Monday, December 12, 2011
Recently, I have been reminded of that panel discussion. I think about it nearly every time a new story pops up about "Life's Too Short." I don't know if I should say it's unfortunate or not, but most everything I have read about "Life's Too Short" has been negative. Rather than pointing out hilarious situations that dwarfs find themselves in, the new show, according to the commentary I have seen, reinforces archaic stereotypes of dwarfs as nothing more than visual gimmicks and non-human objects about which to make fun.
Here is an interview from England's Guardian media outlet with the mother of young child of short stature. The mother laments the new program, and the message it sends about little people. In this article from The Sun a young woman who chose to have leg lengthening surgery because of the bullying she has endured criticizes the show. The article says of the young woman undergoing limb lengthening, "Not surprisingly, Sanika isn't a fan of Ricky Gervais's controversial new comedy, Life's Too Short."
In the past, I often alluded to the reality program, "Little People Big World," praising the show for presenting a well-rounded view of dwarfism and the lives of people with dwarfism. I rarely watched the show, except for when I visited my parents, who had cable. I based my opinions on the few episodes I watched, and upon what I read about the show. A few people criticized me for praising the show so openly. They thought I could have looked at the show and judged the show, and the people on the show, more objectively, with a more critical eye. I still think "Little People Big World" has positive merits, but the people who issued criticism were probably right. Perhaps I could have looked at the show with a wider lens.
It would be hypocritical of me to withhold judgement on "Life's Too Short," because of criticism I received based upon my reflections of "Little People Big World." If I am going to praise one show based mainly upon what I have read about it, why can't I be critical of another show based mainly upon what I have read about it?
I can't answer the question. Perhaps a few people would listen if I did answer the question but I am sure no one is sitting around his or her computer, waiting for my criticism or praise of the show. For one thing, I am not a critic. What I think does not make much difference. For another thing, like I pointed out a few paragraphs above, perhaps I am not objective enough, or thorough enough, in my reasonings.
I may not be qualified to issue opinions, but nevertheless, I do enjoy the space that this blog gives me to write about this type of issue. That said, even though it is clear that many, many people are upset with the message that "Life's Too Short" is sending, I just keep thinking of sitting on the panel with Warwick Davis, and wondering if we sat on a panel today, what he would say to the young woman who had limb lengthening surgery.
Wednesday, November 30, 2011
I was reminded of that story today on my way to work. While on the train, I read an article called "Steve Jobs: An American 'Disgrace.' The story talks about a factory in China where laborers manufacture Apple products. According to the story, the conditions at the factory included "thirty-four hour shifts, beatings, child labor, an epidemic of suicides." The story went on to say that"Faced with a public relations problem relating to suicides, the company installed wire mesh on the factory windows to stop workers from jumping..." Based upon this story, published in The Nation, working at the Dwarf Theme Park is a dream job.
Though I have learned the importance of perspective, Little People of America and dwarf advocates should not turn our backs on institutions in this country and around the world that limit opportunities for people of short stature. In other words, if popular culture treats people of short stature like an inanimate object, a joke, or something less than human, it may have an impact on how the general population relates to people of short stature, and it could impact mainstream employment, education and social opportunities for people of short stature. Our job is to broaden the general population's perspective of people of short stature. We need to deliver the message that people of short stature are full and equal participants in the general population. The more this happens, the more people in the general population will embrace dwarfism as a natural part of a diverse population. If we are able to get that far, then more mainstream opportunities will open up for people with dwarfism.
Again, though I have learned about perspective, I don't think that a young man in China who dances a jig for the amusement of tourists at a dwarf theme park is going to change the attitude of a legal partner in the United States who needs to hire a new associate and who believes a male lawyer needs to be more than five feet tall. If anything, the theme park would reinforce the partner's misguided assumption of what a lawyer should be.
But we have no idea what circumstances led the person in the China to the job. And we have no idea what circumstances that person would be in if he didn't take the job. All we can do is try to keep in mind that each of goes through life with a different set of choices and a different set of opportunities, and to do our best to do what we think will open up those choices and opportunities.
Sunday, November 13, 2011
I've submitted to the Reader four times. Only once have they run something I wrote. I wasn't surprised when a week passed and I hadn't heard anything about my submission from the paper. Another week passed and I received an email from the Reader. The email acknowledged that they had received my correspondence, but made no mention at all of the story I had submitted. Instead, the editor asked if I would like to be interviewed for a weekly feature of the paper. Each week, the feature highlights a random person in Chicago, and tells a story from that person's perspective. The feature is framed as "first person accounts from off the beaten track." I agreed to participate. When I asked how to prepare for the interview, the writer told me something like, "you don't need to prepare. We are just going to have a conversation."
When I later interviewed with the reporter, I told her a story about riding my bike around Chicago, and strangers taking my picture while I am on the bike - something I've written about, perhaps too often, here. Though I was instructed not to prepare for the interview, I knew I would tell the biking story. The story ran a few weeks ago.
I am not sure why, probably because the piece exposes some vulnerability, and some fear, I was hesitant to share the story. Soon enough though, the piece was shared widely, including social media pages of my friends and on the Little People of America Facebook page.
The majority of the direct feedback has been very positive. Friends have been very supportive. I received a great email from a colleague of mine. The email included the subject line, "give me your camera bitch." I shared that email with the writer of the piece, saying, "no matter the other responses, feedback like this makes the whole experience worth it." In general, people I know are very nice. They tend to keep negative feedback to themselves. Just the other day, someone asked, "What did you think of the story in the Reader?" I said, "generally, I feel good about it, and generally, the response has been very good." To this, the person asking the question had no verbal response. He just looked at me. Though he didn't say anything, his face appeared to strain, as if he were putting all his energy into keeping negative thoughts unspoken.
I wouldn't trade in the positive feedback from friends and supporters, but the piece in the Reader has another value also, for me anyway. It's given some validation to the anger I sometimes feel when I am treated poorly for something that I have no control over, and when other people of short stature are treated poorly for what they have no control over, our physical difference. For years, I've tried to develop a strategy to deal with people who take unauthorized photos of people of short stature. There really is no good strategy, because there will always be a few people who act that way. Whether I confront or ignore them, it won't change what they have done. But sharing the story in the Reader has helped to legitimize the frustration I feel.
When I first started to work at Access Living, I learned about the Independent Living perspective. The perspective reframes problems of physical and social accessibility. The perspective says, people with disabilities should not have to change who we are in order to function and thrive in the world. Instead, we need to change the world in order to make it more inclusive of all people, with and without disabilities. In a way, the Reader piece has helped me reframe the biking experience. In all likelihood, I will have my picture taken again, and in all likelihood, that is going to piss me off, but it's going to be easier to shrug off that anger now. Easier because I know that in my work at Access Living, and with Little People of America, I am doing my best to open the door to a world that is inclusive of, and embraces, diversity. But if the people who are in the car snapping those photos want to be a part of that world, it is up to them to put down that camera and shed some bigotry in order to fit through the door frame.
Friday, October 28, 2011
Yesterday, everyone on staff where I work participated in a Cultural Competency seminar. The seminar was designed to equip staff to work better with each other, with the consumers with whom we interact, and with other groups with which we work. The idea was that sometimes tensions exist between all of these parties -- Tensions that derive from diverse cultural backgrounds and experiences. The seminar was like a good class that I would sit through during my years in college, in so far that the seminar really got me thinking. But more so than anything else, the seminar got me thinking about the tensions that I confront in my day-to-day as a person with dwarfism.
Similar to my days as a college student, I took some notes during the seminar. I wrote down a bunch of things said by the facilitator. She said, “If you want to be in a world that works for everyone, you have to be willing to jump into the scummiest ponds.” That got me thinking. I wonder what that means for a person with dwarfism on the worst of days? A letter posted recently on the Washington Post blog referenced anecdotes from Bob Whittemore. Whittemore is a person with dwarfism. He wrote to the Post because he is against Florida legislation that seeks to repeal current legislation that prevents bars from hosting dwarf tossing events. He shared anecdotes with the Post. Whittemore wrote,
Have you ever, after a productive day of business, walked into a bar with your colleagues and customers to celebrate the day, and are suddenly grabbed by a total stranger who wants to pick you up and throw you as far as he can, because it would be a “hoot”?
This is one reason why Little People of America and many others are against the repeal legislation, because something as obscene as dwarf tossing affects many more than just the people directly involved. But beyond legal protections, how does one confront this type of behavior on an individual level? In order to create a world that works for everyone, do people with dwarfism need to submerge ourselves within the dirty ponds?
The facilitator also said yesterday, “The best way to deal with intolerance is to get related to people.” Does that mean we need to walk around in the shoes of the intolerant ones who treat people with physical difference as mere objects?
As distasteful as it sounds to give intolerance some room to maneuver in order to understand it, I think the facilitator is correct. If people with dwarfism, and other groups that are subjected to discrimination, are going to make change, we have to understand where and who the discrimination comes from, and why. But just because we make an effort to understand the roots and motivation behind discrimination and intolerance, it doesn’t mean we have to stop fighting against it.
Wednesday, October 26, 2011
As most everyone knows, on October 3, a Florida State Representative introduced legislation, H.B. 4063, that would undue protections against dwarf tossing in Florida. Reaction to the news from the dwarfism community was spontaneous and immediate. While scores of people took to Facebook to express their pride, joy and empowerment after news of Peter Dinklage’s Emmy Award last month, scores, if not more, launched Facebook posts full of contempt toward the idea of allowing again an activity that is an insult to the dwarf community.
Many people also shot off emails or placed phone calls directly to Representative Workman, the legislation’s sponsor. The media reported that Workman introduced this legislation as a jobs bill, saying something to the affect of “all a ban on dwarf tossing does is prevent some people with dwarfism from finding jobs.” Though this remark was attributed to Workman, he has since narrowed his messaging around the legislation to government intervention, claiming that, although he finds dwarf tossing horrendous, government has no right telling people what they can and can not do. According to Workman, if a dwarf wants to be thrown, he or she has a right to participate in dwarf tossing events.
The personal liberty argument is not easy to address. When news last year surfaced of a theme park in China that features dwarfs on display for the public’s amusement, many people within the short statured community in the United States defended the Chinese dwarfs who participate, saying they had a right to make a decision to participate. But there is a difference between dwarf tossing and the theme park. The difference is safety. It’s been well documented by the Medical Advisory Board of Little People of America that dwarf tossing could result in serious injury, and even death, for the person participating. That is a serious risk. Perhaps a risk serious enough to legislate against. But one could still make a strong argument that government shouldn’t legislate the safety of an individual. After all, boxers, wrestlers and football players risk paralysis and death when they compete.
There is a difference though between dwarf tossing and the other activities that create serious risks to the participants. With dwarf tossing, when one decides to participate, it poses a threat to the entire dwarf community, including those who want nothing to do with dwarf tossing. If an activity creates an environment that threatens those not involved with the activity, then government does have a right to, and should, legislate for the safety of the community. The problem with dwarf tossing, the reason it is a threat to the entire dwarf community, is that it creates a hostile environment for people with dwarfism, all people with dwarfism. Because dwarf tossing projects the dwarf as a mere object, no different than a shot put, a discus or a football, its sends a message that people with dwarfism are inanimate objects and it is acceptable to physically handle them as such. This Washington Post blog entry includes testimony from a dwarf who was a victim of obnoxious physical behavior as a result of messages sent by dwarf tossing. Other, more positive messages of dwarfism do exist today in popular culture and mainstream media. But because the history is so recent of dwarfs presented in popular culture exclusively as punch lines, comic relief, and objects, the reemergence of dwarf tossing, and the endorsement of dwarf tossing, poses a risk.
The timing of the repeal legislation in Florida is particularly atrocious. So much attention has been dedicated recently to anti-bullying initiatives, in the hopes of impacting communities that embrace differences. Dwarf tossing completely contradicts the anti-bullying movement. Rather than embrace differences, dwarf tossing says that it is okay, for the amusement of others, to objectify people because of their differences. A slap in the face to those who are organizing against bullying, dwarf tossing promotes a culture of hostility.
Anyone against dwarf tossing, please sign this petition. The petition urges Representative Workman to withdraw his repeal legislation.
Sunday, September 25, 2011
On September 18, Peter Dinklage won an Emmy Award for Best Supporting Actor in a Drama Series for his role in the show "Game of Thrones." I was not watching the Emmy broadcast, but I learned of the award just minutes after Dinklage received the honor. First, a colleague of mine from Little People of America called, leaving a message that said something like, "Go Dwarfism Awareness Month." A few moments later, my father called, asking if I had heard.
After the second message, I searched the internet for news about Dinklage. On Facebook, scores of my Facebook friends who are part of the dwarfism community had already posted messages on their walls, congratulating Dinklage for the award and recognizing the award as an important moment for the dwarfism community. People were thrilled because Sunday marked the first time a little person was presented an Emmy, and because Dinklage earned the award because of his portrayal of a complex, multiple dimensioned character.
For decades, there has been tension within the dwarfism community because of the link, whether it exists or not, between roles that call for people of short stature simply because of their physical appearance, and traditional stigmas related to people of short stature. Some people within the dwarfism community point to roles in which people with dwarfism are used as comic relief, as a metaphor, or as a fantasy character, as a source behind some of the social barriers faced by people of short stature.
Whether or not entertainment fuels social discrimination against little people, many people also believe that the portrayal of people of short stature in entertainment has become more diverse. Now, in addition to antiquated roles of little people in positions of comic relief and other specific one dimensional roles, there are a fair number of dwarfs on television and in the movies with three dimensional parts that have a depth of character. As chances that a dwarf will be portrayed in popular culture in a more humanistic way have increased, awareness about the broader dwarfism community has also increased. There is now much more knowledge of language issues within the dwarfism community, as well as the general issues people with dwarfism encounter.
Well before "Game of Thrones," Peter Dinklage played a part in opening up awareness about the lives of dwarfs. His turn as Finbar McBride in The Station Agent contributed heavily to the new diversity of dwarf roles, and is often referred to as a groundbreaking role for people of short stature. It is almost as if The Station Agent, along with other elements in entertainment, helped open the door for dwarfism and social acceptance in the early 21st century. For the past seven or eight years, since the door has been opened, the dwarfism community has been streaming through the door, and trying to ground ourselves within the room of social acceptance. In a way, the Emmy award for Peter Dinklage symbolizes the idea that we've been granted legitimate residency within the room.
What is interesting about Peter Dinklage is that he has helped move the dwarfism community forward with very little contact with others in the dwarfism community. Of course, Little People of America is the not be all and end all in terms of dwarfism in the United States. But it is a very large national membership organization. Dinklage is not a part of it. In his acceptance speech, Dinklage made no reference to his dwarfism or to dwarfism in general. He accepted the award as if he were any other young white guy accepting an Emmy. But perhaps, that is part of the point. Dwarfism advocates argue that for the most part, people with dwarfism live their lives like everybody else. We do a few things differently, but nonetheless we deserve to be treated like everybody else. When Dinklage accepted his Emmy, the entire nation saw a dwarf treated like he was just another actor. Not only that, he was recognized for talents in no way connected to his dwarfism.
On an individual basis, life is not going to change for dwarfs as a result of Dinklage's Emmy. Each of us will still run into situations that, and people who, will figuratively kick us out the back door of social acceptance. But for the community as a whole, Dinklage has helped us earn a permanent spot inside the door of social acceptance. And no matter how many times I am kicked out, and I have to claw my way back through the door, a spot will always be waiting for me inside.
Sunday, September 11, 2011
A month and a half ago, my wife and I moved into a condominium a few blocks south of our former apartment. A benefit that comes with property ownership and our monthly assessments is basic cable. I have not lived in a home with cable for nearly 20 years, when I shared an apartment with three other former Beloit College students in Chicago's Roger's Park neighborhood.
My wife and I are well aware of the risks that come with cable, primarily the risk that we will spend more time than we previously did in front of the television. No matter how many channels a television carries, wasting time is always a risk. But we used to have about 20 channels from which to choose to waste our time, now we probably have 100 or so.
One such channel to which we have fallen victim is the The Learning Channel. We've been sucked in to the drama built up around the final few episodes of Kate Plus 8. For the last few weeks, I watched Kate and her children, along with the bodyguard, a few of Kate's friends and a few other kids (who I think are the children of one of Kate's friends), travel around the country in two rented recreational vehicles. The two episodes I've watched focus on the tension that escalates between nearly everyone on the trip as a result of spending so much time together within close quarters. Through both episodes, the program foreshadows the point when one of Kate's friends says 'enough is enough, I can't take this anymore,' and makes a b-line for the nearest airport. For two episodes, the program follows the drama to the eventual tipping point, when the parties on the RV's can longer stand to be around each other. To some extent, the episodes remind me of the trips my family made from Madison, Wisconsin to Rockport, Massachusetts. From the time I was three years old until I was 18, every other summer, my family packed up our station wagon then spent two days on the road until we reached the Atlantic Coast, where we then vacationed for a week or two. I have found memories of the long, eight hour days my brothers and I spent in the back seat of the station wagon. Even the memory of my younger brother Steve, when his patience with me had reached its limit, throwing one of my socks out the window makes me smile. But I am sure there were times my mother wished she could have said, 'enough is enough' and left the three boys to fend for themselves.
I guess that is the point of reality television, to chronicle the life of a someone on television in such a way that the experience of the person on television resonates with the viewers. But the tension that developed as a result of so many people spending two weeks together in a RV isn't what really resonated with me. What really resonated with me were the numerous times throughout the two episodes that Kate complained about strangers taking uninvited photos of her and her kids. The episodes didn't include footage of the strangers taking pictures, only the aftermath of Kate complaining about the pictures. It happened once in the evening at a public camp ground. While Kate and her entourage of children and friends argued about whether or not to order pizza for dinner, Kate turned to her bodyguard and asked something like, 'and are you going to deal with what happened back there?' Kate was referring to some other campers or possibly some groupies who were following the RV's across the country and had taken some unauthorized photos. Kate wanted the bodyguard to confront the strangers and either retrieve the photos or at the least give the strangers a good scolding. Basically, the bodyguard said, 'no, I am not going to do it.' Perhaps the bodyguard said that because retrieving unauthorized photos was not in his job description. But he also might have answered that way because he believed either there was nothing he could do, or because he believed making a big deal of the photos would not be worth the effort.
On several occasions, if not more, I've written about people taking my photo without my permission, not because I am a celebrity like Kate and his kids, but because people believe dwarfs are funny looking. And I know that other people of short stature have had similar experiences. It is very frustrating experience. Part of the frustration comes with the fact that one's privacy is invaded, and part of the frustration stems from anger around the intent of the photos. But for me in any case, another part of the frustration revolves around trying to figure out the best response. Often the times, the photos churn up such anger in side of me that I want to retaliate in order to share that anger with the perpetrators. Typically though, if I do retaliate, I end up more worked up and more angry than I was originally. Sometimes I feel like I should let it go. If I do, I am able to get through my anger more quickly than if I would have responded. But not retaliating makes me worry that the perpetrator believes it is something he or she can get away with.
Watching the episode of Kate Plus Eight didn't answer any questions for me. I did not learn which way to respond is best. But the episode made me feel a little better. I did not reveal in the fact that somebody else, besides myself and other people of short stature, have to deal with unauthorized images. But the answer confirmed for me the fact that there is no good way to respond. Not doing anything is not going to make one feel better. And retaliating is not going to make one feel better. I wish there were an answer to how to deal with the situation. But until there is, I feel better knowing that people of short stature are not alone.
Saturday, September 3, 2011
The problem with this kind of system is that thousands of people with disabilities are in nursing homes for no reason. The supports people need, like personal assistant help, could just as easily, be provided in a person's own apartment. Nursing homes cost more money than services in the community, and often times they increase the isolation and decrease the quality of life for people forced to move in because other support options can not be found.
Within the first two years of the settlement process, more than 1,000 people with disabilities will transition out of nursing homes and into community-based apartments. That number may not sound large within the context of the settlement class -- 20,000 people -- but to give it some perspective, Access Living runs a program that works one on one with people with disabilities in nursing homes, giving them the resources they need to move out. Because the system in Illinois is set up in such a way that the majority of resources are funneled into institutions, just more than 250 people have transitioned out of nursing homes since 1998, when the program started. Basically, in order to move people out, Access Living has to work against the grain of the system. The goal of Colbert v. Quinn, the class action settlement signed on August 29, is to change the system in Illinois. With this settlement, thousands of people in nursing homes will be offered quality community-based support services in their own homes. Now, when people choose to move out of an institution, they will no longer be forced against the grain of the system.
The morning after the filing, Access Living hosted a news conference for media to announce the settlement. The afternoon before, and the morning of the news conference, I sent an email to Access Living staff, briefing them about the settlement and the media event. About an hour or so before the media event, I was in the Access Living break room. While I poured some coffee, a co-worker of mine named Jim walked into the break room. Jim has many years of experience working on community integration issues (changing long term care systems in order to allow more people with disabilities to get services in their own homes instead of institutions) with ADAPT and with Access Living. Jim mentioned the settlement. He said something like, "this is great. I wonder if everyone understands just how huge this is?"
Hearing this from Jim was great. He had spent many years participating in civil disobedience and direct action protests on behalf of people with disabilities whose civil rights had been violated because they were segregated unnecessarily in nursing homes. Though the Colbert agreement is a great step forward, the agreement is a legal settlement. The disability legal coalition had to negotiate in order to reach an agreement with the defendant, the State of Illinois. There was some concern over how some disability advocates, like Jim, would respond to a few of the settlement details that came out of the negotiations.
Jim's question -- how huge is this?- echoed in my ear later that morning. About half an hour after speaking with Jim, I was in the office of Access Living's President, Marca Bristo. Marca has more than three decades within the disability rights movement. Among many other resume builders, she was a part of negotiations that brought forward the Americans with Disabilities Act. Marca was scheduled to speak at the news conference. We were discussing her talking points and the over all agenda for the media event. My cell phone rang. It was a local television station. When I arrived at the office that morning, the first thing I did was email, then call, local television and radio stations, inviting them to the media event. An assignment editor from one of the stations called me back while I was in Marca's office. He had a few questions about the settlement before the media event. He asked about Medicaid in Illinois. He asked about how the long-term care system worked for people with disabilities in Illinois. He asked about how many people the settlement might impact. After a few questions and answers, the assignment editor paused. There was silence over the phone for a few moments. Then the man said, "this is pretty huge, isn't it?"
"Yes," I answered. "It is."
I've worked at Access Living for a long time. I really enjoy the job, and often times the job is very satisfying and fulfilling. But I am hard pressed to remember a moment as gratifying as last Tuesday morning, when the assignment editor for the local television station said, 'this is huge...', grasping what kind of impact the Colbert settlement will have on the Illinois Disability Community.
Sunday, August 28, 2011
Just over two years ago, when news of an FCC complaint against NBC for its use of the word midget and its negative portrayal of people of short stature gave Little People of America some national exposure around language issues, a Chicago newspaper columnist asked me if LPA would target our advocacy efforts around youth football leagues that use the word midget to identify an age division. I told him LPA would not. Similar to the way Ethan and I approached Freeburg, I told the columnist that LPA's goal is to raise awareness. We couldn't tell outfits like football leagues what to do. But, hopefully someday, the leagues would understand our perspectives and use that information to change the name of the league. Like midget mascots, change within the football leagues would need to come from within.
It appears that for at least one league in the Pacific Northwest, change may soon be here. Last week, news broke that a youth football coach near Seattle spoke out against use of the word to identify youth divisions within football leagues. He doesn't coach within a midget football league, but an upcoming opponent for his team was within the midget division. The coach is an uncle of a young girl with dwarfism. The family relationship with a dwarf gave the coach a perspective unlike anybody else a part of the football league. The coach spoke out publicly, claiming that the league should change its name. There seemed to be a bit of backlash against his comments and in support of the word midget to identify a division, but the coach's comments also generated support. Evidently, enough support to create change. Though I haven't seen anything in the news, I've heard that the league voted to change its name.
The division near Seattle is just one football league. My guess is that there are hundreds around North America that have a midget division. The majority of them probably won't be changing their names anytime soon. But the news of change from the Pacific Northwest is great. It indicates to me that change from within is possible, and that in some places around the country, it will come.
Tuesday, August 23, 2011
Earlier this week, the EEOC announced that the parties involved in the complaint had reached a settlement. The former Barista, Elsa Sallard, will be awarded $75,000 in damages. In addition, Starbucks managers in El Paso will attend Americans with Disabilities Act training programs. With the training programs, Starbucks will equip local managers with tools and information to address future accommodation requests.
The settlement announcement, especially so soon after the complaint was released to the public, is good news. I am happy that Sallard will receive compensation and I am happy that Starbucks is laying groundwork for an environment in El Paso, in front of and behind the counter, inclusive of people with disabilities.
Since the Americans with Disabilities Act, and well before the Americans with Disabilities Act, huge amounts of resources have been funneled to programs designed to support the efforts to employ people with disabilities in the work force. Despite those efforts, the unemployment rate of people with disabilities is still much larger than the general population. For all I know, Sallard is working now at another job. But she could be, through no fault of her own, like many other people with disabilities, out of work despite all the effort put into employment. The resources are necessary. It will take those resources to change attitudes of employers reluctant to hire people with disabilities. Attitudes are the key.
I applaud Starbucks for implementing systemic change. And I believe it will make a difference, in El Paso and hopefully around the country. But in the face of stories about lawsuits and settlements, I would like to hear some stories about the people who are using simple accommodations in order to perform their jobs. These stories might help to change some attitudes. But even though the stories exist we won't hear them because the headline "man works at McDonald's with the help of a stool" is not as sexy as "Dwarf Barista sues coffee empire."
The stories should be told though. For the sake of people with disabilities in search of employment, and more important, for the sake of employers. If the stories are told, perhaps the next time a store manager, whether it be of a coffee shop, a Big Boy or a Gap, while pondering an accommodation request from a dwarf, instead of asking himself or herself, 'wouldn't that be dangerous?' would exclaim, 'a stool! Of course. why didn't I think of that!'
Saturday, August 20, 2011
There are good examples that indicate the general population is indeed uncomfortable with disabilities. A few years ago, a woman named Cerrie Burnell began appearing as a presenter on Cbeebies, a television channel for children produced by the British Broadcasting Service. Burnell is a young woman with a disability. Her right arm did not develop typically. It extends just beyond the elbow. Soon after she began appearing on Cbeebies, the network began receiving complaints, primarily from parents of children who watch the show. According the complaints, a "one-armed" presenter was scaring the young viewers. Clearly, the parents were not comfortable with disability.
Also, the Muscular Dystrophy Association recently announced that Jerry Lewis would no longer be hosting the annual MDA Telethon. This announcement has generated a response from individual disability advocates, some of who are founders of a group called "Jerry's Orphans." Advocates founded Jerry's Orphans in response to a concern that MDA Telethons were just as good as perpetuating disability stigma as they were at raising money. Many in the disability community feel the telethons reinforce images of people with disabilities as objects of pity, who are helpless, and in need of charity. This stigma is no different from physical inaccessibility at creating barriers to inclusion and opportunity. In response to the recent announcement from the MDA, disability advocates have spoken out, saying that this is an opportunity for the telethon to change it's model from one rooted in pity and cures. In a column published in the Columbus Dispatch, disability advocate Deborah Kendrick wrote, "What plans MDA has for the tone of this year’s telethon remains to be seen. My guess is that without Jerry Lewis, they'll still raise money, and they'll probably do it with a bit more dignity." Kendrick is a kindred spirit of Jerry's Orphans, and made it clear in the column. The column generated some vicious, almost violent feedback from readers. In an online email exchange about the column and the feedback, Mike Ervin, a disability community member in Chicago and one of the original Jerry's Orphans, commented. Mike is a veteran of hundreds of protests, including blocking buses and barricading office building. But in the email conversation, Mike said protests against the MDA Telethons were the only time he ever felt scared at demonstrations. According to Mike, discomfort fed the fear. He wrote something to the affect of 'people at the telethons are not comfortable when we step out of the 'pity' model.'
The recent discussions on the idea of the general population becoming comfortable with disability made me start thinking of dwarfism. It made me think of the relationship between the image of people with dwarfism in the media as just regular people and the extent to which the every day person is comfortable with a dwarf as just an every day person in the community going about his or her business. As I have written several, in not many, times within this blog, I think progress is being made, partly because there many more images today in popular culture of people of short stature framed as just regular people. Granted, some people believe the motivation behind the wealth of images is rooted in exploitation, but nevertheless, the dwarfs who are appearing in the media are doing the things that a member of the general population would be doing, i.e. going to school, working, raising kids, etc... The more we are presented as members of the general population, the more "comfortable" non-dwarf members of the population will become.
That all being said, we are definitely not in the proper 'comfort zone' at this point. If a man driving his car through downtown Chicago were comfortable with dwarfs participating in the general population, he would not need to take a picture. I should have known what was up when the car stopped at the light two car lengths behind the crosswalk when there were no cars in front of his. I was to the car's left, waiting at the light on my bike to make a left hand turn. When the light turned, I started peddling across the intersection. The car passed on my right, and it was obvious what the man was doing with his quote unquote smart phone.
A step in the wrong direction, yes. But nothing compared to some recent positive news reports......
Sunday, July 31, 2011
When my wife and I returned from the Little People of America Conference in Southern California, she told me about a story she heard from a friend of ours. Our friend is in her thirties and is married to a person of short stature. One day during the conference, our friend went out to lunch with a couple. The couple is typical stature and they have a daughter who is about seven years old. The daughter joined them at the lunch. At some point during the meal, the daughter, unhappy, said something like, “I don't want to be here (she meant the LPA conference). I don't want to be a little person.” Our friend looked at the young girl with empathy and understanding. “Some days,” she said, “I don't want to be a little person either.”
I don't know if the 2011 Conference was the first time the young girl spent time with other little people, but her story reminded me, not of my first national conference, but one of the first times I spent an afternoon with a group of other little people. I was probably younger than ten years old. I had gone with my parents to a chapter meeting somewhere near Milwaukee Wisconsin. My parents were inside the house of the family hosting the meeting. I was standing on the sidewalk outside with a guy who was probably in his teens. My parents had been looking forward to me meeting this teenager. I think they believed he would be a good role model. “He lifts weights,” my mother said from the front passenger seat of the car as we drove to the meeting. She turned and looked at me for a few seconds, with a big smile on her face.
This teenager and I stood outside the house, hoping the meeting would be over soon so we could be on our way home. I don't know what we had been talking about. Perhaps I had asked him about weight lifting. But all of a sudden this guy told me he was a fast runner. “Okay,” I said. I wasn't about to tell him I was a fast runner also because I always finished last or second to last in gym class races. Though I didn't doubt he was a fast runner, he wanted to show me. He took off his jacket, took a mark on the sidewalk, then sprinted about 30 or 40 feet. When I show him run, I was shocked. Sure, he was fast. Probably a lot faster than me. But it was how he ran that struck me. The way he moved looked a lot different than the way my peers in gym class looked when they ran. I also knew, the moment I saw the teenager run, that I looked the same way when I ran.
I had seen myself in plenty of mirrors. I knew I was shorter than everyone else my age. I knew that my body was shaped different than the body of my peers. But the sight of the teenager running underscored my difference more strongly than ever before in my life. It was as if that moment was the first time I understood how physically different from most other people I actually was. The moment was a bit overwhelming. I was younger than ten years old. It wasn't like I all of a sudden saw my entire life in front of me as a marginalized person. I didn't see anything beyond third or fourth grade, or whatever grade I was in at the time. But it was still a bit overwhelming, to see myself as different from the rest of my school mates.
I imagine the girl who had lunch with my friend also felt overwhelmed. She probably understood that she was physically different from all of her friends at home. She didn't want to be different, and she didn't want to be around thousands of other people who reminded her of how different she was. But I am glad the young girl's parents brought her to the conference. If she isn't already, one day the young girl will be glad her parents brought her. I am glad my parents drove me to the meeting many years ago. Because at some point, my friends and peers within LPA became much more than a reminder of my physical difference. They became a base of support with which I can manuever through the challenges that a world which doesn't always embrace differences poses. And they became a base of support with which to build awareness and make changes so that, little by little, the world opens up to do a better job of accommodating differences. Like my friend said, there are still some difficult times. Maybe there are some days when it doesn't feel good to be a person of short stature. But that's not my fault, and that's not the fault of the thousands of other little people in the country. If it were, most of us probably wouldn't come back to the national conferences year after year.
Friday, July 29, 2011
Last Saturday, about 2,500 people marched in the 8th Annual Disability Pride Parade in Chicago. People came from far reaches of the country, and people from outside of the United States. In one way or another every parade participant made their way to Chicago to celebrate disability history, celebrate disability culture and draw strength from the support generated by thousands of empowered people.
Each year, I look forward to parade because of the opportunity to bring people together for the Open Mic on the eve of the parade, and the chance to march with Little People of America. For several years in a row, my wife and I have organized the Open Mic. For the Open Mic, on the evening before the parade, a group of about 60 to 80 people gather at the First United Methodist Church, which is across the street from the plaza that plays host to the program that follows the parade. Then, about 20 performers are given five minutes to recite, read, sing, dance or just talk up on stage.
This year, I tried to make the event a little better than in years past. I tried to tighten the production. Rather than introduce each performer one by one, I divided the performers into groups, setting it up so that each performer within his or her respective group would follow one after the other without individual introductions. The goal was to streamline the production and to give the transitions between performers a more polished feel.
My plan didn't work. I did not do an adequate job of prepping the performers, and I didn't assign a stage manager whose job it would have been to shepherd the performers to the wings just before their spot in the program. As a result, there were big gaps in time between performers, and I often had to retake the stage to remind a performer it was his or her turn to address the audience.
In addition to tightening the Open Mic performance, my other goal was to increase the number of people who marched with the Little People of America contingent on the day of the parade. Two years ago, either seven or eight people marched. Last year, because of the rain, we had only four or five. This year, I hoped at least ten would march. At the start of the parade, only five people lined up to march with Little People of America.
Though I didn't reach my individual goals at this year's parade, I did learn something that goes beyond any personal successes or let-downs of mine. Each previous year of the parade, I'd reflected on what the event meant to me. Afterwards, I would talk about what pride and empowerment meant to me. This year, perhaps for the first time, I understood what the parade means to the community.
At the tail end of this year's Open Mic, Catherine Odette, the 2011 Grand Marshal and an organizer of the Disability Pride March in 1992, spoke to the audience. In front of the microphone, Odette stressed the importance of the individual disability voice. She underscored the value of getting in front of a microphone, in front of scores of people who will actually listen to you and support you, and saying, singing or reciting whatever one desires. For Odette, the transition times between performers and the introductions of the performers didn't matter. What mattered was that we all had a stage from which to express ourselves. Though I hoped for a Tony worthy performance, the point of the Open Mic is not accolades. It is to give everyone several minutes of stage time.
My eyes opened again, a few times, on parade day. Little People of America started with a group of five, including my friend Joe from LPA, who was marching in the parade for the first time. By the time we finished, nine people were in our group. First, as we marched, one of Joe's friends who had come from Michigan, and a friend of hers from Chicago, joined our group. Then a local woman, who volunteers where I work, joined our group. With the additions, our LPA group was up to eight people. With just a block or so left before we reached Daley Plaza and the end of the Parade, just as we reached the building where my wife Katie and her friends were watching the parade, Tekki of LPA joined the contingent. Earlier in the day, Tekki had left a message on Katie's phone, telling us that she wouldn't be able to make the event. But there she was, with Katie and her friends. When the LPA group approached the spot where Katie and her friends were positioned, Tekki moved into the street to join us, bringing our numbers to nine. Later, I asked Tekki, “I thought you couldn't make it?” She looked me straight in the eye, with a very serious expression. “I wasn't going to,” she said, and paused. “But I just had to come.”
That evening, long after the parade and the parade celebration in Daley Plaza, a group of us hung out in Joe's hotel room. We sat there, drinking beer, eating pizza and sharing stories about everything from work, to disability, to homework assignments back in second grade. Joe's friend, who had come from Michigan and joined LPA's contingent in the parade, was also in the room. I had met her the night before after the Open Mic. From her stories on the night of the Open Mic, at the parade, and in the hotel room, it became clear that this weekend was much more than a five block walk up Dearborn Street in downtown Chicago. From her stories, it became clear that just days before the parade, she wasn't sure how she would get to Chicago. And once she was in Chicago, she wasn't really sure where she would stay. But one thing was clear, she was coming to Chicago and she was going to march with thousands of other people with disabilities. She wanted to feed off the empowerment, and, like Tekki, she 'just had to come.'
Listening to what Tekki had to say, and to what Joe’s friend from Michigan had to say, I realized how important parade weekend is to hundreds of people. It doesn’t matter how polished the transitions are between speakers at the Open Mic, and it doesn’t matter how many people march with LPA in the parade. What matters is that everyone who has something to say is given the chance to say it, and that everyone who wants to be at the parade can be a part of it.
Thursday, July 14, 2011
I've been back from California for more than a week. Next to graduating from college, clawing my way through student teaching, and getting married, moving into the role of president is probably one of the most significant things I've done to this point in my life. With that in mind, I expected to return from the conference with all kinds of significant thoughts and ideas to share.
But I have few if any profound thoughts. I just keep thinking of one specific anecdote from the trip to California. On Tuesday, July 5, more than half way through the conference, I went to the conference registration room. The room was on the first floor of the hotel near a large grand ballroom. There were usually three or four conference committee people stationed there. They spent their time updating registrations, making last minute logistical changes to events, and answering a lot of questions. When I went to the room, I usually asked a lot of questions or borrowed a printer. On Tuesday morning, I went to the registration room around 10 a.m. I needed to pick up a few badges for members of the media expected to arrive at the hotel later in the day. I found the doors closed. Evidently the computers had crashed. The staff running registration wanted to keep the doors closed until the system was running again. A volunteer was stationed outside the doors. His job was to make sure no one came in the room. "May I help you?" he said, when I approached the room. I told him what I wanted. He wouldn't let me in the room.
Everyone who attends the conference is required to wear a name badge. I had mine on. I was also given a ribbon that indicated I was the president. I was supposed to attach the ribbon to my name badge. But I wasn't wearing my ribbon. I never took the ribbon out of my registration packet. I justified that move with the excuse that officially I wasn't going to accept the gavel from Lois until Wednesday. In reality, I was a little nervous to put on the presidential ribbon. Until I became more comfortable in my role, I didn't want to draw more attention to me than was necessary. I was afraid the ribbon might draw unnecessary attention.
As I stood in front of registration, I wondered if the volunteer knew who I was. I had no recollection of meeting him ever before. I wondered if he knew I was the new president. For a moment, I considered telling him who I was. But I didn't. Instead I asked him to relay some information to the people inside of the registration room. He agreed to deliver the message and I told him I'd be back in a few hours to pick up the badges.
Everything worked out fine. I returned around noon to find the registration room open and the computer system back on line. I picked up the badges and went about my business.
Later in the day, I heard a story about someone else who had wanted in the room while the computer system was down. I never verified the story. Maybe it didn't really happen. But according to what I heard, this person demanded that the doors be opened, even though the system was down and the people running the room wouldn't be of much help without a functioning computer system.
Whether the story is true or not, it made me feel good about my encounter with the volunteer earlier in the day. I am glad I didn't tell him I was president. For all I know, he wouldn't have cared. For all I know, even if I had told him who I was, he still would not have been allowed in the room. My presidential standing wasn't going to fix the computers. But I think that is the point. Whether one is the President of the United States, the President of a book club, or the president of a non-profit organization, the privileges or the powers that come along with that title are not about the individual who holds the position. I shouldn't be treated differently just because I am an officer of the organization. Any powers and privileges associated with the position of president of LPA should be used for the benefit of the membership and the dwarfism community, not as a wedge to get through a closed door.
Over the next three years, whether I wear a ribbon on my name badge or not, I hope I do bring a lot of attention to myself as President of Little People of America. Not because of a title and not because of who I am. But rather because of what I've done, and what the LPA community has done on behalf of the dwarfism community.
Sunday, June 26, 2011
The Independent Living Model didn't change the barriers faced by people. Whether it's Medical Model or Independent Living Model, the barriers are the same. But the new model changed the way people viewed the barriers. With the Independent Living Model, instead of disability being viewed as something to be fixed, disability is viewed as a natural part of life that can't necessarily be changed and that will impact everyone at some point. With Independent Living, rather than change the individual in order to achieve independence, one must change the physical barrier.
When I first learned about the Independent Living Model, my eyes opened in a dramatic way. The new model gave me a new perspective through which to look at everything that had happened to me as a person with dwarfism, and everything that lay in front of me as a person with dwarfism. I remember trying to bring as little attention as possible to my physical difference in an effort to fit in. Sometimes, if I needed something, some sort of accommodation, I wouldn't ask for it, thinking that an accommodation request would just highlight my differences, and thinking that it was up to me, without an accommodation, to figure things out. Of course, I did have some accommodations. Pedal extenders helped me drive. My parents equipped our house with stools. But whenever possible, I avoided accommodations. The new model taught me that it's perfectly acceptable to ask for accommodations.
More important though than any physical challenge and accommodation, the Independent Living model helped me view social barriers through a more productive filter. All people with dwarfism face social stigma, in so far as we have to deal with situations and with people that are not accepting of physical difference. Today society seems to be embrace differences better than it has in the past, but people with dwarfism continue to face difficult social situations.
In the past, I interpreted the situations as a fact of life. Intolerance comes with the territory I thought. It was up to me to deal with it and fit in as much as possible. The Independent Living Model helped me process those situations differently. Today, I interpret the situations not as my problem, but as a problem that stems from lack of awareness, ignorance and fear of difference. I still have to work hard to make the situation better, but it isn't up to me to change, and to fit in. What I need to do is change attitudes, raise awareness, and empower others to embrace difference.
I still have to face the situations today, and I often get upset when I find myself in a situation where someone else is intolerant of my difference. But in the long run, the situations are much easier to deal with when I identify the problem not as my failure to fit in, but as the other party's failure to embrace diversity.
These days, I am reminded of that original introduction to independent living by all of the initiatives around bullying. Similar to independent living models, which takes the issue outside of the individual and puts the responsibility for change on the community, anti-bullying initiatives put the responsibility for change on the broader community.
Many anti-bullying initiatives developed around the country deal specifically with schools and students, but I think the issue goes outside of schools for all of the marginalized communities the measures are designed to protect. I am excited, because at this year's Little People of America Conference, there is a fair amount of programming geared toward bullying issues. I hope the dwarfism community can use this opportunity to raise more awareness around dwarfism, and perhaps put some tangible tools in place that people of short stature can use to protect themselves from bullying.
As far as I know, there are no specific measures in the United States geared toward little people, though I am sure some existing measures can be applied to dwarfism. But here is a story from England that directly relates to the experience of people with dwarfism. The story is about two people with dwarfism who were harassed in a bar and outside of the bar because of their dwarfism. As a result of the experience, authorities in the town where the incident happened are adopting measures to make night life safer for people with disabilities.
I am sad this happened to the two little people in England. But I am thrilled at the response. In this case, the community is making an effort to change, and to confront bigotry and intolerance. Historically, too many times, bigoted behavior at bars and in other social arenas has resulted, not in a community trying to become better equipped to deal with diversity, but in people with dwarfism shuttering themselves away from an intolerant community. Let's hope other communities follow England's lead.
Sunday, June 19, 2011
I thought a little bit more about those fears recently. Last week, a good friend of mine named John died. He was a few years younger than me. The death was unexpected and very sad. At the funeral service a few days ago, John's brother delivered a eulogy. John was a person of short stature. His brother is typical height. During the eulogy, speaking about John and how they bonded, John's brother said, when they hung out, they never talked about women.
I didn't dwell on the statement. I am in no position to presume what John's brother meant by the statement. Also, the comment made sense to my personal experience. When I was in high school, a close friend of mine said to me, "I wrote in my journal that I would never talk to you about dating." I don't remember how the topic came up, but I remember that the statement didn't need any explanation. I knew what he meant. But later on the day of the funeral my wife brought up what John's brother had said in the eulogy. "It's too bad his brother felt like they couldn't talk about relationships together," she said. That's when I started to think more deeply about what my friend had told me years ago, and what we heard earlier in the day at the funeral service.
Like most other heterosexual young boys in high school, I grew deeply attached to quite a number of women during my high school years. None of them reciprocated. Who knows why. Probably because my attraction pulled me toward all of the wrong people, or because my charms, looks and (most likely) complete lack of coordination regarding the opposite sex were not enough to encourage reciprocation. In all honesty though, I probably attributed some of my failure to my dwarfism. After all, if one scans dating sites, the women seeking men sections on typical dating sites include many classifieds with the criteria, "tall."
When I was younger, I talked about my attractions a lot, pretty much to anyone who would listen. But as I grew older -middle school and high school age -I stopped talking about them. My peers had started to successfully date others while I had not. I was embarrassed to talk about dating because I thought I was the only person who was failing to find romantic relationships. I didn't want to talk about something that I believe reflected a failure in me. Also, I didn't want to talk about something that would underscore differences that already existed between myself and others because of my dwarfism. When my friend made the comment about his journal, I felt like he understood what I believed to be my failures and differences. He was protecting me from talking about something that would embarrass me.
The other day, at the funeral, I just assumed John and his brother didn't talk about relationships for similar reasons. Again, I can't speak for John and his brother, but after my wife made her comment, I began to realize how wrong I was to avoid talking about my feelings, with my friend who wrote in his journal, and with anyone else that would listen.
I would have been better off if I had spoken openly about my attractions. For one thing, speaking with another person would have helped me to work through my emotions and might have better equipped me to deal with future relationships. Also, if differences did exist between myself and others because of my dwarfism, not talking about sexual attractions, something that everyone experiences, would only strengthen the differences. Finally, by not talking with anyone about relationships, I probably only perpetuated the stereotype of people with disabilities as being non-sexual.
There is a stigma around disability and sexuality. If someone acquires a disability, even if that person led a very sexual life pre-disability, people stop talking to the newly disabled person about sex, stop teaching him or her about sex, and start believing that he or she is no longer a sexual person. Many people who are born with disabilities receive similar treatment. Whether it was my fault or society's influence on me as a person with a disability, my behavior regarding my inability to talk about what was happening probably reinforced the stigma that to this day exists around sexuality and disability.
Ironically, I fondly remember commiserating with John about our romantic trials and tribulations. Compared to mine, his efforts to win the affection of women always seemed well thought out and skillfully executed. Though our stories about women often ended in temporary heartbreak, it felt good to share the story with someone.
Quite opposite to how I felt when I was older and shared my stories with John, when I was young and hid my stories, I grew scared, frustrated, and more prone to hide in my shell. When I grew older, I found peers, like John, with whom I could share my stories. Even if the stories had unhappy endings, my confidence grew. My confidence grew because the more I shared with others, the more I realized that my personal experiences, rather than underscoring my differences, made me more human. As a young person, to some degree, I attributed my lack of success to my physical difference. I was the only one with dwarfism in school and I thought I was the only one failing romantically. Therefore, I thought the difference had something to do with it. If I had spoken out more, I probably would have met people just like me, who had experienced romantic set backs.
It wasn't until I started hanging out with more people of short stature that I realized dwarfism didn't have as much to do with my romantic success or failure as I thought it might. Naively, when I started attending Little People of America events in high school and college, I thought I'd find a lot of people with similar romantic experiences in high school. I am sure I met a few. But I also met many people of short stature whose stories of attraction (throughout their young and adult lives both inside and outside of LPA) included a fair amount of success in addition to the heartbreak. I developed a new set of peers who were living with disability and dwarfism and who had this full range of romantic experiences. It helped me understand that my success or failure wasn't so strongly determined by my disability and dwarfism, or anything for that matter. It was about growing comfortable with who we are and being proud of who we are.
At first, my dating attempts within LPA fared little better than those outside of LPA. But in a way, that was a good thing. It taught me that whether I was amongst my high school peers, my college peers, my adult friends, or my LPA friends, I was the same person. It was up to me to get to know who I was and become comfortable with who I was in order to find some emotional and romantic fulfillment. I believe one important step toward finding out who we are as people and individuals is sharing our feelings, and talking to those around us about how we are feeling. Of course, that's easier said than done. But I wonder how different high school may have been if my friend, rather than writing about me in his journal, would have talked to me, and if I, rather than hiding in my shell, would have talked to him.
The best thing for me about turning 30 was the epiphany that life goes on. One doesn't have to accomplish everything by a certain age. There is always more time. That's not a justification for procrastination. It just means that as long as you keep moving in the right direction, what you want will be there waiting for you. Ten years later, I feel the same way. The sad thing is, life doesn't go on for all of those around me. I am going to miss my friend John. I'd love it he were here today and we could share some stories together.