Month: April 2014

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.