A woman said that to me with triumph and vindication in her voice after watching me transfer out of my wheelchair, load it into my Jeep, and get ready to drive to work.

Apparently, watching me do all of that independently was all the proof she needed.

**“I KNEW you didn’t really need that wheelchair!”**

I genuinely had no idea how to respond.

Apparently, being good at transferring out of my wheelchair meant I had secretly been able to walk the entire time.

I just stared at her, shut my door, and drove to work.

I think part of it was that I drove a normal Jeep with hand controls instead of a big modified wheelchair van. Somewhere in her head, that apparently meant my legs must work. Never mind that absolutely nothing she had just watched me do required working legs.

And, of course, ambulatory wheelchair users exist too, so her logic would have been ridiculous regardless.

Six years later, that moment still sticks with me, not because I didn’t know how absurd her conclusion was, but because it taught me something I’ve continued to see ever since: even having an extremely visible disability does not exempt you from the disability police.

People will still watch you transfer, drive, work, shop, or do anything independently and decide that those abilities somehow cancel out the things you cannot do.

I can’t tell you how many times since then I’ve had someone see me driving, rush to beat me into an accessible parking space, and seemingly decide that whatever disability I might have couldn’t possibly warrant that space as much as theirs.

We talk a lot about people with invisible disabilities being told, “You don’t look disabled.”
But sometimes, apparently, even a wheelchair isn’t visible enough.

**Edit for context:** I’m a T4 complete paraplegic with no voluntary function or sensation below my injury level.

Image description - Gloria Steinem and Lachi smile and embrace each other for a picture.

I went to see my Rheumatologist today. She looked over my last 2 CT scans, as well as results of a brainwave pattern study that was performed in my house over the course of 3 days. She confirmed that my "falling out of bed" was me having seizures. She also explained that with my blood pressure, having extreme rapid changes as well as my increased forgetfulness, ability to always complete my sentences and confusion over simple things like if I'm making pancakes, I can't figure out how to flip them over for a few minutes. She told me to go to my cardiologist, and I have an appointment in early October. Turns out my brain is not getting the blood flow that it needs to work correctly. My energy is just gone. It's no longer just the pain, keeping me from being able to do things like go on walks, mild, mild exercise etc... I'm out of breath walking to the end of the street to check the mail. She said POTS. I'm getting overwhelmed & I shut down. I take my bp 2 to 3x/d sitting, standing, laying flat, one after another. Office, sitting 100/74 ❤️86, then standing right after 91/45 ❤️102.

Question: I'm doing paperwork for my divorce and want to give my 20 year old, eldest child medical POA. Thoughts? Is that too much to ask of him?

Sooo. I’m in this business startup incubator in which our county supervisor just secured laptops for all of us who need them. He will be at our meeting tonight so we can thank him but the problem that I’m having is the last time I saw him he was shaking everybody’s hands and when he shook mine, he visibly shuddered, quickly moved on, apologized to my superior at the time the following week, and has actively and embarrassingly ignored me for months.

He’s supposed to be at this business meeting that I am supposed to attend tonight but the past week I’ve had two family members and a close personal friend I and I’m just not feeling it in me to be grateful to him without resolving these other issues so in your opinion, Reddit, is it within my right to attend a friend’s memorial service and ask that I’d be able to meet the requirements of this meeting in some other way

Hi, I have cerebral palsy, ADHD, and autism. I’m looking for an inexpensive tech free hobby to keep my hands busy and ideally calm me down. My hands don’t work too well so ideally something fine motor delay friendly.

Hey,

There are so many apps these days that provide access information/reviews.

I'm curious as the peoples favourite and least favourite apps, and why you feel this way.

I'm talking Wheelmap, Zamonos Sociability etc.

I am a 20 year old female. Specially, what kind of content would you like to see represented. I have Cerebral Palsy, but am not limiting myself to just talking about my specific diagnosis. I’m open to going in any direction. My main goal is education and making conversation around disability more common in all of society. Thank you in advance.

Hi

Are there any brands that accommodate the width of an afro. My shoes seem to get shredded pretty quickly when I find a brand that actually fits.

Feeling lonely or bored?

Looking for something you can do this weekend?

Check out these accessible events you could join! Try something new and maybe you’ll find your people.

Access Details:
🧑🏻‍💻= Virtual
👥 = In person
😷 CC = Covid Conscious/airborne precautions 
♿️ WC = Wheelchair accessible 
💵 $ = paid (some are pay what you can)
🤟 ASL/BSL = Sign Language
Async = Asynchronous (at your own pace)

Event Types:
🤢 = Chronic Illness 
🌈 = Queer
🏳️‍🌈 = LGBTQ+ Pride
👧 = Kids/Youths
💕 = Dating
🙋 = Social
🫂 = Support/Grief
🧘 = Wellness
🚶 = Walk
🩰 = Dance
💪🏻 = Fitness
📚= Books
🤔 = Discussion
📝 = Writing/Poetry
🎭 = Performing
🎨 = Art 
🎶 = Music
🕹️ = Games

🧑🏻‍💻 Virtual Events

Most virtual events are open to everyone. See them in your timezone using the links in the comments.

🧑🏻‍💻🤢📚 Virtual Async Spoonie Book Club: The Little Prince [Any time] https://www.reddit.com/r/spooniesocial/s/JcKvqPLWS5

🧑🏻‍💻 Virtual Async Diverge: Wired to Disrupt Summit [Aug 24 - Sep 4] https://www.reddit.com/r/spooniesocial/s/BOeGSK60bV

🧑🏻‍💻🚶 Virtual Async Low-Stim Travel: Tobermory Town Walk | Colourful Harbour, Isle of Mull Sea Views & Scottish Village Streets https://www.reddit.com/r/spooniesocial/s/EiLbW4dG0O

Friday

🧑🏻‍💻Virtual Coworking [Hudson Valley, NY][Fri Sep 4 at 11:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/rczkBS9EKy

🧑🏻‍💻🤢🫂 Virtual Long Covid Support Group [Fri Sep 4 at 12:00 CDT] https://www.reddit.com/r/spooniesocial/s/XwZ2SjTB0E

🧑🏻‍💻😷🫂 “Any A” Covid-conscious 12-step meeting [Fri Sep 4 at 7:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/xu5DHDLUfT

🧑🏻‍💻♿️🩰 Virtual Adapted Heels Dance Classes [Fri Sep 4 at 8:00 PM ET] https://www.reddit.com/r/spooniesocial/s/m5pJnB334l

Saturday

🧑🏻‍💻♿️🩰 Virtual Adapted Jazz Dance Classes [Sat Sep 5 at 12:00 PM ET] https://www.reddit.com/r/spooniesocial/s/m5pJnB334l

🧑🏻‍💻📝 Virtual Writers Group [Sat Sep 5 at 1:00 PM ET] https://www.reddit.com/r/spooniesocial/s/6nJ1NJoqgg

🧑🏻‍💻😷🙋 CC Virtual Weekly Hangout [Sat Sep 5 at 8:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/kNVmWfEm0N

Sunday

🧑🏻‍💻😷🎨 CC Virtual Art Group [Sun Sep 6 at 5:30 PM EDT] https://www.reddit.com/r/spooniesocial/s/EKDF8a31EG

🧑🏻‍💻😷👧🙋 CC Virtual Kids Zoom [Sun Sep 6 at 6:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/WKtPyA8XvC

🧑🏻‍💻🎶🎭 Virtual Karaoke [Sun Sep 6 at 7:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/VwNo1INRGb

👥 In-person Events

Canada

👥😷 Outdoor Saturday Farmers Market [Toronto ON][Sat Sep 5 at 8:00 AM ET] https://www.reddit.com/r/spooniesocial/s/gz5KyuKGve

France

👥😷 COVID cautious festival [Montreuil FRA][Sep 5-6] https://www.reddit.com/r/spooniesocial/s/Yi5OGMjXKC

Germany

👥😷 Covid-Safer Meetup [Berlin GER][Sun Sep 6 at 11:00 AM] https://www.reddit.com/r/spooniesocial/s/nMS0y4KAYV

US - Maryland

👥😷🌈🎨 Queer Made Market [Baltimore MD][Sun Sep 6 at 1:00 PM ET] https://www.reddit.com/r/spooniesocial/s/yoHllSKXeX

US - Minnesota

👥😷 CC Zine Club [Minneapolis MN][Fri Sep 04 at 7:00 PM CDT] https://www.reddit.com/r/spooniesocial/s/k1E24bykq7

US - New York

🧑🏻‍💻Virtual Coworking [Hudson Valley, NY][Fri Sep 4 at 11:00 AM EDT] https://www.reddit.com/r/spooniesocial/s/rczkBS9EKy

US - Ohio

👥😷🌈💪🏻 CC Queer Martial Arts Club [Cleveland OH][Sun Sep 6 at 4:00 PM EDT] https://www.reddit.com/r/spooniesocial/s/6RDRVXF41c

US - Texas

👥😷** **ARCOS Presents: Creative Resistance [Fri Sep 4] https://www.reddit.com/r/spooniesocial/s/BAVyQzekNA

Are you interested in these events?

Have you been to any of them before?

Are there other events coming up?

Share your thoughts in the comments 💬

Find more events and friends on r/spooniesocial

Often at home I’ll be too lazy to grab my crutches when I need to go grab something from another room, so I’ll crawl instead. Or towards the end of the day when I’m getting ready for bed I’ll just suddenly be done with my crutches and crawl instead. Idk why. Anyone else do this?

this isn't me speculating about anything it's just one of those things i've never seen anyone relate to & i'm wondering who else has had the experience

ever since i was a kid (i'm 27 atm) i've had tender spots all over my body, and i don't think it's trigger points or something along the lines of fibromyalgia, because these tender spots seem to have a traceable structural cause (e.g. bilaterial ITBS linked to hip weakness, hyperextension, overpronation, etc.); i used to think everyone had this issue and that when my cats would step on my arm or something they were "stepping on a nerve" due to how badly it hurt

it's everywhere—ITBS, something towards the upper-back of my upper arms (maybe a tendon?), sacroilitis, the insides of my thighs, and more recently i've noticed two spots in my lower back just under the thoracic region, all of it is symmetrical and some of it like the upper arm thing has been present since childhood, so it's not exactly a recent development

for context, i have hypotonia, so it wouldn't surprise me if tendons and ligaments and joints and everything else is always under strain supporting my body and trying to compensate for what my reduced muscle tone isn't doing and are irritated/inflamed because of that (or something along those lines), but most of these things are considered "athletic injuries" (lol) and i've never seen this particular issue discussed by anyone in any disability spaces or any sources discussing it in relationship to hypotonia or neuromuscular conditions

Is anyone else sick of health portals and intake forms that are clearly meant for people with little to no medical complexities? Here are some issues I keep facing:

Boxes or writing spaces that are not big enough to fit the amount of diagnoses or medications I am on

Drop-down menus for diagnoses/medications/symptoms that inevitably do not contain the necessary response with no option to enter "other"

No option for "non applicable" (for example, "are your periods light or heavy?" answer: no uterus.)

Form is only on paper and they refuse to accept it digitally completed or vice versa

And my favorite of all! I have to spend so much time working around these restrictions trying to fill out a form online that the website says "oops! You're taking too long to fill out the page and your login has timed out! Start the whole thing over again, and try to go faster this time!" This one can also happen due to slower processing speed and physical limitations on how long it takes to type or select options on the screen.)

Does anyone have any resources I can recommend to providers and web designers responsible for this stuff, or should I make one on my own? I'm so frustrated always having to deal with this.

(I am not conducting a survey or marketing anything! Just trying to see if this is a common experience amongst my peers.)

I know we all face it. How do YOU go about handling medical fatigue? (I have 11 dr appointments this month)
Any and all advice would be greatly appreciated💗

I'm on short term disability right now for mental health and I'm realizing that this happens every time I try to work a full time job. I have a total mental and physical collapse and end up totally non functional for months while I recover. This time I'm partially hospitalized.

The past few roles I've had have been very high profile, high paying for prestigious companies. Friends and family keep trying to cheer me up by telling me "don't worry this is just temporary, you'll be back to work soon!" And I really want to tell them "actually want I want you to say is 'its okay if you don't go back to working full time, that would be okay, I love you even when you're not high functioning".

It feels like when people say "oh don't worry you're not fat!" As if it would be a bad thing to be fat. When in reality it would be so much better to hear "you're fat and that's nothing to be ashamed of, I love you!"

My husband and I were having a difficult conversation about money and he keeps asking me when I'll go back to work and he finally said "surely you don't WANT to be like this forever!" As if I was disabled because I wanted to be. And I just wasn't trying hard enough to "get better".

He apologized and we talked about how ableist that is, but it's so exhausting to be surrounded by people who all seem to think the best case scenario is that I'm not disabled anymore. Rather than that I'm disabled and that that's okay.

I'm about to turn 30 in a few days and the thought of the future genuinely has me spiraling. I'm on SSI for medical reasons right now, but I depend on my parents (namely my mom) for most everything else. I'm deeply ashamed of this and I wish that I wasn't, but unfortunately with my health being the way that it is, it's unavoidable.

My mom is getting older too, though, and I often find myself frightened for when she'll no longer be able to support me the way that she has. I'm so, so thankful for her in my life and the way that she's helped me. I can truly never repay her for this, and I hate how selfish it sounds of me to be worried about this.

But I can't help it, and so this often also leads into thoughts of how I don't want to live past a certain age because I can't handle my care and I don't want to, either. I'm completely burnt-out. It's a struggle to go about my daily life let alone all of the other things that life involves. I'm not meant for it and I'm too tired to do any of it. For instance, today I'm expecting a phone call from SSI for my yearly review and I'm unbelievably stressed by this. If I can barely handle something as easy as that, how in the world can I handle anything else? I don't want to. I'm too tired.

Not to mention that my mom has her own health problems, too, and I'm getting a little worried lately about her memory as of recently.😟 It truly, truly terrifies me and I don't know what to do about it. Most of the times I feel like a lost child searching for someone to take me by the hand and lead me along. It's pathetic. I want to be a ""normal"" adult, but I can't, and so I feel like I'll always be a child and nothing more.

Can anyone please give me any advice for how I'm going to survive in the future, should that be in the cards for me? I really don't want to, if I'm going to be honest, but I can't do anything about it because it would devastate my family and I don't want them to have to live with the guilt or the sorrow.

Most of the time I wish that I could just retire somewhere amongst nature and live out the rest of my days in peace and quiet. I fantasize about this often and I wish that I could make it my reality. Life is so depressing and everything only seems to be getting worse and time moves on.😔

Sorry for the long, somber post. I needed to get my feelings out and I would just really appreciate any advice/input/kind words. Lately all that I do is feel sad and cry and I wish that I could have a shoulder to sob into.

So physically I suffer from multiple sources of chronic pain that essentially makes the pain whole body as well as dysautonomia and CFS .

Most of the day I'm in bed. When I get up I'm usually immediately out of breath and it takes a couple minutes to clear up. My heart races, brain fog. I've not passed out yet but came close many times. I've had some falls. I can get around the house on my feet although it's a struggle. With a cane I can walk a little in a store.

The longer I stand the worse the pain gets, I break out in sweats, my heart rate and BP go up substantially and I get dizzy.

I can't do physical therapy cause of my CFS so exercising is out.

I'm basically stuck at home. The bus stop is too far of a walk

I'm thinking a power chair would get me to the bus stop and around where I live. It would be extremely liberating. But since I'm still somewhat ambulatory I wonder if it's overkill and there's another answer.

I tried a rollator for a week and it didn't work out. I ended up needing the chair in it too much and basically never got anywhere

I'm 48m. I have a lot going on. Autism, depression, anxiety, OCD, chronic pain, CFS and dysautonomia.

My parents are aging and next year they've decided to sell the house. We all live together. I also have a couple friends living in the basement. I'm on the edge of panic. My friends will be fine if this goes through but I won't be. Where I live is expensive and i can't even afford a room. Moving is a possibility but the only place I can go where I'd have any support is across the US.

I live in a red state and any help with affordable housing is impossible to get. All the wait-lists are closed and only open every few years.

My health is very poor and I need assistance sometimes. That's also an issue. I don't need a direct care worker but someone who can help with cleaning and keeping a few things on track cause my executive functioning suck.

So what do I do at this point? I need to find a place that is supportive in some ways but according to my state I'm not disabled enough for a group home or assisted living but I'm clearly too disabled to live without some kind of even just small support.

So what do I do? I'm thinking about hiring a caseworker but I don't know who to call

Sorry for the big rant folks, I'm at my wits end

So I've always been in the world of disability but I've never gotten to the point of genetic testing myself

So I have absolutely no idea what to do,or not to do

Ie I have some childhood records that could support it,do I need to bring them,can I just take a photo or is it my word ect?

It's for a specific condition but can I ask if we add in more tests so we have a clearer picture? (Specific tests)

Can i have the appointment and they decide to reject me?

*It's ultra rare,I'll be the 50th known if it's positive**

I've started to assess in my dreams if something will be painful, I realised it when I had a dream where I was offered a dream job that I wanted in the dream and I genuinely thought (in the dream) "hmmm but will this be too painful?" ... I didn't even have the pain in my dream... Does anyone else experience this?

I'm still fighting with getting proper pain relief because it's literally consuming and controlling my life and health professionals just don't seem to believe me or take me seriously.

It's causing really bad mental health issues and I'm ngl I'm a little scared to tell my health professionals this because they've already tried to use my mental health against me being given pain relief before.

They've recommended physio which didn't go very well the last time but I've signed up for it because I'm willing to try anything at this point, and I'm on pregabalin and Naproxen for the pain ... Spoiler alert it's doing nothing 🙃

It makes me so angry that we have to pay more for things people compared to people who aren't disabled. Like the touring company of Beetlejuice is coming to Akron Ohio. I would LOVE to see it. Tickets are only $38 each so I think we can swing that for the two of us. Except I wear a prosthetic leg, am still getting used to it and I don't know if I can handle the stairs so I look at disabled seats. $112 each! That is out of my price range so I guess we won't be seeing that show.

I can accept living in hard mode. I can accept there are things that take so much more effort. But it is not fair that I should have to pay extra for being disabled.

Sorry my husband usually listens to my rants but he is at work right now.

hello! I’m a 15 year old boy with a physical disability, I have had severe chronic pain in my left leg since birth. been to over 20 specialists with no answers so I just call it chronic pain. for some background its like been a 7/10 pain every single day of my life but I still play a sport and Just push through because otherwise I will get depressed (only Mentioning the sport because sometimes people look at my post history and say I’m not disabled cause I’m an athlete)

so a few weeks ago I was talking to this girl I’m friends with who was recently diagnosed with POTS. sometime in the conversation she brought up disabilities and the conversation went like this

her: “yknow your so lucky”

me:” what why?”

her: “because you dont have a dynamic disability like me, i will be completely fine with barely any symptoms for weeks then have a horrible week where I can’t do anything, your just in pain all the time so you know what to expect. Also you were born this way and never had to experience how traumatizing it was to lose the ability to do things because of having pots”

after that I kinda snapped at her because I was fucking pissed especially because she has very very mild Pots too (her words I don’t wanna be like saying she’s barely disabled she describes it as the most mild thing ever) like I would give anything to have some days where I wasn’t in pain! Also I was mad about what she said about loosing the ability to do things, when I was younger I wasn’t able to participate in recess and they had to lay out a fucking mat for me to sit on and watch the other kids play, I grew up having to explain to all my teachers that I couldn’t participate in half the shit we were doing because of my lack of athletic ability. I kinda feel like it was wrong for me to snap at her but also like who tf says that

A lot of non-disabled people look down on you for not having a job and living on disability because they see you as “lazy” or as “bumming off the government.” They tell you that there’s no excuse for not working because employers are legally required to provide accommodations. Meanwhile, when you do get a job, some employers don’t want to be bothered with accommodating you and act as though you shouldn’t even be working at all if you need accommodations.

To be clear, I do have a part time job now and enjoy working. But when I was unemployed, living off disability, and job searching, this is just something that I noticed. And the unwillingness to provide accommodations happened at some of the previous jobs I've had.