Catherine Zeta-Jones and the Fantatic

Toward the end of the work day yesterday, I went to find a co-worker of mine who often talks about books. I finished reading Love in the Time of Cholera a few days ago. I didn't like it. I wanted to ask the co-worker what he thought of the book. The co-worker I asked hadn't read it, but another guy with whom I work, who overheard my question, had read it. He not only told me why he liked the book, he quoted an entire passage related to Dr. Juvenal Urbino's death. I was impressed. I thought only characters from Dead Poet's Society could quote books in such a way. In relation to the book, my co-worker, Adam, said something else. He said the author, Gabriel Garcia Marquez, is known for weaving elements of the fantastic into his stories. Adam explained that in most movies, if something fantastic or surreal happens, the event is justified by a dream or a hallucination. But in Marquez's stories and within post-modern literature, fantastic events happens as a part of waking life and the authors don't have to put the events within the context of a dream sequence or a vision. The events just happen and they don't need an explanation.

Though I am still not as happy with reading Love in the Time of Cholera as I would like to be, Adam gave me a better appreciation of the book, in particular because I have been thinking a lot about Catherine Zeta-Jones lately. Within the past few months, news broke that Jones is diagnosed with bi-polar disorder. The disability community often speaks of the differences, in terms of public stigma, between physical disability, intellectual disability and mental illness. With physical disability and intellectual disability, there is much more public sympathy. Mental illness is more often hidden, or not talked about. One reason may be fear. Some people believe that people with mental illness are more likely to commit crimes, when in fact people with mental illness are no more likely to commit crimes than people without mental illness. I think people sometimes link in proper behavior to mental health also. A few weeks ago, a woman on the dwarfism list serve shared a story about a time she was harassed at the grocery store. A few people who responded to the post theorized that the perpetrator had mental illness. If people think you are more likely to commit a crime if you have a mental illness, then it's no wonder you'd want to keep it private.

One can't really compare cancer to mental illness, but just look at the difference, in terms of public portrayal, between Michael Douglas' illness and his wife's illness. Douglas quickly earned sympathy. Instead of sympathy, much media coverage around Zeta-Jones led with a message about stigma - "Catherine Zeta-Jones Hopes to Remove Stigma Around Bipolar Disorder."

The good thing is that Zeta-Jones' diagnosis is probably helping to remove some of the stigma around mental illness. She is sending a message that the disability is not debilitating her life. She is still able to lead a productive life and she is still working. Word is she is on the short list to portray Elizabeth Taylor in a film about her life. In living a life with mental illness, Zeta-Jones is bringing disability closer to what fantasy is in the literature of Gabriel Garcia Marquez and other post-modernists -- something that happens, that is part of the story, but not something that needs to be overly explained and not something that ends the story.

Joe Roach remembered

Several years ago, a married man and woman, both persons of short stature, were featured on Oprah's show. They lived in Houston, Texas, drove a Hummer and had three adopted children. The evening after the Oprah episode, I was driving home after work on the Kennedy Expressway in my pre-1990 Mercury. Traffic was crawling along within Hubbard's Cave, so slowly it was easy to see clearly the people in the cars surrounding me. Someone in a neighboring car motioned to me to roll down my window. With my window down, the woman in the passenger seat of the car to my left asked, "Were you on Oprah last night?" I shook my head, wondering, 'does my Sable look like a Hummer?'

Such is the life of a person of a person of short stature, easily mistook for other dwarfs. It could have been worse. In this particular case, the woman mistook me for Joe Roach, a father, husband, attorney, former Houston council member. And, to me, a good role model. Sadly, Joe died earlier this week.

The Hubbard's Cave incident happened long before I met Joe for the first time, last summer at the National Little People of America Conference in Nashville, Tennessee. At the conference, he worked with a television station which produced the ABC Segment below. I don't think Joe liked me too much. I coordinate media at the conferences and I try to impose rules about what pieces of the conference are media-free zones. A few times, after telling Joe he couldn't go somewhere with the camera, he gave me a look that said, "You're kidding, right?"

With or without my media-free zones, the story turned out. But years before the conference, Joe won my admiration for how he handled a tough situation. While addressing a conference in New Orleans, the leader of Houston's Affirmative Action Program referred to Roach as a "Republican midget." Most people with dwarfism have been called midgets at some point in their lives. But I don't know how many of us have ever responded effectively, especially if the incident happened in a public arena. Referring to the midget remark, Roach said, "I want to be known as a good council member or a bad council member, not as a Republican midget." As a result of Roach's follow-up efforts, the Affirmative Action leader later apologized, served a three-day suspension, and developed a sensitivity program.

Roach's comment above underscores what disability identity means to me and perhaps others. Dwarfism, or disability, is a significant piece of our identify. But dwarfism doesn't define our actions. And all of us, no matter who we are, deserve to be judged by actions -- We want to be remembered by what we contribute or what we don't contribute to the world through our actions, not by something over which we have no control.

As a council member in Houston in 1998 Roach made it clear that he would be defined by his record, not by a slur. And because of the way he handled the situation, he has probably benefited many others besides himself.

Joe is one of several members of the dwarfism community who have died over the past year. I am sad they are gone, but I am thankful to each of them for the work they did to make the community a better place.

Lessons from England

My nine to five job is with Access Living, a disability rights and service organization in Chicago. I work on the third floor of Access Living's building. On the wall just outside the elevator banks of the third floor hangs a picture of Mat Fraser holding a cinder block and giving the camera a menacing look. In the four years since Access Living's new building has been open, probably about 10 people, both staff and visitors, have mistook the photo of Fraser either for me, or for a person of short stature.

As a result of Mat's disability, he has shorter arms, which I am guessing is why people may mistake his image in this particular photo for a little person. Though Mat is not a dwarf, I think he sets a good example for the implementation of media work that I would like to do.

Mat is an actor, musician and performer from England. Much of his work is connected to disability. On April 8, Matt gave a presentation at Access Living called Code of the Freaks. The presentation was about his work as an artist with a disability, and the differences between how he presents his work to the media, and how the media portrays his work.

Almost anyone who works in media will attest to the notion that there is often a disconnect between how stories are pitched to media and how the media presents the stories. Sometimes the disconnect is because unclear messages or incomplete messages were given to the media. Then, by no fault of the media, the story doesn't turn out the way subject hoped it might. Other times, similar to what I wrote about on April 10, the media has a preconceived idea of what the story should look like before it is written or produced.

In his presentation on April 8, Mat talked about the frustration with the media he experienced earlier in his career. He'd be in a city to perform at a local theater. As part of his publicity efforts, he'd conduct interviews with local radio stations and papers. Mat agreed to the interviews because he wanted to more people to come to his show. At the interviews, he'd want to talk about the show. But, according to Fraser, the media wouldn't want to talk about the show (if his shows are like Thalidomide-The Musical - photo below right - why they wouldn't want to talk about it I don't know). The reporters would ask about his life growing up as a person with a disability. They'd ask if it was difficult, hoping to get a dramatic story about a young man who overcame great obstacles to achieve his dream as a performer. Inevitably, the media stories never appeared as Mat hoped they would. They didn't give information about his show. They gave information about his disability.

Similar circumstances impact many stories about people of short stature. So many stories I've read include some type of cliched or punned headline like, "little person shows big heart," or "little person overcomes big odds." Headlines like this really throw the read off the original intent of the story.

Fraser went on to say how he dealt with this problem he was having the media. He began to implement guidelines. If he participated in an interview to promote a show, he refused to talk about anything but the show. If a reporter asked about his childhood with a disability, Mat would say, "I'd rather talk about the show." He said he has made some media folk upset over the years, but he has been able to assert more control over how he and his shows are presented.

I was glad to attend Fraser's presentation. In person, unlike his photo on the third floor of Access Living, there is no mistaking him for a dwarf. But I certainly could learn something from him.

I want your side of the story -- if it fits my story

About a month ago, a few days before St. Patrick's Day, a reporter from AOL contacted me. He was researching a story about the "hassles" little people encounter on the holiday. Probably each year since 2006, when I was appointed to the role of spokesperson for Little People of America, reporters have contacted the organization for a comment on the holiday. Prior to my time on the board of directors, and during my time on the board of directors, the organization had been sending the message that, for people with dwarfism who don't take gigs as Leprechauns on St. Patrick's Day, March 17 can be an anxious day. Especially in a big city that celebrates the holiday with a parade and a lot of alcohol, some little people are concerned about being approached by strangers in an obnoxious way. Just last year, I was asked if some little people might feel about St. Patrick's Day the way some Native Americans might feel about Columbus Day. I consented, saying, "Yes," some may feel that way. That reporter's story made the statement that St. Patrick's Day is a day of mourning for people with dwarfism.

When the AOL reporter contacted me this year, I thought about the story from 2010. Considering that I've never heard anyone refer to St. Patrick's Day as a day of mourning, I've never been approached by anyone in a rude way on St. Patrick's Day, and I haven't heard of anyone who has been approached in a rude way on St. Patrick's Day in the last year, I believed it was time for me to stop feeding the idea of St. Patrick's Day as a difficult time. Over email, I told the reporter that I didn't believe St. Patrick's Day to be a significant issue.

Soon after I sent that email, a different reporter from AOL contacted me over email. This was a reporter who I knew and who I liked. Previously, he covered LPA's response to Michael Steele's comment about "one-armed midgets," and we worked together on a story during the Brooklyn LPA Conference in 2009. This reporter wrote to me, "I can't imagine wanting to print this piece without LPA's perspective." I wrote back, writing not about St. Patrick's Day, but about opportunities, trying to stress that in spirit LPA is about working to open up opportunities, and that these opportunities should be available to both people with dwarfism and people without dwarfism. We wrote back and forth a couple of times. The original reporter, who first solicited me for an interview, I wrote to only once, basically telling him I didn't want to interview.

Coincidentally, Ethan and I hit the road for Freeburg, Illinois to kick-off the Midwest Advocacy Project on St. Patrick's Day. We had a lot to do that day and we had five hours of driving before we could start our work. So we woke up early. Before we left, I wanted to know if any St. Patrick's Day stories ran. As soon as I got up, I searched the internet for the AOL Story and any other stories about Leprechauns and dwarfism. The AOL piece did run. Here is a link to the AOL Story.

Rereading the story a month later, I am not as perplexed as I was when I read it at 6 a.m. on March 17. I am glad the piece included the statement about 'leveling the playing field.' But I find it weird (take that AOL 'Weird' news) that the story included this bit:

Leprechauns are a part of Irish folklore, but their association with the holiday can cause undue misery for some little people, according to Gary Arnold, spokesman for Little People of America, a support group for Americans of short stature due to dwarfism.

"Some little people still cringe when they go to a bar on St. Patrick's Day," Arnold confessed. "It reinforces the traditional stereotype that we're nonhuman."

I probably did say that. But the issue I have is that at least a year has passed since I made the statement. In a case like this, I don't know what standards apply for reporters. Maybe it's okay to use an old quote for a current story. But issues change over time. If they were just going to use what I had said about the issue previously, why did they contact me in the first place? Who knows? But I don't think it's the first time a story was written according to what an audience, or a media outlet wants, and not according to what is actually happening.