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."