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.