Down syndrome from a father's perspective.

A Lesson From Star Wars

I was able to take my youngest daughter, Lindyn, to see Star Wars in 3D yesterday. As I was watching the movie I couldn’t believe that it contained a “People First” lesson in it. When Padme first meets young Anakin she is surprised to learn that he is not a free person. Padme exclaims, “You’re a slave?” and Anakin replies, “I am a person and my name is Anakin.” There you go, another reason to like Star Wars!

IS HE A DOWNS BABY?

az-swingIt seems that whenever I get together with other parents that have children with Down syndrome it does not take long for the stories begin to surface about how their child was reduced to a diagnosis. I am not talking about people making intentionally harsh comments, in fact, most of the time it is quite the opposite. I am talking about comments like, “Oh, DOWNS KIDS are so sweet.” “THOSE KIDS are a lot of fun.” Or something like, “Your son has Down syndrome, THEY can still have a good life.” One of my favorites comes from when my wife took Treyton to the dermatologist for some rough patches of skin. There an older male doctor was called in to give a second opinion and then stated, “Oh, yes, you get that a lot with these kids.” My wife did not appreciate this at all but she is much nicer than I am. I would have gladly shot back something like, “Well I expected that type of comment from you people, you know, old people.”

I don’t believe that many of the people making these comments understand the impact they have on individuals with Down syndrome as well as those of us that love them. But, it still hurts. I want people to see Treyton for the person that he is.

MARKET SEGMENTATION

As a person with an M.B.A. in Strategic Management I am well aware of the benefits of market segmentation. Breaking customers into demographic groups can provide a lot of insights for marketers.az-gap However, these groups are very simplistic and only focused on a limited number of similar traits. If we were to continually refer to individuals by these group titles the individuals would lose all of their unique qualities. That is what is happening when people talk about “Downs kids” and “those kids.” Individuals with Down syndrome are being segmented; grouped based on a few similar traits. This may make sense in a conference room when we are talking about developing a product specifically designed for people with Down syndrome but when we are talking about specific people we need to lose the generalizations.

A SECOND CHANCE

Please do not assume that because I am writing this that I have always been sensitive to PEOPLE FIRST LANGUAGE, that is not the case. Before Treyton was born I did not put a lot of thought into people with disabilities and I know that my language would have reflected that. Because of that I try to be patient with others when their language focuses on the disability and not the person. However, I don’t stop there; I try to gently point out how their language reduces people like Treyton to something that is much less than¬†what he is. I believe that Treyton is perfect the way he is (trust me, I don’t mean that in some hokey B.S. type of way). I want the same thing for him as I want for all of my children; I want them to lead a happy and fulfilling life; to be able to create their own future. I am committed to making sure that the only person that will determine if Treyton can or cannot do something in life is Treyton himself. I do not want anyone telling Treyton that because he has a certain diagnosis that he cannot do something. I am sure that over time there may be things that other kids can do that Treyton is not able to do. At that point, I will be there to let him know that it is O.K. if he cannot do something. His value, just like my other three kids, is intrinsic. A child’s value cannot be earned it is granted by their creator.

REMEMBER

Please remember to use “People First” language. By that I mean, my son is NOT a “downs child.” He is Treyton Scott Arnold. He loves spaghetti, dogs, playing with balls, and can read over one-hundred and fifty¬†words. Yes, he does have Down syndrome but he is much more than that.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.