Quick Background: I have multiple disabilities. Physical, Sensory, Psychological, Etc. I have multiple medical devices; some of them are easy to spot and well-known to the public (prosthetic limb) and others that aren’t as obvious (feeding tube, CGM). I have multiple complex disabilities that sometimes require emergency care. When they do, it’s usually a life or death emergency where I lose any ability to advocate for myself. I recently have lost all spoken language and use a high AAC device. Even when I use it, my language/communication is difficult to understand. (My sister is helping me type this out).

I used to be super on top of emergency planning with my disabilities. I carried an updated medical folder with all my conditions, meds, and any other important information. I always wore a medical ID. I had a seatbelt cover that was clearly visible. The systems aren’t perfect and medical professionals weren’t always receptive to that information. Nothing on them. I understand that it can be diff to get information from someone who is…..to be blunt….. actively dying.

Since my disabilities have changed, specially my speech/language disorders, I feel completely lost on how to approach preparing for something like this.

This past weekend I had a medical emergency where I became unconscious and was grossly unprepared. I’ve been disabled my entire life, but more “severely” (not trying to rank disabilities, just trying to paint a picture of my own situation) for over 6 years. I didn’t have any info on me about what my baseline is. I was presumed incompetent *eye roll* by every medical provider, before they even attempted to get information from me once I was stable enough to be able to “speak” for myself. The entire thing was traumatic and a new type of traumatic, if that makes sense.

However, the communication/language/speech disability is something I’ve never dealt with and I’m beyond overwhelmed.

I’m really struggling and would love any and all advice/information/personal experiences/tips on how you prepare for emergencies if you’re disabled.

*Especially if you have complex disabilities that require frequent interactions with the healthcare system

I greatly appreciate any help you can give. I’m terrified, traumatized, and feel completely alone.

So I work as a bakery clerk/ decorator at Publix. Even with my sick days, work leaves me unable to walk when I get home. I use a cane at work but it's not enough support. I can't use my rollator because there isn't room, and the nature of the job doesn't allow for any aid other than my cane. I love my job, but I hate being in bed for days after.

For context, I have T1D, hEDS, MCAS, and POTS

I had to quit school because of my health, and all of the remote jobs I keep looking at require some sort of experience. My only skills are physical labor, but my body can't sustain that. I feel so stuck where I am. Bakeries aren't accessible to work in at all but I love what I do. I'm really upset that I can't do what I love without pain.

Is there anyone else that has gone through something like this? How did you find work? Are there any free certifications or something that I can do? I'm only 22, and I feel like I'm already destined to be destitute because of my illnesses. I'm okay with office jobs or remote work, I just want to be able to make money to pay for these dumb ailments I have and still have money for rent.

Asking for my mom, I’m trying to see if she can get extra on disability due to her state of wellness. She’s 44 and her motor functions are a little slow but not impossible or difficult, but thinking and processing tasks for her are a little harder for her. Has some memory issues pretty bad. This has caused difficulties for her previous employers for said issues. This is what she says she gets now, can she fight for more?

She gets %60 from the VA already. She’s had TBI’s while in the service, 2 of them. 1 from a head on collision car accident in 2001, 2nd got hit in the head with a utility box 2001-02, Honorable discharge in 2008 and was in the reserves till 2011. Next 2 were out of service in 2016 and 2017-18. She does work now full time for an in home health care provider and gets $42k a year.

Is there a possibility she could fight for more since she will 100% have a bad decline later in her life when she is older.

I'm disabled, live in a remote location with absolutely no amenities nearby such as shops or public transport. The village I love in is beautiful but I don't drive.

So, I can only get shopping in online. This is ridiculously expensive because I over order to avoid the basket charges.

I am on Universal Credit and Pip. Out of my money, 70% goes on general daily outgoings, rent, groceries, bills.

This month I am at breaking point. I have less than £40 to get groceries the rest of the month. It's not happening.

I applied for the Crisis Resilience Fund and they refused, basically saying I spent too much on peripherals and the like. I have to top up the wages for a Personal Assistant to assist me day to day and it's wiping me out. I can't even get to a food bank. I have been offered it but they don't deliver this far out.

I am so fucking pissed off with EVERYTHING being a fight. Disabled people face SO many barriers to get the things they NEED for survival. Wheelchairs, adaptations, travel. Living on welfare is no cakewalk. It is a constant battle from month to month, hoping you can stretch out those few quid a few more days.

It's nigh on impossible to get a job. Disabled people are like toxic waste. Noone wants to touch us to employ us. I understand. We are not as reliable as able bodied folk. But that leaves us in a perpetual cycle of poverty.

Disabled tax is a thing as well. Look up disability equipment and you will find items that are not specifically designed for disabled people with a huge increase in price. If you wanted a holiday, expect to add another 200% on top of that. But I haven't had a holiday in about 15 years anyway.

Trapped and broke. Suicide rates are high, and yet the government wants to REDUCE the amount of help we get.

The vast majority of us want to work. We want a job. We don't want to be stuck in poverty. But why is just access to basics ALWAYS a fight?

Ringing various agencies for help, you are conditioned to expect a 'no' straight away. I can't remember the last time I rang someone for help and they said "Yes, of course.".

I am sick of fighting at every single stage of life.

This is NOT living. This is surviving. Freezing cold in the winter, summer is just miserable. Stuck inside, everyone having a barbecue. Not me. Too poor.

Want to improve your health? There is. Medicine for that. But you can't have it because it costs too much. But. You CAN buy it privately!! Otherwise, just go off and die somewhere.

We shouldn't be a burden. We need to be given a chance. We want to stop hearing No all the time. We are people as well, we have needs.

My house has no drop kerb Infront of it. I have to lower the ramp of my wheelchair car, and then travel 200 yards from Infront of my house to the drop kerb at the junction of my road. When I asked the council of I could have one, before I finished they said "No. Not allowed." But it IS allowed. So, instead I have to jump through lots of hoops to FINALLY be told I CAN have one but need to install it myself.

Pissed off with loving in a ableist society that pretends to be disability focused, whilst simultaneously stripping away our dignity.

Disabled and alone is a terrifying place to be. No safety net at all,.living on the edge of a precipice.

I’ve been chronically ill most of my life and was diagnosed with fibromyalgia and HSD a couple years back. However, back in January, I had a random health flare where I started getting severe nerve pain, numbness, burning, and tingling in my legs and the left side of my body. My neurologist has been struggling to figure out what’s going on, but also unfortunately hasn’t been the most supportive recently and I am planning to get a second opinion.

I’m wondering if anyone has gone to any type of pain management specialist before having a concrete diagnosis? The pain has been unbearable and the medication I’m on isn’t really helping much. I’m just also unsure if this would be the right route to go without any specific diagnosis.

I’m a 29 year old male carer and my grandmother will be 90 this year. She had a severe stroke (1st and only) on July 12th 2024.

Before this, she could speak and do everything for herself but since the severe stroke, she has been bedridden and is not able to do anything for herself. Her speech has also be effected to the point where she’s not able to speak in full sentences as she did before. Her memory also varies as she’ll have good and bad days.

Please let me know and if possible, share any tips/knowledge you may have as I am the only carer for my grandmother and I have to do everything with no help at all.

i have DID, and i made a comment on a post stating that i appreciated the reveal of a certain popular tv show character having DID as well. basically being like, i really liked how this was executed, the actor himself is brilliant in his portrayal of DID. but like, im getting downvoted, and the only reason i can think of is because im a system.

ive got a laundry list of disabilities that i never see representation for. im excited about seeing a character with one of my disabilities, because it makes me feel seen and heard. im literally going to get my degree in digital cinematography because of this, i want to create interesting stories with accurate disability representation.

i feel like if you're the kind of person to find someone being appreciative of disability representation upsetting, you're also the same kind of person who gets mad when a disney princess isn't white. you'll never understand the feeling of being all alone, and the feeling being alleviated a little bit when you see that character in your show that shares the same experiences as you.

Early may of this year I got diagnosed with hypermobile eds by a genetics specialist who works with a lot of eds patients. She told me to talk to my doctor about medical marijuana because it’s what worked the most for most patients and I’ve already tried several other pain meds. I’m 19 and live in NY where you absolutely can get it under 21 so that parts not a problem but my mom is so extremely against the idea. When I told her she didn’t even want to hear it out she immediately just started ranting about “why would a doctor ever recommend that” and “you will not smoke in my house”. Obviously I have no intention of smoking flower in the house because of the smell I wouldn’t ask her to smell that all the time and I wouldn’t want to either. But she won’t even consider the idea or learn more about what it means (currently she thinks it means I would be fried out of my mind from sunrise to sunset even though I explained that the specialist recommended doing it at night after school). I have an appointment with a new rheumatologist and I’m going to ask about it but I know it’s literally pointless. It’s just killing me that she’s so willing to leave me with 0 pain management because of her ideas of weed when a LITERAL SPECIALIST is suggesting it. What kills me even more is that SHE IS A NURSE and her clinic PRESCRIBES MEDICAL MARIJUANA it’s not like she’s unaware of how it can be medically used. The difference is her clinic does treat the kind of conditions where people might use it from the moment they wake up (and most of her patients are retired so it doesn’t really matter as much for them) and she doesn’t think I’m “disabled” enough to deserve less conventional pain management. It’s kind of funny anyway cause I already do smoke, I started smoking weed regularly for pain about 2-3 years ago and I already smoke carts in the house that she has never smelled or found. But because I’m not 21 most of the stuff I can get is pretty sketchy and I’d love to be able to get stuff that I can know for certain is safe which I could do with a medical card. I’m still in college and have no means of moving out at the moment so now I’m just stuck knowing I could be getting proper pain management if she would listen to my doctors :/

I only recently became disabled. I use crutches for short distance walking and wheelchair for long distance.
I spend 99% of my time alone when I go out and I usually don’t talk to people. I enjoy blending into the background, ever since this happened to me… I can’t really avoid interaction. Everytime I go out somebody asks. Or people stare at me. Or I need help with something inaccessible.

I ALWAYS get questions anytime I’m in an uber. I really hate talking about it. I hate it so much and I know I can say no. But I don’t even like the question. I wish nobody would ask and I wish people wouldn’t gawk at me. I wish I didn’t need a ramp or extra help with everything I fucking hate it .

I know my life will never be the same, but I don’t want every single interaction and every part of my life to be defined by this unfortunate thing that happened to me :(
Does this happen ro anyone else? The stares and questions? I wanna know everybody’s stories lol.. I feel like knowing it’s not just me will make me feel better

I'm sorry if this is a dumb or insensitive question. My mom is recovering from a recent hip replacement surgery, and while it's less painful to walk than before she still can't walk for very long or very far. Unfortunately we have to go out tomorrow, no getting around it, and I was wondering if it was alright to use a handicapped space when parking. We don't have a disability placard since this is temporary and I don't want to look like an asshole.

You know what? I would also like to work full-time. But I can't! I don't have a CHOICE! YOU DO! And no, only working two days in a row is not """chill""", it's what keeps me outside a mental hospital! I AM DISABLED. I DON'T WORK PART TIME TO CHILL. I AM BARELY SURVIVING.

Basically what the title says. My parents ignore that I'm disabled, saying its what happened to them when they were younger even though they weren't in pain. My hip partially dislocates regularly and my parents dont care. The other day I moved my leg and it popped and then had pins and needles for like 2 seconds and they didnt care. Are they supposed to do this? I've asked for accommodations but they dont listen

I love it when I have able body people tell me. It must be nice to be disable. Not having to work, getting money for being disable. Like, it’s a lot of money in today’s world.

I am a person with mild to moderate cerebral palsy (GMFCS & MACS level 2). I currently treat with physical therapy, which I have done consistently my whole life, and occupational therapy as well as shoe inserts, toe spreaders and rest. I had botox and a round of intensive PT done when I was a little kid in the early 2000s but the botox didn't give enough benefits to be worth the risks of repeated anesthesia. If MUSE cells are found to have significant evidence of leading to improvements or develop into a partial cure but not a complete cure for cerebral palsy, I will take them eventually. I also have severe generalized anxiety disorder that I also find moderately disabling.

Despite the fact that I have better orthopedic health than people with my severity level of CP and that at the second lowest severity level I have it better than many people in the CP community, having cerebral palsy adds struggles to my life both because of the way my body interacts with inaccessible environments and an ableist, rigid, unsupportive society and because pain sucks balance issues are scary and overwhelming even with adaptations in place, which means I require medical supports like PT. Despite all this hardship both from society and my body, I experience this body as my neutral, familiar normal, since my CP is not severe and I have had it since at the latest a day after being born.

Once I decided to embrace this normal after making Autistic friends and reading the works of Georgia Vine (notsoterriblepalsy.com), Eli Clare, Alice Wong, Ashley Harris Whaley, Erin Kaye (Claiming Disability LLC), Shane Burcaw and watching Sarah Todd Hammer, Chelsea Bear and Cayetana Uranga of (@justcpnotspecial on Instagram and Youtube), I was introduced to a concept called Disabled Joy. In some cases, Disabled joy can refer to the idea that Disabled people's lives are not devoid of joy simply because we have disabilities. In other cases, it can refer to joy that comes specifically from experiences related to being disabled or to our disabilities. Keep in mind that this is not a celebration of our symptoms, but rather a celebration of things like small wins, such as doing a simple task on our own for the first time or figuring out an adaptive way to do an activity that was once impossible, the experience of finding relief from a symptom, or a celebration of being in community with disabled people or in a space where existing as a disabled person is celebrated. examples of this for me are spaces where the ways I adapt to make art, act, sing and play music are embraced as part of the creative process or the ways in which, at school for my degree in disability studies, the experience I have gained from being a kid with a disability and growing into a Disabled adult help shape my contributions to the class, the ways I live my daily life and the goals I have for my career. Another example for me is that I have made friends both through disability spaces and due to the fact that, since, sometimes I ask strangers for help with tasks like navigating a staircase or crowd, I have made friends like this, including my closest, most important friendship. My need for help also adds a closeness and tenderness to my most stable friendships that would not be there if I did not have CP. As such, I do believe that my cerebral palsy adds a significant amount of joy to my life and touches many parts of my life for the better, even if there are parts that suck (disabled joy and disabled grief can and do coexist for me).

The fact that this joy is important to me is my primary motivation for wishing for a "partial cure" that would reduce the severity of my CP without fully taking it away, but not for a complete cure, as the complete cure would take many aspects of disabled joy with it and that would make my life worse in my opinion, especially since celebrating the small wins and the ways I adapt helps me cope with my bad mental health days and my therapists have all said that my severe anxiety will probably never go into remission for more than a few months...

Despite how important disabled joy and celebrating neurodiversity is to me, I have repeatedly been told both by able-bodied people close to me, able-bodied people who read my blog, others with cerebral palsy and some of my Autistic friends that it is absurd that Disabled Joy is so important to me, because it is less valid to want to preserve a physical disability than it is to want to preserve a mental or sensory disability. I also experience a lot that people tell me that if I experience disability grief I must be lying about experiencing disabled joy and, conversely, that if I experience disabled joy my grief is not valid. I was most recently told by my mental health therapist that since I spoke about the fact that there are moments when I hate having cerebral palsy she "has caught me in a lie about experiencing disabled joy." So now I want to know: If you have cerebral palsy or another physical disability (especially if it is childhood onset): Do you experience Disabled Joy? And if you do, how important is it in your life? Important enough that it makes you stop fully hating being disabled or that it makes you not wish to be completely healed? Am I crazy for experiencing all these feelings?

I've been living with Sickle Cell all my life and I've been so confused as to why people aren't as aware of it. It feels like my own struggles aren't as recognized just because I got luckier with my case and can do some things normally, but still go through things like headaches, pain, crises and other things, and it causes me so many issues daily. Anyone feel like me with this?

I was looking through a post by a former SAHM who was talking about how due to being a stay at home mother she now does not receive enough money to live. Instead of empathy, many people were scolding her and defending the system, with some even saying that they didn't pay to subsidize people who chose to stay at home and raise their kids. They were saying she shouldn't feel entitled to a living wage because she didn't pay into it enough. This is incredibly toxic and not conductive at all to this forum. Thankfully, there were some actually helpful comments, but it was hard to see them while wading through judgement and nitpicking about her words.

I've seen these dreadful comments on almost every post where someone was terrified about their monthly pay and what they would do for housing and basic living. I'm not saying that we should lie about reality. Most people on SSI and SSDI have to leverage rapidly shrinking programs just to live in abject poverty, and many will become homeless as a result.

As someone who became disabled early and does not have enough credits for SSDI, knowing that is my future if I lose support from others or do not recover is terrifying. But seeing people in a disability forum defend these horrific policies is incredibly disheartening. Do better, people. Fix your hearts.

Edit: did you not see the part where I said "I'm not saying that we should lie about reality"? It is entirely fine to clarify those policies. Please get some reading comprehension. What it is not okay to do is to make statements that act like these policies are fair or reasonable, or act like someone is entitled because they'd like to not live the rest of their life in abject poverty due to becoming disabled at a young age or not having recent work credits. Please read up on the "Just World Fallacy" -- I think a lot of you are operating under this.

Edit 2: Holy shit some of you seem to not want to end disabled poverty, but avoid it yourselves.

hi everyone. im not sure how to navigate this so I’m coming for advice. my husband and I recently opened up a coffee shop, and one of our hires is a student who has a learning disability.

my brother has severe autism, and my husbands niece also has a learning disability, so I do admit that it was partially an emotional decision on our part. however during our soft opening we realized that the way we thought the coffee shop was going to be ran (more a sit down style) was not going to work. So we are now trying to figure out where to place him. We’re thinking as our pastry boy(like give pastries to our customers) or our bus boy. for anyone who has worked with someone with a learning disability or owns a restaurant with hires like him, is this a good idea? he’s super sweet, but when we had him try the cash register, he couldn’t deal with the volume, and most questions people asked he couldn’t hear them as well (that day we learned he also is a little hard of hearing) we are also thinking maybe as a dishwasher so he doesn’t have to interact with customers.. is there any other position he could be in?

Next month I will finally have an appointment for a consultative examination via telehealth. I have a bunch of disabilities, but my main qualification seems to be mental health.

I applied last year in October, I'd been fighting myself the last 10 years thinking I should work from home, but those jobs are dwindling and are far and few between especially now with ai.

I being true when I say I believe my ability to stop working started in 2017 that's when my anxiety and panic attacks got so bad I couldn't focus on college, couldn't even take the exams or go to school, stopped being able to leave the house to go shopping or drive my car because of it. So I just stayed inside where I knew I could relax the easiest if I did start to panic, at least I was home.

Without going into too much detail as it is very embarrassing for me and I still deal with this every day; I want to know if the DR who is doing my consultative examination will be able to determine when I became disabled / unable to work. I ask because I am hoping to get on SSDI, I think it pays more but could be wrong? I think I qualify for SSDI if my disability starts back then because while I have built some websites for people and made some reddit avatars through Reddit's collectible avatar program I haven't worked anywhere except online and it wasn't much in the last 10 years. The only reason I didn't apply sooner is I didn't really know this was a thing, but I'm very glad I found out.

Could you just let me know what you think about any of this. I feel very hopeful I will get on some type of support finally, and I was reading that SSDI requires some type of work up to when you became disabled, I think that would be 2017 tbh and I worked full time up until 2015 before I went back to college.

Thank you!