"Each friend represents a world in us, a world possibly not born until they arrive." Anaïs Nin

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Thursday, May 29, 2014

Wisdom of Maya Angelou

"We cannot change the past, but we can change our attitude toward it.

Uproot guilt and sow forgiveness.

Tear out arrogance and seed humility.

Exchange love for hate - thereby making the present comfortable and the future promising."

Wednesday, May 28, 2014

My Experience With Captions at the Beth Moore Conference in Hershey, PA

Beth Moore and Travis Cottrell

"It was one of the best experiences that I've had in my life to be part of the Beth Moore conference. The camaraderie between the the women in the audience was amazing and heartwarming." Terri Avis, professional captioner at the Hershey, PA Beth Moore Conference, May, 2014.

I agree with Terri! I had the most wonderful experience at the Beth Moore conference, courtesy of Drew Dillon, the ADA Coordinator for Hershey Entertainment. Drew contacted 2 captioners to provide captions for the deaf and hard of hearing whose first language is English, not ASL
The first evening, Terri Avis was our captioner, and Lori Dulls from Silver Spring, Maryland of Vital Signs LLC provided captions the second day.

When Lori began to set up the second day, she had different colors on the screen, black background with yellow texts. Terri used the standard blue and white. I'm used to the blue screen with the white texts since that is what is used at our PUC Telecommunications Relay Advisory Board meetings at the PA State Capitol Complex in Harrisburg, as well as our Hearing Loss Association of America, Pennsylvania Advisory Board meetings.

Lisa Lee Swope, a member of the local ASL Dauphin County Facebook group came to us before the conference began the second day and told us that the captions were easier to read the night before from where she was sitting 6 rows up in the stands. At first, we thought it was because Terri had used a blue background with white captions. For me, the black background with yellow captions were easier to read, a very nice contrast. 

It was suggested perhaps it was because the captions Terri provided were all CAPS. The CAPS, along with the color contrast the second day were FABULOUS!! 

I would like to offer a few tips if you decide to attend a Beth Moore Conference (or any public event) in the future:

I first contacted LifeWay and requested CART when my friend Carol Mellott told me that Beth More was coming to our area. LifeWay, the sponsor for the Beth Moore event in Hershey, provided an ASL interpreter for the small culturally Deaf community, but refused to pay for captioning for the larger population who depend on captions for access to language.

Reach out and try to connect with LifeWay (or the sponsor of the event you wish to have access to) first in plenty of time before the event comes to your area.  You will have to meet with the volunteers and coordinators and explain why you need captions. You will have to explain that by providing access to only one group of deaf people, the culturally ASL Deaf, yet refusing to provide CART for English speaking deaf and people with hearing loss, is discrimination. It's an ugly word, but that is what it is.

LifeWay does not provide captioning, nor will they pay for it at this time, though they are accountable to do so and can be sued for not providing. I didn't want to be "that person" to pursue legal action since Drew Dillion, the ADA Cordinator of Hershey Enterainment stepped up and provided access for us.

If you have no success with the sponsor of the event, then contact the venue where it is being held. Find who is in charge of "Accessibility" and talk with them. Most likely, captions won't even be mentioned on the websites because they've not yet had experience with this kind of accessibility. You will need to educate them, as well, and encourage them to add this to their list of accessible means on their websites.

If your request is turned down by both, LifeWay and the venue, you need to contact your state ADA Rights Network to intercede for you. It took just one phone call from Carol Horowitz here in Pennylvania to get the process started. She simply stated in the phone call they have 2 choices, either pay for the captioning or for a lawsuit. Captioning is not only less expensive, it is the right thing to do. The issue is "equal access".

Be prepared to explain why you need captions.

People don't realize that CART is a very real need if they don't see it in action, or the faces of those of us who need it. Hearing loss and deafness are invisible disabilities, and for years many of us have hesitated to ask for captions because we been met with hostile inquisitions as to why we don't just learn to sign like the Deaf community. Our hearing families and friends don't sign. We don't belong in Deaf community because our lives are integrated with the hearing community. Many people begin to lose their hearing by middle age, and often the loss progressively gets worse. The fastest growing population of DISABLED people today are those of us living with hearing loss. It is unreasonable to expect people who have spent their whole lives in the hearing culture, and their friends and families to learn ASL at this stage in life. It IS reasonable, however, to accommodate their request for English in text captioning.

We are protected under the ADA, and we have the right to request CART captioning, not just in our schools or where we work, but anyplace that is a public venue, and especially if money is required for entry. This is why I have been advocating all these years for open captions at cinemas and churches. We need to be visible in order to bring about access to language for our deafened community and for people struggling with hearing loss.

If more of us who need access to language via CART will speak up and advocate for ourselves, captioning will be more accessible and visible to the population. Many of us who are losing our hearing don't realize this is available to us. You will not be the only person benefitting.

There was one woman at the Beth Moore conference who was asking for an assitive listening device who shared her appreciation for the captions being available, because, even with assistive devices we miss a great deal of what is being said. As we age, it becomes more difficult for some of us to understand speech, or distinguish words because our brain can no longer "process" what it used to hear, which are speech sounds. 

I want to take a moment to thank a few people before I get to the photos:

Terri Avis for meeting the LifeWay volunteers weeks before the event and demonstrating how captions work. Also, Terri did the leg work by initiating the conversation with Drew Dillon and finding out what equipment was availabe and compatible for captioning the event.

Nancy Kinglsley for going to the meeting with us and explaining the laws regarding access for deaf and hard of hearing people. Nancy is also the chair person for our local Lancaster Hearing Loss of America Association, as well as Director for Hearing Loss Association of America - Pennsylvania Advisory Board. Nancy also put me in touch with Carol Horowitz of the Disability Rights Network, PA.

A huge thank you to our Disability Right's Network here in Pennsylvania, especially Carol Horowitz for standing up for us and being our voice.

Drew Dillon, the ADA coordinator for Hershey Entertainment for making the event accessible for deafened people whose first language is English.

Here are a few photos from the event:

This is Terri Avis setting up the blue screen with white text the first night .

Terri shares her beautiful smile before the event begins.

                                                                                        Carol Mellott and me.

Lori Dulls of Vital Signs LLC captions for us the second day.

                                            Look at those beautiful captions! This is before the CAPS were turned on.

The lovely and inspiring Beth Moore.

I did not get the name of the ASL interpreter, but she was outstanding. The Deaf people I talked with spoke very highly of her skill. 

Beth Moore and Travis Cottrell, Christian singer/musician.  

Want to know more about captions? Visit Collaborative for Communication Access via Captioning

Need captions? Ask CaptionMatch

Learn more about "who" needs captions and "why" by watching this short film by CCAC

Monday, May 26, 2014

It Is the Soldier - A Memorial Day Tribute

It is the soldier..
"It is the soldier, not the reporter, who has given us freedom of the press.

It is the soldier, not the poet, who has given us freedom of speech.

It is the soldier, not the campus organizer who, has given us freedom to demonstrate.

It is the soldier, who salutes the flag, who serves beneath the flag, and whose coffin is draped by the flag, who allows the protestor to burn the flag."

Thursday, May 22, 2014

VBS inclusive for Deaf ASL Children (Mechanicsburg, PA)

Please feel free to forward the following message:
Vacation Bible School (VBS)

For Deaf Kids too!

Dates: 8/4 – 8/8

Time: 6pm-8:45pm

West Shore E. Free Church
is inviting
all deaf children
ages 4 through completed 5th grade
to attend VBS.
Signers and interpreters will be working throughout the VBS environment to make it completely accessible.
This is an integrated concept.

Register online:  www.westshorefree.com or call 717-620-2330 ext. 162
Registration BEGINS June 25 and ENDS July 31
Registration is also accepted each night of VBS.

Fun, games, crafts, snacks, skits, music, and of course, Bible lessons


West Shore E. Free Church, 1345 Williams Grove Road, Mechanicsburg, PA 17055

Tuesday, May 20, 2014

"Let. Them. Go." by Lana Ryder Rosner

My friend, Lana Ryder Rosner (click the link to her blog below this post) is not only wise, she is able to put her wisdom into words that can be understood by others. I love how she expresses herself here, and I'm sure many of us have been in similar situations.

"As far back as I can remember I have believed that we can all get along, even if we don't agree or have very different opinions or perspectives about truth. We can choose how to handle conflict, reaching out in love and forgiveness, reconciliation or not. We always have choice. Long after my parents divorced I chose to maintain the role of peacemaker between them. By the grace of God and willingness of both my parents, the child's heart within me was blessed beyond measure to see them eventually being led by their hearts instead of pride and ego in their relationship. My dad visited my Mom in the hospital when she had her neck surgery when she was 80. My mom went and checked in on my dad when he was not well and living alone when I was away and couldn't. She even played two of his favorite songs at his funeral. You know, any of us can make mistakes and errors of judgment in any relationship, miscommunicate, even consciously(or not) albeit foolishly commit acts that cause someone else hurt or distress. As we grow, age and mature, life gives us limitless opportunities to learn wisdom, grace and patience towards others and ourselves. Forgiveness, grace and mercy are mostly learned in the sometimes fiery crucible of personal relationships. We can extend forgiveness, still care about someone and yet be smacked in the face with the fact that we need to let them go, to gently and lovingly remove the conscious connection that allows them access to our heart. I've been a slow learner in discerning courses of actions between healthy self-love and loving others as we love ourselves. Doormat or doorway? As one being in the healing profession most of my adult life, I confess it's sometimes taken me too long to realize the difference. Not always, but enough times that this meme shared below from Crystal Andrus wrapped its energy around my heart and soul early this morning, causing me to acknowledge it fully. Bless them, send them light and love, and Let. Them. Go."

In case you can't see the Meme and photo that Lana is referring to, it says:

Keep people in your life that truly

Love you

Motivate you

Encourage you

Inspire you

Enhance you

and make you happy.

If you have people who do not of the above,


Check out Lana's blog here: http://www.soundwisewoman.blogspot.com/?m=1

Thursday, May 15, 2014

My Experience and Tips Regarding Hearing Aid Dispensaries

Over the years, I've gone through at least 4 pairs of hearing aids. I've always had good experience at the audiologists office, until last week. What we experienced should not happen to anyone. You'll find a tip or two to help you here if you are in the market for new hearing aids, or getting a pair of used ones refurbished for yourself.

I was given a pair of barely used hearing aids from a generous heart who now has a pair of cochlear implants. I was thrilled the day they arrived, happy to move on from my 10 year old aids,  (which were also pre-owned and came to me courtesy of the Coos Bay Lion's Club in Coos Bay, Oregon).

Fabulous Husband made an appointment for me over in Lancaster with an audiologist to get the hearing aids fitted and reprogrammed for my particular hearing loss. When he called and inquired about the fee for reprogramming a pair of hearing aids, they told him it would cost $200.00.

We ran through the standard hearing test, I learned nothing new. However, I did ask if the hearing aids worked. The audiologist told me we would not know until the ear molds were made.

I had to have custom ear molds made with vents to keep the air flowing into my ears. I have chronic ear disease and this is a must. This pair of ear molds cost Fabulous Husband $175.00 on the spot.

When the ear molds were ready, we went back to begin the process of getting the donated hearing aids reprogrammed. We were absolutely ecstatic that I would soon be hearing better than I have been been with my old hearing aids. I have them turned all the way up these days. I desperately need more volume because I'm loosing clarity of sounds. I'm not able to distinguish words or sounds as well as I used to.

When we arrived, we were told that we had been quoted the incorrect fee for reprogramming the hearing aids. It would not be $200.00 for the pair, but $200.00 per hearing aid.  to reprogram both would be $400.00.

I saw a different audiologist at this appointment. He was very kind, and genuinely tried to do everything he could to get the hearing aids working. One did not work at all and would need to be sent in for repairs. That would cost an additional $200.00.

We tried the other hearing aid. It was awful. I could hear myself, it was fuzzy and barely could hear anyone else. The audiologist tried everything he could think of.  He was on the phone with the company helping with downloading the program, but nothing was working. I was beginning to think they just didn't believe me about how bad these were sounding. My old hearing aids were far clearer than this newer one.

The audiologist stepped around from behind the desk and asked if he could listen to one of my old hearing aids. I could tell by the surprised look on his face that he was not expecting such a difference between my old hearing aid and this much newer one. He picked up the phone and told the person from the company that makes these new hearing aids that my "about 15 years old" hearing aids were better than these newer ones.

It was suggested we send that hearing aid with the other one to be repaired, at a price of another $200.00.

The tally at this point for my donated hearing aids would be $200.00 repair per hearing aid = $400.00

Reprogramming each hearing aid would be $200.00 each  = $400.00

Hearing aid molds = $175.00 (they later refunded half of our money for these when we were in dispute)

Total = $975.00

No thank you. btw... those ear molds were NOT needed to test the functionality of the hearing aids. So we now had a pair of ear molds that were not going to be used at all. We spent $175.00 for nothing.


As we were preparing to leave, they told us that a representative from Starkey Hearing Aids would be visiting their office the following week.  They suggested that the ear molds would work well with those. We thought it would be a good idea to at least check out the other technology.

The Starkey representative was VERY informative. I am losing my ability to understand or distinguish sounds I used to hear. My left ear has the same amount of loss as my right ear, yet my right ear distinguishes sounds better, although not perfect, and I have lost a serious percentage of that ability. The scientific name for losing the ability to distinguish sounds is "phonetic regression."

With a new pair of hearing aids and a training program, I would be able to train my brain to "hear" better and more accurately than my current condition.

At this point, we were told by the Starkey representative that I could try a demo pair of hearing aids. However, that was not the case. That was only if we paid in full for a new pair.

Fabulous Husband was told about a year ago that our insurance would reimburse him $800.00 per hearing aid. AFTER the purchase.

This day, we were told hearing aids are not covered because the online form posted on the insurance's website had the box unchecked. Fabulous Husband had the receptionist call the insurance company and they told her that hearing aids aren't listed on the website because they are a supplement. How many people have looked online to see if hearing aids are covered by insurance only to see they are not... not realizing that there is a supplement program and they must call the company in order to access the program.

Insurance companies need to be more forthright regarding hearing aid coverage, AND they need to provide coverage BEFORE people spend their retirement, or family vacation money for hearing aids just so they can hear and function in the hearing world.

DEAF TAX.  We have to pay a very steep price to take part in the hearing world, to experience what hearing people take for granted..daily.. (I'll step off the soap box now and get back to what happened next).

The cost of a NEW pair of hearing aids functional for EVERY part of my life would be $6,000.00.


So, that was that. No new hearing aids for me. We just spent and enormous amount last December flying home when my mother unexpectedly passed away. This is an expense I don't want to saddle my family with right now.

The ear molds are totally useless. They did refund us half of the money we spent for them. I am now the owner of a pair of absolutely useless ear molds.

Fabulous Husband had quite a bit to say over this entire process, how we were quoted one thing, and it end up being much more with each added $200.00 as we moved from one item to the next. He was also very upset that the first audiologist did not test the functionality of the hearing aids and told me they couldn't be tested without the ear molds. That was not true; they can test the functionality without the ear molds.

In addition to all of this, Fabulous Husband lost 2 days of work over this entire process.

I contacted the lovely person who donated these hearing aids, and she was "shocked, just shocked." They were in working order before she shipped them to me. She requested I return them so that she can send them to an organization that fixes and donates them to others who need them. I love that!

After our email convesation, I learned that someone from the audilogists office called and said they would reprogram the hearing aids and whatever else we needed for $200.00. That window is closed and quite frankly, that is not a hearing aid dispensary I ever want to return to because I have lost trust with them through this whole process.

If you need new hearing aids, be sure to ask your friends which audiologist they recommend. I wish I had gone to the audiologist in Mount Joy, PA, Dr. Debbie Frey,  who had helped me 2 years ago and from my symptoms knew I had another problem, and it wasn't related to my hearing loss. (read about that here: http://xpressivehandz.blogspot.com/2012/10/i-went-to-get-hearing-aids-and-found.html) She was booked up and I didn't want to wait that long to see her. 


1. Go only to an audiologist that comes highly recommended by someone you know. Don't go to just a hearing aid dispensary, but go to an actual Doctor of Audiology. It was an astute audiologist, Dr. Debbie Frey who quite possibly saved my life.

2. Call your insurance company and don't just ask about hearing aids.. ask about the supplement program for hearing aids.

3. Ask for pricing BEFORE you make the appointment, and hold them to that quote. If they begin to tack on fees for every thing through the process, tell them you'll think about it and leave. Go compare prices.

4. Never go to the audiologist alone. Take a witness with you and have them jot down notes for you. They may come in handy later.

5. If you find a great audiologist, stick with them... even if you have to wait weeks, or longer to see them.

Wednesday, May 14, 2014

HLAA-Lancaster Chapter Meeting Tueday, May 20th, 2014

Our next Hearing Loss Association of America, Lancaster County, PA meeting is:

TUESDAY MAY 20th 10:00 AM




CART and loop provided

Sudan Khan, PA Captioned Telephone Relay Service Outreach Coordinator will be presenting Making Captioned Calls via Phone, Cellphone & Computer


Thursday, May 8, 2014

Does Closed Captioning Still Serve Deaf People?

Lauren Storck of CCAC posted this video on Facebook. As stated in this video, "360 MILLION" deaf and people with hearing loss around the world matter.  Watch this 10 minute video by Gary Robson and experience why captions are so important, and the new FCC law.

If you need captions, like I do, click the "YouTube" button and once you are on the YouTube page, click the CC button.


Monday, May 5, 2014

Joni's event hard to hear for some - LancasterOnline: Letters to the Editor

Nancy Kingsley, Director of Hearing Loss Association of America, Pennsylvania State chapter submitted this excellent letter to LancasterOnline Editor which was published Thursday, May 1st. Nancy helped me with getting captions provided at the Beth Moore Conference this past weekend.

Joni’s event hard to hear for some - LancasterOnline: Letters To The Editor
Posted: Thursday, May 1, 2014 9:25 am | Updated: 9:29 am, Thu May 1, 2014.
The Sunday News article (April 27) about Lancaster’s National Day of Prayer, set for today, notes that the featured speaker, Joni Eareckson Tada, is a quadriplegic. Joni also leads a ministry, Joni and Friends, for people with disabilities.

Therefore, I was sad that her presentation would be inaccessible to many people with hearing loss because a request for CART (Communication Access Realtime Translation) realtime captioning was not granted.

I recently assisted a hard-of-hearing friend who wanted to attend Bible teacher Beth Moore’s presentation at the Giant Center in Hershey on May 2-3.

Although the Giant Center’s Website states that it has an assistive-listening system and will provide sign language interpreting on request, what my friend needed was CART.
However, both LifeWay, the event’s sponsor, and the Giant Center refused a request to provide it. (Ironically, there is greater awareness of the need for sign language interpreting than for CART, despite the fact that far more people need the latter.)
The Beth Moore event charges $69 to attend and consists of 5 1/2 hours of presentations. The requested access would only cost a few hundred dollars and could have opened the door to participation for many who were otherwise excluded (providing access for the 2 1/2 main event hours of the Day of Prayer would cost even less).
The Disability Rights Network of Pennsylvania then spoke to the Giant Center’s ADA coordinator (the ADA — the Americans with Disabilities Act, passed in 1990 — requires the provision of effective communication), and the Giant Center finally agreed to provide CART.
Of course, since there was no publicity, many others who could have benefited would have no way of knowing that this access was available.
So, here we have two religious events, one of which provided communication access only when a possible legal challenge loomed and the other of which, despite featuring a speaker with a disability, ignored a request to include and publicize similar access.
The cost in each case was minimal and the gain to those whose attendance would have been enabled was priceless.
Nancy Kingsley
East Lampeter Township

Sunday, May 4, 2014

Oticon Focus on People Award Nominations Now Open until May 15

My friend Sarah Wegley, aka Speak up Librarian posted information regarding this year's Oticon's Focus on People awards. It's not to late to nominate someone for this award. The deadline is May 15, 2024.

Hop over and learn more about how you can nominate someone at Sarah's page: http://speakuplibrarian.blogspot.com/2014/04/oticon-focus-on-people-awards-2014.html

Sarah was one of  Oticon's Focus on People awarded in 2011. 

Friday, May 2, 2014

Patrick Roche - "21" (CUPSI 2014)

My friend Vicki posted the link to this short video on Facebook. The young man begins to count backwards from his age of 21 to before he was born. He highlights impacting memories of several ages. For those of us reading the transcript, it appears they didn't transcribe a few years, but those are the years the young man skips, so don't think something is missing.

The Closed Captions are automated and wrong... so read the transcript for better accuracy.


Such a powerful statement, don't you think?