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.

Sunday, July 8, 2012

Different motions -- more on Entertainment Panel at 2012 Conference

four people sitting at a table participating in a panel discussion at lpa conference
Yesterday, July 7, I wrote about a panel that I had sat on as part of the 2012 Little People of America Conference in Dallas.  In that post, I focused on the impact of the show "Life's Too Short" on dwarfism audiences in the United States. In addition to providing a good discussion around "Life's Too Short" and other issues related to entertainment, the panel reinforced in my mind a decision that Little People of America made within the past few years.  A few times since 2009, the Little People of America Board of Directors has addressed a motion, or a resolution, that, if adopted by the board, would have forbidden any type of recruitment by the entertainment industry at Little People of America Conferences.  In the past, Radio City has recruited little people at national conferences to perform as elves in the Radio City Christmas Spectacular.  Radio City's presence at conferences raised two concerns.  First, it pegs dwarfs as an industry specific community for employment.  If no other company is recruiting employees at conferences, it sends a message to younger people that people with dwarfism are expected to go into entertainment.  Or, it sets up Radio City as a fallback measure for people who are struggling to find other employment.  This happened to me to some extent.  I was in the midst of a job that wasn't going anywhere.  I heard Radio City was fun, so I thought, "What the heck! I will give it a shot."  I performed with the show in Chicago for two years.  It was a lot of fun.

Second, some people say that elves reinforce traditional stereotypes of dwarfs as fantasy creatures, perpetuating stereotypes that make it difficult for the general community to treat people of short stature as they would others.  Whether this is true or not, if some people believe it, and if Little People of America appears to support it by partnering with Radio City, it creates a conflict.   In an attempt to terminate the relationship between Radio City and Little People of America, and to prevent future types of relationships, a motion to deny entertainment recruitment at the conference was introduced.  While I agree that using Little People of America Conferences as a space to recruit dwarfs for entertainment roles is problematic, I was against the motion.  As an organization, Little People of America is meant to be a space in which all people with dwarfism should feel accepted and welcomed.  Such a motion would have implicitly judged some little people negatively for the decisions they made.    Indirectly, it could have made them feel unwelcome. 

I supported a different motion.  A motion that would welcome Radio City to national conferences, but only if at least three other employment industries (non entertainment industries) also attended conferences with the intent of hiring little people for jobs.  By providing options other than entertainment, this motion would address the problem of sending the message that there is the expectation that many little people will pursue entertainment as a career.  In the end, it was the second motion that was approved by the board.  Next year, at the 2013 conference in Washington, the motion may be tested for the first time.  Little People of America's Employment Committee Chair plans to host a job fair.  I am very excited and believe the job fair will be a success.

But once, on a conference call within the past few years, the board came within  just a vote of passing the original motion.  I hadn't thought about it much recently.  But sitting on the panel last week, I was relieved that the original motion never passed.  On the panel was an actor and a recruiter.  And within the audience there were more actors who participated in the entertainment field.  As I said before, Little People of America's role is to create a welcoming environment, regardless of what type of decision an individual has made in employment.  It would have been strange and uncomfortable to sit on the panel, knowing that some people in the room had been made to feel unwelcome because of a policy decision made by the organization.

This is not to say that Little People of America does not have a role in confronting negative stereotypes in entertainment, and promoting positive awareness and positive messages of dwarfism.  We do have a role and a responsibility to that end.  And sometimes, that responsibility will force us to go after the entertainment industry or least specific aspects of it.  But this doesn't mean that Little People of America can create an environment in which people of short stature feel unwelcome within the organization.

Saturday, July 7, 2012

Life is still too short

Late last year, I posted a blog entry about the criticism of a show called "Life's Too Short."  The show is a pseudo documentary or pseudo reality show about an actor in England who is a person of short stature.  In the show, the actor Warwick Davis portrays an angrier, meaner, more self indulged version of himself, a down on his luck actor and dwarf talent manager who is trying to revive his career.    When the show ran in England, it generated criticism from the media and from the dwarfism community, many of whom thought it objectified and humiliated the dwarfism community.  Defenders of the show claim the episodes don't make fun of little people, but rather comment upon situations in which little people sometimes find themselves.

Early in 2012, criticism from dwarfs in England mounted.  The show was scheduled to debut in the United States, on HBO, in March.  Some of the English critics were hoping that people in the United States would rally against the show before it premiered on HBO.  Interestingly, there was no response from little people in the United States.  One person told that it might be because HBO is a premium cable channel.  Not as many people have the channel and so not many people would have watched the show.  I don't think that is the case because "Game of Thrones" plays on HBO and plenty of people comment about it.  The reason might have been if people were upset with the show, they wouldn't have reached out to Little People of America because they don't think of it as an advocacy organization. I don't think this is true either.  Though Little People of America's main focus is support and resources, many people do urge the organization to act on advocacy matters, and in March it had just come off of an advocacy campaign around Rosie O'Donnell.  In my opinion, the show just didn't impact people in the United States the way it did people in England.  Earlier this week, I was given some insight about why people may have reacted differently.

The blog post from December 2011 noted that in 2009 I had the chance to participate in a panel with Warwick Davis.  Again at the 2012 Little People of America Conference I had the chance to participate with Davis on a panel, on which we talked about roles of people with dwarfism in entertainment and the casting of people with dwarfism.  As part of the panel, Davis spoke about his experiences with "Life's Too Short."  Talking about the criticism of the show, Davis speculated that people in England were more outspoken because of personal liberties.  In the United States, residents embody the idea of personal freedoms.  External entities, like the government and organizational bodies, are expected to respect the idea of personal freedom, expression and choice.  In England, though individuals obviously have their freedom, there is more of a collective will and collective body that is expected to act for the common good of the group.  In England, the show was viewed as an attack on the group. In this case, the group was dwarfism. As a result, groups looking out for the good of dwarfs, acted against the show.  In the United States, the show wasn't interpreted as an attack on a group.  Rather, it was interpreted as self expression.  Many people may have disagreed with this type of expression.  But people didn't feel it was their place to act against an individual's self expression.  If they had, it would have been an attack on the individual's personal liberties.  (As an aside, it's interesting to apply this theory to government health care in England and the backlash against the Affordable Care Act in the United States)

Again, I am not sure if this interpretation is correct.  But the fact remains that, since March, I've heard no criticism of the show.  And, no one who attended the panel discussion at this year's Little People of America Conference criticized the show.  Just like in December of 2011, when I originally posted,  I still haven't seen the show.  Whether the show is good or bad is for everyone to judge.  My thoughts wouldn't make too much of a difference on what other people believed.  What's most important though is that people express their opinions.  While those opinions may not lead to a show's longevity or drive a show off the air, they will make people think.  And those thoughts will have an impact on future shows that feature people with dwarfism and future roles taken by people with dwarfism. 

Friday, July 6, 2012

Accommodations at the 2012 LPA Conference

The 2012 Little People of America Conference is winding down today after a week of educational, social and medical programming.  This year's conference was hosted at a Sheraton Hotel in Dallas, Texas.  The Sheraton and many institutions around the city did their best to make visitors to Dallas feel welcome.

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In addition to the physical accommodations made by the Sheraton, the Dallas Fort Worth airport also announced the installation of "step n wash" retracting stools in each of the airport's bathrooms.  When we arrived on Friday, June 29, my wife checked for a stool in the bathrooms, but couldn't find one.  Yesterday, on our way out of Dallas, we both checked bathrooms for the stools.  Again, we couldn't find any.  I imagine there is an explanation.  Either the stools integrate very well into the built environment and I couldn't find them, or the airport is a little behind on the installation of the stools.  If the latter is the case, it is too bad the stools were not ready in time for the conference.  But the step n wash stools are intended to be a permanent fixture at the airport.  More so than for a one week conference, it is important that the stools be available in the long term for all travelers who may happen to need them, not just people with dwarfism.  After all, there have been plenty of conferences in the past when dwarf travelers have been forced to adapt to the airport environment around them.  But going forward, it would be nice in Dallas and in cities around the country if the airport environment and other surrounding environments continue to make attempts to be inclusive of people of short stature.   And it would be nice if those inclusive measures turned out to be permanent, rather than just temporary changes that would disappear after conference attendees went home.  I think people will find, as the Dallas airport has hinted, these accommodations many more people than just people with dwarfism, and when implemented correctly, these changes won't interfere with the interaction of anyone else in the built environment.