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.  

This is BS

Sometimes, as a little person, it's as if you inhabit a different world than everybody else.  The differences between the two worlds aren't because of the physical features of dwarfism but because of the differences between the place the little person presumes to take in the world, and the way in which other people perceive the place of the little person.  The two incidents in St. Louis were examples of this.  I was carrying on, minding my business, but I was not allowed to mind my own business because I was treated:

1.  First, as an animal or a toy who could be acquired and taken home; and
2. Second, as some kind of creature who could cause harm and is feared.

Another example popped up this week.  On Saturday, September 13, the Business Standard ran an article titled "Rare surgery frees 16 year-old from Dwarfism."  I first read the article on Wednesday, after it was posted on Facebook.  The title alone is shocking.  The title seems so far from the reality of most people with dwarfism who I know that I thought the article was a joke.  In fact, when the article was posted on Facebook, the Business Standard logo looked like the image to the left, which made me think BS actually implied bull shit, and that the article was some sort of satire.


Alas, the article was not a joke.  The "rare surgery" referred to was limb lengthening.  The 16-year old freed from the shackles of dwarfism gained 12 inches as a result of the procedure, which isn't really so rare, especially in Europe.  He went from three feet in height to four feet in height.  I happen to be about four feet two, a couple of inches taller than the 16-year-old.  Even though I have two inches on the boy who is now dwarfism free, I still suffer from the curse of dwarfism, as the article delicately refers to my diagnosis of achondroplasia.

Now that the 16-year is dwarfism free, I wish him the best.  I hope the doctors who lifted the curse continue their work, so that others may also someday be free.

I probably shouldn't make light of it all.  For all I know, the experiences of the 16 year old boy are much different than mine, and for all I know his life may improve.  Nevertheless, many people who are part of Little People of America, and many people who are part of the dwarfism community that I know, read the story.  For the community that I am a part of, a story like this is insulting and embarrassing.  It's embarrassing and insulting because our lives aren't going to improve if we gain 12 inches.  Within the context of dwarfism, our lives will improve when we are freed from the curse of stigma.  The Business Standard and this article did nothing but build upon the stigma that already exists.

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 Boston.com 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 Boston.com story also included reference to the statement.  The Boston.com 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 Boston.com 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. 

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." 

Relativity Theory

In high school, I was a member of the boys gymnastics team.  I competed on the parallel bars.  In gymnastics, especially if, like me, one competes in just one or two categories, there is a lot of waiting around.  In practice, you spend most of your time waiting to use the equipment.  During competitions, you spend most of your time waiting to perform your routine.  At practice one day my sophomore or junior year of high school, waiting my turn to run through my routine on the parallel bars, I had an epiphany.  Nearly 25 years later, I still remember that epiphany.   While waiting in line, I was watching one of my team mates practice some moves on the equipment.  He was a relatively short young man compared to the rest of the male student body at my high school.  He was probably five foot three or five foot four.  At the time I was probably about four feet tall.  This was the mid 1980's.  So limb lengthening wasn't as well known as it is today.  In fact, I probably had never heard of limb lengthening at the time. But I remember thinking, if I grew ten inches, I would still be considerably shorter than my team mate, who himself was considered a short guy himself. 

Because we spent so much time on the gymnastics team sitting around thinking about things, a lot of us considered ourselves amateur philosophers.  In fact, a small group of us would go out to Burger King once or twice a week after practice.  One of us would go up to the counter to order a large soda while the rest of the group found a table hidden away in the back of the restaurant.  We'd sit around for about hour talking about what we imagined were deep issues, sharing the soda and sneaking refills at the soda fountain.  With this amateur philosopher status in mind, I told my team mate about my epiphany when he finished his set on the parallel bars.  He and some of the others waiting around near the equipment appeared pretty impressed.  With his feet on the mat, and his arms resting over the bars, he gazed off toward the wall of the gym.  "Wow," he said.  "You are right."  

Though we were full of ourselves, selfish, and a little pretentious to sit around Burger King, pretend to be Albert Camus, and steal soda, I did learn something that day at gymnastics practice.  I learned that height would never really be an issue. Sure, I can't reach half the stuff I want at the grocery store, I can't ride the Batman Roller Coaster at Six Flags, I half to jump up to avoid getting knocked over by a ski lift, and people sometimes condescendingly call me "Big Man!"  But no matter what height someone is, a few more inches would always do some good.  Just ask Russell Wilson, one the most talented quarterbacks in the NFL draft, but whose stock was low because he is just five foot eleven.  I need more than a foot and a half just to get to five eleven.  I learned that day that, like so many other things, height is relative.  Yes, it is a concrete number.  But compared to the many other things that are used to measure a person's life, it is relatively insignificant.  Rather than worry about ten inches, six inches, or four inches, it better to invest in attributes that better define who we are -- trust, honesty, dependability, educations, professional skills, experience, etc., etc.....  Not that I have much of any of those.  But they seem like more worthwhile investments. 

That is what I learned so many years ago at gymnastics practice.  Perhaps a little corny, but no more corny than sitting around Burger King acting like Camus.