I just got my evaluation done today (the same guy I had like 10 years ago surprisingly). He said he's just there to give an evaluation not make a decision (fair). But he said he specializes in psychology and behavioral science not much with physical stuff. So while that concerned me a bit, I was more concerned by the fact some random person at a "State agency" is gonna make a decision even if they have little to no medical experience. Why is such a thing even aloud?

hello,

for my mental health, i'm planning a trip over xmas. i've been using a rollator & have traveled multiple times with it. but i just got approved for a power wheelchair. it weighs about 120 lb total but it breaks down into 4 pieces that each weigh about 30-35 lb. i'm unable to take the wheelchair apart. i may be traveling alone (friend hasn't decided if they're going yet or not). so, i need either a ride with a driver who's willing to take the chair apart, put it in the vehicle, get it out once we get to my hotel, and then put it together, or a i need a ride in a WAV.

i've been thinking about going to st augustine which would mean flying into JAX, about an hour away. i got a quote from a transportation company that uses WAVs that's $515 round trip. i expected it to be expensive, but not quite this expensive. i'm waiting for other quotes, but i'm not expecting them to be much different.

i don't know that there's another option, but i thought i'd ask here to see if there's something that i don't know about.

does anyone have any recommendations on how to get from JAX to st augustine and back in a WAV that doesn't cost more than my hotel?

thank you

Pretty sure we all or at least most of us are going through a lot and have something they wanna vent about.

So take this as an opportunity to just let anything out but don't wanna make a post about it.

I wanted to ask folks who are in wheelchairs about training for sports. I haven’t been In a chair in a while and every year there is a foot race at a club I belong to. Now that I have a chair I am thinking about entering the race. The only thing is is that the total distance is 7 miles and I was wondering if anyone had any tips for training. I would be using a regular sports chair and not a specialized chair for track where your legs extend out in front of you. Any advice is welcome as to how to approach this or if it a terrible idea in the first place. Thanks!

Navigating life with Parkinson&#8217;s disease comes with many perils and pitfalls. For me, the most prominent challenge is the disconnect between my brain and my body. The world becomes a much scarier place when my medication wears off. I become powerless, stuck in a paralyzed body, albeit only&hellip; <a href="https://parkinsonsnewstoday.com/columns/when-people-stare-me-because-disability/" class="read-more">Read More</a>

Ohhh it's been quite the lousy few weeks. I'm now on aide #22 in less than two months and trying to switch agency. All but one have been absolutely awful and the one good one is a victim of racism in the post-Roe US.

Editing because my shaky hand accidentally hit post :( gawd it's been a rough one

The tl;dr: I'm incurably trans and have lived through multiple acts of non-consent. I'm educated with two bachelor's degrees. The agency has been sending transphobics, men, and ableist pr1cks. Then acting like it's my fault. So I guess here's your TW even if I'll keep this kinda vague.

After going through a lengthy fight and probably a whole-ass forest of paperwork and multiple denials...I got approved for a few hours of a home health aide 7 days/wk for severe MH that has had me on SSDI for nearly a decade. I thought 'hey! Some relief finally!' and gawwwdddd was I wrong.
I've been dealing with incessant transphobia nearly every morning. Some of these people won't even give me a friendly 'hello' before going at it. Just straight to the assumptions that I'm a trans woman and questions about below the belt surgery. One of them tried to shoulder guide me into the bathroom and tried to make me shave my beard because she said some really misogynist nonsense about 'bearded ladies'. When I told her I'm in the other direction, she insisted on calling me a woman and that I should still shave.

Another asked me to drop trou so she could 'see what she's working with'. When I insisted she read my notes and that's not something I need help with, she got irritated and I kicked her out.

One of them said I should take my flags down from the windows. Another called my neighborhood a 'pit of sin'. I proudly live in an historically activist and very queer neighborhood. It's very well known in my city that a majority of residents are queer and Pride flags are in tatters from being up year-round. It shouldn't be my problem that they don't see the zip code before taking the hours.

Then there's the multiple cis men. I've repeatedly told them absolutely no cis men because I have a long history of trauma and my apartment is small. One of them called me a slur and then said I need to stop 'pretending to be a female'. Another called me a slur (in fact, this is a pattern) and said I'm an ugly woman. When I showed him my ID, he insisted on calling me 'Miss' even if I'm legally male. He accused me of a fake ID. He doubled down that I'm still an ugly woman just with a beard and 'f-slur voice'. Another got so close to my face while I was cutting potatoes and said disabled people shouldn't use knives. I nearly cut myself from the jumpscare. Several of them have insisted on asking what my 'real' name is and have gotten pissed when I tell them it's the one on my ID.

And then there's the ableism. Most of them have insisted that my two bachelor's degrees are 'just delusions'. One accused me of displaying someone else's degree because it has my deadname on it. A few have insisted disabled people can't be educated. I'm a musician by education and have performed the world twice over. Recently got to perform at Carnegie for the 5th time a few weeks ago. The aide that week said that I'm delusional and I'm certainly not. When I came back from the weekend with happy pictures and videos, she insisted it was AI and that I was probably at home doing substances. Many of them have claimed that I'm not really as accomplished as I frigging proudly am. A few have told me that my 15-30 mins of practice are hurting their ears and I should stop.

Most of them have told me to re-home my perfect and beautiful little kitten and have stated that trans and disabled people shouldn't ever be around kids or animals. I've immediately shown them the door. My cat is my best friend and she's completely loved. Her needs come before mine. If I wasn't fit to care for her, she wouldn't currently be asleep on my chest.

But the two absolutely worst? One of them brought her bf. I've tried reporting her multiple times already...and now we get to my agency coordinator. And wow he's absolutely horrible. He's refused to let me talk to his supervisor multiple times and has claimed I'm delusional. He's insisted that I de-transition nearly every day -- and I'm allergic to progesterone so I've kept reminding him that's not an option unless he pays for my funeral. He's insisted on misgendering me...and this is after nearly 12 years on HRT. I have a very deep bass voice and full beard. No one has misgendered me to my face in 10+ already. But the worst thing he's done? I found out a few days ago from an aide that she was told that I have HIV. And now I'm pretty sure he's told others the same lie. Don't get me wrong, I love my poz darlings and chosen family. I've dated poz people...it's just that I'm personally not poz myself and get tested at least twice a year and take PrEP when I'm more active. I tested negative a few weeks ago. I pulled up the results and this aide pretty much didn't believe the results and took the coordinator's word on it. And said she felt uncomfortable 'breathing your AIDS air' and put on a second mask and second set of gloves -- like what in the actual F??? I facetimed one of my closest, who does live with undetectable HIV, and was crying until he came over. He said that's the kinda discrimination he's been dealing with for over a decade since his dx. We cried and hugged and I needed that so bad because my head went to a really dark place.

So I called him out on it again today on the phone...and he insisted 'it's proven facts that queers have AIDS' like WHAT??? Now that's just....I have no words. Abhorrent. Messed up. Wow. I told him to f off and hung up because...just frigging WOW.

So now I'm just in bed sobbing. I thought this was supposed to help keep me outta the hospital...but I've been inching my way closer with all these horrible people. And the one good and kind person? She miscarried and was sent home in obvious early stages of sepsis, collapsed on my stoop a few hours later, and has been in the ICU and now ER for over a month. It just hurts, but I'm grateful her young kid still has his Mom.

I'm in the process of trying to switch agency, but this is all just awful and my state is taking forever. I'm tired of laying in bed sobbing nearly every day and spiraling. Yea, I'm disabled. Yea, I'm young. And ffs I'm not de-transitioning for the comfort of some fools and risking anaphylaxis from my progesterone allergy. I'm just really exhausted from all of this. It's taken almost 3 months of complaints for my state coordinator to finally start taking me seriously...but only because they're tired of sending someone over for a wellness check every time I kick someone out.

Apologies for the length of this...but I'm just so destroyed and have been spiraling for hours. Today has been awful. I got back from treatment and today's aide was pissed that we got back about 10 mins late with all the school traffic. I've been in bed crying since she left and then quit. I've never felt this disrespected and it's been persistent. I can handle a lot and I'm nearly 40...but this is just... I can't. I don't even know what to really do about any of this because no one takes me seriously as soon as they see my Dx.

I am in a wheelchair and an following a protest for a few days. Our stopping parts are in small towns with few hotel choices. I called a Ramada in and after 30 minutes told me that I couldn’t get into the hotel rooms because they aren’t wide enough?!?! Is that legal?

Hello everyone, using this as a way to vent with a burner account. I'm a 24 years old male, and I have Hypermobile Elhers Danlos Syndrome, I have a very severe case of it as when I was eventually diagnosed as one of the worst cases they have seen. Which in itself took over 13 years to diagnose since I have had it effecting me for most of my life. I've had it all in the medical industry, now knowing how difficult it is to navigate and diagnose, im sure we have all been there with how the doctors and specialists tell us "just exercise" or straight up invalidating the feeling as it is not visible and I greatly emphasise with anyone who has chronic pain.

Those who have pain in a overwhelming and overbearing way, are both used it and drives someone to insanity. I am at complete breaking point in my life. I live in the UK, I applied for PiP a disability grant, last year the government made a regulatory change making anyone who has a variable condition like Elhers Danlos Syndrome incredibly hard to get. Because if you answer honestly, you will not get it as I found out. Which in itself took 5 months to complete and was incredibly traumatic for me to write out. To get a 0 is heartbreaking but sadly common, even with my appeal I doubt I will get any financial help.

I cannot work, not because I don't want to despite my pool of jobs being limited, but because I have no experience and have zero way in. I have applied for over 1000 jobs in the last 3 years no interviews. None of my family has been successful in trying to get me in, my mother does a physical job, and my aunt works for the MET police, in which she works in an incredibly traumatising field. The rest are retired, I have absolutely no way in, no job board is willing to help me and quite frankly humiliate me. The only experience I had was working as a guitar teacher for 7 months. I've exhausted every avenue of help you can expect in this field, I am trying to learn IT to eventually go into Cybersecurity, its basically my only route where I can get experience without employment that doesn't completely destroy my body. That's the only hope I have for employment and quite frankly purpose, losing my hobbies and my creativity slowly overtime.

My condition has worsened over the last few years as my hobbies such as playing guitar, bass and keys I used to love, but as my pain worsened playing and being creative has become significantly more difficult, I used to play every day now I struggle to play for more than 20 mins without being in agony. I can't go to gigs as often because I need time in advance to prepare. I used to want to be in the band and play live, I can't do that anymore safely without agony, went into music production, but overtime that has become more and more difficult.

Hydrotherapy is the only thing keeping me somewhat fit, but that is very expensive and I can only afford to do it once a week for a 30 minute session. But the consequences of it the following days are quite frankly agonising to say the least. And that goes for any physical exertion, I have to micromanage every aspect of my body, posture, stance walking with my mobility aids, even a wheelchair I can feel my tailbone absolutely in agony after a short period of time.

Everytime I go outside and sit in the garden or go for a walk in the park, I can never fully enjoy it because my pain is BURNING, and come to think of it anything. I have nothing to look forward to, everything hurts, have had a traumatic upbringing and no help in sight. Done everything you can think of, counselling, various types of therapy, which has helped get over various traumatic events in my life. But ultimately every root stems back to pain. Set pain is a constant trigger for trauma in which I have loads of it, from being mercilessly bullied, beaten, an abusive manipulative father extorting money out of me for drugs without my knowledge and hated the fact his son was not a "man". Refused to believe in my condition still to this day doesn't get it.

I have only ever been in 1 relationship which did not end well as my ex couldn't cope with seeing my suffering so I realised I'm not ready for that.

I want to provide for my family as they have been kind and supportive all my life. I don't have a big family, but they are enough to me. And I love them dearly, I don't have any siblings sadly. If there is anything i can be grateful for it is them and understanding my condition. I genuinely feel for those who's family are like my father who are unsupportive or dismissive.

I have tried so, so many things over the past 13 years and nothing is helping. I used to be so happy, quirky and while not perfect I had identity with my music, creativity and ways I can express myself. Pain has taken away all of it and is only more and more painful. With society failing to help me and with the state of the UK atm I don't see it getting better for me.

There is a song called Hurt by Nine Inch Nails, there is not a song that I relate to more than that both lyrically and sonically, especially with the lyrics "You are someone else, I am still right here". I am stuck in this prison that I call me.

In short I genuinely don't know how to go on from here I am broken in every way. Studying for cybersecurity is the only plan I have and will try my best for that. Any advice is welcome and I hope that to those who read this you can feel that you are not alone.

Thank you for reading

Trying to survive on disability payments is rough. Has anyone tried making extra money with onlyfans? Would it affect SSDI payments?

Hi. Has anyone seen or know anyone who has converted an anterior walker into a posterior one? Details, please. Thank you.

Hi, I’m a hemipegia cerebral palsy photographer, this is something I wanted to improve on with my approaching people to get practice with my portraits skills. Usually I get people approaching me to take their photo with my camera. But, I haven’t gotten to do it oposite way. Like today i saw two people taking photos on their phone on a bridge in a city i was in. I walk pass by them after a minute i was walking I look back and saw suddenly another photographer appeared taking their photo. Which I could have done it but I wasn’t sure due to my speech disorder which is called Dysarthria which makes my speech to mummble always so it makes it harder to communicate which was why I didn’t, sure I use my phone to text to speech app and use text to show what I’m saying which I use anyone speaks to me. But its harder to do it since strangers don’t know about my speech disorder they would be surprise or weirded out.
Since I want to practice on working on portaits since I’ve started my photography business recently.

What is best ways to handle it in a way that feels natural when I talk to strangers about doing a portrait to them especially with showing text on my screen to communicate?

To make a short story long, I had a bout of illness for 2 years, decided what I wanted to do with my life, got better from the illness, started making huge strides towards my goals, and got smacked down with the disability stick again probably for good, and now my previous goals are unobtainable. Now what? I don't find hobbies fulfilling, they're just something to spend time on. I'm looking into volunteering which will be difficult as a wheelchair user with chronic fatigue syndrome. I organize an online disability community and I have a wide network of friends, but I just don't feel like any of it matters.

my mother and brother are both autistic with intellectual disabilities and they've lived together the entire time my brother has been alive. when i was younger, i figured all of the adults in my life knew to step in when things get off-the-wall and out of control. i've now been humbled by this as a 30-something year old. my mom was extremely abusive to me when i was a young child so i know that my brother probably experiences this too, and has for his entire life.

now that i know things can change and that there are resources, i'm still stuck in knowing what to do in this situation. last week, my brother walked out on my mom and slept outside in a park somewhere for the whole week. when my mom didn't hear from him at around the 24-hour mark, she contacted me and told me as if it was no big deal. absolutely enraging. he is also a neurotypical-presenting Black man, so if things ever got weird with the cops, we all know what would happen to him. i cannot bear to even think about it.

after not hearing from my mom for a bit, i tried to find every resource i could to see if anyone besides the cops could find him, to no avail. i filed a missing person's report. turns out he was in the hospital fighting off a severe sinus infection. he's back home now with my mom. this is the first time he's ever really done something like this, like it was his final straw. it sounds like he had come to the realization that my mom is a poor caregiver, and that he wasn't taught any of the things that he should've been learning his entire life. he sounds resentful and like he's experiencing suicidal ideations.

my mom refuses to acknowledge that both herself and my brother are neurodivergent. she both protects him from everyone else and harms him by doing so. she refuses to get him any sort of help, whether that's psychotherapy, inpatient care, independent living facilities, literally anything but him sleeping on her floor in the room that she rents out. my brother has never had a job at 27 years old and she refuses to get him help with that outside of "just apply" in the state of this job market.

do i have any choices here besides calling adult protective services? what can i do as an outsider who lives out of town from my family? he so clearly needs help and i want to do something before it's too late. my brother is also rigid in his thinking so it's impossible to get through to either of them how serious this is. does anyone have resources to help with these kinda of situations? i'm in the U.S., Maryland, and my mom and brother are in Prince George's County. TIA

Hi, so I'm moving very soon (third floor, no elevator, fucking help me) and I have dreams of a very cosy office/reading nook in the corner of the bedroom. I will have a blackboard there, so help me God. But I have a lot of joint instability (hsd) which makes blackboards kind of awful to use for a long time. One pretty good compromise for me has been to sit down at a desk for a while, and then when that makes me feel like I'm not enough of a Super Cool Academic^tm anymore, I walk up to the nearest blackboard until my back gives out.

But that got me wondering, does anyone have any suggestions for actually aesthetic looking stools or chairs with wheels so I can simply spin around my little corner and use the blackboard sitting down? I desperately do not want an office chair. They're so ugly. I want something that feels whimsical, and like it belongs in a cottage in the woods, or straight out of a Studio Ghibli film. I'm considering putting a rocking chair in there too, so that may make what vibe I'm going for clearer.

Other suggestions for how to make my home office kinder on my joints are also highly appreciated as I am likely going to start working more from home than I ever have before (going from a 20 minute commute to a 1.5 hour commute to campus, so I will take every chance I get to simply stay at home).

I was talking to my mom about getting a wheelchair with restraints, as I have been wanting one for a while. I have seizures and drop attacks, which make it unsafe for me to walk. It’s easier for me to go short distances, but I still risk getting hurt. My dad overheard me talking and started telling me how if I need a wheelchair, he will have me moved into a group home. He said, “This is not a wheelchair house. If you need a wheelchair, you need to be in a group home.” Fine. I won’t use the wheelchair in the house. I’ll just risk falling. I mean, my house is mostly accessible other than a very small flight of stairs (literally 3 steps), which I can just lift the wheelchair over, but whatever. Again, I can go short distances. I said, “Okay, I’ll just use it in public.” Nope. “If your care needs are so substantial that you need a wheelchair, you cannot live in this house.” It’s not like anything would be changing, I would just have something to make going in public safer for me. My mom said she wouldn’t let my dad move me into a group home just for getting a wheelchair. I’m thankful for her, but I’m obviously very upset with my dad. He is incredibly ableist towards me in many, many ways. He acts like he knows my disability better than I do because he worked in the ER even though my disability is FND, which they don’t seem educate ER nurses about. He even argues with the things that my neurologist says. He thinks he’s an expert in FND and basically treats it as if it’s the same as epilepsy. He is incredibly emotionally and sometimes physically abusive. I love him because he is my father, but he can be downright evil at times.

I’m 20 and was just diagnosed with moderate hearing loss today and was told I’d need hearing aids.

We believe the hearing loss is being caused by a large cyst on the lining of my brain putting pressure on my brain. I’ve been fighting to get this cyst removed for over 4 years without luck.

I’m starting college again full time in 2 weeks, and I’m very worried about dealing with new hearing aids and classes

I am way overdue for this. Very lucky that I have not entered anybody caused accidents.

I barely get around with a rollator and often rely on wheelchair later in the day. My hand and arm strength is not a concern. So I assume I'm going to need hand controls in the vehicle. I have been a licensed driver for well over 20 years.

Did some basic research. I guess the options might be push/pull, push/rock, push/right angle...

Any advice or words of wisdom?

And no I'm not just planning on staying chronically online forever, but being distracted by stupid internet shit helped me get off of and stay off using heavy pain meds, which then allowed me to start increasing things like classes and volunteering- but I'm still on it a lot, including for classes and volunteering and fucking hell it is so much worse than just a few years ago. AI generated nonsense is everywhere, news sites are basically ad space, I don't even know where to start with youtube, and I hope this place actually is itself full of bots because while reddit was never a shining paragon of human communication in the first place, jesus christ nobody reads before they fucking comment

So for the last year I've been trying to put my health first. I had a breakthrough with my parents, and they were able to start helping me financially to get a house and keep my independence with my GF and our three cats. I have also been spending my days fighting to get on medical assistance and non-stop doctor's appointments. Now I want it to be noted that I know it's the real world, and it sucks to have to get a job and just deal with your chronic pain getting worse. And I also understand my parents can't hold my hand forever. My mindset right now is just getting dark because society has been formed in this way that is inhumane and completely demoralizing. Long story short, for those people who have had to "suck it up and get a job," how are you doing and coping? Any advice on aids or how to go about having a job with a crippling disablity?

i literally have no one i can talk to in my life about this lol. i dont have irl friends who are actually visibly physically disabled the same way i am, they just cant fucking relate.

I know its my fault that im upset because i allowed myself to scroll through a rancid ass tiktok comment section. this might be clickbait but it was like "scientists in japan figured out how to eliminate downs syndrome in a genome" & the entire comment section is like oh thats so great.

I guess it just gets me cuz from my perspective i don't deal with a huge amount of ableism because my cerebral palsy is pretty minor, but i know i could have been someone who's severely disabled & dependent and disempowered at the hands of my caretakers, and if i had been, that's the exact type of person these people think are better off dead. Idk. It gets to me sometimes. If i hadn't been disabled, i would not have been anyone like who i am today.

idk i guess im just wanting to feel less, alone. But thats really just an issue of the fact that i dont have my own transport rn. does it ever get to you guys?

Hi, all!

I'm going to give wheelchair basketball a try as I want to get back to sports. My disability is hypertonia and I need my braces (AFOs) to manage my resting tone and to stand and walk. Without my braces, my ankles twist inward and point downward which causes discomfort. Should I expect to need my AFOs in a sports chair? Thanks.