Hey guys I haven’t been here in a while hope everyone’s well.

So I am very picky/ have a lot of food aversions. Today I made veggie pinwheels which look amazing and literally all the ingredients I love. However once they are made I’m looking at them like Ewh this is disgusting I can’t eat these. This causes anxiety (which I know is crazy) because if I don’t eat them I’ve wasted a bunch of food and money and not to mention effort. So I feel disgusted from the food and anxiety so I’m double nauseous. I can’t keep eating just cheese puffs and cashews, but I can’t keep dealing with being nauseous because of new foods all the time 😭😭😭. And it’s not even always new!! Sometimes I’ll make a pasta or heat up leftovers of a meal I KNOW I love and I get the same feeling. Is this common?? Does anyone know how to deal with this feeling???

In this last year I have had a stroke due to a rare inherited disease that I had outward skin symptoms of for two years and also my hip finally gave out due to arthritis that had been characterized as chronic psychosomatic pain due to a spinal injury. I currently have no cartilage left in my hip and can no longer put weight on that leg due to contracture. The only option one of the more recent ortho surgeons gave me was a Gridlestone technique which is normally a last resort salvage surgery and not a first line option typically. This is all after I had a spinal cord injury in my teens and had to learn to walk again. I don't think I will be walking independently for too much longer and it's all because my doctors have been absent or attributed my symptoms to my old diagnoses. I am gutted and I cannot describe the level of disappointment and betrayal I feel towards my medical providers. I'm trying PT and botox as a last ditch effort but I honestly believe it's too late to improve my situation even with intensive work on my end. I can't describe how angry I am that this all happening all at once. Everything I built in my life for myself is just gone.

We have five spots open to join our chess tournament. All levels and all abilities welcome.

Join our chess club here: pALS Chess Club

Join the tournament here: pALS Daily Knockout Tournament

Hi, I have a disability and have the chance to educate fellow sustainability practitioners on the intersection and considerations between disabilities and sustainability. Are there any interesting resources you recommend to look into? Most resources are super vague that I find and just repeat in different words that people with disabilities should be included in planning and decision making processes and people with disabilities often are income limited, but I can't find resources that talk specifics.

Where are the resources on EV charging best practices for people with disabilities? Heat pump space and water heaters? energy efficiency considerations? Water Efficiency program considerations? City program design and plans?

Or, if anyone has individual experiences they could share, I'd love to hear that too! I have my own individual and work experiences to bring but I'd love to hear others.

My elderly parents (well, my mother) really wants to host Thanksgiving this year even though cooking and cleaning is hard for her. She started sending out slightly confused and demanding texts to our family group chat early this week about what we should and shouldn’t bring. It was kind of a mess because of all the misunderstandings. One of the things that happened was that she kept adding on more and more things that my sister should bring. I am the oldest daughter and would gladly help but I have a progressive muscle disease and can’t really cook or shop easily. I am actually bringing my own meal, some puree yuck. The thing is, in addition to bringing a lot, I know my sister is going to end up clearing the table and cleaning up. I wish I could help with that too but I can’t. My brother and his wife just sit there after dinner. My brother in law does help a bit. This is what always happens at my parents’ house. (Otherwise we have holidays at my sister’s house. Her husband does all the cooking and my sister does all the serving and cleaning up.)

Anyway, I wish I could be the sister that does this stuff. I provide emotional support to my parents but I want to do other stuff too.

(There was a Saturday Night Live sketch about this yesterday called “Sister” which I thought was funny but also sad because it was accurate. My sister texted it to me because she thought it was really funny.)

T9day I flew across the bus. Again.

I have a visible disability, but I never ask people to move from accessible seats because I know disabilities can be invisible.

Today, the only available seat was toward the back. Before I could reach it, the driver accelerated, and I barely managed to grab a handrail. Then he stopped abruptly, and I went flying.

My shoulder was dislocated.

Where I live, waiting until passengers are seated is a guideline, not a law. I've tried contacting the bus company about it, but they keep sending me between departments.

The driver did follow the requirement to stop and offer an ambulance, but I couldn't afford one. I went to the ER alone, where the doctor relocated my shoulder and suggested I sue.

But I'm not the first person this has happened to, and certainly not the first disabled person. I won't be the last, either.

I want to give the driver the benefit of the doubt. I understand drivers work under pressure and have schedules to keep. If I pursue legal action, I'd rather hold the company accountable than target an individual driver.

But I also worry that an individual settlement wouldn't change anything and my energy is beyter used advocating for larger change. I'm not just looking for compensation. I want to prevent this from happening to someone else.

What I'd like to advocate for is a policy requiring drivers to wait until passengers are safely seated before moving, rather than leaving it as a guideline.

So I'm asking for your experiences and advice:

How does this work where you live? Are drivers required to wait for passengers to sit down, particularly disabled passengers? Have disability advocates successfully pushed for changes like this?

And do you think making this mandatory is a realistic goal, or are there better ways to achieve the same level of safety?

I'm trying to figure out whether I (sorry for the pun) have a leg to stand on

I am just curious and want to know if people here are in relationships? And how did you find each other?

Plus, what kind of disability you have?

I moved to Europe as a grad student recently and I feel like I have some kind of invisibility coat on.

( Medical Equipment Rant!!)

Does anyone else experience this with Guardian Crutch tips, on their Forearm crutches?

Photo description

The slit down the top I made to get them off my crutches.

But the Splits in the bottom circled in green are the problem.

This is after one month of normal use.

And this always happens for the 20 years I have been using these crutches..

One would think that they would have fixed this problem by now.

I have another company I buy tips from now to replace these, and for average wear and tear, but really it's shameful how companies think this is okay to keep putting out unsafe products like this!!

Thank you to everyone sharing your successes. Success Sunday has become my favorite part of my week. Your joy brings all of us joy. Your success is a source of inspiration to others. No success is too small. Shout it from the rooftops! We are here to celebrate one another.

So I've officially had my cane for 2 years now and I realized that I need to change the tip since the edges are all gone. It's a Honeybull cane so I go on the website and all they're selling is a tri-tip. My cane is a single tip. I've been looking around for similar cane tips but haven't found any. Can y'all help me track this down? Or should I put this on a different subreddit?

Here's the problem: disabled folks on SSDI and SSI benefits often have amazing business ideas—web design, crafts, digital content—but no money to actually start them. The SSA's PASS program is supposed to help by letting you set aside income for business costs without losing benefits. But here's the catch: you need money to set aside in the first place. Most people on disability don't have spare cash, so they stay stuck.

I started a petition asking Congress and the IRS to create a $10,000 refundable tax credit specifically for disabled entrepreneurs, and to make it work directly with the PASS program. The idea is simple: the IRS provides the seed capital, the SSA makes sure it's spent on actual business costs (equipment, education, supplies, marketing), and disabled people finally get a real shot at building something sustainable instead of staying dependent on benefits.

It's not charity—it's an investment in people who want to work but just need that initial push. Has anyone here tried starting a business while on disability, or seen how hard it is? If this feels like something that should exist, consider signing and sharing it. Real change happens when people speak up about what actually works.

https://c.org/sK7crQtG5R

No advice please. I've exhausted all options that are currently available to me.

I was admitted to the hospital with quite clear symptoms of two autoimmune conditions and their respective antibody markers. But, probably since I had already been on Prednisolone for a considerable time, the one that can be treated by rheumatology couldn't be confirmed and the other must be treated by neurology, and while the nerve damage is confirmed, it's yet to be confirmed that it's an autoimmune process causing the damage. Which is basically done by begging a neurologist to try prednisolone again.

I keep being told it's "not that bad" because other autoimmune conditions are deadly and definitely progressive (mine just might be deadly and progressive). I know, but not helpful! I still struggle loads with mobility and pain. Since, I've only been offered medical pain management and therapy. It's been half a year. My pain specialist is overwhelmed because her first two medication suggestions didn't work, and I'm scared she might drop me, like my GP did. And pain psychotherapists are the worst! They keep suggesting my psyche might contribute while at least half of my illness isn't diagnosed yet. I guess they'd be out of work if they didn't do that. "Psychosomatic" medicine is a whole field in Germany with lots of disgusting history. I despise them by now.

Rheumatology doesn't want to see me again. All neurologists are booked out. I can't even make appointments for a year ahead. There is no help from the government or health/care insurance to help me keep my household or afford a wheelchair that meets my needs, although by law there should be. It's just not accessible, because I'm not fully diagnosed! I can't even get a parking placard.

I'm still working, and at least my group lead and the supervisor acknowledge how hard I'm trying and how well I'm doing despite it all. I'm lucky. I'm still crying every day. I'm mentally so fatigued.

I want to be taken seriously. I don't want to be told by doctors that others have it worse. I hate this mystery autoimmune condition. I'm sick of persuading/proving to doctors that I'm sick, or begging them for attention or treatment. I hate being complex. I don't want to pay everything out of pocket while it should be available to me.

Hi! This whole school year I was dealing with a really bad 1:1 aide (Cerebral Palsy). I was able to talk to the principal and they actually listened! I will be getting my previous aide back starting on Monday! Now that she’s gone, I would like to share the issues I had with her. Have Fun!

Talks to me like I’m two
Hops up and down and claps and tells me she’s so happy I’m there every day I get off the bus
Says potty to other grown adults
Complains about being cold all the time
Is on her phone all day
Goes to the bathroom all the time
Only talks about her cat and her grandkids
Wants to leave places early and separate me from my peers
Says good girl if I tell her I turned something in
Expects high schoolers to stop for me
Thinks I am entertained by poop jokes
Talks to my teachers about me without me
Touches me without permission
Praises me for basic things
Won’t let me go outside bc she’s too cold
Emails teachers and admin about my classmates behavior when that’s not her job
Separated me from my entire school during an emergency evacuation bc she wanted to sit on the couch and I had to go with her
Said “that’s so awesome honey!” When a 23 year old officer gave me a patch that said police
Thinks we’re allowed to skip a class if we’re not doing anything or we have a sub
Walks way ahead or way behind me
Won’t let me talk to my friends or my old aide in the hallway
Coughs up gross stuff and spits it in the trash
Made me sit in the front row with the admin for the academic excellence ceremony instead of with my group
Shared medical information
Told me details of her bathroom situation
Leaves used tissues and crumbs in the cart with my stuff
Tries to discipline my classmates
Spits/coughs stuff up in the PUBLIC WATER FOUNTAINS
Horrible odor that over 20 kids commented on (it was from bronchitis and it stopped but still)
Spit in a coffee mug

How do you leave im 18 and can't im in a group home agency who is abusive and tried to take awat my visits and im an adult and i need out get me out of here its killing me i need out i need out my friends don't love me or remember me at all except that i don't want to be here anymore the staff are abusive and they try and control my body and personal life and add strip me from being a adult

my mom said no she won't let me live with her i need out Group homes are a complete scam and they are and will always be treat me like im a slave so that they can make money to support there staff and lie online thinking how great they are and they are not

im not living here i have been abused i will have to move to Kingston which i don't want to be in and i guess who are a friend no oone they just know me and they don;'t care about me what is a family no one i need a family i hate living in a group home

i hate mom she always hangs up on me in the phone calls i just found out that my cousin is dating my friend which hopefully please i hope they stay together because

i want to leave and my mom already asked people if they'd be willing to take care of them but i think they weren't available or something i need help to leave i don't want to be moving to kingston anymore its abusive i need to leave this place so badly i hate it i can't live here anymore

they might stay together and live with me and i need a new place but im afraid i might be living with her but she is going to be in my home please i need to leave so badly we should end group homes group homes are a scam they are a scam they don't support us they just leave us in the prison for autistic people and scam us and support families

who work for them and they should be not allowed and its abusive i need out just get me out i don't want to live here anymore or maybe something else because its not really what i want the memories are coming back from my true love who is dating someone else and i want to leave

Hello, I’m looking for advice- or maybe just some reassurance, actually.

For context, I’m 29, female, disabled (EDS, POTS, C-PTSD), and a victim of chronic abuse (emotional, physical, sexual- you know, ✨the works✨) along with neglect from my childhood from ages 5-22 (My ACEs score is a 10 out of 10 to put it a little more into perspective). I escaped about 7 years ago to live with my grandparents and have been in therapy and have been trying to pick up the pieces of my life since then.

My 30th birthday is in 2 months and I guess I’m just struggling with feeling like my youth was wasted and like I’m running out of time before my joint condition gets worse as I age. While most “normal” people plant a lot of the foundations of their futures in these years, while I had to spend my teens and twenties essentially teaching myself how to be a emotionally stable human person and dealing with my trauma through therapy after escaping.

Because I dropped out of highschool around 16-18 due to my environment, the resulting truancy, and just generally not being able to function, I’m only just now able to try and take classes to finish my GED.

I want to further my education after that into a field that can help others and support myself, and I’m trying to remain positive on how far I’ve come and that I even survived this long- but there’s always that little nagging voice in the back of my head that I was cheated out of my best years and that I’m setback for life.

I don’t know what I’m really asking for by posting this- advice? Positive words? Maybe someone feels similar? Anyone else with EDS that’s in their 30’s and beyond? I don’t know. I’m doing better than I ever have, it just really sucks, you know? And I’m still struggling to deal with the grief.

My name is Katie Furtado, and I live on disability benefits in Massachusetts. Before rent, utilities, car insurance, and medical care, nearly all of my income is already gone—and that's before I buy a single grocery.

SNAP is supposed to "supplement" food budgets, but when your entire income goes to survival costs, there's no food budget left to supplement. I started a petition because I know I'm not alone in doing this math every month, and because the system can actually be fixed.

What I'm asking for: raise income limits for state cash assistance so disabled people can afford basic hygiene products, expand SNAP to be primary food funding (not just a supplement), acknowledge transportation costs in benefit calculations, and fix the broken phone systems at state agencies so disabled people can actually reach someone.

If you've had to choose between eating and surviving month to month, what would actually help? If this matters to you, consider signing and sharing.

I have a crush on my friend. I've known him since I was a baby, but, he was always really close with my brother and we never really talked all to much, until a little over a month ago when I finally reached out to him, after a run in at the movies. He's a really sweet, generous, attentive person, and The gentlest person I have ever met. He volunteers weekly at a local niche animal sanctuary (being vague on purpose lol). And even brought me to their Halloween party, where we worked intensely all day. Which, landed me bed ridden for nearly a week after. But, it was so worth it. I can't drive, so he picked me up and drove over an hour just so I could go, which made it feel even more special.

Since then, he has become pretty adamant on picking me up when we hang out. He knows I can't work, and only have a limited monthly Uber allowance from my parents. And he doesn't want me to spend money when he can very easily come get me. Infact, he even proposed the idea of picking me up once a month so we can volunteer at the sanctuary together. He volunteered this idea himself, as he knew I really wanted to go back but ubering would cost well over $200.

Thing is... I feel really guilty over this. He knows I hate it (having to be dependent on others//feeling like a burden). He reassures me that it doesn't bother him. And that he likes how it allows us time to talk. But, still, I feel like I'm not really contributing enough. I gifted him a cookie, and a metal statue of wolves, and made a miniature fox (his favorite animal) for him. But, it still doesn't feel like enough.

I want to invite him out somewhere, and treat him instead. But, again, I don't have much money. And I can't really think of anything that would be cheap and accessible. Especially since there isn't much to do around me.

I wash I could pay someone (not a hooker) to cuddle in bed for the night. Nothing sexual, I'm just kinda lonely and miss the closeness

I am in my thirties, a wheelchair user and living in my parent's inaccessible house. A referral to social services has been done on my behalf and a social worker has phoned both today and yesterday. I can't answer as I have no privacy and my mum would want to know who I was talking to.

Not sure where to go from here as I am rarely alone for a call and that is usually on the weekend when presumably they aren't working. Just wondering about others who have dealt with social services, my living arrangements are unsafe and I need support that I cannot access

My doctor prescribed me 5mg hydrocodone 3 times a day. This might be seen as minimal, but for me it is a HUGE step. I was prescribed suboxone for a year, before allowing me hydrodocone.

They will reevaluate me in a month, which they will likely increase the dosage.

This is such a big deal for me because ive have had no pain relief at all. I can now take pain medication during the middle of the night, at work when im in pain, and when I need to rest.

I have no one else to share this with, so I have to brag on here. Pray for me, I hope this medication changes a lot of my daily activities.

And I give up. Really. I’m done. I don’t want to try building a career or busting my ass for anyone, anymore. I always believed in pushing as hard as possible, and I’ve lost countless jobs but kept going.

I don’t know how transparent one has to be other than “Yes, I have a medical disability” on the application, on the interview, in the office when it’s relevant— it’s not a secret or something I pretend isn’t there.

So why the fuck would you think someone who discloses that is immune from calling out? “You can’t do that! You can’t call out an entire day!” Ok, delusional ableist— try keeping any employee earning 40% lower than the local income level in a rich city doing scut work. I genuinely hope you have to refill the position 8 times before February and end up doing the job yourself.

Plenty of employers seem to think disability just isn’t there, though. You tell them, and they smile and nod and ignore you. One from last year recently made a claim to my lawyer that says “She was just emotionally unstable- there was no medical disability factor” —my spinal hardware failed and I needed surgery so imminently that I limped from hemiparesis. Everyone saw. I cried while pushing through my work some days. But I made people so uncomfortable crying in the room, that nothing else mattered.

In hindsight, I can’t avoid smirking when I think about how wildly uneducated and dumb that must’ve looked to a fly on the wall. “Ewww she’s crying again. I’m SO uncomfortable. Why is she heeerrrre— gross, I hate it. Killing the vibes” [cries alone in corner while working and says “I’m in pain” when asked].

I guess prioritizing skin & hair care made the limp and involuntary arm movements look like a joke.

I guess I should look like there’s 28 pieces of titanium in my neck causing mechanical weirdness in how I move or experience sensation in my head.

Would it look enough like medical disability if I still needed a mobility device that surgeries helped me ditch? People liked the cane, especially on interviews. It helped them feel like the disability was “real”.

They still wouldn’t hire me, but they were certainly nicer.

Human behavior towards one another in an era with so much shared knowledge and awareness is absolutely wretched.

For the sake of my mental health and remaining physical health, I’m fucking done with the mainstream workforce, and I’m opting to restart benefits that I recently had suspended [again] to try this out [again].

I built a whole career to throw away in 3 years. 3 surgeries, 2 failed- still went back. Never good enough.

I’m done.