Speaking with hands

Something that I haven't really spoken about until now is South African Sign Language. SASL is the primary language for Deaf South Africans. Right now there is a massive push to have it as the 12th official language of our country. Why? Well, when your country already has 11 official languages, leaving out one that is so vital to the Deaf community is just wrong on so many levels. SASL isn't even offered as a first language option in schools and only schools for the Deaf even offer it as a subject, despite the fact that inclusive education means that all schools should technically cater for this. I remember doing my teaching diploma and coming across TWO pages of SASL to equip a teacher in the classroom. TWO pages people. That's like me reading and learning our National Anthem and claiming I know Zulu and Xhosa. 

My Hubby and I are not fluent in SASL. Many reasons. Firstly, we were both sent to mainstream schools which meant we never learnt SASL until we became interested in it post high school. Secondly, as we work in a hearing environments we don't get to use it that often. In saying that, we CAN still sign and communicate in sign, but due to lack of practise I'm a bit rusty at the moment! We often sign to each other in noisy situations, even if we forget the signs, we still somehow understand each other.

So, fellow blog readers. My challenge is for YOU to learn some sign. Practise it, teach your friends, go buy an SASL dictionary. The more we spread the word, the more we can push for this to be our 12th official language.

What are you waiting for? 

It's been one of those weeks

What my aid looks like inside, so cool!

Here's the thing. My hearing aids are vitally important for me to be able to work and function. So when one decides to bomb out my life grinds to a horrific halt. Last week Thursday I was cleaning my right aid before work and the tubing crumbled. This is one of those nasty maintenance inconveniences that occur with aids. Except my hearing aid company can take up to four days to repair it, especially when it's near a weekend. And of course it just HAD to happen the week I had about a hundred practical assessments to do. Here's the funny thing about life though, you just have to make it work. Taking sick leave for a broken hearing aid is just not worth it. So, I stuck my left one in and hoped for the best.

The problem with only having one aid is that you feel HORRIBLY off-balanced. I'm not lying when I say that I crash into EVERYTHING when my hearing aids are out or I only have one in. My legs are a road-map of bruises at the moment from desks and cars. Don't get me started about how disastrous my ballet lesson was last Thursday... to give you an idea, ballet relies a LOT on balance... I looked like an elephant trying to balance on a Pilate's ball. Horrific.

Apart from the lack of balance I lost all peripheral hearing. So I can HEAR people talking to me but I have NO idea where it's coming from. Frustrating to say the least. Let's not get started about how tiring it is. My left ear has been basically doing the job of both, which means increased concentration for my brain and lots of confusing sound so I have to rely solely on lipreading. It is EXHAUSTING. I've been coming home feeling like I've been steamrolled simply for one pretty average working day. Yet, what else am I meant to do? The reality is, I need to work, and as long as I have one functioning aid, I'll be okay.

So what happens when neither work? Well, then that's it in terms of my functionality. Last year I sent one of my aids in for repairs. I woke up the next morning, reached for my remaining aid to find it gone. Cue hysterics. After frantic searching for an hour in tears, I had to message my boss explaining the situation as I could not call the school to explain (joys of hearing loss). Imagine being so completely helpless that you are tied to your house because your disability prohibits you? It's so frustrating. I sat down to do lesson prep and marking instead, angry as anything that I had lost my aid. Two hours later I was looking through my handbag for something and voila! Hearing aid! Turns out my cat had knocked it into my bag during the night. Mad rush to work, exhausted, and then had to carry on as usual.

Then there's the times my aid runs out of batteries. Hearing aid batteries last +/- 10 days depending on the aid and battery that you use. That's two new batteries every 10 days, often less. Our batteries are disposable and come in packs of 6. So basically every 3 weeks I need to restock as they are expensive and I can't afford to buy in bulk. So naturally, I run out quite often and forget to buy more! They run out at the most inconvenient times, often in the middle of teaching, so I've become skilled at changing them fast. Problem is, when I forget to buy more it's a mad dash to the nearest chemist, and since certain brands last longer I can't just buy any battery! Frustrating? Tell me about it. 

So enough complaining! My right aid was fixed and I fetched it yesterday. It's amazing how less tired I'm feeling already. Such a small thing and such a huge difference. People don't understand though, this whole week I've had comments from students and colleagues how tired I looked (gee thanks?). Thing is, it's hard to explain how one aid missing can make such a huge difference in my hearing and balance. After I picked it up yesterday, I literally shoved it into my ear and sighed with pleasure because it's like the world snapped back into focus again.

Note to self... Get aids serviced during holidays only!  

2 x HoH = Interesting times

So I've mentioned my long - suffering husband in previous posts, but something I haven't spoken about is the fact that we share something large in common... he's also hard of hearing!  I give him full credit for keeping me sane with this disability,  there's something extremely comforting about the fact that he knows exactly how I am feeling in certain situations without me saying a thing.

Some background : Hubby has profound bilateral hearing loss (if you remember from my previous posts that means he has a 90+ decibel loss in both ears, so quite a lot more than me). He wears two behind the ear hearing aids which largely help him to function normally however he struggles a LOT more than I do in noisy situations. To put it into perspective he is completely deaf without his aids in unlike me who can hear noise still. Yet, he plays rugby, coaches and is a primary school teacher so like me, he loves to challenge the stereotype. You can usually tell he's HoH as he has that 'Deaf accent' I spoke about before.

While it's great having someone who understands what I'm going through it leads to an interesting home life.  Like the fact that I can have entire conversations with him before I realise he hasn't heard a word I said because his aids were out. Or shouting matches from different rooms. My favourite saying to him is "stop being deaf, it's just rude" which leads to open mouth reactions from others but we just laugh about it. An entire tornado can rip through our house at night and he'd sleep peacefully through, so the dog has learnt I'm a better target if he needs to go out at night! (I often wake up Hubby to do this so I don't have to. My favourite is that it is dark so he can't see me and yet he asks me questions that he can't hear the answer to, leaving me gesticulating wildly shouting even though I know he can't hear me). It also gives him the excuse when watching rugby to say he didn't hear me because he's deaf. Except as most women will agree with me on, there's a big difference between hearing and LISTENING!

It's mostly through Hubby that I've been introduced to the extreme prejudices of society. I often operate as his ears and mouthpiece out in public as I am a fluent lipreader while he isn't. It doesn't mean he can't do things without me,  it just means things go faster if I do the talking. But what frustrates me is when people realise his disability and then ignore him only focusing on me. A good example,  we were at a local pet food store buying food for our fur children. We get to the counter and Hubby gives the lady his card. She asked him which account he wanted and due to her quiet voice he asked her to repeat herself.  When he missed it for the second time,  I stepped in and repeated it louder for his sake. From that moment the cashier completely ignored him,  giving me the machine for the pin (which I handed to him) and then giving the card back to me (handed to him again). I was really confused before I realised that she just saw me as the easier option. It happens quite a lot when we go out and I get more and more annoyed. Ignorance is insulting, deaf does not equal dumb and disabilities do not make you helpless. I just wish more people would understand this.

Because life has a funny side too

I've often been asked to share my funniest stories around my disability. See, here's the thing, I am HIGHLY sarcastic. I feel as society gets more ignorant, my natural survival instinct is to turn to sarcasm. So often this can lead to some pretty funny situations around my disability. Other stories arise from my job, my hobbies and many more. Here are my top 3:

STORY 1

(person calls something to me from across the room)
Me: "huh?"
(person repeats themselves)
Me: "Sorry?"
 (person now getting really frustrated)
"OH MY WORD ARE YOU DEAF OR SOMETHING?"
...
...
...
Me: "Well you see... yeah. I am"
(Awkward silence)

STORY 2

Some of you may know that I studied a degree in Drama and Perfomance studies which included lots of stage time as an actress. In a play I was in, one of the scenes involved my co-actor grabbing my head and throwing me to the floor (Greek tragedy thing, don't ask). During one of our performances, he grabbed me and as he did, my hearing aid popped out. Now I'm a pretty seasoned performer, so I didn't break character but in my head I'm thinking "OMG OMG what am I going to do, how am I going to hear my cues, what if he stands on it, that R15000!". The poor guy had no idea what happened so he flung me to the floor and strode off... Now I had two choices, break role and search frantically, or try to just go on. So what did I do, I carried on of course! As I stood up to go weeping back to my platform, I spy my aid lying on the floor. In a dramatic flourish, I swooped down and plucked my aid from the floor and popped it in my ear, staying in character the whole time. My own mother in the audience didn't even realise what happened! Still count that as the smoothest thing I've ever done. 

STORY 3

Lipreading is a VERY useful skill to have as a teacher. It's one of the times where my 'disability' turns into a huge ability. I always joke with my grade 8s at the beginning of the year saying they've got to be careful what they say at the back because I can see everything. Not even 5min after saying this, I'm explaining how I'll keep them in at break if they haven't done their homework and I see a girl whispering to her friend "no she wouldn't, she's just trying to scare us" and mid paragraph I whip my head round and say "yes actually I would, don't test me" only to have the whole class look at me open mouthed. I shrugged and went "it's my superpower"... one whisper from the back "cooool". 

Let's be politically correct...

So here's the thing.  Around disabilities the topic about political correctness comes up. You know,  the fact that I'm not hearing impaired, I'm hard of hearing... or that someone isn't short, they're vertically challenged (okay maybe not that last one), but it's true that society has become so caught up with being politically correct that they don't realise THAT is not the issue. Mocking, diminishing... those are my gripes. People say "don't take me so seriously" but would they feel the same if the tables are turned? We say, oh they just being politically incorrect but there is a difference between that and just being insulting, insensitive and plain rude.

Asking if I read braille? That's not politically incorrect, that's insulting.

Covering your mouth when you speak to test me? It's not a joke that's rude.

Asking how it was possible that I have a degree with a disability? That's not ignorance, that's being diminishing.

Saying you know sign language and then pulling a rude finger sign? That's not funny it's insulting.

Slowing down and using easier words because I ask you to repeat what you said? That's belittling.

Whispering something and when I ask you to repeat you say never mind? That's hurtful.

Rolling your eyes and sighing when I've asked you to repeat something for the 5th time? That's rude.

Inviting me somewhere extremely noisy and then getting annoyed when I don't join in or leave early? That's insensitive.

Calling me brave and other adjectives because I continue to perform adequately in my everyday life is not a compliment. Am I meant to roll over and give up?

I'm not saying you need to tiptoe around disabilities, because that's not what this is about. I'm happy to chat and explain my problem and share my stories, but I'm not here to be the butt of a joke at a dinner party. It's NOT entertaining to make light or fun of someones problems, so why make fun of mine? Yes, I tell funny stories and share little anecdotes about my life because you need to laugh in life. There is a huge difference between gentle teasing when you know the person well and plain old belittling, mocking and insulting. So think next time before you ask a stupid question or make a joke about someones disability: Would you find it funny if you had to live with that and it was directed towards you?

My worst thing I've ever been told was actually by someone who had no idea how insulting they were being. I guess everyone says things without thinking but the fact that they didn't even realise that it hurt was the hardest thing. I got told that "you not REALLY disabled because like, you are pretty normal and your hearing problem isn't that much of a big deal, people have it far worse". Yeah. I'm well aware that people have worse problems than me. There is ALWAYS someone who has it worse. Does that make it any easier?

I once read a story about a man who had to carry a huge rock up a mountain. He picked it up, and carried it, but it was heavy and he struggled. He continued up, stopping along the way, with each step it felt heavier but he persevered. When he reached the top he found a whole crowd of people who had also carried their rocks up the mountain. Each rock was a different size, a different shape, a different weight, yet every person had struggled along their own journey. That mountain is a bit like life. We all have our own rocks, our own burdens to carry, just because they are different does not make it any easier for that person.My burden is my hearing, and yes, to me, it's a pretty big burden. Maybe to someone else it is small, but they aren't the ones carrying them. 

Can you hear me now? (Covers mouth)

Well, this is me!

I don't like to be seen as different so most of my life I've kept my hearing loss a relative secret. It's not nice to stand out in that way and I figured most people wouldn't understand. It leads to awkward dinner party conversations, tactless and often hurtful teasing, and many strained smiles as you have to deal with the ignorance. I've gotten a lot more tolerant as I got older but it hasn't been easy.

So you know by now that I have hearing loss in both ears. Technically my right ear is worse than my left, and my left ear can hear higher frequencies better than my right but it's all words on a page really. Here's the deal, without my aids in, I can't operate in a hearing world. So how do I explain it? Well, imagine that you are listening to the radio in your car. Suddenly someone turns that volume control right down, not all the way, you can still hear some sound, but enough that you are straining to hear what song it is or what the DJ is saying. That's me without my aids in. I can still hear sound, some better than others, but it's a strain to figure out what's being said. I also lose all the 'soft' sounds in life. Such as the waves at the beach, or the trees rustling, or the car engine noise. Those completely disappear. Now imagine someone came and turned the radio back up but they adjusted the frequencies. The bass is too strong, you can hear the music but not the lyrics, you go under a bridge and it crackles.  That's kinda my life with my aids. They are AWESOME devices but I don't magically hear the same as my hearing peers. I can't listen to live concerts as they distort and amplify sound and I get migraines. When there is just too much background noise they can't pick out the main sound and amplify EVERYTHING so I just get white noise. It sucks, but I don't want pity. Just to explain that it's not easy in a world that is so auditory. Phoning people is an absolute nightmare, but often necessary as most companies won't reply to emails. 

Still, I work as a drama teacher (the noisiest job I could have chosen!) at a hearing school and love every moment. I've mentioned before that I can lipread. Well, it really is my superpower. The upside is, I can tell immediately if someone is talking about me, even if it's across the room. The only downside is that sometimes I find myself eavesdropping on conversations I'm clearly not part of! Whoops! The thing is, people love testing this out on me. I literally have adults who will block their lips and ask me if I can hear them. REALLY? Everyone thinks it is hilarious. That is, everyone except the person who has to deal with this struggle on a daily basis. Or when people mouth rubbish to me. When you talk, the air that rushes through your lips create a type of movement. Remove that and it's a lot harder to read lips. Accents, lisps and lazy lips also make lip reading harder so it is definitely NOT an exact science. 

I also don't SOUND deaf. Now this is actually a legitimate thing. My husband and I call it 'the Deaf accent'. Basically if you can't hear yourself speak, you tend to talk with a bit of a lisp or an 'accent'. If you don't know any better it can even sound foreign! I don't have one. I probably only lost my hearing after I had already acquired speech. That and the MANY speech and drama lessons I attended from age 9. So I speak clearly and articulately which is probably why people tell me I 'look normal' (can't express enough how INSULTING that is!)

So that's me. I'll post another update soon so keep reading! Promise more funny stories to follow...

But... You don't LOOK deaf!

Believe it or not, I commonly get told I do not LOOK deaf... I love this observation, I mean what is a deaf person meant to look like? Five arms and one leg? A giant neon sign that flashes above my head announcing it to the world? Yes... I look relatively normal, and I say relatively because I am unique and what is normal anyway? Still, it can be frustrating to be told this. My hearing aids are quite small and fairly unnoticeable so often people don't realise it until I point it out and blurt out something nonsensical such as this. So my focus on this blog entry is to clear up some of this misconceptions...

You wear hearing aids! Are you deaf?

Asking someone who wears hearing aids if they're deaf is like asking a person who wears glasses if they are blind. Yes, to some extent I am deaf, but there is such a wide spectrum that it's hard to classify. To put it simply and in layman's terms, there are three main categories: Hearing, Hard of Hearing and Deaf. 

Hearing

Most adults have some degree of hearing loss, but unless it impacts their daily lives they are classified as hearing. Most children can have 0-15 decibel loss while adults is 0-25. Most adults won't even be aware that they have any loss unless they have seen an audiologist! If you are hearing you are able to hear soft sounds at most frequencies. 

Hard of Hearing

In order to be hard of hearing, you need to have mild-severe hearing loss. This is a 20-90 decibel loss. You can either have it in both ears, or just one ear. The main factor around people that are hard of hearing is that they struggle to operate in environments that are noisy, or where there is background noise. Hard of hearing individuals are usually able to wear a hearing aid to help them, there are many different types of aids that help and that suit different people. Hearing loss can occur from birth, ear infections, loud environments, head injuries or quite simply, old age. I have a moderate to severe bilateral loss, which means I have a loss of hearing in both ears, at different ranges and frequencies. Doctors have said that it was probably due to the MANY ear infections I had as a baby and child. 

Deaf/deaf

This is quite a difficult one to explain. Technically individuals with profound hearing loss (90dbl and more) are classified as deaf as they can only hear extremely loud noises, or none at all. Some can wear hearing aids to help with sound, others can't. Technically if you choose not to wear a hearing aid and you can't hear without it, you are deaf. I'm obviously keeping this as simple as possible so I'm simplifying a lot! Being Deaf is another story. If you capitalise the letter that means you are part of the Deaf community and culture. This is largely a culture that speaks sign language (SASL for South Africa!) so you can be part of the Deaf community if you are an interpreter or CODA (Child of a Deaf adult). The Deaf community is fiercely proud of their culture and fight for the right for Deaf children to learn sign language. Currently there is a huge push to make SASL our 12th official language, so watch this space!

Now I've probably bored you with my long speech, but it is important to know and understand the difference. Being Hard of Hearing means that I'm kind of half in the Deaf community and half in the hearing. Although I can function relatively normally with my aids, I'm still not hearing and therefore often feel stuck in the middle. My next blog post is going to talk about my experience in my Hard of Hearing world...

Let's start at the beginning...

So my reason for this blog is simple: September is Deaf Awareness Month and every year I put up a proudly HoH post on social media and get plagued with questions regarding my disability. There are SO many misconceptions regarding hearing loss and what goes with it that I decided I would start a blog to answer commonly asked questions and basically just to share with you my daily life.

This is who I am:

Brief intro about Amy Nicole Barnard!

Well, I was born and raised in a coastal city in South Africa called Durban and have lived here ever since. I am what is politically correctly known as 'Hard of Hearing' (Hearing Impaired is the lesser known version, partly because we see the word impaired as being a tad bit of an insult.) 

Basically I have what is known as moderate to severe bilateral hearing loss (more about what that means in the next blog post!). I wear these EPICALLY small hearing aids in each ear that are called CIC (Completely in Canal) so you have to basically be looking at my ear in order to see them. I'm a bit of an unusual case as I was only diagnosed as a young teenager due to the fact that it was just never picked up on when I was younger, and I have what is known as degenerative hearing. I can function pretty normally in society as I read lips fluently plus I'm really good at invading people's personal space to hear them better! I am a High School Drama educator at a mainstream school so I like to think I kick stereotype's rear end out the door!

I don't consider myself different, my ability to read lips is my Superpower (you have NO idea what convos I eavesdrop on...) and I surge on refusing to allow my 'disability' to change me or the way I live my life. In my next blog post I'm going to address some of the most commonly asked questions and statements that get directed to me on a regular basis, so don't worry, you're going to get very knowledgeable about my life as an HoH person and what I've learnt along the way!