January 29, 2018

Dealing With A Real Life Disability

Based on the response to the post, Do You Feel Invisible, I thought it would beinteresting follow up to recycle this one from almost 5 years ago about blogger and regular reader, R.J. Walters. This post remains in the top 10 of all articles read on Satisfying Retirement so it must continue to resonate with folks.



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 over the years. 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.




20 comments:

  1. Great post. I've actually thought about learning Sign Language just in case.

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    1. That is probably not a bad idea. Even if not needed for someone in the family, you will know someone who struggles with a hearing loss. Being able to communicate would be gratefully appreciated.

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  2. Very interesting guy, Bob. Enjoyed his story very much, and it is timely since many of us, as you pointed out in the article, will be facing a disability of some sort in our lives. BTW, our daughter chose to learn ASL years ago since she had some deaf acquaintances. Always love to watch her converse with deaf folks, and I think they appreciate her being as proactive as she was to learn it.

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    1. Our church has someone sign the sermon each Sunday. Occasionally I will watch her and marvel at her fluid movements. Sometimes it reminds me of the beauty of the movements of a hulu dancer in Hawaii. Hands can convey so much.

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  3. Bob, I am humbled by the fact that this interview is still in the top 10 list even after 5 years!!

    Thank you for your continued friendship over all the years and thanks for including RJsCorner.net on your bloglist at the right side of your homepage. About one-fourth of my traffic comes from your site.

    I continue to have a "satisfying retirement"and It gets better and better even after 18 years...

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    1. I am happy to call you my friend and am pleased you are doing well. Your story in this post continues to resonate and is certainly worth this re-post.

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  4. I've heard that the loss of hearing can be worse in many ways that the loss of sight because it tends to be isolating. It seems that he has handled it very well. I've followed RJ's blog for awhile and I consider him to be a cyber friend.

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    1. If I had the choice I would pick deafness over sight. Reading is too important to me to have to rely on audio books.

      Yes, RJ is an excellent example of someone who is limited but not disabled.

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  5. I retired in July. I have a 13-year-old son who was born profoundly deaf but he has two cochlear implants. The loss of access to spoken language is unbelievably isolating for people of all ages. It's crazy, but Medicare will provide cochlear implants but not hearing aids! For us youth-challenged people, cochlear implant surgery is normally a one-day procedure. I read RJ's blog and have often wondered about his story.

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    1. Medicare's policy toward hearing aids is stupid. But, hey, they will pay for the batteries!

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  6. Excellent information, thank you both! As I approach 70 (on my own) and retirement before Fall, it did ring a bit for me as I am not hearing low voices and missing much of what daughter and her husband say. I will venture to the audiologist for further action. I appreciate the nudge and feel Woosie compared to what RJ and his family have conquered.

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    1. His story is a good reminder, and firm nudge, to protect your hearing if you can, and work with what you have, if you can't.

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  7. I have had my hearing tested a half-dozen times over the years as I cannot hear things said. Mostly, I have to see lips to understand many things. Of course, they put me in a little room and let me hear meaningless meaningless sounds and declare my hearing is above average. I watch lips for words not noises. I often can hear the person just not make out what is said or one important word. I can hear fluorescent lights! But, not people talking under them. I have tinnitus continually, however it is only white noise. Ear infections plague me, but since I am 71, hopefully my hearing will be okay, no worse than it is now as long as I can live. I would rather lose hearing than sight. Right now, I am having problems that signal macular degeneration, so who knows what is in my future.

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    1. I agree with you about sight versus hearing. I imagine RJ would, too.

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  8. Thanks for re-posting this, Bob. It's very timely for me because I was just diagnosed today with hearing loss -- probably a side effect of the chemotherapy drugs that kept me alive twenty years ago. I particularly appreciated RJ's message that we seniors need to get past the blow to our sense of self and take advantage of available help. My audiologist pointed me toward a recent study at Johns Hopkins that found that those who ignore their hearing loss are more likely to develop memory loss and cognitive problems. -Jean

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    1. I am sorry to read of your diagnosis but glad this post ran when it did to give you a sense of what is possible. To ignore any problem is dangerous, but hearing is something that does have major effects on all of the aspects of life.

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  9. I am impressed to read about how well RJ has proactively coped with his loss of hearing. Hearing is so important to social engagement, and social engagement, as we know, is one of the keys to a satisfying life. Fortunately, the range of technology now available can make deafness a less isolating experience. Most people who lose their hearing with age will lose it gradually and partially, and therefore hearing aids can be of huge benefit to them, just as glasses are helpful as our vision changes. It also is important to protect our hearing throughout our lives by avoiding loud noises and wearing ear protection, as noise-induced hearing loss can combine with age-related hearing loss to make the hearing loss much worse, especially in the frequency range important for hearing speech. As seniors, we need to advocate for ourselves, by insisting upon access to everyday experiences for the hearing impaired, such as closed captioning on media, FM systems in auditoriums, signers at group events, note-takers for classes, and preferential seating for speech reading. For our own health and well-being, we also need to take advantage of hearing aids and other supports rather than letting our vanity get the best of us. RJ is a terrific role model in this regard.

    Jude

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    1. I know my career in radio hurt my hearing...those headphones I wore in the studio for 4-6 hours a day were loud!

      Thank you for the reminder of all the options that are available today. We just have to be comfortable asking for the help.

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