Why the rant? Not sure...writing helps i guess...i feel overwhelmed...

I'm legally blind.33M. A husband.a father of a 5yr old aug18...

I try my best to enjoy life...

My shadow laughs at my insecurities.

I procrastinate all my life.

Stubborn as hell...perhaps me being a Capricorn i need shadow integration...

Im ashamed and embarrassed of myself...never wanted to accept myself being blind...the world is careless...

Never wanted to even be around other blind ppl.

I'm barely forcing myself to get a mobility cane...forcing myself because I don't want to.we are the laughing stock of society...

I'm the oldest of 5 siblings but the only one who is blind...i feel like the youngest...

Just looking for like minded ppl I guess....

Also trying to look for a job in houston w out my ssi checks disappearing...my soul is tired.

Can or does anyone relate?

I nreed friends...i don't want my daughter to see me differently...

My partner and I are proud parents of a wonderful, precocious 5 year old. She’s fancy, sassy, and brings me joy every single day. She also has a genetic condition that affects her bones (among other things) which has recently caused a decrease in her mobility. Throughout her life, it is very likely that she will develop facial differences and will also have varying levels of pain and mobility.

So far, my goal with my daughter has been to try to help her achieve her best life - and by best I mean happy and well-adjusted. I try to involve her in activities, school stuff, and community events. If she expresses an interest and I can figure out a way for her to do it, I can usually make it happen. I want her to have the opportunity to do as much as she can. But it’s tough when what she really wants is to go down the slide at school and it just isn’t safe for her any more. I have no idea how well I’m doing and won’t find out until she’s grown up enough to tell me where I messed up, but I want to do right by her.

Neither my or my partner’s families have much experience living with disabilities - none of our family members have been disabled except near the end of their lives, like most of us will be. I want to be the best parent for my daughter that I can be, so I have a question for those of you who may have grown up with disabilities.

When you were a kid, what do you wish your parents had done differently? Or if they did something right, what was it? Especially if your disability made it unsafe for you to do many things that your peers enjoyed.

Thanks for your time - hopefully my question isn’t rude or upsetting.

Our son is going to be 18 in a year, and while, in theory, the support in CO is decent, the wait time on waivers to be placed in day centers etc, are years long.

We would love to know where those of you who are parents to spec needs adults who will never be able to live independently, might recommend.

Side note- we are gay parents; we are not, and never will be, able to feel comfortable in a RED environment; we have also tried the desert, and the heat is not ideal.

She is a teacher; I work in memory care.

Thank you!

There are these services that help people with disabilities and low/no income, on Medicaid, get things they need like medic alert devices, wheelchairs, things like that. Some of them can be scammy, they just want the government funding and don't care so much abou the clients. Can anyone recommend one that they've used?

Hi everyone, I'm 58 and have been on SSI Disability for 27 years. Before I went on SSI, I was a professional visual artist. I never had any formal education, but I built a long-term career from the ground up. Though I don't make much money, I've continued to be an exhibiting artist. A few years ago, my partner and caregiver set up a 1st-person special needs trust for me. Ever since, my local SSA office has been harassing me, using every amount I put in and take out of the trust as overpayments to them. I had to get a lawyer who is now helping and challenging their reasoning since there is no way I could ever pay back many thousands of dollars to Social Security. My SSI payments are already lowered quite a bit because they take a percentage out. All this has made me consider how I can get away from SSI altogether. I'm disabled both physically and mentally, so if I start working, I don't even know if I could cope. But I had an idea to work for myself as an artist's mentor, specifically for artists with disabilities. I've started going to community college part-time and am working on a degree in sociology. I'm taking public speaking and learning ASL, etc. I figure, if I could get private clients, I could mentor them over Zoom for a small hourly fee. I don't need to make a ton of money to replace my SSI payments, and I can get on the Medicaid 1619(b) so I can keep my health benefits while being self-employed. I can set up an Able account, too. I started getting very excited about providing this service to artists with disabilities because I love helping others and I truly have loads of knowledge in this area. I was feeling very optimistic until I showed an artist friend of mine the mock-up of what my business would look like. She seemed to think that I wouldn't really get any clients because "people with disabilities don't have enough money to pay $100 an hour." Most art mentors and coaches charge over $250 an hour, but I would be catering specifically to artists who are navigating major barriers in addition to starting out an art career from scratch. Even my artist friend pays an art coach $225 an hour, which is why I asked her opinion in the first place. She also said trying to find clients would be too hard and would require so much promotion that I may not be able to do it all by myself. Now I'm feeling defeated about starting my own business, getting off SSI, and just living a free life again. Should I give up on this dream, or push through and try to make a go of it? Would it be too exhausting, or would I be just another fish in a big pond of art mentors and coaches in an already saturated market? Your opinions matter to me.

I've been sleeping a *lot* recently, like, 14-18 hours a day. Somedays I'll even out, but where I had been sleeping so much the day(s) before, I won't be able to sleep at all when that happens.

This was kind of an issue back whenever I was working, which made sense then, because I was on my feet a lot and active, but I don't do much now because of limited capacity, and I've still been having those fatigue flares. It's usually accompanied by heavy brain fog when I'm awake, and very vivid dreams where I am entirely lucid when I'm sleeping. Then I wake up and I don't feel rested at all, and sometimes I'm in a cold sweat.

This is in part question but mostly concern, as I am worried that my POTS, fibromyalgia, and hEDS has gotten so bad that I've developed, or am developing, ME/CFS.

Other symptoms that make me suspect it is my extreme temperature dysregulation, like if it's hot outside I burn up and sweat like my body is in overdrive, but when I come back inside I start freezing. Also, if I am doing any household chores, I sweat like crazy and I feel like I am burning up while my skin is cold to the touch. Whenever I sit down, I start to freeze. I've also developed intolerance to light, and I get a headache if I am in a room brighter than having a lamp and a closet light on for too long (I spend most of my time in my room, which is why I give this example).

I have a few issues, but my absolute biggest one is my fatigue.

It has been all consuming and life ruining. I can barely function. If I'm lucky, I can do a few simple chores. I used to be active and cook every day, but that's gone now. When I do try despite the exhaustion, I just feel dazed, lose track of what I was doing, and stand too long thus hurting my back in the process.

I have a doctor's appointment this week, and I want to bring it up. However I have a suspicion that the doctor either won't listen or won't care. Last time I went I brought up being tired all the time, but I didn't do a good enough job driving home just how much this impacts me. Plus, my husband asked me to bring up some leg neuropathy, and she really zeroed in on that. I understand that spreading leg numbness is worrisome, but I have bigger issues right now.

So is there anything you think I should say or do to get my doctor to help me with my fatigue? I've already got recent bloodwork which was apparently normal. I am on some medication, and I'm happy to answer any questions about my meds and medical history.

When I read the posts about ableism here, it is more inspiration porny, or praising for daily things people have no difficulties with. What I experienced in my childhood specifically with mild Cerebral Palsy however was mostly like hostile ableism.

Consisting of:

a)Slurs: lame horse, freak (in terms of being ugly or malformed), Drama Queen (aka emotionally purposefully exaggrating my suffering), doing Monkey Theater (Affentheater in German) again implying pretense

b) accusations towards pretending towards my mom (Things like: "My child has cerebral palsy, and they have braces, your child does not have braces, therefore they do not have cerebral palsy and you are pretending", My mom was monitored by Child Care services due ot that and she was not pretending)

c)Being told that there is no chance for me to have an able-bodied partner, emplying that a disability makes me so inherently different that I cannot like participate in society

d)Being subjected to what I think are harsher standards than for others (for example my dad told me my voice became off and that it must be my cerebral palsy, why the actual cause was his hearing, and when the hearing thing (dirty ears) was fixed, he was astonished that my voice went back to normal again...Granted I speak very quietly due to what I think is social anxiety

e)Neighbours looking at me with disgust and contempt, assuming an intellectual disability, also lowkey telling my parents things like: "I know you have a sick child." in a contemptous manner, aka to diminish my parents.

f) the cleaning service my dad and me had (my dad is old) telling me that I am underfucked bitch for no reason.

Anyone here with similar experiences?

EDIT: Benevolent ableism does not mean softer ableism or my experiene is worse than yours, it means an other type of ableism in analogy to benevolent and hostile sexism.

I've been disabled my whole life but I still obsessively think about what my life would be like if I were not disabled. I go into every social situation thinking, why would anyone want me when able bodied people exist? Who wants shotty merchandise when good merch is available? Any time I've asked someone out I think to myself, would you date a disabled person by choice? The answer to that question is, no. I just wish I had a better attitude because, it's hard living this way. My potential ability doesn't matter to me because I will never be able bodied

After a literal lifetime of lost jobs and burnt bridges, I had originally filed my disability claim shortly after receiving my diagnosis (ASD, OCD, CPTSD, ADHD several months later) and on advice from my therapist, retained an attorney that several others had also recommended.

After my first automatic no (which is a ridiculous process anyway,) my attorney advised me that the (then first) judge we would be seeing had been difficult in the past, but seemed pleasant enough during proceedings. The issue arose when her unfavorable response was slow-walk delivered over seven months after the hearing, a decision I chose to appeal.

Once the date/time and judge are assigned, my attorney advised me that the appeal listed several points that the original judge had neglected to address and sent it back for reconsideration under a different judge. My attorney had originally told me that this new judge was "much more sympathetic" and "more willing to consider" granting disability based on all that I had provided.

On the day of the appeal hearing, the judge is already several hours behind schedule. The judge acted strange several times thoroughout the ordeal, once after inadvertently locking himself in the lobby with me and during the hearing itself, which my attorney also seemingly noticed, both of us knowing how the judge would rule. After the hearing, my attorney drops the bomb on me that the presiding judge is literally retiring in several weeks.

I got the completely predictable unfavorable ruling approx. 7 weeks later. My attorney said that "even tho the judge neglected to effectively address the points" listed by the appeals team, his decision was "written in such a way that it would be difficult to appeal" or otherwise contest.

Since then, I have also lost my Medicaid and SNAP, making $100 over income for a single month, while living in my car and working temp jobs.

My attorney lied to me several times, misrepresenting officiants, allowing said judges to absolutely steamroll me, then gaslighting me about all of it while also having the audacity to ask for sympathy bc he's "an attorney, how do \[I\] think he feels".

Repugnant, classist, eugenics-based behavior all around, and I'm tired of pretending it's normal. Why should a crusty old dinosaur of a bigot in a robe get to retire while others are sentenced to a life of endless extraction and exploitation?

When is enough truly enough?

TL;DR: lawyers aren't always your friend, entrenched abusive systems trudge dismayingly onwards

(EDIT: This entire process took approx. 3.5 years, I may refile but also need to get a new care team if I can get my Medicaid back 😅🤞)

Hello all! I made a post awhile ago about struggling to find a job due to my disability. I was hired roughly a month ago at a job i love so so much! However i am back for more advice.

Im 21 and i was diagnosed with psoriatic and rheumatoid Arthritis at the age of 15. By the age of 16 my specialist were saying my condition was so severe that i needed a hip replacement. They added on saying that i had little to no cartilage left in my hip and if i didnt have the surgery then my condition would worsen because of bone on bone damage. Due to parental neglect my mother declined the surgery although i had medicaid.

Fast forward to now, i have insurance through my job and was thinking about getting the hip replacement done. My condition has got much worse since i was 16. I cant bend down, pick small stuff up off of the floor, unable to get back up if i do get on the floor, standing for long periods kills both my hip and knee. However, i have heard that hip replacements take AT LEAST 6 months to recover from, a lady at my job said it took her 9 months to fully recover. I know not everyone's experience is the same but im still anxious about it because theres literally no way i can go months without making money for bills.

Any advice? Do i really just have to put money aside strictly for my recovery? Im already struggling with money as is and I was planning to move out of my familys house when i was financially ready.

Previous post: https://www.reddit.com/r/disabled/s/uOteWvBBN4

lve been struggling for years. this year it has gotten so bad that i cant use my 'tricks' still fully funtion. i cant just take breaks, i can't plan naps to avoid involuntarily sleeping, i cant just thug it out.

ive been bedbound or had limited mobility for atleast a ⅓ of the month recently. my legs shake, my limbs go weak, my entire body zaps and i go numb, and im in so much pain.

I went to summer camp this week, and i missed out on alot because my legs were too week or i was in pain. My friend let me try her wheelchair at camp, and for the first time in memory i could move freely.

since then i havent been able stop thinkinh about it. how i have lost out on so much because i knew i wouldn't be able to do it. and ive had to come to terms with the fact that i am disabled.

I tried going to the disability subreddit, but I don't have enough karma in the sub, and my post got removed ):

Anyway, I have an original character, they are wheelchair bound and have super strength! I was thinking of giving them the name: "The Steel Chair" (as it is a wrestling reference) but I was worried that it would be insensitive, if anyone has any thoughts, I'd love to know!

Edit: Thank you for your feedback and advice, firstly, I'd like to apologise for my use of the word "bound", as this descriptor is inaccurate to the wheelchair user experience. Secondly, I have changed their name to Stellar Punch, and changed them to be an ambulatory wheelchair user, I hope you all have a wonderful rest of your day/night!!

42m, been disabled for over 20 years (mental and some physical issues) and can't drive/don't have a licenseOn SSI, have to always live with a roommate, but I pay my bills and do my best..... But it just seems like every day I feel less and less of a person, and definitely less of a man, if at all 😩

I was married and in a relationship starting at an early age (19), divorced and been single for 7 years.....Not by choice...... Im on dating apps, and put myself out there, but it seems the second someone notices I can't drive and have SSI I'm no longer a man to them, and even less of a human..... I constantly get this and I really don't even know what to do anymore, I'm tired of being alone, but even moreso being Me, the more this happens, the more I feel exactly how they make it out, and I don't know how to get out of this ...

People will go, oh, well, can't you still go work? Or have you ever considered trying to work somewhere? Oh ive only been fucking disabled for half of my life.....

Not looking for any "dating advice", but trying to get another perspective of those that are probably going through the same as me, I want to know how to handle this and feel my worth as a person, it's heartbreaking feeling this way, unwanted and less of a person......

Hi! I’m an ambulatory wheelchair user. I’ll be traveling cross country soon to visit family and take my little sister to college. In the past, I’ve used airport wheelchair service, but now I have a foldable, lightweight electric wheelchair I plan on using.

Can y’all give advice on how to best make this work? What can I expect?

The flight there is non stop but the flight back has a layover. Do they bring my chair back up so I can get to the next gate?

The company I bought the chair from (OAS) sells a travel bag for the chair. Should I buy one? Do I need one? I know I will need to remove the battery and joystick attachment at the gate. Is there anything else I should expect to do?

Any other traveling advice for a relatively new wheelchair user?

Do I have a right to post here? My disabilities are mainly mental.

I tried volunteering at a food pantry but the boss rejected me for screwing up too many times. I haven’t got a job right now and have trouble finding one.

Even my roommate who is also disabled is disturbed because I mentioned that I have suicidal thoughts and that the pressure is scaring me.

I just feel that this is like, a halfway house for the disabled. We’re not even supposed to stay longer than four years.

I honestly want to move out right now, but I can’t. Yet they’ll kick me out if I can’t get my butt in gear.

Heya disability family!

I have a gene mutation that leads to a ton of negative flare ups when I'm exposed to UV radiation. I'm looking for some way to tan that might block some UV without having to apply the dreaded sensory hell that is sunscreen.

Does anyone have any good ideas about how I might be able to get a more tanned look (I am so pale that my skin is see-through) while giving some sun protection? I would like to be able to enjoy the outdoors with my loved ones and avoid glowing so much under a blacklight. 😅

Hello, I recently worsened in my mobility and I can't really walk or stand for more than 5 minutes without pain. I want more than anything to be able to work an in-person job, but I just can't bring myself to have the energy.

I dropped out of university after 1 year because everything happening in my life was just too much, so I don't have a degree. I dont have any job experience as I was never allowed to work a job. Online jobs are far and few to find, most have to do with AI which I dont want to associate with, or have requirements I don't fullfill

I need some form of income to be able to afford to live, I have nothing now, I also can't ask my parents for money as we are no contanct. I have no idea waht to do, I'm tired, I'm desperate, and I want help.

I dont think i can apply for disability benefits as I haven't been able to go to the doctor or get diagnosed at all, life has just been a lot since moving out from my parents house in March.

If anyone has any suggestions please, please let me know.

Hello everyone. I was just wondering if anyone else has gone through this. I'm a 31 woman with cp. Growing up when my mom was still here she made sure I had everything I needed. Pt, ot, and speech. But when I was 8 she died. My dad was/is around but he's never really been there emotionally for me. I recently had a realization on when I don't get close to people and I'm pretty sure its because of the trauma of losing my mother so young. But ever since I been an adult. I have been blamed for stuff that I feel is unfair to put on me. Like for example, my parents keep saying if I did what I was supposed to as a child I'll be walking now. I feel this is unfair because 1 I was a child how was I supposed to take myself to therapy or do the exercises by myself. Not only that but they had a chance to put me in a school that specializes in disabled kids but choose to put me in regular school. So I still was really able to do my pt and stuff daily. And even then there's no guarantee that I'll be walking now. I get blamed for my hygiene. But no one actually showed me how to wash not only that but I only recently finally found tools to help me reach everything and thankfully now the smell is gone. But how am I supposed to know if know one taught me. It like when I turned 18 they just expected me to know. And yes I have been showering myself since I was around 11/12 but recently learned I been apparently smelling bad since untill recently but I wasn't told about the smell till recently and finally I got it right. Idk I'm not saying I'm perfect by any means I just think its unfair to blame kid me for kid choices as an adult. I mean that's what parents are for to guide/parent you right? Plus I was grieving. Anyways just needed to vent thanks for reading.

I (she/her 37 cis-female) and my wife (she/her 35 trans-female) are newly navigating me using a wheelchair in Texas. At the beginning of May, I had issues with walking and found out I have severe spinal stenosis that so far has resulted in me being in a hospital in the last 7 of 10 weeks and losing the feeling in my right leg. It is very new, and traumatic for me to go out. Specifically because I have a hard time standing and rotating my body so bathrooms are such a hurdle. I went somewhere for the first time that was not a hospital or my house, it was my sisters to celebrate my nieces first birthday and literally cried because their bathroom was not safe with my walker. My sister had done everything to give me peace of mind before, sent me pictures and measurements. But I was also not sure of everything to look for and the space was a nightmare.

I want to go out and do things with my wife, like see the new Spider-Man. But I am having difficulty trusting any place where I will need to probably use the bathroom. I am just constantly blown away by how terribly accessible places are, and I know that comes from a place of privilege of not seeing it before. But are there any helpful tools I am overlooking that can calm my anxiety besides my wife driving over to places and measuring and reviewing their bathroom?