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]).