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.



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