Most of us are aware that a Deaf culture exists. Simply visit a state school for the deaf, and observe students and teachers communicating mostly through American Sign Language (ASL). Or sit in on a coffee house “chat” with a local Deaf social group, and notice how quiet the room is while attendees use sign. The Deaf culture is something its participants are proud of, a culture with a shared ASL language and communication style that goes back many years.

Now observe a local meeting of a hearing loss support group. The keynote speaker communicates with both sign language and orally. A man sitting in the back relies on an ASL translator to understand the speaker. A row of people read real-time captions from an overhead screen as a person types what the speaker is saying. Two women sitting up front watch the speaker’s lips attentively to catch each word spoken. All of these people, except the sign interpreter and typist, are hard of hearing. Yet they all have different ways of communicating and understanding one another.

Without a shared communication style, can individuals with hearing loss really have their own sense of community or culture? Readers of this blog recently shared their opinions…

“I have total hearing loss in both ears. But because I was adult deafened and am oral and do not use sign language, I am not considered culturally Deaf, rather hard of hearing. Yet I am “deafer” than 95 percent of the students at the local state school for the deaf who have some residual hearing. I am in between cultures. I cannot participate in the hearing community, nor the Deaf community.” – Sherry Mason, Missouri

“My husband has hearing loss, and it is very difficult to hear in restaurants and other public places. I think people who don’t deal with hearing challenges are unaware of the obstacles they create. Is that cultural?” – Amy Hemingway Smith, Texas

“How about coming up with a definition of ‘culture?’ And with some parameters for what you mean by ‘hard of hearing’ people? Do you mean only people with partial hearing loss who use speech (and maybe speechreading) to communicate? I’ve been assuming you are distinguishing between Deaf people (who use sign language) and hard of hearing people who don’t, but not everyone will realize that. Also, I still think that only people who socialize with several oral hard of hearing people at the same time can really answer the question. People who have never done so aren’t in a position to know themselves whether or not there is a HOH culture–they won’t have seen it in action.” -Dana Mulvany, Washington, D.C. (has hearing loss)

The last comment raises a good question. How can a hard of hearing (HOH) culture be defined?

• A shared communication style. They prefer to speak orally, instead of only using sign language. Lip reading (also known as speechreading) is also a common way to understand one another.
• A strong reliance on technology. Hearing aids and assistive listening devices are available to help the HOH population understand speech and hear important sounds.
• A strong reliance on closed captioning. Captions assist with understanding television, movies, and (when available) live presentations. This could also fall under the technology category.
• Emotional connection. This would include not always feeling connected with the hearing world because of difficulty understanding speech. For those not comfortable with sign language, they may not feel part of the Deaf culture. Emotionally, individuals with hearing loss might feel somewhat isolated from the hearing and/or Deaf “worlds.”

Author Bio:

Shanna Groves is the author of Lip Reader (June 2009 release), a novel about an Oklahoma family’s hearing loss experiences during the early-1980s. Read the Lip Reader Blog at http://shannagroves.blogspot.com.

For starters, this isn’t just a post about getting accommodations for hearing loss; interpreters, CART, captioned TV/movies/phones, etc. Nor is it about picking your way through the mindless bureaucracy of getting assistance for the above (and hearing aids, etc). This post is mainly about strategies for coping with hearing loss in real time, with real people – the stuff we have to do daily if we’re going to be effective in our world and get what we need.

Positive spin here – YES YOU CAN – this is NOT a griping session either. I write here based on the hard learned reality that no matter what equipment and/or accommodations you get, you’re still going to be at a disadvantage sometimes, unless you learn how to PARTICIPATE FULLY in the communication process. This article isn’t for sissies – though I’ll fully admit I’m still learning these points myself, so don’t be discouraged. Some of this stuff may take you outside your social comfort zone. Practice makes perfect; comfort zone re-entered.

As an introduction, there is a hard reality regarding accommodation: sometimes it just doesn’t happen. Maybe not when or where you need it. Sure, you have a legal and moral right to it. And sometimes, you won’t get it. Life is full of little inconveniences for everyone (hearing or not), so  much of the time, I’m willing to let the communication chips fall where they may – but every once in awhile, something REALLY IMPORTANT comes up, and even if it was promised, your accommodation may not appear. Or doesn’t work well enough to be effective (a variety of reasons, technical or “administrative” can cause this scenario). The question then becomes: HOW WILL I GET WHAT I NEED?

Here’s a pretty compelling example. I’m a recovering alcoholic, and bi-lateral HOH (moderate to severe). When I first went into a behavioral health facility for treatment (inpatient detox and outpatient group therapy), I made it clear to the intake staff that I would need accommodation for my hearing loss. Since I don’t know sign language (yet), I recommended CART. To make a long story much shorter, the facility simply could not provide this service, and yes, I went to all the way to the President of the company! For those efforts, I got a lovely “Dear Paul” letter – but he (the President!) actually did visit me in person during a later stay (this will make more sense shortly).

Something to remember: perspective and attitude can have a huge impact on outcome.

During my first stay at this facility, and after release from inpatient treatment, I made it my NUMBER ONE priority to get accommodated for my hearing loss in outpatient (group) treatment.

Those of you in recovery yourselves will recognize (have a good chuckle) the deadly error I made in doing so. I refused group treatment unless I could be accommodated. The facility counter-offered individual therapy, which (offer) I accepted, as I find one-on-one easier than groups. An appointment was made with me to see a therapist 26 days after my release from detox. Not “for” 26 days, mind you – one appointment, 26 days later. Are you recovering folks rolling on the floor yet?

I’ll spell it out for you non-addicts. My attitude in putting my hearing accommodation BEFORE my recovery doomed my recovery to failure, and me to relapse. I was back in the facility detoxing again  well before my first therapy appointment.

Needless to say, I’m out again, and 24 days sober at this writing (I didn’t make 7 the first time). Fortunately for me, on the second pass, I recognized my error, and accepted ALL recommended group therapy without complaint. And no, I’m not going to roll over and let them be complacent about accommodation – but I’ll be taking care of that from a much stronger place, at a more appropriate time. Today I’m busy getting my butt saved from my alcoholism. Today I have 4 outpatient group sessions a week, and I attend an AA meeting daily. My second detox process convinced me. We always get worse, never better.

The question remains: how am I managing in these group venues? Not perfectly, of course, but remarkably well, and the talking points below will explain how this works.

 
1. Honesty

This is mostly about being honest with yourself on what your real abilities and needs are in terms of your hearing loss. Obviously if you have nearly zero speech recognition (SR), you’re going to have to work a lot harder to get what you need than if you’ve got (as do I) between 50% and 80% SR (depending on the day and the situation). Go into every situation knowing your limits and what you and others can do (see below) to help you get what you need.

Honesty is also about telling others what you need from them. This kind of honesty works best when it’s done right up front at the beginning of an interaction.

 
2. Boldness

NOT the same thing as obnoxiousness – this just means NEVER hesitate nor apologize for requesting a repeat, slow-down, etc. Faking it can get you in a worse pickle than you’re already in – and most folks I’ve met, when they’re politely told I’m having difficulty hearing, are at least understanding if not helpful (keep in mind it’s a learning experience for most hearing folks). The few who aren’t should be politely sidestepped.

3. Patience

Be patient both with others and with yourself – this is essential. Again, most people aren’t used to working with HOH folks, so try to put yourself in their shoes as they adapt to whatever method you need to use to communicate – be it paper and pencil or otherwise. Don’t beat yourself up if you can’t understand everything – in a group setting, ask for help or explanations “offline” – one on one.

4. Tolerance

Notwithstanding my sidestepping advice above, some folks just can’t seem to “get it” even though they try. Recognize that they may have their own “limitations” unrelated to hearing. Be assertive, but polite. Getting angry serves no useful purpose, and if you act on your anger, it just reinforces a common stereotype.

5. Gratitude

I’ve said this before and I’ll say it again – losing my hearing has taught me who my real friends are – the ones who’ll cheerfully put in the extra effort needed to talk with me. I make it a point to thank people who’ve helped me in this way, be they friends or strangers. An attitude of gratitude helps other people want to help you.

6. Acceptance

This may be the hardest one. Yes, you should be accommodated. Yes, people should help you when they know you’re having difficulty. Yes, it isn’t fair that you have to work to teach people how to work with you. It is what it is. And what it is isn’t always what you need or want. When you accept that (you don’t have to like it), you’ll find that your work is easier, and you’ll have peace.

7. Practical Tips

- Move around! Find the location where your SR is best. In a group setting especially, this can change often.

In my AA meetings, I flip my chair around to face whoever is talking (we’re in a cafeteria style table arrangement). If they’re a very quiet talker, I may even move closer – yes it can look odd or spooky, but most of the folks in there know (or learn real quick) that I’m HOH.

- Ask for the whole conversation to be relocated if you’re in a noisy environment.

I remind people that the fan noise they can ignore makes it almost impossible for me to understand someone from across the room. I’ve had people respond by a) turning off/down the fan, b) forming a group huddle closer to me when possible. Remember, you have a right to participate fully in the conversation if at all possible.

- If there’s just no way hearing and SR is going to happen, grin and bear it, but be sure to let folks (particularly group leaders, instructors, etc.) know you’ve had a problem. This information is vital if you ever expect to get what you need.

In my outpatient therapy sessions, I always let the whole group know I’m HOH, and how they can help (by speaking slowly and carefully, and not covering their mouths with their hands – something a lot of people do unconsciously). I haven’t found anyone in this group yet who wouldn’t try to help.

 
All things said, communicating effectively when you’re HOH is harder, but not really that different from what’s required of hearing folks every day. The attention ANYONE puts into speaking clearly and listening well is ALWAYS the key to effective communication.

- Paul S

Do you have tips or tricks you use to get what you need in the hearing world? Please share them here in a comment!

7/28/2008 – Skirmish Lost – War Declared!

The following transcript of a conversation I had today is not complete or perfect – it’s from my best recollection upon arriving home in rather profound emotional turmoil and disappointment. I had to scribble it on paper as fast as I could, while it was fresh in my memory. I now more calmly and patiently transcribe it here for the edification of those who believe in the Happiness-care tooth fairy. At the outset, know that this is NOT OVER.

This is a conversation between myself and my “official” case manager (CM) at St. Goofy’s Bombastic Happiness (SGBH), an arm of St. Goofy’s Medical Center, a facility of Goofy Happinesscare North (GHN).

Recall from part one that I had a discussion with my “fill in” case manager about my ongoing outpatient treatment, during which I requested and explained CART accommodation. The following conversation was with my actual case manager, Susanne, with whom I’ve had pretty good rapport in general.

Susanne: What can I help you with?

Paul: I need to find out if my insurance will cover the Partial [outpatient group therapy] program.

Susanne: I spoke with Judy [temp CM I talked to Friday], and she had information for you, but you left.

Paul: Apparently she wasn’t aware I was already discharged, and had to leave.

Susanne: Ok, let me go look and find the information for you – it’ll just take a couple minutes.

Paul: OK

…

Susanne: You’re eligible for our CCDI program.

Paul: One important thing I need to tell you – I can’t do the full 10 days [assuming this acronym refers to their 10 day Partial program]. I’ve got to get back to work.

Susanne: It’s not a 10 day program – it’s 3 times a week, in the evenings; it starts at 5:30 on Mondays, Wednesdays, and Fridays.

Paul: That’s not what Judy and I talked about!

Susanne: That’s what your insurance specifies, the CCDI program – and we can provide an interpreter for you. [Note that I had not asked for an interpreter - I had requested CART]

Paul: I can’t use an interpreter – I don’t speak ASL! I need CART!

Susanne: We’re not set up for that. All we can do is provide an interpreter.

Paul: By law, you have to accommodate me! I have information on how to do this easily with remote CART. All you need is a computer with Internet, Skype, and a microphone.

Susanne: So don’t you lip-read?

Paul: Yes, I can lip-read a bit, but I’m not totally deaf – just hard of hearing, so if you’re facing me, I can both lip-read and hear some of what you’re saying. But in a group conversation, I can’t follow.

Susanne: So you’re telling me the CART people can follow a conversation where 3 or 4 people are talking at once?

Paul: No – I couldn’t do that when I could hear!

Susanne: I can’t do that now (smiles).

Paul: What I’m saying is that when someone isn’t facing me, I can’t understand them, and that’s what happens in a group setting. But the CART person can hear and transcribe any single speaker in the room.

Susanne: So what happens with this setup? People talk, and you do what… read?

Paul: Yes, on the computer screen.

Susanne: I don’t even know if there’s a computer available in the room we do the groups in – and I doubt there’s Internet. It would take at least several days for us to set this up, and I don’t see how the program could benefit you given that you can’t go past this week. The only thing I can recommend to you is AA meetings – we do have one that meets here, Tuesday nights, 7:30 p.m.

Paul: I guess you’re right.

[Much prognostication (by me) of future encounters of this sort follows, but is omitted here - and I insisted that Susanne make photocopies of the material (and postcard) provided by our (SWC) Gayl to give to "them" for the benefit of future patients - which she did.]

[Pleasantries, goodbye, etc.]

[Note that the suggestion of the AA meeting completely sidesteps the HOH/CART issue - what elephant? I don't see an elephant!]

So now what?

Well I haven’t formulated my plan of attack yet, but do trust me, THIS IS WAR. I am absolutely determined that these people will enter the 21st century and start accommodating late-deafened/HOH folks, or they will PAY in real dollars for their ignorance and dismissal of this issue.

This isn’t even about me anymore. This is about everybody who comes to them for help and is turned away because their hearing loss can’t be accommodated in one of the simplest, cheapest (most “reasonable”) ways.

Can you tell I’m pissed?

And what of my recovery? Well don’t worry, I’m not about to throw the baby out with the bathwater. I’ve still got determination to keep my LIFE, and I’ll find what I need out there (if I have to, I’ll START a late-deafened/HOH AA meeting! – I have plenty of experience with 12-step).

Wish me luck as I dive into my new role as the HOH Radical.

Paul S

Questions, questions.

“What do you think made you start drinking?”

Laundry List:
- Pending divorce and expected result: bankruptcy
- Looming debts rivaling the national budget
- Loss of driving ability from sporadic bouts of vertigo (fear factor)
- Tinnitus
- Hearing loss

“What – wait, you have hearing loss?”

I read your lips and guess much of the rest.

- Loneliness (LL continued)
- Endless battles for accommodation

“Any major issues in your childhood that might be involved?”

And so it goes. The above is an excerpt from one of many interviews I had in the behavioral health facility where I recently spent 4 days (inpatient) for alcohol detox.

Great facility, great program (I detoxed successfully, and will get outpatient aftercare).

Of interesting note; it turned out to be much easier communicating with my “peers” (other patients in the facility for a variety of reasons) than with most of the staff.

All the patients wear wrist bands of various color – it’s a bona-fide hospital – some wore more than one (I had 3 – red, yellow, green – I liked to call myself a traffic light).

My green band meant that I voluntarily requested a bed in the facility (meaning I could choose to leave any time I wished – not true for everyone). The red band meant that I have allergies to certain medications – to remind staff to look at my chart before administering anything to me.

The yellow band I had to request on my own from a day nurse, even though I’d mentioned this issue at my intake interview – it meant “fall risk” (vertigo).

Now I’m not one to jump off a horse (particularly one I picked out and saddled up myself) in mid-stream, so I wasn’t going to leave the place until I’d fully detoxed and my doctor agreed with my assessment.

When that finally did happen, and I got to speak to my case manager (CM) prior to going home, I had a few questions…

My first question was regarding the “missing” color band (not the yellow – but some color I never received because it doesn’t exist). It was, of course, the “Deaf/deaf/HOH” band. Or perhaps even a generic “different ability” band. Something that would at least flag the staff that they’d need to provide some extra accommodation for my situation.

I’d wear my “Please Face Me” pin, but pins are (understandably) contraband in a mental health facility.

My CM told me to be sure to write that on the evaluation form (which I’ve not seen a trace of yet).

My next “question” (really a statement) gave my CM a bit of that “deer in the headlights” look.

“In my aftercare program (group therapy sessions), I’m going to need CART.”

The CM needed the acronym deciphered, of course. Being the helpful guy I am, I did so, and also let her know that I could hook (whoever) up with some folks I know who can provide excellent remote CART – and all you need is an Internet enabled PC, a microphone, and Skype.

Those deer were becoming hood ornaments at an amazing rate.

“Well, there is a PC in the room where we do the sessions.”

Good, as long as it’s got Internet; and the folks I can hook you up with can tell you everything else you need to get/do.

[head nod affirmative]

And by the way, it’s required by law that you accommodate me.

The deer were frolicking in the roadway; the venison business booming.

I let it go at that, and moved on to more mundane questions about my ongoing meds, the schedule for aftercare, etc.  The road crews cleaned up the mess, and traffic flowed cheerfully along now.

Although I’m pretty sure most readers won’t identify with my original goal, nor my choice of “hotels”, I’ll bet many of you have similar stories to tell about your interactions with the medical community in general.

Let’s face it – there are probably more than a few AUDIOLOGISTS who don’t know what CART is (or at least won’t mention it if they do). I’m learning (with the help of my SWC friends) that if there’s a battle to fight, than fight I’d better. Particularly when it comes to my (OK, mental) health.

In part two of this post, I’ll let you know how the aftercare accommodation turned out.

Cheers and best wishes for your own battles.

Paul S