Better left unsaid

When I joined the Executive Committee of Little People of America, I committed to raising positive awareness around people of short stature and the issues that we face. In the past three and a half years, I've rejected more opportunities to raise awareness than I have pursued. Perhaps that's because, in my opinion, we may have raised awareness about dwarfism, but it may not have been positive.

The latest opportunity came a few weeks ago when producer from Spike TV called and emailed. He told me about a reality program that follows a little person wrestler named Puppet. Long ago, he organized a group of wrestlers called The Bloody Midgets. That group often performed in Chicago. A few years ago, Puppet changed the name of the group to the Half Pint Brawlers. I never learned why Puppet changed the name, but considering that Puppet embraces the word "midget," I doubt the reason was to avoid the wrath of people who scorn the m-word. The producer told me that for the reality show, he wanted to stage a debate between a member of Little People of America and Puppet over use of the m-word. Puppet would argue in favor of the word. LPA would argue in favor of identifying the word midget as derogatory.

Last summer, LPA passed a resolution condemning the word midget, and pledging to raise awareness around language in order to help remove the word from common usage. A nationally televised reality show that features a discussion around use of the m-word is definitely an opportunity to reach thousands of people, and perhaps raise some awareness. Nevertheless, LPA turned down the opportunity for a number of reasons. First of all, the debate would have been filmed on the Mancow Morning Show. "We'll have a car pick you up," the producer told me, (how exciting). I haven't heard much about Mancow since he left Q101 in Chicago, but from what I know, he is a radio personality who raves about free speech. The brand he practices does not give voice to marginalized communities. Instead, he uses free speech as a shield to protect himself when accused of delivering hateful, harmful words. I pictured myself on the air, cowering in a chair as Puppet and Mancow reigned verbals blows upon me for suggesting that the word midget offends some people.

But even if the debate took place on what I believe to be more neutral air waves, it's still probably not a good idea. LPA pledged to raise awareness, not to entertain. Reality shows are designed and produced to entertain. With that in mind, no matter how strong the argument I, or anyone else from LPA would make, the final product on Spike TV would have been all about entertainment, not awareness. Who knows. It might have turned out okay. But I cringe to think about how bad it could be.

So for now, LPA has turned down the offer from Spike TV. In the short run, maybe we'll regret it. Maybe they'll dedicate that episode to verbal slurs against people of short stature. But in the long run, I think we're better off.

Double Take

Yesterday, my wife and I visited with a young man who is a person of short stature, his girlfriend and his mother. We all met at the mother's house, in the northern suburbs of Chicago. Katie had met the young man years ago, and hasn't seen him since. We spent a few hours together, eating a little bit and talking a lot. Mostly, the conversation focused on disability issues.

At one point, I mentioned the piece referred to in the last blog entry, Rosemarie Garland-Thomson's Staring: How We Look. Talking about the piece, I said that although Thomson includes people of short stature in her book, the parameters that she develops around why people stare and how they stare don't necessarily apply to people of short stature. Thomson explained that while there are several different types of staring, people who stare normally try to hide their actions. That is, they want to look but they believe staring is rude. So, they try not to let the staree know he or she is being watched. In my experience, people who stare don't always try to hide their actions. Sometimes in fact, the actions of the starer are quite obvious to me and the starer knows this.

After I spoke, Katie made an important point. She said there is a difference between how others look at people with acquired disabilities and people who are born with disabilities. If the disability is acquired, then there is a very human connection between the starer and the staree. The starer looks, and thinks "this could be me." Because of this connection, the starer is sensitive to the impact of his or her gaze, and tries to respect the privacy of the individual he or she is watching. On the other hand, there is no connection with the person who is born with a disability. If a stranger sees a person with dwarfism on the street, the stranger knows that no matter what happens, he or she will never be a dwarf. As a result, the connection between the starer and the staree is less human, which may in turn explain the different types of staring.

Of course, I know plenty of people with acquired disabilities who can share staring anecdotes in which human connection played no part. But I think there is some reality in what Katie said. Whatever the explanations are behind why people stare, the key to eliminating the discomfort that exists as a result of staring has little to do with strategies about how to deal with starers. It has much more to do with raising awareness. The more we can do to raise awareness around human diversity and difference, the better off we all will be, no matter what side of the stare we fall behind.

How do I look?

It's been said a million times before, but human behavior ebbs and flows. We operate on cycles (in reality my cat operates on cycles also). I am no exception. What controls the cycles I follow is human interaction. Until about a month ago, I had for a long time operated freely and confidently out in public, unconcerned about any attention or stares that my short stature may solicit. In fact, I had been riding such a positive cycle that I believed my internal confidence negated the impulse of any stranger to stare or gawk.

The cycle swung down four weeks ago when the passenger of a car with New York license plates snapped my photo while I was on my bicycle. Since then, rather than a load of confidence, I've been carrying a shield, tentatively ready to defend myself against unsolicited negative behavior from strangers.

Soon after the flow moved downward, I came across a book by Rosemarie Garland-Thomson called Staring: How We Look. The book studies why people stare, divides staring into several categories and includes testimony from the starees. I have not read much of the book. In fact, I only printed out a few pages in hopes of finding testimony from people of short stature, and new coping strategies. Indeed, most of the starees about whom the book speaks are people with disabilities. While the best testimony may not come from people of short stature, one little person reported he often "flips them (starers) the bird," the pages are filled with helpful information. From information that helps explain why people stare, "The visual presence of disability robs the encounter of firm cultural guidelines," to words of empowerment, "stares do not necessarily make one a victim; rather, they can make one a master of social interaction."

Based upon my experience, I am far from a master of social interaction, but I am always trying to learn. During the learning process, it's always nice to find new information and experience new things to move the process forward.

Stickers

I heard from a friend who has come up with the idea of creating stickers that say "accessible." She plans to use the stickers on public signs and on public services that use the word handicap. For example, a sign in a parking lot that says handicap parking. The accessible sticker would go over the word handicap. The meaning of the original sign would remain the same and a positive statement about language would be made.

The sticker reminded me of something I'd once planned to do. I wanted to have my own stickers made. I'd carry the stickers with me whenever I rode my bike. If I ever run into cars like the New York plate car mentioned in the previous post, I could grab a sticker and place it on the car's bumper. The problem is coming up with a clear message that, like the "accessible" sticker, sends a positive message and also makes sense to the people who read it. But even if my sticker doesn't carry the perfect message, it'd satisfy me overwhelming need to just do something, anything, when personal space is obstructed the way the car with the New York plate interfered with mine.

As a follow up to the car from New York taking my picture, when the car and the police officer left the scene, I pushed my bike over to the sidewalk. The whole scene took place right in front of a hotel. When it was over, a hotel staffer, he was probably a concierge, asked me, "What happened?" I told him why I tried to get the picture from the people in the car. He asked me a few more questions and listened to my answers before I pushed my bike to the bakery.

Last week, I was back in that part of town, and found myself in front of the same hotel, this time on foot. The hotel staffer I had spoken with a few weeks before was again on duty. "How you doing?" he asked. "I am doing good," I answered. That was the extent of the conversation, but it made me happy. I was glad he took the time to listen to me after the original confrontation. Now, whenever I think about the car from New York, I'll remember something positive.

bike friendly

A few weeks ago, on a Sunday, I was biking south down the lake path, on my way home. It was a great, sunny day, probably around noon. My one commitment for the day was already complete and I was looking forward to an afternoon of football and food. A few miles north of my apartment, I turned off the path. I wanted to pick up some fresh bread at a bakery in River North. I made my way west from the lake path and turned south on State Street, which would lead me to the bakery. About two blocks from the bakery, a gray mid-size car with New York license plates pulled in front of me. A woman sitting in the back seat stuck her arm out the right side passenger window and took my photo with a digital camera.

After 39 years of living with dwarfism, learning from my family and friends, and sharing with other people with dwarfism, I've integrated some okay strategies for dealing with nearly anything that any of us, whether we have disabilities or not, could encounter in the world. I even have a strategy for dealing with drivers and passengers who take my photo ( see March 24, 2008 entry - sorry I can't come up with fresh blog material). But for me, pictures, especially when I am on my bike, strike a more vulnerable cord. I hate the fact that the car can speed away, leaving me no chance to speak with the perpetrators, and I hate the fact that my photo might be used in some degrading fashion without my permission. While I have a strategy for dealing with this particular type of incident, it can only take me so far.

Even on a Sunday, around noon, when traffic is relatively lite, it's impossible to drive more than a few blocks without hitting a red light. My "strategy" calls for me to confront the picture taker if I can catch up to the car on my bike without endangering my life. In the case of the gray car with the New York plates, it hit a red light immediately. I could have caught up on foot.

When the gray car stopped at the light, I was just a few feet behind it. I pulled in front of the car, stepped off my bike, and stood right up against the car's front bumper (what was that about risking your life?). There were three people in the car. A man and two women. The man was driving. Immediately, he picked his hands off the steering wheel, raised them up a little bit said, "What the F... are you doing?" I don't remember if the windows of the car were open or not. It was a pretty nice day. They probably were open. I do know that I could hear him pretty easily. And I didn't have to shout in order to be heard, which was a good thing. My adrenaline was already pretty active. Shouting might have caused a stroke. I told the driver that I wanted the camera. That was the extent of our dialogue. The driver kept telling me to f'ing move and I kept asking for the camera. At one point, the woman in the back seat, who had taken the photo, held the camera up to the car window and told me she had deleted the photo. Perhaps she did, but I kept asking for the camera.

That the car could have run me over and killed me in an instant notwithstanding, I was in a pretty good spot. The New York car couldn't get around me without hitting me, but the other cars, those behind the gray car in traffic, easily moved to the left of the car and continued down State Street. I wasn't blocking any other car. This way, it was only the three people in the gray car who were pissed at me. It's hard to know how much time passed, but we probably sat through at least three green lights, all the while the driver kept telling me to "f'ing move."

After several minutes, the driver stopped telling me to move. He held his cellphone up to the windshield and told me he was calling the police. I was tired of asking for the camera at that point. So, when he threatened to call the police, I just looked at him. Just as the driver was about to make the call, a Northwestern University, not a Chicago, squad car drove up the block from the south. The driver flagged the officer's attention. He stopped his squad car and rolled down the window. "What's going on?" he asked. After the officer heard from both the New York driver and me, he told me to move. "There is nothing wrong with taking a picture," he said. I wanted to cry out, 'yes there is,' but I didn't. I told the officer, what I'd told the people in the car, "I want the camera."

Unfortunately, I couldn't hold my ground as well when the police officer arrived. After he asked me to move two or three times, he unbuckled his safety belt and started to open his car door. At that point, I moved.

At that point, I was shaking so much I had to walk my bike the final few blocks to the bakery.