r/disability

Has anyone else ever gotten to the point where you hate finding out about cool things going on in your area because you can't go without a driver/caregiver?

I got this feeling the other day because there's a wrestling TV taping in my area in a couple months that I would love to go to but I can't drive myself and I, a 33-year-old guy, don't wanna subject my dad to my weird niche interest. There was also an Alice in Chains concert last year I would've loved to have been at. Anyone else ever had this?

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u/JCStensland — 22 hours ago

Seeking Crew Members for Low-Budget Horror-Mystery Feature (100% Disability-Led Production)

Hey everyone,

I’m working on my debut horror/mystery feature, and I’m building it around a core mission: 100% authentic representation, both in front of and behind the camera. That means Deaf actors, disability actors, and disability crew members at every level of production.

This is the start of what I hope becomes an ongoing film company dedicated to closing the gap between disabled talent and the industry. Filmmakers helping filmmakers, low-budget and DIY in spirit, but with real ambition for the final product.

I am aiming to film during summer 2027, though this may shift depending on my senior thesis workload this spring/fall, so I’ll keep everyone posted on firm dates.

If you’re interested in being part of something that puts disability representation at the center instead of the margins, I’d love to have you involved.

Sign up here and I’ll follow up as plans solidify:
👉Sign-up form

Feel free to comment or DM with questions. I am happy to talk more about the project, the vision, or the logistics.

Edit: filming will be taking place in Northern California south of Lake Tahoe.

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u/RyanJoe321 — 21 hours ago
▲ 25 r/disability+1 crossposts

Ohio Disability Policy Statewide Candidates Forum in Columbus today.

Several candidates for office across the state joined us today at the Fawcett Center to address disability related issues and policy questions. Next time you speak to a candidate, consider asking them about their plans for tackling disability issues in our state.

Photo shows a packed audience sitting around tables while being addressed by the Secretary of State’s Office ADA Coordinator, Brett Harbage, and an ASL interpreter nearby.

u/stony-raziel — 22 hours ago

Friend is mad at me because my partner doesn’t work

My fiancée is 23 and has POTS, EDS, autism, CPTSD, and degenerative disc disease with a bulging disc and pinched nerve. Her back is so bad they said it was like seeing someone who was 80 years old. She hasn’t worked in two years because all of these things have gotten worse for her as time went on. Now my friend acts like she’s a bad partner for not working and it’s so annoying.

She will be bed ridden for days because of the pain and because my father didn’t have a job growing up my friend thinks I’m falling into the same pattern as my mother when my dad had no disability and just mooched off my mom because he’s a bad person.

Despite being in pain, she still cleans the house for me and cooks me dinner and lunch depending on if it’s my day off. She never complains about doing this stuff but now my friend is saying our relationship is 80/30 and it’s not fair to me. All I do is work, clean the litter boxes, unload the dishwasher and clean the bathroom. My partner does everything else, if she didn’t have these disabilities she would have a job and we would split cleaning evenly.

It’s so annoying and frustrating how she talks about my partner when she was actually in an abusive relationship before and I never bad talked him to her ever. I’m getting fed up and she keeps canceling when plans involve my fiancée because it bothers her that badly. My birthday is this weekend and if she cancels on me I think I’m going to end our friendship after 20 years. It’ll be hard but I can’t have people in my life who don’t support my choices and make me feel bad for choosing the person I love.

It’s also not like my partner isn’t trying to get disability either, she’s been doing it for two years now and they’re having to take her case to federal court because they keep denying her and her lawyer thinks it’s unlawful and the judges only see she can speak clearly and thinks she’s not disabled. Sorry for this being so long I’m just fed up.

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u/vixenvangu — 2 days ago

For anyone who has an SPC

I'm considering an SPC as a last resort and have some questions which I'd be very grateful for getting answers to.

I currently (and for the last few years) need to pee pretty much every single hour. Because of that, I don't drink when I'm outside, so I'm permanently dehydrated.

I tried self cathing (I bleed and am in pain for up to 12 hours afterwards, gave up after 2 weeks) and multiple different pills which all gave me urinary retention.

I'm wondering weather y'all feel like you need to pee 24/7 because of the balloon inside the bladder? Caus I heared someone say that and I think I'd rather stay dehydrated then :')

Also, how often do you need to get it changed? Caus I travel A LOT for work and can't go to an appointment every 4 weeks.

Does the whole thing generally cause you pain?

I'd be very grateful for any form of experience that anyone has to share!

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u/seaswitch- — 1 day ago

A coworker didn’t recognize me because of my cane! Wild!

This happened like 5 minutes ago, and I’m still processing!

A coworker who I’ve known for over 5 years didn’t recognize me because of the cane.

We’ve both switched roles so I only see her maybe once a quarter. We usually say hi, chit chat a a bit and then go about our days. She’s never seen me with the cane since it’s a fairly recent development.

Just said hi to her per usual, and I get the weird squinting reaction where someone is clearly trying to remember if they know you or not. She said hi back and kept walking so I was like oh whatever, probably busy.

But then she stopped dead in her tracks and turned around and gave me a proper hello like normal. She fully admitted she hadn’t recognized me because of the cane.

This is WILD to me. It’s not like it’s blocking my face. I’ve only ever experienced something similar when I get a haircut lol. Is this typical?

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u/Abject_Priority6858 — 2 days ago
▲ 351 r/disability+1 crossposts

‘Furious’ Star Steve Way on the Beauty of ‘Disabled Love’ and the Difficulty of Navigating Hollywood Without a Team: ‘I Want an Agency to Whore Me Out’

variety.com
u/Sisiwakanamaru — 2 days ago

Hi, I'm Elliot. New mod here: introduction, AMA, and a couple of possible peer offerings

Hey r/Disability,

I'm Elliot (they/them), and I was recently added to the mod team. I wanted to introduce myself properly!

Who I am

I'm disabled. I use queer crip for myself, and I mean both terms in the reclaimed, critical, political sense they were intended. I'm also a psychiatric survivor. I've been on the receiving end of the mental health system, including legally mandated inpatient after a psychotic break, years of resultant antipsychotic treatment to stay in remission, PTSD diagnosed due to childhood abuse and subsequent clinical psychedelic treatment, academic dropouts and more.

Those 5 years in and out of institutions radicalized me against ableist discrimination even more than I already was as a person with multiple chronic illnesses. I know what it's like to have to completely avoid the hike everyone else is going on because it's not accessible to my body, even though they promised it would be.

I'm interested in Mad Studies, disability justice, and amplifying the lived knowledge of people who are actually receiving care inside these spaces.

I'm not here as an expert on anyone's disability but my own, however I would say I'm a community member who happens to have picked up some useful skills along the way.

What I do

I'm a doctoral student in counseling psychology in Colorado, USA. My research interests include why rural and LGBTQ+ Americans die of despair (suicide, overdose, alcohol) and why the prevention efforts we've built keep missing the people at that intersection; the inherent tension between suicide prevention and Medical Aid in Dying and the concept of compulsory aliveness; culturally valid assessments for neurodivergence in Black women and girls; and affiliative intent in queer communities.

Before the PhD, my work was frontline:

  • Peer support specialist on a Mobile Crisis Outreach Team. Responding to mental health crises in people's homes and in public, alongside a licensed clinician.
  • Advanced psychiatric technician at the University of Utah's Huntsman Mental Health Institute. I designed and ran my own therapeutic groups on an inpatient unit.
  • PTSD peer navigator. Currently co-facilitating skills groups in a trauma-focused telehealth program.
  • Court Appointed Special Advocate. 250+ hours advocating for abused and neglected kids in foster care, including testifying in court.
  • Medical scribe for four years. Otolaryngology, interventional cardiology, urologic oncology, primary care, and more.

I'm an AAS Certified Crisis Specialist and a Certified Crisis Worker in the state of Utah.

That scribe job is the one most relevant to what I want to offer below, so let me say more about it. I spent four years with my head completely inside medical charts; at that time, I had just finished my EMT program and wanted to go to medical school. At my most intense stretch I was editing, updating, cleaning up, summarizing, and analyzing charts for four interventional cardiologists across a large hospital system spanning Illinois and Wisconsin, as many as 90 charts in a single day (that was the WORST). Medical terminology is a second language to me at this point. There is very little you could put in front of me that I couldn't read.

I also came out of that job understanding the system's constraints from the inside, leading to why your doctor had eleven minutes to talk to you, why the note says something that doesn't match what you remember happening, why the referral vanished before you saw it in your portal, etc. My medical practice began sending robotic sounding messages that just repeated what I said back to me, so I did some digging and found out they switched to an AI messaging platform. More of the logistics/mechanics.

The non-CV version

  • I grew up in rural Arkansas but just recently moved from Salt Lake City, Utah to Colorado for grad school and I'm still adjusting to the lack of rain showers out west, despite being here since 2021. I need to be out in an afternoon thunderstorm each day to feel something lol.
  • I'm also a published photographer and prolific baker! Currently trying to master cheesecakes and improve my photo essays of artisans working on their craft
  • I have an 8 year old maltipoo named Arlo that is my soul dog; we've been through so much together
  • I'm one week out from my one-year wedding anniversary!! Navigating an inter-abled relationship has caused some turbulence for us that we've had to actively overcome.
  • I'm also a transgender non-binary person who has medically, legally, and socially transitioned- with all the hoopla that comes with that in the uSA

Ask me things, if you'd like!

These topics are fair game, I'd say, within reason

  • Anything about the work above: crisis response, peer support, inpatient units, group facilitation, CASA and foster care advocacy, scribing, what medical charts actually say about you
  • Disability, chronic illness, and psych system navigation, both my own experience and what I've watched others go through
  • What doctors are like as soon as they walk out of the room (I heard it ALL)
  • Grad school as a disabled and Mad person, accommodations, whether any of it is worth it
  • Mad Studies, disability justice, crip politics. I'll chat about theory happily.

What I won't do: diagnose you, tell you whether to take a medication, tell you what your scan means clinically, or replace anyone on your care team. I'm not a physician and I'm not a licensed psychologist, I'm a student which is entirely separate from my online presence.

Peer navigation sessions

If there's interest, I got permission from another mod to gauge interest for setting up a limited amount of sessions weekly so people can schedule time with me one on one for peer discussion and support. (Free.) Here's exactly what I was picturing that would be and, more importantly, what it would NOT be.

What it is:

  • Sitting with you and your medical records and helping you understand what they actually say: the abbreviations, the structure, what a given note is communicating to the next provider
  • Helping you figure out what questions to bring to your next appointment
  • Talking through navigation options where you live: what kind of provider you might be looking for, how referrals tend to work, what the system is likely to do next
  • Just talking to someone who's been on both sides of the clipboard and won't be shocked by anything you say

What it explicitly is not:

  • Not medical advice. Not therapy. Not diagnosis. Not a clinical service of any kind.
  • Not a second opinion on your treatment
  • Not crisis services. If you're in crisis, please use crisis resources. A scheduled call isn't the right tool for that, and it would be unethical for me to hold or handle that situation without crisis services where you are.
  • Not a substitute for a patient advocate, case manager, or attorney, though I can sometimes help you figure out that you need one

On confidentiality: this requires real trust and I take it seriously. What you tell me stays with me. I hold the confidentiality standards expected of me as a peer support specialist and as a doctoral student in a clinical training program, and tbh just as a person who thinks that's the baseline with my own medical information. I won't discuss your situation, download your records or store them, share your records, or reference you anywhere, including here. The ordinary limits apply: if someone is in immediate danger, this is NOT the support you should be seeking.

If that sounds useful to you, here's a link for interest and I'll keep a list of people to notify when the scheduling link is ready.

Looking ahead: an 8-week virtual Disability & Grief peer support group

I'm also developing a virtual 8-week disability peer support group, specifically centered around grief. Still in the building stage, so I don't have dates yet, but here's the rough gist of it:

  • Peer support, not group therapy. I've designed and facilitated therapeutic groups on an inpatient unit and I co-facilitated up to 5 virtual emotional skills groups weekly, so this will be structured and actually run, not a free-for-all video call. But it is peer-led space, not clinical treatment.
  • Eight weeks with the same people, so we can build it into something safe and predictable rather than restarting every session
  • Disability-centered. Not "coping with your condition" framed around getting you back to productivity. Closer to the crip and Mad Studies orientation I described above.
  • Virtual, so geography and energy levels aren't that much of a barrier above your normal baseline spoons

If that sounds useful to you, here's a link for interest and I'll keep a list of people to notify when it's ready. Feedback on what you'd want from a group like this is super welcome, especially from people who've been in groups that didn't work.

Mod stuff

I'm here to support this community by following the team's lead on moderation norms and existing rules. If I do something that doesn't sit right, feel free to just say so, publicly or in modmail.

Glad to be here!!

Elliot

u/applejacklover97 — 2 days ago

SSA disability lawyers- is this the normal way?

I’ve had zero legal advice regarding my case. Now, I have been told generally disability lawyers don’t do jack but file your appeal and fax med records essentially until ALJ hearing.

I have to say, I feel like the fact they sit on their ass, collecting your 25% to do hardly anything feels predatory, not just to clients, but the disability system itself.

Perhaps if cases were actually HANDLED, proper evidence and such would get more approvals sooner instead of backing up the SSA system.

Then again, it seems SSA does the same thing, mindlessly deny until hearing, which in sure lawyers would adapt to by doing little until an actual judge considers the facts.

I don’t know where the true root problem is, I just know it’s a problem for many, and I’d love if someone had any advice on what I can do to further support my case because getting my doctors to write “she can only stand 5 or less minutes” about every possible task is just not realistic. In fact, most of their notes are inaccurate, which isn’t helping. Insurance also won’t cover the testing, meds, mobility devices I need so like, at this point I don’t know why I pay for insurance at all.

I feel like I’m effed.

I know this feeling will pass, I’m just frustrated not knowing more about the process.

Thank you for letting me vent/ask 💕

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u/Rrenphoenixx — 2 days ago

I hate how I get treated by many people who are supposed to work with disabled people

I receive extensive services through a waiver through my state for multiple disabilities I have , and there is a lot of stuff going on lately where they messed up some stuff and it's hard for me to understand kind of what's going on , and I was trying to communicate to a woman who is in charge of some agency I am being switched to for one of my services , and for some reason something got messed up with sending my documents

All I did was ask to kind of make sure that I understood maybe a little bit of what was going on (and I got help writing the emails with my worker) , I asked to make sure I understood , and she immediately started sending me very passive aggressive emails and then stopped responding to me altogether.

I feel like I'm a nuisance and annoying people , these people are supposed to be trained to work with disabled people and all I'm doing is trying to very politely as possible ask a couple of questions because I don't really know what's going on and I'm very stressed out about the changes and it's making me really upset.

Why would you immediately start getting angry at me that I'm asking one question and then just stop responding to me entirely. Your whole job revolves around speaking to disabled people and getting services coordinated for them and you just treat them like crap.

Just wanted to vent because it makes me very depressed and my anxiety even worse about it because not only do I not understand what's happening , the person who is supposed to help me understand what is happening does not even want to communicate with me at all because they have now branded me as annoying disabled person annoying me with their questions about their care.

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u/Cat_cat_dog_dog — 2 days ago

how do i stop feeling guilt towards my partner

i’m severely anemic and sometimes can’t get out of bed because of the fatigue, this has been going on for years (though only being this bad for a few months) and it will take months until any treatment might work. i have an incredible partner that has been with me for almost two years, he loves taking care of me and is very understanding of my condition, the problem is others aren’t. they still expect me to do everything a normal person does and when i can’t that responsibility is shifted onto him (cooking, cleaning that type of stuff) and recently i’ve found he wants to do fun activities with me that i just don’t have the capacity for, he tells me it’s okay but i can see it saddens him when i reject things so many times.

i just don’t know how to deal with this guilt that he deserves a whole person who can do all these things with him and he doesn’t need to take extra care of. we’re also quite young (19/20) so this responsibility of him having to take care of basically another person feels so unfair to him.

ps i don’t know if im allowed to post here since anemia is treatable and will likely be gone next year but i feel completely disabled right now

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u/create_ur_username — 2 days ago

What joke(s) do you tell about your disability?

I tell people that I use a cane in case I need to bust out a Fred Astair impersonation and that my neurological issues are brainfreestyling.

When my husband is being obnoxious, I (jokingly) tell him “My cane gives me an extra 37 inches of reach. Either stop being annoying or move 38 inches away from me.”

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u/Badwoman85 — 3 days ago

How do you go about asking your spouse to cover more financial expenses when you become disabled?

I'm late diagnosed autistic and realizing after many years of trying that I simply cannot work a full time job. I've tried working from home, working on my special interest field, etc and I can only make it one year at any company before I burn out so severely I end up in the hospital and spend months recovering.

I don't qualify for disability because my husband makes enough that our household income is a ove the limit. But for the eight years we've been together we've always split everything 50/50. Mortgage, groceries, insurance etc.

For the first time in my life I'm realizing I probably cannot afford to keep contributing 50% of the income if I'm going to actually love and work in a sustainable way (part time work and or freelancing).

When I've tried to talk to him about this before he gets very nervous because he doesn't feel like he makes enough to support both of us. He always asks "how long will this be going on that you can't afford your share?" And I'm feeling really ashamed and awkward that he answer is turning out to be "probably for the rest of my life".

For people who have adjusted their finances so their spouse takes up more of the expenses because you can't work, how did you have that conversation? How did you navigate the "make too much for disability, don't make enough to not be dual income"?

Thanks!

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u/Helpmeeff — 3 days ago

I just want to say thank you to the sub for saying it is okay to be upset and not be "grateful" for "help" that is a lot of the time subpar and frankly utterly unless performative nonsense that does nothing; and what is worse is people love telling you it could be worse.

It is so condescending to be told to be grateful for subpar support and treatment because it can be worse like that makes it okay. We get it living with a disability is not easy and people are doing their best to get through it, and some stress and resentment is understandable but so much of the "help" is an excuse to next to nothing and be obstructive. So much of it is to put bluntly nothing more than a way to control someone else and get an ego boost. Trying your best and meaning well means nothing if it causes problems.

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u/AdSpecialist6598 — 3 days ago
▲ 76 r/disability+1 crossposts

Best Disability friendly Switch 2 Set Up

I usually use the S2 in handheld mode with the stand but my Spouse had the amazing idea of using my Old drawing monitor as a Monitor for the S2 so i can play in docked mode too. And it actually fits in the stand! So now i can play docked while laying down! Its perfect! Looking on amazing for a mini/ portable monitor for better graphics and higher frame rate lol so i would highly recommend this to other disabled gamers!

u/blahblahlucas — 3 days ago

Something no one warned me about as a cane user

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

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

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u/TheBobbySocksBandit — 4 days ago

This is weird, did anybody else get this?

Hi there, I was awarded SSDI in July of 2024. Got my backpay a few weeks later. Ever since, I've been getting it monthly without a problem.

But last Wednesday, a direct deposit in a large amount from SSA was in my account. No idea why. And today, my usual amount was deposited. This is odd. Obviously, I'm not going on a shopping spree! I don't mess around with the feds haha. I figure I'll wait until this coming Weds, to give them a week to realize what happened and take it back if they need to, and then call them to see.

Has anybody else had large deposits years after approval? If so, what was it for? Just a glitch? Could it be correct? What do I say to them? Any input appreciated, this is just super weird 🤷

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u/Bratbabylestrange — 4 days ago