LRP Title:

The commonly violated rights of pediatric patients with Down syndrome

Thesis Statement: Recognition of the commonly violated rights of pediatric patients

with Down syndrome is crucial to safeguarding their full potential on equal footing with
those that lack the aforementioned condition.
I. Introduction
A congenital anomaly is a condition present at the time of birth which varies from
that of the natural standard.

Down syndrome (DS) is classified as a congenital

chromosomal anomaly syndrome characterized by a well-known pattern of minor and

major anomalies and associated with excess chromosomal 21 material (pek, 2010).
Down syndrome is characterized by mental retardation, a characteristic facial
appearance, and multiple malformations that varies in severity.

People with down

syndrome are associated with a major risk for heart problems, a lesser risk of duodenal
atresia (partially undeveloped intestines), and a minor but significant risk of acute
leukemia. Research conducted by the Mayo Clinic in the United States of America
shows that it is the most common genetic cause of learning disabilities in children.
As define by British Columbia's Ministry of Social Development, a person with
disabilities (PWDs) is a person with a physical or mental impairment who is significantly
restricted in his or her ability to perform daily living activities either "continuously or
periodically for extended periods" and, as a result of these restrictions, requires
assistance with daily living activities. Assistance may come from another person, an
assisting animal, or an assistive device. Even so, the human rights for people with
disability and people without disability are one and the same.
Sociology defines each human beings as different thus implemented the human
rights act to be followed whereas all should be treated equally regardless of color,
gender, race, or even disabilities (International Encyclopedia of the Social Sciences,
1968). In a community, it is only ethical to be civil despite the differences of others.
Atienza, Latonio, Torres

Psychology states that human rights are related to the problem of ethnocentricity.
Ethnocentricity exists when people tend to think of themselves standing in a higher
position than others. The mistreatment of the disabled occurs because they seem
different in an inferior way (Griffin, 2008).
Theoretically, human rights have been implemented for a strong intention to
have a stand in times of abuse and discrimination.
According to Moltmann (n.d.), the formation and recognition of human rights had
theological basis. He explains that human beings truly become 'human' by recognizing
each and everyone's dignity, and disregarding this dignity of human beings is destroying
it. He furthers that the belief that humanity was made in the image of God is important in
all theological statements on human rights.
The world doesn't have a single book of laws that is universal in its application.
Instead, there are several sets of rules that are uniquely different and solely applicable
to specific people in specific places. Although in the biological sense humans are one
and the same, the difference lies in the learned customs, or what is known as culture,
that shapes an individual as a member of society. A child, no matter from what culture,
is the most vulnerable member of a societal unit.
Upon the decision of leaders around the world, a convention was designed for
minors, people under 18 years old, because of their need for care and protection that
adults do not require. In line with this, the United Nations, an inter-governmental
organization that is devoted to maintenance of peace and security among nations,
approved of the United Nations Convention on the Rights of the Child in 1989,
according to Verhellen (2009, p. 32). The UNCRC (United Nations Convention on the
Rights of the Child) is a comprehensive framework of principles underlying the ideal
treatment of children around the world. The convention subjects its rights and the
exercise thereof to children of ages under 18. Following this, the Philippine government
ratified the convention in 1990 through the Senate Resolution 109 as stated by the
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Council for the Welfare of Children (2009). Subsequent to this, the Philippines designed
a framework for the welfare of the children, which is incorporated in the National Plan
for Children by virtue of the Council for the Welfare of Children. Currently, the policy
framework is the groundwork to realizing the vision of the Philippines in recognizing and
protecting the rights of the minors. By ratification of the Philippine government of the
Convention, the Philippines thereby conforms to the Convention's obligations of
safeguarding children's rights and taking proper actions consistent with the best
interests of the child.
The UNCRC, inclusive of 54 articles, established itself based on four basic
human rights that children require: 1) the right to survival; 2) the right to develop; 3) the
right to be protected; 4) the right to participate. Moreover, on the word of UNICEF
(2008), the convention revolves around four key principles and rights which all other
rights are patterned after: 1) right to non-discrimination; 2) right to a child's best
interests; 3) right to life, survival and development of the child; 4) respect to express
views. Todres, Wojcik, and Revaz (2009) retell four of the 54 articles, built on the 4 key
principles to introduce specific measures in safeguarding childrens rights, are as
follows: 1) Article 2: The right to non-discrimination of any form, as well as the dutiful act
of the state to eliminate any form of discrimination, likewise to the disabled.; 2) Article 3:
Public and private sectors must take into consideration the best interest of children.
Organizations supervising children must comply with the conventions provisions; 3)
Article 6: The child's right to life and state's duty to safeguard survival and development
of child; 4) Article 12: The childs right to be able to express his or her own opinions and
given due consideration suitable to the childs age and maturity (p. 9).
In the 1980s, recognition of the disabled people's disadvantageous condition
escalated and a human treaty for people with disabilities was in debate. In 2004, a draft
of a human rights treaty for people with disabilities was designed and the Convention on
the Rights for People with Disabilities was completed on 2006, from the report of Stein
and Lord (n.d. p.21). As stated by De Jesus (2009), on September 25, 2008, the

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Philippines signed the United Nations agreement on the CPRD (Convention on the
Rights of Persons with Disabilities.) The signatory appointed the country to act in
accordance to the convention's rights. On the other hand, as said by Lansdown (2009),
it was taken into account, that although disabled adults and children alike experience
difficulties, however at varying degrees, there had been only vague acknowledgment of
the disabled children's views on the issues affecting them. Minors and adults with
disabilities have different experiences and concerns, hence the rights of the children
with disabilities should not be presumed to be the same with the universal code of rights
of people with disabilities (p.21).
As stated by Lansdown (2009) without intensively distinguishing the issues
children with disabilities are faced with, the CRPD could be mistaken to be for adults
only (p.69), hence the following articles of CRPD are narrowed down and correlated to
the aforementioned key principles in UNCRC: 1) Non-discrimination - Articles 2, 3, 4, 5,
6, 8: The right to equality of opportunity and non-discrimination on the grounds of
disability and duty of the state to safeguard this equality and take measures to carry this
out.; 2) Best interests - Articles 7, 16: The best interests of children with disabilities
must be highly accounted for and must be under intensive care of supervisors.; 3) Right
to life - Articles 10, 25: The right to life and to be ensured of equality on the grounds for
people, including children with disabilities and states should not discriminate people with
disabilities by denying them healthcare.; 4) Right to express views - Articles 3, 7: The
right to full and effective participation and to express views given due consideration
suitable to disabled childs age and maturity, provided with support for disabilities to
execute this provision (p.68).
Creating

these

rights

is

just

as

essential

as

monitoring

the

proper

implementation. To facilitate children with disabilities in furthering their assurance of

their rights means understanding what disabilities are and their concerns and needs as
disabled people.

Recognition of the commonly violated rights of pediatric patients with

Atienza, Latonio, Torres

DS is crucial to safeguarding their full potential on equal footing with those that lack the
aforementioned condition.
II. Body
People with disabilities tend to be marginalized by society, an occurrence which
Down syndrome patients are not foreign to. Denial of opportunities, may it be an
opportunity to attend school, to be around in public places, to travel, and if worse comes
to worst, to live life itself, is a common ground for many DS patients. According to
Joseph (2009), Dr. Hylton Meire reveals in his article "Is Ultrasound as Useful as We
Think?" that pre-natal testing for Down's and Edward's syndrome conjures false
positives. As a consequence, for every 50 cases of Down's or Edward's detected, 160
health babies are said to be "lost" (p.161). Without reassurance of their Down's or
Edward's, 160 healthy babies' lives are renounced, with the intention of eliminating 50
babies with the said disability. Dr. Meires study is an implication of societys extreme
discriminatory attitudes and moral issues. Furthermore on the word of Joseph (2009),
429 abortions were performed on DS babies in 2005 alone as revealed by Londonbased Lejeune Clinic for Children with DS (p.161).
In addition to that, Lansdown (2009) provides an overview of discrimination
against Down's Syndrome babies in 1999: 1) A mother told people would be horrified to
see her baby and to keep her baby would be impractical; 2) Health professionals used
the term 'happy idiots' to describe Down Syndrome babies; 3) A health professional
settled not to provide pain relief to a six-month-old baby after heart surgery with the
frame of mind that DS babies do not feel pain; 4) A mother was told by a consultant that
her child's heart condition was beyond repair without performing due examination; 5)
Parents were driven away and advised to make another baby (p.87). Besides this,
Cohen, Nadel and Madnick (2002) cite a report wherein parents were advised by health
care professional to have their infant diagnosed with DS placed in an institution where it
would not be able to interact with family (p.442). Bluntly put, marginalization had long
been implemented on DS patients, even as they were infants. Taking everything into
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account, this is in direct violation of childrens inherent right to life and to be ensured of
equality. By far, the practice of abortion on children with DS is the ultimate rejection of
their humanity and of the whole community of people with disabilities.
Even parental neglect is evident. Landsdown (2009) cites that a Palestinian
teenager was kept in a barred cage with only bread and water to eat. She was hosed
down to keep her clean. Other mothers threatened their children that she would be let
loose to punish them. After 14 years of being tethered with sheep, she made sheep-like
voices. Also, in Zambia, a disabled child was locked inside for 15 years for the reason
that his parents were ashamed of having him. The child was never given a bath and
was left contaminated with faeces (Landsdown, 2009). In Nigeria, another similar case,
a five-year-old girl with cerebral spinal meningitis as well as learning difficulties and
physical impairments was locked into a specially built hut on her fathers farm for two
years. Her stepmother refused to let her into the house because she was doubly
incontinent, she ate the hay she slept on and emptied her bowels into the grass she
chewed. Her plight was discovered because her father approached street cleaners for
any left-over scraps, which they believed were to be given to a puppy (Landsdown,
2009).
In the same way that pediatric Down syndrome patients are faced with
discrimination in health care settings, schools are not always accessible to them.
According to United Nations Organization for Education, Science and Culture (2012),
approximately 90% of 120 to 150 million children with disabilities under 18 years of age
in developing countries are reported to be not attending school. There are numerous
explanations for this discrepancy; however, along the lines of Down syndrome patients,
they are less likely to attend the same schools as children without disabilities do due in
part to disrespect for difference. To prove a case of discrimination in schools involving
DS pediatrics, Keeffe-Martin (n.d.) cites a case wherein a student with DS was not readmitted in the same school after pre-school and was advised to enrol in another school
(p.14). Refusal of entry into its school and advisory to transfer to a "suitable" school, in

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its basic sense, identifies indirect discriminatory effect. Quoted on UNICEFs Voices of
Youth website, a girl, 17, says, Given there are special schools for disabled children,
but sometimes such establishments only serve to isolate the children from mainstream
society.
Such educational barriers fail to abide by the principle of equality of opportunity
and non-discrimination on the grounds of disability. Case in point, this condones
segregation of children with disabilities from those with none and registers failure to
recognize their right.
An account by Fox News on September 2012 retells the story of 16 year old
Bede who was diagnosed with DS and denied the right to non-discrimination. He was
not allowed to board his flight, with his parents, for reasons that he is a security threat
according to airline personnel. This accusation by the airline personnel was refuted with
a video of a calm Bede waiting to board the plane caught on tape by his mother.
Discrimination towards people with DS has been evident around the globe, and it is one
thing humans should be concerned about.
III. Conclusion
Discrimination towards children with Down syndrome starts even before birth. An
unborn child diagnosed with Down syndrome upon pre-natal testing is denied his right
to survival by the parents choice, and sometimes upon the insistence of medical
professionals, of getting an abortion. This is considering the possibility that there would
have been a misdiagnosis on the part of the physician.
This mentality of discrimination and an elaborate list of violations of rights grow
and follow the child with DS to maturity and even beyond that. Documented cases of
schools denying enrolment to a child with DS on the grounds that there are special
schools intended solely for the commodity of these special children are common and
are an indirect discrimination. These then turn into a violation of three out of four

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principal rights that a child is entitled to, the right to non-discrimination, the right to a
child's best interest, and the right to development.
What does discrimination do to a person? It gives nothing more than a limitation
to what can and cannot be done according to how the majority of people see it. In a
more literal sense, a child with DS was not allowed to board the plane upon being
labelled as a security threat to other passengers.
This discrimination, whether it is direct or indirect in its form and purpose, is the
key term to describe the summary of the violations of rights done towards or against
children with DS. It is counter-productive and serves only to place strain in the society.
There have been laws established to serve as a protection for children with
disabilities, yet discrimination towards them still happens in everyday life. This time, it is
up to the people around them to follow these laws set to order and work towards
insuring and safeguarding the potential of each individual to achieve equity within the
society of people of any age, of any culture, with or without disability.

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