Saturday, December 29, 2012

Politics threatens the homes of Russian orphans

I am a member of District Six in Little People of America.  The district includes Illinois and Wisconsin.  A few years ago, through LPA, I met a couple that lives in Wisconsin.  The couple is average stature.  They are a part of LPA because of their daughter, who is a dwarf and who is from Russia.  The couple had adopted her.  The first time or second time I met the couple, they told me the story behind the adoption.  According to the story they told me, the orphanage was very surprised that the couple was interested in a girl with dwarfism.  Officials from the orphanage said something like, "are you sure you want her?"  In other words, the orphanage meant, "are you sure you want to adopt a child with dwarfism?" 

But in addition to the girl from District Six of LPA, there is also Tatyana McFadden, a Gold Medal Paralympic Athlete.  She spent the first few years of her life in a Russian Orphanage before she was adopted and she moved to the United States.  In the United States, she trained to become a World Champion Athlete and her advocacy led to legislation that has opened up high school sports to athletes with disabilities. I am sure that there are examples of children in the United States who are put up for adoption simply because they have a disability. But so long as there are children in Russian Orphanages, or orphanages anywhere in the world, and there are adults who want the opportunity to give those children a good home and the chance at a good life, it would be a shame if deserving parents weren't given that opportunity.  That may be the case in Russia.  According to a story from The New York Times, Russian President Vladimer Putin just signed a bill that bans the adoption of Russian children by Americans. Evidently, the ban is retaliation against United States efforts to punish human rights abuses in Russia. 

Last year, 1,000 Russian children were adopted by US citizens.  When the bill goes into affect, it is sure to impact some would-be US parents now in the adoption process.  According to same New York Times article, there are around 120,000 children in Russia eligible for adoption.  There are bound to be good homes for those children, whether it be in Russia or in other countries.  But it is tragic to think that some of those children may suffer the loss of a good home because of politics between Russia and the United States. 


Friday, December 28, 2012

Radio City style evolution

I was Louie the Elf in the Chicago production of the Radio City Christmas Spectacular in 1997 and 1998.  Before a show in 1997, a few of the other elves and I were sitting in our dressing room as some of the dancers from the cast made their way to the stage. At most, the little people cast in the show were in three scenes.  A few of the little people were in just one scene, "Santa's Workshop."  Hence, the little people, myself included, spent a lot of time just sitting around waiting for our scenes.  That's what we were doing that day in 1997 when the dancers filed past our room.  One of them, looking in at us, said something like, "Don't forget to smile."  In a way, the comment was disparaging and disdainful.  While in order to be cast for the show, the dancers and Rockettes needed to be skilled performers, the little people didn't need much skill.  We just needed to be able to move around, and to smile.  That's not to say some of the little people in Radio City shows aren't talented.  Some are very talented.  Some have moved on to act in mainstream movies and theater.  But not much skill was needed to play Louie the Elf, or any of the other elves.  When the dancer made the comment, it was as if he resented us for having it relatively easy on the Radio City set.  If the dancer did have an issue with the elves, he wasn't the only one.  Others have disliked the role because they believe it objectified little people.  Considering we were cast simply because we were little people, there probably is some truth to that belief.

For many years, Little People of America had a working relationship with Radio City.  Radio City would recruit elves at the National Conference.  In 2009, because of concerns noted above (around objectification), the organizers of the national Little People of America Conference didn't invite Radio City back.  After the 2009 conference, Little People of America as an organization passed a resolution that would allow Radio City to return to the National Conference only if employment recruiters from at least three other industries (non entertainment industries) also participated in the conference.  To this point, that has not happened. 

Radio City still performs in Chicago.  For the past two months, once a week while I shop for groceries at the Jewel Food Store, I hear advertisements for the show blasted over the intercom system between songs.  Every time I hear the advertisement, I think of my two seasons with Radio City.  Unlike Peter Dinklage and his triumphs in show business, I made no constructive contribution to awareness around little people while I performed as Louie the Elf, though I did have a very good time. But if I were looking for that same good time today, I wouldn't be able to find it.  A few weeks ago, I found a review of the Radio City show in the Chicago Tribune.  To my surprise, the article indicated that elves are no longer part of the show (for whatever it's worth -- neither are live animals).  I am sure there is no connection between the fact that little people are no longer a part of the Chicago show, and that Little People of America hasn't hosted auditions since 2008.  After all, I am almost positive that the Radio City show in New York still casts elves.  And I am sure Radio City has resources besides LPA Conferences to recruit little people.  Nevertheless, Radio City must have made a conscious decision to no longer include little people in the Chicago show, and perhaps other shows.  For whatever reason the decision was made, I can't help but feel everyone involved, or not involved, is a bit better off with the revised Chicago show.  At least when it comes to the Rockettes, the critic for the Tribune seemed to think so, writing But, "in general, they are more dignified in the 2012 edition of this show than at any of the other 10 times or so I've seen them out there kicking."

Friday, November 30, 2012

Limb lengthening in the news

This week, the media covered a new non-fiction book written by a person of short stature.  The book, by Tiffanie Didonato, is called Dwarf:  A Memoir.  I haven't read the book.  From what I understand in the media, the book covers Didonato's experience with a series of limb lengthening surgeries.  The procedure carries some controversy within the dwarfism community.  For people with dwarfism, the common bond that unites us is our dwarfism, which in many ways is defined by our stature.  When people change their stature, it can be perceived that they are changing their identify.  In some ways though, stature is only a superficial way to define dwarfism.  As a culture, what unites us is not our size, but our experience as people with dwarfism.  People who undergo limb lengthening surgery, whether they gain a few inches or 10 inches, are still dwarfs and still share the dwarf experience.  That said, it can be difficult to process what it means when a person chooses to undergo a series of painful, time consuming surgeries in order to gain height and reach.   

More than six years ago, Little People of America published a position statement on limb lengthening surgery.  The statement is neutral and intended to be so.  Similar to the way the organization addresses many issues, LPA believes that any decision about limb lengthening should be well informed and should be made only with the proper supports.  Nevertheless, LPA is sometimes presented as anti-limb lengthening.  This either because pieces of the statement are taken out of context or a member of LPA misspeaks about the statement.  I may have been guilty of this several years back.  In 2008, well before the publication of her book, Didonato appeared on Good Morning America.  The story focused on her limb lengthening surgery.  The online version of the story included this quote from LPA (probably sent in by me (I was VP of PR at the time)), "Most members of the dwarf community believe that no child should undergo surgery unless it is for a treatable medical condition that will improve her or his health. Limb-lengthing surgery, by contrast, does not address any medical condition."  Though the spirit of the quote reflects LPA's official statement, and LPA does believe that limb lengthening is a cosmetic procedure, the quote does not come directly from the statement.  The statement by LPA is "not intended to either advocate for or condemn extended limb lengthening."  Nevertheless, it is understandable that, from the quote ABC published, people may believe that LPA is anti-limb lengthening.

In a blog post I published back in 2008, I wrote about the ABC segment.  I was unhappy, not because Didonato chose to undergo limb lengthening, but because the story celebrated a cosmetic fix without critically examining the social factors, and how to change those social barriers, that influenced the cosmetic fix.

Since the publication of Didonato's memoir, LPA's position on limb lengthening has again been presented as negative.  This post from a site called "The Gloss" says that LPA is "officially against it."  The site references an Associated Press article from 2004.  The AP article doesn't quote anyone or any statement, but says, "The advocacy group Little People of America has taken an official stand against it, warning of the risks of long-term nerve and vascular damage."  While LPA does warn of risks, its current official stand is not against limb-lengthening. 

If Didonato's memoir generates more media coverage, I hope LPA has a chance to explain more deeply its position on limb lengthening.  Explanation is important not just for the sake of the issue of limb lengthening.  Explanation is important because Little People of America is an organization for all people with dwarfism.  No matter the decisions a person makes, no matter the surgeries a person has or does not have, LPA needs to be there for individuals with dwarfism.  Paraphrasing a friend of mine from a conversation a few months ago, "LPA needs to be the place a person can always come back to." 

Sunday, November 25, 2012

Hockey and Football Leagues using the word midget

Of the many articles published this year about Dwarfism Awareness Month, one ran on a website called the West Island Chronicle.  The article included a short bit on use of the word "midget."  The writer wrote, "Also, for the record, the word 'midget' is a derogatory term..."  I found the piece interesting because the writer went to to say "... unless you are referring to the hockey or football age-grouping."

When searching the word "midget" on google news, the majority of hits come from stories about local hockey and football teams competing in midget divisions.  Such leagues exist all around the country.  Though the writer from the West Island Chronicle was correct, the word in this case is not derogatory or objectifying, use of the word in any context makes many people uncomfortable because of the word's legacy, so uncomfortable that some parents or relatives of dwarf children don't want to be associated with the league name. If I had children, I would not want my child, whether he or she be a dwarf or not, to be a part of the league.  What then is a parent or relative to do?  If he or she wants to play, is it fair to keep him or her out of the league because of a name?

A few parents that I know of are advocating for change.  A league near Seattle, Washington, because a coach spoke up, will eliminate use of the word midget in 2013 or 2014.  An Illinois-based league will also undergo a name change.  The change in Illinois came about because of a letter written by a concerned mother.  In both cases, change occured simply because one person expressed concern and asked that something be done. If there is concern elsewhere in the country, I hope those affected will share their concerns and ask that something be done.  Like in many things, it never hurts to ask.

The mother from Illinois has agreed to share her letter. It is reprinted below 


Good evening, 

I am a mother of 3 dwarf children who are residents here in Park Ridge. One of my daughters is on your "Midget" soccer league.  I personally find it extremely offensive to associate this word with one of your age groups. The kids and the coaches on my daughter's team know that she is a dwarf. The word "midget" is a derogatory word used towards a little person, just as calling a child or adult with cerebral palsy, retarded. My daughter knows that this word is used to make fun of people such as her, and to be quite honest with you, she is very upset with the name of the division that she falls into.  

In today's world, I am very surprised that, that word is used to associate 7 and 8 year old children for their division. We are proud active members of the Little People of America organization, and if it weren't for them fighting for the right to use the word dwarf, my children would be called midgets.
 

On behalf of my children and the other dwarfs out there that may/may not move into Park Ridge, that another name be chosen for this age group.







Wednesday, November 21, 2012

Lee Corso uses m-word on "College Game Day"



I love many sports, including football.  In particular, I love the Chicago Bears and Wisconsin Badgers.  Typically, I will make sure to carve out time on Saturdays and Sundays in order to watch the Badgers and Bears Games.  Yet, unless the Bears or Badgers win a game, in which case I will watch and read post game analysis, I have never been a fan of listening to people talk about sports.  On Saturday and Sunday mornings, instead of watching pregame shows, I scramble to clean my house and finish my work so that I don’t feel guilty watching three or more hours of sports. 

With this in mind, I have never watched ESPN’s “College Game Day,” a show on Saturday mornings that previews the upcoming day of college football.  But this past weekend, it didn’t take long for me to hear about something that happened on the November 17 episode of “College Game Day.”  Since the show’s inception, the program has featured a man named Lee Corso.  A former football player and coach, Corso was hired by ESPN in 1987.  According to Wikipedia, on the show, Corso plays the role of “comic foil” next to his various co-hosts.  His “catchphrase” is “not so fast, my friend,” which he delivers to disagree with a colleague’s prediction about what team will win a game.  (In what I think is an interesting footnote, he always holds a pencil when he makes the statement.  According to the same Wikipedia post, Corso is the Director of Business Development for a pencil based manufacturing company.) 

This past Saturday, Corso delivered his signature line with a twist.  Responding to a five-year-old football fan who predicted Yale would beat Harvard, Corso said, “not so fast, midget.”  A lot has been said by me, by Little People of America, and by the dwarfism community about the word midget.  When raising awareness about dwarfism, among other outcomes, Little People of America hopes that people will stop using the word midget.  Nevertheless, we recognize that we will not eliminate use of the word.  The question then becomes, how do LPA and the dwarfism community respond when the word is used. 

That question came up after Corso called the five year old a midget.  Soon after the comment was made, someone posted on LPA’s Facebook page, asking what people thought of Corso’s comment.  Someone also sent an email to LPA’s Vice President of Public Relations.  The author of the email made some good points.  He argued that a response was warranted because ESPN is a major mainstream network, and because many people who watch “College Game Day” will be influenced by what they hear. 

Typically, rather than respond to use of the m-word, LPA focuses on proactive outreach.  My philosophy is, it is better to invest energy into opening doors than to fight against people that are closing doors. I think that philosophy applies in the case of Corso.  Corso may or may not know the impact of the m-word within the dwarfism community.  Even if he did know, I don’t think that would have stopped him. (I don’t have anything to base that assumption on except for the fact that later in the telecast Corso strangled a live duck on the air.) After all, Corso plays the role of the comic foil.  His use of the m-word is no different than a comedian using the word for a cheap laugh. 

Corso’s comment did draw laughs, from his co-hosts and from his viewers. But from what I have found online, his viewers know that there is something wrong with what he said.  One writer commented, “I’d hate to be the person at ESPN that is in charge of responding to the hate mail from overly sensitive viewers that object to Lee Corso’s comments, (Lee Corso Calls Cute 5-Year Old A “Midget”).”  Another wrote, “Calling a kid a midget in front of millions of viewers probably wasn't the most "politically correct" thing for Corso to say, (Lee Corso calls kid picker a 'midget').”  My favorite response included this comment, “In protest of Corso’s use of the word “midget,” not to mention the fact that he just screamed at a little kid on television, I will not be posting video of whatever dumb thing he dressed up as today to make his pick of the week, (Lee Corso Calls 5-Year-Old “Midget” on College Gameday).” 

I didn’t like the first two comments.  One suggested that anyone who would have a problem with Corso’s use of the word is overly sensitive.  The other used the term “politically correct,” which in my opinion always diverts attention away from issues of respect, equality and language.  Though I didn’t like the first two comments, both recognized that what Corso said was wrong and inappropriate.  These comments provide evidence that more and more people are aware of issues and language related to dwarfism.  This evidence is motivation for LPA and others to continue to focus on raising awareness within the general public and not to devote time to spend time to people who use the word. 

People out there like Corso, who are just trying to get a laugh, will continue to say offensive, inappropriate things.  If we call them on it too often, we will just get into discussions about political correctness and the first amendment.  But eventually, if LPA and others continue to raise awareness about diversity and differences, people like Corso will lose their audience.  At the very least, the audience will stop laughing.


Sunday, October 28, 2012

Language impacts everyone

Sometimes, when talking about language, people of short stature connect use of the word midget to use of the n-word.  I've done this also, yet I qualify the comparison by explaining that use of the m-word stimulates the same visceral reaction among people of short stature that use of the n-word produces among the African-American community.  The problem with making this comparison is that it is easy for an audience of listeners to believe that the experience of people of short stature and the experience of African-Americans are being compared. This can create problems and can quickly turn an audience off from the point which is person is trying to make.  In my last post, I wrote about Bob Levine.  He wrote a letter in response to the Saturday Night Live's use of the m-word.  In his letter, he made the comparison.  He wrote, "The “M-word” should be considered as unacceptable as the “N-word.” Would you use the N word to describe black people, the S word for Hispanic people, the C or J words for Chinease or Japanese people, no."  Though he wasn't equating the experience of a person of short stature with the experience of an African-American, or a Latino, or an Asian.  Yet, he was attacked in the comment section of the website as if he were. 

The comparison between people of short stature and other marginalized groups can draw antagonistic response even within the dwarf community. Prior to Facebook and similar social media, there was an active dwarfism listserve on Yahoo.   Once, a discussion on the listserve that compared use of the m-word with use of the n-word drew the ire of an African American dwarf who was part of the discussion.  I can't quote what he said but the bottom line was that the African American thought it was inappropriate and insensitive to make the comparison.

Comparisons between dwarfs and other marginalized groups have their place. At least I think they do.  If I am speaking with someone unfamiliar with dwarfism, a comparison to something with which he or she is familiar is a way to draw empathy.  Yet, too many times the comparisons don't work.  For one reason or another, they draw attention away from the point that is trying to be made. 

The good news for people of short stature is that we don't need to use comparisons to other marginalized groups as strongly as we needed to in the past.  We still have far to go in terms of equality and equal treatment, but on the whole, society is more familiar with dwarfism than it was in the past.  With this in mind, the dwarf experience can stand alone.  We can speak about our on experience and use it alone as a justification for asking people not to use the m-word and for demanding a level playing field.

Friday, October 26, 2012

Don't tell me what to say

Kudos to Little People of America Lifetime Member Bob Levine. He recently approached Little People of America about a Saturday Night Live Skit he found offensive.  I don't know much about Saturday Night Live these days, but evidently the skit included a recurring character of cast member Bill Hader.  The character used the word "midget." This wasn't the first time the character had used the word.  In the past, I've heard from at least one other member about the character's use of the word.  In this case, Levine wondered if LPA would reach out to Saturday Night Live and ask the show to stop using the word.  For a number of reason's, LPA typically does not respond when the m-word is used in popular culture.  This is because the organization feels effort is better spent proactively raising positive awareness rather than reacting to negative language.  The hope is that positive awareness about dwarfism will eventually convince people to decide for themselves not to use the word.  Exceptions are made sometimes.  Last month, former Florida Governor Jeb Bush used the m-word on MSNBC.  Because Bush was a former elected official speaking on a news program, LPA sent him a letter.

In the case of Saturday Night Live, LPA decided not to respond.  Instead, we encouraged Levine to share his concerns directly with the show.  To Levine's credit, he wrote a letter and it was published on the RivertownsPatch website.  The letter was from the heart.  In the letter, Levine reflected about how SNL helped him through difficult times, as a young boy, and in high school.  Now, because of the show's use of the word, he is reconsidering whether or not to watch it again.  As is the case with most online news publications, Levine's piece was open for public comment.  And, as is the case with many online comment sections, the comments were primarily unsympathetic at best, and brutal at worst.  So much so, RivertownsPatch eventually shut down the comments.

Unfortunately, the comments that Levine's piece garnered are typical of any piece that calls for the end of a particular word.  No one wants to be told what he or she can or can't say.  That's another reason why LPA traditionally doesn't respond to negative use of language.  If we call on people to stop using language, then the issue quickly gravitates, fairly or not, toward political correctness and the 1st Amendment.  These are issues of which LPA doesn't want to be a part.  That's why we focus on raising awareness.  Rather than tell people what they can and can't say, we should give people the tools to make the decision for themselves. 

Nevertheless, I admire Levine's decision to write the letter.  I am glad he spoke his mind.  No matter the response from anonymous people who comment on internet websites, I hope others speak their minds in the future.

Sunday, September 30, 2012

Dwarfism Awareness Month Event -- Follow up



It is not like any thought that putting a lot of effort into Dwarfism Awareness Outreach would eliminate the need to do more dwarfism awareness outreach  But it can be a little discouraging when you are reminded about the critical need for awareness in the midst of, and very soon after, a fabulous dwarfism awareness event.  Last post I talked about traveling to New York for the Dwarfism Awareness Month Launch.  The event was empowering and the event was infused with pride, no doubt about it.  But the event wasn’t without its challenges, from a public awareness stand point.  At one point in the event, a group of about 50 or 60 of us gathered on 42nd Street, in the middle of Times Square, for a photo opportunity.  The photo opportunity for Little People of America soon turned into a photo opportunity for any random person on the street.  While we lined up for pictures, many strangers, passing by on the sidewalk, un-surreptitiously stopped walking, pulled out their cameras, and snapped a photo, sometimes in the midst of a giggle.  It got so bad, at one point, the average stature people in our group formed a human barricade around all the little people.  This didn’t really work.  It kind of added to the chaos.  It was a nice gesture though. 

LPA and others in Times Square
We should of, and probably did, expect as much.  After all, it was Times Square.  But it was a little difficult to swallow.  We were like, “Come on, give us a break.  We are launching Dwarfism Awareness Month today!” 

The second setback came two days later, when Former Florida Governor Jeb Bush used the m-word on MSNBC.  During a conversation about school reform on “Morning Joe” he said something like, “It is like being in the land of midgets and calling yourself a giant.”  Again, we have to take it with a grain of salt.  Not everybody knows the impact of the m-word.   But come on, you used to be governor.  

Hopefully, it won’t happen again with Bush.  A member of Little People of America who knows a person who is close to Governor Bush was able to get a message to the former governor just a few days after the MSNBC episode.  The message expressed the dwarfism community’s concern and disappointment with the Governor’s comment. Soon after the note was delivered, the Governor sent an apologetic email.  

Who knows what the strangers who saw Little People of America members on the streets of New York last weekend think about people of short stature.  But at least one former Governor will think a little differently from now on. 

Tuesday, September 25, 2012

Dwarfism Awareness Month Launch

Congratulations to the members of Little People of America for a successful "Dwarfism Awareness Month Launch 2012" event this past Sunday, September 23 in New York City. Back in 2009, LPA launched the first Dwarfism Awareness Month.  The launch was an effort to raise awareness around dwarfism in order to address common misconceptions about little people and to promote the message that people of short stature desire to pursue social, educational, and employment opportunities on equal footing as everyone else.  To deliver this message, LPA members pushed state legislators for resolutions recognizing October as Dwarfism Awareness Month and aggressively pursued media opportunities in conjunction with awareness month.  Over the first few years, LPA members around the country generated some media coverage for district regionals, which often fall in October, successfully partnered with Oklahoma, Puerto Rico, Delaware, and Indiana to pass awareness month resolutions, and organized creative ways to promote Dwarfism Awareness Month, (The Puget Sound Chapter partnered with a local coffee chain which included Dwarfism Awareness information on its cups in October 2011). 

2012 promises to be a successful year for Dwarfism Awareness Month.  Earlier in the Year, New York passed a resolution that identifies October as Dwarfism Awareness Month, and California and New Jersey will soon issue a similar resolution.  

About 70 people gathered in New York City for awareness month launch
To launch this year's awareness month, members of LPA gathered in Times Square on Sunday, September 23 for a kick-off event.  LPA chose Times Square because since July of 2012, CBS has been running a 15-second Public Service Announcement that promotes awareness.  LPA planned a Times Square event to promote the public service announcement and generate enthusiasm for the upcoming awareness efforts in October.  The event on Sunday included a media conference, at which LPA leaders, LPA sponsors and supporters, and Assemblywoman Nancy Calhoun (who sponsored the New York Resolution) spoke to local members and media representatives.  After the media event, which was hosted at the Hilton Times Square Hotel, LPA members went outside onto 42nd Street for a photo opportunity with the CBS Jumbotron and the Public Service Announcement in the background.  This was followed by a reception back inside the hotel. 

 

In my opinion, though it is clearly biased, this was a great way to kick off Dwarfism Awareness Month for 2012.  We brought attention to issues that impact people with dwarfism, we generated excitement among the membership, and we worked with other groups in order to make it happen.  Without the sponsors outside of Little People of America, we never could have organized the event.  This was important, not just because the support made the event possible, but because it sent the message that Dwarfism Awareness Month isn't just about LPA, it's about the entire dwarfism community.  In the end, all the groups that work within and on behalf of the dwarfism community, want the same thing -- opportunity, support and resources for people with dwarfism. 

Friday, August 31, 2012

Paralympics

Group of Athletes Marching into to Paralympic Stadium
The 2012 Paralympics opened in London a few days ago.  While at work, I watched part of the Opening Ceremonies from my computer.  As I watched contingents from country after country march into the stadium I was struck by how ordinary the athletes appeared.  Ordinary in this sense is a positive thing.  When it comes to public relations messaging for the disability community and specifically for the dwarfism community, I often say that people with disabilities are just like everybody else or I say people with dwarfism are just like everybody else.  As a large group of athletes in the stadium the Paralympians really did look like other non-disabled athletes or other non-disabled people.  If you focused on one specific athlete, maybe you could see a prosthetic limb or you would notice that an athlete was blind, wore sun glasses and hung onto an athlete nearby as a guide.  But it was easier, and almost more powerful to watch the groups as one body.  That's not say it's better to overlook or ignore the disability.  In most cases, disability is a strong, influential part of who we are as athletes and as individuals.  But taken as a whole, the image of the athletes in the stadium underscores the point that there are so many more commonalities between people with and without disabilities than there are differences.  With this in mind, it is such a shame that people with disabilities are so often judged, treated differently and discriminated against because of their disabilities. 

Scott Danberg with Team USA
Speaking of the Paralympics, congratulations to Scott Danberg.  The London Games are Danberg's fifth Paralympics.  An athlete with dwarfism, Danberg has competed in multiple sports, from power lifting to shot put to javelin.  This year, Danberg was bestowed with the honor of leading Team USA into the stadium while carrying the American Flag. Here is an interview with Danberg on National Public Radio.

Tuesday, August 28, 2012

Bill Veeck and Eddie Gaebel

a photo of Eddie Gaebel batting for the St. Louis Browns
Eddie Gaebel batting for the Browns in 1951
In the previous post, I wrote about a little person who is allegedly the lucky charm for the Milwaukee Brewers.  The most famous little person ever connected to a Major League Baseball Team is Eddie Gaebel.  Gaebel actually played for a baseball team called the St. Louis Browns for one inning of one game in 1951.  Bill Veeck was the owner of the Browns, which was one of the worst teams in the history of baseball. On the 50th Anniversary of the American League, in 1951, as a publicity stunt, Veeck signed Gaebel to a contract and brought him on to the team.  Early in the game, Gaebel was sent to the plate to bat.  He quickly walked on four pitches    
                                                                 then was replaced by a pinch runner. 

Last weekend, as I was looking for information about the Milwaukee Brewer Lucky Charm, stories about Veeck and Gaebel popped up in my internet searches.  As someone who loves baseball and is part of dwarfism culture, I've read stories about Gaebel hundreds of times.  The story is often retold.  This past weekend, when the stories popped up, what I found most interesting was the language that was used.  Back in the 50's, "midget" was the accepted term to identify a person of short stature.  Even recently, when stories about Gaebel were told, the word "midget" was used.  But in my most recent searches, I noticed that some accounts used the word little person.  A piece from a website called Baseball Suite101 actually uses the word "midget" in the headline, then includes a sidebar about the evolution of the word "midget" and uses the term little person in the body of the text.  It's kind of confusing to me why, if they acknowledge the evolution of the language, the website still uses the m-word in the title.  Nevertheless I think it was constructive for the story to make an acknowledgement of language.   Also, a few years ago, a writer from ESPN who was working on a piece about Gaebel contacted Little People of America for guidance on language. 

photo of Bill Veeck with no shirt in the bleachers at Wrigley Field
As I kid, I knew of Veeck as a guy with no shirt hanging out at Wrigley Field
People are short stature still face road blocks to opportunity.  These roadblocks are sometimes physical and sometimes social.  In the grand scheme of things, if a story about Eddie Gaebel uses the m-word, it is probably not that significant of a road block.  But it is heartening and encouraging to witness the evolution of language in stories about Gaebel.  I think it is a reflection of the ground that the dwarfism community has covered and a reflection of how much better the general population now interacts with and responds to the dwarfism community. 

Sunday, August 26, 2012

Mascots

When I was in eighth grade, a few friends and I would go to the high school basketball games on Friday nights.  I think there were five or six of us.  Two of us had older brothers who played for the Sophomore High School team.  We'd watch the sophomore game then, after a break, the Varsity High School Team would play.  The gymnasium typically filled up for the varsity game but wasn't very crowded for the early game, which gave my friends and I more physical and figurative space to engage with the game.  I don't know how many times it happened, but I have strong memories of my friend Tim, whose brother played on the sophomore team, toward the end of the games, pretending he was the coach of the team.  Whenever a time-out was called, he'd tell my other friends and I to huddle up.  From where we sat on the bleachers, we'd look at him and he'd start barking orders to us, make believing that we were players on the sophomore team.  Pointing to one of my other friends, he'd say things like, "Russell, you gotta stick that guy better," or "Mraaz, take it to the hole whenever Hinz feeds you in the lane."  Yet, whenever we huddled up, and my friend Tim went into coach mode, I was never assigned the role of a player on the team.  Even though my brother played for the team (by my brother's senior year, he made varsity), I was never assigned the role of Erick (my brother).  Instead, I was assigned the role of Bucky, the mascot, (Bucky was picked because we lived in Madison, Wisconsin and Bucky Badger was the University Mascot).  Tim would say, "Bucky, we need you.  Cheer louder." 

I was amused by the assignment at the time.  In fact, the name stuck and became one of my nick names in middle school.  I remember playing hockey on the ice rinks after school and my friends whacking their sticks on the ice and yelling, "Bucky," calling for the puck.  I still have somewhat endearing memories of those times in high school even though at some point I realized that assigning the one little person in the group the role of mascot was problematic, being that it reinforces the idea of rubbing the dwarf's head for luck and the idea of objectification if the dwarf is picked as the mascot for no other reason than his or her physical difference. 

A story my mother recently told reminded me of my days as Bucky.  She and my father were at a Brewers game in Miller Park in Milwaukee, Wisconsin.  She said that at some point before the game, a little person wearing a Brewer Uniform ran out onto the field to throw out one of the ceremonial first pitches.  She didn't know what to make of it but soon learned the little person was considered the team's lucky charm. She told me she had conflicted feelings about the situation. I agree.  While the crowd responds positively to the little person, and the intent is positive, it's hard to feel good about a situation in which a little person is assigned the role of lucky charm simply because of his physical appearance.  This goes back to traditional stereotypes of dwarfism and traditional roadblocks that are created as a result of these stereotypes.  If a person is defined by his or her physical appearance, it becomes more difficult to be judged according physical and intellectual abilities.  Just ask Paul Miller, the Harvard Law Graduate who was a little persona and was rejected by many law firms because of his physical appearance.

After hearing the story from my mother, I tried to find mention of the little person lucky charm on the Milwaukee Brewer website or anywhere on the internet.  So far, I haven't found anything so it's hard to know just how official the little person lucky charm actually is.  But nevertheless, even if he is an unofficial lucky charm, as my mother said, it still inspires some conflicted feelings.

Saturday, July 28, 2012

Figment of the imagination: unity among athletes

My wife and I are training for a Super Sprint Triathlon in Chicago.  The race is late in August. I am excited for the race for a couple of reasons.  Since my wife and I first started dating I have always wanted to compete with her in some kind of organized event.  We did so for the first time last year when we both ran in a Thanksgiving Day Turkey Trot in Madison, Wisconsin.  This will be our second organized event in which we are both participating.  Training together has been a lot of fun.  Every Sunday morning, we wake up early, run about a mile to a nearby beach, swim for 30 minutes or so, then run back to our place. 

I also love the camaraderie of organized events.  That's one of the things I loved the most about organized sports when I was young.  For two years, I was a coxswain on a high school rowing team.  I wasn't particularly good at it, and the day before a race time ate away at my nerves enough to do permanent damage, but I loved the bond that developed between the team.  I grew up in the Midwest.  There were no other high school teams in the Midwest so our club had to take these van trips to the east coast in order to find other teams against which to race.  Those trips in the van were miserable.  We were crowded, we got no quality sleep and we ate at fast food joints every meal.  But we bonded like a family because we were all in together.  We shared the same misery, and when the races were complete, we shared the same joy and relief.

My wife competed in a Sprint Triathlon soon after we started dating.  The morning of the race, we woke up around five a.m. and biked over to the transition spot where we stowed her gear.  So early in the morning, the only other people on the street in the middle of downtown Chicago were other athletes, also on their way to the transition area.  Though I loved Katie, I felt so lonely that morning.  It was as if all these Triathletes had something in common.  Though they were strangers, they were all a part of something unique that brought them together this early in the morning.  Because I wasn't racing I couldn't share what they all had in common. 

With those memories in mind, it's clear that I have a romantic notion of brotherhood or sisterhood between strangers when it comes to athletics, or any type of shared experience.  A couple of weeks ago, I heard about something that cut through the sentimentality pretty quickly.  I recently became Facebook friends with another person of short stature who lives out on the East Coast.  He is a school teacher and he competes in Full Triathlons.  On a good day, I could bike 23 miles. I could maybe run for 6.2 miles.  But I couldn't swim a mile.  And I certainly couldn't do all three in one day.  That's what's involved in a Full Triathlon.  And that's what this guy John competes in fairly regularly.  Pretty impressive.  If I thought there would be a sense of unity among all the athletes in a Chicago Super Spring Triathlon, I could only imagine how strong the unity would be among the Full Triathlon group.

Alas though, this unity may not be what it seems.  It may just be imagination.  I've written often about my disdain for people taking pictures of me because I am a dwarf, especially if it happens while I am on my bike.  I hate it because I know that the motivation for the picture is based upon ridicule, and because I fear where the picture may appear.  That's what happened to John.  While John competed in the bike leg of the New York Triathlon someone took his photo.  Worse, the photo was posted on a blog. Needless to say, the attached commentary did not reflect the glowing words so often these days written about Peter Dinklage. 

Now, awful as what happened to John may be, I know we all live in a world where fear and insecurity drive people to hostility toward others.  What happened to John is not out of the realm of belief.  But if it were to happen, I would expect the perpetrator to be a member of the crowd watching the event.  Someone maybe who had too much to drink, who got caught up in crowd yahoo mentality, who, like me the day of my wife's event, wanted to fit in.  But it wasn't a member of the crowd.  It was another athlete biking near John, (what they hell was he doing with his phone in the middle of a Triathlon?).  The first time I heard the story about what happened to John, my romantic notions of camaraderie  between athletes were destroyed. 

There are many silver linings to the story though.  Soon after the awful blog post was discovered, John's network of friends and supporters overwhelmed the blog, the New York Triathlon organizers, and the charity for whom the perpetrator competed with negative emails and notes.  Within a day, the blog post was removed.  More importantly, John is still competing.  And for every one yahoo out there, among the crowds or even among the other athletes, there are ten, if not a hundred, supporters of John who are with him every stroke, every step and every (what I should I say for biking, revolution??) of the way. There is no guarantee that what happened to John won't happen to me.  But if it does, like John, I will keep going.  

Sunday, July 15, 2012

Forward progress......

As a board member going in to the 2012 Little People of America Conference in Dallas, I knew one of the most significant issues at the board meetings and at the conference would be that of medical research.  The stage was set at the conference in 2011.  In Anaheim in 2011 we heard for the first time about groups like Biomarin, a pharma company developing what is called a treatment for achondroplasia, and we heard about groups that are raising money that will be directed toward research.  In this case the term treatment means drugs that address certain impairments found in people with achondraplasia, such as sleep apnea, spinal stenosis, fluid in the brain and bone growth.  Little People of America has never been directly connected to research.  However, as the major national organization for people of short stature, LPA would need to be in the foreground on the issue, providing information about updates in medical research to the membership and to the dwarfism community.

In the months just prior to the conference, Little People of America did two things.  First, it created a Frequently Asked Question document that aimed to answer some of the basic questions about medical research related to dwarfism. The document, titled, Emerging research and potential treatments in achodroplasia and other skeletal dysplasias is on the LPA website. Second, just prior to the conference, LPA drafted a position statement.  The statement was approved by the board of directors at the Dallas conference.  It is not yet published on the website.  Basically, in the words of the authors of the statement, it is "strongly neutral."  It stresses the importance of dwarf culture and of the community that is nourished and supported by a group such as Little People of America.  It does not support or endorse medical research but indicates that no matter what choices dwarfs and parents of dwarfs make in the context of medical research, they will continue to find support within Little People of America.

Though I was pleased with the outcome of the two documents, they didn't prevent the membership from getting more involved with the issue at the conference in Dallas.  We have a position statement, but there is still the question of whether or not LPA gets involved in research.  That question comes with a lot of complexity.  The complexity rose to the surface at the tail end of a medical presentation on Sunday morning of the conference.  At the end of the presentation, after members of LPA's Medical Advisory Board opened the floor to questions, a few members from the audience delivered passionate statements about the implications of "treating" dwarfism.  Though treatments are intended to improve quality of life from a medical standpoint, it is hard for some to navigate around the idea that the treatments are changing who we are as a community of people with dwarfism.  With this in mind, the treatments, and discussions around the treatments, can be interpreted as challenges to who we are. 

Also, some people had difficulty with the emphasis on the medical model of the research.  Little People of America is a social support organization, and any venture into the area of medicine should also have a social component.  Yet, there has not been any social research done in tandem with what the community is hearing about Biomarin and medical treatments. This made it very difficult to listen to the medical presentation, because there was little to suggest the social standing of the people who would be "treated" and of the social implications of the treatment on the entire community.

As the conference progressed, it became clear what would be expected of Little People of America.  Again, though LPA is not involved in research, it was agreed that the Medical Advisory Board and that at least one of the groups raising money for medical research would look to LPA for guidance when it came to research.  Though this is new to the organization, it's probably a good thing.  It's better that LPA try to figure out what is going on, then make recommendations on research that would potentially benefit our membership both medically and socially, rather than stay silent and allow things to proceed without our input.  It won't be easy.  This is new territory.  But it's territory about which we should be aware, and perhaps even into which we should venture.