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)

My dad is hearing impaired and his world is so hard to navigate.

I agree with you. I have no hearing in my left ear and can struggle to hear what people are saying if there is too much background noise going on.
I've found it more difficult with people wearing masks because it also sounds muffled, so I've had to ask people to repeat themselves. It does make me wonder how hearing impaired people manage a lot of the time.

Yup the wheels move incredible slowly compared to other “rights matters”. A cake shop can refuse to do a cake for gay couple (or whatever the case was) yet as a wheelchair user I can’t get in 80 local shops and it’s no big deal. No one else sees the discrimination. Even hospital and doctors seem woefully prepared for even the basic adjustments for Disability.

That's so sad OP! I can't imagine how hard it must be to communicate when you are deaf and people are wearing masks. People just have so little tolerance. I would consider contacting PALS, I've found them very helpful and read good things about them from others. Email them, explain your situation and that you don't know what time your appointment is or how to find out and hopefully they will sort it out for you.

Despite modeen progress, much of the world/society is still inaccessible to disabled people. One of the most depressing realisations about it is that most inclusion and accessibility measures are offered at the convenience and goodwill of non-disabled people, as soon as there is a chance they might be inconvenienced or it appears that disabled people are getting a 'perk' that they can't get then that inclusion very quickly disappears.

Can you imagine trying to learn and socialise?
Ds has bilateral loss and at mainstream secondary with a deaf unit (there name for it) - everyone has to be masked. I sent a message on parents what app asking them to chat to their kids explain that he needs to be able to lip read and be patient. The response was very positive. Also some took their time to ask the school how they are helping the children with hearing loss - this was acknowledged in an email the school sent out explaining how they are trying to help. But it is still bloody difficult.
Btw other pet peeves 1) hearing aids are just that an aid. They do not give him the same level of hearing as someone without loss. They amplify the bit he has 2) shouting or slowing down is worse as they distort the sounds 3) in the vast majority of cases hearing loss does not equal learning difficulties. Even if he did talking to him like the village idiot is rude.

Oh and wind your neck in if I lower my mask in a public place so I can talk to my child .

Thank you

I feel better now

YANBU Most of the problem in our experience with hidden disabilities is the complete lack of patience that others have. The issues we've encountered have been almost all exclusively because the other person(s) didn't just take a mental step back and give people the space they need to explain/communicate their needs without stress.

This would help a whole host of hidden disabilities without even the slightest 'formal' adjustment.

My parent can no longer speak, however they do have a speech assist device. The amount of people, including medical staff who won't wait for them to spell out what's needed is so disappointing - it's making them withdraw even more from the world earlier than their condition warrants. There's also a substantial amount of people who think my parent is just utterly stupid - they can hear and think fine, it's just that MND has stolen their voice!

Mind you, we've had trouble with people ignoring the wheelchair too so it's not just hidden disabilities that get the short straw. It's a poor show all round.

The one perk of wearing hearing aids is that I get to have a Disabled Person's Railcard, covering me and DH. It's also great fun to tell them in the building society that their loop isn't working (and they've no idea how to tell if it is or isn't).

But you do just have to not be embarrassed by repeating that you can't hear because of the background noise, or because you can't see their face, or because all you can hear is the radio next to them or because, or because or because. A lot of the time, people just don't realise how hearing loss impacts on you and the sounds around you.

As a PP said, a hearing aid is no replacement for good hearing. Those of you with good hearing, do treasure it.

Mind you, we've had trouble with people ignoring the wheelchair too so it's not just hidden disabilities that get the short straw. It's a poor show all round.

My dad is in a wheelchair. I can't count the number of times we've been in the lift, the doors have opened, and people are standing directly in front of them leaving no room for us to leave. Then they continue to stand there waiting for us to exit the lift as if he can somehow float the wheelchair over their heads, I almost always have to ask for people to please step back and make some space.

Then there are the people who think a wheelchair makes him unable to function as an adult or to speak for himself. Ordering a coffee: directed to me "would he like milk?" I dunno, why don't you ask him? Buying something in a shop: "would he like a receipt?" I don't know, ask him. At a local attraction: "is he alright there?" No idea, ask him.

And don't get me started on the self-appointed blue badge police who seem to think they can diagnose a worthy disability vs an unworthy one with just a glance. I get out the car "do you know you've parked in a disabled space?" Yes, thanks.

Given that the whole narrative about masks is that we are wearing them to protect others, it seems particularly churlish to insist on wearing one when the person you are talking to has waived their right to that protection in order that they can actually hear you! If the receptionist was that worried, surely they could have given you an appointment card or similar rather than leaving you without the information you need.

I'm sorry that this is such an issue, and you are right that there is so little put in place for anyone who doesn't fit the narrow definition of 'able'. People whose lives are already made more difficult by an ableist society shouldn't have to add campaigning to their workload to access the same services and facilities that most of us take for granted.

Absolutely this!! My daughter in the end didn't actually have hearing loss (she was just non verbal and didn't talk untill she was around 6 years old) no at 10 years old het speech can be confused and very quiet. People speak to her like she's an idiot or a dog, she's actually very smart and gets so upset over it all. Schools in particular really lack support or diversity when it comes to any for of disability. I remember when she was about to start school the educational psychologist came out for a chat and said and I quote 'oh she's not special enough for special school, she'll do fine in mainstream'
I actually asked her to leave. Her journey withing mainstream school had faired no better. Because she's quiet and doesn't cause an issue she's often ignored or forgotten, has to repeat herself so often she just gives up. Now if the teacher could sign after 6 years of her being at damn school perhaps she'd be doing a tad better. That's what I'm saying aswell I've know about these problems for years but it's taken my hearing loss to have genuine first hand experience and actually I'm sitting here boiling angry. Reading all your replies and realising we aren't alone in it.

I don’t know why clear masks have not been made more available.

I also don’t understand why bsl is not taught in schools and training offered more widely to people in services and statutory agencies dealing with the public.

And just to clarify about the mask scenario, I am masked always I never leave without one and I do stand further back before asking people to lower theirs. You'd think if these people have finally taken on board the health and saftey of wearing a bloody mask that they could stretch their brains to someone needing to lip read. I absolutely agree with the poster that said it's tied to peoples lack of patience also. I'm so sorry to hear of some of your stories. It makes me worry even more for my daughter as she gets older she's starting to realise she's different and it's awful to watch, selfishly I also worry for myself, if this loss is permanent I better buy some more big girl panties and maybe a neon sign saying 'i can't bloody hear you'

Yep, it's horrendous. My 7 year old has a significant auditory processing disorder. Masks have been incredibly difficult for her as its really limited her world.

We experience issues between my DC and their needs being hidden far too often

Totally agree with you op. I have worked in 'inclusion' for a while but disability seems to be the one thing they're not including for apart from huge corporates who want to get their stats up.

We still have a long way to go in terms of accessibility and acknowledging disability.
I think one issue is often collectively people just don’t even think about it. Not maliciously, but there’s a lack of awareness for what accessibility looks like and some people just won’t notice because the world is already set up for their needs.

I've accidentally reported your bloody post instead of replying to it! I'm so sorry!!
What I wanted to day was I completely agree! Bsl could be a fairly universal language. Makaton is taught in most nurseries now but seems to stop at primary school. It's should be mandatory in education and throughout the NHS. Signing has also been proven to improve literacy and speech in hearing children in later life too

People seem to be very impatient these days

The world was made for able bodied and neurotypical people. Its hard trying to get society to understand that sometimes concessions, accessibility, and patience is needed. I don't know how to improve this, I always speak up, but that's not enough.

It's pretty bloody obvious though that you'll need to task your mask off if someone is lip reading.

Really sorry to hear this OP. Please write to the practice manager to complain. It's not on

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'd have asked first and explained why. I don't think I'd expect customers to fiddle with controls. I know some shops now have quieter shopping hours, maybe suggest that too if yours doesn't.

@Hospedia

Despite modeen progress, much of the world/society is still inaccessible to disabled people. One of the most depressing realisations about it is that most inclusion and accessibility measures are offered at the convenience and goodwill of non-disabled people, as soon as there is a chance they might be inconvenienced or it appears that disabled people are getting a 'perk' that they can't get then that inclusion very quickly disappears.

Yep. And often when you suggest small improvements that could be made, they're not interested.