I’m not sure if everyone else is like this, but I often reflect and replay events in my mind. This is not a productive use of time and it’s probably not very healthy, but it’s one of the things I do… In this case, I’ve been thinking and re-thinking my few minutes of time with Senator Grassley in Guthrie Center last spring. While I certainly don’t agree with many of his policies or a lot of his overarching philosophy, I think Chuck Grassley is a good, intelligent, and competent lawmaker. But, he said something in our conversation that has niggled at me ever since.
As I was finishing my Medicaid question to Senator Grassley, I took out my phone and showed him a picture of Koan. I needed him to see the face of the child his decisions would be impacting. He took the phone from my hand, looked for a second at Koan’s picture, smiled and said, “What’s wrong with him?”
That question bothered me right away. In the moment, I choose to stick to the facts and said, “We don’t know.” I then moved the conversation to the difficulties of these types of uncertainties for families and did my best to tie this to the policy process surrounding Medicaid. I think that was the right thing to do, but in retrospect, it’s not the response I would have liked to have given.
For days after this, I found this question was making me angry. It implies that Koan is somehow broken. I’m sure this sounds strange, but I think of him as perfect — in the same way my other two children are also perfect. Perfect is not the right word because with all of my kids there are things I wish and hope they will continue to improve upon. But, I would never describe Sydney or Tiber as having something “wrong” with them. Koan is different, but that’s not “wrong.”
I’m sure to many people this may seem like trivial political correctness. I understand that argument. I certainly don’t believe that Senator Grassley intended anything other than genuine concern with his question. But, I also can’t deny my own feelings, too. Recently, another parent of a disabled person said to me, “I would not wish that (having a child with a disability) on anyone else. But, I would not trade this experience with anyone or for anything.” I find that to be true for me as well. So, Senator Grassley, to answer your question again — there’s absolutely nothing “wrong” with Koan.