Privacy Issues Continued

This article was originally posted on Yahoo! Accessibility.

In our last post — Privacy, Women with Disabilities and Online Space — we discussed online privacy issues for women with disabilities, as well as some of the things we do to address them as a group. Though it is impossible to summarize all privacy issues people with disabilities face, our team thought it was important to look at privacy through a broader scope. Invasions of privacy are a constant and pervasive part of the experience of having a disability, for many people.

To recap our last post, most online privacy issues are related to creating identity. The Internet has some ability to “normalize” people with disabilities and allow them to disclose whatever information they want when they are ready. If someone is uncomfortable with their disability, they may have no need to disclose their disability online to have a place where they can be free of stigmas that may be difficult off-line. Conversely, if someone is totally comfortable with their disability, they can be totally upfront about it online in order to reach out to others in the disability community. People have different expectations of what privacy means online, but the ability to control what information is disclosed can be a powerful experience that many people with obvious disabilities ordinarily wouldn’t have the freedom to do. The same could be true of gender or any other identity. People can experiment with what they disclose online in ways that feel safe to them.

What we Missed in our Last Post About Privacy Online

Devotees

A big issue with privacy online we didn’t highlight in the previous post was devotees (people who fetishize disability or associated adaptive equipment such as wheelchairs or canes). There are different camps of thought about devotees in various online communities, though we as a group do not think it is healthy to expose our members to these individuals and do not welcome them in to our spaces. However you feel about them, they are very present and numerous online, particularly if you disclose that you are a woman with a disability. They friend you on Facebook on a daily basis. They frequent disability focused chat rooms. They visit disability spaces on Second Life. They ask inappropriate questions, make lewd comments, and generally treat you like a sexual object. It feels pretty creepy and dehumanizing to most women, and it is hard to escape. Many people develop defense mechanisms to deal with devotees, like asking leading questions when meeting new people online in order to get a better read on their intentions. Most devotees are pretty obvious about their goals. However, some of them are more subtle so can be harder to read, particularly as many people with disabilities are socialized to expect people they just meet to ask really personal questions that others might find rude as a conversation opener (which we go in to more later).

CAPTCHA

Additionally, some of the ways some companies provide accommodations for inaccessible websites can also violate privacy. Instead of offering accessibleCAPTCHAs (those scrambled letters and numbers you have to type in when creating an account) that people using screen readers can utilize, some companies require those users to call in to verify their account. Sadly, free, accessible options to use instead of CAPTCHAs are readily available.

A Larger Picture of Privacy Issues for People with Disabilities

The conference we took part in (PrivacyCampTO2) predominately focused on online privacy, so our conversation started there. People had a lot of feelings about that topic, but also had a ton of things to say about privacy for people with disabilities in general. Not surprisingly, as the very nature of disability can involve a lot of people in your personal space on a fairly regular basis. Caregivers handle your personal body. Medical professionals have you in all kinds of embarrassing, dehumanizing positions in those not quite big enough to cover your behind gowns. You may have to rely on others to help you read or otherwise access private or embarrassing information. (Try shopping for the right condoms on your own when you can’t read the package!) To some degree, most people just acclimate to the constant barrage of invasion of privacy. Particularly if you are raised with a disability, this can lead to both an altered expectation of privacy and a heightened appreciation for the precious little privacy you get.

Invisible or Hidden Disabilities

Even people with more invisible or hidden disabilities have fairly constant issues with privacy, on top of ones already mentioned. Because of stigma and fear of discrimination, some people with non-obvious disabilities may choose to not disclose their disability unless absolutely necessary. Knowledge of a disability can affect how professors treat you, how likely potential employers are to hire you, and how new friends view you before they get a chance to know you as a person. However, people often find full disclosure out of their control. Even simple gossip about someone’s disability can put that individual in the position of having private information made much more public than they intended.

Random Strangers

For reasons we will not speculate on, random strangers that people with disabilities encounter often feel it is their right to immediately know really personal information like diagnoses, health status, and any host of other information. Most people will answer to be polite, but think about it: do you normally go up to strangers and start off a conversation with asking highly personal questions? Pregnant women often report this same experience with unknown people invading their personal space (touching their belly, etc.), asking really personal health questions, and assuming what emotional space they are in. It is a common experience of many people with disabilities for the entirety of their life (or disability if it is not life-long).

Caregivers

Unfortunately, that same lack of privacy can often extend to known people as well. Most people report experiences of an extreme lack of autonomy when dealing with caregivers and parents (of children over 18 in particular). Many people have probably experienced trying to get a little private time with that special someone as a teenager, but people with disabilities often stay with their parents longer than others might for practical concerns related to independence. When you add caregivers and nurses to the mix, it can be really difficult to get the privacy needed to explore your very normal sexuality. One person even reported that his nurse was keeping logs of when his girlfriend visited to show to his parents (even though he is an adult), and that the nurse kept barging in to his room despite being asked to wait in the other room. They eventually just locked her out and called her supervisor. This is an unfortunately common tale.

Even if caregivers are respectful, the very nature of the relationship requires a great lack of privacy. That person often knows every intimate detail of your life, like it or not. They often know financial information (though most keep that as private as possible), when you are on your period, how you vote and when you have sex. It requires a caregiver very dedicated to professionalism to keep that information to themselves. The information they aren’t required to meticulously log in your file, that is. Anyone with a government-funded caregiver has their life logged in great deal. How many times a day do you go to the bathroom? How long does it take you to go to the bathroom when you go? How long does menstrual care take you each month? These are standard questions you have to answer (both on forms and in an interview with a government employee) in order to qualify for caregiver and other government funding.

In the United States, some parts of HIPAA were intended to ensure patient privacy, which is a good goal. However, most people have not seen improvements in privacy in ways that are meaningful to them. Mostly, the largest outcome of it has seemed to be making the whole medical process even more complicated, as if the endless paperwork shuffling and constant checking in with a team of medical professionals wasn’t complicated enough.

Most importantly, we discussed that privacy means vastly different things to different people. Some want more, others less. Some know a lot about privacy, others don’t really care to know as much. There are, we are sure, many privacy issues that were not included here in this article. It is just too huge and varied an issue to fully cover in a couple of blog posts, and we would love to hear your thoughts and stories about privacy (below). People are individuals and there is no one experience that describes or represents everyone. The important thing is that people be allowed to control their own privacy in ways that work for them.

Do you have other examples of privacy issues that people with disabilities face? Comment on them below!

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]).

Social Media Makes Us “Less Human”?

This article was originally on Yahoo! Accessibility.

There has been a lot of interest on the Internet recently over MIT (Massachusetts Institute of Technology) professor Sherry Turkle’s new book Alone Together: Why We Expect More from Technology and Less from Each Other and her assertions about how technology, including social media, makes us “less human”: “we are changed as technology offers us substitutes for connecting with each other face-to-face” (Turkle 2011). So, what exactly is “human”? The Wikipedia entry for the term “human” points out that “…self-awareness, rationality, and sapience, are considered to be defining features…” As humans, sharing that essential human nature of commonality of our experience with people who understand our reality is necessary to maintain mental health. We are social creatures, after all. So, is it the essential nature of social media and technology that make us more disconnected, or is it how people choose to use these technologies?

Before the existence of social media

Instead of commenting on the general argument, we’d like to talk about a specific issue. What about people who were already disconnected from face-to-face contact? There is a large population of people who were highly socially isolated before the existence of social media, due to disability or other factors. Even if they had the physical ability to go out and meet people face-to-face, and even assuming that they were accepted into general society as an equal human being (which is a huge assumption for people with disabilities), would there even be people with similar experiences in their community for them to relate to? If you are a city dweller, you may run into other people with disabilities or be able to go to specific disability-related cultural events in order to meet people who can understand your experience. What if you live in a smaller town or an isolated area, where there are very limited or nonexistent opportunities for you to meet other people?

And let’s go back to that assumption of society treating someone with a disability as an equal human being. Many people with disabilities rarely experience being treated as “human,” with all of the associated normal struggles and strengths. Particularly if you are someone who has a visible disability, the standard face-to-face interaction with others in public is too often tainted with infantilization and a general sense that you are being seen as something distinctly “other.” How do we find commonality with others in that?

“Normalizing” potential of social media

What if, for some of us, the “normalizing” potential of social media allows us to be seen for who we really are underneath our meaty exterior? Wouldn’t that, in fact, make us more human rather than less? For those of us who are isolated for whatever reason, doesn’t the ability to find people we can relate to on a very personal level also make us more human? We are not saying that social media is the answer to everything. It isn’t. If you use it without an eye to balance, outreach, and human connection, you will probably feel fairly isolated. We are saying that people can choose to use any social situation, technology-mediated or not, in different ways. Sure, if you choose to isolate yourself from those around you, you are going to be isolated. But you can also choose to open up entirely new worlds. You can use social media to get involved in groups and nonprofits. You can make friends online that carry over into face-to-face relationships (which many of us have done for many years). You can find people with things in common with you who might be impossible to find where you are.

Every week at GimpGirl Community we come together online via synchronous methods (like Second Life and IRC) and asynchronous platforms (like LiveJournal and Facebook) to share commonality with others. We share strategies for dealing with frustrating medical systems, and tips for how to better utilize adaptive equipment. We talk about better ways to have sex, or find locals we might share commonality with. We vent frustrations that no one without similar experiences would understand. We help other members going through abuse, or trying to find ways to get out of bad situations. Some who join us probably leave the same as when they entered our little corner of the ‘net, but most leave saying they feel surprisingly more human than when they came.

 

Sources:

Turkle, Sherry. (2011). Alone Together: Why We Expect More from Technology and Less from Each Other. Basic Books.

Accessibility and Online Communities

This article was originally posted on Yahoo! Accessibility.

Online Communities

What are social networks? Most people are familiar with websites like MySpace, Facebook, and Twitter, but there are many others. These are places where communities are created by sharing photos, links, videos, and text-based status updates.

Although social networking sites have constant updates, there are still fundamentally a static experience. People who look for real-time interaction often explore virtual worlds. These are animated three-dimensional environments created with Computer-generated Imagery (CGI) and other rendering software. Users interact with the world and other users through their avatars, graphical representations of themselves that they can create and modify. Virtual worlds can be accessed through a web browser, or more commonly, a program is downloaded to the user’s computer that allows access.

Virtual Worlds

You may be familiar with World of Warcraft, which is a popular Massively Multiplayer Online Role-Playing Game (MMORPG); virtual world where users play a game together. There is a growing list of virtual worlds out there. Second Life is currently the largest virtual world that is not specifically a role-playing game. It is a varied virtual community, in which real-world companies (like IBM) and even universities (like Harvard) participate.

Universal Design

Universal Design extends the notion of accessibility to include design that is useful to people with and without disabilities. It was introduced by a team whose leader, Ron Mace, is a disabled architect. While the ideal physical world is accessible to everyone; universal design also applies to the Internet and online communities.

“Universal design seeks to encourage attractive, marketable products that are more usable by everyone. It is design for the built environment and consumer products for a very broad definition of user.”

– Ron Mace

Virtual worlds, i.e. Second Life, have made specific efforts to improve accessibility for people with certain kinds of disabilities. For example, users with low vision can use a “guide dog” to identify nearby avatars and objects, screen readers read text chat aloud, or screen magnifiers make the text large enough to read.

Second life virtual guide dog

People with mobility issues can find it difficult to navigate through a virtual world using only a mouse. More recent versions of virtual world software have incorporated alternate navigation controls, such as the ability to use keyboard commands. Environments are also becoming more compatible with voice recognition software, which is used by many people who have difficulty typing.

On a broader scale, people with disabilities in virtual worlds have used virtual worlds to show what accessibility should look like in real life communities. For example, installing wheelchair ramps in Second Life is an important first step to providing a welcoming environment for wheelchair using avatars, and to build awareness around the need for physical accessibility of buildings in real life.

Our friends over at Virtual Helping Hands coordinate  Helen Keller Day, a popular annual event  dedicated to “exploring how and why to employ, educate, entertain, and engage everyone through virtual worlds.” It  brings together people with disabilities, businesses, nonprofits, and other organizations to discuss access as it relates to Second Life. There is much good work being done to address these concerns, but more work is needed to create truly accessible spaces.

Creating Access

The use of Universal Design to make virtual worlds more accessible to people with disabilities can also help other people. This is especially true for those with communication problems caused by language barriers, older computers, and even slow typing skills. Universal Design also helps people who are unable to process a fast-moving visual environment; such as those with seizure disorders, chronic headaches, or other visual processing issues.

This is where social networking communities and virtual worlds can come together. Integrating social media into virtual worlds and building strong cross-platform communities that distribute information is essential. While not every site or community will be accessible to everyone, good community leaders have to meet their audience on different platforms and be flexible; providing options for people to participate in their communities. People learn to use technology in ways which they can understand and comfortable with.

Even in a graphic-heavy virtual world like Second Life, some groups have found ways to include people who can’t or choose not to enter the environment. For example, some groups make use of an IRC relay during meetings, which transmits text chat from Second Life into an accessible text-based chat room.

Who Benefits?

Why is access to online communities so important? There is a huge population of people seeking personal support to overcome roadblocks in their life. They may not have access to these support resources offline.

The GimpGirl Community often sees women with disabilities, fresh out of a rehab hospital after a spinal cord injury, looking to connect with others to explore this whole new world of having a disability; an experience that causes most people to completely rework their personal identities.

Sometimes these women share the cause of their injury and sometimes they don’t, depending on what they are comfortable with. One young woman eventually trusted us enough to disclose that she  was injured because her boyfriend lost control of the car while trying to beat her. Sadly, this  didn’t surprise us, as “[p]hysical assault by someone known to the victim is a leading cause of injury to women. Nearly two million women are assaulted each year in the United States, and more than half of women will be physically assaulted during their lifetime. …” according to the Illinois Department of Public Health.

Her family had abandoned her after choosing to stay with her boyfriend, even though she had been trying to leave him since the accident. Her relationship with this violent young man literally left her with no support through this major upheaval in her life. Many women’s shelters are not accessible, though this is slowly changing. The relatively anonymity of online communities allowed her to share her experience with others who knew what she was going through; people who had not been burned by her personal decisions. It helped her gain strength and develop strategies for the long battle she faced.

Her story, unfortunately, is an all too common one. Many women come to us facing abuse, food insecurity, and homelessness. They need emotional support and commonality, along with help researching what community services are available to help them.

Others who benefit are students in learning environments, and people seeking information or support. This makes universal design of access to information and community good for everyone, not just people with disabilities.

GimpGirl Community at 2009 IEEE Accessing the Future Conference in Boston

 

We pleased to share that GimpGirl Community Liaison Katherine Mancuso will be presenting on our behalf at the 2009 IEEE Accessing the Future Conference, which takes place in Boston, MA from July 20-21.

You can also read the PDF of the abstract. Are you attending IEEE? Say hello! What are your thoughts on accessible community in virtual worlds? Let us know…

GimpGirl Community at The San Francisco Online Community Report August Meetup

Tomorrow, August 26th at 7pm Pacific is the free monthly gathering of online community managers, enthusiasts, and innovators to meet and discuss tools and strategies for building and managing effective communities.

Liz Henry will be representing GimpGirl Community as the August guest speaker. GimpGirl has been doing online community since 1998 as a means to connect, support, and make positive impact in the lives of women with disabilities with an active presence on a number of social media platforms including the virtual world of Second Life. Liz will discuss the process of building and sustaining a growing community, meeting the needs of users, and strategies for managing community on multiple sites. Her talk will kick-off an informal discussion on managing and supporting online communities in all forms.

Speaker Bio: Liz Henry is a producer and developer at BlogHer, the award-winning aggregation, syndication and advertising network for women bloggers, and is on the advisory board of GimpGirl. She has been writing online since 1990, drafted the Common Public Attribution License for SocialText, and has been a key figure in organizing BarCampBlock, WoolfCamp, the Tiptree Awards and Wiki Wednesday. She has been a wheelchair user on and off for fifteen years, and is a proud member of the Secret Feminist Cabal.

Hope to see you there! They will also be streaming the event live on justin.tv and you can also follow the action on Twitter #ocrsf .

You can RSVP for this event here: http://www.meetup.com/SF-Online-Community-Report/calendar/10938416/