"Am I blind?" I asked myself on New Year's Eve 2005 after reading the Miami Herald's front-page Judaism feature: 'FAITH REWARDED. BLIND, DEAF AND LOVED BY TWO PROUD PARENTS, JOEL SARUSKI HAS OVERCOME LONG ODDS TO PREPARE FOR HIS BAR MITZVAH'
A large color photograph of Joel, age 12, appeared at the top of the page. He seemed to be looking at his teacher's hands and mirroring the sign language being presented. Another large photograph of Joel, this time with his family, appeared on the second page. He appeared to be looking at his mother, imitating her hand, signing, with his hand.
"He is deaf and blind," read the story. Furthermore, "Bar and bat mitzvahs are still unusual for children with such disabilities as Joel's deafness and blindness." We learn how Joel, during a practice session with his Auburn Elementary School Teacher, bounded up the steps of the sanctuary of the Cuban Hebrew Congregation, where he accepted a skullcap and prayer shawl. "Eagerly, he began signing as his father sang." Thus is "a disabled child's faith rewarded by tradition."
Good for Joel, his parents, his teacher, the Cubans, the Hebrews, and the rest of Miamians for having such fine people in their midst, I thought, but something seemed wrong with the pictures or the text: they did not match. The boy did not appear to be blind. Perhaps the young man is partially blind, or legally blind, but that was not indicated. If he were as blind as Helen Keller, we would expect a picture of Teacher impressing symbols in his palm.
I certainly did not want to think less of the achievements of everyone concerned, but the obviously conflicting information within the heartwarming story's content gave me cause to either doubt the integrity or the competence of the Herald editor who signed off on it. If I misread or misjudged the information, surely I was not the only one.
Could it be that this front-page-top story was just another case of Knight Ridder boosterism, of self- advertising posing as a newsworthy feature? Did the Herald exploit a challenged child in its New Year's Eve edition in order to retain and boost subscriptions by playing up to the two most powerful ethnic communities in Miami?
I don't know. And maybe there would be nothing wrong with that sort of thing if it were good for the community. Anyway, I would not have imagined that was the case if Tom Fieldler, its Executive Editor, had not defined the criterion for getting published by his paper:
"A complex calculus comes into play in choosing columnists -- market need, experience, reputation, credibility in a subject, demographic profile (i.e. race, gender and ethnicity) – that goes beyond the ability to write well. Some excellent writers simply never get a column because they're in the unfortunate position of not being the right something-or-other to suit the paper's needs at the time when an opening occurs. "
That evening I encountered by coincidence the following passage in Howard Zinn, A People's History of the United States:
'Blind, deaf, she fought with her spirit, her pen. When she became active and openly socialist, the Brooklyn Eagle, which had previously treated her as a heroine, wrote that 'her mistakes spring out of the manifest limitations of her "development." '
"Oh, ridiculous Brooklyn Eagle!" responded Keller. "Socially blind and deaf, it defends an intolerable system, a system that is the cause of much of the physical blindness and deafness which we are trying to prevent.... When it fights back, let it fight fair. It is not fair fighting or good argument to remind me and others that I cannot see or hear. I can read. I can read all the socialist books I have time for in English, German, and French. If the editor of the Brooklyn Eagle should read some of them, he might be a wiser man, and make a better newspaper. If I ever contribute to the Socialist movement the book that I sometimes dream of, I know what I shall name it. Industrial Blindness and Social Deafness."
Perhaps Joel Saruski will continue the tradition of surpassing disabilities, and become a leading socialist and an honest writer. I certainly hope so.
Addendum:
Ana Saruski, Joel's mother, responded to my editorial. The Miami Herald feature, she explained, was "An attempt by the parents of a severely disabled child to bring awareness that children with disabilities can accomplish the same things that normal functioning children can accomplish, albeit with modifications; and also to bring awareness to the community that disabled persons can be productive members of our community. I hope by now you realize that my child was not exploited. I called the Herald because I felt that it was important that there be media coverage of all that Joel has accomplished in his short life despite challenges that many health care professionals advised me would be insurmountable."
She informed me that the CHARGE syndrome caused her son's deaf blindness, and that he is partially and legally blind; more explicitly: "Joel is completely blind in his right eye, and his left eye’s visual acuity has been measured at 20/400.... Florida (law) defines a blind person as a person having a central vision acuity of 20/200 or less in the better eye with corrective glasses, or a disqualifying field defect in which the peripheral field subtends an angular distance no greater than 20 degrees."
Furthermore, she wrote, the Florida Outreach Project for children and young adults defines deaf-blindness as follows: "The term deaf-blindness refers to a combination of vision and hearing losses, not necessarily complete deafness and complete blindness. Most individuals who are deaf-blind have some useful vision and/or hearing. There is a wide range of cognitive and developmental ability among individuals who are deaf-blind. Because deaf-blindness is a combination of vision and hearing losses, no two individuals who are deaf-blind have the same profile."
Ms. Saruski referred to a Spanish-language story about Joel, entitled 'La recia mirada de Joel Saruski', published 22 days later (1/22//06) in the Miami Herald's sister paper, El Nuevo Herald. Daniel Shoer-Roth, the author of that article, made qualified his statements about Joel's deaf-blindness:
" .... un mal que casi no le permite expresarse, ni escuchar, ni mirar.... Joel nacio con un sindrome de malformaciones congenitas conocido como CHARGE, que generalmente se presenta con deficiencias auditivas y de la vista, ademans de retraso mental."
If such qualifications regarding the boy's deaf-blindness had been made in the English-language version, the photographs would have matched the text and I would have had no occasion to speculate on the editor's motives.
McDonald's noticed the publicity in the newspapers and threw a birthday party for Joel. A large photograph of Joel blowing out the candle on the cake appeared on the front page of the Miami Herald’s Neighbor’s section on February 12. The CHARGE syndrome was mentioned in the caption, which, without qualification, declared the child to be blind and deaf. In any case, as we can see from his mother's clarification, Joel's disabilities are profound, and so are his achievements. Perhaps we shall see him on television in the future, playing a mean game of tennis to raise money for the CHARGE Foundation - just kidding, but given the determination of CHARGE children and the tendency for human beings to "overcompensate" for handicaps, it could happen.
More explicit information on the CHARGE Syndrome appears below.
Excerpt from CHARGE Syndrome Foundation.
For more, go to: www.chargesyndrome.org
About CHARGE
CHARGE syndrome is a recognizable (genetic) pattern of birth defects with the criteria listed below. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. It happens once in every 9-10,000 births. The vast majority of the time, there is no family history of CHARGE syndrome or any other similar conditions. Babies with CHARGE syndrome are often born with life-threatening birth defects. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss and balance problems which delay their development and communication. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. This understanding leads the way to medical and educational interventions and therapies which help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
FROM:
Pediatric Pathology List
www.dpo.uab.edu
CHARGE ASSOCIATION/SYNDROME
Reference Page
Definition:
CHARGE association (or syndrome) is an acronym referring to children with a specific pattern of birth defects. The acronym is: "C" for coloboma, "H" for heart defects, "A" for atresia choanae, "R" for retardation of growth and development, "G" for genitourinary problems, and "E" for ear abnormalities.19
Epidemiology:
The incidence of CHARGE is about 1 out of 10,000-12,000 births. It affects males and females of all races equally.20
Etiology:
Etiology is unknown, but it has been suggested that deficiency in migration of neural crest cells, deficiency of mesodermal formation, or defective interaction between neural crest cells and mesoderm play a part in these defects of blastogenesis.21 Some findings suggest that a gene or genes causing some of the anomalies of CHARGE association may reside in the region 14q22-q24.3. All malformation occur in the first trimester.
Clinical Manifestations:
Traditionally, CHARGE association includes:
Coloboma is cleft or failure of the eyeball to close resulting in abnormalities of the retina or optic nerve. This may result in significant loss of vision, defects in visual acuity resulting in near or farsightedness, and oversensitivity to light.
Heart defects include Tetralogy of Fallot, the most frequent type of heart defect reported in the CHARGE association. The tetralogy is "an anatomic abnormality with severe or total right ventricular outflow tract obstruction and a ventricular septal defect allowing right ventricular unoxygenated blood to bypass the pulmonary arteries and enter the aorta directly.17(p2059)
Atresia choanae is the blocking (atresia)of the airways (choanae) from the back of the nose to the throat that would allow breathing through the nose.
Retardation of growth and development is usually due to heart problems, nutritional problems, or growth hormone deficiency. The developmental delay often is associated with sensory deficits (vision and hearing loss). Some children with CHARGE will be mentally retarded.
Genitourinary problems, in boys includes genital hyposplasia and possibly undescended testes. The girls may have small labia. Reflux of the urinary tract or kidneys is common.
Ear abnormalities include a common finding of unusually shaped ears (short and wide with very little or no earlobe). Hearing loss, conductive and/or nerve, ranges from mild to deafness.
Recent literature has supported the classification of CHARGE as a syndrome. They define major criteria specific to CHARGE as the four C's: coloboma (80-90%); choanal atresia (50-60%); characteristic ear abnormalities (90%), and cranial nerve dysfunction (70-90%). Cranial nerve dysfunctions include: CN I (anosmia); CN VII (facial palsy); CN IX/X (swallowing problems, reflux, and drooling); CN VIII (sensorineural hearing loss). Minor criterion, which are less specific to CHARGE, includes genital hypoplasia (70-80%), developmental delay (100%), orofacial cleft (15-20%), distinct facial patterns (70-80%), and altered palmar creases (50%).22
Diagnosis:
At least four of these abnormalities should be present if a child is to be diagnosed as having CHARGE Association. In any child suspected to have CHARGE, cardiorespiratory, ophthalmological, and audiological evaluations may be performed as well as abdominal ultrasound and chromosome evaluation.
Treatment:
Many of the structural anomalies can be surgically corrected. Due to developmental delay most children with CHARGE will not be mobile until 20-25 months and will not ambulate independently until 35-57 months making early intervention crucial.22 Many will demonstrate a "five-point" crawl with their head down dragging on the floor. Because of the developmental delay, early intervention would play an important role in mobility, improving static postures, transitioning towards ambulation, and teaching self care skills.
Prognosis:
Choanal atresia is life-threatening because young infants cannot establish the habit of breathing through their mouths. Prognosis is based on the severity of factors. For example, a severe case with major developmental delay and growth retardation has a poor prognosis while one with surgically correctable malformations may lead a happy, healthy life.
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