Thursday, July 29, 2010

Evening in the Park

About a month ago, my wife Katie and I went to Millenium Park with a picnic dinner to listen to music. One of the best things about Chicago is the free entertainment during the summer months. Throughout the city, from May through September, you can find a free movie, free music, and free dancing every night of the week at one of the city's many parks. Our favorite is the free music at Millenium Park, which has seating for several hundred just outside a large pavillion and several football fields worth of lawn space just beyond the seating. The park is set up with large poles criss crossing horizontally all across the lawn space. Speakers hang from the poles so that no matter where one sits on the lawn, even the very back, the sound is perfect.

While we sat in the park, listening to music, and eating from a picnic basket, we were approached by two young girls. The girls gave us a hard time because they were unfamiliar with dwarfism. The experience stayed with Katie for a long time. She eventually wrote it down and read it aloud on Friday, July, 23 at the Disability Pride Parade Open Mic. Below is her story.


Evening in the Park
By Katie Arnold

Relaxing at the park, listening to music and having a picnic dinner: my husband and I. Still newlyweds, we are soaking in the joys and challenges of married life. Our peace is interrupted, as it often is, by a look of shock and fear from a passerby.

I’ve come to get used to the stares and the taunts from strangers. Sometimes I hardly even notice and more often my husband is oblivious. It is part of his life and comes with the package. A package deal of being with someone with dwarfism. Shorter arms and legs is the only difference, yet seems “freakish” to most. I’ve come to anticipate a spectacle that strangers create when we walk down the street and live our lives. The points and laughs and inappropriate questions and invasion of personal space are all par for the course. There are some “teachable moments” and other humiliating interactions. It can feel like a test—a test of character and will and power and control and love. This has become common and part of my life.

Yet this experience at the park is distinct. I stand, dancing to the music by myself while my husband, Gary, sits on our blanket. Pointing, the taunts begin: “You’re fake—you’re not real!” They echo over and over. This is a new one, I think, what does it mean? The look of fear clues me in and I bend down to talk to a little girl of about 5 years old: “It’s okay, there is nothing to be afraid of. This is my husband and he is shorter than most men.” Gary attempts to engage the little girl: “What’s your name?” he asks. “He sounds like a robot!” she screeches to her friend before racing off.

Gary and I exchange a confused look and shrug the whole thing off. I continue to dance and try to urge him to join me, to no avail. Hundreds of people are scattered around us on blankets and in chairs enjoying the evening. Each group of people is in their own cocoon as the surround sound speakers at Millennium Park create a buffer of music between conversations of groups right next to each other. I try to take it all in and appreciate Chicago in the summer.

About five minutes later, the children are back. Two super cute girls of only 5 or 6 years command our attention as they march toward my husband on a mission. I wonder if they will ask the typical questions that kids often ask: “Why are you short?” Or “how old are you?” Or maybe the more pointed: “What’s wrong with you?” All of which Gary has much experience responding to. Curiosity, after all, is natural, for children and adults alike.

The kids point at Gary and begin shouting taunts and laughing at him. The girl in the red dress takes the lead while the other girl hesitantly follows, learning as she goes. The taunts go on…and on and on…and on. Gary smiles at the girls and tries to engage them by asking questions—a strategy that usually works and helps humanize the situation for him and them. The taunts continue. I bend down with a smile and begin talking to the girls, trying to stop their broken record through education or mere distraction. Yet, they are singularly focused on making fun of Gary. We try various tactics to dissipate the uncomfortable situation and extract ourselves from this annoying onslaught and disturbance. I begin to feel helpless when nothing is breaking the dynamic. This situation is going from uncomfortable to miserable with no end in sight.

The one tactic that hasn’t been used yet is anger, yet it begins bubbling inside me. This is a last resort because I’ve learned that once you tip into that territory there is often no turning back. Stern words can often be effective, but if they are not, you can be left in an emotionally vulnerable state without many other options left at that point.

“Where are their parents?” I wonder silently, and then a woman appears. “Are they okay?” she asks me. I look at her with wide-eyed wonder. “I’m their mother,” she explains. I consider my response before replying in a measured tone: “No, they are being extremely annoying.” Now she mirrors my previous wide-eyed wondered look. I briefly reflect on the relentless nature of these children’s taunts and conjure a picture of bully’s on the school playground. This is a rare and disconcerting interaction that I have little experience with. I take an honest approach with the mother and tell her, “Children are often curious, which is natural. But these girls are not, they are being mean.” Her mouth gapes in horror and she says, “I’m so sorry, what do I need to know to follow up with them?” I look at her with empathy, she seems like a mother trying to figure out a difficult situation and wanting to teach her children to be respectful and to embrace difference. For they are different: from each other and from most families as a mixed race family. I imagine reading the mothers mind thinking how her adopted children may encounter situations like this themselves and her horror at them being the cause of such an occurrence.

As I speak with the mom and provide her some information to “follow up,” her girls continue to mock my husband. She can’t hear what they are saying, even standing a short distance away, due to the sound buffer created by the music. Only Gary can hear their exact words as they are eye-to-eye and in his face. But I can tell from his expression that it is not pleasant. I quickly finish talking to the mother and she jumps into action, bending down to the girls and telling them to stop and come with her. They are gone and I stand there baffled at what just transpired.

What probably lasted two minutes, seemed like an eternity. A wave of disgust washes over me and I can’t wait to get home and take a shower. Inside, I’m furious that we had to experience that. I’m furious that we weren’t able to stop that. One of the most disturbing aspects was how relentlessly mean-spirited these girls were at such a young age. I question what else we could have done to avoid or dissipate that. I question my own competence and power and control and love. That was upsetting. And I can’t quite get my head around it. All these thoughts stew in my head while I sit back down on the blanket next to my husband. Everyone around us does not seem to have noticed anything, insulated by the music in their individual cocoons. As the music continues, we cuddle up in our own cocoon and continue our evening and continue our lives.

Sunday, July 25, 2010

Pride Revolution -- The 2010 Disability Pride Parade

Last year, I wrote about marching with Little People of America in the 2009 Disability Pride Parade as a significant experience. In a way, marching with five or six other little people was an experience that turned the tables. As little people, because of physical difference, we are often the subject of attention. Attention for which we most often don't ask. But as part of the parade, we asked for attention. We wanted the people who lined the streets along the parade route to look at us and cheer. The experience was empowering because, unlike so many other times in public, those of us who marched as part of LPA in the parade asked for the attention. We were in control.

With the memories of the 2009 Parade still fresh in mind, I looked forward to the 2010 Disability Parade. Judging from the number of people in the Chicago area who said they'd march with LPA, I thought we'd have our largest LPA contingent ever. I looked forward to an experience even more empowering than 2009.

The weather threatened to interfere with my parade hopes. The night before the parade, the skies opened up with a furry. From my bedroom, the rain pounded against my windows. Lightning flashed and thunder roared throughout the night. In some areas of Chicagoland, more than five inches of rain fell within just a few hours. So much rain that at least one Chicago expressway and two train lines shut down.

Though not as hard, the rain still fell in the morning, discouraging many people who signed up for the parade to leave their homes. Many wanted to come, but couldn't make it downtown because of the flooded highways and "el" tracks, (fortunately, I live just a few blocks from the parade step-off area).

A few minutes before the start of the parade, I walked down the street on which the floats, vehicles and groups of people lined up. I didn't see anyone from LPA. I was disappointed, but not too surprised. I knew that because of the rain the Orange Train Line was down in some spots. Tom and Laureen Lash, the organizers of the Chicago LPA contingent, take the Orange Line to get downtown.

As the parade started, I put my Access Living (a disability non-profit for which I work, with a large contingent in the parade) shirt over my LPA shirt and jumped up on the organization's float. The Chicago Disability Pride Parade has been around since 2004, but this was the first year I rode on top a float. It might not be the same as riding in the Gay Pride Parade with the Stanley Cup, but I got a thrill out of waving to the crowd along with about 30 other Access Living staff, consumers and volunteers on top of the float, especially when the driver, for reasons unbeknownst to me, periodically gunned the engine to about 20 miles per hour.

At Daley Plaza, the end of the parade, I jumped off the float and ran about a block back down the street to where my wife stood along the parade route. For the past few years, rather than march in the parade, she has organized groups of people to come cheer the parade. She stood at the corner of Dearborn and Madison with our friend Tekki, a local LPA member who cheers along with Katie. "I couldn't find anyone else from LPA," I said when I stood before Katie and Tekki.
"There they are," Katie said, pointing south down Dearborn.

Sure enough, there they were. About two blocks down the street, a good one block behind the nearest other contingent, I could see Tom and Laureen, along with Dave Partak and one other person I didn't recognize. Turns out, instead of taking the Orange Line from Midway Airport, the group took a shuttle bus farther north along the train line to a spot where the tracks weren't affected by the weather. With a bit of determination, they made it to the parade, all be it after every other group had started marching. As soon as Tom, Laureen and the others were off the train, they fell in behind the last parade group. Half way through the parade, hundreds of feet separated them from the second to last contingent.

"Let's go join them!" Tekki said. We started back down Dearborn, waving to the four members of LPA as the gap between us closed. After Tekki and I joined the group, Tom quickly explained what happened, then the six of us started marching again. Since we were the last group, several police squad cars, and a police van, which served as parade escorts, were right behind us.

Considering the number of times that I've explained how empowering the 2009 parade was (twice here and many other times to anyone who will listen to me in person), I was a bit overwhelmed when I looked up at the remaining two blocks between our group and the end of the parade. It's one thing to be surrounded by other screaming groups within a parade. But this year, we were all alone. The next to last group had nearly finished. It's not like thousands of strangers lined the street like the Saint Patrick's Day parade, but a lot of people were out and about, and everyone of them, many with cameras, was looking at us.

But I soon channeled my feelings into my memories of 2009 and of the excitement leading up to the parade. As we moved north up Dearborn, I waved and shouted out, "LPA," "LPA." When our small group reached Madison, Katie ran out from her perch on the corner, took our photo, and shouted "you gotta do a cheer." None of us knew any "LPA" cheers, so Katie suggested we do the traditional, 'gimme an L', etc. So we did. And some people along the curbsides joined us, cheering us as we passed -- cheering us for who we are. Not, as many people of short statured have experienced at times in their lives, jeering us for what we are not (average stature). It was pretty cool.

The more parades we have, the more we will distance ourselves, not just from those memories but from a culture that festers such behavior. No matter what the weather next year, and no matter what size the LPA contingent will be, I look forward to the 2011 Disability Pride Parade.

Thursday, July 22, 2010

Each of our problems are "our" problems

"We have to stop working in silos. Each of our problems are our problems."

The quote above came from a guest speaker at a meeting of the Justice For All Action Network Steering Committee on July 20. The entire Steering Committee met face to face for the first time since the network started a year and a half ago. As a national, grassroots, disability organization, Little People of America was asked to join the Steering Committee of the Justice For All Action Network when it first formed in the wake of the 2008 Presidential Election.

The meeting was in Washington, D.C. in the midst of the National Council on Independent Living's Annual Conference. The speaker was asked to comment on progress of the disability community in terms of integrating policy issues into the Obama Administration's Agenda. The speaker said the community needs to be more strategic, and work together in a coordinated effort to advance policy that benefits everyone. If each group pursues a separate agenda, the community as a whole will struggle to move forward.

Important feedback for the at-large disability community, and specifically for Little People of America. Over the past year or so, LPA has been conscientious of developing a more strategic approach to advocacy -- attacking issues from a systemic perspective rather than a purely reactionary perspective. But LPA has room to grow in terms of internal and external power, and could do so if the organization were to identify policy issues that benefit LPA and impact disability groups outside of LPA. If we were to work with other groups on a joint campaign (i.e. anti-bullying legislation), LPA membership would witness the support of groups outside of our own, and outside constituencies would witness the support of LPA. This could empower the LPA membership to organize and rally more tightly around specific issues, while also enhancing our credibility in the broader disability community as well as the general population.

This is not entirely new to LPA. LPA participated in JFAAN's efforts to pass inclusive health care reform legislation. But we have the opportunity to do more, and we need to do more, not just for the sake of LPA, but for the sake of the larger community. By identifying policy issues around which we share common ground with other organizations, we not only will build more power as a community and an organization, we could improve the lives of people with disabilities and people with dwarfism.
(photo -- the day after the JFAAN Meeting, as part of the NCIL Conference, we marched to the U.S. Capitol for a 20th Anniversary ADA Celebration Rally. In this photo are JFAAN members Andy Imparato of the American Association of People with Disabilities and Kelly Buckland of NCIL; and Tony Coehlo, the orginal author of the Americans with Disabilities Act.)

Sunday, July 11, 2010

Keynote Address at LPA Awards Banquet --2010

I was nervous when Kathy Martinez, Assistant Secretary at the Office of Disability Employment Policy at the Department of Labor, took the podium for the keynote address at the 2010 LPA Awards Banquet. I hate to underestimate the crowd, but in my experience, I don't remember there ever being a keynote address at an awards banquet. Usually, the program included the relatively quick presentation of scholarships and service awards, then it was on to the dance. My trepidation had to do with the fact that a keynote address would add more time to the program and with the potential content of Martinez' address. I figured she would talk about the larger disability community and LPA's role within it -- an important topic but on the whole but I think LPA is still working toward embracing the identity of disability.

Secretary Martinez quickly calmed my fears. She stepped up to the microphone and roared out a "hello LPA!" with a delivery that reminded me of Robin Williams in Good Morning Vietnam. After securing the crowd's attention, she tried for the admiration of the crowd by recognizing LPA's reputation as the best party organization within the disability community. She added that LPA also was earning a reputation for using the media and popular culture to shape positive images and messages about dwarfism specifically and disability in general. Though credit is due more to the individuals behind the camera in shows like "Little People, Big World," and "The Little Chocolatiers," she acknowledged LPA for using reality television to promote positive messages.

Throughout her speech, Martinez shared anecdotes about her experiences at conferences for the blind community. Poking fun at her own community, Martinez explained that "On the first day of a blind convention. You recognize voices from across the room of friends you haven't seen for a year. You are so excited to reunite with your friends, you room across the room to say hello, knocking over buffet tables and innocent bystanders along the way." Martinez told the story much better, and much funnier. As she shared the anecdotes, I thought about how important it is for people with disabilities to tell stories in their own voice, and how different the story may have been coming from Fred Armison (aka Governor Patterson of New York) on Saturday Night Live.

Martinez ended her keynote with a call to action, challenging LPA to take shaping positive images a step further. "You've been able to work in front of the camera," she said. "Now it's time to take it behind the camera." She said the LPA has taken the opportunity to appear on television in roles and situations created for us. But now it's time to create our own opportunity and our own roles. As she challenged the audience, I thought about how many times a year I receive emails from producers looking for individuals to cast in the next reality show that happens to include little people. Looking forward, instead of waiting for the next email about the next "great idea" for a reality show, LPA and the dwarfism community needs to come up with our own ideas.

Thursday, July 8, 2010

Awards Banquet -- LPA National Conference

Tonight is the Little People of America Conference Awards Banquet. I think this year the banquet is particularly exciting because Assistant Secretary Kathy Martinez of the Department of Labor's Office of Disability Employment Policy will present the keynote address. The banquet rarely features a keynote speaker, and a speaker in Martinez' position is a great inroad into more participation between LPA and the broader national disability community.

Here is a link to local coverage of the conference in Tennessee.

Sunday, July 4, 2010

LPA National Conference - Nashville -- July 4, 2010

Two days in Nashville for the Little People of America National Conference.

Saturday, July 3, I sat all day in a board of directors meeting. Though the organization has accomplished some positive work over the past year, the meeting was pretty standard, filled with reports of what had happened in the past 12 months, and requests for funding to make similar achievements in the year to come. I wish the organization were at a point when annual meetings were spent developing a bold vision for the upcoming year. For example, setting goals that would position the organization in Washington D.C. or setting a clear plan for creating a full time staff to work on policy issues.

Today, Sunday, July 4, I sat in on a meeting of the Medical Advisory Board, a volunteer group of doctors and geneticists who consult for Little People of America. The board is a huge value to the organization. Each member offers free consultations to members of LPA during the conference. Without the MAB, some LPA members would never have access to a doctor with experience in the field of dwarfism. During the meeting, the board addressed a few very serious issues, like a 66 percent rate of hypertension among males with achondroplasia and a five percent mortality rate among achodroplastic dwarfs under five years of age. Without the Medical Advisory Board, I am not sure what group would pursue the concerns, and if another group did, would LPA have such close access to the group?

That being said, I couldn't help but think of the dichotomy between the medical model within LPA and the model within Access Living, where I work my nine to five job. Under the theory of the medical model, it is doctors who know what is best for a person. Under the medical model, a person's disability, or impairment, is something to be fixed. At Access Living, advocates strive to give voice to the person with a disability, not the doctor. At Access Living, it is not the doctor, but the consumer, that knows best. Access Living fights against the medical model.

On the other hand, here are a few examples of the strength of the medical model within LPA. Speaking about the mortality rate and the importance of screening young dwarfs, a doctor on the board said, "there is no substitute for clinical judgement or a clinical exam." Another example is a workshop led today titled "Quality of Life." Each presenter was a member of the Medical Advisory Board. Finally, the board was critical of a workshop on hearing loss organized without any input from the Medical Advisory Board. The workshop was run by a person who has experienced hearing loss. As I sat in on the Medical board meeting, I imagined what some Access Living advocates might be thinking. I wondered if they would speak up? I was in no position to, nor did I think it a good idea. While a person who has experienced hearing loss is certainly qualified to speak about the subject, and a quality of life workshop should include someone outside of the medical profession, there is room for every "model." The difference between the existence of models within Access Living and LPA underscores the importance of taking the best of both models.

Friday, July 2, 2010

Nashville Tennessee -- LPA National Conference

Arrived in Nashville Tennessee late this morning for the start of the 53rd Annual National Little People of America Conference. Though last year's Brooklyn Conference was thrilling, and game changing to same extent for LPA, I hope we avoid any controversy this year. Controversy came when the Associated Press ran a headline claiming LPA wants to "ban" the word midget. The organization did officially recognize the word as derogatory and issued a statement. The idea was to raise awareness around the word in order to convince the public to stop using the word. Once word of the ban reached outlets outside of the Associated Press, a backlash started. Many groups and organizations criticized LPA as just another "pc" group infringing on the country's First Amendment Rights.

In hindsight, perhaps the rumor of a ban helped. Coverage of the issue spread faster and wider than it otherwise would have. And in the end, when the supposed controversy settled, the public was left with more information about why the word midget is so harmful. My guess is that fewer people are using the word today than used it a year ago. Whatever the outcome, the 2009 conference was very challenging and exhausting because of the controversy. This year, unless the Half-Pint Brawlers make an unexpected appearance, I am not expecting any controversy.

I hope to avoid controversy, but I do hope LPA can position itself at this year's conference to make some important progress in 2010 and 2011. Specifically, I hope we can solidify our advocacy committee. We've built a membership over the past year and a half, but we need to find a common ground to unite the committee and energize it to work together. Also, I hope the organization starts to position itself more in the context of the larger, national disability community. Many talented people are members of the organization and could contribute their expertise to the national disability agenda. It's a matter of getting those people involved in disability coalitions and building LPA's voice in the process.

Speaking of voice, an organization that represents people with primordial dwarfism issued a statement recently against a British Politician who called a colleague a "sanctimonious dwarf." My favorite part of the this story is the final statement, made the man accused of being a "sanctimonious dwarf." Click here for the piece.