Saturday, March 20, 2010

All aboard that's coming aboard

On Sunday, March 21, the U.S. House of Representatives is expected to vote on health care legislation. Over the past year, the legislation has endured many amendments, cuts and edits. But one piece of the legislation critical to people with dwarfism has remained intact. If the current bill passes the House tomorrow and is eventually signed by President Obama, it will no longer be legal for insurance carriers to deny a person health care coverage based upon a pre-existing condition. Dwarfism is considered a pre-existing condition.

In the past few years, I have heard many stories of individuals with dwarfism who are denied coverage because of their short stature. In one instance, a colleague of mine lost a brother who had a very treatable condition but who could not find coverage.

I am no health care expert, and have been having trouble following all the politics and economics behind the health care debate. But I do know that the current bill has strong support from national disability rights organizations. And because the legislation will make it illegal to deny coverage because of dwarfism, I think the bill deserves the support of people of short stature.

Prior to tomorrow's vote, please contact your Federal Representative and ask him or her to support the bill.


Saturday, March 13, 2010

making choices

Last year, stories about a theme park in China with dwarfs as the attraction circulated around a dwarfism list-serve of which I am a part. If the park existed, visitors could pay an entry fee then watch dwarfs sing and dance. Based upon the sources of the stories, it was difficult to discern the legitimacy of the theme park -- if it actually existed or was just a myth.

A few months later, in January, a reporter from the New York Times called me. She verified the existence of the park and asked for time to ask a few questions. She wanted perspective from Little People of America. She called back on a Saturday night. (She lived in China. It was hard to find a time that worked) We spoke for about half an hour.

From all that I can understand about the situation in China, opportunities for little people, as well as other people with disabilities, are limited compared to opportunities available for people without disabilities. In the interview, I hoped to support the individuals in China who perform at the theme park while also stressing the need to change the environment for people with disabilities in order to ensure they have access to opportunities available to the non-disabled population. In my view, two limited choices -- isolation and mistreatment in the mainstream, or working at a park at which strangers pay for the opportunity to gawk - are not acceptable. I thought it would be irresponsible and short sighted to support the decision of the performers at the park without also making some kind of plea for change.

Whatever my strategy, my execution lacked. The New York Times story ran early in March. The piece included just one quote from me, calling the park in China "horrible" and comparing it to a zoo. I do believe it is horrible if one of the only opportunities for a dwarf to live a productive life with quality supports is at a park where guests will pay $9 a ticket a to watch "Swan Lake," not because of the talent of the performers, but because the performers are dwarfs. Though the reporter and I spoke for a long time, I should have delivered every statement I made as if it were to be the only one used for the story. I regret not supporting the performers.

As the story spread, comparisons were drawn between China and the United States. In a blog analysis of the New York Times story , Dan Kennedy, the father of a little person and the author of a good book on dwarfism, Little People: Learning to see the world through my daughter's eyes, points out the similarities between China and the United States. Kennedy writes, "a number of people with dwarfism, including intelligent, successful people who are LPA members in good standing, have exploited their unique features to get work in the entertainment business."

Soon after the New York Times story, I had the chance to make up some ground in an in a story from AOLNews. The reporter wanted to follow-up on the New York Times story. During the interview, I again failed to keep in mind messaging, and, when the topic moved off of China, I might have dug a deeper hole. The reporter asked about similarities between the jobs at the theme park and some jobs available to dwarfs here in the United States. Specifically, the reporter asked about St. Patrick's Day.

The story quoted me to say, "Some little people still cringe when they go to a bar on St. Patrick's Day," Arnold confessed. "It reinforces the traditional stereotype that we're non-human." Around the quote, the reporter ventured a comparison between St. Patrick's Day and Thanksgiving, claiming the holidays a "day of mourning" for little people and Native Americans respectively.

The comparison between holidays (I've never actually heard anyone refer to St. Patrick's Day as a day of mourning) probably underscored my mistake, making it appear that I blame people of short stature who act as Leprechauns, elves or other roles traditionally cast as little people for the social barriers that all dwarfs face today. Blaming other people of short stature for the barriers I may face is as ridiculous as identifying March 17 as a "day of mourning." After all, if little people who dress as Leprechauns are too blame, I may not have survived Saturday, March 14 with my humility intact. Twice on March 14 I biked through downtown Chicago. While on my bike, hundreds of people dressed in green lined the streets amidst bar crawls in the wake of the Chicago St. Patrick's Day Parade. Not once did anyone, drunk or sober, mistake me for a leprechaun or try to catch me.

In the end, for both stories, I wish I had focused on what I believe will lead to real progress. If we are to eliminate the barriers that stand between dwarfs and full acceptance, and dwarfs and equal opportunity, the answer, in China and everyone, is not to limit the choices which are available to us. The answer is to expand those choices.

Sunday, March 7, 2010

Dickinson Follow Up

A few weeks ago, I posted about a school in Dickinson, North Dakota with the "midgets" as a mascot. Back in January or early February, the mascot name came up at a school board meeting. In a newspaper story covering the meeting, the school board president invited people to call him on the telephone to share their opinions, either in support of continuing to use "midgets" as a the name of the mascot, or against.

A week and half ago, the Dickinson Paper ran a follow up story. In the more recent story, the board president reports that the majority of the calls have been in favor of keeping "midgets" as the mascot. In fact, from what I've heard, support of the current mascot is so strong, public figures who voice any concerns about the name put their job at risk. In the 1990's, the last time the mascot name was addressed at the level of the school board, the board members who wanted a change were all recalled. I believe most of the support comes from town of Dickinson and from Dickinson Alumni around the country.

With such strong support of the current mascot, if there ever will be a change in the name of the mascot, more voices against using "midgets" as a mascot need to come forward. Though Dickinson adopted the name "midgets" as a term of endearment, because the word today is so closely connected to the objectification, at best, and ridicule of people of short stature, I think the name needs to change. Even with good intentions, I could never have anything to do with an institution connected to the word "midget." And whether or not the family was a part of Little People of America, I would be embarrassed if any parent of a short statured child had no choice but to send his or her child to a school with such a mascot name. If you support changing the name of the mascot in Dickinson North Dakota, I invite to share your feelings with the School Superintendent, Douglas Sullivan. You can send an email to this address:
Douglas thanks