Breakthroughs?

Earlier this month, a company called BioMarin announced a new drug program that could reverse the physical affects of achondroplasia. According to the news release, the drug (BMn-111) "is an analog of C-type Natriuretic Peptide (CNP), a small cyclic peptide that is a positive regulator of bone growth. It is produced and has a receptor in the growth plate, and along with the fibroblast growth factor receptor 3 (FGFR3), regulates normal bone growth." Much of the release included scientific and, interestingly, market, language I don't understand. But from what I do understand, it looks as if studies of BMN-111 have shown that the drug reverses affects of achondroplasia in mice, and that a 'clinical trial' of the drug won't begin until 2012. My favorite part of the release I believe emphasizes that the statement, in my opinion, is more about the economic market than so-called scientific progress. Evidently, what the release says about achondroplasia is considered a 'forward-looking statement.' According to the release, "Stockholders are urged not to place undue reliance on forward-looking statements." I'd like to know if people of short stature are supposed to rely on the statement. More pressingly, I'd like to know what we are supposed to think about the statement.

In terms of so-called scientific breakthroughs, this is the not the first one relating to achondroplasia. In the 1990's, scientists identified the gene that carries achondroplasia. At the time, people wondered if the discovery would lead to fewer parents of average stature carrying their child to term if the embryo was identified to carry achondroplasia. A decade and a half later, I don't know how many parents are aborting pregnancies because of dwarfism, but, as far as I know, eighty percent of people of short stature are still born to average height parents. About ten years after the dwarfism gene was discovered, a procedure called Preimplantation Genetic Diagnosis was announced. Through the procedure, a parent could select from a set of fertilized eggs, theoretically allowing a parent to select quote unquote healthy eggs. Soon after the announcement, Little People of America released a position statement on PGD. The LPA statement focuses on choice, saying if such a procedure is offered, people must have the option to implant any available, whether or not it carries dwarfism.

I am no scientist, and have no idea what 15 or five years means in the scientific breakthrough community. Is a decade an eternity or barely a heartbeat? It seems to me that both the gene discovery and PGD, to this point, have had relatively little impact on the community. This probably has a lot to do with costs. My guess is that BMN-111, if it develops, will have little impact on the coming generation of children with achondroplasia. That said, I am still troubled pgd, BMN-111 and any scientific announcement that implies dwarfism is a disease better avoided or cured. For thousands of people living with dwarfism, their families and friends, and their future children, dwarfism is a culture. As a culture, both dwarfism and general, we are better off investing, not in drugs that make mice bones grow, but in legislation like Kennedy Brownback, anti-bullying measures that cover a range of marginalized groups, disability and dwarfism awareness initiatives, and accommodations, all in an effort to equip people with dwarfism to pursue the same opportunities offered others.

sexual representation

This entry is a follow-up to the October 20 entry -

After Paul Miller died last week, Joseph Shapiro wrote one of the obituaries. The obituary ran on the National Public Radio blog. Shapiro, who wrote No Pity, a book I referenced in the last post, now works for National Public Radio. The obituary mentions the L.A. Law character, played by David Rappaport, based on Paul Miller. The obituary also tells a back story about which I was not aware. Though the Rappaport character may have been based upon Paul Miller, Miller was not happy with the portrayal. In fact, because Miller believed the portrayal could be damaging to the perception of people of short stature, he wrote a letter-to-the-editor to the New York Times. In the letter, Miller praised L.A. Law for raising the issue of dwarf-tossing, which, according to Miller, treats dwarfs as if they are objects and perpetuates stereotypes against little people. But because the Rappaport character hires a prostitute, and indicates he would have no love life without a prostitute, Miller writes

the character Hamilton Schuyler, a successful lawyer who is a dwarf, states that the only way for him to find companionship is to hire a call girl. This message offends me. A dwarf, like anyone else, dates, falls in love, gets married and has children. Many dwarfs are married to other dwarfs, whom they meet through Little People of America, and many are married to average-size people. To imply that no one would want to have a relationship with a dwarf is inappropriate and wrong.

Twenty years after this particular episode of dramatic television, many other popular culture images of little people, and of little people in romantic situations, have emerged. From reality television, if no where else, the television public has been delivered messages of dwarfs in love and dwarfs who are married, sometimes with dwarf partners and sometimes with typical height partners.

But when it comes to fictional representations, the troubling image of the dwarf as unlovable still lingers. The movie In Bruges has earned some praise. I believe some of it comes from people within the dwarfism community because the movie includes a little person who for all intents and purposes is just "a regular guy." But the sexual portrayal of the little person is no different from the sexual portrayal of the little person from the L.A. Law episode. The movie stars Colin Ferall, a hitman hiding out in the Belgium town after a job. In town just one day, the Ferall character lands a date with an attractive woman hanging out on a movie set. Meanwhile, the little person character, who has been in town much longer, hires a prostitute for companionship.

To be fair, if Colin Ferall and I liked the same woman, Ferall would probably have a better chance to get the woman's attention, even if I had a whole month to work my magic compared to his one day. But nevertheless, with such fictional portrayals of a dwarf's sexuality, 20 years ago and today, it was no wonder my mother worried about how I might spend my money.

What Paul Steven Miller meant to me

Years ago, my mother and I watched an episode of L.A. Law that featured dwarf tossing as a story line. I don't remember all the details, but the Jimmy Smits character represented the plaintiff. A little person actor named David Rappaport defended the bar owner that hosted dwarf tossing. The court ruled in favor of the defense, freedom of choice being the key issue. After the ruling, the Smits character and the Rappaport character go out to dinner. Evidently, Rappaport had a recurring role on the show and the two lawyer characters developed a friendship. Rappaport shows up at the restaurant with an average size woman as his date. At one point during dinner, when the woman excuses herself to use the bathroom, Smits leans over to Rappaport and says something like, "She is fantastic! Where did you meet her?" The Rappaport character, with no modesty whatsoever answers something like, "She is actually a call girl." At this point, in the Arnold family room, my mother, full of concern, turns to me and says, "I hope you never hire a call girl." Fully embarrassed, I shrugged. At that point in my life, I fully believed my romantic chances with women were non-existent. More so because I was a dork than because dwarfs didn't fit the American standard of sex symbol. In hindsight, at my mother, I should have screamed, "Just because he's a dwarf doesn't mean all little people hire call girls."

Because Rappaport died in 1990, that episode must have been at least 20 years ago. But thinking about Paul Steven Miller, who died of cancer yesterday (October 19), I was reminded of the episode. I think I had once read that the Rappaport Character on L.A. Law was based on Paul Miller. Luckily the legacy of Miller in my own mind goes far beyond any episode of L.A. Law. Whether identified as part of the dwarfism community, the disability community, the legal community or the political community, Miller's achievements stand alone. Serving under the Presidential administration of Clinton, Bush the second (I think), and Obama, Miller played a critical role in the disability movement, giving voice to the rights of people with disabilities and giving people with dwarfism a voice within the disability community.

I met Miller a couple of times, at Little People of America conferences in 2002 and 2007. He was nice and treated me like an equal. Not long after the 2007 conference, Miller appeared on National Public Radio. He was interviewed about Preimplantation Genetic Diagnosis. He defended the right of people with dwarfism to use pgd to purposely implant an embryo that carries the dwarfism gene. The most significant memory I have of Miller is nothing he said to me, or what I heard him say. It is of what Joseph Shapiro wrote about him in the book No Pity. No Pity is about the disability rights movement. In one section, Shapiro writes about Miller's long and arduous ordeal of applying for positions at one law firm after another following law school. Even though Miller must have been more qualified than most other applicants, time after time he was denied a position because a dwarf didn't fit the image of a lawyer. Shapiro writes, "he was rejected by each of more than 40 law firms where he interviewed. Finally, an attorney in a Philadelphia law firm explained that, although the partners were impressed by his credentials, they feared their clients might see Miller in the hallway 'and think we're running some sort of circus freak show,'(p. 28)."

If you are a person of short stature, one would think it would be devastating to realize that, 'if Paul Miller, who graduated from Harvard Law School, faces this kind of social discrimination, what chance do I have?' But far discouraging, the section about Miller was very empowering to me. I had just started working at Access Living, a strong player in the Independent Living Movement. To me, Miller's experience epitomized the main principle of the independent living movement. Yes, people with disabilities face physical and social barriers. But the root cause of those barriers is not the individual with the disability. It's the society in which the person with the disability lives. That said, people with disabilities and people with dwarfism don't have to change who we are in order to work through the barriers that stand between us and fulfilling lives. Instead, we have to change the societal systems that create those barriers.

As a person with dwarfism, who believed that he had been the victim of some sort of prejudice at one time or another in his life, it was comforting to learn that Paul Miller had experienced the same prejudice. Miller's experience gave me more energy and enthusiasm to identify with dwarfism and disability, and rail against the barriers standing between disability and full participation in the world. For that, I will always be grateful.

A protest that wasn't really a protest

In my opinion, Tucker Max lives up to his self-proclaimed reputation of 'asshole.' The front page of his website reads,

My name is Tucker Max and I am an asshole.

I get excessively drunk at inappropriate times, disregard social norms, indulge every whim, ignore the consequences of my actions, mock idiots and posers, sleep with more women than is safe or reasonable, and just generally act like a raging dickhead.

Though I wouldn't recommend reading anything of his books, I've sought out the chapters in his books that deal with little people. For him, sleeping with a little person was just another chapter in his life of being an asshole. In addition to sleeping with people in order to build a resume, it appears that he treats everyone with whom he comes into contact and about whom he writes like garbage. Little people were not spared. In his stories, little people are not people. They are objects for his ridicule, amusement, and, in one case, list of different women with whom he has had sex.

A week ago Friday, Tucker Max appeared for a book signing at a Borders Book Store along the Magnificent Mile in Chicago. The signing promoted his new book, Assholes Finish First. I read about the event the Thursday before the book signing. When I heard about it, I wanted to do something. I realize that protesting against Max in order to prove what he has already confessed to (being an asshole) is not worthwhile. Any protest would probably wind up as a chapter in his book or an entry on his blog. But his visit deserved some kind of recognition.

The only way to get rid of someone like Max is to get rid of his audience. If no one cared what he had to say, he wouldn't sell any books and he wouldn't be able to publish any more books. Unfortunately, many people do read what Max has to say. And unfortunately, Borders carries books not based upon what they contribute to humanity, but based upon how many are sold.

Though Max is a despicable person who shares despicable stories about objectification, misogyny and cruelty, I was most upset with Borders Books when I thought about the reading. They are driven by profit, but they could choose not to sell the book. And by all means, they could chose not to host a book signing.

Some people excel at protests. I don't. A few years ago, when I organized some protests outside of a Chicago bar that hosted midget wrestling, I was a wreck for days leading up to the protest. I could barely sleep and my nerves ate at me continuously. With that in mind, I didn't have it in me to organize a Borders protest, especially not with only 24 hours notice. Too bad, because logistically, a book signing at a place with narrow aisles presents a lot of opportunity to shut down an event.

But I wanted to do something, or make some kind of protest, pathetic as it might be. So on the day of the book signing, which was scheduled for 7 p.m., I walked over to the Borders in the middle of the afternoon, (it's just a few block from my office). At the register, I asked for a wristband (anyone who wanted an autograph from Max had to have a wristband). With the wristband, I could have returned at 7 p.m. and confronted Max. But, like I say above, that would have only given him more material, (I also didn't have the courage). I didn't return. I just kept the wristband, hoping that maybe I took the wristband of an unfortunate person who may actually enjoy reading what Max writes.

I still have the wristband. I plan to send it back to Borders, along with my Borders Card. Maybe, with more time, and more motivation, scores of people could have been rounded up to secure a wristband and return it to Borders.

On the website, after proclaiming himself an asshole, Max writes, "But, I do contribute to humanity in one very important way. I share my adventures with the world."

Hopefully, someday, Borders and other bookstores will make an important contribution to humanity by refusing to sell anything by Max.

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.