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.

 

 

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."

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.