The Challenges of Awareness Months

Barbara Brotman published a column in the Chicago Tribune on October 6 titled, "Why some women with breast cancer dread October."  From professional football players wearing pink cleats, to billboards with pink ribbons, October is dominated by marketing around Breast Cancer Awareness Month.  With the marketing come stories about women who have battled through and survived cancer, and individuals pitching for more support of research in order to find a cure for breast cancer. In her column, Brotman wrote about women with metastatic breast cancer -- "cancer that has spread and is incurable."  For many of these individuals, the message Breast Cancer Awareness Month, a message of triumph and overcoming, doesn't resonate.  Brotman quoted a woman with metastatic cancer in her piece.  The woman said, "I'm happy, of course, for people who are doing well and have finished treatment, but I don't feel like I'm a part of that."

Though breast cancer awareness is by far the most well-known cause, other campaigns use October as a month to raise awareness.  Also, similar to women with incurable cancer, other pockets of people wince during October when the communities they are a part of trumpet awareness.  This includes Dwarfism Awareness Month. Dwarfism Awareness Month is much different than Breast Cancer Awareness Month.  When the ubiquitous pink throughout October represent the search for a cure, the green bracelets of Dwarfism Awareness Month have nothing to do with a cure.  Dwarfism Awareness is all about sending a message that people with dwarfism have lives just like every body else.  As such, people of short stature should not be treated as curiousities or the subject of study, but should be given the space and opportunity to live life like everybody else.

Little People of America launched Dwarfism Awareness Month in 2009. I served as Vice President of Public Relations for LPA at the time.  Soon after LPA kicked off Dwarfism Awareness Month for the first time, I received an email from a woman who wrote that Billy Barty, the founder of LPA, would turn over in his grave at the thought of Dwarfism Awareness Month.  Last year, I saw a Facebook post from a woman with dwarfism, who intimated that with October approaching, it was time to crawl under a rock and hide for a month.  I don't know what either of the people were thinking, but I assume they thought that people with dwarfism already receive a lot of attention, often unasked for attention, why dedicate an entire month to drawing more attention to ourselves?

This year, before the calendar hit October 10, I read more posts on Facebook from people frustrated with Dwarfism Awareness Month.  They seemed to agree in theory with the intent behind the campaign, but felt that too many people used the campaign to send the wrong message. They were concerned that messages were shared that framed people with dwarfism as cute and heroic, and that embellished the cliche, "they may be small, but they have hearts as big as anyone in the room." Though well intended these messages reinforce the gap between people with dwarfism and the rest of the community, and fail to convey that most people with dwarfism just want to live regular lives.  After all, no one with a jumbo size heart, literal or figurative, can lead a regular life.

I agree that some messages sent during Dwarfism Awareness Month might send the wrong message. But LPA, and the dwarfism community, must continue promoting the campaign.   We must continue to show the broader community that people with dwarfism are proud of who we are as people with disabilities, and people of short stature, and to raise awareness about the barriers to opportunity and equality we face so that people in the broader community can be a part of the effort to confront those barriers.

Dwarfism Awareness Month V

Back in 2009, Little People of America launched Dwarfism Awareness Month to raise awareness about people of short stature and to confront stereotypes and stigma regarding dwarfism.  In the first few years, LPA as an organization and individuals within the community focused on legislative efforts, lobbying state politicians to issue proclamations in recognition of Dwarfism Awareness Month.



In 2012, LPA invested in a 15-second Public Service Announcement that ran in Times Square throughout the month of September.  Late in September of 2012, with a spotlight on the Public Service Announcement, LPA hosted a Dwarfism Awareness Month launch event in Times Squares.  Dozens of people attended a news conference and reception, and several different dwarfism organizations co-sponsored the event.

Over the past few years, Dwarfism Awareness Month has taken on a life of its own.  Media stories in Australia and England about people of short stature identify October as Dwarfism Awareness Month. This year, Mexico launched a campaign to celebrate October 25, the birthday of LPA Founder Billy Barty, as International Dwarfism Awareness Day.  Groups around the world, including Iran, joined the effort.  This year LPA didn't host a signature event or focus on a particular advocacy effort.  Dwarfism awareness means different things for different people.  With that in mind, the organization
encouraged and supported the efforts of individual members. I tried to do my part by running in the Madison Mud Run, a 5K race in a small town just south of Madison.  My wife ran with me.  She has always wanted to compete in a mud run. The course went over a variety of obstacles, including two streams, a big wooden wall, a water slide, and a wide mud pit filled with icy water.  Using the 5K as a vehicle, I raised more than $500 for Little People of America and also helped raise some awareness about the dwarfism community. 

Crossing a stream at the Madison Mud Run

Though the Mud Run was the focus of my Dwarfism Awareness Month efforts, one other moment in the past week stood out in my mind as signature dwarfism awareness moment.  For a person of short stature, everyday is full of moments that reflect dwarfism awareness.  Sometimes we use the moments constructively. Sometimes we let them go.  Sometimes our efforts to construct backfire in our faces.



 The moment happened Friday, October 25.  I stopped by a rental agency in my neighborhood to pick up a car for the weekend.  My wife and I were going to drive up to Madison for the District Six Regional of Little People of America.  I always stress out just before I pick up a rental car.  I love to drive, but I don't own a car so every time Katie and I leave town I need to rent a vehicle.  The problem is that my pedal extenders don't fit all cars.  The newer, more modern cars have gas pedals with a convex rear surface.  My extenders slip right off of the pedal.  I used to go out of my way, taking a train 20 minutes north of where I live, to a rental agency that would reserve a certain car for me, a car that I knew worked.  But my contact at that agency moved on so I started renting from the local neighborhood agency.  I've probably rented there 10 times over the past three years.  Though sometimes I've had to try more than one car, and once it took me more than an hour to install the extenders, each time I've been able to drive away with a car. Nevertheless, each time I stress out. 

Last Friday, I arrived at the Budget Rent a Car around 3:30 p.m. The office was empty.  No one else was waiting in line to pick up or return a car.  The man behind the desk had seen me before.  I had rented from him at least two other times.  When he saw me enter the office, he didn't ask me to check in.  "Follow me," he said, and he led me back to the garage.  In the garage, he indicated a row a cars and told me to find one that works.  Each car was unlocked.  While the rental agent went back to the office I examined three different cars, checking the gas pedal for one that would work with my extenders.

For me, that's what dwarfism awareness is all about.  People of short stature are really not much different from anyone else.  We want what other people want.  Sometimes though, in order to access what we want, we need supports of one kind or another.  For me, when I enter a rental agency just like everyone else, I want to leave with a car.  But in order for that to work, I need accommodations.  I need extenders and I need a car that works with the extenders.  The Budget Rent a Car in the South Loop of Chicago understood that.  And on October 25, as I drove away with a Toyota Corolla, that made me happy. 

10-25 -- International Dwarfism Day

The last post on this blog focused on Little People of Uganda, a support group for people with dwarfism in the East African Country where it appears clear that dwarfs face incredibly difficult changes, including death, sterilization, and imprisonment simply because of dwarfism.  Many other countries joined Uganda as International Attendees at the 2013 Little People of America Conference.  One country was Little People of Mexico.  Like Little People Uganda, the group from Mexico also presented at the LPA Board of Directors Meeting and at the General Assembly during the National Conference in Washington, D.C.  The presentations could not have been more different.  Annet of Little People Uganda delivered a matter of fact, business-like presentation, deliberately walking the audience through a series of slides about the atrocities that face people with dwarfism in Uganda, and the need for a support group to protect people with dwarfism. Containing her own emotion, Annet let the facts speak for themselves. On the other hand, Little People of Mexico led a presentation that had elements similar to a pep rally. The group leader, Jose, spoke about the organization of little people of Mexico then presented about a campaign to recognize October 25 as International Dwarfism Day.  At the end of his talk at the General Assembly, Jose urged on the crowd in the chant "10-25! 10-25! 10-25!."  The audience at the General Assembly chimed in, cheering as if at a sporting event. 

Little People of America and Little People Mexico

Though the Mexico and Uganda presentations were different, the goals of each group, and of Little People of America, are similar.  Each group, and all Little People groups around the world, need to invest efforts into raising awareness about dwarfism.  Doing so, all of us will work to increase opportunities in the mainstream for people with dwarfism and we will help reduce stigma against people with dwarfism. Little People Mexico's Campaign to identify an International Dwarfism awareness day is a great idea.  Not only will the campaign help raise awareness, it creates a vehicle for groups around the world to rally behind a similar goal and work together.  The group from Mexico picked 10-25 to honor Billy Barty. Barty, the founder of Little People of America, was born on October 25th. 

As president of Little People of America, I look forward to partnering with Little People Mexico on the International Dwarfism Awareness Day Campaign.  The campaign will help LPA build on our Dwarfism Awareness Month efforts, and it will help members here and abroad rally behind a common cause.