Down Syndrome - A Beacon Of Hope - Transforming Lives With Awareness And Inclusive Legislation
Author: LawSphereX
Category: International Law
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DOWN SYNDROME: A BEACON OF HOPE -
TRANSFORMING LIVES WITH AWARENESS AND INCLUSIVE LEGISLATION Nishita Singh, LL.M., Faculty of Law, University of Lucknow Anurag Patel, LL.M., Faculty of Law, Shri Ramswaroop Memorial University, Lucknow
ABSTRACT
Down syndrome, sometimes called Trisomy 21, is caused by an extra copy of the 21st chromosome and is a hereditary condition rather than a disease. It is a genetic disorder that leads to serious developmental issues. This chromosomal anomaly was initially described by English physician John Langdon1 in 1866. Significant developmental issues are caused by this intellectual disability worldwide. Although derogatory and out-of-date labels like “mongoloids” have been used, the emphasis should be on acknowledging people with Down syndrome as important members of society. They still face significant obstacles to full inclusion and equal rights, including discrimination in the workplace, in schools, and in the medical field, despite changing cultural perceptions.
The National Down Syndrome Society and the Down Syndrome Federation of India are two important organizations that support this population. It takes inclusive policies and practices to achieve fair access to opportunities and services. To address the particular difficulties experienced by individuals with Down syndrome, it is imperative to think about passing new laws, changing current ones, or establishing new rights. Resilience stories demonstrate how hard work and inventiveness can lead to good transformation and show that, with the right assistance, people with Down syndrome can have autonomous, fulfilling lives. The goal is to promote a more inclusive society that upholds and protects the rights and dignity of people with Down syndrome by examining the legislative frameworks that are in place and pushing for policy changes.
Keywords: Down syndrome; Trisomy 21; Minority group; Legal and Social Barriers; Inclusive policies; Equal rights; Legislative action.
1 Schnebly, Risa Aria, Fitzgerald, Grace, John Langdon Down (1828–1896), EMBRYO PROJECT
ENCYCLOPEDIA, (August 12, 2021), ISSN: 1940-5030 https://hdl. handle. net/10776/13304 UNDERSTANDING DOWN SYNDROME “We have the same wants and dreams as everyone else. We can do anything anyone else can do. We are more alike than we are different. - Manager of Advocacy at the National Down Syndrome Society” According to WHO (World Health Organization), “Disability results from the interaction between individuals with a health condition such as cerebral palsy, Down syndrome and depression as well as personal and environmental factors including negative attitudes, inaccessible transportation and public buildings, and limited social support”2. In India and around the world, Down syndrome is a genetic disorder that leads to serious developmental issues. People with this medical condition are born with an extra copy of their 21st pair of chromosomes.
Trisomy 213 is the word used to describe this disorder. Such individuals have a total of 47 chromosomes instead of 46, even though most people are born with 23 pairs. It causes developmental issues and intellectual disabilities4, and its severity varies from person to person. This chromosomal anomaly was initially described by English physician John Langdon5 in
1866. It has since existed on its own in medical literature. But it wasn’t until 1959 that Parisian
physician Dr. Jerome Lejeune discovered a connection to chromosome 21.6 The presence of all or a portion of a third copy of chromosome 21 causes Down syndrome, one of the most prevalent genetic diseases that affect people from birth. About 1 in 800 babies are born with it, and the likelihood increases as the mother becomes older. Based on the racial classification, this group of people was also called “mongoloids”7 and the Tungekar, B, Analysing Rights of Persons with Disability Act (July 2, 2021), https://blog.ipleaders.in/analysis-rights-persons-with-disability-act-2016/ Down syndrome - Symptoms and causes. (n.d.), MAYO CLINIC (Nov 12, 2024) https://www.mayoclinic.org/diseases-conditions/down-syndrome/symptoms-causes/syc-20355977 Intellectual disability, CLEVELAND CLINIC (May 1, 2024), https://my.clevelandclinic.org/health/diseases/25015-intellectual-disability-id
5 Schnebly, Risa Aria, Fitzgerald, Grace, John Langdon Down (1828–1896), EMBRYO PROJECT
ENCYCLOPEDIA, (August 12, 2021), ISSN: 1940-5030 https://hdl. handle. net/10776/13304 6 Eric P, Dr. Jerome Lejeune Dies at 67; Found Cause of Down Syndrome, NEW YORK TIMES (April 12, 1994), https://www. nytimes. com/1994/04/12/obituaries/dr-jerome-lejeune-dies-at-67-found-cause-of-downsyndrome. html 7 Ananya M, Down Syndrome history, NEWS-MEDICAL (June 17, 2023), https://www. newsmedical. net/health/Down-Syndrome-History. aspx sickness was called “mongolism”. 8 Later, the National Institutes of Health in the United States suggested using the name “Down syndrome” to completely eliminate the previous nomenclature for similar phenotypic traits, and the World Health Organization dropped the term “mongolism” in 1965. Children with Down syndrome are easily distracted by their surroundings and have a short attention span.
It is important to note that these kids exhibit admirable virtues like sensitivity and friendliness. SOME COMMON CHARACTERISTICS OF PEOPLE WITH DOWN SYNDROME Due to specific physical traits, Down syndrome is frequently detectable at birth. These characteristics, which become more noticeable as the person gets older, can include a head that seems smaller than normal and a flattened facial profile. Additionally, people with Down syndrome may have a short neck and a protruding tongue. A condition called palpebral fissures occurs when the eyelids frequently tilt upward. The ears may be smaller or have an odd shape. Hypotonia, or poor muscle tone, is another prevalent feature. The palms may have a single crease rather than the usual two, and the hands may be small and broad. The hands and feet may be smaller than the rest of the body, and fingers are typically somewhat short.
It is also common to see excessive joint flexibility. Brushfield’s spots are little white spots that some people may have on the iris of their eyes. Finally, compared to their classmates, people with Down syndrome are frequently shorter. 9 LIFE EXPECTANCY OF PEOPLE WITH DOWN SYNDROME These children’s lifespans have significantly grown over time. They used to only live for five to ten years in the past. They are now anticipated to survive for 60 years or longer, depending on their living circumstances and the severity of their health issues, thanks to advancements in medical research, the use of antibiotics, and parental care. Therefore, it can be concluded that, although not always, people with Down syndrome have a longer life expectancy. SITUATION IN INDIA According to research done by the Down Syndrome Federation of India (DSFI), between
8 Stollznow, K., PhD. How did Down syndrome get its name?, PSYCHOLOGY TODAY (September 30, 2021),
https://www.psychologytoday.com/us/blog/speaking-in-tongues/202109/the-offensive-past-the-term-useddown-syndrome?msockid=2895b446bc4865240d84a01bbd4e64d7
9 Supra note 4
35,000 and 40,000 children are born with this syndrome in India each year. 10 These youngsters, along with their parents and families, face many challenges as a result of the lack of awareness of this ailment and the limited medical facilities. Even though they make up a sizable percentage of the population, people with Down syndrome continue to face discrimination and lack of acceptance in society. They are ghosted and this isolation leads to social disapproval which has suppressed them until now. This needs to be changed as these children can lead to a normal life by training and educating them. The only difference is that they require little extra care and effort than the normal children. The topic of why these people are denied basic human rights should be brought up if we discuss the rights that are promised to every individual just by virtue of their birth as human beings.
The Constitution of India sets forth equality before the law or equal protection of the laws within the territory of India. It states that “the State shall not deny to any person equality before the law or the equal protection of the laws within the territory of India. ”11 The right to live with dignity was included to the definition of Article 21 of the Indian Constitution in the Manek Gandhi vs Union of India12 case. Despite being a minority group, people with Down syndrome have a right to a life of dignity. No one’s right to life may be unilaterally taken away from them. “All human beings are born free and equal in dignity and rights,” according to Article 1 of the Universal Declaration of Human Rights.
“Without distinction of any kind, such as race, color, sex, language, religion, political or other opinion, national or social origin, property, birth, or other status,” according to Article 2, the declaration’s guarantees of rights and freedoms apply to all people. LEGISLATIVE FRAMEWORK IN INDIA There are currently no special provisions for individuals with Down syndrome in India’s legal system. Even if this was true in the past, the Right of Persons with Disabilities (RPwD) Act of 10 ET Online, World Down Syndrome: Know all about the genetic condition affecting more than 30K children in India. THE ECONOMIC TIMES, (March 2, 2023) https://economictimes. indiatimes. com/magazines/panache/world-down-syndrome-know-all-about-the-geneticcondition-affecting-more-than-30k-children-in-india/articleshow/98859156. cms? from=mdr
11 INDIA CONST. art. 14
12 Manek Gandhi vs Union of India [1978] 2 S.C.R. 621
2016 has since been passed. Although this act does not directly address Down syndrome, it
does have immediate effects and indirectly establishes measures. The Right of Person with Disabilities Act 201613 is a progressive law that has expanded the definition of “disability” and ensures that people with disabilities have equal rights, opportunities, and dignity in all spheres of life. By replacing the previous Persons with Disabilities (Equal Opportunities, Protection of Rights, and Full Participation) Act, 1995, which only addressed seven types of disabilities, with the United Nations Convention on the Rights of Persons with Disabilities (UNCPRD)14, which India has ratified, the act demonstrates India's commitment to international human rights, particularly UNCPRD.
With 21 different forms of disabilities divided into three categories, the recently introduced act meets the needs of a diverse set of people with physical, mental, intellectual, and sensory impairments: • Person with benchmark disability: One is said to have a benchmark disability if they are officially classified as having a disability of at least 40%. • Person with disability: Any individual who has a physical, sensory, intellectual, or mental impairment that limits their capacity to do daily tasks or completely integrate into society is considered to have a disability. • Person with disability having high support needs: A disabled person who needs significant assistance to manage everyday chores is said to have high support needs. The degree of help required might change and differ from person to person.
While some people may depend on support for every part of their lives, others may just require assistance in some areas. It provided a thorough definition, moving from the medical model of disability to the social model, recognizing that societal restrictions as well as personal disabilities contribute to impairment. 13 National Human Rights Commission, Disability Rights (Rights of Persons with Disabilities Act & National Trust Act) and Mental Healthcare Act (2021), https://nhrc. nic. in/sites/default/files/DisabilityRights. pdf. 14 United Nations Convention on the Rights of Persons with Disabilities - National Disability Authority, NATIONAL DISABILITY AUTHORITY (n. d. ), https://nda.
ie/disability-policy/uncrpd SAMAGRASHIKSHA SCHEME Samagrashiksha scheme15 is a comprehensive program run by the Department of School Education and Literacy (DoSE&L) that covers the whole spectrum from preschool to class XII. According to information provided by Union Minister for Education Ministry Shri Ramesh Pokhriyal “Nishank” in a written response in the Rajya Sabha today, it discusses the idea of “Inclusive Education for Children with Special Needs (CWSN). ”16 With regard to all 21 categories included in the RPwD Act of 2016, including developmental disorders, intellectual impairment, and Down syndrome, the idea is to mainstream special needs children in regular schooling in an inclusive manner. In order to provide CWSN with high-quality education, skilled teachers collaborate with regular teachers in schools and work iteratively to meet the unique needs of CWSN students.
The 2020 National Education Policy also includes these clauses. 17 THE DOWN SYNDROME FEDERATION OF INDIA In South India, DSFI18 is one of the few centers of its kind dedicated to fostering and establishing a supportive environment for individuals with Down syndrome in both the family and the community. It seeks to provide people with Down syndrome with therapeutic and supporting services as well as a protracted recovery. Since its founding in 1984 with just six children, the federation has grown to help countless children throughout India through a variety of institutions. The federation provides a number of services, including: • Counseling distraught families, • Training children to overcome their shortcomings,
15 Samagra shiksha. (n.d.). https://samagra.education.gov.in/about.html
16 Samagra shiksha. (n.d.-b). https://samagra.education.gov.in/inclusive.html
17 Kumar, Dr., & Singh, India’s New Education Policy (NEP) 2020 creating children with disability,
INTERNATIONAL JOURNAL OF ADVANCED RESEARCH IN SCIENCE COMMUNICATION AND TECHNOLOGY (Feb, 2022) https://www.researchgate.net/publication/358417851_India's_New_Education_Policy_NEP_2020_Creating_Chi ldren_with_Disability
18 About DSFI - Down Syndrome Federation of India, DOWN SYNDROME FEDERATION OF INDIA (Feb 15,
2021), https://downsyndrome.in/about-dsfi/
Providing physiotherapy, speech therapy, • Spreading awareness about Down syndrome, • Research programs, • Specialize out-patient services • Health and medical camps • India International Down Syndrome Conference (IIDSC), etc. In order to help parents, caregivers, medical professionals, therapists, and individuals with Down syndrome, DSFI launched IIDSC in 2017 with the goal of bringing specialists to one platform. In 2017, it was held for the first time in New Delhi, with Mr. Yuri Afanasiev, the UN Resident Coordinator, serving as the Chief Guest. Since he is the parent of a child with Down syndrome, he has firsthand experience with what it's like to be a parent of a child with this condition. The event was also held in Chandigarh in 2019; Raipur in 2020; and Pune in 2018, however it was postponed because of curfew.
For parents and other members of society, these incidents served as a wake-up call. • Mothers only meet • Financial and social support • Seminars and webinars • Down syndrome course (started in 2019), etc.
NATIONAL DOWN SYNDROME SOCIETY Barton and Betsy Goodwin established the National Down Syndrome Society (NDSS)19 in
1979. When they discovered that their daughter Carson Goodwin had Down syndrome, they
devoted their time to learning more about the illness. Carson and other kids with similar National Down Syndrome Society, NATIONAL DOWN SYNDROME SOCIETY (n. d. ), https://ardownsyndrome. org/wp-content/uploads/2016/09/NDSS-Brochure. pdf conditions were given the chance to develop and learn. Today As a modern American organization, NDSS works to enable individuals with Down syndrome and their families to lead comfortable lives by partnering with community members and offering them resources. The way the public views this institution has changed dramatically. Its goal is to become a preeminent human rights organization that advocates for the rights of people with Down syndrome. Some of its major achievements till now are: • The group started working to raise public awareness about Down syndrome in the 1980s.
In order to raise public awareness of Down syndrome, they started their first awareness campaign with the baseball-themed PSA “Give These Kids a Chance to Bat,” which appeared in Times magazine and numerous other publications. • In 1980, the NDSS held its first scientific symposium, titled “The Molecular Structure of 21st Chromosome and Down Syndrome,” one of the 14 that have been held to date. • To encourage the integration of these kids in mainstream schools, the NDSS worked on ‘Project Mainstream’20 in 1980 as a demonstration model. Twelve kindergarteners with Down syndrome were selected from four district schools for this purpose, and they will spend a portion of each day in a conventional classroom setting to become accustomed to it. • The NDSS’s unwavering efforts have led to the global recognition of October as Down Syndrome Awareness Month21.
• “News and Views Magazine,” a publication created by and for people with Down syndrome, was introduced by NDSS in 1990.
20 Inclusive Education Guidelines, NATIONAL DOWN SYNDROME SOCIETY (NDSS) (n.d.),
https://ndss.org/inclusiveeducationguidelines#:~:text=The%20document%20addresses%20the%20education,early%20intervention%20an d%20primary%20education
21 When is Down Syndrome Awareness Month? Key Dates and Significance Explained (February 11, 2024),
https://thet21journey.com/when-is-down-syndrome-awareness-month-key-dates-and-significance-explained/
In 2000, the NDSS established a project called “Everyone Counts: Teaching Acceptance and Inclusion” to foster integration amongst students with and without disabilities by fostering peer support. • NDSS launched the O’Neill Tabani Enrichment Fund in 2005. Through this initiative, adults with Down syndrome received financial support. More than $250,000 has been granted so far. • The “Prenatally and Postnatally Diagnosed Conditions Awareness Act”22 was passed after the 2008 election. In order to pass this act, NDSS started the legislative procedure. • On December 19, 2014, one of the legislative priorities, the Achieving the Better Life Experience (ABLE) Act, NDSS, was passed. With this statute, individuals with Down syndrome might enjoy their lives to the fullest without jeopardizing other private services like Medicaid, insurance, beneficiary rights, and others.
• The NDSS ran the END #LAWSYNDROME campaign in 2017, sought to overturn discriminatory legislation that prevent people with Down syndrome from developing and exercising their autonomy without impairing their ability to receive Medicaid benefits. • The NDSS held its first Adult Summit in 2018 with the goal of making sure that all families and caregivers of individuals with Down syndrome receive the pertinent and crucial information. The symposium, which focused on the issues faced by adults with disabilities, was the first of its kind. • The NDSS introduced its first Barbie doll with Down syndrome in 2023 in an effort to broaden their image and represent a range of talents and cultures.
DOWN SYNDROME AWARENESS MONTH Around the world, October is designated as Down syndrome awareness month23, particularly 22 D. Rights Educ. & Def. Fund et al., The Prenatally and Postnatally Diagnosed Conditions Awareness Act (2008), https://static1.squarespace.com/static/6101ab3e656c8d073d3f0f31/t/611ea14ee612146b6d165e2f/16293973270 47/infosheetbrownbackkennedylegislation_final.pdf.
23 See supra note 20
in the United Kingdom, the United States, and Canada. It is held annually to promote inclusion and acceptance of those with Down syndrome. Numerous initiatives and gatherings are planned to raise awareness of this illness. During Down Syndrome Awareness Month, people with Down syndrome were better understood and accepted. Communities come together to celebrate the skills and accomplishments of people with Down syndrome around this time through a range of activities, such as art displays, educational seminars, and charity walks.
COMPARATIVE
ANALYSIS
BETWEEN UK AND INDIA Not just in India, but all across the world, people are born with Down syndrome. It is a global issue that transcends national boundaries. Having an extra chromosome at birth is known as Down syndrome. Due to variations in the sperm or egg before birth, an individual typically acquires this extra chromosome by chance. None of the parent's actions before or during pregnancy are to blame for this variation. These people typically have learning disabilities, but it doesn't mean they can't have other skills. According to a poll done in the UK in 2022, an estimated 47,000 people in the country had this condition. Supporting people with Down syndrome to live normal, supportive lives and giving them the rights they so richly deserve.
In contrast to India, which has no laws specifically for individuals with Down syndrome, the UK has taken a significant step by implementing the “Down Syndrome Act 2022”24. Following its passage via the Houses of Parliament, the Down Syndrome Act 2022 was granted royal assent on April 28, 2022, and officially went into effect on March 18, 2024. This action is the first of many wonderful chances to raise awareness of the unique needs of individuals with Down syndrome. For these individuals, the act will significantly improve their life results. Making legal provisions for individuals with Down syndrome is the goal of this important step, which amply illustrates that all persons with the condition, as well as their families and caregivers, are entitled to early support to aid in their child's development.
According to the legislation, the Secretary of State must, after consulting with the proper parties, create instructions for the relevant authorities on how to satisfy the needs of individuals with Down syndrome. When providing services including health, social care, education, and housing, the
24 Explanatory Notes, Down Syndrome Act 2022, DEPARTMENT OF HEALTH AND SOCIAL CARE (2022),
https://www. legislation. gov. uk/ukpga/2022/18/pdfs/ukpgaen_20220018_en. pdf. appropriate authorities must consider these standards. “Enable Magazine”25 is another important step. Launched in 2011, it is the most reputable leading disability and lifestyle magazine in the United Kingdom. It is a vital resource for health professionals, caregivers, and disabled individuals seeking knowledge, support, and camaraderie. Every issue is jam-packed with interviews, true tales, and important subjects. By just reading it, Enable Magazine fosters a connection between the disabled community - the largest minority group in the world - and the people and service providers who can help them. HOW MOVIES FEATURING INDIVIDUALS WITH DOWN SYNDROME RAISE AWARENESS AND INFLUENCE LAWS Movies portraying characters that have Down syndrome are important because they promote inclusivity, empathy, and awareness.
By presenting people with Down syndrome as complex persons with their own goals, struggles, and triumphs, these movies dispel prejudices, dismantle social barriers, and promote a more accepting outlook on the world. In addition to being enjoyable, these films are effective social change agents that can affect public opinion and even help shape legislation and regulations that support the inclusion and rights of people with Down syndrome. These movies advance society and raise awareness in the following ways: • Normalize differences and Foster Empathy Example: “Sitaare Zameen Par” (2025), An Indian movie expands on the story by examining how society views adults with intellectual disability. • Humanizing Down Syndrome Instead of characterizing people with Down syndrome only by their condition, movies offer a platform to highlight their lives as relevant and real.
This promotes a greater level of respect and empathy by assisting viewers in seeing them as distinct people with distinct personalities, skills, and feelings. 25 About us | Enable Magazine | the UK’s leading disability magazine, ENABLE MAGAZINE (Aug 28, 2024), https://enablemagazine. co. uk/about-us/ Example: “The Peanut Butter Falcon” (2019) – Actor Zack Gottsagen, who has Down syndrome, plays a young man who is pursuing his dream of being a wrestler in this endearing movie. Instead of concentrating on his disabilities, the movie emphasizes his humanity and tenacity. • Acceptance and Thinking Exmaple: “Downside Up” (2016) – This short film aims to get non-disabled individuals to think about what it’s like to live in a culture where you are the odd one out while also conveying a message of acceptance.
• Challenging Stereotypes and Misconceptions Movies frequently dispel the myths and prejudices about Down syndrome by showcasing individuals who don't conform to social norms. This aids in changing public opinion and promotes a more complex comprehension of the illness, both of which are necessary for the development of inclusive laws and regulations. Example: “My Feral Heart” (2016) – The movie features actor Steven Brandon, who has Down syndrome, in a character that deviates from how disabilities are typically portrayed by highlighting his self-reliance and fortitude. • Educating the Public and Policymakers Movies have the power to inform viewers about the struggles and successes of life with Down syndrome. In order to support legislation that defends the rights of people with disabilities, it is essential to debunk stereotypes and promote an informed, compassionate society.
Example: “Where Hope Grows” (2014) – This movie, which stars actor David DeSanctis, who has Down syndrome, addresses societal biases while showcasing the good effects people with the condition can have on other people’s lives. • Inspiring Empathy and Compassion Movies have the power to arouse audiences’ empathy and compassion by presenting moving tales, which inspires them to perceive the world through the eyes of people with Down syndrome and their families. This emotional bond has the power to transform society and sway legislators to enact more inclusive laws. Example: “The Specials” (2009) – This American reality television series portrays the lives of five friends with intellectual disabilities who live together in the same Brighton home in a very sincere and compassionate way.
• Celebrating Achievements and Advocating for Rights Films may honor the accomplishments of people with Down syndrome, highlighting their social contributions and dispelling the myth that potential is limited by a condition. Laws that support equal opportunities and safeguard the rights of people with disabilities may be influenced by this celebration of ability. Example: “Born This Way” (2015) – Despite being a documentary series, it offers a close-up view of the lives of adults with Down syndrome, highlighting their successes, relationships, and independence. A great way to spread inclusivity, dispel prejudices, and increase awareness is through films that include people with Down syndrome. By narrating genuine and emotional tales, these movies not only inspire and educate viewers, but also promote a more accepting and compassionate society.
They serve as a reminder that each person has a special narrative to tell and a significant contribution to make to the world, regardless of their abilities. They also have a significant impact on legislation and policies that give people with Down syndrome protection and empowerment, guaranteeing that their rights and dignity are respected in all facets of life. Through film, we can keep pushing for a society that values variety and embraces inclusivity.
RECOMMENDATIONS
To empower people with Down syndrome and eradicate discrimination, a multifaceted strategy is needed that tackles intricate social, cultural, and economic issues and calls for a number of actions. The following are some crucial tactics and areas that need to be implemented as required clauses in the legislation specifically designed for people with Down syndrome in order to proceed: First of all, laws that particularly address the rights of people with Down syndrome are needed. One example of such a law is the Down Syndrome Act 2022, which was passed in the UK. Second, every hospital should be required to provide an early diagnosis of Down syndrome prior to the child’s birth. Despite the fact that this is a rather challenging undertaking, parents will have the chance to make an informed choice.
Regardless of age, all pregnant women are advised to have one of two primary tests for Down syndrome screening: • Screening tests: It displays the possibility that a kid conceived in the womb will have Down syndrome. However, these tests do not guarantee any outcome. • Diagnostic tests: Tests like chorionic villus sampling (CVS) and amniocentesis provide a definitive diagnosis of Down syndrome. Thirdly, this diagnosis ought to be provided at a cost that is affordable for all parents. Since high costs might restrict access to egalitarian healthcare, particularly for those from lower socioeconomic backgrounds, parents must have access to inexpensive diagnoses in order to make educated decisions. Fourth, all expectant parents should receive Genetic Counseling (GC). It is necessary for the classification and identification of genetic diseases.
Maternity hospitals should set up counseling centers for this reason. Finding carriers and advising parents about the hazards associated with having a child with Down syndrome are its main goals. This type of counseling is necessary for parents to have appropriate awareness and to help their families deal with events more effectively. Additionally, this will help kids comprehend that people with Down syndrome can lead comparable lives to others. Fifth, under the Medical Termination of Pregnancy (MTP) Act, 197126, pregnant women whose fetus has been identified with Down syndrome should have the right to a safe abortion, so long as the woman’s health is not in danger. However, the MTP Act in India limits the time a pregnancy can be terminated to 20 weeks. According to the statute, an abortion beyond 20 weeks could only be permitted if the mother's or the fetus’s lives were in danger.
However, this clause completely violates women's reproductive choices, which are a component of the right to personal liberty guaranteed by Article 21 of the Indian Constitution. In Justice K. S.
26 Medical Termination of Pregnancy (MTP) Amendment Act, 2021, No. 8 of 2021
Puttaswamy (Retd. ) vs. the Union Of India And Others (2017)27, the court also recognized that, as a feature of article 21 of the Indian Constitution, women are granted complete liberty to make reproductive decisions. A Supreme Court case garnered media attention in 2017 thanks to stories in India Today and the Times of India. In the aforementioned case, a 37-year-old woman who had a 26-week-old fetus with Down syndrome was refused permission to have an abortion. In addition, the Supreme Court has permitted the termination of an advanced pregnancy in some instances where the mother’s health was at risk.
Even though the mother in the aforementioned case was not allowed to terminate the fetus with Down syndrome, a law should be passed granting the mother the right to an abortion if the fetus is diagnosed with mental or physical abnormalities, even if the fetus has developed past the 20-week limit, so long as the mother’s life is not in danger. 28 Sixth, severe sanctions must to be applied for each incorrect diagnostic report that a physician makes, because parents’ right to know the status of their unborn child is immediately impacted. Seventhly, there should be yearly sensitization campaigns because the general public is not well-informed about this medical condition. This will promote acceptance of these individuals.
Eighthly, joint initiatives with the NDSS (National Down Syndrome Society)29 should be carried out in order to raise public awareness and encourage inclusivity among people with Down syndrome and other community members. Ninth, in order to help persons with Down syndrome lead fulfilling lives, inclusive policies should be created. By giving people with Down syndrome equal opportunity, these policies should aim to build a society that respects and values them. The following are some particular areas where inclusive policies may be beneficial to them: • Offering early intervention, inclusive education, and essential support services. 27 Justice K. S. Puttaswamy (Retd. ) vs. the Union Of India And Others Writ Petition (Civil) No. 494 of 2012, (2017) 10 SCC 1 28 Choudhary, A. A.
Supreme Court rejects plea to abort 26-week-old foetus with Down Syndrome, THE TIMES OF INDIA (Feb 28, 2017), https://timesofindia. indiatimes. com/india/supreme-court-rejects-plea-to-abort-foetuswith-down-syndrome/articleshow/57389996. cms
29 See supra note 21
Individuals with Down syndrome have to have access to first-rate medical care, which should include regular examinations, specialized therapies, and mental health support. • Promoting inclusive workplaces, offering job training, and providing support services to enable individuals with Down syndrome land satisfying employment. • Offering reasonably priced and easily accessible housing solutions. • Promoting community engagement and social interaction through inclusive leisure activities and social initiatives.
SUCCESS STORIES OF DEFYING ODDS ACHIEVERS The fact that society does not accept people with Down syndrome is not a new story. They constantly encounter discrimination everywhere in the world. There are still major obstacles in the face of increased awareness and inclusion efforts. However, every obstacle is met with people who rise to the occasion and shatter stereotypes everywhere. Success stories of individuals with Down syndrome include: • Isabella Springmuhl Tejada - Designer She followed in the footsteps of her grandmother, a designer herself. When she enrolled in a fashion course, her childhood fascination in creating outfits for her dolls finally evolved into her ambition as a designer. She began her business creating clothing that was both culturally inspired by Guatemala and specifically tailored for those with Down syndrome.
Her first successful exhibition was Springmuhl in 2015, when her whole dress collection sold out, achieving a significant success milestone. This attracted significant attention on a global scale. Her creations were first displayed during London Fashion Week in 2016, and thereafter at a few more events. Her accomplishments earned her a spot in the BBC’s 100 Women list, which is an annual compilation of the most powerful and inspirational women worldwide. • Karen Gaffney – Athlete She has won gold medals at the Special Olympics and is an amazing swimmer. As the first person with Down syndrome to finish the English Channel relay race, she created history. After that, she also won the Escape from Alcatraz triathlon, Boston Harbor, Lake Champlain, Dun Laoghaire Harbor, and San Francisco Bay. She was the subject of a 2007 documentary called Crossing Tahoe: A Swimmer’s.
• Sujeet Desai – Musician He hails from Buffalo, New York, and plays music. He graduated from Berkshire Hills Music Academy with a degree. He enjoys playing a variety of instruments, including the piano, drums, violin, bass clarinet, saxophone, trumpet, and Bb clarinet. His two amazing documentaries received a lot of media attention and were broadcast on shows like The Oprah Winfrey Show, The Wall Street Journal & New York Times, The View, and 20/20. Among his greatest accomplishments is his 2015 Carnegie Hall performance. In addition to receiving many important prizes, he was honored to play solo at the 2009 Winter Special Olympics opening ceremony. • Madeline Stuart – Supermodel She is a professional supermodel who was born in Australia in 1996.
She began her career by walking the runway at several fashion shows across the world, including New York Fashion Week, London Fashion Week, and Paris Fashion Week. Forbes and Vogue have also featured her. • Judith Scott – Sculptor She is an artist from America. Her remarkable fiber sculptures have earned her recognition. Despite having both Down syndrome and deafness from birth, she overcomes several obstacles in her life. She started her artistic career by enrolling at Oakland, California's Creative Growth Art Center. There, she discovered that fiber art was her genuine vocation. She wrapped found objects in layers of yarn, fabric, and twine to create elaborate and moving sculptures. Her innermost feelings and experiences were reflected in her work, which frequently exuded a sense of depth and mystery.
Her artwork received international attention despite her impairments and was displayed in esteemed museums across the globe, including the San Francisco Museum of Modern Art and the Museum of Modern Art in New York.
Marte Wexelsen Goksøyr – Playwright She is a well-known disability activist, public speaker, and writer. Based on her personal biography, she is the first woman to receive the Norwegian Academy of Literature and Freedom of Expression’s Bjørnson Prize for her rendition of Cinderella. Even scientific research that evaluated the differences between adult and kid perceptions toward impaired actors used her work. • Collette Divitto – Entrepreneur She is an exceptional disability rights activist and entrepreneur. She had a birth defect that frequently prevented her from finding work. She took the initiative to launch her own company, “Collettey’s Cookies,” against social prejudices. It developed into a forum for empowering people with impairments. In order to help persons with impairments reach their full potential, her company provides work opportunities.
In addition, she supports the rights of people with disabilities. She motivates others to overcome obstacles and follow their dreams by sharing her experiences and motivating others. She is a role model for people of all abilities because of her unwavering resolve, indomitable attitude, and optimistic approach. Their experiences serve as powerful reminders of the transformational power of creativity and the boundless potential of the human spirit.
CONCLUSION
It is clear that individuals with Down syndrome may live independent, fulfilling lives as contributing members of society given the correct support. However, there are still some preconceptions about them that undermine their values, obstruct their access to high-quality education, and cause barriers to getting the right medical care, finding fulfilling work, and participating in all aspects of community life. People with Down syndrome still need to be elevated and given better possibilities in many nations, including India. This can only be accomplished by fostering an inclusive atmosphere for them in their families as well as in society at large. One of the best methods to guarantee that people with Down syndrome have their rights upheld and can live fulfilling lives as valued members of society is to create legal provisions, change current laws specifically, or add new protections.
Although Down syndrome is not specifically covered by Indian law, people with the condition and their families frequently find it challenging to obtain the necessary help under the country’s current disability rights laws. To build a more equal society for people with Down syndrome, it is crucial to keep pushing for inclusive laws and policies, increasing awareness, and dispelling myths.
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