Monday, April 30, 2012

Relativity Theory

In high school, I was a member of the boys gymnastics team.  I competed on the parallel bars.  In gymnastics, especially if, like me, one competes in just one or two categories, there is a lot of waiting around.  In practice, you spend most of your time waiting to use the equipment.  During competitions, you spend most of your time waiting to perform your routine.  At practice one day my sophomore or junior year of high school, waiting my turn to run through my routine on the parallel bars, I had an epiphany.  Nearly 25 years later, I still remember that epiphany.   While waiting in line, I was watching one of my team mates practice some moves on the equipment.  He was a relatively short young man compared to the rest of the male student body at my high school.  He was probably five foot three or five foot four.  At the time I was probably about four feet tall.  This was the mid 1980's.  So limb lengthening wasn't as well known as it is today.  In fact, I probably had never heard of limb lengthening at the time. But I remember thinking, if I grew ten inches, I would still be considerably shorter than my team mate, who himself was considered a short guy himself. 

Because we spent so much time on the gymnastics team sitting around thinking about things, a lot of us considered ourselves amateur philosophers.  In fact, a small group of us would go out to Burger King once or twice a week after practice.  One of us would go up to the counter to order a large soda while the rest of the group found a table hidden away in the back of the restaurant.  We'd sit around for about hour talking about what we imagined were deep issues, sharing the soda and sneaking refills at the soda fountain.  With this amateur philosopher status in mind, I told my team mate about my epiphany when he finished his set on the parallel bars.  He and some of the others waiting around near the equipment appeared pretty impressed.  With his feet on the mat, and his arms resting over the bars, he gazed off toward the wall of the gym.  "Wow," he said.  "You are right."  

Though we were full of ourselves, selfish, and a little pretentious to sit around Burger King, pretend to be Albert Camus, and steal soda, I did learn something that day at gymnastics practice.  I learned that height would never really be an issue. Sure, I can't reach half the stuff I want at the grocery store, I can't ride the Batman Roller Coaster at Six Flags, I half to jump up to avoid getting knocked over by a ski lift, and people sometimes condescendingly call me "Big Man!"  But no matter what height someone is, a few more inches would always do some good.  Just ask Russell Wilson, one the most talented quarterbacks in the NFL draft, but whose stock was low because he is just five foot eleven.  I need more than a foot and a half just to get to five eleven.  I learned that day that, like so many other things, height is relative.  Yes, it is a concrete number.  But compared to the many other things that are used to measure a person's life, it is relatively insignificant.  Rather than worry about ten inches, six inches, or four inches, it better to invest in attributes that better define who we are -- trust, honesty, dependability, educations, professional skills, experience, etc., etc.....  Not that I have much of any of those.  But they seem like more worthwhile investments. 

That is what I learned so many years ago at gymnastics practice.  Perhaps a little corny, but no more corny than sitting around Burger King acting like Camus. 

Sunday, April 22, 2012

All natural

           For more than 10 years, I've worked as a public relations coordinator for a disability rights organization in Chicago called Access Living.  In that role, I pitch stories to the media about disability events, disability issues, and people with disabilities.  Sometimes, the pitches lead to a story in which disability is a prominent.  Though it is my job to give voice to disability, and raise awareness around disability, my favorite media stories, in the context of disability, are the stories in which disability takes a back seat to other issues.  The Chicago Tribune features a column called "What's Your Problem?"  a column written by Jon Yates that helps citizens work through situations in which they may have been deprived of what they should be entitled within a business system or a government system.  A few years ago, Yates published one of my all time favorite stories that features disability.  Unfortunately, I can't find that column now and share it here.  But it featured the tale of a young man who was having some kind of issue.  I can't even remember what the issue was.  But somehow, the problem was related to the young man attending his prom, or some sort of high school dance.  At some point in the column, Yates mentioned that the young man's date uses a wheelchair.  The young man's problem, and the column's issue, had nothing to do with the young woman's disability.  Even so, Yates mention of disability was not gratuitous.  It felt natural when it was mentioned.  And that's the point.  At Access Living, and in my work, I try to deliver the message that disability is a natural part of life that impacts each of us in one way or another.  It shouldn't define us, limit us, or give us an advantage.  Yes, people with disabilities are entitled to accommodations that help us perform major life functions. Nevertheless, disability is typical and people with disabilities should have every right to pursue opportunities available to those without disabilities, and people with disabilities should have every right to expect to be treated with the same respect as those without disabilities.  With a simple mention of disability in his column, Yates did what I am assigned to do in my job -- show that disability is natural and that it is no big deal that people with disabilities are among us. 
      In the midst of all the recent attention showered on Game of Thrones, and particularly Peter Dinklage, I was reminded of this column.  Just before the premiere of Season 2, all kinds of articles were published about the hit tv show on HBO, many of them featured Dinklage, who has earned the lead billing on the show.  After one such article was published (again, I can't find it, sorry), my parents called me in a fit of excitement.  "Did you see that article about Dinklage?" they asked.
     "I think so," I answered.
    "It doesn't mention dwarfism once," they continued.
     They were right to be excited.  Just as the Yates "What's Your Problem?" column showed that disability is a natural part of life, an article about Dinklage (who everyone knows is a dwarf) that doesn't mention dwarfism shows that dwarfism is no big deal.  It doesn't define Dinklage and certainly doesn't limit him.  He is just another actor and just another participant in life. 

Saturday, April 14, 2012

Double Down Dumb

Any bored Chicago Resident need had looked no further than the 4th Annual Double Denim Bar Crawl for something uproariously fun to do on April 14th. Though I had nothing better to do today, the Bar Crawl was not for me. For many reasons I stayed away. Not the least of which was fashion.

To build publicity around the event, the bar crawl poked fun at the double denim look, evidently a poor fashion choice on most days. With no knowledge of fashion myself, I naively make poor choices in clothing nearly everyday. With that in mind, I stayed away from an event that encouraged questionable fashion. Even if just for one day, I was proud to know that, in sweats and a t-shirt, I was better dressed than at least a hundred other Chicago residents.

The bar crawl was a fundraiser for Autism First. Of course it was a fundraiser. Why else would some one deliberately choose poor fashion. But fashion wasn't the only poor choice of the organizers. If the goal was to promote positive awareness of Autism, and promote the lives and independence of Autistic people, they could have picked a better group to support. Far from empowering autistic people, the group has been accused of demonizing autism, and blaming autism for ruining the lives of parents of autistic people. In 2007, Autism Speaks launched a "Ransom Notes" campaign, which compared autism to a kidnapper, stealing the lives of children. The campaign was attacked and dismantled by a new group called the Autistic Self Advocacy Network, which is a group created by and run by autistic people, working to advance a "a world in which Autistic people enjoy the same access, rights, and opportunities as all other citizens."

Fashion and autism politics aside, I still wouldn't have gone to the bar crawl on Saturday, April 14th, no matter how bored I was, because of a statement one of organizers wrote on his friend's wall earlier in the week. The organizer wrote, "Thanks Jess! Quick clarification, the awesomeness goes down this Saturday! And yes, we have a midget this year."

I have always been a bit naive, but I am fully aware that there are plenty of gigs, in Chicago and elsewhere, that recruit little people simply because we have an atypical physical stature. For some reason, people think having a short guy or a short woman at a party really livens things up. Just today, my old pal, and promoter of dwarf empowerment, Danny Black posted a message in search of a female dwarf in California who would be willing to wear a bikini and dance in front of 100 guests at a 40 year-olds birthday party. No matter how many reality shows try to 'raise awareness' about dwarfism, Danny Black is going to continue to get phone calls from people who are willing to shell out money because they think "midgets are fucking awesome man!"

But please. A fundraiser for a disability group? Even if the ethics of that disability group are a bit questionable, it's still quite poor judgement. How can there be anybody, especially connected to the disability community, not listening and paying attention to Peter Dinklage? Come on! The man won a Golden Globe, spoke out against dwarf tossing, and was the subject of the coolest article ever about dwarfism.

To give them some credit, Autism Speaks did respond when I wrote them. They were sympathetic to my concerns and they reached out to the organizer of the event, who was the perpetrator of the "yes, we have a midget this year" comment. The perpetrator wrote to me and apologized, explaining that his behavior didn't really reflect him as a person. Perhaps he only gets that way when he culls his closet for denim and thinks about drinking a lot of beer. I certainly appreciated the apology. But I wonder what came of the little person who supposedly made an appearance. Was he just another person trying to raise money for what he thinks is a good cause, or was he part of show?

Sunday, April 1, 2012

Fate of the Affordable Care Act

Like many others, I spent a lot of time this week trying to follow the U.S. Supreme Court news about the Affordable Care Act. Starting early in the week, the Court spent three days on the Affordable Care Act, listening to arguments from the White House Administration lawyers in favor of preserving the law and from lawyers arguing against the constitutionality of the law. The case made it all of the way to the Supreme Court because different states around the country filed complaints against the "Insurance Mandate" within the law. The mandate requires that everyone in the United States purchase insurance. Opponents of the law attacked the mandate, arguing that the mandate infringes upon individual liberty. According to opponents of the Affordable Care Act, no one should be told they have to buy health insurance. I wonder if these people are also against seat belt laws, and laws that require car owners to buy insurance.

The Court Justices spent a day or so focused on the mandate. Based upon news stories from journalists who tried to read between the lines of the questions, the Justices are skeptical of the mandate's constitutionality. After examining the question of constitutionality, the Justices then spent a good deal of time on the remainder of the law, exploring whether or not the entire law should be stricken with the insurance mandate or if pieces of the law could remain. Again, based upon media stories, many people seem to believe that when the Court publishes its ruling, in June, the entire law will be abolished.

For the dwarfism community, and for other people with disabilities, this is bad news. Passage of the Affordable Care Act in 2010 was a monumental occasion. For the first time ever, people with dwarfism, and other pre-existing conditions, were protected from insurance companies. Prior to the law, insurance companies could deny coverage simply based upon a person's dwarfism. The law makes it illegal for companies to deny coverage based upon dwarfism, or any other pre-existing condition.

The arguments people use to justify denying insurance to individuals have been kind of ridiculous, from Mike Hukabee who said no one would buy a lemon from a used car salesman, to a guy earlier this week on a show called "Chicago Tonight" who said insurance companies shouldn't have to provide insurance to some people just like a bank shouldn't have to provide a mortgage on a house that fails inspection. While I wouldn't want to be sold a lemon, the comparisons don't make sense. The point of health care is to provide health services. Everyone, whether or a dwarf or not, will need health care coverage at some point in their lives. Insurance companies don't want to take the risk of insuring someone who may be more vulnerable. But in terms of cost, it's more risky if a person doesn't have coverage. If a person doesn't have coverage, again whether that person is a dwarf or not, then when that person gets sick, emergency room costs and other crisis measures will end up costing society more money in the long run.

While following the Supreme Court this week, I learned that if the Insurance Mandate is repealed, but part of the Affordable Care Act is retained, the pre-existing conditions protections are not likely to survive. The lawyers for the administration, who are defending the law, told the Supreme Court Justices that if the mandate is struck down, the pre-existing conditions protections would no longer be affordable. So for people with dwarfism and other disabilities, if the entire law isn't preserved, we lose.

I am not sure what to do at this point. The Justices probably have made their decision. We just have to wait a few months before we learn what the decision is. While we wait, I am comforted by a quote from a recent issue of The Nation Magazine. The quote gets at the fact that the health care industry in this country isn't really about protecting people and ensuring that people have access to resources that support their health. Instead, like some many other things, it's about business and money. If it were about health and humanity, everybody would be on the same page, working to ensure that all of us had access to affordable, quality care. The Nation quote is, "The challengers (to the Affordable Care Act) maintain that the case is about fundamental liberty, specifically our freedom not to be compelled to purchase things we don't want. But that frame, while undoubtedly appealing to the radical libertarian strain of the Tea Party, is misleading. In fact, the only 'liberty' that would be protected by a victory for challengers is the freedom of insurance companies to discriminate against sick people, (The Nation, p. 5, March 26, 2012)