Dwarf: A book review

Dwarf is a memoir by Tiffanie DiDonato about her experiences as an individual born with diastrophic dysplasia, a very rare form of dwarfism. Tiffanie underwent bone-lengthening procedures and the book is centered around her life leading up to the surgeries.

Tiffanie and I are both MA natives which I hadn't realized prior to reading her story. But beyond sharing home states she and I also shared an orthopedic surgeon, Dr. Shapiro from Boston Children's Hospital. He was the guy who diagnosed me with O.I. about two or three years after performing Tiffanie's first bone-lengthening procedure. The way she described Dr. Shapiro is similar to the way I have described him in previous blog entries - beyond that though our similarities went no further. Tiffanie would later on, as a teen, request another bone-lengthening procedure that Dr. Shapiro would refuse (citing medical risks); she and her mother then approached a different surgeon at UMass Medical who granted her the procedure. At the end of all the surgical bone breaking, wires ripping her skin, turning pins, reader-face-flinching physical therapy, and rehab -- Tiffanie went from being 3ft 8inch to 4ft 10inch. The bone-lengthening procedure was done to her arms, then to her tibias, and then also to her femurs.

I left something out though. A reason why I picked up the book is in the hope of possibly learning something about myself. I'm exactly three ft tall and have been since about fourth or fifth grade. While I do recognize that I'm obviously short I don't readily think of myself as a little person or as a dwarf. It's probably because I think of the shortened stature as a symptom of the O.I., the fact that I saw the hundreds of fractures as a bigger in your face than being unable to reach something from the counter - probably has something to do with the fact that "oh yeah, I guess I also qualify as a dwarf, technically" always comes as an afterthought. But still I wanted to learn more about the community of little people, the fact that she was also a woman made my hopes that much higher that I really wanted to say at the end of it: oh cool, so that's something else I share in common with another community. But I never said that at the end of the book, not even during any other part of the book either.

Tiffanie describes the need to be creative when she was a child by standing on her mother's cookbooks, using a spatula, and other "reach tools" (as she calls them) to get around her home and school. Similar to her I've used similar such household objects to accomplish things, whether other people considered them safe was not something I ever thought was my problem. I had things to do on my own that other people could do on their own, and that was all I ever saw in that process: this is how I'm doing it on my own. For Tiffanie these tools came off in the book as something of an embarrassment, or as something annoying and shameful by the time she reached middle school. Much of the book is filled with descriptions and retellings of these instances in varying environments. For people who want to read the book I won't go into too many spoilers about the build-up to her decisions for requesting the bone-lengthening surgeries.

But I will say that the one person in the book (other than Dr. Shapiro) that I was rooting for was her friend Mike. She and Mike knew each other through mutual high school friends and he was that boy every girl wanted. They quickly became best friends and he would repeatedly tell her that he loved her for the way she is, that she didn't need the surgery, and in fact he seemed to be the one friend who she let in on the details of the medical procedure. The evening before her second operation she spoke with Mike who insisted that Tiffanie didn't need the surgery:
"I could tell he wasn't happy with my choice. Like my dad, Mike never understood how differently I saw myself. He could never comprehend just how hard it was for me to reach the milk off the top shelf in the refrigerator. To be eye to eye with Bruiser and to come up only to my friends' hips --- I hated it all" (101).
Again and again throughout the book this sentiment and thought process runs throughout. And it was difficult for me to have sympathy or empathy for Tiffanie who seemed to be undergoing what she describes as an excruciating medical procedure, because she "..hated it all." It made me simultaneously incredibly sad and frustrated by her. Like a good friend though (that I hope every individual has) Mike stands by her throughout the process and plans a delightful sweet sixteen party with her parents.

Why did this aspect of Tiffanie's life make me frustrated?
Is it because I was envious that Tiffanie had the option of undergoing this surgery and it was never on the table for me? Is it because I have never thought to get a second opinion about my bones beyond Dr. Shapiro's advice? Is it because Tiffanie was able to withstand the physical pain of the operation and rehab that I could barely stomach just on paper? Is it because Tiffanie wouldn't accept herself as is, but would only accept the version of herself she wanted to be? No it's not just any one of those reasons. Because that would make the whole storyline of living with a disability for both her and myself far too simple. And it's not simple. The thing is, whether I agree with her decisions or not I can respect that they didn't come lightly. Her decisions impacted more than just the day-to-day pin-cleaning that she had to do for nearly a year. It changed more than just the way her friends saw her, and the fact that she was able to afford and drive her dream car - a BMW to college without pedal extensions. It changed more than just the relationship between her mother and her father. It made me sad and frustrated because she hated the way her life was enough to put herself through incredibly painful and medically-risky procedures.

I was raised with the hope that I can always adapt to the world and work with it to adapt to me. That by doing so I could reach my goals and achieve (maybe not on the same playing field), but access the same achievements my friends who do not have a readable disability attain as well. My mom notoriously told doctors that she did not want me to have the skin biopsy after I was born to see which side of the gene the O.I. came from because "what was the point? It wouldn't change anything, you would still not be cured. And they said it would leave a scar so I told them "no."" From those first few hours I was taught to change the things that I could, and that's what I've been doing ever since: again and again I have worked to make those hopes a reality. But I can't imagine doing that because I hate myself or my life.. and then to undergo those changes (to myself) with the expectation that I would hate myself or my life any less. That's a risk that I could never gamble. After Tiffanie goes to college and is done with the surgeries she writes very briefly about this realization:
"The reality was this: I had no idea how big the world really was or, more important, how I was going to fit into it" (180.)

So as I said before I didn't really learn anything new about myself from her memoir. I learned about someone else's story, someone who took a journey propelled by decisions I don't really agree with -- but it's her own and she has claimed it (kind of*). Tiffanie at the end gets married and begins her family by the conclusion of the book, and while that gave off the impression that she had found a way to create her own world where she would fit into, I still didn't get a sense of how she fit into a world beyond herself and her family. Maybe it's through her memoir and by claiming her story? I don't know. All I know is that after finishing Dwarf I'm left with what I already knew: I fit into this world by being who I am as I am, and growing as I will.

*The book is called Dwarf but she writes in the beginning
"So let's be perfectly clear: I am not a Midget. I am not a Dwarf. Please, just call me Tiffanie" (xiv). Then why title a memoir about decisions related to a diagnosis by a label you don't identify with? Don't tell me about selling books and raising controversy, I am bored by that and don't care. Tell me, instead, about owning a story in a way that she tries to own her life - on her own terms.

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2 Responses to Dwarf: A book review

  1. I loved reading your perspective on the book. You make some excellent points. And, Mike! Oh my goodness, I couldn't even mention him by name in my review because the way his part of the story became All About Tiffanie really upset me, but I didn't want to post a spoiler.

    I had a friend from middle school through college who had O.I. (we called it Brittle Bones) and you're right--she was tiny but I never thought of her as a midget or a dwarf. Maybe because she was in a wheel chair? Or maybe because the bigger issue was, "Don't be too rough with Rachel, you could break her."

    Rachel's not alive anymore (unrelated to O.I.), but I'm sure she would have hated Dwarf. For one thing, she was never one to feel sorry for herself, and for another, I imagine that, as difficult as the idea of Tiffanie breaking her bones on purpose is to me, it must be ten times as upsetting to someone whose leg would break if the driver of the bus she was buckled into braked too hard.

    1. Hey Ali!

      That's quite the coinky-dink that I randomly came across your blog and that you had a friend w/O.I.! I appreciate your comment, especially because the way you saw your friend Rachel says something about the way other people view me as well -- not necessarily as someone who is a dwarf or a midget either. This has been consistent among my personal friends too. Thanks again for your comment! - Sandy


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