Monday, May 27, 2013

Tall enough to reach the ground

Tiffanie DiDonato continues to make headlines with her memoir, "Dwarf:  A Memoir."  The book was published last year.  Soon after publication, DiDonato appeared on "Good Morning America," "Nightline," and other shows.  The memoir chronicles DiDonato's experiences with limb lengthening surgery, a surgery available to people of short stature that involves breaking bones in the arms and legs and setting them in such a way so that when the bones heal, the patient will gain extra height.  Over the course of several surgeries, DiDonato gained about 14 inches.  The book popped up in the news again this month when Dinonato made an appearance to talk about her book at the public library in a town called Marlborough.  The website published a story in advance of her visit.  Many of the stories I've read about Dinonato and her new memoir include mention of Little People of America's Position Statement on Limb Lengthening Surgery.  The story also included reference to the statement.  The story, like many of the other stories about DiDonato, incorrectly indicates that LPA is against the procedure.  The story states that LPA is against "limb lengthening."  While the official LPA statement addresses reservations with the procedure, including risks and the fact that it is not a necessary treatment, LPA remains neutral as an organization.  Rather than take a position one way or another, LPA tries to equip individuals with the resources to make the best informed decision.

I can understand why writers and the media would frame the position of Little People of America as against limb lengthening.  Doing so creates a conflict, or tension, and conflict and tension result in a more engaging television interview and book.  Yet, the artificial tension does a disservice to DiDonato, to Little People of America, and to the dwarfism community.  DiDonato may have made the decision not to get involved with LPA or with the dwarfism community.  There is no problem with that.  Only a small fraction of people with dwarfism get involved with LPA.  The role of LPA  is to be available for any person with dwarfism at any point in a person's life when he or she may want to get involved.  Perhaps not, but there may be a time in DiDonato's life when she wants to get involved.  An artificial gulf has been built between her and the organization because of the media's inaccurate representation of the Limb Lengthening Statement.  That gulf will make it harder for DiDonato to get involved in the future. Likewise, other people, besides DiDonato, who have chosen to undergo limb lengthening surgery, may feel unwelcome in LPA because of the inaccurate representation.

More importantly, the misrepresentations in the media hurt the entire dwarfism community.  In the articles about the surgeries, DiDonato says she wanted to be more independent.  The surgeries gave her the height and reach necessary to drive, fix her earrings, do her hair, reach door knobs, etc.. For most everyone, all of these things are essential elements that make a person feel independent.  It is understandable that, given a choice, a person would pursue the opportunity to be independent in this way.  I completely relate to the piece about driving.  I love driving but can't drive without pedal extensions.  Nothing frustrates me as much as when I can't drive a rental car because my pedal extensions don't work on a particular model.  For me, if I were ever to pursue limb lengthening, it would be for two reasons:  to drive without extensions; and to cross my legs (my short legs are unable to cross and I feel like I've been denied that appearance of sophistication that comes with crossing one's legs).  The thing is, if I were to have the surgery and if I gained 10 inches of height, I would still be a dwarf.  That's what I think is missing from the articles about DiDonato.  She explains that she had the surgeries for practical reasons, but by creating this gulf between her and LPA, the articles make it seem like the surgeries are also about leaving behind the dwarfism world.

Toward the end of the article, the reporter writes, "DiDonato said she still has bad days and challenges related to dwarfism."  In this sentence, reflecting a time long after the surgeries were performed, bad days are directly related to dwarfism.  Again, this suggests that the surgeries were as much about eliminating dwarfism than about gaining inches.

It may just be that I am defensive because I take personally the misrepresentation of LPA, but if other people read the media portrayal the way that I do, than that is a problem for all people with dwarfism. 

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