By Alice Krueger
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| Donna Davis, March 2018 Image courtesy of Bernard Drax |
I interviewed Donna about her work and conclusions from this study, and about the project summary documentary by Bernard Drax.
Q- You are a professor in the University of Oregon School of Journalism and Communication. What were the communication aspects of this research project?
DD- I was terrified all along the way, not really knowing how it would land. We had many tough audiences, with perhaps academics being the toughest.
But also the disability community holds many opinions about what is appropriate language. I didn’t want to misrepresent anyone, so it was important in Drax’s film to let people speak for themselves. I think it’s important to remember what Daisy Gator said: “Disabled people are overwhelmingly presented poorly. Most include awful stereotypes like disabled characters who sit around all day thinking about how horrible their disabilities are; whereas in fact, disabled people just don’t think like that.”
We have a vibrant community of capable individuals. They expressed themselves clearly, both on Ethnographia and in the documentary. My heart has been touched by the response to that video.
Q- Are people with disabilities in general not good communicators?
DD- A lot of people, not just people with disabilities, are not good communicators. We all have strengths and weaknesses. I think symbolically, Cody would be thought of as a poor communicator because his tongue does not allow him to speak clearly. But if you slow down and get to know him, he’s an extremely good communicator. He observed that women want you to communicate in complete sentences. He also noted that when he has to use voice in Second Life, people think he is retarded, his word. He’s actually bright, witty and charming.
Q- In other words, it takes two to communicate, the one sending the message and the one receiving it.
DD- Right, it’s good communication when the recipient of Cody’s speech tries to understand. Then you get the treasure at the end of the rainbow.
There can be many reasons for communication disability: being slow putting thoughts into sentences, low vocabulary, lack of sensitivity… It’s often a hidden disability.
Q- Please say more about hidden disabilities and communicating for self-advocacy.
DD- In the video, Jadyn said, “People with mental illness sometimes refer to it as ‘invisible disability’. … When somebody wears a sling on their arm, nobody asks them to lift a heavy object. … You do NOT walk around in real life wearing a sign [indicating your hidden disability], and it might be nice if we could.”
Some people are good at overcoming their disabilities, those with the internal strength to “do it anyway,” but others are beaten down. You have to have confidence to speak up. Some people speak constantly and in some cases as a result, others may tune them out when they become too domineering. Whether in-world or in RL, there’s a phenomenon known as the “Spiral of Silence” -it occurs when people speak up only to be silenced, embarrassed or ignored until they no longer speak up at all. We try to make sure everyone has a voice in our community and are grateful to give them a voice through Drax’s video.
We know that in disadvantaged communities, people often communicate from a place of hurt or anger. Hurt people tend not to speak at all; angry people often yell. And when someone is yelling at you, you tend to put your self-defense walls up. You need to find the sweet spot. Find the right message, the right voice, and the right medium for effective communication. I work with people, though, who also strongly believe that some people never hear a message unless it’s at the highest volume and in a way that affects the intended audience personally. It’s how we end up with protests and revolutions and they’d argue that sometimes it takes that to create change.
Q- Let’s talk a little about the “Our Digital Selves” video.
DD- We had so much fun! I’ve spent the last ten years in Second Life. I’m one of those people Warren Buffett meant when he said how great it was to get paid to do what you love. My son is a gamer, and he used to joke that it wasn’t fair that I got to hang out in “games” to get my PhD.
Every day in this community I discover new things about myself. It is so much fun being with creative, resilient people. They live with things most people don’t have to deal with, but they shine. It gives me gratitude for my abilities, not to take them for granted. Attitude is so powerful.
But resilience isn’t a choice for everyone. Shyla started the video by saying, “That’s another thing about being disabled… People are like, ‘Well, just hold your chin up!’ or ‘Be strong!’” They hear that all the time, but how are you supposed to do it? I am always in awe when someone in the community is down hard and you see that sense of resilience; they find another creative way to move on.
Q- You’re talking about your previous experience doing research with the Parkinson’s community in Second Life, aren’t you?
DD- Right. DB in one of our discussions said that he wondered what it was that allowed some people to do things when others would just curl up on the couch and wait to die. All the people in Creations for Parkinson’s are resilient. For some people, receiving a diagnosis of a disease that is going to take things away from you, they give up, but others remain vibrant. That strength is a magical gift.
Q- But your work with the Parkinson’s community was not your first virtual world research.
DD- My dissertation research was done in Second Life. I have had a divergent academic path. I started as an undergrad pursuing a degree in pharmaceutical chemistry, and ended up graduating in journalism. I started my PhD research on family media literacy, but ended up working in virtual worlds. I was studying how relationships in Second Life evolved as they moved to the physical world. I was interested in the concept of relationships. Then a friend introduced me to Barbie Alchemi, the founder of the Creations for Parkinson’s community, and I changed to looking at community relationships. That was about eight years ago.
Q- You’ve learned some things about communicating as a researcher about disability.
DD- There are so many disparate expectations of how the disability community wants to be communicated. Some people don’t want to be called “deaf” and others don’t like “hearing impaired.” You end up angering people who don’t like the terms you use. You want to get on the same page as the community you are describing, or you will step on a landmine. You want to talk about disability in a way that people can understand and respect. To do that you need an open mind, you have to listen carefully and you can then only do your best to represent the people you’re working with, with compassion and accuracy. “Tell me what you feel and why, so I can tell your story accurately.” We may need to get more unity and a common language so that outsiders can understand the community better.
Q- Is there really “a disability community”?
DD- I am going to waffle on that. Tom and I come from different disciplinary backgrounds. Community as defined in anthropology is very complex! “Do you identify as disabled?” “Do you have a particular disability, based on a diagnosis?” In Ethnographia, the community is defined by its shared space and experiences. In the Parkinson’s group, it’s about support. In Virtual Ability, the bond is from identification as disabled. There are also the legal terms, which are necessary for determining service provision. There are ways to categorize by experience or identity.
In Ethnographia, we blend them all. Participants identify as disabled, they are in the same place, sharing the same experience, now have developed friendships and support.
There are lots of communities, and tension develops as they grapple with their differences. You can identify within the disability community. Some don’t want that label at all. They compensate; resilient people may (hopefully!) find ways to be open about their disability. “Understand that the disability is me, but it’s not all of me.” They taught me and Tom this, and Draxtor captured it. “My avatar is me, but don’t define me as those labels. Get to know me.” Take time to get to know the whole person. Tom has a great quote about this in Coming of Age in Second Life that he refers to in the video: “In the physical world, you get to know people from the outside in, but in Second Life, it’s from the inside out.”
In Second Life, you are not defined by labels. You create your labels visually and through your behavior. The environment here slows things down. You get to know people by conversation and the way you are treated.
Melyna in the documentary said she has a male avatar to use for blogging about male fashions. This shows how identity is tied to the avatar. In virtual worlds, you can choose an identity that fits your role. I guess in a way that unfortunately can also reinforce labels.
Q- One of your job responsibilities is directing the Strategic Communication Master’s Program. What do you mean by “strategic communication”?
DD- It’s an interesting time in the traditional journalism community. Journalists now are low on the totem pole of trust. Strategic communication means storytelling, except not the kind that is traditional journalism. For example, branding a nonprofit through many communication channels. It’s about how we get a message out. What is the message, who delivers it, who will receive it, what platform is used?
Tom and I are different here too. He doesn’t define virtual worlds as social media. I do. It’s a mediated platform. If you lose power, the medium goes down. I define virtual worlds as a social medium. Social media today may be text based or visually based, but it’s always about social connection between humans.
To me, Second Life is like a parallel universe in which you use the same tools to communicate like instant messaging and “emailing”. However, the platform of Second Life as a social medium allows both place and embodiment, therefore offering a rich context for storytelling and community building through embodied interactivity. The pillars of community building are embodiment, place and communication. I call virtual worlds social media on steroids, and embodiment is the steroid.
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| Donna Davis, as her avatar in the film Our Digital Selves. View the film here. |
DD- The light bulb aha moment for me came from Shyla creating the CENT [Capable Entrepreneurs Nurturing Talent] group. It’s about the spirit of entrepreneurship, creating opportunities for what can be done in a virtual world that can’t be done in the physical world.
Sometimes what is started in the virtual world grows into the physical world. Or the other way around. Solas from the Parkinson’s group brought her skills as a fashion designer into Second Life. Like communication, entrepreneurship has to be two ways.
Q- What do you think is the purpose of virtual worlds?
DD- Everyone uses them in deeply personal ways. Some look for community, others for privacy. Some come to the world to create, others to relax. It’s a life experience, whether virtual or physical.
Your avatar is your brand. Human and avatar experience are one and the same. I don’t believe you can pull them apart.
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