Down syndrome from a father's perspective.

Words matter with Down syndrome

Within a day or two after Treyton was born I had the opportunity to talk to a family friend that had a son that was about a year and a half old at the time that had Down syndrome. I was in my car at the time and I can actually tell you where I was driving. It is like that for many of the details from those early days. Bill, our friend, was asking me how things were going because he had first-hand experience of what I was going through.

I was doing fine. I was so thankful that we were blessed with this little baby; I didn’t care about the extra chromosome. However, I was acutely aware of the fact that others seemed to think it was a big deal. The question I asked Bill that day was about when he told people that his son had Down syndrome. The issue was that I wanted to brag about my new baby – I was a proud father. However, whenever I told people it felt like I was leaving something out when I didn’t mention that he had Down syndrome. I learned early on that when others learned that your kid had an extra chromosome they acted differently. That still bugs me. Be happy for me! I have a new little baby!

A matter of identity

Have you ever asked yourself the question, “Who am I?” It may not have been that obvious of a question but if you are like most people you like to use a number of things to identify yourself as an individual. For example, I am a dad, a husband, and a Detroit Lions fan. I am also the son of Dan and Jane, a college graduate, and I am left-handed. I, Rob Arnold, am a lot of other things as well. If you were to pick one of the characteristics I listed above to define who I was it would strip away most of the things that make me a unique person and reduce me down to one thing.Treyton's left hand print

Let’s say that the fact that I am left-handed was something that stuck out to you. As a left-handed person I do notice others that face the same challenge. We are fairly easy to identify in restaurants, any place we are required to sign our names, as well as doing things like playing sports or hunting. What do you think of when you see one of us? What are we like? Are we all basically the same?

Sure, science can show you that there are characteristics that are common among left-handed people. Did you know that left-handed people are more likely to be geniuses than right-handed people? What about the fact that on average, left-handed men that graduate from college are 26% richer than right-handed male graduates? Unfortunately left-handers are more likely to become alcoholics and have an average lifespan that is 9-years shorter than right-handers.

The point here is that even though I am left-handed and have graduated college there are a lot of other factors that contribute to my financial situation. The way my parents raised me is certainly a factor. Did they teach me the value of money? What about the type of work ethic they instilled in me? I did choose to go to college and then continued on to get a master’s degree. What about my career choice? If I chose to be a left-handed pastor I certainly would not be as rich as a right-handed business person. Demographic characteristics like left hand dominance can be helpful for things like marketing but they must be recognized for what they are. They are narrow and incomplete and are not helpful in most situations.

Treyton is my son

Since Treyton was born, there have been a number of occasions when well-meaning individuals have felt the need to let me know when they saw someone who had Down syndrome. More times than not they conveyed this piece of information using one of two options: 1) “I saw a Down’s boy at the store today.” 2) “There was one of them at the store.”

Is that what people think my son is? Is he one of them? Is he a Down’s kid? Yes, Treyton has Down syndrome but just like I am more than a left-handed person he is more than that damn diagnosis. When I hear people saying things like “Down’s kid” or “one of them” or “those kids” or “there was a Down syndrome soccer player” I cringe. I know that the people using these terms have good intentions but what I hear is that you think my son is just like every other person with Down syndrome. He’s not.

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Treyton has more in common with his parents and siblings than he does any other person with Down syndrome. He looks like an Arnold and he acts like an Arnold. Just the other night we were hanging out as a family watching a little T.V. Leigh Ann left her place on the couch to go do something during a commercial. As soon as Trey saw his mom leave the room he jumped up, grabbed the blanket Leigh Ann was using and threw it downstairs. After quickly shutting the basement door he took his mom’s place on the couch and waited for her reaction. That’s my boy!

What people need to understand is that we see Treyton as our son. He is not our son with Down syndrome, he is simply our son. We do have some special considerations that we must keep in mind with him but isn’t that the same with all kids? Trey has three older sisters and each one of them is different from the other. Each and every child has special considerations.

Language is important

The difference between the right word and the almost right word is the difference between lightning and a lightning bug.
- Mark Twain

Have you ever wondered why we call it pork and not dead pig or roast beef instead of roast dead cow? Words matter. Language is an important part of culture and the particular words chosen can carry with them a lot more than just their simple definition. Language reflects the beliefs of our society. It is a powerful force that is able to maintain negative beliefs as well as isolate people with differences.

“Unfortunately, disability diagnoses are often used to define a person’s value and potential and low expectations and a dismal future may be the predicted norm” (www.DisabilityIsNatural.com). People who live with disabilities face social challenges daily and being held back by outdated stereotypes is like kicking a person when they are already down. Using language that focuses on the disability strips people of their humanity, it reduces them to one characteristic.

Put people first

Now you have a choice to make. You can choose to knowingly or unknowingly use language that represses people like Treyton by focusing on a disability or you can choose join with Treyton’s Posse and use language that helps to destroy the false, negative stereotypes holding them back. If you choose the second option you will be choosing to use what is called People First Language (PFL).

PFL puts the person before the disability. It is language that describes what a person has and not who the person is. Wikipedia says that PFL is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities. The is what the ARC has to say about PFL,

“By placing the person first, the disability is no longer the primary, defining characteristic of an individual, but one of several aspects of the whole person. People-First Language is an objective way of acknowledging, communicating, and reporting on disabilities. It eliminates generalizations and stereotypes, by focusing on the person rather than the disability.

Learning to use language that emphasizes that people with Down syndrome are people and not a diagnosis is not difficult. The first step is to understand that there is not such thing as a “down’s kid.” That is something that simply does not exist. There are kids with Down syndrome but “Down syndrome kids” are a myth. Down syndrome is something that a person can have. It is a disability that can challenge people in many ways. Those individuals with the extra copy of the twenty-first chromosome can continue to learn and develop throughout their entire lives.

The next step is to simply rearrange your words a little. Say things like, “I saw a kid at the store that had Down syndrome” instead of, “There was a Down’s kid at the store.” Don’t assume that all people with Down syndrome are alike and say things like, “Down’s kids are so sweet.” Seriously? You need to get out more if that is what you think. The personalities of people with Down syndrome are as varied as those of us without it. Why would it be any different?

It is a big deal

I am not sure you understand the significance of this subject but trust me when I say it is a big deal. Because Treyton is only 3 1/2 years old he is not aware of how people perceive individuals with Down syndrome – but I am. I am very aware of the stereotypes that people have and the ignorance that plagues the average mind and it won’t be long before Treyton catches on as well. Please spread the word.

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.