This was a joke told to me by my uncle:
A guy walks into his local bar and is hit immediately by a dreadful smell, which isn't usually there.
"What's that smell?" he asked the bartender in disgust. A stanger; a smallish, skinnyish, unremarkable looking man, raised his hand apologetically: "That's from me." he said. The stranger then went on to explain that he was with the traveling circus that had just rolled into town, and his job was elephant keeper. The elephant, who didn't travel well, permanently had a dodgy digestion. Every morning, one of his tasks was to give it an enema. "you never get out of the way in time", he said apologetically (there is a lot more repulsive detailing of the man's job in my uncle's version of the joke, but you get the idea).
The local man was shocked. "You have to do this every day? The man nodded "Sometimes twice a day". "But that's terrible!" exclaimed said the local man, utterly horrified. "Why don't you find a better job?"
Now it was the the stranger's turn to looked horrified.
"WHAT....? And leave showbusiness..?"
This post is in response to Dave Hingsburger's post on circus freaks. Because as my elephant story highlights, you don't have to look like a freak to join the circus, but you might get a better job there if you do.
I have only seen the 1932 movie "Freaks" once, when I was a child (and it freaked me out then), but I have subsequently become kid of fascinated by it, particularly it's social impact, which had actually started before the movie: Some people had started to complain about the sideshows and their exploitation of people with differences, so many just shut down, ruining the livelihood of the performers who worked there.
The cast of the movie "Freaks".
Years ago, it was not considered demeaning to work as a freak in a circus or sideshow. It was an honest living and many of the people above made a good income and supported families. Yes, there was terrible mistreatment and exploitation of some individuals by ruthless handlers (isn't there always?). However, there was also a community, friends, a sense of acceptance and belonging that came from being in a freak show that they would not have gotten in Suburbia. And -let's face it:
It was showbiz.
When the sideshows closed, many of these performers, who had visible disabilities and differences and were then left to try and fend for themselves with no skills and no community to support them.
It is quite sad.
The late Sandy Allen, who was officially the tallest woman in the world until her death last August, is one of my personal heroes. I remember seeing something about her on the telly, and it mentioned that at one point in her life, she had a job as a living exhibit in the Guinness Museum of Records in Niagara Falls, Canada, as the world's tallest woman, where she sat behind a desk and spoke to people, educating them about her differences and similarities and about the importance of being kind to people who are different. Ultimately, -although it was the Guinness Museum, how different is that job than working in a sideshow? The main difference is that there were probably more laughs to be had in the sideshow. And funnel cakes.
The quality of this photo is not the best, but it is one of my favorite pictures of Sandy Allen, who stopped apologizing for her height and embraced it.
There is a big difference between having a visible disability or (for want of a better word) deformity, and having an invisible one. I have learned this lesson hard as the mother of kids with invisible disabilities. Too often their differences are attributed to parenting or behavioral issues, because they look like everyone else.
To have a visible difference is a constant reminder to everyone that you are different, and people often -for better or worse- treat you accordingly. Even when people try not to treat you differently, they still do it; -the deliberate 'not looking' thing they do or the sidelong glances. I look the same as everyone else, so I only really experienced this for myself when I was heavily pregnant and standing in a New York City subway car; how all those AB men in the seats would suddenly and pointedly fail to see me. There is now a blog dedicated to ignorant subway riders. It's great.
The advantage of having an invisible disability is that you can often pass for normal. This can be a disadvantage, too of course. I carry my cane all the time, and it does serve a a useful visual reminder to others that it is not ok to push past me or let doors swing back in my face (as it that were OK under any circumstances. It's not, but many people just behave that way)/
So there I was, researching sideshows and I came across this picture. The man, who is identified as Nels Nelson, is stretching out the skin of his face and he clearly has Ehlers-Danlos Syndrome.
I say "clearly" because skin that stretchy is a hallmark of the condition, although not everyone with EDS has it (I don't -in case you are wondering. My skin is stretchy, but not like that.)
In a way, folk like Mr Nelson, who probably could not have worked a "normal" job because of joint pain issues, had the best of both worlds: He had the income and community of the circus/sideshow -providing he wasn't exploited. Like the elephant keeper, in my uncle's joke, he was still "in showbiz" and yet, unlike some of his colleagues, he could still go out in the town and blend reasonably well.
And so I got to thinking about Ehlers-Danlos Syndrome and the circus:
The two most obvious differences in people with Ehlers-Danlos Syndrome is hypermobility of the joints and stretchy skin. Many acrobats, and probably all contortionists more than likely have EDS or a similar condition of hypermobility.
It is recognized in the acrobatic schools of China, where there are many hypermobile people (it's genetic and a dominant gene) and a strong tradition of acrobats, that the performing life of most acrobats is short -the joint pain and arthritis usually becomes unbearable by the time the acrobat is in their mid-to-late twenties.
...unless they happen to be this guy, of course. Wang Jiangsheng is 83 years old. He reminds me a little of me great-uncle Seamus, except Seamus was 78 and used to put both his feet behind his head. it was his party piece. ...but I digress.
I thought the solution that Mr Nelson, and more recently Garry Turner, who is probably the most famous person with EDS who is "out" about his condition, well he should be, he is famous because of it (Michael Phelps is -in my opinion- the most famous person who has Ehlers-Danlos Syndrome and has chosen to keep that fact in the closet) is that -unlike the acrobats, they found a way to exploit their condition without excerbating it. Repeated stretching and contorting will more than likely lead to The Pain of EDS, which is very nasty and difficult to manage. Of course many of us don't stretch and contort and we get The Pain anyway. We're just unlucky.
Now, I don't know if Nels Nelson had The Pain that is usually associated with EDS. Garry Turner has come out publicly and said that he does have it and he takes very powerful drugs to manage it; as most EDS-ers must.
Many people with EDS don't like Garry Turner. They think he paints a false picture of the condition, that people think we can all do stuff like this, which -of course, we can't. Garry officially holds the world record for stretchiest skin. His skin is ridiculous, even by EDS standards.
There are many people out there who work as acrobats or contortionists and probably have EDS but they don't know they have it, don't care they have it or don't care to know if they have it or not. However they make a living by exploiting their EDS. Most don't (can't) do it the safe way, by just stretching their skin. Most exploit the other hallmark difference of EDS, hypermobility.
Now, I wold bet money that this person, or Snake Girl and indeed most performers of this ilk has EDS or similar. And if they know they have it, know the risks and dangers and are legal adults, I have no problem with them choosing to exploit it to make a living. I expect many, if they were informed and educated about EDS would still choose to stretch and perform, either because they like the attention (showbiz!), or could not make a similar income any other way. Snake Girl supports her entire extended family back in South Africa. I hope they remember that if she ever becomes disabled by EDS.
The advantage of EDS is that you can turn the freakishness off. It can be an invisible disability, expecially when one is young and using no assistive devices. When this young lady puts both feet on the ground, she will look like any other person.
I wonder if it is a sign of ...something, but freak shows, side shows and other strange and unusual acts and oddities are making a comeback. Garry Turner aside, most of the acts don't feature people with deformities who are there just to be gawped at. Most of these acts feature performances. Of course of of the performances involve people hammering nails into themselves and picking up heavy objects by attaching them to their nipple rings. ....sigh.
...while Lobster Boy's daughter, who comes from a long line of carnival performers, is unemployed and misses the limelight.
Who are the real freaks?
The people who pay money to see these shows, that's who. That was always the case. Johnny Eck, once famously said (after his retirement from showbiz) ""If I want to see freaks, I can just look out the window."