Thursday, September 25, 2014

There is much in life, and in death, against which to protest

Not Dead Yet Protesters 
Last Thursday, September 18, was quite the day.  Through my job at Access Living, I had signed up to work the media for a protest organized by Not Dead Yet.  Not Dead Yet, along with other groups from Canada and the United States, including Access Living, were protesting against a three-day conference of a right to die and euthanasia conference, which was organized by a group called The Final Exit Network.  Assisted Suicide is a difficult issue that even divides members of the disability community. Typically, the philosophy of independent living, followed by Access Living and other groups in disability rights, is about choices.  People with disabilities should choose for themselves when it comes to decisions that impact their lives.  If one followed that premise, assisted suicide should be up to the individual.  Yet, Not Dead Yet, Access Living, and other groups advocate to criminalize assisted suicide. The reason is, with the state of health care for low-income people with disabilities, real choice doesn't exist when it comes to assisted suicide.  Not Dead Yet can make the case that many people with non-terminal illnesses have been funneled toward assisted suicide with messages like, "you don't want to be a burden on your family or society," or "as you become more disabled, you will have no worthy quality of life."  Overwhelmed with this messaging, people with disabilities may feel like they have no option but to go through with assisted suicide.  In a world with true choice, people with disabilities would be given quality support options that would enable them to adjust to progressive disability and maintain a quality of life.  Until that world takes shape, groups like Not Dead Yet will protest against assisted suicide.

It was a rather frustrating day of media, because only one outlet showed up to cover the protest.  That was WBBM Radio.  Here is a story from WBBM about the event.  I spent my day emailing the media and calling them, and asking others to call the media, encouraging them to cover the event.  The lack of turn out was even more frustrating considering I could see the NBC Tower from where I stood on the street, and I knew the Tribune building was just on the other side of the NBC Tower.

When LPA protested against the scene 
in the Wolf of Wall Street, we were 
sometimes met with the argument, 
"The characters in the movie are deplorable,
no one would imitate them."  They were wrong. 
In the middle of the afternoon, news broke over Facebook that a place in Providence, Rhode Island called the Colosseum was hosting a dwarf tossing event that night.  The Colosseum called the event, "The Wolf of Pine Street," a play off of The Wolf of Wall Street, a 2013 movie that opened with a dwarf tossing scene.  The Colosseum even created a poster for the event that mimicked the promotional poster for the movie.

Social Media immediately caught fire.  All kinds of people posted on Facebook, chiming in with ideas of what to do, expressing their disgust that such an event would happen, and urging people to contact the Colosseum.  Indeed, many people did start calling and emailing the Colosseum.  Typically, we don't hear back from places that host events that degrade and threaten the humanity of people with dwarfism.  But on September 18, someone from the Colosseum (one of the co-owners) actually started to call people back.  Also, unlike many other places that host disgusting dwarf events, the Colosseum person soon realized that his company had made a mistake.  Within a few hours, he took down any promotional materials that used the m-word, and then changed the event, opening it up to anyone who volunteered to be tossed, not just little people.  He called me a couple of times.  I told him to cancel the event completely.  That was the best thing to do. He said he tried, but it couldn't be done.  There were too many contracts and at least one of the little people at the Colosseum wanted to proceed.  (The event was originally going to include throwing the little people against a velcro wall.  Whatever ended up happening at the Colosseum, I don't think it included a velcro wall.  I heard that a resourceful advocate tracked down the velcro supplier and convinced it not to make the delivery.  That same resourceful advocate gave birth that night.)

Though the event happened, many in the dwarfism community feel the response was a success.  The Colosseum changed the event, issued an apology a few days later, and has offered to partner with the community to raise positive awareness about dwarfism.  Though I was disappointed the event wasn't cancelled and am disgusted that the Wolf of Wall Street has imitators, I think, one week later, I agree.  The day was a victory for the dwarfism community.

Friday, September 12, 2014

This is BS

Sometimes, as a little person, it's as if you inhabit a different world than everybody else.  The differences between the two worlds aren't because of the physical features of dwarfism but because of the differences between the place the little person presumes to take in the world, and the way in which other people perceive the place of the little person.  The two incidents in St. Louis were examples of this.  I was carrying on, minding my business, but I was not allowed to mind my own business because I was treated:

1.  First, as an animal or a toy who could be acquired and taken home; and
2. Second, as some kind of creature who could cause harm and is feared.

Another example popped up this week.  On Saturday, September 13, the Business Standard ran an article titled "Rare surgery frees 16 year-old from Dwarfism."  I first read the article on Wednesday, after it was posted on Facebook.  The title alone is shocking.  The title seems so far from the reality of most people with dwarfism who I know that I thought the article was a joke.  In fact, when the article was posted on Facebook, the Business Standard logo looked like the image to the left, which made me think BS actually implied bull shit, and that the article was some sort of satire.

Alas, the article was not a joke.  The "rare surgery" referred to was limb lengthening.  The 16-year old freed from the shackles of dwarfism gained 12 inches as a result of the procedure, which isn't really so rare, especially in Europe.  He went from three feet in height to four feet in height.  I happen to be about four feet two, a couple of inches taller than the 16-year-old.  Even though I have two inches on the boy who is now dwarfism free, I still suffer from the curse of dwarfism, as the article delicately refers to my diagnosis of achondroplasia.

Now that the 16-year is dwarfism free, I wish him the best.  I hope the doctors who lifted the curse continue their work, so that others may also someday be free.

I probably shouldn't make light of it all.  For all I know, the experiences of the 16 year old boy are much different than mine, and for all I know his life may improve.  Nevertheless, many people who are part of Little People of America, and many people who are part of the dwarfism community that I know, read the story.  For the community that I am a part of, a story like this is insulting and embarrassing.  It's embarrassing and insulting because our lives aren't going to improve if we gain 12 inches.  Within the context of dwarfism, our lives will improve when we are freed from the curse of stigma.  The Business Standard and this article did nothing but build upon the stigma that already exists.

Wednesday, September 10, 2014

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."