|Recent NY Times image of a Brazilian boy holding |
his microcephaly-afflicted baby brother
Here is a description of the defect:
Microcephaly bestows upon the person an abnormally small head (often only half the size of a normal head) and sloping forehead. Known as “chaus”, “rat people” or “pinheads”, the condition almost always results in mental retardation and diminished brain capacity. The cause of the condition varies. Sometimes it can be caused when a child’s mother consumes excessive alcohol*. There is no cure. [Source]
*Just to clarify: I don't touch alcohol, never did. That is definitively not at the root of C.'s problems. (I am a chocoholic so if chocolate were linked to microcephaly, we'd be on to something.)
The facts about C.'s microcephaly are that her brain stopped growing normally from the age of a few months leaving her with a technically microcephalic head circumference. Fortunately, it's only small enough for an expert to notice.
But the severe cases can be very disfiguring. My son, who often sends me reading material I wouldn't otherwise see, forwarded me this. It's the horrific story of somebody with microcephaly, dwarfism and cognitive impairment, born in the late 1800's. While we (at least I) tend to gripe endlessly about discrimination against people with disabilities, the biography of Schlitzie illustrates the utter cruelty they endured in the not-so-distant past.
Here is an excerpt from an article about him:
As one of the greatest circus sideshow performers in history, it is odd that many details of Schlitzie’s early life are unclear. Stories passed down from his circus owners indicate that Schlitzie was born in Sante Fe, New Mexico (some say he was bon in Yucatan, Mexico) to a very wealthy family. He had a sister named Atheila who also suffered from microcephaly. The parents were ashamed of the children and kept them hidden away. As was common in the early 1900’s, when the opportunity presented itself, the family sold Schlitize and his sister to the travelling circus where he began his life as a sideshow freak.A circus sideshow owner named Pete Kortes kept Athteila to himself and passed Schlitzie to his brother George Kortes. In the course of his career Schlitzie was employed by Ringling Bros. and Barnum & Bailey Circus, Clyde Beatty Circus, Tom Mix Circus, Crafts 20 Big Shows, Foley & Burke Carnival, West Coast Shows, Vanteen & Lee Circus Sideshow, and the Dobritsch International Circus (circus freaks were often traded around and “lent” to other circuses). Schlitzie was billed as “What is it?”, “pinhead”, and “the last of the Aztecs”. He was often billed as a female only because his caretakers found it easier to change his diaper when he was dressed in a lady’s gown. Schlitzie has the mental capacity of a 3-4 year old.Schlitzie’s mental capacity offered one advantage – it made him a favorite with the fans and his caretakers. Like a 3-year-old frozen in time, each day brought new wonders to Schlitzie. His childlike exuberance, boyish innocence, and unconditional love for everyone he met, endeared him to everyone he came into contact with.In addition to sideshow work, Schlitzie made appearances in several movies. In 1932, Schlitzie was given a part in the cult classic movie, Freaks. He also made an appearance later in the year in the Island of Lost Souls (as a “manimal”) opposite Charles Laughton and Bela Lugosi. He also appeared in the 1928 movie, The Sideshow (bit role), the 1934 Tomorrow’s Children (as a vasectomy patient), and the 1941 Meet Boston Blackie).In 1936, while travelling with the Tom Mix Circus Sideshow, a chimpanzee trainer named George Surtees became Schlitzie’s legal guardian (his California Certificate of Death even lists his name as Shilze Surtees). When George passed away in the 1960’s, ownership of Schlitzie went to George’s daughter who declined to care for him. He was institutionalized in the Los Angeles County Hospital. Schlitzie spent many years in the hospital.By an odd stroke of luck, a circus sword swallower, Bill Unks, was working part time in the hospital during the off season when he recognized a sad, depressed Schlitzie. Convincing the hospital that allowing Schlitzie to be a part of the circuses sideshow world would do Schlitzie a world of good, the hospital agreed and consigned Schlitzie to Sam Kortes, Unks’ employer.Schlitzie spent his finals days living with performer friends near MacArthur Park in Los Angeles. He passed away at the age of 81 at Fountain View Convalescent Home in Los Angeles from bronchial pneumonia. Schlitzie was interred at Queen Of Heaven Cemetery, Rowland Heights, California, Plot: Grave 69 – Tier 21 – Section E. The grave went unmarked for several years until members of the internet message board community at Find a Death raised funds to have the grave appropriately marked.
A circus performer who worked with him in the 1960's relates that:
It would break my heart – and piss me off – to see him abused by so-called “normal people” in the audience. They taunted him mercilessly and threw bottles and lit cigarettes at him...
When [the movie] Freaks premiered in 1932, cinema audiences were scandalized by the appearance of sideshow performers. The United Kingdom banned the film for thirty years. The film was a financial failure, and Browning, although he went on to make several more films for MGM, retired in 1940.
Which is rather puzzling in light of this:
Apparently a documentary entitled Schlitzie: One of Us is in the works and scheduled for release this year. I'll be watching out for it.
On a personal note...
On a personal note...
I learned this week that I must have a hysterectomy due to a severely prolapsed uterus. After reading up on what that entails, it's clear I won't be able to care for C. - at least not the way I do now - for several weeks. And then there is the hospital stay itself to ponder. Best case scenario is three days. Who will care for C. all that time?! Well, they didn't arbitrarily name it a hysterectomy - I'm having plenty of hysterical melt-downs these days.
And on a more upbeat note... Here is a group of students that watched C. go through her hydro moves yesterday. While were oblivious to my camera, they gave me a perfect pose. I hope C. performed well.