Month: January 2013

Incoherence? Not so much.

I’ve been able to be in more contact with the Deaf community in the past few weeks.  Sometimes I just happen to bump into folks who are at a coffee shop or I meet them other places by accident or design.  Because of my greater exposure I’m getting better at receptive sign, but my expressive sign still lags.  (sigh)

One thing I have noted that is developing is that I am internalizing the structure of ASL.  Last week I ran into a situation where an individual who has some environmental hearing left and who has phenomenal lip reading and voicing skills got very upset (understandably so) and began ranting (as any normal person would) about the very troubling situation.  A hearing person commented that the Deaf person was “babbling” and “incoherent.”  My response was, “No, it makes perfect sense – in ASL.”  You see, the Deaf person was orally expostulating using internal ASL word processing.  It is like when someone from Italy gets upset and pretty soon you’ve got arm waving, some Italian, some English and maybe a couple other European languages thrown in for good measure.  The person doing the expostulating would make perfect sense to someone from that same environment, but not to me.

ASL is not now, nor will it ever be English. There is no direct translation – either word for word (that’s Signed Exact English) nor an entirely consistent thought translation.  Consider how difficult it is to agree on a translation from Hebrew to Greek to English for a Bible and the plethora of different versions on the market. Why?  Because there is no precise translation.  It is what the interpreters think people from 2,ooo years ago in a culture we never experienced and only think we understand said and meant.  Now  we have a living breathing culture (Deaf Culture) and yet hearing culture still doesn’t get it that some terms of art, let alone some hearing culture concepts, simply are unable to be translated accurately from English to ASL and back.

My background in cultural anthropology (a college major of mine) in combination with linguistics taught me that language is the repository of culture.  When a language dies the culture goes with it because the ability to understand the culture is tied up in the expressions used.  Here we have a language that is a living, breathing, evolving one coupled with a vital culture.  I’ve come to recognize that some concepts do not translate well.  Some of the most difficult are legalistic ones.  I suspect it is hell to do translations regarding technical medical jargon because it would require a Rochester type method – fingerspelling.  And if the person does not understand the term being used then one is faced with either building understanding from the ground up – which might take some time – or doing a workaround.

In some cases I find it is easier for all involved to simply say, “No.”shaking head and going into full negative body mode, “Never do. Finished.”  This comes from long exposure to working with many cultures, socio-economic groups, and language groups from New England to Alaska. Unless understanding of the why is required (and there’s time to spend hours in education mode) then No can be the best short-term solution.  I remember a cultural group where the children all had burns on their backs from having a heated metal spoon pressed into the flesh.  Of course, the parents and grandparents all had them too.  It was done not to torture, but to draw out a cold from the lungs – to preserve the health of the person. While everyone is running around screaming child abuse, no one sat down and said to the loving parents, We don’t do that here.  Here we use (insert over the counter medication).  It was clear to me that we needed to stop the conduct first and the why of it all was saved for a later date.  In addition to wanting to be good parents, these folks wanted to be good Americans – so they stopped using heated spoons and started using things like cough medicine.  Sometimes we over-think things.

My views on the criminal justice system and its interactions with the Deaf are growing every day.  The hearing don’t get it that the Deaf don’t entirely understand hearing culture – and the hearing don’t get it that they have no clue about Deaf culture. I am very aware that I’m only on the very periphery and I need far more exposure.  My culture is hearing because I never had Deaf culture exposure, but it doesn’t make my culture right – merely dominant. Hearing individuals usually don’t get it that Deaf individuals don’t necessarily understand English. The information provided by legal interpreters can only go so far and then words fail us all.  All that being said, if you took the average hearing person off the street and plonked them down in a legal setting they have only bits and pieces of TV shows to go from as to what is going on.  I’ve seen people get so upset they go in the bathroom and vomit before going into court – and they can hear just fine.

I wonder how often a Deaf person has been adjudged incompetent when the incompetent person was the therapist or doctor who could not understand ASL.  Gives me chills sometimes.

A Hard Week for the Deaf

In Burlington, NC a Deaf man was repeatedly stabbed by a gang-banger who mistook American Sign Language for gang signs.  The bonehead responsible has been charged with intent to kill as well as other crimes. (from the Crimesider)

In Denmark, deaf twin brothers committed suicide (assisted suicide, no less) because they were losing their vision and decided that their suffering was too great to bear. (Huffington Post)

Today I spent 5 hours with a Deaf-Blind consumer; a brilliant individual with a wonderfully quirky and

Helen Keller and President Eisenhower

unique outlook on life (don’t we all?) and we discussed the suicides.

We were both profoundly saddened that Denmark – while offering assisted suicide – apparently does not offer therapy to help individuals adjust to loss and go on with happy and productive lives after losing a sense.

Imagine if Helen Keller had decided life was simply too great a burden to bear. Imagine the loss to the world were that bright light to have extinguished herself.

It brings to mind the quote from the book Dune that is the Bene Gesserit Litany Against Fear

I must not fear.  Fear is the mind-killer.  Fear is the little-death that brings total obliteration.  I will face my fear. I will permit it to pass over me and through me.  And when it has gone past I will turn the inner eye to see its path.  Where fear has gone there will be nothing. Only I will remain.

I am actually all for assisted suicide if the person is suffering from a terminal illness, there is no hope, and there is great pain or debilitation which cannot be alleviated. These men did not have a terminal illness, they had an incurable disease process. My guess it that they had Usher’s syndrome and could have been fitted with Cochlear Implants and taught to hear as they were going blind.  They could have been given the gift of tactile sign, been taught braille, and given hope and support rather than a final exit.  All I can do is murmur an ancient Celtic blessing for the dead.  May the Nature Spirits guide them home; may the Honoured Dead welcome them among them; may the High Ones grant them rest, and rebirth in due time. As it was as it is, as it will be. There will be a returning for them.

So on the one hand, we have a Deaf man almost murdered by a knife-wielding imbecile in a street gang who is too stupid or drugged out – or both – to recognize the difference between the fourth most commonly spoken language in America and gang signs ~ and on the other hand we have two men with everything to live for who find living a life with a new limitation is too much to bear.

What are we teaching people around the world (not just here) regarding the differently abled among us?  That life without full sensory awareness is life without meaning and therefore life that should be ended?

And then there are other losses

Thanks to LouLou1330 on photobucket

2013 seems to be a bang-up year for losing things.  Like my mind.

Thanks to pjhatesyou on photobucket

I didn’t wear my hearing aid for a few days because my ear canal was raw (I’m allergic to the hearing aid plastics – all of them) and now I’ve lost it. My hearing aid. I lost the hearing aid.  Not my mind.  Well, maybe my mind as well.   I’m beside myself (see, I’m right over there, too) and searching the car, coat pockets, under the bed.  A replacement is almost $800 with insurance.  I can’t afford it.

I realized yesterday that my log-in to Federal District Court is on a piece of paper packed in a box that lives in the storeroom in the basement.  It was an accident that it was lost.  I “should” have put it in my phone notes.  I tried to reset things online and the computer kept rejecting me.  I remembered QTIP (quit taking things personally). Finally, after a few hours, I called and the help-desk clerk kindly double checked my BBO number.  They had the wrong bar card number.  Oops.  Which is why I kept getting an error message.  But they must have had it right at some time.  Right  So now I’m waiting for an email to get started again.  Hey maybe I get to file today.  So one more loss – the loss of the real number due to a data entry error.

I have a massive earache, can’t get in to see my doctor, can’t get my insurance accepted by the walk-in clinic that opened up  – so my loss is the hospital’s gain as I’ll go there for urgent care – else my ear drum will rupture again.  I’m actually fortunate I can feel this at all since I’ve lost most of the sensation on that side due to the head injury that created the hearing loss.

Oh, dear, I seem to have lost the time to be able to get all these things accomplished.  Please, email, come soon so I can file the motion. Waiting for the email. Really.  Waiting.  Losing time as I wait. Me? Impatient? No. Never. Not me. (cough, cough) Really, I am the embodiment of patience. WHERE THE H*LL IS THE EMAIL? Not that I’m gritting my teeth or anything. Perhaps I should call again?  Annoy the h*ll out of the help desk? Aieee! Now I have a motion AND and entry of appearance to file. Send me the freaking email, already!  And for your listening pleasure, the Jeopardy Theme.  

Loss and hearing loss

Recently I posted regarding a personal loss.  There are other types of life losses. When I was in DBCAN training to provide support services to the Deaf-Blind we discussed the loss of function and its impact on the lives of individuals.

Unless someone is born deaf, blind, or deaf-blind they are going to experience a loss.  I don’t remember

I love to sign (ASL)

Love 2 Sign

being fully hearing, so I have no particular loss cycle to go through regarding that, although sometimes I realize what I do not have and can find that very painful.

For my “hearie” friends, something to remember is that when folks around you lose hearing/vision/both that the first step in the grieving cycle is Denial – and it ain’t a river in Egypt.  It is why many folks with hearing loss attempt to hide it.  And the sad part is that by hiding it they may experience loss of brain function in that area of the brain and will experience actual brain matter density loss.  It makes HoH or deafies who don’t use ASL or other communications that stimulate that area of the Brochal region at greater risk for dementia – at least according to the studies I have read.

Although I can’t remember what it is like to be fully hearing and though I don’t really want to be that way (I cannot imagine the noise!) I also know that I’ve lost a lot of ability to hear over the years.  I too have gone through grieving/loss about my eroding hearing.  I remember once when my decedent former husband told me what falling snow sounded like  I found myself on the verge of tears.  Falling snow has a sound? He said it was a very soft hissing noise.

If I’d been deaf since birth I might not care or wonder.  Since I had some hearing – less now than ever – I do understand what a “hiss” is.  And I know that once gone, I never get it back.  I’m told I’m not a CI candidate – and in reality, CI does not make one a “hearie” – one is still HoH.

Loss comes in so many ways.  As we age we lose our youth, our parents,  our friends, and loved ones.  We lose pets, jobs, and time to make amends.  Some of us lose our speech, others vision, some lose both.  If you have a friend or loved one experiencing a sensory loss, you may wish to be supportive of them, encourage what help they can get.


She did a magnificent job

My eldest granddaughter was devastated when her Grandfather abandoned the family.  She was poleaxed (as was I) when he died so unexpectedly.  My beautiful, gentle, loving, compassionate granddaughter was never given the opportunity to tell her grandfather goodbye.  He died half a world away and she was denied so much as holding his hand or kissing his cheek.  It is the sort of loss which is irrecoverable.

What does one do with that sort of grief and pain?  When my mother died I went into the fields around the farm and screamed into the sky.  It was the day I gave up on “God” because “God” gave up on me.  We’ve never been on good terms since, and deity has been demoted to Higher Power.  Instead, I’ve the Tao, the Buddha, Celtic heritage spirituality, and the Higher Power of the 12 steps.

Life and times have changed. There are no fields to go to and scream out one’s agony.  Instead, we have the Internet.  She tweeted her farewell and blessings on the Grandfather she loved and lost, not once, but twice. Why does love have to come at so great a cost?

Life is so fleeting.  So fragile.  We often make such hideous blunders without meaning to.  We often harm innocents – both adults and children.  It is the children who suffer most, their spirits crushed, consumed by feelings they were to blame for the debacles created by the adults in their lives.  It is why abuse and neglect is generational – we get it from our parents, grandparents, or great-grandparents.  Hopefully, there are other family members to pick up the mantle of love and responsibility and help the innocents recover from profound loss.

“Fly High, Grandpa, Fly High.”

We are all flawed human beings – even my perfectly imperfect eldest granddaughter.  All I could do was tell her that her Grandfather loved her as much as he was able.  As an adopted child who never bonded with his adoptive parents or elder sibling, his ability to accept or express love was severely damaged.  So he showed his love  in the only way many men of his generation could – by buying things.  He already knew how kind and intelligent she was so he loved to hear the stories of her walking down the aisle at a restaurant, waving to everyone as if she were Miss America.  In his heart, he always knew she actually WAS Miss America.

Our eldest grandchild was his first chance to learn how to love a child.  He was amazed at how tiny she was, how perfect those little fingers and toes, how soft her white-blond curls.  He was terrified he’d damage her by touching her.  She was his chance to learn how to love – how to really reach beyond himself and his own terror of relationships – to reach inside his patched and tattered soul – and give something more than he’d ever given before.  He talked her through colic by distracting her.  He became a furby after hers broke, making Furby noises.

And our eldest granddaughter? As always, she did a magnificent job.

Let Memory Lighten Grief

I will be on a short hiatus on iPhonePhotoMaven and AnotherBoomerBlog.  Just long enough to screw my head on straight again.

In November of 2012 my former husband suffered a massive stroke while in South Africa. His SO ever so kindly did not inform me until well after the fact. In fact, she chose to remove him from supportive medical care. I had to involve the American Embassy. Subsequently, he suffered a heart attack and died. I do not know how competent he was at the time of his death. I pray he did not suffer. I fear that he was terrified and in pain.

I will never understand why he did what he did ~ ultimately, I don’t have to understand ~ that is between him and his Higher Power.

I do ask all of you who love or have loved someone, even if they are unloving towards you, even if you are angry, to remember that life is very, very short. I’ve lost so many people in my life – my beloved mother who died before my daughter was born, my Dad to extreme old age. I now have a clean sweep – there is no one I can look to in order to share early memories. I can’t even have a fight with them.

It’s like looking back at a minefield with bodies lying everywhere. It is like going through a war and realizing you are the last person standing – your squad is all gone. All the people you faced the world with are gone – like a puff of smoke. You find yourself on your knees trying to pick up pieces of people.

So look at your wife or husband or lover and realize what a great gift you have.  Even if they are being a jerk right now.  Because when they’re gone they are gone forever. Extinction: Forever – and there will never be any more.  Maybe some of you are happy an abuser is gone.  I hope you have someone else who was not an abuser to hold close and remember “when.”

Below are virtually the last words I said to my husband.  Consider them today and each and every day you see someone you love – or think you used to love – that brother or sister or parent you’re estranged from, that significant other you’d like to club, that adult child you’re frustrated with.

You might be surprised how everything else dies, but love never dies. And those who you think you’re so angry with are only people you’re angry with because down there is heap of hurt and loss and love.  If you didn’t love, you wouldn’t care at all, would you?

Welcome to 2013

Another year in the rearview mirror. This blog found its orientation, if not the final name.

Today at the gym I was listening to Brad Paisley’s “Welcome to the Future” and realized it really is the future now.

So instead of talking about being Hard of Hearing or the world of the Deaf I thought I’d share Brad’s look at the world.  We need joy and inspiration in 2013.  One of these days I hope I get the entire song signed and then, well, who knows, maybe I’ll put another version on the web.

For my Deaf and Hard of Hearing readers, here are the lyrics…