Tilly is matching!
In today’s video we’re going to be talking about masks-
- WEAR YOUR MASK FOR GOODNESS SAKE!
But not just how they’ve strangely become a political symbol-
- what...?
We’re going to be looking at the specific difficulty masks create for deaf people and
how we can work around it.
This month is Disability Pride Month and I only found that out one week in, with the
help of Twitter, despite actually BEING disabled.
- darn, the hive mind didn’t work this time(!)
I thought, gosh, I’ve just done a month of videos about LGBTQ+ issues for… ‘Rainbow
Pride Month’... as I will now be calling it, for differentiation… Why don’t I do
a month of videos about disabilities?
So I’m jumping right in with a video about deafness. How not controversial (!)
You may have noted that in bios and interviews I describe myself as a ‘deaf and disabled’
creator rather than just lumping ‘deafness’ in with being genetically disabled, even though
it is a symptom of such. This is because many Deaf people see the insinuation that they
are ‘disabled’ as insulting.
Look at it this way: someone who uses a wheelchair due to paraplegia still needs to do so inside
their house. When spending time with friends, even if those friends are also in wheelchairs,
they will need certain accommodations like ramps and accessible toilets.
However, a Deaf person moving around their own house or just doing their own thing, doesn’t
feel like they have a ‘problem’ until they come into contact with a person who expects
them to hear. If they’re a sign language user chatting with other people who sign,
they won’t feel like it’s a lesser form of communication, it’s just a different language.
There is an argument in many deaf circles that they are not ‘disabled’ by design
but disabled by the world around them. It’s a controversial point though and not all deaf
people feel the same.
- nuance.
Of the many symptoms I have and the things ‘wrong’ with me, I probably care the least
about my deafness, even though it’s the one that others often think would bother me
the most.
Or… I DIDN’T care about it,
UNTIL THERE WAS A PANDEMIC.
For the first two months of lockdown I didn’t leave my house other than to walk the dogs
in the park and drop bags of washing off at my sister-in-law’s front door (because,
yes, we still live in a building site that doesn’t have a working washing machine and
we’re already using the bath as the sink so other than buying a pair of new
knickers every day, we have limited options)
The only person I spoke to face-to-face was my wife, who also went nowhere because the
government told dentists to stop working but then didn’t put anything in place to help
people in severe dental pain, so, sorry to those people.
We didn’t wear masks whilst walking around the park because it’s a big park and everyone
obeyed social distancing rules.
Sounds easy, right?
And THEN I got taken to hospital.
Now that isn’t super odd for me- as previously mentioned I have a malfunctioning body- but
what WAS new was dealing with medical staff who were constantly wearing masks.
In normal circumstances doctors wear masks when doing surgery in order to avoid contaminating
the open wound or picking something up. Equally, dentists wear masks for their protection and
your own.
However, in these strange times all personnel, including porters and admin staff were wearing
their masks and I was suddenly confronted with the fact that I couldn’t lipread like
I normally do and WOW did I not understand what anyone was saying.
In fact, that problem slapped me around the face like a cold fish the moment we arrived
at the Emergency Room doors. Because only the person in need of medical attention is
allowed in, not a friend, family member or carer. But of course them telling me that
didn’t mean much since I couldn’t hear them and they couldn’t take their masks
off. So my wife had to explain that she would be acting as both my interpreter and carer
and there was no other option.
So she was coming in.
Which was okay during the day time: she just followed me around the hospital and used a
mixture of sign language and pulling her mask down to explain what was going on- she can
breathe in my direction, after all, we’ve already shared bugs. It got very scary when
she went home to sleep though… most doctors and nurses were happy to pull their masks
down and let me lipread while they stood at the end of my bed and kept their distance
but I was woken up in the middle of the night by a figure in a mask and visor looming over
me with a swab to do a COVID test, who did NOT explain what they were doing in a way
that I could understand but DID stick a massive cotton swab up my nose and in my mouth so…
That’s a thing.
- At least I knew for sure that I’m negative for COVID!
The hospital experience was pretty shaky for me- for many reasons, obviously, but also
because I felt so insecure because of my inability to communicate.
Imagine you’re in a foreign hospital, in a place where you don’t speak the language
but they understand you. Now imagine they’re doing tests and trying to explain to you what
might be the cause of your problems. Oh, and you’re in massive amounts of pain.
So you can't really pay attention either.
It's stressful!
Moving forward, as the world starts to open up again, some countries are mandating that
masks are worn in public spaces or on public transport. Sadly, my country has decided they
can’t be arsed to make a law about wearing masks but maybe your country is more sensible.
Then again, 40% of my audience is American so… probably not.
Sorry guys.
Deaf people, people who are hard of hearing and those with other auditory or processing
problems that mean they have to rely on lipreading are still going to be using those public spaces.
Thus I am here to bring you some top tips on how to communicate whilst wearing a mask
and what you really shouldn’t be doing…
Okay, so obviously, let’s go over the normal lip reading helper tool kit:
Don’t turn your back Don’t eat whilst speaking
Don’t mumble Don’t go too slow or too fast
And obviously… Don’t cover your mouth
- unless you are doing so for religious or cultural reasons, because I’m not here to
tell you how to make one marginalised group’s life easier by discriminating against another.
You could all learn sign language though.
I know I just told you about being in hospital and the doctors taking their masks off for
me and that being really great but don’t do that in everyday life. We were in a controlled,
sterile environment and had all been tested for COVID-19.
We were all negative.
Other options include using the notes app on your phone or writing out a text message
and holding it up to each other.
This is a little trick that deaf people use often and a way that I sometimes make my friends
interpret panel talks or speeches that aren’t interpreted. You’ll need a fast typer for
that one though!
Thank you Clara!
Obviously. OBVIOUSLY. Don’t be a wally and hand your phone to someone when neither of
you are wearing gloves. That’s just asking for trouble!
If you’re low-tech (or in school) use a pen and paper to write messages down instead.
Try not to write long, complex works of literary art when you’re just asking to borrow a
ruler because that’s just really, really boring for the other person to sit through.
And the obvious: learn sign language.
Whether you work in a shop, a cafe, a town hall or a hospital, if you have a job that
requires you to interact with members of the public be prepared for some of those people
to be deaf. Learn the 40 or 50 words that are most important to your profession, including
the obvious like ‘toilet’ and ‘help’. Facial expressions do play a large role in
sign language but even when they aren’t visible the signs themselves are still helpful.
Don’t assume that all deaf or hard of hearing people can sign however so be prepared to
communicate in written form as well.
If you don’t know any sign language, common-sense gestures are still useful. If someone asks
you where in the shop a pan is, and you can’t walk them there right now, a simple ‘straight’,
‘left’, ‘straight’ and ‘left’ again is still wroks.
I have no idea if that was your left?
As is:
'third'
‘door’ on the ‘right’.
Take your time with communicating and allow the other person to ask you repeated questions
without getting flustered or rushing. Especially bear this in mind when dealing with older
people who struggle with their hearing- it’s harder for them to adapt to their hearing
loss so it’s going to be even harder for them now we’re all wearing masks. Repeat
yourself if needs be, write clearly in a font that isn’t too small and try everything.
Now, let’s talk about the thing I am most often tagged in posts about on Twitter:
clear masks!
Firstly, uh… they’re not a COVID- related invention, they’ve been around for a while
and this is NOT the first time deaf people have needed medical care or entered the medical
profession.
They are a thing.
- They even had a cameo in my favourite show, Grey’s Anatomy! They have a new diagnostician
and recurring character, Dr Lauren Riley, who is deaf AND played by a deaf actress:
Shoshannah Stern. It’s very exciting.
She and the team wear clear masks, it was filmed pre-COVID and yes, these masks have
been available for a while. Their composition is different, some work better than others-
these particular ones are made by Costume designer Michelle May (I’ll leave her Instagram
in the description)- but they all have the same uses and the same flaw.
If someone is speaking English, 35% of language is visible on the lips. Just 35%. The rest
is based on context, body language, how well you know a person and thus what they are likely
to want to talk to you about right now…
But that 35% estimation is only based on a fully visible face, not a tiny window.
If I understand your first word, that doesn’t necessarily mean I understand your second.
And if I don’t understand your first word, well then in my mind that second word could
be anything in the English language. It takes a lot of brain-power to constantly guess what
the next word could be. I cycle through them in my mind like slots on a gambling machine.
Someone wearing a mask with a window IS helpful but not if they change their speech pattern
because the mask feels funny or the window fogs up.
By the way, in order to cut down on your mask window fogging up: rub a little dish soap
on the inside of the clear window and allow it to dry.
When you are deaf your brain runs in delay
which, for me, means I tend to jump in and cut people off when
I’ve worked out what the previous sentence was about. And if I think I get where your
sentence is already going, I’ll stop you and ask “you mean x?” rather than sit
through a minute of something I might not understand and by then you’ll have moved
on to talking about something else anyway.
If you’re holding a banana and start a sentence with “My favourite fruit has changed...”
I’m going to jump in with “I love bananas too!”
It might not be right but it makes me feel involved.
I do it a lot when I’m tired because I don’t have the energy to expend on trying to work
out what you’re saying. It’s much easier instead to ask questions or give statements
that you can agree or disagree to.
The hardest part is working out what’s going on when someone switches to a new topic- I
already have all of my replies for the last topic ready, so you’re going to get them,
even though you think we’d moved on! I’ll be trying to lipread you but with the earlier
topic as context, which means I’m really, really going to mess up!
The best way to help is to make it very clear when you’re changing a topic or asking me
an unrelated question.
“Actually my favourite type of frog is the blue poison dart frog.
Can I get you another drink?”
In my mind becomes:
“Actually, my favourite frog is the blue horizon part frog and I think it has a stink.”
Uh…
Next time try:
“Actually my favourite type of frog is the blue poison dart frog.” [Pause] [motion]
“You want a drink?”
One of the things my wife says painfully often is: “I’m not talking about that anymore.”
or more often “We’re not talking about that anymore.” And always with the same
facial expression.
I’m sorry…
Unless you TELL me when you’re talking about something new, I’m not going to know! So
tell me. Or else I will just talk a lot about a subject I have knowledge on in order to
narrow down the list of possible words you could say.
Back to masks: A lip-window has advantages over an occlusive mask because with a full
mask I don’t even know if you’re talking.
Seriously, try watching a surgery scene on Grey’s Anatomy with the mute button on.
Can you actually tell who is talking and when? Is that just a silent reaction shot or is
she giving a motivational speech that in some way relates the patient’s case to the love
lives of those around her or the latest massive, traumatic disaster that seems to happen annually?
- [sigh] Ah, relatable…(!)
Whilst a mask with a plastic window, provided the window is large enough, is certainly helpful
(and I make my wife wear this one when we’re in public even though she looks slightly hilarious),
there are drawbacks: it’s sweaty to wear, it reduces the surface area that serves as
filtration and there is the worry that it diverts airflow through unfiltered pathways
around the edges of the mask. Also, what if it’s so reflective it just shines?
And speaking of my wife wearing this mask… it’s helpful when SHE does for me but I
don’t know how helpful I would find a stranger wearing one. I have a large back catalogue
of my wife’s facial expressions and speech patterns stored in my head-
- it’s what helps me sub in a word when she stutters over it or switches it for something
similar. When I lipread ‘much room’, I know she’s accidentally saying ‘mushrooms’
but really means ‘tomatoes’.
Marry your best friend, kids. You’re probably the only people who will understand each other.
BUT when I meet a new person for the first time, I need to learn their face and the way
they speak, the odd lilts to their language and how their accent changes the words they
say and how that, for me, changes their meaning. That’s near impossible when they’re wearing
a mask and not much easier when all I have to go on is that tiny clear slit.
I need to see your whole cheeks to understand you, the way your mouth pulls to the sides.
I need to see your chin, if it goes backwards or forwards at the end of a word. I need to
be clearly able to see your eyes and mouth together to know if you’re joking
or being serious.
So what is the answer?
Well, wearing your mask during a pandemic is the answer. Being able to sign, ‘can
I help you?’ or quickly write it down. Knowing the words for hospital, doctor and ambulance.
It would be great if someone could invent a fully clear mask that didn’t suffocate
the wearer but still kept them safe… but we might be a little way off that! I’ve
seen some doctors and dentists wearing a hood type mask that blows air in through
the back and looks a bit like a bee keeper’s hood mixed with a space helmet and gives you
a clear panel to see the wearer’s entire face.
But it's very expensive and I think you have to
carry it around. It might be a bit much.
Lipreading has the magical ability of annoyingly making other people forget you’re deaf and
that’s often very unhelpful. So please just be prepared to help your fellow ‘hearing
is hard’ humans out.
Thank you so much for watching this video!
If you would like to know more about me, deafness or just enjoy learning about different perspectives
in an amusing way then subscribe to my channel.
And I’ll see you in my next video
[kiss]