“We hold these truths to be self-evident, that all men are created equal. That they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.”
July 4, 1981
The irony of the situation did not escape me. My parents, brothers and I had traveled from Urbana, Illinois to attend my cousin’s picture-perfect wedding, overlooking the hills of La Jolla, California. The view was spectacular and all of my father’s relatives (many who had schlepped from the Manhattan area) were excited to spend the holiday weekend celebrating this joyous occasion. I, on the other hand, had just heard something I didn’t appreciate, and my ego instantly deflated.
The morning had started out splendidly, when I ran into a distant cousin named Randi in the hotel. “Meg, I just love your hair. Come to my room at 9:00 AM and I will brush it out really pretty for you.” Always fiercely independent, I quickly replied. “Oh, I can do that myself….” Randi realized how I had interpreted her offer and carefully came back. “C’mon. I have a special hair-tie I can use. In another life I should’ve been a hairdresser since I love doing anyone’s hair that will let me. Go ask your Mom, and if she says yes, it will be a treat for us both.“ Admittedly, she had boosted my spirits. Moments before I had reviewed in the mirror my simple rainbow-topped sundress paired with the only shoes I could wear –wine-colored boots made to fit my unusual feet – and I was depressed. I felt the weight of my difference looming large, knowing I could never wear the sandals that would perfectly complete the outfit. Whatever Randi would do to make me feel attractive was much appreciated.
After we watched my cousin and his wife exchange vows in front of their pool overlooking the glorious hills of La Jolla, I overheard a conversation between Randi and another wedding guest. Only moments before, I had been chatting with Randi when the other woman walked up. Randi pointed at my head. “Doesn’t Meg’s hair look gorgeous?” I thanked her again for brushing my hair at the hotel. As I walked away to get a drink, I overheard the tail-end of the discussion. “Randi, it was so kind of you to help that handicapped girl brush her hair for this special occasion.” It was the first time I would feel an instant sense of unhappiness – not because I could or couldn’t do something – but from someone calling me a word that I didn’t identify with.
Since I started my weekly posting three years ago, this is the first time that my Friday blog coincides exactly with the 4th of July holiday in the U.S. Every year at this time I am reminded of the Founding Fathers and their declarations of equality and independence.
People have asked me why I do not care for the description, ‘disabled’ assigned to people who are physically imperfect, like myself and our two sons. For quite some time, I just couldn’t put my finger on it (pun intended!)—until now. While getting ready to go to work this morning, I purposefully caught the traffic report where the reporter spoke about a “disabled” car on the NJ Turnpike, causing everyone else delays and hassles. To me, the label simply invites a less than, even negative mentality. I instead prefer the description, ‘differently-abled,’ because in the minds of Ethan, Charlie and me, there is no true trouble—just life approached in a different way.”
The post provoked an unexpectedly large number of responses with comments such as:
–“I hate that word. I hate that people can comfortably refer to my daughter’s little arm and call it a disability. I have yet to see her disability.” (Melanie)
— “Disabled [brings to people’s minds] you CAN’T do something which is a load of baloney.” (Kristy)
— “I don’t believe ‘disabled’ should apply to any person. My daughter has Down Syndrome. She is not broken-down, she just does things in her own time. (Kathy)
–“The only thing that ‘disables’ my kids is the perceptions, assumptions and actions of others.” (Ruth)
But then, someone named Brian ran opposed. “How does being ‘differently-abled’ affect my ability to perform my job? You must account for what WAS and what IS compared to performing the same task. ‘Differently-abled’ provides no accurate and short descriptive name for my issue. As it is, ‘disabled’ seems to be the most accurate.”
As much as I enjoyed seeing that 99% of the people commenting agreed with my negative view of the label, “disabled,” I was mostly interested in the reaction of Brian, the only one who seemed to accept that description of himself. As I digested his pushback, it occurred to me that the folks that agreed with me were born with, or parenting a child born with, a physical difference. Our minds, as a result, don’t default to the fact that we (or our kids) are ever, or should be labeled, as disabled. However, it occurred to me that the discussion would be divided naturally between people who once were able-bodied, and now due to some injury or event in their lives consider themselves disabled, and the other group – those of us born this way who have never known anything different and so don’t feel “less than” anyone else. In that view, no wonder Brian had that reaction to my post! He started life “normal” and now feels “less than” what he was. He feels a loss that I never did.
At the end of the day, although I (and our two sons) may appear physically imperfect to strangers, we not only believe that we are created equal (and feel equal), but also that we have an unalienable right to pursue happiness as well. In our family, where we approach our everyday lives using our own definition of normal, we don’t relate to a label that to us describes a broken-down vehicle stuck on the side of a road.