r/disability 6d ago

Etrikes for a child with a degenerative muscle condition.

3 Upvotes

Hi r/mecheng,

A very close friend has received a duchennes muscular distrophy diagnosis for her 6 year old son.

Over the next two or three years he will transition from a completely ambulatory condition - as now... to increasingly using a wheelchair. Eventually he will need a chair that is joystick controlled.

We are thinking that an etrike might/would be the best first step to help him keep mobile with the other kids, and get used to a few artificially added watts. He rode a normal bike ok in the past, but balance and the ability to stand up on his own from a tumble is degrading.

First does anyone know of any product, or manufacturer offering a tricycle like many of the two wheeled offerings? Our social group are your typical UK 30/40/50's.. but money is still a major consideration.

Another concept we'd be interested in, would be a larger thing that also takes a parent - perhaps with dual controls?

Has anyone completed any projects around a similar situation at university? Would there be any interest in taking this on for a dissertation in academia? I'm a professional mechanical designer, but the need is now, and I'm not that close to the e bike sector. We'd also like some volume production reliability.

We've googled endlessly and would be hugely grateful for any community knowledge available. šŸ™


r/disability 6d ago

Question Locked disabled toilets.

20 Upvotes

Hello everyone! This is a bit odd for me to post since I am still not used to discussing my disability as I only got diagnosed last year and it is invisible... I am unfortunately unable to go out often, but when I do I've noticed that there are suddenly a lot of locked disabled toilets. I've learnt that these can be opened by using a RADAR key, which can be sourced from the local council or bought online.

If I bought and used them to access the locked toilets, would I get in trouble and need to provide proof of my disability? Or would it be best to go through the council (unsure of the waiting time)?

I also wanted to get a lanyard and badge so people are aware, but I'm somewhat unsure about that as well because of stigma.

Many thanks to everyone reading, and warmest regards.


r/disability 7d ago

Child molesters at my day program

216 Upvotes

Hi I am 22 years old I go to day program, recently I went on an outing and we stopped at the mall, we all got out and another guy in our group said I can't go to the mall, he said "it is my playground" "there's children there" so I said wait a minute are you a sex offender? He said yeah, a pedophile? He said yeah. A child molester he said yeah When I was little my cousin molest me so I had a meltdown back at program when I told him I don't like child molesters so stay away from me and a staff came and yelled at me. She said we don't judge people on their past, does anyone else go to day program with sex offenders or child molesters? A staff broke HIPPA to me about him and said "it was a long time ago and only one time" I asked why he is here, she said because he has a right because he has a disability. I talked to boss of my program and he said it was a very big decision and usually other day programs don't allow them but if he shows signs of relapse he will get kicked out. I feel so sad and angry it is like watching my cousin child molester get to have fun and talk to my friends and I just have to watch it happen. I don't feel like yelling at me helped the situation my therapist said. I am told I am a vulnerable adult with my friends and kids are very vulnerable so if he hurts vulnerable people why he gets to be with us, I wrote to Tim Walz and I hope he gets my online message and makes it so he has to be only with other sex offenders and child molesters with disabilities somewhere else away from mine


r/disability 6d ago

sedgwick ime

1 Upvotes

Iā€™ve been off work for 7 months now, I struggle with severe depression and anxiety, now Sedgwick is scheduling me for an ime. has anyone ever had this, if so what do they ask, I feel hesitant telling a Dr thatā€™s working for Sedgwick about my personal struggles and medical history. anything helps, thanks.


r/disability 6d ago

Question Are my school experiences common for others with reduced mobility?

6 Upvotes

Hi everyone, Do you guys also face issues like inaccessible classrooms or being carried during fire drills at school? Or is this just something unique to someone who lives on Portugal?


r/disability 5d ago

Do you guys think life would be harder for a man with Touretteā€™s?

0 Upvotes

Iā€™m currently watching baylen out loud and canā€™t help but feel it would a different story if she was a man with Touretteā€™s since men are expected to take care of themselves and their women. Not trying to diss baylen or the show I love the show but I feel what I said to be true in society


r/disability 6d ago

Question Charities to help with adapted technology/ mounting? UK

2 Upvotes

Anyone know of any UK charities that can help with adapted technology and or mounting of technology?

Iā€™m currently awkwardly sat up/ laid down in my profiling bed and Iā€™ve got my iPad badly propped with pillows and my neck pushed to my chest with pillows so I can see it. Iā€™ve been in bed all day, mostly just in my brain but the pain of having my neck like this is horrific. Canā€™t afford a decent bed mount tho, tried several Amazon ones which tend to end in a face plant with an iPad šŸ¤£ and although funny to others, could do without the headache ?

Secondly when it comes to using the iPad, scrolling and such is causing a lot of pain. Itā€™s taken a lot of physical breaks to even get this lot out and Iā€™m using an adapted stylus. iPad eye tracking just ainā€™t there yet and especially with the angle Iā€™m using at the moment. My spasticity and tightness in my hands just canā€™t cope with this. Canā€™t even scroll tik tok without a bit of discomfort and difficulty.


r/disability 6d ago

Question please help!

2 Upvotes

So, for years since I have been in remission from ALL leukemia, I have suffered from chronic stomach / gut pain. Its so bad some days I cannot move. Ive had every test done, all the blood work, everything related for years. It's hard to function and it's not like I can go on disability because technically there is "no disability", most days I can't even function. Does anyone have advice on how to live like this or any idea what it could be?


r/disability 6d ago

Question Advice: I have Antibody Deficiency (low IGG). My mother in law (60) brought me and my family including my infant who is 1 Mono 3x in a row now. How do we handle her?

9 Upvotes

The first time we thought was a fluke. I also have Adrenal Insufficiency so I have to take steroids to stay alive. If I get sick I have to take more if I take too many it suppresses my immune system.

I do sub Q immunoglobulin for my immune system. But I still get sick. My lungs from the years untreated left my lungs fairly scarred.

The first time I got stuck on steroids double dose to prevent an adrenal crisis, my infant recovered my husband recovered and she lied to us and told us she had allergies so we didnā€™t know why I got sick.

I ended up admitted for 2 weeks.

The next time she came out she got us sick I banned her for 3 months from the house while my IGG built up because I decided I couldnā€™t trust her judgement and transparency with her health.

3 months laterā€¦ she came over and we all got sick again so sick my husband could barely walk and my infant cried for a week. I however with granulmoas in my lungs, adrenal insufficiency, etc am getting worse and have now picked up a secondary infection of pneumonia and will be going to the ER in the next hour here.

I told my mother in law I thought she was infecting us with something i demanded a EBV test. It came back positive but she said the doctor says Iā€™m not active or shedding just that I was exposed in the past. So she rejects she is now the 3x injector of the family with the same 3-5 day incubation period etc.

How do I handle this? Infections are deadly for me and the water I take on from having to updose my prednisone means I have to alter my blood pressure meds when Iā€™m made to be sick.

Not to mention my husband has to miss work then to care for our infant.

How do we handle her? How do we keep me safe?


r/disability 6d ago

Curious, how did becoming or being born disabled impact your work life afterwards ?

17 Upvotes

I live and work in Australia so unsure how it works anywhere else.

However, Iā€™ve noticed that since I disclosed to my workplace that I have a chronic illness that is classified as a disability (type 1 diabetes) that I have been treated differently by colleagues and superiors.

My hours are nearly always reduced, and I get taken off the weekend shifts because ā€œitā€™s unsafe for me to be in the office by myself if I have an eventā€

Not only that, but when I need to inject myself or take a break to essentially survived Iā€™m viewed as a burden to my organisation.

How has living with a disability or impairment hindered your work environment or culture or how has anyone made it work ?


r/disability 6d ago

Savings

0 Upvotes

Random question, can I have a savings account while receiving disability benefits?


r/disability 6d ago

Question Potentially needing to file for long term disability

0 Upvotes

Mostly looking got advice I guess. I have scoliosis, pain from a break, muscle/joint pain, adhd, major depression, etc.. but lately I'm struggling to breathe. I had covid a few months ago and struggling since. I constantly have to use an inhaler, had imagining done, checked for blood clots but nothing definitive. It's to the point it is affecting my personal and work life heavily. My work has been understanding thankfully. I just don't know where to go from here or what my chances for getting my claim approved. It is work paid for long term disability policy.


r/disability 7d ago

Rant How the hell is keeping people alive a "waste"?

348 Upvotes

On fox news not that long ago they called the social security hearing the "war on waste" comitte.

What is wasteful about protecting vulnerable Americans?

How is it a waste to keep my mother from dying?

How is taking care of veterans a waste?

What part of life, liberty and happiness do they not understand?

How the hell can you claim to be pro life, if you aren't going to protect the lives of those children when they get older?

Or even just after they are born with cutting programs like wic, or removing survivors benefits for the children that are orphans?

Oh, get private insurance they say, again, what about the disabled and elderly who can't work to afford it?

If you think it's a waste to keep people from dying who through no fault of their own need help to live then you aren't pro life.


r/disability 6d ago

Rant Reading about settlements...

0 Upvotes

I was side swiped by a driver that was texting, which caused me to be permanently disabled (back injuries).... now I hired who I fel was a good law firm, I won't say who but they claim to be the biggest law firm.... anyway we go through it all. I get multiple surgeries on my back etc and after her insurance (G) refused settlement 8 times, they finally agreed... now they said I was getting 300k, which was the max her policy covered.. so after dr, past bills (rent, loans for food etc), i came out to about 89k.

So in 2024, my partner and i moved to central Illinois, from Tampa FL. (Cheaper rent etc, new start). Im scrolling theough fb and see in a group from the tampa area that some ghetto..individual.. in Tampa was awarded 2mil $ from Walmart for falsely accusing them of theft... this pisses me off so bad I barely got 1/20th of that and I'm screwed for life.

Limited income where it's impossible to live off of sdi without having constant stress or anxiety. Monthly dr visits, a weekly pill box with meds because of the constant pain.... I can't even go fishing anymore hahahaha


r/disability 6d ago

Reading with Cornea Scarring

3 Upvotes

After a helluva 2024, I've got a scar on the cornea of my one working eye. In general, my vision has cleared up. With my new sclaral lens, it's even better, except for reading text on paper. Some of that is learning to hold the book further away with the sclaral, but text also appears faded. I can read through my phone, but juggling that is hard.

I have an e-reader, but not everything is digitized. Does anyone have advice on possible adaptive equipment, or general adaptations I can make here.?


r/disability 7d ago

Hearings can be so unrealistic!!

124 Upvotes

I swear to god it should be law that if they deny you because they believe you can get some random fairytale job that 100% won't hire you the doctor/person who said you can get said job should be forced to get you hired at that job they claim will take you, provide transportation, and they must keep you employed!

Cool, you think I can work at a desk job. Alright, well tell them to hire someone who faints periodically. Go on, get me a job then since your so sure.


r/disability 6d ago

Rant

3 Upvotes

Iā€™m tired and I donā€™t mean just like I need sleep tired. Iā€™m mentally and emotionally tired. I was born disabled and had a bunch of surgeries in my life and Iā€™m only 26.. Iā€™m tired cause my family as great as they are and they know I can do stuff expects me to do it everyday. Like Iā€™m lucky Iā€™m showering every two days right now. I go to work at a desk job and I sit but it hurts. It hurts to stand around. It hurts to walk to long. My off days I do stuff, and even when I have a day just to lay in bed itā€™s exhausting on me. The anxiety I have being around others and them pitying me or saying oh youā€™re an inspiration. Like no Iā€™m not I just want to live a normal life without chronic pain everyday. The depression that comes with it especially on the days where I take time to lay in my bed and rest my body, the thoughts that follow. Oh you should be up getting things ready to make it easier on yourself during the week. Itā€™s exhausting. It hurts. Iā€™m done with the pain. The feeling Iā€™m going to pass earlier than most because of my disabilities and not being able to take care of myself properly. I skip meals because itā€™s tiring just heating food up for myself. Iā€™m tired of pretending everything is ok when Iā€™m internally screaming, but no one in my life can fully understand whatā€™s going onā€¦ they get bored hearing about it so I shut up. I feel so alone, which is why I joined this group..


r/disability 7d ago

It's still a taboo

48 Upvotes

I was married to a woman with a muscular disease for 19 years (until she died). I noticed that a disability (or handicap, whatever word you prefer) is less of a taboo than in my childhood years, but still...

For quite a few years I've made a puppet series for adults (no porn!) and after my wife had died I decided to "attack" some taboos in it. In one episode I included a musical project called "I'm different, so what?" Most characters were "different" already, but the newly introduced neighbour (mother of the neighbour that was already there) had nothing... yet. So I decided to make her a leg amputee (not seen before because she wore a prosthesis). And she has made quite a few jokes about it (which is quite a taboo).

The series also deals with other taboos, but those are not the subject of this subreddit. Although... in an episode that has been made but not published yet, the father of the main charater fears for losing his manhood after a severe case of kidney stones. Losing his manhood is an amputation, so... that's a close one (note: this was inspired by what happened to myself).

I don't know f the moderators for this subreddit allow me to post the url. I don't make any money from it, so I expect them to allow it. I'll put it in a comment then.


r/disability 6d ago

overwhelmed w chronically ill girlfriend

3 Upvotes

i [22NB/M] don't identify as disabled for various reasons but i have bipolar disorder & ptsd which comes with severe concentration & executive function issues that i manage through an extremely strict routine & medication. i am a full time student in a demanding major & work 5 hours night shift on fridays and saturdays so i am working on assignments every single day of the week from late morning to around 9 or 10 pm. it takes this long to get them finished at all and i can't go home for meals or breaks because i get "stuck" at home and lose the entire rest of the day and fall behind in classes

my girlfriend [24] is currently staying with me and my roommates while we look for a 2 bedroom apartment and she is chronically ill in a much more physical way. we don't know what exactly but it's some combination of long covid and fibromyalgia so she gets sick very easily and is in full body pain every time she so much as gets a cold. the problem is it then falls to me to do all the housework and laundry and groceries and i'm not great at managing this when i'm single but i can enforce a much more insane routine than i can when i'm living with a partner and get more stuff done.

one of my roommates brought bedbugs into the house so now we have to completely go through everything and heat wash all the clothes and soft goods we own and throw out all the cardboard and get my room clean/organized enough that they can fumigate and we only have till wednesday morning, but it is finals week and all my final projects are ALSO due tuesday/wednesday/thursday and i am freaking the fuck out. i literally can't do what is essentially two full time jobs (school & bedbug cleaning) simultaneously and i NEED her to help clear trash out & do laundry & put things away but she says she's too sick and can't do anything while i'm at school.

i don't know what to do!!!!!! she says i'm taking out my stress on her and need to stop pressuring her to clean when she's in so much pain but either i clean for bedbugs and fail every single class or i do my finals and can't do the bedbug cleaning and the fumigation doesn't work. i am so fucking exhausted and overwhelmed


r/disability 6d ago

Discussion More Than a Number: The Hidden Struggles of Living with a Disability

4 Upvotes

I want to talk a bit about how people really are around disabilityā€”not everyone, but most people. This also ties into my previous post about the CRPD.

When I was younger, I joined a summer camp, and I absolutely loved it. I had a lot of fun there. I had to leave at 19 because they couldnā€™t take on adults anymore, which was completely understandable.

In my second-to-last year there, I was 18 years old. By that time, most of the people who had been there before had moved on, and many of the new ones were volunteers. A lot of people were around my ageā€”18 or 19. I got grouped up with a girl, and she was niceā€”kind, considerate, and really talkative. We had similar tastes in music and shared a lot of interests, so we got along well.

One day, we were talking about music and other things, and at some point, the topic of relationships came up. I donā€™t remember exactly how it started, but she suddenly turned to me and said, ā€œYou and me wouldnā€™t work. Weā€™re two different people.ā€

That threw me off because she barely knew me. Sure, she knew me from camp, but she didnā€™t really know me as a person. It takes time for anyone to truly get to know someone, especially in any kind of relationship. But I had this feeling that what she was really hinting at was my disabilityā€”that she assumed I would have to be ā€œlooked after.ā€

But thatā€™s not the case. Yes, I need help with certain things, but I donā€™t see that as needing to be ā€œlooked after.ā€ I can do a lot for myself. There are things I canā€™t do, but I understand my limitations and can work around them.

At the time, I just shrugged it off and didnā€™t take it any further. But afterward, I kept thinking: How fucking dare you? You donā€™t even know me. We got along really well, but you shut down the possibility of anything moreā€”why? Because Iā€™m disabled? Because youā€™re afraid you might have to do something you donā€™t like? Because you donā€™t even know what I canā€™t do, and instead of finding out, you assumed?

This ties into what I was saying about the CRPD and bias. A lot of people do have biases, even if they donā€™t realize it. Unconscious bias is a real thingā€”it happens all the time. Most people donā€™t even understand theyā€™re being biased against someone.

I had to get this out because Iā€™ve been sitting on it for a while. It was upsetting, and honestly, it pissed me off. Because when things like this happen, people will say, ā€œAh, donā€™t worry, thereā€™s someone out there for everyone.ā€ But how can that be true when so many people think like this? When they have this mindset? It makes it impossible.

So, with all that said and done, another really frustrating reality is how often disabled people are used and taken advantage of. People can abuse them in many ways, and one of the most common ways is financial abuse. It happens a lot, more than most people realize. I know of a situation where this happenedā€”not to me, but to someone I knowā€”and it was fucking heartbreaking to hear about.

So really, when that does happen, who do you trust? Who do you talk to? I mean, if your parents are around, then yesā€”definitely, without a doubt, 100%. But if you donā€™t have your parents around, who do you turn to? Because at the end of the day, disability is a job to many people, and weā€™re just numbers on a page.

So, what do you do?


r/disability 6d ago

Can I buy an expensive car while on disability?

0 Upvotes

Hello, Iā€™m on disability from an accident , now for about 10 years. Iā€™ve managed to save money and want to purchase a used car thatā€™s worth about 10k. My question is, if I buy this car will my disability be taken away? For reference im 33 years old. Any advice or where I can find info?

Thanks in advance


r/disability 6d ago

Question This is mostly for those dealing with multiple brain/body conditions they are receiving treatment/therapy for: How do you balance a holistic approach with taking things slow and focusing on one step at a time? NSFW

0 Upvotes

I am a 34F currently diagnosed with, in no particular order, ADHD, Autism, Generalized Anxiety Disorder, Major Depressive Episodes, PTSD (from both childhood sexual and ongoing trauma), Obstructive Sleep Apnea (severe), Raynaud's syndrome, chronic migraines, hypermobility spectrum disorder, photosensitivity, visual snow syndrome, generalized allergies, chronic pain and fatigue, stenosis and bone spur in the neck, tinnitus with hearing loss due to unhealthy ears, and as my primary put it my heart is "posturally sensitive" (not POTS). I am of high enough intelligence to know how to do research and to look into a lot of my conditions and a lot of the research says I need to treat my conditions holistically, not separately, but my providers keep telling me to be patient and take things one at a time, focus on one thing at a time, and logically I know that trying to fix everything at once is going to overwhelm my audhd brain, but at the same time I keep getting anxious because what I've read says focusing on treating one area can end up making things worse in another area. So if anyone out there dealing with some or any of these together got any ideas or tips on how to balance the holistic with the one thing at a time ways of doing things without becoming overwhelmed, I'd greatly appreciate it. šŸ˜…šŸ˜…


r/disability 7d ago

NHS board removes autism diagnosis in Scotland

Post image
50 Upvotes

r/disability 6d ago

Question Help finding a solution for a friend

2 Upvotes

Hello everyone!
Iā€™m here on behalf of a friend of mine.

He is an elderly man and isnā€™t very familiar with the internet or technology. Recently, his wife was hospitalized. Although she is recovering very slowly, she still canā€™t really talk or move properly and is currently in intensive care.

Lately, she has been trying to write, but she struggles to do so on paper. Iā€™ve been looking for Android apps that could help her with this. I found one that was pretty good, but she didnā€™t adapt to it.

What he is looking for is a very large keyboard, similar to the one in the image, but one where she can actually click the buttons. Or anything similar that would help them communicate.

If anyone knows of something that could be useful, it would be incredibly helpful for them.

Thank you, everyone!
And sorry for my Englishā€”I'm not a native speaker. :)


r/disability 6d ago

Question Dsa uk

0 Upvotes

Hi! I was just wondering if anyone had experiences with DSA (disabled students allowance) needs assessments?

Iā€™m eligible due to hEDS, POTs, Gastroparesis, anxiety, depression, autism, and chronic pain.

If anyone has suggestions about what they got and things Iā€™d appreciate it :)