March 27, 2013

Dealing With a Real Life Disability RJ's Way


I am lucky to have RJ Walters as a regular reader and commenter on satisfying retirement. He is a  prolific blogger, maintaining several different blogs on a regular basis. He is well read, thoughtful, and not afraid to voice his opinion when something strikes him as silly, dumb, or dangerous.

In addition to all of that, RJ has a disability: He is deaf. Importantly, RJ is deaf but in no way does that define him. As we age many of us will face limitations on our health or well-being. I thought it would make for both an interesting and educational post to ask RJ some questions about his condition, how he deals with it, and what he can teach us about diversity. I found his answers insightful and motivational. I trust you will, too. 

1) You once said to me, “I am just a guy who is deaf, not a deaf guy.” In your mind what is the difference? Is it one of attitude or acceptance?
Let me start this answer with a question. Who are you? The answer to that might be “I am a Christian”; “I am a husband”; “I am an engineer”; “I am a father”. Your first few answers show primarily how you identify yourself. For me “I am deaf” would come pretty far down the list. When I do mention it I say “I am deaf but that is not who I am, it only an obstacle I face on a daily basis”

Some people, particularly those who are born deaf, often associate primarily with other deaf people. Those type of deaf people identify themselves as being part of the Deaf culture (with a capital D). I am deaf (with a little d). I seldom am around other deaf people instead I choose to live primarily in the hearing world. It is not that I don’t accept my deafness (it is impossible to not do that) but more of how my deafness doesn’t control my life.

2) How long have you been deaf? What caused the condition to start? How did you react and deal with the period when your hearing was slipping away?

I could fill a book with answers to these questions. I started going deaf in my early college years in the mid 1960s. My conditions has a long medical term but is basically that my cochlea have filled with cartilage replacing the liquid there that is critical for balance and hearing. It is supposed to be inherited but I can’t find anyone in our recent family history who was deaf. Go figure...

My hearing slipped gradually away between the time I was about twenty until I lost it all at the age of forty-two. At first it was only in one ear and I managed to easily cope. It bothered my roommate in college more than me. You see, I worked my way through college in a dormitory cafeteria. One year I ran the breakfast meal and had to get up every morning around 4:30am. When I ended up on my right side during that magical hour I never heard the alarm going off. My roommate had to jump down off the top bunk and shake me to wake up.

When I started losing my hearing in my good ear things started changing rather dramatically. I wore varying strengths of hearing aids for about fifteen years until they were no longer effective. During the last year I would wake up every morning and put in my hearing aid to see if I could hear that day or not. It was a guessing game. That was the most stressful part of my life. It was almost a relief to finally lose that last shred of hearing.  

3) How has the loss of hearing effected your retirement in terms of relationships and friendships, your marriage, what you choose to do to stay active and involved, like being involved with the soup kitchen?

My retirement years came more than twenty years after complete deafness so not a lot changed. But, like most I suppose, when I retired I went from being constantly around dozens of people everyday to primarily just my wife and I. That is a shock for many of us but it was a double whammy for me. Casual friendships are simply not easy, I might even say nearly impossible, for a deaf person in the hearing world. Chit chat is a normal part of most people’s lives and it is usually the beginning stages of friendship. Without it making friends is hard work for both me and my potential future friend. I’m not saying they don’t happen but they are rather rare. So, when I am asked what do I miss the most about not being able to hear I surprise many by saying I miss chit-chat. 

When I proposed to my wife more than twenty five years ago I told her I would very likely be deaf in the not too distant future and would understand if she refused my proposal. Instead she simply said “well then we better get started learning sign language”. I broke down in tears with her response and we did indeed get started learning signing soon after we were married. 

As far as [my volunteer work at] the soup kitchen goes I kind of fell into that in various degrees. At first it was doing the dishes and then that progressed over the years to doing all the meal preparations a couple of days a week. The friendships with the staff there was an ongoing process. Most there, both volunteers and customers, know I am deaf and over the years we have broken the communications barrier with hand written notes, gestures and whatever it takes.

That in deaf circles is know as “Total Communications”;using whatever is best for a given situation. There is one friend who comes often for lunch who knows some sign language. We always have a little chat; that means a lot to me and I think to him also. 

4) During a typical day, are you constantly aware of your situation or does it take something out of the ordinary to remind you, “oh yeah, they don’t know I can’t hear them.” 

When I spend the days here at the homestead I rarely think about my deafness. My wife and I fairly effortlessly communicate with each other. We even have arguing down pat in sign language. Since I have managed to maintain a pretty good speaking voice (but don’t ask me to sing) I talk and she signs so most of the burden is on her. It is funny in that regard, when we do go to functions and such with other deaf people I have to tell my wife what they are signing as she doesn’t see signing often and she has to sign for me to them as I don’t physically sign much myself. 

But, whenever I go out into the “world” I am constantly made aware that I can’t hear. That gets tiring but it is just something I just deal with. I always carry a small pad of paper and a pencil wherever I go but you would be surprised at the number of people who refuse to use them! They simply can’t understand that I can’t hear them since I still speak fairly clearly. I have become pretty good at anticipating questions people will ask in different situations. So, even though I am not a particularly good lip reader I can usually figure out what they say and respond correctly. Usually but not by any means always.

5) Normal parts of American society, like ordering at a drive-through, seeing a movie or performance, watching TV…what adjustments must you make? 

I am a techie so I have all kinds of tools around to help me cope but drive-throughs have long been a thing of the past for me. There are a few movie theaters in major cities that have a captioning system but I have never tried them. I just wait for it to come out in DVD. The movie “Lincoln” is one I am anxiously waiting for now. Closed captioned TV has been around for about twenty years now and is available on all new TVs so I have full access to most programs now. It took the Americans With Disabilities Act signed in 1990 to make captioning mandatory. The quality of captions varies somewhat depending on whether the show hires “on the cheap” and therefore produces poor captions.
I wake up to light now instead of sound. A light flashes over the bed at the given hour. I have  flashers in the shop and barn to let me know if I have left something on before I lock up for the day. Of course texting has brought me the capability of now communicating away from home. There are tools out there for most any situation. 

6) What words of encouragement or reality-checks would you offer to someone who is in the same situation as you, or dealing with some other limitation? Are there both specific and general thoughts you can share? 

When I went deaf I initially thought it was the end of the world for me. My ear doctors basically told me to go away as they couldn’t help me any longer. It took quite a bit of searching to find organizations to help me cope. One of the first was ALDA (Association of Late Deafened Adults). This group showed me that I was not alone in the world. They showed me that there is indeed life after deafness. Although I don’t have much contact with them anymore they were a life saver when I needed them.  

If there is such a thing as a good time to go deaf it is now. There are numerous tools for coping and the Internet is usually just a google away from giving you a list. Cochlear Implants which is a medical/technology procedure actually allows many who are deaf to hear again. Unfortunately my particular brand of deafness can’t be helped by it but it is quite successful for many. There are now tools to help cope with many different situations. Harris Communications puts out a good catalog of products. Due to limited use they aren’t cheap but... 

In some ways most handicaps are the same. They put obstacles in our path to normal living. The main thing I would say about this is that life goes on after the handicap. Even Helen Keller who was both deaf and blind went on to a very satisfying life. I can’t imagine being both blind and deaf! Don’t think it is the end of the world if tragedy strikes you in this regard. The Lord gives us the strength to cope. In some ways I think my life is even fuller now than it would have been if I had not gone deaf so many years ago. If nothing else it gave me a good dose of humility. (ha)

7) What haven’t I asked that is important to you to talk about?  

Being that your blog is primarily about seniors and retirement the one thing that still needs mentioning is the number of seniors who lose their hearing and do nothing about it. That is truly tragic when there are so many aids available. Let me give you some statistics about that. About 20% (one in five) people who are deaf were born deaf. They are known as pre-lingually deaf. 80% were like me and went deaf later in life. About 60% of that 80% went deaf after the age of sixty. In other words the largest group of deaf are senior citizens. Unfortunately the majority of this senior group won’t seek help. They for the most part simply slip into the background of life.

If I were to give any advice to family of these seniors it would be to get the person with hearing loss help even if they insist they don’t want it. Get them a captioned telephone, Teach them how to turn on the captions on their TVs. Get them to an audiologist to see if hearing aids are possible. Get a book and teach them some signs. Don’t let them simply go off on their own. When you have family or other group gatherings make sure that notepads are strewn around the area and encourage everyone to use them to “talk” with the hearing challenged person. When the group is having a discussion assign someone to write notes about what is being said. Keep the person involved. Just don’t let the person drop out of everyday life! That is a tragic way to end their years and totally unnecessary.

This post is longer than normal, but his thoughts are too important for me to edit them to make them shorter. His feedback is about deafness but applies to anything that holds us back or keeps us from trying something. As he notes, we all have some form of handicap to deal with but life goes on.

My deep appreciation to RJ for the time he took to answer my questions. My deep admiration for his forthright approach to living a satisfying retirement no matter what life throws at him.


The blogs of his that I read on a regular basis are RJ's corner and RedLetter Living.

22 comments:

  1. Outstanding blog, here. My thanks to Bob and RJ. While my definition of "hero" doesn't apply here, I still appreciate RJ as one gutsy, no-quit kind of guy, despite likely times of despair and extreme frustration.

    Though I am not of a religious ilk, I have to say that both of you are a blessing to us all. Thank you.

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    1. A gracious comment...thank you Steve. I've always appreciated RJ's blogs. He takes no prisoners in his "calling out" what he sees as wrong or pig-headed or just plain stupid. Obviously he approaches his disability the same way....head on.

      You may not agree with his politics, but it is hard to not salute his attitude toward living.

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    2. Thanks Steve for your gracious comments too. I know you are a regular on both our blogs and we both value your comments. I know enough about you to know that given your experiences in life you are a hero to me.

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  2. I second Banjo Steve's sentiments! RJ you are one amazing and inspiring guy. Thank you also for so openly sharing what you deal with daily. The first step to understanding is communication. Things that most of us take for granted daily that you have moved past and compensated for...very courageous. Also, the motivation for others suffering hearing loss to do something constructive about it and not withdraw. I am sure that would be the easy thing to do. I am also sure that if people don't know that a person suffers hearing loss, it could easily be misconstrued as lack of caring what the other person said, etc. Again, thank you!!! You are indeed a blessing to us all as Steve said.

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    1. Hi Linda. It is nice to talk to a fellow Hoosier. From your past comments I know we have a lot in common. Yeah I agree that communications is critical in so many things we do. That is what I miss the most about deafness. It is much more challenging to keep that up.

      I hadn't thought too much lately about all those deaf seniors out there that are tragically letting life slip away from them. The last segment of the post surprised even me and maybe brought out a new crusade for me to get involved in. (as if I don't have enough to do already).

      Your last sentence about being construed as lack of caring is indeed what happens. I can't tell you how many times I have turned around to see a frown on people's faces. When I quickly tell them that I am deaf and might not have heard what they say their face changes to one of embarrassment which I quickly try to squelch.

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  3. Actually, I don't find RJ to be a "take no prisoners" type of blogger at all. I find him quite thoughtful, a rarity today. Sometimes I agree with the issues he's raising, sometimes I disagree, but regardless, I appreciate and enjoy the opportunity to engage in sincere dialogue without fear of receiving a rant in return.

    There is very little in life that is purely black or white. Life is really more about shades of gray. Those bloggers that recognize that are a joy to follow.

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    1. "Take no prisoners" in the sense that if he steps on toes, maybe you should move your foot. But, yes, he allows thoughtful discussion and responds in a reasoned manner. Some of those who leave comments are rather belligerent but he never rises to the bait.

      Life is only black or white among those who are color blind.

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    2. Tamara, its nice to see that you think I have some smoother edges than Bob sees (ha). Like my hero Will Rogers I try to treat everyone with respect. Ranting does nothing other than to stroke the ranter's ego. But I also like to be known as having an sharp edge once in a while. I don't know if I can have it both ways but I am sure going to try....

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  4. Bob and RJ this is a great post. At first I was not going to read this because it didn't really relate to me exactly. After getting past the first paragraph, I realized this is about more than just being deaf. It's about living with limitations and overcoming them. I was diagnosed with RA a few years ago, and there are good days and bad days, and very bad days. You can still live a very rich life even with certain disabilities. RJ is living proof of what one can accomplish with determination. I expect that my condition will get worse as I age, but I'll manage. When I need to rest and take a break from everything, I cut off the noise, take a day off from work and relax. Keep these kinds of posts coming. This was extremely helpful!

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    1. I'm glad RJ's story wasa able to draw you in. This post has very little to do with hearing. It has to do with dealing...dealing with what life throws at us.

      Rheumatoid Arthritis has plenty of its own challenges. Stay strong, Gail, and thanks for your comment.

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    2. Gail, I'm glad you found value to the post. When Bob asked the questions I was not sure how to respond so, as usual, I pulled out the stops and gave it my all. (that is kind of my motto I guess) Yeah, rheumatoid arthritis is a tuffy but nothing that can't be overcome. I am suffering from arthritis more frequently these days but I'm sure it is nothing compared to you. I would like to hear your story sometime too.

      As Bob said we all face our challenges in life. It is how we deal with them that is the most important. Just don't let things get you down too much; there is a lot of life out there to be enjoyed if we keep the right attitudes.

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  5. This was great and insightful. My compliments to both of you for sharing this important information. It's always a 'There but for the grace of God' kind of thing isn't it? You have made this much less frightening.
    Thanks,
    b

    Oh...by the way, I had to share a funny story about my father-in-law. He's now 94 but started losing his hearing about 10 years ago. At first we called it 'selective hearing' because we felt he just tuned us out. Finally when he got hearing aids about 4 years ago we knew we were right. If he shows up to a family gathering without them you know he's chosen to ignore you! You have to laugh or... well, you just have to laugh!

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    1. Sounds like my 89 year old dad. He only puts in his hearing aids for family or doctors. Even so I'm never sure if he has them turned on.

      I have to keep reminding myself he isn't ignoring us...he just can't hear us very well.

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    2. Barb, you are not supposed to be giving out these types of secrets but I did the same thing myself. I didn't take my hearing aids out; I just turned them off. Sometimes that makes family gatherings and such much more pleasant. (ha)

      Even though it took 6 years it is great that he finally got some aids. As I and Bob's wife Betty can tell you they are far from perfect but without them we would be worse off. This speaks of the old saying "can't live with them, can't live without them"...

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  6. A good friend of mine read this post this morning and was duly impressed with RJ's approach to a life problem. She asked a follow up question that I couldn't answer, so I am throwing it out to anyone who might be able to leave a comment that will help her.

    She wonders about folks who go through life with speaking issues, meaning they have problems with speech due to either a physical or mental issue. In her case a friend of the family had the vocal chords ruined during an operation. The result is a speaking voice that makes communication very difficult. I gather it has rendered them nearly mute.

    She was wondering if anyone knows of an organization, like RJ's ALDA, that provides support and help to those who suffer from a serious speech & communication disability.

    Please leave a reply and I'll pass on the information.

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  7. I am a huge fan of RJ's and the way he thinks about the political scene.

    It's hard to admit that I get so frustrated with my husband's declining hearing sometimes. We've been together for 42 years and despite knowing me well he makes the oddest guesses of what I might have said. Some of the misinterpretations are funny and some are highly...well, insulting that he thinks I said something so dumb--lol.

    Hearing aids, while definitely helpful, do not correct his hearing back to normal, especially in restaurants

    RJ has me thinking that maybe we should take a sign language course, rather than one to refresh our Spanish.

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    1. My wife wears hearing aids and I still find myself having to repeat what I say if she isn't within sight of me. I get frustrated which is stupid and unproductive. It isn't her fault!

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  8. Thank you to both of you for this very insightful and educational post. I have known some deaf people in my life (both born deaf and who developed it later in life) and it's always interesting to see the different ways that they, and you, RJ, have reacted to this problem. Some use it as an excuse, some just deal with it, try and fix things, and go about their lives. It's encouraging that you have learned to live with it and developed ways to deal with it.

    My mother has been going deaf for years but for various reasons would not or could not admit it. We all got tired of having to repeat things, and she would say, well I just didn't hear you. My brother finally convinced her to go to an audiologist a few years ago, and sure enough, she had lost quite a bit of her hearing. So she now wears hearing aids, which help quite a bit. She, too, uses them judiciously, and will turn them off on occasion. LOL

    Because of my exposure to loud music growing up, I fear that one day I will also lose my hearing. It's refreshing and encouraging to hear from you, RJ, that it won't be the end of the world. Thank you for your honesty and openness about this!

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    1. Since I spent the first 12 years of my radio career wearing very loud headphones while on the air and going to lots of rock concerts, I have certainly lost some of my hearing. I will need hearing aids at some point...sooner rather than later if my wife is to believed.

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  9. What a great post. Thanks to you, Bob, for asking open ended questions, and to you, RJ, for your willingness to share part of your story. Many of us take so much for granted. We are not always sensitive to the obstacles that day to day life presents for people with a whole variety of disabilities.

    Years ago, I was in a car accident that crushed my collar bone. For several months my right arm and hand were not functional. During those months, I became very aware of how the world is set up for people who have two hands, and beyond that, for people who are right handed (as I am). I had to spend so much time and energy thinking about and performing ordinary tasks like brushing my teeth, taking out the trash, getting dressed, opening doors while carrying something, driving, eating, bathing, and so much more. It was exhausting!

    Another experience that brought home to me how much I take for granted was living overseas with a child small enough to be in a stroller. The stroller was pretty useless in places with no sidewalks or uneven sidewalks, or places with no ramps or elevators. I often thought about a friend of mine who uses a wheelchair and how restricted her mobility would be in some of the places I was living.

    And of course, these lessons I learned were quite insignificant in terms of my own life. I knew, for example, that I would eventually regain the use of my right arm and hand. But it did make me look at the world in a different way. I'm sure this article will do the same for readers.

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  10. Hi RJ

    Thought provoking and awe inspiring interview! I'm struggling with hearing loss also, though obviously not as severe as yours. When my current crazy schedule comes to an end in a few days I will be back with more comments and thoughts and questions.

    This is an extremely important subject!

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    1. Betty, thank you for the kind words. If you go to my blog at http://rjscorner.net and click on the "About Life" button at the top of the blog you will find a category entitled "Coping in the hearing world". That has several posts about being hearing impaired. I don't post in that category too often but it does get some new ones. Especially if a reader is interested. I am glad to help you wherever I can. As you say I have been there and done that....

      RJ

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