On the Ground in a Hearing World – Getting What You Need

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!

0 thoughts on “On the Ground in a Hearing World – Getting What You Need

  1. Paul, I am so proud of you. We all encounter difficulties on a daily basis, so its not at all possibile to be accomodated 24/7. I know there are people out there who feel they should, but personally speaking, it just does not happen that way.
    For example, I attended a lecture friday nite on positive energy. I knew the location very well. It was a small and intimate room but it was wood floors, mirrored walls all facing the ocean on the beach. I advised the speaker before the meeting of my hearing issues and he asked what I needed. I told him I may need him to rephrase, speak up and when our eyes are closed for meditating, i just may not catch things.
    He was great, but the acoustics in the room sucked big time and I caught nada during his taking us thru meditation. all in all, I did have a nice time but my friends gave me a synopsos on the way home.
    What could I have done? I should have planned better. I should have brought my FM unit which I totally forgot about.
    All in all Paul, I truly admire your strength, YES, strength. You are working so hard and u did come to the realization on your own that your RECOVERY has to be first. Even if it meant just sitting with these people and feel the energy.

  2. Paul,
    This is a great list of do’s and dont’s. I’ve made all those mistakes and more. There’s a learning curve to life with hearing loss. Informing people gets easier as time goes on. Your point about tolerance was right on. So often I’ve been faced with other people who have disabilities. I want so much to help and do the right thing, but frequently not sure what they want. It’s extremely helpful when that person is confidently matter-of-fact, and doesn’t take offense to my clumsy attempts at accommodating them. I try to remember this when informing others of my hearing loss. I’m so proud of how well you’re doing in recovery. KEEP IT UP!! Smiles, Kim

  3. What a wonderfully smart guy you are, Paul!!! I’ve gotten to know you through words on my computer screen, the way I have gotten to know most here at the SayWhatClub. Words offered through email, both public and private, and through blog contributions, both on SWC and on your own weblog, have shown me who Paul is (I’ve even met AE).

    I’ve read words that speak to your frustrations in life, both with hearing loss and with life in general, I’ve laughed when your words are funny (often), I’ve cried when your words show pain, I’ve been inspired to think further and feel deeper by your words, and I’ve been prompted to write in response to some of your words. The words offered here are no exception.

    As are Pearl and Kim, I am very proud of you and am amazed that in such a relatively short time (though probably it seems an eternity for you) of dealing with hearing loss (some of us have dealt over decades) you have learned all (most anyway. LOL) the essentials for understanding and participating in life with less than perfect hearing.

    Of those essentials, tolerance is a big one (at least in my book). As with anything in life that requires tolerance, we must remember that said tolerance is more for ourselves than for those who we extend it to. Have unlimited tolerance, but learn when, where, and how much to apply, it is key.

    I wish you peace and continued success in your recovery, and I’ll keep reading your wonderful words.


Leave a Reply

%d bloggers like this: