by Emily Rapp
Published by Bloomsbury
240 pages, 2007
Buy it online
Tragic Time Warp
Reviewed by Andi Shechter
I had spinal surgery two days after my college graduation ceremony, about a month before Emily Rapp was born in 1974 with a condition that caused a shortened and deformed leg. She had her first orthopedic surgery at only 18 months, underwent numerous procedures and finally amputation. As someone who has had to deal with disability, I wanted to understand Rapp's situation, and expected to in reading her memoir. But Poster Child feels as if it were set 20 years earlier, or that I lived on a very different planet than did Emily Rapp.
In the mid-1970s the disability rights movement and Berkeley's Center for Independent Living were alive and kicking. Independent living programs were a relatively new concept -- services for people with disabilities by people with disabilities. While Berkeley's was the first, it was not the only. This was not some secret project. There were laws about inclusion, laws about education for disabled kids (Sections 503 and 504 of the Rehabilitation Act of 1973 was a precursor to ADA), and independent living programs sprang up all over the United States.
The Rehab Act of 1973 was law by the time Emily Rapp was born, even if it wasn't fully understood or the law of the land. During the late 70s, while Emily was very small, I was participating in disability awareness training seminars for public and corporate employers. While Emily's parents, (her father a Lutheran minister) were clearly focused on the medical and social issues of Emily's life, there is no hint that they ever looked outside of that model for assistance. It's hard to imagine that Rapp's father never dealt with a disabled parishoner needing assistance, nor that anyone in the school district ever mentioned Section 503 or "accommodation" for Emily. It feels mean-spirited to suggest that the Rapps lived either in a backwards community or a bubble, but there were lots of news stories, lots of headlines. Services existed.
Yet Emily's story is that of a poster child, of a "crippled children's," 1950s mentality. Reading about her early life appalled me. Her doctors told her mother she was too young to experience phantom limb pain after her foot was amputated. After her birth, her parents sought reassurance that her mental abilities were sound. Rapp explains. "At this time, there were still some suspicions that physical disabilities brought with them mental deficiencies as well." But the doctor assumed her parents that "her eyes look bright." Therefore, apparently, Emily would not be developmentally delayed. This is medical expertise in the 70s? Perhaps the medical advances weren't that advanced in Nebraska or Wyoming, but it seems awfully parochial to assume that just because a hospital was not in New York, or Boston, or Los Angeles, that it wasn't up on procedure and thinking.
Rapp went through more procedures, surgeries and fittings for artificial legs than most of us can imagine. When she was very young, explanations were hard to understand, and she withstood so much. She mentions phantom limb pain, but not the ordinary pain of surgery or of braces and procedures to set legs straight that could not be straightened. As she grows, she constantly outgrows the prostheses she has and spends hours sitting around in dusty, dirty, nasty offices full of plaster and tools and people yanking her this way and that. These offices/labs where she was fitted with artificial legs sound like miserable settings for anyone, especially a little girl, often staffed by seemingly weird men who had a rather intimate relationship with this child. She reports this, as she does most of her story, without a lot of feeling. Perhaps she views emotion as weakening her story, but its absence can leave you without sympathy or understanding. And isn't that why anyone writes a memoir, to offer their life story for our enlightenment? So we can get it, get what they went through, why they turned out the way they did?
It is difficult to develop empathy or sympathy for Rapp, even when she tells you that she was often the only female at the prosthetics office, talking only with far older men, often war veterans. No one there was her peer, no one had an understanding of her situation. She doesn't seem to want any sympathy though. Maybe she wants to tell her story at the same time she wants distance from it, but that left me unable to understand her. She prefers stoicism to warmth, observation to understanding.
In 1980 when Rapp was chosen as a poster child, I was working at a university, in an office that served disabled students. My supervisor had been a poster child, as one of the last kids to contract polio of that generation. If you had asked me, I would have said that the "poster child" era had died out years before 1980; certainly I never saw one of those guilt-inducing "look at the cute little unfortunate child" posters supporting the March of Dimes. In fact, I don't recall seeing any after the 1960s. And I find I have to say again, "maybe things were different in Wyoming?" Certainly, the program had expanded from fundraising to fight the scourge of polio to fighting all birth defects and the March of Dimes still exists today in that capacity.
Rapp, who was clearly raised to be as "normal" as possible, begins her story with an incident as a Fulbright scholar in Korea, when her artificial leg breaks. She's been told that Koreans mostly hide their disabled people away. Rapp reports that she'd never really learned how her leg worked, so she went to this country without any resources or even the smallest understanding of what to do if things don't work. She's in major denial that there might be something different about her. Wanting to prove she's just like everyone else has been her life's goal. Over and over, she insists on being "just one of the girls" and wanting to prove she was perfect and superior. ("I might have had a disability, but I knew that I was smarter than Rita, and I felt it was crucial to emphasize this important attribute.") It seems to occur to her that life goes on when you're neither pretty nor perfect or to question that value. Again, this felt like the Miss America, "Mrs. degree," 1950s; not the United States of the 1960s and 70s, where so much had changed.
This whole story doesn't belong in the world I knew, and it's disconcerting, even baffling to me. It's an interesting story, but comes out of the 1950s and 60s before "crippled children's hospitals" became "children's hospitals" (or medical centers), before "handicapped" turned into "disabled" and disability rights became a standard.
And make no mistake, there was a movement happening while Emily Rapp was dealing with an older mindset, fighting her extreme self-consciousness which never seemed to go away. She is so invested in her perfect image, finally acknowledging that her life goal was to be "fully invested in the lie that I was able-bodied." She never accepted the reality of her disability, although toward the end of the book, she takes steps to deal with this, meeting with other disabled women. However, that can't be weighed against what she's lived to that point. For over 200 pages, "am I desirable? Can I hide this?" controlled her existence, her thinking. It came too late for me to make sense of this story and the time warp it felt like it existed in. | June 2007
Andi Shechter has been a publicist, chat host, interviewer, convention-planner, essayist and reviewer. She lives in Seattle with far too many books, an old-but-cute purple computer, not enough soft toys (including a small but select hedgehog and gorilla collection), many figure skating videotapes and an esoteric collection of hot sauces. There's a Hugo Award on her mantelpiece which belongs to her partner, cartoonist and artist Stu Shiffman.