deafblind

Why I demand professionals act professionally


As so often happens, cross-pollination of ideas occurs between Facebook, Blogspot, WordPress, Readit, and many other sites.

I’ve been feeling as if this blog is full of nothing but complaints (at times) and then something enlivens me  to write yet again.

A person on another site, in a galaxy far, far away, suggested seeing the humor in being mistreated by medical personnel who can’t remember the person they’re talking to is extremely Hard of Hearing (deaf). I mean, aren’t they the dumb sort of person who talks louder when the person is a foreign language speaker as if that would help?

The humor in it? REALLY?!!!

Is it funny that medical professionals are too unprofessional to consider the needs of the patients they are serving?  Yanno, my insurance and my co-pay are what support the doctors and nurses and staff at the clinics. THEY work for ME. Would it be funny if I just didn’t pay them? Or did things that made it impossible for them to work with me? Like not show up and not pay for a missed appointment?

Lets put it in another perspective:  A man goes into an orthopedists office and can’t walk since his lower leg has been broken. He’s dragging himself in with his fingers. Does the nurse:

A. Open the hallway door and suggest the man drag himself down the hall on his hands, squirming like a snake?

B. Provide the man with a wheelchair?

If you picked A and are in a medical program of some type, please drop out now. Yeah, I know someone hurt that badly today would go to an ER, but the point is the same. Would you ignore the needs of someone who needed help?  We, the patients of the world, neither want or need anyone without common sense and compassion in any medical capacity. There are others far better suited to serve individuals with disabilities – which is all of us at one time or another.

I’ve had people ask me how I can be so incredibly entitled as to demand being treated like a human being. Why can’t I understand this is just a human foible? Doesn’t it just show how humorously inadequate people are that they can’t remember I’m HoH?

The difference between friends/acquaintances and professionals:

I have long-time friends who can’t remember I need them to walk to the right of me and that I will deal with (with some requisite eye rolling) because they are not my medical providers. I am not paying them to be there for me.  However, as soon as someone is working with me/for me in a professional capacity all bets are off. I will remind people a few times, after that, their inability to remember (especially after I tell the receptionist to remind them I’m still deaf) is beyond belief.

I’ve been a social worker and a lawyer and I d**m well never forgot a client had a specific problem. Why? Because I pay attention! Because it is critically important to the service I am to provide.

Over the past few years I’ve gotten to the point I’ve been known to stand stock still at a doctor’s office and refuse to follow someone who is talking away from me seconds after I’ve just told them to face me when they talk to me. I will sit near the door but refuse to respond to someone who refuses to speak louder than a whisper. Am I supposed to guess if someone is calling me or someone else?

I am a human being and I have a right to be accommodated for my specific needs. It isn’t difficult.  I’ve had volunteers at hospitals take note of what I need and walk up and gently touch me on the hand to let me know I need to go thither or yon.

I have friends or acquaintances who are hard of hearing, deaf, blind, or deaf/blind or who are orthopedically incapable of certain things, and I expect all of them to be treated with dignity and respect. I expect the mentally challenged and the mentally ill to be similarly treated with dignity and respect.

Just as no one should be forced to crawl down a hall, dragging a broken limb behind them, so should I not have to beg to be allowed to have adequate communication with professionals who are working for me.  They are not paying me to be there. I am paying them for their services. I don’t ask them to use ASL with me (though it would be lovely) but do require them to treat me with the dignity I deserve and I’ll return the favor.

I’ll say this for my doctor – he knows I can’t hear. His staff knows I’ve got hearing issues. I LOVE my doctor and his staff. My doctor treats body, mind, and spirit and it shows.

 

 

Privilege


There is a link to a blog going around on Facebook called Hearing Privilege. It is about a year old, but still worth the read.

Probably the most salient point from it is:  Hearing privilege can be best explained quickly by saying it’s similar to the concept of white privilege. In a nutshell, white privilege is “a way of conceptualizing racial inequalities that focuses as much on the advantages that white people accrue from society as on the disadvantages that people of color experience.” (Wikipedia) It’s different than racism and prejudice; racism and prejudice are essentially when a dominant group actively seeks to oppress or suppress other racial groups for its own advantage. It is a privileged position; the possession of an advantage white persons enjoy over non-white persons.

It should be noted, though, that privilege comes in lots of shapes and sizes.  It is not something just the deaf experience.

It is pretty much an “I’m normal, you’re not” sort of thing.  The DeafBlind find themselves at a disadvantage with the deaf, the blind, and the fully hearing and fully sighted.  The blind experience sighted privilege.  Paraplegics experience able-bodied privilege, as do quadriplegics. People with intellectual disabilities, people with cerebral palsy who appear to have intellectual disabilities, and so on and so forth.

This is something to simply think about. If you are with a deaf person, do you answer for them without being asked to do so? It’s certainly easy enough to fall into that trap.

It is important to remember that everyone wants to be treated like a competent person.  Are we inclusive in our dealings with others?  You might be surprised.  Watch and see what you do.  Do you ever finish a sentence for someone?  Exclude someone from a conversation? Make a choice that is not yours to make?

 

Job hunting for the HoH


Since practicing law isn’t something I’m going to be doing much of for a while (except for pro-bono), and since I’ve lost my base of operations for my part-time legally blind/deaf clients, and since I can now think straight (or as straight as I ever did) and drive (wooo hoo) I thought I’d look for a PT job for the summer.  Something simple.  Easy.  Flexible.  Giving me time for physical therapy, child care, and rest – since I tend to get busy one day and then train wreck for at least a day afterwards.

You know, something simple, easy, requiring minimal hearing skills and no lifting or carrying.  Uh-huh.  I’ve been looking at PT Senior Citizen focused jobs and so far my best fit is a Friendly’s Restaurant Greeter.  There are jobs at the local Dunkin Donuts, but apparently there’s lifting involved, and actually hearing people make an order.  I’ve pondered the headset and my hearing aid.

I have written to DBCAN and told them I’m no longer in the area I used to serve.  Perhaps I can pick a couple of clients up out in this area.  Maybe.   Not like there’s a thick concentration of folks in this area since the “big city” is Leominster.

I’m also trying to volunteer at a battered women’s alliance, but so far I have not gotten a response.  Sort of miserable when you can’t give your services away.  Not the first time that’s happened, either.

I know that this summer I’ll have the little ones on Mondays and Wednesdays as well as alternate Fridays, so that will keep me off the streets and out of trouble.  Tuesdays, Thursdays, alternate Fridays, Saturdays and Sundays are pretty much my own – most of the time – time for plans, for PT, for exercise, for finding a place to live – all those fun things.

In the meantime, the check is in the mail (as soon as the bank gets around to sending it) to get Deaf Justice up and running.  I have to make contacts with HEARD and figure out who to contact at some law schools – and then I need to talk to the fund raiser AFTER she gets out of rehab for that miserably broken leg.  I was just about at lift-off there before my life made a left turn and crashed into splinters at the bottom of a flight of stairs.

Life!  It’s what happens when we are making plans.

 

Restaurants with blaring music


Someone please explain to me the trend in restaurants that play music so loud that I am swamped by the sound. I have no hearing on one side and significant hearing loss on the other side.  I complained and took my hearing aid out.  Even when it is “turned down” I feel as if I need closed captioning to understand waitstaff.  I can only imagine that in a few years the servers are going to be going, “Eh? What was that you said?  Could you repeat that please?”  Or maybe we’ll all be using American Sign Language by then.  Because we’ll all be DEAF!

What happened to soft music?  Even a juke box is less annoying than piping in satellite radio stations at full blast.  Do you have any idea how annoying FUN’s “Some Nights” is at 100db?  And I like that song, just not screaming through overhead speakers like bombers taking straffing runs.  Or Heart’s “What About Love crashing through the air like a bomb exploding rather than a song. The only one there who wasn’t bothered was the totally deaf/blind person.  I’m surprised she didn’t feel the throbbing of the speakers.

I wish there were a jamming device I could use on the incredible sound.  I really do.  I am going to load a DB meter on the iPhone and start becoming the Sound Harpy!

A breaking point


I now have a glimmer of why there is road rage.  I also got a better feeling for why an ASL interpreter of mine took on an abusive woman over me.

Today I was looking for a parking spot in a very busy parking lot so I could take a deaf-blind consumer food shopping. I wasn’t paying attention to other cars in particular except to note they were there – when suddenly a woman in a car facing mine rolled down her window, stuck her head out, and started screaming at me. I was totally baffled as her face screwed up with rage and she started giving me the Massachusetts “good morning and how are you today” sign – the middle finger of doom. For good measure she swerved around a car while hitting the gas and rocketing down the row like a fighter pilot. The last I “heard” was something about my taking her parking space.

I had no freaking idea what she was talking about – nor what parking space was coming open – and it took me another few minutes to find an open parking spot several rows away. I just patiently watched for an open space – works every time.

During those few minutes I came to a minor boiling point of my own. What if she’d hit my car? What about my passenger? What kind of society do we have where someone goes violently bonkers over a parking spot? Welcome to Massachusetts. This is behavior I’ve come to expect since moving here in 1996.

In the store I ran across this woman several times. What I wanted to do was walk up and confront her.I wanted to ask her if she knew there are people as angry and blaming as she is who are armed. What would she have done if someone had rolled down a window and shot her? Or gotten out of the car and attacked her? Instead, I gave her the patented look developed by mothers who have had enough from their kids. I call it “The Look.” Every time she saw me she jerked her head away and scuttled off like vermin avoiding the light. How stupid are people to think that after acting like idiots they won’t see the person in the store?

Most of the time I ignore people like her as a waste of human skin. Instead, I seethed for a time. Seething does no good, though, so this is a case of waiting for karma to kick in. In that light, enjoy a little of Jaron and the Long Road – Pray for You – at least it gives a bit of comic relief. 🙂

International Symposium on Criminal Justice and the Deaf.


SAVE THE DATE: MARCH 27TH, 2013

INTERNATIONAL SYMPOSIUM AT BRIDGEWATER STATE UNIVERSITY ON DEAFNESS, MENTAL ILLNESS AND THE CRIMINAL JUSTICE SYSTEM WITH SPECIAL GUEST SPEAKER DR. BRENDAN MONTEIRO, M.D.

Dr. Brendan T. Monteiro has worked as a Consultant Psychiatrist in the field of mental health and deafness, since 1987. He has a special interest in forensic aspects of mental health and deafness and has developed and medically directed specialist forensic Services for Deaf People in the UK since 2001, being specifically responsible for setting up two different Forensic Services for Deaf Mentally Disordered Offenders in 2001 and 2006. Dr. Monteiro is currently the Medical Director at St George Healthcare Group providing Forensic Services for Deaf people and for hearing people with an Acquired Brain Injury. He has also been instrumental in developing services for people in the Autistic Spectrum.

Dr. Monteiro is a past Council Member of the British Society of Mental Health and Deafness (BSMHD) and the European of Society of Mental Health and Deafness (ESMHD).

Dr. Monteiro was co-chair of the 1st World Congress on Mental Health and Deafness at Gallaudet University, Washington, USA, where he was presented with a “Pioneering Award” with a citation; “Whose Ground Breaking work in the Advancement of Mental Health practice in the Deaf Community has paved the way for all who come after”.

Other scheduled speakers include: Dr. Aviva Twersky Glasner, Marsha Graham, Esq., Dr. Jennifer Hartsfield and Dr. Alan Comedy who will be speaking on understanding diversity.
*A continental breakfast and lunch will be provided.

More details will be available shortly, but please save the date and we hope to see you!
The symposium is hosted by Dr. Aviva Twersky Glasner, Ph.D. of the Criminal Justice Department at University and made possible by the generosity and support of the following: The Office of Academic Affairs of Bridgewater State University (Provost Howard London and Dean Paula Krebs); Dr. Karen Fein, Ph.D. and Dr. Pamela Russell and the Advisory Board of the Center for Advancement of Research and Scholarship (CARS) at Bridgewater State University; Marsha Graham, Esq.; The Commonwealth of MA Commission for the Deaf and Hard of Hearing; HEARD (helping to educate and advance research about deaf and hard of hearing) and The Learning Center for the Deaf in Framingham, MA.

Here you go, world. If you want to attend, please contact:

Dr. Aviva Twersky Glasner, Ph.D.
Assistant Professor Department of Criminal Justice
Bridgewater State University
Bridgewater, MA 02325
508-531-2016

Space is filling up, so don’t hesitate. There will be Interpreter services provided for the ASL using Deaf. If you need accommodations and wish to attend, please notify Dr. Glasner ASAP as time is getting very short to make arrangements.

Pushing the limits of experience


An individual of my acquaintance who happens to be legally deaf and legally blind has been teaching me about limitations and how to push the envelope.

One day when we were at a large box store with an electric shopping cart this person hopped in
one and decided that day was the day to see if it could be done. I found myself wanting to give unsolicited advise about how bad an idea this was. Instead, I bit my tongue, developed a few
more white hairs and reminded myself – “Friend, not parent.” In the end, only an aisle display met up with the back of the cart, and I didn’t get a nudge until the check out line got crowded. Most of the problems were in my own mind and of my own making (or dread).

Sometimes when we see someone with a limitation we figure there is no ability to expand a boundary.

But what if we are the ones who are wrong? Are we the ones who are disabled by an inability to see beyond perceived limitations? When there is a situation which is low-risk, why not step back and allow for experience and experimentation? There’s always another bottle of hair dye, after all – and perhaps a bit of deep conditioning and split end reduction.

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?

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.

 

Research


It is actually not long until March.  If I am to present a 20 minute discussion on Substance abuse, the Deaf and it’s impact on arrests and prison time I must get to it.  The research so far is older and sort of disheartening. If you have information for me, belly up to the bar, boys and girls.