Tuesday, January 31, 2012

don't get in the way of progress

About a month ago, maybe less, I was interviewed by a reporter with Bloomberg News. The reporter was writing a story about research conducted by Biomarin on what are being referred to the science industry as treatments for dwarfism. Biomarin is a pharmaceutical company based in California that develops medicine for "rare diseases." Evidently, in the world of science, or at least within this particular realm of science, dwarfism is a rare disease. According to the article, Biomarin has a new drug for dwarfism that is ready for human trial. Mice trials were successful. (I wonder if the mice were transferred to the rat lab after the trials.)

While short stature is the most obvious visible affect of dwarfism, the new biomarin drug is not actually intended to affect a person's height. Rather, it is supposed to address other health issues common in people with achondroplasia (the most common type of dwarfism), such as sleep apnea, bowing of the legs, and compression of the spine.

The story ran a little more than a week ago, on January 23. Little People of America knew that phone calls from reporters writing about this type of treatment would be coming at some point. Back in July of 2011, at the LPA National Conference, a few individuals with connections to companies such as Biomarin attended the event. They were excited to share news about emerging treatments.

While Little People of America is primarily and a support and resource organization, and has nothing to do with research, individuals and organizations may continue to approach us, perhaps for guidance, perhaps for human trial participants, perhaps for public support. In mid-February, the Little People of America Board of Directors is scheduled to talk about the issue of so-called "dwarfism cures" at a meeting. Though the meeting probably won't allow enough time for LPA to develop a position statement on the issue, the meeting will at least afford some time for individual members to share their thoughts. Hopefully, those thoughts will lead to some organizational clarity down the road.

As an individual with dwarfism, and as an officer with LPA, it's hard to figure out a good approach. On one hand, would I, as a little person, be better off today, or would I have been better off when I was a child, if I have to endure the leg surgeries and the back treatment that were required as a result of my dwarfism. Would others in my situation be better off?

On the other hand, why should an individual with dwarfism have anything to do with an industry that treats dwarfism as a disease and people with dwarfism as a commodity. Plus, is it ethically correct to pursue drug treatments that cost hundreds of thousands of dollars. Treatments that, even if they did work, would only impact a tiny fraction of the community. So many people with dwarfism will tell you that the real obstacles they have to face in life have very little to do with medical complications. Rather, they have to do with social prejudice, and to some extent physical barriers in the environment. With this in mind, in the spirit of Ed Roberts -- a pioneer of the disability movement and of the social model of disability -- rather than changing individuals with dwarfism to make them supposedly more healthy and less diseased, wouldn't it be more productive, and more healthy, to invest our resources in creating a better, more accepting, and more accessible community.

Who knows. But as technology moves forward, it will be interesting to observe how the dwarfism community responds.

Saturday, January 21, 2012

Peter Dinklage's platform

In 2011, Peter Dinklage thrilled the dwarfism community when he won an Emmy Award for his role in "Game of Thrones." For little people everywhere, it was a break through moment. On an international stage, a dwarf was recognized for talents that had nothing to do with dwarfism. This recognition was all the more powerful because it came within the field of entertainment, an industry that is often criticized for exploiting the physical stature of people of short stature. When he took the stage, Dinklage made no reference to his dwarfism or to the marginalization of his community. But he didn't need to. Simply accepting the Emmy sent as powerful a statement as any speech could have.

Last Sunday, Dinklage took the stage again, accepting a Golden Globes Award for "Game of Thrones." This time, Dinklage made reference to dwarfism, using the platform to build support for a dwarf in England who was the victim of assault. According to news reports, Martin Henderson was celebrating his birthday at a bar when a stranger picked him up and threw him to the ground. In interviews after the incident, Henderson linked the assault to dwarf tossing, suggesting that the stranger was inspired by the English Rugby Team, which, after a match in New Zealand, participated in a dwarf tossing event. Again according to reports, the assault has left Henderson partially paralyzed.

Though what happened to Henderson is tragic, it positively underscores why H.B. 4063 in Florida must die in committee. The proposed legislation would allow Florida bars to host dwarf tossing. Arguing against H.B. 4063, LPA has claimed that dwarf tossing is a threat not just to the individuals involved, but to the entire community. Long before what happened to Henderson, others within Little People of America have come forward, claiming to be victims of assaults inspired by dwarf tossing. The Henderson incident sends a message to an international audience that all dwarfs, not just those that chose to participate in dwarf tossing, are threatened by barbaric assaults if dwarf tossing is legalized.

Monday, January 16, 2012

National Disability Leadership Alliance - 2012

This past weekend, Allison Lourash and I represented Little People of America at a planning retreat of the National Disability Leadership Alliance. The coalition is made up of 14 national disability membership organizations. The group came together three years ago in an effort to organize around national policy issues that impact the disability community. For a few reasons, LPA is not as involved in policy issues as the other organizations are. For one thing, LPA does not have a presence in Washington, D.C.. Also, LPA has traditionally been a support and resource organization. Though LPA will continue to be a support and resource organization, the group hopes to create a formal policy agenda over the next few years. This will be particularly important in 2013, when the LPA National Conference will be hosted in Washington, D.C.

While talking about the prospective 2012 policy agenda at the NDLA retreat, the groups involved searched for common ground, with each other, and around something that would resonate with the general population. Though each group represents people with disabilities, each group has a specific agenda. We searched for a way to tie each agenda together and build support from people who may not have a connection to disability. It didn't take long to find the common ground, not in a specific policy initiative, but in the experience of the individuals represented by the NDLA Committee members. The National Federation of the Blind shared a story about a couple who had their newborn child taken away from them because they were deemed unfit parents, simply because of blindness. The Autistic Self Advocacy Network reported that a seven year old autistic boy was forced by his teacher into a sack and restrained in that sack on repeated occasions because the teacher had no other way of responding to the boy's disability. I told the group about the man with dwarfism in England who, while hanging out with friends at a pub, was picked up by a stranger and thrown. He was targeted because of his short stature.

At best, these stories represent the marginalization of people with disabilities. At worst, these stories reflect that, even now in the 21st Century, people with disabilities are still targets of abuse, assault, humiliation and degradation, simply because of their differences. While these stories are all tragic, they provide a banner around which LPA and other group can rally. And they provide a banner around which we can build support for the rights of people with dwarfism and people with other types of disabilities. With that support, hopefully, we can pursue a policy agenda that will further inclusion, independence and opportunity for all people with disabilities.