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User Friendly Vegas: Why Make a Documentary?

July 9, 2012

Today we have an amazing guest post from Carl Wilkerson and Dr. Pattie Thomas, the husband and wife team behind some of the most ground-breaking work exposing the harm of stigma, discrimination and bigotry. Last week, I shared my admiration of their exhaustive work on weight-based stigma and now they are about to embark on an entirely new project that will advocate on behalf of those with mobility issues. So it is with great pride that Fierce, Freethinking Fatties supports the launch of Carl and Pattie’s $5,000 GoFundMe campaign. In their own words, Carl and Pattie explain their activism in the past, and how it has led them to this latest project.

As many of the readers of Fierce, Freethinking Fatties know, we’ve been working on stigma issues for years now. Our work really began in 2001 with the advent of an early internet radio show on Live 365 called Coffee Shop, which were mostly unformatted conversations we’d have over coffee. Because we cared about society, organizational dynamics and stigma, our freestyle conversations frequently turned to these topics.

In 2002, we created a more formalized, FM community radio show called First Person, Plural. By this point, Pattie had her PhD in Sociology, so we decided a show about sociology would be unique (and as far as we can tell, it still is unique, or at least rare). Again, even though the format called for a large number of topics (we decided anything involving two or more people was fair game), we often turned our attention to the question of stigmatization. Since Pattie had been fat most of her life, fat stigma was a natural example to explore.

In 2004, we left Canada (where we lived since 2000) and embarked on a project that looked at universal design in travel, with an eye on challenges of size and disability. The Ample Traveler produced a lot of good experiences for us and some buzz in the fat community. And we also wrote a book during this time, Taking Up Space, and that book is what pushed us into the public eye of the fat community. Using Pattie’s life as a blueprint, we created what we’ve called a sociological memoir, where we explored concepts of stigma, self and society.

In the midst of all this, we started doing video production. In Canada, we joined a film collective and made several short films there, and we took a lot of footage while on the road during The Ample Traveler. Subsequently, we’ve made a lot of vodcasts, the most successful of which has been PDA Nation. None of these things, until now, have been funded. They’ve all been “side projects” produced with our own money and time, a model that has proven unsustainable.

We look back on our work and realize that we were often ahead of the curve on our productions, doing internet radio before it was called “podcasting” and doing The Ample Traveler before there was crowd-funding. If we tried these things today, we probably would be able to fund them better.

But these projects have not been a waste of time. We’ve learned a lot from the past, and our experiences have brought us to this moment in time — a moment we think is most critical.

In 1997, Pattie became ill, briefly dropping out of school. Despite, suffering from chronic pain and fatigue, among other symptoms, she finished graduate school with Carl’s help as a daily caregiver. In 2004, she injured her left foot in what seemed to be a simple sprain. We now know that she was misdiagnosed in 1997 with lupus and was most likely suffering from hypothyroidism. The injury didn’t heal thanks to 10 years of improper treatment stemming from that misdiagnosis. She now has permanent nerve damage in that foot, resulting in mobility challenges, which requires her to use a scooter to get around. Proper treatment has helped, but the decade of improper treatment have done lasting damage.

Then in 2008, Carl became mysteriously ill. For over a year, we went to doctors trying to get answers. All medical tests were negative, but his symptoms got worse. Finally, we wrote out all the symptoms and tests that had been done and took this to a new doctor. Upon seeing all of this information in one place, the doctor ran a simple touch test and diagnosed Carl with fibromyalgia. It took another year, and changing doctors again, to get proper treatment. Even though the fastest growing group of sufferers of fibromyalgia are men, and men are usually hit hard with more severe symptoms that women, doctors still believe it is a “woman’s” condition. We have seen this in our struggle to get him diagnosed and treated. As with all fibromyalgia sufferers, Carl has good days and bad days. It has only been a year or so since Carl has been properly treated and able to function most days.

For the past four years, we’ve had to adjust to being joint caregivers, and these things take their toll. We write about these issues on a Psychology Today joint blog called CWD (Couples with Disabilities). Pattie also writes a blog about fat stigma there called I Take Up Space.

But these challenges also provide context to our understanding of the world. We have grown and developed in spite of, and because of, these challenges.

We now live in Las Vegas and have been here since 2007. Las Vegas is an interesting place to live. It is unique in many ways. The major business district of the metro area is a place called “The Strip,” a three-mile district along Las Vegas Boulevard that is filled with oversized casino hotels.

These buildings are mega-scaled with more rooms per capita than anywhere else in the world. And the world comes here to stay and play. Most of the Strip has either been built or refurbished since 1990, and a number of off-Strip developments have also been built.

Old buildings are rare here. The local preference is to implode, then build something bigger and better over the rubble. In the five years we’ve been here, at least four hotels have been demolished or imploded*, while at least a dozen new mega-buildings have been built**, including off-Strip properties.

Why is the date 1990 an important one for comparison? On July 22, 1990, the Americans with Disabilities Act (ADA) was signed into law. This stands as the most comprehensive law passed to provide accessibility standards for persons with disabilities. Included in that law are design guidelines meant to make buildings more accessible for persons with mobility challenges, including those who use assistive devices and have ambulatory difficulties (difficulties walking). The hue and cry of most cities in attempting to comply with the ADA is that retrofitting (redesigning buildings to be in compliance) is expensive.

It is.

It is astronomically more expensive than simply designing accessible buildings from the ground up.

Las Vegas does not have this excuse. The majority of commercial real estate in the major business sections of the metro area have been built since the passage of the law, under the guidelines of the law. If the world were a logical place, then Las Vegas would be the most accessible place in the world and few barriers would exist.

Our experience of the past five years (and that of others with whom we’ve talked), indicates this is simply not the case. In fact, some of the newer buildings are less accessible than the older ones. At this point in our conversations with TABs (temporarily-able-bodied people – remember most people will experience some sort of mobility challenge in their lives, though most will not be long-term) we inevitably hear, “But I see ramps! I see parking spaces! I see signs!” Yes, these things exist, but they are not well-designed and they create unintended barriers.

Let us give you some examples.

The Greek Isles Hotel Casino has a zero-step entrance into the front of the building that leads to a platform with no obvious ramp to either the casino floor or the hotel lobby, both of which are sunken from the ground level. Understand that such a ramp or elevator may exist, but it is not obvious and no sign was there at our visit to direct us. We did, however, see a ramp coming from another door at the other end of the casino floor; however, when we tried to get to the door by the ramp, we could not get over the curb leading to that door and the sidewalk that led to the door was blocked by one of the decorative columns, leaving only about six inches of sidewalk around it. So we gave up and left.

Caesars has a convention area where the American Sociological Association hosted its 2011 convention. It is upstairs from the casino floor before you get to the mall and the Forum Shops. It has an escalator, but no obvious elevator from that direction. Pattie asked three employees where the elevator was, including a security guard, before one of them (not the security guard) showed her how to access the elevator. It was in the mall on the other side of the convention center. It basically required her to wheel around several hallways up to a floor and then wheel back several hallways.

Another unintended, and dangerous, consequence of poor design is that parents with children in strollers were using the escalator because they too could not find the elevators. That practice will eventually lead to a kid, or someone near the kid, getting hurt. We’ve also been told that another area in Caesars has a half-floor elevator for wheelchair/stroller access that requires you to call a security guard in order to use it.

Built in the late ‘90s, Madame Toussaud’s Wax Museum at the Venetian is now finally accessible, but for several years it had a sign on the window that read “Not ADA Compliant” to let persons on wheels know they were not able to enter. You can get there now, but it requires you to go to the hotel and through underground hallways to find your way back to the museum.

The doors to the handicapped bathrooms at the Wynn, which is otherwise a very nice place to wheel around, are so heavy that one knocked Pattie off her scooter once. The accessible walkways between hotels along the Strip (overpasses that help reduce pedestrian traffic in the street) have no automatic doors and are too difficult to open from a chair, so you have to wait for a kind stranger or a TAB companion to open the door for you to go from hotel to hotel. Fremont Street, which is supposed to be a pedestrian mall meant to draw people to the older downtown area, has no benches, so people on walkers or using canes cannot stop and rest. They can go into casinos, but most of the casino seating is high top, which is hard for people who have knee or hip problems to climb up on. And the list goes on and on.

The letter of the law is often satisfied, but the spirit of the law – accessibility with dignity and without barriers – is sorely lacking.

The question (and it is a sociological question) is: Why?

The answers may not be as simple as they seem. Many factors potentially contribute, including design paradigms, local culture and social empathy. These factors are of interest not just to understand the ADA and accessibility, but also to understanding what needs to happen to eliminate stigmatization of all sorts. We contend that changing law is important, maybe necessary, but never sufficient.

This is the basis of our documentary, User Friendly Vegas. Through humor, personal experiences, expert interviews and just plain “moving pictures,” we want to explore these factors and turn our hometown into a case study for understanding stigma, social empathy and change.

In the past, our projects have been feasible on a small scale. We might have even done this documentary on our own, but it wouldn’t have gotten the attention it deserves. So we are turning to the crowd (newfangled word for an audience) for help in funding this effort.

We need money to get started. Then we need money to produce the final version. The money to produce the film can run between $100,000 and $1 million or more if it is to be done in a format that will draw attention. Understand that we are committed to doing this in one form or another, but we’d like to plan for the most successful project possible, and that means attracting major financial backing.

But to attract that backing, we need to establish what has been a small side business into an entity that cannot be ignored. We need to take our production company to the next level, and we need to have the time to develop a storyboard and treatise that we can present. This means permits, licenses, time not working on other people’s projects, equipment upgrades and grant application expenses (some places even charge you to be considered for funding). We can get started for $5,000, but an investment of $10,000 would ensure the highest quality necessary for this project.

What this means is that in order to succeed we need money, time and a demonstrated interest in this project. We need major support from friends, family, colleagues, activists, advocates, strangers and anyone who believes in this project and what it means. We need the help of others.

So we are turning to the crowd. Today we are kicking off a GoFundMe campaign. Because we also want to show potential investors that interest in this film already exists, we have set a goal of 1,000 contributors. GoFundMe will not allow donations of less that $5, so in order to meet our goal of at least 1,000 contributors, we have also set up a PayPal account for donations of less than $5. With the help of some wonderful supporters, we are offering some nice thank-you gifts for larger donations (and we hope more will be announced as the campaign continues).

We want to thank you in advance for giving us a chance to do this. Together, we can move forward on a great adventure and, in the process, change the world.

===================

*New Frontier, Stardust, Klondike, Nevada Palace

**M Resort, Eastside Cannery, Aliante, Encore, Trump, Palazzo, New Tower at Caesars, MGM Towers, City Center, Cosmopolitan, Vdara, Aria

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3 Comments leave one →
  1. vesta44 permalink
    July 9, 2012 2:54 pm

    Having just come back from a vacation to Rapid City SD, and seeing the Crazy Horse Monument, Mt Rushmore, the Reptile Gardens, Bear Country USA, Wall Drug, the SD Air and Space Museum, Pioneer Auto Museum, and the Ingalls Homestead in De Smet, I can tell you that finding handicapped accessibility and fat-friendly accommodations can be, shall we say, interesting.
    I think that anyone who is designing accessibility for the handicapped should have to actually use a walker/wheelchair/mobility chair for a couple of weeks and see just how easy it isn’t to get around with those devices in the areas they’ve designed.

    • July 9, 2012 3:42 pm

      Yes! And part of what we hope to accomplish with the documentary (and why we are choosing a visual format instead of a book) is exactly what it is like to get around in these areas on wheels, with a walker or a cane.

      Standord’s Institute of Design has a model that begins with empathy. Designers who want to make their designs user-friendly have to be able to empathize with the user, see the world through their eyes. This film will raise such empathy.

  2. James permalink
    July 10, 2012 8:33 am

    The ADA is a thorn in the side for anyone who has to plan new construction or retrofitting.

    I would point out that the ADA, as written, is essentially an unworkable law. -Any- disability must be accommodated, even unforeseen ones to avoid lawsuits.

    I moved to this little village of less than 130 people last year. I have epilepsy. ADA slugfests were common at village board meetings, as they worked to write contracts to renovate the old elementary school for a new village office. The village has been doing curb cut-outs so wheelchairs can go across our dirt streets (!), though no one here uses a wheelchair, and if they did couldn’t get them through the dirt anyway.

    (A real lawyer would make the village pave its streets.)

    At the same time, the village is trying to move the Public Library into the same building because the current one is not ADA compliant (and has other troubles). As President of our village’s Library Friends Organization, I have already worked with the Library Director to make adjustments to the library building to make it more epilepsy-friendly, without spending much (less than $50) to do so.

    They spent literally hours arguing over how much it would cost to make the building’s doors wider (to accommodate wheelchairs that no one in the village uses), fire alarms for the non-existent deaf persons here, &c.

    At the end of all this over several months, I finally got to speak at the board meeting. “You do know I have epilepsy, right? The only person in the county with it?”

    The village had not considered the bookshelves with sharp edges, the unprotected bathroom vanities, office plans that were dangerously cluttered in the event of a seizure, all sorts of hazards for one with epilepsy. As a resident and with my association with the Public Library, I will regularly need to use the village offices.

    Penn & Teller on their show Bulls*** did an article about the ADA. Again, the ADA covers -all- disability. They put one of their producers in an iron lung (there are about five thousand Americans that have to use them), and tried to get into stores on Hollywood Blvd. with it. Only one store could accommodate them. In theory a real person in an iron lung could sue them for no access.

    The fact is, unless those who are disabled speak up, any retrofitting (or new construction) will probably not accommodate their needs if the person has a less-than-common disability (like the two million Americans with epilepsy).

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