Monday, December 22, 2008
On the subject of politics surrounding the new presidential administration, last week, President-elect Obama announced Arne Duncan, the CEO of the Chicago Public Schools, as his choice for Secretary of Education. Similar to many other communities around the country, much of the disability rights community rallied around the election of Obama. His victory on November 4 sent a wave of excitement through the community, particularly when Obama said the words disabled and non-disabled in his acceptance speech.
Since the November 4 victory, also similar to many communities around the country, the disability community has been furiously organizing in an effort to voice the concerns of people with disabilities when it comes to presidential appointments and policies. As Obama fills out his cabinet, concern lingers. While I am not a political expert and don't know the politics of most people tagged by Obama, my work in Chicago has exposed me to the politics of Duncan.
Though Duncan has earned a national reputation as a reformer through his work with Charter Schools, the record shows that disability reform has lagged behind.
My hope is that, with pressure and with help from the disability community, Obama, and members of his cabinet, including Duncan, will fulfill the hopes of the community raised during the election.
Sunday, December 14, 2008
Because many people of short stature spend a good part of our lives isolated from other people of short stature, we are raised to adapt to the challenges and obstacles of the world around us, rather than organize with others who share a common struggle to make the world around us more accommodating. While these skills are useful, they indirectly encourage us to shoulder the responsibility when things don't go our way, even if in some cases the responsibility lies with an intolerant or inaccessible community in which we live, not with us. On an individual basis, these skills may allow us to get by, but they don't empower us to thrive, or to make positive systemic changes to the community.
With these thoughts in mind, I was happy to read a recent essay by Bill Bradford, Little People of America's Vice President. The essay, Column: Reaction to dwarfism shows that low glass ceiling still affecting us, made the case that societal barriers to acceptance and barriers to success for the community of people of short stature are very real, pointing to unemployment rates, salaries based upon height, and the lack of positive role models in the public and political spotlight.
I think it's important for leaders within LPA to make such public statements, statements that challenge people of short stature to make positive reforms to a society that sometimes is biased toward difference, rather than encourage people of short stature to try to change who they are.
Monday, December 1, 2008
The issue begs a lot of debate within the community of people of short stature. The problem with the "Good Morning America" story was that it eliminated any debate. It failed to present the depth of the issue and in so doing supported the idea of changing our bodies in order to fit in with the world, rather than working to create a more inclusive world in which we are not pressured to change our bodies.
On Sunday, November 30, the Washington Post Magazine ran a new story about limb lengthening. Though, similar to the "Good Morning America," the Post story focuses on a young girl who decides to undergo limb lenghtening surgery, this story is very comprehensive, covering all sides of the issue, including interviews with a young woman who chose not to have the surgery.
Sunday, November 23, 2008
I hope the boxers are successful, and hope the attempt to create a league is successful as well. Whether it be boxing, wrestling, or any other sport, anybody has the right to pursue their interest in the sport, whether the person be short stature or non-short statured.
Friday, November 14, 2008
The Americans with Disabilities Act, signed by George H.W. Bush in 1990, delivered to people with disabilities the right to receive long-term care services in the most integrated setting. Under the law, and under the 1999 Olmstead Supreme Court Ruling, people with disabilities have the right to receive services in either an institutional or a community based setting. While many other states have implemented the ADA's integration mandate, Illinois lags far behind. Thousands of people are forced to live in institutions because community options don't exist. In institutions, people not only lose the chance to pursue educational, employment and social opportunities offered in the community at-large, they lose control over basic decisions, such as when to get up, what to eat, what to do during the day.
In 2005, a coalition of groups filed a complaint against the state of Illinois on behalf of people with developmental disabilities living in Intermediate Care Facilities. Yesterday, the two parties agreed to a settlement. This was a significant step toward realizing the promise of the ADA and Olmstead. Under terms of the agreement, over the course of nine years, thousands of people with disabilities living in institutions who want out will get the opportunity to live in the community.
Still today, as our world becomes more inclusive, people with disabilities struggle with the stigma and reality of segregation and discrimination. This legal victory brings the community a bit closer to reversing that reality.
To to read the news release issued by the groups representing the disability community, visit
Thursday, November 6, 2008
On paper, Obama had always been the better disability candidate, offering a detailed platform on issues regarding people with disabilities, including co-sponsorship of the Community Choice Act, support for the Individuals with Disabilities Education Act, and sponsorship of the 2007 Mental Health Parity Act. McCain has failed to support the Community Choice Act, has voted against refunding of the Individuals with Disabilities Education Act and proposed a health plan that would eliminate Mental Health Parity in 45 states. Also, Obama’s Health Care plan would prohibit insurance companies from denying coverage to people with preexisting conditions, an issue very important to many people of short stature, some of whom have been denied coverage because of dwarfism. McCain’s health plan does not prohibit insurance companies from discriminating against people with pre-existing conditions.
Though Obama’s platform included support of issues important within the disability community, he had failed to stimulate public consciousness around disability, and had failed to rally the disability community under the banner of civil rights. For years, disability advocates nationwide had urged political leaders to change the landscape of disability issues by shifting the focus of disability from special needs to civil rights. For as long as disability remained a special needs issues, then programs and services designed around disability would carry the stigma of charity and the reality of segregation. But the rights of people with disabilities are not charity. They are civil rights, deserving of the same attention as the rights of other social minority groups who have fought for their place within the country’s social and political culture.
Before the Democratic National Convention in Denver, Chicago ADAPT, a grassroots disability rights group, met with Kareem Dale, Obama’s National Disability Vote Director. Through Dale, ADAPT urged Obama to go beyond support for the issues by incorporating disability in his speech at the Denver Convention speech or by inviting a person with a visible disability to speak in prime time at the convention. On the final night in Denver, a rumor spread that a woman in a wheelchair would be among the group of people invited onto the stage following Obama’s nomination acceptance, but there was no one with a visible disability on stage, nor was there any mention of disability in prime time.
One day after the Democratic National Convention, Senator John McCain introduced Governor Sarah Palin as his Vice Presidential running mate. Overnight, the Republicans did what the Democrats would not, bring national attention to disability. The country soon learned about Trig Palin, the Governor’s four-month-old son with Down Syndrome. While Palin embraced her child, positively presenting disability as an issue that touches us all at some point in our lives, the Republican’s message underscored archaic attitudes toward disability. Rather than present people with disabilities as a social group with civil rights similar to those of other protected classes, Palin, at the convention and elsewhere, spoke publicly about her support of children with “special needs.” The message “special needs” reinforced traditional stereotypes that people with disabilities are a class in need of the country’s pity and charity. Though public exposure of disability generated some hope, McCain’s poor record combined with Palin’s antiquated message made it clear that if the Republicans were to affect the disability movement in any way, the movement would be backwards, not forwards.
As the campaign dragged on toward November 4, Joe the Plumber drowned out disability in the Republican camp. The Democrats remained silent. Then, on Election Night, the nation voted Obama into office. When he took the stage in Grant Park, Obama’s brief mention of disability released a wave of emotion within me. My body shivered and I yelled with delight, high fiving my future wife, who sat next to me on the couch and was just as thrilled. The next day at Access Living, a disability group where I work, conversations revealed that others felt the same way. All day long, I overheard people exclaim triumphantly, “Did you hear him? He said disabled and non-disabled!”
Disabled is just a word. But within the boundaries of groups struggling for independence and empowerment, words carry enough weight to either drag down or support a community. Uttered from President-elect Obama’s lips on November 4, disabled sent a message of inclusivity and empowerment, identifying people with disabilities as one of the many threads that contribute to the fabric of our society and deserving of the benefits, protections, rights and opportunities our society offers.
Saturday, October 18, 2008
Though the limb lengthening procedure is considered a controversial subject, Little People of America has stayed neutral on the issue. The organization released a position statement that neither condones nor condemns the procedure. Rather, the statement urges individuals to thoroughly investigate the risks and benefits of the surgery before making a decision. Basically, similar to other issues that could be called controversial, such as embryo screening and careers in entertainment, LPA emphasizes options, asserting that people of short stature have the right to pursue all available options and should be supported in their quest to learn about all available options.
The "Good Morning America" story followed the thought process of Tiffanie Didonato
that led to her decision to pursue limb lengthening. According to the story, the decision can be traced back to an incident that happened when Tiffanie was 15 years old, when a teacher put her on the spot in front of her peers, asking about dwarfism, which the teacher referred to as a 'disease,' and how it affected her life. Tiffanie reflected that it was the first time in her life someone had referred to her as a dwarf. The reporter then goes on to say, "The interaction was etched in her brain and, shortly afterward, Didonato decided to adapt to life, since life didn't adapt to her." For Didonate, "adapt to life" meant limb lengthening surgery.
Obviously, the stigma that Didonato's teacher placed upon dwarfism, along with the fact that no family member, pediatrician or doctor had ever raised the issue of dwarfism with Tiffanie, would create a problem for any 15 year old who is forced to confront their own difference for the first time. It is perfectly understandable that Tiffanie, or any teenager, would want to fit in. The problem is that "Good Morning America" celebrates Didonato's decision to "adapt to life," without questioning the circumstances that led Didonato to this decision.
For me, a person of short stature who has worked within the disability rights movement for about ten years, Didonato's statement reflects the differences between the medical model and the independent living model. Within the disability community, the medical model identifies disability as a condition that needs to be fixed. If the person with a disability wants to access to the same options available to people without disabilities, then the disability needs to be fixed. The medical model puts a negative value on disability, targeting disability as something that needs to be changed.
The independent living model identifies disability as a natural part of life that will affect each of us at some point. In this case, if a person with a disability wants to live an independent lifestyle, we must address physical and social barriers to accessibility, not necessarily the disability. With independent living, there is nothing wrong with disability. The problems are found in places such as -- physically inaccessible structures and services; and social prejudices unable to accept difference.
Didonato's limb lengthening decision reflects the medical model. The fact that her dwarfism was ignored, and the fact that her teacher identified dwarfism as a 'disease,' taught Tiffanie that there is something wrong with dwarfism. Naturally, when given the choice, Tiffanie pursued the opportunity to change her dwarfism.
The problem with the "Good Morning America" story is that dwarfism is not a disease. The story never explored the independent living angle of dwarfism. People with dwarfism, just like people with many other types of disabilities, are able to live healthy, independent lives, often times without any significant accommodations. The challenges that many dwarfs face don't have to solved with limb lengthening. Physical barriers can be solved with pedal extensions, step stools and reachers; and social barriers can be addressed through aggressive outreach and better diversity programs in schools and the workplace. Rather than present this side of the issue, "Good Morning America" celebrated Tiffanie's decision, embracing the idea that dwarfism was the problem that Tiffanie had to solve.
There is nothing wrong with Tiffanie's decision. The problems are found within the circumstances that influenced Tiffanie's decision. The problems are found within stories like those run by "Good Morning America" that stigmatize dwarfism.
Monday, September 22, 2008
The Fall 2008 Action was in Washington D.C. From September 13 - September 18, the advocates practiced various forms of civil disobedience to underscore the housing crisis facing so many people with disabilities. Because of the lack of affordable, accessible and integrated housing, and because of antiquated long-term care systems that force people with disabilities into nursing homes, thousands of people with disabilities find themselves warehoused in institutions or homeless.
Early on the morning of the 15th, the advocates stormed the lawn of the Department of Housing and Urban Development, where they set up a tent city they named "DUH" City. Using DUH city as their base, teams of ADAPT members marched off to various Washington locations, occupied the offices of key political leaders, and demanded that Washington recognize ADAPT's housing platform.
Throughout the week, many of the advocates were arrested. Most of them probably didn't get much sleep, or get much hot food. And, most probably made more enemies than friends while they were in Washington. But none of the ADAPTers went to Washington expecting to make friends. They went expecting to start a conversation, without which there would be no change.
For more information about ADAPT, visit www.adapt.org
Click here for ADAPT's housing platform.
For a much more detailed account of the ADAPT Action, visit Joe Stromando's blog
Saturday, September 13, 2008
To me, coverage of the Paralympic games in Beijing represents what is best about media portrayals of little people. Too often in popular culture, whether the portrayal of dwarfism is positive or negative, the representation of little people is defined by the subject's dwarfism. When this is the case, it’s hard to separate dwarfism from anything the person does, both the accomplishments and the setbacks.
With the Paralympic coverage, Uhl and Popovich, just like all the other competitors in the games, are athletes who have trained their entire lives for the chance to race. Dwarfism is secondary, almost like the home town of an athlete – something to be proud of, but something that takes a back seat to the determination, skill and work that propelled the person so far.
The one bad example I know of came from the Sydney Morning Herald. On September 10, the Herald ran a story titled “Dwarfs rule the pool.” The story is embarrassing, first debating about what language to use to describe dwarf athletes, and then later wondering why other media doesn’t mention dwarfism. At one point, the reporter writes, “The BBC news reports on her, shown on TV in Beijing, made no mention of her achondroplasia, or dwarfism. What a pity. It makes her more interesting, not less.” Then later, “American women, Erin Popovich and Miranda Uhl, have won also gold, but a reporter for The New York Times does not mention their condition in his stories.” The writer suggests that other media is afraid to mention dwarfism, as if that would bring negative attention to the athletes’ stature.
But that’s where the reporter gets it wrong. For the Herald Reporter, just as it is often the case in popular culture, the story was all about the dwarfism. But the real story, as some of the Paralympics media understands, is about the person behind the dwarfism and their accomplishments.
Tuesday, September 2, 2008
Casting agencies, production companies and television networks often send requests to various people who are members of Little People of America. Fortunately, many of these requests are opportunities to raise positive awareness about people of short stature. But some requests reflect the antiquated practice of objectifying people of short stature because of their difference in appearance.
Just last year I took a phone call from a business in Florida. The business wanted to hire a little person to greet a traveler at the airport. "Why don't you hire a limo service?" I asked the caller. "Because (the traveler) likes little people," the caller said. Obviously, based upon stereotypical portrayals of people of short stature, the business, or the traveler, found the simple appearance of a little person to be amusing.
Marching around New York City as "Chucky" probably isn't going to help the prejudicial attitudes of the Florida business, or the traveler. In fact, if the modeling agency successfully hires 50 little people, I fear what happened to the filmmaker Steve Delano will become a reality for many more little people. Steve Delano is a little person who made an autobiographical documentary called No Bigger Than a Minute. The documentary chronicles Delano's personal history as a dwarf, and also addresses broader social issues that touch the community. At one point in the film, Delano relates a particularly humiliating experience of a stranger screaming out, "Chucky, Chucky, Chucky!!!" when the stranger saw Delano on a subway platform. Poor Delano wasn't dressed up as Chucky. He was just trying to get somewhere on the train.
Delano relays the story about Chucky and other personal experiences as if he is sharing an inside joke with the audience, because he knows that even if his anecdote is specific only to him, it is an experience to which all people of short stature and their families can relate. It was easy to laugh at Delano's Chucky anecdote, but if more and more people start telling similar stories after the release of the Child's Play DVD, laughing won't be as easy.
All dwarfs have the right to pursue their interests and their needs. That includes the right to earn money portraying the character Chucky on the streets of New York City. But I look forward to the day when modeling agencies and businesses from Florida stop approaching Little People of America in search of dwarf "talent."
Until that day comes, I am proud of LPA members who, instead of ignoring the requests, respond with their concerns. In the case of the Chucky request, several members wrote back. One person wrote, " Can you imagine yourself or one of your colleagues agreeing to do this? Our members (whether persons with dwarfism themselves, or parents of dwarf children) regard such a prospect as dehumanizing, as well as harmful to the dwarfism community’s public image."
Hopefully, if we continue to express our concerns, the inquiries in search of little people to dress up as limo drivers at the airport will decrease, and calls from filmmakers such as Delano in search of little people to tell their stories will increase.
Monday, August 25, 2008
For "everyone except very tall people. Unlike the cultural rules for weight or ethnicity or looks or disability, the social mores for height still allow bystanders to stare and say whatever they’re thinking. Which for a very tall person, let alone a giant like Sandy Allen, means: “Wow, you’re really tall!” (possibly while whipping out a cellphone camera).
Of course, Arriane is not completely correct. While people who are above average in stature may be the focus of mocks and jeers, they are not alone. Many people with disabilities, including people of short stature, still earn the unwanted the attention. This oversight is not the only incorrect piece of the article. Just one paragraph above the section quoted above, Cohen wrote,
"But the circuit dried up in the 1960s, when audiences began seeing giants not as magical creatures but as sufferers of a medical ailment. Zoo-style objectification — of hair-covered men, of midgets — was out of fashion. It was the era of civil rights: We’re all the same on the inside, and we’re going to treat people as equals."
If Cohen is attempting to build emphathy around physical differences in humanity, she is not going to get much support from the dwarfism community if she continues to use the word midget. But nevertheless, the article was empowering in so far that it was about a person who is strikingly different from people of short stature in a physical sense, but who has much in common with people of short stature in a cultural sense.
The complete article can be found at this link:
Thursday, August 21, 2008
Disability advocates argue that Stiller's portrayal of Simple Jack demeans people with intellectual disabilities, and that repeated use in Tropic Thunder of the word "retard," a word that carries a negative connotation similar to, if not stronger than, the word "midget" for the short statured community. Groups such as the Special Olympics and the American Association of People with Disabilities protested outside the film's Los Angeles premiere. East coast advocates staged a similar protest for the New York City premiere.
Though the protests have earned incredible media attention, each day there are more reports of national exposure, few within the film industry and few film critics I know of support the efforts of the disability community. When questioned about the protest, Stiller and other actors defend their work, explaining that the film is meant to satirize the egos of actors. They insist that the language and the scenes are meant to make fun of the lengths actors will go for attention and credibility, and in no way are meant to poke fun at the disability community. Most film critics appear to follow a similar line of argument. In his review of the film in the Chicago Sun-Times, Roger Ebert didn't mention the disability community's concerns. Many film critics who do mention the protests appear to brush off the disability concerns, suggesting that the word "retard" is only a word, and that the disability community has failed to interpret the true intent of the film. My favorite are the scores of people who have weighed in on youtube, who also claim that people with disabilities have given to much value to the weight of words. Yet, these youtube critics seem to relish their own frequent use of the word "retard" to describe the disability critics.
It's easy to argue that we often put too much value on the weight of words. It is easy to argue that words depend upon the context and the intent in which they are used. But when the actors, the film industry, the pundits, and the youtube prognosticators defend their use of offensive language, they fail to recognize the real power of language. Just as they justify use of certain words because of the context in which they are used, they fail to recognize the power of the word within the context of the lives of people with disabilities.
There are certain words that are not accepted in movies anymore, or in popular culture. It doesn't matter if the film is a comedy, drama or thriller. Defenses such as satire, context and freedom of speech simply won't stand up to these words because of their long history of hatred, racism, bigotry and contempt.
Today, the disability community campaigns to add the word "retard" to this list of unacceptable words. The organizations and individuals who protested and who continue to protest Tropic Thunder worry that the film might damage these efforts. That the film might anoint the word "retard" with acceptance. Already, there are reports of merchants selling tshirts with the phrase "Never go full retard."
But I am encouraged. While the film may motivate huge numbers of young people and older people to use offensive language, and perhaps purchase offensive merchandise, more people now than ever before know the damage that the "r" word can wield. This may not stop everyone from using the word, but it will make some people stop. And those who do decide to use the word will no longer be able to hide behind the excuse of ignorance or satire.
Monday, July 21, 2008
I think the piece is especially interesting in the context of the entire Weekend America program that particular day. Earlier in the program, a different reporter interviewed two contractors currently living and working in Afghanistan. The reporter asked the contractors what they do for fun. The contractors told a story about throwing this party, for which they wanted to hire two Afghani midgets (word used by the contractor) for entertainment. The reporter responded in a joking, amused tone, "You wanted to hire two midgets?" Then something like, "were you able to find the midgets?"
After listening to the entire program, I emailed Mark, saying something like, "Wow, this is interesting. You have John Moe, an NPR reporter completely troubled by objectification of little people in popular culture. But earlier in the program, you have a different NPR reporter talking about hiring little people and casually using the word midget as if both are completely acceptable and common." Mark wrote back, telling me that a disclaimer at the beginning of the program warned listeners of offensive language, i.e. -- midget. He quickly added though, that just a few years ago, the very same National Public Radio ran a review of The Dollhouse, a stage production starring Povenelli and two other little people as the three male leads, which threw around the word midget as casually as Jimmy Kimmell would.
Wednesday, July 9, 2008
The event is historic for Little People of America as well. As a sponsor of the event, LPA has taken an important step in terms of coalition and community building with other members of the disability community.
In 2007, Andy Imparato, the President of AAPD, attended the LPA Conference in Seattle. At the General Assembly, he said that as a disability specific membership organization, LPA has the opportunity to wield important influence within the larger disability community. I agree. I think the July 26 Forum is a chance for LPA to follow up on his comments -- to raise our voice, express our concerns, and lend our support. Hopefully, July 26 will be just one of a series of events in which we participate with others in the disability community.
Tuesday, July 8, 2008
Last year, Tom and Laureen Lash, of the Windy City Chapter of LPA's District Six, organized the first ever LPA Parade Contingent. My girlfriend and I marched with the contingent proudly wearing our "Dwarf Republic" Tshirts, (thanks Ben Sailor). There were only four or five of us in the group, but I felt as empowered as ever I had before with a group of people with disabilities. I wish I had organized an LPA group back in 2005 or 2006. Though I won't be in Chicago for the parade this year, I hope Tom, Laureen and others represent LPA.
Monday, July 7, 2008
As an adult who has spent many years with LPA, I feel the conferences grow stronger and stronger. The strengths and weaknesses of individual conferences may vary from year to year, but as we get older, most people of short stature change our perspective. The idea of a conference changes from "what will this group do to help me?" to "what can I do to make our communities a better place for people of short stature?"
The week-long conference is a prime time to share these ideas and brainstorm about ways to confront the physical, social and systemic barriers that stand in the way of people of short stature.
Moving in to my second term as Vice President of Public Relations, I am excited that two new members have joined the board. Members who I met when I was a young adult within LPA and who I have shared a friendship with for many years. Along with the entire board of directors, I am very excited to implement our strategies for the coming three years. Strategies that will strengthen the board, increase support and communication among the membership, and increase awareness about people of short stature throughout the at-large population.
Monday, March 24, 2008
Later that day, as I thought about what happened, I thought a lot about midget wrestling. I used to protest outside of bars that hosted midget wrestling. I have no problem with wrestling. But when an African American wrestles, it is not called Black Wrestling; when an Islamic person wrestles, it's not called Muslim wrestling. If a little person choses to wrestle, it should be called wrestling. Otherwise, it's no different than when little people were objectified for entertainment value.
I still think midget wrestling is wrong, and when reporters ask questions about it, I will tell them what I think. But that night, I decided that I shouldn't spend any more time on little people who I believe make bad decisions. Instead, I wanted to spend time on little people who make what I believe are good decisions. I wanted to spend time sending positive messages about the community of which I am a part. It's the positive images that will cut down the number of ridiculing YouTube Videos. It's the positive images that will force a bar owner to question his or her decision to host midget wrestling.