Words that Bind

Over Thanksgiving break, I finished the book Men We Reaped, a memoir by Jesmym Ward.  Over a span of several years, from 2000 to 2004, five men Ward knew, including her brother, died.  The chapters of the book follow the deaths of all five men, in reverse chronological order, and retrace the steps of Ward's life growing up in southern Mississippi.  The two timelines converge on the death of Ward's brother in 2000.  Her brother Joshua's death was the first of the five.  The memoir is about five individuals, and the grief that follows in the wake of each death, and the book is about systemic racism and poverty that is endemic to African Americans in southern Mississippi and that harnesses the men in Ward's life on a path toward death.

Men We Reaped was the second book by Ward that I have read in the past three years.  I finished Salvage the Bones in September of 2012.  I finished the book on a plane between Columbus, Ohio and Chicago.  While I read Salvage the Bones, I struggled to make a connection.  But on the plane, as I read the final scenes, which climax as Hurricane Katrina blasts the Mississippi coast, I lost my breath and started to cry.

It takes me about two months to read a book.  That means, I've probably read 13 other books since September of 2012.  No other book has stayed with me like Salvage the Bones.

Men We Reaped had a similar impact.  From page one, I enjoyed the book, but not the same way other readers     did.  On Twitter, I read about a woman who didn't put the book down after starting on page one, reading the entire book in 12 hours.  I put the book down every night. For me, the book followed the typical two month pattern. Eventually, the book bowled me over, and left an impression I can't shake.  The impression is particularly deep because of what is happening in Ferguson, Missouri, and the failure of the Grand Jury to indict the police officer who shot and killed Michael Brown, the unarmed African American teenager.

For me, the book transformed on page 187, when Ward, an underclassmen at a high school where she is one of barely a handful of black students, stands up to a group of male upperclassmen.  Out of earshot, the boys had made a joke about lynching black people.  Ward, though she didn't hear what they said, knows they are laughing at her.
       "What did you say," she asks them.
       One of the boys laughed, saying, "you know what we do to your kind."
       "No I don't," Ward said.
       The group laughed at her.
       At this point, Ward knows about what they are joking.  But she says to them, "You ain't going to do shit to me."
       The demeanor within the group of boys changed.  They stopped laughing.  They changed their posses, folding their arms, positioning themselves defensively.  Ward, hiding fear, said, "you ain't going to do nothing."
      Moments later the group of boys moved on down the hall.

As a person with dwarfism, my experience is different from that of a poor African American girl going to school with mostly white people who are wealthy and racist.  But as a person who has faced bigotry, I can relate to the experience of facing a hostile crowd and staring it down, picking one person in the crowd and focusing on that person, daring that person to translate their verbal assault into physical action.

Ward spoke at the Harold Washington Library in Chicago on
November 1. 

I know my experience as a dwarf is different from that of an African American because I've never been hurt because of my physical difference the way so many people have been hurt and killed because of the color of their skin.  Perhaps, I feel confident that I never will be hurt, and that is why I can sometimes challenge those who verbally assault me.  I am sure many other people can't do that.  They probably would be physically hurt.  Ward knew she was risking her safety.

Though our experiences may be different, after page 187 in Men Who Reaped, I felt connected to Ward in a small way.  Because of that, Ward has become my favorite writer.  Though I am devastated for her because of all that she has lost, I am grateful for what she has been able to share.

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.