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)

Oh I'm so sorry you're experiencing this. Just wanted to say hello as my son also has 22q deletion, also doesn't 'look different' and it's been so hard. Many sympathies.

@roughtyping wow that's amazing to meet someone else!!! Well not amazing but you know what I mean!!! My daughter really doesn't look much different as far as I can tell, she is disgustingly cute though 🥰

@MammaMacgill87

For sure I'm one of the people that hit he is headlines as waited 2 years for PIP and 18 months for ESA to be sorted and it nearly killed me. First time around lost teeth and not enough nutrition. Then again at lockdown they stopped my PIP after a renewal and was just on basic ESA for 18 months due to the NHS not working fully and dismissing my pain complaints etc due to the sterotype of mental health I can't walk property now. All the mental health services was give me another mental illnesses as wasn't coping. The way people get surprised when I tell them what I did for a living before just show how disabled people are viewed as inferior.

Agree so much. Am hearing impaired. Masks are a bloody nightmare. If you say you are deaf or hearing impaired, people still don't know what to do to help. I say "I need to lip read you" and mime them removing their mask. If you do it repeatedly plus cheerful smile, it normally works. (I smile to look helpful, I often feel bloody annoyed).

This thread makes me very sad and angry (but not surprised)

Service providers have a legal duty to make reasonable adjustments under the Equality Act. This includes at the very least training their staff to interact respectfully with disabled service users.

A lot of these incidents amount to illegal harassment. Please do complain, and make a fus if you can (e.g. over traditional media or social media)

... I hate how the media seems to cherry-pick which protected characteristics are worthy of attention.

@MammaMacgill87 I know what you mean! I joined a FB group when we first suspected and found someone whose child has 22q who lives pretty much along the road and has mutual friends - incredible for such a 'rare' condition. I hope your daughter is doing well and I hope you're managing ok with your own issues just now

It’s maddening when people who should know better pull shit like this, presumably a gp receptionist and a pharmacist have come across disabilities before.
My ds wont use a white cane or a guide dog because when we’ve tried (and I mean teams of people for months on end) he has suffered way more discrimination than he suffers just not being anle to bloody see.
When a runner ran between him and his guide dog (a bloody massive retriever in full luminous harness) I let go with both barrels and they explained to me that he should stick to the grass for safety.
Inclusion (or lack thereof) is maddening. Disability is the category you can find yourself in without warning, people should have a vested interest in making it better!
Rant over, last thought, my ds had god awful “inclusive” PE lessons with the others not able to access the regular activities. Him and a girl with hearing lost spent the whole time playing video games in a cupboard and we’re utterly delighted when the school suddenly freaked they hadn’t been seen for an entire term.

I wear hearing aids
I honestly think people don't have a clue how to help people who can't hear as well
They just don't know even the simple things to do to help eg looking at them etc
It's very hard

My friend who is deaf had a small laminated card that she had made up
It’s has something like this
Thank you for reading this
I am deaf - can you please remove your face mask so I can read your lips
Thank you - Her name

She said it made a massive difference in people being really helpful
With face mask people can’t understand people properly but she said pretty much most people are willing to help once they understand what the problem is

I have mobility impairment and would be so much more "able" with a walking aid, but I'm afraid of abuse and discrimination if I make my disability visible. Especially as I'm fat, so people assume I've brought it on myself (rather than gaining weight because I can't bloody exercise!)

I wish I'd appreciated my ability more when I was fit and healthy, but of course you never know what you have until it's gone.

@MammaMacgill87 my hearing loss was caused by a viral infection, 8 years ago so not covid! But basically any old viral infection can do it, and it's highly likely that covid (a virus) triggered both my DS's auto-immune conditions. I can hear OK but struggle in groups, pubs, noisy shops - anywhere there's a lot of background noise. And I rely on lip-reading, although ironically I hadn't realised that until we all had to wear masks and I started not being able to 'hear' people!

As for the poster who said shops should quit the loud pop music ALL the time, not just in 'quiet hour' - yes please! I mean seriously, who on earth actually wants to listen to that dross? It inhibits my hearing but it offends my taste more than anything

The thing about hearing loss is that it is largely invisible.
And when you tell people, often they think it is funny to say something along the lines of “what? I didn’t catch that”
Ha bloody ha.

What other disability is it “amusing” for complete strangers to make fun of? Nobody cracks that sort of witty response when I’m on crutches/in a wheelchair.

As someone who has grown up with a severely disabled family member and now also now have some unrelated difficulties of my own, I think that one of the reasons that disability (and also illnesses to some extent) are ignored is that the general public don't want to think too much about difficulty. It's a bit like, we all know that awful situations are happening throughout t he world, genocide, war crimes, famine, natural disasters etc but if we aren't close enough or it's not personal to us, it's painful to keep all of these things on our minds. I think people think like that about disabilities. People don't want to think it could be them or their family. If you ask them they will say all the right things, but straight after they won't change their ways in any real way. They pretend that the worst could never happen to them, but at the same time, minimise all sorts of invisible illnesses, pretending they either don't exist or can't be too bad. Unfortunately unless something in particular happens to draw attention to a certain issue, it's hidden and forgotten, and generally, those in the worst situations are struggling to get by day to day and don't have the means to lobby those people who can really make changes. That's why choosing the best politicians to represent us is so important.

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.

This ^

I don't want to go shopping in just a one hour time slot once a week. I want them to turn the loud music down. People will buy food regardless of whether there's music playing. It's the only supermarket in the area. Sainsburys in the next town manage not to play it loud.

@TrashyPanda there was a thread on here not that long ago about type 1 diabetes. It was staggering just how ignorant people were of the condition - and unfortunately also plenty of people making "jokes" about it. I also have a friend who has a life-threatening peanut allergy: his ex-boss used to find it funny to throw peanuts across the office in his direction. Which could have killed him (he pointed out that his epipen may buy him time for an ambulance to arrive but it was no guarantee, his allergy was so severe). So sadly people will make jokes about anything they like if they think they can get away with it, or if they want to make themselves feel superior.

They don't look superior though: I always just think, what a twat. (And am happy to call people out on it if I am a bystander: I have become very thick-skinned recently!).

@trashypanda 💯 agree on that one. Why is a joke, why is it funny? Would you laugh in the face of someone missing a leg or make a joke about hopping? No you bloody wouldn't or if at least hope not. It's very hard to go from just floating through life (trying to ignore people because generally I'm quite insular and like to be left alone 🤣) to suddenly being a bit lost openly mocked and for everyone to be so damn angry at me all the time. That's what hits the hardest, why are you so angry with me? Oh I'm sorry my hearing loss has effected you so bloody terribly that you're mad about it!? It's genuinely upsetting I feel like a little kid again failing at something and upsetting the adults

I am deaf, so I sympathise. You have to learn to insist politely. 'I didn't hear that, please write it down/repeat it/talk slowly'. Some people are just shits: ignore them, it's on them not you. If they don't comply, say it again. If they still don't comply, you start to get stroppy. Train yourself not to pretend you've heard when you haven't, although it's difficult.

Oh god I remember as a child having to see the audiologist and he would talk with his hand covering his mouth

Wtf?! He’s a doctor, specialising in hearing conditions and he would communicate like that!

Again what's worse and what I'm struggling with personally is that I already knew about these injustices through my daughter's situation, I got frustrated on her behalf and often spoke out about various things. So you feel this blindsided fels a bit selfish or indulgent if that makes sense? I do however understand the out of sight out of mind aspect and that of course untill you experience something personally it just isn't on your radar. However particularly the 'professionals' or the pharmacist and the gp receptionists really aught to at least pretend to be better. The taxi driver fair enough, we aren't face to face and can be obnoxious at the best of times but still!?

I'm partially deaf. I wear two aids and got them when I was in my early 30s.

I've found masks difficult but haven't yet met anyone not prepared to lower theirs to speak to me. I have a sunflower lanyard and a card on it that says I'm deaf and how to speak to me, which I flash if someone doesn't seem to understand what I'm asking.

I completely agree that there needs to be more Deaf awareness (and other disabilities) taught. BSL should be available as a subject in schools (not Makaton - completely different and not a language in itself) and all public workers should have to do disability training annually, a bit like having to do child protection and data handling and stuff. The fact it isn't standard even in 2022 is terrible.

I think that most people don’t have any idea of how disabilities can affect others, but I do try to be understanding of that. However, what I do get upset with is if they continue to act badly when something is explained.

For instance, I went into a restaurant and needed to check whether they could cater for me (allergies). I also have to wear hearing aids, and also lip read, and couldn’t understand what the manager was saying to me at all. I said that I needed to lip read and – from a good distance away – asked if they could pull their mask down.

She suggested we went outside, great idea. But she still refused to pull down her mask, and seemed to think I would be able to lipread better in the open air??

@thelazytoad 🤣 yes I often find the open air helps my eyes to see through a mask, excellent haha

I was born hearing impaired. Generally a lot of people (not all) are arseholes, even the ones who have been told about my disability. I am a student nurse and it is seriously concerning the amount of HCP's who get an arse on when I once again have to remind them I am hearing impaired and turning away from me while wearing a mask and speaking in hushed tones means I can't hear what they are saying to me.

Don't even get me started on people who 'jokingly' say 'what' to me when. explain I'm hearing impaired, like I've never heard that before FGS, they're not funny or clever it just shows what a dick they are.

OP, I have bought a card that I have on my Uni and placement lanyard, its bright blue and says Hearing Impaired, please be patient and speak clearly. You can also get ones that say deaf etc. I wear it and hold it up and point to it until I can hear the person talking to me.
It's not too bad for me as I do have hearing, especially when wearing my hearing aids, however with masks and people being impolite and not speaking loudly or clearly even after being explained and asked to I do struggle.

The one good thing that comes from it with me is that I can support and advocate for hearing impaired patients when I am on placement and I have had the pleasure to do so many times. I can see the relief in the patients face when I explain that I understand and will communicate with them in any way that makes it easier for them.

That should say, 'I do have SOME hearing'.

@MammaMacgill87
I had something slightly similar happen a couple of months ago although i have fortunately recovered some of my hearing loss. I now wear hearing aids and with them i can hear relatively well however with masks, especially on women, i find it a problem sometimes. I have a little card i carry which literally says 'Hidden Disability I cannot hear you clearly with your mask on'. I have shown this a few times and people have been quite accomodating if im honest.

If i cant hear them i simply say in a stern voice i am hard of hearing and cannot hear you clearly, repeat what i want and then say thank you. Is it ideal, hell no, and i think it opens up a much bigger conversation about social awareness, learning of basic sign language in schools, alongside other languages, and how we treat and deal with those with hidden disabilities as because they are hidden most people dont even realise they are there and its the age old thing......if you cant see it it doest exist!