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Rebeca, Me and the Freak Show
Whever the issue of disability and freak shows comes up, I draw into myself. I wonder how many of my brothers and sisters in the disability rights movement would be appalled at my views?
IT ALREADY WAS BECOMING a not-great day...beginning with the pop-the-fat-gal-out-of-the-automatic-recliner chair pooping out, in more ways than one. The mechanism that does the lift-the-legs-first-then-the-butt job broke sometime during the evening. And why, the millions of people reading this ask, was I sleeping in the recliner overnight? Simple: Because in in the past 3 weeks, I have lost most of my personal assistants. Since I can't get out of my hospital bed without assistants, the oversized recliner becomes my sleepytime device of choice. When it works, that is. So now I can't get out of it, either -- so I have to wait for morning, and the good grace of an assistant to pull me out of the dang thang. Morning arrives and -- guess what? -- a no-show from the assistant. Between the time she was supposed to arrive and the time someone actually got there, Nature called, and gave the idea of a pooped-out recliner a whole new meaning. In the middle of all this, I got a phone call from Holly, pca extraordinaire, who although she works very part time, has been trying very hard to fill in as much as she can while I get thru pca crisis number 909. So as I am examining my dilema, there appears the singsongy voice of Holly on the speaker phone: "I can work for you this morning if you like." OH GAWD, YES! Stuck in "recline," I pull out a newspaper which is within arm's reach and begin to read about the child Rebeca, who has died after surgery to remove a second head. I am saddened by her death, and glad there are no pictures in the newspaper. They would have been more than I want to process just now. Finally, after my heroine Holly arrives, pulls me out of the recliner and helps me clean up, I go online. Someone has given me a link to more about tiny Rebeca. Like it or not, this time I see the pictures. The description "child with two heads" seems more apt than "conjoined twin" but then, who defines what makes one a separate human being? The pictures of baby Rebecca were not easy to look at. For me they brought up mental images of the "pickled babies" that traveled in carnival ten-in-one shows for half a century or more. It also brought up all the old feelings about being a carnie who also could have been, and for a time was, a sideshow act. Whever the issue of disability and freak shows comes up, I draw into myself. I wonder how many of my brothers and sisters in the disability rights movement would be appalled at my views? My guess is that the older amongst us did go to the blazing poster decorated ten-in-one shows that featured a sword swallower, a tattoed man, maybe a five-legged dog or a two-headed cow. And in more recent times, EEKA the Snake Woman and the real or created abnomalties in jars. Ten-in-one shows are what the outside world calls freak shows. They are called ten-in-ones because it's usually ten acts under one tent, and one "owner". One small ten-in-one that I know of still operates out of Florida, and in the off-season you can find the fat man, and the bearded lady, and the sword swallower living in Gibbston, the notorious living choice of many old carnies. Not only have they found community in the show itself, but also in the larger community of Gibsonton, FL. I am cognizant of the fact that the "fat man" and I are a similiar size. I am sorrowful with the knowledge that carnie culture as I knew it is gone. The small travelling shows where each game could be individually owned is being replaced by corporate ventures where the only one who makes any money are the few at the very top who own and control all the rides, games, and eating places. Gone, too, is the camraderie, the culture, the language and shared history, the opportunity to be an entepreneur, to move up in the world from nothing to something with hard work and a little bit put aside to put down on a "joint" -- a game or food trailer, originally named as such for the bending wooden "sticks" that were the frames for the canvas games and eating places. I was adopted into carnival culture at the age of 17, when I moved in with a carnie family and took care of the kids, and the house, and eventually, got my first job as EEKA the Snake Woman. It took me about a minute to figure out just why men were flocking in to see EEKA, and I, like many other naive females, quit after the first shift. Once it was seen that I was not gonna do THAT kind of work, I was offered a straight job in the "floss joint" -- the trailer where popcorn, cotton candy, and candied apples were sold. I worked off and on for twenty years, doing every job imaginable, including another small stint in the ten-in-one attached girlie show as a front dancer. Yeah guys, the women you saw dancing clothed OUTSIDE were not the ones you saw without clothes on the inside. The less "desirable" women got stuck with taking their clothes off, and those of us that were younger and not difficult to look at shook our butts outside to the tune of "Taking Care Of Business." Unlike the song, the front dancers did not take care of business, but gave the illusion they did. For the short time I did that work i was exposed to pretty much the last generation of ten-in-one show workers. At this point they were mostly performance artists, sword swallowers, tattoed people, and so on. There was also an occasional differently formed animal, like the dog with five legs. I don't even KNOW if I should be calling them "disabled." It is a confusing history we have as freaks and geeks, and I was lucky enough to be around the old timers who had traveled in the circuses in the heyday of the freak shows. I matured in carnie culture hearing about the Doll family and the more famous of the bearded women and the woman without legs from their circus co-workers and friends. Poppa, the grandfather of the family I originally worked for, had photo albums full of all the sideshow folks from the Ringling Bros/Barnum and Bailey circuses, from before the time when the games and sideshows were split off from the circuses cuz we were seen as less desirable than the "professional acts." The major thing I learned from Poppa and his photo album and stories was how much the geeks and freaks were a part of the circus culture, and how they made decent money, and were a part of a community, with families, and lovers, and kids, and mortgages. Looking at baby Rebeca, I know that if she had lived at the time of the freak show heyday, there would have at least been a warm welcoming place for her at the Table of Freak in the show business world of carnivals and circuses of yesteryear. But today's world, that's another story. We as a disabled community need to be watchful as to what is happening with the medical world and our disabled-to-the-tune-of-extreme-difference brothers and sisters. I imagine there is very little that has been researched in support services and treatments for people who are conjoined, or who have supplemental body parts. One of the news stories said that Rebeca would have died under the weight of the attatched head -- that this is why surgery was performed. Another article reported that everyone knew going in that she would probably not survive the operation. How many of us living disabled today were expected NOT to live? How many of us are seen as freaks anyway, with our poopy pants, plugged-in lungs, bags carrying intestines,. half legs and large heads? I am not so far from Rebeca. She was indeed my sister, and I know people like her and I all have the potential to return to the freak show -- me because of size due to hypothyroid disease and a heart that can't pump fluid effectively, and those like her due to having what most of us see as horrific. Beware: This sweet child was a reminder to all of us how sudden our fate may be. Should she have had surgery? Were all the alternatives looked into? Or was it the looking at her that made her death so swift? Posted Mar. 25, 2004 MaryFrances Platt, M. Ed., says, "I have been gifted with an amazing life, and find peace in revealing this part of it to the disability rights nation."WHAT DO YOU THINK of what you've just read? Click to tell us.
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