“Once you label me, you negate me.” Kierkegard
I looked out the large airport window at LaGuardia in New York City. It was early afternoon, but the sky looked ominous. I had just spent an exciting week with my grandparents and other relatives, and was preparing to fly back to Chicago, and then on home to Urbana, IL. Within days holiday break would end and I would return to Madison, Wisconsin to continue my sophomore year of college. Suddenly the wind seemed to pick up. As it increased in intensity, it occurred to me that the plane might be delayed. Instead, an airline representative’s voice boomed loudly over the speaker. “Attention passengers! We are now boarding flight 90 to Chicago. Will those passengers with…” Her voice trailed off as I focused on gathering my bags for the trip. Once on board, I buckled myself and began to flip through my magazine. Other passengers filed in and I noticed an attractive guy walking past me. “Did he just smile at me?” I silently wondered, but quickly focused back to my reading.
As the plane detached from the gate, I peered outside. Snow had begun to fall. Not in the way you might hope—soft with beautiful light and gentle snowflakes. Rather, it was coming down hard, almost sideways at times, with the strong wind as its driver. Once out on the runway, I hoped we could get off the ground quickly, before the storm got any worse. No such luck. “Good afternoon passengers. The Captain has informed me that our aircraft is grounded until further notice. As soon as the weather improves, we are 5th in line for take-off.” As if the entire complement of passengers had been practicing for hours, we gave up a group “ugh!” These were the days of no cell phones, Kindles, iPods, iPads etc. Not only did I have no way to contact my parents or notify anyone else of the delay, I instantly regretted not bringing a long book to read. After sitting in my seat for an hour or so, I suddenly felt a tap on my shoulder. “Hi there.” It was the cute guy I noticed before. “Hi,” I smiled shyly. “My name is Jim. I don’t know about you but that People Magazine looks old. The seat next to me is free. Want to come and sit with me?”
I hesitated for a moment. Had Jim noticed my hands? If so, I was certain he would not have made the same gesture. But I was bored, and a bit intrigued. “Sure, why not?” Before I had even buckled, Jim and I were already chatting away about life. Despite being a stranger, he felt familiar somehow. I soon learned that he was a college senior in Indiana, and was from Connecticut. At first I attempted to hide my hands, but after a while the flight attendant brought everyone drinks. At that point, my attempts at covering up my physical condition became ridiculous. As I thanked the attendant for my drink, Jim did not say a word. He continued talking about his plans for after graduation. When the Captain announced it was time to fasten our seat belts and we would be taking off momentarily, we had been talking together for more than three hours. I was enjoying myself so immensely, I no longer minded the delay, not to mention that Chicago-O’Hare was another 2 ½ hours away.
When it was finally time to land, I felt comfortable enough and decided to address my difference with Jim directly. “By the way, I just wanted you to know, the reasons my hands look like this is because I was born with a birth defect.” I waited for him to respond. He just said to me, warmly, “You weren’t born with a birth defect. From what I can tell, you were born with a birth affect.” As the plane touched down, Jim grabbed my left hand. No one had ever labeled me in such a positive way. I had always been described as disabled or handicapped. Jim and I dated long distance for months after that plane ride.
Recently I shared on the DHIFI Facebook page a television interview of an awesome flaunter named Chad Miller. It was titled, “Disabled Weightlifters Beat The Odds, Lift Spirits”
http://www.waow.com/story/23911338/2013/11/07/someone-you-should-know-weightlifters. Earlier this year, Chad also wrote a fantastic Guest Flaunt essay for my site (http://www.donthideitflauntit.com/who-needs-10-fingers-by-chad-miller/ ). The interview about Chad and another weightlifter, Todd, (who happens to be in a wheelchair) was extremely well-done, and I was thrilled for Chad. However, when I noted the title of the interview and the reference to him as ‘disabled,’ I decided to check in. Was he bothered by the description? Is that how he identifies with himself? Here is how Chad replied (giving me permission to quote him): “Meg, I guess it doesn’t bother me…..Other people may see me as disabled, but I’ve never viewed myself that way. Todd, the other guy who is in the wheelchair, is not someone I would consider disabled either.”
With all of this in mind, I decided to let you all know that I generally don’t like labels, especially ones that suggest that a person is “less-than,” purely based on their physical appearance or different approach to navigating every-day activities. I suppose it was obvious when I started blogging about my disdain for the AMC show “Freakshow” last year based on its title alone. I admit that I have also struggled with the term, “disabled.” Of course, unlike “freak,” disabled is perfectly acceptable according to societal standards, and (purposefully) used in (wonderful and necessary) legislation such as the American Disabilities Act. Even so, I can’t help but balk a bit when it is used to refer to me or our boys, Ethan and Charlie, who share my genetic condition. Living in my shoes, I have always found that when a label such as “disabled” is assigned to someone that looks different like me, the immediate assumption is hardship. But it’s not only the word disabled that I struggle with. ‘Handicapped,’ also comes to mind. For example, last year my appearance on the Today Show was summarized on the show’s website as: “Mom turns Handicap into Teaching Opportunity.” I must admit, I cringed afterwards. Handicapped? It had been years since I had heard that label assigned to me. I couldn’t help but wonder if it is an accurate description. According to the Merriam Webster dictionary, the term, “Handicap” is: a disadvantage that makes achievement unusually difficult. My reaction likely stems from the fact that my difference is all I have ever known. It certainly doesn’t feel like my physical achievements have been all that difficult. It also sort of reminds me of recently when a classmate of Ethan’s (who he didn’t know) asked him, “How do you really do all that with only one finger?” Ethan responded, “The same as you would do anything with eleven years of practice!” Touche’.
In general, I prefer the way kids are more apt to approach me, Ethan or Charlie, since they usually don’t know the word “disabled.” They’ll just blurt out “Why do you look like that?” or “Why do you have only one finger?” As I have written in the past, this is exactly the outburst that causes many parents to want to whisk their child away from people that look different. But sometimes they don’t get the chance, and so then what should one do? To me, that’s our big moment—our chance to give them an explanation and move on. Not surprisingly, our reply to a child would never be, “We look like this because we are disabled.” Yet I have overheard parents reacting to their child’s (loud) outburst as they drag them in the opposite direction from us, quietly explaining to their son or daughter that the reason we are like that is because we are “disabled.” The parent will no doubt look back and smile weakly, apologetically. Their child, meanwhile, will direct his or her attention to the next interesting sight having learned nothing more about us.
By the time we reach our pre- teen years, we have not only learned labels for everything, but understand our assigned category. As a result, I realize there is no point for me to even try to change or control the vernacular on this subject. However, if I am forced to self-label, then from my vantage, my sons and I would be, ‘differently-abled.’ To be clear—when I see someone who is in a wheelchair, deaf, or name-the-difference, like Chad, I don’t think that “disabled” is how they view themselves and I similarly don’t think of them using that word either.
Perhaps my hope lies in the next generation, where we raise our kids to be inquisitive about differences, but resist the urge to label, and where a difference like ours deserves explanation, not just a definition.