Privacy, Women with Disabilities and Online Space

This article was originally posted on Yahoo! Accessibility.

There is frequently discussion about privacy concerns online, but little discussion about the implications of how it impacts individual lives in both positive and problematic ways. As community organizers who work with and in vulnerable communities, privacy is a constant topic of conversation. To prepare for Privacy Camp, we discussed how privacy applies to our community and how it benefits our work in supporting the lives of women with disabilities. We outline the main points from the key questions raised below:

Why do women with disabilities need to have a private space?

Women with disabilities have unique issues–something we’ve written about before–and require a space that is private and “just us” in order to address them.  Women are socialized to be caregivers, and often do not speak up for their own needs in mixed spaces, even when around men who value gender equality. We think it’s important to have spaces private to certain identity groups where members can build commonality without outside pressures to help allow people to have pride in their identity in the rest of the world.

For example, one of these sensitive issues is abuse. We believe the lifetime abuse rate of our particular members is probably above 80%, though figuring out exact statistics in our community is difficult because we depend on self-reporting and never pressure people to disclose. Statistically speaking, a majority of the perpetrators of that abuse are male. We are not saying that all males are abusers in any way. Many of us have male partners or husbands that are an integral part of our lives. However, we need a safe, private place separate from potential pressures in order to process abuse and other sensitive issues. If a woman with a disability finds herself a victim of physical, sexual, or psychological abuse, having a safe, private space to share experiences with others who have had similar experiences can be empowering, and help break the cycle of violence.

Having a unique, private space also builds pride, identity and solidarity in being women. Women with disabilities (and likely any minority group) gain something by being open with other women with disabilities. In the public and more mixed-sex faces of GimpGirl, we’re able to amplify these positive feelings by highlighting achievements of women with disabilities and interface with our allies. Women often feel more empowered to make choices around their own bodies and feel beautiful and proud when they have a positive, accepting place to discuss sexual issues which may be uncomfortable to talk about in mixed-sex environments like menstruation and female masturbation (even for women who do not necessarily have sex with men).

So how do we create this kind of private & safe space using very public online tools?

We use accessible or adapted online tools to bring people together from around the world. Many of these tools, such as Facebook, have built-in privacy features, such as creating group spaces that require approval of a moderator to join, in order to control who is allowed at any particular meeting. Synchronous platforms, such as Second Life and IRC (Internet Relay Chat), also have tools to eject and ban visitors. One of the drawbacks of the anonymity of online spaces is that it is impossible to know exactly who we are allowing into our safe space even though we put a great deal of effort in to screening participants. However, moderator tools provided by the platforms help us take action against people who violate our code of conduct (which we clearly state must be followed at all meetings and on the website). We also worked with our community to write our code of conduct, so that there was a larger investment in following it, and will continue to update it as the community sees fit in order to guide behavior. All regular participants are aware of the rules because they help write and update them, so they act as additional enforcement of the boundaries.

What options allow people for masking their identity and protecting their privacy, even within our safe space?

So let’s start with what we DON’T allow people to mask. We have clear rules that are stated at every meeting and on our website of who is and isn’t welcome to meetings and on various platforms. We additionally either require every new member fill out an application form discussing their interest in women with disabilities, or we research their online identity (depending on the platform). This helps make sure people fit our basic rules–that they can personally identify with both women’s issues and disability issues in order to attend “closed” meetings.

However, we do not insist people tell us their real names or their diagnoses, where they live specifically, or any other information. We feel that that is something they can choose to disclose to us as they feel comfortable and as context allows. This is a trust issue. As long as they trust us enough to follow our rules and engage with us, we trust that they will open up at their own pace. Many people who are struggling do not want to divulge all of their information to random strangers on the Internet, particularly because people hear about horrible things that happen to people who give out personal information online. There is a certain amount of mutual trust that has to be built in a group such as ours.

Does allowing people to keep certain information private allow them to be more open?

Yes. Many people feel more comfortable talking online because they know that it is unlikely they will meet any of these people in their face-to-face life. In some communities where the tone is different, that encourages bullying, trolling and aggressiveness. In our community, where we work very hard to set a tone of mutual support through example, our code of conduct, and thoughtful facilitation, anonymity and the right to privacy has led to increased trust and openness.

When people are actively in extremely stressful situations and feeling vulnerable while facing major changes (such as adjusting to a disability), it can be really hard to talk about the intimate details of their lives to people who know them in person. Women with disabilities often feel that people around them cannot relate to these issues, and some feel that they would be ‘burdening’ them with their problems if they shared them. It may also be difficult to gain an objective viewpoint from those close to the situation, such as family and friends. Additionally, women with disabilities, especially those who require assistance with daily living, are compelled to share much of the intimate details of our lives with others (medical service providers, family members, caregivers) whether we’d like to or not.

A place where we retain control over disclosing the details of our lives can be really important to feeling dignity, empowerment, and agency around our personal information. Providing a level of anonymity and making allowances for privacy can enable women in our space to go much deeper into issues and share experiences, giving individuals the opportunity to gain peer support and advice to move forward and giving them the confidence to make positive progress in their lives.

Join in the conversation!

GimpGirl Community is hosting an event on March 19 at Privacy Camp in Toronto and online in Second Life and IRC. If you’re interested in discussing the issues we raise in this blog post further, please join us in the conversation.  More details to follow at http://www.gimpgirl.com.

We believe these tools and ideas are transferable to other communities that work with sensitive issues, and have given talks on how to transfer some of these ideas (see IEEE-IBM 2009 Presentation [click “more” for abstract]).

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About Jennifer Cole

Jennifer Cole (SL: JennyLin Arashi) is a founding member and Director of the GimpGirl Community. Jennifer is also a research associate in the Experiential Design and Gaming Environments (EDGE) Lab at Ryerson University. She has worked with Oregon Public Health to create state policy recommendations around women with disabilities and sexual health. Jennifer currently resides in Washington State. She is an invited speaker and author on topics such as disability, social media, technology and sexuality.