Trust and privacy

As a person of short stature who is part of a community that, within popular culture, has been the punchline of jokes simply because of our physical difference, I am leery of cameras. Perhaps because they buy into the stereotypical message of dwarfs as comic relief, strangers sometimes take my picture. I do not know what the strangers do with my photos, but I am guessing they do not hang them next the Van Gogh and Renoir posters in their room. I imagine the anxiety I feel around cameras is shared by other dwarfs. With that in mind, when our pictures are taken, especially if they are intended to be shared with a wide audience, we like to know exactly for what the photo will be used and we want some sort of say over how the photo is staged.

About five years ago, a few stories broke about Preimplantation Genetic Diagnosis, a procedure that allows one to screen out which fertilized eggs will be implanted into a woman's uterus. The stories reported that some clinics that perform the procedure would refuse to follow the wishes of dwarfs who might choose to use the procedure to purposely give birth to a dwarf baby. In the wake of the story, media outlets scrambled to find a dwarf couple who had either undergone the procedure or who planned to use the procedure to have a dwarf baby. As far as I know, no couple fitting that profile was found by the U.S. media, but the Associated Press did write a story about a dwarf couple in New Jersey. The couple had tried to have a baby for a long time. They did conceive once, but sadly the baby was born with double-dominance. When a child carries the dominant gene from the father and the mother, the baby rarely lives for very long. After trying for so long to have a child, I believe the couple was considering pursuing procedures that would enable the couple to deliver a healthy dwarf baby. The Associated Press found the couple, who agreed to tell their story.

Again, I can only assume, but I imagine the couple spent a long time debating whether or not to do a story. The wife has experience in public relations and media work, and so must know that, if one is the subject of a story, no matter how carefully you craft a message, no matter how cautious you are with information, the intentions of the subject are subordinate to the vision of the reporter and the media outlet. The couple must have known this, but agreed to the story because of the reputation of the outlet and because they believed the issue and the message to be important. Similarly, they probably dedicated a lot of thought to whether or not they would agree to a photo for the story. In the end, in order to share their story and agree to a photo, the couple must have trusted the reporter and the outlet, and must have trusted the story and the photo would be used for a purpose in which they believed.

A few days ago, news emerged that the couple is suing a tabloid television program for using the Associated Press photo without the couple's permission in a satiric piece making fun of reality television. In addition to using the photo without the couple's permission, the tabloid program also created doctored images of the couple for the piece.

News of the complaint doesn't help my anxiety over photos. This case sends a message that, if our photo is taken, it doesn't matter how reputable the source might be, it doesn't matter what the photo is intended for, it could wind up somewhere as a visual gag.

But I am also hopeful because of the complaint. And I am proud of the couple that filed the complaint. This complaint will bring to the public eye the privacy issues that all people of short stature, who are guilty of nothing but trying to live a regular life, contend with on a regular basis. And perhaps, the complaint will give us a tool with which to fight back against violators of privacy.

Freeburg Tee-Shirts -- Midwest Advocacy Trip-- Part III

In the last post, I alluded to a difference between Ethan and me. During our tour of the high school, Ethan told the principal that a student openly called us 'midgets.' I probably wouldn't have done that. Ethan made the right call. It was better for the principal to know what happened, considering he later told the assistant principal and the superintendent about the incident. The tour was not the only time during the visit that Ethan's more aggressive approach reaped a positive outcome.

As part of the student interviews, the first day of our visit to Freeburg we asked the student groups what they believed other high school students, outside of Freeburg, thought about the Freeburg Mascot. The majority of the students gave a positive response. At least two of the groups related the positive response in the form of anecdotes about the Freeburg Midget Tee-Shirts. They told us stories about wearing the tee-shirts while away at camp, or while visiting relatives out of state. According to the students, many people, who saw the tee-shirts, wanted one for themselves. "Where can I get one of those?" people outside of Freeburg would ask the students. "They think it's unique," the students told us, when we asked why people outside of Freeburg would want a shirt.

Between the student interviews, and our presentation to the School Board, Ethan and I didn't have much time to reflect. But while at Steak & Shake, we talked about what it meant that the shirts were so popular outside of town. We found it difficult to believe Freeburg school spirit extended well beyond the city limits of Freeburg and the Illinois state line. We knew that the popularity of the shirts had more to do with the antiquated popular culture representation of dwarfs as inherently funny because of their physical difference. Also, in the face of rising awareness against use of the word 'midget', the shirts give people who believe physical difference is funny a free-pass to use the word.

While at dinner, after Ethan mentioned that we should mention the shirts at the school board meeting, I (the cautious one) suggested that we do so by raising the question, "Why are the shirts so popular, because of school spirit, or objectification of difference?"

At the meeting, Ethan didn't present it as a question. He basically told the board that people outside of town aren't buying shirts because of their love for the high school. My heart started beating a little faster while Ethan talked about the shirts, but again, his assertive nature paid off. The next day, the Superintendent brought up the sale of tee-shirt as the piece of our presentation that really stood out, and he recognized the tee-shirts as an issue that needs follow-up.

And follow-up is key. Ethan and I plan to visit six different districts as part of this Midwest Advocacy Trip. We've planned well for the visits and the interviews, but we don't exactly know what will happen after the visits. At least in Freeburg, the tee-shirt issue gives Ethan and me an open door through which we can continue to communicate our message. A message which will hopefully influence future decisions.

Midwest Advocacy Trip--Freeburg-Part II

Day Two in Freeburg, Illinois --After an afternoon of interviews with students at Freeburg High School, and a presentation to the Freeburg School Board, Ethan and I spent the night at the Econolodge, a hotel about ten miles north of Freeburg in Belleville, Illinois. We returned to the school at 8:30 a.m.the next morning.

We didn't know what was planned for us, but the Superintendent had invited us to come back. We hoped for the opportunity to interview a few teachers, though we didn't believe any faculty interviews were likely. In the last entry I didn't mention that after the student interviews, and before the School Board presentation, we met with another person (who was not a student). That person wanted to speak with Ethan and me, but asked that the conversation be off the record. I can't write about what the person said, and I don't want to over interpret anything that happened in Freeburg, but the fact that we had an off the record conversation about a high school mascot was kind of cool and suggested that maybe the issue of the mascot within Freeburg went deeper than Ethan or I knew. But whatever the conversation meant, it suggested that we shouldn't take for granted that people would want to talk about the mascot.

When we arrived in the parking lot, we were met by the Superintendent and the Principal. After the Principal said good morning, he went off to the athletic fields to deal with some sort of issue. Ethan and I went with the Superintendent back to his office, where we had interviewed students the day before. In the office, the Superintendent told us that that one more student wanted to speak to us. She had missed out on the interviews the day before because of some kind of oversight. The oversight turned out to be a good thing for Ethan and me. Interviewing a student one-on-one as opposed to within a focus group presented a great juxtaposition and suggested to Ethan and me that, at future visits to high schools, we should try to schedule focus groups and one-on-one interviews. Following the student interview, we spent about 30 minutes interviewing the Superintendent. He offered an incredible amount of information valuable to the project. Thank goodness he was happy to talk because it certainly wasn't my finely tuned interviewing skills that drew out the valuable information. At one point, as he was talking, I tried to slip in a follow-up question. Before I could speak, he put up his hand in a halting gesture and said, “With all due respect Gary, please let me finish.” What followed out of his mouth was a lot more important than any question I could have asked. After the Superintendent interview, we met with the Principal for about ten or fifteen minutes, then took a tour of the school with the principal, during which we met a few teachers and said hello to a lot of students.

The most interesting part of the tour happened in the gymnasium. Just as we stepped into the gym, class was letting out. A group of boys who had been playing badminton were making their way to the locker room. One boy who saw us, as soon as he turned the corner into the locker room, said aloud, something to the affect of, 'did you see those midgets?' The principal, who was farther away from the locker room than either Ethan or I, didn't hear him. What the boy said was barely audible to me. But both Ethan and I heard him. The difference between Ethan and me, which underscores the importance of us working on this project together, is that he told the principal what we heard. I didn't want to make the principal uncomfortable. But Ethan knew that this was a spectacular opportunity to point out that students who take pride in a 'midget' mascot aren't immune to using the word in a degrading way. In this case, here was a teenager whose mascot is the 'Mighty Midgets' using the word in a negative way within his own school. At least one of us carried his weight during our trip to Freeburg.

We hit the road immediately after the tour. I picked up a bottle of wine at a local vineyard as a souvenir (it was either the wine or a Freeburg Midget Tee-shirt). The wine was soon confiscated at the Indianapolis airport. Though I may have no souvenir, Ethan and I have a lot of great information, and a little bit of experience, which will help us as we plan for our visits to the five remaining high schools. Once the interviews are sorted out, we will figure how best to present the material. In the meantime, a tremendous thank you to the Freeburg Superintendent who organized so well our visit to the school and the school board. Without him, our first visit, if it happened at all, would never have been so smooth. He gave us insight into how future visits should be set up and gave Ethan and me perspective with which to approach our future visits. Thank yous also go out to the Principal, Assistant Principal and all the students who took time from their day to meet with us.

Midwest Advocacy Trip--Part I

This morning, Ethan, my friend and colleague, and I began the first phase of a project that will take us to six high schools in six different states. Ethan and I are both on the Executive Committee of Little People of America, a national membership group for people with dwarfism.

One issue important to thousands of people of short stature is language. For most people with dwarfism, the word 'midget' is a dehumanizing slur. (For more on the word, the second half of Chapter Seven in Dan Kennedy's book Little People is a good source) For years, there has been an effort to raise awareness around the meaning of the word from the perspective of people with dwarfism. That effort has generated momentum within the past several years, with reality programs featuring people of short stature raising awareness around language and with an FCC Complaint against NBC for its use of the word midget and its poor portrayal of people with dwarfism on "The Celebrity Apprentice."

Little People of America also is working to raise awareness around language. Within the past year, Ethan and I began planning a trip to high schools around the country that have the 'midget' the 'fighting midgets' or the 'mighty midgets' as a mascot. We planned to visit the schools with the intent of sharing our concerns around language, and hearing directly from people who attend the schools, who work in the schools and who live in the towns. We want to equip the schools with the perspective of a community with a very personal connection, albeit a negative connection, to the word midget. This morning at 7 a.m., Ethan and I loaded up Ethan's car and began a five-hour drive from Indiana, where Ethan and his family live, to Freeburg, Illinois, home of the Freeburg Fighting Midgets.

Long before our visit, Ethan reached out to the Freeburg Superintendent, who organized a series of focus groups with students. We arrived in Freeburg around 12:15 p.m., met Superintendent Lehman and went directly to his office. A few minutes later, the first group of students appeared. Over the next two and a half hours, Ethan and I conducted interviews with five groups of kids, ranging is size from five to seven and ranging in grade from freshman to senior. We asked a series of questions designed to get their thoughts about what they think about the mascot, what others think of the mascot, what they think of the word midget, and what they think of people of short stature. After the final interview, Ethan and I checked in at a nearby hotel, made a short trip to Steak & Shake, then returned to the school to present in front of the School Board. Before the School Board, we talked about Little People of America, language, and our initial reactions to the interviews with students.

Back at the hotel, while unwinding and watching the NCAA Tournament, Ethan said aloud "Did we just present in front of the board?" He was not alone. After months of planning, it was hard to believe we had made the first visit.

Now that our first trip is nearly over, in addition to unwinding, we'll have to sort out what we heard from the students, what we heard (or didn't hear) from the faculty and staff, what we can do with the information, and what we think Freeburg might do with the information we shared. In the days to come, we plan to report more on the themes and surprises that emerged from the conversations.

The Politics of Mini T

When I think of standard bearers for the rights and dignity of people of short stature, I don't think of TMZ, the celebrity-gossip website and television program launched by Harvey Levin.

Yet, I've always somewhat admired TMZ. On an entertainment level, I like it because the reporters don't seem to take themselves to seriously and poke fun at each other as often as they poke fun at the situations they cover. On another level, the program was ahead of the curve on language issues relating to little people. I have no statistics to prove this, but I feel cultural awareness around the word 'midget' reached a critical mass in 2009 or 2010. Since that critical mass, the word still is used, but there is a common understanding that use of the word offends large numbers of people.

Even before the word reached its critical mass of awareness, TMZ went out of its way not to use the word, and sometimes even called out celebrities who used the word. This is particularly impressive of a celebrity gossip show. In my opinion, tabloid television, stand-up comedians, radio shock jocks, and throngs of young hulligans in bars pose the greatest threat of delivering offensive language, whether it be offensive to little people or other minority groups.

With that in mind, when I come across episodes of TMZ, in certain segments, I still expect to hear the word 'midget.' That happened today as I watched part of an episode. After a segment about Sharon Stone, one of the TMZ reporters transitioned in a segment about his encounter with "mini Mr. T,"- a little person who dresses up like Mr. T. I watched the segment, waiting for someone in the gang of reporters at the TMZ office to drop the m-word. But it didn't happen. In fact, the discussion at the office even became political. On camera, Mini Mr. T told the TMZ reporter he was available to rent for parties. He also commented that St. Patrick's Day is a good time of year because many parties rent out little people as Leprechauns. Back at the TMZ office, Levin and the other reporters questioned the morality of hiring individuals for entertainment just because they are physically different.

I don't want to hold up TMZ as a beacon of morality. At times, the segment dripped with condescension and one reporter's anti-Semitic joke was not edited out. But I can't help but be pleased when a tabloid reporter delivers the line, "That's why it feels wrong because you are renting someone based on the way they were born."

Anxiety of the new and the different

A few days before I started sixth grade, my older brother, a few kids from the neighborhood, and I were hanging out in the street outside our house. As much as possible, especially during the summer, my brother Erick and I tried to organize baseball games. We usually played in the street, with a tennis ball instead of a baseball. But the other kids weren't as enthusiastic about baseball as Erick and I were. I know this because one summer, after my family had returned from two weeks of vacation, the neighborhood kids reported that not one game of baseball was played in absence. So, in addition to baseball, we'd play capture the flag or we'd shoot baskets across the street, at Scott and Kevin's house. Once, when no one else was around, Erick and I invented a game called 'double play,' a game in which we pretended to be baseball infielders. We'd throw each other tough grounders then try to turn double plays. We'd simulate entire nine inning games within the double play context. The poor imaginary pitcher never had a chance to throw a no hitter because every inning started with a base hit or two in order to set-up a double play situation.

On a late summer night in 1981, just before I started sixth grade, I am not sure what Erick and I were doing when our friend Peter, from just around the corner, showed up. We started talking about the start of the school year. Peter and Erick were about to start eighth grade. In the Madison school system, middle school included sixth through eighth graders. Sennett Middle School, which I would be attending with my brother, was set up using the House System. Houses included four classrooms each. Classrooms would be made up of sixth, seventh and eighth graders. You spend the bulk of the day in the main classroom then divide up according to achievement levels for Math and English. At Sennett, unlike the previous six years of my education, I'd be spending most of the day with students one and two years older than me.

At one point, when talking about the new year, Peter, referring to me, said something to the affect of, "I'll bet you are going to have to put up with a lot of crap." He meant that because of my dwarfism, I might be the victim of teasing. Peter's remark didn't do anything to ease the anxiety I already felt about starting a new school year, at a new school, with students from other elementary schools.

Luckily, I probably had some things going in my favor to ease the transition. I was placed in the same House with my brother, who was liked and respected at Sennett, I was not that bad of a guy, and kids, even strangers, can be nice if given a chance. As a result, my transition to middle school went pretty smooth. Not every day was great. I was once the subject of brutal mockery. But the mockery had more to do with my crush on an eighth grader. I don't think my dwarfism was ever the subject of ridicule.

I was reminded of sixth grade recently after reading a column in the New York Times called "Nice Girls." The column was written by John Moe of National Public Radio. Moe has a daughter with dwarfism who is in second grade. He has done other stories about dwarfism, once in response to a character in a Michael Meyer's movie, and once in an interview with Mark Povenelli about Hollywood roles for people of short stature. He also once replied a question Ken Jennings (the Jeopardy guy) once posed on his blog. Jennings asked if it is okay for him to refer to his children as "midgets." In the "Nice Girls" piece, Moe worries about how his daughter may be treated by her peers as she grows older. But then an experience on a bus, during which he overhears a group of teenage girls, gives him reason to hope.

I understand Moe's anxiety. I felt it just before I started sixth grade. I felt it just before I started high school. I felt it before I entered college. I feel it today every time I enter a crowded bar or I am about to meet a new group of people. I think each of us, no matter if we have a disability or not, feels a bit of anxiety every time we enter a new situation. We worry what people will think of us, and whether we will be judged, not by our personality or who we are, but because of what we are. I don't think there is any formula for drilling past superficial tendencies within a new environment. Sometimes we will be embraced. Sometimes we will have trouble breaking through pettiness. But I do think it's important that we keep moving forward. If we have an interest or a passion or a goal, and if pursuing those passions requires us to throw ourselves into new situations with new groups of people, we should embrace the anxiety that comes with it. We won't always be successful, and sometimes we will develop some scars. But more times than not, we will, and the new people we meet, will be better off for it.