Wil was sitting on the ground, unwilling.
“What does he have?” She asked.
“What do you mean?” I responded but I already knew.
“What does he have? What is wrong?” She prodded.
“He heard a loud noise so he’s scared. He just needs some time. He’ll be fine.” I knew that was not what she was after.
“Oh.” Slight pause. “Well what does he have?” She asked again.
“Do you mean does he have Down syndrome?”
It seems most anyone I meet knows someone with Down syndrome. Almost instantly they launch into a story about their daughter, son, niece, nephew, aunt, uncle or friend and how they have enriched their lives. Then we invariably laugh about the seemingly innate stubbornness our friends with Down syndrome share and find ourselves carrying on with big smiles on our faces with all kinds of stories. Nine times out of ten strangers become friends with our Down syndrome bond. But this was already shaping up to be a very different kind of conversation. My inner red flag was waving it’s head off.
“Oh, do you know there are supplements for that?” Ahhh, that’s what this is about.
I’ve been approached with supplements before, that will “cure” Wil’s Down syndrome. In fact, some of his facial features with Down syndrome will even start to “normalize” after taking such supplements, is the claim. That one really gets my blood boiling. My son is beautiful, there is nothing “abnormal” that needs to be “normalized”, and there is nothing that needs to be cured, either, thank you very little.
“Do you mean to cure him?” How dare she. She doesn’t even know my son, not to mention the fact that my son was sitting scared on the ground and I was trying to calm him and coax him up. But her agenda was not about helping him, it was about curing him. She launched into how to cure my child of his “disease.” If she really wanted to help, she could have lent a hand for goodness sakes.
“There is nothing to cure.” I said. “Down syndrome is a genetic difference. He has three copies of his 21st chromosome. He’s very healthy.”
“Oh, but you should watch this video. World renowned doctors. They cure people who are in wheelchairs that can not even lift their heads. After they take the supplements they are able to move their heads.”
“Wil moves his head just fine. Really.” Did she even hear anything I said?
“But these are expert doctors. You must watch the videos.”
Wil has a genetic condition, not a disease. Let’s get that difference very clear. If I had a piece of chalk and a black board in front of me at the time I would have had her write 1000 times “Down syndrome is not a disease.” And if she didn’t get it after that, write it 1000 more times.
I am not on the same path as this woman, I don’t know her history or where she was coming from. I know I have made many blunders myself in the things I say and do simply because I do not know better at the time. But there is a difference between ignorance and not knowing. Ignorance does not want to know. Not knowing is simply a lack of exposure. She clearly was meeting the former definition. The sad part is, our society has become so politically correct, there are people that truly care and make blunders simply because they don’t have exposure to kids with special needs. When Wil was a baby, friends confessed to me that they really wanted to ask questions but were too scared to because they might say the “wrong” thing. Whenever I meet people, I remind myself that I was once new at this whole special needs thing. There was so much vocabulary I did not know and I’m sure I said lots of things that grated the nerves without even realizing it. A few years ago, a new friend of mine let the word “retard” (pains me even to type it) slip and immediately caught herself. She apologized over and again. When she said it, I clearly saw on her face how bad it tasted once it left her lips. A word she likely once through around without a second thought before she met me. I never once had a discussion about that word with her previous to this. But when she it came out, I could see she now understood the pain that word brings. I wasn’t mad, I was glad she said it in front of me. I was glad that she now knew for herself, now with exposure to a child with special needs, how wrong that word really is. She didn’t know before, and now she did. There will always be situations where we just don’t know until we have a personal experience and can learn for ourselves.
I’m not sure the conversation with the woman I had today got through. When I left her, I felt like I was in my space and she was in hers. Our two worlds never connected. She clearly knew very little if anything about Down syndrome and was not interested in learning more, even though she was trying to “help” me by curing my son. When I have these types of encounters it’s almost like a shock. How in this day and age can Down syndrome actually be considered a disease? It just blows my mind. Let’s take yourself for a second. You are generally healthy but you may want to improve some things about yourself; eat healthier, learn a new language, increase you muscle tone, take guitar lessons, help to relieve world hunger. You don’t need a cure to improve yourself. You just need motivation and people to help you along the way. Now, if you developed Lyme disease, then you’d be looking for cures. Life improvements and disease are two very different things. Wil does have extra challenges because of his genetic differences, such as cognitive delays and low muscle tone, but they are not diseases. We work on ways to improve his muscle tone like horseback riding, staying active, eating healthy. We work on his cognitive delays with added reading, dot math, and spelling. There are health ailments that are associated with Down syndrome such as a higher incident of heart issues, leukemia and Alzheimers. Of course, we need to focus strongly on cures for those health ailments. But let’s be very clear these are health ailments associated with Down syndrome. They are NOT Down syndrome.
While there will always be people like those I encountered today, that are like talking to a brick wall, there will always be people that truly care. It’s an incredibly special part of life when I go somewhere with my Buddy Walk shirt on and a complete stranger will approach me and share a story about a loved one with Down syndrome. And there will always be people that simply say the “wrong” words because they just didn’t have exposure to this experience but are open and wanting to learn more. I was angry with this woman I encountered today and she did say so many “wrong” things. But I won’t let that stop me from giving people a chance to say the “wrong” things that truly care. The best education is not a lecture (though I would surely have delighted in seeing this woman write Down syndrome is not a disease 1000 times) but to realize, with time and exposure with Wil, and other friends and family with Ds, that this is in no way shape or form a disease. Down syndrome is a genetic difference. Our friends with Down syndrome add much value to our lives being exactly who they are, just as you and I add to life by being exactly who we are. If you don’t believe me, go ask someone in a Buddy Walk shirt. They will be more than happy to share their stories and I promise you two won’t be strangers for long. Why the heck would you want to “normalize” or “cure” something as uniquely beautiful and special as that?
WILingness 