Saturday, November 30, 2013

Fear on Family Feud

Chances are, everyone of a certain age is familiar with Family Feud, a game show that premiered back in 1976.  Two families compete against each other for money by answering survey questions. The original show was hosted by Richard Dawson.  Since 1976, the show has been cancelled a few times, in 1985 and 1993 but it was revived each time. The current show is hosted by the comedian Steve Harvey.

I enjoy trivia but I always had a problem with the show because of the system of scoring.  Typically, the two families would play three rounds before two members of the winning team went into a final "Fast Money" round.  When I watched the show, the third round earned triple points. With triple points, a family could lose the first two rounds, but still win the game in the third round because of the triple points.  It seemed to me, whichever team won the third round would win.  It didn't make sense to even play the first two rounds.  I haven't watched the game in a long time, so perhaps the format and the scoring has changed.  I hadn't thought about the game until last Monday.  A friend of mine sent a text that said, "Have you heard about tonight's Family Feud episode yet?" I hadn't heard anything, but later I saw a Facebook Post from my friend's wife.  Evidently, friends of hers were on the show that night.  My friend and his wife are both little people.  She, along with many others, had received a message from her friends, announcing that they were scheduled to be on Family Feud on November 25.  So that night, my friend's wife, along with many others who probably don't typically watch the show, tuned in.  In the "Fast Money" round, one of the questions was, "What is a toddler most afraid of at a circus?"  The second person to play in the "Fast Money" round answered, "A midget."  My friend's wife ended her email post with, "I had to try to explain to my seven-year-old why I changed the channel."  

I didn't see the show on November 25.  I haven't been able to find a clip of that segment on the internet.  But I would guess that the contest who answered "midget," didn't do so because the contestant thought it might be the right answer.  The contestant did so because no other answer came to mind, and "midget," while it might not earn any points, could generate a laugh. If that is true, it reinforces the idea that a so-called fear of little people is rooted in prejudice and ignorance.  People claim such a fear not because of any legitimate phobia but as a way to generate attention.  

It's bad enough that a contestant on Family Feud answered the question using the m-word.  It must have been many times worse for my friend, his wife, and his family to watch the show, especially considering that they knew the contestants. My question is, why did a contestant who announced a family of people of short stature use the word, and why didn't Family Feud edit that scene? 

Sunday, November 24, 2013

What Fear?

At work two weeks ago I dropped off a stack of papers at a personal assistant training.  Personal assistants are people who support people with disabilities.  They help out with day to day tasks like bathing, cooking, cleaning, and eating.   They are a key link to independence that allow many people with disabilities to live independently in their own homes.  Once a month, Access Living, where I work, holds a personal assistant training.  During a break in the training, one of the women at the training, who had seen me drop off the papers, announced to a few people around her, "I'm scared of midgets." I experience similar behavior on a somewhat basis, perhaps every other month someone on the train or on the street will act as if they have a fear of little people. As a person of short stature, it's never pleasant to encounter someone with a supposed fear, but at work it was unacceptable.  Access Living's mission is the inclusion of people with disabilities.  An alleged fear of little people is nothing but prejudice towards difference and is a blow against the mission.  People who announce their alleged fear do so because they think it's funny and cool.  It reminds me of people who say they are afraid of clowns.  The clown announcement never elicits a "Oh, I'm sorry, what are you doing to deal with it?"  Instead, people respond with an excited, "Oh my god, so am I!" as if it is hip to be afraid of clowns.

At work, I confronted the woman in the personal assistant training who announced her fear.  "Do you know where you are?" I asked her.  I don't remember what she said but she knew I was upset.  Miraculously, she somehow overcame her fear because she tried to give me a hug.  I told her to stay away from me and I left.  Later in the week, I told the Human Resources Department about what happened. I've worked at Access Living for 14 years.  I want it to be a safe space for me and for everyone who works there.  Though bad things will occasionally happen over the course of many years, and sometimes nothing can be done about them, I wanted to report what happened.  The Human Resource person was sympathetic and said if I gave him the woman's name he would make sure she didn't enter the pool of personal assistants who work with Access Living consumers.  I never gave him the name because it turns out the woman didn't come back to the second day of personal assistant training. 

Fast forward to earlier this week, and I get an email from In Touch, some sort of tabloid, asking Little People of America for a comment on a story about Lindsay Lohan.   According to the story, Lohan has Achondroplasiaphobia -- a fear of little people.  It is actually a listing on reference.com.  (The reference people should get together and agree on something because Ask.com calls it three different things: nanosophobia, Khuzdophobia,  and achondroplasiphobia) Though In Touch is a silly tabloid and though the alleged incident involving Lohan and little people happened seven years ago, I wanted to respond.  Again, it was clear that the issue, coming from the magazine and if it was true, from Lohan, was rooted in attention seeking and prejudice.  Little People of America sent a statement which indirectly called out the fear for what it is-- prejudice. 

“People with dwarfism are people with disabilities. Disability is one of the largest minority groups in the United States.  Lohan should treat her fear the same as she would a fear of any other protected minority population."  A piece suggesting a diversity training was added to the end also. 

People of short stature have to deal with a variety of issues.  Some of those issues concern attitudes and stigma.  In most cases, when we deal with them, we are able to go about our days and carry on soon after.  Though we've moved on from the Lohan phobia, and I've moved on from the woman at the personal assistant training, I think it's important that we confront people who claim to have little people fears. It's not a matter of helping them get over their fears, it's about calling them out on prejudice.  

With this in mind, it is ridiculous that reference.com has a listing for achondroplasiaphobia and actually treats the listing seriously.  They too should be called out.  


Thursday, October 31, 2013

Dwarfism Awareness Month V

Back in 2009, Little People of America launched Dwarfism Awareness Month to raise awareness about people of short stature and to confront stereotypes and stigma regarding dwarfism.  In the first few years, LPA as an organization and individuals within the community focused on legislative efforts, lobbying state politicians to issue proclamations in recognition of Dwarfism Awareness Month.



In 2012, LPA invested in a 15-second Public Service Announcement that ran in Times Square throughout the month of September.  Late in September of 2012, with a spotlight on the Public Service Announcement, LPA hosted a Dwarfism Awareness Month launch event in Times Squares.  Dozens of people attended a news conference and reception, and several different dwarfism organizations co-sponsored the event.

Over the past few years, Dwarfism Awareness Month has taken on a life of its own.  Media stories in Australia and England about people of short stature identify October as Dwarfism Awareness Month. This year, Mexico launched a campaign to celebrate October 25, the birthday of LPA Founder Billy Barty, as International Dwarfism Awareness Day.  Groups around the world, including Iran, joined the effort.  This year LPA didn't host a signature event or focus on a particular advocacy effort.  Dwarfism awareness means different things for different people.  With that in mind, the organization
encouraged and supported the efforts of individual members. I tried to do my part by running in the Madison Mud Run, a 5K race in a small town just south of Madison.  My wife ran with me.  She has always wanted to compete in a mud run. The course went over a variety of obstacles, including two streams, a big wooden wall, a water slide, and a wide mud pit filled with icy water.  Using the 5K as a vehicle, I raised more than $500 for Little People of America and also helped raise some awareness about the dwarfism community. 
Crossing a stream at the Madison Mud Run

Though the Mud Run was the focus of my Dwarfism Awareness Month efforts, one other moment in the past week stood out in my mind as signature dwarfism awareness moment.  For a person of short stature, everyday is full of moments that reflect dwarfism awareness.  Sometimes we use the moments constructively. Sometimes we let them go.  Sometimes our efforts to construct backfire in our faces.



 The moment happened Friday, October 25.  I stopped by a rental agency in my neighborhood to pick up a car for the weekend.  My wife and I were going to drive up to Madison for the District Six Regional of Little People of America.  I always stress out just before I pick up a rental car.  I love to drive, but I don't own a car so every time Katie and I leave town I need to rent a vehicle.  The problem is that my pedal extenders don't fit all cars.  The newer, more modern cars have gas pedals with a convex rear surface.  My extenders slip right off of the pedal.  I used to go out of my way, taking a train 20 minutes north of where I live, to a rental agency that would reserve a certain car for me, a car that I knew worked.  But my contact at that agency moved on so I started renting from the local neighborhood agency.  I've probably rented there 10 times over the past three years.  Though sometimes I've had to try more than one car, and once it took me more than an hour to install the extenders, each time I've been able to drive away with a car. Nevertheless, each time I stress out. 

Last Friday, I arrived at the Budget Rent a Car around 3:30 p.m. The office was empty.  No one else was waiting in line to pick up or return a car.  The man behind the desk had seen me before.  I had rented from him at least two other times.  When he saw me enter the office, he didn't ask me to check in.  "Follow me," he said, and he led me back to the garage.  In the garage, he indicated a row a cars and told me to find one that works.  Each car was unlocked.  While the rental agent went back to the office I examined three different cars, checking the gas pedal for one that would work with my extenders.

For me, that's what dwarfism awareness is all about.  People of short stature are really not much different from anyone else.  We want what other people want.  Sometimes though, in order to access what we want, we need supports of one kind or another.  For me, when I enter a rental agency just like everyone else, I want to leave with a car.  But in order for that to work, I need accommodations.  I need extenders and I need a car that works with the extenders.  The Budget Rent a Car in the South Loop of Chicago understood that.  And on October 25, as I drove away with a Toyota Corolla, that made me happy. 

Sunday, October 27, 2013

Individual or Group Identity

A week ago Wednesday, I was on my way home from work, walking from my train stop to my apartment.  About a block from where I live, I was ran into a man who sells weekly newspapers.  I often buy papers from him.  As I bought the paper on October 16, he told me he had seen my twin on the Ellen Degeneres Show.  I don't have a twin but I knew immediately what the newspaper vendor meant.  Within a week's time, Miley Cyrus performed "We Can't Stop" on both Saturday Night Live and on the Ellen Show

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In both cases she performed an acoustic version, accompanied by three guitar players.  One of the guitar players was Frankie Gieb, a person of short stature.  Though I told the newspaper vendor I don't have a twin and that Frankie and I, though we are both short statured, look nothing alike, I should have been honored.  The appearance of Frankie on Saturday Night Live and the Ellen Show was the type of representation in popular culture that so many people with dwarfism hope for.  He was integrated with two other average stature musicians and he was on stage to play music, nothing else.  Nothing gave the appearance that Frankie was recruited because of his dwarfism.  He just happened to have dwarfism.  The only part of the performance on Saturday Night Live that singled out Frankie more than the other two guitar players was when Cyrus gave him a high five after the song.  It was an exciting moment in terms of popular culture representation for the dwarfism community. 

Though it's impossible to find anything wrong with the Saturday Night Live Performance and the Ellen Performance, the difficult reality is that Gieb accompanying Cyrus on stage comes in the immediate wake of several little people appearing on stage with Cyrus as dancing bears at the Video Music Awards. Many people criticized the little people who played the bears, especially when that performance was juxtaposed against the performance of Gieb.  One person posted this on Facebook:

To my Dwarf Acting friends: I hope seeing Frankie on SNL this weekend can be a reminder that being a dwarf alone should not be justification for a career in entertainment. He has a skill that he artfully shared with his audience. It is not worth being a prop in someone else's low brow gag. Yeah the money is nice, but our dignity as a group isn't worth a couple hundred bucks.

Though the post doesn't specifically identify the people who played the baby bears or the band from the German Television Program (at least some of the same people were in each performance), a long dialogue followed in the comment section.  In the midst of that dialogue, a few of the dancers spoke out, defending their decision to take the role.

After the Gieb performance on Saturday Night Live and Ellen, and after the conflict ensued on Facebook, Little People of America reversed course.  Before, it had decided not to comment.  But with such a strong dialogue happening, the organization decided, even though it knew nothing good would come of it, to release a statement. Inspired by a statement made by Gloria Steinen about the Cyrus situation, and by some comments by members of Little People of America, the statement tried to make the point that all people of short stature, not just entertainers, have to be aware that our actions will be judged not just as reflections of who we are as individuals but as a reflection of the dwarfism community; the statement also said that rather than changing who we are as individuals, the goal is to change the culture that stigmatizes people with dwarfism.

Here is the statement:

Since day one, when well-known actor Billy Barty founded the organization, the portrayal of people of short stature in entertainment and popular culture has been an issue for Little People of America as an organization, and individual members of the dwarfism community.  Embedded within this issue is the concern that people with dwarfism have historically been dehumanized and objectified based upon their physical stature.  Though there are many examples of people with dwarfism in roles which put their talents, and not their physical stature, on display, in many cases people of short stature are still recruited as entertainment based upon stature.  Because of this, individuals with dwarfism who follow their passion into a career in acting and entertainment may be forced to make difficult decisions about what roles to accept.  Those decisions will impact not just themselves but the entire community of people with dwarfism. 

Most people who are average stature will never meet a person with dwarfism.  Because of this, all people with dwarfism, not just actors, have difficult decisions to make.  No matter if we are teachers, lawyers, waiters, or social workers, the people we meet for the first time and strangers who observe us may believe that what we do is reflective of an entire community or reflective of the stereotypes projected by popular culture.  Though we all face difficult decisions in our careers and throughout our lives, the primary role of Little People of America is not to judge the decisions people make but rather to raise awareness about dwarfism and to support the development of new opportunities so that in the future people with dwarfism will judged and recruited based upon their talents, not their physical stature.  

The statement was picked up by one media outlet, Refinery 29.  The story focused on this part of the statement:  

Because of this, individuals with dwarfism who follow their passion into a career in acting and entertainment may be forced to make difficult decisions about what roles to accept.  Those decisions will impact not just themselves but the entire community of people with dwarfism. 

Focusing on the two sentences above, the story made it appear as if LPA was critical of the people who played the dancing bears.  Criticism of the actors was not the intent of LPA, but until this point at least, it doesn't seem like anyone has picked up on the story and the discussion around Cyrus the performers with dwarfism has died down to some extent.


Saturday, October 19, 2013

Culture of silence?


Soon after her well publicized, analyzed, and criticized performance on the Video Music Awards, Miley Cyrus was broadcast on German Television, performing "We Can't Stop."  Cyrus appeared on stage with a back up band, all of whom were people of short stature.   Within a few days of the German Television Broadcast, a media outlet contacted Little People of America.  

 

The outlet asked if it was exploitative of Cyrus to perform with a group of dwarfs.  For a number of reasons, LPA chose not to comment.  For one thing, heavy criticism had already been leveled on Cyrus.  Much of the backlash criticized "the unconventional way in which she expressed her sexuality."  Some suggested the performance was,  and Cyrus is racist, "Miley Cyrus Brings Her Race Problem To The VMAs."   Others defended Cyrus' expression of sexuality, pointing out there is a double standard at play when Cyrus is a lightning rod of criticism while her partner on stage, Robin Thick, avoided the media and popular backlash.  In some ways, a case could be made that Cyrus exploited little people.  In the article, Miley Cyrus, Feminism and The Struggle for Black Recognition, Jacqui Germain, speaking of Cyrus, wrote, "When you feel the need to express your sexuality by turning my body into an accessory, the black feminist in me—two identities which I refuse to separate—can’t have your back anymore."  Many people in the dwarfism community believe that the dancing bears, little people in costume on stage with Cyrus at the Video Music Awards, were used as an accessory.  The media outlet that asked LPA for comment thought that LPA might believe the back up band for the German Television performance was used as an accessory.  The difference though between the dancing bears on the Video Music Awards, the black female dancers on the Awards Show, and the back up band is that the back up band showed their faces.  The appearance of the faces, and the appearance of the playing instruments, humanized the performance.  Of course, even with the supposed humanization, the intent of Cyrus still might have been that of a gimmick.  Based upon the embedded stigma in popular culture around the objectification of dwarfism, it is easy to believe that the intent was that of a gimmick.  But an assumption would need to be made.  Considering the circus around surrounding Cyrus at the time, making an assumption would not have been productive and probably would not have led to anything production for LPA or the dwarfism community.  

In addition, even if it was clear that Cyrus used little people as a gimmick, criticism leveled at Cyrus would have been shared with the dwarf performers.  Traditionally, LPA doesn't criticize the professional decisions of members of the dwarfism community.  This stance frustrates many members who believe that individuals who perpetuate stigma should be held accountable.  Nevertheless, criticism is often very subjective.  As soon as one portrayal in popular culture is criticized, it would be difficult to maintain a clear line between what is positive and what perpetuates the stigma.  Similarly, all members of the community, not just performers, have the potential to perpetuate stigma.  If LPA were not (note made on October 27-- the "not" should be deleted. It's a mistake to include here) to police, or comment upon, performers, it would be compelled to do the same for professionals outside of the performance industry.  

While LPA was hesitant to respond to the request for comment, the media outlet soon found a person who would comment.  She was quick to be critical of the dwarf performers, and also was critical of LPA for not commenting, asserting that the organization contributed to a "culture of silence." 


Saturday, September 28, 2013

Medicine and the reinforcement of stigma

On Thursday, September 26, Access Living, the organization where I work, hosted a Town Hall Meeting on Stigma and Mental Health. I was excited, though hesitant to attend the entire event because with a keynote speaker, a panel, and questions and answers, it was scheduled to run for two and a half hours.  I have trouble watching sports for two and a half hours, let alone listening to people talk. Besides, my desk is just one floor below where the event was held.  I had plenty of work to do.  It would have been easy to duck out in the middle of the Town Hall.  I ended up attending the entire event.  Here is coverage of the Town Hall from Progress Illinois

Though I don't have a mental illness, the information shared by the keynote speaker, Professor Patrick Corrigan, and the panelists, struck me personally.  Each of them, Corrigan and the panelists, identified as people with mental illness.  They all spoke about stigma impacting people with mental illness.  Corrigan approached the subject primarily from an academic perspective.  Sometimes the panelists weaved in an professional perspective, but each of them shared personal stories around navigating mental illness, and the barriers and social roadblocks associated with it.  Stigma is something that people with dwarfism deal with everyday.  Though the dwarfism diagnosis is not related to a mental illness diagnosis, I had a lot to learn from the information shared by Corrigan and the panelists.  Corrigan spent some time talking about medicine, and research.  He made the point that channeling resources into medicine and medical research increases the stigma for people with mental illness.  It sends a message that there is something wrong with people with mental illness.  It sends the message that they need to fixed.  Those messages reinforce the gap between people with and without mental health issues.  Within that gap, the stereotype of people with mental illness as not normal and dangerous is reinforced, and stigma grows. 

Corrigan's point about medicine resonated deeply.  Drug therapies that treat dwarfism began to appear in the news a few years ago.  Nothing much had been written about them for a while, but within the last week or so, stories have appeared about new research in France.  The research involves a drug that has been tested on mice.  If newborn children with dwarfism experience the same results as the mice in the experiments, then researchers believe that newborns with dwarfism may grow to a typical height and may not experience some of the impairments often connected to dwarfism, such as stenosis and sleep apnea. In the media, this research has been reported on as a cure for dwarfism. Healthline News ran the story A Decoy Protein Could Cure Dwarfism.  A story from Invest in Cote d' Azur ran with the headline Nice researcher Elvire Gouze offers renewed hope for the treatment of dwarfism.

It's difficult to navigate a response to news about treatment for dwarfism. On the one hand, stenosis can be a serious issue that may limit the mobility of a person with dwarfism and may cause suffering in terms of pain.  Yet, the news stories about the research in France are not framed as increasing the quality of life for a person with dwarfism.  They are framed as curing dwarfism.  The fact that the word cure is used in the media headlines and in the stories indicates that there is already tremendous stigma around dwarfism.  It suggests that there is already a common belief within mainstream culture that people with dwarfism are not well, are not equal, and are not normal.  The stories about the research reinforce those beliefs. 

The existing stigma, and the emerging research, puts a group like Little People of America in a tough position.  Regarding the new dwarfism "treatments," the organization decided to be a conduit for information.  Without endorsing the drug companies or partnering with them, the organization decided to share information about the research and issued a position statement which said that any individual that undergoes the new treatment, and any family that decides to pursue treatment, would always be welcome with Little People of America.  Even this indirect link to the drug companies connected to the new treatments has allegedly angered some members.  This anger comes from an indirect link that LPA has made between dwarfism and a cure.  Some people believe that the organization has reinforced the belief that there is something wrong with dwarfism. 

It's hard to know how to respond to such a situation.  For now, I believe that sharing information is the right thing to do.  Perhaps that will change down the road.  But one thing seems clear, no matter where someone falls on this issue, either voluntarily or involuntarily, everyone will suffer a little tarnish.  After all, even Warwick Davis and Peter Dinklage are unscathed.  As far as I know, neither has anything to do with the issue, but a picture of Dinklage ran with the story in Healthline News and a smiling Davis was a thumbnail on the internet for this story from the Medical Daily.


 


 

Sunday, September 15, 2013

Not so entertaining -- two high profile attacks on people with dwarfism in the past two years

Peter Dinklage at the 2012 Golden Globes
In early 2012, Martin Henderson became a familiar name within the dwarfism community.  Henderson is a dwarf who lives in England.  In October 2011, while smoking a cigarette outside of a pub, Henderson was picked up and thrown.  The incident injured Henderson, perhaps permanently.  The perpetrators in the incident were members of the English National Rugby Team, one of whom, Mike Tindall, had recently married into the English Royal Family.  Several weeks before the attack on Henderson, the English Team had been in New Zealand to play in the Rugby World Cup.  While there, members of the team were seen at a bar called Altitude in Queenstown, New Zealand, which at the time was hosting a "Mad Midget Weekend."  According to the media, team members were also seen at a dwarf tossing event during the Rugby World Cup.  Peter Dinklage, the "Game of Thrones" star who has shown the world that people of short stature are dwarfs but are not defined by their dwarfism, brought international attention to the attack when he mentioned Henderson's name during Dinklage's Golden Globe acceptance speech.  Toward the end of his talk, without going in details of the dwarf tossing attack, Dinklage said the name Henderson, then suggested to the audience, "Google him."  Evidently, millions did.  Martin Henderson was soon trending on Twitter.  More importantly, millions were able to make the connection between entertainment that uses dwarfs as props because of their physical difference and threats to the broader dwarfism community.  The injuries Henderson suffered are evidence that impact of events such as dwarf tossing are not isolated to the people who choose to participate in them.  Unfortunately, when dwarfs are used as objects of entertainment, an indirect message is sent to the broader community that it is acceptable to treat all dwarfs all objects of entertainment.  Of course, the vast majority of people understand that it is unacceptable to treat a person with dwarfism differently because of his or her stature.  But strong evidence points to the fact that Henderson was assaulted because of a dwarf tossing event that happened half way around the world. 

Andrew Demetriou of the AFL
Recently, reports of a similar incident appeared in the media.  This time, dwarf tossing was not involved, and a random dwarf was not picked up and thrown.  In this case, a dwarf was lit on fire, and the victim had been hired as "dwarf entertainment."  But just like the Henderson case, the victim did not consent to the violence perpetrated against him, the victim was a dwarf, and a strong case can be made that the perpetrator targeted the victim because he was a dwarf.  In the more recent incident, the Australian Football League Team St. Kilda's were celebrating what is called "Mad Monday."  As part of the celebration, the team hired a dwarf entertainer who went by the name "Mr Big."  At some point during the party, a St. Kilda's player took a lighter a set Mr. Big on fire, against his will. The attack hasn't generated the same attention as the attack against Martin Henderson, but the assault has earned some media coverage.  The coverage reveals that the leader of the football league that St. Kilda's is a part of didn't take the attack seriously.  Evidently, when he first learned about what happened, the head of the Australian Football League, Andrew Demetriou, laughed out loud.

On the plus side, some of the media coverage of the more recent event has been positive.  In a column for a media outlet called The Telegraph, out of Sydney, Australia, a reporter named Claire Harvey wrote,

"The media - and I'm not excluding publications in our own stable - made it worse by repeatedly referring to Jones' victim as ''a dwarf' in copy and broadcasts. Headlines made 'Seven Dwarves' allusions . . . Actually, Gareth Johnston is a man. The fact he has dwarfism is irrelevant.
He is the victim of an appalling crime perpetrated because of his physical appearance."

I don't know anything about Claire Harvey, but I am glad the reporter made the claim that Mr. Big (Gareth Johnston) was singled out because of his physical appearance.  Harvey's claim about physical appearance gives validation to what most people of short stature know. Nearly all people with dwarfism can attest that we sometimes treated differently because of our physical stature.  What happened to Henderson and what happened to Johnston point out that we may also be vulnerable to physical harm simply because of our dwarfism. 

The question is, what can be done?  Unfortunately, there will always be people who view dwarfs as nothing more than entertainment, and some of them are willing to shell out money to pay for dwarf entertainment.  And, there will always be people of short stature who will play the part of dwarf entertainment.

Michelle Minnikin and her family
Though there will always be people willing to pay, and there will always be people ready to be paid, there may come a point when dwarf entertainment is no longer socially acceptable.  In my opinion, that's not the case in 2013.  Dwarf entertainment is still socially acceptable.  That's why the head of the Australian Football League was amused instead of outraged, and that's why "Midget Wrestling" still earns many dwarfs a paycheck, and that's why Paramount Pictures prominently features a dwarf tossing scene in the trailer of The Wolf of Wall Street, a Martin Scorsese Film due out in November.  If the day does come when public pressure overwhelms the life of dwarf entertainment, it will take more speeches like that of Dinklage, more media statements like that of Harvey's, and more public exposure to people with dwarfism who live standard, boring, run of the mill lives just like everyone else. Finally, it will take more people like Michelle Minnikin, the mother of three children, one of whom is a boy with dwarfism.  Her son will start school for the first time in January.  Minnikin took to the media after Demitriou's embarrassing response to the attack on Johnston.  In her column in the Herald Sun, Minnikin paints a picture of her son with dwarfism as a boy no different from other four year old boys.  He just happens to be different.  Because of the failure to others to deal with difference, he son will face obstacles in the future.  But with more efforts like that of Michelle Minnikin, those obstacles will be fewer in the future.  Kudos to her, and her family. 

Saturday, August 31, 2013

Perspectives -- The Ovitz Family, entertainment, and Auschwitz

In 1999, a filmmaker named Shahar Rozen produced Liebe Perla, a documentary about the Ovitiz's, seven brothers and sisters who are dwarfs that were experimented upon at Auschwitz.  The film follows the relationship between Hannelore Witkofski, a woman of short stature living in late 20th Century Germany, and Perla Ovitz, the only surviving member of the Ovitz family.  The film follows the ordeal of the Ovitz's, who managed to survive Auschwitz because they dwarfs, and subject to genetic experiments; and because they were musicians.  The story draws connections between Europe of the 1940's and Germany of the late 20th Century in terms of the way people with disabilities, and people who are different, are treated and ostracized. Between 2000 and 2002, I saw the documentary at least twice, including at the Little People of America Conference in Salt Lake City in 2002, where there was a screening and discussion.  Soon after the 2002 Conference, I wrote about the documentary for the LPA Today

  Earlier this year, the actor Warwick Davis hosted an episode of what appears to me to be a web-based program called "Perspectives."  The episode was called "Perspectives:  Warwick Davis:  The Seven Dwarfs of Auschwitz."  It was first released in March but just within the last week a Youtube upload of the documentary has been making the rounds on Facebook.  This short documentary also looks at the experience of the Ovitz Family.  The Rozen documentary made a connection between World War II Europe and modern day Germany.  Davis' film comes at the issue from the angle of entertainment.  As a young actor, Davis starred in Return of the Jedi and Willow.  More recently, he's been in the Harry Potter series and in the mockumentary "Life's Too Short." Within the dwarfism community, in the United States and in England where Davis lives, there has always been tension around dwarfs and entertainment because in popular culture dwarfs are often objectified, dehumanized, and portrayed as sight gags.  For a dwarf actor, I imagine it could be tricky to navigate the line between what some may believe is objectification and acting.  Early in the Perspectives documentary, Davis sets up the entertainment theme by talking about his career and looking at the career of the Ovitz's before they were captured by the Nazis and sent to the concentration camp.  Davis makes the case that the Ovitz's were musicians and entertainers, which transcended the immediate appeal the family may have had as little people.  In voice over, Davis says, "They weren't just entertainers because they were small. They were entertainers because they were good at what they did."  Reflecting on his own career, he explains, "I got started in acting because I was short, but I didn't rely on that."


The Perspectives documentary starts to sink in after the initial staging of the entertainment theme.  He visits the village in Hungary where the Ovitz's lived until the Germans invaded and shipped the Jewish residents to concentration camps, and he visit Auschwitz. Davis continues to give his own insight on historical signficance of the story and make connections to his own life, but he also steps back from the narrative, and allows historians who he visits and old footage of Perla Ovitz tell the story.  This is where the documentary picks up momentum.  Liebe Perla was very good, but I didn't get a sense of the Ovitz Family experience in the context of the horrors of World War II Death Camps.  As a viewer, it felt like a separate experience.  By linking in testimony from Auschwitz Historians, the Perspectives Documentary integrates the Ovitz story into the broader history of the concentration camp, which I think is important because it puts the history of the this specific group of dwarf into a common history with which most people are familiar. 

As the documentary nears the end, Davis loops back to the entertainment theme.  He tells the audience that 100 dwarfs were exterminated at Auschwitz, making the point that the fact that the Ovitz's were dwarfs wouldn't keep them alive forever.  The SS Doctor Josef Mengele experimented upon the seven Ovitz brothers and sister because their bodies were different.  For eugenic purposes, he pulled teeth, pulled hair, and pulled eyelashes in pursuit of the knowledge of what separated disabled bodies from non-disabled bodies. But the Ovitz's knew that the differences in their bodies may eventually not be enough to keep them alive.  So, the Ovitzs started to perform.  Their performances bought them enough time to survive until, eight months after they arrived in Auschwitz, the camp was liberated.  

For me, the most moving part of the documentary comes at the very end.  The emotional impact of the moment doesn't have much to do with my connection to Davis as a dwarf, or to the dwarfs in the Ovitz Family.  Rather, the impact is tied up in the ambiguity of the human soul moving on after being in a place where thousands of people were put to death; and the conflicted feeling toward a horrendous man who was responsible for human atrocities, yet allowed the Ovitz Family to live.  Expressing that ambiguity, Perla Ovitz says in an interview, "I should hate him, but he let us live."  Moments later she says, "the lips smile but the heart weeps."


Wednesday, August 28, 2013

Notify the media

I've set up two "Google News Alerts" on my computer.   One is for the word "dwarf" and one is for the word "midget."  The News Alerts allow me to track media stories that include the word "dwarf" and "midget."  Every morning, Google will send me two emails.  One email includes links to all news stories from the previous day that include the word dwarf and one for the word midget.  I originally set up the emails to stay on top of stories that may be relevant to my work as Vice President of Public Relations and as President for Little People of America.  For a while, I stopped opening the email that listed the "midget" stories. If the stories included in the email didn't involve a youth sports league of some kind, the story was either insulting or ridiculous.  Opening the emails every day became too much of a burden.  Recently though, I've started to look at the emails again.  A few stories that have popped up in the last week are indicative of both what is wrong with the word midget and what people of short stature are sometimes forced to encounter. Neither story represents a serious problem that plagues people with dwarfism from dawn til dusk, but both underscore why it's important to raise awareness around dwarfism and language.

The first story comes from the Telegraph, a news site in England.  Both the headline of the story,
"Sunderland 'midget' Emanuele Giaccherini shows he can use his head with goal at Southampton" and the story include the m-word.  In this piece, the manager of a soccer club uses the m-word as a slur to put-down one of the players. Speaking about his player, Emanuele Giaccherini, who had made some impressive plays on the pitch, the manager says, “That proves that football is strange. Even a midget can score a goal, because he is intelligent."  The player is question is evidently 5'6".  The quote indicates two things. First, it indicates that if an individual is small of stature, then there is a general assumption that the individual does not posses the same talents as taller individuals.  Second, the quote indicates that the word "midget" is thought of as derogatory.  Sometimes, people ask, "What's wrong with the word 'midget?'  It's just a word."  Every word is just a word.  But words carry value, and words carry power.  Midget carries the weight of dehumanization and insult.  That's why Little People of America works to raise awareness around it. 

The second story comes from the Eagle-Tribune out of Maryland.  The story covers what happened when a helicopter landed in the parking lot of a strip club in a town called Salisbury.  Evidently, last week (August 21), the police were called to investigate when the helicopter touched down.  The investigating officer reported back to headquarters that the helicopter had dropped off the exotic dancer Bridget Powers, also known as "Bridget the Midget." Powers is a dwarf.  Last week, the paper ran a story about the visit from Powers.  Evidently, the story was incorrect.  When Powers' agent informed the paper that she was not a passenger in the helicopter on August 21, the paper double checked its story.  It turns out that the investigating officer made up the part about Bridget Powers.  She had worked in Salisbury in the past but was not a passenger in the helicopter.  According to the paper, the mistake "stemmed from the result of the responding officer’s attempt at humor, since Powers has worked at Kitten’s in the past."  Kitten's is the name of the strip club.  In response to the mistake, the local police department issued a media statement.  The statement included this line, "We are in the process of changing the culture of the Salisbury Police Department and this will be used as learning experience in that process." 

The story out of the Eagle-Tribune is harmless, but it might also reflect the mindset of society as a whole around dwarfism.  To the investigating officer, Bridget the Midget was a joke. He mentioned her name because he thought it would be funny.  It's possible that if it were a different entertainer, not Bridget Powers, who had made an appearance at Kittens, the investigating officer would have done the same thing.  In that case, stature wouldn't have made any difference.  But based upon the history of people with dwarfism in entertainment, and based upon the fact that people with dwarfism are still used as punch lines, it's easy to assume that Power's stature was part of the motivation behind the officer's actions. 

Saturday, August 10, 2013

Games Changers

Men's Gold Medal Soccer Match
My wife and I sat in the first row in the center section of bleachers at Demartin Stadium on the Michigan State University Campus.  Hundreds of screaming fans sat to our left, to our right, and behind us, stomping their feet, waving flags, and blowing horns in support of the Women's Soccer Teams from the United States and from Great Britain.  In the match to determine the Gold Medal for the 2013 World Dwarf Games, the two teams were locked in a tie at the end of regulation and had just started a round of penalty kicks to determine the winner.  I don't know the stadium capacity, but the seats were packed, not just with hundreds of athletes and their families who had made the trip to East Lansing for the events, but with Michigan State students and local residents who had read about the championship match.  Sparty, the Michigan State Mascot, also made an appearance.  He was walking the sidelines, encouraging noise from the crowd and showing support for the two teams.  Just before one of the United States players lined up to take what could have been a game deciding kick, a young man who was a United States fan stood up in front of the right side of the bleachers, faced the fans sitting in front of him, and started to belt out the cords of The White Stripes' "Seven Nation Army."  Several years ago, "Seven Nation Army" replaced the musical theme of "The Empire" from the Star Wars Series as the refrain that marching bands would lock into just before a pivotal football or soccer play. I never understood why marching bands across the country, at sporting events across the country, would all play the same song at critical moments, but the power of the music soon moved inside of me. 

Sparty with some of the USA Junior Players
The World Dwarf Games are held every four years.  They hadn't been hosted by the United States since 1993.  And it was East Lansing that hosted the first organized athletic competition exclusively for people with dwarfism in 1985.  More than 400 athletes from 17 countries had registered to participate, a higher number than any previous World Games.  On paper, the 2013 World Dwarf Games were a history making event.  And for many, the event would be life changing.  But my wife and I were staying at the Holiday Inn Express, six miles away from the Athletes Village at Case Hall and from the main hotel, the Marriott.  Commuting to and from the campus for my events, I felt like a commuter student.  I loved the games and got to know my team mates but didn't become part of the athlete community.  But at the Gold Medal Women's Soccer Match of the 2013 World Dwarf Games, when the USA Fan started to inflect the White Stripes, the tone of the week changed for me.  For the first time, I felt the energy of the games on an emotional level.   I felt a part of something that was more significant than the Great Britain Soccer Team and the United States Soccer Team.  The energy flowing through the stadium had brought the international community together. 

Juniors Soccer Team after their Gold Medal Match
The teams that lost the soccer matches that night will feel the sting of the disappointments for a long time.  For some of the players, the pain may linger for four years until they have the opportunity to avenge the losses at the World Games in 2017.  But each player was part of an effort that brought the world together, something in itself worthy of a gold medal.

Thursday, August 8, 2013

Basketball Epiphanies

A life changing moment came as a 20-year-old when I attended a Little People of America National Conference.  I hadn't been to a national since I was nine years old.  Eleven years separated the two national conferences. In middle school, high school, and college, I had experienced the frustration of social rejection from women in whom I had been interested, and to some extent I always struggled to fit in and make friends with my male peers.  I believed that the National Little People of America Conference would be a different world.  I thought I'd be a different person.  I thought both women and men would gravitate toward me. But as a 20 year old, on my own at a National Conference in Dallas Texas, it took me one day to figure out that I was the same person around little people as I was around average stature people.  I was defined in both places not by my height but by my personality.  My shy, timid personality didn't change around other dwarfs, and it served me no better within the LPA social circuit than it had in high school and college. 

Though I was crushed to realize that dating within LPA would be just as much of a struggle as it had been during my teenage years, I was relieved to discover that dwarfism wasn't the end all and be all of who I am.  Other personal characteristics had a much stronger impact of defining who I was as a person. 

The realization wasn't nearly as significant, but an experience I had a few days ago reminded me of my epiphany as a 20-year-old.  Since Sunday, I've been in East Lansing, Michigan for the World Dwarf Games, an international competition that happens every four years.  Around 400 athletes from more than 15 countries are participating in the games.  I signed up for four sports -- soccer, basketball, ping pong and boccia.  Two days ago, I met my basketball team for the first time. The coaches, not knowing any of our abilities, immediately threw us into a three on three scrimmage.  After watching us for a few minutes, they stopped the scrimmage and assigned us positions.  I was assigned to play guard.  In Chicago, I've played a pick up basketball game with the same group of average stature people for more than 10 years.  We play every Saturday.  Because every other player has at least a foot on me, I always play guard.  Two days ago, practicing basketball with other little people, it was thrilling to realize that what is true for me in basketball among average stature players, is also true among players with dwarfism. 

USA Team 3 with a few friends, including Tom Izzo.
Unfortunately, my basketball skills, similar to my social skills as a young man, have never been very good.  My team lost both games it played yesterday.  But we had a lot of fun.

For more on the World Dwarf Games, check out this website and this BBC Blog Post from Simon Minty.

Sunday, July 28, 2013

Open for interpretation

Here I am with Andrew Solomon, author of Far From the Tree
Last weekend, at the Disability Pride Post Parade Celebration, as I was hanging out in the shade under a tent in Daley Plaza, a woman asked me, "What happened with Andrew Solomon?"  Solomon is the author of Far From the Tree, a book that multiple different disability and marginalized communities. In the book, Solomon identifies what he calls Horizontal Communities.  A horizontal community is a group that a person is born into, but no other member of the family is part of the community.  For example, I was born with dwarfism.  Since no other member of my family is a dwarf, we don't share a vertical or generational community connection.  To connect with other people in the community, I have to move outside of my family tree, or I have to move horizontally.  Solomon's book includes a chapter on dwarfism.  He interviews multiple people of short stature and their family members, some of whom I know.  In the chapter, dwarfs and their family members share struggles, but within the struggles that result from orthopedic issues and stigma related to difference, there is a strong sense of dwarf community that generates pride and empowerment.  Solomon gave the keynote address at the Awards Banquet at Little People of America's National Conference. 

At the parade celebration, a negative vibe bubbled through the woman's question about Solomon.  I didn't know what she meant by the question, but I had a sense she believed something bad happened regarding Solomon.   When I asked her to explain, she mentioned a few Facebook Posts.  Someone who had been in the audience during Solomon's address at LPA posted several comments during his speech. In one of the posts, she joked that the speech was so depressing she wanted to slit her wrists.  Another post compared listening Solomon's speech to watching Hotel Rwanda because both were depressing. 

After the woman at the parade explained the question, I remembered hearing about the posts on the night of the awards banquet. I didn't think much of the posts at the time, but was concerned to learn that the posts impacted people who had not been at the conference, and I worried that the posts might impact might impact many more people negatively. Such a vibe might prevent people from reading Solomon's book.

When I think deeply about it, I can understand how a person might be overwhelmed with the negative when reading Far From the Tree and listening to Solomon.  The book indeed deals with negative issues.  Not only does it address the many physical issues that people with dwarfism are forced to confront, it covers how many doctors respond when they diagnose dwarfism and how expectant parents sometimes are repelled by that diagnosis.  It's the focus on the medical and on the negative that I believe must inspire some disability groups to integrate the search for a cure into their missions and objectives.  Little People of America is not about research, and is not about cure.  With this in mind, Solomon's message might be interpreted that way. 

In my opinion, Solomon's true message is about the identity that emerges within individuals as result of confronting physical and social challenges.  It is that identity that strongly connects people with dwarfism, even if they are different on so many other levels.  It is that identity that brings people back to Little People of America National Conferences year after year.  It is that identity that inspires LPA embrace dwarf pride over dwarfism research.  That identity, far from negative, is full of power.  But what do I know.  I always thrived on depressing movies. I'd much sooner watch Ordinary People than Rudy


Sunday, July 21, 2013

2013 Pride Day

LPA at the 2013 Disability Pride Parade
Yesterday was the 2013 Disability Pride Parade. The first parade in Chicago stepped off nine years ago.  I missed the first parade, and I've missed at least one since then, but the parade is one of my favorite events of the year, in particular when Little People of America marches.  Yesterday, six of us from the Windy City Chapter of LPA marched.  We don't have a float and our group is always one of the smallest contingents in the parade.  Despite our numbers, I always feel empowered when marching with other members of Little People of America.  So often, as people of short stature, we are involuntarily on display.  We attract unwanted attention and are sometimes the unknowing subjects of photos and videos.  While marching with the parade, it's as if we regain some control.  Walking down the street, we display the pride we feel as members of the dwarfism community.  I am sure that while we march we get our pictures taken by strangers who happen to be on the street through which the parade passes.  And I am sure some of the people who took our photos yesterday captured our image with the same malice as those who take our picture when little people are just minding their own business.  But there is always a different feel to it on disability pride parade day. On random days throughout the year, the photos feel like a violation, as if the perpetrators have taken something from us.  On parade days, the photos are just a nuisance that don't compete with the strength of the community.  Also, I hope that strangers who see us marching as part of the parade learn something about the dwarfism community.  Amidst the other disability groups, we are part of a community that has a history of struggle, achievements, and civil rights.  Being a part of the larger disability community gives individuals with dwarfism definition.  So often, people with dwarfism are treated differently because strangers don't make a connection between dwarfism and humanity.  It is my hope that strangers who see us marching within the larger community are better able to make the linkage between dwarfism and humanity. 

Access Living in 2013 Parade
For most of the history of the parade in Chicago, the route has ended at Daley Plaza, where there is a post parade celebration.  The parade followed the Daley Plaza Route yesterday.  Toward the beginning of the program, the program MC, Kevin Irvine, talked about pride.  He said that many of us are born with disabilities, but pride is not something with which you are born.  Pride is something you have to learn.  Pride is something you have to practice.  The Disability Pride Parade is a chance to practice that pride.  Marching with LPA, much more so than marching with Access Living, or any other group, I have the chance to practice my pride.  It's an opportunity I cherish because it teaches my how I should feel about myself.  And that's a lesson I can apply throughout the year.

Sunday, July 14, 2013

10-25 -- International Dwarfism Day

The last post on this blog focused on Little People of Uganda, a support group for people with dwarfism in the East African Country where it appears clear that dwarfs face incredibly difficult changes, including death, sterilization, and imprisonment simply because of dwarfism.  Many other countries joined Uganda as International Attendees at the 2013 Little People of America Conference.  One country was Little People of Mexico.  Like Little People Uganda, the group from Mexico also presented at the LPA Board of Directors Meeting and at the General Assembly during the National Conference in Washington, D.C.  The presentations could not have been more different.  Annet of Little People Uganda delivered a matter of fact, business-like presentation, deliberately walking the audience through a series of slides about the atrocities that face people with dwarfism in Uganda, and the need for a support group to protect people with dwarfism. Containing her own emotion, Annet let the facts speak for themselves. On the other hand, Little People of Mexico led a presentation that had elements similar to a pep rally. The group leader, Jose, spoke about the organization of little people of Mexico then presented about a campaign to recognize October 25 as International Dwarfism Day.  At the end of his talk at the General Assembly, Jose urged on the crowd in the chant "10-25! 10-25! 10-25!."  The audience at the General Assembly chimed in, cheering as if at a sporting event. 

Little People of America and Little People Mexico
Though the Mexico and Uganda presentations were different, the goals of each group, and of Little People of America, are similar.  Each group, and all Little People groups around the world, need to invest efforts into raising awareness about dwarfism.  Doing so, all of us will work to increase opportunities in the mainstream for people with dwarfism and we will help reduce stigma against people with dwarfism. Little People Mexico's Campaign to identify an International Dwarfism awareness day is a great idea.  Not only will the campaign help raise awareness, it creates a vehicle for groups around the world to rally behind a similar goal and work together.  The group from Mexico picked 10-25 to honor Billy Barty. Barty, the founder of Little People of America, was born on October 25th. 

As president of Little People of America, I look forward to partnering with Little People Mexico on the International Dwarfism Awareness Day Campaign.  The campaign will help LPA build on our Dwarfism Awareness Month efforts, and it will help members here and abroad rally behind a common cause. 

Saturday, July 6, 2013

International Alliances

Every year Little People of America hosts a national conference.  But attendance goes far beyond the borders of the United States.  At the 2013 Conference in Washington D.C., which wrapped up just a few days ago, there were people in attendance from at least 18 different countries, and from every continent except for Antarctica.  There was a lot of anticipation around the international delegations. 

In my case, I was particularly excited about the visitors from Uganda. Annet Nakyeyune is the founder of Little People of Uganda.    Little People of Uganda (LPU) started in 2007.  Since then, the founders have built a membership of more than 1,000.  Within the past few years, LPU started to correspond with Little People of America in the United States.  Part of that correspondence included the sharing organizational newsletters.  A few of the stories from the LPU Newsletter point out the differences between life in Uganda for a person with dwarfism compared to life in the United States for a person with dwarfism.  Most dwarfs who live in the United States can share many anecdotes that highlight discrimination and stigma that people of short stature encounter.  Sometimes the stories involve employment discrimination -- dwarfs have shared stories about being refused an interview because of their short stature; there are other stories of dwarfs who were denied reasonable accommodations.  Other stories involve the social stigma of difference that appears when dwarfs elicit stares, gawks, or photographs simply when they are walking down the street.  This type of marginalization can take a heavy toll on someone's life, from impacting their ability to make a living to impacting their self-esteem.  Though little people in the United States face challenges, I find it hard to complain compared to the challenges I know of now through learning about Little People of Uganda.  One of the LPU Newsletters included a story about a young man with dwarfism who had his baby taken away from him and murdered for no other reason than dwarfism.

With the story of the young man who lost his baby firmly implanted in my mind, I was thrilled to learn that Annet and her daughter Love planned to attended the 2013 National Conference in Washington, D.C.  Annet and her daughter's attendance would be a great way to strengthen the bond between LPU and LPA.  I hoped that the relationship between the two groups would be the start of an international coalition that could be used to fight on behalf of the Human Rights of people with dwarfism around the world. 
Annet of LPU presenting at General Assembly

Annet came to the conference equipped with stories about Uganda, which she shared with the LPA Board of Directors and with the membership at the General Assembly on Monday morning, July 1.  At both meetings, Annet ran through a power point presentation about LPU and dwarfism in Uganda.  The presentation included horrific information, about babies murdered because of dwarfism, about children caged for years at a time because of dwarfism, and about women who were repeatedly raped because of their dwarfism.  The stories and the facts were unbearable, but Annet presented in professional, formal style, showing little emotion. I don't know what she was thinking, but it seemed to me that she had to detach from the material emotionally, otherwise it would have been too overwhelming. 

Katie (wearing necklace from Uganda) and Gary.
Historically, not many people attend LPA's General Assembly.  Maybe 100 or 150 people attended on July 1 in Washington, D.C. But word of Annet's presentation soon spread and members not in attendance began asking what they could do to support LPU.  Jewelry that Annet and Love sold to raise money for LPU quickly sold out. 

My hope is that attendees of the 2013 LPA National Conference build on the energy that Annet and Love generated by attending the event.  I hope that we can all work together to build a coalition that supports our respective organizations and that supports international initiatives that raise awareness about dwarfism and that protect the rights of people with dwarfism.  Working together, we could generate the support needed for the Ratification of the International Disability Treaty in the United States and for implementation of the treaty around the world.  Working together, we could follow up on the idea of Little People Mexico and have the United Nations recognize October 25 as International Dwarfism Awareness Day. 

Annet and Love made a huge commitment to travel to the United States for LPA's Conference. Scores of other international attendees made a similar commitment.  Around the world, all of us should work hard and work together to find ways to follow up on that commitment.  Doing so, we could make significant progress individually and as a community.

Friday, July 5, 2013

LPA visits Capitol Hill

two men of short stature standing outside Senate Office Door
Ethan Crough (right) and Gary Arnold of LPA 
From June 28 through July 4, 2013, more than 2,100 people with dwarfism, their family members and friends gathered in Washington, D.C. for the Annual Little People of America Conference.  In many ways, the 2013 Conference was similar to previous conferences.  Like every other year, a DJ spun records each night to which hundreds of people young and old danced.  There was an expo with many vendors who displayed products that support people with dwarfism.  There were three days of informative workshops, and more than a score of doctors traveled from around the country to provide free medical consultations.  Each of these is vital to the success of each conference. 

Unlike year's past, the 2013 Conference was held in Washington, D.C.  Washington presented an opportunity to schedule new programming, including a trip to Capitol Hill.  To take advantage of this opportunity, a handful of LPA Members met early in the morning on Friday, June 28, and caught a cab from the hotel to the seat of the Federal Government.  Our group included members from Florida, Indiana, Pennsylvania, and Illinois.  Between us, we scheduled seven visits with the offices of National Senators and U.S. Representatives.  We entered the meetings equipped with a Fact Sheet about Little People of America and a copy of LPA's Policy Agenda, which had been adopted by LPA's Board of Directors in April 2013.  The policy agenda was an exciting development for Little People of America.  With advocacy around the ban of dwarf tossing and with a handful of medical position statements, the organization certainly incorporates policy work, but to my knowledge the agenda adopted in April is the organization's first standing policy agenda.  The agenda incorporates an International Disability Rights Treaty, protections for people with pre-existing conditions, anti-bullying legislation, and a measure for the U.S. Department of Agriculture to stop using the word "midget" as a size classification for certain products.

For the most part, the group met with staff who were very supportive.  The day included visits to the offices of Senator Harkin of Iowa, Senator Durbin of Illinois, and Representative Davis of Illinois, all of whom are historically strong on disability rights issues, which by and large is the umbrella that the LPA agenda falls under.  During a visit to Senator Kirk's office (Illinois), I was told by his staff that the Senator had decided to support the International Disability Treaty.  Immediately following the visit, my voice and hands shook a little bit as a I called the Access Living office in Chicago to share the news.  For months, Access Living and other disability groups had been organizing a grassroots campaign to earn Kirk's support for the Treaty.  News of Kirk's support for the Treaty quickly spread over social media.

Olga, her family and Gary Arnold with Rep. Davis
The visits to Capitol Hill were about more than earning support for a policy agenda.  After all, most of the people we met with were already in support of most agenda items.  The visits were just as much about Little People of America introducing itself to the Federal Government and about Little People of America members growing comfortable with policy.

Indeed, by the end of the day, a few of us had grown comfortable with the process.  Olga is a member of Little People of America from Florida.  She is the mother of a ten-year-old person of short stature and two average stature children. The International Liaison for Spanish Speaking Countries, Olga brought her entire family along for the legislative visits.  Around 2:30 p.m., the group finished up the last of our scheduled visits.  We gathered near one of the exits of the Senate Hart Building and were preparing to go outside, catch a few cabs, and return to the hotel.  But before we had a chance to leave, Olga's face grimaced.  She looked to her right at the staff directory and then mentioned the name of Senator Rand Paul from Kentucky.  Paul is against the International Treaty and has spoken in the past against the Americans with Disabilities Act.  Olga knew that Paul was pro-life.  In Olga's mind, there was an inherent contradiction between supporting the rights of a child inside the womb, and not supporting the rights of a disabled child after he or she had been born.  Though we had not scheduled a visit with Paul's staff, Olga wanted to stop by his office.  For a few minutes we talked about what to do.  But it was clear, if we didn't stop by Paul's office, there would be a deep feeling of dissatisfaction.

A few minutes later, six of us stepped through Senator Paul's door.  Like most of the other Senators and Representatives that day, Senator Paul wasn't there, but Olga persuaded the person at the front desk to find a policy person on Paul's staff who could spend about ten minutes with our group.  We went down the hall to one of the Senator's conference rooms and sat down with a member of Paul's Foreign Policy staff.  Olga went to work.  She voiced her concern over the apparent contradiction in positions and explained why she supported the treaty.  Olga's husband chimed in, adding that the treaty also supported U.S. Veterans traveling abroad. The young staff person listened intently and nodded as they spoke.  Then he thumbed through a writing pad he carried, looking for notes he had made previously about the Treaty.  I tensed up in anticipation of what he might say, worried that we might not have a response.  But Olga, her family, and I, were ready.  Nothing the staffer said could stand up to intrinsic importance of the Human Rights of people with disabilities here in the United States and around the world. 

We finished the meeting and returned to the hotel full of energy that came from making the unexpected visit to Senator Paul's office. We knew that Paul would not change his vote as a result of the visit, but we were excited.  By simply making visits to offices on Capitol Hill we had accomplished what we set out to do. We introduced Little People of America to many offices. But within that modest goal, we pushed the envelop further by making unscheduled visits and putting the importance of our policy agenda on the same level as the organization. I look forward to more such visits in the future.

Friday, May 31, 2013

Friendly Fire - Disability magazine columnist criticizes woman's choice to select dwarf embryo

Last weekend, I visited New Jersey for the wedding of my wife's high school and college friend.  We stayed with my mother-in-law and father-in-law.  Just before leaving for the airport to return home from New Jersey, my mother-in-law gave my wife and me her copy of People & Families Magazine.  The magazine is a publication of the New Jersey Council on Developmental Disabilities. I have never read the magazine, and I don't keep up with what is happening in the disability field in New Jersey.  I find it difficult enough to keep up with disability issues in Illinois.  With that in mind, I don't know the politics of the New Jersey Council on Developmental Disabilities.  In the middle of the plane ride back to Chicago, my wife, who had been reading the magazine, turned to me, gave me a concerned look, and motioned toward a specific page in the magazine. 

The article was an Op-Ed by Norman Reim titled "The Debate Over Genetic Screening and Prenatal DNA Analysis."  The article examines recent evolutions within genetic technology and what that means for people with disabilities.  Discussing genetic engineering and DNA Analysis, the writer makes some broad points that are generally positive and that support informed choice (taking in a wealth of diverse information before making a decision regarding giving birth to a child with a disability) and disability inclusion.  For example, he writes, "We as a society need to be very cautious in opening up a vast area of governmental and even public opinion intrusion into the decisions a woman and her family make about having children....professionals, officials, and others with authority have had a poor record in predicting the quality of someone's life with a significant disability. (People & Families, p. 15, Spring 2013)"  I interpret this statement to say that rather than opening up choices and information, genetic screening and prenatal analysis actually limit choices.  This is because if a woman tests positive for a child with a disability, than there is an assumption that the child will be aborted.  According to an article from the USA Today, "Between 60% to 90% of women who receive a prenatal Down syndrome diagnosis end the pregnancy, according to a 2012 analysis of 24 studies in Prenatal Diagnosis."  Because the information available about disability is skewed toward the negative, when a diagnosis of disability is made, "You feel like the rug is pulled out from under you. You feel very heavy. You feel very, very alone. (With Down Syndrome Diagnosis Comes a Wrenching Choice, USA Today, May 1, 2013)."
 
Reim trips up later in the article, when writing about Preimplantation Genetic Diagnosis (PGD).  That's the section my wife was reading when she turned to me on the plane.  Through PGD, a woman may select an embryo to be implanted into her uterus.  In theory, the process could be used to weed out embryos that carry disability, and could be used to intentionally implant embryos that carry disability.  Several years ago, PGD caught the attention of Little People of America when a New York Times article reported that some PGD providers had "denied requests to use the process for selecting deafness and dwarfism,  (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)." In the article, a doctor who denied requests was quoted to say, "In general, one of the prime dictates of parenting is to make a better world for our children . . . Dwarfism and deafness are not the norm, (Wanting Babies Like Themselves, Some Parents Choose Genetic Defects, New York Times, December 5, 2006)."  While dwarfism is obviously not the norm, it is inaccurate and irresponsible to suggest that a child without dwarfism is in a better world than a child with dwarfism. In addition, refusing to implant an embryo with dwarfism has consequences that go beyond one embryo that is or is not implanted. The consequences negatively impact how society views and treats all people with dwarfism.

Around 2007, LPA adopted a position paper on PGD that endorsed choice.  Basically, the paper said that if the process of PGD is going to be made available, then people with dwarfism and others should have the freedom to choose how to use that process.  That means, using the process, a person could select either an embryo that carries disability or one that does not. If the Op-Ed in People & Families is any indication, Reim would disagree with the LPA Position Statement.  Talking about a couple who used PGD to implant a child who would be Deaf, and about a woman who used the process to give birth to a child with dwarfism, Reim writes "Cases such as these reflect arrogance and selfishness."  He then compares the choice to implant an embryo that carries disability with purposely disabling a child after he or she is born. Reim's position on PGD is disappointing and his comparison to disabling a child after birth is inaccurate.  His comparison is inaccurate because technology exists that allows someone to make a decision about an embryo, but no disabling after birth technology exists.  In fact, it could be argued that the opposite is true. In the world of dwarfism, technology is developing that may eliminate the disabling impairments that are associated with dwarfism.  If and when that technology developments further, a parent will have a choice as to whether or not to pursue the treatment.  The same principal of choice must be applied to PGD.  The parent, not the scientist or doctor, must decide what embryo to implant. 

We all have different opinions regarding quality of life.  Some of us, even some of us with disabilities, would not choose to give birth to a child with a disability.  Some of us would.  But we need to fight for the freedom to choose. Unfortunately, if we don't fight hard and advocate for the disability and dwarfism community, assumptions about the quality of life of people with disabilities will lead to the regulation of the use of genetic and medical technology.  That will take decisions out of the hands of parents.