I might be making several generations of special needs parents angry by saying this, but it’s true. I don’t mind when young children point and stare at my child with special needs. In fact, I like it! I’m such a rebel, I know. ‘Don’t point’ and ‘don’t stare’ are pretty basic social recommendations for people of all ages. But let me explain my deviant way of thinking by sharing two examples from the happiest place on earth…you guessed it. Disneyland!
Example one. I was waiting with Chloe for the rest of our party to get off a ride that Chloe wasn’t able to go on. We were sitting on a bench and a very cute family was sitting next to us. The mom was passing out snacks and planning their next stop when one of her sons, probably 4 or 5 years old, kept looking at Chloe and/or her wheelchair. His mom noticed and told him it was not nice to stare. Then slowly but surely, he wiggled his way closer and, pointing at Chloe’s pink wheelchair, asked me, “Why is she sitting in that?” I smiled a big grin, excited to talk about how we all have differences and planned to encourage him to chat with Chloe because, well, she loves making friends! Before I got a single word out, his mom went in to panic mode. I’m sure she was thinking, ‘Oh no. He was staring, now he’s pointing and asking questions. He is breaking social protocol. What an embarrassment!’ She grabbed him and angrily told him how it is not nice to point, stare, and annoy strangers. He burst into tears and buried his head into her, peeking just one eye out to look at us, his almost-friends, and the mom gathered up her family and hastily walked away. She gave me a very nice smile and said, “I am SO sorry.” Again, before I could begin to utter that it was okay, she and her family were gone. I could see her talking to all of her children very sternly as they scurried away, I’m assuming to let them know that, ‘we don’t point, stare, or ask questions about people who are different than us.’
Example two. Chloe and I were sitting on a bench next to a cute family. (Bare with me, it starts the same, but it truly is a different story!) Chloe was having some pain and sensory overload (Sensory overload at Disneyland?! No! Haha!) and was crying and fussing in her wheelchair. I was stroking her hair, talking to her, and letting her know I would get her some medicine and that we would be leaving soon. I noticed that one of the little girls, about 6 years old, was watching us intently and looking over Chloe and her wheelchair with some came over to us and asked why Chloe was sad. I explained that her legs were hurting and she was tired and suggested it might help if she talked to her. I can barely think about this without tears welling up in my eyes because what she did next was one of the most tender things I have ever experienced. She grabbed Chloe’s hand and said, “I’m sorry you’re sad. Do you want my sticker? It made me happy, maybe it would make you happy. My sister has one too, you could have hers too!” Her parents were smiling as they were also watching the interaction and had to be proud and touched at their sweet daughter’s gesture. She started peeling off her Mickey sticker and insisted we let Chloe wear it to see if it would make her happy. Chloe did stop crying for a moment while she made a new friend, but quickly went back to crying. So I started giving her Tylenol through her g-tube. This, I’m sure, is something the little girl had never seen before and she was watching my every move. “Why does she get medicine like that and not through her mouth?” Her dad seized the teaching opportunity and reminded her that, like they had talked about, everyone is different and one of the ways her new friend is different is that she gets food and medicine straight into her stomach. “Oh,” she said. As simple as that. Oh. They had clearly talked about differences and that made sense to her. They left before us, but they all said goodbye to both Chloe and I and Chloe smiled at her friends as they ran off to ride Small World.
There is such a difference between the examples. Both children were curious. Both parents seemed to be kind and trying the best to instill good manners in their children. But what a different outcome!
So now let me break it down, why I don’t mind and even like when small children point and stare at Chloe.
- It leads to knowledge. A small child pointing and staring is an indicator of curiosity and amazement. I want them to be curious and amazed by Chloe, by her equipment, by the things that make her different because that can lead to conversations that help them understand differences. I blog to share our story with others. I participate in cerebral palsy awareness each March, disability awareness in October, epilepsy awareness each November, and my life sometimes seems to be one big special needs awareness campaign, and I embrace that because spreading knowledge about these things is important to me. So why would I shy away from spreading knowledge to children in real life settings? Don’t get me wrong, when these situations present themselves, I don’t intend on getting on a soapbox and going into great detail about Chloe’s conditions and everything that goes with them. I will do my best to share knowledge about these things that are age appropriate for the person involved. A 4-year-old might want to know why she doesn’t walk and the appropriate answer would be because everyone is different and that is what makes her different. To an older child, I might expand a little more, depending on their attention level (wink wink).
- It leads to comfort with and acceptance of differences. When children are allowed to have questions and the adults around them are comfortable talking about things, this naturally develops in them comfort being around people who might be different than them. Being scolded for being curious will do the opposite, instilling in children a fear and general discomfort being around other children who are different than them. That is not what I want! These are Chloe’s peers. I want them to see HER and accept her as she is.
- It leads to inclusion. If I ever did decide to get high up on a soapbox, it would be to preach to the world about inclusion! Our big, vast world is filled with diversity. An inclusive community does more than accommodate diverse people; it celebrates them; it refuses to let anyone feel like an outsider. Each individual benefits from an inclusive environment. For us, Chloe would be included in activities. Her limitations would be worked around, making it possible for her to occasionally forget she has limitations. The other children seeing Chloe and those like her being included will develop increased compassion, deeper thinking, and patience. Everyone wins! Ahem, oops, let me get down off this soapbox and get back to the real topic. Children who point and stare can be taught about differences, then feel comfortable with differences, then include diverse people in their interactions. That is what I want. I will not hinder that because someone coined the term that it was rude to point and stare.
There are likely many special needs parents out there who will wildly disagree with me and stand firm that staring and pointing is rude and unacceptable. That’s okay. We all have our different opinions and I embrace that. I know some children can be mean spirited about it and trust me, I would not accept that. But overall, I think the world is filled with good, well-intentioned people, children and adults alike. I will continue to be open to whatever interactions we have. If some parents want to rush their children away from us for fear of possibly offending us, then they can, but I hope they don’t. I hope the pointing and staring leads to something, whether with us or later on in the car or at the dinner table. I hope Chloe never feels isolated and I will never, ever stop advocating for her and those like her in any way I can. So point and stare, little humans. Point and stare away. Let’s see where it takes us.
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