Monday, December 29, 2014

People and the things that they do

John Young is a friend of mine from Facebook.  Over the Christmas Holiday, he visited his home town in Canada.  While in Canada, he had to deal with people trying to take his picture at least twice. The incidents happened while he was out for a run.  John's nephew suggested that he write about what happened, which he did.  He submitted the story to local papers.  I am not sure if the piece was published, but John also posted the story on his blog.

I also went away for the Christmas Holiday.  I went to visit my in-laws, who live outside of a small town in North Central New Jersey.  Like John, I went jogging while I was away.  I went twice, fairly early in the morning.  Once on Christmas Day and once on December 27.  I heard about John and the pictures between my first and second run.  Knowing what had happened to John, I was hyper aware of anyone around me during the second run.  Thankfully, nothing happened.  The most attention I generated was not from people but rather from two big yellow dogs that lived on the property across the road from my in-laws.  They started to bark at me as soon as I turned from the driveway on to the two-lane asphalt road.  They followed me to the edge of the property line and then continued barking until I was out of sight.  

I really enjoy my visits to New Jersey.  But the fact that nothing happened to me while I was running is not a reflection of North Central New Jersey humanity compared to Orangeville, Ontario, where John Young visited.  I have no idea how many people John saw during his runs, but, between my two runs, I saw a total of two cars on the road, and four other people.  Each of the other people I saw was also running.  Two cars and four people is not a large enough sample size to reach the conclusion that the roads of Bernardsville, New Jersey are cooler than Orangeville, Ontario.

I thought about John's story again this morning. Back in Chicago, I took another run.  I followed a route I often take; a route on which I've never had a problem.  But typically, if I run outside in Chicago, I run on Saturday or Sunday mornings.  I don't know if I've ever run outside on Monday during the morning commute.  Running along sidewalks this morning, I was forced to navigate several cars that zoomed into intersections, came to a rolling stop over pedestrian crossings, and waited for a break in the traffic before making a right hand turn.  But I was unable to avoid the driver of a gray sport utility vehicle that, while heading north, made a u-turn over a median that divided the north and southbound lanes.  Now moving south, the driver, with one hand on the steering wheel and one hand holding a phone, took my picture.

In the hours that followed my run, I thought about many things.  I thought about John and all the other people with dwarfism to which this type of thing happens.  No one should have to suffer this indignity, but it's nice to be in the company of good people.  I thought about the driver.  I wondered if the driver mistook me for Peter Dinklage.  Why else would a driver go at least two u-turns out of his or her way to get my picture?  I thought about the mother from Australia who murdered her six-month old daughter because she believed her baby had dwarfism.  Developing strategies that protect the community from infanticide feels much more urgent than strategies to deal with bootleg pictures of dwarfs.  

Finally, I thought, what does it matter?  By all measures, the dwarfism community builds more awareness every year.  As we build awareness, we have more resources to implement the right to participate in our communities on a level playing field.  We have more resources to protect ourselves from discrimination, and to portray ourselves as people who embrace our dwarfism but are not defined by our dwarfism.  Though we get stronger, we will most likely always have to deal with individuals who may or may not be shitty people but who sometimes do shitty things.  The shitty things probably won't ever go away.  That's why I ask myself, what does it matter how I respond to the shitty thing perpetrated by the driver of the gray sport utility vehicle?  That's why I tell myself, focus on the big picture.

But it does matter.  It matters because the shitty things create a hostile environment for the person with dwarfism.  It matters because the shitty things interrupt the course of our days.  Because it matters, I am grateful for people like John and for scores of other people with dwarfism who don't tolerate anyone that interrupts the course of their days.  Because of them and what they do, the big picture is changing.



 

Sunday, December 14, 2014

M-Word Backlash


Years ago, after former Chicago Bears Defensive Coordinator went to the Carolina Panthers as Head Coach, he referred to Rex Grossman, the Bear's quarterback, as a midget. The alleged comment received a lot of media attention, and the comment was recognized as an insult. I wrote a response to the Chicago Sun-Times, which published the letter. As far as I remember though, and from all that I can find now on the internet, non of the media attention referenced the impact of the comment on the dwarfism community.

This year, another NFL Football Coach used the m-word. Again, it was used in reference to a quarterback. Marvin Lewis is the coach for the Cincinnati Bengals. The Bengals play the Cleveland Browns today, (December 14). Earlier this week, when asked how the team would prepare for the Browns' quarterback, Lewis said, "You've got to go defend the offense. You don't defend the player, particularly a midget."

At least seven years passed between the time Rivera made his comment, and when Lewis used the m-word. In that time, many efforts have been made to raise awareness about dwarfism and language. Little People of America launched a Dwarfism Awareness Month. More reality programs that feature the lives of everyday dwarfs have been introduced on television. Peter Dinklage has won an Emmy and a Golden Globe.


If the response to Lewis' m-word comment is any indication, that awareness has made a difference. There was immediate reaction to Lewis' use of the m-word. With the internet and with social media, the speed of the response is not a surprise. What is a surprise, at least in my opinion, is the content of the response. Some critics commented about not just the impact that the slur would have on Manziel, the Cleveland Quarterback, and the Browns. They also pointed out the impact the slur would have on the dwarfism community.

Over Twitter, Michael David Smith, the Managing Editor of Pro Football Talk, wrote, "Many people of short stature consider "midget" a slur. Marvin Lewis shouldn't say it. Neither should the rest of us." On the ESPN Radio Show, "Highly Questionable," someone said, "if the public does not perceive the M-word as a slur, it's because they don't know any lps."

Smith didn't stop with his original comment. Soon after he used the m-word, Lewis issued an apology. Primarily, Lewis apologized to Johnny Manziel. Smith didn't think the apology covered everyone. He expected more. In a column titled, "Marvin Lewis' apology is Lacking," Smith wrote, "Lewis failed to mention people of short stature, the people who, by extension, Lewis was really insulting."

Soon enough, Lewis issued a second apology. In that apology, he extended his regret to "all others I have offended." 'All others' is kind of vague, but earlier in his comments, Lewis said that he had studied the Little People of America website. With that in mind, it's easy to infer that Lewis intended to include people with dwarfism in his apology. After the second statement from Lewis, several other outlets mentioned the Little People of America website, including the New York Times.

All in all, a week that started with a high profile football coach using the mword ended up all right for the dwarfism community. The media rallied in support of the community, and that same coach, not to mention one of the most high profile newspapers in the world, mentioned the LPA Website. If I were to give out a game ball, it would go to Michael David Smith. He was out in front of the pack, holding Lewis accountable when the coach made the disparaging remark, and Smith didn't let up until Lewis apologized to people with dwarfism.

To Smith -- Many Thanks.

Sunday, November 30, 2014

Words that Bind

Over Thanksgiving break, I finished the book Men We Reaped, a memoir by Jesmym Ward.  Over a span of several years, from 2000 to 2004, five men Ward knew, including her brother, died.  The chapters of the book follow the deaths of all five men, in reverse chronological order, and retrace the steps of Ward's life growing up in southern Mississippi.  The two timelines converge on the death of Ward's brother in 2000.  Her brother Joshua's death was the first of the five.  The memoir is about five individuals, and the grief that follows in the wake of each death, and the book is about systemic racism and poverty that is endemic to African Americans in southern Mississippi and that harnesses the men in Ward's life on a path toward death.

Men We Reaped was the second book by Ward that I have read in the past three years.  I finished Salvage the Bones in September of 2012.  I finished the book on a plane between Columbus, Ohio and Chicago.  While I read Salvage the Bones, I struggled to make a connection.  But on the plane, as I read the final scenes, which climax as Hurricane Katrina blasts the Mississippi coast, I lost my breath and started to cry.

It takes me about two months to read a book.  That means, I've probably read 13 other books since September of 2012.  No other book has stayed with me like Salvage the Bones.

Men We Reaped had a similar impact.  From page one, I enjoyed the book, but not the same way other readers     did.  On Twitter, I read about a woman who didn't put the book down after starting on page one, reading the entire book in 12 hours.  I put the book down every night. For me, the book followed the typical two month pattern. Eventually, the book bowled me over, and left an impression I can't shake.  The impression is particularly deep because of what is happening in Ferguson, Missouri, and the failure of the Grand Jury to indict the police officer who shot and killed Michael Brown, the unarmed African American teenager.

For me, the book transformed on page 187, when Ward, an underclassmen at a high school where she is one of barely a handful of black students, stands up to a group of male upperclassmen.  Out of earshot, the boys had made a joke about lynching black people.  Ward, though she didn't hear what they said, knows they are laughing at her.
       "What did you say," she asks them.
       One of the boys laughed, saying, "you know what we do to your kind."
       "No I don't," Ward said.
       The group laughed at her.
       At this point, Ward knows about what they are joking.  But she says to them, "You ain't going to do shit to me."
       The demeanor within the group of boys changed.  They stopped laughing.  They changed their posses, folding their arms, positioning themselves defensively.  Ward, hiding fear, said, "you ain't going to do nothing."
      Moments later the group of boys moved on down the hall.

As a person with dwarfism, my experience is different from that of a poor African American girl going to school with mostly white people who are wealthy and racist.  But as a person who has faced bigotry, I can relate to the experience of facing a hostile crowd and staring it down, picking one person in the crowd and focusing on that person, daring that person to translate their verbal assault into physical action.

Ward spoke at the Harold Washington Library in Chicago on
November 1. 
I know my experience as a dwarf is different from that of an African American because I've never been hurt because of my physical difference the way so many people have been hurt and killed because of the color of their skin.  Perhaps, I feel confident that I never will be hurt, and that is why I can sometimes challenge those who verbally assault me.  I am sure many other people can't do that.  They probably would be physically hurt.  Ward knew she was risking her safety.

Though our experiences may be different, after page 187 in Men Who Reaped, I felt connected to Ward in a small way.  Because of that, Ward has become my favorite writer.  Though I am devastated for her because of all that she has lost, I am grateful for what she has been able to share.


Sunday, October 19, 2014

The Challenges of Awareness Months

Barbara Brotman published a column in the Chicago Tribune on October 6 titled, "Why some women with breast cancer dread October."  From professional football players wearing pink cleats, to billboards with pink ribbons, October is dominated by marketing around Breast Cancer Awareness Month.  With the marketing come stories about women who have battled through and survived cancer, and individuals pitching for more support of research in order to find a cure for breast cancer. In her column, Brotman wrote about women with metastatic breast cancer -- "cancer that has spread and is incurable."  For many of these individuals, the message Breast Cancer Awareness Month, a message of triumph and overcoming, doesn't resonate.  Brotman quoted a woman with metastatic cancer in her piece.  The woman said, "I'm happy, of course, for people who are doing well and have finished treatment, but I don't feel like I'm a part of that."

Though breast cancer awareness is by far the most well-known cause, other campaigns use October as a month to raise awareness.  Also, similar to women with incurable cancer, other pockets of people wince during October when the communities they are a part of trumpet awareness.  This includes Dwarfism Awareness Month. Dwarfism Awareness Month is much different than Breast Cancer Awareness Month.  When the ubiquitous pink throughout October represent the search for a cure, the green bracelets of Dwarfism Awareness Month have nothing to do with a cure.  Dwarfism Awareness is all about sending a message that people with dwarfism have lives just like every body else.  As such, people of short stature should not be treated as curiousities or the subject of study, but should be given the space and opportunity to live life like everybody else.

Little People of America launched Dwarfism Awareness Month in 2009. I served as Vice President of Public Relations for LPA at the time.  Soon after LPA kicked off Dwarfism Awareness Month for the first time, I received an email from a woman who wrote that Billy Barty, the founder of LPA, would turn over in his grave at the thought of Dwarfism Awareness Month.  Last year, I saw a Facebook post from a woman with dwarfism, who intimated that with October approaching, it was time to crawl under a rock and hide for a month.  I don't know what either of the people were thinking, but I assume they thought that people with dwarfism already receive a lot of attention, often unasked for attention, why dedicate an entire month to drawing more attention to ourselves?

This year, before the calendar hit October 10, I read more posts on Facebook from people frustrated with Dwarfism Awareness Month.  They seemed to agree in theory with the intent behind the campaign, but felt that too many people used the campaign to send the wrong message. They were concerned that messages were shared that framed people with dwarfism as cute and heroic, and that embellished the cliche, "they may be small, but they have hearts as big as anyone in the room." Though well intended these messages reinforce the gap between people with dwarfism and the rest of the community, and fail to convey that most people with dwarfism just want to live regular lives.  After all, no one with a jumbo size heart, literal or figurative, can lead a regular life.

I agree that some messages sent during Dwarfism Awareness Month might send the wrong message. But LPA, and the dwarfism community, must continue promoting the campaign.   We must continue to show the broader community that people with dwarfism are proud of who we are as people with disabilities, and people of short stature, and to raise awareness about the barriers to opportunity and equality we face so that people in the broader community can be a part of the effort to confront those barriers.

Monday, October 6, 2014

Dwarfism Awareness Month 2014-- Week 1

Wednesday, October 1 marked the first day of Dwarfism Awareness Month for 2014.  Little People of America launched Dwarfism Awareness Month in 2009 to reach out to new communities about dwarfism and spread information about language, etiquette and the history of people with dwarfism.

The Access Living group at Bessie Rhodes school in Skokie,
after three hours of presentations to more than 300 students. 
I started the month on the right foot, taking the train up to Skokie, Illinois, where colleagues and I presented to more than 300 grade school students and middle school students about disability.  Dwarfism wasn't the focus of the day, but I weaved in to the presentations information about dwarfism.  I was handing out dwarfism awareness bracelets and "Disability Pride" bracelets.  One young student approached me after I had spoken to her group. She asked for a bracelet.  I gave her a choice between the Dwarfism Awareness Bracelet and the Disability Pride Bracelet. She took the disability pride one, explaining the dwarfism falls under the umbrella of disability, so in a sense, by taking the disability pride one, she covered both bases. I liked her explanation.

Throughout the month, I am also producing short videos that answer questions about dwarfism.  I've produced two in the first six days.  The first answers the question, "How to people with dwarfism drive?"  

The second answers the questions, "Do people with dwarfism consider themselves disabled?"



I am looking forward to improving my video production skills, and taking more questions, throughout the month.

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."

Monday, August 4, 2014

Beyond the Pale -- Reading books with random dwarfism passages

picture of young boy lying in grass reading a book
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.

picture of book cover for Andrew's Brain by E.L. Doctorow
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. 

Sunday, July 27, 2014

Questions?

In 2001, I was in Toronto for the Little People of America Conference.  One day, I was wandering the streets of Toronto alone, looking for a hot dog vendor.  A friend from Chicago had told me that Toronto was one of the only places to find hot dog vendors who sold tofu dogs. The streets of downtown Toronto were busy.  Of the many people on the street, I passed a woman on a bicycle.  Her young son sat in a child's seat on the back of the bike.  When the child saw me, he exploded into a burst of activity, pointing at me, grabbing for his mother, throwing out questions.  The woman quickly passed, the boy turning to watch me as his mother peddled away.  A few minutes later, the woman reappeared, pushing the bike up the sidewalk.  She approached me.
     
"Excuse me?" she asked.  She had an exasperated look on her face.  I stopped and looked at her.    "Would you mind talking to me son for a minute?"

My guess is that the boy didn't stop pestering his mother, asking her questions impatiently and persistently about the small man he had just seen on the street. I don't remember what I said to the boy, but I appreciated that the mother approached me.  It's better to answer the questions then to ignore them, and it's much better to answer the question then to scold a child for asking.  The hope is that, if the questions are answered, especially if the answers come straight from a little person, the child will understand that, besides height and stature, little people are fairly typical.  Next time the child sees a little person on the street, he will treat the person as typical, rather than pestering a parent or treating the little person as some kind of anomaly.  The mother in Toronto probably handled her son's curiosity better than anyone else who has had a question about my stature.

Accessible Platform at Ohio Street Beach in Chicago
That was 2001, 13 years ago.  Since then, no other mother or father has approached me because of their child's curiosity.  Until last Tuesday.  I was at the beach with my wife Katie.  After swim practice with a group called Dare2Tri, I changed, then walked back to the shoreline following a platform that had been built over the sand for wheelchair access.  Walking down the path, I came face to face with a young boy who's eyes bulged when he saw me.  He didn't say anything.  He just stood there, staring.  Later, outside of a beach cafe where Katie and I had just had something to eat, the boy reappeared in front of me. He was with his mother, holding her hand. 

"Could I introduce you to my son?" the mother asked.  "He has some questions."  We all stood there for a few minutes, outside the cafe, talking. 

I can't imagine there is anything easy about parenting. I certainly am not one to give advice about parenting, because I know nothing about it.  But if I were to give advice on the subject of curious children with questions about people who look different, I would say, "Let the children ask questions."  And if at all possible, let the people who look different answer those questions.


Sunday, July 20, 2014

2014 Disability Pride Parade: Love Life, Live Green

Access Living Float in the 2014 Parade

This past Saturday, July 19, was the 11th Disability Pride Parade in Chicago.  I've been a part of most every parade in Chicago, since the inaugural parade in 2004.  In the early years, I got more involved in organizing the event.  For about four or five years, I focused on organizing the Parade Open Mic, an event held the night before the parade.  For the last two years, I wasn't involved in any way with the organizing, and only marched in the parade.

This year, I was invited to serve as the Grand Marshal. This means I got to lead the parade and say a few words at the Post Parade Celebration.  Earl Smith, a long-time volunteer for the parade, told me I had been selected to serve as the Marshal.  When he did, he informed me that I had the option of walking the parade route or riding in a convertible.  After a split second, I blurted out, "convertible."

stage in Daley Plaza Chicago, covered with tent. Performers on stage. Sign Language Interpreter standing in front of stage.
A performance at the Post Parade Celebration
It was a thrill to serve as Grand Marshal.  When I arrived at the parade line up on Saturday, Chuy, a well-known disability advocate in Chicago and a volunteer at this year's parade, kept checking in with me, asking if I needed anything.  Sometimes he'd follow me around the block as I walked around, saying hello to people and checking out the line-up.  If we came up to a group of people, he'd shout out, "Parade Marshal coming through."  He also flanked me along the parade route and would shout out "Let's hear it for Parade Marshal Gary Arnold." Chuy also scolded me for not showing up at AccessChicago on Thursday.  He said it was my responsibility as Marshal to show up at disability related events during Parade Week.  It was nice that someone took the role very seriously. 

LPA Contingent at the Parade
I was pretty excited to ride in the convertible, but it never showed up yesterday. I don't know what happened.  I thought I would be given a sash to wear also. No one could find the sash.  So with just a few minutes before the parade, I stood at the step-off point with nothing to show I was Grand Marshal.  Lucky for me, a concerned peer of mine dashed off to the store and picked up a tiara.  Not what I expected, but it did the trick. 

It also helped that Katie marched with me. Originally, she was going to cheer from the plaza at Madison and Dearborn.  But she walked with me instead, which was great. 

Everyone should get a chance to serve as parade marshal, especially for the Disability Pride Parade.  It's an honor, not just to be picked, but to be able to represent and lead the community. 

So many thanks to everyone who was a part of the parade on July 19, and to everyone who supported me in my role.

Here is the Grand Marshal with the Grand Lady-Katie
Below is the speech I gave during the program celebration.

The 2014 Disability Pride Parade
July 19, 2014

Grand Marshal Remarks

In Chicago and around the country, as members of, and as allies with, the disability community, we often talk about choices.  When I was new to Access Living, a colleague explained to me that independence doesn’t mean doing things by ourselves.   Independence is about making choices for ourselves, having access to a wide range of quality choices, and controlling our own lives. That concept applies to every issue we face.  It applies to housing, an issue about which every day the work continues to increase opportunities for people with disabilities to find a decent place to live that is in an integrated community, that is accessible, and that is affordable. It applies to health care, where around the country we continue to push for a system in which all people with disabilities, no matter the type of disability, have quality options to receive supports in their own home in the community instead of an institution.  It applies to employment. I applaud Governor Quinn for signing the Executive Order on Employment First.  I applaud employment advocates from Illinois and around the country. With their leadership, we move closer to a system in which people with disabilities have real employment options and employment supports, and we move farther away from a system in which people with disabilities are funneled into subminimum wage workshops.

And that concept applies to disability pride.  It’s an honor to be on stage as the Grand Marshal today. Ten years ago, for the first parade, I was the registration coordinator. I spent all my time drawing up diagrams with possible scenarios of how all the different groups would line up for the parade.  The next year, I was a parade co-coordinator with Janice and with Laura.  Dan Van Hecht, who the Van Hecht award is named after, did all kinds of work for the parade that year.  He once gave me a ride home on a Saturday afternoon after a long meeting.  We stopped at a hot dog stand and he started talking about this book called Love Languages.  As we stood next to the stand, eating our hot dogs, he asked me, “What’s your love language Gary?”  

That same year, I had a crisis with Union Park because the Parade conflicted with the Pitchfork music festival.  When I had no idea what to do, from out of nowhere, this new volunteer appeared who happened to be an expert in negotiations.  She spent what seemed like two days in a row on the phone with the Park District and somehow worked it out for us to stay at Union Park.  

Every year, the parade happens because a group a volunteers finds a way to make it happen.  They do so because they want to give people in Chicago and people around the country a time and a space to celebrate their pride as people with disabilities and their pride as a community.  Before 2004, there wasn’t a place and a space for people to come every year to celebrate as a community.  The volunteers of the disability pride parade give the community that option.  And now, because of their work, those options are growing.  Other places around the country are hosting disability pride parades.  

Pride may not be as tangible as housing or transportation, but it many ways it is just as important.  

Why is it important?  A few years ago at the parade I met a young woman from Michigan.  She had never been to the parade before.  She explained that no matter what, she just had to get to the parade.  She needed a space where she could be with the community and celebrate her disability identity. The parade gave her that space.

And it’s important for people like me.  Often when I walk down the street I have to carry a shield that protects me from the people who ask silly questions or want to take my picture. Today, I can put that shield away and walk unthreatened up Dearborn.

That’s why pride is important.  And it is the parade that gives us an avenue to celebrate pride every year.  

So today, as we celebrate the 10th Anniversary of the Disability Pride Parade in Chicago, I salute the Disability Pride Parade Volunteers. Many of them have worked on the parade almost every year. They do it, not to get paid and not to get an award. They do it so that all of us can come together as a community once a year. Because of them, the parade will be here, year after year.  

Thank you all so much for being here today, and thank you all so much for having me serve as the Grand Marshal. Happy Parade Day.  Thank you.


Friday, June 20, 2014

Inspiration outside a coffee shop at LaSalle Street and Chicago Avenue

Two days ago, a colleague of mine and I met with the person who runs disability services for North Park University in Chicago.  The disability service person also happened to be a long-lost friend of mine who I hadn't seen in probably ten years.  Because the meeting was probably going to cover than just business and disability, we met at a coffee shop a block away Access Living rather than at the office.   After about 50 minutes in the coffee shop, we headed back to Access Living, where I was going to give Drew, the North Park employee, a tour of Access Living.  Just outside the coffee shop, at the corner of LaSalle Street and Chicago Avenue, a woman approached us.  As she did, she looked right at me.  She had short, cropped, blonde hair, and she wore a white tank top and shorts.  When she spoke, she spoke with an Australian accent.  I don't remember what she said, but the words were full of what the disability community calls inspiration porn.  She said something like, "Oh my god, you are so awesome. I want to give you a hug."

I looked back at her and said, "You don't know me." 

She then explained that she had a friend who was super awesome.  I assumed that her friend is a dwarf and because I also am a dwarf, she drew the conclusion that I am super awesome. At that point, I told her that her words and actions were insulting.  It is nice and all if someone thinks you are super awesome, but I want to earn whatever awesomeness I have.  I don't want it handed to me on a platter simply because of my dwarfism. 

By now, the light had turned.  My group began to cross the street, and the young woman in the tank top started to drift in the opposite direction down the sidewalk.  Her face lost a little bit of the enthusiasm and her eyes betrayed disappointment.  But she didn't give up on me.  Her final words were, "My friend has done so much, and I know that you can too." 

"Maybe you can as well," I said. To this, she nodded, turned her head away from us, and went on her way down the sidewalk.

The experience was unexpected.  It is not uncommon to confront challenging situations on Chicago Avenue.  There is one woman who I've run into at least twice who is shocked every time she sees me and runs away in fright. Another time someone exclaimed to her friend, when I was but ten feet away, that I was the first midget she had ever seen.  Other people of short stature may or may not agree, but sometimes, based upon the look in someone's eye, you can tell how he or she will respond to dwarfism.  The Australian with the white tank top caught me completely by surprise. 

The worst part of the experience is that she is going to tell her friend, who again I assume is a dwarf, about the bitter dwarf she met in Chicago.  But the best part about the experience is that Carrie and Drew were with me.  Carrie and I work together.  We don't share the same disability, but she has had her fair share of encounters on the street based on stigma and prejudice against disability. The specifics of those encounters are often different than mine, but the themes overlap and we can relate to one another. So she knew right away what was going on, and what I would be feeling. 

With Drew, we joked afterwards that it was as if we had staged the whole thing.  In the coffee shop we talked about ways that North Park and Access Living could collaborate in terms of raising awareness about disability.  In the course of that conversation, Carrie and I stressed that stigma and  prejudice toward disability can sometimes be more of a barrier than any physical or programmatic obstacle.  What better way to illustrate that point than for a young woman to approach us and engage in a dialogue based upon disability assumptions and bias.  In my memory, Drew took in the encounter with this grin on his face, almost with a look of disbelief.  As we went back to the office and we debriefed on the experience, he said, "I am expecting the hidden cameras to come out at any moment." No hidden cameras, but plenty of entertainment, and things to talk about.




Saturday, May 31, 2014

Gwangju, South Korea, 5-18 (Day 4) Part II

Image of man in wheelchair in pottery workshop with woman working at table
Mr Kim in the pottery workshop
After the events recognizing the 5-18 Student Uprising from 1980, we returned to the Holiday Inn, the hotel where I stayed in Korea.  Many conference guests left that afternoon, but I stayed until the next morning.  With some free time, my new friend Jin Bread took me to see the Han Ma Um Independent Living Center, one of several centers in Gwangju.  Mr. Kim, who had been around throughout the conference and paid for beer two nights in a row, worked at Han Ma Um, and was waiting to meet us. He toured us around the center.  They make all kinds of pottery there.  From what I understand, they haven't yet, but plan to launch a business, with pottery sales as a way of generating income.  There is also a performance space in the center. Mr. Kim plays the guitar and is in a band. 
Stage at the Han Ma Um Independent Living Center
Stage at the Han Ma Um Independent Living Center
After the tour, Mr. Kim brewed some green tea.  We sat around drinking the tea and talking for a little while, then I returned to the hotel.  I wanted several hours on my own to pack and rest up for long trip back to Chicago.

When I told people I was going to Korea, many people mentioned the food, especially the beef. "You've got to try the beef!" a few people exclaimed.  In the four days I'd been there, the closest I came to Korean Beef was the short ribs at the Holiday Inn Lunch Buffet.  So for my last meal in Korea, even though a conference organizer told me I could return to the Holiday Inn Buffet, I ventured out to the streets of Gwangju.  I wasn't necessarily looking for Korean Beef, but I wanted something new. 
Holiday Inn Gwangju
More importantly, I wanted something that wasn't the Convention Center Buffet or the Holiday Inn Buffet. I walked up a street toward a bar called the "One Shot," where a group of us had been two nights in a row.  I was familiar with the street and it looked like there would be a lot of options. There were a lot of options, but once on the street, and peering through the windows into restaurants, I got nervous.  After four days, I knew about one word in Korean -- Hello.  There was  no guarantee I could communicate with anyone in the restaurants.   I was looking for a place that had a menu posted on the door in English, or places with big pictures of food on the wall.  A few times, I found places that met the criteria, but there were all kinds of shoes piled up at the door and I could see customers inside wearing flip flops.  Concerned I would break some sort of protocol, I avoided those places.  I ended up walking well past the One Shot bar before I bit the bullet and walked into a place. It was a small joint, kind of like a Vienna Beef greasy spoon in Chicago, with a counter, a menu posted above the counter, and about ten tables on a hard tile floor.  Two of the tables were occupied.  The man who greeted me spoke no English and handed me a small laminated menu with tiny Korean script.  There were a few pictures above the counter.  I pointed at one and after a little bit of back and forth with the man who gave me the menu, he went to place my order with the kitchen.

The soup he delivered a few minutes later appeared to match the item in the picture to which I had pointed.  Nevertheless, I had no idea what it was.  It had a thick but translucent red broth, with noodles the consistency of Ramon, cabbage, some other vegetables, some sort product that could have been fake meat or processed meat, and, to my surprise, sliced hot dogs.  I tried to eat all of it, but there was a lot.   After about twenty minutes, I paid, walked back to the hotel, and tried to find the dish I ate on the Internet. My best guess is Hangover Stew.

Image of a red stew in a bowl --Hangover Stew
I hope it was the stew.  Because while I never had any Korean Beef, it sounds kind of cool to say I had Hangover Stew.  


Sunday, May 25, 2014

Day 4 in Gwangju, South Korea -- 5-18

Late last summer, my wife learned there was a remote possibility of a trip to Tajikistan.  If the trip were to happen, she would leave within just a few weeks.  Knowing that the trip might never happen, she spent hours on the computer, studying the government, culture and people of Tajikistan.  She never made the trip, but my wife inspired me to research South Korea when I received an invite to present at a conference in Gwangju.  One of the first things I learned about when researching South Korea was the the May 18th People's Uprising, an event that helped shape democracy in South Korea and that appears to still have a dramatic impact on the day-to-day lives of many people who live in Korea.  I was thrilled to learn that, as a guest at the World Human Rights Cities Forum 2014, I could request an invitation to attend a government ceremony commemorating the May 18th People's Uprising.

On May 18th, my fourth and final full day in South Korea, many of us from the conference boarded one of the four buses lined up outside the Holiday Inn and headed for the National Cemetery for the 10 a.m. event.  On the bus, we were told that just as many people are furious with the government for the way it handled, and continues to handle, the Sewol Ferry Disaster, many people are unhappy with the official, government sanctioned event to commemorate the May 18th Uprising.  The details about the fury I didn't understand, but the disconnect was so significant that families of victims from the May 18th Uprising refuse to participate in the government event.  Rather than participate in the government event, the families and other progressive organizations staged an alternative event about half a mile away from the government ceremony. 

Scene from Audience of official Government May 18th Event
Guests in white hats before Official May 18th Event
Though I've never been to an event on the White House Lawn, the government sponsored May 18th Event reminded me of what a White House Lawn event might look like.  After disembarking from the buses, we checked in at security, picked up a pass, then passed through another security check point with bag inspection and metal detectors.  Once through the two check points, we found seats among hundreds of plastic chairs set up for the event.  Each chair had a program and a funny looking, but effective, white paper hat lay on top of it.  The hat was designed to protect us from the sun. The ceremony itself was barely 25 minutes long.  Two government officials spoke and a choir sang a few songs.  By 10:30, we were out of our seats, milling around, and ready to head back to the buses, which weren't scheduled to return to the hotel until 11:30.  That's when the Director of the Gwangju International Center announced that he would be willing to lead a group up the road to the people's alternative event.  That announcement made the difference between my time in Korea being a memorable, rewarding experience and being a deeply moving, significant experience.  I never figured out what connection the Director had to the May 18th People's Uprising, but during the walk up the road, he spoke about the events with clarity, as if he knew directly people who had been there and were impacted.  The People's event was in the middle of a hilly cemetery.
image of grassy cemetery on hill.  Many people sitting amongst rows of cemetery
People's May 18th Event
A stage was at the base of the hill.  Rather then chairs, people sat on the grass.  Toward the top of the hill, some people stood, or kneeled next to graves, a few of them with their heads down and a few of them weeping.  I made my way to the top of the hill, where I could better see all the people on the hill and the surrounding landscape.  The program reminded me of the program from the candlelight ceremony the previous night.  Two different singing groups sang empowering songs that inspired the audience to join in with raised arms and fists.  I was on the hill for about 10 minutes, watching the performance, looking at grave sites, and observing the people. 

Grave site at People's Cemetery, Korea
Grave Site at Cemetery
We couldn't stay long.  We had to head back to the buses. On the walk back, I overheard the International Center Director and a Conference Guest from Sweden talking about the May 18th Uprising.  They brought up the United States Involvement in 1980, at the tail end of the Carter Administration.  I asked the Director to repeat what he had said.  He told me that the United States supported the military, not the people's uprising.  According to the U.S. Government, what happened in 1980 was not a democracy movement, but rather a movement that threatened national security. 

Of course, I don't know much about the issue.  But if that's true, it would seem to be disappointing.  

Wednesday, May 21, 2014

Cities, Disability, and a Candle Light Ceremony

Day Three of the trip to Gwangju, South Korea was the day of my presentation for the World Human Rights Cities 2014 Forum.  I was one of six presenters who were part of the "Cities and Disability" Session.  One speaker was from Brazil, an architect who worked for the Municipal Government in Curitiba, a city of about 1.8 million.  The other four speakers were from Korea, two from Gwangju and two from Seoul.  As far as I could tell, three of us were disabled.  The first speaker works for an independent living center in Gwangju.  He used a power wheelchair. He kicked off his presentation by indicating that it might be a little hypocritical for Gwangju to call itself a human rights city, considering that less than 20 percent of the bus fleet is accessible to riders with physical disabilities.  He also suggested that barriers to access would remain because local authorities care more about budgets than the human rights of people with disabilities.  He compared local authorities to the crew of Sewol, which was concerned with profits, not the passengers on the ferry.

man in wheelchair giving presentation.  Desk in front of him, screen behind him.  Man to his right holding paper as accommodation
First Speaker of the Cities and Disabilities Session
Not that I was hoping to hear disparaging comments about a city I knew very little about, but if we were going to sit through six hours of presentations (mine included), I was happy that at least one of us was ready to challenge the establishment.   The second speaker expressed the same sentiments, in a less direct way.  He was an expert on Universal Design.  He opened his talk by explaining that he was asked to talk for an hour about highlights of Universal Design in Gwangju, but that he would be hard pressed to find enough highlights to fill an hour of time.  He did talk about the baseball stadium, which I had visited the previous day. He mentioned something about Universal Design that I had never heard.  He said that for every five male restrooms in the stadium, the stadium was required to build eight female bathrooms.  Considering the long lines I have seen coming from women's rooms at concerts, stadiums, theaters, and restaurants, it makes perfect sense and seems like a insightful application of universal design.

The fourth speaker was the architect from Brazil.  I hung out with her and her husband a lot at the conference.  She spoke about work Curitiba had done to improve access, and stressed that changes were being made with participation from the disability community.  Throughout our time together, she often stressed this approach -- the social model approach of "Nothing About Us without Us."  Nothing should be done on behalf of people with disabilities without the input of people with disabilities.   It might have been the translation, but the final speaker, a professor from Seoul, seemed to be a little behind on this approach. She hesitated when talking about consumer driven peer support, as if she was not sure if this was the right philosophy.

image of group of about thirty people, some in wheelchairs, posing in front of room for photo
Participants and some of the attendees at Cities and Disabilities Sessions
Though I looked at my paper too much, and fell behind on my power point, I felt pretty good about my presentation.  I covered my material and may have made somebody laugh (with a joke) at least once.

I was thrilled and energized to complete the presentation, and felt pretty good about all the work I had put into it, but the day got ever better after the conference sessions.  At seven o'clock, we all loaded up on buses lined up outside the hotel and drove down town for a candlelight ceremony recognizing the victims of the April 16 Ferry Disaster in South Korea.  Evidently, each
Saturday, Seoul hosts a candlelight ceremony.  People plan to do so until the government apologizes and launches an inquiry into why emergency services (like the Coast Guard) didn't respond appropriately.   Gwangju doesn't host ceremonies each Saturday but did on May 17 because it was the eve of the traditional May 18 Recognition Events. Though what happened in South Korea is a tragedy, especially for all the families involved, I was happy to participate in the candlelight
image of stage and crowd at outdoor ceremony in evening
Candlelight Ceremony on May 17 for Sewol Ferry Disaster
 ceremony.  A group of us made our way near the stage and sat amongst the crowd for nearly an hour, watching the speakers, musicians, and performers.  According to a woman with our group, emergency services on the water could have saved so many more people.  They had two hours to do so.  But they only rescued passengers who were on the deck.  They never went below deck and told the passengers in their cabins to evacuate.  Indeed, that does deserve an apology and an investigation. She explained that citizens of South Korea are also furious with the media for not being critical of the government response to the sinking.

Friday, May 16, 2014

World Human Rights Cities Forum 2014 -- Day 2

large group of people on stage with steps leading down from center of stage
Group shot after Opening Session on May 16
Today was the second full day at the World Human Rights Cities Forum in Gwangju, South Korea.  The morning started with breakfast, where I sat down next to a man who is a participant in the conference.  I've never been much of a talker, but I did my best to start some conversation with him.  We had met briefly the evening before on the elevator.  My conversation attempts fell flat though.  While we sat, he got four times in a short space of minutes to get more food at the buffet.  It's not like he filled the plate each time, but he got up a lot.  The fifth time he got up, he didn't return.  He left without saying good bye. 

I'll let it go.  At the Plenary Session that morning, he was a speaker.  Maybe his mind was on his speech.  The morning was Welcoming Sessions and Plenary Session.  The afternoon was another plenary session, a break out group, and an informal meeting of disability groups and advocates.

It's interesting to travel half way around the world and hear things that mimic issues in the United States.  In the morning session, a woman spoke the Brazil 2016 Olympics, and the displacement of people to make way from the construction of stadiums.  The city now has thousands more homeless people while there are hundreds of thousands of unoccupied housing units.  This was like Chicago during the 2016 Bid.  Groups opposed to the bid warned of the same displacement issues, and in Chicago there is an issue of unoccupied Chicago Housing Authority Units.  In the afternoon, I sat in on part of a session called Cities and Violence, which privatization as a form of violence.  A woman from Japan talked about the privatization of the Japanese workforce, how more and more the ranks of full-time employees are giving way to part-time contractual workers.  The contractual workers struggle more and more to earn a living because companies are low balling bids in order to land the contracts.  Similar to stories I hear in the United States about contractual workers.  And in the meeting with the disability community, stories out of Korea and Brazil regarding transportation, health care assistance and design echoed the United States. 

image of large group of police on right, pepper spraying protesters on left of frame
Bus Protest in Seoul, South Korea on April 20
One of the best parts of the day was meeting up again with a man named Kyung-seok Park, an advocate who visited Chicago and Access Living in 2002.  He runs a group called Solidarity Against Disability Discrimination.  They've led successful campaign against inaccessible transit in South Korea, and now work on transportation, asset, and personal assistant issues.  Last month they protested against the inaccessibility of bus lines that run between cities in Korea.  They staged the protest on April 20, which is Disabled Persons Day in South Korea.  The police were waiting for them with pepper spray. 

The working relationship between SADD and the Independent Living Centers in Korea appear to be similar to that between Access Living and ADAPT.  ADAPT does more of the civil disobedience, direct action work, while Access Living supports ADAPT's effort and works more through legislative and legal channels.

Tomorrow afternoon I give my presentation on Independent Living in Chicago. 

Thursday, May 15, 2014

Day one in Gwangju, South Korea

Picture of street in gwangju taken from pedestrian overpass
Gwangju South Korea.  Picture taken from Pedestrian Overpass.
I arrived in Gwangju, South Korea on Wednesday, after a 13-hour flight from Chicago to Seoul, a bus ride across Seoul, and a one-hour flight from Seoul to Gwangju. During the 13 hour flight, I used the restroom four times, which seems kind of reasonable for such a long flight.  Luckily, I had an aisle seat.  The two people to my left used the bathroom one time each.  One time each?


I am in Gwangju for the World Human Rights Cities Forum.  The Forum was launched in 2011 to connect cities across the globe committed to human rights.  Gwangju has history of peace and democracy.  Most recently, in 1980, students led a democracy movement to
                                                                                       protest against what at
picture of three men around bus kiosk in Gwangju South Korea
Talking about bus accessibility during tour of Gwangju
the time was a military dictatorship in South Korea.  The movement was shattered by violence.  Many students were killed by government soldiers. The event is known at the 5-18 Movement, because the events happened on May 18.  While I am here, there will be local ceremonies to honor the event and the students.

I've been invited to speak about Disability Rights and Independent Living.  Yesterday, my first full day in Korea, I was taken on a tour to study some of the access features in Gwangju.  One of the coolest visits along the tour was to the new baseball stadium, called KIA Tiger Stadium.  The stadium follows Universal Design and before construction began the architects invited members of the disability community to give input on the features of the stadium.
photo taken from stands of baseball stadium, overlooking field
KIA Tiger Stadium