I guess I just wanted to see if there was anyone out there who'd experienced this kind of thing, and if you had any advice at all for how to cope with it?

I don't know if it's allowed but I couldn't find another place. I'm technically homeless and I live with my partner who is disable. We live with their parents who as far as I know don't have a problem with me leaving here until I leave for work.

The thing is that although I understand that by being in a relationship with a person with disability comes with some things I needed to learn. Sometimes it feels like they don't see me as their kids partner but as a "retirement" plan. Like they say "let's train this idiot so we can die knowing our kid will be taken care off".

I've talked to my partner and they agree but at the same time we can't do much. It's not like we can just pack thinks and leave. That's the plan but it needs preparation.

I just got my first ever "review" letter issued for Medicare, and it scares me.

To the people who are saying we "were going to die 20% slower under Democrats", do you have any idea how insulting that is?

It's the exact same talk of "disabled people are just going to die anyway".

We aren't parasites. Our lives do matter. No, we aren't stealing from you either.

How come anyone who uses tax payer paid for roads aren't parasites? Or any other basic infrastructure?

Why is it stealing to keep us alive,but it's not when the military uses tax payer money to fund weapons of war?

You want to pay to protect yourselves from other countries, but won't pay to protect yourself when you or family become disabled.

If you call yourself pro life,then that includes keeping people alive. You can't force us into existence then push us into the streets.

You can't be a Christian, and not have empathy when it's inherently part of Christianity, and Jesus did say to pay your taxes."render under Caeser" , and no, it's exactly what he meant, that's not a mis interpretation.

You also can't then want the US to be a Christian nation when the church is supposed to take care of the needy,and of their own.

My life wasn't in danger under the Democrats, progress might have not been made, but I'd rather have stability than the end of civil rights, and programs that keep us alive.

The Democrats were never the ones who were threatening social security. They didn't threaten Medicare.

No disabled person should have voted for this. You don't vote for the people who hate you.

You are DEI. You are the inclusion, and equity. There are no exceptions. The only proof you need is that the word "disability" was banned from government use. Even though disability is part of the SSA.

Long post ahead, TL;DR at the end. So, I turned 31 recently, about a year after I quit the only job I’ve ever had once and for all. On and off since I turned 18 I’ve done various forms of online only sex work. It was difficult to stay consistent with, in recent years, and never made enough for me to live on my own (I lived with my mom until I married my husband in 2017). On top of just getting sick of it and the market becoming incredibly oversaturated I also came out as trans a few years ago, hence, the nail in that coffin—at least until I start HRT and get top surgery but God only knows when I’ll be able to do either of those things.

I felt like I was doing okay just being a homemaker over the last year but I’m becoming restless, bored and concerned about my Husband and I’s future. He does have a pension but obviously I don’t and we have no savings. He’s British and getting my visas to allow me to live with him was VERY expensive and we’re still paying that off as well as other things. It’s getting better, we’re not in dire straits or anything, far from it. He makes enough to support both of us but I know that must be so much pressure on him to be the sole bread winner. In the past when he’s been unable to work we had to rely on money from his dad.

Reasons why I am extremely hesitant to start applying for jobs:

·        Biggest one, I’m disabled. I was on disability benefits before I moved here for my ADHD, anxiety, depression, and (misdiagnosed) bipolar disorder. I wasn’t entitled to benefits on my previous visas, I *could* claim now but they literally just changed the rules for PIP, making me ineligible, and to be honest I would feel disingenuous applying for benefits. I’m doing much better now, I don’t struggle to get out of bed or take showers anymore but I do still class myself as disabled.

·        I have plantar fasciitis and standing for longer than an hour causes me severe pain. I have self-referred to podiatry to get more intense treatment for this. I know this is probably going to be my biggest impediment.

·        I have social anxiety/am recovering from agoraphobia and the idea of dealing with people on a daily basis makes me want to rip my skin off.

·        I have NO IDEA what to put on a CV. I graduated high school in America and that’s it. I have no other certifications. I know how to use Microsoft word. I used to spend my time drawing, writing novels and doing music production, ideally I would be a full time video game composer but the last 10 years of my life were spent battling mental illness and moving across the world so to build my portfolio back up would take a lot of time and money, hence the wanting a part time job to help pay towards that.

·        I can’t drive. I think it’s actually illegal for me anyway because I have poor eyesight and a lazy eye.

Thank you so much to anyone who replies to this.

TL;DR: ADHD, anxiety, agoraphobia, can’t drive, plantar fasciitis, only has experience doing online sex work, no college degree, what jobs should I be looking into?

I had a fall last year that has left me disabled. I'm a 55yo woman. I am more tired and in pain daily. I have been to physical therapy, had an MRI. I now get spine injections. I have made modifications to do simple daily tasks. But I can still do my WFH job. Should I bother to apply for disability at this time. I won't get benefits now. But if I lose my job.... Or Should I just document everything for the rest of my life until I no longer work?

Hello,

I know this kind of question has been asked before, but I felt the need to discuss it anyway. Basically like many people I have been looking to cosplay Viktor from Arcane, and I have concerns about doing it respectfully. I have been very much torn about how to do it right.

My concerns are mainly in regards to including his leg brace and/or cane/crutch in my cosplay or not.

From what I’ve gathered it’s a mixed bag, with some people saying as long as you don’t pretend to limp or be disabled it’s okay, and others saying (and that I completely side with) a disability is not a prop so it shouldn’t be done at all.

I am also worried about erasure if the mobility aid isn’t included, because Viktor is many things other than his disability but it does still play a big role in his story.

Moreover, on a personal level I am currently trying to process, in my 30s, the very recent diagnosis and recognition of several actual disabilities (which are able-bodied ones but have rendered me unable to work for six months), namely autism, ADHD, and Tourette’s (which has been plaguing me since childhood but was never named as such before - mainly humming and coughing for no reason) amongst other mental health struggles. In that regard I have been relating a lot to Viktor and the character is very dear to me, including the disability part even though my disabilities are absolutely not the same as mobility-related ones and I am very much aware of this.

This is making me lean towards the possibility of making the crutch and brace, from scratch so I don’t use actual mobility aids in the process, and so it’s clear it’s not a real one. I would not be putting weight on the crutch or pretending to be disabled, it’ll be carried. To be clear: I would not be using it walking, it’d be only for pictures I do not intend to post anywhere. The other option I am considering is cosplaying season 2 Viktor where he isn’t leaning on his staff as much.

I’ll also mention I have been having toe joint flare-ups for close to a year now which at worst had me in pain and limping, but I have yet to see a doctor about because I was afraid of being asked to stop putting weight on my foot (dumb, I know, but the mental health stuff is already a lot for me to process right now).

My aim here is not to “justify“ the making of the mobility aids in cosplay, it is only to know the opinion of other people, because being disabled but able-bodied has me worried I might make untrue assumptions and I desperately want to avoid this.

Sorry if this got a bit long, and many thanks in advance for any answers you might have! Thank you for your time.

EDIT: Thanks everyone for your input! This was very helpful. I think I will settle on making the costume based on the short span of time in the series where the character isn’t using the mobility aid and has body modifications instead which cannot be mistaken for a mobility aid.

Are there any programs similar to California’s In-Home Supportive Services Program (IHSS) in Tennessee wherein a parent can be the paid provider for their disabled adult child? TIA.

Just as the title suggests really. I'm starting to really struggle to type and it's driving me crazy, I hate having to type every word multiple times.

I only use an iPhone, and the "native" speech to text isn't great, it doesn't know a lot of words and sometimes it will put the name of some punctuation rather than the thing itself ("she cried comma a lot" rather than "she cried, a lot" or whatever).

Are there any other, better programs? If so, how much am I likely to have to spend?

Thanks for reading and for any help! 😊🙏🏻🌼

Me and my husband are on uc due to my husband being made redundant. We get child element as have 2 kids i also get carers allowance. I know I can earn £151 a week so was hoping to sell my homemade crafts that I do for a hobby. But uc say I would go down as self employed lose my carers and have to earn a min amount every month which I know I wouldn't reach. I know other people that sell crafts and also claim benefits and know they don't earn this min amount I was told so I don't understand why I do have to. All I'm trying to do is bring in a little bit of money to put towards birthday and Christmas as we aren't left with hardly anything after bills and food, till my husband is able to find a job (which is turning out to be harder than we thought).

So I need to take a mental health leave of absence. My job will pay me short term disability. The thing is, I own an editing business where I edit books for authors. I DO NOT plan on working the editing business or making ANY money from it whatsoever while I am on the leave of absence. I am scared that the STD people will have me fired if they know I have a side business. I am falling apart so bad so I really need to take the leave. I do not want to jeopardize my job for something that I do for fun and it doesn’t pay my bills. What do I do? Some places I searched says ti inactivate the EIN number or shut down the business. That’s fine but is that sufficient?

I work for a leave management company doing FMLA claims, not STD claims. This company will also manage my own leave. My friend said that she got fired a while back because the job found an old inactive business page. I’m freaking out

Hello everyone, I really need advice I have so many mixed emotions about this. Sorry if it’s long!

My brother is 26 years old and is severely autistic and can be unpredictably violent, and is currently under the care of my mother. My mother is older, partially disabled, but refuses to accept that she can no longer take care of him properly (and honestly never has). He is very strong (5’8, 200lbs) and the police have been called more times than I can count on him for baker acts (in FL, this is an involuntary 72hr psych hold). This has been a recurring thing since he was a child. Everyone around my mother, from police to social workers have explained to her the importance of him being placed. I have tried to help her with this process, but every time we make some traction in the process, she always backs out. She claims it’s because she cannot bare the thought of my brother being in a home, but I truly believe it’s for more selfish reasons. He gets checks that she is in charge of and spends recklessly, and she has said on more than one occasion that she “doesn’t want to be alone” (I no longer live in the home).

Due to my brother being violent, he poses a risk to not only himself, but everyone around him. I have been very hands off about this situation because APD had told me that I have no say in anything, even with the evidence I have brought to their attention. But recently it was brought to my attention that my brother was facing charges of domestic assault with a deadly weapon, which was a class 2 Felony. This stemmed from a situation that happened with my mother, where my brother in one of his violent fits and hit my mother over the head with a metal steak, causing a terribly laceration behind her ear and possible brains damage (she refused treatment but she has had memory problems and headaches ever since). The cops were called, and they ultimately pressed charges, that have now been dropped due to him being deemed incompetent to stand trial. You would think that this would have been the turning point for my mother to have him placed, and I was hoping that since the law was involved he would be as well, however he is still at home and my mother has made no efforts to try to do anything. I know that it’s only a matter of time before he either hurts/ kills someone or he himself gets harmed. I don’t want to see him go to prison or in a coffin.

For most reading this the answer is clear, but I am so torn. I am 29 years old, single no kids. Everyone around me is telling me to just let my mother and brother be, and whatever happens happens because I have done all I can do without getting the courts involved. I don’t want the worst to happen, and I know that if I do take this course it would be a battle and what is left of my relationship with my mom will be over. I am also worried about what she will do when she finds out (she also does not have legal guardianship but is considered his caregiver due to being his mother). I also feel partially selfish because I would be obtaining guardianship of him to uproot him from his current environment to put him in a group home where I know he will struggle for a while because I am also unable to care for him myself and am fearful of what he could do to me (he has chased me with bricks intending on throwing them at me, hit me, bit me, etc).

Any advice at all would be greatly appreciated. Thank you!

So I got a call from SSA on 4/2 saying I was approved but then I got an email notification saying SSI denied me on 4/10, mind you it's not yet 4/10?? Does this mean I was approved for SSDI as there's no update online and I haven't gotten a letter from them? It's been 5 long years and I'm so confused and feeling anxious. Anyone have any idea?

I just want to know the exact diagnosis! I’ve waited 25 years for a cure that’ll never exist so is a diagnose too much to ask for? I hate that no one ever listened when I was younger so it never got looked at by a doctor or anyone. No one believed me, no one listened and they all blamed, gaslit and ignored me over it. I know it’s there. I know my mind and body well enough to know it’s more than people treat it like it is. I’ve dealt with this unknown disability my entire life.

It’s insane to me that my worst disability is the one no one ever took me seriously on… especially when it’s impacting my memory, thought patterns and capabilities, hallucinations that get worse under stress, my ability to separate old memories and put them on a correct timeline, etc. I have to fight my own brain every single day. Can 1 doctor please listen to me? I’m terrified of losing the independence I fought for one day because what if it gets worse out of nowhere?? I NEED to know what happened to my brain sometime between my birth complications and 3 years old! (When symptoms started)

Idc if there’s a treatment anymore… I just want the truth. I’d do ANYTHING for the truth.

Yet somehow part of is still holding on to the possibility of a brain surgery that can help me someday… even if it had a 99% mortality rate I’d take it. It’s strange because most of me is so exhausted I don’t care anymore but part of holds on to that little false hope just to keep fighting. There are fates worse than death; I am living one.

(If this is in the wrong spot, tell me) I (17F) struggle with mobility issues. I can't walk very far without being in pain, i live most of my life in pain in fact. I was reading about mobility aids and it made me want to try one, so I borrowed my friends cane for a little and it really helped. However, I brought it up to my mom she laughed it off, told me to lose weight, and to not mention it again. I don't know what to do.

Edit: I know I need to see a doctor about this, I just suck at self advocating, and I need a new PCP 🙃

I'm writing a story where the main character is an amputee who's missing her left arm. Partway through the story, she makes friends with a slime creature that can shapeshift into an arm shape and attach itself to her. It allows her to have two arms functionally whenever she needs it, but it's still a separate creature that she needs to give verbal instructions to rather than being the same as her flesh arm. It also detaches itself from her to sleep or rest.

I figure it wouldn't be too different from a prosthetic, although I'm still concerned I might be suggesting that a person with a disability would need to be "cured." Should I go from a different angle?

Hello,

I am 22 and disabled due to psychiatric issues. The most disabling are agoraphobia, bipolar 1, PTSD, and panic disorder; though I also have ADHD and autism.

I can leave the house with a safe person, but never alone, and am well medicated for the bipolar but still occasionally have manic episodes where I experience hallucinations. I struggle with basic self-care frequently, and put all my energy into being a "homemaker". There are times where I can't do the dishes for a week, or go 4 days without showering, etc. This is actually well functioning for me, I have come a very long way and yet before this dilemma my treatment team suggested a psychiatric service dog as a last resort for my agoraphobia. While I struggle, I feel I am functioning enough to do more than I am.

I have not had a job since becoming medicated, but pre-medication I tried a bunch of different things and found a passion for emergency medicine. I was able to, with the help of my ex and my therapist, go through school and complete it before a bunch of shit went down.

Cut to now. I have an interview for a program that will pay for me to go to EMT school again and offer me an instant job once I obtain my license. This career is the only one I can see myself doing, and now that I am much healthier, I want to give it a shot.

However, I am afraid I will fail and lose my benefits (SSI/SSDI/state insurance/SNAP). I decided I will go to the interview and attempt school if they approve of me, but I feel in my heart I will never be able to work a normal job due to my disabilities. My plan is to go as far as I can, and once I start actual work do part-time to not lose benefits at first, then if I can, go fulltime and eventually lose benefits.

I don't know, I am very confused and concerned but I won't get this opportunity in this state again.

Thinking about a child's mobility scooter! I' petite. 5'O, 110 lbs...I can very rarely ever ever ever attend any kind of social function due to my mobility issues. I have found, through trial and error, a cane that helps me for doctor appointments. I'm never standing for very long then, I know the "terrain", it's lightweight and portable, only useful briefly because my upper body weakness, pain, hand and arm arthritis and tremors... Etc. please don't ask my questions about why I am left to my own devices to figure out... Devices... Basic healthcare failing me. So skip that. At one point I ordered ...after a lot of research... what seemed to be the most lightweight and portable travel scooter, and I could not even get it out of the box. I live alone, I chose to leave my fiance, abusive and financially dependent, took two years to get out and now I am free yay boy oops nobody within 30 minutes. That people I know 30 minutes away offer zero help, outside of the financial which I am very lucky to have that support as a 49-year-old adult. I'm not going to say they are my parents but hypothetically there are my very loving parents. I have always relied on a boyfriend, as long as I have someone to do my heavy lifting, carry stuff, etc. Yup! I never purposely went into a relationship with that in mind, but now being single and very isolated for 2 years, I realize why this mobility issue did not prevent me 100% from socializing before, it was diminished but still able to get out of the house for fresh air and other human faces. There are a handful of steps into my house. I would have to keep something like a travel scooter or a wheelchair, whatever, outside. A walker barely fits inside my home. I know how to get around inside my home without a mobility device, it's when I want to go to a place where I don't know how long I will be standing and how long the function is. Such as a very special "celebration of life" tomorrow at a park. Don't forget my upper body weakness is hard for me to hold something, already having my purse. Oh I'm 49 and looking fine and people just don't believe me which includes my doctors that I can't walk more than 15 ft without needing to sit, for various reasons..If I had it my way I would strap a chair to my ass but I haven't figured that one out, yet! Health insurance provides my rides for me so they would load and unload the mobility device but that's only for doctor appointments. I have a part-time IHSS caregiver but there is never enough time for them to even do the minimum, and it's not their job to drive me to social functions, anyway. Nope, I do not have any friends or family within 30 minutes and yeah 30 minutes away I have immediate family that just simply shrugs and says okay, when I say I can't attend something, such as a funeral or a wedding "because I can't do the standing and walking required in that kind of situation", that is bigger than something like a small local restaurant where I'm dropped off right at the front door. You know what I mean??? Back to my question. If I have somebody who will load unload a mobility scooter for me, maybe I can keep it outside under my carport. it's a safe community, I really don't see any other choice and then blocking the walkway but anyway... I guess I'm just asking for recommendations on the most lightweight mobility scooter and affordable. Maybe I can do a child's??? Oh yeah, I'm super poor, living pretty spoiled for someone on SSI in LA! But I would like to not think of my home as an escape room! Most of the time it is my playground and I am happy here. There has got to be a way. Oh and there is the little part of since I can ever attend a family function nobody has ever seen me even with a king so that's a bit of anxiety showing up like that but at the same time I think it's something they need to see to really understand the reality of my situation. Might not change anything in the way they treat me but... Back to lightweight mobility scooters! If it's something that needs to be charged I have an outdoor plug, is the cardboard covering over the driveway attached to the house and you know I can get a waterproof cover like that for motorcycles I don't know...I don't know... advice ???😆 Thank you so much. ❤️❤️❤️❤️❤️

My life just seems to keep getting worse i cant ever hold a job due to my disability i dont even know what to do i did get a job but im behind on rent and am probably gonna lose this next job due to being out of shape since ive been looking for work for so long.. life is tough

when people are denying you access somewhere, or casually joking about your disability in a way to demean you, how on earth are you supposed to call it out while maintaining a clear, level head and still get what you want, whether that be access or them to knock it off??

i'm trying to navigate this but i'm afraid of messing up and making things worse. a few years ago i was denied entrance to a club because the bouncer thought i was "drunk", despite me being the only one in my group (half of who had already been let in) who had in fact *not* been drinking alcohol and the "drunkenness" he saw was just classic balance and mobility problems that were made 10x worse from walking halfway across the city in the middle of the night,, i tried to over and over to explain, as did my friends, but he was adamant i was drunk so i swore at him under my breath and we all left the area pretty soon after that. i still feel terrible about it somehow even though he was, objectively, being ableist BUT i feel like i could've handled it better and been allowed into the club as well (and made my friend's birthday less awkward lmao).

could i have sorted this out differently, with a firmer more logical attitude? or like. should i have had a card saying i had mobility issues?? or was this just a totally unwinnable battle idk. if a situation like this crops up again in future what's the most optimal way it can work out with as little stress as possible?

I'm trying not to bum too hard today. Anniversaries suck. I spent the first year just surviving I guess. This last year has been driving all sorts of therapies in. Because I'm told I can "get better" 🙄

In the beginning I had everyone telling me bullshit about hope and focusing on the things I can do and will do. When I get better.

2 years in, I've done literally everything I was told to. Problem is, all the suggestions come from people who had a different perspective on my disability. Like that I'm not actually disabled.

Being disabled this long has allowed people to give up their stupid expectations of me. Because if you're not trying, you're giving up. 🙄

2 years, 7 hours of various therapy a week.

Still in a wheelchair And that just BLOWS MY MIND. Not that I'm not enjoying the experience (🤣) but wow.

It's been an absolutely amazing experience. Just dumbfounding. Hilarious. Confusing.

2 years on the couch.