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Original poster

Face masks and hidden disabilities

167 replies

Firef1y72 · 04/06/2020 18:29

So I'm guessing those of us with hidden disabilities such as autism are going to have to wear some sort of huge badge or lanyard now if we want to use public transport.

I've tried using a face covering, I last less than a minute before the sensory overload starts to kick in. I can't wear my glasses that help me see, so wont be able to wear a mask. Cant stand things over my ears.

So I've been trying to get used to wearing a running buff over my mouth/nose. It's not happening, feels like I'm suffocating and no way I'd last the 40 minute bus journey in to town, without going in to sensory overload.

So if (and it's a big if) I am going to be exempt then I'm going to be even more of a social pariah than I am now with my stimming. The world just seems to get more dystopian by the day.

OP posts:
Original poster
Firef1y72 · 04/06/2020 20:23

[quote JoanieCash]@Firef1y72 I have sympathies but not sure you should be using PT if you can’t tolerate a mask. As difficult as that sounds you’re increasing risk to others and does your right to go into town on a (non-essential) trip, trump others rights to be kept safe.[/quote]
But surely there is going to be a time when I am going to be "allowed" to use public transport. I live in a village, 7 hilly miles from the nearest town/hospital/dentist/non food shops. Will I never be allowed to go to these places because I dont drive??
Will I not be allowed to go to the non essential shops when they re-open because I dont have a car??
The buses in to town are virtually empty, in fact I'm in shock when I see more than one person on them.

OP posts:
Bizawit · 04/06/2020 20:25

The solution is not to make it mandatory. Not sure why everyone is finding this so hard to grasp?

itsgettingweird · 04/06/2020 20:27

Moneyless we also don't use public transport. Ds wont get on a bus. He feels like you. He says anyone can sit by him and he feels trapped.

He will use a train if we go long distances because you can move carriage if you feel uncomfortable.

People really struggle to understand the constant rabbit in the headlights feeling. That fight or flight.

Although ds also thinks social distancing is a fab idea and said it should be made law. Forever. And he's been advocating it for years and can't believe we all only just caught up HmmGrin

Comefromaway · 04/06/2020 20:30

i don't know what the answer is. It's certainly going to make getting to college interesting for my autistic son.

But despite his difficulties and it is going to be hell for him, I agree with the fact that masks should be worn.

YouSetTheTone · 04/06/2020 20:33

@ThisIsMeOrIsIt I wear hearing aids too and rely on lip reading a lot. I think I’m just going to wear my hair up when necessary (usually don’t) so people can see I wear hearing aids so at least they’ll be aware of why I can’t hear if they’re talking to me. Hopefully it won’t often be an issue - I can’t really think of many occasions in the past few years when I’ve genuinely really needed to speak to/ hear someone when travelling. So much information is relayed visually these days.

Sigh. This shitty new world we’re living in.

Idroppedthescrewinthetuna · 04/06/2020 20:34

I think I have a mild case of some sort of claustrophobia. I actually struggled to wear anything but vest tops for many years due to feeling restricted, i used to keep my coat undone all winter. 🥶 I can now wear jumpers. Scarves are a big no no. Face masks to me will feel awful. I have to catch a bus to work. I have already decided that face masks are necessary to stop/slow the spread. I have opted to walking just over 2.5 hours to get to and from work. I will try to train myself wearing one without the panicky feeling, but I think that will take time.

Idroppedthescrewinthetuna · 04/06/2020 20:40

Please don't think I am saying what I suffer with and autism are the same. I can try to teach myself to wear one, I know autism you can't just get change certain things. I just wanted to say you are not alone, there are lots of reason why face masks will be hard for people. But death from this disease is so much harder hence me not challenging the guidelines but me getting around it. Is it possible for you to walk?

Original poster
Firef1y72 · 04/06/2020 20:40

@Idroppedthescrewinthetuna

I think I have a mild case of some sort of claustrophobia. I actually struggled to wear anything but vest tops for many years due to feeling restricted, i used to keep my coat undone all winter. 🥶 I can now wear jumpers. Scarves are a big no no. Face masks to me will feel awful. I have to catch a bus to work. I have already decided that face masks are necessary to stop/slow the spread. I have opted to walking just over 2.5 hours to get to and from work. I will try to train myself wearing one without the panicky feeling, but I think that will take time.
That actually sounds a lot like sensory processing disorder. I live in shorts and t-shirt near enough all year. I have to cut all labels out of clothes. Can't wear certain materials (knitted clothes/gloves make me shudder) Only wear a coat if its freezing, etc. I am trying to get used to wearing a buff over my face/nose but....
OP posts:
ThisIsMeOrIsIt · 04/06/2020 20:40

@YouSetTheTone - good idea about hair up. I don't usually like them on show, and they're quite discreet but maybe it will help.

I guess I was thinking more if they become mandatory in shops and things too. I find most retail staff have zero Deaf awareness (probably the same for other disabilities) so they're not even thinking about issues a customer may have.

Idroppedthescrewinthetuna · 04/06/2020 20:41

And I still sound really abrupt. I really don't mean to be!

TerrapinStation · 04/06/2020 20:41

@Bizawit

The solution is not to make it mandatory. Not sure why everyone is finding this so hard to grasp?
The solution is to find a way to accommodate people who can't cover their faces, it would be nonsense to not make it mandatory for the sake of the relatively few who can't comply.

Other countries must have answers to this, we aren't a unique population.

Wecandothis99 · 04/06/2020 20:44

It's a tricky one; whilst I fully sympathise, you will be putting others at risk if you do not wear one so I'm not sure what the solution is really. It's going to be hrs getting kids to too. Not sure how I'll do it with my 2 year old! But if he won't then I won't take him on transport as it's unfair to others.

Original poster
Firef1y72 · 04/06/2020 20:46

@Wecandothis99

It's a tricky one; whilst I fully sympathise, you will be putting others at risk if you do not wear one so I'm not sure what the solution is really. It's going to be hrs getting kids to too. Not sure how I'll do it with my 2 year old! But if he won't then I won't take him on transport as it's unfair to others.
The 2 year will be exempt. Under 3s are exempt from wearing a mask.
OP posts:
Splodgetastic · 04/06/2020 20:46

I have been practising wearing a mask around the house because I have asthma and find it difficult to wear and I sort of saw this coming (Asthma UK advise that you shouldn’t wear one if you find it difficult) but I find it really hot and uncomfortable. It’s not immediately clear to me how you avail yourself of the exemption for breathing conditions or other disabilities. Do you need a doctor’ note? If so, good luck with getting an appointment... I think we’re just going to have to suck this up.

PerkingFaintly · 04/06/2020 20:47

I appreciate you might be able to tolerate one of these either, but would a full face perspex shield like HCPs have, work for you?

This sort of thing: www.premierhygiene.co.uk/product/protective-face-shield-visor/

PerkingFaintly · 04/06/2020 20:48

you might not be able to tolerate

Idroppedthescrewinthetuna · 04/06/2020 20:48

That actually sounds a lot like sensory processing disorder.
I live in shorts and t-shirt near enough all year. I have to cut all labels out of clothes. Can't wear certain materials (knitted clothes/gloves make me shudder) Only wear a coat if its freezing, etc.
I am trying to get used to wearing a buff over my face/nose but....

I don't have any other sensory issues. Some of my 'quirks' as I call them don't make sense with each other. So I don't think there is a sensory thing there. So I am funny about anything covering my neck up. It used to be from chest. Which was awful as I have a larger breast so many people thought it was so I could show off my clevage! Hmm
But in bed I have to have a 13.5 tog quilt even in the summer! My partner hates it as my house is a warm house so summer it is like a sauna. He gets so hot cos of the big duvet. The slightest gap I can feel a draught and feel cold. My quilt is always pulled right up to my chin and cocooned around me. Fluffy socks have to be worn too.

Now new regulations are in, I am going to go outside in garden daily and put a face covering on for 1 minute and increase it by 30 seconds every other day. The walking to work will take 5 hours daily, that is 5 hours out of my childrens lives that I won't be there. It will not be sustainable!

DamnYankee · 04/06/2020 20:52

I hate them too!
OP, you just may have to put up with some "looks" - and maybe words - from others. Then you can explain.
I'm just going to have to minimize the time I spend in one.
They are not mandatory here, either, but businesses in my US state have the right to refuse you service if you don't wear one. Never seen this happen, though.

Oxyiz · 04/06/2020 20:55

On the flip side I'm autistic and really like them, it's like hiding from the world.

Have you thought about trying a big soft hairband which could be very silky around your face maybe? The right sort of fabric might feel quite nice?

Kittywampus · 04/06/2020 20:57

I think that asthmatics are advised not to wear them? That's quite a large percentage of the population so I don't think you will stand out too much if you aren't wearing one.

Oxyiz · 04/06/2020 20:57

I sometimes use this one as an eye mask at night because the fabric is so soft: www.amazon.co.uk/dp/B01MYU8PGB/

Neome · 04/06/2020 20:58

Hi OP, there's lots of neurodiversity in our family so what you say makes sense and I feel for you.

This isn't a solution but I'm just wondering if you would feel comfortable holding something a few inches in front of your face. I'm remembering the look of acting masks on a stick.

There might be some kind of shield that could be found or created which you could hold at a comfortable distance which would still give you and others some element of protection.

BigChocFrenzy · 04/06/2020 20:58

I've a hearing disability (visual one too) and I live in Germany where masks have been compulsory for several weeks

On the rare occasion someone speaks to me and I can't figure out what they want, I just say I've a hearing disability
To date we've always managed to communicate, even if it means in mime.
There are usually only a limited number of things they might be saying to me, when I have a mask on, so process of elimination which one it is
(I cba with idle chatter even before masks)

Tangledyarn · 04/06/2020 21:01

I think it will be an issue for a lot of people, hopefully the government will release some guidance. I'm all for masks theoretically but am asthmatic and post covid still v short of breath so it feels really awful wearing one at the moment.