To be or not to be? That is the DEAF Question...

"It is not the extent of hearing loss that defines a member of the Deaf community but the individual's own sense of identity and resultant actions." (Anna Mindess, 2006)

While general definition of deaf is "lacking or deprived of the sense of hearing, wholly or in part" we use Deaf with a capitalized 'D' we signify those who belong to the cultural community of Deaf people. Big D Deaf Communities do not automatically include all people who are clinically deaf nor does it exclude hearing people either.

To be regarded as a member of the Deaf Community you are either: prelingually deaf (deaf from childhood)and attended one of the deaf schools or you use Sign Language as a main form of communication (in Ireland we use Irish Sign Language - ISL) or you were born to Deaf parents and can claim the native sign language as your first language; and you possess social and cultural norms that differ from the surrounding hearing communities. There is a collective sense of pride and identity of belonging that we all share as members of the Deaf community.

"Deafness is an identity, a community, a culture, a mode of being. You can be deaf and not Deaf, or alternatively, considered Deaf but not (be) deaf." (Inside Deaf Culture, 2007)

Carol Padden reminds us that a person is only a member of the Deaf community if he or she "identifies him/herself as a member of the Deaf community, and other members accept that person as a part of the community." (Padden, 1978) It also boils down to the fact: if you follow the 'rules' of the Deaf community you are 'accepted', but if you don't, you risk being ostracised by your Deaf peers. For many Deaf people already cut off from the hearing community by the barrier of communication, this fear is real: don't upset the equilibrium within the Deaf community or you may be left in limbo.

Our Irish Deaf Community is made up of a mixed bag of individuals, the Community comes with its own social standings to rival the cultural caste system in India!:

1. At the top are the extended Deaf families with 2/3/4 generations of Deaf people claiming the top 'Elitist' rungs in the Community, constantly displaying the arrogance and nous to go along with it.

2. Just below them is the radial 'ofDeaf, byDeaf, forDeaf' Deaf advocates that rage at the disability tag, and INSIST on pure ISL, lobby for ISL information and model themselves as the Deaf Culture Police stamping out Audism. You do not cross them. Ever.

3. Next are the have children of Deaf adults (CODAs) that evolve into ISL Interpreters/Deaf Community Workers in adulthood and retain the same respect due to 'elitist' Deaf groups. They are passive activists, they prefer to stay neutral on controversial topics.

4. The older generation use Total Communication (no oral communication at all, no new-fanged ISL here, thank-you-very-much!) while dominating the deaf club scene - quizzing anyone who visits with genuine curiosity and phenomenal fingerspelling skills that faze the most confident level 4 ISL student.

5. Then there are profoundly deaf 'oral' (talking) people who 'only use ISL for information' but model themselves of the hearing community e.g. liking music, playing with hearing sports clubs or going on about their 'HEARING' friends. And yet are still revered as bonafide members of the Irish Deaf Community by virtue of their 'Bovvered' attitude.

6. We do have Deaf ISL-signers with mild-moderate hearing losses who refuse to wear hearing aids although it would benefit them; they are not radicals they just go with the flow and milk the system for what its worth, accepting the 'poor disabled me' tag.

7. Next is the mainstream-educated deaf people who struggled with identity in the 'Hearing World' before discovering the Deaf Community in their late teens/early twenties and are ridiculed in their attempts to master ISL and gain the acceptance of their Deaf community peers.

8. Then there's the late deafened people who embraced ISL as their 'new' form of communication, socialise in the deaf community out of need, who are treated same as mainstream-educated deaf people, with disdain but choose not to let it affect them.

9. Last we have the 'Deaf Groupies' - a group of hearing who went out of their way to learn ISL, socialise/mix with Deaf people, marry or live with Deaf people, become ISL interpreters or work in the Community even but will always be considered bottom-feeders.

There is a lot more to the Deaf Community than this but I am just focusing on the CI perspectives within this group. As you can see, there's no 'place' for a CI individual in this list. You will not find a CI person in the first three categories. Ever.

Some of the younger recent Deaf school leavers who were among the first batch of CIs done in Ireland, have the CI but they play it down: 'it doesn't work' they moan, when in fact it DOES but they are not going to admit it.

The group listed at 6 would not meet the criteria for a CI at all; but it doesn't stop them from telling all and sundry how they were 'offered, begged, bullied' into accepting a CI but naturally they 'Refuuuuused!!!' with one or two adding an exaggerated version of how they 'punched, thumped and fought' their way out of the place!

Seventh Group (which I fall into) will really wrestle with the dilemma of getting a CI. 'If we get an Implant: will we still be accepted by the Deaf community? Will all our hard work in getting accepted be in vain? Will we have to start all over again? Will our identity be impacted?' These are all valid concerns... these are MY main concerns too.

Will I still be regarded as Deaf? Will I still retain the respect (begrudgingly awarded, I have to add) from the Elitist crowd? Or am I throwing myself back into the limbo mode I was in age 17-20 again?

In America there's a strong rejection and hatred of CIs within the American Deaf Community and this rejection forms part of their cultural 'core beliefs'. When you visit the Deaf.Com website the first thing that hits you is not the flashing news banner, but the COCHLEAR WAR!

On entering the link, there is a statement that looks reassuring that they do not judge Teenagers or Adults that chose to have a CI but the underlying context is clear - you may be 'our friend' but beware: you are also 'choosing' to leave the Deaf Community by 'your own free will' in getting an Implant.

Whoa... Strong words!

They go on to describe how CI children grow up to join the Deaf Community, learn ASL and reject their implants. They also highlight Adult 'failures' and 'disappointments' with their CIs while lambasting media representation of CIs. Hardly reassuring for someone like me!

"Let it be said right away that we have no objection whatever to deaf
teenagers and adults who choose cochlear implants for themselves. They’re making their own decisions, understand the risks involved, and undergo the surgery and post-surgical process voluntarily. We do not summarily reject these people, nor do we consider them "hearing wannabees" or defectors trying to deny their deafness. We count some of them among our friends. Those who choose to reject the Deaf community, or who deny any affiliation with it, are doing so of their own free will. That’s fine with us. " (Cochlear War Website, 2009)

Ah c'mon... This is unfair! I have no plans to reject the Deaf Community... I am NOT going to give up ISL... I will not be come hearing, even with the CI I will still be, and always will be DEAF.


Thankfully for every yin there's a yang; the American Inside Deaf Culture website gives information impartially without any bias towards Hearing Aids or CIs in anything other than a neutral positive tone. There also a reassuring growing trend of signing Deaf undergoing CIs judging the huge amount of personal blogs on this subject out there already.

Dr Paddy Ladd (another mainstream Deaf) in his book "Understanding Deaf Culture: In Search of Deafhood" highlights the struggle to belong, the unique journey to discovering and understanding themselves as a Deaf person. Ladd coined DeafHood as the key concept to expand the Deaf Community to include the various segments on the fringe of the group including Clued Speech users, wholly oral (non-signing) deaf and Cochlear Implant users.

“Deafhood is a process by which Deaf individuals come to actualize their Deaf identity, positing that those individuals construct that identity to their heightened forms by various factors such as nation, era and Class.” (Ladd, 2003)

There are many definitions of DeafHood out there but for me this one by Rob Rice sums it up beautifully:

"....Deafhood is about the introspection and process a deaf person undergoes to accept themselves as being Deaf. It is a detailed, documented process that will undoubtedly help deaf people and the parents of deaf children rationalize decisions and have conversations that concern deafness. Related decisions and conversations could include educational choices, communication and perhaps maybe even the cochlear implant procedure." (Rice, 2006)

Going on Rice's definition it seems I am currently in a very valuable process of DeafHood in my CI journey. There's a few key stages I need to 'travel' and explore:

1. Discovering, thinking, rationalising my need for the CI. That's what this blog is for!

2. Incorporating the belief of positivity on the CI into my core values. Finding other people who have CIs and get some feedback; check out other CI blogs before/after progress

3. Re-developing my Deaf Identity to include the CI. I am unsure yet how this will happen, as this process will technically begin when the CI is switched on, and will not be completed for a few year. Til I know my limits/my CI abilities/improved hearing etc.

4. Finding common grounds within the Deaf Community to ensure acceptance as a CI person within the Irish Deaf Community. This will be a tough one to crack; the CI will always be viewed with negativity. I have started this already by informing key members of the Deaf community of my decision to get a CI... only time will tell!


In a nutshell, the Deaf Community distrust and dislike the medical view that deafness is something to be fixed. They see CIs as part of that medical model, they see CIs as a threat to the future of their culture, they regard people with CIs as non-Deaf. This this the emotional dilemmas that has been bothering me since I agreed to having the CI. I was mainstreamed, never realised taht a Deaf Community existed til I was 17 years old and my Deafhood journey to 'acceptance' and mastering of ISL lasted seven-eight long, painful years, and there's been several times when I feel my journey is still not done!

I've accepted that this CI process is a necessity for me, means that I'm entering a new phrase in my Deafhood journey: it will be painful, maybe cruel, definitely tough but I have every faith that I can do this!

Which Ear to Implant?

I've always said from the beginning - I will only accept the CI if they implant my left ear. My reasoning was always along the lines of - well if it doesn't work (an inserted CI will destroy what little residual hearing you have left) I wouldn't not be bereft of speech.

Granted the left ear has the worse word recognition score, it also hears all the low environmental sounds. When I take my left hearing aid out: I miss the phone ringing on my desk, I miss the beep the Eazypass Scanner makes as I pass the Toll Readers on the M50, I don't hear the warning noise my car makes when I leave my lights on... The right ear always picked up the speech tones and high frequencies. If I had a choice of one ear to keep it would always be my right one. Until the next time I leave the lights on in my car that is!

I always assumed this weird notion that my right ear was my 'best' because I was pre-dominantly right-handed. Although I use a right-foot first and right arm/hand motion for signing, it wasn't until I had my eyes tested that I realised I was wrong! My right eye was slightly worse my left... and in the hearing tests my left ear outshone the right with slightly higher readings in the low-mid frequencies.

But several links including this one, in Ballenger's Otorhinolaryngology Head and Neck Surgery, advocates implanting the 'better ear' over the weaker counterpart on the grounds that the dominant ear with more residual hearing exhibits a better nerve reaction with a 'possible' higher success rate for CIs.

And nearly 95% of the people I'm meeting with a CI are implanted on their right not the left! Eeek! Am I making the wrong decision here?

Then I found an opposing school of thought that poohs this idea that a CI works better in one ear over the other. Howard Francis MD reported in the 'Ear and Hearing' Journal August 2005(yes... there IS a monthly journal that is published specialises in Hearing and Ears!!!) that the brains ability to distinguished electronic signals sounds does not matter as to which ear is implanted plus preserving the 'better ear'

"There is growing evidence that the amount of hearing in an ear prior to
surgery is unrelated to a patient's ability to interpret speech using an
implant, says Howard W. Francis, M.D., lead author of the study and an
associate professor of otolaryngology-head and neck surgery. Therefore, the
better-hearing ear could be saved for the continued use of a hearing aid or
future technology to complement a cochlear implant, Francis says."

Small reassurance there! All scientific reasoning aside there's several minor issues that factor in my decision to pick my left ear:

• I drive a lot, which I love, but I cannot have a conversation with someone in the car unless I'm looking at them. My children often get frustrated with my inability to communicate with them. We drive on the right hand side, so having a CI on my left would optimise hearing... but will it be the opposite if I am a passenger? Guess I'll just have to position myself behind the driver!

• I sleep on my right side, there's a strobe house alarm/fire warning alerting light in my bedroom and I have always slept 'facing' this light (the CI will be switched off and removed at night) This probably won't matter in the long run, but in the early days Post-implant a good night's sleep vital to me and sleeping on the scar will be difficult. I've a fear that if I sleep on my right the light won't wake me if I have my back to it... I don't see myself changing this habit unless the position of the light gets changed... no matter how hot the guy sharing my bed is!

• In my work place my desk is to the far left of the room, with all the bustle/chatter on the right. I already find this bustle/chatter a distraction, a CI on the right would be a killer to my concentration!

• And there's the possibility of a second implant (or better) in the future... it would make more sense to start with the left then move on to the right... I'll worry about the strobe light if and when this happens!

Hmmm. Yes, I'll take the CI on my left ear... pretty please!

Decisions! Decisions!

"As a fair warning, its going to be an emotional process so any ranting and
raving isn't intended to milk for sympathy but just more of an outlet. So
apologies in advance if I sound like an emotional wreck ;)"

from: Nikki in Perth http://ci-borg.blogspot.com/2005/11/how-it-will-work.html

Nikki has worded it better than I! I've a lot to think/do before I have the Implant... its starting to keep me awake! I'm getting emotionally over-stressed about everything!

I have to make a 'realistic' list of sounds I hope to hear after the CI. This helps with the AR work, gives goals to work towards, etc. But how do you know what sounds you want to 'hear' if you have no idea what the sounds are?!

I have to decide if I want a CI in the right ear or the left? The team have left it to me to choose. I'm favouring the weakest ear (left) for obvious reasons, but there is this school of thought that its better to use the 'stronger' ear.

Which implant do I choose: USA's Advance Bionics 'Harmony' or the Australian Cochlear 'Freedom'?

Then there's the morbid stuff to sort out like getting my finances in order, finalising my will (very important!) and leaving special ensuring everything is in place in the event of my demise. I know there's only .1% of that happening during my CI but the worry is still there... as a single mum to two children age 4 and 11, I have to be prepared for EVERY possibility. That is one of my biggest fears: dying before my children have grown.

Waking up with bad dreams about the latter isn't helping me either! The lack of sleep and the distraction is affecting my work too...

AAARRRRRRHHHH!!!! Decisions! Decisions!