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)

It does annoy me when people suddenly get a disability and only then realise how hard it is. I've struggled all my life with a hearing disability and it's only when people perhaps get a bad cold or an ear infection that they start to moan about how hard it is. I know it's not everyone but it's usually the case.

@howtostopthinking you are a gem, your patients must be beyond glad to have you in their side! And well done for achieving your goals and not letting things hold you back. I definitely think I'm going to invest in some kind of card, even if this turn out to be temporary (unlikely). Maybe I'm judging others too harshly? I think it's unfair the onus is in the person with the disability to accommodate the people without? I'm so greatfull for all these responses, after a really shitty couple of days I do feel much better about things xx

Would you laugh in the face of someone missing a leg

I can confirm people do. My dad has had all of the "pull the other one!" jokes, has also had variations on "I bet you're hopping mad" and the classic one about him getting twice the wear from one pair of shoes (because of course you can just stick the left one on your right foot once the right shoe wears out, that won't cause any issues at all). He's a type 1 diabetic so has had many ignorant comments and questions about diet and lifestyle (usually some variation of "thats why I try to watch what I eat..." as if he caused it himself and as if he exists as a cautionary tale to others) because most people don't know the difference between type 1 and type 2.

It does annoy me when people suddenly get a disability and only then realise how hard it is.

That's true of everything though isn't it 🤷🏼‍♀️
We can't fully understand something until we experience it.

@ninnynonny I did try to be mindful of this when I posted. I'm aware how entitled it makes me sound, oh I NOW have an issue everyone accommodate me. I've tried my hardest not to come across that way and I can only apologize, like I said I was aware of some of my issues through my daughter previously and actually worked for many years in brain injury and support for a variety of disability. But I genuinely understand how irritating it must be xx

Oh I wasn't directing it at you. Its just a general observation. Hearing loss seems to be something people find funny or difficult to manage.

@hospedia well honestly that's just shitty, some people use humour to cover being uncomfortable and tbh I've never understood it. Why does someone's disability make YOU uncomfortable that's just rediculous! I suppose working in my field from a young age (actually starting with Leonard Cheshire) maybe I just managed to circumvent that nonsense. I hope your dad told them all where to go. Every single day things happen infront of me and I wonder what the hell has happened to people, but actually looking at it critically nothing has happened and that's what's worse, NOTHING has changed or really happened in years , attitudes thoughts behaviors or what's acceptable. Very odd

[quote MammaMacgill87]@howtostopthinking you are a gem, your patients must be beyond glad to have you in their side! And well done for achieving your goals and not letting things hold you back. I definitely think I'm going to invest in some kind of card, even if this turn out to be temporary (unlikely). Maybe I'm judging others too harshly? I think it's unfair the onus is in the person with the disability to accommodate the people without? I'm so greatfull for all these responses, after a really shitty couple of days I do feel much better about things xx[/quote]
I hope so, my goal is to support and care for as many patients as possible, especially those with hidden disabilities.

Do get yourself a card OP, mine has been a god send tbh. Plus also the attitude of not giving a fuck if I upset someone who's already been told I have a hearing/hidden disability, although I agree it can take time for this to come. You do learn over time to advocate for yourself, it is hard but essential.

My youngest DD who is 12, has the same condition as I do and wears bilateral hearing aids, I got her a card and lanyard too but more importantly have taught her to advocate for herself if I or DH aren't with her. The more it is taught to DC with no disabilities, disabilities or hidden disabilities the better society will be at supporting those with all kinds of disabilities.

It is unfortunate that until people experience this for themselves or on behalf of family and friends things wont change but if all parents and carers support and teach the message of support and inclusivity to their children things can and will change.

@howtostopthinking very very true. Thankfully all of my children have been brought up in an inclusive environment, they all know basic sign language and are very aware of disability in general, I'm proud to have witnessed them in action when it comes to others and disability issues (insanely proud not going to lie). At home my daughter thankfully has a lovely inclusive space. Outside not so much, she's having a terrible time at school. That's a whole different thread in itself which is hugely worrying there's only so much support I can give from home,

Hello MammaMacgill87
I have no disability, hidden or otherwise but I am becoming increasingly aware of how poorly the world is geared for those people who live with an impairment. (What horrible words... disability, impairment...)
I like the idea of a little card to save explaining every time. You can also enjoy watching how people respond... some will decide you are blind and stupid as well as deaf. You do need a suitable comeback for those ignorant people... make them
WHY do people seem to think that if one part doesn't work then everything else is broken too? For example someone I know who has a wheelchair is often assumed to be incapable of pushing themselves, or ignored - they speak to her daughter assuming the daughter is the carer and the wheelchair user cannot think or speak for herself.
I wonder if in part it is a lack of education? I can't remember if there were disabled children at my school. I don't think so... but I don't really notice these things. I see the person first...
I love a bit of accessibility and inclusivity. The DDA meant that buildings were easy to get in and around with a pushchair. That was great when I needed it. Work policy means we get things like subtitles on videos and screen readers that narrate text. It might be a necessity for some but it makes life easier for all.
The token gestures like "quiet hour" cause more problems than they solve.
I don't think of toilets, ramps, wide access barriers, lifts etc as "disabled". I see them as "accessible". Of course a disabled person has priority (and would never park in a disabled car park space). But little changes can make life easier for everyone.
BSL is great too. I'm learning a little bit here and there. Deaf people may be able to read but why should they read all the time when there is a really cool alternative?
We ALL need to fight for accessibility and inclusivity.

I hope you get some answers for why op and I'm sorry to hear the problems you are encountering.

My disability is obvious as I cannot walk without a frame. The amount of people who expect me to walk to the side so they can walk in a straight line is unbelievable. I am in so much pain walking anyway but having to side side is especially painful. Also people will walk across the width of a corridor in say, a shopping centre, to use the automatic doors intead of just opening a door straight ahead of them. People have practically rammed me out of the way.

I'm overdue a smear as I can't face their solution to being able to carry out the examination; to get another HCP in to hold my legs apart! Surely a GP surgery would understand the difficulty faced by disabled women but alas not.

@tabbybeast I completely understand where you're coming from. I'm 34 and going through early menopause and your description of a smear test is all to familiar, as is the aspect of getting around day to day. I refuse to use a cane or walker even though being honest with myself I need one. I'm overweight because I'm in constant pain, I'm not fat for the fun of it. Early menopause has quite honestly ruined my life currently. I'm on antidepressants which basically means I can't cry other thañ that I can't honestly say theyve helped much. I Injured my spine as a child and with the extra weight hormones and general misery I require help more than I'd like,. But to the general public it's another joke and yes they did suggest I have my sibling come in and hold my leg for my smear, wtf is my answer to that. Increasingly my life has become a series of jokes that I just don't get, it's neither funny nor light relief. So add in this new hearing loss I feel fat, sad lonely and judged and quite honestly everyone could go get fucked sideways right now and I'd not care. That's crass and rude and horrid but that's how I feel. This hearing loss has been the icing on the cake for me and I don't want to eat the fucking cake 🤣🤣 I want to go back to my 20s where I was in pain but underweight and socially acceptable. I right now feel bloody awful and isolated and so very angry, but I highly doubt the gp on Wednesday will see these things as real life problems and I've no idea what to do about that xx

I wear special noise cancelling headphones that cut out background noises but pass speech through (which gives my hearing aid a much better chance). Between that and lipreading, I've gotten pretty good at hearing people.

It's astounding how many people, if I don't catch what they said, decide to educate me that I'd be able to hear much better if I took the headphones off.

a) if that were true I wouldn't have spent £300 on them
b) who made them my audiologist?
c) do they really think I'd never have thought of that?

@Chouetted

I wear special noise cancelling headphones that cut out background noises but pass speech through (which gives my hearing aid a much better chance). Between that and lipreading, I've gotten pretty good at hearing people.

It's astounding how many people, if I don't catch what they said, decide to educate me that I'd be able to hear much better if I took the headphones off.

a) if that were true I wouldn't have spent £300 on them
b) who made them my audiologist?
c) do they really think I'd never have thought of that?

What headphones are they? They sound great.

Mine are Bose QuietComfort 35, but there's a lot of newer options out there on the market. They're not specifically designed for hearing loss, it's just a quirk of the way the noise cancelling works (speech is really hard to cancel), so try before you buy, etc.