Written by: Caitlin Saliba
Edited by: Holly Paik
While the fight against stigma in the realm of mental disorders is one that is still ongoing, it is unquestionable that certain conditions have received more attention than others in the effort. Down syndrome (DS) is arguably one of the most misunderstood conditions in this field, making it imperative for psychologists and researchers to be advocates for this population, rather than complicit in the perpetuation of the current narrative. Recent destigmatization campaigns such as Assume That I Can, so Maybe I Will by the National Down Syndrome Society (NDSS; 2024) spotlight the shortcomings in the understanding of the syndrome, both in the context of societal views as well as healthcare and insurance-related policies. In order to best serve the Down syndrome community and work to continuously improve their quality of treatment and life overall, it’s important to have a thorough understanding of the real nature of how the syndrome is treated, as well as the contradictory experiences of those who are born with it.
Down syndrome is a genetic condition in which a child is born with an additional copy of their 21st chromosome, an important type of protein that contains the genes of the person it belongs to. Medically known as Trisomy 21, this additional chromosome influences the way in which the baby develops both physically and cognitively, which could lead to some challenges for the individual (CDC, 2023). However, despite the fact that there may be developmental or learning delays for individuals with Down syndrome, DS certainly does not prevent these people from acquiring these skills entirely. While there are varying support needs for each case of DS, there are no shortage of cases where individuals are able to work multiple jobs, live independently, and even become business owners or entrepreneurs themselves. If this is the case, how is it possible for the current level of stigma to be prevalent?
There is an unfortunate attitude of negativity that surrounds Down syndrome, whether it be directed at mothers expecting children with the disorder, or towards individuals from the community overall. This attitude stems from a place of harsh stigma and blatant misunderstanding of the syndrome, and should be the primary focus in the effort to holistically improve perception of DS. Horrifyingly, much of the stigma comes from doctors and professionals themselves, with some mothers of children with DS reporting excessive offers from doctors– bordering on pressure– for termination during their pregnancy. What’s more, many mothers, such as then-45 year old Lorraine Buckmaster, also report getting harsh pushback from medical personnel when she wasn’t willing to risk a miscarriage for the sake of further DS testing (Jones, 2020). This attitude from doctors, presuming that expecting mothers would want to terminate a pregnancy simply because their child may be born with Down Syndrome, is unfathomably damaging to both perception of the syndrome on a wider scale as well as extremely stressful to mothers and their families. As a non-fatal condition, there is no conceivable reason as to why there is as much pressure from medical staff to terminate DS pregnancies as there is currently.
Like any given mental condition, Down syndrome can occur in a few different forms, and to different levels of severity. However, many individuals unfamiliar with the condition beyond its greater reputation are under the impression that each case of DS is so severe, that the individuals who have it are entirely dependent on their parents or caregivers for their lifetimes. However, not only is this far from the truth, but the DS community themselves have spoken out against this view. The NDSS frequently shares personal experiences and stories from DS patients, including those who have become models, business owners, entrepreneurs, and more (NDSS, n.d.). These stories showcase the fact that Down syndrome, while a learning disability, is certainly not a “life disability,” and that individuals with DS are entirely capable of being hardworking, inspirational, and important members of society– despite what decades of stigma say. With millions of “success stories” (which the author takes to be a loaded label), it becomes almost confusing as to how the narrative of DS got so skewed from the reality of the condition.
Despite the amount of stigma that still surrounds DS, there have been a few hopeful steps forward that show improvement in the understanding of the syndrome. Early this year in 2024, Californian Congressman David G. Valadao announced legislation meant to repeal the marriage penalty for people collecting supplemental security income (Valadao, 2024). While this includes a number of communities, an important note is the inclusion of DS patients. As it currently stands, individuals with Down syndrome stand to lose their health and insurance benefits if they get married. The issues with this policy is clear, and further infantilize people with DS by sending the message they can’t, and/or shouldn’t, get married. This hurts their ability for independence, something also commonly misunderstood as something unattainable by this population.
Overall, there is a vast amount of social, medical, and legislative prejudice that surrounds Down syndrome. The psychological community, so dedicated to the destigmatization effort, should focus more heavily on Down syndrome, as well as other conditions that are vastly misunderstood or misrepresented in literature in the media (e.g., autism). Our mission is imperative to the improvement of the quality of care and life overall for people with DS. Social Media Campaigns such as Assume That I Can, so Maybe I Will are an admirable step forward in the advocacy of improved perception of Down syndrome. By allowing people with Down syndrome to speak up for themselves in regards to the stigma they’re facing, it will become increasingly clear that many approaches to DS in a societal or medical context are misguided. Moving forward, one could only hope that such campaigns and perceptions on DS become more mainstream, as self-advocacy from people with Down syndrome can only increasingly show their long-standing ability to do the things society has decided that they can’t.
References:
Canadian Down Syndrome. (2024, March 14). Assume that I can | Global World Down Syndrome Day Campaign 2024 [Video]. YouTube. https://www.youtube.com/watch?v=92ivgabfdPQ
Facts about Down Syndrome | CDC. (2023, October 10). Centers for Disease Control and Prevention. https://www.cdc.gov/ncbddd/birthdefects/downsyndrome.html
Jones, B. C. (2020, October 24). Down’s syndrome: “In all honesty we were offered 15 terminations.” Bbc. https://www.bbc.com/news/uk-england-beds-bucks-herts-51658631
Press releases | U.S. Congressman David Valadao. (2024, January 23). U.S. Congressman David G. Valadao. https://valadao.house.gov/news/documentsingle.aspx?DocumentID=1026
Success stories. (n.d.). National Down Syndrome Society (NDSS). https://ndss.org/success-stories
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