When you go through life with a disability that is visible at a glance, you have to learn to deal with how the public sees you. We all, myself included, have the same initial reaction when we catch sight of a person who is disabled, we stare (and if we are under age 5 we point too). This is a natural reaction to seeing something that is out of the ordinary or unexpected. You would react the same way to a man in a gorilla suit, a bear on a unicycle, and a talking horse. You are reacting to the novelty of seeing a disabled individual, not the disability itself, which is why I have no problem with a few brief stares. I don’t even have a problem with young children who point and stare and say, “Mommy, what’s wrong with that man?” because they do not know any better. What bothers me is the way that most parents respond to this question. They look to see if I noticed their child’s question, and while turning bright red, they smack their child’s hand down and tell them not to stare at people. This, if you know anything about kids or people in general, only increases their curiosity and perpetuates ignorance about disabilities. That I have a huge problem with.
It has steadily improved during my lifetime, but there is still a huge amount of ignorance when it comes to the public’s perception of people with disabilities. Although we are no longer hidden away in facilities and institutions (this is still a problem in some cases), and legislation has been passed to try to level the playing field for disabled people (more is needed, but the wheels of justice turn slowly), very little has been done to eliminate the stigma and stereotypes associated with the disabled. Most schools try to educate their students about equality for women, different ethnicities, and other sexualities, but few spend much, if any, time on teaching kids about equality for those that are disabled. Basically, disabled people have moved from behind the cages of institutions, to being out in the world to be misunderstood and stigmatized by the public. Pretty much a lateral move in my book.
I do not want to give the impression that I am on a soapbox here or mad in any way, although that may be appropriate, but I am merely giving my objective take on the reality of the situation (and this is just my opinion, and other disabled people may feel differently). Since the chances of our schools working to help eradicate this problem is miniscule at best, I think that the best way to cure this epidemic of ignorance about the disabled is by educating the public directly so that the next generation of kids who ask, “Mommy, what’s wrong with that man?” will not be reprimanded, but instead given an answer. Like they say, knowledge is power.
In an attempt to help the cause, I am going to give you some ideas about how I wish parents would respond to their kids. First, don’t act as if I can not hear you, if you think I can hear you, then I can hear you. Treat me like any other person. Flash me a quick smile, roll your eyes (as if to say, “kids will be kids”), and gently respond to your child’s inquiry. Also, remember that nothing is wrong with me! Read that again. I may look very different, but I am out living my life the same as you. First help the child see the person not the disability by saying, “Why don’t you say hi?” Or “Can you wave to him?” This will show any disabled person that you see them as a human being and are trying to educate your child to do the same. This will usually at least get a smile from the disabled individual, and most, such as myself, will help you in talking to your little one. Next, give a brief, easily understood answer to their question such as, “His legs don’t work like your’s do, so he gets a special chair. Isn’t it cool?” or “He is sick and really weak, so he uses that chair to get around. Why don’t you say hi and cheer him up?” This helps the child differentiate between the disability and the person, which is really the goal here.
At 27 years old, I rarely let the actions of others affect me any more. It took a long time to get to this point though, and there are still rare occasions where I, or my family, will get irked by a kid peering at me over the back of a restaurant booth or a poorly supervised child following me around the mall. I just try to remember that it is not personal, and they are only acting out of ignorance. Plus, by getting upset I only give up more of my power to this disease, and why would I want to do that? The next time you see a person who is disabled, show them those pearly whites and say hi, because if they don’t let their disease define their life, then you shouldn’t either.