Today's blog was prompted by a Facebook post I read the other night. It was from a fb friend whose grand daughter has just in the last year or so, developed a condition that has caused her to lose her eyesight. The little girl is fairly young and is now having to use a white cane to get around. This I know has been hard on her and the whole family as they are having to transition into the world of special needs. The grandmothers post brought up something that I don't know that I have ever spoken about on here before....the public's reaction to those with special needs.
Quite frankly....after five months in the NICU with David and not knowing if he would live past those first five months, I rarely worried what anyone else thought of my little guy. However, as he grew older and there was a need for orthotics, a wheelchair and a walker, people were obviously starting to take notice. Add to that...that he was absolutely adorable and very loud due to finding the world outside our house very exciting to him......and yes, there was no way people weren't going to stare. I learned early on though that some stared because he was cute and a little ball of energy and they simply just couldn't help themselves. Some stared because he was very vocal which caused them to smile at him and sometimes even giggle while others it obviously irritated. Not everyone wants to shop at Walmart with a special needs child waving and saying "hi!" all through the entire store. As he got older though and his disabilities became more pronounced with his walker, wheelchair and actions....then people did stop and stare at times. Because I had years to get used to both my childs disabilities and the reactions of others, it rarely phased me. Honestly, most of the time the reason it didn't bother me was two fold. One was that I was usually too busy paying attention to David, what I was doing and whoever else that was with me, that I didn't have time to worry about who was watching or staring at us. Second, it is human nature to stare at that which we view as different. I have done it. Strange hair, strange outfit and yes even someone with special needs, an injury or a defect....I too have stared. It is not out of rudeness....but sometimes you have to take a second or even third look for your brain to process what you see. There have also been times when people stared because David was just down right loud. I would try and quiet him and sometimes like any kid he would quiet down, but if he was excited....then he was letting me know it and where other kids could talk a mile a minute and tell you they are excited....David could only make noise and get louder as his excitement grew. What are you to do? He is an excited kid!
I learned early on that David was going to be a stare magnet. I also learned that most people, including children aren't being mean when they do it. Kids especially are honest creatures whether they are speaking or staring. A kid will tell you that your hair looks funny, your butt is big or the dinner you made is yukky. They are also just as honest when they stare at a kid that looks different than them. If we tell them "not" to stare then we are perpetuating the idea that there really is something different there and that in itself causes kids to feel like there is something wrong and uncomfortable about people who are special needs. I learned this when I started David in the Early Childhood Education program in our school district when he was just three years old. The general education kids were put in the same classroom with the special education kids and they were taught to work together, play together and understand each others differences. This was amazing because the kids learned to love David because they understood that deep down.....he was a kid just as much as they were. That has carried on through the years.
After I understood that kids were honestly more curious about Davids orthotics, his wheelchair or why he didn't talk..... much more than they were trying to be rude or insensitive, I decided to be proactive and use stares as teaching moments. Many has been the time when I see a child or even at times an adult staring at David that I will walk right up to them with David and say, "Hi! This is David. I saw you watching us and I thought you might like to meet him." Then I will go on to explain that David has Cerebral Palsy and that is why he needs his equipment and why he can't talk well. This usually opens up a dialog, especially if I am dealing with a child. They will ask "Why can't he talk?" or "Why can't he walk?" One kid even said, "His wheelchair is cool. Can I ride in it?" That is when you realize that these kids are just curious and in learning mode. To make them feel that they shouldn't stare or ask questions is the same as saying your child has something to be ashamed of because they have a disability and therefor you should politely avert your gaze, ask no questions and most of all.....make everyone in the room uncomfortable. It instantly molds a childs mind and perceptions towards disabilities and the disabled.
For those of us who have dealt with disability from the beginning of life....you get a lot of experience with the art of dealing with it. First and foremost you get rid of your own prejudice and discomfort over disability and believe it or not....we all have them. Yes, even you at first have your moments of embarrassment that your child has a disability and is not like the other kids. That is when you find the stares and the questions intrusive, rude and even sinister. Often though you will find that this is your own prejudice and yes....embarrassment....being projected onto them. Once though you realize that this is just a part of the person you adore and that he or she is much more than their disability, then you quickly replace that embarrassment with pure pride that this is your child and he/she is amazing. That is when these uncomfortable moments easily become teaching moments so that others learn that our differences and disabilities (and again...we all have them) are only a small part of who we really are.
Amy Purdy who lost both of her legs from the knees down. Her life was so full of potential and promise until an illness caused her to lose her legs. Rather than let that define or defeat her though, she made it push her forward and she has become an amazing athlete and just recently a finalist on Dancing With the Stars. And I will tell you a little secret....I stared! I recorded every episode and stared as she danced on those prosthetic legs. In fact I would rewind and stare some more each time she danced. I was fascinated by how beautifully she danced on those interesting "feet". Each time, tears would come to my eyes as I could only imagine how difficult her journey had been and how in all her beauty and glory, she was single handedly putting a new face on disability and yes....special needs. She was using her disability and the worlds ability to stare as a teaching moment.....and she schooled us all!
So yes.....there will be stares, maybe even whispers and moments of awkwardness when you have a special needs child. But then again....you can have those same reactions if you walk out of the bathroom with a piece of toilet paper on your shoe or your dress stuck in your panty hose. I speak from experience. The key is to take those moments with your child and make them count. By introducing David at these times, I am teaching others about disabilities and teaching David that by being proactive about his disability he can break down walls, avoid misconceptions and in the end....those people may still be staring, but with very different eyes.