Regarded As

I was in St. Louis last weekend.  The 2015 Little People of America Conference is scheduled for July of next summer in St. Louis, to coincide with the 50th Anniversary Celebrations of the St. Louis Arch. Along with the Conference Management Committee of LPA, I was in town to check out the Hotel and the surrounding area.  Before this trip, I had never spent quality time in St. Louis, and had never given much thought to the Arch.  In a way, the Arch is kind of like the Bean (or Cloud Gate) in Chicago.  It doesn't sound like much, but when it stands before you, it's pretty spectacular.  I could have spent a lot of time just staring at the Arch.

The majesty of the Arch wasn't my significant takeaway from my weekend in St. Louis.  On Saturday afternoon, as I left my hotel room to head for a meeting on the 17th Floor, one floor above mine, I ran into two young women.  One of the women, when she saw me, said, "I'd love to take you home." Perhaps that sounds flattering but she didn't mean it in a 'you are very sexy' kind of way. She meant it the way a person browsing an animal shelter might want to take home a cute dachshund. I wasn't too amused. I let the two women pass then followed them to the elevator.  I stared at the woman who made the comment until she got in the elevator going down.  As the door was closing, she told me, "You should smile more."

Later I was making my way over near the baseball stadium where I was meeting a group for dinner. On my way, I passed this cool looking blue fountain.  One person in my group told me the water was blue in order to discourage people from swimming in it.  Anyway, I wanted a picture of the blue fountain with the Arch in background.  I made my way to the opposite side of the fountain in order to put the sun behind me.  A number of people and small groups were hanging around the area, including a group of three young people, two women and one man.  One of the young women saw me and then had a pretend panic attack.  She screamed and ran away from the fountain and hid behind a stone structure.  I call these pretend panic attacks because whenever people act as if they are freaked out by dwarfs they spend a lot of time giggling about it.

Today, I thought about both of the run-ins that I had in St. Louis. I thought about them because the media and popular culture spend a lot of time reminding people with dwarfism, and in general people with disabilities, that they are deformed, that they have defects, that they have disorders, and that they suffer from this or that.  But in reality, most people with disabilities, and most people with dwarfism, are pretty average.  We go about our ho hum lives just trying to get by, getting an education, finding a job, finding a place to live, and if we are lucky, finding a little bit of love and some happiness.   The biggest difference between people with dwarfism and others isn't who we are and our lives, but rather the lens through which people without dwarfism view and treat us.  We are regarded as being much different than we actually are. That's why popular culture portrays us differently -- and many people buy into what popular culture sells.

The way other people regard us often causes us many more problems than the dwarfism does.  That must be why dwarfism was included in the original Americans with Disabilities Act under the "regarded as" protections, protections which I believe were reinforced and strengthened with the ADA Amendments Act of 2008.

I am using this image because I like Peter Dinklage
and I like this picture and I couldn't find the correct meme.

In the end, the ADA doesn't do me much good if I come face to face with people suffering from a dwarf phobia when I am minding my own business around St. Louis.  But I am happy to know the law is there.  It's a nice reminder, that, as Peter Dinklage evidently said in some meme on Facebook that I can't find now, "it's not my problem."

Beyond the Pale -- Reading books with random dwarfism passages

I wish I was a voracious reader.  I'm jealous of people who say they read whenever they have a chance.  I'm jealous of the people who say they spent their childhoods with their nose between the pages of a book. I'm jealous because books have had a deep impact on my life.  I still remember reading Watership Down on the couch at my aunt and uncle's house when I was a child.  I remember reading Absalom, Absalom in my parent's living room during winter break my sophomore year of college.  I remember crying on a flight back from Columbus, Ohio two years ago as I finished Salvage the Bones.  Some books resonate, and will be felt for years to come.  The problem is, I can only read 20 minutes at a time, at best.  I read on the train coming from or going to work or I read in bed.  It's not that my days are too busy to find other times to read.  But plenty of times I could have read, I've flipped on the television instead.  And when I do read, I grow tired less than half an hour after I pick up the book.

Though I'm not the strong reader I wish I was, I enjoy reading about books.  One of my favorite things to do is to read the "Briefly Noted" section of The New Yorker, four book reviews that are each less than 200 words.   Every week, I look at the reviews and make a note of any book that I'd like to read.  Every few months, I'll order a group of books online.  Last week, I received three in the mail.  The first one I started to read is Andrew's Brain, by E.L. Doctorow.  I've never read anything by Doctorow, but he is well-known for Billy Bathgate, Ragtime and others.  Andrew's Brain follows this professor of brain science.  The narrative centers around the professor sharing his life story with a second person. It's unclear who exactly the professor is talking to, but it could be a doctor of some sort.  Last week, on Thursday or Friday morning, I pulled the book from my bag to read a few pages during the train ride to work.  I was on page 67.  At that point in the book, the main character is relaying a story about the time he met the parents of his girlfriend. The author writes, "They were young looking given they were retirees.  It's hard to tell with Diminutives.  Diminutives?  You don't want to patronize them. "Midgets" is beyond the pale.

From out of nowhere, two short statured characters were introduced.  Though using the word diminutive was very much in character for the narrator, I struggled a little bit with the language and sat staring at the page until it was time for me to leave the train.  Later that day, I told my wife about it.  When I said diminutive out loud, we both laughed about it because the word is rather silly, and when I said the word aloud, it became more clear that the word said more about the narrator than it did about the dwarfs.  Laughing allowed me not to take the language so seriously and I was able to pick up the book again either that night or the next night. 

I tried to appreciate the context of the narrator. Nevertheless, I struggled through the section that included the diminutive retirees.  Though the narrator recognizes that "'midgets' is beyond the pale," the word is used fairly often through the section.  Also, at no point during the section does the narrator frame the two short-statured characters within the realm of everyday life, within the realm of the typical.  The narrator is unable to interpret the characters except through a frame of reference that is defined by dwarfism.  Because the narrator can not accept dwarfism as part of the everyday environment in which he lives, everything about the parents is other worldly and they are never portrayed as regular people who happen to be dwarfs.  Instead, they are portrayed as people who are very different who live in a very different world. 

Thinking about the section, I try to understand that the story is written from the narrator's point of view.  And the narrator is someone whose own reality is very different and skewed from the reality in which I wanted him to place the two dwarf characters.  Though I tell myself this, the fact is the picture the author created of the dwarfs could just as easily reflect the ignorance that still exists about dwarfism in broader society.  The fact is, the picture in the book could easily reflect the author's own ignorance.  After all, almost every time one reads about or sees a dwarf in popular culture, the dwarfism is often sensationalized and the dwarfism often defines the individual. 

Whatever the case may be, I will keep reading.  I will finish the book.  I will keep buying books and will do what I can to some day become a voracious reader.  I just hope that in future books, when I come across random passages about dwarfs, the picture is more flattering.