Sunday, April 5, 2015

Message Evolution

Tiffanie DiDonato is in the news again.  Back in 2008, she made headlines for her decision to undergo limb lengthening surgery.  News coverage of her experience frustrated me.  Headlines such as "Little Person No More," sent an inaccurate message. Whoever elects to have the surgery, and whoever undergoes the procedure, is still a dwarf at the end of the procedure.  For the most part, whoever undergoes the procedure, still has to face similar physical obstacles and social obstacles that may stand before individuals with dwarfism.

In an ABC Story from 2008, DiDonato said that as a result of her surgery, "I'm going to be free. I'm going to be independent."  I don't think limb lengthening is necessary, Yet, I realize that some obstacles may in fact disappear as a result of the surgery.  One example is driving.  I've seen social media posts about dwarfs who are able to drive without peddle extenders after limb lengthening surgery.  Driving is a source of independence.  But this doesn't mean that limb lengthening is a link to independence. Whether a dwarf uses pedal extenders or not, he or she is able to drive and exercise independence.

A few years ago, news coverage promoted an autobiography written by DiDonato.  The book was called Dwarf, How one woman fought for a body -- and a life -- she was never supposed to have.  I haven't read the book, but coverage of the book was also frustrating.  The coverage made it seem as if the book was all about the limb lengthening surgery and how that surgery made her life "normal." "Tiffanie DiDonato dreamed of living a normal life—of being able to reach the sink unassisted or even someday driving a car so she could have the independence so many of us take for granted." Also, the subtitle makes it seem as if one's body, and dwarfism, define a person's life. 

I do give DiDonato credit for writing the book.  In order to attract an audience, a writer has to be honest. No one would ever want to read my journals because I am rarely honest, even with myself.  Sometimes I am not honest because I am terrified that someday someone may read me journal.  But DiDonato was honest.  In a news story from 2012, DiDonato said "I was honest with myself, if I wanted to die, if I felt like that's what I wanted to do, then I wrote it down."


This past week, a new story about DiDonato was published, a story about her experiences as a mother, raising a toddler.  At first, I was concerned. I thought the story would send the message that if she hadn't had limb lengthening, she could never be a good mother.  Early on in the story, the piece did reinforce a misguide message from coverage of DiDonato years earlier.  The reporter wrote, "Born with diastrophic dysplasia, a rare form of dwarfism, she underwent limb lengthening surgery...allowing her to life an independent life."  Again, whether someone is four foot tall or three foot tall, independence is not about height.  Independence is about the environment, supports and accommodations.  Despite that message, much of the article focused on her strategies as a mother responsible for a three-year-old.  Rather than celebrate limb lengthening as a tool that allowed  her to care for her son, the article looked at DiDonato's challenges as a parent, challenges to which all parents, dwarf, disabled,  and non-disabled, could probably relate.  


I am not a parent. I don't know if the article was accurate in the realms of parenting and disability.  But I do know that the article did not dwell as much on the limb lengthening as the answer to obstacles that face people with dwarfism.  I hope that becomes a trend if DiDonato continues to be in the news in the future, because the secrets behind what defines a person is not found in dwarfism, and certainly not in limb lengthening.  



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