When we started the clinic, families spoke to us about what they needed as well as what they expected and what was most likely to help us connect with families and people with Down syndrome. One of those recommendations was to use “People first” language. For example, the patient we are seeing is a “person with Down syndrome” not the “Down syndrome person.” The attention is to the personhood of the individual first and the fact that he or she has Down syndrome second. It is not just a language issue. It is an approach to the individual: a total process of seeing him or her as a person…as an individual.
I thought of this when I recently read a truly amazing article, “Autism’s First Child” by John Donvan and Caren Zucker in the October 2010 issue of The Atlantic. It describes Donald Gray Triplett, who is described as the first person diagnosed with autism. He is now 77 years old. The article is about a man with autism, not Down syndrome, but it makes points that made me think of our patients with Down syndrome (and those with DS and autism).
There are many striking aspects of Donald and his story. A few that struck me include:
Donald’s personality and life are described so well. As best as I can by reading an article, I feel like I got to know him as a person not just a diagnosis. As a health care provider for adults with Down syndrome, I get to know a great deal about the lives of our patients. I have attended a variety of events with, spent time with, and enjoyed the company of many adults with Down syndrome – both in and out of the office. But I have never lived with an adult with DS. I don’t have a (living) family member with DS. There are clearly day-to-day issues, joys, and tears that I have never experienced. Despite the grief and loss, I love sharing time with families at the wake of a patient of ours who has died, looking at photos during various stages of his life that are displayed at the funeral home, and talking about his life experience. I know I am blessed to know people with Down syndrome as people. Without saying as much, the article calls to the reader to get to know individuals with autism, Down syndrome, or any disability as a person.
Another beautiful depiction in the article is how people in his town accept him into the community. I have previously written about inclusion on our Facebook page. Inclusion for people with DS has its roots in efforts in the education system to improve the education of children with intellectual disabilities (and the experience and education of children without disabilities). It is an ongoing learning opportunity for all of us to extend inclusion beyond school on into adulthood. The article states that “Donald reached his potential thanks, in large part, to the world he occupied…and how it decided to respond to the…child in its midst…the importance of any community’s ‘acceptance’ of those who have autism.”
Acceptance and personhood. Two themes that made this article a worthwhile read for me. I recommend this article to you and I hope you enjoy it as much as I did. I also recommend you share it with others in your community.