short term victory?

Just over a month ago, I posted about the creation of the federally-funded temporary high-risk pool. The pool, which went into affect on September 1 in Illinois, will "provide transitional coverage to 2014 for the currently uninsured with preexisting conditions." The pool will last until 2014, when, under the health care reform bill passed earlier in 2010, it will then be illegal for insurance companies to deny coverage based upon pre-existing conditions. At that point, the pool will no longer be needed. In the September post, I mentioned that the pool, and piece of legislation that makes it illegal to deny coverage based upon pre-existing conditions, is great news for people with dwarfism, many of whom have been denied coverage because of dwarfism. In the past, people with dwarfism who were denied coverage had no legal resource to challenge the denial and, worse, often then had no insurance options.

With the November mid-term elections approaching, it appears that the recent gains affordable people with dwarfism and others with pre-existing conditions may be at risk. I am not a political expert, and don't know the platforms of all the candidates' challenging incumbent democrats, but it seems that if Congress switches from democrat to republican control, the health care bill passed in the Spring would be vulnerable to repeal.

Recently, at a "Values Voter Summit," 2008 Republican candidate Mike Huckabee said that people with pre-existing conditions are uninsurable. He compared insuring people with pre-existing conditions to insuring a house that has burned down or a car that has been totaled. Here a link to the statement from "Not Dead Yet News & Commentary," a blog written by my friend Steve Drake. As a person with a pre-existing condition, not only is such a statement offensive (I'm been called a lot of things in my life - never before have I been compared to totaled car), it's wrong. I'm probably the perfect consumer for my insurance company. Every paycheck, a chunk goes to my health care coverage. But over 10 years, but for a few physicals and a few eye exams, I've never used my insurance. They get all of my money (and all of my employer's money), but rarely do they provide me services. I am just one case, but a pre-existing condition does not determine a person's health record.

But Huckabee is not alone. An October 5 opinion piece in the Chicago Tribune says that repealing the health reform legislation will be realistic if the republicans earn a majority in the House of Representatives -- Dennis Byrne -- Obama Care can and must be replaced The Tribune Opinion piece by Dennis Byrne doesn't mention pre-existing condition as one of the ailments of the law. Bryne specifically targets rising premiums and a doctor shortage as reasons behind discontent about the law. But any attack on the legislation is an attack on pre-existing conditions.

While Little People of America supported the inclusion of coverage for people with pre-existing conditions in Health Care reform, LPA is not a partisan organization. Unfortunately, the organization may suffer a tremendous setback because of partisan politics. Hopefully, whatever party is in power come 2011, decisions will be made not based upon what a political party wants, but based upon what is good for the population. Though I may be biased, I can't understand why full health care coverage for everyone is not a good thing.

Matt Roloff at the Illinois Holocaust Museum

A week ago, September 26, I went with a friend to the Illinois Holocaust Museum to hear a talk by Matt Roloff of Little People, Big World. From the day I first read the listing in a Skokie Illinois Newspaper, announcing Roloff's visit to the museum, I'd been looking forward to the lecture, mostly because of my curiosity about what Roloff might say. Whoever we are, the Holocaust holds a significant place in our individual conscience. I was fascinated to hear what connection Roloff would make between what he had to say and the place in which he was speaking.

Roloff spoke for about an hour. Kicking off the lecture, Roloff did make a connection to the Holocaust and people of short stature, alluding to a woman named Liebe Perla and her family, a group of musicians who were dwarfs. During World War II, Perla and her family survived Auschwitz because Mengele kept them alive in order to conduct experiments upon them. Roloff put that story in the context of his own life, explaining that as a young boy, he spent months and months in hospitals. Although he had many surgeries that were necessary, Roloff said he was often subject to poking, prodding and pictures at the whim of doctors. Examinations that made him feel less like a patient, and more like an experiment.

I don't doubt it. When Roloff's generation and my generation was young, not much was known about dwarfism. I have memories of standing naked up against a wall as a four or five year, with a team of doctors before me perplexed by the curvature of my back and legs. Today, I am grateful for the brace that straightened my back and the surgeries that straightened my legs. Without them, I probably wouldn't be able to do many of the activities I do today. But even a four year old tries to maintain some dignity. I'm not sure if such a public examination is necessary.

Roloff linked the prejudicial treatment of Liebe Perla and the objectifying treatment that he experienced as a young boy to contemporary decisions that reflect prejudice against people of short stature. He said he knew of a couple who wanted to have a child. Through either in vitro or preimplantation genetic diagnosis, they wanted a dwarf child. But their wish was refused. No one would implant them with an embryo that carried the gene for dwarfism. People with dwarfism certainly face challenges that are specific to dwarfism. But everyone faces challenges. To presume that the challenges of a dwarf compared to the challenges of another person are more significant, and justify decisions that suggest a dwarf's life is unworthy of living, is certainly reflective of prejudice against people of short stature.

To change attitudes, or systems (see schooled, September 29), that deny people with dwarfism a choice offered to typical statured people will not be easy. Even after the work of people like Billy Barty, the founder of Little People of America, and the Roloffs, who have opened up the minds of millions of people about dwarfism, we still face systemic barriers that deny us what others are offered. But even if it's one person at a time, if Matt and others continue to share their stories, like he did in Skokie at the Holocaust museum, minds will open up and understand that far more connects the lives of little people with others than separates it.