The Eradication of Down Syndrome; The Facts And How To Change It
The Manduca Family
Kate Manduca, an Ambassador for Save Down Syndrome, wrote the following article for a class project. When she shared it with me I was compelled to share it with everyone else. With Kate’s permission, I have posted her article below and added a few photos and statistical graphs. - Lindsay Robertson
“In Iceland, every single baby – 100 percent of all those diagnosed with Down syndrome – are aborted”. (Bell, L. 2017, para 2). The statistics are chilling, and the rest of the world is not far behind, “98% in Denmark, 90% in Great Britain and the USA” (Bell, L. 2017, para. 6-7). Advocates and families of children with the gift of Down syndrome are shouting their child’s worth in any forum possible, in hopes of saving a life that is truly worth living. Having a child with a disability can be challenging, but, also one of the most beautiful and rewarding experiences to be encountered. Children with Down syndrome teach patience, unconditional love, how to see abilities, not disability; and that a person’s worth is not measured by their intelligence or societal standing, but, by their determination, capacity to spread kindness and joy and to truly see the good in everyone. The medical community needs to be educated on how to deliver a complete diagnosis that presents the positive side of a life with Down syndrome to expectant families. In a time where inclusion and acceptance of diversity are said to be in the forefront of politics, why are governments pushing society to eradicate people who studies have shown bring happiness and joy to the people who know and love them? How is that inclusion and acceptance? The eradication of Down syndrome is devastating to those who have or love someone with Trisomy 21; this initiative can be compared to genocide, it gives people the impression that their life isn’t valued, and that inclusion and acceptance are moving backwards.
The advances made in medicine over the years are truly amazing, prenatal screening can be a valuable resource, but instead of using these advances to educate families and help them prepare for a child that may have additional needs it’s being used as a tool to eradicate them from society. Governments across the globe are encouraging prenatal screening for all pregnancies and going as far as recommending termination to those families who receive a positive test result for Down syndrome. Schutten (2017) writes, “Human rights law, designed to protect humanity from atrocities such as the deliberate and systematic extermination of a group of people who share distinct physical and genetic traits, is left out of the decision making process”. The system is failing not only people with developmental disabilities, it’s failing the rest of society as well by discouraging diversity. Society will never truly move forward with inclusion and acceptance until these initiatives end. In many countries the process of selective abortion is being labelled as a “reproductive right”. (Schutten, 2017) This “right” is failing not only people with Down syndrome, it’s failing women as well. The after effects of this process are damaging women and Finnish studies show suicide rates are six times higher than in those who have given birth. In an article from the Washington post, (Will, March 14) sums this endemic up perfectly “It speaks volumes about today’s moral confusions that this — the disruption of an unethical complacency — is the real “Down syndrome problem”.”
The situation is so dire in Canada that during Down syndrome awareness week which was held November 1st to 7th the Canadian Down Syndrome Society (CDSS) released their newest and most bold campaign yet, titled “Endangered Syndrome”. This initiative is an outcry to the public to stand behind the Down syndrome community and advocate for awareness and change with regards to termination of pregnancy, Human Rights, and a continued fight for access to services and support funding. The CDSS has enlisted the help of Adam Chamberlain – Specialist in Environmental Law to assist them with the application (CDSS, 2018). The team has applied to have people with Down syndrome added to the endangered list, all criteria for this list has been met, the population is rapidly declining, 233% in a 3 year birth rate, 65% of people with Developmental Disabilities lack proper instruction from education, housing is scarce and extremely difficult to find, 2 out of 3 people with Developmental Disabilities are out of the work force and many are living in poverty (CDSS, 2018). These declining rates in population mean less inclusive classrooms, less access to services and funding to assist those currently living with Down syndrome and it’s critical that they receive support now, to secure a meaningful and enriched life (CDSS, 2018). Education of society on Down syndrome and how people with Developmental Disabilities are “More alike than different” is a key factor in truly moving forward with inclusion and acceptance.
For many families, the way in which the diagnosis is being delivered is distressing uninformed people into termination. Receiving the news that the child you are carrying has Down syndrome is an emotionally turbulent time. The view of many in the medical community is that a life with Down syndrome not only adds a burden to the medical system but to families as well. Practitioners tend to deliver a very one-sided and negative opinion on life with Down syndrome. Heaton (2017) shares “Mark Lawrence Schrad, an assistant professor of political science at Villenova University and a self-described pro-choice liberal, describes what he and his wife faced when waiting to hear if their daughter would be born with Down syndrome. “Hammering home the momentous difficulties that would await us as parents was clearly a tactical move by the doctor to push us toward an abortion” (para 3). When being counselled after a diagnosis many families are only receiving the news from the medical perspective, while there are many secondary medical conditions of concern that come with this diagnosis, families deserve to receive the whole picture. They deserve to know about the side that brings more love and pride than you think your heart can bare. They also deserve to know and understand that this diagnosis truly doesn’t change their lives in a negative way, it actually enhances it. When Heaton (2017) posted on Twitter her response to Iceland, her feed was filled with families posting pictures of “their beautiful and much loved children with Down syndrome. It was a deeply hopeful display of true humanity – the loving spirit of inclusivity that regards all lives as precious” (para. 7.). This one-sided push to terminate Down syndrome pregnancies from the medical community is not only morally wrong it also “counters the purpose of medicine – healing and wholeness” (Mancini, J. 2017. Para 6).
Hope Manduca
We are currently living in an era where people with Down syndrome are no longer taken from their families, put in institutions, and hidden away from society. People with Down syndrome are working as actors, models and spokespeople, they own businesses and not only contribute fiscally to society but can truly spread happiness to those around them. Their often gentle demeanour, joy and ability to bring smiles to stranger’s faces is a gift that our world needs. In a well-known study “Self-Perceptions from people with Down syndrome” Dr. Brian Skotko published that those with Down syndrome “have a very high level of satisfaction in their lives and are generally very happy people” (Mancini, 2017. Para 7). This study additionally details that family members of people with Down syndrome also show high levels of satisfaction from life and tend to divorce less than parents of children in the typically developing population. (Mancini, 2017. Para 7). Mancini explains “so not only are people with Down syndrome happy, but they also bring a great deal of happiness to their friends and family members” (para. 8). So why exactly are people with Down syndrome being targeted for eradication? This initiative tells people with Down syndrome that they are unwanted, unappreciated and not valued members of the communities they live in. Just imagine if you were being targeted for extermination in such a manner, how devastating would that be to your self-esteem, your self-perception and your family. Governments should focus on educating people on diversity, acceptance and inclusion, instead of eradicating them. How boring the world would be if everyone were the same, diversity and inclusion benefits everyone.
In a time where society is supposed to be welcoming of diversity, it appears to be moving backwards to an era where entire groups of people were extinguished simply because someone determined them less than. Education on the beauty and benefits of people with Down syndrome to governments, medical and genetics practitioners and the greater society seems to be one key item that is missing. Advocates and families are taking to social media to share their lives, speaking in schools, protesting in parliament to show the real face of Down syndrome, the side that is love, ability, intelligence and a life worth saving and worth living. Until Down syndrome stops being targeted for eradication we will never truly be able to move forward with acceptance and inclusion. This initiative is damaging, hurtful and wrong and it tells people with Down syndrome that they aren’t valued. What a beautiful world it would be if people would just accept each other for who they are. People are called mankind or human kind so it’s safe to say that the mission here is to be kind. Currently, people with Down syndrome have unprecedented access to early intervention services, they are learning in inclusive classrooms, participating in recreational and community activities, and have the love and support of their families, it is truly unknown, all that they are capable of; but society will soon find out!
References
Bell, L. (2017, March). Babies with Down syndrome deserve love, not eradication. National Right to Life News, 20. Retrieved from http://link.galegroup.com.eztest.ocls.ca/apps/doc/A491909695/GRGM?u=ko_acd_con&sid=GRGM&xid=d38670cb
Canadian Down Syndrome Society, (2018) Letter to IUCN Global Species Programme Red List Unit, Retrieved from: https://www.endangeredsyndrome.com/files/IUCN%20CDSS%20Letter%20FINAL%20Nov%205.pdf
Heaton, P. (2017, December 25) Iceland is not eliminating Down syndrome. America Vol. 217
Issue 14, p 54-54. Retrieved from:
Mancini, J. (2017, August 24) People with Down syndrome are happy. Why are we trying to eliminate them? The Washington Post. Retrieved from http://eds.a.ebscohost.com.eztest.ocls.ca/eds/detail/detail?vid=5&sid=5874c4f8-7c3b-486d-9394-0c1aed988d62%40sdc-v-sessmgr03&bdata=JnNpdGU9ZWRzLWxpdmUmc2NvcGU9c2l0ZQ%3d%3d#AN=edsgcl.501643134&db=edsgao
Schutten, A. (2017, March 31) Children with Down syndrome are being hunted in Canada.
Will we protect them from abortion? LifeSite News. Retrieved from https://www.lifesitenews.com/opinion/genetic-discrimination-in-canada-is-real-and-it-is-lethal