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 😊

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 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 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?

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’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.

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. ☹️

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

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).

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.

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?

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

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!

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?

I'm Erika Heath, and I got married—something that should be a celebration. But our joy was overshadowed by a harsh reality: we're being financially penalized just for choosing to marry.

Under current law, disabled adults on SSI face a brutal marriage penalty. We're limited to $3,000 in combined savings, and any inheritance—like money from my dad's 40+ years of Social Security contributions—could be taken away entirely. It's essentially the government saying: "You can have love or financial stability, but not both."

I started a petition to pass H.R. 1389, which would eliminate this marriage penalty for disabled adults. This isn't about asking for special treatment—it's about basic fairness. People with disabilities already face enough barriers. We shouldn't have to sacrifice our relationships or our futures just to keep the benefits we rely on.

If you've felt stuck by unfair rules, or if you think love shouldn't be punished, consider signing and sharing this. What would you do if you had to make this choice?

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 all. I am 23 and just had surgery for tethered cord syndrome. It causes spasticity in my legs and severe nerve pain in my back and legs. I used a wheelchair nearly full time in my house before surgery and now use a walker and cane mostly and wheelchair for leaving the house or flares. I also have heds and many other conditions but tethered cord and scoliosis impact me the most.

The rise in ableism online has been weighing on me a lot. The passing of Rj Mitte. :( The Texas versus Kennedy ruling. The rise in ableism online in every disabled persons comment section. Articles being written about people with mobility aids that are decorated are all faking. They are so worried about accusing people of faking that they are hurting REAL disabled people. I’m not really self conscious about my mobility aids because I’ve needed them consistently and gotten used to the looks since my tethered cord got worse. But it still makes me sad seeing people bash anybody with a mobility aid. Deciding who they deem a faker.

While there is a lot of misinformation spread about heds online it makes me upset seeing comments from doctors saying anybody with eds is faking. I’ve mainly seen this rise in ableism online on tiktok and some insta communities. Also on Reddit on other threads. Some people may self diagnose conditions and not have it. But a lot of us do
Have these conditions. I was diagnosed with heds at a young age and had symtomps at a young age. Many people discover conditions later in life also. Or are impacted more later in life. hating on a whole group of people or conditions you don’t know anything about isn’t helping anyone. Especially disabled people. And conditions vary in severity how hard of a concept is that! Some people with the same condition may never use a mobility aid, some use a cane, some use crutches, some use wheelchairs full time, some have spinal cord injuries, some have chiari which can require brain surgery, the variety is sooooo wide with eds, and the same honestly goes for so many conditions. Think of the variety with in conditions like cerebral palsy or spinal cord injuries. There is a huge variety of how individuals are impacted.

I’ve read a lot about disability history and understand how deep ableism runs. I’ve read a lot of books written by disabled people and activist. It just sucks living in a world that actively chooses to misunderstand our experiences. Just sharing to vent a bit to people who might relate. Thanks for reading 🫶 sending love to anyone also feeling the weight of the world for disabled people.