Disability 101: The Paparazzi Effect
August 2, 2009
What do celebrities and people with visible disabilities have in common? The paparazzi effect! Let me explain.If Angelina Jolie were to walk into a local business, what’s the first thing that would happen? People would openly stare at her with a look of shock and disbelief. You know, the jaw drops, the mouth hangs open, the eyes get big.What’s the first thing that happens when I, in my wheelchair, roll into the same business? People stare at me with a look of shock and disbelief. Their jaws drop, their mouths hang open, their eyes get big. What happens next as Angelina strolls through? Once people start to recover from their shock, they rush over to see what they can do for her. Someone holds the door for her. Someone provides her with a chair. Someone offers her a beverage. There’s a great flurry of activity while her every need is tended.What happens next when I roll in? Once people realize they better stop staring at me, they rush over to help me. Someone holds the door for me. Someone clears a path for me. Someone offers to reach high items for me. There’s a great flurry of activity to help me.Isn’t that something! Bet you didn’t realize that Angelina Jolie and I have so much in common!What next for Angelina? People will want to take her picture. The cameras are going to come out. Cell phone cameras surreptitiously start clicking.Okay, this one is a bit different for me, but it does happen. No one takes my picture just because I rolled in the door. However, if I do anything slightly interesting, the cameras start clicking as well. For example, when I handcycle or monoski, everyone wants to take my picture.I don’t mind, if it serves a purpose. Maybe one of the organizations I’m involved with is going to use the photo for a brochure. That’s fine. But very often, there’s no purpose at all. Someone decides that handcycling or monoskiing is just so cool that photos must be taken. Cameras start clicking. Every step of the way. Throughout the entire ride or ski run or whatever. And then it happens on the next ride or run.Now I’m worried I’m going to hurt the feelings of some of my friends. I know you guys mean well and you just think what I’m doing is cool, but it does get a little weird after awhile when my picture is taken so frequently. After all, I’m not Angelina Jolie! But I love you guys!Anyway, getting all this attention kind of freaks me out. I can’t just casually go on a bike ride or go shopping. Sometimes so many people are following me around trying to help me that it feels like the paparazzi are following me. I long for anonymity in the same way that I imagine Angelina longs for anonymity. This paparazzi effect freaks out people with hidden disabilities even more. People who have heart disease, liver or kidney disease, AIDS, lupus, fibromyalgia, or multiple sclerosis with no outwardly visible symptoms may be more in need of help than I, even though I am using a wheelchair. People with hidden disabilities may be struggling with overwhelming fatigue, pain, dizziness or vertigo. They may be having a really hard time managing their shopping trip.But does anyone rush up to help them? No. Then they see me getting all the help and they are frustrated, thinking “What about me? I need help!” Note to reader: get past the wheelchair. Think outside of the box.