deaf

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.

 

 

Why bother asking?


I have been at the social security office twice in the past two weeks. When there I use a large computer touch screen display (must be fun for the blind!) to enter my information. It always asks me if I have one of a few disabilities. I always select Deaf or Hard of Hearing.

I’m wondering if this is not, as it says, for them to serve me better, but for statistical purposes. Why? Because no one there gets a notice that I am HoH. The person I’m working with has a lovely, soft, lightly accented voice that is at the very far edge of my ability to hear. She’s a wonderful person and she works hard. I appreciate her dedication to getting things done right the first time.  Thank heavens for hard-working government employees – and if you want to bash a government employee just don’t start because I’ll delete the post. I spent years working my butt off for the state of Idaho and Alaska.

Anyway, this lovely and efficient lady talks to her computer monitors, or at least I think she is. I don’t know if she is talking to herself or to me. I’ve finally decided that if she isn’t facing me she isn’t talking to me – and if she is, when I don’t answer she WILL turn around and face me.

I will say this, she starts talking to me and writes instructions at the same time – which is great, because I can barely hear her when she’s facing me.  I repeat that I am HoH. She apologizes and 5 minutes later we do it all over again.

At least I can hear the guy at the front desk as he has a good voice.

Why?  Why bother asking? Does anyone know the answer? You’d think that with Social Security working with so many retirees they’d be clued in on hearing loss.  I guess not.  It is not like I’m asking for a terp, but it would be nice if they’d talk just a bit louder, face me when they want to talk to me and make sure I understand by going over the information again.

I swear to Buddha I am going to get a T-shirt printed on the front:  DEAF  and on the back STILL DEAF!  Or maybe it should be I CAN’T HEAR YOU! and on the back I STILL CAN’T HEAR YOU!

Only one more trip – to drop off a document and (thank the gods) I am done. I hope. Please tell me I’m done!

Networking


The problem with being deaf or seriously hard of hearing (HoH) is that unless we are part of a larger Deaf community or involved with organizations for the hard of hearing we tend to be isolated souls.  It is not that we want to be, it is simply a fact that oral communication is generally limited for us. However, now and then we have a breakthrough.

There are blogs for the D/deaf and HoH. Blogs dealing with Meniere’s and blogs about CIs. There are groups on FaceBook (FB) that cater to the D/deaf and HoH in a variety of capacities. I’m in 3 such groups – one professional, one focusing on ASL and another that is more conversational.

Not long ago one of my blogging pals, Wendy of Picnic with Ants mentioned she no longer needed her relatively new hearing aids (HAs) because she now has bilateral CIs. Recently on FB another individual mentioned a need for replacment HAs that could not be met because of no longer being a part of the work force.

A contact with Wendy and a contact with the FB gal (who happens to have a blog on ASL on a different blogging site) and a connection was made – much to the delight of both parties. And I was more excited than both of them together. 🙂

I’ve previously returned older, serviceable digital HAs to my audio service provider who sends them on to be refurbished and donated to children who cannot afford them. That’s great. But what about adults who are not working and cannot afford them?

In general, insurance does not pay for HAs. And there’s the rub, because it is now known that untreated hearing loss leads to a loss of brain density which is related to dementia. Dementia is a huge problem in our elderly population today and is a drain on financial resources. If $6k in HAs every few years could prevent tens of thousands of dollars or hundreds of thousands of dollars in custodial care costs it appears to me to be the height of stupidity on the part of the medical insurance industry not to market hearing insurance aggressively. Keeping people functional would be an enormous cost savings. What is wrong with the bean counters that they are missing this? I’m not sure, but I’ve a niece in the health insurance business so I shall ask her about her thoughts on this.

Back to networking:  It appears the Lions Club accepts donated hearing aids to benefit men, women, and children who cannot afford them. It also appears that the Starkey Hearing Aid Company accepts donations, but I’m not sure how they are handed out. Hearing Loss of America has a financial assistance program. In Massachusetts the Massachusetts Commission for the Deaf and Hard of Hearing helps individuals get hearing aids, although funds are limited. Not every state has a commission for the Deaf and Hard of Hearing, but it might be wise to contact state government and see if your state has assistance.  Of course, for individuals in the workforce your state’s Vocational Rehabilitation office can assist in paying for hearing aids so long as they are related to employment.

It is important that deafies or HoH folk network so that HAs that are functional but live in dresser drawers (unless they are the backup HAs one should have) find their way to people who need them. Behind the Ear (BTE) is the only kind that can be easily recycled (a new ear mold will do it) although In the Ear (ITE) can be donated and the parts used to build another HA. My hearing loss is at such a level that an ITE won’t work for me anymore – I’m BTE from here on out now.

It is estimated that only 10% of people worldwide get the support they need to deal with hearing loss. We need to start engaging in some serious networking and rabble rousing to have HAs covered by all insurance.

Another Ear Infection Another Hospital Visit


I can only describe it as having “mumps of the ear.” What made it so bad is that I was medicating for post-surgical knee pain and it also covered the pain of an fulminating external ear infection.  By the time I realized I was in trouble I couldn’t get my HA in and my face was starting to puff up. Such fun!  And I was with the grandkids so had to wait until I was “off duty” (so to speak).  On the good side, the ER wasn’t busy at that time of night.

At least this time I could do my own voicing. I couldn’t hear worth beans, though, and I felt a little bit like I was acting Autistic doing my rocking in the chair with my hand over my ear. I guess we all get that way when the pain gets bad enough.

The doctor couldn’t get the scope in my ear far enough to see if I had an inner ear infection; partly because the ear canal sorta swelled shut, and partly because pulling the top of the earlobe up made me sorta try to duplicate the look of the poor soul pictured in “the scream.”

When the doctor saw me rocking from the sharp stabbing pain (I tried to ignore the burning, throbbing, and itching) I got a couple of Tylenol on board and the nurse did her best to get ear drop into the ear canal. More imitations of “the scream” from me.  Then came a prescription for stronger ear drops to fill when the pharmacies opened the next day, and another prescription for oral antibiotics too. Gonna kill this junk since this was my second late-night visit for an ear infection since December.  I think they’d rather we not keep meeting like this. 🙂

Since the ear drops I left with didn’t have much of an effect (I still had ear mumps the following morning) I filled the scripts the next day. I still have a tiny bit of swelling, but it no longer looks like I have ear mumps and today I was able to jam the newly cleaned HA in for awhile. Still some swelling in the canal and around the ear, but there is a definite improvement. I am sure the grandkids would disagree on that since I’m still doing a lot of deaf nodding when I realize that the only way I am going to understand is if they text me.

I’ve been told that if I get a CI I can avoid these infections since what causes them is my allergy to the silicone and plastics that fit in the ear canal. Unfortunately, I’m apparently not a candidate for a CI since I’m not going to offer up my one “good” ear and the “bad” ear is totaled.

I can’t remember having one ear infection before I started wearing a HA. Now it is nothing but trouble. Sometimes I wonder if it is worth it. If I lived in a Deaf community I doubt I’d bother with a HA except for rare occasions. Since I’m starting to lose sirens (unless they’re REALLY close) I’m not sure they even help much with emergencies on the road.  I just rubberneck all the time.

It’s been awhile


Yeah, I’ve been lagging in posting. Why? Probably because there have been few new challenges that have come my way regarding the hearing thing. Who wants to listen to a rehash of the old ones? Not to mention that I’ve been down with “the plague” – a severe cold exacerbating the asthma that gave me severe laryngitis and has now devolved into a long, drawn out bronchitis. All viral of course, so no treatment except to outlive it. (sniffle, hack, cough, sniffle)

I did end up at the ER with this version of the creeping crud. The consensus was I probably needed a chest x-ray to make sure I wasn’t getting pneumonia. So off I went. However, the laryngitis was so bad I could’t even whisper. This left me the option of writing or signing. I usually voice for myself. This time I thought, what the heck, ask for a terp so s/he can voice for me.

The hospital was WONDERFUL about it. Absolutely no problems there. Johnny on the spot. There were only three little problems.

1. The terp was contacted over a video system and the monitor was not exactly large. I could have used a telescope to get a better view.

2. The ER was very busy and I was not in a private area where one could hear oneself think – probably because someone with more severe problems was in there. Makes sense. Except for one other problem.

3. The interpreter could not hear the nurse. Even if the nurse was screaming into the designated sound area the terp was bewildered. It was an absolute avalanche of sound and everything hit the terp just like it did me.

However, I was able to sign to the terp and have her voice for me. The problem was that she couldn’t sign the nurse’s questions back to me because she couldn’t understand them. Eh? What was that you said? Huh?

That particular foray into remote terping ended up with the nurse and myself writing notes back and forth.

This little hospital really doesn’t have a lot of private rooms where they can put people with special needs. It is the size of a large postage stamp. But the staff is kind and caring so I wasn’t upset. We just worked it through.

Thankfully, I didn’t have pneumonia and went home with instructions to use Afrin Nasal Spray (sorry for the ad) for NO MORE than 3 days less my nose get addicted to it (A nose can get addicted? Who knew?) and to get 12 hour Sudafed (sorry for the second ad) and take it as long as I had symptoms. I still have symptoms so I’m still taking Sudafed. I ponder taking another run at the nose spray.

What this demonstrates is that while a terp who was there with me could have dealt with the noise level, the terp who is working remotely may be as unable as the deaf or HoH person to understand what is going on in a very noisy environment.

I now have a friend working for a company providing this sort of terping so I’m going to mine information from her and get back to all y’all.  🙂

And oops, I have to run now.  So without further ado, here’s a new post.

It’s All About Communication


I spent most of the day hanging around Mass General Hospital today while a family member had surgery. During these many hours I spent some quality time pondering the imponderable. Why do the Hard of Hearing have so much trouble with service providers, particularly medical personnel?

On the one hand, I can go to NVH and everyone I run into there knows how to relate to a hard of hearing person.  But…they have an Interpreter for the Deaf on staff – and are proud of it! They do their best to offer assistance promptly and efficiently.  MVH on the other hand seems to have no idea how to relate to someone with a  hearing problem.  I mean clueless – totally.

When an ENT and their office staff members are equally clueless I am both baffled at the lack of competence (lets call it what it is) and frustrated by the lack of response.

So what’s the difference between MVH where no one knows what to do and NVH – a tiny, isolated, HoH and Deaf friendly hospital? What gives? It can’t be corporate philosophy as they’re both owned by the same mega-chain.

I kept kicking the can down the street mentally and came back to the concept of AWARENESS.  Good old being in the moment awareness. And how do you become aware – even in the Buddhist sense of learning to be in the moment? Training followed up with practice.

Not a handout no one reads, but pervasive institutional training.  Someone at NVH took the time to make it a HoH and Deaf friendly facility.  Training and practice. You can’t learn anything without training of some sort and some kind of practice in using the training.

It isn’t about hearing  Not everyone can nor should get a CI. It is about communication.  And to be able to communicate with anyone you have to be aware of communication styles.  Without adequate training and practice – or some positive exposure to the HoH or Deaf – you have folks who are blissfully unaware that they are inadequately serving clientele.

It is why I’ve literally told more than one doctor: “You are not competent to serve this patient” when I’ve acted as a patient advocate. It is why I don’t hesitate to pull the plug on an incompetent provider who is unwilling to learn.

So, having had this “awakening,” I’m at the hospital making notes on my trusty iPhone.  

Tonight I started a Google document presentation. It’s in rough draft and it’s out of order.  It’s something I can put up on the web and make accessible to the world.  I might reach out to some terp type folk I know. Gotta start somewhere.

Then I plan on creating a neat, tight little document in big type that can be printed and handed out to  providers who take our hard-earned money and give bloodily little back in return regarding communication.  Something with just a few easy points – because they aren’t going to read much – and nicely phrased to be informative and non-confrontational.

Not everyone is as obnoxious confrontational aggressive assertive as I am, so a handout needs to be short and sweet.

Why? Really – why?


Maybe my friend David of Deaf In Prison can tell me. Why on Earth does someone start talking to someone and then turn and walk away. What?!  The mouth is on the front of the body, not the back. Is there some switch I don’t know about that moves a mouth from the front to between the shoulder blades?

Okay, I know I’m not the only patient at the surgeon’s office. I get that. Personnel who look familiar to me may not remember me since they are not a primary care office. But, really! What is it with hearies who will say something, before I am close enough to hear, before I’m sure it’s me they’re talking to, and then turn around and walk away and I know they’re still talking. The person could be singing the Torts Law song, “Chicken bone, chicken bone, choking on a chicken bone” from law school torts class, asking me how my New Year was, or telling me something important.

Exasperation ‘R Us

When I was close enough to guess I’d be heard I said, “I’m still deaf.” She turned and looked over her shoulder and I continued. “I was deaf the first time I met you. I have been deaf every time I’ve seen you since then, and I’m deaf today. You have to look at me when you talk to me.” I don’t know what she thought about what I said, but she did face me and did communicate appropriately with me. She’s really a very sweet young lady and I’m sure she just forgot, but I swear I want clothing designed that says – in large type “I’m still deaf.”  Maybe flashing off an on – in red letters – with spangles.

I will give her this, she was as sweet and kind as could be just as she always is and I do like her, I’d just like her better if she could remember I am functionally deaf in noisy situations – like doctor’s offices. (sighing)

The doctor – he’s no problem, he’s got a good voice and is a good communicator.

At the desk for scheduling surgery I’m back to “I’m still deaf.  You have to talk to me. I can’t hear you. Look at me when you talk to me. The piece of paper in front of you isn’t listening, I am.” 

Meanwhile, my daughter who is across the room, near the door, is able to have a conversation with the woman regarding scheduling.  I almost got up and suggested they make the arrangements without me. Not that my daughter tries to undermine me – she wants me to be fully engaged, it’s just that I can’t figure out how the hell these people do it.

Really, hearie friends. Do you routinely talk to someone through your back?  How does that work for you? Is there a way I can get in on this phenomenon?

The Joy of Bunk Beds


When my daughter brought me home to her place, I ended up sharing a room with my 7-year-old grandson.  I’ve got the bottom bunk. Overhead are thick, firm, wooden slats. I don’t believe anyone realized how useful they would be. I’ve been able use them as therapy bars. First I could use my left hand/arm to help whilst my right arm/shoulder was a shattered disaster. Now I’m using them to help lever myself and the knee around. When we do the shoulder again, and when the right foot is eventually fixed I suspect I’ll be appreciating the joys of bunk beds again.

Except for times when I’m bed-ridden (such as for these few days) I am usually here just for a few hours of sleep.  “The boy” (which is the term I use to identify my grandson to the dog) is the one who uses the room during the daylight hours when he is here. “The boy” and I both have hearing deficits, mine are merely catastrophically worse than his (thank heavens). He tends to have a big voice (as do I) so most of the time I can hear him better than most – sometimes way too well.  And “the boy” is also McKinley (Baby Dog’s) favorite rough and tumble playmate. Every dog should have a wonderful boy to roll around the floor with, to play tug of war with, and to romp and play with until totally exhausted. They usually collapse at the same time. Life is good.

The eldest girl is more of a momentary angel gliding through Kinley’s life giving tummy rubs, soft kisses, and tummy rubs. The younger girl is presently doing her imitation of the grinch.  This too will change. Fortunately, in a small home with an amazing number of people here (the VNA personnel were amazed as adults and children popped into existence at the top of the stairs), there is always a kind word and pat for McKinley.  And I never miss knowing someone is at the door here because of McKinley’s “announcing” visitors – although it would be good if she’d announce just a wee bit less.

When You are Unconscious it Doesn’t Matter


Today I had a day surgery. Last night it poured freezing rain and it was still a frozen mess while my son-in-law drove me off to meet my fate. He’s a good driver, BTW.

When we got there I was bemused about the name of the unit.  Surgery Day Care – it has a certain cachet to it, don’t you think?  We have day care for kids and day care for dementia patients – now there is day care for surgery patients. Who knew?

Really, though, it was just plain old Day Surgery.  Maybe the person who designated the name was fond of the sayings of Yoda.  Day care surgery you will have. Healed you will be.

Beings as this was the place I had the bad experience with the other day I was pleased to find out that I had a mixed bag of experiences.  The anesthesiologist (aka the ‘gas passer’) didn’t know sign, but he knew Deaf and HoH and said I could call him by his first name, which was cool. He also was concerned about the ototoxicity of Tylenol and said he’d be careful. He always looked right at me and he had a great voice.

My prep nurse was awesome – again, didn’t sign, but was easy to teach to talk to me rather than around me. The ER nurse was a loss whether he was wearing a mask or not. Fortunately, Andrew (the anesthesiologist) really ran the communication part of the show.

My surgeon forgot about my hearing loss. We do the “I can’t hear you” thing almost every time we meet, but it is not like he’s my primary care, so I tend to be forgiving towards the ortho who is doing his best to put my various body parts back together with toothpicks and glue.  He tries hard and he’s honest with me – which is a huge issue for me. Just tell me how it is and will be.

I went out like a light in seconds – then it is really pretty unimportant what I don’t hear.  They had my knee marked (cut THIS one) so the appropriate knee was incised in various places to fix the tear(s) and get a light in to get a look around. I don’t know how many incisions since the knee is wrapped and then wrapped again in a huge ace wrap.

To add a thrill to the day my daughter could not come get me as planned as one of the kids came down with something closely resembling either flu or food poisoning. I texted one of my best friends to come get me and his car had a flat on the way. Why the dickens he drove on it until it looked like a black rubber Christmas wreath neither of us are quite sure about.  He changed it in the parking lot rather than where he realized he had a flat. Apparently it made sense at the time.

Nonetheless, he and I communicated by text – and when he’s with me he has a fantastic voice so no problems there.  He and my brother have the only voices I can recognize over the phone.

I insisted on walking out of the hospital since the surgeon told me I could.  The nurse and my pal sorta shook their heads and walked with me – yes it hurt, yes I’m glad I did it, and really, at that time I wasn’t using my ear. Walking on my ear would be rather difficult.  Instead, I was limping down a hall looking determined and testing my stability.

Got home to two nurses from VNA (Visiting Nurses Association) who were here to work with my daughter.  Amazingly enough, both of them were totally great for a deaf or HoH person.  My fav had a pocket full of homemade dog biscuits and the picky Baby Dog ate two of them.  Score.  Baby Dog was absolutely insane with joy when I got back, which is as it should be. While recovering I was dreaming about petting her – so the shared joy is mutual.

So, I had a successful operation on the torn bits of the knee, was able to communicate easily with a few folks and with determination with others. The operation was done under a general anesthetic so they could have been whispering in Swahili while listening to We Are The Champions by Queen and I wouldn’t know the difference.

Under the best of circumstances


I belong to a wee little Druid Grove. The old timers there know my hearing is bad, but I’m a known quantity so they don’t think about it a lot. In fact, a few of them forget it most of the time and start making so much noise I can’t hear what I need to hear. Hidden issues remain hidden even over many years, even after many statements. We all have our own abilities and disabilities anyway from wheelchairs to canes to wretched puns to creaky bones.

Every year at Yule the ceremony begins with lights out and windows open to replicate the creation myth of the Norse – cold and dark.  It is probably my favorite part of the entire liturgical year despite the joys of being unable to lip read.  Even an Interpreter would be useless in the dark since I’ve got a frozen Franklin cup full of ice in one hand and sometimes a candle in the other.

This year the Dean and the Secretary pointed out early that I’m functionally deaf and how people need to talk directly to me and be sure I know they’re talking to me, not just talking in general.  This was because there were  new individuals present. Two of our visitors were quite talkative – Chatty Kathy and Chatty Karl. And we also changed the format – all meeting around the feasting table, rather than sitting in a circle in the living room of the Dean. In general, circular situations are more HoH/Deaf friendly.  Fortunately, I tend to know the meditation and a good deal of the material being presented after all these years. So even if I don’t hear it I get it – hard to miss a candle being lighted or a frozen cup of ice. 🙂

This year the extra people resulted in a very long ritual – since it is in blót format there’s more participation with the Toast, Boast, and Oath. We didn’t have a Sumbal this year (asperging) and for those of you interested in this, there’s a lot of mutually contradictory information on the web. 🙂 In general I don’t like anything that would get my HA wet.

One thing I did note is that the most talkative one (who didn’t interact much with me) knew how to come up behind a deaf or HoH person and gently direct with her hands on my shoulders so that I automatically moved to one side or the other. I don’t think most folks know how to maneuver around the Deaf of seriously HoH and that may be worth an observation here.

If you want to get attention, stamp hard on the floor a few times (assuming there are not a zillion people around) or pound on the table (again, assuming dishes won’t fly off) so that we can literally “feel you.” Another method is to flash the lights, which our Dean used to great effect with hearies and the deafies alike. That’ll get our attention immediately.

But in a crowd, if you come up behind a Deaf or HoH person a gentle touch to one shoulder or the other either gets a subtle move on my part away from that touch or lets me know you’re there. Please don’t ever grab one or both shoulders and attempt to move someone or swing them around to face you. That’s rude.  If you end up moving between two signers, just move quickly, don’t scrunch down. You might want to sign Excuse Me if you know how –  just keep on trucking, through.

Since this isn’t a high stakes situation (medical care) and since I’m familiar with the ritual and most of the folks there, this is an under the best of circumstances for me. I can relax and let life flow. Besides, the cooking is always fantastic for the feast. 🙂