Sunday, July 31, 2011


When my wife and I returned from the Little People of America Conference in Southern California, she told me about a story she heard from a friend of ours. Our friend is in her thirties and is married to a person of short stature. One day during the conference, our friend went out to lunch with a couple. The couple is typical stature and they have a daughter who is about seven years old. The daughter joined them at the lunch. At some point during the meal, the daughter, unhappy, said something like, “I don't want to be here (she meant the LPA conference). I don't want to be a little person.” Our friend looked at the young girl with empathy and understanding. “Some days,” she said, “I don't want to be a little person either.”

I don't know if the 2011 Conference was the first time the young girl spent time with other little people, but her story reminded me, not of my first national conference, but one of the first times I spent an afternoon with a group of other little people. I was probably younger than ten years old. I had gone with my parents to a chapter meeting somewhere near Milwaukee Wisconsin. My parents were inside the house of the family hosting the meeting. I was standing on the sidewalk outside with a guy who was probably in his teens. My parents had been looking forward to me meeting this teenager. I think they believed he would be a good role model. “He lifts weights,” my mother said from the front passenger seat of the car as we drove to the meeting. She turned and looked at me for a few seconds, with a big smile on her face.

This teenager and I stood outside the house, hoping the meeting would be over soon so we could be on our way home. I don't know what we had been talking about. Perhaps I had asked him about weight lifting. But all of a sudden this guy told me he was a fast runner. “Okay,” I said. I wasn't about to tell him I was a fast runner also because I always finished last or second to last in gym class races. Though I didn't doubt he was a fast runner, he wanted to show me. He took off his jacket, took a mark on the sidewalk, then sprinted about 30 or 40 feet. When I show him run, I was shocked. Sure, he was fast. Probably a lot faster than me. But it was how he ran that struck me. The way he moved looked a lot different than the way my peers in gym class looked when they ran. I also knew, the moment I saw the teenager run, that I looked the same way when I ran.

I had seen myself in plenty of mirrors. I knew I was shorter than everyone else my age. I knew that my body was shaped different than the body of my peers. But the sight of the teenager running underscored my difference more strongly than ever before in my life. It was as if that moment was the first time I understood how physically different from most other people I actually was. The moment was a bit overwhelming. I was younger than ten years old. It wasn't like I all of a sudden saw my entire life in front of me as a marginalized person. I didn't see anything beyond third or fourth grade, or whatever grade I was in at the time. But it was still a bit overwhelming, to see myself as different from the rest of my school mates.

I imagine the girl who had lunch with my friend also felt overwhelmed. She probably understood that she was physically different from all of her friends at home. She didn't want to be different, and she didn't want to be around thousands of other people who reminded her of how different she was. But I am glad the young girl's parents brought her to the conference. If she isn't already, one day the young girl will be glad her parents brought her. I am glad my parents drove me to the meeting many years ago. Because at some point, my friends and peers within LPA became much more than a reminder of my physical difference. They became a base of support with which I can manuever through the challenges that a world which doesn't always embrace differences poses. And they became a base of support with which to build awareness and make changes so that, little by little, the world opens up to do a better job of accommodating differences. Like my friend said, there are still some difficult times. Maybe there are some days when it doesn't feel good to be a person of short stature. But that's not my fault, and that's not the fault of the thousands of other little people in the country. If it were, most of us probably wouldn't come back to the national conferences year after year.

Friday, July 29, 2011

2011 Disability Pride Parade

Last Saturday, about 2,500 people marched in the 8th Annual Disability Pride Parade in Chicago. People came from far reaches of the country, and people from outside of the United States. In one way or another every parade participant made their way to Chicago to celebrate disability history, celebrate disability culture and draw strength from the support generated by thousands of empowered people.

Each year, I look forward to parade because of the opportunity to bring people together for the Open Mic on the eve of the parade, and the chance to march with Little People of America. For several years in a row, my wife and I have organized the Open Mic. For the Open Mic, on the evening before the parade, a group of about 60 to 80 people gather at the First United Methodist Church, which is across the street from the plaza that plays host to the program that follows the parade. Then, about 20 performers are given five minutes to recite, read, sing, dance or just talk up on stage.

This year, I tried to make the event a little better than in years past. I tried to tighten the production. Rather than introduce each performer one by one, I divided the performers into groups, setting it up so that each performer within his or her respective group would follow one after the other without individual introductions. The goal was to streamline the production and to give the transitions between performers a more polished feel.

My plan didn't work. I did not do an adequate job of prepping the performers, and I didn't assign a stage manager whose job it would have been to shepherd the performers to the wings just before their spot in the program. As a result, there were big gaps in time between performers, and I often had to retake the stage to remind a performer it was his or her turn to address the audience.

In addition to tightening the Open Mic performance, my other goal was to increase the number of people who marched with the Little People of America contingent on the day of the parade. Two years ago, either seven or eight people marched. Last year, because of the rain, we had only four or five. This year, I hoped at least ten would march. At the start of the parade, only five people lined up to march with Little People of America.

Though I didn't reach my individual goals at this year's parade, I did learn something that goes beyond any personal successes or let-downs of mine. Each previous year of the parade, I'd reflected on what the event meant to me. Afterwards, I would talk about what pride and empowerment meant to me. This year, perhaps for the first time, I understood what the parade means to the community.

At the tail end of this year's Open Mic, Catherine Odette, the 2011 Grand Marshal and an organizer of the Disability Pride March in 1992, spoke to the audience. In front of the microphone, Odette stressed the importance of the individual disability voice. She underscored the value of getting in front of a microphone, in front of scores of people who will actually listen to you and support you, and saying, singing or reciting whatever one desires. For Odette, the transition times between performers and the introductions of the performers didn't matter. What mattered was that we all had a stage from which to express ourselves. Though I hoped for a Tony worthy performance, the point of the Open Mic is not accolades. It is to give everyone several minutes of stage time.

My eyes opened again, a few times, on parade day. Little People of America started with a group of five, including my friend Joe from LPA, who was marching in the parade for the first time. By the time we finished, nine people were in our group. First, as we marched, one of Joe's friends who had come from Michigan, and a friend of hers from Chicago, joined our group. Then a local woman, who volunteers where I work, joined our group. With the additions, our LPA group was up to eight people. With just a block or so left before we reached Daley Plaza and the end of the Parade, just as we reached the building where my wife Katie and her friends were watching the parade, Tekki of LPA joined the contingent. Earlier in the day, Tekki had left a message on Katie's phone, telling us that she wouldn't be able to make the event. But there she was, with Katie and her friends. When the LPA group approached the spot where Katie and her friends were positioned, Tekki moved into the street to join us, bringing our numbers to nine. Later, I asked Tekki, “I thought you couldn't make it?” She looked me straight in the eye, with a very serious expression. “I wasn't going to,” she said, and paused. “But I just had to come.”

That evening, long after the parade and the parade celebration in Daley Plaza, a group of us hung out in Joe's hotel room. We sat there, drinking beer, eating pizza and sharing stories about everything from work, to disability, to homework assignments back in second grade. Joe's friend, who had come from Michigan and joined LPA's contingent in the parade, was also in the room. I had met her the night before after the Open Mic. From her stories on the night of the Open Mic, at the parade, and in the hotel room, it became clear that this weekend was much more than a five block walk up Dearborn Street in downtown Chicago. From her stories, it became clear that just days before the parade, she wasn't sure how she would get to Chicago. And once she was in Chicago, she wasn't really sure where she would stay. But one thing was clear, she was coming to Chicago and she was going to march with thousands of other people with disabilities. She wanted to feed off the empowerment, and, like Tekki, she 'just had to come.'

Listening to what Tekki had to say, and to what Joe’s friend from Michigan had to say, I realized how important parade weekend is to hundreds of people. It doesn’t matter how polished the transitions are between speakers at the Open Mic, and it doesn’t matter how many people march with LPA in the parade. What matters is that everyone who has something to say is given the chance to say it, and that everyone who wants to be at the parade can be a part of it.

Thursday, July 14, 2011

Presidential Powers

Earlier this year, I decided to run for President of Little People of America. The election was held by mail-in ballot in the Spring. I ran unopposed. Luckily, no write-in candidate derailed my candidacy. On July 1, I traveled to Anaheim, California for the Little People of America National Conference where Lois Lamb, the outgoing leader of LPA, turned over the presidential gavel to me.

I've been back from California for more than a week. Next to graduating from college, clawing my way through student teaching, and getting married, moving into the role of president is probably one of the most significant things I've done to this point in my life. With that in mind, I expected to return from the conference with all kinds of significant thoughts and ideas to share.

But I have few if any profound thoughts. I just keep thinking of one specific anecdote from the trip to California. On Tuesday, July 5, more than half way through the conference, I went to the conference registration room. The room was on the first floor of the hotel near a large grand ballroom. There were usually three or four conference committee people stationed there. They spent their time updating registrations, making last minute logistical changes to events, and answering a lot of questions. When I went to the room, I usually asked a lot of questions or borrowed a printer. On Tuesday morning, I went to the registration room around 10 a.m. I needed to pick up a few badges for members of the media expected to arrive at the hotel later in the day. I found the doors closed. Evidently the computers had crashed. The staff running registration wanted to keep the doors closed until the system was running again. A volunteer was stationed outside the doors. His job was to make sure no one came in the room. "May I help you?" he said, when I approached the room. I told him what I wanted. He wouldn't let me in the room.

Everyone who attends the conference is required to wear a name badge. I had mine on. I was also given a ribbon that indicated I was the president. I was supposed to attach the ribbon to my name badge. But I wasn't wearing my ribbon. I never took the ribbon out of my registration packet. I justified that move with the excuse that officially I wasn't going to accept the gavel from Lois until Wednesday. In reality, I was a little nervous to put on the presidential ribbon. Until I became more comfortable in my role, I didn't want to draw more attention to me than was necessary. I was afraid the ribbon might draw unnecessary attention.

As I stood in front of registration, I wondered if the volunteer knew who I was. I had no recollection of meeting him ever before. I wondered if he knew I was the new president. For a moment, I considered telling him who I was. But I didn't. Instead I asked him to relay some information to the people inside of the registration room. He agreed to deliver the message and I told him I'd be back in a few hours to pick up the badges.

Everything worked out fine. I returned around noon to find the registration room open and the computer system back on line. I picked up the badges and went about my business.

Later in the day, I heard a story about someone else who had wanted in the room while the computer system was down. I never verified the story. Maybe it didn't really happen. But according to what I heard, this person demanded that the doors be opened, even though the system was down and the people running the room wouldn't be of much help without a functioning computer system.

Whether the story is true or not, it made me feel good about my encounter with the volunteer earlier in the day. I am glad I didn't tell him I was president. For all I know, he wouldn't have cared. For all I know, even if I had told him who I was, he still would not have been allowed in the room. My presidential standing wasn't going to fix the computers. But I think that is the point. Whether one is the President of the United States, the President of a book club, or the president of a non-profit organization, the privileges or the powers that come along with that title are not about the individual who holds the position. I shouldn't be treated differently just because I am an officer of the organization. Any powers and privileges associated with the position of president of LPA should be used for the benefit of the membership and the dwarfism community, not as a wedge to get through a closed door.

Over the next three years, whether I wear a ribbon on my name badge or not, I hope I do bring a lot of attention to myself as President of Little People of America. Not because of a title and not because of who I am. But rather because of what I've done, and what the LPA community has done on behalf of the dwarfism community.