Cruelty (July 1995) “Did you see her arms? She’s a freak!” I was walking down the Upper East Side, hoping I would run into no one for a different reason. I had just come back from a morning at the gym. My face was still flushed and even blotchy, hair up in a ponytail-twisted mess, shirt damp, and old glasses slipping cockeyed off my sweaty face. Admittedly (and ironically) vain about my appearance, I only wanted be out in public when I looked perfectly presentable which had absolutely nothing to do with my physical difference and everything to do with my hope to meet cute guys. However, I lived on 86th and 2nd Avenue and the NY Sports Club was on Lexington, forcing me every morning to dash from the gym a considerable distance back to my apartment praying I wouldn’t meet anyone along the way. In retrospect, that day it didn’t matter if I was showered or not, dressed to the nines or still in sweatpants. That comment still would have been hurled in my direction, fast and furious. It was as loud as it was harsh, and immediately drew attention in my direction from several passersby on the street.
The guy seemed around my age and was practically saying it to make his friend laugh (at me). Even after seeing my pained reaction, he clearly had no remorse. He didn’t know me, I didn’t know him, and somehow that seemed to give him the liberty to speak his mind and be downright cruel.
Sympathy (July 2002)
“Oh! I am so sorry. Did you and your husband realize it was genetic?” She practically patted me on the back as she stared at our infant son. I was on maternity leave and had been strollingEthan around Larchmont, NY, our hometown at the time. Although I had ventured out early to avoid the worst of the heat, it was still a particularly hot and muggy day. Ethan was dressed in a cute blue onesie, revealing his own version of our shared genetic condition. The comment came from a neighbor, who was both an elementary school teacher and a mother of two young children of her own. As I began to prepare a response, I couldn’t help but feel a combination of anxiety and heartache. What was it about other people who felt the need to express themselves in a way that, while well-intended, still felt crushing.
Empathy (July 2013)
“Meg, I think I now sort of get what you having to deal with all the time.” My friend Mike had just had a minor procedure on his nose and had to wear a bandage prominently featured on it for weeks. The experience of having people staring at him, pretending they didn’t notice or sometimes blurting out a question about his temporary disfigurement yielded such interesting reactions that he even decided (okay, at my prompting) to write a Guest Flaunt about it. Although he was hardly walking around with two fingers like me, his experience resonated regardless. “If you want to get a taste of what it’s like to have a visible difference, try walking around with a big bandage on your nose for a few weeks. Given the variety of things to see in New York City, it amazes me that people will stare at a bandaged nose. But stare they do! I’m a pretty self-confident guy, but I confess that those stares are disconcerting. At times, I felt like a bit of a freak and wanted to shout out “Stop staring at me!” Although perhaps he didn’t appreciate it fully, I was deeply moved by my friend’s newfound ability to relate to me on this other level.
The recent Bruce Jenner interview with Diane Sawyer was, for me, a pretty raw and significant event. Jenner declared that “for all intents and purposes” he believed himself to be a woman. Though some might not see a reason to celebrate such a revelation, Jenner’s willingness to finally stop hiding what makes him unique was courageous and paved the way for countless people of all ages to accept themselves unconditionally. By most accounts, the public agreed that Jenner’s actions were praiseworthy. Yet barely two weeks after the interview, I’ve noted on social media and from anonymous callers on radio that people are readily using Jenner as the butt of cruel and insensitive jokes. While I doubt any of those jokers would have the courage to mock Jenner to his face, the impulse to use the Net to launch anonymous assaults on others seems everpresent.
The following day coincidentally I came across a piece titled, “When the Cyber Bully is You.” The article posed a current and appropriate question. “Why are people so mean on the Internet?” I felt like I didn’t even need to read the full article. From my experience the answer was obvious. They are expressing themselves from the privacy of their own homes. They can indulge in their worst anti-social impulses with no consequences (for themselves). But of course I read the article and, among other things, the piece did provoke me to think a lot about cruelty.
Fortunately, I can count on Ethan’s, Charlie’s and my own fingers combined (and okay, that still only totals eight) how many times any of us have been the object of actual cruelty, whether in person or cloaked by the internet. However, I was reminded of another related article, “To the People Who Say ‘I’m Sorry’ When They See My Child,” by Virginia Speer in The Mighty, that people who are different or parenting a child with a blatant difference actually suffer much more frequently from acts of sympathy than cruelty. Speer is the mom of a differently-abled young daughter and wrote about the difficulty of managing the reactions of strangers. “When we go out in public seven out of ten will address us with something like, “Oh she is so cute,” “How adorable,” or “She’s doing so well and looks great.” These people are polite and tend to show a genuine concern. Two out of 10 people are the rude and disrespectful ones. Their comments go more like, “What is it?” “What’s wrong with it?” or even “Why did you have it?” These are the ones we can completely do without. We’ve learned to just say, “God bless” and walk away. The last type of person is the “I’m sorry” person — the one who walks up to ask how old our baby is and then immediately says, “Oh, I’m so sorry.” This is the comment that actually still hurts. These people feel sorry for us; they pity us. My daughter is a kid. No child is perfect. Every baby and child has flaws — colic, purple crying, not wanting to sleep, mood swings, not wanting to eat, wanting to eat too much, acting out, having social delays, etc. So why should my daughter be looked at differently than anyone else’s child just because she is unique? I know people will always look at her differently because of her arms and size, but why look at her with pity and sadness?
Not surprisingly, Speer’s portrayal of what it’s like to be a mother of a differently abled child was raw and honest. And I get it….if you allow them to penetrate, sometimes all the questions and intentionally harmless pity is simply too much to endure. But what caught my attention the most was how Speer ended her piece: “How would you feel if someone walked up to you in public, put their hand on you shoulder and said “Oh, I’m so sorry.” You’d be left feeling lost and wondering, “Why? Was it something I said? Is it something I’m wearing? Did someone tell them something about me?” That’s how we feel when this happens. You assume something about my daughter before you even know her name.”
To me, whether they speak to us directly or make negative comments hiding behind a pseudonym, I expect there will be cruel people in our lives, who’d prefer mocking someone than taking the time to understand. Just ask Bruce Jenner. Still others may have pure intentions, but feel compelled to offer their most sincerest sympathies. Just ask Virginia Speer. I too would love to force them all to try and turn the tables and put themselves in our shoes. I have in the past, like Speer, even suggested it. Quite frankly, it was useless.
But thankfully, there is yet another segment of the population that is supportive when encountering someone who is different. They actually don’t need to put themselves in our shoes. Although it is not always obvious why, through their own life experience somehow they have the ability to understand. During Jenner’s interview, he mentioned that his step-daughter Kim was having a tough time about his news. To my surprise, Bruce described that her husband, Kanye helped Kim to better understand how Bruce must feel and that he deserved their unconditional love and support. He told her, “I can have the most beautiful wife. And I do. I can have the most beautiful child. And I do. But if I can’t be myself I have nothing.” In reality, I cannot control how people behave. And although I will always need to endure the unwanted reactions of others and guide our children to manage the same, I am grateful that so many others apply their own life experience when meeting me or our children. They intuitively treat us exactly the way they’d like to be treated, with understanding and empathy.