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This is a full transcript of Maskcast: "If I'm struggling, be kind" as first broadcast on 24 July 2020 and presented by Emma Tracey.

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EMMA - Hello, this is Cabin Fever from 成人论坛 Ouch, and today's episode is something we're calling Mask Cast, because I'm here with two of my colleagues to talk about why disabled people might have a bit more trouble wearing masks, less trouble, trouble with other people wearing masks. And just a bit of a conversation about the rules around the mandatory face coverings in shops and supermarkets which happens in England on 24th July.

So, I'm Emma Tracey. And for the purposes of the conversation I'm blind, I can't see anything, and I've noticed some things that have been happening with me around face coverings recently. I'm joined by Drew Miller Hyndman.

DREW -听听 I am autistic, for the purposes of this podcast, and I also have ADHD and a little bit of hearing loss as well.

EMMA - And we also have Maddie Molloy.

MADDIE -听听听听听听听听听听听听听听听 Hi, I am profoundly deaf. I have absolutely no hearing whatsoever. I rely heavily on lip reading, and I have a cochlear implant.

EMMA - So, as I say, the government is making it mandatory to wear face coverings in shops and supermarkets from 24th July. But Drew, there are some exemptions, aren't there if people don't have to wear a face covering in certain circumstances?

DREW -听听 Yeah, if you're not able to put on, wear or remove a face covering yourself because of a physical or mental illness, an impairment or a disability; if putting on wearing or removing a face covering causes you severe distress; if you are travelling with or providing assistance to someone who relies on lip reading to communicate. There are some scenarios where you are allowed to take your covering off when asked and those two are: if asked to do so by a member of the shop staff for the purposes of verifying your age, if you're buying alcohol for example; or if you're speaking to people who rely on lip reading, facial expressions and clear sound.

EMMA - Maddie, have you had to ask people to remove a face covering so far?

MADDIE -听听听听听听听听听听听听听听听 Yeah, I have actually had to ask a lot of people. This weekend I actually took the train and had to keep asking and asking and asking somebody who worked at the train station to remove their mask. They just would not do it. I couldn't understand. And then I ended up getting on the train, not 100% sure if that's the train I should be on.

EMMA - That must have been difficult. How did you feel when that was going on?

MADDIE -听听听听听听听听听听听听听听听 That made me so anxious. More because I was an hour away from home and I didn't know if I was only getting further away from home or if I was on my way back. And it was just really annoying because the guy also had an accent, so it wasn't like I could have made out one or two words; it was like flat out, it just sounded like mumbling to me. And it does make you feel nervous and anxious and a little bit hurt because it's like I don't quite matter as much. There wasn't anyone around us so he would have been quite safe, and I had my mask on.

EMMA - Yeah. Deaf people are probably the ones who have rightly been making the most noise about face coverings and when to remove them and exemptions and different types of face coverings. And a big thing that's been talked about is clear masks. Have you come across those? And if so how have you found them?

MADDIE -听听听听听听听听听听听听听听听 Yeah, I've seen a lot about the clear masks on the internet, but I haven't actually come across one in real life. I've not seen anyone wear one. I really hope that it becomes a big thing. I know that the National Deaf Children's Society are writing a blog about making your own clear panel mask, and urging the public to support their Keep it Clear campaign, which requires people to wear clear face masks in public settings. But unfortunately no, I've not really seen anyone; or I've mentioned it to people and they're not willing to make one themselves really.

EMMA - And what about you making one yourself? Is that something you could do, do you think?

MADDIE -听听听听听听听听听听听听听听听 I've been debating whether to do it or not, because at the moment my mum or whoever is with is allowed to take off their mask to communicate with me. So, it would really be a case of everybody else wearing them, everybody else who wouldn't want to take off their mask, who wouldn't want to remove it, to talk to somebody. It's more them who need to be wearing it.

EMMA - Sure. We've talked about clear panels in terms of lip reading; but is that the only reason why need a clear panel face mask to communicate with someone?

DREW -听听 I've been wearing a mask since lockdown started, and I think as other people have started to wear them the thing that's been hardest for me is I do a lot of actively reading people's faces to try and gauge how they're speaking to me and things like tone of voice, which is something I really struggle with. And if I can't see especially around someone's mouth it's really, really hard for me to tell what emotion they're feeling and trying to express. I can't read people's eyes very well at all. I think a clear panel would really help with a lot of that.

But a lot of the reading that I do is from the eyes down; so it's things like what their cheeks are doing, because you do express yourself with your whole face. And I wondered, Maddie, if you have come across, because I've seen some comments from people saying that the clear panel is okay but it's not going to resolve the whole issue because lip reading is about a bit more than that.

MADDIE -听听听听听听听听听听听听听听听 Lip reading isn't too much about facial expressions, but BSL is a lot to do with facial expressions. For those of you that don't know, BSL is British Sign Language. And you know how you sometimes have a word that has double meaning, for example sweet: you can either have sweets or you can be sweet. And they're the same in British Sign Language, you put your hand up to your cheek and you sort of do different facial expressions to indicate which one you mean. And it is going to make it a bit difficult that the whole mask isn't completely clear because you won't be able to see all of their facial expressions, but it will help more than just a normal mask.

DREW -听听 I think it would be good to try and find a material that doesn't fog up. I'm thinking of getting a clear panel put into one of the masks that I've made from home. But that's my main worry, because it already gets quite humid in there because it's not a particularly breathable mask as it is, so trying to find a material that is still protective but can actually be seen through I think would be the key. I think someone would make a lot of money if they can figure out which material would be good for that.

EMMA - And Drew, you're autistic, as you said at the start. Have you any issues around wearing a mask yourself? Is that a problem for you at all or is it just like the same as lots of other people, it's a bit inconvenient or whatever?

DREW -听听 Yeah, for me it's not a huge issue. I find it quite uncomfortable around the backs of my ears because I'm just quite sensitive around that area, that's pretty common, but it varies a lot with autism. So, groups like the National Autistic Society don't really take an angle on things like masks because there is just a huge variation on the different experiences you can have as an autistic person. Some people will be fine, and some people will find them so overwhelming to the point of a meltdown.

For me I benefit somewhat from having a mask that I was wearing for cycling, for pollution, that comes with two breathable valves so it doesn't get too much that feeling of suffocating that some people describe where it gets quite humid inside your mask. And it also attaches round the back so it's not over my ears. I know that some people have really struggled with that sort of humidity, autistic people on Twitter and things like that.

EMMA - Why have you been wearing a mask for cycling anyway, a pollution mask, why specifically? Because it's not something a lot of people do.

DREW -听听 It's partly because of my mum when I moved up to London and was going to be cycling to work through central and south London, she was quite keen for me to get one. And I was quite keen to get one because I cycle about an hour into work usually, and if you're behind buses and cars it is quite unpleasant anyway. And then if you think about the stuff that you can't even smell when you're breathing in, yeah, it's mainly for health reasons.

EMMA - Yeah. I guess I was asking to see if there was an autistic reason or an ADHD reason or anything behind it. But I guess it's a sensible thing to do obviously, but not many of us choose to do it.

DREW -听听 Yeah. I can feel more comfortable behind a mask because I feel almost like I'm safe behind it; I don't have to worry about how my face looks and the expressions I might be giving off. Because my face, I'm not in a huge amount of control about it when I'm not thinking about it actively, so I can have that thing of having a resting face that looks a bit annoyed or like I'm looking at someone funny. But other than that no, there's not a particular autistic reason.

Maddie, is there anything specifically about you wearing a mask that is particularly difficult?

MADDIE -听听听听听听听听听听听听听听听 There are two different types of hearing aids you can have: you can have what most people know about and think most people wear it to the hearing aid, or you can have a cochlear implant. Now, I have a cochlear implant and that requires head surgery to get, which means I have a couple of scars from the surgery, as always; one which is directly behind my ear. Now, for me fortunately I don't experience irritation of the scars every single day, but it does happen every so often. And I know a lot of people who experience it every single day, and it just gets red, inflamed and itchy and there's not much they can do about it. And wearing a mask can really, really start the irritation, because when you're moving and you're speaking and you're walking about and you're running about and you're living your daily life the mask doesn't stay still. It goes up and down your ears, it rubs your ears and it can get really uncomfortable.

So, I've found that there are a lot of different ways to wear a mask. And I know some surgeons are using it because wearing your mask behind your ear for that long is just completely irritating. So, you can tie your hair up in the pony, like I've got my hair up in today, and you can put the mask loops over your ponytail, or you can do little buns and put them over the buns. Or if you don't like putting it over your hair you can go on places like Etsy or Amazon or anything like that and you can buy little loops that you can put round the back of your head and you can loop the mask in so it doesn't have to touch behind your ears. Or if you're not comfortable with that you can get a headband that has buttons in it, and the buttons will be at the back of your head and you can put the loops over that. There are so many different ways you can wear a mask. You don't need to have it behind your ears if it irritates you. I know it's such a sensitive place that they're not used to things going behind there, so it can irritate and annoy absolutely anyone. You don't even have to have a disability for it to be annoying.

EMMA - That's brilliant. They're such handy tools for everybody I think. My issues are minimally around other people wearing masks; not being able to see; I think the voice is slightly muffled so it's a little bit more difficult to identify people when they come up to you. But really it's mostly about me wearing a mask. And it's not a make or break, because I'm not doing anything particularly independently at the moment because of social distancing, I find that really difficult anyway; but I don't really think I realised this, and we've talked about this many times before on the podcast, echo location. So, where sonar, kind of bat sense, you kind of hear the walls, you can feel that coming back to you onto your body. And I realise that I get a lot of information all over my face because when I've got my mask on I feel like my smell is different and my breathing is different. I even think I get details of my environment from breathing, because breathing is sound and that sends back waves to me. And so even with my breathing sound changed that changes my perception of what's around me.

听听听听听听听听听听听听听听听听听 But I also spoke to other blind people. One of them said they got lost in a tube station that they knew extremely well just because they had a mask on and the information they were receiving from their environment was so different. So, you just never know what issues people are going to have.

DREW -听听 Emma, you said about masks and them affecting your echo location; what about things like hats and sunglasses, do they have any impact at all?

EMMA - Yeah. I mean, the stereotype is that all blind people wear sunglasses, isn't it? But actually for me I find sunglasses distressing actually because I can see light and dark and that is all I can see; when I wear sunglasses the light coming through the glasses changes and it ruins how I get around. So, I use the darkness against the light to see a pole or a wall, and then when that's dimmed, when the light is dimmed, then I can't see the darkness so much against it, so that's very stressful.

听听听听听听听听听听听听听听听听听 And then a hat, any sort of brimmed hat, I obviously get information right through my forehead and the top of my head, because when I wear a hat A, the light and dark changes because I can't see any of the darkness of walls and things anywhere above my eyes. So, anything above eye level, so I walk into things at forehead level. But also the echo location stops where the peak is, and the peak stops it from coming in, I think, to the top of my face. I think people are going to think I'm a bit off the wall saying all this, but it definitely does affect me. I can't wear a brimmed hat or a peaked hat. It makes me anxious because I can't "see" in the same way as I would ordinarily.

DREW -听听 That's really interesting. It's one of those things that no one would think about if they hadn't experienced it themselves.

EMMA - Well, I'm kind of worried that all the blind people are going to be like, what are you talking about, Emma, I do not relate to this.

DREW -听听 Don't worry Emma, we can relate; we don't like things covering our ears.

EMMA - The exemptions are interesting because I don't know whether I听 would really be considered in that category, and know if I want to be because I think I'd rather be safe or keep other people safe than get the ultimate amount of information back into my face. I think if it causes you severe distress then you have no other choice than to travel independently; as a blind person you might consider activating that exemption. But actually, because of the social distancing issues, I would be very slow not to wear one because I could come very close to somebody and not realise it. So, I don't really know how I feel about it.

听听听听听听听听听听听听听听听听听 It's so interesting. It's such a new world, isn't it?

MADDIE -听听听听听听听听听听听听听听听 Yeah, it really, really is. Say, we saw a blind or partially blind person in a shop is there anything we can do to help or should we just let you be independent, as you have obviously lived like this most or all your鈥�depending on the person, how long they've been dealing with this? Is there anything you can do to help be more accessible?听

EMMA - Pre-COVID I would take help and I would ask someone I didn't know to guide me, really straightforwardly, and I'd be more surprised if they didn't do it than if they did. Whereas now I wouldn't have that expectation anymore.

So, I think keep the social distancing. Make it very clear that you're talking to the blind person and say your name. And I think that would be a really good start. And then the blind person can decide what help they are willing to ask for, and then the sighted person can decide what help within that request they're willing to give. And the blind person knows their name so that if they need to talk to the person and they are a socially distanced bit away from you, walking in front of you to get you to a place, you can say their name and they can answer you. Does that make sense?

MADDIE -听听听听听听听听听听听听听听听 Yeah, definitely.

EMMA - You asked me what the best way to help me in a shop would be, or in a situation where people need to wear face coverings, and I would like to ask you the same question. Maddie, if someone saw that you needed some help in a shop or you were asking for assistance what's the best thing for them to do?

MADDIE -听听听听听听听听听听听听听听听 Usually deafness is a hidden disability. You usually can't tell when somebody is deaf. And you may have met deaf people without even realising. So, when I ask for help or ask somebody to remove their mask I often see people roll their eyes. Please don't roll your eyes; I'm not trying to be annoying by asking you questions, I'm not trying to impact your safety for just my convenience. I am not going to ask unless I absolutely need it.

You can say yes or no. obviously you removing your mask is your decision. But please say yes or no to the question. Please answer me when I ask that. And answer me nicely; you don't have to be rude about it. If you're not fine with that, if you're not comfortable with that I'll move on to the next person.

The best thing you can be is patient with me. It does take me a little time to understand sometimes. It's like I have a thing I like to call it, I don't know what everybody else calls it, but I call it delayed hearing; it's like when I hear something, I've heard it, but I don't understand it yet. It takes me a second to piece together the sentence that's been formed. So, I've heard those words and I've got to put them together. And if you think we're not understanding you and you're not comfortable with taking your mask off write it on your phone and then I'll know whether you're comfortable or not.

EMMA - Great. And what about you, Drew, what could people do that they're not doing or that you've seen people not doing for you to make things easier in that kind of face covering mandatory setting?

DREW -听听 I think patience is the key thing. I can't go to really anywhere new on my own because a mixture of either na茂ve confidence and I end up doing something that puts me at risk because I'm like, oh I'm fine, or just anxiety levels, I find it too overwhelming.

The best thing people can do is just be a bit patient if, for example, I am getting overwhelmed or stressed then just giving me the space to socially distance as much as they can when in shops, because it makes me really anxious when people are coming that close. And also to, where obviously they're not part of the exemptions, to wear a mask. Autistic people can be very rules orientated; it's that logic: the rules are there for a reason so they must be followed - and often that is to a fault. But it can be quite distressing when you're following a rule, especially when that rule isn't particularly comfortable to you, and everyone else is just completely ignoring it, it can be quite upsetting. And obviously with the addition of potentially catching a virus, and with me my partner is shielding, spreading it to someone you care about. It's an addition stress I don't need when I'm just going to the shops.

EMMA - Yeah absolutely. I think that's it, isn't it? What an interesting conversation. I've learned so much. And we're going to have to wear the masks; we just need to figure out how to be kind and sympathetic and empathetic. And good luck when masks become mandatory in England on July 24th.

听听听听听听听听听听听听听听听听听 [Music]

听听听听听听听听听听听听听听听听听 You've been listening to Cabin Fever on 成人论坛 Ouch. If you want to get in touch with us please do so at ouch@bbc.co.uk on the email. You can find us on Twitter and Facebook @bbcouch. And you can subscribe to the podcast on the 成人论坛 Sounds app. Thanks for listening and we'll talk to you again really soon. Bye.

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