Sunday, July 28, 2013

Open for interpretation

Here I am with Andrew Solomon, author of Far From the Tree
Last weekend, at the Disability Pride Post Parade Celebration, as I was hanging out in the shade under a tent in Daley Plaza, a woman asked me, "What happened with Andrew Solomon?"  Solomon is the author of Far From the Tree, a book that multiple different disability and marginalized communities. In the book, Solomon identifies what he calls Horizontal Communities.  A horizontal community is a group that a person is born into, but no other member of the family is part of the community.  For example, I was born with dwarfism.  Since no other member of my family is a dwarf, we don't share a vertical or generational community connection.  To connect with other people in the community, I have to move outside of my family tree, or I have to move horizontally.  Solomon's book includes a chapter on dwarfism.  He interviews multiple people of short stature and their family members, some of whom I know.  In the chapter, dwarfs and their family members share struggles, but within the struggles that result from orthopedic issues and stigma related to difference, there is a strong sense of dwarf community that generates pride and empowerment.  Solomon gave the keynote address at the Awards Banquet at Little People of America's National Conference. 

At the parade celebration, a negative vibe bubbled through the woman's question about Solomon.  I didn't know what she meant by the question, but I had a sense she believed something bad happened regarding Solomon.   When I asked her to explain, she mentioned a few Facebook Posts.  Someone who had been in the audience during Solomon's address at LPA posted several comments during his speech. In one of the posts, she joked that the speech was so depressing she wanted to slit her wrists.  Another post compared listening Solomon's speech to watching Hotel Rwanda because both were depressing. 

After the woman at the parade explained the question, I remembered hearing about the posts on the night of the awards banquet. I didn't think much of the posts at the time, but was concerned to learn that the posts impacted people who had not been at the conference, and I worried that the posts might impact might impact many more people negatively. Such a vibe might prevent people from reading Solomon's book.

When I think deeply about it, I can understand how a person might be overwhelmed with the negative when reading Far From the Tree and listening to Solomon.  The book indeed deals with negative issues.  Not only does it address the many physical issues that people with dwarfism are forced to confront, it covers how many doctors respond when they diagnose dwarfism and how expectant parents sometimes are repelled by that diagnosis.  It's the focus on the medical and on the negative that I believe must inspire some disability groups to integrate the search for a cure into their missions and objectives.  Little People of America is not about research, and is not about cure.  With this in mind, Solomon's message might be interpreted that way. 

In my opinion, Solomon's true message is about the identity that emerges within individuals as result of confronting physical and social challenges.  It is that identity that strongly connects people with dwarfism, even if they are different on so many other levels.  It is that identity that brings people back to Little People of America National Conferences year after year.  It is that identity that inspires LPA embrace dwarf pride over dwarfism research.  That identity, far from negative, is full of power.  But what do I know.  I always thrived on depressing movies. I'd much sooner watch Ordinary People than Rudy

Sunday, July 21, 2013

2013 Pride Day

LPA at the 2013 Disability Pride Parade
Yesterday was the 2013 Disability Pride Parade. The first parade in Chicago stepped off nine years ago.  I missed the first parade, and I've missed at least one since then, but the parade is one of my favorite events of the year, in particular when Little People of America marches.  Yesterday, six of us from the Windy City Chapter of LPA marched.  We don't have a float and our group is always one of the smallest contingents in the parade.  Despite our numbers, I always feel empowered when marching with other members of Little People of America.  So often, as people of short stature, we are involuntarily on display.  We attract unwanted attention and are sometimes the unknowing subjects of photos and videos.  While marching with the parade, it's as if we regain some control.  Walking down the street, we display the pride we feel as members of the dwarfism community.  I am sure that while we march we get our pictures taken by strangers who happen to be on the street through which the parade passes.  And I am sure some of the people who took our photos yesterday captured our image with the same malice as those who take our picture when little people are just minding their own business.  But there is always a different feel to it on disability pride parade day. On random days throughout the year, the photos feel like a violation, as if the perpetrators have taken something from us.  On parade days, the photos are just a nuisance that don't compete with the strength of the community.  Also, I hope that strangers who see us marching as part of the parade learn something about the dwarfism community.  Amidst the other disability groups, we are part of a community that has a history of struggle, achievements, and civil rights.  Being a part of the larger disability community gives individuals with dwarfism definition.  So often, people with dwarfism are treated differently because strangers don't make a connection between dwarfism and humanity.  It is my hope that strangers who see us marching within the larger community are better able to make the linkage between dwarfism and humanity. 

Access Living in 2013 Parade
For most of the history of the parade in Chicago, the route has ended at Daley Plaza, where there is a post parade celebration.  The parade followed the Daley Plaza Route yesterday.  Toward the beginning of the program, the program MC, Kevin Irvine, talked about pride.  He said that many of us are born with disabilities, but pride is not something with which you are born.  Pride is something you have to learn.  Pride is something you have to practice.  The Disability Pride Parade is a chance to practice that pride.  Marching with LPA, much more so than marching with Access Living, or any other group, I have the chance to practice my pride.  It's an opportunity I cherish because it teaches my how I should feel about myself.  And that's a lesson I can apply throughout the year.

Sunday, July 14, 2013

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. 

Saturday, July 6, 2013

International Alliances

Every year Little People of America hosts a national conference.  But attendance goes far beyond the borders of the United States.  At the 2013 Conference in Washington D.C., which wrapped up just a few days ago, there were people in attendance from at least 18 different countries, and from every continent except for Antarctica.  There was a lot of anticipation around the international delegations. 

In my case, I was particularly excited about the visitors from Uganda. Annet Nakyeyune is the founder of Little People of Uganda.    Little People of Uganda (LPU) started in 2007.  Since then, the founders have built a membership of more than 1,000.  Within the past few years, LPU started to correspond with Little People of America in the United States.  Part of that correspondence included the sharing organizational newsletters.  A few of the stories from the LPU Newsletter point out the differences between life in Uganda for a person with dwarfism compared to life in the United States for a person with dwarfism.  Most dwarfs who live in the United States can share many anecdotes that highlight discrimination and stigma that people of short stature encounter.  Sometimes the stories involve employment discrimination -- dwarfs have shared stories about being refused an interview because of their short stature; there are other stories of dwarfs who were denied reasonable accommodations.  Other stories involve the social stigma of difference that appears when dwarfs elicit stares, gawks, or photographs simply when they are walking down the street.  This type of marginalization can take a heavy toll on someone's life, from impacting their ability to make a living to impacting their self-esteem.  Though little people in the United States face challenges, I find it hard to complain compared to the challenges I know of now through learning about Little People of Uganda.  One of the LPU Newsletters included a story about a young man with dwarfism who had his baby taken away from him and murdered for no other reason than dwarfism.

With the story of the young man who lost his baby firmly implanted in my mind, I was thrilled to learn that Annet and her daughter Love planned to attended the 2013 National Conference in Washington, D.C.  Annet and her daughter's attendance would be a great way to strengthen the bond between LPU and LPA.  I hoped that the relationship between the two groups would be the start of an international coalition that could be used to fight on behalf of the Human Rights of people with dwarfism around the world. 
Annet of LPU presenting at General Assembly

Annet came to the conference equipped with stories about Uganda, which she shared with the LPA Board of Directors and with the membership at the General Assembly on Monday morning, July 1.  At both meetings, Annet ran through a power point presentation about LPU and dwarfism in Uganda.  The presentation included horrific information, about babies murdered because of dwarfism, about children caged for years at a time because of dwarfism, and about women who were repeatedly raped because of their dwarfism.  The stories and the facts were unbearable, but Annet presented in professional, formal style, showing little emotion. I don't know what she was thinking, but it seemed to me that she had to detach from the material emotionally, otherwise it would have been too overwhelming. 

Katie (wearing necklace from Uganda) and Gary.
Historically, not many people attend LPA's General Assembly.  Maybe 100 or 150 people attended on July 1 in Washington, D.C. But word of Annet's presentation soon spread and members not in attendance began asking what they could do to support LPU.  Jewelry that Annet and Love sold to raise money for LPU quickly sold out. 

My hope is that attendees of the 2013 LPA National Conference build on the energy that Annet and Love generated by attending the event.  I hope that we can all work together to build a coalition that supports our respective organizations and that supports international initiatives that raise awareness about dwarfism and that protect the rights of people with dwarfism.  Working together, we could generate the support needed for the Ratification of the International Disability Treaty in the United States and for implementation of the treaty around the world.  Working together, we could follow up on the idea of Little People Mexico and have the United Nations recognize October 25 as International Dwarfism Awareness Day. 

Annet and Love made a huge commitment to travel to the United States for LPA's Conference. Scores of other international attendees made a similar commitment.  Around the world, all of us should work hard and work together to find ways to follow up on that commitment.  Doing so, we could make significant progress individually and as a community.

Friday, July 5, 2013

LPA visits Capitol Hill

two men of short stature standing outside Senate Office Door
Ethan Crough (right) and Gary Arnold of LPA 
From June 28 through July 4, 2013, more than 2,100 people with dwarfism, their family members and friends gathered in Washington, D.C. for the Annual Little People of America Conference.  In many ways, the 2013 Conference was similar to previous conferences.  Like every other year, a DJ spun records each night to which hundreds of people young and old danced.  There was an expo with many vendors who displayed products that support people with dwarfism.  There were three days of informative workshops, and more than a score of doctors traveled from around the country to provide free medical consultations.  Each of these is vital to the success of each conference. 

Unlike year's past, the 2013 Conference was held in Washington, D.C.  Washington presented an opportunity to schedule new programming, including a trip to Capitol Hill.  To take advantage of this opportunity, a handful of LPA Members met early in the morning on Friday, June 28, and caught a cab from the hotel to the seat of the Federal Government.  Our group included members from Florida, Indiana, Pennsylvania, and Illinois.  Between us, we scheduled seven visits with the offices of National Senators and U.S. Representatives.  We entered the meetings equipped with a Fact Sheet about Little People of America and a copy of LPA's Policy Agenda, which had been adopted by LPA's Board of Directors in April 2013.  The policy agenda was an exciting development for Little People of America.  With advocacy around the ban of dwarf tossing and with a handful of medical position statements, the organization certainly incorporates policy work, but to my knowledge the agenda adopted in April is the organization's first standing policy agenda.  The agenda incorporates an International Disability Rights Treaty, protections for people with pre-existing conditions, anti-bullying legislation, and a measure for the U.S. Department of Agriculture to stop using the word "midget" as a size classification for certain products.

For the most part, the group met with staff who were very supportive.  The day included visits to the offices of Senator Harkin of Iowa, Senator Durbin of Illinois, and Representative Davis of Illinois, all of whom are historically strong on disability rights issues, which by and large is the umbrella that the LPA agenda falls under.  During a visit to Senator Kirk's office (Illinois), I was told by his staff that the Senator had decided to support the International Disability Treaty.  Immediately following the visit, my voice and hands shook a little bit as a I called the Access Living office in Chicago to share the news.  For months, Access Living and other disability groups had been organizing a grassroots campaign to earn Kirk's support for the Treaty.  News of Kirk's support for the Treaty quickly spread over social media.

Olga, her family and Gary Arnold with Rep. Davis
The visits to Capitol Hill were about more than earning support for a policy agenda.  After all, most of the people we met with were already in support of most agenda items.  The visits were just as much about Little People of America introducing itself to the Federal Government and about Little People of America members growing comfortable with policy.

Indeed, by the end of the day, a few of us had grown comfortable with the process.  Olga is a member of Little People of America from Florida.  She is the mother of a ten-year-old person of short stature and two average stature children. The International Liaison for Spanish Speaking Countries, Olga brought her entire family along for the legislative visits.  Around 2:30 p.m., the group finished up the last of our scheduled visits.  We gathered near one of the exits of the Senate Hart Building and were preparing to go outside, catch a few cabs, and return to the hotel.  But before we had a chance to leave, Olga's face grimaced.  She looked to her right at the staff directory and then mentioned the name of Senator Rand Paul from Kentucky.  Paul is against the International Treaty and has spoken in the past against the Americans with Disabilities Act.  Olga knew that Paul was pro-life.  In Olga's mind, there was an inherent contradiction between supporting the rights of a child inside the womb, and not supporting the rights of a disabled child after he or she had been born.  Though we had not scheduled a visit with Paul's staff, Olga wanted to stop by his office.  For a few minutes we talked about what to do.  But it was clear, if we didn't stop by Paul's office, there would be a deep feeling of dissatisfaction.

A few minutes later, six of us stepped through Senator Paul's door.  Like most of the other Senators and Representatives that day, Senator Paul wasn't there, but Olga persuaded the person at the front desk to find a policy person on Paul's staff who could spend about ten minutes with our group.  We went down the hall to one of the Senator's conference rooms and sat down with a member of Paul's Foreign Policy staff.  Olga went to work.  She voiced her concern over the apparent contradiction in positions and explained why she supported the treaty.  Olga's husband chimed in, adding that the treaty also supported U.S. Veterans traveling abroad. The young staff person listened intently and nodded as they spoke.  Then he thumbed through a writing pad he carried, looking for notes he had made previously about the Treaty.  I tensed up in anticipation of what he might say, worried that we might not have a response.  But Olga, her family, and I, were ready.  Nothing the staffer said could stand up to intrinsic importance of the Human Rights of people with disabilities here in the United States and around the world. 

We finished the meeting and returned to the hotel full of energy that came from making the unexpected visit to Senator Paul's office. We knew that Paul would not change his vote as a result of the visit, but we were excited.  By simply making visits to offices on Capitol Hill we had accomplished what we set out to do. We introduced Little People of America to many offices. But within that modest goal, we pushed the envelop further by making unscheduled visits and putting the importance of our policy agenda on the same level as the organization. I look forward to more such visits in the future.