Florida illegally deprived children of needed healthcare
Judge blasts Florida for depriving children of needed healthcare, see Florida Pediatric Society et al v. Liz Dudek, et al., Case No. 1:05-cv-23037-AJ, Order (Doc. 1294) Findings of Fact and Conclusions of Law (153 pages), U.S. District Court, Southern District of Florida, Order filed Dec-30-2014 by the Hon. Adalberto Jordan. So why does Florida deprive children of healthcare?
Aishwarya Rai Bachchan Speaks on Behalf of Smile Train
The Politics of Cleft Palate - a blog by John Halberg
Imagine That America Had Its Consciousness Raised John Halberg
Disability.gov’s Guide to Disability Rights Laws
For more, see the Disability section near the end of this page
The videos on this page are in the public domain, or featured here under the fair use doctrine if copyrighted. I find video stories like the one above by Katya, and the video below by Judge Thompson, very inspiring. I think you will too. I encourage you to watch and listen to their video stories. While inspiring, the speakers on the videos do not endorse me or the Justice Network. My disclaimer.
U.S. District Court Judge Myron H. Thompson, who battled polio and childhood paralysis. He says that discrimination over his disabilities was even more severe than for his race. "It’s not the good things that happen to you that make you strong," he says. "It’s when you confront something that you initially perceive as a disadvantage, that’s what builds character.
Judge Thompson, of Montgomery, Ala., pushed past the paralysis of childhood polio to live an active life, excel in academics and become -- at age 33 -- one of the youngest people appointed to the federal bench. He says he has learned, "Probably, one of the true lessons of life is, 'Always be prepared for the unexpected, because you'll never know when it will hit you.'
Unanswered letter to the United Nations, May 18, 2014
May 18, 2014 - by email only
Re: Records Request
For records of contacts made on my behalf,
or that pertain to Neil J. Gillespie
Dear Deputy Secretary-General Eliasson, Mrs. Knaul,
Mr. Chalklen, and United Nations Associates,
On April 23, 2014 I made a records request of the United Nations. A copy of the records request is attached. As of today I do not show a response. Please advise when I can expect a response...
...Regarding disability, Ms. Zinnah Begum of Bangladesh was born with a craniofacial disorder. Fortunately 58 year-old Zinnah finally got life-changing craniofacial surgery on May 24, 2010 through Touching Souls International for "freedom of smile",
A ten (10) page composite for Zinnah Begum accompanies this letter, and includes photos and URL links, a white paper on "The problems of establishing modern cleft lip and palate services in Bangladesh" (The Journal of Surgery, Volume 2, Issue 1, 2004), and a PDF of the World Health Organization (WHO), Global Health Workforce Alliance for Bangladesh.
Ms. Zinnah Begum, age 58, Bangladesh. Unfortunately, not all persons are born or created equal.
Article 1 of The Universal Declaration of Human Rights states,
"All human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood."
The United States Declaration of Independence proclaims "all men are created equal",
"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness. That to secure these rights, Governments are instituted among Men, deriving their just powers from the consent of the governed."
However it is self-evident that Zinnah Begum was not born or created equal because she needed craniofacial surgery since the time of her birth to be "free and equal" in any meaningful way.
It took 58 years for Zinnah to get her face fixed, another fact that also calls into question whether "all men are created equal" or "All human beings are born free and equal in dignity and rights."
Does the United Nations consider Zinnah Begum disabled? Does the U.N. sponsor or facilitate craniofacial surgery? I was not able to find this information on the U.N.’s website. Thank you.
Neil J. Gillespie
8092 SW 115th Loop Telephone: 352-854-7807
Ocala, Florida 34481 Email: firstname.lastname@example.org
Wrongful birth lawsuit - American Bar Association News
Wrongful birth suit claims sperm bank erred by
shipping vials from black donor
ABA Journal Law News Now
Posted Oct 01, 2014
By Debra Cassens Weiss
A white Ohio woman has filed a wrongful birth suit alleging an Illinois sperm bank mistakenly shipped sperm from an African-American donor.
The suit (PDF) filed Tuesday on behalf of Jennifer Cramblett of Uniontown, Ohio, says she and her domestic partner, Amanda Zinkon, ordered sperm from donor No. 380, who is white, but Midwest Sperm Bank shipped sperm from donor No. 330, who is African-American, the Chicago Tribune reports. Cramblett didn’t learn of the mixup until after she was pregnant and the couple decided to order more sperm for a second child.
"All of the thought, care and planning that she and Amanda had undertaken to control their baby’s parentage had been rendered meaningless," the suit says. "In an instant, Jennifer’s excitement and anticipation of her pregnancy was replaced with anger, disappointment and fear."
The sperm bank later sent a letter apologizing for the mixup that included a refund check for the incorrect sperm. The problem stemmed from handwritten records in which the number 380 looked like 330, according to the complaint.
The suit says Jennifer gave birth to a "beautiful, obviously mixed race, baby girl" in August 2012. Though the couple loves the child, Jennifer has "limited cultural competency related to African-Americans," she regards her town as racially intolerant, and her all-white family is "often unconsciously insensitive," the complaint says.
The suit claims wrongful birth and breach of warranty. A lawyer for Midwest Sperm Bank told the Chicago Tribune the company could not comment on pending litigation.
Cook County Circuit Court, Illinois
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Thanks badinfluence81 for a great message delivered confidently.
Also see Amber’s Bilateral Cleft-Lip and Palate Confessional. Another video to watch itskarendawg cleft lip and palate journey. See Sam Rosen's cleft lip palate story. Here's two silent videos, one of Charlotte Brookes' cleft lip and palate story, and another by Mel Spencer Born with a cleft lip and palate. The two silent videos have a music track and use a written story line to communicate. Also see Anna's articulate video at CLPUnite cleft septorhinoplasty.
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Social Stigma, Wikipedia
Erving Goffman, one of the most influential sociologists of the twentieth century, defined Stigma as the phenomenon whereby an individual with an attribute which is deeply discredited by his/her society is rejected as a result of the attribute. Stigma is a process by which the reaction of others spoils normal identity....in Goffman's theory of social stigma, a stigma is an attribute, behavior, or reputation which is socially discrediting in a particular way: it causes an individual to be mentally classified by others in an undesirable, rejected stereotype rather than in an accepted, normal one....In Unraveling the Contexts of Stigma, authors Campbell and Deacon describe Goffman's universal and historical forms of Stigma as the following. Overt or External Deformities - such as leprosy, clubfoot, cleft lip or palate and muscular dystrophy....
Goffman, Erving (1963) Stigma. London Pe[...]
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Birth Defect: Centers for Disease Control and Prevention (CDC). About one in every 33 babies is born with a birth defect. Not all birth defects can be prevented. But a woman can take steps to increase her own chance of having a baby with the best health possible.
For another use of the word birth defect, see Condi Rice: A National Birth Defect
"Black Americans were a founding population. Africans and Europeans came here and founded this country together: Europeans by choice and Africans in chains. That’s not a very pretty reality of our founding. Descendants of slaves did not get much of a head start, and I think you continue to see some of the effects of that. That particular birth defect makes it hard for us to confront it (race), hard for us to talk about it, and hard for us to realize that it has continuing relevance for who we are today."
The story behind my new Smile My name is Briony and I'm 19 years old. I was born with a cleft lip and palate and as a result I have undergone many surgeries. On 27th September 2014 I had Upper Jaw Surgery. I decided to create this blog to share my experience with those who have gone through the same thing or are about to. I hope this is a help to those who are having similar surgery. If you have any questions feel free to ask :) Facebook
Anne Akiko Meyers is
accustomed to being noticed...Born in California, Meyers is the daughter of a Jewish-American college president and a Japanese artist. As a young woman growing up in suburban Los Angeles, she was
often ridiculed because of her Japanese heritage and her looks...
"We hated the way we looked," she says of herself and her younger sister, Toni. "We didn't look like anyone else, and other children would call us slant-eyes -- and worse. They even made fun of the lunches my mother made for us. She put them together in the intricate Japanese style. When I thought of the care that went into them, I'd cry."... read more Wikipedia Official Website
myFace, the newly rebranded National Foundation for Facial Reconstruction (NFFR), brings life-changing treatment to those with facial deformities.
I attended A Conference November 18, 1992 in New York held by the NFFR, SPECIAL FACES: Understanding Facial Disfigurement, was turning point in my education about congenital craniofacial anomalies (CFA). I am grateful for the work of the NFFR, now called myFace.
Link to a letter from J. Peter Hoguet providing me a copy of the SPECIAL FACES proceedings, and page 88 with my insurance question. Attached is a historical review of $11,775 in expenses I incurred for a missing left lateral incisor related to cleft palate.
The 2015 myFace Gala raised over $900,000 so myFace can continue to support adults like Adiam, born with Crouzon Syndrome, whose 3 surgeries and medical expenses have cost $517,000; children like Nathaniel, born with Treacher Collins, whose 55 surgeries and medical expenses have cost $1.7 million; and infants like Akemi, born with Bilateral Cleft Lip and Palate, whose first surgery and medical expenses have cost $26,215. Read more
Frances Cooke Macgregor (1906-2001) was an expert on the psychological effects of facial deformities. Her publications document 40 years of research. New York Times. She worked as a professor at the Cornel University Medical and Nursing School from 1954 to 1968, during which time she wrote Social Science in Nursing. Hingham Public Library. Macgregor is credited as the first scholar to document the major social and psychological stresses of patients who suffer facial disfigurement through birth, accident, disease or war. LA Times. Macgregor noted certain discrimination:
"One of the things that has always struck me as ironic is the fact that, of all the concerns within the field of physical disability and rehabilitation, the large group of persons in our society with facial deviations, i.e. disfigurement or malformations, is seldom in included. In this respect they are the marginal or forgotten people." Social and Psychological Implications of Dentofacial Disfigurement.
Frances Macgregor attended the NFFR SPECIAL FACES Conference.
Rachel’s Story - The Doctors
Rachel’s story on The Doctors, Living with Cleft Lip and Palate, shows medical complications and setbacks added to this young woman’s pain and suffering, and further increased the extraordinary financial expense of her medical treatment.
Extraordinary Expenses $153,341.68 minimum, adjusted 2014
Extraordinary Expenses of CL&P. Page 4, "the $100,000 minimum individual lifetime costs of treating craniofacial birth defects such as cleft lip and palate"; on page 228, "In California, the lifetime cost per case for cleft lip/palate repair is estimated at $101,000 (Waitzman et al. 1996)." The numbers are 18 years old.
In 2014 with inflation, the adjusted amount is about $153,341.68
Dinner at Multnomah Athletic Club Portland April 1994, after arriving in Oregon for treatment at Oregon Health Science University (OHSU). In January 1994 Dr. Blakeley examined me in Florida while visiting his sister. In Lieu of Florida DVR, I moved to Oregon become a patient of Dr. Blakeley at OHSU.
- Lower left: me and Dr. Robert W. Blakeley (1924-2010)
- Upper left: speech bulb obturator.
- Upper right: me and Dr. Ningyi Li, Professor and Chairman Maxillofacial Department, Qingdao Medical College Hospital.
- Lower right: Affiliated Hospital, Qingdao, Shandong 266003, People's Republic of China. Dr. Li was a OHSU visiting scholar.
- International Outreach, Smile Train and the Medical College of Qingdao University. Qingdao University website
Correspondence with President Amy Gutmann, University of Pennsylvania about, inter alia, a fellowship for Dr. Chen Tao, MD, an Oral and Maxillofacial radiologist, on referral of Dr. Ningyi Li.
Photo Journal: Habilitation of Congenital Craniofacial Disorder
Historical Review of my CL&P and left lateral incisor, $11,775
College paper (1995): Psychosocial Implications of Congenital CFA
College paper (1995): Freud's theory of Infantile Sexuality for CFA
College paper (1998): Vocational Rehabilitation
Letter, Aleisa McKinlay, Director Florida DVR, February 11, 2014
Representation of Petitioner Florida DVR SC11-1622 Appendix-14
Letter July 15, 2013 to Florida Bar President Eugene K Pettis
Letter August 25, 2014 re Florida Unborn Victims of Violence Act
Letter March 31, 2015 to the AmeriFace Board of Directors
Letter April 14, 2015 to the AmeriFace Board of Directors
Wrongful Conception, Wrongful Birth, Wrongful Life, and...Aggrieved Life: Editorial by Neil J. Gillespie
November 25, 2014 (work in progress)
Link to my Scribd Collection
Link to my Scribd Collection Disability ADA
The purpose of this webpage, a work in progress, is to create awareness of "aggrieved life", the extraordinary costs, expenses, and other burdens incurred by a person with a congenital craniofacial anomaly (CFA) before and after the age of majority.
I am not a doctor. And I am not a lawyer, which is also disclosed in my disclaimer. Information found on this website is my opinion, not medical advice, and not legal advice. Here I want to ignite your
imagination, like I experienced twenty-three years ago at the 1992 NFFR SPECIAL FACES Conference in New York City.
The minimum extraordinary expense of treating cleft lip/palate was $100,000 according to "Oral Health in America: A Report of the Surgeon General" published in September 2000. "In California, the lifetime cost per case for cleft lip/palate repair is estimated at $101,000 (Waitzman et al. 1996)." The 2014 amount adjusted for inflation is about $153,342. One current option to pay cleft lip/palate extraordinary expenses is CareCredit at 26.99% intrest (Synchrony Bank). Not acceptable.
Crowd finding may be an option if time is not an issue. Samantha Morse has a Fundly campaign, Cleft Lip & Palate Female needs help with medical treatment. Unfortunately Samantha has only raised $65 toward her goal of $25,000.
A letter May 10, 1993 to Mrs. Clinton by Trudy S. Attenberg, Editor of the Forward Face Newsletter, raised the issues below. The same issues remain 10 and 20 years later, see examples on this page.
1. Pre-existing conditions -This category is currently used by insurance providers to exclude applicants that may not be profitable to them...
2. Orthodontic, speech therapy and hearing aid treatment for craniofacial conditions -In many cases plastic surgery for craniofacial conditions cannot be performed without orthodontic intervention....
3. HMOs and specialty doctors -Our children have been born with rare conditions. Often they go undiagnosed for months. Most of us can tell you that our son or daughter is the only one with this condition in their pediatrician's practice...
4. Inequity of coverage-Insurance companies often distinguish between plastic surgeries for birth defects and for reconstruction of a disfigurement caused by an accident...
Examples of insurance discrimination are shown below, the notorious case of former Rep. Frank Farkas of St. Petersburg: No health insurance for cleft palate, and the White House summit
on health care reform, February 25, 2010 when U.S. Senator Harry Reid explained the plight of Reno businessman Jesus Gutierrez, a restaurant owner, who faced $90,000 in medical bills after his
baby girl was born with a cleft palate and his insurance company denied her surgeries, saying she had a pre-existing condition.
Awareness of aggrieved life considers the full panoply of costs, from the extraordinary costs and expenses for treatment or habilitation of a congenital CFA, to the unremittable costs of social stigma, psychic trauma, and foreclosed career and social opportunities.
Thus, the afflicted person has an aggrieved life, not an ordinary life.
Existing law on wrongful conception, wrongful birth, and wrongful life pertain to rights and claims of parents, and does not consider the aggrieved life of the person burdened with a congenital CFA. See, The Law of Torts, by law professor Dan B. Dobbs, Prenatal and Birth-Related Injuries, Volume 1, Chapter 18, below in PDF.
The preamble to the United States Declaration of Independence begins with the phrase,
We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.
"Abraham Lincoln made it the centerpiece of his rhetoric (as in the Gettysburg Address of 1863), and his policies. Since then, it has become a well-known statement on human rights..." Wikipedia
Courts sometimes dismiss the wrongful life claim on the theory that any life is preferable to no life. Such judicial responses are woefully inadequate for the aggrieved life of a person born with a legitimate grievance. Also, birth claims against competent physicians under current law are misplaced, against public policy, and must end.
See For 'wrongful birth,' $23.5M, A jury sides with a family over a USF geneticist's "rotten advice" by Colleen Jenkins, St. Petersburg Times. Also see A Wrongful Birth? by Elizabeth Weil, New York Times Magazine. Greg Dahlmann of
bioethics.net discussed the preceding stories in The Language of "Wrongful Birth".
Unfortunately not all persons are born or created equal, however defined, or endowed by their Creator with so-called unalienable Rights such as Life, Liberty, and the Pursuit of Happiness.
A person born with a CFA essentually enters life with an unwritten and unheard petition for a redress of their grievances, an appeal that Government instituted under the Constitution has largely ignored. The result too often is second-class citizenship for a person born with a CFA, a result that is unconstitutional.
So how does a just society respond to its citizens and residents who have an aggrived life as described above? One of the many possible responses is through the American legal system. See below, A case of valuation of injury: Dillard's.
Prenatal and Birth-Related Injuries
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Surgical Friends Foundation is an organization that is working to provide reconstructive surgery and improve access to quality medical care by uniting patients, physicians and philanthropists.
A case of valuation of injury: Dillard's
Overlawyered reported Dillard’s agreed to pay $15 million to the family of a young girl who lost three fingers when they became trapped in an escalator in one of its Florida stores.
The story was also reported by the St. Pete Times (SPT), by Jamie Thompson, Feruary 4, 2005, Price for 3 fingers? $15 million
Psychiatrists called by Kerriana's lawyers said hands are second only to a person's face for communicating. "This child will be teased in school. It is inevitable. It will happen," psychiatrist Michael Maher told the jury. Kerriana may develop low self-esteem and is "almost certain" to carry "psychological burdens."
Jamie Thompson of the SPT also reported that Dillard's blamed the escalator accident on the girl's misuse in a story January 28, 2005:
Many children have deformities, said Dillard's witness Wade Myers, chief of the division of forensic psychiatry at the University of Florida. Some children have an eye that points the wrong way. Others have burns, but live happy lives, he told the jury.
"It's just the way life is," he said.
"Well, it wasn't the way life was for her," said Kerriana's lawyer, Justin Johnson. "... She wasn't born like this."
No, she wasn't "born like this". So consider the societal attitudes and legal rulings toward those with aquired injuries to persons born with injuries. Why is there a difference? Is it prejudice?
Issykle (Laura) has a video, I was born with a cleft lip.
Right of privacy: An overview (Cornell LII)
"A degree of privacy is probably required for full human development. It is essential to personal autonomy and liberty and it is treasured, even by the most open and gregarious people, as important to the quality of life, valuable in itself. In addition, the privacy of individuals reflectively asserts a limit on the power of other individuals, corporations, and government entities." Dobbs, Ch 29, § 424. Introducing Privacy Rights, PDF below.
Privacy of the afflicted person may be violated when an obvious facial deformity results in a stigma to the individual that interferes with daily life. Dr. Thomas Pruzinsky, Ph.D. presented "Social and Psychological Challenges for Individuals with Facial Disfigurement" November 18, 1992 in New York City at a Conference of the National Foundation For Facial Reconstruction [now myFace], SPECIAL FACES: Understanding Facial Disfigurement.
One of Professor Macgregor's important observations of individuals with facial disfigurement is that in the course of going about
their lives, many often experience an invasion of their privacy (Bull & Rumsey, 1988; Macgregor, 1979; 1989; 1990). Most of us can go about our daily lives without having unnecessary attention
drawn to ourselves (i.e., we can "blend into a crowd") (Bull & Rumsey, 1988). This is not necessarily the case for a person with a facial deforlnity. Frances Macgregor stated that "In their
efforts to go about their daily affairs they are subjected to visual and verbal assaults and a level of familiarity from strangers ..... [including] ...naked stares, startle reactions, 'double
takes,' whispering, remarks, furtive looks, curiosity, personal questions, advice, manifestations of pity or aversion, laughter, ridicule, and outright avoidance. Whatever form the behaviors may
take, they generate feelings of shame, impotence, anger and humiliation in their victims." (Macgregor, 1990, p.250).
This experience may also cause some individuals to feel a sense of powerlessness (Bull & Rumsey, 1988) and a feeling of being treated as an object rather than as a person (Hill-Beuf, 1990). This problem of the social interaction may be especially difficult for children who are teased by their peers (Gerrard, 1991).
Privacy rights under the Fourth Amendment may at issue when the afflicted person seeks medical care, or accommodation under Title II of the Americans With Disabilities Act (ADA) as amended. Art. I, Sec. 23 of the Florida Constitution guarantees a right of privacy.
SECTION 23. Right of privacy.—Every natural person has the right to be let alone and free from governmental intrusion into the person’s private life except as otherwise provided herein. This section shall not be construed to limit the public’s right of access to public records and meetings as provided by law.
Section 424. Introducing Privacy Rights
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Francesca one week after upper jaw surgery. Thanks Francesca.
The Cleft Palate–Craniofacial Journal published "Legal
Considerations in the Management of Cleft Lip and Palate" (March 2007, Vol. 44 No. 2), by Claudia Berbert-Campos, M.Sc., a lawyer and juridical advisor at FUNCRAF
(Foundation for Study and Treatment of Craniofacial Deformities) in Sao Paulo, Brazil.
Objectives: To inform professionals providing care to individuals with cleft lip and palate on the legal aspects and organizations available to protect individuals with this alteration, and to advocate that cleft lip and palate should be considered a handicap, even though it is provisional and may be rehabilitated, to assure afflicted individuals basic rights and complete personal, social, and economic welfare.
I would add that impaired speech can be a functional disability of a cleft palate. In the United States, Section 504 of the Rehabilitation Act of 1973 is widely recognized as the first civil-rights statute for persons with disabilities. The Americans With Disabilities Act 1990 followed. A major amendment was the ADA Amendments Act of 2008, a Congressional response to bad Supreme Court decisions.
Notification to State of Florida
Letter August 25, 2014 to Thomas A. "Tad" David, General Counsel, Office of the State Courts Administrator, cc to John A. Tomasino, Clerk, Florida Supreme Court, and John F. Harkness, Executive Director, The Florida Bar...The Florida legislature recently passed the Florida Unborn Victims of Violence Act, Bodily injury to an unborn child, CS/HB 59: Offenses Against Unborn Children...(PDF bill)
...In my view Florida does not have an adequate program of habilitation for persons born with physical birth defects. Therefore, I believe a constitutional challenge [FRCP Rule 5.1] [Fla.R.Civ.Pro. 1.071] is needed to amend the Florida Unborn Victims of Violence Act to include all unborn children. Otherwise a law that only protects certain unborn children in a few circumstances appears unconstitutional... (Note: This was not a notice under the rules)
SB 162: Offenses Against Unborn Children
Offenses Against Unborn Children; Citing this act as the "Florida Unborn Victims of Violence Act;" providing a rule of construction that a person who engages in conduct that violates any provision of the Florida Criminal Code or of a criminal offense defined by another statute and causes the death of, or bodily injury to, an unborn child commits a separate offense if such an offense is not otherwise specifically provided for; providing for criminal penalties for such an offense, etc.
Florida House, Enrolled CS/HB 59, 2014 Legislature (PDF)
U.S. Eleventh Circuit Court of Appeals
"The right to bodily integrity and security of person includes mental integrity, that is, freedom from mental and psychological abuse. The right to safely pursue justice is a fundamental civil right that underscores a litigant’s right not to be subjected to physical, sexual, mental or emotional violence inside or outside the court, either by private attorneys or by judges and people acting on the part of the state. Law already recognizes the tort of intentional infliction of severe emotional distress. (IIED Wikipedia). Litigants in civil proceedings must be free from mental or emotional violence, or their Constitutionally protected rights, including due process, are rendered meaningless." Submitted August 6, 2012.
Nhu Nguyen, born in Vietnam - Agent Orange Concerns
Nhu Nguyen, born in Vietnam, believes her birth defect was caused by Agent Orange, described in "Babbling about my birth defect" on YouTube. Nhu was born with a cleft lip and palate, a serious physical birth defect that may affect speech, hearing, breathing, eating, socializing and appearance. Congenital craniofacial deformity may stigmatize a person; effects of stigma can last a lifetime. Nhu's YouTube video appears below.
Nhu says donate to SmileTrain, even $5 will help a lot.
Ten million gallons of Agent Orange sprayed in Vietnam
Ten million gallons of Agent Orange were sprayed during the Vietnam War. Eighteen different birth defects have been service-connected in children of women veterans who served in Vietnam, according to the Birth Defect Research for Children (BDRC) video below. Link to the National Birth Defect Registry website.
The National Birth Defect Registry is a comprehensive data collection project designed to help answer parents’ question "why my child"? The Registry was designed with a team of prominent scientists. Data are collected through an on-line portal that gathers information about all kinds of birth defects, both structural and functional. The questionnaire also asks about maternal and paternal health, genetic and exposure histories and has two special sections that collect on military exposures in Vietnam and during the Gulf War. read more
The philtrum or medial cleft, is a vertical groove in the middle area of the upper lip, common to many mammals, extending from the nose to the upper lip.
The Cupid’s bow is a facial feature where the double curve of a human upper lip is said to resemble the bow of Cupid, the Roman god of erotic love. The peaks of the bow coincide with the philtral columns giving a prominent bow appearance to the lip. Wikipedia
Wrongful Life, Birth & Conception - Legal Authorities
Black's Law Dictionary, Sixth Edition
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Wrongful life, Black's Law Dictionary, Sixth Edition. Refers to type of medical malpractice claim brought on behalf of a child born with birth defects, alleging that the child would not have been born but for negligent advice to, or treatment of, the parents. Azzolino v. Dingfelder, 315 N.C. 103, 337 S.E.2d 528, 532. See also Wrongful birth; Wrongful conception. Wrongful life, Wikipedia
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Wrongful birth, Black's Law Dictionary, Sixth Edition. A medical malpractice claim brought by the parents of an impaired child, alleging that negligent treatment or advice deprived them of the opportunity to avoid conception or terminate the pregnancy. Bruggeman By and Through Bruggeman v. Schimke, 239 Kan. 245, 718 P.2d 635, 638. See also Wrongful conception; Wrongful life. Wrongful birth, Wikipedia
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Wrongful conception, Black's Law Dictionary, Sixth Edition. Also know as wrongful pregnancy, it is a claim by parents for damages arising from the negligent performance of a sterilization procedure or abortion, and the subsequent birth of a child. Miller v. Johnson, 231 Va. 177, 343 S.E.2d 301, 304. See also Wrongful birth; Wrongful life. Wrongful conception, Wikipedia
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Thank you Blake for sharing your story. You showed great courage and confidence with your comments.
You are an inspiration to all people. Blake's Channel
Velopharyngeal insufficiency - VPI - cleft palate
Velopharyngeal insufficiency, Wikipedia
Velopharyngeal insufficiency (VPI) is known as a failure of the separation between nose and mouth, because of an anatomical dysfunction of the
soft palate, the lateral or posterior wall of the pharynx.
The effect of such a dysfunction leads to functional problems with speech(hypernasality), eating and breathing. This gap can be treated surgically, although the operational technique which should be used is still controversial. The main object is to visualize the preoperative velopharyngeal dimensions and movements and adjust your postoperative goal upon these results. There are different diagnostic tools which can help visualize these movements and dimensions. This tools will be reviewed in this article.
The terms velopharyngeal "incompetence", "inadequacy" and "insufficiency" historically have been used interchangeably, although they do not necessarily mean the same thing. Velopharyngeal insufficiency includes any structural defect of the velum or pharyngeal walls at the level of the nasopharynx with insufficient tissue to accomplish closure, or there is some kind of mechanical interference with closure. It is important that the term insufficiency is used if it is an anatomical defect and not a neurological problem.
Velopharyngeal insufficiency (VPI) can be caused by a variety of disorders (structural, genetic, functional or acquired) and is very often associated with a cleft palate. Abnormal physiological separation of the oropharynx from the nasopharynx can lead to VPI and hypernasality. read more
Also see Foundation for Faces of Children YouTube Channel
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Eugene K. Pettis was installed as the 65th President of The Florida Bar June 28, 2013 at the Annual Convention. The Florida Bar Journal reported the historic event in an article by Jan Pudlow.
Mr. Pettis has an inspiring personal story, and an impressive career as a co-founding partner at Haliczer, Pettis & Schwamm in Ft. Lauderdale and Orlando. However Jan Pudlow began his story of Mr. Pettis recounting a childhood speech impediment.
The Florida Bar Journal - July/Aug. 2013 Vol. 87, No. 7
By Jan Pudlow
When Eugene Pettis was a little boy, a speech impediment smacked a "K" sound at the start of every word.
Neighbors would tell the other Pettis kids: "Go get your brother," because they wanted to hear Eugene talk for comical entertainment.
Lifelong friend and neighbor Lockey Anderson remembers Eugene called her "Kockey"; her dad Joe, "Koe"; and her mother Shirley, "Kirley."
They laughed, and little Eugene laughed with them.
But his first-grade teacher wasn’t laughing. When school officials said Eugene had to wait until the second grade to receive speech therapy, his first-grade teacher insisted: "No, he’s getting help this year."
Not only did Eugene get into the speech program as a first-grader, he can still remember the green and beige books his mother would lecture him on every night at the dining room table, pronouncing word after word until that "K" sound vanished.
"The neighbors still remember it as if it were yesterday. And now I make a living talking," Pettis said laughing. "Who would have thought that?"
Years later, after building a reputation as a successful civil trial lawyer, commanding the attention of jurors with his deep, sonorous voice, Pettis invited that first-grade teacher, along with his kindergarten teacher, high school basketball coach, and a few other special mentors to his home just to say thanks.
"Life had turned out pretty good for me, and I could look back with clarity and see that those six people, along with many others, had a hand in that," Pettis said. "While I was blessed with a great family, I’ve also been blessed with an even greater community of people." read more
Eugene K. Pettis - First African-America[...]
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Review of the Florida Bar Journal story of Eugene Pettis and speech issues, by Neil J. Gillespie
Mr. Pettis is correct in his assessment of speech.
His first-grade teacher who insisted on making speech therapy a priority in first-grade - and not waiting until second grade - was also correct. And the reaction of others to his childhood speech impediment is a textbook example of how a person with a speech impediment becomes "comical entertainment" for others.
Even now Mr. Pettis notes:
"The neighbors still remember it as if it were yesterday. And now I make a living talking," Pettis said laughing. "Who would have thought that?"
Who would have thought the neighbors would still remember his childhood speech impediment as if it were yesterday?
Competent professionals in the medical specialty, and his first-grade teacher who insisted on early intervention, and not waiting until second grade.
Mr. Pettis is also fortunate that his childhood speech impediment was correctable by speech therapy, and did not require reconstructive surgery for habilitation or rehabilitation.
After reading the Bar Journal article, I wrote to Mr. Pettis, in part:
Your personal story is inspiring. I wish you success as President. Thank you for sharing your personal struggles published in The Florida Bar Journal. Your disclosure of once having a speech impediment hits home for me. My speech impediment is velopharyngeal inadequacy, caused by a cleft palate, which impairment unfortunately persists despite a lifetime of treatment.
The First International Symposium for Long Term Treatment of CL&P, University of Bern, Switzerland reported,
"When an adult does not speak correctly, those around him notice it immediately, and speculate whether or not the affected person is of normal intelligence. For this reason, we feel that correct speech has many important consequences." (J. Weissen, 1979)
"From the beginning our team considered speech evaluation and speech therapy as most important, because receptive speech, i.e. that which one hears, is dependent on the entire environment (i.e. 360 degrees) as opposed to the operative cosmetic result which is only visual, i.e. maximal field of 180 degrees." (Weissen & M. Bettex, 1979)
Frances Cooke MacGregor noted:
"... the area in and around the mouth is both emotionally charged and strongly connected with one's self-image. As an instrument of speech and eating, as well as a mirror of emotions, it also has unique social and psychological implications and symbolic meaning. Any abnormality in this area, therefore, is not only highly visible and obtrusive but - as research has shown - tends to evoke a type of aversion which is both esthetic and sexual."
Sociologist Erving Goffman noted even a small defect in a person's communication equipment is enough to throw the listener off balance, and spoil the identity of a person.
"The closer the defect is to the communication equipment upon which the listener must focus his attention, the smaller the defect needs to be to throw the listener off balance. These defects tend to shut off the afflicted individual from the stream of daily contacts, transforming him into a faulty interactant, either in his eyes or in the eyes of others".
The Sopranos - Season 1, Episode 10 - "A Hit Is a Hit"
Tony regrets his decision to play golf with Cusamano and his friends... Later, Tony discusses the incident in therapy with Dr. Melfi, and how he felt used for the amusement of others, much like his speech-impeded high school friend with a cleft palate, Jimmy Smash, whom they made fun of because of his speech impediment. Tony learned years later that Jimmy was crying himself to sleep every night and is currently serving a 20 year prison sentence for robbery and was easily identified because of his speech impediment....watch here
Justice Stevens Decided to Retire After Stumbling
During Citizens United Dissent
ABA Journal Law News Now
By Debra Cassens Weiss
April 29, 2011
Justice John Paul Stevens decided to retire on Jan. 21, 2010, the day he read aloud his dissent in the Citizens United case and stumbled in his delivery.
In an interview with the Atlantic, Stevens, now 91, said doctors found no problem, despite a faltering presentation. Nonetheless, "that was the day I decided to resign," he told the publication. "I learned giving that talk that I had a speech problem." read more
The Blog of Legal Times quoted Justice Stevens April 28, 2011:
"That was the day I decided to resign,"...Stevens said, "I learned giving that talk that I had a speech problem."
The Wall Street Journal also quoted Justice Stevens about his decision to step down from the Supreme Court because he learned he had "a speech problem" when he read aloud Jan. 21, 2010.
Justice Stevens retired due to speech pr[...]
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"Speech is a mirror of the soul; as a man speaks, so is he."
- Publilius Syrus, circa 42 B.C.
"I Have a Dream" is the name given to the famous public speech by Martin Luther King, Jr., in which he called for racial equality and an end to discrimination. King's delivery of the speech (YouTube) on August 28, 1963, from the steps of the Lincoln Memorial during the March on Washington for Jobs and Freedom, was a defining moment of the American Civil Rights Movement. Delivered to over 200,000 civil rights supporters, the speech is often considered to be one of the greatest and most notable speeches in human history and was ranked the top American speech of the 20th century by a 1999 poll of scholars of public address. Read more
ABA Journal, Law News Now
By Debra Cassens Weiss
December 04, 2014
Generally, people speaking with a low voice are perceived as dominant and those speaking with a high voice are perceived as
But scientists studying the voices of male political leaders in several countries say charismatic leaders use both extremes when speaking to large crowds, though they speak in low tones and stretch their voice less when speaking to other leaders, the Wall Street Journal (sub. req.) reports.
Similarly, a study of the speech patterns of business leaders found that Apple chief executive Tim Cook and the late Steve Jobs also had charismatic speech patterns. read more
American Psychological Association (APA), Bullying
- Bullying is a form of aggressive behavior in which someone intentionally and repeatedly causes another person injury or discomfort. Bullying can take the form of physical contact, words or more subtle actions.
- The bullied individual typically has trouble defending him or herself and does nothing to "cause" the bullying.
APA Resolution on Bullying Among Children and Youth
In Florida, bullying behavior may be a crime under Chapter 784, Florida Statutes, section 784.048 Stalking; definitions; penalties.
Below is part of the statute, which can be viewed online at the link above. Other states may have similar laws.
Section 784.048(1) As used in this section, the term:
(a) "Harass" means to engage in a course of conduct directed at a specific person which causes substantial emotional distress to that person and serves no legitimate purpose.
(b) "Course of conduct" means a pattern of conduct composed of a series of acts over a period of time, however short, which evidences a continuity of purpose. The term does not include constitutionally protected activity such as picketing or other organized protests.
(2) A person who willfully, maliciously, and repeatedly follows, harasses, or cyberstalks another person commits the offense of stalking, a misdemeanor of the first degree, punishable as provided in s. 775.082 or s. 775.083.
(5) A person who willfully, maliciously, and repeatedly follows, harasses, or cyberstalks a child under 16 years of age commits the offense of aggravated stalking, a felony of the third degree, punishable as provided in s. 775.082, s. 775.083, or s. 775.084.
(6) A law enforcement officer may arrest, without a warrant, any person that he or she has probable cause to believe has violated this section.
The White House Conference on Bullying Prevention
March 10, 2011
"If there’s one goal of this conference, it’s to dispel the myth that bullying is just a harmless rite of passage or an inevitable part of growing up. It’s not." That’s how the President explained the first-ever White House Conference on Bullying Prevention during the opening session of the day-long summit. And judging by the attention, passion, and intense interest that the issue has generated over the past few days, it’s a sentiment that millions of Americans share, and hopefully all of this discussion will help those who want to break unfortunate traditions to realize they’re not strange or alone.
- U.S. Department of Education, Office for Civil Rights
Published on Aug 14, 2014
Bullying, Harassment, & Civil Rights: An Overview of School Districts’ Federal Obligation to Respond to Harassment
This video has been developed as part of collaboration among the U.S. Departments of Education and Justice, and the Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services. The video is designed to help schools, parents, and others who interact with kids understand the differences between harassment and bullying, and their legal obligations with respect to both.
DEPRIVATION OF RIGHTS UNDER COLOR OF LAW Summary:
Section 242 of Title 18 makes it a crime for a person acting under color of any law to willfully deprive a person of a right or privilege protected by the Constitution or laws of the United States.
For the purpose of Section 242, acts under "color of law" include acts not only done by federal, state, or local officials within the their lawful authority, but also acts done beyond the bounds of that official's lawful authority, if the acts are done while the official is purporting to or pretending to act in the performance of his/her official duties. Persons acting under color of law within the meaning of this statute include police officers, prisons guards and other law enforcement officials, as well as judges, care providers in public health facilities, and others who are acting as public officials. It is not necessary that the crime be motivated by animus toward the race, color, religion, sex, handicap, familial status or national origin of the victim.
The offense is punishable by a range of imprisonment up to a life term, or the death penalty, depending upon the circumstances of the crime, and the resulting injury, if any.
President George W. Bush addressed the United Nations General Assembly in one of his finest moments, in support of the UDHR September 25, 2007 at its 60th Anniversary. We should expect our leaders and government to act in accord with their spoken ideals.
Article 25. Universal Declaration of Human Rights
- (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
- (2) Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.
U.S. State Department, International Disabilty Rights
Surrogate offered $10,000 to abort cleft-afflicted baby
Surrogate offered $10,000 to abort baby
By Elizabeth Cohen, Senior Medical Correspondent
updated 2:58 PM EST, Wed March 6, 2013
Crystal Kelley was offered $10,000 to have an abortion after ultrasounds showed the baby she was carrying for another couple had severe medical problems. Click through the gallery to see how Kelley's gut-wrenching surrogacy story played out. Read more
Surrogate offered $10,000 to abort baby [...]
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Convention on the Rights of Persons with Disabilities
Convention on the Rights of Persons with Disabilities
1. States Parties shall take effective and appropriate measures, including through peer support, to enable persons with disabilities to attain and maintain maximum independence, full physical, mental, social and vocational ability, and full inclusion and participation in all aspects of life. To that end, States Parties shall organize, strengthen and extend comprehensive habilitation and rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, in such a way that these services and programmes:
- Begin at the earliest possible stage, and are based on the multidisciplinary assessment of individual needs and strengths;
- Support participation and inclusion in the community and all aspects of society, are voluntary, and are available to persons with disabilities as close as possible to their own communities, including in rural areas.
2. States Parties shall promote the development of initial and continuing training for professionals and staff working in habilitation and rehabilitation
3. States Parties shall promote the availability, knowledge and use of assistive devices and technologies, designed for persons with disabilities, as they relate to habilitation and rehabilitation.
American Bar Association (ABA): Convention on the Rights of Persons with Disabilities.
Under Secretary, Civilian Security, Democracy, and Human Rights
Appendix A: Universal Declaration of Human Rights (PDF)
Appendix B: International Covenant on Civil and Political Rights
Annex A to the Common Core Document of the U.S. State, Local, Tribal, and Territorial Human Rights Organizations and Programs
Remarks by President Obama at the New Economic School, July 7, 2009, the United States of America presents its Fourth Periodic Report to the United Nations Human Rights Committee concerning the implementation of its obligations under the International Covenant on Civil and Political Rights ("the Covenant" or "ICCPR"), in accordance with Covenant Article 40.)
New York, 16 December 1966
Resolution adopted by the General Assembly [Part A of General Assembly resolution 217 (III). International Bill of Human Rights]
217 A (III). Universal Declaration of Human Rights
The Universal Declaration of Human Rights link page
.....Failed birth defect legislation in the United States....
The Treatment of Children’s Deformities Act was proposed and rejected over and again. In 2005, for example, the bill died in committee. https://www.govtrack.us/congress/bills/109/hr1000
The names of these bills - Children’s Deformities Act - are patronizing to afflicted adults; a birth defect is a life-time commitment requiring extraordinary treatment and expense.
- Oral and Maxillofacial Surgeons applaud Congresswoman McCarthy's legislation to require insurance coverage for children with congenital deformities
- The American Society of Plastic Surgeons (ASPS) applauds introduction of CARES Act of 2011
ASPS Applauds Introduction of Legislation to Increase Access to Reconstructive Surgery for Children