“I had taken my daughter Penny to the Metropolitan Museum of Art in New York City. After a morning of Penny marveling at the masterpieces, we stopped for lunch in the cafeteria. Penny has a rare neurological disorder called Aicardi Syndrome. She uses a wheelchair, has a g-tube, has intellectual disabilities, and an inability to speak. When kids see her, they tend to notice her. Reactions can vary widely.
As a family walked by us, a young girl turned toward Penny. A moment later, the mom came over and asked if her daughter could introduce herself to Penny. ‘Sure! Penny loves meeting new people!’ I answered. The girl introduced herself and asked if Penny could talk. I told her that Penny couldn’t, but loves being spoken to. The girl asked Penny what she saw in the museum, and I told her Penny loved the colorful windows in Medieval Art. ‘The windows are my favorite! Well, Penny, I have to go. Have a nice day!’
That moment was the highlight of my month. Penny can’t initiate her own social interactions, and rarely has the pleasure of other children approaching her with genuine interest and joy. I don’t know if the girl was taught the kind of empathy and curiosity that she demonstrated, or if she’s just miraculously like that, but the world needs more people like her.
If you know a child with disabilities, there’s a good chance that child has been ignored, mocked, and/or avoided by a lot of children, and even adults. Penny may not understand the fine details of many social interactions, but she knows when a friend arrives. You can see it on her face with her wide smile and her gleeful vocalizations.
The Americans with Disabilities Act (ADA) facilitates access to buildings, education, and fair legal treatment. But many children with disabilities lack access to loved ones, support networks, and a sense of belonging. We’ve been blessed to have a core group of friends and family who’ve decided that Penny will always be a part of their lives. But if you took this social access away, Penny would be devastated, just as she would be without the ADA.
Penny needs people who see her as a loved one, but she doesn’t need those who see her as a project, a prop, or a character reference. Here are a few truths I’ve learned about being a friend to Penny:
#1 If you have an end-date in mind (community service hours, etc.), you’re in it for you, not for Penny. Occasionally, parents tell me that their child has to do a community service project and would like to visit Penny. My response is: If your child is interested in learning about and developing a relationship with Penny, ok. If your child is going to put in the necessary hours and then cut out, my daughter does not exist to help your kids reach their extracurricular requirements.
#2 If you’ll stop coming if you can’t post about it on social media, you’re not in it for Penny. You’d like to visit Penny? Great! But please ask me or my wife before posting photos. I’ve experienced too many instances of people taking selfies with Penny and posting them all over social media. Penny is not your ‘Disabled Best Friend,’ and she’s not a chapter in your Facebook Story. And she is certainly not a way to demonstrate to your friends and family how wonderful you are for developing a relationship with this girl in a wheelchair.
#3 If you can’t think of one reason why you’re looking forward to your time with Penny, you’re not there for her. Recently, a child at a nearby school did a project on disability rights and cited her friendship with Penny, using Penny’s name. Aside from the fact that we were not consulted before our daughter was used for this, Penny has virtually no relationship with this girl. Please don’t exploit a non-existent relationship with a disabled child for a school project. It should go without saying it’s a pretty horrible thing to do.
#4 If, however, you keep thinking about her, your child keeps asking about her, and all you think about while driving to see her is that laugh she makes when Peppa Pig is on, then Penny is waiting for you.
My daughter would love to be your friend, but please don’t make her a prop.”
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This story was submitted to Love What Matters by Josh Fyman, and originally appeared on Little Lobbyists. Are you the parent or guardian of a child with complex medical needs and disabilities? Share your story here, and be sure to subscribe to our free email newsletter for our best stories.
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