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.