Archive for May, 2012

Contributor Erin Jepsen – Sometimes, It’s Okay To Stop

Since she came home from Africa, our four-year-old daughter Abi has had three surgeries on her eyes. Each time I handed her over to the anesthesiologist, it was harder, and each time the doctor made his way into the waiting room to tell us that things did not go well, my heart sank a bit more.

It’s been interesting to see the reactions of friends and family to surgery. Sometimes, I think people have more faith in Western medicine than they do in God. Most people expected a regaining of sight for Abi for every surgery. They want to know if she enjoys being able to see now. When the next one comes up, they ask if it will “cure” her.

Now, don’t get me wrong, we have made quite a few amazing medical advances since the days when doctors would poke at a cataract with a sharp awl to dislodge the lens (insert cringe here). But we still cannot cure everything, and my daughter’s eyes are severely damaged and fragile from years of untreated glaucoma and a possible failed surgery before she came to the States.

During this last surgery, she ended up with a burst blood vessel and a bad bleed, putting her at risk for infection and a detached retina. At that point, Abi’s surgeon, my husband, and I all agreed it was time to call it quits. Her pressure is still much too high, which means she’ll lose the remaining sight she has.

Each surgery, though, means a long drive to the city, missing two days of work for my husband, interruption to our life, family, and bonding, and a cost of thousands of dollars. When they turn out less than ideal results, it’s simply time to stop.

Most blind adults I’ve ever talked to report multiple surgeries growing up–some that did more damage than good. They report pain and disappointment and fear. Where is the balance between madly grasping at straws to “save the precious sight” and getting on with life? I suppose that answer is different for each family. For ours, it’s time to stop, at least for now. Modern medicine can be a wonderful tool to improve life, but there needs to be a balance and a consideration of the whole child. Abi is not just her eyes, and her needs include stability, security, and a life with less disruption and fear.

This may sound like I am justifying our decision, but actually I’m quite content with our decision, and my reason for writing this is to reassure other parents who may be struggling with drawing the line on this issue for their family. It’s difficult to say no to continued surgeries when friends and family don’t understand why you’re not doing every possible thing you can do to cure your child’s eyesight. They ask questions like, “Have you gotten a second opinion?” or “Have you seen this famous specialist way over in Pennsylvania who specializes in cases like yours?” It’s tough to tell yourself that it’s ok not to spend every penny your family has trying to “fix” your child; to let her be “okay” just the way she is. That’s hard to do, and that’s right where I am now. Sometimes, I think it really is okay just to stop, and I think many blind adults would agree with me, that there comes a point when a person needs to go on with life. And hers is a good life. She is bright and sparkly and learning English so fast it amazes me. She loves to learn and loves to sing. She is more than “okay” the way she is–she is absolutely fabulous!

There it is, then. I’ve shared with you what our family has chosen to do, at least for now. I’d love to hear comments in the Reader’s Forum on this difficult issue.

Op Ed with Bob Branco – Blind Softball League Commissioner

Several weeks ago, I began my seventh year as Commissioner of the Branco Softball League, an adult, slow pitch league in my community. I wonder how many other blind people are commissioners of an all-sighted league. If you thought it might be a difficult job for someone who is blind, let me assure you that it’s not.

As League Commissioner, I make out the schedules for the teams, hold coaches meetings, appoint subcommittees, apply for field permits, raise sponsorship money, order equipment for the league, pay the bills, report the team standings to the local media during the softball season, film random games for broadcast on local Cable Access Television, and pay scorekeepers, umpires and field maintenance personnel. This year, the Branco Softball League has ten teams with male and female players. We are recognized as one of the largest mixed adult leagues of this type in the Southeastern Massachusetts area.

There are times when players and coaches question the decisions that I make as League Commissioner, but as far as I know, their opinions have nothing to do with my blindness. Knowing this makes it easier to do my job, because I know that if I make a mistake, or if someone opposes a decision that I believe to be for the good of the league, it has nothing to do with my disability. To put it another way, I am free to succeed and fail as a human being, and not as someone with vision loss. To them, I’m just another guy–and I really appreciate that.

I am aware that many of you are active in your communities, and I applaud your efforts. However, for those who need a bit of inspiration from my story, I hope I was helpful to you.

Have you ever thought of becoming a Commissioner of an organized, sighted softball league or any other organization that serves a sighted population? Let us hear about it in the Reader’s Forum.

Feature Writer Steven Famiglietti – Remembering a Star

In life, we all have someone we admire, someone who is our hero and someone we love, even if we never knew that person. Sometimes, it is a movie actor, cartoon character, rock group, or singer. In my case, it was Donna Summer. She became famous in the United States when I was only two years old and from that point on, I found myself loving everything she recorded.

When I was a child, Disco exploded everywhere. I didn’t understand what it really was, I just knew I liked all of the glittery lights and the sounds of the music. At one point, Donna Summer appeared on a Dick Clark show after my bedtime. My mother came and woke me up saying, “Donna Summer is on, come watch her with me!” So, we went and watched her performance together. Just about the same year, a family friend encouraged me to write a letter to Donna Summer to express my gratitude. I was in first grade at the time. Several weeks later, I received an autographed photo of Donna in the mail and I still have it to this day.

Over the years, my parents and I always listened to her music and watched her on TV. Somehow, she became a part of my life. My father and I used to go to record collectors conventions and I would search for her rare albums, singles, and posters. I found some amazing things and it was a great father-son thing to do together. I’d look for Donna Summer items and he would look for 50’s music.

In 2008, I got the chance to meet her in person, which had been a lifelong dream of mine. I noticed that as I spoke to her, she was genuinely interested in meeting me and listening to the story I told her about how I got interested in her and why I enjoyed her music. After I finished my story she said “Thank you for telling me that story, give me a big hug and God bless you!”

The following year, I again had the honor of meeting her after her concert. When she saw me she said, “Hi, how are you doing? I haven’t seen you in a while, what is new?” During that meeting, she also met my parents, another life dream of mine.

As a person who is legally blind, I experienced many firsts because of Donna Summer. My first concert was a Donna Summer concert, she is the first famous person I ever met and because I am a fan, being a part of her fan community helped me to be social outside of school and work.

Over the past few days, I’ve received phone calls, text messages, email messages, and posts to my Facebook wall from friends and other fans who have expressed their sympathies to me.

So, I am glad for all of her music, for all the memories and for knowing her and all of her fans. She may no longer be on earth, but her music will live with me forever.

Feature Writer Terri Winaught – Love, Peace, and Soul

When my husband told me that the Temptations and Four Tops were performing in Pittsburgh on Mother’s Day, I was surprised. When Jim then added that he had tickets close to the stage, I was both surprised and happy.

As I thought about attending this concert, I also reflected on Soul Train, a program which began in 1970. With sadness, I then thought about Don Cornelius’s recent death and wondered why so little was said to celebrate the life of a man whose rich, resonant voice wished us “love, peace, and soul” for so many years.

Donald Cortez Cornelius (better known as Don Cornelius), was born in Chicago, IL on September 27, 1936. Bronzville was the South Side neighborhood where Don grew up, and DuSable was the high school from which he graduated in 1954. After graduation, Mr. Cornelius entered the Marine Corps and served in Korea for 18 months. Upon his return, Cornelius held a variety of jobs until 1966, when he quit work to attend a three-month broadcast training program. Mr. Cornelius was then hired by a local radio station where he was an announcer, D.J., and news reporter. In 1967, Cornelius landed a job at WCIU TV where he hosted a daily program on media coverage of the news from a black perspective. As he continued to pursue a career that was inspired by the Civil Rights Movement, Don Cornelius thought a lot about there being no TV venue devoted to soul. Cornelius responded by creating Soul Train, which first aired on CIU TV in 1970. In October 1971 when it became a nationally syndicated franchise, Soul Train moved to Los Angeles, California, where Cornelius hosted it until 1993. With other hosts such as Shemar Moore, Soul Train aired until 2006. Singers featured on this one-of-a-kind program included Aretha Franklin, James Brown, Michael Jackson, and the Staple Singers.

“Soul Train is a show kids really gravitate to,” Cornelius said. Spike Lee described Soul Train as “an urban time capsule.”

Though Cornelius was active in his field from 1966 until 2011, his last public appearance was in 2009 when he presented the Ojays with the Black Entertainment TV’S Lifetime Achievement Award.

On February 1st, 2012, 75-year-old Don Cornelius was taken to Cedar Sinai Hospital where he was pronounced dead by the Los Angeles assistant coroner of an apparent self-inflicted gunshot to the head. Shemar Moore said that Don Cornelius may have been in the early stages of dementia or Alzheimer’s, and added that his health had been declining for some time.

Through Soul Train, reruns of which can be seen on Viacom Cable, YouTube, and soultrain.com, Don Cornelius exposed many black performers to a wider audience. There’s no doubt that Donald Cortez Cornelius’s wishes for love, peace, and soul will live on.

I’d love to hear any nostalgic thoughts about Soul Train, music of the 1970’s and ’70’s culture that you might have, so please share in Readers Forum.

Source: www.wikipedia.com

Feature Writer Ann Chiappetta – Rustic Vacationing

Years ago I loved to go camping–you know, what some folks call “roughing it. This included a tent, hiking into the backwoods of upstate New York, campfire, and no indoor or outdoor plumbing. Eventually, I outgrew this stage and traded the hard, uneven ground for an air mattress and a campground that offered indoor plumbing and hot water. The latter was heavenly for those times when we were cold and damp from the rain. Why did it always rain when we camped? Anyway, after a few years of leaky tents, terrifying thunderstorms, and such, I traded in the tent for a cabin. My veteran husband calls this “wimp camping”. I say, heck, after 40, I want comfort, I have absolutely nothing to prove, and after a weekend of “wimp camping” I don’t have to deal with a sore back and muddy sleeping bags, kids, and tents, among other things.

Besides, our kids and guide dog deserve it, don’t they? I think it’s the best of both worlds–we can still sit by a fire and make smores and at the same time not have to hike up to the toilet in the middle of the night when nature calls.

On Easter weekend I found myself in a new, fully equipped deluxe cabin which included a full bath and kitchenette. The queen size bed, cable TV, and baseboard heating kept us warm, dry, and relaxed. Each morning, I woke with the birdsongs and sat on the porch in the swing seat, listening to the echoing solitude city life cannot replicate.

My husband hasn’t complained about it yet, either. Maybe he’s ready to give himself over to the advantage of camping with comfort.

Do any of you have plans to go camping this summer? Tell us about them in the Reader’s Forum.

Feature Writer John Christie – A Look at Two Digital Readers

There is a new player out on the market that the blind and visually impaired can purchase. This player is called Plextalk Pocket PTP1 DAISY Book Player and Digital Recorder manufactured by Shinano. This player can do everything that the Victor Reader Stream can do, including playing books from a variety of sources such as Bookshare, The National Library Service for the Blind & Physically Handicapped, Learning Ally, and Audible.

One of the advantages that the Plextalk Pocket has over the Stream is that it has a better speaker than the Stream, as well as many other players that are manufactured for the blind. In addition, this player has a switch to lock all keys on the right edge.

Another feature that the Plextalk Pocket has over the Stream is the ability to play quaint melodic sounds when the player is turned on or off. However, this feature can be turned off so that this player would be similar to the Stream. In addition, with the Plextalk Pocket, you can insert headings in to your recordings to improve navigation and review. Similar to the Stream, the Plextalk has the ability to record memos or notes and can also find out the time and date.

The Plextalk Pocket and the Stream are also similar in many ways. For one thing, they both have an SD card already inserted. In addition, they also come with ear buds, an AC adapter, A USB cable to transfer data to and from your computer, and a short USB adapter for transferring material to a memory stick or CD player. In addition, you also get a CD with the manual in Word or HTML.

Both players are shaped similar to a deck of cards and have twelve buttons on the keypad–similar to a telephone keypad. The Stream, unlike the Plextalk Pocket, has three voices. It has a narrator voice and also voices “Tom” and “Samantha.”

Both players have a tutorial, but I find the Stream tutorial much better than the Plextalk Pocket’s. The tutorial of the Stream takes you step by step through the functions of the Stream. As a matter of fact, they just revised their tutorial about six months ago. The Plextalk Pocket’s tutorial is made up of little clips on how to get started with the player.

You can purchase the PLEXTALK Pocket from a variety of sources. Shinano Kenshi is selling the product for $275 until May 31. In addition, you can also purchase the player from Freedom Scientific. Their number is 1-800-444-4443 or from Plextalk at www.plextalk.com.

The Victor Reader Stream can be purchased from Humanware Canada. Their address is 445, rue du Parc Industriel, Longueuil, Quebec J4H 3V7, Canada; phone: 888-723-7273 or 819-471-4818; e-mail: ca.info@humanware.com; website: www.humanware.ca. Price: $329.

Both players are excellent for people going to school or for pleasure reading. These players are also accessible to people because they are in the reach of the average person’s income.

If you have any opinions of either player, please share them with us in the Reader’s Forum.

Feature Writer Lynne Tatum – Having a VoiceSense: A Wrap-Up

Curiosity got the better of me and I set about adding digital downloads from our National Library Service to the VoiceSense. My next challenge is remembering to press the spacebar to select the book I want to hear. Pressing Enter will not work–you’ll open the folder, but no content will be displayed. I find this a bit irksome, but certainly not a procedure I cannot learn. One other caveat that I’ve found is that as I speed up the books, they do not sound as smooth as they do on my Victor Reader Stream. Though, this has been the case with other players as well.

Allow me to add that the procedure for receiving your key code will be familiar to those who have gone through the process with other portable players. You log into the NLS BARD page and choose your player. Once you’ve heard from them, you are instructed that you will next hear from the HIMS manufacturer. I did, and was given decent instructions for finding the device name and key. I thought it a bit odd that once the key is copied to the VoiceSense, you receive no verbal confirmation. You open the DAISY player, select a book with the spacebar, and simply wait. Thankfully, the tech gods were with me and all went smoothly.

Based on my success with NLS, I decided to add Audible books to the device. Searching the device list in the Audible Manager yielded no HIMS products. This raised my eyebrow, but I was soon to learn that indeed the good folks at HIMS did not even know that www.audible.com exists–at least the representative with whom I was given the opportunity to speak face-to-face seemed unaware. This also led to my asking if HIMS would consider adding an RSS reader and having separate volume controls for the speech synthesizer and the media player. He advised that a software update is due towards the end of May and the volume issue might have been corrected there. I am very eager to investigate the changes and improvements and will likely report back with my findings.

I have also continued to struggle with the quirky Wi-Fi issue, necessitating the need to reset the device, and for some unknown reason, my e-mail accounts were unceremoniously dumped. Undaunted, these annoyances have not diminished my absolute joy in using this dream machine. I have used it for student assessments, taking notes at our staff meetings, writing study materials on the bus to be posted to my class blog, and so much more. I’m even able to spell-check my work before posting it. The level of freedom and flexibility is incredible.

Bottom line: When it is good, it is very, very good–and when it is bad, I reset!

Feature Writer Karen Crowder – Memorial Day: A Brief History

As Memorial Day weekend approaches, the media unleashes a deluge of ads for summer sales at stores and in online catalogs. The holiday weekend signals the beginning of this 2012 summer season when roadside stands, beaches, and amusement parks now open across the country. Students from elementary through high school love this day and the anticipation of summer vacation.

According to Wikipedia, Memorial Day was originally Decoration Day, beginning in Charleston, South Carolina in 1865. This day would commemorate the soldiers who had fought and died during the Civil War. That year, there were also memorial services for President Lincoln as well.

In 1868, May 30th would be chosen as the date to celebrate Decoration Day and by 1882, the name was changed to Memorial Day across most of the country. As an interesting side fact, the African American community chose to celebrate their Independence Day in May, commemorating the abolishment of slavery. Decoration Day is also still celebrated in the Appalachian Mountains and the rural southern cemeteries are often decorated with flowers.

By the early 20th century, this holiday would begin to resemble this century’s commercial celebration. Its emphasis would broaden, with people remembering relatives and family members who had passed away by putting flowers on their graves. The solemnity of this day began to wane and started to symbolize the unofficial start of summer rather than a day of remembrance and reverence.

But not all was lost in the rampant commercialization of the holiday. There are still parades and an earnest effort to show that we appreciate our troops and will remember all who have fallen in an effort to protect our freedoms. No amount of sales or commercials can ever be allowed to overshadow that, and I truly believe that people give proper value to the holiday–now more than ever.

So while you’re enjoying the nice weather with family and friends this long weekend, please take a moment to remember what this holiday means, and even if it’s just spoken to yourself or in your mind, say “Thank you.”

Feature Writer Alena Roberts – Spelling Her Way to Victory

If there’s something I remember dreading in school, it was spelling tests. I’m actually a pretty good speller, but I was always worried that I would have something really challenging thrown at me.

This problem, however, is not a concern for Richelle Zampella, an 11 year old from Oklahoma who will be competing in the National Spelling Bee at the end of May. What makes Richelle special is that she has LCA, and unlike the rest of her competitors, she’s learned how to spell by reading Braille rather than print.

Richelle is a great example of why Braille is so important. She started learning Braille in kindergarten, and by the end of the year she was reading at a second grade level. By learning Braille, Richelle is able to understand how words look to her sighted peers–hers just happen to be tactile rather than visual.

She won the Eastern Oklahoma spelling bee competing against over 100 students by properly spelling the word “Stollen” a type of German cake. Her Braille skills have helped her to understand that words that are homonyms can be distinguished based on their context.

Richelle is hoping that her dad and little sister will be able to join her at the finals the end of this month. If you’re interested in donating to help them out, please send a check to: Eastern Oklahoma State Spelling Bee, c/o Armstrong Bank, 2520 Chandler Rd., Muskogee, OK 74403.

I hope that Richelle does well at the Spelling Bee and helps to show America that we have a literacy crisis that needs to be addressed, but can be solved by helping to increase Braille usage.

To read the full story visit this link: http://www.people.com/people/article/0,,20596891,00.html

Letter from the Editor – May 21, 2012

Hello Everyone,

As always, I hope you all had a wonderful weekend.

I’m going to make this short and sweet so you can get into the good parts of this week’s magazine–and there are many–but first, I wanted to make a couple quick announcements.

As with previous years, next week’s magazine will be released on Tuesday, May 29th, since our office will be closed on Monday in recognition of Memorial Day.

Also, in addition to the normal sections in the Special Notices and Pen Pals Supplement, there will be a section for event notices that did not make it into the 2012 Summer Events email that went out last week.

That should cover everything for now. I hope you all have a great week, and for those of you here in the states, a nice long weekend.

Take care, and thank for reading.

Sincerely,
Ross Hammond