Tuesday 29 September 2020

Deaf Girly's return to work

When I went on maternity leave last August, one of the things I never considered was that I'd be returning to work in the middle of a global pandemic. But in May this year, that's just what I did.

Before I went on maternity leave, I had been working both in the office and from home and it was great. I'd have video calls with my colleagues around the world at odd times in my pyjamas and then head into the office to have real-life meetings and conversations. I liked this balance.

My deafness is a tough one when it comes to speech. I can hear the human voice quite well, but the clarity of what is being said is completely missing. It's like I'm living in a world where everyone speaks a different language to me. This means that when I chat to someone, I am completely reliant on lipreading and context guesswork to understand what they are saying.

This. Is. An. Exhausting. Existence.

When I was at school, I was statemented in order to get additional support. Someone from the council came and observed me in my 70-minute lessons and established that I have a hearing ability of just 40 minutes. After 40 minutes of listening, lipreading and guessing, I completely zone out. How did she discover this? Because after 40 minutes, I was fast asleep at my desk.

One time, I actually woke myself up sleep talking in my history A Level lesson.

Anyway, returning to a completely remote working set up challenged me in ways I never anticipated. Before I had perhaps a 60/40 split of calls versus real-world conversations. Now all my conversations take place over a video call. And do you know what? I don't find them easy.

And over the last few months, I've found myself questioning the value of my contributions to my team. The value of what I offer. I've felt like an outsider colleague. And I'd been struggling to put my finger on quite what was going wrong.

But yesterday in a call, I finally realised what it was.

One of my amazing team members is in Portugal. I work very closely with her and yesterday we were working on a really important document and editing it live over a Teams call.

I was doing the editing and was lipreading her over the screen - using the subtitles for support - to ensure that both our thoughts were included in the edit. However, what I realised was that even though I was 'hearing' what she was saying, I was so focused on piecing it all together that my brain forgot to retain it.

I would literally 'hear' whole sentences and two seconds later think, 'What did she say?'

It was madness. But the reality is, this is probably most of my calls right now. I am focusing so hard on hearing that I am completely unable to retain it at the same time. And I am so nervous about saying the wrong thing, that more often than not, I say completely the wrong thing. 

It's cringeworthily, facepalmingly horrific. 

The kind of horrific that leaves me thinking, 'I just need to keep my mute button on and stay in the background'. But those of you who know me will know that mute buttons are really not my usual style.

And this makes me sad.

When I realised what was happening in my call with my colleague and explained it, she was brilliant. She suggested summarising what she was saying in the chat so that I could refer back to it. And it worked. I heard, I understood and then I read the summary back to try and force my brain to retain the information. But it meant that we spent the best part of six hours on a call yesterday, bashing a piece of writing into shape. And I needed to lie in a dark room afterwards.

And this also makes me sad. Because I want to be the very best at my job. And I feel mediocre right now.

One of the things that the COVID-19 pandemic has really highlighted for me, is how I am having to rethink all my deaf person life hacks. Before, with my work, I would make sure I had a balance of office and remote working so that I felt included and part of the team. Before the pandemic I had really strong career ambitions, and now I find myself wondering if I will ever realise those.

Before with bars, shops and restaurants, I had ways of getting by that have all vanished behind a sea of facemasks - but that's a whole other story.

I know that I will hack a successful way of working again, but for now, I am stuck in that weird halfway period of sadness and a little bit of tantrumming while I work out what the heck I am going to do.

And do you know what? It was feeling like this twelve years ago in 2008 that inspired me to start this blog in the first place. And I worked it out then and I will work it out now.

Wednesday 6 May 2020

Deaf Girly and the (Covid-19) face masks

There's been a lot in the news and on social media recently addressing the issues around face masks and deaf people being able to lipread. Poorna Bell wrote this piece for the iPaper about how deaf people are being affected by the Coronavirus crisis.

I'll admit, this subject scares me so much, I've not really wanted to talk about it. Or think about it actually.

One of my biggest fears is ending up in hospital and being surrounded by masked people and having no clue what is going on. Especially if I'm in hospital with COVID-19 because I know I also won't have any of the family support I rely on to help me hear in tricky situations.

On the occasions that this thought has infiltrated my brain, I've gone down a rabbit hole not only of future what if's, but also of looking back and thinking about how difficult it would have been giving birth eight months ago if my midwife had been wearing a mask. Those instructions are literally life saving - in my case they were anyway. Had I not been able to lipread my third and final midwife, who had the demeanour of a soccer mom after two litres of strong coffee, I'm not sure my birth experience would have been the same - but that's a whole other blog.

I've seen the amazing suggestions for clear sections on face masks to allow for lipreading and hope that these one day become commonplace. But it doesn't take away from the fact that right now, they are not.

This week, we had a Tesco deliver order. FJM works very long hours and this coupled with a small baby makes supermarket trips in this current climate very very difficult. So when I was lucky enough to get delivery slot, I was thrilled. As I questioned whether I was suitable to claim that slot, I thought 'Yes, I am.'

All the staff in shops right now have masks on. It makes it completely impossible to understand them. Double this with the stress of actually going to the shops, which takes my deafness up a notch to 'no idea what's going on at all' and I'm just not ready for that level of deafness confrontation for the sake of a loaf of bread and some milk.

Indeed, the only time I have ventured out shopping since lockdown began, my card wouldn't work and I couldn't understand the masked shopkeeper. I was close to tears, trying to explain my deafness to him and staring at my bags of vegetables and fruit for FFB's meals. Was this my new reality?

In the end, a lady behind me lifted her mask up and translated for me. The shopkeeper was telling me to take my shopping and come back and pay him another time. When I understood what he was telling me to do, I really did cry. And return a week later, my cash in an envelope so that he could leave it to one side for a time if he wanted to ensure it was safe to open.

So as I was saying, this week, our Tesco delivery came and the lovely driver came bounding up towards the front door chatting away with his trolley of goods - mainly fruit, veg and fish for FFB's meals. I'm trying to get FFB excited about new foods. But right now he's all about the half blueberries and working on his pincer grip.

But I didn't understand a word of what the delivery driver was saying because he had a face mask on. I was so sad because I didn't want to seem rude or disinterested. I wanted him to know how grateful I was for a much-coveted delivery slot. I explained that I was deaf and needed to lipread and he kept talking, which I find people often do - perhaps because they don't want to appear rude by literally shutting up straight away, or perhaps because he didn't quite believe me. I'm not sure...

But it was very winding, solar plexus winding as it hit me...

This is my new reality.

Now, I know in the grand scheme of things, this is really not something anyone else is going to be bothered about. But as I lay awake in bed last night, watching FFB self settle on the monitor, reassured that he didn't need me, I thought back to how hard I've worked to understand the world around me, how long it's taken me to feel comfortable in shops, restaurants, hairdressers, airports and other public places when I can't hear. The little hacks I've created to enable me to get by.

In a post COVID-19 world, that'll all be gone. I'm going to have to create new ways of coping with a masked world, where facial expressions and lip patterns are hidden. It scares me.

A masked world scares me. And right now, there's no way around this.

And it sucks.

However, as it's Deaf Awareness Week this week, I have one request. Do not forget D/deaf people if we live in this new masked world. Keep them in the forefront of your mind as you go through your daily life with your face and lips concealed. And if anyone has any other brilliant inventions to help make it easier for us to navigate the barriers we are facing in what is already a very scary situation, then I am all ears... kinda!

Happy Wednesday peeps!


Monday 4 May 2020

Deaf motherhood: baby talk

This month, FFB has learnt that his voice can do more than just yell, giggle, screech and cry. He's learning that he can also make more distinct sounds. And he started with b.

We had two whole days of him concentrating so hard he almost went crosseyed to get his little mouth to form the right shape and then off he went with a flurry of b-b-b-b-bs and bobobobobobos and bubububububs.

He was thrilled. Beaming from ear to ear. He showed off his new skills proudly to Grammoo and Grandude on his nightly FaceTime catch up while he had his tea which resulted in me wearing quite a lot of his dinner as he b-b-b-b-blew it all over me.

First thing in the morning, if popped my hearing aids in and stood outside his door, I could hear his little low husky voice proclaiming 'Bobobobobobobobobobobob' as he wrangled his Jellycat bunnies.

Of course I am thrilled, but if I'm honest, I am also terrified about FFB talking.

I have written about my inability to hear children before, about how I worry if affects my relationships with them, how they naturally gravitate to others instead of me because I'm not able to interact with them as easily.

Now, that's just about dealable with if it's not your child. If you don't take it personally or dwell on it too much. But they idea of my own child gravitating towards others to speak to them instead of me, is less easy to deal with.

I think that's one of the reasons why I am really working on the Baby Sign with FFB. What's more FJM is working on it, too. So FFB has the both of us signing at him, so hopefully he will start to sign back - he already does milk very well. He beams when we sign 'well done' to him. He laughs at the sign for Daddy as it usually gets done with a silly face as well.

One bonus perhaps from my deafness however, is the ability to read body language really well and with FFB it's no different. Tired, hungry, cross, frustrated, angry, sheepish, happy, playful... I am getting better and better at spotting his moods without needing to hear the nuances of the sounds he makes. I know that when he flaps his arms and legs in the highchair at teatime, he's just passed the overtired mark and we need to do Numberblocks and bathtime sharpish to ensure he heads off to a happy peaceful sleep.

I know that when he crawls across the floor and head butts my leg repeatedly, he wants me to sit him up, and then usually shortly after that comes the sign for milk. He also uses that sign for more water at teatime.

When I have bad days - and lockdown is throwing up a whole new world of isolation in what was already quite an isolated world anyway - I have to remind myself of these things. Of the fact that I'm doing OK at this motherhood thing.

As FJM says 'How do you know you're doing OK? Just look at the result!'

And when I look at my happy, bright-eyed little boy crawling at top speed up the corridor, giggling because he knows I'm going to chase him, I know I'm doing alright.

Happy Monday peeps


Wednesday 29 April 2020

Deaf motherhood: baby sleep

I was never going to be one of those people who rushed moving my baby into their own room. The anxiety I had about hearing FFB started long before he was born, and a bedside crib was the only place I wanted him at night for the first 7 months.

As well as being deaf, I am also extremely short sighted. So from the moment FFB was born, I've slept with my glasses on every single night so that my vision will help me hear him. When FJM is away, I also sleep with my hearing aids in.

When FFB was in our room, it worked well. Somehow, his cry was enough to wake me, and if it didn't, then FJM would wake me.

I also bought two different monitors for when he slept in the day - one was a video monitor so that I could watch him and see how he was doing and the other was a vibrating wrist band. This one works less well as it goes off with every sound including what I can only assume are police sirens and noises from outside the building. So I don't use that much.

However, at 7 months, FFB got really mobile and frustrated at the complete lack of space available to him in the little bedside cot and so we took the plunge and moved him into our study/spare room/nursery.

The first night, I'm not going to lie, I was petrified. I kept my hearing aids in and lay awake looking at the screen to check he was OK until eventually I fell asleep from sheer exhaustion. And then I discovered that even with my hearing aids in, his cry was not enough to wake me. In fact, I couldn't even hear him crying when I was awake. The only sign that he was crying was the red bar on the baby monitor - muted because FJM said it created a horrific echo - and his furious little face staring straight at the camera (he learnt fast that we were spying on him through that funny thing attached to his cot).

I was devastated. And slightly worried. Until now, I had been able to jump out of bed and comfort FFB quickly enough that it didn't wake FJM. Now both of us were getting a crap night's sleep and FJM had a tonne of work and long hours each day.

Fast forward two weeks and we are gradually working it out. FFB is learning to self settle a bit more without us there - he has two hard working Jellycat Bunnies who spend much of the night being wrangled left, right and centre around the cot and who need some serious washing machine TLC - but that's a whole other story, and he's learnt that while I might not come straight away, I will come if he needs me but that at 7 months this is a whole lot less than when he was really little.

For reassurance, I got some advice from Calm & Bright Sleep Support to make sure that even though I couldn't hear FFB, I was doing the best thing by him to help him get the best night's sleep. And, after chatting to one of them on Instagram, they're also looking at captioning their stories on Insta - where they offer lots of free advice - to make them more accessible to deaf mums like me.

When I wrote my last blog about deaf motherhood, I had some amazing people get in touch to remind me of the amazing adaptability of children and how FFB would also adapt to having a deaf mother and even at 7 months, he's doing that already.

He's using baby sign language - milk is his favourite - and he's fast learning the sign for 'gentle' as he keeps swiping my glasses from my face. We also sing songs with baby sign included in them as well. The wonderful Ettie Betty Baby Signs' online classes are invaluable and he loves them. And they're definitely keeping me sane during lockdown.

He also has a really low cry - something that FJM swears is because I respond to it whereas I don't hear high-pitched screaming. He comes right up to me when he wants something and he's incredibly expressive with his face. All this might have been exactly how he'd have turned out if he didn't have a deaf ma, and either way, it doesn't matter.

He's amazing. I love him. And I hope that he'll love me, even if I don't always hear him cry.

Happy Wednesday peeps


Wednesday 1 January 2020

Navigating the emotions of deaf motherhood

Today our little family - me, FJM and FFB were meant to be going to the cinema to see a subtitled screaming of Frozen 2.

As you can imagine FJM was not exactly excited about it but one of the many things I love about that man is his complete support when it comes to my deafness and, if something is subtitled, knowing how rare it is, he will always come with me.

I was really looking forward to today's little New Year's Day outing. FFB loves the cinema. The last time I took him, he was captivated by the moving pictures and lights.

We had popcorn, we had hot chocolate, I was excited. I don't take any visit to the cinema for granted.

So imagine my disappointment when the movie started but there were no subtitles.

That sinking feeling. The humiliation of having to walk out of the cinema.

Now, this blog is not about criticising the cinema in question. It was a technical mishap that they could do nothing about. They were lovely about it and I got a full refund, but as I sat in the back of the car beside a very sad FFB, (he was possibly crying because he was hungry) I couldn’t help but join him and let the fat salty tears run down my cheeks.

It wasn't really the disappointment of not being able to see Frozen 2. It was more the realisation and slap in the face of how restricting being deaf is at times. And how, in this case, it had affected not just me, but my family.

And as I sat there feeling more than a little sorry for myself, it began to dawn on me that as FFB gets older, there's going to be so much he will miss out on potentially because of me.

Things like children's theatre. Sure I will always take him and hope he enjoys it, but I won't be able to follow it or talk about it with him afterwards and give him all the benefits an experience like that should offer.

And what about the cinema? If FFB was of cinema going age right now, what would I do? Go along to screenings without subtitles and pretend? Send him and FJM and stay home? Or wait for the random subtitled screenings that come along and force FFB to wait, too.

When I imagined motherhood, I was realistic about many of the challenges I might face. About not being able to hear FFB without my hearing aids, about how I would need to adapt to that. And honestly, I think I am doing pretty well. But what I hadn't accounted for was what he might miss out on because of me...

And this is what I am just discovering. He's got a new playmat, it plays musical songs, I have no idea what they are or what is being sung. I cannot interact with him about this.

He has a xylophone... it's too high for me to hear so in order to play it with him, I have had to make FJM sing the notes an octave or two lower and memorise this pitch so that I am hit the notes and sing with him. But even then I have no idea if I am getting it right.

This month, I am taking him to baby swimming because I want him to grow up confident in the water but I cannot wear my hearing aids for this and I can only hope I will be able to follow what is going on and ensure he gets the best possible experience.

I guess I am just having a new year, new mum wobble made worse by today not working out.

I don't want FFB miss out.

Which, when I've finished eating my feelings in the form of the Butterkisk popcorn I bought especially for the cinema, is why I am even more determined to win the fight in educating cinemas on the importance of subtitling more films. I am even more determined to ask for accessible adjustments wherever I go. Because it's not just about me anymore and whether I am able to enjoy something. It's about my son. And being a good mother to him. And giving me the same opportunities that children with hearing mums have.

First step, to learn all the songs for the local baby music class we're going along to. I am going to email the teacher and ask her for them so that FFB sees me singing along and can follow it too.

And everything else?  I guess it'll be a massive learning curve... which will run concurrently to the normal parenting one.

Happy New Year peeps!

Here’s to an accessibility progressive 2020.


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