“Deaf in a Masked World”

Communication has never been the easier for someone like me – a deaf person. Now in the current COVID 19 climate it has been made much harder due to the use of masks.

Don’t get me wrong the masks are very important in the fight against reducing infection but it’s the design of them which causes issues for folk like me.

Go into your typical supermarket, there’s lots of different noises from the beeping of till scanners, rustling of bags being packed, trolleys squeaking their way around the store, people having conversation, babies crying, clatter of items as people put them into their trolleys, tannoy announcements and so on.

You get to the till and in amongst all this noise you try to catch what the operator says. Not always easy if they don’t look at you, mumble or it’s difficult to make out their speech due to unfamiliar accent or facial hair.

You don’t always hear all the words so you piece together what you think you have heard, and hope it’s right so they don’t then look at you like you’re an idiot if you give them an answer that doesn’t tally with what they have asked.

Now add in a mask, their voice is muffled. The louder they speak the more it is distorted. You pick up from the eyes and frown that they are getting frustrated and that sense of anxiety rises inside you, so you just nod and hand over your card/money hoping that’s what they are asking for.

Or maybe you are stacking the shelves when a customer comes up behind you to ask you something. You don’t hear them. They then manage to get your attention. You struggle to make out what they are saying. They become more frustrated gesturing wildly in the vain hope you might be able to figure out what they are saying. Sometimes they walk off muttering about the assistant that must be deaf as s/he is so stupid because they struggled to help you. Leaving you stood there feeling deflated and frustrated fighting back the tears.

Attend a medical appointment or go to have a COVID 19 swab test, feel totally overwhelmed by the difficulties in hearing and understanding what is being asked of you, or what they are advising.

This is what life is like for the average deaf person. Masks that cover up faces make it so much harder to be a deaf person in a hearing world.

Whilst masks are considered to be essential it is important that folk consider how they can communicate with those who need to see their faces so that they don’t leave them feeling more isolated than ever.

So what can you do?

Buy masks/face covering that are clear to enable others to see your mouth/face for easier communication.

Speak clearly and slowly giving the deaf person time to process what you are saying.

If you are able to write down information then do so.

If there is enough space, remove your mask temporarily to communicate with the person who need you to do this.

Most importantly of all treat the deaf person with respect and understanding just like you would like to be treated yourself should you ever need support.

Unmasking the world…

“Adjust… pause…action!”

It’s a couple of weeks since I upgraded to my latest cochlear implant processor.

It’s taken a little while to adjust controlling the various settings by using my iPhone rather than pressing various buttons on my processor. There is a brief pause in sound as I switch from one setting to another which annoys me slightly particularly when needing to answer a telephone call as have to wait for it to kick in before I can speak to the caller.

It also seem to randomly reset itself to a noise reducing programme whenever I have used the loop. Not sure if the audiologist set it to do this or if it one of those random kinks in the programme settings. This inevitability means I have to faff about changing the settings again whenever I switch the loop off.

Some sounds are still TOO LOUD such as paper rustling. I need to get a sensitivity programme setting put on as the audiologist didn’t add this. I have found out that they can do this from talking to other CI Users online.

Onto the positive stuff… the sound quality is on the whole much sharper and clearer which makes it easier to follow conversations.

I discovered by accident that if I have Bluetooth on, I can listen to a video, play music or have a telephone conversation on my iPhone, via an internal loop which kicks in automatically. It is fab, the sound quality is really clear. It is like having internal headphones as no one else can hear what is being said or played when this internal loop kicks in. The first time this happened I was grinning so much in delight, that the sprogs were looking at me like I had lost the plot!

I have three programmes currently on my processor. Programme 1 is the main one I use. Programme 2 reduces some of the background noise so that what is in front of me is louder. Programme 3 is Forward Focus which cuts out background noise dramatically to a whisper and amplifies the voice of the person whom I am facing. I tested this out today at our church picnic as was struggling to hear above the LOUD music that was being played despite turning the volume right down on my processor. It was impressive how well this worked in supporting me to hear the conversation of those I was talking too, but at the same time a little weird that I couldn’t hear what was going on around me.

I have been using programme two when in the car on my own to listen to the radio as it’s good practice for me to listen to a range of voices. So it’s been a pleasure to actually be able to follow more of what’s been said on the radio rather than guessed what’s been said. This only really works for me if there’s one speaker without background noise or music.

I have solved the annoying wrap around ear hook issue by using the smaller ear hook (not a wrap around one) which came with the aqua kit. Feeling smug that it has stayed put despite the audiologist stating that it wouldn’t stay on for extended periods.

Haven’t yet had the courage to test the aqua kit out as slightly scared that I might not fit it altogether correctly and end up destroying my processor accidentally! I will pluck up the courage at some point I am sure.

I have been really tired the last couple of weeks and suffering from headaches. It took me a few days to twig that it was linked to getting used to my new processor. Hopefully as I get used to it I won’t feel so wiped out by the end of the day to the extent that I am switching my implant off in the evenings just to have some quiet time.

What’s been lovely is how my workplace has been really supportive in meeting my needs and providing training in deaf awareness to those that I work with so that they are more aware of the issues I face and what they can do to support me. My work colleagues are a lovely bunch and pretty on the ball anyway recognising when I need to have five minutes away from it all, providing a brew or some snacks to re-energise me or making sure that I am included in conversations. It might not seem a big deal to the average person but for someone like me it makes such a difference knowing that I am supported to be part of the team, rather than on the fringe desperately trying to make sense of it all.

So it’s been an interesting couple of weeks adjusting to my new processor and there are a couple of little kinks to sort out but overall I’m impressed with it. Technology moves so very fast that it’s hard to imagine what the next upgrade will involved but for now I shall enjoy the advancements made in the last few years to get me to where I am now.

Nuclear 7 Upgrade

After 5 and a bit years I have been upgraded to the newer implant (the outer but not the bit that’s inside my head). It’s a bit like upgrading your mobile to a newer model.

The sound quality is meant to be sharper but will take a little while for me to adjust to it. At the moment it sounds slightly echoey and some sounds are a bit too LOUD such as rustling paper.

The aid that I wear on the outside of my head is smaller and lighter. They have provided an ear hook which I’m not too entirely keen on as feel like I’m wearing a mic! But guess I will get used to it as apparently if I just use an ear hook like my previous one it is more likely to fall off.

I have also been provided with an aqua kit which means for the first time ever I can go swimming with my aid on rather than swimming in a world of silence. Slightly nervous about testing it out as have to make sure I fit all the parts on correctly to ensure it is watertight. A bit daunting when aware that my aid is worth over £5000 so not a lot of room for error!

The coolest thing about my new implant is that I can control it using my mobile phone. I can adjust the volume and programmes easily according to the environment I’m in. At tea tonight I turned it way down as the family were being a tad too noisy for my liking!

I also like the fact if someone calls me now on my mobile the loop setting automatically kicks in if I have the Bluetooth setting switched on my mobile. This will hopefully help me a great deal as one of my biggest anxieties is around making voice calls when I am on my own as can struggle to hear these.

So it will take a little while for my brain to adapt to the changes that the new implant brings so be patient with me if I’m not quite on the ball when we next talk.

World Downs Syndrome Day

Today is World Downs Syndrome Day.

The day where folk wear odd socks,

And sprout facts about Downs Syndrome.

But what is it really about?

It’s about saying that although those with Downs Syndrome may have an extra gene,

They are still the same as you or me.

We all have our quirks.

We all face different challenges in our lives.

We all experience joy and sadness.

We all have different levels of abilities.

What this day is about,

Is to remind you that despite the label that society has put on those with Downs Syndrome,

They should be given the same opportunities as you or I might get in life.

But most of all they deserve to be treated with respect from others just as you or I would expect to be.

“Ten Years…”

Ten years ago what was left of my hearing in my left ear was removed and replaced with a cochlear implant.

Ten years ago I was lying in a hospital bed wondering if the operation has worked whilst my head throbbed in pain.

Ten years ago I entered a world of silence for three weeks until they switched the implant on. We waited with bated breath and suddenly garbled sound rushed in sending my brain into overdrive trying to figure out what was being said.

Ten years on I hear sound. Some sounds are familiar, others new and some still to be discovered.

An amazing ten years of hearing with a cochlear implant. That’s something worth celebrating right?!

“Decrease in sound…”

For a wee while I’ve been having some issues with my cochlear implant.

Batteries were barely making it to 2 days and the sound quality appeared to have dropped which made it harder to hear in busy settings.

Initally I thought maybe the change in brand of batteries given out was the issue, or that I had got a bad batch. My local audiology clinic informed me that they hasn’t had any other complaints and it must be my implant.

So I contacted the implant team at Manchester who sent me some parts to swap over on the outer bit of my processor. This still didn’t resolve the issue despite me tweaking and replacing various parts.

The sound was definitely getting worst and I must admit that there was a small niggle in the back of my mind that maybe there was something wrong with the internal processor as it’s been in my head for 10 years this August (amazing huh?!). The final straw for me earlier this week was struggling to hear a colleague sat across from me, as all I could think whilst she was speaking was, “She sound so muffled! There’s something not right here.” So I got in touch with the Implant Team at Manchester and arranged to go in to be seen.

So off I went taking the girl child with me on the train. Got a taxi from the station to the hospital. Was very glad that the girl child was with me as really struggled to hear what people said when they were giving us directions to the audiology department.

Was seen by a lovely member of the audiology team who took apart my processor, replaced various bits on it but it still sounded muffled. And then I decided to query the question that I had originally asked my local clinic. Was it possible that the change in brand of batteries would make a different? I then got out 2 packets of batteries that I had on me to show her. One was an old packet of batteries which I had forgotten about and found in my bag earlier and the other was a new packet which I had pop in there as per routine when going out. She took one look at the new packet and said “These aren’t cochlear implant batteries. These are hearing aids batteries.” The mystery was solved! 

She gave me the correct batteries to put in and honestly it was like coming out of water, I could hear clearly again and the sound was SO LOUD after these past few months of subdued hearing. 

The moral of the story? Trust your gut instincts and read the small print!!

To be fair to my local clinic, the boxes and the packets do look very similar. My Manchester Audiologist did say that those giving out the batteries (usually a receptionist) may not realise the differences in the power between hearing aid and cochlear implant batteries.

So now I have a letter to wave at them issued by Manchester, and I will definitely be checking all newly issued boxes in future when picking up batteries.

“To screen or not?”

So unless you been offgrid, I’m sure you’ll have heard about, and possibly seen the programme “A World Without Down’s Syndrome”. I watched it tonight, and it really does make you think, not just about how far we have come in being able to eradicate one group of people, but that of many through a simple test during pregnancy. Where do we stop at, epilepsy, autism, cystic fibostic, disformation, blindness, deafness and so on?

I recall many years ago whilst at school having a discussion about the ethics of terminating a pregnancy because of a disability. I vividally recall one girl saying she would get rid of any that weren’t perfect. I asked if she has been my mother, if she had known I was deaf would she terminate me and she replied yes. That stung, so imagine now you are a person with Downs being told that there is a test and that if born today there a high chance they would be terminated. No exaggeration here, it’s already happening like in Iceland where’s there’s been 100%  uptake on terminatation on a positive dignostic of Downs in pregnancy.

I’m not naive, not to understand the full picture of what it is like to be a person with a disability, or to be a carer. My job is one where I assess, and provide support for children with disabilities and their families. They often have it rough, struggle to fight to get choices and options that the rest of the world takes for granted. But one thing all these families have in common, is joy in their child. They love them with such passion, and seek out the positives, even when the world throws shit at them.

Sally Phillips got it spot on in the programme, when she talked about, “If we have a society that is unable to care for people, then the problem is not the person.” 

People should have choices, that I totally agree with. However when given results, their choices should be balanced in information and not one sided. People cannot make a full informed choice if only given the “doom and gloom” picture. My parents were told I would never talk, or achieve much in life. Funny that, I can talk the hindleg off a donkey, and I’m fairly certain that I’ve got a fair few academic credits to my name!

If you’ve not seen this programme, I would urge you to watch it.  If you don’t actually know much about a condition or disability, don’t jump to an opinion unless you’ve actually bothered to find out more, and have actually spent time with those with the condition/disability.

Mostly I would urge you to think about what the ramifications could be for future generations if we start screening to eradicate what isn’t seen as “healthy” or “normal”, because one day whatever imperfections you have, may be seen as something we need rid of from society.