Lovely computer geek, Jennifer Cole, is a founding member and Director of the GimpGirl community. GimpGirl was created to form a sense of community not only for Jennifer, but for other strong, determined, disabled women. Whereas other groups tend to focus on one specific disability, GimpGirl focuses on the commonalties in the experience of being disabled. This is especially helpful for individuals living with more than one known issue. Jennifer has proven that technology can not only be assessable, but transformative.
AXIS: Tell us a little bit about yourself and your disability?
Jen: I am an almost 37-year-old woman who lives in Washington state with my partner and his son, whom we raise together. I have lived in every West Coast state in the lower 48. I am a computer geek that surrounds herself with interesting, intelligent, honest people. I love doing research, whether genealogical or otherwise. I love learning, and I am constantly studying different languages and cultures. I am a total introvert, though I can also speak to a roomful of hundreds of people at the crack of dawn if the need arises. I have a severe, congenital, undiagnosed physical disability, and I use a power wheelchair for mobility. I also really hate talking about myself, so on to the next question…
What inspired you to start GimpGirl?
Initially, GimpGirl was started to form community for myself and other determined disabled women I knew from DO-IT and the general community. Many of us felt somewhat isolated in our own homes for various reasons, and we wanted someplace that we could connect with each other, learn from each other, and support each other through difficult times. Most of us were early adopters of the Internet, which provided a means of bringing us together in a new way that really reached into whatever situation we found ourselves in. I was also part owner of an Internet Service Provider, so I was able to provide all of the technical services we needed at no cost. We have always had people who were willing to volunteer or donate services, which is a huge hurdle for most fledgling organizations. The technology we use has changed considerably over the years, but that base drive to form community that is real, positive and supportive has stayed with us for over 17 years now. We all have a lot to learn from and teach each other, a lot of broader progress to make, and we have countless stories to share.
In this world of socially diverse platforms what helped you decide on SecondLife as a meeting place?
Whenever we consider what technology to use, we consider two main issues: accessibility and trends. By far, the most important issue that we look at is accessibility for all of our members and volunteers. Because we do not focus on specific diagnoses, but rather on the identity of being disabled, our members have varying needs in terms of accessing technology. It is not always easy to balance those needs, but it is unacceptable to us to not try our hardest to be universally accessible. Many of us were not accepted into other groups because we either didn't fit their mold or the group just didn't work with our personal needs. Even though I have a noticeably severe physical disability, I was not accepted into disability groups when I was a kid because no doctor could ever put a label on my particular combination of issues. Other people have dual diagnoses. We feel that is especially important to really focus the general conversation on the commonalities in the experiences of being disabled, rather than specific barriers that someone with one type of disability might face. That is somewhat unusual in the history of disability groups. When we first started looking at Second Life, I was really excited because there was a huge community of disabled people already there (so it was trending in our target population), but I didn't really want to start something there because there was huge accessibility problems for people who use screen readers or just generally have issues using a graphic interface. We had previously used a platform called MOO for synchronous meetings, which is a text-based predecessor to virtual worlds such as Second Life, until use fell off. A private company offered to donate us a huge space on Second Life to play with, and in the process of exploring the world in general we found a support community for autistic people that was using an ingenious relay device that allowed synchronous text communication to happen between Second Life and an IRC channel. IRC stands for Internet Relay Chat, and is basically a simple to use text chat room that is accessible to people who use screen readers or prefer a text interface. That solved our accessibility problem for the most part better than any other synchronous communication tool of the time, and provided us a means to work with other disability organizations as well. For individuals using Second Life, it allowed for them to still play with their embodiment and image in a way that text based platforms do not. In addition to synchronous text meetings, we also make sure to have an asynchronous platform that is updated regularly to encourage conversation if people prefer a different communication pace. The popularity of Second Life is waning at this point – as technology often does – and we will probably move away from having meetings on Second Life and utilize some other tool at some point if we feel it meets our needs better. We go where the technology and general population go.
What do you want people to take away from a support group meeting?
I would want someone coming away from any of our communities or events, including a support group meeting, feeling like they are part of a community that really has their back. Many of us aren’t really taught to advocate for ourselves or are exposed to all life has to offer, whether we were born with a disability or acquired it later in life. It is often something we have to teach ourselves as we go along. It is this different experience that most parents, partners and friends may not really understand, even with the best of intentions. Especially when you hit adulthood, there is this overwhelming amount of things you suddenly have to coordinate just to live your life, and the majority of us don't really have exposure to other people who have lived through the same experiences to look to off-line (unless you are lucky enough to live in a population center). When people become involved in GimpGirl, they have access to people who understand their experience, can help point out resources, and just generally be there for support. We teach each other advocacy skills, and remind each other that we are all fighting similar battles. We share in each other’s successes. We can talk to each other in relatively safe spaces that allow people to really share anything they are thinking, or facing. There is a lot of power in that commonality.
What do you think is the biggest hot button issue in the disabled world and why?
That is a really difficult question to answer, because there are so many different groups within the larger "disability community" and they often have varying focuses. I don't really feel like it is my place to say what the one hot button issue is for the entire community. As a community leader that tries to create space for shared, cross-disability expression, I feel like defining a focus would be irresponsible of me (even though I clearly have many concerns as a disabled woman personally). My focus is always on fostering conversation so that people from those various groups can talk about the issues that are important.
What would you do if you won the lottery?
I am a deeply practical person, and also chronically poor, so if I won the lottery I would pay off my house (so that I no longer had to pay a mortgage payment), make a few minor home repairs that are pending, and invest the rest of it so that it provided a meager income and covered my expenses for as long as possible. I'm not sure that would be for that long with caregiver expenses, even with available buy-in programs, but a girl can dream!