Honoring People with Down Syndrome

Pictured: Woman with down syndrome and her friend

by  Kathleen M. Bishop, Ph.D. 

At the age of thirteen, I met a five-year-old boy with Down syndrome. I was volunteering as a member of the Future Teachers of America and assisted a kindergarten class during my study hall time. I immediately fell in love with the little boy, Johnny, and spent most of my time with him. After two weeks of volunteering in that class, I was called to the principal’s office—rarely a good thing. When I got there, the teacher at my small rural school’s only Special Education Class stood up to greet me. The kindergarten teacher told her about my interest in working with her very young students and invited me to volunteer for the Special Education class “since I seemed to have a skill and enjoyed working with Johnny.” 

In those days, the Special Education Class was down a long, dark separate hallway. The teacher, who became my lifelong friend, mentor, and colleague, didn't get a break during the day as lunches were in the classroom, not the shared cafeteria. And her students weren’t allowed to attend music, gym, or art classes. This segregation didn’t change in some schools until the 1980s. In others, things are still the same today. I spent the rest of my high school study halls in the special education class, learning so much from my mentor and friend. This began my lifelong work in the field of intellectual and developmental disabilities. The labels and diagnosis have changed, but the attitudes that led to a classroom of children being segregated as if they were contagious remain the same.

Pictured: Book Cover - In the Shadow of Fame: A Memoir by the Daughter of Erik H. Erikson

Since the early 1960s much has been learned about people with Down syndrome. The options for quality of life within their family and community have increased greatly from the days when institutionalization was most often recommended by physicians to the parents of a newborn child with Down syndrome. In her book, In the Shadow of Fame, Sue Erikson Bloland, daughter of well-known psychiatrist Erik Erikson writes about her shock learning that her brother with Down syndrome lived after birth rather than dying as she and the world were told.  

Following the advice of his pediatrician friends—all of whom were influenced by the societal attitudes regarding people with disabilities—Erikson had put his youngest child in an institution, where he died in his mid-twenties. He was to tell the world and his other children that the son died at birth. Bloland writes about how her parents’ relationship changed after her brother was born. She and her other siblings took fewer vacations and trips to international conferences with their parents. Her mother took vacations alone instead of taking trips with the family. Bloland writes of hoping that her mother knew he lived and visited her son.

In the 1990s, while preparing my Ph.D. dissertation, I conducted research on caregivers of adults with IDD. I interviewed parents, most of whom had a son or daughter with Down syndrome. These were the parents who kept their children home, against the advice and pressure to institutionalize as best for everyone. Their decision to keep their children at home came with the new challenge of seeking emergency or hospital care when needed. 

I kept hearing the same comment in my open-ended qualitative interviews:

“We were told by doctors, health care providers, and hospital staff to let our child die as best for everyone.” They told me how hard it was then to find a doctor who would treat their child. Sometimes they drove hundreds of miles to other cities to find health care providers who might not be knowledgeable in treating a child with Down syndrome, but were willing to learn and try.”

Fortunately, the average life expectancy for adults with Down syndrome has increased from nine years in the early 1900s to around sixty today. However, early research indicates adults with Down syndrome have a 100% risk for Alzheimer’s disease. Many advocates, caregivers, and health care providers don’t know of the current longitudinal studies indicating approximately 56% of adults with Down syndrome studied display symptoms of loss attributable to Alzheimer’s disease or a related dementia (ADRD) by the age of 60—significantly less than the original cross-sectional study that concluded 100%. 

Today, older adults with Down syndrome experience the health disparities families of children with Down syndrome used to experience. And in some cases, it’s a flashback to the disparities and discrimination they faced in their own childhood. The health care challenges today are related to the automatic assumptions of many health care providers based on outdated research that any losses or changes observed in an adult with Down syndrome must be associated with ADRD. In my personal experience, many times there isn’t an appropriate and complete differential diagnosis conducted to rule in or out possible causes for the decline or a diagnosis given other than “dementia” which doesn’t fully indicate the possible cause for the decline.

“Frequently, over my years of work on dementia capable care for adults with IDD, I’d receive calls, texts, or emails from families seeking out services for their adult children with Down syndrome. Many relate to me that they’ve had to stay with their willing pediatrician rather than move to a provider of health care for adults.” 

One mother told me, “When I try to find a doctor for my son, they tell me they don’t know how to work with an adult with Down syndrome. Please help me find a provider who is willing to work with my son.” I’ve head this frustration expressed over and over, like the stories I heard in interviews in the 1990s. I believe that the now older generation has inherited the beliefs of the past that resulted in the institutionalizing of children with Down syndrome. It’s about a lack of respect for the value of children who look and learn differently who are now adults with similar challenges, but having unappreciated value for each of us if we listen and learn.

It’s a sad irony that the concept of independence and each generation establishing their own nuclear families adopted by most of society—including the field of IDD—largely comes from Erik Erikson’s theories. This concept is harmful to many, including older people who may need more assistance in later years, and people with developmental disabilities who need lifelong support. The real irony is that no one ever lives entirely independently. Instead, the goal for most should be to strive for autonomy through interdependence with each other, helping improve the lives of all together, and  recognizing that difference is a gift, not an inconvenience.

Young Johnny stimulated my lifetime career and passion for trying to understand how to make life better for children and adults with IDD, especially with Down syndrome. He’s now in his sixties, and I wish I could see him again to thank him for teaching me the importance of caring about a child needing extra support to learn and the gifts he gave each day. I can still see his smile and his enthusiasm when I helped him play with objects meant for him to learn skills and increase attention span. There are so many other little boys/girls and grown adults with Down syndrome who’ve made a huge, but unrecognized positive difference in the lives of others. A Buddhist term I’ve learned is “Precious Treasures”, those people who on the surface appear challenging but have so much to teach us.

After defending my dissertation in the 1990s, I was asked to wait in the hallway under a portrait of Dr. Burton Blatt, the major initiator of deinstitutionalization and school mainstreaming. As I waited forty minutes to learn if I’d sufficiently earned my Ph.D., I studied the quote underneath the portrait which read “The one thing that is certain what we do today, we will regret tomorrow.” As I believe nothing is chance, I was meant to sit there to spend the rest of my career sharing this sentiment to others so we critically question how do we change what is wrong today.

Pictured: Young adult with down syndrome

In this time of celebrating people with Down syndrome and their families, please take the time to seek out those Precious Treasures and thank each for making a difference in your life.

References and further information:

In the Shadow of Fame (2005) by Sue Erikson Bloland

Bishop, K.M., Hogan, M., Janicki, M.P., Keller, S.M., Lucchino, R., Mughal, D.T., Perkins, E.A., Singh, B.K., Service, K., Wolfson, S., and the Health Planning Work Group of the National Task Group on Intellectual Disabilities and Dementia Practices. (2014). Guidelines for Dementia-Related Health Advocacy for Adults with Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices. Retrieved from www.the-ntg.org.

Moran, J. A., Rafii, M. S., Keller, S. M., Singh, B. K., & Janicki, M. P. (2013, August). The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. In Mayo Clinic Proceedings (Vol. 88, No. 8, pp. 831-840). Elsevier.

National Down Syndrome Society. (2019). Alzheimer’s Disease & Down Syndrome A Practical Guidebook for Caregivers. Washington, DC: NDSS. https://ndss.org/sites/default/files/2022-06/NDSS_Guidebook_FINAL%5B1%5D.pdf?token=mFxgGWTmxCfXUGgH9Pcv98mQV9f1o1Vz2CBqgk4KKY

About the author:

Kathleen M. Bishop has a BS from SUNY at Geneseo, a MS and Ph.D.in Gerontology with a focus on aging and IDD. She has worked in the field in numerous IDD organizations for 60+ years and is currently (as a failure in retirement)  working as a  private consultant and serves as  VP for the National Task Group on ID and Dementia Practices as well as chair of the NTG Education & Training Committee. In this capacity, Dr. Bishop has trained thousands in dementia capable care. She’s published two  novels under the pen name  Mary Kathleen McKenna related to her passion in restoring ancient women’s history. She’s working on three other novels, one of which is titled Manatee Cove that will focus on an adult with Down syndrome.