Showing posts with label book review. Show all posts

Remember when we were told fairy tales or fables that had some moral lesson embedded in the story line of prince-princess-magic-fairy-talkingAnimals-AlwaysSomethingInThrees-evil-witches-and-castles? The point of these stories was mostly to help young minds wrap around weightier life lessons of morality and issues of sound character?

I was a short bus rider from Kindergarten to 12th grade without knowing that I was a short bus rider. Teachers would say "You can only choose 2 friends to ride with you.." on class field trips. And always I would have trouble choosing between one squirming-hand-raised buddy and another pal's pleading face. By the time middle school came around I had learned to tell the driver to please blast the pop-music radio station as he worked the controls to deploy the mechanical lift. There were many mornings when "Pretty Fly for a White Guy" by The Offspring was my entrance music to 6th grade: So don't debate a player straight/You know he really doesn't get it anyway/Gonna play the field and keep it real..the world needs wannabees so (HEY HEY!) Maybe those are some reasons for why I didn't know what that short bus represents in our larger society. Because it never occurred to me during my public education career that what I (on most days) excitedly rode to school in was a long standing symbol of pain, oppression, shame, and exclusion.. for so many.

Jonathan Mooney was one of these many people for which that was true. This book isn't a trip down memory lane where we revisit traumatizing childhood moments for Mooney. He couldn't sit still as a kid, he hid when it was his turn to read, he took on the persona of the all-star soccer "dumb jock" to compensate for his academic failings. This wasn't about a man who having graduated with honors from an Ivy League decided to preach around the country to inspire other kids with disabilities. Quite the opposite in fact. The book begins with Mooney about to pitch his "Overcoming Disability" story - that template plot-line that mainstream media so adoringly idolizes from the disability community - and instead foregoes plans to allow a film producer to tell his story. As a reader, that's the moment I thought to myself dude I totally respect you and will follow you on a road trip to anywhere - no questions asked. Let's dooo this thing! 
Trusting a narrator is telling me the truth and actually connecting with them, on a personal and reflective level, are actually two very different things. Before I picked up this book I was weary about whether or not I could connect with him. As I'd mentioned, my experiences on the short bus were very different from Jonathan's childhood experiences on the "special van." For him it was only a reminder of how he didn't fit in, and was never seen as 'normal' in school - though his disability was invisible. I didn't expect to see the characters Mooney comes across on his road trip with such empathy, and also a shared discomfort. Not through his eyes anyway. Could two different experiences between short bus riders come out on the same side of the disability community? Would we have deeply different philosophical understandings of a person's identity and their disability? Would a self-professed nerd learn anything from a guy who used to be some "dumb jock"?


With the kind of honesty and humor that few would utter aloud but everyone is thinking it Mooney shares the social experience captured inside the short bus, all while steering its passengers (and the reader!) towards a horizon he frequently references. "We are told to chase it---in our culture, in our families, in our lives. But when we chase it---as I did---it disappears. Normalcy is like a horizon that keeps receding as you approach it" (33). The power of Mooney's journey is that I didn't expect to care or think about whether or not I've been doing this all along myself.


Normalcy. Human value. Freak. Human race. Genetic variance. Diversity. Community.. Those are words and concepts I struggled with (and still do) when I first realized I have a role in the disability community. While working with the young women's mentoring program has helped shed some lucidity on my understanding of those words, I was stunned and jealous at how precisely Mooney could navigate his own confusion and through that offer some clarity on these ideas. "I'm sure that many people had thought that Butch was stupid throughout his life....It would be patronizing to say that Butch was like everyone else. Butch wasn't normal, and he wasn't a freak. He was wondrous" (102). Over and over Mooney brought me to the destination, turned on the metaphorical headlights of his short bus and I could see my own misgivings of the people and things I'd been racing to flee. One of the people we meet along this journey, Ashley, in particular brought these knee-jerk instincts to me right away: "I didn't know if I could truly value a body that was so damaged...And if Ashley couldn't learn, was she a fully functioning member of the human race?" (113). I flinched when I read this because it's something I have thought about in private to myself, not even feeling like I could think about them at work because the thoughts just seemed so wrong. I trusted him as the driver of this short bus and narrator of this insanely intimate journey because he elegantly steers a short bus through the thoughts I can't navigate on my own.

Stylistically, The Short Bus: A Journey Beyond Normal presents individuals in a way that is humanizing, self-reflectively critical, honest, and intelligent. Mooney always makes it a point to describe the person first, their home, their habits, their lifestyles and what drew him to meet these individuals. Throughout these descriptions he weaves facts and history succinctly, including only points that are sure to make a lasting impression on its readers: "One of the most powerful concepts within the disability rights movement is the idea that we all have temporarily able bodies....I was still scared of that idea, to be honest, but after Cully and Chad, I knew what to do with that fear" (179). This style of narrating his story was markedly different from Andrew Solomon's Far from the Tree which read more like a textbook at times, and inundated readers with a wealth of knowledge, medical information, and labels that I at times thought nearly lost the humanity and the lives they sought to portray. In contrast Mooney takes all that is humane about individuals he meets and thrusts them next to the things about themselves that fall outside what is expected. "What I do know is because of Katie, no one was left out, no one won, no one lost, no one cared, and we were all more ourselves than we were before the game" (195). When we see these side by side, those are the moments when I felt like I was riding shotgun beside him.

By the end of the journey I wasn't left with just a string of stories and individuals along Mooney's road map. These individuals took a place on the short bus and shared with it some piece of their own identity, each story adding to the community of Mooney's short bus passengers, "We need Cookie as a testament not only to the importance of community but to the power of transformation, a reminder of our ability to create ourselves" (169). Their lives are not centered around this short bus that Mooney drove to meet each individual, and they are not trapped by the confines of what it symbolizes either. It's a story of a community made up of individuals that transformed and freed the driver of the short bus, and left this reader wondering what more of herself might be created if she stopped -for a moment- racing towards that horizon of normalcy. 

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.