The world still doesn't cater to disability?

[MammaMacgill87]

One week before Christmas I woke with no hearing in my right ear, two days later it's gone from the left too. No one knows why at the moment there isn't a clear reason (it's being investigated)
I already knew how woefully prepared the world is for someone with hidden disability, my daughter being a prime example (she has 22q11.21 deletion syndrome) outwardly she just looks small cute and quiet but the services she needs are never available and the world is big loud scary and definitely doesn't cater to her needs at all.
Back to my aibu? -in saying that people/services/even the doctors surgery are undereducated or very lacking with how they deal with people in general but definitely those with hidden disability.
I explained to each individual that thankfully I can lip read, so in order to 'hear' them I'd need to see their lips.
The doctors has screens, the shop has screens even the taxi has a screen, so I'd take two steps back and ask 'could you please lower your mask and I'll be able to understand'
Woman in the doctors after much huffing and eye rolling, talking AT me with no response obliged, but quickly replaced her mask and so all I managed to get was my appointment is next Wednesday. I don't know what time or with who and unless I can talk someone into phoning for me I just will never know. In the pharmacy same thing, went got prescription explained I'd need to lip read, pharmacist point blank refused to remove his mask, got really mad and then pointed at the back of the box (which I assume was to say read the instructions) again visibly huffing and eye rolling shaking his head AND looking over at another customer. Two separate taxi drivers again even after explanation just got huffy and angry at my lack of response to whatever they were saying, while I was sat in the back bloody deaf trying to figure out what the kids were saying to me
Yes covid, yes masks yes social distancing but my god. There must be other deaf people in my area, they must lead very sad lives especially right now, I know I am. I came home and cried for an hour and couldn't phone anyone to share I was sad because I can't hear and tbh didn't have anyone to call?
So aibu? Or is this all covid related and I just need to get on with it? What if my hearing never comes back? Will people always be this rude? More of a rant maybe but I do feel better for it.
(Oh and a shout out to my boys nursery who do sign as do I for my daughter and who do take the time to talk to me)

If definitely be writing a long complaint to Tesco for that one, that's awful. Sorry you had to experience that x

Unless it involves a perceived lack of revenue most companies don't care what's goes on. With the boom of Amazon and other online shopping I wonder what percentage of sales are actually directly from disabled customers?

YANBU. The world has so many roadblocks for people with disabilities.

A tip to make things easier for now - get people to talk into their phones and let you can read it. It sucks, it’s inconvenient, but it does work.

I'm so sorry you're experiencing this, OP, and I agree that some people can be weirdly defensive and angry about disabilities, hidden or not.

BUT I also think there is a general lack of awareness across society that's more benign. I am losing my hearing, too. I have had a mobility problem for 6 months and am facing never being able to walk again. My DS was diagnosed with two auto-immune conditions this year. But I look back on our previously "normal" lives - we were both 100% healthy, no pre-existing conditions etc. - with some shame. Because although I was aware of and sympathetic to disabilities, I also didn't really think about them. I was just a bit clueless, as disability had not touched our lives, or that of my wider family.

I understand now. So while my and my son's disabilities totally suck, they have also made me a better, more empathetic person. I actually think more broadly when, for example, planning work and social events. I am more considerate of those with hearing loss. I think hmmmm I wonder if that person has something going on when they react in an unexpected way. And I really do think that as a society we need to learn more about disability, maybe in schools, I don't know.

Though I have to say, your experiences today were just people being t**ts! Please do complain to the GP surgery, as there really is no excuse in a healthcare setting to be aggressive about someone needing additional support. (Even less so when you take into account that the wearing of a mask is for your benefit, not theirs, so by removing it for you they're not putting themselves at risk.) I have complained very politely and constructively to my GP surgery about my son's disability, and got a good response (and changed how their receptionists now work), so it is possible.

I sincerely hope your hearing returns, and I'm hugely sympathetic x

Read the story on the bbc website, it's about a lady who lost hearing suddenly too, think the headline mentioned pregnancy too (she was pregnant when it happened) it was a little bone that was the problem

Do you know the reason for the loss yet @eyeslikebutterflies? I've had two appointments at the gp so far and they say it isn't infection, so it's neurological, an autoimmune disease or some kind of tumour!! They want to do injections into my ear drums with steroids 😭 but in reality the auto immune thing makes sense tied in with other issues I have, guess I'll find out on Wednesday!!
Oh and good news my ex called the surgery for me and got my appointment time, he also (unusually for him) complained on my behalf

I’m completely deaf in my right ear, and only have 30% in my left due to meningitis when I was 2. I’ve been deaf for nearly 30 years and I still struggle.

Thankfully for me, people so far are happy to remove their mask to speak, but if they don’t, I have no chance of hearing them properly

Would a typed card make life easier than having to explain it every time? Maybe make people slow down to think a bit more about how they're communicating?

"I have complete hearing loss. Please lower your mask when I've stepped back so I can read your lips. Please check that I have received all the information before putting your mask back up. I will stand back until you have replaced your mask."

Just a thought?

I have much sympathy. I experienced Chronic Fatigue Syndrome for nearly a decade in my teens and twenties. Badly enough to require a blue badge. Other people can be real arseholes and very unsympathetic to hidden disabilities.

Oh god, I went on a Google adventure. Apparently there are links to covid and hearing loss like mine and indeed any viral illness with inflammation!! Damn you google damn you 🤦🏻‍♀️
I wonder if I could set up some kind of petition or group or education surrounding hidden disability where I live, how do you even go about doing that??

Good call on the card as an idea, people do have to focus to read so it might let them register what I mean better (and better than repeating it fifty times)

@Hillarious
I'm not saying yourself but I hate the way people say to me at least you get a travel pass. I have mental health problems that don't qualify my for it. Not have to wait a year of having phsyical problems till I can add it to the higher rate of PIP and get a pass. Then have a very limited amount of stations I can use because of no lifts and still have to ask totally able people to get out the disabled set on the bus. Much rather prefer my life before this when I was on twice the money.

Same with my dyslexia people would say isn't it good you get extra time in exams. I'm like ffs just rather be able to read and write fluently.

Was showing off my trolley to my neighbor and they said prefer my bag, so did I but can't handle only buying one or two items a trip to the shops. And people don't understanding why I get Uber to bring shopping once a well because the shop is so close. When the trip there wipes me out much prefer to spend the energy I have looking after my home.

Think the problem with disability is you have to be or very close to it to truly understand it's limitations.

The one perk of wearing hearing aids is that I get to have a Disabled Person's Railcard, covering me and DH

Wow. i didn’t know this, so thank you very much.

@BarrowInFurnessRailwayStation

I was in Tesco looking for some earbuds. The music in the electrical department was really blaring out. I have autism and adhd and my brain doesn't work if the noise is loud and distracting, I simply can't tune it out.

I turned the volume down and a worker came out and turned it back up. So, my dh turned it back down and the worker began to argue about it. I explained what the problem was and that I'd only be five minutes, but he wasn't having it. I just had to leave. I ordered buds on ebay.

Would it have really killed him to have gone without the loud music for five minutes? The general store music was still playing, so it wasn't as though the store was silent.

I would complain about this, as Tesco have introduced quiet hours for those with autism etc

I know some shops now have quieter shopping hours, maybe suggest that too if yours doesn't.

^^ Part of the problem. How about the shop adapts to the needs of their customers, rather than othering those with disabilities? No one needs music blaring out to shop, why not make every hour quiet hour?

(I know they turn the music up because it apparently encourages people to spend more. Profit is put before people's needs.)

Yes with the music, my local Tesco have the music blaring out now like it's an old record shop.

@JessieLongleg again hidden disability is disproportionately viewed when it comes to the benefits system aswell, I know that for a fact I handle care for a family member with a while host of mental health issues that definitely effect their day to day lives and pip has just been a complete minefield. Only today I got a letter to day they are finally reviewing his case after a terrible review right in the middle of covid where I wasn't there to act his advocate. UC left him with 80quid a month to live on and his pip was cut to 200 pounds a month. It got to bad he was sectioned for two months in hospital because he just couldn't cope. Whole situation is disgusting and don't even get me started on service in the community just terrible

@CorrBlimeyGG

I know some shops now have quieter shopping hours, maybe suggest that too if yours doesn't.

^^ Part of the problem. How about the shop adapts to the needs of their customers, rather than othering those with disabilities? No one needs music blaring out to shop, why not make every hour quiet hour?

(I know they turn the music up because it apparently encourages people to spend more. Profit is put before people's needs.)

I know right? If you make a quiet hour from 10--11am every day, are people with autism all required to do their shopping between precisely 10-11am, even though lots of them are presumably at work or school at that hour?

It also makes the staff even less helpful during the rest of the time. If you want to go shopping at 3pm and there's a problem, you'll be more likely to be told "Well you should be here during the quiet hour if you have such a problem with our music" etc. It's not really solving the problem - it's a sticking plaster approach.

@CorrBlimeyGG I agree with this aswell. It's another way to segregate people. Oh here's a nice quiet hour for you to shop, how patronizing first of all, and secondly NO, make shopping bareable for bloody everyone. Mum's wrangling kids whilst shopping don't want to hear 90s pop music, elderly shoppers, people with a headache, miserable grumpy guys like me (not a problem now I can't hear any music 🤣)

I have hearing loss and someone only lowered their mask recently to say ‘fucking anti mask anti vaxxers’

@TrashyPanda

The one perk of wearing hearing aids is that I get to have a Disabled Person's Railcard, covering me and DH

Wow. i didn’t know this, so thank you very much.

Just need to send in a picture of your brown book when you submit the application. It covers me and my "carer" when travelling.

The only thing I'd take issue with is, is that it isn't, or shouldn't be, thought of as catering to disabilities, but removing barriers.

We've been educated at my work as we were asked to arrange British Sign Language interpreters for an external person attending a virtual meeting. Not only did it enable the deaf person to participate, but when our system went down, most of our team were knocked out of the meeting but not the external people. The deaf person went on to chair the meeting while we got ourselves sorted out.

My sibling had LD, autism, is deaf and has a balance disorder. Her last review they referred her for work training at the job centre. Somewhere she can’t even travel alone (can’t read/ map read etc).
Ended up having to take her while a complain was being processed, so she didn’t lose benefits. Thankfully the job centre then got involved when they met her and we’re faced with the ridiculousness of trying to even teach her to log onto a computer

Isn't that just delightful, I hope you at least mouthed fuck off under your mask, idiots

[quote JessieLongleg]@Hillarious
I'm not saying yourself but I hate the way people say to me at least you get a travel pass. I have mental health problems that don't qualify my for it. Not have to wait a year of having phsyical problems till I can add it to the higher rate of PIP and get a pass. Then have a very limited amount of stations I can use because of no lifts and still have to ask totally able people to get out the disabled set on the bus. Much rather prefer my life before this when I was on twice the money.

Same with my dyslexia people would say isn't it good you get extra time in exams. I'm like ffs just rather be able to read and write fluently.

Was showing off my trolley to my neighbor and they said prefer my bag, so did I but can't handle only buying one or two items a trip to the shops. And people don't understanding why I get Uber to bring shopping once a well because the shop is so close. When the trip there wipes me out much prefer to spend the energy I have looking after my home.

Think the problem with disability is you have to be or very close to it to truly understand it's limitations.[/quote]
It's fine for you to identify something as a perk, but not for others to tell you it's a perk. I'd prefer to be sure I would hear any announcements made on the train or platform.

You're quite right @JessieLongLeg, unless you're close to a disability, you won't understand or be aware of any limitations, so you do have to make a point of highlighting them politely for people who might be overlooking them.

Again proves the glaring inadequate compassion and general common sense when it comes to the benefit system. Although I'm glad to see they actually saw how rediculous that situation was!! Plus how stressful for your siblings and you too!!!