Friday, December 31, 2010
I am much more of a short-term person, and have trouble staying consistent with long-range projects. With that in mind, I am quite pleased that I've been able to maintain this blog over the past few years.
This is not the "Huffington Post" or anything like it in terms of readership but if anyone has found value in a post or a comment, I am thrilled. The blog has helped me in terms of giving myself an outlet for what happens to me and to the dwarfism and disability community.
I wasn't sure what to do with this blog in 2011, considering that my term as Vice President of Public Relations expires in June and that I write about the same stuff over and over again.
But I plan to keep it going for at least one more year. My friend Ethan from Little People of America and I are planning a spring project that will provide plenty of material to write about, and, if the project is executed well, it will probably make news beyond this site.
Also, I am considering running for President of LPA. That too should offer some material about which to write.
So, I didn't make my 2010 goal of 52 posts. But I came close and for the most part contributed on a consistent basis.
Thanks again to everyone and have a great New Year.
Wednesday, December 29, 2010
I've read just two books of Toni Morrison's, Sula and Jazz, but I call myself a fan of the author. I read Jazz first. I don't remember much about the content. I just have this recollection that reading the book was like taking a deep breath, holding the breath for a long time, then letting the breath, as well as a life's worth of emotion, out over the lines of an epic poem.
Sula I remember as a book that reinforced an important life principle. There are mores and expectations by which most of us are expected to live. How well we fit into those expectations has a lot to do with how we will be judged and remembered. Sula, I believe, goes beyond the mores and expectations to uncover what is human, and asks the reader to make judgments based not on what a community expects but based upon how closely an individual follows his or her beliefs and desires, not the principles of others.
Years ago, soon after I read Jazz, I picked up Song of Solomon, hoping for a similar book in style. But the style was much different. So much different that I couldn't continue reading the book. I recently started the book for the second time. This time, probably because I am not judging the book against Jazz, I have continued reading Song of Solomon and will probably finish it. In my opinion, what is best about Morrison is her female characters. The best female characters in Morrison's books squeeze life beyond the expectations and rules of others. Their experiences may be far removed from mine or those of other readers, but they win the sympathy of readers because they live according to what they believe in and treat others, not according to the codes developed by the communities in which they live, but according to how they would treat themselves. The problem with Song of Solomon is that Morrison focuses too much on male characters. Some of them are strong characters and sympathetic, but Morrison fails to give them the same life as her strongest leads in Jazz and Sula. They fail to become human, remaining characters on a page.
The best part of Song of Solomon is a character named Pilate, who I wish showed up more often in the book. Pilate's umbilical cord slips off as an infant, taking her belly button with it. This physical fact, that she has no belly button, shapes how other characters think of Pilate and treat her more than any other characteristic. She would grow close to people, or take a lover. But as soon as others learned she had no belly button, it was as though she lost her humanity. At one point in a passage that cover Pilate, the author writes --
It occurred to her that although men fucked armless women, one-legged women, hunchbacks and blind women, drunken women, razor-toting women, midgets, small children, convicts, boys, sheep, dogs, goats, liver, each other, and even certain specifies of plants, they were terrified of fucking her -- a woman with no navel, (p. 148-149).
In the early 1990's, in college, I wrote a paper titled "The role of height in literature and popular culture." If I had read Song of Solomon at the time, I probably would have said something about the passage quoted above. Today, though I often think and talk about specific language in the context of people of short stature, it's not use of the word midget that bothers me. It's the fact that people of short stature are a part of this long list of sexual taboos. As if there is something wrong with having a sexual relationship with a person of short stature.
It's disappointing to find a passage like that above in a story by Toni Morrison, an author I like and an author who has used art to highlight characters and lives who are members of a race that historically has been marginalized, segregated, discriminated against, and murdered because of physical difference. But I should keep in mind three things. First, the third person narrator was reflecting the sympathies of the early 1960's in the United States. And second, little people were not alone in the passage above. The sentence also included ableism and homophobia. Third, we are all human. Humans aren't perfect.
In a way, this reminds me of an idea my friend and Little People of America collegue Bill Bradford has suggested on more than one occasion, "It's a sign of progress that we are fair game, just like everyone else."
Tuesday, December 14, 2010
I've thought more about my reactions recently, and I've thought about what it means when a stranger takes my picture. I have begun to wonder if my anger isn't just about the possibility of appearing on some jerk's website. After all, chances are probably slim the person will actually post it. And if the person does, I probably would never find it. I think my anger comes from a different place.
On Monday, I received an email from a campaign called "I am Norm." The campaign is a group of young people with and without disabilities promoting inclusion and diversity by redefining what is quote, unquote, normal. In the email, the sender theorized that the most significant barrier to inclusion for people with disabilities isn't something tangible like housing, employment, transportation or education. The most significant barrier is attitudes. When people fail to treat others with respect, or treat others differently because of physical or intellectual difference (because they are not "normal"), then any level playing field of equal opportunity is lost and all of the tangible problems quickly follow. This may be where my anger lies when others snap a photo. Sure, I don't want the photo appearing on the internet. But even if the photo goes no further than the camera's card, damage has been done. Because by snapping the photo, that person has made a statement that, in his or her world, I am not normal. In fact, my presence is so removed from reality, a picture is needed to memorialize the moment. After enough people indirectly tell you that you are not normal, even if they are all jackasses, the sails generating one's confidence begin to deflate a little bit.
The only answer to this is to hope that groups like Little People of America continue their work and build a stronger community. The better that LPA does its job, the more familiar the average citizen in the United States and around the world will grow with dwarfism. The more familiar people are with dwarfism, the more "normal" it will become to see a person of short stature on the street and fewer people will freak out, grab their camera phone, and take a picture.
But what happens in the meantime? Yesterday, I was on my way back to the office from a supply store after picking up a calendar. I passed a guy on the sidewalk. Even though it was freezing cold, I could tell the guy was going to go through the effort to stop, pull out his phone and take a picture of me. I turned around. He had his back to me while fumbling through the pocket of his big parka. He found the phone, then turned around. I don't think he expected me to be standing directly in front of him, staring at him. He raised the phone up to his chest. "Do you mind, sir(sir??, really???)?" he asked. "Yes," I said. "Why?" he asked. "Because you are an asshole." (not a good way to raise awareness) I walked away. He probably still took my photo.
Though I may have re-evaluated the root of my discomfort around unauthorized pictures, I still believe, until the world does a better job of embracing differences, it's okay to confront a person with such a narrow vision of the world. Because there is nothing wrong with difference. If a person is uncomfortable around difference, than so be it. But when a person goes out of his or her way to marginalize difference, that is unacceptable.
Sunday, December 5, 2010
The preferred term for people with a medical or genetic condition
resulting in short stature. Plural is dwarfs.
Considered offensive when used to describe a person of short stature.
Dwarf is the preferred term for people with that medical or genetic
condition. See dwarf.
Last year, LPA was successfully in influencing the New York Times to change its style guide in a similar way. Note to self -- Spending time trying to change resources that are used by writers who communicate with millions of people is probably time better spent than speaking out against and trying to stop midget wrestling or a shock jock.
In the wake of the New York Times success, I have reached out to the Wall Street Journal and Los Angeles Times, with no such luck. It's often a matter of finding the correct person, someone who will listen and reply to an email. Luckily, in an organization as big as Little People of America, there will always be people like Ethan and Jimmy Korpai, individuals who are really good at connecting with the right people. Congratulations Ethan, and thanks.
Sunday, November 28, 2010
Recent news from England made me think again about the double standards. Public servants and individuals who are voted into office serve the public. Therefore, one would hope that they are aware of and sensitive to each constituency they represent. But in England, the Prime Minister, David Cameron, recently came under fire for repeating a heightist joke aimed at John Bercow, who is the Commons Speaker. Bercow is 5' 6". Evidently, the Health Minister in England, Simon Burns, crashed into Bercow's car. When Bercow said he wasn't happy, Burns responded to affect of, "Well, which one are you?"(if you are not "Happy," which one of the seven dwarfs are you.) Last June, Burns also referred to Bercow as a "sanctimonious dwarf." The Walking with Giants Foundation (the one representing people with primordial dwarfism), responded quickly, and Burns apologized.
This past week, when talking with reporters, Prime Minister Cameron repeated the "Happy" incident, and the joke, to a group of journalists. The Walking with Giants Foundation again responded. In a public statement, the Foundation said, "It was bad enough having a minister of health make similar distasteful comments but to have the Prime Minister himself glorify the comments in a joke is totally unacceptable and downright appalling." The Foundation has accused Cameron of harassment and has called for talks with the Prime Minister.
I think that people of short stature should hold public officials to different standards. The goal of Little People of America and other groups that represent people of short stature is to impact a world in which people with dwarfism have access to the same opportunities and can live in equality with people of average, or typical, stature. In reality, people of short stature, in the United States, in England, and around the world, are often treated, or viewed, differently than the rest of the population. If we are to have any chance of achieving our goals, we need Prime Ministers, and all elected officials, working with us, not against us. Congratulations to the Walking with Giants Foundations for holding Cameron accountable.
by a group representing people with primordial dwarfism
Sunday, November 21, 2010
I find the board's decision interesting in the context of some stipulations that were placed on the permit approval. During the course of debate around the issue, board members implied that they don't want the decision to be about morality. They wanted to make the decision based upon safety and economics, not based on their opinions of right and wrong. If that is the case, than why did the vote come with the caveat that Bannerman's may never use to the permit to host jello wrestling or mud wrestling? Unless, the chance of injury during a jello wrestling match is greater than the chance of two little people injuring themselves while stapling and thumbtacking each other in the forehead.
Sunday, November 14, 2010
With this in mind, later in 2006, when I joined the board of directors for LPA, I made an unofficial and very personal pledge not to protest against other little people who make employment decisions that I believe may harm the public perception of little people. In addition to the idea that I shouldn't cast a subjective opinion on the decisions of others, I also thought time and resources would be better spent if we focused on positive, systemic changes -- for example encouraging style guides, dictionaries to identify the word midget as negative. In my position with LPA, I often get calls from newspapers in small towns where the Half-Pint Brawlers, or another group called the microwrestlers, are booked. The reporters ask for my opinion about the wrestling show. Trying to keep the pledge in mind, I usually just focus on the word midget, expressing concern about what message the word might send to the audience.
But the pledge was broken a month or so ago after I learned about a bar in Bartlett, Illinois that is trying to bring in the Half-Pint Brawlers. In order to do so, the bar needs to secure an events permit. The owner of the bar had to appear before the Bartlett Planning Commission, then the village board in order to earn approval for the permit. Just before the planning commission meeting, I asked a group of people to reach out to the commission and ask the members to reject the permit request. I am sure it had much more to do with local residents who don't want the bar hosting events for reasons that have nothing to do with midget wrestling, but the planning commission recommended that the bar not receive a permit. But the planning commission doesn't have the final say. It only makes recommendations. The village board actually makes the decision. Just before the village board met a few weeks ago, I reached a larger group of people, asking them to send a note to the board. Turns out, no vote was taken at the meeting. They only talked about the issue, and heard directly from the leader of the Pint Size Brawlers. A vote is scheduled for this Tuesday, November 16. According to a newspaper article, the bar has the support it needs from the board, and will get the permit. In the article, at least one of the board members said the decision shouldn't come down to morality. The board members shouldn't cast ballots based on whether or not a little person should or not participate in such an event. I wonder though, if, instead of little people, the performers were members of marginalized ethnicity or race, and they promoted use of slurs against that particular minority, at what point morality would come into play.
Monday, November 8, 2010
This year, the Chicago Humanities Festival integrated four or five events with a strong disability narrative into its festival showcase. One piece of the programming was a performance of GIMP, a project of Heidi Latsky Dance. GIMP (here is a review in the Chicago Tribune) is a modern dance routine that includes about six dancers, at least three of whom are people with disabilities. I had seen GIMP in 2009, the only other time it was performed in Chicago. I was very excited to watch the performance again. I am not a huge fan of modern dance or any type of dance. But to me, GIMP embodies the vision of disability rights. The dancers perform upon a stage on which disability and non-disability are equal and integrated. But for a few minutes of the performance when I believe the audience was forced to focus on one dancer's disability, the routine is not about trumpeting disability. It's about bringing together on one stage people who want to dance and people who have worked very hard in order to dance.
Of course, by its very nature, the performance forces an audience to examine disability, or at the very least examine the notion of the body. After the performance, the dancers all returned to the stage for a question and answer session with the audience. During the session, the founder of the company, Heidi Latsky, talked about the dancing world. She, and a male dancer, explained that traditionally, dance is about people with exquisite bodies (tall, slender, toned) perfecting very nuanced, delicate and athletic motions. But with GIMP, the stage is filled with dancers whose bodies don't fall under the traditional norms of exquisite. The dancers showcase both the 'normal' and 'impaired' pieces of their bodies. One dancer said that the project is about moving the pieces of our bodies that are vulnerable. Vulnerable because society teaches us to hide the disabled, or less exquisite, pieces of ourselves and showcase the most high functioning piece of ourselves. With that in mind, another dancer said that people with physical disabilities are taught to operate between the chin and the top of the head. In other words, let the mind compensate for what ails the body. GIMP highlights the body, no matter the body type. I think the challenge is creating a piece of work that, standing alone - separate any connection to disability, is beautiful. Except for the moment of the routine I mention above, I think they did it.
For how thrilling I thought the performance was last night, what may stick with me longer than memories of the dancers moving on stage is another message one of the dancers sent during the question and answer piece. At one point he said something to the affect of, "inhabit your body like never before." He meant be proud of it. Show it off. Use it. For all marginalized groups, but for purposes of this blog, especially people with dwarfism, those are very important words. By popular culture, and by the community in which we live, too often people with dwarfism are delivered a message that our bodies are, at best, something to hide, and at worst, the punchline of a joke. Unfortunately, this message is often delivered with about as much candor as a frying pan pounded over our heads. Keeping the words of the GIMP dancer in mind is easier said than done when confronted with bigotry. I certainly can't do it all the time. But if one is able to remember the words, even in the face of pain, I think it makes a difference. And until the rest of the world reflects the stage on which GIMP is performed, those words will be an important resource.
Sunday, October 31, 2010
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.
Wednesday, October 27, 2010
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.
Wednesday, October 20, 2010
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.
Sunday, October 17, 2010
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.
Saturday, October 9, 2010
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.
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.
Sunday, October 3, 2010
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.
Wednesday, September 29, 2010
His statements triggered thoughts of my efforts with Little People of America. From an advocacy standpoint, a major goal of Little People of America is to change people's attitudes about people of short stature. On websites, youtube, and the streets, attitudes that view little people as nothing but a punchline or comic relief still exist. The statement of my co-worker at the staff meeting made me question the work of LPA, "is it the wrong approach to try and change the attitudes of people who think a little person walking down the street constitutes entertainment?"
I think the answer is no. The person who made the statement at the staff meeting has written a book, teaches high level courses at the University of Illinois at Chicago, and sounds a lot smarter than I do when he speaks. As a result, he made me question what I and others have been doing since 2006 with Little People of America.
But I think what the professor said, and what LPA does, are quite similar. Although I think of LPA as trying to change attitudes, we can't do that without changing systems. If we approached the webmaster of a site that demeaned people of short stature, he or she would probably either ignore us or laugh at us. We couldn't change that attitude because the webmaster lives in a world in which little people are nothing but dehumanized objects. In order to change the behavior of the webmaster, we'd have to change the world in which he or she lived, opening up his or her perception of little people to one of people with full personalities, characters and lives. That's not to say individuals within LPA never respond to offensive comments or actions of people or establishments. But in doing so, we are not only trying to change what the entity thinks or does (attitudes), we are trying to open up the world in which it exists (systems).
In terms of language, I think the professor made a good point. For example, use of the word midget. Is LPA better off attacking any entity that uses the word out of ignorance and malice? or influencing the creation of systems that don't use the word (getting the word phased out of style guides, identified as negative in dictionaries, etc..). But in both cases, in order to change an attitude, the world around the attitude must be changed first.
In the end, I don't think it matters if we refer to the work of Little People of America or other groups as changing attitudes or changing systems. What really matters is if we are doing our best to create an inclusive world that embraces diversity.
Friday, September 17, 2010
Monday, September 6, 2010
Hopefully, with the passage of health care reform, there will be better answers. Though the pre-existing section of health care reform doesn't take affect until 2014, starting September 1 of this year, at least in Illinois (and I hope other states) there is what is called the federally-funded temporary high risk pool. According to the website (people from Illinois can apply for coverage on this website), "the federally-funded high risk pool will provide transitional coverage to 2014 for the currently uninsured with preexisting conditions."
Though health care reform, especially the pre-existing conditions part, is promising for people with dwarfism, there is still concern that insurance companies will find some sort of loophole to deny coverage or will charge unaffordable premiums. I have no information that proves this won't happen, but at least, for now, people with dwarfism and other types of pre-existing conditions have a legal and a legitimate tool with which to work.
Tuesday, August 31, 2010
At work this morning, a co-worker said, "Gary, yesterday I heard some terrible news." From the tone of her voice (the kind of voice that says 'I personally believe this is bad news but it's also fairly petty), I knew about what she referred. For the past few days, I had read internet reports that announced the sixth season of "Little People, Big World," would be the last. My co-worker was a big fan. She had just heard the news. "Say it isn't so," she moaned dramatically.
I'll bet thousands, if not millions, of people around the world share my co-worker's remorse. I don't study ratings, but it seems that over the past five years "Little People, Big World" developed a significant following. Because of the show's popularity, millions of viewers were exposed to the lives of little people, an exposure that has delivered messages about dwarfism to counter traditional stereotypical messages about little people. Each week, viewers saw a family of little people live their lives. While there were many dwarfism specific pieces to their lives, the show presented them as people, which is more than can be said about some of the less than tolerable appearances of little people on television -- a generation ago and even today.
Many times over the past few years, as spokesperson for Little People of America, I've been asked to give my opinion of reality television. Each time I've tried to deliver the message that "Little People, Big World," and the other reality programs featuring little people, send a positive message to the world - a message that dwarfs are just like everybody else, trying to live productive, successful lives and do good in the world.
But with each passing season of "Little People, Big World," grumbling about the onslaught of reality television featuring dwarfs has grown louder. More and more voices have expressed concern that reality television, rather than saving little people from social discrimination, is just a new form of exploitation. Reality television, like "midget" wrestling, side shows and "midget" cities is just an avenue for putting dwarfs on display because of their physical difference. There is probably an element of truth to this. But even if reality television perpetrates exploitation of little people, I still think the general population wouldn't be where it is today, in terms of social awareness about dwarfism, without reality television.
No matter what I think about the gains of the dwarfism community, strong opposition is beginning to take shape against reality television. With this in mind, as the organization Little People of America begins to respond to voices that are asking the organization to examine and define its relationship to entertainment, I think it's probably a good thing that "Little People, Big World" is winding down. Because if LPA does develop a new policy about what kind of entertainment is allowed or not allowed at organizational events, the voices organizing against reality television would insist that reality television be included within the umbrella of "entertainment." That's probably a good thing. Because the rules would have to apply objectively (if objectivity is possible).
That doesn't mean applying the rules wouldn't be hard. Though I think national LPA conferences are for the membership (not fans of reality tv or reality tv stars), if LPA does come up with a strict policy about entertainment, it would be strange to take the rules that apply to auditioning for munchkins at conferences and apply them to filming "Little People, Big World" at conferences. But it might make for good tv.
Friday, August 27, 2010
The problem is deciding what is stereotypical, or stigmatizing representation of people of short stature. LPA as an organization does not want to do anything to promote stereotypes, or worse, contribute to the dehumanization of people of short stature. But how can the organization make a concrete determination of what is a stereotype? Because it is impossible to make an objective determination of what is a stereotype, and for many other reasons, the organization has not developed an official statement or policy that distances the organization from stereotypes, at least not at this point in time.
Thinking about the relationship between use of the m-word and stereotypical representation of little people, I found the article attached to the link below very interesting. The article is about a young woman who appears in the reality program called “The Pit Boss” on the Animal Planet Channel. The program follows a guy who runs an operation that rescues pit bulls and also manages an agency that hires out little people for entertainment. The entertainment is usually elves, munchkins or something like that. Many people pushing for LPA to speak out against stereotypes would identify elf and munchkin as a stereotypical, stigmatizing role. For that matter, some people would put reality television in general into that category, arguing that many little people reality programs have been created not because of who we are as individuals, but because of what we are – dwarfs. I found the article interesting because the woman interviewed speaks out adamantly against the m-word, but she used to perform in roles such as elf and the Charlie and the Chocolate Factory Characters – the Oompa Loompas. She takes no issue with these representations. In the article she says, “I never had that issue of people stereotyping me. I don’t think if you’re in an Oompa Loompa costume that it’s going to change anything.” Of course, opinions differ. That’s why I think the organization can’t develop a policy based upon opinion. If an organization creates a policy statement around “stereotypes,” how the policy is implemented will change from year to year according to the opinions of the board. Others have said that policy statements aren’t meant to please everybody. They take a stand on a particular issue. People on the opposite side of the issue may be left angry and disenfranchised.
I don’t know where the current discussion will lead. With the policy against the m-word, with our media commentary, and with our proactive outreach, I think the organization is doing a pretty good job of presentation a well balance image of people of short stature and challenging social stereotypes (this is a very biased point of view). And at this point, LPA will not have any involvement with the traditional stereotypical dwarf industries ( e.g. Radio City and Elves) unless we have diverse representation from other employment industries as well. I personally feel that if we adopt a policy that applies to the membership of the organization, we need a policy that applies to all groups and individuals equally, and does not ask for subjective judgment from a rotating membership. But that’s only my opinion.
Here is the piece from an online journal about the young woman with dwarfism.
Monday, August 9, 2010
The conference provided a space for siblings of people with disabilities to share, in formal and informal settings, concerns about issues facing people with disabilities and how those issues relate to siblings of people with disabilities. In some ways, the spirit of the conference reminded me of Little People of America Conferences. While there were presentations, breakout sessions and board meetings, the conference was really about bringing together all of these people with shared experiences. When you go through life facing specific challenges and frustrations, there is something very empowering about coming face to face for the first time with others who share those challenges. On an intellectual level, you learn a lot. But emotionally, you are able to take a deep breath to gather the energy you to go back out, deal with the challenges, and more importantly, try to make the world a better place.
On one level, my favorite part of the conference was meeting Chris Burke, the actor who played Corky on "Life Goes On." I sat at the table next to his during the first full day of the conference. After lunch, which was served in a big ballroom in the midst of conference presentations, hotel staff brought huge plates of cookies to each of our tables. By the time the cookies were served, I was the only one left at my table. Everyone else had gone off to various other activities. Seven or eight people still sat at Chris' table. A few minutes after cookies were served, the cookies at Chris' table were nearly all gone while the plate at my table was still full. Chris quickly caught on. Twice during a presentation about sibling issues in Japan, he stood up, walked over to where I sat, leaned over my shoulder and grabbed a cookie. I've always been thrilled by literal and figurative brushes with greatness.
I really liked the show "Life Goes On," but more important than meeting Burke, the conference resonated in the context of my life with dwarfism. The Sibling Leadership Network was set up by siblings of people with developmental, or intellectual, disabilities, and the conference for the most part focused on developmental and intellectual disabilities. But technically, my brothers, who are both average height, are siblings. And though the issues that people with dwarfism face are different from those facing people with developmental disabilities, my siblings, and siblings of other people with dwarfism, would probably benefit by networking with other siblings. Throughout my childhood, I rarely spoke with my brothers about dwarfism, but it was a huge part of my life and there is no way it didn't impact their lives.
But in some ways, the issues of the different disability types do overlap. The issue of "attention" was raised over the weekend. Children with disabilities often get more attention than their siblings. Not many years ago, a friend of mine, who has two boys, one with and one without dwarfism, said that her child without dwarfism, in a moment of frustration, once cried out "I wanna be a little person." Unlike his brother, the son without dwarfism didn't get a national conference and two regional conferences around which his family planned vacations every year. If family vacations were planned around my brother and not me, I'd be upset also.
Speaking of attention, on the train to downtown Chicago, after the flight from Connecticut arrived at O'Hare aiport, Katie and I ran into about four or five young women. They jumped on the train just a few stops before Katie and I got off the train. They were probably leaving LaLapalooza, the music festival that was wrapping up in Grant Park. When Katie and I stood up with our luggage, getting ready to step off the train, one of the young women noticed me for the first time. She leaned over, said something to another, who then looked at me, giggled and passed it on to the others. I couldn't hear what they said. Katie was a little closer. She said she only heard one young woman say, "That's the cherry on top of my day."
When Katie stepped by them to go out the door, she said, "settle down." When I followed, I picked one of young women, looked her in the eye, and said, "grow up." It's little experiences like this that really underscore the need for a sibling group for brothers and sisters of people with dwarfism. With Katie, I am able to talk to her, and ask her what she thinks and feels when stuff like this happens. But when I was younger, I was probably too embarrassed and perhaps angry to ask my brothers. But I imagine they noticed what was happening and I imagine they would have wanted to share with someone who could relate to the experience.
Thursday, July 29, 2010
I’ve come to get used to the stares and the taunts from strangers. Sometimes I hardly even notice and more often my husband is oblivious. It is part of his life and comes with the package. A package deal of being with someone with dwarfism. Shorter arms and legs is the only difference, yet seems “freakish” to most. I’ve come to anticipate a spectacle that strangers create when we walk down the street and live our lives. The points and laughs and inappropriate questions and invasion of personal space are all par for the course. There are some “teachable moments” and other humiliating interactions. It can feel like a test—a test of character and will and power and control and love. This has become common and part of my life.
Yet this experience at the park is distinct. I stand, dancing to the music by myself while my husband, Gary, sits on our blanket. Pointing, the taunts begin: “You’re fake—you’re not real!” They echo over and over. This is a new one, I think, what does it mean? The look of fear clues me in and I bend down to talk to a little girl of about 5 years old: “It’s okay, there is nothing to be afraid of. This is my husband and he is shorter than most men.” Gary attempts to engage the little girl: “What’s your name?” he asks. “He sounds like a robot!” she screeches to her friend before racing off.
Gary and I exchange a confused look and shrug the whole thing off. I continue to dance and try to urge him to join me, to no avail. Hundreds of people are scattered around us on blankets and in chairs enjoying the evening. Each group of people is in their own cocoon as the surround sound speakers at Millennium Park create a buffer of music between conversations of groups right next to each other. I try to take it all in and appreciate Chicago in the summer.
About five minutes later, the children are back. Two super cute girls of only 5 or 6 years command our attention as they march toward my husband on a mission. I wonder if they will ask the typical questions that kids often ask: “Why are you short?” Or “how old are you?” Or maybe the more pointed: “What’s wrong with you?” All of which Gary has much experience responding to. Curiosity, after all, is natural, for children and adults alike.
The kids point at Gary and begin shouting taunts and laughing at him. The girl in the red dress takes the lead while the other girl hesitantly follows, learning as she goes. The taunts go on…and on and on…and on. Gary smiles at the girls and tries to engage them by asking questions—a strategy that usually works and helps humanize the situation for him and them. The taunts continue. I bend down with a smile and begin talking to the girls, trying to stop their broken record through education or mere distraction. Yet, they are singularly focused on making fun of Gary. We try various tactics to dissipate the uncomfortable situation and extract ourselves from this annoying onslaught and disturbance. I begin to feel helpless when nothing is breaking the dynamic. This situation is going from uncomfortable to miserable with no end in sight.
The one tactic that hasn’t been used yet is anger, yet it begins bubbling inside me. This is a last resort because I’ve learned that once you tip into that territory there is often no turning back. Stern words can often be effective, but if they are not, you can be left in an emotionally vulnerable state without many other options left at that point.
“Where are their parents?” I wonder silently, and then a woman appears. “Are they okay?” she asks me. I look at her with wide-eyed wonder. “I’m their mother,” she explains. I consider my response before replying in a measured tone: “No, they are being extremely annoying.” Now she mirrors my previous wide-eyed wondered look. I briefly reflect on the relentless nature of these children’s taunts and conjure a picture of bully’s on the school playground. This is a rare and disconcerting interaction that I have little experience with. I take an honest approach with the mother and tell her, “Children are often curious, which is natural. But these girls are not, they are being mean.” Her mouth gapes in horror and she says, “I’m so sorry, what do I need to know to follow up with them?” I look at her with empathy, she seems like a mother trying to figure out a difficult situation and wanting to teach her children to be respectful and to embrace difference. For they are different: from each other and from most families as a mixed race family. I imagine reading the mothers mind thinking how her adopted children may encounter situations like this themselves and her horror at them being the cause of such an occurrence.
As I speak with the mom and provide her some information to “follow up,” her girls continue to mock my husband. She can’t hear what they are saying, even standing a short distance away, due to the sound buffer created by the music. Only Gary can hear their exact words as they are eye-to-eye and in his face. But I can tell from his expression that it is not pleasant. I quickly finish talking to the mother and she jumps into action, bending down to the girls and telling them to stop and come with her. They are gone and I stand there baffled at what just transpired.
What probably lasted two minutes, seemed like an eternity. A wave of disgust washes over me and I can’t wait to get home and take a shower. Inside, I’m furious that we had to experience that. I’m furious that we weren’t able to stop that. One of the most disturbing aspects was how relentlessly mean-spirited these girls were at such a young age. I question what else we could have done to avoid or dissipate that. I question my own competence and power and control and love. That was upsetting. And I can’t quite get my head around it. All these thoughts stew in my head while I sit back down on the blanket next to my husband. Everyone around us does not seem to have noticed anything, insulated by the music in their individual cocoons. As the music continues, we cuddle up in our own cocoon and continue our evening and continue our lives.
Sunday, July 25, 2010
With the memories of the 2009 Parade still fresh in mind, I looked forward to the 2010 Disability Parade. Judging from the number of people in the Chicago area who said they'd march with LPA, I thought we'd have our largest LPA contingent ever. I looked forward to an experience even more empowering than 2009.
The weather threatened to interfere with my parade hopes. The night before the parade, the skies opened up with a furry. From my bedroom, the rain pounded against my windows. Lightning flashed and thunder roared throughout the night. In some areas of Chicagoland, more than five inches of rain fell within just a few hours. So much rain that at least one Chicago expressway and two train lines shut down.
Though not as hard, the rain still fell in the morning, discouraging many people who signed up for the parade to leave their homes. Many wanted to come, but couldn't make it downtown because of the flooded highways and "el" tracks, (fortunately, I live just a few blocks from the parade step-off area).
As the parade started, I put my Access Living (a disability non-profit for which I work, with a large contingent in the parade) shirt over my LPA shirt and jumped up on the organization's float. The Chicago Disability Pride Parade has been around since 2004, but this was the first year I rode on top a float. It might not be the same as riding in the Gay Pride Parade with the Stanley Cup, but I got a thrill out of waving to the crowd along with about 30 other Access Living staff, consumers and volunteers on top of the float, especially when the driver, for reasons unbeknownst to me, periodically gunned the engine to about 20 miles per hour.
At Daley Plaza, the end of the parade, I jumped off the float and ran about a block back down the street to where my wife stood along the parade route. For the past few years, rather than march in the parade, she has organized groups of people to come cheer the parade. She stood at the corner of Dearborn and Madison with our friend Tekki, a local LPA member who cheers along with Katie. "I couldn't find anyone else from LPA," I said when I stood before Katie and Tekki.
"There they are," Katie said, pointing south down Dearborn.
"Let's go join them!" Tekki said. We started back down Dearborn, waving to the four members of LPA as the gap between us closed. After Tekki and I joined the group, Tom quickly explained what happened, then the six of us started marching again. Since we were the last group, several police squad cars, and a police van, which served as parade escorts, were right behind us.
Considering the number of times that I've explained how empowering the 2009 parade was (twice here and many other times to anyone who will listen to me in person), I was a bit overwhelmed when I looked up at the remaining two blocks between our group and the end of the parade. It's one thing to be surrounded by other screaming groups within a parade. But this year, we were all alone. The next to last group had nearly finished. It's not like thousands of strangers lined the street like the Saint Patrick's Day parade, but a lot of people were out and about, and everyone of them, many with cameras, was looking at us.
But I soon channeled my feelings into my memories of 2009 and of the excitement leading up to the parade. As we moved north up Dearborn, I waved and shouted out, "LPA," "LPA." When our small group reached Madison, Katie ran out from her perch on the corner, took our photo, and shouted "you gotta do a cheer." None of us knew any "LPA" cheers, so Katie suggested we do the traditional, 'gimme an L', etc. So we did. And some people along the curbsides joined us, cheering us as we passed -- cheering us for who we are. Not, as many people of short statured have experienced at times in their lives, jeering us for what we are not (average stature). It was pretty cool.
Thursday, July 22, 2010
Sunday, July 11, 2010
I was nervous when Kathy Martinez, Assistant Secretary at the Office of Disability Employment Policy at the Department of Labor, took the podium for the keynote address at the 2010 LPA Awards Banquet. I hate to underestimate the crowd, but in my experience, I don't remember there ever being a keynote address at an awards banquet. Usually, the program included the relatively quick presentation of scholarships and service awards, then it was on to the dance. My trepidation had to do with the fact that a keynote address would add more time to the program and with the potential content of Martinez' address. I figured she would talk about the larger disability community and LPA's role within it -- an important topic but on the whole but I think LPA is still working toward embracing the identity of disability.
Secretary Martinez quickly calmed my fears. She stepped up to the microphone and roared out a "hello LPA!" with a delivery that reminded me of Robin Williams in Good Morning Vietnam. After securing the crowd's attention, she tried for the admiration of the crowd by recognizing LPA's reputation as the best party organization within the disability community. She added that LPA also was earning a reputation for using the media and popular culture to shape positive images and messages about dwarfism specifically and disability in general. Though credit is due more to the individuals behind the camera in shows like "Little People, Big World," and "The Little Chocolatiers," she acknowledged LPA for using reality television to promote positive messages.
Throughout her speech, Martinez shared anecdotes about her experiences at conferences for the blind community. Poking fun at her own community, Martinez explained that "On the first day of a blind convention. You recognize voices from across the room of friends you haven't seen for a year. You are so excited to reunite with your friends, you room across the room to say hello, knocking over buffet tables and innocent bystanders along the way." Martinez told the story much better, and much funnier. As she shared the anecdotes, I thought about how important it is for people with disabilities to tell stories in their own voice, and how different the story may have been coming from Fred Armison (aka Governor Patterson of New York) on Saturday Night Live.
Martinez ended her keynote with a call to action, challenging LPA to take shaping positive images a step further. "You've been able to work in front of the camera," she said. "Now it's time to take it behind the camera." She said the LPA has taken the opportunity to appear on television in roles and situations created for us. But now it's time to create our own opportunity and our own roles. As she challenged the audience, I thought about how many times a year I receive emails from producers looking for individuals to cast in the next reality show that happens to include little people. Looking forward, instead of waiting for the next email about the next "great idea" for a reality show, LPA and the dwarfism community needs to come up with our own ideas.
Thursday, July 8, 2010
Here is a link to local coverage of the conference in Tennessee.
Sunday, July 4, 2010
Saturday, July 3, I sat all day in a board of directors meeting. Though the organization has accomplished some positive work over the past year, the meeting was pretty standard, filled with reports of what had happened in the past 12 months, and requests for funding to make similar achievements in the year to come. I wish the organization were at a point when annual meetings were spent developing a bold vision for the upcoming year. For example, setting goals that would position the organization in Washington D.C. or setting a clear plan for creating a full time staff to work on policy issues.
Today, Sunday, July 4, I sat in on a meeting of the Medical Advisory Board, a volunteer group of doctors and geneticists who consult for Little People of America. The board is a huge value to the organization. Each member offers free consultations to members of LPA during the conference. Without the MAB, some LPA members would never have access to a doctor with experience in the field of dwarfism. During the meeting, the board addressed a few very serious issues, like a 66 percent rate of hypertension among males with achondroplasia and a five percent mortality rate among achodroplastic dwarfs under five years of age. Without the Medical Advisory Board, I am not sure what group would pursue the concerns, and if another group did, would LPA have such close access to the group?
That being said, I couldn't help but think of the dichotomy between the medical model within LPA and the model within Access Living, where I work my nine to five job. Under the theory of the medical model, it is doctors who know what is best for a person. Under the medical model, a person's disability, or impairment, is something to be fixed. At Access Living, advocates strive to give voice to the person with a disability, not the doctor. At Access Living, it is not the doctor, but the consumer, that knows best. Access Living fights against the medical model.
On the other hand, here are a few examples of the strength of the medical model within LPA. Speaking about the mortality rate and the importance of screening young dwarfs, a doctor on the board said, "there is no substitute for clinical judgement or a clinical exam." Another example is a workshop led today titled "Quality of Life." Each presenter was a member of the Medical Advisory Board. Finally, the board was critical of a workshop on hearing loss organized without any input from the Medical Advisory Board. The workshop was run by a person who has experienced hearing loss. As I sat in on the Medical board meeting, I imagined what some Access Living advocates might be thinking. I wondered if they would speak up? I was in no position to, nor did I think it a good idea. While a person who has experienced hearing loss is certainly qualified to speak about the subject, and a quality of life workshop should include someone outside of the medical profession, there is room for every "model." The difference between the existence of models within Access Living and LPA underscores the importance of taking the best of both models.