Deafness is a continuum…. it’s not all or nothing.

As I’ve mentioned before, I’m deaf. I intentionally use the term ‘deaf’ rather than hearing impaired, hard of hearing or Deaf. I’ll explain why in a moment, but first let me explain what the difference is between the terms:

Deaf, with a capital ‘D’ refers to people who are born Deaf, or become so prelingual (before they can speak, usually this means before 12 months of age).

Nyle DiMarco is probably one of the most well known Deaf people  today following his winning both America’s Next Top Model Cycle 22 and Dancing With The Stars Season 22.

Hearing impaired, in contrast, is usually how the hearing community describe people with a hearing loss. As so we’re missing something, that we’ve lost it and that we’re not ‘normal’ as a result.

Hard of hearing is kind of in the middle. It describes the reality but doesn’t fully identify with either the Deaf or Hearing cultural perspectives on deafness.

The term ‘deaf’ is usually used by those of us who have accepted our deafness, but were late deafened (post lingual) and/or have a progressive loss.

It’s not to say that we don’t have any residual hearing but that we’ve accepted having little, to no, hearing.

Deaf, deaf, hard of hearing or hearing impaired – we may, or may not, choose to use devices such as hearing aids, cochlear implants (CI) or bone anchored hearing aids (BAHA). They also may be completely useless and not viable options for us too.

Some of us have progressive loss and some us have loss that literally can be different day by day/ moment by moment. I can wake up one morning with no hearing at all and that day, my hearing aids will make no difference whatsoever. Other days they make a big difference.

So why do I personally use the term ‘deaf’. I use it because I have accepted my deafness but also because it helps me. If I say I’m hearing impaired the onus is on me to communicate. When I say that I’m deaf most people take the time to ask me about the best way of communicating with me and make sure that I can see them. So I use the term deaf.

I have a progressive hearing loss. It was first identified when I was a toddler. If my mother called to me from behind me I wouldn’t answer. Once she worked out that I wasn’t just being disobedient it quickly became apparent that my hearing wasn’t quite right.

I spent my childhood in regular visits to audiology and Ear, Nose & Throat (ENT) specialists. I had grommets/tubes surgery on several occasions which is designed to equal up the pressure on either side of the eardrum; though usually they’d get me under the anaesthesia only to find that there wasn’t a fluid imbalance and they weren’t needed!

Unfortunately, I also broke my nose on a number of occasions which also required surgery. My mother has many ‘happy’ memories of sitting at my hospital bedside marking her students work, or writing their report cards, while I recovered from various surgeries.

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I was born and raised in England and so the school system is slightly different there in that you go up to Secondary School (High School) at the age of 11. My last year of junior school I’d struggled a great deal more than in the past so the summer before I went to secondary school I had my first hearing aid fitted; in my worse ear, which was my left.

I also had braces and glasses fitted and a baby sister born in the same week!

Anyway, I wore one hearing aid for the next few years and learned how to advocate for myself. I learned to make sure that I always had spare batteries, and the school office kindly kept spare batteries for me too. I learned to make sure that I was always sat in class so that I could see the teacher’s face and most of the students’ faces too.

Basically, I learned to ‘pass’.

My school, Townsend Church of England School, was partnered with Heathlands School for Deaf Children. While some of the deaf children came to Townsend to be integrated in mainstream classes, I went the other way. I was mainstreamed and attended Heathlands several times a week. Initially I went for work experience as I planned to be a junior school music teacher at that age.

However, once there the school recognised that I was having some issues and had me attend speech and language therapy as well.

Heathlands, to this day, promotes all forms of communication including spoken language as well as British Sign Language (Yes, BSL is very different to American Sign Language).

As a result, while I speak very softly, as I ‘hear’ my own voice inside my head as much louder than it is heard by others, I speak well and don’t have a typical ‘deaf’ accent.

However, I have never truly heard more than about 20-50% of what’s actually being said to me.

I guess!

I take the parts of the words that I hear, and I make up the rest, and I’m very accurate.

Once in a while I get in a mess. Usually because I’ve missed the context of a conversation and while the conversation itself made total sense to me, I was actually talking about a completely different subject to that of the person I was talking with.

I speech read. That means that I don’t just lip read but that I watch your whole body, your demeanor and mannerisms to give me clues as to what you’re saying.

Once again my test results are confusing for health professionals. I now have a severe hearing loss. However, I still score over 90% on word recognition.

The most likely reason for this is that I am a reader. I learned to read as a very young child. In fact, I was reading books before I started school at the age of 4. I remain an avid reader to this day.

As a result I have an extensive vocabulary and therefore have a huge lexicon of words to choose from when I’m trying to work out what is being said.

As I said before, I ‘pass’ in the hearing world. Or at least, I did.

In my early 20’s my hearing deteriorated further and I was prescribed a second hearing aid for my right ear. I refused to have two aids for several years. In my mind, one hearing aid meant that I had a hearing loss but two meant that I was deaf. It took me a while to culturally adjust to the concept and I didn’t really accept being ‘deaf’ until my hearing got a lot worse.

In 2014 I reached the stage of being ‘legally deaf’ in Canada. That means that I can no longer hear enough to ‘pass’ with just my hearing aids, but that I have to rely on other forms of communication as well. In my case, that means that I now have to be able to see people’s faces to ‘hear’ them and that a standard phone, always difficult, became impossible. It’s when I started needing a ‘hearing dog’.

Thankfully I heard about the Canadian Hearing Society and have been fortunate enough to work with some fantastic staff at my local office who have helped me identify resources that help me specifically.

So I’m now working my way through ASL classes (which by the way really hurts my hands!) so that I can communicate in an emergency situation or if I get to the point where my voice can no longer be understood by others.

They also helped me try out TTY (TeleTypeWriter) which works somewhat like text messaging over normal phone lines as long as both parties have TTY machines.

I also tried Relay services which is where I can type or speak my end of the conversation and an operator will type the responses back to me. I hate the lack of privacy in that service and also find that most of the time if I use it to call people, they hang up as they don’t listen long enough to the operator to realise that they’re not being asked to pay for the call!

As a result of trying different devices I now have a highly amplified phone at home and in my office; which as long as I use it with my hearing aids, and in speaker mode, and know what the conversation is about – I can get by. Just!

I rarely use it. It actually amplifies sound to the point that hearing people should really be wearing ear protection if the sound was continuous!

Thankfully, most of the time I don’t need to use a phone. The use of smart phones has become so prevalent in today’s society that I can text, or email, the majority of people that I interact with.

For businesses I can usually use secure, online services such as secure messaging or online chat facilities. Or, in many cases I just simply go and see them in person.

So for example,  if I need to make an appointment for my car to be serviced, I drop in to the garage and book it in. Yes, it takes a little more time out of my day; but it’s effective.

However, every now and then I will hit a big brick wall!

This is where I am required to use the telephone, and only the telephone is allowed, to accomplish something that I need to do.

Now to be fair, the organisations stating this requirement often do provide TTY facilities (known as TDD in the US) but I don’t have a TTY device.

If you recall I didn’t like it and I also found that many times it would take hours for me to get somebody to answer it. Also, as I can manage 99% of my life without such a device why would I invest in one?

Additionally, right now, my breathing is so difficult that I can’t speak clearly. As I speak softly at the best of times, I am not currently audible on the telephone so traditional relay isn’t an option for me; even if I was willing to deal with the third party in my conversation and could get the organisation to answer the call.

I am not yet fluent enough in ASL to use video relay services.

So I’m left with a conundrum.

I have to get something done but I’m being told that the only way that it can be done is by telephone, which I can’t use.

Now I could ask a friend to call for me. Bizarrely, given that the reason these organisations give for insisting on the telephone is that of security they don’t seem to have a problem with a ‘complete stranger’, from their perspective, acting on my behalf.

Yet I have two problems with this.

1. I’m 44 years old and I have been independent a very long time. Why should I have to have somebody else do something for me? It’s not convenient for me, or for them, and often I don’t really want to share my personal information with them.

Which doesn’t detract from the fact that I have some awesome friends but rather speaks to the fact that I just don’t feel that it’s appropriate.

2. More importantly, as far as I’m concerned though, is why should somebody else get to dictate to me what kind of device I use to help me with my disability?

Can you imagine being told that you have to use a specific make and model of wheelchair to go shopping because the mall doesn’t allow any other kind in their stores?

So what do I do? I advocate and educate. Repeatedly.

Today I had a win! Kind of.

As I’m still not doing so well I needed to reschedule a trip that I had planned for a couple of weeks time. While the entire booking had been made online and all the accompanying reservations, and requests for an accessible room, had been managed online, I could only reschedule the trip by phone!

Thankfully, on this occasion, with a bit of detective work I was able to find an email address for the right office in the organisation in question. So I emailed them and explained my situation.

The first response was probably automatically generated, or at best was a cut and paste response. Please call the following number to reschedule.

I replied, explaining once again. This time I got a human response. Initially they didn’t know how to help but would find out. This is when businesses keep or lose my business. They did find out and made arrangements with me to connect with them by live chat, and to connect to the manager specifically, so that they could help me. But here comes the kicker…. it was made very clear that this would be an exception!

Now I really do appreciate the fact that they did make an exception, that the lady that I worked this all out with today was fantastic and went out of her way to help me reschedule everything and make sure that all the disability accommodation requests were carried forward to my new booking.

However, why did this have to be an exception?

There are many people, not just deaf people, but those with speech difficulties or social anxieties about using the telephone, that would benefit from there being alternative communication methods to the telephone.

Which brings me back to my opening statement today. Deafness is a continuum. It’s not all or nothing.

Yes, there are people who are culturally Deaf. They are comfortable with relay services and usually fluent in sign language.

Yes, there are people with normal or near normal hearing where a little bit of thought and speaking a little louder will help them.

However, there is huge community in between these two points where our deafness is at different points.

We can hear some frequencies and not others.

Amplification helps some and not others.

Personally, I actually have something called ‘recruitment’ as a component of my deafness which means that I can’t tolerate loud noises either. They sound disproportionately loud to me and give me migraines. My hearing aids actually deliberately dampen loud noises!

So what works for me today, may not work for me tomorrow. A case in point is that right now my amplified phones are useless for me as I can’t talk well enough to be understood.

The Accessibility for Ontarians with Disabilities Act actually states that there are different kinds of deafness using the terms I described above. However, in their guide to help organisations comply with the Act there is an assumption that all communication is in person.

Which works fine, until it doesn’t.

The company that I was trying to sort things out with today is based in Florida, USA. My local gas company no longer has any offices in town.

I can’t physically go and see either of them in person.

To date, I have not yet had to deal with this conundrum and found any valid reason for why the telephone is being insisted upon.

I use secure online messaging with Immigration regarding my sponsorship of my mother’s residence in Canada.

I use secure banking for all my financial activities.

I can access my medical test results through an online secure website.

So if my most personal and intimate information can be handled using secure online services I am quite sure that rescheduling a trip, or arranging for a gas line to be installed, can be done using the same technology.

So come on people – it’s 2016! Lets use the technology that’s available to us and stop discriminating against the disabled.

Let’s get educated and understand that it’s not a case of hearing or Deaf –  there’s a whole continuum in between.

You don’t have a right to dictate to me what equipment I have to use, if any.

It’s my right to choose and that’s protected by the Canadian Charter of Rights and Freedoms.

I do my part. I see it as my responsibility to advocate for myself. I do speech read. I do work very hard to ‘hear’. I use my hearing aids despite the fact that they’re not like glasses. They don’t return my hearing to ‘normal’.

In fact hearing aids, CIs and BAHA’s have a couple of major problems that the hearing community don’t seem to understand:

They only work when we use them! As soon as we take them off; which we have to do to shower, swim, sleep or just give our ears and brains a rest – we’re still deaf.

They don’t make our hearing ‘normal’. They just give more feedback to our brains that we have to interpret. Our brains have to learn to understand and interpret what we ‘hear’. It takes me about 3 months, every time I get new hearing aids, to adjust and I wear mine most days from the moment I get dressed to the moment I go to bed.

For those people who use CI’s or BAHA’s it takes about 2 years!

So please understand that when I say, “I don’t use the telephone, please text or email me instead’, I’m not saying it to inconvenience you. I’m actually simply informing you that this is how I choose to communicate.

So if you’re somebody who has to communicate with people as part  of your job please don’t assume that everybody can either use the telephone or is Deaf. Please make sure that you have alternative forms of communication available.

To those people that I’ve come across who have gone out of their way personally to accommodate me – I thank you.

People have used their personal cell phones to text me; or email me. They have listened to the voicemail on my phone and actually sent me a text or emailed me instead or repeated their names and numbers several times, very clearly.

I thank you.

However, I also wish it wasn’t necessary.

We have the technology – let’s use it!

One Reply to “Deafness is a continuum…. it’s not all or nothing.”

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