To be, or not to be

26 06 2010

To be, or not to be: that is the question:
Whether ’tis nobler in the mind to suffer
The slings and arrows of outrageous fortune,
Or to take arms against a sea of troubles,
And by opposing end them? To die: to sleep;
No more; and by a sleep to say we end
The heart-ache and the thousand natural shocks
That flesh is heir to, ’tis a consummation
Devoutly to be wish’d. To die, to sleep;
To sleep: perchance to dream: ay, there’s the rub;
For in that sleep of Deaf what dreams may come
When we have shuffled off this mortal coil,
Must give us pause: there’s the respect
That makes calamity of so long life;
For who would bear the whips and scorns of time,
The oppressor’s wrong, the proud man’s contumely,
The pangs of despised love, the law’s delay,
The insolence of office and the spurns
That patient merit of the unworthy takes,
When he himself might his quietus make
With a bare bodkin? who would fardels bear,
To grunt and sweat under a weary life,
But that the dread of something after Deaf,
The undiscover’d country from whose bourn
No traveller returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all;
And thus the native hue of resolution
Is sicklied o’er with the pale cast of thought,
And enterprises of great pith and moment
With this regard their currents turn awry,
And lose the name of action.–Soft you now!

Dissatisfied with the torments of living life in a hearing world and fearing complete deafness, each person discovers deafness for themselves, as deafness has historically been a one-way ticket to a living death. But this is changing.

A video was posted on YouTube of a baby’s cochlear implant being switched on, and his  reaction to hearing for the first time.

Some watchers have posted comments which are ignorant of the real facts. There are a lot of negative comments from the deaf community about cochlear implants. This is down to ignorance of how a cochlear implant works and what it can and cannot do. It’s important to find the right information on the internet, as there is so much misinformation out there. Sign language interpreters tell me all they ever hear are negative comments from the deaf community, so they are shocked when they come across someone who loves their cochlear implant. Originally, I didn’t want a cochlear implant, because I thought the technology wasn’t good enough. I have been proved wrong, and I’m very glad. In my research, I discovered how far cochlear implants have come along in the last 20 years. They are not perfect, but a cochlear implant is a hell of a lot better than the other options currently available – stone deafness and sign language …. or hearing aids / social stigma / struggling / stress / exhaustion / anger / depression etc etc.

I grew up in a social vacuum as I couldn’t hear anyone else speak and really struggled with a one-to-one conversation, it was so tiring and I had to guess so much of what was said. My parents wanted me to get a good education with communication support and I got that, but they didn’t consider the social side of being deaf. I became an expert in the Deaf Nod. As my hearing got worse, I became more exhausted and loved meeting friends who could sign, as this was a much easier way to communicate. But I became more cut off from the hearing world. I needed communication support at work, in my social life, in anything I did. Often, there were things I wanted to do or events I wanted to attend – but I couldn’t, because there was no interpreter.

I believe in total communication for deaf people, but often we aren’t given the opportunity to learn both sign language and lipreading. My family didn’t believe in learning sign language so I missed out on my deaf identity and culture. That cultural group will never accept me as ‘Deaf’ because I don’t sign fluently. I’m deaf but I’m not really Deaf. I will never be a hearing person but I am usually treated as one.  I didn’t really fit in anywhere. I was sooooo sick of making do. I was sick of not totally understanding sign language. I was sick of not totally understanding speech. I was sick of being deaf. I was sick of being me. In the end I had to do something so I could be myself again. It was really up to me to empower myself, to change the direction of my life. I was slipping into a completely silent world and I wanted more than this.  Much more!

And boy, did I get it. With bells on.

I’m still learning to hear, I’m still a baby in hearing terms, however I was convinced, just THREE DAYS after switch-on, that I had done the right thing, for I could hear more than I had ever been able to. And there is more hearing yet to come. Two months on from switch-on, music sounded fabulous, and I wanted a second implant. Just three months after switch-on, it feels natural to have all this sound, even if I can’t understand it all. I can’t wait to hear more new sounds and connect to the world more fully. I can’t wait to be me again. Already, I am changing into a different person (and hoping my friends are liking it!).

Last week my surgeon asked me if I was happy with my cochlear implant and I started to cry. I was so happy, grateful, and thankful I don’t have to be the odd one out and live in that damn void any more. So I think people should be more open to the idea of cochlear implants and understand how they can be life changing for people like me.

One friend has been wearing her cochlear implants for 8 years, and here is her reaction to the comments left on the video above.

I love love love my cochlear implants.  They are a blessing and a joy.  I wake up every morning and put my “ears” on.  There is never a day I am not grateful for them.
After 31 years of living in dead silence (no hearing aids) I got my cochlear implant in 2002.  Two weeks after activation I could talk on the phone again.   I am now bilateral and the technology keeps getting better and better.
I am in clinical trials in California, and the next generation cochlear implant upgrades for my cochlear implant company are mind boggling!!   Music is stunning with amazing harmonics and depth.  I had normal hearing at one time, I know what it’s supposed to sound like.
I have been reading some of the replies and shaking my head.   I have lived in silence.  I hated the limitations it put on my life.  Maybe only a person who had hearing in the past knows what they are missing.  I knew what I was missing.   There was a big deep void.
I can sign…not fluently, but I took sign language in college for 2 years.   I know what it’s like to live in a deaf world with deaf friends.  I had less hearing than my “Deaf” friends.

There is nothing wrong with Deaf Culture.  I have a lot of friends who were raised in it.  Some of them now have cochlear implants.  They still sign.  They are doing very well with their cochlear implants, even those implanted in their 40’s and born deaf.   Sign language will always be their first language, but the language of music is universal and they are loving it!

If they had received their cochlear implants as children, like the baby in this video, their cochlear implant would have given them the chance to develop language on par with their hearing peers.  I have a friend who elected to implant his son at age 2.  The boy is now 16 and speaks 3 languages fluently.   He has normal speech.   He is still slightly hearing impaired with his cochlear implant, but very very slightly.

I really believe all the “flack” about cochlear implants is mostly due to misinformation and lack of knowledge about what a cochlear implant can really do, why it’s important to have it done early for language development, and what a cochlear implant can and can’t do.
My household includes another cochlear implant user who was born with a profound hearing loss.  He grew up doing all the things that kids with hearing loss grew up with before cochlear implants, those big body hearing aids, all the speech therapy and everything.   He wishes he had been able to have a cochlear implant when he was a kid.  He missed out on a lot.
There is no brain surgery in getting a cochlear implant.  It’s EAR surgery.  Yes, you can swim and wash your hair.  Wearing a cochlear implant is no different than wearing a hearing aid.  But it works better than any hearing aid you have ever worn.
Should children continue to sign with a cochlear implant …sure, why not?  There is nothing wrong with that.  I think it’s a good idea.  Once you take off the BTE’s the child is back into a silent world.   There are many ways to raise a hearing impaired child.  It’s not “my way or the highway”!   It’s a joint effort between the parents and the schools.
A cochlear implant is a tool.  It’s not a magic wand that gives hearing.  The parents that elect for their child to have a cochlear implant have a world of hard work in front of them.   There is a lot of rehabbing to do.   It’s a big responsibility.   It’s not for sissies.
Why is it that deaf children whose parents elect not to let them have a cochlear implant, let them have hearing aids?   Why do you want a child to have a hearing aid?   So they can hear of course!
A cochlear implant is for a person that hearing aids don’t work for any longer or at all.  It’s another way to have access to hearing.   It’s the only way for a lot of people.  It was the only way for me.
If a child or adult can still benefit from hearing aids, they won’t qualify for a cochlear implant.  It’s that simple.  Only specially qualified audiologists and surgeons can evaluate a person.  There are specific tests that need to be done. The hearing aid dispenser across town is not the person to talk to.  Too many people are being sold expensive hearing aids that no longer help them.
If a blind man had the choice of having a white cane and being blind or having some surgery that would help him see, what do you think he should do?   Even if the restored vision was not 100%, maybe it was 80%, I think just about everyone would agree it was a good thing!
Being able to hear is a good thing too!  It’s not evil or unnatural.  It’s a choice we have today.
I am typing this listening to Luther Vandross.   It sounds amazing.   I spent 31 years in silence…there is nobody in this solar system that can tell me a cochlear implant is less than a miracle.

I agree, the cochlear implant is a miracle. I still use my sign language when I need to. I marvel at being able to hear the beautiful birds sing to me every day, the clocks tick the time away, the soft rain, the thunder of the sea, people talking in the room next door, people walking past, being able to understand some speech. Luther Vandross sounds amazing to me too. After 40 years of profound deafness, my new ear is truly a blessing. I am so glad to have a second chance at life and for the baby in the video to have HIS chance of a rich life – before he’s even started. Lucky boy!

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16 responses

26 06 2010
Alison

I have been reading your posts on your journey, and I have refrained from commenting as it is your personal journey / your choice. If it makes you happy, then that’s for you to embrace.

And yes, it is difficult to watch sometimes, especially when hearing people latch onto your comments re hearing. Because those stereotypes remain later, and the rest of us have to pick up the pieces. Believe it or not, it becomes bigger than you and it starts to get oppressive. It might be a bit like Michael Jackson changing his skin colour, to look white. Like it or not, he did send out a wider message. I regress.

But this comment: “as deafness has historically been a one-way ticket to a living death. But this is changing.”

I take offence at it, and it immediately makes me lose respect. Those people who do not opt to have a CI are certainly not on a “one-way ticket to a living death”. (You imply it is only changing only because of a CI).

I (singular, because I can only speak for myself) certainly do not live a “living death” and I love life, thank you! I am not definied by what goes in my ear or not, and at peace with who I am. Yet you’ve devalued me, and people like me. Apparently I need a coffin!

No-one would say Black people experience discrimination, therefore they live a “living death”. Your comments devalue life, and gets into the territory of what sorts of people should be allowed to exist.

Embrace your new experience, it is your choice. But do NOT start putting other people down. You complain about Deaf people having a lot to learn about CIs (a generalisation). It could also be said that most deaf people have a lot to learn about Deafhood, living in a hearing norms we don’t always see what’s going on.

😦

26 06 2010
Angela

You are right it is a choice! And it is a choice of whether or not to get cochlear implants that any parent makes for their child that is not taken lightly.

As a mom of 5, I had to make that difficult choice. And I decided to have at that time, my 21 month old receive the bilateral CIs.

I believe I made the right choice. But it was my choice to make! For others out there who disagree, well, that is your right. But don’t criticize those who choose CIs. We live in a “hearing culture” and I chose that for our son. I am damn glad that I did!

26 06 2010
Dan Schwartz

Angela, not allowing a deaf child to hear is akin to not allowing him to be taught to read.

26 06 2010
Alison

@Angela don’t assume because someone who doesn’t have a CI doesn’t live within a “hearing culture” (your prejudice of deaf people is coming through). All of my family are hearing (and *we* manage to communicate well, we because communication is two way). I work in a hearing environment. I also hold professional qualifications, plus more than one degree (from reowned institutions). I’ve managed hearing people.

That is not the point. Do not assume that “Deaf culture” is inferior. You state that you live in a hearing culture and chose that for your son, fine.

But (a) you must too adapt, it is not for a deaf child/person to do all the work, to meet the needs of lazy hearing people. The “needs of hearing people”, because hearing people do not own this world by default. If anyone is lazy around me, I let them know and they change – which is how I am able to jump between cultures easily; and (b) assuming hearingness is the be all and end all, and there is no “Deaf gain”. To ignore the latter, you already close a huge window on the world.

My gripe with the post above, wasn’t to do with an adult making a choice. It was the fact that Deaf people who don’t have CIs have been labelled the “living dead”. A subjective statement, and something I very much disagree with. Don’t label me with such negative language, please. Dead, I am most certainly not.

26 06 2010
MM

Alison and ‘GRUMPY’ are known haters of CI’s they published anti-blogs for years on end, never resisting a dig at anyone who saw a CI as positive, to suggest pro-CI people are ‘unfair’ takes the biscuit really. They gave up when we all stopped listening to them. What goes around comes around, they cannot resist having a go if someone sees value in it, and increasingly most are, even the British Deaf Association has bitten the bullet and runs support networks for CI wearing children. Far outnumbering those who see deafness is some rosy glow, these are deaf people regardless of implant and that is recognised.

It is a ‘deaf sentence’ to many who acquire it, that is never going to change. Research by anyone would suggest deafness is never seen as a positive thing. That’s the physical aspect. Only those never knowing any hearing would not see that, as such no authority in choices. Many with CI’s have been both, hearing and deaf, they know of even a single decibel.

26 06 2010
LeapOfFaith

This post reminds me of Braveheart.

Only that the Scots who are acquired deaf here and confined to the shackles of ‘deaf’ time see it as their human right to fight for freedom.

That freedom is to hear again and reconnect to mother earth and her beating heart.

27 06 2010
michele

For me personally, when I was deaf my world seemed black and white – and I felt so separated from the everyday things, the small and the big things, not to to forget the frustration. Now that I have my CI my world is happening in colour. It is the only way to describe my life. Having my CI means I now have something to compare it to, the ‘before’ and ‘after’ and I am grateful for that.

27 06 2010
LeapOfFaith

I really like that Michele..’With my CI, my world is in colour’.

That’s really cool, thank you.

28 06 2010
Michele

Colour my world!! Tis wonderful leapoffaith!
I think Tinas blog reflects accurately what many of us with hearing loss have felt. I had also written that it felt like a living death in my diary. Sometimes when I read my old entries in my personal diary I cry. I can’t believe I ever felt so desolate.

8 07 2010
Fadi

It is a must read for those who want to understand those people who in the middle of the two worlds – deaf and hearing. And I am one of them.

If it is alright with the person who posted this blog, I would like to share this on my FB.

And I don’t think that the ‘living dead’ was a reference to the deaf person in absolute sense; it refers to those who r in the middle of those two worlds.

Thanks for sharing this with us as you are blessed with excellent writing skills and explantions.

Fadi

10 07 2010
Andy

I see the usual spoilers have busy again. Please note that Alison and her misguided friends are in NO WAY representative of the deaf community.
The truth of it is the “deaf community” is heading for CI surgery just as fast as their little legs will carry them. I personally know half a dozen Deaf people who have had or will have CI surgery THIS YEAR! There are hundreds more.
No matter what silly little girls like Alison think the “deaf community” will carry on doing what they think is best for them. At the moment the benefits of a CI far, far outweigh the disadvantages and just leave objectors looking stupid.

Mine is in September by the way.

And Alison…. STOP CAUSING TROUBLE FOR DEAF PEOPLE!

11 07 2010
Deb

Interesting reading! I am the friend who contributed in part of Tina’s note. I have had my left CI for 8 years and my right for 2 years and I also had a very early experimental CI on the right side in 1985. I have seen the technology evolve over time.

I was also president of the local “deaf club” in the California desert where I used to live. I have been around the block in the “Deaf community”.

Being well educated (and bragging about it) doesn’t replace being very “smart” or open minded. People can have all the degrees in the world and still be stubborn and pigheaded about things.

Like Andy said, people in the Deaf communities are getting CI’s for themselves as fast as they can. Why deny yourselves sound when you don’t have to? It’s good that intelligent deaf folk are seeing what kind of benefit a CI might give them and are weighing the pros and cons of a CI for themselves.

One time, when I met a man that had a hearing loss history almost a duplicate of mine, I felt he was making a huge mistake to turn down the idea of a CI. His reason was vanity. I lost many night of sleep sick at heart for that fellow…because I know what he gave up.

Congrats on your CI surgery in September Andy! Hope you have browsed through all of Tina’s blog to learn about CI’s, she had done some tremendous research!

Deb

13 07 2010
Kyle

Tina and Alison are both friends of mine. I do think Alison has a very valid point. I can see how Tina comes to her conclusion… but it doesn’t necessarily follow that someone else require improvements to their hearing… one size does not fit all.

As someone who is getting his CI today, and I don’t think my life has been a waste, yet it could be better (a new job would be nice!) and improved hearing, but that’s due to the way I live my life, and I wouldn’t want it any other way.

Someone else said do I regret not getting CI earlier, and I say no, I have no regrets, everything forms part of my experience and personality as well as judgments (I’m a pretty judgmental bloke in my mind) but I don’t think those who could have it and do not, needs to have it. I have not been in their shoes.

Cheers,
Kyle

15 07 2010
Patty

I really related to and enjoyed your description of Dubai. It’s hard to fathom why some people can’t grasp what HH or deafness is, isn’t it. I’ve been hard of hearing all my life, and was recently implanted in one ear so I’m just beginning the process of hearing more. I heard my young son ask me something from a great distance with only my CI on and that was truly amazing. I thought I could get used to this! I too feel caught in between worlds -am more in the hearing world as I learned sign language as an adult and would never be accepted into the deaf world. Have had both positive and negative experiences with Deaf Culture. I guess I can say the same for the hearing population as well. It is tiring to constantly educate so I’m just hoping as I get better with the CI I will be less tired and life will become easier so I can enjoy life more! Is that what we all want? As Michele said….CI adds color to our world and will make it easier I hope as well. I also really appreciate that there is so much support for us online, meetings, etc.

Patty

16 07 2010
Cochlear Implants, Music, Size Queens & Strap-Ons /  Radio666fm

[…] friend Alison brought the blog post To Be, Or Not To Be, and today [16th July 2010] on Facebook I discovered the following "Oh For Fuck’s […]

22 07 2010
Catherine Mellor

Lucky, lucky boy! So beautiful. So wonderful to know he won’t know the pain of being outside of it all!

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