Gary Arnold stands just 4-foot-2, but he’s a big man in the Little People of America, a nonprofit that provides support, resources and information to individuals with dwarfism and their families.
Arnold, 47, of Oak Park, is also the program director at the Progress Center for Independent Living on Madison Street, an organization that provides social services to people with disabilities. He was born in 1970 with a genetic condition called achondroplasia, or dwarfism. Growing up in Madison, Wisconsin, Arnold never expected to hold such a high-profile position in an advocacy organization.
“I kind of felt that it was my job to fit in,” he said. “I knew there would be barriers in my way but believed that it was up to me to navigate around those barriers.”
As a student at Beloit College, Arnold watched the growth of peer groups for marginalized people like African Americans and LGBT communities, and got involved in some of them. Those groups provided models of people who claimed their identities instead of simply trying to fit in. But because he was the only little person on campus, there was no group specifically for him.
“That helped me to identify a need in my life,” he said. “I wanted to connect with more people with dwarfism.”
He started going to conferences sponsored by the Little People of America. There, “you can be in a room with people who had different backgrounds and political opinions but there was still an unspoken connection, because you didn’t have to explain dwarfism to anyone.”
In 1999 he also began working in public relations for Access Living, an organization which, according to its website, “is a change agent committed to fostering an inclusive society that enables Chicagoans with disabilities to live fully-engaged and self-directed lives.”
Eventually Arnold’s work at Access Living and his involvement with Little People began to overlap and reinforce each other. He started writing reviews of books and movies for Little People’s quarterly newsletter and offered to help the organization’s PR person cover a conference in 2006. A few days before the conference, the guy inexplicably told Arnold he couldn’t make the annual event. “Can you handle all the PR stuff on your own?” he asked.
Arnold said yes. To him, covering all the speakers was exhausting and overwhelming, but his coming in from the bullpen to save the game performance led to being appointed to the Little People’s board of directors. He was elected as the organization’s public relations director in 2008.
The work combined his desire to fit into society as it is while working to change the world to the way it should be.
“For me, it’s relatively easy to fit in. I don’t have as many barriers as someone who is in a wheelchair,” he said. “Half the businesses on Madison Street, for example, are not ADA-accessible. I don’t have to worry about that myself, but for someone in a wheelchair it’s a problem.”
Whether these businesses consciously ignore the needs of the disabled or not, the desire to more aggressively change the world inspired him to run for president of Little People in 2011. During his tenure at Little People, the organization partnered with national groups like the National Association of the Blind and the American Association of People with Disabilities.
“So (now) when people with dwarfism have an issue, we’ll have support from other powerful disability groups. We also worked together on the issue of preexisting conditions during the debate leading up to the passage of the Affordable Care Act,” he said.
Arnold finished his term as president of Little People last July. In some ways, he said things have gotten better in this country for people with disabilities. After all, he is the program director for an organization with the words “independent living” in its title. But the tension of trying to fit in as a person with a disability while working to change the environment can be frustrating, he said.
“It’s important to have spaces where we can express that frustration and not be judged as pitying or feeling sorry for ourselves. For example, one guy I follow on Twitter said he was jogging the other day and a guy yelled out of his car window ‘Yo, midget.’ That’s the most derogatory thing you can say, and it’s very important to have a platform on which to say, ‘This still pisses me off,'” he said, later adding: “It gets easier, but it doesn’t get better.”