That's Nice of You!!

That’s nice of you.

Today in Philadelphia, hundreds of people are gathering for the city’s first ever Disability Pride Parade. With this in mind, I am going to share something I have been thinking of for a couple of weeks.

Recently, there was a photo circulating around Facebook. It's a snapshot of a young couple ready for prom. The she's an attractive young woman, as is the young man, decked out in their finest formal wear. So why is this picture circulating around Facebook, asking for shares and likes? Because the young man has Down's Syndrome, and apparently, the fact the fact that this young lady, who is very cute and probably popular, would go to prom with a guy who has Downs is an anomaly.

The caption:

She took a boy with down-syndrome to the prom with her. How many "likes and shares" for this beautiful picture?

Thousands of armchair activists and PC loving people hit the “Like” button, celebrating this “inclusion.” However, few of them gave a second thought to why they “liked” it and what it really says…

My senior year, I was in love with a guy we’ll call Highspeed. Highspeed did not return my affections and asked another girl to prom. It happens. It happens to a majority of teenage girls. But in my head, the reason he didn’t “like me like that” was because I had arthritis.

So with Highspeed out of the running, I asked a boy named Matt. Now Matt was a boy I had loved my junior year (oh our fickle teenage hearts). I asked him to go “as friends.” Matt had a girlfriend at another school, but her sister went to our school and her sister “told her about me.” Apparently feeling no impending threat of Matt making out with me at prom, she said that he could go “as friends.” At the time, it didn’t really bother me because in all reality, Matt was a placeholder. Even though he was a helluva lot more fun and better looking than Highspeed, I was more concerned with why Highspeed wouldn’t take me to prom than why Matt could.

Until I heard about Ken. I’ve known Kenny since kindergarten. He lived on my block. He knew me before I “got sick.” He knew me when I ran around, climbing trees, riding bikes and chasing boys around the playground. He also watched as I began to walk funny, transfer schools and eventually began using an electric wheelchair. When he saw me in the neighborhood, he still said “Hi” which somehow made me feel like I was still “normal.”

Fast forward to a few weeks before prom, Ken (he stopped being Kenny sometime after Freshman year) and Matt stood on the cement steps outside of the school’s main entrance, smoking their cigarettes and waiting to be let back into the building because they had skipped a class. Being a neighborhood school, everyone knew each other so Matt and Ken were friendly. Making conversation, Ken says to Matt, “I hear you’re going to prom with Deserae.”

“Yeah, just got my Tux,” Matt said proudly, he was a sophomore going to senior prom.

“Well, that’s nice of you,” Ken replied.

That’s nice of you. I have never forgotten that. Luckily, I was too wrapped up in the high school drama of Highspeed and his date (and the fact that she wasn’t me) to worry about Ken’s comment. Plus, what Ken didn’t realize was that Matt knew that he was my stand in and we really were “just friends.”

Prom night, Matt showed up at my door, looking extremely HOT in his black tux and teal cumber bun, wearing Oakley shades and smelling of Drakkar and I must say, I was looking pretty sassy with my fancy up-do, little black velvet dress and platform heels. The hall looked beautiful, with silver stars and royal blue napkins. "A Night to Remember" hung on a banner over the DJ. Matt was fun and as the night went on, even tried to hold my hand, bump and grind and, eventually, kiss me.

Guess I was more of a threat to the girlfriend than she or Kenny thought.

However, due to my habit of wallowing in my own heartache, I spent most of the night watching Highspeed rather than returning Matt’s advances. And somewhere, in the back of my mind, a little voice kept reminding me that Matt was just “being nice” and I didn’t need him to do me any favors. 

I have never forgotten Kenny's simple, off-handed comment. And unfortunately, even now, when dating, I sometimes hear that voice in the back of my head, “That’s nice of you.” I wonder how many people still think that, when they see me out with a man, when they see anyone out with a disability dating someone without. I battle that voice. I tell myself that it doesn’t matter what other people think. Until something like the Facebook prom photo gets 12,000 Likes and counting and I am reminded that regardless of how far I’ve come in accepting and even embracing my disability, the rest of the world still has a long way to go. 

A New Year

It’s 2012. Wow. Where did the time go? It’s been quite some time since I posted. The number one rule of successful blogging is, “Do it regularly”. Well, actually, it’s “Write Well.” Then make sure you do it regularly. Because I worry so much about the first rule of writing well, I fail to follow the second rule. That being said, it’s a new year and like most people, I have set some goals for myself, live more mindfully, lose weight and write more often. The question is, what to write?

I have been living by the Serenity Prayer a lot lately.  God grant me the serenity to accept the things I cannot change; 
courage to change the things I can, and wisdom to know the difference.

I have always been very self-conscious of my hands. I can’t even remember when they began to change, but when I was diagnosed with JRA at 8, they were straight. By the time I was 12, my wrists had drifted (ulnar deviation, they call it) and were fixed sideways at a 90-degree angle. I know this from pictures. I don’t remember it happening. But I remember the boys in eighth grade, sitting at the end of the lunch table, mocking my hands and me as I raised the fork to my mouth. I stopped eating lunch for a few weeks. I wasn’t allowed to change tables.

By high school, the fingers had joined in on the fun, with the tendons growing weaker, the joints began to slip, and my hands began to look gnarled and old. Again, I know this from pictures more than I remember it happening—which is not to say I didn’t know they looked different. I just didn’t notice how significant the progression was.

The problem is, unlike scars, unlike pain, you can’t hide your hands. Especially if you are an animated talker, as I am. I’ve tried, especially on first dates or in job interviews. In fact, in my 20s, I began to make plans to “have them fixed” one day. And, like so many other people, I lived with the “If/Then” fantasy. If my hands were fixed, I would be more attractive, people wouldn’t stare, I wouldn’t be so self-conscious. It’s funny how we tie our hopes to that far off “If/Then,” hanging in limbo; waiting for the “Then” to come.

Well, to quote John Lennon, “Life is what happens when you’re busy making other plans.” So while I planned on having the hands “fixed” one day, I went on with life. Until a month ago. Due to circulation issues, I was sent to my hand surgeon. As we discussed treatments for the latest addition to my laundry list of “secondary conditions,” I asked about my fingers.

“So, since you are already going to be in there,” I asked (“in there” being opening up my hand to work on some arteries), “could you just replace or reset my index finger since I haven’t been able to straighten it since the tendon disintegrated back in ’99.”

At that point he informed me that he would never electively work on my fingers. “We would be asking for a world of trouble,” he said. Apparently, my inability to heal (thank you, steroids) and my compromised circulation would make an attempt at replacement/realignment a VERY bad idea.

Suddenly, my “If/Then” fantasy was shattered. There would never be a day that I would have long, straight, piano player fingers, hands that would make me more attractive, hands that didn’t evoke curios stares and make me self-conscious. Yet, I go on with life, again often forgetting my hands and their unusual shape.

And that’s okay. Even when someone reminds me, as they sometimes do. This week I went to the clinic for a treatment and the infusion nurse was one whom I have known for at least a decade. We were talking about how long it’s been since I’ve been on a biologic (a story for another day), at least seven years now. And she casually remarked, “Well yes, I can see a lot more deformity in your hands.” “Really?” I thought. For just a moment I was taken back, wounded by the comment, unaware that my hands looked any different than they had a few years ago. It’s a little like gaining weight. You don’t realize it happens until one day you catch a view in a store window and wonder whose big ass is wearing your jeans.

It was almost a split-second decision, but it was a conscious one. There was my Ego, feeling wounded, wanting to jump in and dwell on how ugly and deformed my hands were becoming. Then, there was something deeper that just said, “Huh, Okay. They’ve gotten worse. They still work (for the most part) and there’s nothing you can do to change them. This is you.” It was a very surreal moment and I chuckled to myself, thinking about all the turmoil I had just avoided by choosing how I took her innocent comment.

I realized, at that moment, that I have accepted that I cannot change the physical appearance of my hands, but I can change the way I think about them…and have found the wisdom to know the difference.  

At least for today…