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Wishing Backwards: 10 Things I Wish I Had Learned Sooner

In advocating, Audiologists, captions, Coping Skills, deaf, Hearing aids, Hearing Loss, Life, Lip Reading, Partially Deaf, SayWhatClub, Speech Reading, Support on April 1, 2017 at 3:57 pm

By Michele Linder

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SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.

A fellow Connector asked, “What kinds of things should you have learned sooner?

For me, this question takes me back to childhood—growing up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.

I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.

That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?

On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observation.

10 THINGS I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after. I didn’t even know I could advocate for myself, nor was I aware I should.

I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.

I went through my entire public school education without many people knowing that I had a severe hearing loss. I was a good faker and I had a super power (I wasn’t even aware of) where my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.

2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me. Enough said.

3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss. I worked through many things to become a well-adjusted adult, but it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.

When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.

Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.

Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.

However, what I discovered to be most effective is to simply tell people what I need from them.

Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.

Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.

4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors. This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.

Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.

If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?

5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids. My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.

6. I wish I had found a support group sooner. I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.

At the end of each and every hearing aid trial, I would ask my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not equipped or even knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.

SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap, because there’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.

7. I wish I had been more confident in my hearing loss sooner. As a young adult, I let embarrassment and awkward situations deplete me. Had I not been a young mother (I had my first child at age 23), or an adventurous soul, I might have suffered more isolation and depression than I did. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.

8. I wish that I would have recognized sooner all of the things I’m really good at because of my hearing loss. I credit SWC for shining a light on how really good at coping I was, even as a kid left on their own, and I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.

9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary. Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand and would panic if a repeat was no help. This was a really hard thing for me to overcome, and it’s the same for a lot of people with an invisible disability.

10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything. When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.

I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day—I still have days where it’s just better if I stay home, and likely always will—however, I don’t think I would be as far along as I am if I hadn’t volunteered with SWC and as a captioning advocate. I started out volunteering because I wanted to pay forward what others in SWC did for me when I was down, but I soon realized I was helping myself far more.

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The 2016 SWC Boise Convention: Keynote Speaker

In advocating, SWC convention on October 7, 2016 at 3:10 pm

by Chelle Wyatt

Richard Pimentel was the keynote speaker for the 2016 SWC Boise, ID Convention. The convention crew was honored to have him speak and attendees were excited, especially after watching the movie Music Within depicting his life and his work toward the American’s with Disabilities Act (ADA). So much of what he said I didn’t want to paraphrase so where the text appears in blue, it’s directly quoted from his speech.

A short bio of Richard’s life can be found on the website where he works:

“Richard Pimentel was pronounced dead at birth in the delivery room. In a miraculous turn of events, he lived. His mother, who had experienced three miscarriages before his birth, left him in an orphanage, unable to come to terms with his existence. After his father’s death, he was raised by his impoverished grandmother and deemed “retarded” by a school guidance counselor. He never spoke a word until age six.
After his mother abandoned him again for a new boyfriend, Richard was left homeless and roamed from friend’s homes to his father’s old workplace, a strip bar. He lived and slept in the dressing room. During these hard times, he managed to win two national high school speech championships and was offered a college scholarship by College Bowl founder, Dr. Ben Padrow. Richard arrived on campus only to hear Dr. Padrow tell him to come back when he had “something to say.”
Richard followed Dr. Padrow’s advice and quit school. Soon after he was drafted to Vietnam, where he survived a volunteer suicide mission and became an acknowledged war hero. During his brief celebration, a stray bomb exploded in his bunker and ravaged his hearing. Not only did Richard lose his hearing, he developed tinnitus, a constant ringing in the ears. The government dismissed his dreams of college and public speaking, insisting his fate was one of insanity and rage due to his condition.”
Richard started his speech with humor, talking about his past and growing up in Portland, Oregon…. Being poor enough to be on the “relief” program (before food stamps) and getting the worst peanut butter ever which came in a can and had to be shaken with a paint shaker to be mixed. There was no money for a college education so he took up a government program called Vietnam, were a college education could be obtained after government service.
Several times we laughed as he talked about his service years leading up to a tense moment when his small unit was surrounded by the enemy on a suicide mission. Decisions had to made and they made it back to camp where they were holding funeral services for the 5 men who were expected to die.

The men were awarded a night in the beer bunker for their survival. Ten hours later a rocket was exploded on top of the beer bunker while they were still in there and the bunker imploded. “What did the implosion do? Well, the worst part of the bunker, where all the air came together, air at high velocity in a confined space, it literally blew the eyes out of the person who was there. All the rest of us got traumatic brain injuries. Even death.” It caused him to lose 70% of his hearing, losing the high frequencies, a classic ski slope loss.
After the explosion, he had to learn to walk, talk and even feed himself again-which he said he mastered almost immediately. Once he was getting around again, he wanted to go to college and the government refused.

You know what the rehab person told me? He said: Well, I can’t spend government money on sending you to college.

I said, why not?

He said, because you are deaf!

I said, what? Those counselors have no sense of humor. I said, I’m not deaf, you moron. You are talking to me.

He said, no, no, you are not totally deaf. If you were totally deaf, you’d be fine. I’d just send you to Gallaudet and make a good deaf person out of you. But you lost over half your hearing. You don’t have any hearing in the upper register. You got good hearing in the lower register. So you know what you can’t hear?

I said, what can’t I hear?

Well, you can’t hear the beginning and ends of all consonants. They are all going to sound the same to you. Your T’s and your Z’s and your V’s, they will all sound the same. He said, you know what you hear?

I said, what?

Your vowels. You hear your vowels: A, E, I, O, ooh. But not your Y’s, not even sometimes.

I said, what do I do? Do I learn Sign Language?

He said, you don’t want to learn Sign Language. The only people who do Sign Language are the deaf, and they don’t want to talk to you!

I said, well, what do I do?

Well, if you don’t hear consonants but you hear vowels, you only have two choices in your life  either learn to read lips or you move to Hawaii!”

The counselor went to explain how tinnitus would keep him from learning as well and possibly drive him crazy. His hearing loss and tinnitus would make him angry, violent and foul mouthed.
Moving on, the counselor asked him what he wanted to do in life and Richard said he wanted to be a public speaker. The counselor told him it wasn’t possible and pulled out a big book of disabilities. The book listed careers people could do with their disability, under deaf was listed “shoemaker”. The counselor moved on to traumatic brain injury and pointed the list of options out to Richard and asked do you see “professional speaker” listed? No? Then you can’t do it.
Richard decided to prove him wrong. He learned to read lips and went to college anyway. There he met Art Honeyman who had severe cerebral palsy. Most people couldn’t understand Art but Richard understood him perfectly. It turned out Arts speech lined up with Richard’s audiogram perfectly. Art had high IQ and Richard often translated for him. Then Richard wouldn’t be able to understand the person talking to them so Art would translate for him (Art could hear). “We were the strangest pair you ever saw in your life!”
Art was in wheelchair and the majority of public places were inaccessible in 1970. As an example, the college dorms and bathrooms were only accessible if Richard or someone else carried Art over their shoulder. They became good friends.
On his birthday in 1972, Art called him at 3 am to go out and celebrate with pancakes. He needed Richard to help him dress and carry him and his wheelchair down 3 flights of stairs, then push him 8 blocks to the restaurant where he had to pull him more steps to get inside. Richard figured why not and did it.
The waitress had come up and never seen anyone like Art before. She said the cruelest thing I ever heard in my life, cruelest thing I have ever heard in my life. She went to Art and she said, you are the ugliest thing I have ever seen in my life. Do you expect me to bring you food? And I don’t know how you are going to eat it, like some pig in a trough. You are going to make us all sick. So I won’t serve you. Get out. She said, I thought people like you are supposed to die at birth.
I looked at my friend, Art. He’s my best friend. What’s he going to do? How’s he going to react? Is this going to ruin his life? Remember, he’s a genius. But he’s better than a genius  he’s an evil genius! And Art turned to me, and I will tell you exactly what he said. He looked at me and said, Richard, why is she talking to you that way?! You don’t look any worse than you normally look!
Lord knows, I wanted to say it to him before, but he was my friend. I said, she’s not talking to me, she’s talking to you!

He said, there’s only two of us; how can you be sure?

I said, I think she’s trying to take me home and trying to get rid of you.

So we got into this big argument about who she wanted to date, and that made her really mad. You can either leave, she said, or I can call the police.

And I said, call ’em.

And they came. And the police said, you can either leave or you can go to jail. And Art said the words that changed my life: He said, I want to go to jail. Then he said, and Richard wants to go to jail too.

I said, no! I don’t want to go to jail. I want to get a job with a big American company.
I could have left. Art wouldn’t have blamed me. I could have just got up and said, I am not going to go, and they would have taken Art to jail. But a few things occurred to me.

First intellectual reason was, if they didn’t want me to commit civil disobedience, why then did they require me to read Thoreau?

The second intellectual reason: I didn’t go to Vietnam to protect people I don’t know to come back to find the people I care about have no rights.

The third one wasn’t intellectual, okay? How the hell are they going to fingerprint Art? This I got to see. This will be worth going to jail for.
They were jailed and appeared before the judge who found them guilty under the “Ugly Law.” Portland Oregon had an Ugly Law. Richard realized he was living in a time of disability apartheid, this seven years after the Civil Rights were enacted. Art and Richard continued going to places there weren’t welcomed and were arrested again and again.

Why? Because we believed since they were enforcing an absolutely unjust and unfair law, that if we made them do it over and over again, eventually they would have to change the law out of embarrassment. I started a mission in 1972 that ended 20 years later with the passage and eventual enforcement of the Americans with Disabilities Act. It was a tough road.
What I want to share with you is this. You know you are going to look at a lot of the ADA stuff, and you are going to see — oh, you will see Justin Dart and all of these people with wheelchairs, you are going to see people climbing up the steps of the Capitol. You are going to see such dramatic things, and you know what you might believe? You might believe by looking at that the only people who were involved in this were folks in wheelchairs, and the only issue they cared about was bathrooms, and stairs, and doors and ramps. But I want you to know, there were a lot of other people involved in the movement. People who were deaf and had been deaf for generations. And then they had people like me, the recently hard of hearing. I remember when I first started, trying to become a leader in the disability community, I was criticized for not being disabled enough. I was criticized for not being deaf enough. I was criticized for not doing Sign Language.
Richard went to share his experiences in helping people get accommodations, Deaf and otherwise. While standing up for a Deaf employee who’s supervisor wouldn’t allow her an interpreter (she read lips too well) during a disability presentation Richard was giving at a big company earned him the respect of Deaf culture.
When the disability community first started with ADA, it was a very physical disability community. Sensory was not a big deal, except for blind. They didn’t think that retardation should be included. They didn’t think that mental illness should be included, or that learning disabilities should be included. And it was the deaf community that said, we need inclusiveness.

I want you to know right up there with all the folks getting all the photography going up the steps, there were a number of folks who were Deaf  and folks like me, only hearingimpaired  who helped put the ADA together. You folks are very much a part of that.

The deaf community, along with all the other communities in the disability field, helped put the rights together. And we didn’t do this together so we would have lawsuits. You know what we did ADA for? The simplest thing in the world. We did it so that people with disabilities could have a spontaneous life. You don’t have to call ahead to know that you can get somewhere, or that someone will be able to talk to you, or that you will have another way to communicate available to you. We want what so many people without disabilities take for granted the ability to have a spontaneous life. This really is all it comes down to. And we ended up in 1990 passing that.

Look for more of Richard’s work in a program he’s working on for parents of children with disabilities. He wants them to know a disability does not define anyone and that they too can be successful in today‘s world. He will start in the Boise area, where he lives, and wants to take it nationwide.

Who you are is important. Every decision that we make about anyone should not be based on what they have but who they are. Disability is not a 4 letter word. Recognizing a disability is important so everyone knows how to advocate for themselves. Tell people in a kind, positive and creative way what you need.

His final words to us was for children with disabilities but I believe it applies to us all:

The shortest distance between where a young person with a disability is and where they want to be is a road that is illuminated by their own dreams, not by the dreams that we have for them, no matter how much we know, no matter how much we care, and no matter how much we love them. Let us enable them to find their own dreams, their own music, and their own definition of success. That’s the best advice that I could give anyone who cares about someone with a disability. We didn’t work all of these years  and I’m old now  to help ourselves. We worked to help this new generation of young people with disabilities to live a spontaneous life.

He received a standing ovation from our attendees.