Held Down by Down syndrome?

   My youngest brother, Emmaus Ruiz, was born with Down syndrome (DS) in the fall of 2022. At the time, we did not know what a wonderful blessing had entered our lives. While we would later come to see his diagnosis as only a facet of the amazing person he would come to be, at the time of his birth, the words “Down syndrome” greatly frightened us. 

    This is not an isolated incident. In the years since my brother’s birth, I have heard a similar story many times.(Fucà 2022) I postulate that the fear that all too often makes itself present at the words “Down syndrome” is sourced more strongly in society's own prejudices and dismissals than in the physiological realities of life as a human being with this condition.(Conlon, 2014) More importantly, the negative feelings that are often experienced by parents expecting a child with DS are not a natural result of the genetic condition. They are created by society. 

When a pregnancy is confirmed to be DS, a common practice is for the nurse or doctor to ask if the family wishes to terminate the pregnancy.(Habiba 2019) Needless to say, the question immediately impacts the emotional climate that the expecting parents will associate with the diagnosis. From there, a multitude of reactions from society are also to be expected; many along the lines of how sad, or he won’t be able to work. 

These phrases can deeply impact the family, especially when used by healthcare professionals. Because they speak from a place of power, their sentiments are highly valued.(Macdonald 2026) I remember the tears in my mother's eyes when a speech therapist told us, “Unfortunately, it is unlikely that he will ever be able to sing.” This professional opinion carried weight. Though my brother was only an infant, we felt bombarded with a myriad of things that we were told he would never do. 

 Importantly, it is rarely the case that individuals with DS cannot physically or intellectually meet goals of playing, working, or singing. Most often, the barrier is a societal one. 

A major reason I make this claim is because of what I have seen during my involvement with GLOBAL Inclusive at Regis. I have witnessed individuals with DS practice adaptive yoga, attend integrated classes, work in mutually beneficial internships, and navigate life as active members of a campus community. Last night, I heard them sing at the top of their lungs for karaoke night.

The difference for people in the GLOBAL Inclusive program is the support of a community encouraging them towards their goals. 

The individual is capable. Very capable. Yet the prevailing belief is in chromosome-caused limitations and inferiority, even in healthcare circles. This is meaningful. When people believe something to be real, then it is real in its consequences.(Merton 1995) The massive poverty and unemployment rates for people who have DS are a few such consequences.(DOL 2026)

Healthcare professionals, by way of their position in society, have the power to impact the expectations we have for individuals. As such, the sentiments we express can have a real impact on people's quality of life. As responsible members of the health care world, we must recognize the power our words have to shape lives. 

In the end, there is little that DS actually can keep a person from achieving. All that is required to open many doors is a bit of creativity, some extra support, and most vitally, the commitment of a society willing to say yes. A society willing to find solutions, create opportunities, and encourage individuals and families to pursue growth and reach goals. This is all it takes to allow individuals with DS to take part in living life to the fullest.

References:

Conlon, A. (2014). Down Syndrome: Parents Speak Up. Human Life Review, 40(4), 37. 

“Disability Employment Statistics.” DOL, www.dol.gov/agencies/odep/research-evaluation/statistics. Accessed 4 Oct. 2026.

Fucà, E., Costanzo, F., Ursumando, L., & Vicari, S. (2022). Parenting Stress in Mothers of Children and Adolescents with Down Syndrome. Journal of Clinical Medicine, 11(5), 1188. https://doi.org/10.3390/jcm11051188

Habiba, M. (2019). Controversies in applying the Abortion Act to Down syndrome. Clinical Ethics, 14(2), 57–62. https://doi.org/10.1177/1477750919845085

Macdonald, G., Asgarova, S., Hartford, W., Berger, M., Cristancho, S., & Nimmon, L. (2026). What do you mean, “negotiating?”: Patient, physician, and healthcare professional experiences of navigating hierarchy in networks of interprofessional care. Journal of Interprofessional Care, 40(5), 755–766. https://doi.org/10.1080/13561820.2023.2203722

Merton, R. K. (1995). The Thomas Theorem and The Matthew Effect. Social Forces, 74(2), 379–422. https://doi.org/10.2307/2580486

Perry, S., Woodall, A. L., & Pressman, E. K. (2007). Association of Ultrasound Findings with Decision to Continue Down Syndrome Pregnancies. Community Genetics, 10(4), 227–230. https://doi.org/10.1159/000106561

Sebire, E., Rodrigo, C. H., Bhattacharya, S., Black, M., Wood, R., & Vieira, R. (2024). The implementation and impact of non-invasive prenatal testing (NIPT) for Down’s syndrome into antenatal screening programmes: A systematic review and meta-analysis. PLoS ONE, 19(5), 1–23. https://doi.org/10.1371/journal.pone.0298643