how to advocate for yourself

Show Us Your Hands!: A Story of Hope and Community

Lene Andersen Health Guide May 16, 2012
  • “I was always ashamed of my hands.”

    “I used to hide my hands.”

    “I never shared a photo of my hands before.”

     

    Five months ago, RA Guy put out a call for submissions to a community collage showing the hands of people living with different kinds of inflammatory arthritis. "I knew I had tapped into something powerful when I saw my inbox completely full of photos," RA Guy says. Many of the photos were accompanied by remarks like the above about how empowering it had been for the person to take the picture. “I felt that this deserved to be something more than just a one-time project, so I started thinking about people who I would enjoy working with. Lene’s name and Cathy’s name immediately came to mind." At about the same time, I’d myself had a lightbulb moment while at the dentist and hurried home to write RA Guy an e-mail suggesting a collaboration. All three of us were already pretty overcommitted, but as RA Guy puts it, "when Lene sent me an email, I sort of figured that the three of us working together was meant to be."

     

    We very quickly had a name - Show Us Your Hands! - and a website. The goal of our organization is to unite and inspire the inflammatory arthritis community. RA Guy says "we hope that our projects will raise awareness of this group of autoimmune diseases. While the challenges we live with are many, we hope to show that despite the pain and disability, our hands can still do a lot."

     

    Interactive Collage and Poster Project

    Show Us have your Hands! has already completed several projects. The interactive collage composed of photos of hands submitted by people from all over the world has already reached 1055 photos! The Commemorative poster of the first 483 hands was released in December. I bought one and may have been the first person who gave it to their rheumatologist. She loved it, plans to get it framed and wants to display the framed poster in her clinic!

     

    On May 1, 2012, we released our 1,000 Hands poster to kick off our celebration of Arthritis Awareness Month. Both posters are available for purchase. We also provide free letter-sized downloadable PDFs of both the Commemorative and 1000 Hands posters that people can share with their family, friends, doctors, coworkers, etc.

     

    Our Hands Can!

    In addition to the posters and the online collage, we wanted to also create something that people could hold in their hands, a tangible manifestation of hope and optimism. "Something that people will pick up and start reading. They will learn about our stories, our lives, and our hands…and in the process, they will learn about the inflammatory arthritis diseases with which we live," RA Guy says. We very quickly settled on creating a photo book with in-depth stories of what people could do with their hands. The call for submissions went out in mid-February and we received hundreds of stories. The final participants were selected based on a number of criteria, such as age, gender, country and type of inflammatory arthritis. And then the real work began! Each of us - myself, RA Guy and Cathy - worked with 10 people, guiding them through drafting the stories and taking photographs of their hands. We also included our own stories. It was a busy and very labor-intensive several weeks where we juggled an ever-growing list of tasks involved in designing and editing the book. Our Hands Can! was released onMay 7, 2012.

  •  

    When I saw the book on my monitor, I got chills, but it was nothing compared to holding it in my hands. When I did, I cried. This collection of inspiring and moving photos and stories is a powerful reminder that regardless of how much we hurt and may have to do things differently, we are determined to go on with our lives. For Cathy, creating this book "is one of the first positives I have seen. The photos are stunning and the stories lift your spirit.  I can easily see pulling this book out on "flare days" to remind myself of what I'm capable of doing."  For RA Guy, “being able to see everything that our hands can do made me proud to be part of this community and it made me determined to keep on doing everything that I most enjoy, no matter what happens to my hands."

     

    Taking part in this project was also very meaningful for the participants. Samantha Legere told us that “being part of this has made me feel proud of who I am with rheumatoid arthritis and all for the first time in a long time.” As news of the photo book spread in the community, others like Kate also commented on the "positive celebration of a community and those amazing hands!"

     

    The Future

    “With no outside funding, we have managed to build a website and interactive collage that continue to grow and launched two posters and a photo book. Quite a feat, especially considering that fact that all three of us live with RA!” RA Guy says. For myself, our accomplishments are an indication of how well this team works. The last five months of working with RA Guy and Cathy has been incredibly joyful and exciting.

     

    The next goal of the Show Us Your Hands! team is to turn the organization into an official 501(c)3 nonprofit organization. That, however, costs more money that we've been able to raise through sale of the posters. In mid-April, RA Guy published his "birthday wish" of raising $2000 to help us become a nonprofit and a month later, the goal has been reached. Beyond that, we will - in the words of RA Guy - "continue to create effective awareness projects, grow the community collage project, continue creating relationships with other nonprofit organizations."

     

    Our Hands Can! is available in hardcover and softcover. All proceeds go to running Show Us Your Hands!

     

    Don't forget to enter our amazing arthritis awareness contest by May 31, 2012!


     

    Lene is the author of the award-winning blog The Seated View.