Hello everyone my name is Jordan South I am 23 years old, I live in Leeds and I have special needs along with Cerebral Palsy and Scoliosis please could you all help me out in signing and sharing my petition in helping to provide recreational facilities to disabled adults in Leeds

https://chng.it/7zRfQJxK

Hello,I'm currently working on a project and I'm going to be onboarding people.I'm seeking disadvantaged people to be my coworkers.

• people who have been in prison
• physically disabled but can use hands and is computer literate
• long-term unemployed but desiring to change that

If you happen to be based in London, unemployed and interested in learning more please PM me.

There was a post on r/disabled from u/mjenz1 about the cost of living crisis, but Reddit won't let me post my response so I'm trying here.

People with disabilities follows the medical model, which is that there is a flaw in the individual which causes disability. The WHO's preference is the social model, disabled people, which says that disability is often caused by how society is structured for able bodied people. The only time you'd use people with disabilities is if you were writing an article on psychology, which calls this person-first language. Your topic is within the social sciences this time.

Government emergency funding and a lot of charitable funds will only pay out of their pots to people on Universal Credit. There is a big assumption that disabled people are unemployed. While we are more likely to be NEET than able bodied people, this isn't usually due to choice as study after study shows that the majority of disabled people want to work. These cost of living payments from the government have given people on Universal Credit about month's worth of additional money (for single people), however the PIP payment which is for diasabled people no matter whether or not they're in work is about 1/3 of a month's payment for people on the maximum rate. Another issue is that the Warm Home Discount is only available to pensioners. Again, there's an assumption that people with musculoskeletal pain are elderly, but I've worked with someone who was born with osteoarthritis. I developed arthritis in my teens. I'm decades away from retirement and can feel what the weather's planning on doing in my bones. People with musculoskeletal pain generally find their pain is best between 21-22°C.

Musculoskeletal pain is the #1 cause of workplace absences, so it is very prominent amongst working age people. Bear in mind people with musculoskeletal pain will find it much easier to work from home on bad days, which is an option for far more people now than it was pre-Covid, but now that reduced pain from not having to go outside in winter, travel, etc. will have to be considered alongside whether or not you can afford to heat your home. One consideration in this will be whether or not workplaces are warm enough, as most able bodied people would find 21°C too high for a workday, and businesses may be choosing to reduce their heating to save on costs. Add to this the rising covid cases and the fact those with musculoskeletal conditions which are caused by the immune system (like psoryatic arthritis and rheumatoid arthritis) are on medications that increase covid risk, then more workers are having to heat their home beyond the level of able-bodied people for more of the day because of their disability.

There's the cost of food. Disabled people are more likely to rely on ready meals than able-bodied people because of the pain and energy involved in preparing a meal. The cost of a tin of something like chilli or ratatouille is around the £1 mark in Tesco right now. Remember going somewhere like Lidl or Aldi uses up a lot of spoons (pain and energy), so a lot of us are having to spend more to get our food delivered or to click and collect by using more expensive supermarkets as well as spending money on the delivery/click and collect cost. This may be more of a consideration for people in work due to the fact they have to budget their spoons to manage their work activities and so have fewer spoons for their Activities for Daily Living (if you don't know spoon theory you should read an article explaining it). If you can't move your spoon usage around because of your work schedule then you can't stay up later or do your house activities on a weekend to get cheaper slots. Sometimes when you get home from work you have to sleep, so you have no energy to do the things others are doing to reduce shopping costs. Other money saving tips such as running the washing machine at night are also useless as your Activities for Daily Living have to be done when you can manage them.

Some conditions come with a symptom called allodynia. Essential your skin feels like it's burning or being stabbed if anything touches it. This can be clothing, blankets, or even just resting the body part on a surface instead of sitting up or holding the limb up. If your allodynia is in your torso or your thighs then on a really bad day you'll have to call in sick or work from home since most workplaces require clothing on these bits. Never heard of anyone who has allodynia in their buttocks or genitals but it must be a problem for someone. If you have allodynia then most of these money saving tips surrounding putting on extra layers, an Oodie, or an electric blanket are useless as these things cause you pain. When my allodynia is bad I have to go to bed under my 'cage' which holds blankets off my affected arm, and try to position myself so the least painful bits of my arm are resting on its satin pillowcase, because my arm is a full-on diva. My hair doesn't get a satin pillowcase, yet my arm demanded one.

As well as using ready meals we tend to use more disposable consumables when we're struggling to reduce the pressure on our bodies, such as paper plates. So this is an additional cost able-bodied people can more easily avoid. We're also trying out gadgets and solutions, which often means wasted money because a lot of these things can't be seen or tried in advance as they're all online. My big project this winter has been to try and find a solution to my allodynia, which has led to me buying a cashmere sleeve online which turned out to be ribbed and so useless, and a silk sleeve meant for those with eczema which, again, turned out to be ribbed and too rough.

Our mobility aids and gadgets often have upkeep costs, such as ferrules for sticks and crutches (especially in winter), and charging powerchairs & scooters. We have to leave things like powerchairs & emergency buttons charging all night as they need to be on us while we're awake, so we can't unplug them once they've fully charged. We also have to charge them before they're dead as we need to know we have enough charge for the day/to get out if there's a fire. Also, have you tried getting to the wall socket behind your TV using a wheelchair? That shit stays on standby. Given kitchen counters are often too high for chair users, kettle & microwave plug sockets stay on too. Constantly bending, reaching, and getting behind things is painful, so there's another piece of advice from Martin Lewis that we struggle to take advantage of. TBH a lot of cost of living articles are just lists of things we can't do.

Able-bodied people can drop their gym membership and go for walks or runs outdoors (if you live in a safe area, are a man, can go in the day, etc. etc.) For some disabled people we often need to exercise in a pool or need to use certain equipment to strengthen our muscles. Plus exercising somewhere with first aid trained staff and where we know we'll be safe if we pass out/have a fit, plus someone will definitely stop to call an ambulance if we need one, is a huge consideration. Going outside in winter when you need mobility aids is an issue, my chair struggles on slippery surfaces & I've had to call 101 for help when I've gotten to the point my wheels are just spinning around on the spot before. Plus due to it being a powerchair I can't go out in heavy rain, and when the floor's wet my battery runs down much quicker. With sticks and crutches you start struggling as soon as the leaves start falling, and it keeps going until the UK finally gets a chance to thaw out. So the gym membership stays or you can't do your physio exercises, your body deteriorates, & your pain worsens.

Many NHS Trusts/Boards have stopped prescribing things you can get over the counter. This is all well and good if you need the odd paracetamol, but if you need something like B12 it adds up. Your average bottle of B12 or multi-vitamins contains 2.5micrograms of B12 per tablet. Those of us who were on prescribed B12 were getting at least 50microg per tablet. Anyone want to take a £2.50 bottle of tablets per day? To get higher amounts you need to go somewhere more expensive like Holland and Barrett, and use more of your spoons out of your spoon budget.

That's the part of the cost of living crisis that able-bodied people likely don't understand, it's caused an inflation in spoons too. Before I got my B12 delivered with all of my other meds, organised into a pouch by my pharmacy. No spoons required. Now I have to keep track of a med that isn't in my pouches, when I'll run out of something that isn't in my prescription, go out to Holland and Barrett, work out which bottle is the best deal and still gives me enough to cover my previously prescribed amount (they've recently changed their branding so I had to work this out again), and try to get a childproof bottle open daily. This is costing me energy and physical pain I didn't have to use up before the NHS had to start looking for more ways to save money. Whilst I've been talking about all of the ways disabled people end up spending more money than able-bodied people, I've been talking about how a lot of this is to save spoons so that we are able to work or even just manage our Activities for Daily Living. We've always been in a cost of living crisis when it comes to our spoon budget, where are we cutting corners on our energy and pain levels in order to fit in something we need to do like shower, clean the kitchen, or finish that special project at work? But now our spoon budgets and financial budgets are in a fight to the death (which will be all too literal for some disabled people during the current crisis). Can I spend more spoons to save some money, or do I have to spend more money because I'm out of spoons? On a day you can't get out of bed because you're in so much pain you want to die, can you afford to get a pizza delivered so you can take your meds? When you're counting pennies to get the foods you know you're going to need, can you manage a couple of boxes of cereal bars and water bottles to keep by your bed just in case one of those days hits? How many spoons did you use up worrying about that?

I'd like to write a good ending to this, but I need those spoons to have a shower later.

Hi everyone.

I work for the NHS and we have had a new manager for around 3 months in my department, and I am not the only team member with a disability.

Previously, nobody had to use annual leave for appointments, turn up to work if you can afterwards. In the NHS this is always up to the manager's digression.

Our new manager has changed this, which is within her role. But I have recently moved GP and after putting in a medication perception and I needed to have a review of it with my new doctor before the perception could go ahead. I was low on medication, obviously, so I needed an appointment to go through ASAP. I got the first appointment I could and told my manager (I was also unaware of this change either as no one told me).

This was an appointment directly related to my disability (which I have a diagnosis of), and it does feel like a tax on my health. If I need an appointment related to my disability (which I will) I basically have less leave than anyone without a disability.

I have a meeting with my manager on Monday; I think that it would be a reasonable adjustment, not just for me but other disabled staff members who have talked about it with me in private.

Thank you for any feedback/help.

Hi

Let me first say I am 47 and have worked since I was 19 I am a hard worker and enjoy working. But now I feel exhausted with the number of illnesses I have had over the years and how I am today.

My situation is I have an unidentified illness since my 20s. I have and still am under a lot of specialists trying to figure out what is wrong with me, they believe I have a rare condition.

Over the years I have suffered from ulcers, infections and been in hospital at least once or twice a year.

In 2017 I lost my eye through this unknown condition and spent 3 month in hospital. At this moment in time I am partially blind, suffer from join pain which and anxiety which could be due to long term medication.

I am currently on injections daily for my condition and recently I have started fainting it's rare twice in 2 years.

Ideally I want to go part time with work and get some support. But I have phoned the helplines I am told I am entitled to nothing.

I am outside the rules around disability even though I would say I have a disability.

I am just lost on what I can do as its starting to effect my job and mental well-being regarding money.

Any help would be appreciated.

https://forms.gle/FxaVFizq4TcEx5Na8

I am currently working on a project with our mission statement: "how can you improve transportation for people with disabilities?" For this project to be an actual representation of a disabled person's needs, we thought it best to ask communities such as this. We would greatly appreciate it if you would please take some time out of your day to fill out this brief form!

https://forms.gle/FxaVFizq4TcEx5Na8

Hi community, I hope it is fine if I post this here. If not, I apologize in advance and I’ll delete the post.

I am looking for people in the UK and Ireland with cognitive and/or medical disabilities or conditions (e.g., nausea, seizures, migraines, aphasia, autism, attention deficit, dyslexia, cerebral palsy or maybe one that I'm not mentioning) who would be interested in taking part in a usability test for a big fashion retailer. The goal is to provide feedback on their website accessibility features (or lack thereof) and on how these can be further improved in the future.

The test is paid and it can lead to further opportunities in the field of app/website testing.

If you’re interested, feel free to DM me. Thank you!

Hello, my name is Ethan Wynne, and I am a student at a school in Maidstone, Kent called Sutton Valence School. I am currently undertaking my A-level design and technology coursework, and am completing a project surrounding the 'issue of people with Cerebral Palsy and difficulty with gym equipment'. In the google forms link below, I have compiled together a few questions which would help me out massively in my research. It should only take a few minutes and responses to this form is entirely anonymous. Any help would be much appreciated.

https://docs.google.com/forms/d/e/1FAIpQLSeF_qjdCSIzXgaOLGwRwB-jUSeVIRugleBeYXvr4_QgHC9tlQ/viewform?usp=sf_link

Hey, folks. I've been confined to a wheelchair for the last three months due to some surgeries, and have to attend appointments at the Imperial hospitals (Hammersmith, Charing Cross, St Mary's) once or twice every week. So far I've been using Imperial Patient Transport. The ambulances and the operators themselves are usually great but we've had severe problems with coordination, unexplained last-minute cancellations, and horrendous delays (3-4 hours on each side).

Do you know of any reasonably-priced good-quality private alternatives that I could use? Cabs and ambulances are both fine. Due to the extent of my present debilitation, the service has to include pushing the wheelchair up the ramp, and then bringing it back down.

Thanks a lot for your help in advance!

R

Hey all.

My brother had an accident a couple of years ago and he’s now paralysed from the chest down.

He’s been staying at my parents house since January 2022. Despite my parents best efforts, it’s not the most accessible of houses as it is quite small. He needs his own place as he’s really struggling here but he’s having difficulty finding a place. The council are not really helping, just passing him from one person to another, he’s essentially lost in the system.

He’s been in contact with the Aspire charity but they’re asking for a solid exit strategy after 6 months, which I don’t know what this should be.

He’s losing patience and struggling mentally with all of the phone calls and form filling that is getting him nowhere.

Does anyone have any advice?

Hi there,

My husband has a progressive illness which means we need to have our bathroom changed to a wet room to allow us to continue to shower him in the future. We are currently in the song and dance of having our bathroom measured by the council also while awaiting guidance on if we qualify for a grant.

Anyways - my husband still wants the bathroom to look nice and make him happy when he is in there. Do you have any experiences, pictures or advice in having your bathroom turned into a wet room via the council or privately? It would be good to see what others have done to theirs so we understand what we can be thinking about.

To cut a long story short, I had a bad knee injury which has left me with reduced mobility in one leg. I often struggle to walk/stand, especially over long distances, and I sometimes use a walking stick to help me. But much of the time, I appear as if I'm perfectly fine (even though I'm probably in pain or uncomfortable).

I struggle with stairs and can't use them unaided (without a handrail or someone to help) and I struggle on ramps and uneven ground. My leg cannot bend fully and is very weak, so things like jumping, cycling, running are all not possible.

There are lots of things that just aren't possible for me to do because I can't park closely or in an area without stairs (why do so many car parks not have lifts?!)

I applied for a blue badge but was rejected based on the fact (and seemingly only the fact) that I could walk the distance unaided, which sometimes is no problem for me, but other times, I've been so frustrated at myself and in pain that I've hobbled back to my car in tears.

As far as physiotherapists are concerned, I'm healed because I can walk, but my injury has been life changing for me and it's not something that's gotten better over the years I've had it or likely to ever get better. My GP has never even seen me about my condition, so I have little to no supporting evidence that this thing is even such a problem for me.

I feel so dejected after getting turned down that it makes me feel like maybe I'm not that bad. And maybe I can manage without one, but it's seemingly so difficult because most of the points seem to be awarded based on how many painkillers you usually take (none!) and the walking assessment on the day!

I know a disability is defined as something that affects your life and prevents you from doing things, which is exactly what this does for me.

Does anyone have any advice for next steps or for even feeling less like an imposter for wanting a blue badge?

Hi all!

I'm a young disabled person who's been receiving at home care through a local agency via the council since the end of 2020. I've been having issues with the care agency for a while but something happened at the weekend that has made me so upset that I know for sure I don't want them to provide my care anymore and it has also put me off moving to another agency in case something bad happens again.

I've heard about Direct Payments and employing a PA/carer but I was wondering what the process is like to go about doing this? I'd also like to know of what you feel the pros/cons are of this versus using a care agency?

Thank you! 😊

I’m newly disabled so I’ve been trying to get washing and mobility aids. I’ve tried two different companies and brands but EVERY SINGLE THING has arrived dirty and/or damaged so returned. This seems crazy!!! Anyone else? Anyone know a good shop to buy this stuff from reliably?

Hello everyone, please feel free to delete this post if it is not allowed!

hello! I hope you are all doing well. I am carrying out research into the accessibility of the rail industry and I was looking for some disabled passengers to take part in a quick questionnaire for a dissertation.

the deadline for responses are the 4th July (in two days) so and responses would be appreciated!

the link for the questionnaire is below:

https://freeonlinesurveys.com/s/dwXzk7td

Every piece of data is anonymous and the data will be deleted within 30 days of collection.

thank you for your time 😊survey link

Hi guys, we need do a public research for my final papel. The project is a one hand keyboard focus in being cheap and comfortable.

My question is: if is interesting for you and/or useful.

If you have problems with one of your hands or just have one, and not be bother, please contact me for answer a question. So you can help us help you

Twitter: @morales__vic Insta: @morales__vic

Hi.

Any bariatric patients who spend lond periods in bed? Looking for some mattress advice as my current one is on its last legs!

Any you recommend? Or advise to avoid? Especially for standard UK 4ft 6 double (didn't realise issues I'd have when I bought the bed!)

I've tried asking local dc for advice but got we don't supply as response

Any advice gratefully received

Ta x

Hello everyone! I'm a beginner writer and I am looking for beta-readers for a story I've worked on called "The Old Me".

The lead character is representative of my disability, and there are other characters with disabilities and I want to make sure they are represented correctly, as I can only give the perspective from my own disability.

I want the people with disabilities to be that, people, not just token characters. I want to avoid harmful tropes, but again, I don't want people being “the good guys” purely because they have a disability. This means I have a variety of characters in the story with and without disabilities over the spectrum of morality.

Edit: Disabilities included in the book are:

1. Fibromyalgia, chronic pain, memory loss

2. OCD

3. Dwarfism

4. Amputee

5. Ectrodactyly

6. Spinal muscular atrophy

7. Deafness

​

And of course, any other feedback on the story will be appreciated! Any feedback on how to improve this story or my writing overall would be appreciated I'm mainly looking for general feedback on the story and characters as a whole, with some questions prepared.

Title: The Old Me

​

Some bounty hunts can have life-altering consequences. For young city guard Joan Qro this has never been truer. Having awakened alone in a non-familiar place, he discovers he has somehow lost the last 40 years of his life and memories. Not only has 40 years passed, but magic has also become more abundant in everyday life than ever before. The story follows Joan Qro as he struggles to adjust to this new ageing body, a sensational world of high magic while also following Joan's life before the sudden transformation.

THE OLD ME is a 161K word adult high fantasy with young adult crossover. Based on my home-brew/original setting for Dungeon and Dragons there are comparisons with the Critical Role franchise with the fantasy elements and Six of crows and Crooked kingdom for their themes of family bonds, trauma, and recovery from it. The novel serves as a stand-alone with series potential.

I'm looking for a one to two-month turn-around. If May will work better for you that will also work. Thank you for reading my pitch please leave a comment and let me know if you're interested and thank you in advance for your time!

Content warning: Pain, depression

Hi, my mum needs help getting to and from medical appointments. She is happy to pay, but is looking for someone who will help in and out of the car. e.g. opening doors in hospitals., as well as help putting seatbelts on etc. Nothing personal like going to the toilet, but almost a chauffeur service.

I thought this would be easy to find (pay more and you will get someone to do this) but I don't think I am looking for the right thing.

She can go in a normal car, wouldn't need a chair, but just someone to drive from a to b (and back) and to do odd bits that are too physically strenuous when at appointments.

Thanks in advance for any help

As the title, really.

Calcium growing in to my spinal chord needs sorting out. Should have seen the GP sooner. I'm self employed and drive a taxi which I now can't do so no money coming in.

Hopefully things will go well and I can drive after a suitable amount of recovery time but I have a little family, fiancée and 8yr old who I support.

Apologies if it isn't the right place to ask but my head's all over the place.

Who do I speak to about support? Be that financially, getting a wheelchair for myself, the place we rent has big steps in to the front door and in to the kitchen as well which I can't deal with as I can barely walk on a flat surface. Would I be rehoused? Would my family stay together or they just move me?

I'm calm outside for my family but panic mode inside :|

Hello! I am currently studying MSc Applied Clinical Psychology at The University of Central Lancashire and require participants for my dissertation.

I am investigating the impact of the Covid-19 pandemic on the quality of life and mental health of adults living in the UK with a physical disability.

The audio call will take place online on Microsoft Teams and will last approximately 30 mins and is an opportunity to discuss your experiences of the Covid-19 pandemic (it’s quite informal and more of a chat than interview and you don’t need to put your camera on don’t worry!)

The study requires you to be 18+ and living in the UK with a physical disability, impairment or long-term physical health condition and this includes hidden disabilities or health conditions.

If you would like more information or would like to take part, then please message me!

Thank you for your time!

Hi all, I'm currently feeding into a group to improve the service received by those with disabilities when going through the menopause in the UK. This was after one of my friends recently became blind and really struggled when accessing support through the NHS when she was experiencing severe menopausal symptoms. Any experiences you've personally experienced, or your friends and family have, would really appreciate, as keen to try and initiate change and ensure there is equal access to advice/treatment for all.

Hi everyone,

I'm going to Disneyland later this year and am hoping to get a priority card (which gives access to the much shorter disability queues) as I am autistic and struggle in crowds, especially if confined in a small space.

I'm curious how you prove to have a disability (to any third party company) if you're not on any benefits and don't have a blue badge.

Seems silly that while autistic people are considered disabled under the equality act they are unable to access many of the services put in place to help since we rarely qualify for PIP, blue badge, etc. Disney specifically, doesn't accept diagnosis letters as evidence either.

Is there some magic card I'm unaware of or am I stuck paying for a GP letter and hoping for the best?

Hey there, i'm a third year events management student looking for people to take part in a survey for my dissertation which is "An investigation into accessibility at large scale events in the UK for people with physical disabilities and long term diagnosed medical conditions" If you could take some time to fill in my survey i'd be truly greatful.

https://cardiffmet.eu.qualtrics.com/jfe/form/SV_1NOXgdCKkJlnig6?fbclid=IwAR1ONzfUgYxD-I5wuVWYe4tudydALxqkOXRP6Dr1gYUtT1s8unrgYQD33n8