Land of Liberty

The group from the United States at the 

International Dwarfism Summit in Berlin

On October 14, my wife and I arrived in Berlin for the first-ever International Dwarfism Summit.  At the airport, after we picked our luggage from baggage, I took my place in line at a currency window to buy $50 worth of Euros. As I waited, a man talking on a cell phone cut in front of me.  I moved around him, then stepped in front of him, reclaiming my original place in line.  For a few moments, the man didn't notice. But eventually, the man looked down and saw me.  A smile appeared on the man's face and he began to speak to me very quickly in German. While he spoke, he continued to smile, a smile that seemed to be on the cusp of breaking into a laugh for lack of control.  I didn't understand a word he said.  But when he spoke, I stared up at him, with no smile on my face. Abruptly, the man stopped talking to me, went back to his cell phone, and walked away from the line.

Prior to my trip to Germany, I didn't study any German Language. I know only a few words. I have no idea what the man said to me.  But, my guess is that the man didn't intentionally cut in front of me. I don't think he saw me.  When he finally did notice me in front of him, he figured out what had happened and tried to explain it to me. If he didn't see me, it's no big deal.  I had a problem with the man's smile. I could have been wrong but to me the smile betrayed a condescension and superiority, the same kind of condescension that some adults use when talking to children, and that many people use when talking to people with disabilities.  That is why I neither smiled nor nodded back to the man.

I've heard people say that, in terms of accepting differences, or more specifically accepting dwarfism, some cultures are better than others.  Prior to my travels to Berlin, I wondered what it would be like as a little person in Germany.  More so, because 80 or so little people were expected to attend the conference, I wondered what it would be like to be out and about with a group of little people in a new country.  I only spent five days in Germany, but besides the man at the airport (who I assume was treating me different because of dwarfism, but I am not sure), it was really quite easy to get along as a dwarf in Berlin.  I am often oblivious to stares, (Once, after leaving a bar in Minnesota, a colleague a mine said he was pissed off about the number of people who were staring at me. I didn't notice any of the stares). but I didn't notice anything obnoxious, even when I was in public with other little people, a time in which I am typically more sensitive to the attention we generate.

Upon my return to Chicago, it didn't take long for the obnoxiousness to appear.  Soon after my wife and I dropped off our bags at home, we got right back on the train.  We rode up north to pick up our dog, who had spent the week with our friend. We got off at the Belmont Red Line Station, where we were going to meet our friend. On the street, just outside of the station, two women stepped around a pillar that ran from the sidewalk to the Elevated Train tracks above us. As soon as they saw me, they screamed. One ran into the street. The other turned away, starting back from the direction she had come.

"What's going on?" my wife asked me.
"Dwarfaphobia," I said, quietly, sarcastically.

The two women reappeared, slowly walking by where my wife and I stood.  My wife started to talk to them.  She wasn't happy.

"You don't understand," one of the women started, trying to explain their behavior.
My wife shook her head.  "It's discrimination, plain and simple," she said.

I am biased, but I agree. What I call dwarfaphobia is happening more and more often now. I think it's in response to the fact that there is more awareness about differences.  Because people are aware that it is becoming less and less acceptable to joke about people because of differences they can't control, people are finding new ways to justify their discrimination. With dwarfaphobia, people can say, "Sorry, can't help it. It's a legit fear. Here is my doctor's note to prove it." But a doctor's note only reflects the ignorance of the doctor. Dwarfaphobia is discrimination based on physical appearance and difference.

Even though this happened so soon after our return to Chicago, I don't think I can say Berlin is better than Chicago when it comes to accepting disability.  I'm no sociologist, but some cultures may be better than others in terms of embracing diversity.  But I think wherever one goes, there will be good days and bad days.  I think the important thing is to confront discrimination when it happens (thank you Katie), and promote dwarf pride.  There will be good days and bad days until I die. But the more we promote dwarf pride, the stronger the foundation will be for the future.  A foundation that embraces diversity that will support a wealth of good days for the generations that follow.

Rough Night in River North

Years ago, while working the Sunday Shift by myself at Arrow Messenger Service, I sat reading an article from Cosmopolitan Magazine.  The article's message said that if you are single, you need to spend every moment you can cultivating opportunities for relationships. That meant, no Friday or Saturday nights alone in front of the television.  I often thought of the article, and often laughed about it, because, as a single man, I spent many weekends by myself.  Mostly, I spent time by myself because I had nothing else to do.  But sometimes, often times, I wanted to, and I'd choose to, spend Saturday nights alone watching a movie or television.

I've been married for five years.  Yet, I still think about the article from Cosmopolitan.  I feel like going out to be social is the right thing to do.  I think about it on Friday evenings as the work week is winding down and a group of colleagues make plans to go out for a drink.  Though I like my friends at work, and I go out once in a while, it's always easier for me to go home and unwind with three hours worth of Modern Family episodes on TBS.

But this past Friday, April 10, I wanted go out with a group from work.  Someone from the Civil Rights Department was celebrating a birthday.  The plan was to meet at this Corner Tap a few blocks from the office.  Evidently, though someone from our party called the corner tap ahead of time, they couldn't accommodate our group, (isn't accessibility lovely 25 years after the passage of the Americans with Disabilities Act?).  Plan B turned out to be Chili's.  It was not far away, it had space, and it was accessible.

By the time the group was settled in at the restaurant, it was 6:30 p.m. By 7 p.m., after one Margarita, I was ready to go.  Introversion and thoughts of Modern Family had sunk in.   For some reason, it took thirty minutes to flag down the server, ask for a bill, and pay.  Leaving, because I wanted to leave much earlier, and because it took so long to pay for one drink, I was antsy.

The Grand Avenue Station along the Redline is just two blocks south from Chili's.  The Chicago Avenue Station is four blocks north.  In hindsight, perhaps I should have gone north.  But there was no reason to think anything would happen. It's hard to imagine that anything would happen within a distance of just two blocks, even if they are Chicago blocks - which are larger than the average city block, and even if it was through the heart of River North -- where many people on a Friday night drink, then drink some more.  

Crossing Ohio Street, I was just one block from the Grand Avenue Station.  Just as I stepped onto the corner at the Southeast side of the Ohio and State Street intersection, I heard a scream. Though scores of people were all around me, I recognized the scream. It is the scream of dwarfaphobia from an individual who is traveling with a small group of friends.  The individual screams, claims he or she is frightened because of a dwarf, then his or her friends laugh.  In this case, it was a group of five teenage girls.  The screamer ducked into a doorway. She stuffed her head into the corner of the doorway, waiting for me to pass.  I stopped. I didn't want to pass.  I wanted to force the teenager to look at me.

Not much time passed.  As the crowds of people continued north and south on the sidewalk, I stayed at the corner, waiting.  Four of the teenagers stood outside the doorway, about ten yards from where I stood, waiting.  The screamer continued to press herself into the doorway.  Less than a minute later, one of the teenagers said, "I've got to pee."  She, along with two others, left her friend in the doorway. They passed by me without saying anything or acknowledging me.

Eventually, the screamer pulled herself from the doorway.  She, along with the fifth and final teenager, backtracked.  They walked down State to Grand, crossed the road, walked up the opposite side of the street, then crossed back to the near side of the street once they were beyond where I stood. I watched until they disappeared into the crowd.

Half a block down the street, a woman sitting in a nice looking restaurant at a table of four pounded on the window, trying to get my attention. I stopped. All of the people at the table were women.  They were probably mid twenties to early thirties. The one who knocked on the glass, shouted at me through the window.  "Hey," she yelled out. I couldn't read the look on her face.  I couldn't tell if it was a look of recognition, as if she and I might had met at some point, or if it was a look that said, "Hey, Look at the guy."  The look on the faces of the other three women ranged, from uncomfortable smiles, to objectifying smiles.   I waited a moment.  The woman who knocked on the glass didn't say anything, or give any kind of clue to indicate that she knew who I was.  I turned my head, and walked toward the train station.

Two thirds of the way down the steps to the platform of the southbound Redline train, I stopped.  No one else was on the steps.  At the bottom of the steps was a teenage girl, maybe a little younger than those in the group I saw earlier.  She was with a boy.  The boy, who didn't see me, walked from the base of the steps down along the platform.  The girl, when she saw me, stopped and stared.  When I saw her staring, I was about ten steps up from where she stood. I stopped.  I stared back.  "What?" she mumbled, as if wondering why I stared.  The boy she was with returned.  He looked at me. He gave me a perturbed look.  I waited, standing, watching them, until they both moved on. I walked to the opposite end of the platform.

The platform was crowded. The train was still eight minutes away, a long wait for a Friday evening. A few minutes into the wait, I looked up to the girl.  Standing about 15 yards away, amidst several strangers, she took my picture with her phone.

Over and over again, people say, "you have to pick your battles." As I get older, I pick fewer and fewer of them. I think, and hope, it's more productive to engage in broader outreach activities rather than confronting individuals who may know no better. Also, harassment, whether it be misinterpreted or genuine, doesn't bother me as much anymore. It's easier to write off someone as biased or prejudiced than to be weighted down by the behavior of others.

But two days ago, I was bothered by what happened. Stares are one things. Pictures are another.  But the dwarfophobic moments are hard to take.  Nevertheless, confrontation on a Friday night in River North is never a good idea.  

The Challenges of Awareness Months

Barbara Brotman published a column in the Chicago Tribune on October 6 titled, "Why some women with breast cancer dread October."  From professional football players wearing pink cleats, to billboards with pink ribbons, October is dominated by marketing around Breast Cancer Awareness Month.  With the marketing come stories about women who have battled through and survived cancer, and individuals pitching for more support of research in order to find a cure for breast cancer. In her column, Brotman wrote about women with metastatic breast cancer -- "cancer that has spread and is incurable."  For many of these individuals, the message Breast Cancer Awareness Month, a message of triumph and overcoming, doesn't resonate.  Brotman quoted a woman with metastatic cancer in her piece.  The woman said, "I'm happy, of course, for people who are doing well and have finished treatment, but I don't feel like I'm a part of that."

Though breast cancer awareness is by far the most well-known cause, other campaigns use October as a month to raise awareness.  Also, similar to women with incurable cancer, other pockets of people wince during October when the communities they are a part of trumpet awareness.  This includes Dwarfism Awareness Month. Dwarfism Awareness Month is much different than Breast Cancer Awareness Month.  When the ubiquitous pink throughout October represent the search for a cure, the green bracelets of Dwarfism Awareness Month have nothing to do with a cure.  Dwarfism Awareness is all about sending a message that people with dwarfism have lives just like every body else.  As such, people of short stature should not be treated as curiousities or the subject of study, but should be given the space and opportunity to live life like everybody else.

Little People of America launched Dwarfism Awareness Month in 2009. I served as Vice President of Public Relations for LPA at the time.  Soon after LPA kicked off Dwarfism Awareness Month for the first time, I received an email from a woman who wrote that Billy Barty, the founder of LPA, would turn over in his grave at the thought of Dwarfism Awareness Month.  Last year, I saw a Facebook post from a woman with dwarfism, who intimated that with October approaching, it was time to crawl under a rock and hide for a month.  I don't know what either of the people were thinking, but I assume they thought that people with dwarfism already receive a lot of attention, often unasked for attention, why dedicate an entire month to drawing more attention to ourselves?

This year, before the calendar hit October 10, I read more posts on Facebook from people frustrated with Dwarfism Awareness Month.  They seemed to agree in theory with the intent behind the campaign, but felt that too many people used the campaign to send the wrong message. They were concerned that messages were shared that framed people with dwarfism as cute and heroic, and that embellished the cliche, "they may be small, but they have hearts as big as anyone in the room." Though well intended these messages reinforce the gap between people with dwarfism and the rest of the community, and fail to convey that most people with dwarfism just want to live regular lives.  After all, no one with a jumbo size heart, literal or figurative, can lead a regular life.

I agree that some messages sent during Dwarfism Awareness Month might send the wrong message. But LPA, and the dwarfism community, must continue promoting the campaign.   We must continue to show the broader community that people with dwarfism are proud of who we are as people with disabilities, and people of short stature, and to raise awareness about the barriers to opportunity and equality we face so that people in the broader community can be a part of the effort to confront those barriers.

Perspectives

At some point, my life became almost as much about the way I perceive things and the way others perceive me, than about what I do and what others do.  My first memory of this change is from the 90's.  I was at some kind of non-profit fundraising event at a theater in the neighborhood of Rogers Park in Chicago.  This guy on stage was telling a story about a community of people who lived near a famous river.  I think the river was the Ganges in India.  The river played a prominent role in the religious aspects and the practical aspects of the community's life.  Yet, the river was very polluted.  People bathed in the river and they dumped trash into the river.  The fact that the river was polluted was an insult to the spiritual and religious significance carried by the river.  This was a problem for the people who lived in the community.  To address the problem, they started to think about the river differently.  Rather than think of the river as polluted, and put the blame on the river, they thought of the people perpetrating the acts upon the river as polluters.  The onus was lifted from the river and put on the humans and animals that were polluting the river.  With this frame of reference, the river regained its spiritual significance. 

The second step in my change of thinking came when I started to work for a non-profit disability rights organization.  Early on, I was indoctrinated with a philosophy called the "social model."  The philosophy revolved around how one perceives disability. Unlike the medical model, which looks at disability through the lens of a condition that needs to be fixed or cured, the social model portrays disability as a natural part of the human condition that will someday impact everyone.  In order to create a community that is inclusive of people with disabilities, the also is not to fix the disability, but to fix the inaccessible aspects of the community.  I've worked at the same non-profit for nearly 14 years.  Even on a day to day basis, much of my job deals with sharing that social model philosophy with members of the at-large, non-disabled population. 

The philosophy has its critics, even within the disability community.  But the social model way of thinking has become ingrained in me to such an extent, it applies to me not only while I am at work, but all the time.  I am also thinking not about what happens, but about how to frame what happens.  For example, 2012 was a great year for me.  I accomplished many things of which I am proud.  But when I think of the most significant highlights for me in 2012, nothing I did stands out.  What stands out is Peter Dinklage winning the Golden Globe and Andrew Solomon writing Far From the Tree.  Those events are more significant because they had a more intense impact on how I perceive myself as a person with dwarfism, and how other people will perceive individuals with dwarfism. 

I was reminded of the importance of perspective earlier this week when a friend of mine shared a video called "This is Water."  The video is framed through a speech given by David Foster Wallace at the Kenyon College Graduation Ceremony in May of 2005.  He frames the speech on the premise that most of us operate in a default mode.  In the default mode, each of us as an individual is the center of the universe.  As the center of the universe, every road block we encounter is an inconvenience, an insult, a waste of our time.  He argues that if we always look at the world through the default mode, it's going to wear us down, exasperate us, depress us.  He says we have to step out of the default mode and look at things from a perspective outside of our own.  Doing so, we will be more compassionate.  We will be more empathetic. 

Some people may think the video and the speech hogwash.  They may roll their eyes and mutter, "whatever."  That response is fair enough.  But to me, the video is very important.  It reminds me that I need to look at what happens to me from multiple perspectives.  As a person with dwarfism, this is particularly critical.  I, along with many other people, have to deal with a lot of unnecessary stuff sometimes.  How to frame the unnecessary stuff makes all the difference.  It helps me realize that my dwarfism is not the problem.  And it helps me realize that the perpetrators of the "unnecessary stuff" may be sympathetic.  I don't want to justify mistreatment of people with dwarfism, or the mistreatment of anybody.  But sometimes it's helpful to try to understand why they do what they do.

 Sadly, David Foster Wallace died by suicide in 2008.  I always been familiar with his name, but have never read anything of his. Even if I never read anything of his, I am thankful for his effort to reinforce the message of perspective.

Comfort Zones

Earlier this week, I attended a community forum on images of women with disabilities in the media. Speaking about the lack of representation of women with disabilities in popular culture and media, one panelist said, 'People just need to get comfortable with disability.' She wasn't referring to people with disabilities embracing their own disability. She was speaking of the general population getting used to people with disabilities in the mainstream. According to the panelist, existing discomfort explains why disability, particularly women with disabilities, is poorly represented in media.

There are good examples that indicate the general population is indeed uncomfortable with disabilities. A few years ago, a woman named Cerrie Burnell began appearing as a presenter on Cbeebies, a television channel for children produced by the British Broadcasting Service. Burnell is a young woman with a disability. Her right arm did not develop typically. It extends just beyond the elbow. Soon after she began appearing on Cbeebies, the network began receiving complaints, primarily from parents of children who watch the show. According the complaints, a "one-armed" presenter was scaring the young viewers. Clearly, the parents were not comfortable with disability.

Also, the Muscular Dystrophy Association recently announced that Jerry Lewis would no longer be hosting the annual MDA Telethon. This announcement has generated a response from individual disability advocates, some of who are founders of a group called "Jerry's Orphans." Advocates founded Jerry's Orphans in response to a concern that MDA Telethons were just as good as perpetuating disability stigma as they were at raising money. Many in the disability community feel the telethons reinforce images of people with disabilities as objects of pity, who are helpless, and in need of charity. This stigma is no different from physical inaccessibility at creating barriers to inclusion and opportunity. In response to the recent announcement from the MDA, disability advocates have spoken out, saying that this is an opportunity for the telethon to change it's model from one rooted in pity and cures. In a column published in the Columbus Dispatch, disability advocate Deborah Kendrick wrote, "What plans MDA has for the tone of this year’s telethon remains to be seen. My guess is that without Jerry Lewis, they'll still raise money, and they'll probably do it with a bit more dignity." Kendrick is a kindred spirit of Jerry's Orphans, and made it clear in the column. The column generated some vicious, almost violent feedback from readers. In an online email exchange about the column and the feedback, Mike Ervin, a disability community member in Chicago and one of the original Jerry's Orphans, commented. Mike is a veteran of hundreds of protests, including blocking buses and barricading office building. But in the email conversation, Mike said protests against the MDA Telethons were the only time he ever felt scared at demonstrations. According to Mike, discomfort fed the fear. He wrote something to the affect of 'people at the telethons are not comfortable when we step out of the 'pity' model.'

The recent discussions on the idea of the general population becoming comfortable with disability made me start thinking of dwarfism. It made me think of the relationship between the image of people with dwarfism in the media as just regular people and the extent to which the every day person is comfortable with a dwarf as just an every day person in the community going about his or her business. As I have written several, in not many, times within this blog, I think progress is being made, partly because there many more images today in popular culture of people of short stature framed as just regular people. Granted, some people believe the motivation behind the wealth of images is rooted in exploitation, but nevertheless, the dwarfs who are appearing in the media are doing the things that a member of the general population would be doing, i.e. going to school, working, raising kids, etc... The more we are presented as members of the general population, the more "comfortable" non-dwarf members of the population will become.

That all being said, we are definitely not in the proper 'comfort zone' at this point. If a man driving his car through downtown Chicago were comfortable with dwarfs participating in the general population, he would not need to take a picture. I should have known what was up when the car stopped at the light two car lengths behind the crosswalk when there were no cars in front of his. I was to the car's left, waiting at the light on my bike to make a left hand turn. When the light turned, I started peddling across the intersection. The car passed on my right, and it was obvious what the man was doing with his quote unquote smart phone.

A step in the wrong direction, yes. But nothing compared to some recent positive news reports......

two steps back

Nearly a week ago, President Obama appeared on “The Tonight Show.” Personally, I would have preferred he appear on “The Late Show with David Letterman,” but he could have done worse than Leno. He could have appeared with Jimmy Kimmel, infamous for making fun of little people. Whatever the program, unlike some critics who called his participation unpresidential, I was pleased with his decision to appear on Leno. At least, until the next morning.

I didn’t watch Obama on Leno, but I soon learned that his appearance unhinged the confidence he had built with the nation’s disability community. Joking with Leno about his skills as a bowler, the President used people with intellectual disabilities as a punchline when he compared his ten pin prowess to competing in the Special Olympics.

Though the President quickly apologized to Tim Shriver of the Special Olympics, the apology didn’t quell the furious debate that followed within and without the disability community. If the President’s comment had been an oversight, a poor choice of words at the wrong time, perhaps the apology would have closed the books on the issue.

When Obama wanted to make a point that he was a really bad bowler, the best way he could illustrate that was a joke about the Special Olympics. Obama’s mistake was a reflection of the negative images that still dominate disability in this country. The negative images are rooted in prejudice that comes from generations of exclusion, isolation, segregation and discrimination. To address the prejudice will take, not an apology, but a major policy shift and systems change. It will take a dramatic effort to include the voice and concerns of disability in all levels of government. Through his campaign comments, through policy statements, and through appointments he has made, President Obama has hinted that a major shift could become a reality under his administration. In fact, just before his appearance on Leno, at a town hall meeting in Los Angeles, Obama illustrated that hope, answering a question on disability not in the traditional “special needs” manner, but with language of inclusion, integration, and participation. But to this point progress has been little more that words and policy statements. That is why Obama’s appearance on “The Tonight Show” was so devastating. It forced those who believe that change might be a reality to ask themselves, “What, if anything, has changed? What, if anything, will change?”