by Deborah Kendrick
From the Former Editor: Deborah Kendrick and I have been friends for a number of years now. As a professional writer she is a joy to edit. She has the enviable knack of making everything she writes about seem interesting, and I always find her opinions well reasoned and compelling. At an NFB of Ohio board meeting in January Deborah mentioned in passing that she had discovered a new and incredibly valuable feature of NFB-NEWSLINE®, our digitized newspaper-reading service by phone. The new feature was Global Search. She briefly described it and explained that it had just made possible the research for her most recent newspaper column. I urged her to describe her experience for Monitor readers, and to my delight she has done so. This is what she wrote:
For twenty-five years one of my primary roles as a freelance writer has been to produce a newspaper column on disability rights issues. For some years it was syndicated in a variety of newspapers around the country; for eighteen years it ran every Sunday in the Cincinnati Enquirer; and since 1993 it has run every other week in the Columbus Dispatch.
To keep such a column going for so long has meant staying ahead of the curve with regard to news items relating to disability. I can't just write about how it feels to be a blind person. In fact, for many years I avoided discussing topics of blindness more than rarely for fear it would narrow the column's appeal.
I write about blindness, sure, and certainly more often in the past few years than for the first two decades of establishing credibility, but I also write about dyslexia, bipolar disorder, spinal cord injury, deafness, autism, Tourette’s syndrome, and a host of other disability-related conditions as they arise in news events. I comb a variety of news sources for ideas, and I can always find scores of possibilities.
Last week I saw a news item about a woman who had written a blog post that had garnered plenty of attention. Her three-year-old child needed a kidney transplant, and Chrissy Rivera, the mother, had written a compelling post detailing her horror during a meeting with the social worker and physician with whom the Riveras met in a conference room at Philadelphia's Children's Hospital to discuss the operation. Her horror arose when the doctor told her that her child would not be put on a waiting list for the transplant because she was mentally retarded. It was less than twenty-four hours before my deadline, and I wanted desperately to write about this family. But a responsible journalist can't go off on a tear, even with an opinion piece--perhaps especially with an opinion piece--based on one short news article.
I searched for Chrissy's blog online and found it. I read about Wolf-Hirschhorn's syndrome, the genetic condition that led to her child's physical and mental disabilities. I found the online petition that another mom had been inspired to launch on behalf of the Rivera family.
I found Chrissy's email address and sent her a message asking for an interview.
We sent a few emails back and forth and had a brief phone interview. It was now twelve hours till deadline, and, while I had confirmed the story, I felt that I needed to know more.
Who else had written about this situation? What had those other writers written? If I was going to take it on as my column subject, mine had to be a fresh approach.
Yes, I could have done a Google search for stories, but I thought of a much more expedient way to get what I needed. I pulled out my iPhone and tapped on NFB-NEWSLINE from my Favorites list.
I have been a fan of NEWSLINE since its inception and remember the thrill I experienced in the mid 1990s when I was working on a Page One feature on toys and heard there had been a piece in the New York Times regarding my subject. At that time I called NEWSLINE, navigated to the New York Times, and entered the search word "toys." I still remember the thrill and perhaps chill I experienced when the very article that had been mentioned showed up instantly on my phone.
But NEWSLINE is not a static entity. It is a work in progress with newspapers, magazines, and features constantly being added to enhance that original product. We can download our favorite publications for listening on a purchased DAISY player or the digital Talking Book machine issued to all eligible patrons by the National Library Service for the Blind. We can read store ads, search for jobs, and explore TV listings through this constantly enhanced creation.
Recently the fabulous NEWSLINE team has added a feature called “Global Search,” and that was the feature on my mind when I turned to my phone for speedy results. My innate and insatiable curiosity, of course, had already prompted me to play around with the Global Search feature somewhat, but this wasn't play. Now I had a serious and immediate need. It was now three hours till deadline.
Chrissy Rivera lives in New Jersey. I live in Ohio. I had no idea which newspapers were available in her immediate vicinity. But, with the Global Search feature on NEWSLINE, I didn't need to know. Upon logging in to NEWSLINE, I pressed 0 for Subscriber Panel. From there, I pressed 4 for conducting a Global Search. Next I pressed 8 for a New Search (NEWSLINE still remembered my previous four searches and politely offered me the opportunity to visit one of them again. No, I told NEWSLINE by pressing 8, I wanted a new search.) NEWSLINE offers plenty of options for defining your search. In this instance I selected Newspapers and all existing content. Then, for my search phrase, I carefully entered the name "Chrissy Rivera."
Now here is where some new users of this remarkable feature might be a tad daunted. Braille users, I think, might actually find it easier and more intuitive than those not conversant with Braille. NEWSLINE requires that you enter the two-digit numeric equivalent for each letter of the alphabet. A is 01, b is 02, c is 03, and on it goes through 10 for j, 18 for r, 20 for t, and 26 for z. If you are a Braille user, you know that A through J are the same symbols as 1 through 0, and that k through t are formed by repeating those same 10 characters with the addition of dot 3. Thus, it is relatively easy, with a little practice, to know that you enter g by pressing 07, k by pressing 11, o by pressing 15, and so on. The twenty-first through twenty-sixth letters of the alphabet, u through z, go back to those first 10 characters and add dots 3 and 6. The absence of a w in Louis Braille's native French leads to a little more effort in conjuring the numeric equivalents for u through z, but again, with a little practice, you will find it quite easy and efficient.
And so it was that I entered Chrissy's name: 03 08 18 09 19 19 25 (followed by two 0's to indicate a space) and then 18 09 22 05 18 01 (followed by 99 to tell NEWSLINE the phrase is complete). At each step of the process, your selections are confirmed, so NEWSLINE told me at this point that it would be searching all newspapers for the phrase "Chrissy Rivera."
Within seconds NEWSLINE had located twenty-four items! Sure, a few stories occurred more than once, but I quickly had at my fingertips stories of varying lengths that had appeared in papers small and large throughout New England, a couple of Associated Press stories, and versions of the same in papers in Tampa Bay and Seattle. Using the phone keypad, I was able to zip through these stories, recognizing when segments or whole stories had been reprinted from one paper to another and picking up some new and interesting facts along the way. Using NEWSLINE's email feature, I sent a few of the stories to myself so that I could examine the spellings of names on my Braille display or lift material for quoting if I wanted it.
I also quickly discerned that every writer had led the story with Chrissy's point of view. I knew, in other words, how I wouldn't be starting my column. The dad, Joe Rivera, wasn't quoted nearly as often as his wife, but one quote I found in a few stories spoke to me, spoke with poignant clarity to the center of my being, the center that despises discrimination, and I had my lead. I moved to my computer then, read the stories I had emailed myself, wrote my column in an hour, and sent it to my editor an hour ahead of schedule.
In the National Federation of the Blind we are truly fortunate to have so much talent and intellect working daily on our behalf. NEWSLINE has always been amazing, but, like everything else the NFB touches, it is never neglected, never simply set aside as a completed project. NEWSLINE is a work in progress, always growing in features and capabilities, as is the Federation itself.
My guess is that, with this rich resource just a telephone call away, I very likely acquired the information I was seeking even more quickly than a sighted writer might have done. It took my own intelligence to identify the story, my own intuition to know I needed more information, and my own talent and creativity as a writer to use the information I had gathered to develop a column that was both fresh and compelling.
That is what NEWSLINE in particular and the Federation as a whole gives each of us: tools to augment our own skills and abilities, tools to put us in a position from which competing and excelling are both possibilities and realities. Not spending time to use those fabulous tools is, in my view, something akin to kicking a shiny new birthday gift down the stairs.
Note: My January 22, 2012, column, resulting from the activities described above, is reprinted here, in case you find it of interest as well. Incidentally, I emailed it to myself from NEWSLINE the morning it appeared in the Columbus Dispatch.
Deborah Kendrick Commentary:
Who Are “Experts” to Decide Whether a Life Is Worth Living?
“Thunderstruck" and "punched in the gut" were the words used by Joe Rivera, a thirty-nine-year-old parent in New Jersey, to describe an encounter regarding his three-year-old daughter last week. I recognized those feelings immediately. I have experienced those exact feelings myself: when a promised job was immediately pulled from me, when my preschooler was told something completely untrue about me, when an online friend recoiled and disappeared upon learning of my disability. But my own thunderstruck punch in the gut affected only my feelings and, yes, perhaps my quality of life--not life itself. Joe Rivera's reaction was triggered by something far more serious: a perceived threat to the life of his three-year-old child, Amelia.
In a blog entry posted last week, Joe's wife, Chrissy Rivera, described an encounter between the couple and an unnamed doctor and social worker in a conference room at the Children's Hospital of Philadelphia. The couple's daughter, Amelia, was born with Wolf-Hirschhorn syndrome, a rare genetic disease that can cause physical and mental disabilities. Amelia needs a kidney transplant, and, as Chrissy wrote in her blog, they entered the room believing they were about to receive instruction on how to prepare their daughter for the operation. Chrissy's description of the encounter is poignant; heart-stopping and, if you or your child has a disability, completely recognizable: `I put my hand up. Stop talking for a minute. Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?’ I begin to shake. My whole body trembles, and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.
Another mother of two sons with disabilities read Chrissy Rivera's blog post and launched an online petition demanding that Amelia be given the transplant. As of Friday morning the petition had gained 32,894 supporters. The Children's Hospital of Philadelphia has responded with a notice on its Facebook page that they are listening and concerned but make no reference to the individual case. Medical experts around the country are weighing in, saying that "quality of life" is always a consideration in transplant cases, and the waiting list for kidneys and other organs is horrific and growing. But those weren't the issues logically addressed by the social worker and doctor who met with two parents whose child needs a kidney within the next six to twelve months.
The Riveras say they have had wonderful experiences with the hospital throughout Amelia's short life, and that this encounter was with only one doctor. Chrissy Rivera confirmed in a phone interview that the couple is meeting with the hospital's transplant team next week but only for further discussion, not a guarantee of moving forward with the transplant. Maybe there are medical complexities involved here that are beyond my understanding, but the simple scenario as unfolded to date is not complex at all. Two human beings, a social worker and a physician, decided unequivocally that, because a medical record indicated that the child had mental retardation, a child’s life was not worth saving. Chrissy and Joe Rivera are exemplary parents, fighting for their daughter as undoubtedly they would for her two nondisabled brothers. But for every set of parents like them, there are other parents who defer to "experts" as holding the only true answers, and the sad bottom line is that ignorance that leads to grave consequences is an equal-opportunity disability in and of itself, a disability that no amount of education, no credential can prevent.
Amelia Rivera is lucky to live in a time when we have laws to protect the rights of kids with disabilities and a time when the Internet and social networking can spread word of injustice like the proverbial wildfire. But laws can't mandate common sense or morality--or the recognition that no one can judge another's quality of life and every life is worth saving.
Deborah Kendrick is a Cincinnati writer and advocate for people with disabilities. <[email protected]>