Jennylin Arashi / Jennifer Cole
Muse Carmona / Katherine Mancuso
November 22, 2009
These are the speaker’s notes for the presentation, which were pasted into text chat for those who could not hear. The question and answer session is posted at the end of this file.
Welcome to Virtual Praxis II and thank you for joining us! This is the Women with Disabilities event, presented by the staff at GimpGirl Community. This event is being relayed to our external chatroom for those that cannot access Second Life (that is why you see people talking in green text that have no avatars and why people in the chat room see user names such as SL-JennyLin|Arashi), Please hold questions and comments until after our presentation. We will have time for a question and answer period at the end.
JennyLin Arashi: My name is Jennifer Cole, and I am a founding member of GimpGirl Community, as well as the Director.
musecarmona: My name is Katherine Mancuso, and I joined GimpGirl in 2004, and joined the staff in 2007; I’m a GimpGirl Community liaison, as well as a research fellow who attends Georgia Tech and works at the Center for Assistive Technology & Environmental Access.
The GimpGirl Community (http://gimpgirl.com) was founded in 1998 as a place where women with disabilities could talk about the challenges they encounter and develop their unique identities together. Our members come together to share their lives, experiences, problems and solutions in a safe space that focuses more on the people they are, and less on what disabilities they have. We meet weekly on Second Life and IRC, and in between meetings we weave our threads together with forum and blog posts on Twitter, GimpGirl.com, LiveJournal, Facebook, and Flickr.
We are one of only a few organizations online that is concerned primarily with providing social support, being radically inclusive of all women with disabilities, and teaching. As we have grown, we have found ourselves in a position where, as we provide support, we also begin to function as a place where information can be collected and shared, informally and in more formal contexts.
We’ve come across some sobering statistics about women with disabilities; what’s also sobering is that most of the available statistics have to do with women with disabilities in the United States. Other research just isn’t available, even though we know that there are millions of women with disabilities in all countries of the world, and they are represented in our membership every day.
Here are some of the US-based statistics we’ve encountered:
At least 20% of U.S. women have some kind of disability. Women with disabilities face the same issues all women do, but generally at higher rates and with added barriers
Women with disabilities struggle with poverty, like many women in this world do, but more than 2 1/2 times as many live in poverty as women without disabilities. That is more than a quarter of all women with disabilities, which is a rate higher than men with disabilities in every age group according to the 2003 U.S. Census.
According to Smith and Ruiz (2009), studies have shown that women with disabilities are more likely to have healthcare coverage (92.1% vs. 86.9%). However, women with disabilities are much less likely to gain access to healthcare services due to costs, limitations in coverage, and inaccessibility.
The vast majority of primary care medical offices are still not in compliance with the Americans with Disabilities Act (ADA), and doctors generally have no training on the complications related to disability-related diagnosis, particularly in regard to reproductive care.
In a Center for Research on Women with Disabilities (CROWD) study on access to healthcare, nearly 1/3 of women polled stated they had been denied access to services solely because of their disability even though it is illegal to do so.
Women with disabilities were slightly less likely to have received breast cancer screenings and extremely less likely to have received a pap smear in the past year, according to a study by Armour, Thierry, and Wolf (2008).
The rate of abuse of women with disabilities is similar to that of women without disabilities (52% over the lifetime of a woman), if you take women with disabilities as a whole (rates of abuse can be drastically higher among women with certain types of disabilities), however the abuse tends to be more frequent, over a longer period of time, and by more people within that individual woman’s life.
To women with disabilities abuse is not only physical, mental, and financial, but also includes prolonged lack of assistance with activities of daily living like eating, bathing and using the restroom (neglect), and withholding assistive devices (walkers, wheelchairs, etc.) or medication.
Women with disabilities also have fewer opportunities to leave an abusive situation.
Medical and mental health professionals do frequently not understand the breadth of abuse, nor do law enforcement officials and social workers involved in providing assistance and refuge.
Studies by CROWD show battered women shelters do not provide adequate disability services (other than mental illness services) that would allow a woman with a disability to access their services (such as attendant care, and other supportive services needed to function and deal with the trauma of abuse).
There is also a severe lack of any kind of outreach by shelter programs geared toward women with disabilities, even if accessible services are available.
Our bodies are not viewed as sexual by the vast majority of society, and frequently if they are sexualized it is in a fetishized way by “devotees” whose interest is in the paraphernalia of disability and in “caring” as a form of power play. This disempowers the woman as a whole sexual being and makes her body an object.
Women with disabilities often face these challenges in silence and isolation due to disbelief that such abuse and discrimination are possible, failure to recognize that people live at the intersection of class, ability, and gender oppression, and lack of education about the issues, even among dominant feminist and disability communities.
Despite all of these challenges, or maybe because of them, women with disabilities are vital individuals that have the ability to create not only their own life and identity, but also have much to offer the world.
As an organization, it has always been important for us to do what we do online. This helps us reach people who might not otherwise be able to find support in their home or family lives, local communities, states, or countries.
These statistics, and even more than that, the conversations and stories that we share, teach us that there is a wealth of experience among women with disabilities across age groups, cultures, and many other identifiers. It is important for us to reach people where they are, to give them a safe space to share, so that we can begin to fill in the gaps, and learn from each other.
Along the way, we discover differences, and also some common ground among many of our members:
Many of us have the ability to see the world from both the caretaker and receiver of care at a younger age, giving us a broad understanding of the cycle of life that most people don’t understand until the end of their lives.
We have the ability to see our bodies as unique and powerful, as well as perhaps see the uniqueness in other bodies that society deems unworthy.
We can also, if we so desire, sexualize our bodies despite the dominant voices of society telling us we are unattractive, undesirable, and incapable of sex or being sexy.
We can give birth and raise children despite medical professionals and society telling us it is impossible.
We can give birth and raise children despite medical professionals and society telling us it is impossible.
This list, like the seemingly endless (and often depressing) statistics we see and hear every day, could go on and on. But it is in this spirit of positivity that we work best; the world of women with disabilities is a complex place, often with no easy answers, but that is why we’re here. With the strength of each of our members, and our allies throughout the global disability and women’s world, we’ll continue to use the tools at our disposal to create a place for discourse, debate, humor, art, research and resources, and most of all, community.
Here are a few slides of the things we do specifically in Second Life, though our network extends far beyond.
Outreach and Education
We will now open it up for questions and comments. 🙂 Please briefly let us know you have something to add, and we will call on you one at a time. As a reminder, all questions and comments should be in text. If you are unable to type and need to use voice chat for your question or comment, please let us know so that we can dictate your question. Thank you!
Responses to questions:
(Where do you see your organization in the next few years?)
We are in the midst of several outreach projects: writing articles, books, etc. We are also in the process of gaining 501c3 status in the effort to expand funding on numerous projects. Its a time of great growth for us after almost 12 years.
(What does Second Life provide your organization that other online social networking sites do not?)
Many of our members enjoy the sense of embodiment and real-time connection that Second Life provides. We are also looking at mixed reality face-to-face meetings.
(Misunderstanding and stigmatization of disabilities lead to exclusionary paractices. How does SL or other online worlds assist in breaking down these barriers, if at all?)
Many people with disabilities find that people are more able to understand them in Second Life because they are able to make more conscious choices about how to express and present their disability to others. Some choose to express their disability with pride and some choose to present themselves as not disabled at all. I would not argue that this is a “leveled playing field” — but more that it allows people to have control over their self-presentationt.
How are you dealing with the actual costs of hardware/broadband, etc?
Much of it is donated, or handled internally. We are all geeks, and used to run an Internet service provider in California.
How does SL open, educate or improve inclusionary practices in both directions?
IRC is one of the ways we keep our door open to those who have less access to technology, like broadband or computer power needed to run SL. We try to work in is many online communities as we can and use things like IRC as a less intensive access point. Mobile access helps tremendously. We also work on twitter, facebook, IRC, LiveJournal, and a number of other platforms.
Anecdotally, being here, we’ve seen a shift within our groups and other disability groups we ally with, where people are more willing to discuss and identify with issues related to disability
Also, if any of you want to contact us on SL, our SL coordinator is here: Ofelia Pevensey