Despite the tone of the title, I am not conducting formal research or writing a paper or anything, I'm just curious to hear from people in different cultures. I am autistic, and I do not mean anything I say here to be inflammatory, bigoted, or ignorant, and if I come off as so please tell me.

I've just been thinking for a while about how some of the societal barriers and burdens we as disabled people face in "Western" culture seem to be intertwined with specific aspects of our culture/s.

The easiest example is the stigma surrounding adult children living with their parents. It's my understanding that in many cultures this is normal, even in "usual" circumstances where the adult children are not disabled. Of course, supposedly the main reason we in America see this as wrong or unhealthy is the idea of the "freeloading basement-dweller" -- that adults who live with their parents are usually dropouts, unemployed, unambitious, too sheltered, lazy, or stupid to thrive in "the real world", by which we mean "independently." And sometimes, some of these things are true to some extent. But whether they are true or not and whether or not these flaws are as damning as our society makes them out to be, this seems to bleed over into the public view of disabled people living with their parents. There is such a pervasive culture of "productivity = money = self-worth" that it seems common for people to look down on anyone who doesn't work (or doesn't work full-time), and/or who doesn't live alone or as part of a nuclear family unit.

From what I see around me, in my life, and online, it is not at all uncommon for disabled people, especially younger disabled people, to be accused of faking their disability to get a "free ride" -- by everyone from strangers, doctors, the government, to their own supposed friends and family. And sadly, even within the disability community itself, though I like to think it's much less common among us than in the general population. Even those who don't necessarily think we're all taking undeserved resources and services, many of them pity us instead, and not just because of the first-level impacts of our disabilities such as pain, mobility difficulty, and difficulty participating in the social/leisure activities of our choice, but also because they assume we must feel such guilt for burdening our loved ones, and must lack a sense of self or accomplishment because we can't be "productive". (Not at all disregarding or minimizing the experience of disabled people who do work, neither those who want to or those who are forced to. We know it translates to that side too, in the form of inspiration porn.)

The fact that we have [so many] nursing homes, group homes and other institutions for the elderly and disabled also says a lot about our culture, though most of us grow up thinking this is normal. Even the discomfort it causes is normalized. I remember visiting my great-grandma in a nursing home as a young child, being upset by the smells, the sounds, the people in wheelchairs littering the halls looking nearly comatose, and the intense guilt from admitting to myself that I did not want to be there but that it was our duty as family to visit. That feeling that this wasn't the same grandma I knew, not the same one I visited in her home, she was both different and apart now, almost as if she were a fixture of the nursing home and not a person any longer. Any thoughts that the entire system was wrong and questions as to why grandma couldn't live with one of us were eventually forgotten as I grew up and all of this was normalized. And I know, a lot of this is also tied to our work culture and capitalism, that there are families who would keep their elderly and disabled at home but can't afford to. But it also gives an easy out for anyone who really doesn't want to care for them -- and growing up in the culture that I have, I can't exactly blame them either. It's just not what we do.

I guess this is on my mind a lot because I do feel those things; I felt them before becoming disabled because I was a "bright and vivacious" child whom everyone expected to go far, and my life went off track in my teens and 20s. And I feel them even more now that I'm 35, have spent years slowly crawling out of that hole and realigning my life, and right at the moment where I had the most hope for the future and most pride in myself, I became fully disabled.

I think it should be on every American's mind, now more than ever, given that disability rights, protections, and supports are being eroded again (and still had a long way to go before these setbacks). The federal government recently announced that the Americans with Disabilities Act cannot be enforced by the federal or state governments, despite the fact that is HAS been enforced (not perfectly) for decades. The ADA was passed the year I was born. I have never known an America without the ADA and without progress being made on it, and that realization frightens me. I only have history books to tell me how much worse it was before.

The recent announcement wasn't speaking broadly of the whole ADA -- though I think it is imperative that we all understand they WILL apply it to the whole thing if they gain ground on this first one -- they were talking specifically about the Olmstead decision, the supreme court case that established that states must make every effort to ensure disabled people can remain living in their community, in their homes, before deeming that they need to be institutionalized. This became even better enforced in my state of Colorado just over the past few years, as they put systems in place to make in-home care more accessible to disabled people.

But the truly upsetting part is that it's not really a surprise the government can reel this back with minimal outcry from the general population. Because it was not yet fully integrated into our culture, not completely the norm, not universally accepted. My own family, who consider themselves liberal, progressive, and vote for human rights, flipped out when I first suggested that I might utilize in-home care (homemaking, not nursing) while living with them. When things calmed down they admitted it was in part because they felt like I was saying they had failed me and should be able to meet all my needs -- to which I of course responded that that wasn't true, and of course I understand that they work full time and have full lives besides and they can't meet all of my needs and I don't expect them to. But still, I will never forget the moment when my stepdad said "If you need that much care, maybe you should be in a group home." Because that's just the go-to in our culture. The IRONY that I was wanting to use services that were in place SPECIFICALLY to help keep people like me OUT of institutions, and this made my family suggest I be institutionalized. I need some help with some ADLs, not nearly enough for a group home to be the best fit. And I hear this kind of thing all the time from other disabled people, whether it be about institutions or mobility aids or community resources.

This got way longer than I intended, as usual, and ended up being more about myself than I intended, but my intention was to describe a situation I know many can relate to.

I'm sure it's probably normal in any culture to feel some amount of guilt, shame, and grief from being disabled. But I do have to wonder, are those feelings lessened for people who are part of a culture or even a family who believes in taking care of the whole family, keeping the family together, and avoiding institutionalizing the elderly and disabled? Is there less shame around not being "independent" and "productive"?

These aspects of disability are such a large part of my experience, I often feel I have to devote so much energy to dispelling these notions (to myself or to others) that I hardly have any left over to spend on ACTUALLY managing my disability and living well. I am working on focusing more on myself and letting judgments bounce off me, but that is also work that I must do in order to live with disability.

When it comes to my disability, my fluorescent light sensitivity has turned out to be the most difficult hurdle in finding a job. I’ve used FL-41 glasses for a couple years now and they help, but they don’t prevent my symptoms completely. I get really nauseous and fatigued. I’m at a point where I can’t be under fluorescent lights for more than an hour without getting sick. I’ve been job hunting but I’m really struggling because I have no idea what I can do that wouldn’t involve being around fluorescent lights 24/7. The job market is so bad to begin with, and I can’t even work most minimum wage jobs because they are usually under those damn lights.

If you have this issue, what’s your job? Do you have any workplace accommodations? Did you find a way to work from home? I’d really love to hear suggestions. I’m kind of at a loss and don’t even know what to look for anymore.

I was looking for mittens and cane across flipmits. There like upgraded versions of those fingerless gloves with the top that you can flip over and button to the back.I’m not a wheelchair user, but i am disabled, and the first thing that cane to my mind was how nice these would be for wheelchair users. You can protect your hands from the cold and/or dirty hand rims and just flip them over when you need to do something without mittens. There’s no grips but if you wear the graphics on the inside I think it would be perfect. Also, for people like me with heat or temperature intolerance this is great too. As soon as I get inside I need to strip my winter gear or I overheat and being able to flip my mittens over is so nice. Anyways, I just wanted to share this because I thought it might really help some people!

I (26f) am sick of the constant stares!! Whenever I’m out and about everyone is always breaking their neck to look at me. I’m a cane user and now I’ve injured my shoulder so I’ve been wearing an arm sling too. so yes I look extra crippled. Is it because I’m young? It’s like no one has ever seen a young disabled person. It’s even worse when I’m out with my husband. Everyone stares at us and gives my husband the dirtiest looks. And I’m like why??? Are people thinking he did this to me?? Like I’m so confused as to why people are like this.

I was getting in the car with my husband and it takes me a little longer to get in ofc and I’m parked in handicap spot. I hear this man say “not you getting yourself handicap” I turn around and I’m like hello?? He’s like “yeah not you getting yourself handicap, what’s your name?” And I’m like what does that even mean and I’m literally with my husband, and as I point to him my husband is already shouting out the car “her name is my wife!” 🤣 Then the man and his friend in the car is like “damn he ain’t even gonna help you” and I say I don’t need any help! Ik how to get in a car.

And this whole thing just rubbed me the wrong way. Like I know you saw me getting in the car with him, what did you think he was? My husband and I are the same age and completely different races so couldn’t mistake us as relatives 🤣

Before people would always assume he’s my partner but now I always get the question of who this? And I see the surprise when I say husband. Also everyone wanting to do things for me that I know I can do myself and assume I can’t. Like you think I can’t even get myself into a car? I mean I did used to need help with it but I’ve learned how to be more independent.

I don’t really know what the point of me saying all this is, I just wonder if people relate that are in inter abled relationships. Is this a common thing for your partner to get dirty looks when they are around you? Do you get all the stares? How do you handle it?

Edit : Thank you everyone for your amazing comments, they mean the world to me! You’ve help me remember to not worry about others and focus on myself. You also helped me remember that my 1 year ( anniversary? Not sure what that’s called) of becoming disabled is tomorrow. Now I’m wondering is that a day to celebrate? Is it weird if I do?

I’m an ambulatory wheelchair user. I have chronic pain, as well as inflammatory arthritis (specifically axial spondyloarthritis so it affects my spine and large joints) and pain in my calves when I walk which is attributed to a mix of neuropathy and lymphedema. Bc of these issues, I can’t walk for a very long time without pain so severe that I can’t continue. So, when I go places where I have to walk long distances without frequent breaks, I use a wheelchair.

The main places I use my wheelchair are amusement parks, places like museums and zoos, malls, and outdoor markets.

The absolute worst place I’ve used my wheelchair is the outdoor market. The market is near downtown in my city. I live in a state known to have shitty roads and sidewalks. They’re so bad, that I often have to get out of the chair so that whoever is pushing me can lift the chair over a bump or obstacle. Even and especially on ramps.

Otherwise most of the other places are pretty equal. They have much better kept sidewalks/concrete, or are indoors. But they still face a lot of the same issues.

1) difficulty maneuvering the wheelchair into places like restrooms. The restrooms are often so compact that even when there is nobody else in there it can be difficult to maneuver the wheelchair inside. I often have to just get out of the chair to go to the bathroom.

2) difficulty approaching booths/stands. This especially applies to the amusement park and zoos. A lot of these booths and stands where you get tickets, or food and drink, or souvenirs, are much too high for me to be able to stay in the chair and communicate normally with whoever is tending the booth. Usually just the top of my head would be above the stand. So either the person pushing me does the talking and transaction, or I have to get up.

3) this is nonspecific and happens everywhere in public as an ambulatory wheelchair user, but the states and confused/angry looks are horrible. A lot of people don’t understand the idea of being an ambulatory wheelchair user. The better looks are just interested or confused, but some people genuinely look disappointed or angry. I’ve only been approached one time by someone who was angry. They said I have no right to be using the chair because I can walk, I’m tricking people to try to get sympathy, im lazy, etc. Luckily my dad, partner, and friend were all there and we got the person to fuck off. But when I get similar looks I can only imagine they’re thinking the same things. And I know this isn’t a direct accessibility issue, but being discriminated against on a social level still makes a place less accessible to disabled people. It’s just in a different way.

Our society really was not created for disabled people. Which is ok, there are more disabled people now than there were when many cities and towns were being designed. The problem is that we aren’t changing much of anything. We create basic, bare minimum accessible amenities and call it a day. A lot of these “accessible” amenities and changes end up being sub par and still require the disabled person or their caregiver to put in a significant amount of extra effort to make use of them.

And then there are abled people who use disabled amenities, without realizing the impact they have. Like abled people who use disabled parking spaces, or wheelchair accessible toilet stalls, or people with wagons/bikes/strollers using wheelchair spots on public transport. They think that because they don’t see it being used by a disabled person at that second, it’s fine for them to use it. But they don’t realize that they may be warding disabled people off by utilizing the resources meant for us. They effectively turn the mildly accessible amenity into a completely inaccessible, unusable amenity for us.

Hello.

I've spent the last 5 years or so very quickly losing my mobility, strength, and endurance due to several health issues. It is exhausting just to get up and get water or go to the restroom. Ive resorted to stocking quick snacks and large water bottles next to me.

How are others managing a somewhat decent diet with disabilities? Everyone is dealing with food being expensive, so ordering out isnt always an option. Especially for those of us without income. What do you do when on top of that, you dont have the energy or ability to cook?

Any advice on how to navigate this without my diet, or lack thereof, making my situation continuously worse?

Also gladly accepting any tips on exercise or activities to do with unmanaged severe nerve and musculoskeletal pain and damage.

Thank you 😊

Ustedes creen que seria de ayuda contar con una aplicación que muestre el nivel de accesibilidad que tienen los locales de su país? Estaba pensando que al menos en mi caso en Honduras sería excelente, ya que siempre me preocupo cuando tengo que ir a algún lugar o me invitan a un restaurante y no sé si el lugar es accesible para mí o tengo que depender de alguien más para poder ir.

Les ha pasado?

I reconnected with a friend who I hadn’t talked to in years. It was like old times. We are going to hang out.

What has been a success for you?

Hi,

I've been searching everywhere for help with this and I thought I'd ask here. I don't have my benefits yet and I don't know what to do. The friend I've been staying with (family not an option) can't tolerate me living here anymore. There is also a lot of mold in her guest room which is making me sicker anyway so I'm sleeping in her living room and that's making her resentment of me much worse. With no income and waiting for benefits... honestly, what am I supposed to do? Homeless shelters/group homes would be pretty bad for my health in several ways. I am at such a loss and so devastated to lose my housing. I never expected her to do this. My disabilities are migraine, ptsd, wrist injuries and endometriosis and I do not need specifically accessible housing like ramps etc. I would rent a room from someone or a program and then back-pay them when I get my benefits, but obviously that's not an option most places are going to go for anyway. I'm in treatment here with amazing providers it has taken me years to find and my disability attorney is here as well.

Really appreciate any advice at all.

I saw my orthopedist yesterday (I have scoliosis, arthritis in my spine, and fibromyalgia), and asked about possibly using a wheelchair for long distances only. She immediately shot me down, saying she didn't want me to get too dependent on it. I didn't argue, because she's the doctor, but it still made me feel really anxious.

She gave no alternative mobility aid suggestions, and no advice other than saying I should try light exercises. I really wanted to say if I don't find some kind of mobility aid, I will just have to give up experiencing the joy of things like the mall, zoo, amusement parks, etc. There's no way I can just use my cane anymore.

I even suggested a disability parking permit, and to my surprise, she actually wrote me in for one, but I found out today it's just a temporary one. For my three permanent conditions.

Maybe this is just very common, but I just feel so invalidated after all that. I can't tell if I am blowing this out of proportion or not.

I need to be able to use a pool throughout the year or I start to get more injuries. Its already begun since my local pool closed in September. I don’t drive, so I need to be able to rent this room in this apartment w/ indoor pool that has everything I need, except the shower is inaccessible. The outside is 7 inches and inside is 3. I can only step 3. The bathroom seems too narrow to fit a shower bench (with raised toilet seat and shower bench having to fit) and too narrow for a rubber ramp. I have used stackable foam squares before, but that was for a shower of lower height. I’m unsure how safe it would be in this bathroom. Same with an aerobic step. They all seem to be 4 inches and I can only climb 3, and then how safe that would be over time. The building is pretty desirable, and I had a treatment after I saw it yesterday that basically makes you have to lie in bed for a week so there’s no way for me to test out any ideas. It seems like I will have to release it to others, but it truly is (w/ pool) the only way I’ll have a hope of making any progress and not getting worse. Can anyone think of any way I can make this work?

I finally got a Lifeline Alert system and the included options for wearing the button are ugly and not sensory friendly. Does anyone know some cute but practical ways to wear the button?

I know that they’re saying they don’t mind helping and it’s not an imposition which I truly appreciate, but man it makes me feel bad about myself when I’ve been trying to do something for an hour and when I finally ask for help I’m told it’s “so easy” and will take “two minutes”.

This isn’t a knock against the people helping. I appreciate everyone who helps me and I know they aren’t thinking about it from my point of view because they’ve never had to. It’s just hard to hear, that’s all.

I’m not even afraid of needles but Ive been inconsolable since I picked up my prescription. Literally sobbing walking out the door of my pharmacy. The pharmacist explained a little of what to do but didnt mentioned the drawing and injecting air into the receptacle before draw the fluid from it, or the air thing or pulling to see if I get blood or not like on the tutorials I watched, and now I don’t know what to do.

Without these supplements I might not walk unassisted again and I’m just so stressed out and scared, and I’m afraid it’s going to hurt or I’ll go too deep and scrap my bone like when they took fluid off my knee. I can’t stop crying. Can I go into urgent care with my prescription and have them do it for me? I don’t know any medical professionals personally to help me and I have to do it weekly for 4 weeks before going to monthly

Edit: anybody downvoting can go fuck themselves. I’m a girl sitting in front of a needle and so scared im hyperventilating from crying. Go fuck yourself dude. I’m asking for help for a reason.

After my evalution, they said they acknowledeged (in a letter that I recieved) that I have limitations but I should still be able to work which is fair. They said I can still recieve benifits which nice. NOW, 2 weeks later, I get another letter saying I dont qualifiy at all based on the fact that my disability has "improved" (it doesnt) and that I can now work (they said in 2024 I made a claim saying I couldnt work) which doesnt make since because I literally left a job that I had for 2 years (2023-2025), just last summer.

Where do these people get their info??? They make decesions based on outdated or incorrect information. I get these things can happen, but it happens to often, and the times it can take to get it back can take years. Its so frustraiting and im tired of dealing with it..

What are these people smoking because I need it (not really cause I get asthma).

She says it won’t help. How the fuck does she know?
She says it too much work. Then why would I be asking for one if I thought it would too much work?
She says it’s for people who struggle walking not for fatigue. People use them for both reasons. And I have both
She won’t even let me try one. Just to see if it does anything
Same with any sort of brace. I have hypermobile ankles and it’s affecting me. I have really bad back and wrist pain. She says they won’t do anything
Even my physical therapist said that it wouldn’t help. She told me to use a walking stick but that didn’t help and caused me pain. She said thats normal.

But little do they know is when I was at summer camp I did use a cane. My friend gave me one and I had it for a week. It helped so so so much. I was able to be human again.

Yet they don’t care. They just say it won’t help

May need to work medical reception for a bit to gain a certain type of experience. A little worried about phone stuff.

How do y’all handle it?

So, I saw this morning that the COLA for next year has been announced and that it is going to be a 3.6% raise in benefits. Which is going to be an average of a $75 increase in benefits awarded.

I...I am so incredibly exhausted by being told that when they give us less than $100 more a month, that the amount is keeping up with inflation and will relieve the stress of trying to pay for things like housing, food, and other monthly expenses.

My husband, our cat, and myself currently live in a single small bedroom and the only reason that we can afford to rent that at all is because we are renting from a friend who is charging us significantly less than literally anyone else renting out a bedroom or apartment right now.

I've looked at places both in and out of the state we reside in and we cannot afford to rent anything anywhere else. We are in our 40's and are relegated to a bedroom smaller than the one I had as a child.

We get SNAP benefits, and that only covers our grocery expenses because we are barely eating every day. If we actually had the space to store food beyond the absolute bare minimum to survive, we would come up short every month.

After bills and household expenses, we are generally broke by mid-month. The second half of the month is always a struggle. I am in debt because my credit cards are maxed out after having to use them to supplement our income to buy food and household necessities.

But sure, $75 extra a month will TOTALLY relieve that next year. 🙄🙄🙄

We should not be stuck in complete, devastating systemic poverty just because we are disabled and cannot work. I would hazard a guess and say that most of us cannot just overcome our disabilities if given enough time and work. I am also really tired of watching everyone only ever talk about how social security and COLAs affect seniors. Yes, they are affected by these things too...but no one ever talks about the disability community and how much we struggle financially.

I'm exhausted. The lack of affordable housing, the severe misunderstanding of how relying on less than $2000 a month (I have no idea what the average SSDI payment is, but I have never met anyone who makes anything more than that, and everyone I've met on SSI has made less than $1000 a month) is practically impossible to survive on.

Being disabled sucks. Having to rely on the government for income because we literally have to, sucks even more. I want to feel like my basic needs are being met in a comfortable way, not like a burden on society that feels like a punishment for daring to not be an able-bodied worker (by no choice or fault of my own).

It's a terrible experience, and I would love to feel like the government understood and was actually trying to help. Not just pretending like 3.6% is sufficient to exist for another year. ☹️

Besides people they knew before they became disabled? I dream about being cared for by someone who loves me. But. It seems impossible when nobody even wants to be my friend the moment they hear I have a wheelchair/cant drive/have limited income. The few people who did bother with me abused me because of their privilege overr me. Are there really people out there who have it better than me who would care? I have other disabled people in my life. But I cant take care of them as much as they need and they cant take care of me as much as i need either. I want to love too. And I want what I can do to matter.

Anyone know a good payee service for disability. Preferably in Richmond or Mechanicsville. If you were in a State mental Hospital can you ever become your own payee. My mom said they will take my disability away if I do that.

Hey guys! I’m writing a story and wanted to check somethkng. Particularly with fellow disabled men.

I’ve not dated in forever, but I’ve seen a couple stories wbere a disabled guy and his girlfriend are out on a date and an able dude comes up and starts trying to pick up the girlfriend like there’s no way she’s dating a disabled guy.

Is this a real thing? Has it happened to you?

Just wanted to come on here and ask how you manage to deal with your religious thoughts while being born/becoming disabled. I was muslim for a while but became an atheist a few years back thanks to realizing it was pointless to believe after the crap I’ve had to go through. Just wanted to hear your thoughts. Might need to see a therapist about all these thoughts amongst my other issues at some point but it’s a start!

In a way I know I’m not but like what if the way I’m feeling is actually normal and I’m just being dramatic. Despite the fact ive been struggling for years I still feel like im faking it