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." 

2 comments:

  1. Gary,
    My 20 yr old daughter is near the end of her lengthening for achondroplasia. We have continued to be active in LPA and continue to feel close bonds with our LPA friends. She and I are constantly contacted by new parents with questions about lengthening. The myths that circulate LPA about the process are so unreal. At the national LPA meeting in Dallas a couple years ago, Chandler attended with external fixators on her arms. Although everyone was really respectful and positive, I was shocked at the number of parents who were shocked that she was not on any pain medicine. They have this idea that the procedure is something that it absolutely is not. Although we don't promote lengthening to our LPA friends (it really has to just be a personal choice) we do feel it's important that people know the truth about it. The procedure does have some medical benefits, it's not all that painful anymore, the risks are nothing like they were ten years ago (much less 60 years ago), it is not only cosmetic, the decision to lengthen has nothing at all to do with not accepting one's dwarfism, it doesn't require dropping out of school/life for a year at a time, it is covered by health insurance, the scarring is minimal and reviseable (almost no scarring with the new internal Precice rods), the decision does not have anything to do with self esteem except it should be noted that it takes quite a self assured person to make this decision. Not everyone who learns about lengthening will choose it. It's unfortunate that those who do choose this path are met with such animosity and hatred in our own community. We continue to be active in LPA because my daughter does still have achondroplasia, she is still a little person, and we do feel a common bond with our LPA friends. Her experience is at www.facebook.com/ChandlerInBaltimore

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